This is the sixth in a continuing series of posts about my experience (limited as it is) as an author. Click here for a complete index of all the stories in this series.
In January 1993 I published my first book. It was a book about computer graphics titled Ray Tracing Creations. Ray tracing is a way of making photorealistic computer-generated images. Unlike other rendering methods, ray tracing creates realistic-looking reflections. Technically I was a co-author who got second billing but about 60% or more of the book was my work. This is the story of how I got involved in ray tracing and how I came to write this book
CompuServe and Me
As I mentioned in my story about my magazine feature “The Reunion“, in the early 1980s I got involved in the online community known as CompuServe Information Service. It was a precursor to the Internet and predated much more popular America Online or AOL as it was called. CompuServe was a very expensive service costing up to $6 per hour to connect. I would not have been able to afford it if I didn’t get a job as a forum moderator/discussion leader on a variety of forums. In those days they were called “SysOps” which was short for System Operator. If you worked as a discussion leader or SysOp you would get a “free flag” which would give you free connect time as long as you are working in your designated area.
My first free flag was in a group called NipSig which was short for National Information Providers Special Interest Group. It was a meeting place mostly for newspaper people who were supplying content for CompuServe. And eventually was renamed Issues Forum because it turned into a general discussion group for politics and a variety of other issues. There was a subsection called “Handicapped Issues” and I was a discussion leader in that group. I met friends there that are still friends today and that was nearly 40 years ago. Most notably my friend Pamela Bowen who was a newspaper editor had encouraged me as a writer and gave me the courage to write that article about the reunion.
One of the subsections of the Issues Form was about sexuality and it eventually spun off into a forum of its own forum called HSX or Human Sexuality Support Groups. I moved over to that forum to lead a subgroup on disability and sexuality. That particular subgroup didn’t generate much activity. Only a handful of people participated in the forum. Once they had discussed their relationship issues related to their disabilities there wasn’t much else to talk about. When an opening came along for the head sysop of that forum I took the job. It wasn’t so much as a discussion leader but just the day-to-day maintenance of the message boards and upload areas screening for inappropriate content etc.
If you were a full-fledged sysop and not just a discussion leader you would get a free account that was good anywhere on CompuServe, not just the area you managed. One of my favorite places to hang out was the Graphics Forum. In 1990 I left HSX and devoted full time to the graphics forum. I had been involved in the graphics forum for several years. I was there in 1987 when CompuServe first introduced a graphics file format called Graphics Interchange Format or GIF. When a revised standard came out in 1989 it included the specification for overlaying partial images in a way that could create very rudimentary animations. I wrote some software that would help piece together multiple images into a very crude animation. This was MUCH less sophisticated than the animated GIF files you see today.
My Claim to Fame
One of the popular things to do with this new format was to scan softcore porn images and upload them. There were special adult-only sections in the HSX and the Graphics Forum for these uploads. Although I cannot prove it, I am claiming that I made the very first animated porn image ever created in GIF format. I found a very grainy low-quality nude image and using a paint program painted on a pair of underwear. Then I animated it so that the underwear came off. I still have the image stashed away somewhere but as I said, I can’t prove that it was the first such image ever created. I know that 99% of the GIF images in existence at the time came through the CompuServe forums. I had one of the very first programs capable of creating an animation. So I’m confident it was the first animated porn GIF ever made. Now back to our regular story.
One of the subsections of the graphics forum was a gathering place for programmers involved in the open-source graphics rendering program. There was a guy named David K. Buck who had a program called DKB-Trace. He decided that he didn’t want to work on development anymore. He donated the code to a new team of developers led by a programmer in California named Drew Wells. Drew formed a new group and renamed the software Persistence of Vision Ray Tracer or POV-Ray for short. The program was completely text-based. Using the POV-Ray language you would specify the location and shape of various objects, their color, reflective properties, texture, transparency, etc. as well as the location and intensity of several light sources and location, direction, and field-of-view of a virtual camera. The program would then take this information and render a photorealistic image. It was all done with text that had to be parsed and converted into something that can then be rendered.
Sometime around 1990 perhaps 1991 I submitted my first piece of code to the project and eventually became a very active developer. I added code that allowed you to put in mathematical formulas to position objects. Previously you could just specify the X, Y, Z location of an object with raw numbers. Or you could initialize an identifier such as width, height, length to be particular values that can be referenced throughout the specification of your scene. But before the code I added, there was no way to put in a formula such as “width+index*5”. In my senior year of college, I had taken a graduate-level 600 course in compiler design so it was trivial for me to know how to parse an expression such as that. At one point the POV-Team gave me the nickname “parse meister”.
The Book Deal
In 1992 our team leader Drew Wells made a deal with a computer book publisher known as Waite Group Press run by a man named Mitch Waite. Drew was given the task of writing a book called Ray Tracing Creations. He had only written a very few short chapters and the book wasn’t going to be much of a book at the rate he was going. I don’t remember if I offered or if I was recruited to submit a reference section to the book. It would be detailed documentation of all the commands and functions available in the POV-Ray program. Below is the table of contents of the book. I wrote the introductory chapter which was 30 pages and the reference chapter which was about 230 pages. Another team member named Dan farmer wrote chapter 6 on animation that was about 30 pages. Drew wrote the remaining pages about 200 long.
Here are the “About the Author” pages. That blurry image of Drew really look that bad in the original book. It’s not that I did a bad scan of it.
I dedicated the book to my online friend Pamela Bowen who was a newspaper editor from Huntington WV. She had read much of what I had written long CompuServe including my magazine article “The Reunion” and I was so grateful that she had encouraged me to write that I had to dedicate it to her. People said “What you couldn’t have dedicated it to your mom or dad or something?” Later when we did the second edition of the book I dedicated it “To my parents… Who taught me that I could do anything.”
I believe the book sold about 6000 copies. I think I was paid a flat fee of maybe $1000 and Dan got a stipend as well but Drew got most of the royalties. Drew had lots of personal issues going on in his life and if I hadn’t stepped in to complete the book it would’ve never happened.
The book came with a 3.5″ floppy disk containing the program. Unbeknownst to the POV-Team in general, Drew had promised the publisher that they would have exclusive rights to distribute the program with a book. The problem was, the software was completely open-source. Anyone could make copies and distribute them however they wanted. There was only one official version but in general, it was a free program. When a couple of magazines decided to distribute our program on a disk with the magazine, the folks at Waite Group got pretty upset. We had to go through a lot to get them to defend our exclusive deal. We were constantly sending threatening letters to people telling them that they could not redistribute our program if it was bundled with some sort of print publication. The whole thing was a nightmare.
The Second Edition
About a year later I was recruited to update and revise the book. This time it would be my book with Drew getting second billing. I don’t recall if he got any payment of royalties for the second edition. I know that I got real royalties this time. It was about $1 per book and it sold just under 6000 copies. Between the two versions of the book, we had made pretty extensive updates to the program and so this new version of the book reflected those changes. The book was also translated into other languages. Somewhere around here, I have a version in Portuguese that was sold in Brazil. I received a small one-time fee for the foreign language versions.
By this time Drew was completely missing in action and I had taken over management of the team. I refused to call myself the “team leader” and I retitled the job “team coordinator”. It was a reaction to the fact that Drew had led us into a real mess and I wanted to have a more cooperative group decision-making process. Hence the name “coordinator” rather than “leader”. I contributed a small section to a couple of other graphics books published by Waite Group Press and I was paid a small flat fee for the contribution.
My Big Failure
I don’t recall if it was after the second edition of Ray Tracing Creations or if it was between the two editions but at one point they wanted me to write a new book. This one would be entirely mine. It would be more of a tutorial on how to create images rather than a reference manual like the books I had written. There was a brief tutorial in Drew’s chapters but they wanted an entire book that was a how-to book rather than a reference.
I wrote a sample chapter that they liked and they sent me a contract to sign. The big problem was they wanted it done by a certain date. After writing another chapter or so, I realized that it was moving much too slowly. There was no way I was going to be able to complete the book in time. I kept putting off signing the contract and they would send me emails asking me what was wrong. Finally, I gave them a call and tried to talk to Mitch Waite himself. He was unavailable but I talked to one of the associate editors. I don’t remember his name.
I admitted to him that the reason I hadn’t signed a contract was that I was wrestling with the possibility that I just couldn’t do it. I asked him if I could have more time. I estimated it was going to take me maybe five or six months more than whatever deadline they had set. I’m thinking it was two or three months. I don’t remember.
They wouldn’t budge on the deadline. They said that the first book had created momentum and that they were on a schedule where they wanted to publish something every five or six months I think. I don’t remember. This was a rather small market and they were putting out a catalog of new titles to send to retail and wholesale book buyers. If I delayed, it would leave a hole in their schedule. I just gave up.
In July 1994, Ray Tracing Worlds with POV-Ray was published. They hired another POV-Team member Alexander Enzmann as the primary author. In our group, he went by the name Xander. Another team member named Lutz Kretzschmar who lived in Germany had written a program called MORAY that was sort of a primitive CAD graphics modeling program that would let you create objects in sort of a primitive wireframe version. It didn’t give you an accurate preview of what you’re scene was going to look like. After you created the wireframe preview, it would export files in POV-Ray format. They included a copy of his program and he contributed a chapter and got second billing as co-author. I contributed an appendix that outlined the difference between the earliest versions of POV-Ray and the latest one.
Now that I think about it, this book must have come out between the two versions of Ray Tracing Creations because I’m pretty sure my second edition covered a later version than the one bundled with Ray Tracing Worlds.
The reason that they were able to create the book so quickly is that much of it focused on how to use the CAD program. I had never used MORAY and would not have been able to write such a book.
As I mentioned earlier, the normal way of creating a scene to be rendered was to type it out in a special computer language as an ordinary text file. It takes a lot of time to explain how to do that. Using a CAD program is easier. Unfortunately, the MORAY didn’t support all of the features of POV-Ray.
I was disappointed we never did publish a book about the detailed usage of the text-based method of creating a scene. I considered the possibility of going ahead and writing the book on my own time and submitting it to them on spec but I was getting burnt out on working with the program and never did write that other book.
The Rest of My POV-Ray Story
I don’t remember exactly when, but shortly thereafter I stepped down as the team coordinator and handed things over to a guy named Chris Cason who lived in Australia. The program has gone through a couple of minor revisions since I left. Chris Cason still manages the team although I don’t know how active they are lately. I don’t think there’s been an upgrade in several years.
Other CAD software and rendering programs such as Autodesk Fusion 360 and Blender are easier to use and produce spectacular results. They are completely graphics-based and you can see what you’re working on while you are working on it. You don’t have the disadvantages of a clumsy text interface. They do not use ray tracing to generate images. Ray tracing is incredibly slow. However some of the advanced graphics cards being sold for PCs these days have ray tracing algorithms that produce accurate reflections that are not possible in other forms of rendering. Even Pixar has gotten into the ray tracing business. Some of the scenes in Cars 2 and later Pixar movies had ray tracing effects.
I initially got into ray tracing because I wanted to create my own images. In my teens and early twenties, I tried pencil sketches as a way to create art but I never got good at it. One of the things I learned the hard way is why artists paint on an easel. I had to lay my paper flat on a table to draw. I would prop up my head on my left hand and often my head was at an awkward angle. Some of the drawings didn’t look too bad until you pick the page up and looked at it directly. It had all sorts of distortions because I was drawing it looking at the page at an angle.
Eventually I lost much of the use of my hands so the only way I could create images was on the computer and ray tracing was the perfect way to do it.
In 1995, I made a Christmas card with a ray traced rendering of two angels hovering over the little town of Bethlehem and the Star of Bethlehem shining down on the city. I created a new ray traced Christmas card every year from then until Christmas 2019. There was one exception. In 2016 a few years ago I took angels from the 1995 image and found a way to export them in a format where I could make physical objects using my 3D printer. I also printed tiny buildings of Bethlehem and the Star. I pasted the star on a dark blue cardboard background and photographed the scene re-creating the 1995 image.
For Christmas 2020 I had completely run out of ideas. The cards were expensive to print and it was time-consuming. I didn’t send Christmas cards that year and probably will not this year.
One of my blogs http://graphics.cyborg5.com/ gives details about some of the images I’ve created and how I made them. Here is a photo album of all of my Christmas cards on my Facebook page. They are public images and you should be able to click on the link and see them even if you are not a member of Facebook.
I’m looking for at least one possibly two new roommates/caregivers. Although most of the people who read this blog post already know things about me. I’m going to start from the beginning and assume you know nothing because I want friends and family to be able to forward this post to as many people as possible whether they know me or not.
Who is Chris Young? And why does he need a roommate?
