Too Late

I have a lot of Google news alerts setup. The last one I set up is there any news article that pops up where covid-19 is mentioned in the same article as Guillain-Barre syndrome. It brings me a lot of information and I'll get to that later. But last week (And sadly all too often) an obituary popped up. It was a link to this article in The New York Post about a couple that died within a couple of days each of other in the same hospital.  The article mentioned that Robert Samuels had GBS back in the early 80s. " In 2011, he published the book “Blue Water, White Water,” about his experiences with paralyzing Guillain-Barré syndrome and the medical system in general."

If there's such a thing as an official obituary,here it is.

So without leaving my chair I downloaded the book.

I've been reading every book I can that is a first-person account of what it's like to go through GPS. When I was in rehab at Rusk I read No Laughing Matter by Joseph Heller. It was a good one to start with because it was written by a writer and one of the sentences in the book started with when I was in rehab at Rusk. My doctor also remember him.

There was also Bed Number Ten. I got through it but I really didn't enjoy it. 99% of it was about This Woman's thoughts while she was locked in her body and missing her religious holidays. I could not relate. I was not that sick and I'm not so into crafting. Looking through all my reading devices I'm reminding that I read Going Full Circle by Philip Taylor. There are other books and they're all so many blogs and vlogs I even kept a list of them here

This book kind of caught me off guard. It shouldn't of but it did. It shouldn't have because I didn't read the subtitle of the book. I only used limited information to assume what the book would be like. The title meant nothing. (even after reading the book it still meant nothing, to me).   I just assumed from Mr. Samuels' nature from his obituary and from his picture  that it was going to be a very gentle book.  I mean, look at the guy. He really looks like a combination of both my  grandfathers.   I was just assuming bet if I were to meet this guy we were just have a bagel together and talk about baseball or something. Assuming is wrong. I also didn't read the subtitle of the book. " A harrowing true story of a man struggle to survive in one of America's top hospitals."

A sweet old 83 year old man did not write this book. He wrote it 30 years ago about a really terrible period In his life.  When he had GBS he was a little younger than I was when I did. His son had just started college. We had that and more in common.  But we also had in common was our anger. Not necessarily at what happened to us but at the process of what we had to go through. The way we were treated.  Physically, he was in much worse shape than I ever was and he was hospitalized 40 years before I was. I had a couple of bad days, but he had a lot of them and they were much worse.  In this book you didn't hold back any four letter words in describing his feelings.  I didn't have to get much into the book to realize that it's kind of the book I would have written but he writes much better than me.

So I've been reading books on my phone . but I just now downloaded the Kindle App and I discovered I can even borrow books from the library and read them on the app. This app is a better lot then OneDrive provided by libraries . I can highlight chunks of words and then share them as emails or really any regular way you share things

He described his first of many EMG tests . I had five . I described mine here

"The zaps begin, slowly and weakly at first, and then they pick up. The jolts are making the muscles in my neck jump and burn. I’m surprised I don’t smell smoldering flesh. The pain is horrible. I’m weeping. If I could, I’d be howling. “Hold on,” the Van Dyke tells me impatiently. Hold on how, you stupid shit. My hands don’t work, nothing works, and my father is dead! He’d kill you if he could see what you’re doing to me."

I tried to pay attention everything the doctors were saying . But sometimes I just couldn't accept that it was going to apply to me. This is how a wordsmyth does it

"He’s rattling off more percentages, but I’m having a hard time following him. It’s like dreaming about odds on horses that might run next week at a track you’re not planning to visit."

Below is how I felt sometimes ..... That this is all temporary. Especially when I was in rehab. I was surrounded there by so many people who are never going home. But it did remind me of something to the opposite . I was hospitalized during the Ebola crisis in Africa . An American Medical worker came back to the United States when I was in rehab. I kept my mouth shut but I was really pissed off when they put her on TV riding a bicycle around her town . I was still in a wheelchair , why did she get to be on TV because she can ride a bicycle ? then she had lunch with Obama . Damn, I was still in a wheelchair, I wished I had Ebola . I was thinking that if I ever get better from this they should let me sleep in the Lincoln bedroom,

"But my condition is temporary, I remind myself. They’re all worse off than I am. The guy with the stroke can’t talk. Enrico and Joe will never be normal. I’ll make a full recovery. I’m like someone temporarily living in a homeless shelter while waiting for his inheritance to come through."

"Then she’s gone. Everyone gets to leave, but I’m here twenty-four hours a day, seven days a week. That’s the terrible loneliness of illness. There should be relief patients just as there are relief nurses. When do I resume my normal life? This patient is burned out! Phone down to the bullpen and warm up someone else!"

There were a lot of other parts in the book where I felt I can relate to the author. Especially because he was from a town just north of the Bronx and in the hospital at Columbia University. There were many moments where I thought it would be a good idea to contact him . I could share his book with other people I know that have GBS and then maybe we can go meet him. or he can simply be a guest at one of my meetings . Or maybe I could have just sent him a note telling them how I can relate to his book. Then I remembered meet people for lunch and we can't have meetings and how I found out about it; by reading his obituary . Fucking Covid-19