From the Start

May 16, 2010 at 7:07 am

My story will be a little different for several reasons. First of all, it is 47 years this year since I was diagnosed with GBS. Secondly, in the days when I had it, “treatment” was non-existent.

I was a week at home before entering the hospital. I was in the acute care facility for one month. That included a week on intravenous feeding after my lung collapsed because the food went the “wrong way.” Three more weeks with a nasogastric tube – also for feeding. Transfer to a rehab hospital, where I remained for three more months, was followed by three months at home, attending outpatient therapy at the rehab. After a total of seven months, I went back to work full-time.

I was 24 at the beginning of this journey and I ‘m 71 now. If I could wish for something, it would be that there is more research that examines the long term effects. How does GBS affect aging as well as the opposite question of how does aging affect people who have had GBS? For twenty-five years after I “recovered” I thought I did. Whenever anything wasn’t right, I automatically assumed it was something else, and probably worried about “Oh, no! What now.” If I could go back through those first 25 years, I might find that I would view it differently now, understanding the connections there are that I didn’t “get” then.

To conclude, it was gift that took 25 years to appreciate. I am still very involved with the Foundation, with patients and families, with learning. It changed my life for the better in so many ways. I do feel that I’ve “been there, done that” and prefer not to go there again, but I’ve also learned to roll with the punches, and that I have strengths I never imagined, so I deal with whatever comes along, appreciate what I can do, and remember to be grateful at all times.