It might sound like a strange thought, but it’s the one I had while I was waking up today: I wish I weren’t so interesting. Some of the qualities that make me interesting I don’t mind so much. I even appreciate them. For example, I like being left handed; it makes me different than others. I’m creative. I “think outside the box.” I like that.
I’m a decent singer, too. I like to sing. When I was in high school, I sang in choir all four years. I was never good enough to be in a full-on band, though, especially because I can’t stay up late. I get sleepy by 9:00 or 10:00 o’clock, and the moment my head hits the pillow, I’m out. If I were in a band, the only music I could do would be afternoon shows for a senior center. That might be a nice thing to do, or would have been, if it weren’t Covid times. Plus, now that I’m 51, I’m less likely to sing at a senior center than live there.
However, other things about who I am, while also interesting, make my life harder. They make others‘ lives harder. I have epilepsy. I’ve seen my brain scans. They’re interesting, too. However, looking at my scan, and seeing holes where my brain tissue should be? Not so great. Sure, it’s fascinating, but it’s also depressing.
I used to be smarter. I’m still smart, but I’m also smart enough to know that my now-ordinary smarter is not as smart as my once smart-smart was. It’s sad. Epilepsy, at least for me, means that I can’t drive, either. Not only does that suck for me, it sucks for my husband, too. It’s a good thing that he’s patient, kind, and willing. It sucks that he has to be an uber driver at this point in his life, especially because he hates driving. I hate that I can’t drive, too…at least for now. I might be able to get my license back, because I’ve hit my one-year mark for not having any seizures. DMV says you can get your license after six months seizure free if you are under the care of doctors. To be honest, I don’t think that’s long enough. It should be a year, at least. Don’t tell DMV I said that, okay?
I wish my epilepsy were the only medical thing that makes me interesting. Sadly, it’s not. I also have a disease called ITP, which is short for “immune-thrombocytopenia.” ITP is easier to pronounce, and it sounds almost perky, a little jolly. Spoiler alert: it’s not perky. It’s not jolly. ITP destroys your platelets. Platelets are what clot your blood to the appropriate levels so that you don’t bleed to death. That would not be good. We don’t want that; nobody wants to bleed to death, right? ITP is unusual and rare. It’s also dangerous. Even though ITP is rare, it is often found in families, and, unfortunately, my Mom also has it. I’ve watched her go to the hospital more than once when she didn’t have enough platelets, which meant she was at risk for bleeding out. If your platelets get too low, you can, you know, die. That would not be good, either.
They do have MSG.
If ITP is not interesting enough, how about APS? APS is short for “anti-phospholipid syndrome.” Even though most of us know what lipids are, I still don’t fully understand how they relate to phospho, whatever that is. I’ve never seen phospho listed on a junk food ingredient list! Phosphos are not even in Funyuns, and that is a snack with almost everything in it, even MSG. No phospho, though. I have APS, too, in case I didn’t make that clear enough.
Even though APS sounds less dangerous than ITP, it’s not. It causes clots. When clots go to your heart, that’s a heart attack. If they go to your brain, that’s a stroke. I haven’t had one of those, which is good. I did have a mini-stroke once, when I was 24 years old. What I called a “mini-stroke” is technically called a TIA. Now, that’s terrifying! It was really weird. I got dizzy, then couldn’t talk properly. My words were all jumbled and out of order. Worse than that, I could hear that they were. I could understand that they were; I just couldn’t do anything about it. At the time, I thought I was dying so I wrote a little note:
“This something is easy to where use language who wants to explain this.(??) My mom had something weird like my mom cause once-something like embolism/stroke/but something nothing easy to use equal or that make sense”
Feisty Quill, 1995
The TIA made me sensitive to stroke victims, who might be listening to people and wanting to communicate, but just aren’t able to do so. That’s terrible. If you had a blog, you wouldn’t be able to do anything that day, that’s for sure, because, well, your words wouldn’t make sense. After the shitty TIA, I had the worst headache I’ve ever had in my life. Eventually I could speak again, and the headache went away. Then I didn’t even go to the doctor…because I’m an idiot. No, seriously, I didn’t go to the doctor, because I was out of state and I wasn’t sure my crappy insurance would pay for an out of state doctor. Once I got back home, I went to a doctor and he told me I should take an aspirin every day. I’m not kidding.
If you are paying attention, you might have noticed that ITP can make you clot. Not having enough platelets can make you bleed. Yep, the two are sort of opposites. Shouldn’t that make them balance out? You’d think so, wouldn’t you, but nope. The two opposite things don’t work like that, and you still (I still) have to treat both. Otherwise, I could have a bleeding-out-clotted-stroke. It doesn’t even make sense, but that’s the way the cookie crumbles, unfortunately.
In my lifetime, I’ve had to see a LOT of doctors. I’ve seen (and I do see) a rheumatologist, a hematologist, and a neurologist. As you can imagine, I go to plenty of blood labs, too, but labologist isn’t a word, so I’ll leave it out. You get the idea. It takes a village.
To sum up, I have epilepsy, ITP, APS, and I’ve had a TIA. Even eating alphabet soup won’t beat those fuckers. It sure seems like it should, though. So, take two aspirin and call me in the morning? Like I told you, I wish I wouldn’t be so interesting.
