Eleventh in a series. Click here for an index of all of the articles in this series.
A Long Story
This is going to be a very long blog entry about some moral support from a group of people that I hoped were concerned about me but I had no idea how deep their feelings for me went. It was a very pleasant surprise to get so much care and concern. Like many stories that I tell, this one requires a great deal of back story and context for you to really understand what happened the afternoon of December 9 when I emailed a friend and got an amazing response. So I apologize a bit for the length of this installment but I think you’ll find it interesting. To really appreciate what happened that afternoon and in the days that followed, you need to know this long story.
From time to time I’ve encountered a friend or relative who was perhaps 30-40 years old and was very upset because someone that they knew had passed away who was approximately the same age as them. In some ways it surprised me how hard it was for them. The death of any loved one, even someone in their 80s or 90s who has lived a full life, can be a difficult experience for us at any age. But usually by the time we are young adults we have lost a great grandparent, grandparent or great aunt or uncle and we come to terms with it. But it didn’t really occur to me how rare it was for people to have experienced the loss of a friend who was of a similar age. The reason it surprised me that people in their 30s or 40s would find it difficult to face the death of someone that age is because I have experienced the loss of peers at a much younger age.
As chronicled in my award-winning story “The Reunion“, I went to a special education school that was all handicapped kids from the time I was in kindergarten all the way through high school. In my teen years, I lost several friends to the effects of their disabilities. Terry Johnson was two years older than me. He was a straight “A” student whom I taught to play chess and who was beating me within a month. Six months after graduating high school he caught pneumonia and died. He never went to college. Never had a job. Never did anything with the great intellect that he had.
Dan Moran was an acquaintance from high school. We got in a nasty argument one day over something trivial. I planned on apologizing the next day but he got sick and never returned. Several weeks later we were told he had passed away.
Heidi Wolfe transferred into the handicapped school in junior high. I played chess with her as well but would regularly beat her. One of the teachers asked me to let her win a game. I protested vehemently that he didn’t know what he was asking me to do. Did he really expect me to take a dive and let a girl beat me? He said it would be a personal favor to him. I told him I would think about it. Heidi never returned for me to take that dive. I later learned she had had terminal cancer the entire time. These are just three of the most dramatic stories of people that I’ve lost at an early age.
When I was very young, the doctors had no idea what kind of disability I had. They had warned my parents I probably would not live very long. I was even rushed through some of the Catholic sacraments at an early age because they didn’t think I would make it into my teen years for example to receive the Sacrament of Confirmation. In some ways I’ve lived my whole life thinking I didn’t have very long to live. That’s why when I turned 60 a year and a half ago I had my sister Carol throw me a big birthday party to celebrate how wrong everybody was about how long I had to live. Here’s a YouTube video of the speech I gave at that party that expresses those feelings.
All of the above has taught me not to take anything for granted. Even if you don’t have fragile health like I have, or some of my grade school and high school friends had, life is short and you never know how long you really have. We live in a dangerous world of guns, violence, cancer, incurable diseases, and just plain dumb accidents. The lessons I’ve learned from these experiences are that you don’t ever miss an opportunity to tell the people that you love how you feel for them. Although I’ve not admitted it publicly until now, the speech that I gave at my 60th birthday party is what I would have said had I been able to speak at my own funeral. While I hope and pray that I continue to have many more years ahead of me, that speech at the birthday party was my insurance that I didn’t leave anything unsaid to those that mean the most to me.
I’ve known for many years that the highest probability was that I would die of pneumonia in the St. Vincent ICU someday. While I’ve had some very serious illnesses to the past, this particular set of circumstances probably had me closer to death than I’ve ever been. You can live without food for weeks, without water for days, but when you can’t breathe you only have minutes to live. The respiratory distress I experienced the night I went to the ER and the other bouts of distress I had in the days that followed were very scary and dangerous experiences.
As I thought about these things lying in the St. Vincent ICU the past few days I knew that I had left nothing unsaid to most of the important people in my life. I knew that I had their love and prayer support for my recovery. They were being kept updated by Facebook and email about my ongoing condition. I had asked Carol to send emails to people like my friend Roy Buzdor who is not on Facebook.
