Lonely Daze, Lonely Nights...

February 18th, 2008

I apologize for the graphic photo. It is actually the first time I have seen it on my computer. It was a photo that Mike snapped of me with his cell phone and the only one to my knowledge of my time in the hospital last year. The reason that I wanted to share this with you is that I just finished reading the book, "Bed Number Ten" by Sue Baier, a woman who suffered through Guillain-Barré syndrome back in the early 80's. Although I knew about the book last year, I just couldn't bring myself to read it. I was afraid of it. Of the memories that it would bring to the surface and how I would react to it.

For some reason, when a friend of mine, who is going back to school to become a nurse, mentioned how much she liked the book, I really wanted to read it. So I ordered it. I stared at it for a day. Then I took the plunge. And very quickly, I was drawn back into a world that I would rather forget. I think I cried every couple pages until closer to the end of the book. The struggle of being completely paralyzed except for your eyes yet being able to hear and feel everything. Being hooked up to the ventilator because you can't breathe on your own, and now you can't talk either. Having no way to call anyone for help except with your tears. And the worst of it was the nursing staff who thought I was a nut job at first, and even when they realized this was as real as it gets, treated me like I didn't even exist.Oh the stories I could tell you...

Just like Sue, I had the best husband, family and friends who were there to take care of me, my home and children when I couldn't. I also had some excellent nurses, although they were few and far between, and if I had my way would have been with me 24/7. Obviously that wasn't realistic but oh how I dreaded when their shift ended! Who was I going to get now? What kind of torture would I have to endure for the next 12 hours? Would I ever sleep through the night again? And on and on and on.....Most of the Doctors were pretty cruel as well, unless they wanted my consent to present my case in front of others, for teaching purposes. Then they were all smiles and warmth. Guillain-Barré syndrome is very rare, only occurring in approximately 10  per 1 million people each year. So each hospital in Kent County might only see 1, maybe 2 cases per year, with each patient presenting differently. Crazy, huh?

My point is, if you ever wanted to know what people like me have to go through with this disease, you have only to read this book to find the answer. Although Sue was in the hospital MUCH longer than me (the medical treatments that I received did not exist in the 80's), our stories are the same. I would love to meet her some day and I think that, in the future, I would like to help other families who are suffering with GBS.

....In case anyone is interested, you can see my breathing tube, feeding tube and suction tube in the picture. I could wobble my head slightly at this time but not much, which is why I have several rolled towels there to support me. I could not move, other than some finger twitches and eyes. I needed to have a cloth tucked under my chin at all times to catch the constant drool pouring out of my mouth. You can't see the 3-pronged port in my neck, but it pulled and itched all the time, just like the tape on my face. Even though the physical scars are disappearing, the emotional ones are still raw and healing.

Thanks for letting me share this...it's another step forward for me on the path to being able to help others who are suffering. I appreciate your support more than you know...