“Chopsticks,” I murmured to myself. Six months ago, I could use chopsticks so well no one would have known I had medical issues. However, last Friday, I could barely manage to hold and align chopsticks. Everyone looked at me out of the corner of their eye. Smiling embarrassing so, I shifted to laugh it off, “Chopsticks.” Chopsticks wasn’t the word I wanted to use: I wanted to cuss. I wanted to shout, “F**k it” or “God damn it.” However, in the civility of dinner, I muttered, “Chopsticks.”
Later, as I overlooked the lakefront while sipping tea, I observantly admitted I oscillate between several life tracks. One track is optimistic. An optimistic track included a senior manager inquiring if I cared to work past the retirement age of sixty-five. “I don’t believe our department will have a solid talent for the foreseeable future. Are you willing to work a few years past sixty-five?” The realistic track says, “Each stage of Parkinson’s is sixteen months. You’re unlikely to work in three years, let alone to age seventy.”
So, do I aim for a track that’s likely to happen, or do I place faith in a path where there’s little room for error? Maybe my ‘Chopsticks’ moment pushes me toward a different journey — the journey of ‘What can I let go?’ And, “Is there a time when you (meaning I) can let go of my self-sufficiency?” Almost everyone finds it easy to let go when ‘choices’ are luxuries. Have extra pots and pans? Yeah. I can let go of the extras. Have extra clothes or furniture? Sure. I can let go of them. However, when battling a terminal disease, the right question might be, “What can I not live without?” Can I surrender what happens when I cannot do anything to remedy my situation and am forced to accept my helplessness? Can I accept knowing there is nothing humanly possible I can do to make things my life easier when I am at the mercy of others?
For better or for worse, I’ve become my own diagnostician. I have apps (applications) that constantly query pain levels, balance, and tremors. And, I continually read and research for alternative treatments that might mitigate symptoms? (No, I do not study for cures.) Then, of course, I can take all the prescribed medications, write detailed notes from the experts I’ve seen, or place my name on some waitlist for some new research therapy and hope for a call before I’m too far gone. But at the end of the day, I am going to get sicker. I am going to die. I could do everything right and still have everything go wrong—all this leads to bargaining.
Bargaining is not about deal-making with God. “Please, God, if you heal me, I will be the best I can ever be.” My version of bargaining wages wars against the facilities of today’s medical system. What can I do with insurance? Is the procedure I am undertaking covered? What will insurance not pay? Then again, can I even tolerate the level of human degradation I am bound to endure? “Maybe I should live with what I have,” I reason. Can I handle the lightheadedness? Can I tolerate cramps? What level of pain can I tolerate? If I take that Codeine, can I accept constipation?” And ultimately, succumbing to the reality track, “When should I apply for accessible parking, an admittance of succumbing to Stage 2 Parkinson’s. Even with all my measurements, my progression went unnoticed, even to me.
Pre-disease measurements were different than new measurements. Before terminal illness, many concerns were laid out in particularly unglamorous ways. Am I good enough to get that job? Damn, this zit? Will someone love me? Will she love me? It was a great ‘Winter.’ It was a bad ‘Winter.’ It was a mild ‘Winter.’ And, what the hell happened to the Cubs? Post-disease, trivial measurements disappear, and life is swallowed by quantified by units of drugs and measurements of pain. ‘Buzz. Buzz.’ my iPhone alerts. ‘Time to take your medication.’ Can I walk up that hill? Damn this pain, God.
My ‘chopsticks’ moment reminded me of something so raw and utterly terrifying about having life spin out of control. I fear that everything human will no longer belong to me. My ’perfect (albeit illusionary) world’ was shattered. The illusion I could live in self-sufficiency disappeared by of all things, through cheap wooden chopsticks. That simple moment made me realize that someday, someone will have to care for me. Someone will likely have to wipe my butt, bathe, and clothe me as I watch politicians on television expound how I absorb too many resources, that I had either get up or die. I fear being stripped bare and my humanity left for a plethora of jokes by insensitive caregivers.
Somewhere in all that, some idiot will say, “Find your meaning? What is your passion? Go do it.” Yet as death nears, I am likely to walk in silence, the same silence that current hides my pain, wishing, maybe even hoping, God will push away the inevitable. But, in the end, there will be only one track. And so, a thousand possible different paths will succumb as well.