However there was an entire community of people that I associate with who did not know about my illness. I also found myself wondering what would happen if I simply disappeared from this circle of acquaintances and friends. Would they miss me? Would they mourn my loss? Although I had great affection for them I wasn’t really sure how they felt about me. I begin to feel there were some things left unsaid and I needed to take this opportunity to say them even though at this point I really felt like I was past the critical stage.
The people and talking about are the maker community. Makers are a group of people who like to tinker with electronics, 3D printing, building things from scratch, and sharing them with one another mostly as open source software and hardware design. For a variety of reasons I communicate with them via the Google Plus social media network rather than via Facebook. I had not had an opportunity to post anything to Google Plus about my illness. The circle of people I associate with there is pretty small and while I have some affection for the group there are really only two people with whom I feel a special fondness. They are Limor Fried and her husband Phil Torrone. The story of how I met them, developed a relationship with them, and their response to learning of my illness is a long but fascinating story that we will now explore.
Electronics and Me
As I’m writing this blog, today is the 39th anniversary of the famous Midwest blizzard of 1978. At the time I was working a full-time job as a computer programmer for the Indiana University Department of Medical Genetics. The entire city was shut down for three days so I spent the days at home reading computer magazines such as Byte and Creative Computing. I couldn’t resist anymore and I vowed that once the city thawed out I was going to buy my first personal computer.
In those days a PC wasn’t an off-the-shelf item. I don’t believe RadioShack had released its first computer yet. You probably could buy an Apple computer but they were relatively new. Most personal computers were built from kits by hobbyists. You would buy a chassis and motherboard with power supply and then you would purchase various circuit boards separately. Although it was sometimes possible to purchase an assembled circuit board, most of them were sold in the form of kits that you had to assemble yourself. You would get a premade predrilled circuit board and a plastic bag full of parts that you had to solder together yourself.
The chassis on my first computer was called a Cromemco Z-2. The box was an aluminum crate about the size of a small microwave oven. The power supply was a giant transformer about 6x6x6 inches. It had capacitors that were the size of a frozen orange juice can. This computer used a somewhat standard architecture called the S-100 bus. It was a backplane with a couple of dozen large sockets into which you would plug the various circuit boards. It had 100 wires in the bus. There was a processor board that contained a Z-80 microprocessor and the associated chips necessary to make it work. There was an I/O board that had serial and parallel ports and included a cassette tape interface. Initially this computer did not even have a floppy disk drive and hard drives for personal computers had not yet been invented. There was a ROM memory board with a PROM burner. There was a memory mapped video board that displayed 64 x 16 characters of text on a 12 inch black and white standard TV. Each memory board held a whopping 16 K of RAM. Initially I only had one such memory board but later expanded to three boards giving me 48K. Later I did add another board that was a floppy disk controller. Keep in mind these are kilobytes we are talking about, not gigabytes nor even megabytes. These photos of my first computer or after I had purchased a better monitor and a couple of floppy disk drives but the basic computer was the same.
Not only did I have to build the computer from a kit and try to get different parts from different suppliers to work together, there were no standard cables. You had to wire all of your cables yourself. There were standards for serial ports and parallel ports but you couldn’t always just buy a cable for most circumstances. You had to build them yourself.
Dad and I enjoyed building the computer and tinkering with all the electronics necessary to make it work. Dad also began tinkering with electronic kits from a company called Heathkit. At one point he purchased an electronics tutorial package that was supposed to teach you basic electronics. We did lots of other tinkering with electronics using 7400 series TTL ICs. We built little digital counters and different kinds of blinking things using 555 timers and LEDs. It was a lot of fun.
Eventually off-the-shelf computers became available and all that we had to do was a little adaptation and customization so that I could operate them. Soon the days of electronic tinkering faded into a fond memory.
Sometime in 2012, I began to read articles about a little microprocessor board called Arduino. Hobbyists known as “makers” were building all sorts of gadgets with these little computers. The Arduino Uno was about the size of a deck of cards and contained a chip that ran at 16 MHz which was four times as fast as my old ancient first computer based on a Z-80. It had 32K of flash program memory, 2K of RAM memory and 1K of EEPROM memory. In many respects it was as powerful or more powerful as that first behemoth computer the size of a microwave oven.
