The same as ever – ALS News Today

“And you might find yourself living in a shotgun shack…

And you may ask yourself, ‘Well, how did I get here?’ …

Let the days pass, as before.

Although I’m not proud of it, my life before ALS was largely a happy stream of idleness on autopilot. Much like Talking Heads singer David Byrne’s narrator in the song “once in a lifetime», I had let the days pass.

Ironically, the lyrical “shotgun shack” confinement didn’t kick in until I was introduced to ALS and suddenly thrust into a reality where every extra day was more than precious. The diagnosis forced an existential reckoning and examination of my purpose.

How could I get out of this? After taking inventory of my strengths and factoring in the anticipated assistance of an advocacy group, I thought I was going to manage materially. Certainly not in abundance, nor without sacrifice, but destitution and lack of care would not be my death.

Was there any hope? The near unanimous opinion – shared by scientists, doctors, caregivers and patients – was a resounding no. Any thought to the contrary was often judged to be of the “quack” variety. Call me a charlatan, but I subscribe to a modified optimistic adage: “Hope springs internal.”

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Of all the unknowns staring at me after the diagnosis, the most disturbing was how I would spend the rest of my days. I feared that anything above even a minimum of value and productivity would be an impossibility. Unlike many notable people, I had no easily transferable skills, interests, or hobbies—pre-to post-ALS—that would continue to offer me purpose after my diagnosis.

Having no passion to fall back on, I used a “hands-on, master of nothing” approach. In doing so, my activities took on a revolving/evolving door quality. As each new doorstep presented itself, I suffered from anxiety about whether I would be up to the task.

Initially, I focused much of my attention on the disease itself. What was the best science regarding its etiology? Were there any commonalities among the longer survivors? What could I do proactively to slow its trajectory? Over time, I developed a personalized resistance strategy. I modify it as my situation evolves. At a minimum, the effort leaves me with a sense of commitment.

Once the anti-ALS assault became less demanding, I expanded my scope into the regulatory arena. I made an effort to familiarize myself as much as possible with what governed drug approval and availability, and all the benefits due to ALS patients. I reached out to lawmakers and advocacy organizations for clarification, help, and future sponsorship. I continue to monitor this landscape and always reach out to decision-makers, as the news warrants.

It was with a fair amount of trepidation that I thought writing might be a worthwhile outlet and use of my time. I’ve always had a fascination with words, but the thought of writing my own content intimidated me. Afraid of failing in the creativity and style categories, I dithered when approaching an editor. Now, nearly four years later, creating a column is of the utmost therapeutic and emotional significance to me.

When I think back to my initial concern that after ALS the goal would be incredibly elusive, I laugh silently. From the point of view of accelerated decomposition, I find an urgent goal in all directions. This phenomenon dulls anything ALS dares to throw at me. I affectionately call it “the placebo effect of trying to do good.”

Recently, I was presented with a business to pursue that would generate value. While the goal is unquestionably of the highest merit, questions about my ability to contribute meaningfully plagued me.

I got involved as much as my stillness allowed in my church. Until two months ago, that meant volunteering for whatever my pastor saw fit. This turned out to be the one-time review of church governance documents and the occasional inclusion of one of my columns on the church’s Facebook page.

Pastor K visits me twice a month. Our conversations, particularly lately, have been dominated by the documented decline in national church attendance. In response, he is launching a revitalization initiative, the foundation of which will be prayer-based.

Given my zeal for writing, he wants me to put my thoughts on “paper” whenever I get so emotional. He also asked me if I was ready to be part of the invigorated prayer team. I struggle to anticipate my effectiveness in both roles, but the aim is second to none. I bet everything.

My life before ALS broke the party was a byproduct of serendipitous, directionless luck. It was mainly focused on the interior. Benefiting for others was a nice perk. My afterlife is marked by planning, discipline, and a much more pronounced outside perspective.

The days still pass, only it’s the same never has been.

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

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