Hi, I’m Chris Young. That’s my photo on the left. I’m 65 years old (will be 66 in July 2021) I have a genetic neuromuscular disease similar to muscle dystrophy. It’s called Spinal Muscular Atrophy. You can read more about it here. I lived in the same house on the northwest side of Indianapolis in the Eagledale area just north of Speedway ever since I was three years old. My parents took care of me their whole life. We lost my mom 12 years ago and my dad two years ago. When my dad was ill, my sister Carol moved in to help take care of both of us but she needed to move on with her life so I began looking for a new roommate who could help be a caregiver.
My dear friend Barb Alkema and her adult son Josh moved in here in May 2019. They have been a great blessing in my life and have taken good care of me. But things change and situations evolve and it’s now clear that Barb needs to move on to new adventures. Her own health is questionable and she doesn’t want to get to the point where she gets incapable of taking care of me suddenly. Also, her boyfriend Ed who lives in Toledo is facing some challenges of his own and she feels she would be better suited to caring for him. I can’t blame her. She’s given me two good years of her life that has been a great blessing and I wish her, Josh and Ed well.
Barb and Josh will be leaving in a couple of months and my sister Carol will return to help me transition to whatever kind of care I will be getting next. I’m hopeful that I can recruit someone who would live here and help take care of me the way Barb has done the past two years. Carol can help out for a while but that is not a permanent solution to my problem. If I don’t find a long-term solution of someone else who can move in here, then I will have to choose a skilled nursing facility.
A couple of years ago I took a tour of one in Greenwood and it looks like it’s a pretty nice place. It’s clean, doesn’t smell, and there are other people there like me that I can associate with. I wouldn’t be stuck in the same wing with a bunch of Alzheimer’s patients who didn’t know what was going on around them. The room is small and I would have to share it with someone so it would really be a huge change for me. Obviously, I would like to stay in my own home as long as possible.
What Kind of Care Do I Need?
I need someone to be with me 24/7. It’s not safe for me to be alone at any time. I have a trach that helps me breathe and when my lungs get congested we suction out my trach with a suction catheter. I have a G-tube that I use for all my nutrition. I don’t eat anything by mouth (except when I cheat on special occasions). The problem is that my throat muscles are very weak and I have difficulty swallowing. If food or liquid gets into my lungs I’m in deep trouble. I also have a suprapubic catheter connected to a leg bag for urine.
I have a home health aide that comes in every morning at 9 AM to get me a bed bath, dressed, put on my back brace, and get me into my wheelchair. Throughout the day I need someone who can suction the trach as needed, do my G-tube feedings three times a day, and assist me with other minor tasks. Sometimes my back brace needs a little adjustment (a strap looser or tighter). Barb has been taking care of me during the day and she can put me to bed at night using a Hoyer patient lift. She has some medical issues of her own and it’s easier to get me to bed and disassemble me than it is to assemble me in the morning and get me up. Because of regulations, my home health aides are not permitted to do G-tube feedings, trach suctioning, and they are not permitted to be alone with me in case I need suctioning.
At night I use a ventilator. I’m not really dependent upon the ventilator for breathing. I just use it like a CPAP or BiPAP to help me sleep but you can’t use an ordinary CPAP/BiPAP when you have a trach.
Although the job of taking care of me is basically 24/7, I also have a respite nurse who comes for four and 1/2 hours twice a week. I could probably qualify for as much as 15 hours per week of respite nursing. Barb has been using that time to run errands, go to the gym (pre-pandemic), and go to doctor appointments. Some days she just goes out and takes a walk in the park while the respite nurse is here. Currently, she is scheduled for 9:30 AM-3 PM. on Tuesdays and Thursdays. We can reschedule those hours at different times if we have lots of advance notice. For example, when Carol moves back here we will move my respite hours to evenings or weekends. One of the problems with respite nursing is it works best when it’s on a regular schedule. So we can’t just arbitrarily call up and say “We need someone at this time and date.”
Who Can Do This?
The short answer is anyone with a normal amount of physical ability. The trach suctioning and G-tube feeding are not rocket science. Although the home health aides are not permitted to do it while they are here, I’ve trained friends and family to be able to do these things. For example, if I go out to a movie, concert, or sporting event I take my portable suction machine with me and my friends or family take care of it as needed.
In addition to these activities there is also some slightly more gross stuff to deal with. My urine bag needs to be emptied. And in the evening after I go to bed is usually the time when I need to get on the bedpan. It is not difficult to get me on or off the bedpan. You roll over, stuff it underneath me, roll me back on top of it. After I’ve finished my business you have to roll me off, wipe my butt, and clean up the bedpan.
You would be responsible for maintaining the house, cleaning, laundry, your own cooking etc. The kinds of things you would be doing if you were on your own.
I have a van with a wheelchair lift. I need to be taken to doctor’s appointments and whatever other activities I might need to do. However I don’t really get out very much.
At one point I was thinking perhaps a couple of college students would be good roommates but trying to juggle their schedule, nursing schedules etc. might be pretty difficult. Having had Barb here for two years who is on disability but still somewhat physically capable I’m thinking someone like her who is perhaps physically fit but recently retired might be a good candidate. There is no smoking in the house. Barb and Josh smoke on the back porch or in the unheated garage during the winter. No heavy drinking. No recreational drugs. I really prefer no pets even though Barb brought 4 cats with her. She keeps the litter box well cleaned and if you brought pets I would expect the same. As I told my friends when Barb moved here, given a choice between 4 cats and a nursing home I would get used to the cats. Still, it’s not my preference.
When someone asks who is Barb? I describe her as a friend, roommate, caregiver in that order. She’s my friend first, my roommate second, and my caregiver third. I would hope to build such a relationship with another person.
Is There Any Other Help Available?
Because my current roommate Barb was able to be here virtually 24/7 (except when the respite nurse was here) I did not qualify for any other assistance except for the home health aide in the morning. However when my sister was living here while my dad was ill and after he died, we were able to get nine hours per day of nursing service five days a week so that she could go to work. Unfortunately, that system just barely worked. Even though we had reasonably reliable people, there were always incidents where someone had to call in sick at the last minute, their car would break down, their children or other family had issues. Sometimes they just needed to take some time off for vacation. It was extremely difficult to get replacement nurses, especially for last-minute schedule changes. That meant that my sister Carol would end up either going to work late or not at all. I have other friends who sometimes are able to fill in in an emergency situation but they have lives of their own and cannot always help.
So while technically I could have a roommate with a full-time job, it would be better if I had someone who is retired or available throughout the day. The nursing support just isn’t foolproof. After Barb moves out in a few months, my sister Carol will be here a few more months. She currently has a work-from-home job working for the Indiana 211 Information Line. Thanks to the pandemic (if you can say such a thing), many people are now working from home. As long as you could take a minute or two breaks when I needed something, a work-from-home person would be ideal.
What Does It Pay?
Short answer… Not much. You get free rent, free cable (including HBO and Showtime), free Internet, Netflix, Hulu, Amazon, Disney+, free utilities, use of a desktop computer, use of the entire house, your own bedroom. And that’s about it. However recently thanks to a benefactor, I might be able to pay a small stipend or provide some additional expense money. My resources that I could devote to this could be as much as $1000 per month. However, if I have more than one roommate, that $1000 is the grand total per month. I could not afford that per roommate. I’m still working out some of the details about how this compensation would work. So the benefit really is all in the free housing.
My house has 4 bedrooms. One is mine and one is my office although if we needed another bedroom I could move my computers and other office stuff into the family room. We have a bath and 1/2. Air conditioning, washer and dryer. Refrigerator, gas stove, microwave, and dishwasher. The dishwasher was a big selling point when Barb moved here :-).
More about Me
I’m pretty easy to get along with. I’m addicted to TV. I love sci-fi and action movies. I’m basically a nerd. I have a BS degree in computer science from IUPUI. I write technical articles about assistive technology. I designed and built a variety of AT gadgets including a gadget I call my “Ultimate Remote” that allows me to control my iPhone, TV, cable, computer mouse, and other gadgets all with just three little pushbuttons in my right hand. Below is a video that my friend Bill made when he was helping me make a new version of my remote control. While he was here, I took him on a tour of all of my assistive technology and gadgets. The video below will give you a little more idea of what I’m capable of doing or not doing and how my gadgets work. It talks a little bit about my day-to-day life.
Here are some other links of interest.
- My Facebook page https://www.facebook.com/cyborg5
- My YouTube channel https://www.youtube.com/cyborg555
Also browse around this blog and other blogs that are available on the menu at the top of this page. It will help you get to know me better.
What You Can Do
First of all pray. Pray that the right person is available to keep me out of a nursing home. If you don’t believe in prayer just wish me luck.
Think about your family, friends, colleagues, people from church, social circles, everyone that you know, and think about whether or not they might be able to help me out. Feel free to forward this article to anyone you want to and have them forward it or repost it as well.
Finally if by chance, you might be interested in free rent in a nice house, free cable, free internet, interesting company from a smart and funny guy, all in exchange for being stuck here with me most of the time and wiping my butt as needed… Then contact me. Email me at email@example.com and we can talk via Zoom, Facebook, FaceTime, or phone and/or set up an in-person meeting. Let’s talk about the possibilities and perhaps we can work something out to our mutual benefit.
And keep praying.
This is the fifth in a continuing series of posts about my experience (limited as it is) as an author. Click here for a complete index of all the stories in this series.
I’m celebrating today. I got my first rejection letter!
I’ve not had a lot of things published but I have published a few. I’ve been talking about them in this series of blog posts that I’m calling “Author’s Journal”. I’ve got more articles to write in this series about things that have gotten published. And then something happened today and I simply realized it had NEVER happened before.
I got a rejection letter. (Actually it was an email.)
Anyone who has ever tried to sell their written works probably has enough of these to wallpaper their entire house and then some. Every bit of advice I’ve ever heard about writing is that getting rejected is something that’s going to happen a lot. I ran into a guy on Facebook who had written some sci-fi stories and he got 50 rejections before he had his first sale. But for some bizarre reason (and certainly not because I’m such a brilliant writer) until today I’ve never been rejected. I never thought about the fact before. I never realized how extraordinary it was.
Let’s take a quick review of the things I’ve published. In a previous blog post I talked about 2 technical articles I wrote for an obscure computer magazine called “Microsystems”. They were a couple of little file conversion utilities that I had written for computer disk systems that no longer exists. If there had been the Internet back in those days it would’ve been a couple of simple blog posts and maybe a dozen people might have stumbled onto it if they had done the right Google search. But because these niche magazines in the early days of personal computing were so anxious for content, they agreed to publish my first article and a few weeks later I submitted part two and they brought it as well. They even republished the magazine articles into a book that was sort of a “best of” collection even though the title didn’t say that. Read my blog below about how inappropriate it was for my articles to be in that compilation and the story behind the story.
The second thing I had published was my autobiographical article “The Reunion” which was published in the September 1987 issue of Indianapolis Monthly Magazine. It was a memoir of me growing up attending a special education school called James E. Roberts IPS School #97. They had a reunion at the school that I attended to celebrate that it was closing and all the special ed kids were being mainstreamed into regular education. The visit to the old school brought back lots of memories and I chronicled them in that article. While “Microsystems” was anxious to publish my technical article, Indianapolis Monthly very nearly rejected my story. You can read the story behind the story of “The Reunion” in this post from Author’s Journal which also includes links to an online version of the original magazine article.
My next published work was a book that I contributed to called “Ray Tracing Creations” about ray trace computer graphic rendering. I was part of a team of volunteer programmers who built an open source rendering engine called POV-Ray. The team leader, a guy named Drew Wells, got the contract to write a book about our program. He got tied up in his personal life and only wrote about five chapters and couldn’t finish it. Because I was the next most experienced and knowledgeable person on the team, they reached out to me and I wrote the rest of the book. A short time later we did a second edition rewrite and I got top billing over Drew. It’s not like I wrote something on my own on spec, submitted to a publisher, and waited for a reply. So in this case there really wasn’t a chance of a rejection letter unless what I wrote was just so awful that they decided to scrap the entire existing project. I’ve not yet chronicled the story behind that story. Look for it in upcoming blog posts.
I also had a second magazine article published in Indianapolis Monthly about my first time attending the Indy 500. Although I had been a lifelong race fan and been to practice and qualifying countless times my entire life, I had not yet attended the race itself because prior to that there wasn’t a good place to sit in a wheelchair. The story behind that story will be featured in a future Author’s Journal. While this story could have been rejected, they already knew me and liked my work. This story about my first 500 wasn’t as emotional or moving as “The Reunion” but it was good enough.
