6 years ago today I stumbled into my doctor's office. I didn't know then but I was lucky. I was lucky she diagnosed me correctly and immediately with Guillain-Barre syndrome. She sent me off to the hospital where they were waiting for me in the emergency room. yada yada yada I was admitted into intensive care and got worse really fast. 5 days of IVIG, rehab,plasmapheresis treatments some more IVIG and back to rehab.
They thought that would do the trick and stop me from getting worse. But it didn't. I got worse and rehab,. That really wasn't supposed to happen. did everything they were supposed to do to stop me from getting worse.But I got worse. So in the hospital I spent a couple of days laying there doing nothing And dear reader, when I say laying there doing nothing please do not think I'm exaggerating. like today a lot of people can't leave their house so they say they're laying there doing nothing. I was basically a quadriplegic . I was able to wiggle my hips and shoulders a little. My neck and face and head we're okay. I was not a vegetable. that would indicate I was in a vegetative state. I was fully awake and alert. I literally could not move a muscle and had no reflexes. Med students lined up to tap my knee with a little hammer. One of them commented that I was just like his cadaver and my doctor punched him in the chest to remind him my ears worked okay. They gave me a special button so I could call the nursing staff if I needed help. It was really sensitive and I was able to tap it with my head. I didn't know it but there was a tracheotomy kit in the room with me the whole time. They were concerned that the paralysis would pass my shoulders and I would be able to breathe on my own.
I asked one of my doctors if they had a big room upstairs with a giant oval table and lots of windows where they all sat around and talked about me. She said yep, and we got guys on TV screens joining us from London and Tokyo and Paris. So I guess I don't have to get a second opinion from Columbia University. Nope he's in the room too.
The doctors came back to my wife and me with the plan. An off-label non FDA-approved chemotherapy. They shared all their information with us. Like stats on how many people who were more or less like me got better and how long it took. And the likelihood of me getting violently ill from the chemo.
I felt comforted by the fact that a bunch of really smart doctors were talking about me like I was a challenging puzzle. None of them knew me and that didn't matter. Fixing me was there reason for going to work in the morning, I was important
Well, I could walk. damn, I can run oh, it's at half the speed I used to run but I can run. I can hold a fork. I can brush my own teeth. I can get on the subway or an airplane. I'm not so sure about driving, but I live in Brooklyn. I can't lift heavy things but I can't hold a beer. I adjusted. I'm not 100% happy. but I could walk and I'm certainly not dead. When I was in the hospital and they told me I'd be fine in a year, I jokingly replied “ but I'm in a Friday spot, I gotta move my car!” But I never got to move the car or even go back to work. I've adjusted to what I hate to say is The New Normal for me
Kind of gets me thinking about what's going on on our planet right now with covid-19. We got almost every smart doctor and scientist in the world trying to solve the same puzzle. Working together and independently eventually there will be a solution. What things are going to change. there's still a lot of unknowns. so we might have to accept it and I hate to say it is the new normal.
So people! someone who's been through with this shit it's kind of obvious. life's not going to be the same. right now people are dying and we don't want that to keep happening. that can't keep happening. there have to be other sacrifices. Given a choice I'd rather sacrifice 50,000 person road races and baseball games in arenas and luxurious cruises over our elderly.
Today I read the obituary of the first person that I've met who died of covid-19. Not a family member, not a friend at all, just someone who's hand I shook once. In Brooklyn he was kind of a corney celebrity, But a few years ago my running club had its Awards dinner at the Grand Prospect Hall. When people started dancing I figured I'd sneak out and give myself a tour of the rest of the building. I wasn't the only one with that idea and the owner happened to be in his office and gave us a tour. He was really proud of the place. it was only 10 minutes or so but he was a really nice guy. I bet his family and the people who knew him well miss him.
Hope you Healthy Mate Take care Stay safe
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