Nope, We Don't Celebrate It!

This week is my fourth year since my first tonic-clonic seizure--my Seizureaversary, if you will. I made it! I'm here! 

Knock on wood, I'll be tonic clonic free for four years in July. 

I still have little ones here and there (okay, here, here, here, and there, and here again, lately), but the important fact?

I'M. STILL. HERE. 

Not always upright, lucid or part of the conversation, but I'm still here! 

Here's the thing, though--we don't celebrate any of this. It's one of those things, we kind of just really don't dare. We don't mark anything on the calendar, we just let the dates pass quietly. No streamers, no signs, no cake (I love cake and will use any excuse to have it, so this part is a big deal), no celebratory posts on social media, just a quick, quiet mention.

We don't believe in superstition, but admittedly, Avery and I have never repeated the same routine from the morning of my traffic stopping seizure. I still don't pull out of that stop sign, four years later. I go the long way around to the stop light. I don't sip my Starbucks until we're safely through the light. We don't repeat those four errands from that morning--and if we did, it certainly would not be in the same order. I know that Avery will never forget that day, and I, well, I'll never remember it. 

Sooooo no, we're not big into coincidences or jinxes, hoo doo or bad luck--but we're also not going to tempt fate, you know? 

We all know this epilepsy thing is a time bomb in my brain. 

And I hate it.

It's just there, hanging out, waiting to spring.

SURPRISE!!!

GOTCHA!

I'M BAAAAACCCCKKKK!

It could be tomorrow. Or next week. Or next month. Next year. Five years from now. If we're lucky--never again.

It's not just the seizures. It's the toll it takes on my brain and body, even when I'm not having seizures. My memory is a joke, I'm constantly tired, my depression and anxiety deepened. There are things I can't do--don't dare do--anymore (I really miss concerts), and independence I'll never regain. There are fears my kids may never grow out of. Whenever my body and brain veer off course, we wonder if it's another form of seizure (the answer is most likely yes). It's terrifying for my family when only half of my body comes back, and slowly. Is this a seizure or something scarier this time?

My brain does not care how many years I have in between seizures, or how well I'm doing on my meds, or how long I've been steady on these meds. 

My brain does not care that rather than being the emergency contact for my family--I am the emergency. As Mom and wife, I'm supposed to be taking care of them, not the other way around. My brain does not care that when Shawn goes out of town, we need several emergency plans in place, depending on how, when and where a seizure happens, how long it lasts, and whether or not it reacts to my rescue meds. We have phone trees in place, Plans A, B, C and well, Z. Because--epilepsy. Because--me. It does not care that, as the adult, I should be the one in charge--not my 16 and 10 year old sons. My brain does not care what epilepsy has robbed our family of (like celebratory cake)--movies, TV, concerts, night-driving, even driving on a beautiful sunny day with the sunlight flashing between trees. "Mom, close your eyes," I hear from the back seat. We've carefully explained to our youngest that I do not have photosensitive epilepsy, but I cannot remove that fear from his own brain. I also cannot promise him I won't eventually develop it, and the only way to know is if I have a reactive seizure. My brain does not care when I can't sleep (because of well, my brain), and we miss out on an activity because, "Mom needs sleep." There are things I want to do, things I want to be able to do with my kids--but I have to watch my energy levels, I have to be careful about driving, I have to make sure of this, and be sure of that. My brain does not care.

We use a lot of dark humor to diffuse our stress, anxiety and trauma:

Put a YooHoo in Mom's hand next time.

Do you think Home Depot would give us a discount if Mom shakes the paint can instead?

Who's the current president? Uhhhh, Obama's vice president. (that answer to EMS is a family favorite)

Do you know what today is? Yes! It's today! (another favorite)

What's Mom's favorite song? Shake, rattle and roll!

That sounds like a lot of whining and complaining, but as a family, we try our best to not live in fear. After all, what kind of living is that?  But I know Avery has buried himself in research. He knows what could happen if a seizure goes past 5 minutes. He knows what could happen if my rescue meds don't work. He knows about SUDEP. He knows all the response steps for seizure first aid, including instructions for bystanders. I carry a laminated card in my purse warning well meaning bystanders off because he knows what he's doing. He's in charge until the seizure is over, or EMS arrives. Ezra knows how to hack my phone, and we quiz him regularly on the various steps and plans. In Avery's absence, my 10 year old would be in charge. This is no life for my children, but my hope is it will make them more compassionate and kind adults. Shawn took a WFH job to be home just in case. That's kind of how we operate: Just in case. Nearly everything I do, especially alone with the kids, I wonder if I should actually be doing it. Is it safe? Am I safe? Are my kids safe with me? We try so hard to not live in fear, but we are human. And this is our reality.

But still...

In the words of one of my best friends, who quoted Elton John at the time: "I'm still standing." 

Yeah, but we still don't celebrate. 

No cake here.