Two years ago.
Two years ago I scared the hell out of my husband and kids.
Two years ago my life was altered in a way that is still difficult to explain to others because on the outside I still look like me.
Two years ago, the morning after Thanksgiving, I suffered a massive tonic-clonic seizure, what we used to call a grand mal seizure…the Thanksgiving seizure!
I shook and trembled and twitched. I fell and rolled and curled in. I stopped breathing. And then I just stopped altogether and I slept and I slept and I slept and I slept while my family hovered, unsure if I would ever wake.
I did wake. I awoke feeling disoriented, surrounded by strangers. My clothes were wet. I could taste blood in my mouth.
“What happened?” I managed to ask.
That would become a regular question over the weeks and months that followed because seizures steal from their victims. And a seizure like the one I had, the kind that lasts longer than it should, steals a great many things. It steals time. It steals memories. It steals peace of mind. It steals simple skills. It steals independence. It steals plans. It steals balance. It steals things you didn’t even know could be stolen.
What happened? Why? Will it happen again?
All those years of doctors dismissing my “episodes”— those moments where I zoned out or disappeared inside my head or enjoyed some involuntary meditation–caught up with me. What the doctors had written off as nothing, as over-reacting, as hormones, or as stress were, in fact, focal (partial) seizures. Seizures! Fucking seizures!
It is so very obvious now, my symptoms were classic, but no doctor ever picked it up. Left untreated a seizure condition such as mine can lead to a profoundly life altering seizure episode. And it did.
Two years later I still feel the effects, both the tangible ones and the emotional ones. I am changed because now I know I have a “fuzzy spot” on my temporal lobe. That’s what the doctors have decided. Three specialists, two separate hour-long MRIs, and various other brain scans and what I have is a “fuzzy spot”? Fuzzy spot my ass! Two years ago it kicked my ass and two years later it still has the upper hand. There was and is nothing warm and “fuzzy” about it.
But it’s two years later.
I’m not having seizures any more, not even the little ones, but I still live in fear of them. Having a headache or feeling a little dizzy may be nothing at all but I have to treat headaches and dizziness like they are something. Just in case. I live a life of just in case. And at Thanksgiving I am especially on my guard.
There is no cure for epilepsy, just seizure abatement drugs that may or may not work depending on the day. And menopause promises a new roller-coaster ride of finding the right dosage. Yay! I once asked my doctors to explain to me how the drugs worked. Give me the science, the facts! They looked at me with a blank stare and said “We don’t know.” It was almost funny. Almost. The brain is just far too complicated and treating brain injuries and defects is really more like throwing darts in the dark and hoping for a bullseye than strategic attacks. You can’t remove the “fuzzy spot” on a temporal lobe like you might be able to do for a tumor. My best hope for a seizure free life is staying attuned to my body and maintaining a rigid adherence to timetables. I have become a slave to my pillbox app on my phone, as friends can attest, just to keep the drug levels in my body constant. It’s a pain but as sacrifices go I’m lucky. I’m still here.
Like so many who come out the other side of something traumatic or dramatic I remain all at once angry and sad and overwhelmed and hopeful. Each day without a seizure is another day without a seizure. That is the best I can expect and it has to be enough.
Two years ago I was one person and now I have been shaken (not stirred) slightly askew, but in a good way.
I am braver.
I let go without regret.
I giggle every time someone says ‘temporal distortion’ on Star Trek.
I care a little less about being liked than I do about being honest
I fail in public a bit more because I try more things.
I make decisions faster and with bolder strokes because I don’t want to waste time on an ambiguous life.
I’m still here, two years later.