“I have a friend- a singer, a good folk singer, song collector. He comes and listens to my shows and says ‘you always sing about the past, you can’t live in the past,’ and I say to him ‘I could go outside and pick up a rock older than the oldest song you know and come back here and drop it on your foot. The past didn’t go anywhere, did it? It’s right here, right now.'”
-Utah Phillips
Longtime readers will remember my fondness for that quote. It is one of my dominant themes, both of my writing and of my life.
My health has always been somewhat fraught. Hormonal problems resulting from a benign brain tumor removed at 9 months old. Fibromyalgia. Migraines. Arthritis. Asthma. Etc.
Everyone has at least one personal sword of Damocles, I think, and my health is one of mine. Like most people, I imagine, I treat what is possible to treat, and grit my teeth through the rest. I pretend that the sky doesn’t hold a shadow, because I know the wind blows, and I’ve been waiting almost my whole life for the tide to come back in.
Now it has.
The day before my 30th birthday, I learned that there is a cyst encroaching on my pituitary gland, in the same place the tumor was removed from in 1988.
I don’t have an exact date yet, but in the near future, I will be traveling to have it removed. My surgical consult is tomorrow.
~~~
There is some good news. Due to its proximity to the optic nerve, cysts in this area will sometimes encroach on the patient’s optic nerve, diminishing their peripheral vision. I have been evaluated for this twice, and there have been no neurological changes. Some people present with headaches. I am a nearly lifelong migraine sufferer, but those and other headaches remain steady for the moment.
Still, the last few months have been hard.
New conditions. I have osteopenia, a downstream impact of the hormonal imbalance. I likely have celiac disease as well, and I haven’t even begun to engage with that because, well, a little busy right now. (When my provider informed me of that, I laughed because there’s nothing wrong with my sense of absurdity.)
New routines. Medications. Schedules. Exhaustive notes. Constant logistical problems.
Waiting. Always waiting.
In 3 months, I went from 3 daily medications (one of which I never used, one of which was weekdays only, and one of which was new) to 10.
In theory, I am better poised to handle this than many would be. I am relatively young and intelligent, I’m both literate and health literate, and I have been in, around, and quite interested in healthcare for my whole life. I am familiar with the concepts, and I know all the steps of this dance. In practice, I can’t hold a thought in my head. I feel like all of my brain cells have been removed and replaced with packing peanuts.
This is not who I’ve always hoped I’d be, if the tide ever rolled in. That’s really hard to accept.
I’m reluctant to post this for many reasons, mostly because I am a private person, and I prefer to keep discussion of my affairs to a minimum. Also, as you’d likely imagine, I’m sick of thinking and talking about this, and I’m ready to get my life back. That said, I would rather you hear it directly from me.
I will not deny that I’m terrified, but fear doesn’t excuse you from needing to act.
I don’t do platitudes, and I don’t have any cutesy sayings or slogans. What I do have is support, momentum, and muscle memory. I’ve worked with less.