When I woke the next morning I was still intubated of course and on a ventilator. My initial reaction when waking up and finding myself in such condition is I often feel like the ventilator is breathing a little bit shallower than I would like. However this time it wasn’t as bad as my previous experiences and I was more ready for it. The first time I woke on a ventilator several years ago I felt like the settings were way too low and I had that “I can’t breathe” situation where that one respiratory therapist was the only one who understood my problem.

St. Vincent nursing staff does 12 hour shifts with a shift change at 7 AM and 7 PM. There was a new nurse in the room so it had to be after the 7 AM change. Also in the room was a young resident named Dr. Heaven although she pronounces it Haven. She’s kind of petite with her hair pulled back in a ponytail and kind of nerdy glasses. She somewhat resembled my maker friend Limor “LadyAda” Fried except the doctor didn’t have pink hair like LadyAda.

Before I had gone on the vent I had asked if they had some sort of message board that I could point to to communicate while on the ventilator. The new nurse had a piece of paper with the alphabet displayed in rows and columns and some other symbols and icons around the edge like daytime, nighttime, pain I forget what else. I had told the previous nurse that I would try to point to the message board with a straw in my mouth. So we attempted to do that.

Note: after I posted this blog earlier today I went through some old paperwork that I brought back with me from the hospital and found this original message board. There are penciled in sections that we added several days later so for purposes of this blog entry assume that the pencil writing wasn’t there. You can click on the image for a larger version.

Dr. Heaven held the paper up in front of my face and I tried to type out some messages. The first thing that I noticed was that it was difficult for me to point accurately because she was holding the paper too far away. I couldn’t get the far end of the straw to actually touch the page so it was really difficult to tell where I was pointing. The whole thing was just a regular 8.5″ x 11″ piece of paper held up landscape orientation. Each square containing a letter was probably at most a square 1 inch. Try pointing at that with a stick at a distance of even two or 3 inches and it’s difficult to precisely tell which letter you are pointing at.

One of the problems with even an accurate way of spelling out messages is that it’s hard for the recipient of the message to connect the letters into words. For example my Uncle Keith is severely hearing impaired and my Aunt Barbara is totally deaf. I learned the finger spelling alphabet at an early age and when I have a little more dexterity with my fingers I could spell words using finger spelling sign language. But I never could read sign language. Even if they spell a word slowly I could recognize each letter but somehow I always perceived it as individual letters in my brain. I couldn’t ever learn to form words. I always thought it gave me a little insight into what might be like to have dyslexia or some other learning disability.

When mom had been in intensive care for 19 days with her pancreas problems and finally was in the St. Elizabeth Seton specialty wing rehabilitating, she would try to use finger spell sign language to talk to me or dad. The only way we could do it is if I would read the letters out loud as she was spelling things and dad would write it down and then we would try to read it back by inserting spaces where we thought they might go.

People were having the same problem understanding me. By the time I pointed to one letter or another they had forgotten what I had already pointed to. They had to write it down as I typed it. I don’t really recall what I tried to type initially. But I was far enough into the process and realizing that I needed the paper to be held closer to me that I decided to forget about whatever else it was I wanted to say and to try to tell them to hold the paper closer.

The very first message that I successfully communicated to Dr. Heaven was “paper closer”. I don’t recall if she wrote it down or the nurse wrote it down or how they managed to get my sequence of letters to reveal those two words but I did successfully communicate those two words. Unfortunately the young resident was clueless as to what I was trying to communicate with those two words. She didn’t understand that I wanted her to hold the paper closer to me so that I could more accurately communicate. As I tried to type out another message… I don’t recall what it was I was trying to say… The way she was holding the paper was slowly drifting further away and making accurate typing even more difficult. If she had understood what I meant by “paper closer” the system might have worked.

At some point after Dr. Heaven left, I tried communicating with one of the nurses with her just pointing at the letters. I had already established with them that wiggling my eyebrows up and down was yes and twitching my mouth left and right was no. Somewhere along the way I also established that making a clicking sound with my tongue who get their attention. And I could use the clicking sound when they pointed to letters on the message board as if I was clicking on it with the mouse. Of course the tongue clicking originated with my late friend Christopher Lee who could not talk because of his severe cerebral palsy. I built the computer for him where he could click into a microphone and use it as a single switch scanning communication system. More on that later.