Since then I’ve been doing technical writing for the Adafruit Learning System in which I talked about various maker projects I have created most of them involving assistive technology for the disabled. The folks at Adafruit were familiar with my projects because I would show them off on their weekly video show and tell chat room. They had also seen some of my technical blogs and they were happy to publish my articles. Initially I was paid in free merchandise but more recently have been paid monetarily. Again this was a situation where they knew my work, they were anxious to have it, and the chance of getting completely rejected was relatively small. Click here for a list of my technical articles on the Adafruit Learning System.
Some of my best writing has been in my personal blogs but of course I’m the publisher. I’m not going to reject my own work 🙂
This entire Author’s Journal is being written because last summer I decided to try my hand at writing fiction specifically science fiction. I’ve written a novella that was initially 24,500 words long. The problem is the major sci-fi magazines like their novellas in the neighborhood of 20,000-22,000 words long. I worked hard to get it down to 22,000 but that still is going to limit my market.
While I was working on that, I had a dream and when I woke up from it I had the idea for a short story. A very short story. Just 300 words. That’s too short. Some of the sci-fi magazines publish extremely short things under the category of “Poetry” and although it wasn’t necessarily written in verse and did not rhyme, it did have a sort of lyrical poetic nature to it. Maybe it was free verse. Maybe it was a very very short story. I didn’t know.
I was so excited that I had been inspired to write this clever little short piece and had not planned on writing that I did way too little research on where I should submit it.
The obvious choice was the “Magazine of Fantasy & Science Fiction“. It was a little bit surrealistic and so it was more fantasy than sci-fi. Unfortunately at the time they were in the process of changing editors and had closed the magazine to new submissions until they published their backlog of purchase stories and sets of new editorial goals under the new leadership. My favorite of the top sci-fi magazines is “Analog Science Fiction – Science Fact Magazine” but they mostly publish what we might call hard science (technology, spaceships, computers etc.) That left “Isaac Asimov’s Science Fiction Magazine” as the remaining one of what I would describe as “The Big Three”.
The story took me less than a half hour to write. I spent less than an hour deciding Asimov would be my first choice. I uploaded it with a note saying “I don’t know if this is poetry or a very short story but I thought I would submit it anyway.”
They say wait five weeks for an answer. I was also supposed to get an email acknowledging the submission which I never got. But when I would go to the submission website and type in my receipt number it said that my story had been received.
Shortly after submitting it, I discovered there was an entire category called “Flash Fiction“. It consists of extremely, extremely short stories never longer than 1500 words. Unknowingly I had written flash fiction which Asimov typically doesn’t publish. It turns out that Analog does publish flash fiction occasionally. They had one in their November/December 2020 issue. But again this wasn’t sufficiently hard science Analog-like.
I did find an online webzine that pays professional rates of about eight cents per word. It’s called “Daily Science Fiction“. They publish a new story every day that comes to you free by email or you can go to their website. Everything there is flash fiction under 1500 words and preferably under 1000 words. Perfect for what I had written. They publish all sorts of speculative fiction including sci-fi, fantasy, and another category I had never heard of cald slipstream. Apparently slipstream is sort of a bizarre otherworldly kind of writing that is not mainstream but slipstream. Maybe that’s what I wrote.
Realizing how inappropriate my choice of Asimov was, I was a bit anxious to get rejected so that I could submit it somewhere else. It is strictly forbidden to submit the same item to multiple publishers at once. If they catch you, you could easily get blacklisted. Maybe not from the whole industry but certainly ruin your chances with the publications involved.
When the five-week waiting period was up, I still had not heard back anything from Asimov’s. They said if you don’t hear anything after five weeks that you can email them so I did.
Again I explained that I didn’t know if what I had written was poetry or perhaps flash fiction… Probably the latter. But they said if you don’t hear anything in five weeks I can email you so here I am asking what’s my status. Then I added a paragraph… It said something like “By the way I’ve got this novella. Your guidelines say that you ‘Rarely publish anything over 20,000 words.’ I’m working on a novella that I’ve managed to trim down to 22,000 words. I suppose if I was an established author you might stretch your limits but has a guy like me who is unpublished got a chance with a 22,000 word story?”
I fully expected them to write back saying “The rules are the rules. Go away kid… You’re bugging me with this 22,000 word crap.” Much to my surprise I got a very nicely worded email explaining that poetry goes to a different editorial process and can take up to two months. And that my novella wasn’t extensively over the limit and they suggested I go ahead and submit it. They said if we like it and it’s too long we will help you cut it.
I had been through that before. “The Reunion” was too long and the editor there gave me another chance to trim it and then she trimmed some more and put back in some things I took out. So it was a bit of déjà vu.
I still had some final edits to do on my novella but my plan was to submit it at 22,000 words and see what happens. A friend of mine is doing some final proofreading for me and I should be ready to submit it very soon.
Meanwhile today Asimov finally rejected my flash fiction. I was so happy. Now I can send it somewhere more appropriate and have a better shot at it. I have submitted it to Daily Science Fiction. They say that they try to respond quickly but if you haven’t heard anything in four weeks you can contact them. There is a place where you can look up the status of your submission online. So now we wait and see. Maybe I will get another rejection which is okay.
Also over the weekend I finished the first draft of a sequel to my as yet un-submitted novella. This one has come in at 16,000 words so I won’t have to do any major surgery on it to get it within the standard writers guidelines.
I will keep you posted as the story develops and I will be working on more installments of Author’s Journal telling the stories behind the stories of what I have published.
This is the fourth in a continuing series of posts about my experience (limited as it is) as an author. Click here for a complete index of all the stories in this series.
In the first installment of my “Author’s Journal” series, I told the story of a short story I wrote for a creative writing class in high school English. The story of how I wrote the story can be found here.
In that journal, I couldn’t remember the name of the story and didn’t know where I had a copy of it although I knew it existed somewhere.
I found it!
I went through a dusty old box on the top shelf of my bedroom closet and found the folder with my high school writing projects in it. Here is a PDF scan of the original handwritten manuscript complete with the teacher’s notes correcting my spelling in numerous places as well as a couple of other issues. I also have a handwritten note from her praising the work. In my journal a couple of months ago I could not remember the substitute teacher’s name but the note says “Mrs. Allen”.
Here is the complete text of the story as written with only the spelling errors corrected.
Man has always had two ambitions: to build a better mousetrap and to commit the perfect mortar. I have done the latter to the man who did the former.
David Brown was my victim. He had been a friend and business partner for some time until he dumped me from the company two months ago. We were in the pesticide business and our main product was rat poison. Business had been slipping because of bad talk about pesticides polluting the environment. People would rather clean up the trash to get rid of the rats than by our poison.
Then Dave came up with the answer. His formula affected only rats. It altered their chromosomes so that only male offspring were produced. In a generation, the racks would be extinct because there would be no females to reproduce. Dave put the product on the market the week after our partnership was legally dissolved. He had ruined me and I had to return the favor.
I once read a mystery story where a man was stabbed with a sharpened icicle. The motor was never caught because no weapon was found; it melted away. The idea started out as just a wild notion, and I didn’t take myself seriously at first.
Then, just to past time I started to work out details, but just to pass time. The longer I worked on my plan the more it appeared possible. Also as my plot started to gel; I grew more hateful each day toward my lost partner. I would look out my bedroom window and stare transfixed at the glistening spears going downward from the eaves of my house.
Then I did it. On the night of December 30 I left my house and walked around the side and carefully snapped off an icicle. As I walked towards my car, I chipped off pieces with my pocket knife till there was a clean sharp point. I left the heat off in my car so that the 10° weather would keep my weapon sharp. I knocked at the door with my icy weapon behind my back. Dave answered the door.
“Well, if it isn’t Bob Johnson my old partner. Come on in.”
I tried to stay calm, “I just wanted to let you know that I’ve decided I’ve been foolish about holding a grudge against you for putting me out of business.”
He smiled, “Well now, isn’t that sweet of you. Now, tell me why you’re really here.”
I slowly made my way over to him and patted him on the back. “Well, me tell you about it.” My arm swung around with every ounce of force in my body.
I pitched my icy weapon into the fireplace and left without closing the door. I drove down the street and went into a bar and got very drunk.
The police questioned me and never suspected me after I told them our partnership had been dissolved.
Three days later I attended the funeral. I was the last person to leave the church. As I walked out, I stopped on the top step to watch the hearse drive away. I reached back to pull my collar up to shield myself from the cold wind when a cold crystal clear icicle fellow from the eaves of the church and slid down my back.
p.13 Capital City Star
January 2, 1973
Robert C. Johnson died today in front of St. Peter’s Catholic Church of a heart attack. He was attending the funeral of his former business partner, David R. Brown, who was mysteriously murdered earlier this week.
The header on the original manuscript says it was for English VI, March 16, 1970.
The teachers notes written by hand in red ink on the story worth follows…
On the front cover she wrote “Very clever story-Good use of words. Good introduction A-”
There were numerous spelling errors such as spelling “always” as “allways”. As she read the story to the class she said to me “You know better than that.” The truth was I didn’t. I’m a terrible speller.
On the last page she wrote “I like the ‘irony of fate’ending.”
Then she attached a handwritten note as follows…
This is a great story! You have a natural knack for telling a tale. This one is suspenseful and well organized. Your sentences and phrases are well formed.
The “better mouse trap” gimmick is worth repeating or at least mentioning, a second time.
About the title – Why not “A Partnership Dissolves”, using of course, a play on the word “dissolved.”
As for myself, I prefer the story to end with – “… our partnership had been dissolved.”
Knowing when to quit is a neat trick to learn.
Many thanks for sharing your story. You have the potential for a “selling” author.Mrs. Allen
I had remembered her saying to me in person that I could’ve shortened the ending and repeated the comment “know when to quit.” But I seem to recall in person she simply suggested leaving off the news article and ending it with the icicle down the back. But her notes say that it should end after the police questioned me. On the other hand she liked the ironic ending so that speaks to leaving at least the irony and perhaps cutting the news article.
One other item after discovering this actual copy of the story… I was positive that I had used the phrase “recombinant DNA” as a technobabble catchphrase for the way that the poison worked. I was surprised it wasn’t there. It was a sort of genetic solution but I didn’t use that phrase which was a big catchphrase in 1970 in the world of genetics.
So there it is. My first great work of science fiction mystery published online for the first time ever in broad public. I hope you enjoyed it.
This is the third in a continuing series of posts about my experience (limited as it is) as an author. Click here for a complete index of all the stories in this series.
It began… with an invitation in a small hand addressed envelope. The end result has been a serious reevaluation of my life goals.
If you have been following my Author’s Journal series, you know that I like to have a killer opening line or a killer opening paragraph. It just so happens that the above paragraph (with a couple of extra words thrown in where the ellipsis is) is the opening paragraph of an article I wrote for Indianapolis Monthly Magazine that was published in the September 1987 issue. The story was titled “The Reunion”. That opening paragraph also serves as an appropriate opening paragraph of this particular story about how “The Reunion” came to be.
I’ve already written a blog page giving some of the background of how I wrote the article but I think in this version I’d like to go into a little more depth. If you have never read my article, I’m going to suggest that you stop now and go read the article first. If you don’t have time to do that here is a brief overview of what it was about. Here is a link to “The Reunion”
“The Reunion”: Cliff’s Notes Version
“The Reunion” is an autobiographical true story of a class reunion I attended at James E. Roberts Public School IPS #97. The school was built in 1935 as a school for handicapped children mostly in response to the polio epidemic. It was one of only 2 special education schools in the entire state of Indiana when I attended there from 1960-1973. The other one was in Gary Indiana. If you had any kind of handicap or disability anywhere else in the state of Indiana you could not go to school. The local school district would provide you with a homebound tutor which was a poor substitute.
In 1969 the Indiana General Assembly passed the “Mandatory Special Education Act” which required all school districts throughout the state to provide special education programs “in the least restrictive environment”. It’s a bit amazing that such a law needed to be passed because the Constitution of the State of Indiana required that all children be given a “Free and appropriate public school education.”
The legislature gave school districts 4 years to implement this law which was the year I graduated high school. My mother had worked diligently with an organization known as the Council of Volunteers and Organizations for the Handicapped (COVOH) to get the law passed. She often said “Sometimes we build our bridges behind us.” Meaning of course that even though I would not benefit from the law, future generations would. Most school districts created their special education programs integrated into regular school buildings. While you might need to take a long ride on a short bus to get to the special ed school, at least there was the possibility of interaction between special ed and regular ed kids. Wherever possible, handicapped kids were “mainstreamed” into regular classroom programs.
So while Indianapolis Public Schools had been ahead of the times by even having a special education school, after the passage of the Mandatory Special Education Act their segregated approach to special ed was behind the times. In 1986 the school was closed and all of the children were either mainstreamed into regular education programs or moved to a different special ed school that only served the most severely multiply handicapped children.
