My Diagnosis Anniversary: Revisiting the Start of My ALS Journey

My Diagnosis Anniversary: Revisiting the Start of My ALS Journey
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“Lately it occurs to me what a long, strange trip it’s been.” –Grateful Dead, “Truckin’

Last month, I quietly acknowledged the 13th anniversary of my ALS diagnosis. As in years past, I mentioned the occasion’s passing to no one. Instead, the day was spent, as it typically is, in silent contemplation of some longevity-related topics.

In recent years, that reflection has included a variation of “survivor’s guilt.” Clinically, that condition is often triggered by the unexplained and seemingly random survival of a shared traumatic event in which others perish. In my case, guilt may be too strong a word. Perhaps bewilderment is more apt. Irrespective, the question “Why me?” is the impetus.

Without much hesitation, I have thrown most everything at ALS that my financial means have allowed. However, there is no way of surmising if any countermeasure has added a single day to my lifespan. Certainly, there can be no meritocracy system in place, for I fail that test in dramatic fashion. In that causality vacuum, I am left to puzzle over the lottery-like fortune of my continued existence.

But guilt is a deft navigator. It finds an alternate route to menace me. It approaches via my love-of-family portal. The spillover effect that terminal illness has on family members is painful, often chronic, and it can be debilitating. Family members who see me regularly have been forced into a caregiving capacity, their lives indefinitely limited on account of my handicap. Those living remotely fret about me, much like concerned folks awaiting news of a stay-of-execution. Either way, my uncharacteristic survival imposes a mounting burden on the people I love the most. That is an inescapable reality.

I have absorbed other, less bitter realities thanks to the ALS journey. I now know of many more of the antagonists opposing motor neuron function. I can recite an exhaustive list of substances offering antioxidant benefits. I am familiar with the nuances of both Medicare’s home health coverage and the U.S. Food and Drug Administration’s drug approval process. I remain current on a plethora of experimental initiatives aimed at isolating a contributing cause of ALS and arresting its progression.

I view food not as a sensory delight, but rather as a necessary and priceless fuel. I am preoccupied with its safe ingestion, maximum efficiency, and the timely elimination of its waste byproducts. I have been deeply moved by the kindness, generosity, compassion, and affection bestowed upon me by individuals. Conversely, I am dismayed by the institutional apathy, neglect, and greed that I’ve encountered.

Of course, the elephant in the room is the matter of “What if?” If I had not spent the last 21 percent of my life with ALS as a constant companion, what would it be like? What would I have accomplished? Who might I have helped? How and where would I be living? 

On a day chock-full of ruminations, the only purely joyful one concerned the indirectly catalytic part that ALS has played regarding rekindling my faith in God. 

By the onset of ALS, I mostly had jettisoned any semblance of active Christianity. An assumption people tend to make is that the ALS diagnosis was the fulcrum responsible for my “reconversion.” The tale is actually more involved than that. Post diagnosis, I became inundated with numerous mentions of God’s role in my fate. Partly as an expected means of informed rebuttal, I decided to do some cursory research into the origins of Christianity.

What began as a shallow dive — fueled by partial incredulity — became a deep plunge, stoked by fascination. Only the deeper I am immersed, the more I believe in the Gospel and its redemptive power and saving grace. Whatever inherent intellect I have been gifted with, coupled with ample and ongoing due diligence, have produced an unshakable faith. 

I wear a bracelet on my left wrist. It was a gift from my precious Aunt Barb. Unbeknownst to her, she gave it to me just one week prior to my recent anniversary. On it is an inscription from the Bible, Philippians 4:13: “I can do all things through Him who gives me strength.” That mantra has been part of countless preferred outcomes over the past 13-plus years for me. More importantly, those words are my assurance that ALS will not be my end.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

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11 comments

  1. fran lancaster says:

    Rick – you are so inspiring. God is indeed working through you. I wonder if you realize how important your words are to so many.

    • Leo Conte Lino says:

      Yes it is true. From now on i will make that my mantra too. “I CAN DO ALL THINGS THROUGH HIM WHO GIVES ME STRENGTH.” (Philippians 4:13) Thank you.

  2. Paul says:

    I can totally relate as I am 10+ years after diagnosis and have felt the same survivors guilt and profound thankfulness to be alive. After diagnosis I feared not being able to walk my daughter down the aisle but that fear was unfounded. I then feared never meeting my grand kids and that became unfounded. I still dread my continued decline but I no longer am afraid of my being handicapped. I have come to appreciate each day and the small mundane aspects that each day brings. I love more deeply, laugh more heartily and live life to the fullest as best I can.

  3. SLV says:

    Loved your article. In my 13th year as well, so very rare. In past 5 years I too dug deep in my Christian beliefs for evidence and was surprised to discover I’d had way more faith than necessary. An inadvertent gift of ALS, wouldn’t trade it.

  4. Brian Stanfield says:

    Very powerful and inspiring words Rick.
    Thank you so much for sharing. In June we’ll celebrate my 17th anniversary.

  5. Dave Reckonin says:

    All those slow-progressors might reflect on the alternative lauding of their lucky stars or their God. The God that so lovingly made you slow-progressors has made others ultra-fast progressors towards the end of their existence on this earth or in this dimension, so his adoration is rather like the footballer crossing himself as he runs onto the field of play. Why would God make this player have a great game each time he crosses himself which clearly implies a poor game for his opponent.
    More pointedly, why would slow or fast progressors laud the God that created everything including ALS? Now why did he do that? To test you? To torture you? To punish you? Why do they think God is on their side when it was God who randomly scattered ALS about this earth to destroy lives and families? To praise and adore this entity, should he really exist is to confound rationality, logic and reason.
    It gives the lie to the ridiculous claim that ‘God Loves Us.’
    If God really does exist, there are two things that we can say with the fullest confidence, and that is that he certainly does not love us and that has definitely deserted us.

  6. Dave Reckonin says:

    “…and was surprised to discover I’d had way more faith than necessary.”

    Whaaaaaaaaaat ? How much is sufficient?
    What does the excess amount look like?

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