Personal Support

I meant to write this post a month or so ago but never got around to it. This morning, though, a conversation with a friend reminded me that this, of all things, is something to document in a semi-public forum. Here I am, then, documenting it semi-publicly, basking in my own glory (what else is new?), and reflecting on all the weirdly fantastic progress I’ve been making. If I pinched myself every time I wonder if this is all some twisted dream from which I’ll wake up only to discover that I’m still bedbound and miserable, I’d be a pointillist masterpiece.

For a little more than a year, I had twice-daily visits from personal support workers. In the morning around 8:00 and in the afternoon around 4:00, a friendly-ish visitor (seldom the same person) buzzed up, let herself—for it was always a person self-identifying as a woman—in, and busied herself taking care of the tasks most adults prefer not to delegate to another: bathing of body, brushing of teeth, and the list goes on.

Until late summer, their help was absolutely indispensable, and while I wasn’t thrilled that I needed the PSWs, I begrudgingly accepted that were their visits to cease, sedimentary layers of grime would rapidly accumulate on the entire surface of my skin. Sacrificing the strange degree of modesty I’ve sought since I was little—one of my clearest childhood memories is of asking to bathe fully clothed—was a trade-off that had to be made.

As time wore on, though, my health and strength improved and the frequency of my “I don’t wanna deal with this” thoughts grew. Before long, I entered a transitional period during which I still required outside help but was well enough to question that fact. Near the end of this phase, the PSW visits began taking me away from the full life I was beginning to live rather than being an anchor in my day, and at the very end of it, I kept the service only at the advice of medical professionals who considered it a safety net, something to catch me should my health take a turn for the worse.

It wasn’t a discrete event but rather a convergence of them that led my husband and I to cancel the PSW visits. Despite my true wish—to make an impulsive, unilateral decision and stubbornly refuse to sway from it—I instead approached this like the responsible adult I am: with an abundance of caution. First, I asked my OT for an updated in-home assessment (more about that some other time). Once I had her conditional blessing to bid adieu to the PSW situation, I contacted my community-care coordinator to see if PSW visits could be reinstated in some dystopian future in which my care needs increase. She ran through the surprisingly flexible options. After a little more consultation, all key players agreed that putting the service on hold on a trial basis was the best course of action.

Two weeks ago, the agreed-upon two-week test period came to an end. Absolutely no issues had arisen, so we went ahead and made the separation a divorce.

All has been totally fine. More than fine, actually.

One of the most valuable aftereffects of discontinuing the PSWs has been that responsibility for the support they used to provide—again, support that I’m really, really grateful I had the privilege to receive when I required it—now falls on me. Relying on myself is great. It’s as if instead of working on the most frustrating group project in the world, now I’m working on an immensely satisfying single-authored paper. Since there are few things I hate more than not having the freedom to micromanage what’s of real consequence to me, supporting my own person is pretty fantastic.

You better believe that the paper I’m writing (“paper” being, of course, a confusing and stretched metaphor for “my life”) will be as typo-free as I can possibly make it. Group work is fine in small doses, but I much prefer independence and autonomy.