The envelope I received was an invitation to a reunion for all of the Roberts School alumni no matter what year they attended. It was to say farewell to the institution. For me it was an opportunity to look back, remember the good times, reflect on the bad times, do some forgive and forget kinds of things. If you want more details… read the article.
To understand how and why I wrote “The Reunion” you need to understand where I was in my life at that point. So here’s a little bit of background…
Although I attended Roberts School all the way through high school, my last three years of high school I only attended half days at Robert. The other half of the day I attended my local neighborhood high school Northwest High School. After graduating from Northwest I attended IUPUI and earned a BS degree in computer sciences. I worked for two years as a computer programmer at the Indiana University Department of Medical Genetics located in the research wing of Riley Children’s Hospital. After two years, I developed congestive heart failure and after recovering I no longer had the stamina to work an eight hour day. I attempted to start my own work from home computer consulting and programming business that I called Cyborg Software Systems, Inc. However it never really went very far. It wasn’t so much a career as it was a hobby that barely paid for itself. I ended up putting more money into the business than I took out. By 1986 I had pretty much given up on it.
Although I was an active volunteer at my church teaching the Catholic faith in Thursday night classes for people who wanted to convert to Catholic, and I was active in other church activities, I really wasn’t doing much with my life. I spent a lot of time on the CompuServe online network which was sort of a predecessor to the Internet. Working as a moderator of an online discussion forum I was able to access CompuServe for free. It was very expensive costing approximately six dollars per hour to connect. I could not have afforded it without the free access.
I was doing a lot of writing at the time. Most of it was a personal journal that I would occasionally share with online friends especially a woman named Pamela Bowen who was a newspaper editor from Huntington West Virginia. Her professional opinion meant a lot to me and she convinced me that I had a way with words.
One of the problems with all of the online writing that I was doing and journaling that I was only sharing with a small number of friends was that it seemed like I was spending more time writing about life than actually living it. I would go out. Have some experience. Sit in my office all alone and write about it for a week. And then maybe get the courage to go out and do something else.
If you read the entire article you can understand what an emotional experience it was for me to attend the reunion. This was something that was going to require a lot of introspection and journaling to work through everything that it happened and all of the memories that were dug up as a result of attending the reunion.
Rather than just share these thoughts with one or two friends online, I begin writing the story of the reunion as a series of messages in a disability discussion forum on CompuServe. You may have noticed that the format is slightly episodic and that’s how it was originally written as a series of I’m thinking perhaps a dozen separate messages.
The reaction to the story was phenomenal. Lots of people online had wonderful things to say about it. It wasn’t just my editor friend Pamela although she thought it was great as well. I printed out copies and shared it with family and friends who were not online. There was a growing pressure from everyone who read it that I should try to get it “published for real” because in those days online publishing didn’t really count for anything.
Of course telling the story was a catharsis for me. It was a way of getting it all out of my system and putting it all behind me. I didn’t really want to deal with the issues once I had written it all down. It’s sort of like one of those spiritual exercises where you write a letter pouring all of your demons out onto paper and then burning the page afterwards.
Enter the Enneagram
I don’t recall when I first heard about Enneagram but I think it was perhaps a few months before I attended the reunion. The Enneagram is a psychological theory of human personality that is based on ancient teachings of Sufi mystics from Afghanistan and dates back nearly 2000 years. As a modern psychological theory it didn’t take off until the late 1970s and early 1980s. In 1984 Maria Beesing, Robert Nogosek and Patrick O’Leary published a book titled “The Enneagram: A Journey of Self Discovery”. My friend Judy Chapman attended a weekend seminar with Patrick O’Leary at the Beech Grove Benedictine Center. She came home very excited about it and loaned me a copy of her book.
The Enneagram postulates that there are 9 different personality types. It’s not the first system of classifying personalities. You’ve probably heard of Type A, Type B, and Type C personalities. There is also something called the Myers-Briggs Type Indicator which has 16 different personality types. While most classifications of personalities can be determined by test, Enneagram does not lend itself well to such methods. Other personality types such as Myers-Briggs is based on “conscious rational choices”. The Enneagram however goes deeper and asks what is your inner motivation behind your external behaviors. The only way to accurately know one’s Enneagram type is to take a course on the subject under the guidance of a skilled facilitator and then to try to discern one’s own type from that knowledge. If someone tries to tell you your Enneagram type then you don’t really own it and you cannot benefit well from the insights obtained through the study of the system.
I could write an entire book about the Enneagram so I’m not going to go into much detail here. (In fact I narrowly missed out on the opportunity to write such a book but that’s a story for another day.)
Short version is that Enneagram has 9 personality types numbered 1 through 9. There is no value such as one is better than nine or vice versa. It turns out I am a type FIVE. We are basically introverted, knowledge seeking people who live inside our heads. We observe the world but don’t often participate in it. Maria Beesing who was one of the authors of the book taught my first Enneagram retreat weekend course. She told a parable about a type FIVE. (There is an embarrassing story about my initial misunderstanding this parable that I will tell elsewhere someday.) The parable goes something like this…
Once upon a time there was a FIVE who had spent their entire life collecting knowledge. One day they decided that their gift to the world would be to write down everything that they had ever learned. They went to an upper room in their ivory tower surrounded by great tomes of knowledge. Books piled to the ceiling everywhere. They begin frantically writing down all of their collected knowledge. During the process they realized how incomplete their knowledge was in certain areas so they studied more and more books trying to complete this great work. They became so obsessed with writing that they forgot about everyday necessities like sleep, hygiene, food. Eventually they died of the effort. Someone else came along and discovered them. They took care of the body and then set about cleaning up the room. They could not make heads or tails of all of the writing because it was not yet organized in a coherent form. They gathered up all of the papers and destroyed them.
Although I had already discerned myself to be a type FIVE, this particular cautionary tale really convicted me. That’s what I had been doing with my life. My office was my ivory tower. I would sit and write for hours at a time only occasionally coming out to get more input for what I was going to write. And although I did share it with very few people, is the idea of putting it out in public for everyone to read was antithetical to my nature. One of the other stories they tell about a FIVE is that they are the kind of person who will not loan you a book for fear it will come back with the pages empty.
I mentioned that I did some teaching at my church. The way I would typically prepare a lesson would be to study the topic and have about 10 times more information collected in my head than what I would actually share in the lesson. Another indication of my Enneagram type. But I also could see the personal rewards that I got when I did share my collected knowledge. With the positive feedback I had gotten about the reunion story from online friends, real-world friends and family perhaps trying to get it published wasn’t such a bad idea. If I was going to break out of the compulsive behavior of an unredeemed FIVE, I think I needed to try publishing so that this work wouldn’t stay in the ivory tower and get thrown out with the trash.
Indianapolis Monthly Magazine
Somewhere along the way I saw a TV interview with a woman named Deborah Paul who was the editor of Indianapolis Monthly Magazine. She said, “I never feel like an experience is complete until I’ve written about it.” Now there was a person who understood my perspective. I could have said that same thing. So I figured if I submitted an article to them, it might be well received by a person who thought that way.
I took the online messages and merged them together into a slightly more cohesive narrative. Fixed some spelling errors and cleaned up some grammar. I submitted it to the magazine sometime late in 1986 or perhaps early 1987 I don’t recall exactly when.
A few weeks later I got a note back from Ms. Paul saying that she was about to send me a nice rejection letter but she started reading the article and couldn’t put it down. She didn’t know what to do with it. She showed it to some of the other people at the magazine and they didn’t know what to do with it either but they found it quite compelling. She said she would get back in touch with me in a few weeks.
The follow-up was a phone call from her. She said that there were problems with the article.
- They never publish first-person essays
- It doesn’t fit the format of the magazine
- It is way too long
She finally decided that just because they never published anything written first person before didn’t mean that they couldn’t start doing it now. She said “I am the editor and if I want to change the format of the magazine I can do it.”. Unfortunately it was still way too long. She said to me “You put your soul on paper. I’m sorry to say we only want half your soul.” She gave me the option of taking it somewhere else and hoping that they would publish it or having them publish a stripped down version. While she could have edited the article herself she realized that it was such a personal matter that she wanted to give me the opportunity to resubmit a shorter version. I very gladly agreed.
Ultimately what was published took out a few more paragraphs than I took out in my edited version and she actually added back in a couple of items that I had taken out.
Because it was somewhat school related they decided to hold it until their September 1987 issue.
After it was published, they routinely had a first-person feature in many other issues (even though I think some of them were ghostwritten by staff members based on interviews).
I’ve already chronicled some of the events that occurred after the publication of the article. The short version is that the magazine won awards for publishing my article and several other human interest stories. And I won “Best Magazine Feature of 1987” awarded by “The Indiana Chapter of the Society of Professional Journalists – Sigma Delta Chi”.
Please take a look at this article titled “Making of the Reunion” for more details about the awards and some contact I had with people mentioned in the article. I also dug out some old VHS tape that I shot at the reunion and uploaded it to YouTube. I also wrote about what the old school building is being used for now. It has been turned into an apartment building. Read all of that in this article which also includes a link to the YouTube video shot at the reunion event.
If you read the end of the reunion article, I had come to the conclusion that I was going to not just live my life in the ivory tower (although I didn’t use those words). I talked about applying my computer skills to assistive technology for the handicapped, I talked about not giving up on pursuing relationships with women, and I speculated that I would write a book perhaps an autobiography.
That first goal I’ve been pretty successful. I write tutorials on the Adafruit Learning System about various assistive technology devices I’ve invented. Here is a link to the technical articles I’ve done for them. Although I never have gotten married. I did have several more very successful relationships with women. And I did write a book. Actually 2 editions of a book. It wasn’t the autobiography I was planning on writing. I was concerned that would be too introspective and put me back in the ivory tower. But I did publish a book about computer graphics which will probably be the topic of the next installment in this series.
When I attended my third Enneagram seminar in August 1987 right before “The Reunion” was published I got to thank Maria Beesing for everything she had taught me about Enneagram and I told her how I had gotten down from my own ivory tower and gotten published on my first attempt. I later shared with her the story of the awards it won. I attended a total of 10 Enneagram workshops including a two-week training program which certified me to teach the course that Beesing and O’Leary teach. Although I have not taught that particular course I have integrated Enneagram topics into other teaching that I’ve done. There are dozens of other stories I could tell about how the insights of this system have helped me grow personally and to understand myself more fully.
This wasn’t the only article I had published in Indianapolis Monthly Magazine but we will save that story for another installment.
The bottom line is that the positive experience I got from writing that article, getting it published, getting wonderful feedback, and actually winning a top award in its category have encouraged me to keep writing all these years. But I don’t let that writing be a substitute for actually living my life and I make sure that when I write something I actually share it with people.
This is the second in a continuing series of posts about my experience (limited as it is) as an author. Click here for a complete index of all the stories in this series.
In my previous installment, I talked about a short story I wrote for a high school creative writing class. Although it’s an interesting story and I was pretty proud of it, I never attempted to get it actually published. In this installment I talk about the first time I was actually published.
I’m not sure exactly what year it was but it was probably 1980 or 1981. This is the story of a two-part article that I wrote for a personal computer technical magazine. If you have a hard time following technobabble talk or are not interested in the early days of personal computing, you can skip this section called “Technobabble” and read about the actual article that I wrote and had published.
This was back in the days when personal computers were brand-new. Although you could run out to Radio Shack to buy a TRS-80 Model I off-the-shelf and there were a few computer stores where you could pick up an Apple ][ Computer, many of the people who were using personal computers built them from kits. You would buy a basic chassis with a motherboard. Motherboards these days contain almost everything your computer needs… your CPU, slots for memory modules, USB ports, and perhaps built-in graphics processing… the most common motherboard in those days was something called an S-100 Bus backplane. Except for perhaps a voltage regulator or some capacitors and resistors it had no active components. It was simply large a circuit board with a number of slots that had 100 pins each. You would plug-in various circuit boards whose edge connectors would fit into these slots.
My first personal computer was a Cromemco Z-2. It consisted of a huge box about the size of a microwave oven that was capable of being mounted in a standard mainframe or minicomputer mounting rack. It had a massive power supply with a transformer that was a cube about 5 inches each way. It had capacitors the size of concentrated frozen orange juice cans. And it had an S-100 bus.
