I realized something on the drive home from therapy. So much so that by the time we'd exited the parking garage, I'd completely forgotten what we'd touched on in those last minutes after my hour was over. Five days later, I still can't remember my homework.
I’ve been seeing this therapist for a couple of months now. Besides a couple of one-off sessions following the death of my brother and my ALS diagnosis, I don’t have any experience with therapy. But I do have an idea how it works and what it can do. For me, I want it to be a place for unique ideas and discussions, things I don’t often talk about. Things that, in all likelihood, make me feel uncomfortable. Vulnerable.
I’m more open than I was (in my former life), but I’m still human, and a man—continually and overwhelmingly programmed to hide faults, ignore feelings, never show weakness, and push through. So, despite my progress, it’s still difficult. Vulnerability is a moving target; make progress on one goal and there’s always another.
I forced myself to talk about sex and relationships, or mostly, in fact, the lack of these things in my life. We’d already discussed my general loneliness and the universal need for human connection. This was a bit different, a bit deeper, and I couldn’t put my finger on it.
What does it mean? All of it: from the smallest thing, that little dopamine hit from matching with someone new, to the most meaningful things that for me, might only exist in my head. Truthfully, I was thinking of sex, but that’s only a (particularly spectacular) example.
It’s validation. And that might sound trivial, shallow, or obvious, but I think, for me, it means more. Everyone wants to feel attractive, desirable in one way or another. But I want to feel human. A real, full, human man.
Oftentimes, that can be difficult. While I feel more secure than ever in so many ways—surely a combination of simply growing older and loads of self-reflection over the years—there’s little reason I should consider myself “a catch.” My vulnerabilities cannot be hidden; you see me, you see a wheelchair—skinny arms and legs, an oversized head and floppy neck. Anything to the contrary requires proof.
That validation used to come so easily I didn’t even notice it. I certainly didn’t think I was special, or especially desirable. Everyone flirts, and besides, it wasn’t usually anyone I really wanted. (Except sometimes it was, and I was too oblivious or nervous or scared to see the reality: she likes you!)
Nobody’s checking out the man in the wheelchair. I’ve tried, at times, to catch someone’s eye; they don’t even see me. But obviously, though an innocent smile or prolonged flirtation may feed the ego a bit, it isn’t what this is really about.
It’s about sex! Of course! Well, not really; it’s about much more than that. It’s about proving to myself that these things are possible, that someone would want to be with me. And that I’m capable of everything that’s required.
People with ALS are constantly evaluating their physical abilities. We search for validation that we can still stand up, or lift our arms, or, in this example, have sex. (For the most part, people with ALS can have sex, but obviously the reality is more complicated than simply can or can’t.) Knowing that you can still perform any physical task is a very big deal. It’s another piece of yourself that still exists.
And then there are all of the usual ways a partner can provide validation. I was out with a date at Oakledge Park, on the bike path by the lake as the sun went down. It was a Saturday in the summer with lots of people around. They saw us together and I felt that. I felt proud in a way I rarely experience: the total opposite of say, maneuvering my wheelchair into a dressing room with my mom. I felt like I was there, a full participant in a fulfilling life, not a pitiable burden borne by my mother.
That’s the feeling I want. To exist. To be in the game, not merely watching from the sidelines. I want proof that it’s possible. I want validation.