A Refusal to Communicate

While I could laugh in frustration at my inability to get the resident to understand what “paper closer” meant, there was another communication problem that was not the tiniest bit funny. The new nurse for this first dayshift was extremely impatient with the slowness of my communication.

She was also extremely insistent that she repositioned me as is their usual protocol. I fully understand why they have rules that you should turn the patient every few hours. For the most part it is to protect your skin from bedsores. On the other hand I know my body better than anyone else. Unlike many “quadriplegic” patients, my inability to move does not preclude me from feeling everything. My motor neurons are shot but my sensory nerves are completely intact. I know when I’m feeling pressure and what to do about it. For me if I lie flat on my back without my head elevated even the tiniest bit, all of the pressure equalizes over the widest area of my body arms and legs. If you try to jam a pillow under one side or the other, everything gets imbalanced and it actually creates pressure points. Of course it’s difficult to communicate that using slow typing message board and an inpatient nurse. The best I could do was when they would try to starts a pillow under me I would give them an emphatic “NO” signal.

Her only explanation in refusing to follow my “no” was to say “we have to”.

REALLY?

Timeout for a minute. When I type the word “REALLY?” like that, you need to read it in the same tone of voice used by Seth Meyers and Amy Poehler in their famous SNL sketch titled “Really?” If you’re not familiar with that sketch, stop reading right now and check out this YouTube video for an example. You really need to see this sketch if you’re going to appreciate the rest of this blog.

REALLY?

Do you think you could be more condescending? I recall numerous arguments between my mother and my sisters when they were little kids and they would give mom a very defiant “why?” whenever mom would insist upon something they didn’t want to do. Mom would reply to them “Because I’m the mom and what I say goes”. When this nurse said to me simply “We have to” all I could hear was my mother saying “Because I’m the mom”. Another resident or nurse I’m not sure which also gave me a similar condescending explanation. I only saw this other woman this one time but her explanation of why they had to stuff pillows under me was “We just have to. We wouldn’t be taking good care of you if we didn’t”. Did these people really think I had been in a wheelchair my entire life and didn’t understand skincare issues? I’ve been wrestling with this longer than they’ve been alive.

While I was 99.999% sure that this was totally motivated by my skincare concerns, there was a possibility that they were concerned about my lungs. If that was the case then I would put up with it. I would suffer discomfort and risk pressure points on my skin in order to help my lungs. On the other hand I had been in the ICU less than 24 hours and there was no way my skin was going to start breaking down that quickly. I wanted to stay comfortably flat without being twisted and propped into awkward positions for my own good.

I wanted to ask the nurse if her insistence on repositioning me was based on my skincare or my lungs. I tried to get her to hold up the communication board and she refused! What had been a frustrating situation about my comfort at suddenly turned into a battle of wills in which she could not only enforce her will upon me as if I were a little child, she now had a means to basically enforce a gag order on me by not allowing me to use the only method of communication available to me.

Next this inpatient nurse with whom I’ve been having a battle of wits noticed my special called button in my right hand. She picked it up, stared at it in amazement, and said “WHAT is this?” It is a rather bizarre looking thing. She commented that it had these strange metal prongs sticking out of it that look like they should be plugged into something. She basically ripped it out of my hand and laid aside and went about doing whatever she was doing.

Now not only was she refusing to communicate with me, she removed the only remaining method I had of communicating with anyone else which was to be able to press the call button. So for example if she left the room and I hit the button I might be able to get a more cooperative nurse to come. But now that option was unceremoniously deprived of me. Not to mention if there was something medically wrong with me and I actually needed a nurse I had no way to call.

What I thought was going to be “the last straw” was one final refusal of hers to communicate with me when she said “You need to stop trying to talk”.

REALLY?

There have been times when I tried to talk and I shouldn’t have. At 3 AM the previous night when they were trying to get the intubation tube up my nose and in my throat I was trying to ask what was going wrong and why was it taking so long. They told me don’t talk and that was a legitimate request. But this was in no way medically motivated. She sort of implied that I needed to calm down and shut up because trying to talk with getting me agitated. Talking wasn’t upsetting me… Her refusal to allow me to communicate was what was upsetting me. If she wanted me to calm down maybe she would treat me like an adult human being and listen to what the fuck I was trying to say to her.