Plugged into that bus I had a processor card with a 4 MHz Z80 processor. There was an EPROM card which if you’re not familiar stands for Electrically Programmable Read Only Memory. In those days nonvolatile flash memory had not been invented so if you needed to write something permanently like a boot loader or a bios you had to burn your own ROM. If you made a mistake or wanted to upgrade the firmware you had to take out the chip, expose it overnight to a strong ultraviolet light which would erase it, and then burn it again. I also had a board for I/O connections which included a serial port, a parallel port, and a cassette tape interface. Another board had 16 K bytes of RAM memory. And finally there was a board used to generate a video display that was 64 characters by 16 lines of text with no graphics. That board was connected to an ordinary 12 inch black-and-white TV set fitted with a little RF modulator tuned to channel 3. About half of the circuit boards I bought preassembled but the other half were kits. You got the circuit board ready-made and a bag of parts. You had to solder them in, clip off the extra wiring, bolt on a heatsink or two and then hope you did it right.
I bought the system shortly after the famous blizzard of January 1978 which shut down the city of Indianapolis for three days. I was working as a computer programmer at the time. During the shutdown, I sat around and read Byte Magazine and swore that as soon as things thawed out I was going to buy a computer. I ordered the first pieces on Valentine’s Day 1978 and it took my dad and I several weeks to get it assembled and up and running. Initially the only way to save or load programs was on cassette tape. I don’t remember how long after I got the initial system built that I decided I needed to upgrade by adding a 5.25″ floppy disk drive. Later still I added a second floppy disk drive. The floppy disk controller I chose was made by a company called North Star. They had their own line of S-100 computers but they also sold their disk systems separately. As was common in those days, their operating system and its formatting system wasn’t compatible with anyone else. Eventually they began to make available other operating systems that had been converted to use North Star hardware.
The most popular operating system for 8-bit computers with the exception of Radio Shack and Apple was an operating system called CP/M. North Star had its own DOS called NSDOS that was completely incompatible with CP/M. Eventually North Star did make CP/M available for those systems and I did purchase a copy that I used for many years. But before that came along, there was another alternative to NSDOS called the UCSD p-System.
This was a portable operating system developed at the University of California at San Diego. It was built around the Pascal programming language which was one of the first so-called “structured languages”. While early languages like BASIC or Fortran would let you write code where the flow of the program could jump all over the place in a confusing manner, Pascal was one of the first modern programming languages that forced you to structure things more carefully. It made programs more reliable and easier to read. Structured programming probably isn’t a term that a young programmer today would even understand even though every language you use now such as Java, C++, Python and others are structured languages.
Programs for the UCSD operating system would be written and Pascal and compiled into something called p-code. Then there was an interpreter which would actually execute the p-code. The idea was that once you had compiled a program into p-code we could then be moved to any other kind of computer whether it was a huge mainframe, minicomputer, or a personal computer with a different kind of CPU. There was a p-code interpreter for each of them. The UCSD p-System was later made available for the IBM PC as an alternative to PC DOS. Although this ability to move compiled programs to different kinds of computers was supposedly the big idea behind the UCSD system, I never used that capability and my guess is not many people except in university settings made use of that capability either. The UCSD system was just the best, easiest to use way to write programs in Pascal and that’s why I and many other people adopted it.
I really loved writing Pascal and I loved the way the USCD operating system worked. The major problem with all these different operating systems is that not only was the hardware incompatible between various manufacturers (only North Star could read and write North Star floppy disks), the way in which the data was written on the discs was incompatible. CP/M converted to North Star hardware still could not read NSDOS discs or UCSD discs and vice versa. Note again at the time I had not yet begun using CP/M but I did want to be able to transfer data files between NSDOS and the UCSD p-System.
I needed to be able to transfer files between systems because under NSDOS I had written a small text editor that could be used for rather primitive word processing. It was basically a version of the DEC-System-10 line editor called “line-ed” that I had been using at IUPUI. It wasn’t a “WYSIWYG” word processing program (What You See Is What You Get). It was just a line by line text editor. I called it CUTE which stood for “Chris’s Universal Text Editor”. It made possible lots of puns such as “I just wrote this CUTE little program”. My mom and I used that CUTE little program for ordinary word processing. But if I was going to switch to the UCSD system, I needed to recover my text files from NSDOS discs.
There were ways that you could do a raw read of any track or sector of a floppy disk using the BIOS of the UCSD p-System. So I wrote a program using UCSD Pascal that would read and interpret the file directory of an NSDOS disk and then locate the file itself and write it to a UCSD readable disk. It was actually two utilities. One would transfer from NSDOS to UCSD and another one that would transfer from UCSD to NSDOS.
I Got Published!
If perhaps you skipped the previous section the bottom line was that I wrote to little utility programs that allow you to transfer text files between two different kinds of incompatible operating systems. My programs converted files between North Star DOS and another operating system called the UCSD p-System. These were both somewhat obscure operating systems. Most people used something called CP/M but this had nothing to do with that. Now we continue with the story…
There was no Internet in those days and I’m thinking that I didn’t really get onto CompuServe until 1981 or 1982 and this was before that. So there was no way to share these handy little utility programs with anyone else except to try to publish an article about them. It was such a small niche of people who would even need them that I didn’t try for a big computer magazine like Byte or Creative Computing. But there was a small publication called “S-100 Microsystems” or sometimes just “Microsystems” that seemed like the kind of place that would be interested in these utilities. So I wrote an article about one of the utilities. My poor mother was given the task of proofreading it which was next to impossible with all of the technical jargon and it. The best she could do was look at spelling and punctuation. At the time we had an IBM Selectric typewriter that had been fitted with a series of solenoids connected to a parallel port. I had written a small driver that would send text over the parallel port and it would type on the typewriter. I used that capability to print out the article. I mailed it off to Microsystems magazine and began polishing up part two of the article about the conversion the other way. I did mention in my submission letter that I would be sending them part two in a few weeks.
The day after I mailed part two I got an acceptance letter for part one. They were going to pay me $200 for each of the two parts totaling $400. I was ecstatic! I was a published author!
Microsystems was only published six times a year and my articles appeared in consecutive issues. I proudly showed them off to friends and family. The little handwritten acceptance note from editor Sol Libes was tacked on my bulletin board in a prominent place. It was really too small to put in a decent frame. I don’t know where it is today. It might be stuffed in a file cabinet somewhere.
Also somewhere in this house (only God knows where) are those two issues of Microsystems magazine containing my articles.
My Second Publication
I thought that was the end of the story. I didn’t have any other clever programs up my sleeve so I had nothing else to write about. I thought maybe someday I will get another bright idea and try again.
I’m guessing it was about a year after my articles appeared that a package came in the mail containing a book titled “Programmers Guide to CP/M”. The cover described it as “an in-depth look at the most widely used microcomputer DOS in the world. Edited by Sol Libes Editor, Microsystems Magazine”. My thoughts were “Gee that’s nice. He published a book and I guess since I was one of his authors published in his magazine he sent me a free copy.” The book went on the shelf and I never bothered to look inside. Although I probably was starting to use CP/M by that time, I was learning enough on my own to use it and didn’t need to read a book about the topic.
By the way, I mentioned earlier I couldn’t find copies of the magazines where my article appeared. I did find a copy of this CP/M book and its copyright page says 1982 so that’s how I estimated when all of this occurred. Anyway on with the story…
Another several months passed and I got a check in the mail for another $400! It was for the republication of my articles in a book titled “Programmer’s Guide to CP/M”. I said WTF! I had my mom grab the book off-the-shelf and we looked at the table of contents. Under Chapter III “CP/M on NorthStar Systems was my article “DOS/BIOS Directory and File Conversion (Parts I & II) page 79”.
Under any other circumstances I would’ve been jumping for joy about getting published in a real book instead of just a magazine and indeed the extra $400 sure was nice. But in fact I was highly insulted. The title of the book was “Programmers Guide to CP/M”. Every other article in the entire book was about the CP/M operating system. My articles were in a section about CP/M on North Star Systems. Well… It was about North Star Systems but it didn’t have jack-shit to do with CP/M. If the editor Mr. Libes would make such a mistake by putting my non-CP/M articles in a CP/M book that told me he never really understood what the fuck the articles were about in the first place. The money still spent the same but it was a big letdown that my work really wasn’t appreciated for what it actually was!
I don’t remember if I wrote him a letter but I seem to recall I may actually have called the guy on the phone. Basically I thanked him for republishing my articles in the book and thanked him for the extra royalties. But I pointed out to him what I described as “an embarrassing situation” where my non-CP/M articles appeared in a CP/M book. I don’t recall if I got so nasty as to say something like “Did you not really understand what those articles were about?” But I certainly let my confusion and disappointment be known. His explanation was that the original title of the book was going to be “The Best of Microsystems Magazine” and that’s why my articles had been chosen to be reprinted. They had changed the title as a marketing ploy thinking it would sell more copies as a general CP/M handbook. Okay I thought so I’m “among the best” yawn. It still seemed more of an insult than an honor. My articles did have to do with North Star Systems and they were included in that section of the book with other articles about North Star. Maybe some North Star user would see them and find them useful.
I don’t remember in particular what I spent the money on. Probably some new program or hardware upgrade. The money still spent the same but it wasn’t exactly the kind of recognition that I thought it was going to be. I knew that Microsystems was a small (not quite as bad as fly-by-night) magazine that was only published for a few years. I knew it wasn’t the big time. But I certainly expected they did have an inkling of what it was they had really published.
I’ve not had another opportunity to write technical articles in print. However I do maintain a technology blog where I document a lot of my projects these days. I’m also very proud of the tutorials I’ve written for the Adafruit Learning System online. Adafruit Industries is a wonderful electronics company in New York where I buy all of my electronic parts. It’s interesting that the CPUs that I use in these gadgets note from Adafruit parts are more than a thousand times more powerful than that first giant microwave oven sized computer that was my first. One of the things I enjoy about tinkering with these tiny microcontroller boards is they give me fond flashbacks to those early days when you had to build everything yourself. Initially I wrote articles for the Adafruit Learning System in exchange for free parts to build the projects. But now they also pay me to write articles as well. At least I know that they really do understand and appreciate my work there. It’s been a very rewarding relationship working for them. Here is a link to the articles I’ve written for them.
In the next installment of my Author’s Journal I will talk about an award-winning autobiographical magazine article I wrote for Indianapolis Monthly Magazine.
This is the first in a series of blog posts I’m calling “Author’s Journal”. Click here for complete list of the articles in this series.
I’m seriously thinking about writing a novel. Or novella. Or novelette. I’m not really sure about the difference but I think it has to do with word count. And since I don’t know how long the story is going to be I won’t know till it’s done.
It’s going to be a sci-fi story. It’s an idea I’ve had rattling around in my brain for many years. If it should happen to get published it would be my first published work of fiction. I’ve always said that I know how to tell a good story but I’m not so sure I’m any good at making one up. That’s what has kept me from writing fiction up until now.
I’ve only been at this project for about a week and it’s been an interesting journey so far. I’m a little bit concerned the story of writing the book is going to be more interesting than the book itself. But anyway I decided I wanted to write about the process of writing as I do it. Normally I would share such items on this blog but I don’t want to spoil my story before I actually get it published. If it turns out it doesn’t get published then I will put it online for free anyway along with the Journal of how I wrote it.
Author Andy Weir wrote his famous sci-fi novel “The Martian” which was later made into a hit movie with Matt Damon. He put chapters online for fans to read as he was writing it. Soon his fans requested he publish it in e-book format so they could read it off-line. He put it on the Kindle store and wanted to give it away for free but they wouldn’t let him. The minimum price he could put on it was $1. Eventually a publisher bought the rights to make a print version and he sold the film rights making a fortune. I don’t know that I want to risk that. So for now I’m not ready to share the story nor the story of how I wrote the story. But maybe someday.
I can however tell the story of how I wrote my previous published works. So that’s what I’m going to do in this new series is go back and talk about the other things I’ve had published (all of them nonfiction) because that stuff is already out there and it won’t spoil the story. Here is the first installment of my “Author’s Journal”. Or I suppose we take a page from moviemaking and call this “The Making of… whatever”.
Okay change of plan already. I said I’d never had any fiction published and that’s true but I want to talk about one piece of fiction that I wrote for a high school creative writing class. It’s the first thing I wrote that anybody ever had anything nice to say about and I was pretty proud of it so if we’re going to start at the beginning of my “career” as an author we need to start with the short story I wrote in high school.
I’m guessing it was probably my junior year at Northwest High School. My regular English teacher had a week or two off for some reason. It might’ve been my one teacher who took time off to get married but I’m not sure that was this particular time. I know I did have a teacher who took a brief leave and we had a substitute. I wish I could remember the name of the substitute but she was absolutely awesome. I remember discussing her with my friend and classmate Dennis Adams. We agreed that the reason it was a good thing she was a substitute teacher was it would’ve been a shame to share her gifts with just one class. She really had a way of bringing out the best in her students.