This little board also had about 20 I/O pins that you could connect to various devices such as sensors, tiny LCD screens, LEDs, servos and other gadgets. In April 2012 I finally decided to purchase a starter kit and began experimenting with the Arduino platform. I had heard that you could use one to build a custom TV remote and I thought that would be an interesting project. A Google search for a supplier of Arduino led me to Adafruit.com which is the website for Adafruit Industries. This initial purchase on April 24, 2012 at 4:15 PM led me on an amazing journey into this world of makers. It rekindled my fascination with building electronic gadgets that I had had back in the early days when I built my first PC. Working with makers and tinkering with Arduino has the same sort of feel as those days in the late 70s and early 80s when personal computers were pretty much the exclusive domain of hobbyists. I don’t think the term “makers” had been coined yet but the atmosphere today is the same as it was back then.
The Adafruit Story
It was either great fortune or divine providence that led me to Adafruit.com to make that first purchase. They are an amazing company unlike anything else in the world inside or outside the maker community. I would not be surprised if 10 or 20 years from now, the Adafruit story became a movie similar to films like “The Imitation Game” or “Hidden Figures” which chronicle the stories of famous scientists and engineers of the recent past.
Limor Fried who goes by the nickname “Lady Ada” was an electrical engineering graduate student at MIT. As a hobby, she would design little electronic projects and post tutorials on how to build them on a personal blog that she maintained. People would write her asking her where to get the parts to build such projects and they suggested that she begin selling kits so that people could easily build her designs. At first she resisted but eventually gave in and began selling kits out of her dorm room at MIT. In 2005 she started Adafruit Industries and began selling kits out of her apartment with her husband Phil Torrone.
Phil has a long list of maker credentials as well having founded the website http://hackaday.com/ and later went on to work for Make Magazine. Now his full-time job is working at Adafruit in support of his wife’s work. She affectionately refers to him as Mr. Lady Ada but I’ve always thought he deserved a nickname of his own.
Initially everything was run out of their apartment in New York City under the watchful eye of their pet cat MOSFET. (MOSFET stands for metal oxide semiconductor field effect transistor. A type of power transistor used for controlling motors and other high current devices). She would design projects and purchase parts in bulk. They would assemble kits and put them in plastic bags and Phil would ship perhaps 10 or 12 orders per day. They also had a laser cutter that they would use to cut circuit boards and etch them. They also made money on the side by custom engraving people’s laptops using the laser cutter. Rather than using a sophisticated pick-and-place assembly line and a wave soldering machine, they would place parts by hand and solder them in a hacked, temperature controlled, toaster oven.
Without any outside funding or without ever going into debt, this small enterprise grew into a multimillion dollar company. Lady Ada was the first female engineer ever to be featured on the cover of Wired magazine. In 2012 just as I was making my first purchase from them, Entrepreneur Magazine awarded her “Entrepreneur of the Year”. In 2016 she was invited to the White House for a special conference where she was named one of several “Champions of Change” for her work in the maker community.
Adafruit now occupies 50,000+ square foot of factory warehouse space in the heart of New York City in the Soho area and employees over 100 people. The old toaster oven has been retired and now they have several state-of-the-art production lines for building their devices. They are the official manufacturer of the Arduino platform in the US and their online catalog lists well over 2000 products each of which has been designed by or personally approved by Lady Ada.
If you are expecting these young entrepreneurs to go around in business suits and look like sophisticated engineers you would be sorely mistaken. Lady Ada dyes her hair bright pink and has various piercings. Phil is very much a goth type with long hair, a beard, and always dresses in black.
As if they were not busy enough managing this multimillion dollar enterprise, each week they host an online video chat using Google plus hangouts. They call it their weekly Show-and-Tell. Ordinary people, like me, can join the program and show off their projects. It might be electronic gadgets, 3D printed objects, wearable electronics, cosplay props, a tour of a local maker space, or vintage electronics like old RadioShack and Heathkit gadgets. Whatever you want to show off that you’ve built you are welcome to join and share.
Whether the participant is a trained engineer who designs and builds sophisticated music synthesizers or it’s a 12-year-old kid who learned how to program NeoPixel LEDs to make some blinking gadgets, they treat all of the participants as honored guests and offer praise and feedback for their work. Anytime you participate you can email email@example.com and they will send you a free sticker saying “As seen on show-and-tell” to proudly display on your project. I’ve appeared on the Show-and-Tell program over 20 times since December 2012.
