Some Serious and Silly Words With a Friend

“I know all too well it don’t come easy,

The chains of the world they seem to movin’ tight.

I try to walk around, if I’m stumbling so come,

Tryin’ to get up but the doubt is so strong,

There’s gotta be a winning in my bones.

I am looking for freedom, looking for freedom,

And to find it cost me everything I have.”

I was reminded of the song “Freedom” by Anthony Hamilton and Elayna Boynton, from the movie “Django Unchained,” via a response to last week’s column. The comments came from a former college acquaintance, then work colleague and friend, and now a member of my remote inner circle.

I knew of Dennis Daniels from my days as an engineering student at Bradley University. I was a year ahead of him. This meant no classroom intersection, but enough pedestrian hall-passing that I could pick him out of a lineup.

Upon graduation, I accepted employment at what was then Baxter Travenol Laboratories. A year later, Dennis migrated to Baxter as well, landing in the same department, with a cubicle across the aisle from mine.

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We bonded over several misadventures, including acting as co-chairs of the picnic committee, and after picking up on a pronounced rank-and-file ambivalence about the departmental tradition, unceremoniously canceling the event. Our judgment — or lack thereof — earned us a stern reprimand from management.

We also ran the first ever NCAA basketball tournament bracket at our site.

Our friendship evolved to the point that I was a guest at his wedding. Eventually, Dennis was recruited to more lucrative pastures, and he left the company and the area. We drifted out of touch.

Somewhat magically, we reestablished contact about 10 years ago, catching each other up on the tangled webs that each of us had woven. Our friendship has only deepened since. He is a faithful reader of these columns.

Last week’s piece prompted Dennis to observe that, despite the horrors of ALS, I spend my time productively. He complimented me on my willingness to engage in introspective contemplation, no matter where it leads. He lamented his own preoccupation with the “blocking and tackling” of life.

Whatever truth in Dennis’ overly generous remarks led my mind to the selection from the “Django” soundtrack. In a sense, I have been granted a freedom. ALS has rendered me powerless to influence any necessary real-world outcome. As emotionally appalling as that is, the net result is that I have far less pull on my time. Once I came to grips with that fact, my list of categories worth worrying about shrank dramatically.

There is mental freedom that ironically can accompany physical infirmity. Without the day-to-day dragons of life to be slayed, the mind is freed up of much flight-or-flight survivalist clutter. In my “same day, different shirt” existence, I have an abundance of cognitive energy to expend. The wonder isn’t that I occasionally capture in writing a thought that will resonate with someone, but rather that I’m not more prolific.

Of course, this freedom comes at a cost: Like in the song, the price tag for me has been “everything I have,” which is far too steep a price. But I was omitted from the negotiations and am left to make the best out of the deal-making aftermath.

In professional sports, teams often trade players. From time to time, uncertainty surrounds a specific player. Popularly, this is referred to as a “player to be named later.” It may be rationalizing, but in my optimistic eye, the ALS cauldron is half full. Intellectual freedom and unfettered curiosity are my “players to be named later.” Use them or lose them.

Likewise, I don’t fret about unfinished business. When one is no longer able to pick up a bucket, what’s the sense of maintaining a list?

That leaves time to kill while being sequestered on death row. I endure the appeal process by enjoying as much as possible, learning what I can, sharing when able, and increasingly praying for others. It’s my version of the “reflection pool,” a reservoir that every ALS patient learns to bask in. It’s the gift that comes with freedom purchased at such an exorbitant fee.

A few additional highlights from Dennis’ note: He inferred that I likely don’t fall prey to trivial pursuits. I wish. I could write a book titled “Time-Wasting for Dummies.”

Dennis admitted to playing “Words With Friends” (WWF) while nobler endeavors are left in abeyance. He assumed that the lure of that diversion was somehow beneath me. Dennis, if you’re reading this, consider yourself challenged to a serious round of WWF.

Dennis even mentioned me in the same sentence as the late Stephen Hawking. Now that’s just silly.

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, and are intended to spark discussion about issues pertaining to ALS.