My first symptomatic expression of ALS may have been as I left a football game. I fell flat on my face. At the time, I blamed it on the sun and the beer, although that combination in the same dosages had not felled me before.
Shortly after, I became prone to occasional, random stumbling. These balance lapses I attributed to aging and a lifetime of basketball. About this time, I also began experiencing an irregular gait during my recreational runs.
I finally admitted to myself that something was wrong when I tried to walk across the street. Judging the pace of traffic while counting on my known foot speed, I envisioned a brisk jog kind of crossing. Only I couldn’t. The quicksand containing my left foot would not release it. Disappointed, but not despondent, I resigned myself to certain surgery on my left ankle.
My procrastination, from an expense burden standpoint, proved to be unwise. In the midst of all this, I had accepted a contract-to-hire position at a local startup. The “to-hire” part of it never materialized, as the startup suffered some financing woes. The temporary absence of health and long-term disability insurance, which would have accompanied permanent employment, didn’t trouble me. Physically, I was in fine shape, with all critical blood tests in the optimal range. This was my mindset as I headed to see my doc.
My appointment was with a physician assistant, further demonstrating to me that the situation, in the grand scheme of things, was routine. The assistant noted that my left ankle seemed locked, noting it as the likely culprit in my “walking drunk while sober,” as I had begun to call it. With that, I had a referral for a trip to an orthopedic specialist.
It was then that the curveballs began. The doctor, after acknowledging that surgery would certainly clean up my “ankle crap,” said he thought there might be something neurological in play. After a battery of tests and ample time to conduct internet research, I gulped a deep breath and walked into the neurologist’s office, prepared to be told I had a brain tumor or spinal trauma, and hoping for nerve damage or some garden-variety neuropathy.
“I’m afraid you have amyotrophic lateral sclerosis.” ALS. With that pronouncement, my senses went haywire. All sound reduced to white noise. Save for a small, fuzzy but bright circle in the distance, my still-opened eyes produced no vision. I could neither taste nor feel. A ball of bile formed in my throat. It was only later when I coughed it up that I became aware of its presence.
I wondered if I would live to be 50. I was two weeks shy of turning 49.
I thought about Lou Gehrig. When I was very young, I watched “Pride of the Yankees.” For several nights afterward, I dreamed that I had ALS. My father offered comfort, emphatically stating that I never would develop the disease. Little did we know that there was no expiration date on nightmares.
For the first and only time in my life, I contemplated suicide.
In hindsight, I should have acted differently. While there is no outcome advantage to an early ALS diagnosis, I would have sought medical intervention sooner. From a practical standpoint, the delay cost me in uninsured medical bills. That, plus the difference between what my social security disability benefit is and what my long-term disability insurance payout would have been, are not trivial. And it’s not just monetary pain. The intangible opportunity loss of not being able to decide whether to check off “bucket list” items, prior to greater functional decline, is incalculable, but real nonetheless. My procrastination was punitive.
The other aspect that I’d change is to have sought input from an ALS patient. In the immediate aftermath of my bombshell dropping, pressing concerns loomed large, such as what to do next, what to expect short- and long-term, what resources are available, whom to trust, and whom to be wary of. A great source of knowledge, relative to any subject matter, is a curator. What better curator than someone likewise afflicted?
Post-diagnosis, I struggled mightily for a sense of purpose. I was in the dark. Over time I found both partial purpose and some light. I now volunteer myself as a “first responder” advocate for folks grappling with the ground zero-like horror of ALS hell.
I believe the phrase “misery loves company” has relevance. But not in the manner that Mephistopheles intended. Knowing you’re not alone in the life raft has a buoyancy effect. In the Bible, Isaiah 58:10 says to “satisfy the desire of the afflicted, then shall your light rise in the darkness.” I want that light. And I want to share it.
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.