Anyway we had to write a short story. There is an adage that says “write what you know” and so I decided to write a bit of science fiction. That was 95% of what I read in those days (and still is).
I stole the basic premise of the story. My dad had told me he had read a story or seen a movie somewhere sometime where a guy got away with murder by stabbing someone with a sharpened icicle. The murder weapon had melted and evaporated leaving no trace of the weapon or fingerprints. I decided to steal that idea as the basis of my own little murder story.
I need to explain first that everything I know about writing short stories I learned from Edgar Allen Poe. Most notably from his classic short story “The Cask of Amontillado”. The complete story can be found at that link. The opening line of the story is “The thousand injuries of Fortunato I had borne as I best could, but when he ventured upon insult I vowed revenge.”
That’s the whole story in one sentence. Everything that follows is simply the details. It doesn’t explain who Fortunato was in any detail. It doesn’t say how he injured the author. It’s just the story of how he plotted revenge. He lured him into a basement wine cellar for a taste of amontillado wine. Then he shoved him into an alcove, chained him to the wall, and sealed up the alcove with bricks burying him alive.
This shocking and brutal ending is what most people remember about the story, but for me it’s that opening line that is so important. In one brief sentence he really told you the entire story. To me that is the absolute essence and perfection of the short story form. That’s what I wanted to go for.
So back to my semi-plagiarized sci-fi murder mystery. We were going to commit the perfect murder by stabbing a guy with an icicle. But why would we want to commit this murder? It is not exactly a crime of passion. You have to get somebody to a place where you have an icicle handy. You have to prepare it to a sharp point and keep it cold until you can do the deed. This clearly had to be premeditated and carefully planned. After all you don’t commit the perfect murder by accident.
It takes three elements to commit first-degree murder: motive, opportunity, and means. We had the means with the icicle. We could craft an opportunity. But what was the motive. Poe didn’t give one in his story. It was just an insult of some kind but we never learned exactly what.
Somewhere along the way I came up with the idea that committing the perfect murder was something that had been pursued ever since Cain slew Abel. Although I believe people are fundamentally good, there is always something inside us that tempts us to do violence against our perceived opponents. We’ve always been searching for the perfect murder. It’s one of those eternal quests like building a better mousetrap.
Wait a minute!
What did I just say?
My muse had spoken. I had my opening line. I had my hook that would tell the entire story in one sentence and draw you in to make you want to read more. I had my Cask of Amontillado opening line which read as follows…
“Man has always had two great ambitions. To build a better mousetrap and to commit the perfect murder. I have accomplished the latter on the man who accomplished the former.”
That was my entire story in one sentence (well actually three) but certainly one short paragraph. Somebody built the better mousetrap. The only reason you would want to kill such person is that somehow he cheated you out of that honor. So our perpetrator and victim were business partners. The “I have accomplished…” means the story will be told first person in the same way that Amontillado was told. Like amontillado it was a revenge story.
So I wrote the story. I already had my method to commit the so-called perfect murder with the melted murder weapon. Now I had to build the better mousetrap. That’s where the sci-fi elements came in. Our inventors used recombinant DNA (a big catchphrase in the 1970s for genetic manipulation) to create a virus that would be deadly to mice but harmless to any other species. Our victim and narrator were business partners. The business went downhill and went bankrupt. Then one partner started a new business and suddenly had a breakthrough that made him a millionaire for building a better mousetrap. Our narrator was certain that he had developed the idea previously but ran the business into the ground so he could start over and keep the profits to himself.
Apart from the big opening line, I had also learned the beauty and ingenuity of a plot twist. Something shocking at the very end of the story that gives the reader something unexpected. You grab them at the beginning. You lead them on a journey. You have to finish on a high note as well.
So I had our narrator standing on the steps of the church after his partner’s funeral gloating as the hearse pulls away. It’s still a cold winter day and a gust of wind comes along. He reaches to pull up the collar of his coat around the back of his neck and as he does so, and icicle breaks loose from the eaves of the church and slides down his back. The story then concludes with a newspaper item saying about our narrator had died of a heart attack on the steps of the church just after the funeral of his friend and former business partner.
The substitute teacher whose name I still can’t remember absolutely adored the piece. She read several excerpts from some of the best stories in the class but she started with mine. She heaped praise on the piece especially focusing on that opening paragraph. She said to the class “I’m going to read you this opening paragraph and I want you to guess which of your classmates wrote it”. She read the paragraph and at least three people identified it as mine. I don’t know what about their opinion of me lead them to identify me but I couldn’t have been happier.
Then she pointed out that I had misspelled “always” as “allways” and looked at me and said “You know better than that”. I didn’t have the heart to tell her I really didn’t 🙂 I’ve probably told the story before that several of my elementary school teachers exempted me from so-called “busywork” such as spelling drills and math drills because they thought I was so smart I didn’t need them. To this day I can’t spell worth a damn and I can add a column of numbers three times and get three different answers. God bless spellcheckers and spreadsheets.
My favorite substitute teacher concluded her review of my work by giving me a piece of advice which was “know when to quit.” She thought that the news clipping at the end was unnecessary. I guess I wasn’t confident that the reader would know that the guy who killed someone with an icicle was killed by an icicle. I’ve not really had much of an opportunity to apply that lesson but I’ve never forgotten it. Although the advice was “know when to quit” it really was in essence “trust your audience.” I try to do that.
At the end of the semester, they give you a folder with all of your homework in it so you can review your grades. But they want you to turn it back in so that you can’t sell your term paper to someone next year. I kept my copy of the story when I turned my folder back in. I don’t remember the name of the story. I’ve got that copy around here somewhere and if I find it I will post it online.
Even though the piece I’m working on now is going be longer than a short story, I still needed an attention grabbing opening line. It’s got one. I won’t spoil it for now. Not quite as good as the better mousetrap versus the perfect murder but still enough I hope it makes you want to read more.
In the next installment of this series I will talk about the various nonfiction things that I’ve written and have had published. Stay tuned.
Over the past couple of days I have watched every minute of the historic flight of American astronauts to the International Space Station aboard a SpaceX Falcon 9 rocket and a Crew Dragon capsule. After nearly 10 years of having to send our astronauts into space aboard Russian rockets, we finally have the capability to launch Americans from American soil on an American rocket. I could not be happier about the entire situation. The top photo above shows our three American astronauts aboard the International Space Station along with their two Russian cosmonaut crewmates after the successful docking of the Crew Dragon Demo-2 capsule.
I grew up during the space race of the 1960s. I remember watching Alan Shepard aboard Freedom 7 flying a suborbital mission on May 5, 1961. I watched it on TV in my kindergarten class while my classmates complained that “Captain Kangaroo” had been preempted. I tried to explain to them “Don’t you get it? This guy is going to be the first American to ride a rocket into outer space! That’s much cooler than Captain Kangaroo!”
I watched on TV every minute of every launch throughout the Mercury, Gemini, and Apollo programs as well as many space shuttle launches. I built models of Mercury, Gemini, And Apollo capsules and rockets as a kid. It is rare that I miss coverage of any current SpaceX launches. I’m a huge fan of Elon Musk the billionaire entrepreneur engineer genius founder of SpaceX and Tesla. I visit multiple YouTube channels to follow the daily progress of the construction and testing of his new Starship rocket which will someday take astronauts to the moon and eventually to Mars. Every man or woman who is ever been to outer space is one of my heroes. I admire them and the teams are dedicated people who put them there.
To put it succinctly… I’m a space fan.
However I am disturbed by some of the questions that have been posed to the astronauts, NASA officials, and Elon Musk about the “inspirational value” of this most recent achievement. Now don’t get me wrong, I’ve been inspired by the entire space program and I am inspired by what Musk and company have accomplished. It’s a great achievement. But the questions being posed go something like “Given all the turmoil we have in the world today regarding the pandemic and the violence in the streets don’t you think that this accomplishment shows what people can do when they work together?”
The question is often placed in the context of what the US space program did for us in the late 1960s. Set your “Way Back Machine” to 1968. We were at the height of the Vietnam War. There were protests in the streets over the war. There were riots outside the Democratic National Convention in Chicago and other places. Presidential candidate Robert F Kennedy and civil rights leader Dr. Martin Luther King Jr. were assassinated. The country… the world… needed inspiration and hope.
In some small measure, the accomplishments of American astronauts provided that healing sense of hope. It began on Christmas Eve, December 24, 1968, in the most watched television broadcast at the time, the crew of Apollo 8 gave a solemn and inspiring reading from the Book of Genesis as they orbited the Moon. It culminated with the landing of Apollo 11 on the moon on July 20, 1969. I remember every detail of those events as I watched them unfold on TV.
Among the things that gave us perspective on our lives and our planet was a photograph taken by Apollo 8 that has come to be known as “Earthrise“. It showed our tiny blue planet rising over the moon as seen by the crew of Apollo 8. See the image at the top of this blog. (credit to NASA) It was not only an inspiring image but it was one that truly gave us a different perspective. Lots of inspiring events claim to “change our perspective” but this was literally a prospective that had never been witnessed by human beings before… the image of our planet as seen from farther away than any human being had ever traveled.
Nothing can completely heal the wounds of the turmoil we experienced in the 1960s. The 1970s with the continuation of the Vietnam War and our own subsequent abandonment of it as well as the damage to our faith in government brought on by the Watergate scandal continue to haunt us to this day. But the events of the Apollo program, while not curing us of our social and political turmoil, did provide an important and significant reminder that the human race is one race and we share this planet together. It’s the only one we’ve got.
Elon Musk is concerned about the fact that it’s the only planet we have. His primary motivation for getting us to Mars is so that we will not be a single planet species. He idealistically believes that the human race can only be saved if we have another home besides Earth. Agree or disagree. He’s a man with a vision.
While the accomplishments of the Dragon Demo 2 mission are an important step to our future exploration and commercialization of space travel, they just don’t have the power to heal us or inspire us in the same way that Apollo did. Our perspective today is no different than it was a week ago.
Let’s be brutally honest about what really happened here. Let’s answer the question much less diplomatically than the astronauts, NASA officials, or Elon Musk have been when answering the question “Can this mission inspire us out of our current turmoil?”
The answer is no. Mostly because this isn’t 1968. Things are much different.
In the 1960s we believed that the Soviet Union was an existential threat to our country and to democracy around the world. Our need to demonstrate our superiority over them was more than just bragging rights. The potential militarization of outer space was a clear danger. Our need to exhibit our mastery of space travel was an important element of the Cold War.
The quest to land human beings on the moon was initiated by John F. Kennedy and sustained by his successor Lyndon Johnson. In a famous address, Kennedy explained that we go to the moon “not because it’s easy but because it’s hard”. An underlying justification for the race to the moon was to be an inspiration and a demonstration of our capabilities as a country. Furthermore the Kennedy and Johnson administrations were both dedicated to and in a large part responsible for civil rights reforms in the 1960s. They were administrations who were actively trying to transform our country into one in which the phrase “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” were not just words on an ancient piece of parchment. Those words are among our founding principles to which we must continually strive to make a reality.
But we don’t live in 1968. Elon Musk is not JFK. Elon Musk is a businessman who intends to turn a profit. Although his underlying justification for being in rocket business is to “save the human race from being a single planet species” that comes across as ridiculous hyperbole to most people. We don’t live in 1968 and Lord knows Donald Trump isn’t LBJ. The accomplishments of Crew Demo-2 do not represent a giant leap forward in space exploration. Instead it’s a long overdue fix to a problem that should’ve been solved (and could’ve been solved) 10 years ago if we had had this program in place prior to the retirement of the space shuttle. It doesn’t change our perspective of the earth or of the capability of human accomplishments. Although it represents a new way of doing things in space it doesn’t really break new ground.
Let’s be even more brutally honest. Does Crew Demo-2 provide us with “hope of what can happen if we all work together?” I’m an old white guy who loves everything space related but I am offended by that question in that context.
Let’s rephrase it… “Does the event of 2 college educated, military trained, white guys flying aboard a rocket built by a billionaire white guy who made his billions in the dot-com boom and selling luxury cars give the average young black man hope that he will NOT be murdered in cold blood by a racist police officer with more than a dozen previous complaints against him? Do these SpaceX and NASA employees with high paying government jobs that have continued to work throughout the pandemic give hope to the average middle-class American who is unemployed (along with 20% of all Americans), or to those employed in a job that potentially exposes them to a deadly virus?”
The answer to both is fuck no!
And I am offended by anyone who thinks it could.
Yesterday I went to Eli Lilly’s drive up COVID-19 testing facility to get checked for the virus. I’m going to tell you about that experience and then I will tell you why I think we are in deep trouble.
