This week was a tough one, and this blog is going to be even harder to write. I recently have been told for the second time in my short life of 25 years the words, “no cure”. Recently my tremors and myoclonic jerking have been getting worse and worse. To the point where sometimes holding my head still is difficult. It felt different this time because I realized that I had to switch from a normal glass to a cup with a lid and straw because my tremor was making it difficult to not spill all over myself. I have all but given up writing by hand, unless I am having a good day. And eating, not a fun experience sometimes.
I know, It didn’t seem normal to me either. I asked my neurologist about this, and did another wonderful exam.
Touch my finger, touch your nose, repeat (failed), follow my fingers, repeat, run one foot over your opposite leg, repeat, resist my pushing, arms out, arms in, etc…
My tremor was ever so prevalent during this entire exam. I couldn’t make the mark of touching his finger after touching my nose. This has never happened to me. I would fail a drunk test.
Essential tremor. That’s what I have now, not just epilepsy with myoclonus. Essential tremor.
He told me this as soon as we sat down in his office after the exam, and went right in on telling me that there is no cure, but I have “options.” Now, it didn’t scare me at first because I’ve been down this road before with epilepsy and came to terms with it. There were also things I’ve been doing to improve my condition and have less seizures. But, this time there isn’t anything I can do to stop the onset of the symptoms from getting worse aside from take some beta blockers and “cross my fingers and hope for the best” — those were his words as I left that office this week. I’m getting a headache just thinking about it.
Of course, I did a little research and found that in the end, this won’t shorten my life or mess with my memory or cognitive abilities (whew!). But, I will get worse, that is a fact. It has already gotten worse. I will also need to get a heavy-duty case for my phone, lock it down. And the Hail Mary fix for this when it gets to the point where it starts ruining my life is brain surgery. Deep brain stimulation. To me, that means, “You’re genuinely f*cked this time, Kate.” Not only would I be undergoing brain surgery, but it would involve being awake during it, and an implant being placed in my brain and controlled by a battery through a wire under my skin.
I don’t know when this will happen, everyone is different; it could be 20 years from now (but how bad will it be at then?). At this point, I haven’t even been worried about seizure triggers or anything else for that matter. I didn’t get any homework done this week, I didn’t even try. That’s not like me at all. I usually get things done, and make sure it’s done to the best of my abilities. No cure, and it gets worse. So I’m also going to cross my fingers and hope that this drug works. Even though, statistically, I may at most gain back 50-60% of control if it works for me. If it works. Am I going to have to start over again? Will this make me withdraw from school again? Will I lose my independence?
This is fucked up — that’s what “no cure” means to me. It also means I have some more hurdles ahead (physical and mental). It took me months to embrace my epilepsy, so how long will take for me accept this essential tremor? I will take that in a plastic cup, please and thank you.