Once again I find myself powerless to move my toes. The motor paralysis is moving up my legs, and I am left alone to ponder the mortal thoughts of my condition. I have battled this beast twice before, each time returning home with the wounds that either heal or settle in for life, taking away strength, balance and sensation little by little.
How do you fight such a demon? It seems to stalk in the shadows, waiting for me to graduate from my crutches to my cane, and striking just as I put the cane aside.
Science may in the end triumph with a diagnosis for me, but for now it has failed. The healing of my faith may come full, and complete in in my body, but for now I am no more than a broken vessel. I am slowly being pressed to understand the condition of death that we all face in this fallen world, and I do not like its taste or aroma.
The concept of death to me has been a simple equation of alive or dead, on or off, black or white, but perhaps it is much more complex than that. I have noticed that each time I experience physical loss, I must go through the same process of mourning, grief, anger, and acceptance. These each seem like small steps towards death to me, and are perhaps their own kind of death.
My first brush with real death was in the form of a living will. I remember the sinking feeling as the doctors asked if I had considered what measures they should take in trying to save me if I lapsed into a coma. Me…a coma…what measures? No, I’m sorry, this was not happening! I had just arrived in the emergency room a day ago, and except for the fact that I could not move my legs, I felt great. But reality set in with the knowledge that the paralysis, moving ever upward in my body could take my life, and even if it did not, it would would certainly take a portion of me.
The second brush with death was a mere five months later when the paralysis came again. This time the disease was more aggressive. I was rushed to Johns Hopkins neurological intensive care unit, facing the possibility of being on a respirator once again. Watching my blood oxygen drop, and the medicine fought to stabilize me, I knew that once again this could be the end.
My third brush with mortality was just a few days later, as I was recovering, and waiting to be released, once again, to physical therapy. The doctor came to visit me and, in his own doctor-eeze described to me the concepts of baselines of disability. The words, though quite sterile, were devastating to me. You see this “levels of disability” were a fancy of saying that I hav a progressively disabling disease, and because they have not yet found its cause, there is no way to determine how far it will go…yes even to the point of death.
So now lying in bed with the IVig flowing once again through my body, I am faced with the fear that death might once again rear its head, while also waiting and hoping to see what might come back, and fearing to find what was gone forever.
Times like these turn me to the Bible in search of answers, but they also turn me away with the answers I find. You see, it is when I am in trials and tribulations that I am supposed to rejoice and thank God. But what do I rejoice in, the fact that I am back in the hospital fighting to regain more of what I lost? Perhaps I am to thank God for the new pain and disability that will come with this, or maybe for the many times that I have prayed to Him for healing only to get silence. Honestly, I cannot give thanks or rejoice in anything that He has allowed to happen to me, and if I am to be totally honest there is a resentment that is welling up in me that rails against the foundation of my faith.