Why Me?
In December of 2014, the question of “Why me?” was all I could ask myself and may be eternally unanswered. With all the experts, medical professionals and specialists doing their poking, prodding and even surgery, that question weighed heavily on my mind. I didn’t know how, when or if ever, I would get an answer to, “Why me?”
I remember very clearly, it was a Saturday, the 13th of December, 2014, when a tingling, achy sensation, deep in my arms first manifested. As the days passed, I began to lose control of my arms and was unable to lift them at all. It wasn’t long before the affliction was spreading throughout my entire body. I was even losing the ability to walk, which made me realize that this wasn’t something that was going to fix itself. I needed medical help, immediately!
Upon my arrival at the hospital, barely able to walk, I was admitted. So began a barrage of testing with various specialist. No one could diagnose this mysterious illness which had overtaken an otherwise very healthy man. This is approximately when the question, “Why me?”, first reared its ugly presence. These tests continued for several weeks. Finally, a doctor visiting from out of state gave me my first real diagnosis. I had GBS, Guillain Barre Syndrome. It was then, I finally asked when I could go home. It had been three long weeks of unanswered questions. Now, I had an answer. I was ready to get on with the healing and back to living my life. The answer to that question was not one I was going to like. The answer was, “not for a while”. Little did I know, the difference in my definition of that time frame and that of the seven different specialists was about eight months!
The time was now, fight or die and the decision wasn’t easy as it sounds. First there was confusion and sadness, then depression. The thought of being totally dependent on nurses and aids and family, to do all the small everyday things that life entails and that I had done for myself for 56 years, was shocking to say the least. From general hygiene to being fed, bathed and changed, doing things for myself was no longer an option. All of my dignity was lost and there was no sign of improvement. I was totally exposed in so many way and the question of “Why me?” lingered and most days I wanted to give in and get out of my mental and physical suffering.
As days turned into weeks and weeks turned into months with still no sign of improvement, I finally received a second diagnosis of CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. CIDP and GBS are relative neurological and immune disorders with CIDP being a chronic form with permanent effects. The disorders affect the ability of the brain to send signals throughout the body and get a response or reaction. Rare as it is, there is no known cure, only treatments to lessen the symptoms. One in 500,000 people have had this disorder, most never recover. In my case, I have been very lucky that, with the aid of many medications as well as monthly IVIG treatments and physical therapy, I have been able to regain most of my mobility and continue to see improvements.
After eight months in the hospital, three weeks of intense therapy, months more in a wheelchair, then a walker. I now walk with my staff due to nerve damage. I continue to improve daily toward a full life that, for a while, was only a glimmer of hope which kept me fighting. Still that question of “Why Me?” may never be answered and will haunt me for the rest of my life.
Chef
John Bouche