Lady Ada says that her real goal is to teach electronics to people of all ages and all levels of experience. They have a tutorial section called https://learn.adafruit.com with over 1000 tutorials. She says “We are not an electronics supplier. We are an educational service with a really big gift shop.” Everything that they design for sale is completely open source. That means that if you wanted to, you could download the schematics, board layouts, and software for everything that is their original products and build it yourself from scratch without purchasing it from them. You will see no “patent pending” or patent numbers on anything they design and sell.
I’ve written several tutorials for them to share some of the work I’ve done mostly in the area of infrared remote controls. I also designed a cell phone booster battery project with a 3D printed case that I call “Printy Boost“. It’s a bit of a pun based on an early Adafruit project that did the same thing but was stored in a Mentos mint gum package. It was called a “Minty Boost“.
Lady Ada and Phil also host a one hour show after that “Show and Tell” called “Ask an Engineer” in which they talk about new products, news from the maker industry, the latest tutorials they published, a history of science and maker issues, and it’s all wrapped up with a Q&A session where you can ask technical questions of the engineer Lady Ada. In addition to these programs she also hosts live streaming video called “From the desk of Lady Ada” in which you get to follow her thought processes as she designs and tests new products. That particular program is streamed live from their apartment in the evenings and weekends.
How they are able to do all of that and still manage a big company is a mystery to me. Oh I’m sure they have middle-management people and finance people etc. handling some of the day-to-day operation but for the most part they are both very hands-on in the running of the business while maintaining this very public and personal connection to their customers.
They are extremely socially conscious people who treat their employees like real partners. They pay them good wages with good benefits. They paid them throughout the time off they had to take when hurricane Sandy shut down the business for several days. Not only is Martin Luther King day a paid holiday and they are encouraged to make it a day of service, employees are given up to three days paid leave per year for them to do volunteer work with any certified 501.c.3 charity.
A few months ago I got inspired to write a parody of the opening number from the musical Hamilton but my version was about “Lady Ada Limor Fried”. Like Hamilton she is a tireless worker who is a self-starter who has done amazing things. You can read my parody here.
Here is a link to their “About Us” webpage from the company site. https://www.adafruit.com/about
Whenever I’ve appeared on the show and tell, they seemed especially fascinated with the idea that I am putting their products to use for really practical purposes. That something I always emphasize when I make a presentation. While the little toy trinkets and the blinking lights and the cosplay props are all fun and educational ways to spend one’s time, I always remind them that the gadgets that I build make my life better every day. The infrared remotes that I built give me access to every cable box, TV, DVR, VCR, and DVD player in my house. I would not be able to operate these devices without the gadgets I built from Adafruit parts.
I use my 3D printer not only to build silly little toy robots and action figures but I also used it to build the joystick mount that allows me to drive my new custom wheelchair. The fact that I’m using their products to solve real-world problems has not gone unnoticed. At the beginning of the Ask an Engineer program they always give a recap of the projects that were displayed on the previous Show-and-Tell earlier that evening. They’ve taken the time to make special note of some of my projects and praise them for the fact that they are very practical uses of the technology.
I’ve written a number of emails and spoken to them online to express my gratitude for all that they’ve done for the maker community in general and to me in particular. I remind them that the gadgets I built using their parts make my life better every day. But it occurred to me that this situation had been taken to a new level. My “Ultimate Remote” that I built from Adafruit parts that gives me access to my iPhone wasn’t just being used to post cute messages on Facebook or to crush candy or other trivial things. It was my major means of communication with doctors and nurses during what could have been critical medical times. This communication contributed to keeping me alive during a very serious illness.