I couldn’t do anything but just lay there and be pissed off. I kept thinking about how I’ve always been able to be such an active participant in my own health care. Dozens of nurses have praised me saying how much they enjoy having me for a patient because I can tell them exactly what I need. I can explain to them how to grab me, how to roll me, how to prop up a urinal between my legs so I can pee comfortably. By the way they all have great things to say about my skin. Even this horrible nurse who was so concerned about protecting me from bedsores at one point ended up saying what remarkable skin I have. When she told me what great skin I had I wanted to say to her “Then why the hell won’t you trust me to manage it?”

By the way I’m not in any way discounting the need to protect myself from bedsores. My mother had a really good friend who was a paraplegic that she worked with in various advocacy groups. He had pressure sores that went septic and it killed him and he was probably in his late 40s and otherwise medically stable besides his spinal cord injury. My cousin Nancy struggled with pressure sores on her feet that ended up with her needing amputation of one of her legs below the knee. So I take this stuff seriously. But I understand my own body. I’ve been living with this situation for 61+ years.

I’ve always been able to win these battles because I can communicate. I was laying there stewing over all of this and thinking things like “I’m not some Alzheimer’s or dementia patient or stroke victim who doesn’t know where they are or what they are doing. I’ve got an IQ well above 120 and only missed passing the Mensa exam by 2 percentage points. I know what the fuck I’m talking about. They just can’t talk down to me like this.”

So there I sat with nothing to do but think about “The Questionnaire” that I had been given less than 24 hours prior. It occurred to me that in the situation I was in now, I would actually answer some of those questions very differently.

I need to be 100% clear about what was really going on here. Not in this incident nor in another one I will describe later was I ever physically harmed. Although I was a bit emotionally shaken by the whole thing, I can’t really say that it rose to the level of verbal or emotional abuse. I suppose I would feel differently about it if I was in a permanent situation with a caregiver such as this and had to endure it every day. This was really a battle of wits. A kind of pissing contest in which I was getting both pissed off and pissed on. But there were serious principles at stake. I have the right to refuse any treatment whatsoever. There was no reason to shut off communication with me and in fact that cut off of communication put me at risk. It was clearly the first time in my life where I felt totally helpless and slightly endangered at the hands of a caregiver. It’s exactly the kind of thing the questionnaire was trying to uncover.

At some point they had let me know that they had called my dad that morning to let him know that I had been intubated. I doubt that it came to any surprise because I think we both anticipated it was going to happen. I was more surprised that they didn’t try to do it in the ER or shortly after I arrived in the ICU but as I explained this breathing difficulty would come and go in waves and every time he got bad it would clear up again. So in some respects dad wasn’t going to be surprised to see me on the vent because they had told him in advance.

When dad arrived he talked to this nasty nurse and she gave him a reasonable update about my condition. That I was doing okay on the vent. But at some point she says to him “He shouldn’t be talking right now.”

REALLY?… REALLY?… REAL fucking LY?…

 

 

<sigh>

 

 

R E A L L Y !!!????

My Father walks in the door having recently learned I was intubated. He really has no idea what my medical condition is or isn’t, even though you’ve told him I’m doing relatively well.

And then you tell him that I shouldn’t be talking!

REALLY?

What on God’s green earth would motivate you to say that to my Father? This was the absolute last straw! What the fuck is he supposed to think now? Not only does it conjure up all sorts of medical complications that are nonexistent and probably leave him with 100 questions about why I shouldn’t be talking. Now she’s trying to impede my communication with the only person in the universe who can help me in this particular situation. It’s bad enough that she doesn’t have the time or the patience or the concern to talk to me. Now she’s trying to limit my ability to communicate with a man who loves me most of the world. He is the most absolute patient human being ever created by God Almighty. And he has nothing to do except sit and try to communicate with me. And she’s telling him that I shouldn’t be talking.

REALLY?

Sweetheart you had better hope I die before I regain the ability to talk. Because when I can talk. I’m going to have a fucking encyclopedia worth of things to say about you.

By the way I later asked my dad what he thought when she said I should not be talking. It really was of no concern. It was like… Well he’s got a tube in his throat. He can’t talk. So what’s the big deal? He did not take it to mean there should be no attempt to communicate with me at all. He took it to be literally “talking” which of course I couldn’t do. So my concern that it unnecessarily worried him turned out not to be true. It still doesn’t excuse the situation.

