I've neer written to an Ape before.
Folks, you are NOT the only ones. We are out here- in ast numbers- alone and filled with lonliness and questions. But my case sounds just like Jim's. Except it was all nine years.ago.
I dropped to the floor on a weekday with a temperture of 104 that had lingered for two days. I had just arranged to meet my doctor at the hispital. Newton-Wellesley Hospital is part of Massachusetts General Hospital. Because we are remarkably sick and confused we sit down in triage at the emergency room. There was a busy day and I sat in that emergency room ffor almost twelve hours. People with Bagel cuts and soccer injuries were going in before me as my body shut down there in the waiting room. I recall meeting a doctor at 2:30am and that's the last moment in the real world for six weeks. I too had a coma in which the most amaing hallucinations occured, I wrote a blog about my ear;ly stage and a second about the hallucinatoions and the coma if you want to look. 8 months later i was told it took 9 days to diagnose me. They too suspected a stroke because of facila lapse. all of the text book symptoms had been given them: My feet tingle; high temperature. On the eighth day there, comatose and on a veltilator my wife and two daughters, 6th grade and 8th, were called at 11:30pm to come to say good-bye to me.
It's nine years later and the guilt for that stings me to tears still.
But miracles happen- or things happen. A friend of my doctor, a neurologist from Beth Isreal Hospital in Boston, stopped by to have dinner and happen to meet up with my doc in my room.
She read the chart and said, "Did you think to do a spinal protein test?"
She saved my life.
I've met a least twenty people with GBS and spoken to ma y more. Duribng the third year of "recovery" I did my own research by contacting 33 survivors of GBS And aqsking detailed questions for statistical information and then personal narratives to dig into deeper details about the disease. I am certain that I have learned things that no one else has. However, I was, as you know, amazingly sick and I did not properly doccument my citations, interviews and graphs so to take the time and energy to ppublish was impossible. I came home to a divorce and I was the one who raised two teenage daughters and a Foster son.
It's nine years later and if there is anything you want to talk about- any of you, I guess- I'm here. One of the things I've nmoticed is that most of the people I've met here are recent patients.
And yes, even though I wass in Boston, most of the doctors with whom I worked had never before seen GBS. I recall dozens of doctors standing around my bed as though I were a medical school white board. Every procedure involved an audience. I was a musician, conductor and songwriter and was used tyo being on stage in front of an audience. This led to some odd hallucinations in coma, performing from a wheelchair or hospital bed before a house of people in white coats. It makes me smile to remember it.
We never know what ;life will bring. I'm a writerr now. OIt is lonely work compared the making music and theatre.