My Testing Experience
It all started on April 17, 2020 when I learned that one of my home health aides had been exposed to the Corona Virus. That same day I developed a fever of 101.2°. Although I was able to get it under control with Tylenol easily, I decided to call my doctor on April 20. He prescribed a Z-Pak antibiotic and told me that if I got worse or cannot control the fever to go to the ER.
The next day I was informed that the aide who had been exposed to the virus had tested positive. I called my doctor back again to tell him I was still doing well but the test on my aide had come back positive. After brief discussion we decided I should go to the Eli Lilly drive-up testing facility. The problem was… I was stuck in bed. One of my other aides having learned that I have a fever and had been exposed to someone who had tested positive, decided not to come back to work with me. I can’t really blame her. These home health aides only make about $11 per hour and she has children and a family to consider.
I didn’t want to try to schedule the test until I was certain I had someone to get me out of bed. I finally got a replacement aide on April 24. She did so wearing full PPE consisting of a mask, gloves, and a paper over garment. After I got up I called to schedule my testing appointment.
The registration process included emailing them the written orders I had from my doctor. their requirements are that you be a first responder such as police or fire, be a healthcare professional, or be symptomatic over 65, or be symptomatic and be at risk for other health conditions. With my disability, limited lung capacity, and a variety of other medical issues I fit into the last category. There was only one catch… By the time we got thing scheduled, my fever had subsided. Technically I was no longer symptomatic but I didn’t tell them that. I told them that I was at risk which was true. I told them I had recently been exposed to a healthcare worker who had tested positive which was true. And I had my written doctor’s orders.
After going through the registration process, they assigned me a time of 10:15 AM the next day Saturday, April 25. Unfortunately my home health aide usually arrives at 9 AM and it takes at minimum 90 minutes to get me up and dressed but considering she was new it was going to take at least two hours. There’s no way I could be there at 10:15 AM. The only option was to call back later in hopes of getting a later time. They could only assigned you the next available appointment. You could not pick a later time.
I called back a few hours later and managed to get an appointment for 11:30 AM. It turns out my aide was going to be coming a little bit early and we would be able to meet that time. This was a Saturday and they were only going to be open until 1 PM. They would be closed Sunday so if I waited much longer I would be getting a Monday appointment and it would likely be early morning. So I took what I could get.
Saturday morning I got up and we drove down to S. East St. at about the 900 block. The line of cars waiting to get into the facility was more than 2 city blocks long. We were going north on East Street and had to go down and go around the block to get headed southbound and get in the line. By the time we did that, the line was even longer. We ended up making a U-turn in the middle of East Street which was otherwise pretty much deserted. We arrived in the line at about 11:25 AM five minutes prior to my scheduled appointment.
The line was barely moving but it did move. The first check-in station on East Street about a block away from the entrance to Eli Lilly had people standing there in orange vests. They would hold up a sign with a phone number so that you could talk to them without rolling down your window. Signs everywhere warned you “Stay in your car. Keep your windows up”. We had been warned we had to have a fully charged cell phone available.
Apparently in addition to the testing, there was also sign up for something else and I think she said it was a clinical trial of some kind. Depending on what kind of testing you were getting or whether you were signing up for this “something else” you would get a different colored ribbon of crêpe paper tied onto your side view mirror.
My biggest concern about this entire process was that from what I had seen on TV, you would pull up to this drive-up testing, you would roll down your window, and they would swab your nose through the window. Of course I would be sitting in the back of my van with Barb driving and there was no way I could lean out a window. I was fully prepared to raise a big stink if they refused to test me. Barb kept trying to calm me down about that. At the first check-in station on East Street we told them that I was the patient in the back of the van and that we could open the doors and let them into test me but I couldn’t get my head out the window. The rear windows on the van don’t open. The girl we were talking to over the cell phone called over her supervisor and the supervisor called ahead. After a brief minute she seemed they would work something out.
Eventually we made our way to the entrance and turned off of East Street into the Eli Lilly campus. The lawns were perfectly manicured. There were lots of trees and the dogwood trees were in full bloom. It’s a gorgeous looking place. We went another hundred yards or so and then the people directing traffic started letting the pink ribbon people cut the line. We had a green ribbon. Apparently the pink ribbon line was moving faster.
The line eventually turned into a parking garage beneath the facility. We turned left and the pink ribbon people went straight. The cars would pull up in 2 lines with 4 stations on each line. Again they would hold up a sign giving you a cell phone number and you would call it to speak to a person sitting at a table with a laptop computer. They asked us a confirmation number that we had printed from the confirmation email. With that number they knew my name and confirmed address date of birth etc. to make sure it was really me. They then put together a plastic bag with my testing supplies in it and my name written on the bag. A guy placed it behind our windshield wiper and we drove on to the final station.
Up until now, people were wearing regular street clothes or perhaps an orange vest. I think some of them were probably wearing masks. But at the final testing stage the workers were in full hazmat suits. They looks a little bit like those Tyvek paper suits but I’m pretty sure it was head to toe. Their head was completely covered and it was a hose coming out of the top of the helmet. We explained to them again that I was in the back and I was the one who needed to be tested. We opened up the side doors and let down the wheelchair lift. The woman doing the testing climbed in the van and stuck a long swab up both of my nostrils. I couldn’t turn my head so she had a little trouble getting the left one but we got it done. They gave us some paperwork including a code number that we will use to get my results from their website. It was now about 12:30 PM so it took about an hour in line.
Overall it looks to me to be a very smoothly run, well designed, efficient process. I think if they hadn’t had more than one kind of thing going on at the same time, the wait time would have been shorter but I can’t say that for sure. Even though it was a bit frustrating at times, looking back I can’t see how it could’ve been run any better.
Why We Are in Trouble
Even though my experience went relatively smoothly, I have to think about all of the things that could’ve gone wrong.
First of all… What if I hadn’t found an aide who could get me out of bed? What if I was completely bedridden? I had discussed this possibility with my doctor when we first talked about doing the drive through testing. My only option would have been to call an ambulance and have them transport me to St. Vincent ER to be tested. That would’ve exposed me to an ambulance gurney, a pair of EMTs, and the environment of emergency room and the workers and their. While we would hope that all of those would be safe and sanitary, the truth is we’ve had hundreds of such people catch the virus and sadly many have died. There is a strong possibility I do not have the virus. If I did, my doctor and I both believe I would be sicker than I am. But if I couldn’t get out of bed to get tested, the process of getting me tested would’ve exposed me to not only COVID-19 but who knows what other diseases? Not to mention the expense of 2 ambulance rides and an ER visit. I’ve already discovered the only way to get Medicaid to pay for an ambulance trip is to call 911 and tell them it’s not an emergency. To schedule a routine doctor visit for example and be transported by ambulance you have to schedule 2 days in advance and you need confirmation from the doctor that you absolutely have to be seen in person and that you have no other means of transportation.
I was in a kind of Catch 22. It was going to be hard to get an aide to come take care of me when my virus status was unknown. However I couldn’t get tested unless an aide would come get me up. The bottom-line is we need a system of visiting nurses or doctors who can test at risk people in their homes.
While Barb thinks my fears that they would not have tested me in my van were overblown, and in fact we had no problems with that issue, it could’ve very easily turned out differently. People are living by very strict rules these days. At least the responsible people are. They might’ve had a rule that said under no circumstances could one of the test personnel enter a patient’s vehicle to perform the test. As unfortunate as that would be for me and as insulted as I would be, I sort of understand why they might have that kind of rule.
If you have watched the news lately, there was a feature with a woman who had a disabled daughter. They wanted to take advantage of the bicycle and hiking trails at Eagle Creek Park. But the parks department has closed the park to all but pedestrian traffic. She wanted to drive in to the grounds to unload her daughter in her wheelchair so that they could go hiking. The park refused to make an exception and suggested she could drop off her 10-year-old daughter at the gate, go park somewhere else, and then catch up with her. Yeah… Like you’re going to leave your 10-year-old child unattended at the entrance of a public park. Do that and you could get arrested for child endangerment. Even after the TV station contacted the parks department, they refused to budge. That kind of inflexibility and accommodation for people with disabilities is quite common. And to be honest while the park situation was ridiculous, I could understand why people might want to refused to enter a vehicle to test the patient. The bottom line here is we need assurances that tests are accessible to people with special needs even if they can get out into the world. Although this went well, it doesn’t take any imagination to think it could’ve gone badly. Trust me on this.
I have to ask, what if I had been honest and told them my fever was over? I would’ve been completely ineligible for this test. As it turned out, later that day after I got home from the test, my fever did return slightly up to 99.1°. While that doesn’t seem like much, my normal temperature is about 97.8°. The Tylenol took care of it easily but at the time I was taking the test, I had been completely symptom-free for more than three days. What do you do when you know you are at serious risk, at risk of infecting others, have been exposed to someone who is positive? What do you do? If my fever had gone up the day before instead of the day of would’ve been clearly eligible and not had to stretch the rules of the system. Depending on when that fever actually returned I might have really had the fever sitting there in line and getting tested.
I did a Google search asking where else I might be able to get tested. Here is the link to the search I did. In addition to the Eli Lilly facility several hospitals are doing testing. The VA hospital is for veterans only and only if they are symptomatic. Ascension St. Vincent has basically the same rules as Eli Lilly. You have to be first responder, healthcare worker, at risk and above all symptomatic. Community Hospital doesn’t say what their criteria are. They just say to call for a virtual doctor visit and then they will advise you what to do.St. Francis hospital system says that depending on their available supplies, the rules on who can be tested might change daily. Basically they are saying they are rationing supplies for testing. It’s obvious that the other testing centers are limiting testing to certain priority groups because of the lack of supplies. A couple weeks ago when Trump said “Anyone who wants a test can get it” we all knew it wasn’t true. What I’ve seen here in Indianapolis proves that. Of course public officials such as Trump and his cohorts have all been tested for the virus even though they are completely asymptomatic. Whose life could’ve been saved by that test they did on the tigers in the zoo?
So the bottom-line is… The only thing you can do if you are asymptomatic and have been clearly exposed to someone like I was, is to completely self isolate. That means if you’re one of the people who is lucky enough to still have a job you have to quit. God knows what kind of process you would have to go through to keep from getting fired for not going in. And then you would have to prove that your unemployment was COVID-19 related. What would a single parent without a support network of family or friends do under such circumstances? Abandon her children to CPS? What if you are responsible for caring for an elderly family member? Does that make you a “healthcare professional”? If not, your choice would be to put your elderly relative into a nursing facility which would probably be more risky than you taking care of them yourself. Of course when they catch the virus from you, you get to blame yourself rather than blaming the nursing facility. None of these options are fun.
Under the current circumstances, testing supplies are in such short supply that they have to be rationed and prioritized in this particular way. I don’t deny that. The people who are getting priority for testing deserve the priority. And it was only a difference of a day and a degree of fever that I sort of stretched the system to get my test.
We are told that in order to safely open up our economy we need MASSIVE amount of testing and contact tracing. The truth is my home care agency and I have done our own contact tracing. If I come back positive, I will be the one contacting everyone I’ve been in touch with over the past few weeks to let them know of my status. None of the people that I will tell about my positive test will qualify to be tested until they become symptomatic. At which point God knows how many other people they have infected. Are they supposed to self isolate on the off chance I might have passed it to them? Are they going to shut down what is left of their life for 2 weeks just because they can’t get peace of mind that they are negative?
I don’t know how it is around the country, but Indianapolis was mentioned by the US Surgeon General a few weeks ago as an emerging hotspot. With the limited capacity we have for testing right now, we are NOWHERE NEAR READY TO REOPEN.
I witnessed an amazingly efficient and well-run testing program. And it is totally inadequate to meet our needs.
We are screwed.
In December 2016 I spent a month in the hospital with respiratory problems and getting a trach. The first half of the story was chronicled in a series titled “Pray That They Listen to the Man with No Voice” about my time in St. Vincent ICU. The second part title “Holiday Hospital” is about the rest of December including Christmas in St. Vincent Seton Specialty Hospital. I recently was going to share the story with a friend and realized that I had not yet completed the Holiday Hospital series. It’s been over three years since the events happened but I never did complete the story. So I will try once again to finish it up. This is part 10 in the “Holiday Hospital” series. Here is an index to all of the entries in this series.
In the previous installment of this story I told about the test that my dad had to pass by spending the night in the hospital with me and proving that he could handle my ventilator and trach issues. It had been a really rough night and neither of us had gotten much sleep but we had passed the test despite some minor mistakes. Theoretically all that had to happen was for the doctors or nurse practitioners to sign some forms and we would be on our way home. The respiratory therapist was planning on meeting us at my house to bring a bunch of supplies. We already had the new ventilator and will be taking it home with us.
