Eleven years to the day my grandfather passed. A leader of his family and multiple microcosms, I still look to make him proud. This stubborn and genial man could only be married to a woman whose affable and resolute nature could match his own. They were a power couple and some of my favorite people “in the whole wide world.” For a decent portion of my life they were essentially my second parents. I went over to their house often as my parents worked dutifully to put us on more solid economic footing. It wasn’t altogether uncommon for me to be picked up by my grandmother and be shuttled to their house. I considered myself the luckiest grandkid in my family because we lived so close and I got to be around Colonel. While immeasurably kind, It goes without saying that a man with twenty odd years of experience in the army, finishing up in military intelligence, will have a certain amount of pride. A pride that disease pays no heed.
Multiple systems atrophy (MSA). A trifecta of words that will never shake my mental catalogue. Honestly, as a medical professional I should have looked up more by now. Isn’t that what I was supposed to do? Work on finding a cure and making sure no others are afflicted. I could have had a drive that would not have been able to be matched. It would have made a great story for 60 minutes. Instead, even as I type, I can’t get past the first couple of paragraphs of the NIH’s informational page. What I find is what I already know:
- it is cruelly rare: It affects about 1 person in every 17,800. For perspective, the prevalence of autism is in the neighborhood of 1 in 70.
- It is a progressive neurodegenerative disorder. It get worse over 5-10 years, affecting both autonomic (digestion, bladder, etc.) and motor control.
- There are no drugs to slow the progression and no cure.
It was so bizarre to be sitting on the shoulders of my grandfather shooting hoops one year and then a few short years later watching him mosey about his house with a walker. Of course, I enjoyed playing with the seated walker when he wasn’t using it.
It was so unusual to help my grandmother wheel him back to their car after watching my soccer games, when he used to track down my miss-kicks. Of course I went right back to my friends after he was stowed away with his seat belt.
It was so strange to hand my grandfather his Christmas present in his maroon recliner while his hands fought to steady his intention tremor. Just years before we would throw a football in their shady backyard. Of course, I could hardly wait to grab my own presents.
It was unsettling when handshakes morphed into me latching onto his hand. It got confusing when his speaking became quaky and labored, and compelled me to wait for his abbreviated utterances. It was concerning when the flights to Maryland for a clinical trial didn’t improve his condition. It was jolting when I walked in and the Colonel was getting fed by feeding tubes. It was shattering when I saw my tough as nails grandmother cry for the first time.
It was painful, after eight years to watch Colonel be reduced to communicating via eye-blinks. It was painful when my mom came in to tell me he had passed from a bout with a simple virus. It was painful when the brisk, windswept fields of Arlington battered my eyes as they remained locked; looking at an American flag lying over his casket. It was painful hearing the rhythmic clop of the horses’ hooves as the procession meandered to his final resting place. It was painful as a squad of rifles pierced the hushed air with their barrage of final salutatory volleys.
What was most painful though, was learning and growing to appreciate my grandfather, outside of his existence to me; realizing how much was lost on me and my youthful world and knowing neither of us ever got the chance to shake man-to-man.