I don’t call. I don’t write. I don’t say hello. I don’t show up to invites. I don’t participate. I don’t socialize.
In the last eight months or so, I’ve been withdrawing from all aspects of my life and I haven’t really discussed why with most folks.
When I was finally diagnosed with pudendal neuralgia, my life changed. The trouble is, it hasn’t changed for the better, at least not in a lot of ways. I’m trying to change that, but you still have to be rich to get treated for pudendal neuralgia, at least in the USA. And I’m not money-rich. And because I’ve got 1,001 medical conditions, it’s not as simple as “just” pudendal neuralgia, anway.
Is it ever, really?
The pudendal neuralgia hurts. It feels like I have a burning hot poker shoved into my vagina. I’ve mostly learned to live with that. When I move my body or sit upright, the pain gets worse, and that I haven’t learned how to work around. My medical care team has me icing 20 minutes out of every hour while I’m awake. I mostly don’t do that, to be honest, because it means hardly moving. But, when I do follow ex modo prescripto, the pain does begin to alleviate. In fact, when I spend days at a time doing nothing except icing and resting in bed, I feel a lot better. I can’t live that way, though. I don’t have personal aides, I can’t afford a housekeeper, I still have to drive around for errands and appointments. But, that means I feel like I have a hot poker in me all the time. (And the hot poker is just the easiest part to describe — there’s also numbness, pins and needles, shooting pains, and other fun.)
Tomorrow, I’m getting my first ketamine infusion for the treatment of neuropathic pain. It’s the only treatment option remaining that my pain management team will consider. I can’t begin to put words to how nervous I am about the procedure and its possible outcomes. If it doesn’t work… Well, I keep putting my life on pause so that I can manage my health issues. If the ketamine doesn’t work, it won’t be on pause anymore — it’ll be on stop. I can’t continue with school or obtain sustainable employment with the limitations I have. I can’t travel or go to shows or really do much of anything other than rest and ice. To say this is causing me to feel some feelings is an understatement. I keep losing more of my life and I’m not okay with that.
I’ve spent the vast majority of my life in the mindset of “when I get better, I’ll be able to [fill in the blank].” Coming to terms with “better” no longer being an option is maybe as difficult and upsetting to me as trying to get better and never quite getting there.
I don’t have the words to adequately explain how it’s felt to not be able to live the life I’ve wanted. I can’t express how much it’s hurt to have experienced so many false starts and setbacks. I’ve lost track of the amount of times I have been excited about an idea I had or a project I birthed, only to not be able to do them because of the increasingly complicated conflux of my health and socioeconomic status. I’ve given up tallying the number of times I’ve had to abandon my own projects only to witness those who knew of those projects take them on in their own names with no acknowledgement of my work. But, after a while, the anger has eased. On most days, only sadness remains.
During the past eight months, it’s been easier to hide from life than to face the emotional pain it has caused. I’m finally reaching the point where I’m coming to terms with it all. Now, I’m trying to get myself to reach out to people again, to stop isolating myself, to keep living.
I don’t want to disappear any more than I already have.
