When I talk about my condition, which is not rare, but rarely known, I get a lot blank stares. When I explain that Chiari Malformation invariably includes invasive brain surgery as the standard treatment, and that it often includes more than one, I get a lot of uncomfortable glances at the ground. I know this look well; it’s the look of: I have questions that I’m too embarrassed to ask. The most common embarrassing question (for them) is: do you have brain damage?
The short answer to this question is: Yes. Before I explain why I do, and what it is, let’s review what someone did to my brain less than a year ago. My brilliant neurosurgeon, and I’m not being snotty, sliced open my head, and cut a large hole in my skull to relieve the pressure off my swelling brain. This allowed the part of my brain that was squishing out of my underdeveloped skull, to slide back inside the skull, where it belongs. To keep things where they belong, he sliced a part of my dura, from a higher spot, and patched the hole in my skull with it, leaving me with a giant soft spot, like a nearly forty-year-old baby.
When people are afraid to ask if I’m brain damaged, it’s the least of my concerns. I’m too busy worrying about my next brain surgery (soon). Or I’m concerned the limp I’ve developed is part of the array of permanent symptoms, or it’s because I’ve been immobile too long. I don’t care about your discomfort around me. I’m not ashamed of my condition because it happened to me; I didn’t do it. In fact, I’m happy to share because it spreads awareness about something horrible that very few people know about.
So yes, I have brain damage. Brain surgery is considered a traumatic brain injury (TBI), the healing time for which is measured in years, not months. And, this leaves behind permanent problems for nearly every TBI patient. For me, my problems include anxiety and panic, reading and writing problems, and memory issues.
Anxiety and panic is not uncommon with TBI. My triggers are sometimes unknown; but for the most part, I am triggered by medical procedures. I get panicked by meeting new doctors. And, if you show me an image of a patient bolted to a table, face down for my procedure, you will see a panic attack.
I have difficulty spelling, both in typing and handwriting, horribly distressing for a former English professor. I leave off the beginnings and ends of words, and I misspell almost everything. I used to curse autocorrect, now I don’t know how I’d live without it. Autocorrect fails have become my life; thankfully I’ve learned to proofread before sending words like: boobs (boots), boobs (books), boobs (boon). Why does my phone think I like boobs?
My memory is severely affected. We moved over six months ago and I don’t know my address. Under any stress, even those that would not stress any “normal” individual, my memory is far worse. For example, if I’m in a new environment, my memory is gone. I carry a notebook with me, with all pertinent information, as I won’t remember any of it, and the more anxious I get, when questioned, the worse it gets.
I recently tried to take an art class. The combination of being excited about the course, plus being in a new store for supplies was a recipe for memory issues. The clerk asked me what class I was taking; I couldn’t remember. Then, she asked me what school I was going to; I couldn’t remember. She asked me who my teacher was; I couldn’t remember, but now I was sweating. She asked me where I lived, because I thought I could just end the conversation by pretending I’d just moved, and that excused my silly delirium; but I couldn’t remember, and now I was shaking.
Finally, I confessed that I was a brain surgery patient; she immediately understood, and I relaxed. That’s my permanent practice now; I carry my notebook, I pull it out and answer questions from it. When clerks look at me like I’m weird, I tell them why I’m referring to a notebook. People are exceptionally understanding when they know someone has jabbed at your brain.
Embarrassment shouldn’t stop you from wanting to know about someone, especially a friend’s condition. You may be able to help them in ways you might not even understand. You might be able to come to the store with me. You might be able to hold my hand at a doctor’s appointment. You might be able to just listen. Ask and you shall receive.