I Get My Chance to Communicate After All

Normally as I write these blogs I try to do them chronologically and I leave cliffhangers for dramatic effect as in the foreshadowing of both “The First Incident” and the fact that there is at least one other. But I’m going to jump to the end of this particular story and tell you how it resolved 2 days later.

This was the morning of Sunday, December 4th but on Tuesday, December 6th I was doing well enough that they removed the intubation tube and I could talk normally. And it so happened that a nursing supervisor stopped by sometime during the day and asked me how things were going. I had a similar supervisor visit during my hospitalization back in May when I had the G-tube placed and I was fighting a UTI. I’m really not a complainer. I don’t get pissed if the nurse doesn’t come within 30 seconds of me pushing the call button. I don’t care if my bath comes late. I’m a very patient patient. But when the supervisor asked me back in May if there was anything wrong way decided to tell her about a problem with respiratory therapist. The RT didn’t want to hook up the humidifier to my CPAP machine. In the end it was a good thing I did complaint. The respiratory therapist was wrong. I should’ve complained to someone the first day. So having that incident under my belt made it very easy to jump right in and tell the supervisor what had happened with the nurse refusing to communicate in treating me in such a condescending way.

Not that I would’ve needed the experience back in May to voice my opinion this time around. I would tell it stranger on the street about this. It reminds me of the joke about the guy who goes in to confession and tells the priest about all of the women that he’s had sex with. The priest says to him “My son you don’t sound like you have any regrets. Why are you confessing?” The guy replies “I’m not Catholic. I’m not here to confess. I’m just telling everybody!” So it’s a little bit disingenuous of me to say that the experience back in May made it easier for me to complain this time around.

So I told the nurse supervisor the whole thing in approximately the same amount of detail that I’ve related here. I made it clear to the woman that I had not been physically nor emotionally harmed. But that I did feel violated. That I did feel disrespected. That I did feel that I had clearly tried to exercise my right to refuse “treatment” and that those wishes had not been met. I told her that I respected their protocols about skincare and could understand why they would be insistent upon them but that I felt I had a legitimate reason to refuse. I gave her the “I’m not an Alzheimer’s or dementia patient I’ve got an IQ of blah blah blah blah” speech.

And then I made it clear to her that while I could possibly get over that disappointment of losing this little battle of wits. That this whole deal “You shouldn’t be talking” was way, way, way out of bounds since there was no medical reason whatsoever for it. And that the worst most unforgivable aspect of the entire incident was to say that to my Father again for no medical reason and at a time within minutes of him walking in the door and not really understanding my condition. That wasn’t a battle of wits or an argument over skincare protocol. That was medical misinformation delivered to my family member who is my designated medical representative.

Because it was two days later a lot of the fury, anger, hatred had faded but the determination to correct the situation of course had not and to some extent still hasn’t. This issue is going to become a crusade for me. This blog isn’t just to exercise my writing muscles and to entertain friends and family. This is a big issue and is going to be one that I continue to pursue as an advocate.

I told the supervisor that things got better later in the day and I may have had her as my daytime nurse the second day without further incident, But because things had gone a little smoother, I told the supervisor that I really didn’t want anyone reprimand or fired or punished. But we certainly have one hell of a teachable moment.

I don’t recall the name of this nurse supervisor but she listened intently. Understood everything I was saying. Agreed with pretty much everything I said that this should not have happened. And she promised me that it would be addressed. I never saw that condescending nurse again.

As I said… I’m jumping ahead a couple of days from the 4th to the 6th. There was another I guess we will call it “non-incident” on the 5th that I discussed with the supervisor on the 6th. I will go back and tell those stories in context later.

Just to reassure readers… “The Second Incident” which occurred on Friday, December 9th and which we will tell you about later, was again more a battle of wits than any physical or emotional abuse. It had some unique elements we will discuss. But after all of the cliffhangers, I just want to let everyone know by except for the 2 incidents, I had magnificent care from everyone both at St. Vincent 86th Street and at St. Vincent Seton Specialty Hospital to which I was later transferred. And that in neither of these incidents was I in any way physically harmed. I was made physically uncomfortable and angered by lack of respect for my wishes and self determination. But I never was really in harms way. And I would tell you if I had been.

I was able to use the communication board to talk to my dad and to the nurses later in the day. I instructed dad to bring my iPhone when he came back the next day. So beginning on December 5th I was able to use my iPhone and my ultimate remote control gadget to type messages to family, nurses and doctors. More on that in the future installments.