This week I got some good news. Some really good, really unexpected news.
To rewind a bit, I recently went back for a full set of tests after having really strange symptoms. The most notable were the sudden and temporary losses of long term memory. I’d forgotten my birthday, the name of the city where I grew up, my mother’s name, and every other type of information that makes life easier when you forget your password to something.
The second strange symptom was the creation of false memories that I knew were false, and also still remembered. The false memories had a distinct feel to them, almost like remembering a TV show.
At this point, though the brain swelling and constrictions had reduced from the critical point, there were areas of my brain that were still notably swollen or constricted by damage. The doctors felt it was unlikely that most of these areas would recover, so we have been focusing on the one they thought would.
They were afraid that the new symptoms meant that area was more damaged than anticipated. They were hopeful that the new symptoms meant that the area was finally healing.
We did all the tests again.
After a tense week of waiting, it turns out the swelling went down everywhere.
My brain essentially just looks like a concussed brain now.
In the long run, that means no more dramatic and scary turns.
In the short term, it means my brain is adjusting, is seemingly running through all kinds of bizarre symptoms. They don’t last long, but they’re exhausting.
I’ve wanted to tell people the good news, but I actually feel worse than I have in a long time. Beyond the physical, this major shift is also somehow hard to grasp.
PTSD has done something strange to how I intake news. Bad news is easy. Good news sits like a rock under my tongue. It cracks my teeth, cuts my skin. I wonder why it is there. How long it will last.
My neurologist basically said goodbye at the hospital, and I realized then how I expected this to last forever even though I must have known this stage of constant hospitals would end eventually. I have been so focused on small steps forward, I did not look to see where I was going.
I was headed here, and I’m not sure how to enjoy it yet, but I hope I will figure that out, too.
I’m grateful that you’ve come all this way with me. It is nice to not walk these wacky journeys alone. Thank you.
Frequently Asked Follow Ups
- Will the headaches stop now? Possibly not. Those who suffered TIAs or strokes often have migraines forever. We’re rooting for “Yes!” though.
- Will my peripheral vision come back? It already is. I’ve screamed a lot this week as I’ve begun to see things in pieces again.
- Will my reading ability come back? I’m reading much better, thanks to my neurotherapist, but still can no longer speed read or comprehend at the same levels. But that type of stuff– like my ability to code, as well– is too macro to really say. It will be less of a struggle to re-learn though.
- When will you be fully recovered now? I don’t have a concussion, but it’s similar enough to use those time scales. It could be a few months. It could be a couple years. But, what I’m talking about here is just fogginess, quicker exhaustion, and quicker irritability. Stuff that should soon be totally gone: the moments of total confusion, the urgent-care-level pains, the no caffeine rule (though it’s still admittedly not recommended), the blood thinners, the major hormone fluxes, the appetite issues, the long term memory blanks, the false memories, the aphasia (though I’ll have to continue neurotherapy to really fix that up), and probably many more things that I’m not thinking of.