Before I fully wake to the first photon crashing through the probability fields into this dimension and my retina, I know something is wrong.
I am slumped down in an emergency room bed, slowly collapsing to my left side. What a seemingly simple thing. Sitting up. Sitting up straight. I have slumped down on a couch or in an office chair countless times in my life. Normally, with little thought I would take one or both hands and push up, centering myself in a more comfortable, more erect position. Only this time I am stunned and then terrified to find I cannot upright myself. I cannot straighten up. I cannot keep myself from slowly falling over. I watch myself list and sink as there is nothing I can do to stop it.
GBS
Being unable to move is frightening in a way no previous experience had prepared me. I can move my toes and fingers upon request but only with great effort. Eventually I am unable to roll over or move my legs any distance in bed. My arms are heavy and slow, responding partially but falling immediately down to their nearest vertical point without the insistence of extreme focus.
CIDP
During the initial ride to the emergency room when I first contemplated my sick future, I did not know to consider the possibility of pain. I could not really fathom the nature of the pending pain. Like everyone I have been burned on a stove and by a campfire, cut my thumb half through in our camper door, smashed my toes, pulled off fingernails and toenails, broken my nose from an errant throw to second base and fractured a finger when sacked by a much larger linebacker, and like most males have been kicked in the testicles. Growing up in Kentucky and having had a horse for a brief period of time while I was a junior high school student, I have purposely and accidently touched electric fences but believe I have had the intelligence to have never peed on one. I can confirm it hurts a lot when a horse bites you. I have felt acute and severe pain, the most debilitating of which I consider to be headaches from which I fold into the fetal position, close my eyes and plead for unconsciousness.
However, I am not ready for this particular manifestation of pain. I have provided psychotherapy to people with chronic and severe back pain and cancer patients who had various levels of pain including excruciating bone pain. No amount of professional compassion for others or personal experiences with acute or accidental pain prepared me for living in constant, unremitting, insidious, future smothering neuropathic pain.
Believe in Possibilities
I see the good doctor several times at the national meetings and advisory boards we do each year. For months since my initial diagnosis with GBS and subsequent diagnosis with CIDP, I have been politely ignoring the doctor from the North. When a southerner goes up against a northerner it is true rope-a-dope. He is emphatically and continually telling me I need to be on a drug indicated for cancer he has used for various types of disorders and believes may be effective for neurologic diseases.
I smile and tell him I believe him and warmly repeat I will look into it, but in the stereotypical manner I learned growing up south of the Mason Dixon Line I do not tell him I have no intention of taking it. I believe in evidence-based medicine and the scientist-practitioner model, so I go to the literature and find conspicuously little evidence for the effectiveness of the product in the treatment of GBS or CIDP. I find little evidence because there are no published results from clinical trials for the product with GBS and CIDP period – good or bad.
So, I continue with what I am doing even though it is becoming less and less effective, smiling but ignoring his scolding each time I see him. He looks at me each time with a slight sideward eye, revealing I am the only one of the two of us who believe my excuses .
Keep Walking
The distinction between passion and compulsion is subtle. I suppose the former has a socially acceptable purpose and utility but I am not sure the experience can be differentiated.
It worked. To be strong and in little pain is profound. Decades of future returned without the cloud and fog of dread.
Payers are incentivized to inhibit experimentation, extinguishing incalculable discovery, value, and savings with each myopic denial , but experiment we must.
I am walking as a personal celebration and in hopes awareness prompts altruism and altruism discovery and discovery relief.
Above all I am walking in hope that you and all you love will Keep On Walking.