Checking out of a hospital always takes longer than you think it should. You are anxious to get home and bureaucracy always moves at a snail’s pace. Over the years I’ve learned you just have to be patient and let the system go on its own pace. Here is a Facebook post I made at 6:50 a.m. Just as a reminder anytime you see this little Facebook icon is a link to a Facebook post related to when I’m talking about. [12/28/2016 6:50 AM]
Dad got me up and dressed and we began packing up a bunch of my stuff and hauling it out to the van. Unfortunately we hit a major snag. In theory my trach should be replaced once a month. For the first replacement it should be done by a doctor who would train my dad how to do subsequent replacements. We are describing events of December 28 and I had had the trach since December 7 so the soonest I would’ve really needed a replacement would’ve been January 7. But for some reason the powers that be decided they would not let me out of the hospital until I had a definitive appointment to change the trach.
I tried to convince them that it was not an immediate need. If they were so concerned about getting the trach changed why didn’t they just go ahead and change it right now if that was a prerequisite for me getting out. They didn’t really have anyone who was willing to do that. As I mentioned in previous installments there was really only one doctor covering the entire facility. Everything else was run by nurse practitioners and therapists and the doctor wasn’t available at the time.
They were trying to get in touch with my regular ENT doctor but he was on vacation over the holidays. The receptionist who booked his appointments didn’t know if he would even do that kind of thing in the office. Here is a Facebook video that I shot at 11:43 AM that shows me up and dressed and ready to go and basically telling the same story I just told in the past couple of paragraphs. In the video I said that I had had the trach installed on December 9 but it was actually December 7.
I impatiently roamed the halls almost all afternoon occasionally arguing with the case manager Michelle trying to get her to sign off on releasing me without getting the trach change nailed down. I even bribed her with a little 3D printed Christmas tree ornament which she really liked but it didn’t move things along any faster. [12/28/2016 2:02 PM]
While I was killing time waiting on my release from prison I managed to strike up conversations with some of the other staff. There were respiratory therapists and nurses just standing around the hallway in between doing whatever needed to be done. So I had some nice conversations with them. One of the people who I had seen every day was a woman who would sweep the rooms and emptied the wastebaskets. She was obviously a Muslim because she always wore a hijab headdress. I often wondered what it was like for her to work in a place where there were perhaps no other Muslims and everyone was going around wishing one another Merry Christmas. On several occasions, especially this one, I thought about saying to her “as-salamu alaykum” which is a tradition Islamic greeting that translates to “peace be upon you”. But I really didn’t know how it would be received and I don’t know any other Arabic phrases or words and I didn’t want to have her think I could actually speak Arabic.
A few months later I would have a respite nurse named Mohammed Tahir who became a good friend. We frequently had long discussions about religion. He was very curious about other faiths and had studied them on his own. I would answer his questions about Catholic Christianity and he would answer my questions about Islam. If I had had my experience with him I would’ve been much more open to reaching this woman with the Arabic greeting.
It Fell off a Truck
Among the things that they do for you as you are leaving the hospital is make sure that you have all of your necessary prescriptions. Just about everything that I was taking except for the new prostate medicine was stuff that I was already taking before going into the hospital. And if I missed a day or two of the prostate drug it wasn’t going to be any big deal. The one thing I was worried about was albuterol. It is a liquid that you put into your nebulizer to help clear your lungs. It comes a little plastic ampoules where you twist off the top and pour it into the nebulizer. I was concerned that I might need a breathing treatment before dad could get to the pharmacy and get that prescription filled. So we talked to one of the respiratory therapists and she was able to slip us a couple of ampoules of the medicine to take home with us. We said to her “I wonder where this came from? We just found it lying here.” She said “Maybe it fell off a truck and you found it.” We had a big laugh. Little did we know that filling that prescription was going to be more difficult than we anticipated so it was a good thing she got us a few free samples.
Free at Last
I don’t know what time we finally got out of the hospital but my notes say that we didn’t get home until 5 PM. We still had to meet the respiratory therapist at my house so that he could deliver the supplies. They arranged to get me a tentative appointment with my ENT doctor sometime in early January to change the trach. Unfortunately it was something like 8 AM which there was no way I was going to be there that early. A few days later I called to reschedule it at a more convenient time and we didn’t actually change it until January 12. And guess what… the world did not come to an end and I did not die because my trach was changed a few days later than scheduled. But I had wasted the entire day until they made arrangements for no good reason whatsoever.
As we were going out the door escorted by the case manager Michelle, she acted as though she had achieved some sort of victory. She had told us that it would take 2 weeks to get the ventilator arranged and I was being released from the hospital almost exactly 2 weeks after I entered. I explained to her that first of all there was no reason on earth the process should’ve taken that long. Also we had been trying to arrange the ventilator for five or six days back when I was still at St. Vincent before ever got to her facility. And that time had been completely wasted. Essentially we had to start from scratch when we moved to the new hospital. Furthermore there was absolutely no medical reason why I had to be in the hospital that long except for the bureaucracy of obtaining the ventilator and there was no reason that she needed to keep me in the hospital all that afternoon. So I didn’t acknowledge anything she did as a victory and I told her so in as nice yet firm as I could muster under the circumstances.
A Mountain of Supplies
As mentioned above, we got home about 5 PM. We had called the respiratory therapist Josh to meet us there and he arrived shortly after we did. He brought in boxes upon boxes upon boxes of supplies most of which we didn’t know how to use or even if we would ever need them. By the time he left they were piled high on our dining room table and all over the family room floor. We had no idea where we were going to store the stuff. He came back again the next day with even more supplies and eventually brought the high flow air compressor that I was going to use to humidify my trach when I wasn’t on the ventilator. As I previously reported in the end we never used that compressor very much and ended up getting rid of it after having to fight hard to get it in the first place.
Dad still had to unload my ventilator and all of my clothes, laptop computer etc. out of the van. I did a G-tube feeding and went to bed. We were both incredibly exhausted but especially dad because he had not slept well in the hospital with me the night before on that horrible Guantánamo Bay worthy cot.
The First Day Home
The first night at home was uneventful. Dad and I both got caught up on our sleep. The only problem we have was when we got me off of the ventilator the next morning we did not fully deflate the cuff in my trach and so I had a bit of difficulty breathing when he put in the talking valve. We eventually figured it out and I was able to breathe much easier. We had yet another visit from the respiratory therapist who brought even more supplies. We also had a visit from 2 nurses from St. Vincent were going to come for a half-hour a day a couple times a week to check up on me. I’m not really sure why we had them but in one incident they turned out to be useful.
I was able to get shaved again which felt good. We were not able to get all my prescriptions and as it turned out the nebulizer prescription for albuterol was going to be difficult to fill. Apparently you need some sort of special authorization for Medicare/Medicaid to pay for it. Of course the prescription was signed by either a doctor or nurse practitioner from Seton Hospital. I had no idea who they were. I didn’t recognize the name. We tried to get in touch with them through the case manager Michelle but we could not contact her over the weekend. Finally one of my St. Vincent nurses proved her worth that Saturday by getting on the phone with the pharmacist and reading him the riot act. She gave a real tearjerker scary argument saying that she didn’t want to be responsible if I went into respiratory arrest because I didn’t have my nebulizer medication. He finally relented and filled the prescription. As it turned out I did need a few treatments over the next several days but in the long term I rarely needed nebulizer treatments. I think that initial batch of albuterol lasted me over a year and I think we eventually threw some of it out because it expired and we got another prescription for my regular doctor. [12/29/2016 2:05 PM]
I continued to take notes about my day today progress from the time I got home through January and parts of early February. The story isn’t really interesting in retrospect so I’m not going through all of the detail that I did about the hospital stays. In summary here are some highlights of things I went through.
Typically if I needed to call dad while I was in bed and he was in the living room watching TV or asleep in the recliner, I would just yell really loud. When he was in the bedroom I had a buzzer that I can push and it would ring the alarm in the bedroom. But when I was on the ventilator, I couldn’t call at all by voice. So I had to modify a wireless remote that I had built for the living room to include a buzzer like the one we had in the bedroom.
After spending the entire month in the hospital using a spit cup with a lid and a straw in it, we decided using a regular glass tumbler with no lid and a straw was a bad idea. Dad got some plastic cups that he found in our cabinets that had been left over from some event my mom had hosted years ago. We couldn’t find lids that would fit so I made them out of ninja flex plastic on my 3D printer. I still use plastic cups with 3D printed lids to this day.
I had a follow-up doctor appointment with my family doctor, my pulmonary doctor, and my ENT who trained us how to change the trach. He changed it with my dad watching and then asked dad to remove it and put it back in again while the doctor watched. It all went very smoothly. However a month later when dad tried to change it on its own, we had great difficulty getting the old one out and the new one back in. We got it eventually but it was very difficult and clear the lots of blood. This continued for several months so I made another appointment hoping that he could show us what we were doing wrong.
The doctor sort of looked at us funny and you could tell he was thinking “Didn’t we are ready show you how to do this?” When he went to take out the old trach, he had the same difficulty getting the old one out that we did. When he tried to put in the new one, he could not get it in at all! I was so happy that he was having the same difficulty we did. He finally started probing around my opening using the Yankaur and discovered that my opening was not straight in. It actually slopes downward slightly. So then he tried putting in the trach again but this time angling it downward. It popped right in with little difficulty. Dad and I continued use this method. Since dad passed away in February, my sister Carol has been changing the trach on a monthly basis and it works okay using this downward angle method. I’ve had some trach failures at inappropriate times. The balloon that blows up the internal cuff got damaged and would not inflate. The worst time once the night before my dad’s funeral. I could not put on the ventilator and had to try to sleep without it. I got about three hours sleep and then had to go deliver the eulogy for my dad which you can find here. Other than that we’ve had few problems with the trach these past 3 years.
For the first several weeks I had lots of problems with my back brace not fitting very well. I also had problems with my hips. I just wasn’t used to sitting up in my wheelchair all day every day. Over the course of the next months things began to slowly get back to normal. However some days I had to go back to bed early. While it is possible to do a G-tube feeding in bed, in theory you need to be propped up at an angle for at least 30 minutes after a feeding. Otherwise you risk reflux and aspiration. So we made the decision after all these many years to finally get a hospital bed. That way if I needed to go to bed early, I can still do my late G-tube feeding and prop myself up. It took about five tries to get the equipment provider to get the proper paperwork to my doctor and back again. When we finally got the bed it was not fully automatic as we had requested. It did have a motor to raise and lower the head and feet but it did not have a motor to raise the entire height of the bed. We could have paid the difference in price out of pocket because Medicare/Medicaid would not pay for the fully automatic version but we didn’t discover that until the guy actually delivered the bed. We just decided to live with it as it was. You could manually crank it up or down so we just adjusted it to the height of my old bed and left it there.
As I had speculated, my home health aide Riah had moved on to different clients so we had to train some new people. But they didn’t last very long and eventually we got Riah back again. She continued to work here for nearly 3 years but had to quit a few months ago because of back problems. She hopes to return to work someday and we will welcome her back. We really became very good friends over the past several years and I miss her a lot.
I could fill up a dozen more blog posts about the process of recovery after this incident. It took a long time for me to get back to something similar to my previous normal. Among the things that concerned me was my ability to go out with friends like Rich and Kathy were have friends like the Byram’s or the Brake’s stay with me while dad went to the doctor or did other things. Eventually I got over my concerns and trained them all how to suction my trach and how to do G-tube feedings. I got to the point where I was pretty much back to normal. I thought perhaps my days of going to evening events were going to come to an end but I did eventually attend 2 great concerts at the Deer Creek Music Center with my sister Carol. We also continued to go to hockey games at the Fairgrounds Coliseum but normally try to do afternoon games so it’s easier on me. I continue to go to the movies regularly with my friends Rich and Kathy and we recently saw the final Star Wars film completing a tradition that had lasted 42 years. We have seen every Star Wars movie together (sometimes multiple times) except Rogue One which was playing while I was in the hospital.
The story of my dad’s failing health in 2018 and his death in February 2019 could fill many many more blogs. I’m not sure if I’m up to reliving all of those events. In May 2019 my friend Barbara Alkema and her son Josh moved in with me. That kept me out of a nursing home. My health has deteriorated in the past few months and that has been a big adjustment.
So life continues to send big challenges my way and I do my best to deal with them as they come. I did seriously dedicate myself to documenting the assistive technology such as my iOS switch control and ultimate remote that were so valuable to me in the hospital. I have a new appreciation for what it means to not be able to speak.
Overall the decision to have the trach has kept me alive much longer than I could have without it. It was a good decision to get the trach. It’s allowed me an excellent quality of life and I’m grateful that things like the Passy-Muir speaking valve were invented so that I can continue to be a person with a very strong voice.