Some children remark that as they grow older, the roles they play with their parents seem to switch. The cared for become the caregiver and vice versa. This seemingly cyclical reversion to a time of jovial frivolity does not escape the patients at TCC. With his ever-reliable dry wit Raphy brings us a short anecdote that likens a festive day at TCC to a sweltering, Kool-Aid filled day at summer camp. Soon to follow will be a few case studies that emphasize why these moments of care-free fun are so important, so check back soon.
12- The Light Side of Life
I want to dispel some misconceptions here:
A few people who have read my posts have told me with a measure of sympathy in their voice that they are sorry to hear that my job this summer is so difficult and depressing.
Based on my ‘cheerful’ posts about the ravages of HD, discussions about withholding treatments, the disconnect between the aides and their patients, and family-staff discord, I understand why one would get this impression. But I want to make crystal clear that these grim, gut-wrenching tales only represent a small portion of existence at TCC. I write about these subjects because they are controversial, unusual and evocative. However, one must realize that most of life at TCC proceeds pretty much like mundane normal life. Residents eat. They watch TV. They complain about food. The few technically savvy among them surf the internet. They read, they participate in music groups, most call or visit family. Some have cliques of friends like you would find in any high school. There are a few popular residents who get visitors from suitors of the opposite gender. There are romances and even marriages. There are introverts, bullies, intellectuals, jocks and whiners. And this reality is exactly the goal of a facility like TCC – to allow residents to maximize their time remaining in this world. They do this not by focusing constantly on the inexorable approach of death but by appreciating the life and vitality that still remain. Here is a small taste of the light side of life:
Last Thursday, ESPN came to TCC and threw a sports carnival in the auditorium. Their employees ran games such as shuffleboard, bingo, mock horseracing and blackjack. The residents who were able to come down competed for colorful prizes such as t-shirts, hats and mugs. The most exciting part of the event was the water fight held on the patio outside. Predictably, the water fight degenerated into 12 wheelchair-bound residents soaking the recreational therapist. However, due to the chorea (muscle spasms) of the HD patients, most of the onlookers on the periphery were doused as well. Watching this (I held back my competitive streak that would dictate that I grab a water gun and shoot back), I was forcibly reminded of summer camp, an experience so formative in my younger years. It seems that the ‘camp environment’ of competition, play and friends can be equally central in one’s older years.