ALS Dan Toch
Garmt was experiencing ALS – so you don’t have to!
Die Laughing
This post is not beautiful or nice. I started it to complain, and that is ugly.
I just got back from eight days in the hospital, to get nighttime breathing measured and assistive breathing configured. Let me start with miniblogs about why hospitals suck.
- It feels like something is pulling hard at the inside of my stomach, because that is exactly what is happening. It is not a pleasant sensation. At home, the tube sticking out of my belly is always taped to my chest, but here, it dangles all day, which means the dangling end gets caught during transfers. I try to explain this but give up after a few tries.
- Response time to the call button issometimes higher than my weakened sphincters can manage, so when the nurse finally arrives it is sometimes too late. She sees me and my wet lap and offers to put a towel over it. Answering no means she will leave. I need to literally spell out that I would rather not continue to soak in my own urine, and please could I have dry underpants?
- One of the toilet visions is so degrading, with pain at every move we make and a total absence of communication so nerve-rattlingly dehumanizing, that I ask my visiting friend to take over their work and put me to bed. I just don’t want them to touch me anymore. Please. I know you need to and I know you are a good person but I cannot take more today.
- I wake up, pain in my shoulder, I press the call button. The nurse asks how she can help me but answers herself: “Ah, you can’t say. Then, I don’t know.”. She walks away. I feel dread
- She comes back. She has not read the communication instructions that came with my file but she tries. After a lot of fumbling we work it out. This is a theme that returns so, so often this week. I do not have the energy to explain, and suffer as a result. They ask, “Are you not well?”, and after a week I have memorized which nurse needs a yes and which nurse needs a no in response to get any effect other than “Ok, then!” and leaving me. The instructions were so clear. RTFM, I scream in silence.
- The fourth time my leg slides out of bed, I trigger an alarm by wriggling the sensor off of my finger, as the call button is out of reach. For the next ten minutes, in an agonizing slow motion that pulls me apart bit by bit, I continue to slide out of bed, in a movement eerily resembling Mr. Bean, funny if it didn’t hurt so much. I look at the camera guarding me, but no one comes. I hear the alarm from my discarded sensor, but no one comes. Finally, with a loud thud, my upper body comes over the edge of the bed and my head hits the floor, ripping the hose from my breathing mask. Another alarm joins the cacophony, and I make the mistake of hoping that this alarm will be different, because it is not. After painful, desolate minutes during which I keep oddly calm, someone passing by in the hallway hears the noise and finds me.
- The fresh doctor that examines me after the fall does understand the concept of yes/no questions, and is also the first person in this week of fuckups that I hear an actual apology from. When I finally get in front of the computer, I give him the details of the fall, crushing untrue excuses along the way, asking answerless questions such as, why were the guardrails down, and why were they not put up the first three times my legs were heaved back in the bed? Along the way I ask why my drugs have not been administered correctly for one single day, why the pharmacy of this huge hospital is still fumbling to even get them to my room, or why I get breakfast at 3PM. Yes, indeed, grave mistakes. Let us take the ultimate measure, and file an Incident Report.
Attenuating circumstances aplenty as to the why behind all this: the staff is new in this hospital, I could have done a better job myself explaining how to at least communicate with me. The nurses are all upbeat, cheerful, joking, patient, which is not easy when you work in a department where only seriously ill people come. But still, this is how my experience went. And what scares me the most, in my continuing fear of the nursing home, is the following two bullet points:
- This was an academical hospital and everyone in my department must have treated loads of ALS patients before. This department had a ratio of one nurse per patient for sixteen hours per day and one nurse for two patients for the nighttime.
- A nursing home has one nurse for every ten to fifteen patients.
Anyway, enough ranting.
When I did get home, I felt worthless. Not in the sense of, say, hung over. I felt I was without worth. Without value. Guilty to exist. Guilty about everything I did wrong, totally insecure about everything. Guilty about existing. That sort of mindset can be dangerous, because you start to act desperate. So when I find out that my close circle of friends is having dinner without me, I make the wrong move. I feel shut out, jealous, hurt, and knowing that I have nothing to get mad about (was I really expecting an invitation for a meal in an appartment on the third floor of a liftless building?), I whine and bitch, then catch myself doing it and stop. Close call, I could have ruined something there. I think. I am better now, I can see how pain turns into anger and escapes my body through destructive action, but as I write this, some twisted part of me wakes up and still wants to shout at them that I hope they choke on their perfect steak and drown in their fucking champagne.
Oh, you motherfucker, I moan to the disease. He grins, enjoying himself, whispers, hey, it is your personality, I just tickle it.
He is right, the motherfucker.
We take Zoe to the playground, I feel so horribly useless, I know better than to cry and draw attention, so I hold the pain inside, where it numbs and festers (hey, I may be at a low point in life, but at least I get to write pseudo-death-metal lyrics: “the pain inside numbs and festers” (really??)). The road upwards begins when the mother of another ten-month old makes contact by pointing out the extreme coolness of my wheelchair to said ten-month old. That ten-month old meets our ten-month old and a small nuclear bomb of cuteness explodes as they explore each others face with tiny fingers. On our way home Zoe is fascinated by a neighborhood cat, and I wonder, how come she so clearly recognizes a living thing from, say, the motorbike it is resting on?
After a few nights in my own bed and my own environment I have recovered enough to take stock. Where am I now and what has that hospital visit cost me? Well, I am really getting to the last chapters in my book, that is where I am. I am also behind my monitor, almost all of my waking hours, in fact. Do I want to spend my last days like this? Do I have a choice? The challenge is still: don’t get bitter. Ok. Let’s give it another go. As for what this hospital visit has cost me: more than I care to admit. I have no idea how much lust for life I have left, but now I at least understand it is not infinite. And the burden I create for my loved ones is getting more and more difficult to live with. So, the hospital knocked some reality into me. I have always wanted my experiences to be as real as possible, so, thanks, I guess. Heh. You know, writing this stuff down is almost like Therapy? I start out with complaining and along the way something transformative pops up.
Oh, as for the subject line, I stopped explaining them a while ago, but they are still relevant. Karma police, the song, expresses the quiet desperation I felt while writing the post, and the immature insanity of Die Laughing is appropriate for feeling worthless, and isn’t it Therapy?, too?