I felt the need to thank them one last time. Even though I didn’t think at this point that I was dying, there was always the chance I could take a turn for the worst and I didn’t want to leave anything unsaid. Just a few days ago I thought I was on the mend and didn’t ask Fr. Paul to give me the sacrament of the sick. Two days later I was in surgery getting a tracheostomy. So even though I was doing much better, I knew that things could get worse again very quickly. So I dropped an email to Phil the afternoon of December 9 at 2:31 PM that read as follows…
To: Phil Torrone
Subject: I’m in the hospital
Hi Phil and Limor,
Chris Young here. I have pneumonia and I had to get a tracheotomy so for now I can’t talk. I am using this device built from Adfruit parts. http://tech.cyborg5.com/2016/01/20/the-ultimate-remote-control-and-why-i-built-it/ to type messages to doctors and nurses on my iPhone. I’ve told you before that Adafruit products make my life better every day but now they are helping to save my life. I’m hoping to recover but I’m in pretty bad shape. I want to tell you that you are both a great blessing to me. You have treated me like a friend and colleague rather than a customer. I will treasure this always. I’m not giving up because I still have projects to show and tutorials to write. While I had the chance, I just wanted to drop you a note to say thank you just in case I end up meeting my Maker 🙂
Again while I didn’t think I was at the moment on death’s door, I understood that there would still likely be ups and downs and there was always the possibility I could take a turn for the worst. Also I thought it was a really good pun when talking to people who were “makers” about meeting your maker.
Within 2 minutes I had a reply…
our thoughts and best wishes are with you, the world is a better place because of you and you’ve been so special to us.
which hospital are you at? is there anything we can send you or do?
thank you for being a bring light in our lives no matter what and where this life takes us.
pt and limor
I wrote back and said simply “Your good wishes are all I need.” It was great to hear from them and I had said what I needed to say. I thought that was the end of it. Maybe I would send them an update now and then and I would have stories to tell next time I came to the weekly show and tell. Actually a few days before I got sick I had planned to attend a show and tell to talk about some modifications I had made to my 3D printer. Unfortunately that night there was a problem with the Google hang out infrastructure and the program had to be canceled. So at least I needed to show off that 3D printer modification as soon as I got back home.
The Phone Call
December 9th was a Friday. My sister Carol came to visit around 5 PM and dad went home for the day. My friends Rich and Kathy Logan also dropped by to visit. I will tell more about their visit later. While we were all talking (rather they were talking I was trying to communicate by yes and no and an occasional message typed on the iPhone) one of the nurses came in and said “We’ve got a phone call from someone inquiring about Chris. Of course we aren’t allowed to release any medical information but I told him he could talk to a family member. His name is Phil.” Carol, not knowing who it was, agreed to talk to him anyway. She picked up the phone in my room.
I could not believe that somehow he had tracked me down, figured out what hospital I was in, and made a phone call to see how I was doing. Carol talked to him for several minutes and he gave her his private phone number and she gave him her phone number so they could keep in touch if something happened to me. He explained to her who he was and that he had gotten email from me about being in the hospital. He heaped all sorts of praise on me about how wonderful I was and how much they appreciated everything I had done for the maker community. He went on to say that if there was anything I needed that I should just ask. He said “nothing is too big or too small to ask”.
Rich suggested it was a great opportunity to hit them up for some expensive gear. Maybe I needed a better 3D printer or a CNC machine 🙂 When you have the owner of a multimillion dollar company telling you that you have a blank check, you’ve got to cash that sucker in. I’ve told the story to other people and they all agreed I should hit them up for something big while I had their sympathy and concern.
The truth was I already had way more from them than I ever expected. I felt guilty that I had laid there in bed and wondered if I would be missed or how much I might be missed if I never returned. I felt guilty for wondering if I had created any kind of legacy for myself in the maker community. I know that lots of people make use of my infrared software libraries that I publish. Several people have thanked me for designing the Printy Boost. I’ve got some positive feedback from my show and tell presentations. And I’ve always felt affection from Lady Ada and Mr. Lady Ada (as Phil is often called). But I had no idea the depth of that affection and appreciation that they and the entire community had for me. You can buy 3D printers. You can’t buy that kind of support.
I wrote him back saying I couldn’t believe he had tracked me down and called the hospital. I said “I can’t believe that you called yesterday! I’m so flattered. You have a multimillion dollar company to run and don’t need to be worried about me.” I went on to say he can keep in touch with my progress by following me on Facebook. All of my posts are public so you don’t need to be on my friends list to read them. You do not even need to be on Facebook yourself. He asked if it was okay to share my stories with the team at Adafruit. I said sure… Just like my projects I’m open source.
A few days later, I sent him an email telling him the good news that I had the talking valve on my trach and could finally speak again. I said that that means I would not have to resort to “Maker Charades” on future show and tell visits. “Maker charades” is what they call it when someone joins the show and tell but their microphone is not working. They just hold up their project and point and gesture to show it off. I was glad I would not have to resort to that but it was good to know they already had a way to let people participate who could not talk. I concluded that email with the phrase “Anyway thanks for your support. I believe in prayer, well wishes, good vibes and all forms of spiritual support.”
That last sentence seem to have a big impact on him. Although that email and the “meet your maker” line from earlier revealed me to be a person of faith, it showed that I respect and appreciate the support of people who are not necessarily religious. And in the long run I sensed that Phil perhaps realized that there’s nonreligious well wishes and good vibes had had a positive effect on my recovery.
To jump ahead in the story a little bit, a couple of weeks later on December 21 while still in the hospital, I joined the Wednesday night show and tell just to say thanks to everyone for all of their support. I used the WebCam on my laptop to login. Here is that video. My segment starts at about the four minute mark…
I mentioned that after the weekly show and tell, there is another program called Ask an Engineer and among the features of that program is a recap of what happened in the just concluded show and tell program. Although I did not watch the following Ask an Engineer live that night, I did go back a few days later to see what they had to say about my visit. During that segment there was a sentence from Phil that said something like “as we told you about last week…”. That was the first back I realized they had talked about me at the previous week’s Ask an Engineer. So here are some links to those videos. I’m still blown away by the support I got from them.
This is the Ask an Engineer from 12/14/2016 which was the first show after my email to Phil and his phone call to me. It is queued up to the 14:21 mark of the one hour program at the point where they start talking about me.
The segment is about two minutes long. At one point Lady Ada says “It’s never too late to tell the people you love how much you care about them.” And that was the entire point.
After I appeared on the show and tell from my hospital bed on 12/21/2016 this was what they had to say in the recap during the Ask an Engineer.
Phil mentioned that they sent me a get well video. It was a private video they took during one of their company meetings that they have each week. It was just a whole gang saying “Get Well Chris!” And lasted just eight seconds but it was wonderful that they took the time to record that for me.
Again to skip ahead in the story, the following Wednesday 12/28/2016 was the day that I got home from the hospital and did not have time to stop by show and tell. As it turned out they took the day off for the holidays and there was no show and tell that night. The following week on 1/4/2017 I appeared on the show and tell from home. I got to show off my 3D printer modifications that I had intended to show off right before I got sick. My segment starts at about 3:15 minutes in.
I’ve already started designing a new version of my ultimate remote that will make it even easier to communicate if I lose my voice again. I’m also working on a tutorial for the Adafruit Learning System that talks about how to control an iPhone or iPad device using switch control and Bluetooth devices made from Adafruit parts. That way anyone else who wants to build a device like mine will be able to do so with complete instructions, schematics, and source code all given away for free as open source.
At least three or four times during my hospital stay various doctors and nurses would marvel at my little technological gadgets. They would say something like “You ought to patent this and make a bunch of money off of it.” Then I tell them that I publish my designs open source so that anybody can re-create what I do for nothing but the cost of the raw materials. They are always a little bit embarrassed that their first reaction was a greedy “You should make money off of this” and my response is so much more altruistic. The embarrassment on their faces is priceless.
From a religious point of view… Prayer works. Also scripture says “Faithful friends are life-saving medicine;” Sirach 6:16
From a secular point of view… The support of a community of friends, the knowledge that you are appreciated, and the realization that you have a mission to complete to share your knowledge with the world and that it will be appreciated… That goes a long way to boost morale and give one a will to live.
As I told Phil “I believe in prayer, well wishes, good vibes and all forms of spiritual support.” This entire story explains why that belief is well-founded.
To be continued…
Follow-up: This paragraph was written about three years later in January 2020. I have gone on to do more work for Adafruit writing tutorials for them. The “Ultimate Remote” has gone through some major revisions and I wrote an extensive tutorial for the Adafruit Learning System on how people build their own ultimate remote which you can read here. Adafruit now pays me a stipend to write tutorials for them in addition to providing me with free parts to build the projects that I document. That tiny bit of extra income has been useful since my dad passed away in February 2019 and I’m now on my own living with a roommate who is my caregiver and friend.