One man's poignant perspective on how to handle suffering and MS

One man’s poignant perspective on how to handle suffering and MS

The Culture
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This blog post is a repeat of a previous post, with one exception: It is the entire presentation I made this past March to a Catholic Physicians Guide in Madison Wisconsin. A dear and longtime friend and former parliamentarian and Canadian diplomat, the Hon. David Kilgour, asked for my speaking notes about grief and suffering incurable disease and adult onset disability. I posted them below for him. although this post is lengthy, it is my hope that other readers of the HumanLifeMatters blog may a kernel truth or consolation in my life experiences. 

Good morning. I have asked to give a presentation entitled JOURNEY THROUGH GRIEF OF DISEASE TOWARD MEANING: A CASE STUDY. I want to lay out for you some pertinent points in my 33 year experience with incurable disease and adult onset disability that came in the form of multiple sclerosis. I will chronicle the course of the degenerative physical disease and accompanying emotional and spiritual consequences. I will tell you some helpful and unhelpful things health care professional did or did not do. 

And I want to explain how my journey toward meaning involved a redefining of self and self-image; a discovering or rediscovering of significance — not only in myself, but also my family, my community, but most importantly in my relationship with Christ and Him to me. And finally a new ever progressing and  evolving understanding of meaning and a clearer sense of purpose in my life. 

In March of 1984, I awoke one morning with a thick, clammy blanket of severe numbness from my waist down. I could walk fine, but I couldn’t distinguish hot from cold or sharp from blunt. All sensation was, … well, blunted. My GP thought I had pinched a nerve. Then a few days later the same thing happened to my right arm, except there was pain.  I couldn’t hold a pencil or turn pages of a book. My doctor thought I might actually have a brain tumour and sent me for tests a cancer clinic. 

Happy that was possibility was eliminated but it began a long series of tests for different diseases and conditions. 

Back in 1984, coming to a diagnosis of MS was very much a process of eliminating other things. That process ended with a lumbar puncture. My treating neurologist was looking for the presence of certain blood proteins called oligoclonal bands. 

After the lumbar puncture I was laying on a gurney while the neurologist was finishing some paper work. I asked him what he thought I had. Just as casual as you please, he said he was pretty sure I had multiple sclerosis, closed my file and walked out of the examining room, leaving me alone with my thoughts. He may as well have kicked me in the chest.  This was my first exposure to a physician skilled at diagnosing incurable, serious disease but inept at consoling. 

If MS numbed my body the shock of what he said numbed my mind. It simply could not take in the reality of those words. 

[I should tell you the reason for that mental shock. A number of years earlier I was employed as client services coordinator for the local chapter of the MS Society. I saw the very worst of MS so I saw what it can do.] 

Now, it was me who would go into the harrowing fire of multiple sclerosis. It initiated years of terror as MS ravaged my body. It would attack, often without warning taking away a certain abilities or functions, then remit and return most, but not all the previous function. I would go to bed at night not knowing what function I would wake up with, or without, and no guarantee I would get lost function back. It was like was like a wild, terrifying roller-coaster ride. 


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