- 7 years ago
- Wedding: May 2016
Some of you may be familiar with my story, but if not, I’ll start from the begininng. Fiance and I have been together for almost two years. We are planning on getting married in May of 2016 (although just to stop the conversation before it starts, wedding planning is on hold for the moment). Fiance began having seizures in his early 20s, about six years ago. At first, they were very intense. He was on dilantin, which seemed to make them worse (having up to 100 grand mal seizures a month). He is now on an increased dose of Keppra, and seeing marked improvement. He hasn’t had a grand mal since November, and he hasn’t even had an aura for nearly a month.
When I met him, I got him on track with an epileptologist, and we’ve been through the ringer with testing–he has had countless EEGs, MRIs, PET scans, a five day stay in the epilepsy monitoring unit, and a WADA test, where they used a cerebral angiogram to put half of his brain to sleep and perform tests, then did it to the other side–this was fairly invasive and pretty painful for him. Through all of this, he has been so incredibly brave and so, so strong. I can’t imagine waking up one day and having your entire life taken away from you–the ability to work, to drive, to be independent at all. It’s heartbreaking, and frustrating, and so overwhelming for both of us.
At our last appointment, they told him that he is a candidate for a temporal lobe resection. Essentially they would perform a craniotomy and take out the parts of his temporal lobe where the seizures are focused. The goal is for seizure freedom, and potentially the possibility of stopping all anti-epileptic drugs in the future (though none of this is guarunteed). I have been trying to keep my opinion mostly to myself because I can’t put myself in his shoes. I don’t know what it’s like to be him, and to have all of his challenges, and to be completely incapable of being independent due to his illness. He thinks he’s going to have the surgery done.
Bees, I’m scared. Actually that’s not right, I’m fucking terrified.
What if they totally screw up and he dies?
Or what if they totally screw up and he doesn’t die but he never wakes up?
Or, more likely, if something goes haywire with his memory and he can’t remember my name? Or the names of simple, normal, every day objects? The WADA test will hopefully prevent this, but again, there is no guaruntee. He keeps asking me if I’ll still be with him if he “wakes up stupid”.
My Fiance is also a very talented, very skilled artist. This surgery will more than likely cause visual spatial deficits, and he will lose the one thing that has helped him through all of this.
This is breaking my heart and terrifying me at the same time.
I don’t think I’ve gone a day since our appointment last week without crying hysterically. Actually, we both have. I want to be strong for him, but I don’t know how to do that when I’m this afraid.
Luckily, at least, he is in counseling. He has coverage through medicaid. I know I should probably be seeing a counselor as well, but we just can’t afford it right now.
He could also experience personality changes from the surgery. What if he wakes up and he’s not him anymore? Or if he doesn’t love me? I know that sounds stupid, but it’s one of the main things I’m afraid of.
His cousin suffered a traumatic brain injury a few years ago, and while she is functioning and kind of independent, I doubt she will ever be able to live on her own, and as my Fiance tells me all the time I “never got to meet the real xxxx” because she is so much different as a result of her brain injury and subsequent surgery. That is his only experience with any kind of brain surgery–and he’s scared that he will end up like her.
There’s no one that can reassure us or give us the answers, because honestly, even if the neurologist swore that these things wouldn’t happen, I’d still doubt them, just because it’s your brain, you know? It’s all wrapped up in that hard little skull for a reason. But in the same breath, if he doesn’t have the surgery, there is a good chance that sooner or later, he will become accustomed to the dosage of medication that he is on, and seizure activity deteriorates the memory centers all on its own. He has a ton of side effects from the keppra as well–sleepiness, mood swings, anger, headaches, muscle aches/spasms.
I just don’t know what the answer is.
Fiance drew this for my sister for Christmas, and I am seriously in tears thinking that he might lose his talent. That’s the most fucked up part about this. And it’s just not fucking fair. And I know life isn’t fair, but this is really goddamn ridiculous.
What would you do if this were your situation?
I don’t even really know what my point is in posting, except i want to get it out to someone besides him, and I want to encourage you all to go home to your FIs, BF, Girlfriend, DH, Destination Wedding whatever, and hug the shit out of them, and thank whatever being you believe in for their health.
Life is so freaking fragile.