As the Amyotrophic Lateral Sclerosis (ALS) Association’s Ice Bucket Challenge winds down, I can’t help but regret that my friend Arthur (Artie) Kraemer (February 12, 1960 – June 12, 2012), who succumbed to ALS, didn’t live to see the outpouring of support for the disease (a progressive, incurable neurodegenerative disorder) that claimed his life.
Artie was totally disabled from ALS, also known as Lou Gehrig’s Disease, and was, after Stephen Hawking, the longest-lived person with ALS in the world. He wrote and spoke (via voice synthesizer) with the assistance of a specially-designed computer system that he controlled by twitching his right cheek.
He always found it interesting that I worked with people who were blind or had low vision. As he put it, “You work with people who are visually impaired, but have mostly working body parts. I’m the exact opposite: I can see, but I’m pretty much everything-else-impaired. Go figure.”
Artie wrote the following story in response to a blog essay in which I roundly chastised a National Public Radio interview with Robert Mazzoli, a retired Colonel and former consultant in ophthalmology to the Army’s Surgeon General. Colonel Mazzoli perpetuated (unwittingly, I hope) the harmful notion that “There’s nothing more that can be done“ as he discussed the vision rehabilitation options available to blind and visually impaired veterans.
Artie’s story, about his own experience with a medical system that tried to tell him that “nothing more could be done,” is, I believe, a universally applicable one. I hope you agree.
Artie’s Story: The Diagnosis
I was diagnosed with ALS at age 21 after displaying the initial symptoms for about a year. I was a happy, healthy soldier serving in Korea and enjoying life. At a unit softball practice in 1980, I hurt my left thumb the same way twice, which was, unbeknownst to me then, the beginning of my ALS misadventure.
I went to the base hospital with a constantly twitching left thumb. Since it was a very small hospital (actually little more than a clinic), the staff there had no clue what was wrong with me, and gave me a cream to rub on my thumb. I returned to the States in February of the following year and was stationed at Fort Campbell in Kentucky.
The hospital there admitted me, knowing that something was seriously wrong with my body. They couldn’t pin it down, so they sent me to Walter Reed Army Hospital in Washington, D.C. After a couple months and every neurological test known to mankind, they determined what it was by ruling out everything else.
My doctor was very young, and I definitely felt he didn’t want to tell me I was going to die. I practically had to drag it out of him that ALS usually kills within 3-5 years. I have to tell you I never believed that, and never felt like my death was imminent.
How could I live my life thinking any moment could be my last? I couldn’t. So I made a conscious decision to more or less ignore it. I’ve treated ALS as an inconvenience and lived my life around it.
If you do the math, you know I’m now fifty years old and have had this disease for thirty years. I’ve loved my life and still do, even though I’m pretty messed up: I can’t move, can’t talk, can’t eat, and can’t breathe, even. I’m upbeat and happy in spite of all that.
Trying to Breathe
Speaking of breathing, let me tell you why I decided to write this. A doctor gave me the serious “There’s nothing more that can be done” speech earlier this year – when I spent nearly three months in the hospital with three separate cases of pneumonia; more likely, it was one case, but the bug simply wasn’t killed completely.
The second hospitalization was when “the speech” happened. I was about to be released and the doctor wanted to wean me from the hospital ventilator back to my home ventilator. The process started at 6:00 AM on a Thursday morning. My ventilator had been brought from home so that I could begin to acclimate myself to it.
Under normal procedure, it usually goes easily. This time I felt something was wrong immediately. It felt like I had five claws digging into my chest, plus it was difficult to breathe. I told the therapist what I was feeling, and his response was, “You’re fine, all your numbers are within limits, there’s nothing to worry about.”
After two hours, I finally convinced my nurse to take it off because of the discomfort I was feeling, even though I was trying hard to cooperate because I knew I had to go home with the thing. The next morning they did the same thing again – with the same result. This time I made it for six long hours.
I told the doctor, my home respiratory therapist, and the nurse how I was suffering with this machine, but they left the room. My aide ran after them, telling the doctor to take me off that ventilator right now because I was in agony. They took me off it immediately, but the nurse said that even though I had a break for now, we’d go at it again first thing tomorrow.
Oh, great (not).
Getting “the Speech”
That day, I decided I was never going through that again, even if it took death to accomplish it. This was on Friday afternoon. I told my aide to put the offending ventilator in his truck and take it back home so I couldn’t be forced to try it again. The ventilator should have worked, but it just didn’t. It was like my body simply rejected it.
So now Saturday morning rolled around. The nurse came into my room, looking for the offending ventilator, expecting to torture me further (and it was torture). She looked around with a puzzled expression, then walked back out without saying a word.
The doctor came in shortly after that. I wasn’t hooked up to my computer yet, so my aide told the doctor he would hook me up if he wanted to discuss anything with me. The doctor had a fit! He slammed his clipboard down, ripped off his hospital gown and threw it away, and stormed out. I was so proud!!
Fifteen minutes later, he came back and this is how our conversation went:
Doctor: Why did you take the ventilator away?
Me: So you can’t force me to use it again. I’m tired of fighting so hard for everything. There has to be an easier way.
Doctor: Are you ready to die, Arthur?
Me: Is that possible?
Me: How exactly is that done?
Doctor: We would overdose you with morphine and you’d die within fifteen minutes. You know, it might not be a bad time if you are considering this, because of the problems we’re having accessing your venous blood supply. Also, your system is very slow when digesting your food.
Me: (becoming frightened) No, I just want to talk to talk to my Veterans’ Administration (VA) case worker on Monday.
Moving to the Veterans’ Administration Hospital: Success!
I wrote to my caseworker that day and explained what had happened. She sent an ambulance to take me to the VA hospital, and it arrived at 3:00 PM. My brother-in-law Ken began checking online and actually located a catalog that carried the same ventilator the hospitals use. He found the “baby brother” of the hospital ventilator I had been using, and the VA hospital began searching for it. There was never any death-speak at the new hospital, only how-can-we-make-your-life-better-speak.
They finally located it in Boston and it took about a week for the VA to acquire it. Someone who had a new ventilator was willing to let me borrow their spare for a trial run. You see, when someone uses a “baby brother” mini-ventilator at home, they’re given two, a main and a spare, because if the main ventilator fails, you just plug in the spare, which saves your life.
Anyway, the ventilator arrived on Wednesday of the second week. Everyone was nervous, because what if this one didn’t work, what if nothing worked? It would be a nursing home for me. Ughh.
So they set it all up, and it took a while, because it was a brand-new machine and no one was familiar with it. The entire setup took about an hour, while my stomach was in knots.
Then they put me on it, and … instant relief! It felt the same as its big brother! I could tell immediately that this was the “bad boy” I needed. When I gave the thumbs up, the ten or so people who had gathered to witness the trial all clapped and cheered. Don’t you know that felt wonderful? And after living with it for a couple months I like it even more, because it’s so gentle, almost like breathing on my own.
The Moral of the Story: Never Accept that “Nothing More Can be Done”
The moral? Get more opinions and research, research, research on your own. Nobody cares as much about your vision or your life as much as you do, so definitely be your own best advocate, and don’t ever worry about hurting anyone’s feelings when it comes to your health.
Rest in peace, Artie – and thank you for never, ever accepting that “There’s nothing more that can be done.”
- Self-Advocacy: How Aggressive and Assertive Behaviors Differ
- There’s Nothing More that Can be Done, You Say? Not True, We Say!
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- Meet the Authors of Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight