There I was, a sixteen year old holding a rubber enema bag with a tube running around the corner of an elderly family member’s bathroom. I was standing in the hallway, just as grateful for her dignity and insistence for privacy as she was. As I held that bag she repeated her oft expressed adage about growing old and how much she did NOT recommend it.
Flash forward twenty-something years and I just assumed she was referring to the gray hairs that were starting to sprout out of my head and, hopefully MUCH later, an occasional need for Ex-Lax.
Until this Fall.
2016 had been a rough, intense and big year for us. I was starting the process of self-publishing my book, He-Man began his second year of a privately owned chiropractic practice, (everyone says it doesn’t get better until after Year 3) and we just refused the offer to buy our home at a cost of $50k above appraisal.
No wonder the gray hair.
But we could handle it. We found a fabulous place seven minutes from his clinic but it wouldn’t be available for several months. No biggie. Our very generous brother invited us to move into his home until our new home was ready. Good thing we are all really good friends, right? AND Sunshine would get to live with one of her dearest, most favorite cousins.
We packed up our stuff and put it into storage (more gray hairs) and made the relocation to our community’s sister city. We kept our girls in their schools and maintained our fellowship in our church congregation which is like family to us.
It ended up being a tender mercy and I feel strongly it was a blessing from God because as any new business owner knows, in the beginning, some months you’re lucky to pay overhead. Pile on a couple of months like that and things get a little scary. That’s what the Autumn months turned into for us. Had we signed a mortgage a few months before, we would have been in serious trouble…racking up major credit card debt, at the very least-just to maintain our household.
It was an ideal solution for a not-so-ideal situation. But we could handle it.
One day I was driving the new after-school commute we were growing accustomed to. The kids and I were talking and laughing, enjoying the unseasonably warm Autumn air. Suddenly, I felt panic and in an almost out-of-body experience had a memory of years before.
Only, it wasn’t a real memory.
Sunshine was about five years old. She was wearing her pink raincoat, holding an umbrella next to a freakishly large school bus…and some crazy lady with enormous glasses was reprimanding her…BUT we were all inside a Chuck-E-Cheese.
The ‘memory’ faded like a labor contraction. Then I was hit with a wave of heat generated from the core of my body.
“WHOA!” I thought. ‘I just had my first hot flash.’
Either that or I just received a vision of the tenth level of hell.
I pulled the car over, let our newly permitted 15 year-old take the wheel and sat there in stunned silence promising myself I’d schedule a hysterectomy for the next day.
After three more days of these sort of hot flashy memories, I was resigned to the idea that I was a menopausal ‘thirty’-something year old. I thought I had to be breaking some sort of record but then I realized: I’m not that young.
The next morning the first thing I remember was being on the floor. My entire body hurt and my head was throbbing. Next to me, Captain Obvious was asking me all sorts of questions.
‘What is your name?’–Um…Trishelle. Duh.
‘How old are you?’–Still 39…like yesterday.
‘Do you know where you are?’–Well, for some reason, I’m on the floor…
‘How many children do you have?’–Uhhhh…I can’t remember. That’s weird. I feel like I should know this. I counted on my fingers and then finally remembered all six.
While those were the answers going on in my head, I could barely get the words out of my mouth.
‘Trishelle, you just had a grand-mal seizure and I’m taking you to the hospital.’ stated He-Man as he pulled me up and carried me to the car.
The next few days were filled with doctors, brain scans, meals in bed, lots of visitors and a very sore body.
*By the way, if you were among those who helped us along, thank you from the bottom of my beating heart. My memory of those days is pretty jumbled. Just know I love you.
After all the consultations we were hopeful the seizure was an isolated event and it was highly likely we could just go on with our lives…so on we went as normally as possible when you’re living in temporary housing without a vast majority of your creature comforts.
I felt lucky. I would probably never have to go through this again. And why would I? I’m healthy. I exercise a lot. I eat my fruits and veggies. I brush my teeth. And floss…sometimes twice daily. That ought to count for something, right?
Maybe in the dentist’s chair but not really.
In early December, I had another one. The same day I dropped and shattered my phone. My world came crashing down and the darkness settled in. Suddenly, the normalcy of my life was gone. Everything I felt I knew about my body was unfamiliar. How could it betray me like this? I mean, I even like celery! And homemade sauerkraut..and kale! Come on!
This time, as my physical self began to recover from its self imposed marathon, my mind didn’t. My heart ached and I was little angry. Half the time I couldn’t remember important details of things I should’ve known about my friends and family and felt embarrassed when I had to ask.
When people questioned, ‘Hey! Are you okay?’ I wanted to say ‘Yeah! I’m great. Everything is wonderful!’ I wanted to use all sorts of happy, flowery adjectives to describe how fantastic our family was, like I normally do. But I couldn’t. I just didn’t have the energy and lying about it would just make me hate myself.
I cried. A lot. But I continued on autopilot, impervious to the Christmas magic swirling around me. During this time I even went through the proofs and signed off on the publisher printing my book. MY book. The dream I’ve worked for a decade to accomplish. It should have been a monumental moment. But it wasn’t. I was just numb.
Perhaps this was an over dramatic response. Anyone who knows me knows this isn’t out of the realm of reasonable. But it has weighed on my mind that the lives of two people I’ve loved dearly ended suddenly and it’s highly suspected their seizure disorders at least contributed, if not caused to their deaths.
Annette was in our circle of cheer leading friends. One glorious summer was filled with sleepovers, hours of cheer practice and at least a dozen crushes on the boys we cheered for. Her family moved shortly after. Over the years we talked on the phone a couple of times but the next time I saw her was in a casket. I didn’t even know she had epilepsy until her funeral. She was 17. As an adult I understand now why she didn’t say anything. But still.
David, the little brother of one of my longest and dearest friends, was one of the sweetest, most genuine people on the planet. He had a way of softening people like no one else could and he loved everyone. Perhaps we all knew his life would be shorter than ours but nothing prepares you for that call. It came this summer, way too soon.
They’ve been on my mind a lot lately. They still had so much to do. So do I. I have ideas for books. More importantly, I have a husband to support during a really difficult, uphill career climb. I have children. Two are very young. They are my trusty sidekicks all day, every day and we’re often by ourselves for hours on end. The possibilities frighten me.
Somewhere in the middle of this our family finally sat down and watched ‘Finding Dory’. We laughed and giggled and gloried in watching our youngest experience Marlin, Nemo and Dory for the first time. There was something about Dory that struck me like never before in the one million times I’ve watched ‘Finding Nemo’.
At first I laughed at how much I could relate to her short term memory loss. It really is kinda funny. But I also noticed her determination to be persistently perky wasn’t because of a lack of intelligence. On the contrary. It was a conscious choice she made. It gave her the power to overcome her seemingly insurmountable obstacles…even if she forgot some of the details later.
DING! DING! DING!
Learning a life lesson from a cartoon character doesn’t make it any less true.
Shortly after, I was wrapping Christmas presents for my family. One moment I was fine, enjoying the pretty paper. The next moment, I had forgotten what I was wrapping and for whom. Then it happened. I realized how dang funny it was. And I laughed. A lot.
That laughter carried over and helped me wake up. It felt really good.
Days later He-Man and I were talking about everything when he mentioned, “Honey? No offense, but seizures are REALLY not attractive. There’s snorting, gurgling–and some drooling. Luckily, so far there hasn’t been any incontinence but there often is. And, well, the morning of your first seizure, I woke up because you smacked me in the face. Hard.”
That was it. Stitch-ripping, side-splitting, gut-busting laughter. There were tears, an apology and lots of kisses to his ever-lovin’ cheeks. Suddenly I noticed the weariness on my sweet husband’s face and realized how hard this has been on him too. He hasn’t complained. In fact, when we’ve been at the doctors’ or at the hospital, he’s been fairly quiet.
I should have remembered what that usually means. He’s scared too. The morning of my first seizure, he thought I was having a stroke. He’s had to go through those ‘What-If?’ conversations in his own head and has kept them to himself because he’s known I wouldn’t be able to handle them.
The point is, I’m not alone. Not even close.
Maybe Dory is on to something here. I can’t promise everything is going to be rosy. In fact, I know it won’t be. We’ve got a long road ahead of us. Ironic, since I’ve just been grounded from driving for a minimum of 3 months. (Considering I drive past at least 5 elementary, middle and high schools and the possible alternative is unthinkable, this is appropriate.)
We have a chance to make the most of this situation. Maybe this is an opportunity to do our part to help remove the shroud of mystery/shame/embarrassment around seizure disorders. Maybe since I’m stuck at home all day, without my stuff and all the ways I’d busy myself in my own little nest, I can finally finish the historical fiction I’ve been threatening the world with.
(Speaking of which…Did you know that Daniel McGinnis was the original Goonie? He makes an appearance in my book that One Eyed Willy would be proud of. I think I’m going to ‘perfect’ a few chapters and share them on here for anyone interested in helping me fine-tune them…)
The reality is I may or may not have Epilepsy. It may be age related (i.e. hormonal) That feels really weird to type. One seizure is a fluke of sorts. Two seizures is suspect. Three is a pattern. I’m in between a fluke and a pattern. In the meantime, I’m grounded and I’ve determined that it’s not all bad.
If you’re even remotely interested, stick around for the next few homebound months. I’ll do my best to entertain and enlighten anyone who’s curious about this sort of thing.
Once again, thank you to everyone who has supported us for the past several months. The prayers, the well wishes, the hours of service and quiet acts of kindness have all been felt and appreciated. We love you all to the moon and back.