This week I had yet another round of tests for the brain injury. Again. More tests. I am a freaking lab rat. Tested and tested. It seemed not a lot of imformation came from all those tests. That’s the thing about brain injury. Every one is different and it is a challenge to figure out what is going on. For me, it means frustration followed by more tests.
It’s crazy. You start doubting if it’s for real or are you just messed up mentally and emotionally? Maybe all three? Since my injury, I had doctors tell me it was nothing but the pain medication (while I had unequal pupils). Two neuropsychs: one stating I’m depressed and scoring low because of it; the other diagnosing ADD and slightly lower mental functioning than baseline. Right. I scored an IQ of 90. My pre injury IQ was 140. Then, there was one who thought I was malingering. Others who just had no idea what was going on.
And tests kept coming back normal. A CT scan, two MRIs, a normal EEG and an unusual EEG. But, it was inconclusive on what it meant. (I was eventually diagnosed with a seizure disorder)
So, treat the symptoms. I had so much physical, vestibular, speech therapy. And an employer who told me that I can do my job if I just tried harder. I worked my ass off in therapies, on my own, at work and felt like crap and totally exhausted all of the time. I hit the ceiling of improvement and was just trying to hold on.
I kept thinking it was just in my head and was getting more and more frustrated, angry, anxious, afraid that I just couldn’t be like I was before. I was crazy. I could be normal again if I really wanted it.
Im lucky to have a good friend who knows something about brain injury who advocated for me. I also have a great neuorologist who referred for the bemoaned testing to try to get a handle on what was happening. And a primary care doctor who knew something was wrong.
Last year, my neurologist ordered- you guessed it- tests and referred me to see a neuorologist in Spokane specializing in seizures and migraines. As part of that round of testing, I had another sleep deprived EEG, one of the two neuropsychs, and a weighted MRI. At this point, I figured nothing would show up because, with the exception of the unusual EEG, nothing ever did.
It was a twisted sort of relief that the weighted MRI showed areas of damage. It bloody is in my brain! I have brain damage! Uh, that isn’t a good thing….. But, it was something I could see. And the specialist confirmed the diagnosis of complex partial and absence seizures. Those weren’t in my head either.
This year, my neurologist found out about a program in Portland specializing in brain injury rehabilitation. Oh, fuck! Another round of testing- again. Every time one is ordered, my anxiety goes up. I still question if my symptoms are real or I’m just not trying hard enough. Or they are in my head. I really didn’t want this but was pushed into it.
the testing was brutal. It was a bit different this time. They weren’t trying to diagnose anything in a way. It was a given that there was actually a brain injury. This was about identifying problem areas to work on an what strengths I have already.
Head Pain concept
We did my staffing today. I was scared shitless. It’s frightening not knowing. Do I want to know? I was so scared they wouldn’t find anything. That would mean it’s in my head. It was a strange experience to have a group of professionals outside my neurologist recognizing the ongoing issues. There are issues. I like what they have to say. I was really worried that it would come back that all my issues were mental: depression and anxiety. They’re normal and not what is causing my issues.
Heres the stupid thing. A few years ago, I would have been all over this program. Now, I’m not sure. Why bother? I’ve already lost almost everything that I loved to do. My best effort for four years didn’t fix it. What’s going to be different now? I’ll never get thosr things back. Theyre gone. I’m finally comfortable and feeling safe in my routine and home. My cat, my ferrets…. I don’t want to feel unsafe again. I don’t like being outside my comfort zone. How do I keep myself safe surrounded by strangers away from the town I know?
not to mention: what do I do with Brigid and Kaliyah?
Nope. I just don’t really see the point. Too late.
Is it a chance for gold? Or just another fool attempt?
would I be a fool for going? Or for staying away? I’d be a fool to hope.