You’re Removing My Brain Tissue — Will I Still Be Able To….
The brain surgery was my choice. I had the opportunity to have the dodgy bit removed. I was excited — but one of my questions was: “will I still be able to play piano?”.
Isn’t it funny what a person worries about? I’m not a professional pianist, but I’d planned to start learning again after a 20year hiatus and rather than worry about if I’d be able to breathe, I worried about piano playing!
I had uncontrollable epilepsy which was worsening. The drugs weren’t working, and I was having crazy accidents. But I was one of the lucky ones who was suitable for brain surgery (most people aren’t).
Lots of people are shocked when I say this, but I wasn’t at all afraid to say ‘yes’ to the surgery. I’d spoken to my neurologist and neurosurgeon in detail about the operation and the risks of having it and of NOT having it. The latter FAR outweighed the former!
Why I had the brain surgery
Drugs weren’t working. If I had brain surgery, I was likely to:
· Have a reduction in the number of and the severity of my seizures, and;
· Have a longer, healthier, happier life
If I didn’t’ have the surgery, I would likely:
· Continue to have more frequent and more severe seizures;
· Have more accidents and injuries as a result of the seizures, and;
· Be more likely to die early
I understood my epilepsy pretty well and was bored of (as well as upset about) injuries, falling on railway lines, etc.
Ok, rather than playing the piano, my main concern was how my intellect and overall cognitive function would be affected. Because damage to either of those could badly impact my career and independence. My memory was already rubbish (no, seriously; the medications for epilepsy as well as the seizures can be a nightmare!) and the part of my brain that the surgeon would be removing played a huge part in memory function.
But then… the tissue they’d remove was damaged already, so…. And what’s the point of having a slightly better memory if your seizures are worsening, your quality of life is worsening, and you’re unlikely to live much longer anyway?!
The risk of depression post-surgery was significant — but I already had serious depression. So…meh…
I had the likelihood of a reduction in seizures and a 60% potential of no-more seizures post-surgery. That was fine with me. I had no other treatments to try!
The decision was really easy for me and made me think of Andy Dufresne’s quote: ‘Get busy living or get busy dying’ (well in my situation it was more ‘trying’ but you catch my drift).
My surgery was a success
The surgeon couldn’t remove all of my damaged brain tissue because that could have negatively impacted my sight for instance. Today I still occasionally have seizures. I still have to take medicines for my epilepsy. I did have horrific depression after surgery. But to me, my surgery was a massive success. I would do it again in a heartbeat. I have far, far fewer seizures now and I’m able to plan my life a bit more.
Empowering yourself
If you have epilepsy and uncontrolled seizures, one of the best things you can do is to learn about your illness. Not just how the seizures, the drugs, and how society impacts you, but how your brain actually works (or doesn’t work!). Learn about the psychiatric impacts of seizures and drugs. Learn that you aren’t alone (check out the Epilepsy Sparks blog for that).
Learn about why other people get nervous (I purposefully watched myself have a tonic-clonic seizure to understand people’s fright) — most of it is down to concern and/or ignorance.
I know that I’ll always have epilepsy, but I understand my condition more than most because I choose to learn about it. I choose to learn how the condition affects other people and society overall. Hey, I forget lots of the information (!) but I re-read the information and file it well so as to know where to find it!
For those with a loved one with epilepsy, I’d say that the above applies too.
Can I Play The Piano?
I can! I am studying for my grade 6 now. There are some things I’d forgotten but thank goodness for neuroplasticity and some remaining memories!
