...You Give Her Epilepsy
The last two years and eight months has tested my ability of being able to accept help. Even after being assaulted, having to hide and move, and rebuild my life with my little boy, I still had an incredibly hard time accepting help. Perhaps you could call me stubborn. I wouldn’t tell you you’re wrong.
How could such a person be forced to accept help from others, you ask? Strip their independence. How to do that? Give her Epilepsy.
As a single woman who lives alone 50% of the time, and with her six-year-old son the other 50% of the time, this comes as quite the curveball in this game of life.
June 28 was the first day I didn’t feel right. I felt woozy and lightheaded – like I was walking on a boat. I’d been monitoring high blood pressure (140-150’s over 100-105) for a couple of months. The combination of high blood pressure plus my lack of balance had me concerned enough to talk to my mom about it. (How childish, right? Fine. But I had no one else.) “Mom, I just want someone to know I don’t feel right. That’s all.” – Because it’s not something I could tell the person that I actually live with… my six-year-old.
Thursday, July 1 was another day I became unsteady on my feet late morning. It felt like I had an abundance of CO2 buildup in my body, like I was hyperventilating and lightheaded. I met with my amazing SANE nurse over lunch to chat and went back to work as usual, pretending to be perfectly capable of walking down the hallway without running into walls, which was not the case. I tried my hardest to act like I was fine.
It became out of my control though when my coworker came into my workroom and tapped me on the shoulder to ask me a question. I turned to look at him over my right shoulder and blacked out. I even remember what I saw. It was like I was an old 1970’s box TV shutting off, blackening from the outside in. I remember nothing from that moment until I was being wheeled away on a stretcher by Mayo Ambulance probably fifteen or so minutes later. Again, blacking out left me without the ability to pretend I was fine… very hard for a stubborn human.
Here’s what I learned from my co-workers as to what happened (they can correct me if I missed something): My co-worker asked me a question, I tried to answer but was slurring and not making sense. I stared blankly before losing consciousness and falling. He caught me and lowered me to the ground where I convulsed for 60-90 seconds. Thankfully I had three co-workers in my workroom who were former inpatient nurses. They knew what to do. I couldn’t have been in a better place surrounded by more brilliant people.
My lips turned blue, I bit my tongue, and I was unresponsive for two to five minutes. A resident that was working nearby called 911. When I did become responsive, I was answering questions but not making sense. I was confused and disoriented.
“How old are you?”
*insert blank stare here*
I supposedly went into work-mode when Mayo EMT arrived. “Oh great, you’re here!” Such a ME thing to do. Anyway, I was put on the stretcher, strapped in, and regained some awareness as I was being wheeled away from my workroom. I waved to my dear friend, Cara; she was the first face I remember seeing when my TV-like-brain turned back on.
My best friend and boss, Jenny rode with me in the ambulance to the ER where they ruled out concerning causes for the seizure. No brain tumor. Thank God. My son’s dad was able to pick him up from daycare. Jenny stayed with me in the ER, and my mom arrived shortly after we got there.
There wasn’t much they could do other than run bloodwork and perform a few tests. “We’re going to set you up to follow up with neurology. For the time being, we recommend that you don’t drive.”
*cue the frustration!*
“But you don’t understand. I live alone. I have a son. How do I get him to daycare? How do I get to work? How…” It didn’t matter. None of that mattered. None of the inconveniences it would cause for me mattered. If I drove and had another seizure, I could seriously hurt someone. If I rode my motorcycle and had another seizure, I’d basically be a goner.
I was in a situation where I couldn’t pretend to be fine. All I could do was accept it. After I was assaulted in 2018, I did a decent job at hiding any physical ailments I had because of the trauma. From most people anyway. But this, having a seizure, I could not hide. Being told I could not drive… I had to comply.
When I got to see my son again, I taught him how to call 911. “Okay, show me how you’d call 911 if mommy gets dizzy and falls down.” He showed me. We practiced a couple different ways that he could call. But then he asked me a question,
“But Mommy, what if you fall down and I’m not here to call 911?”
*cue the heartache*
Valid question, my child.
Let’s talk about some more fun complexities:
I have a confidential address. This means I cannot order groceries to be delivered to my home. I cannot order Amazon to my home (thank you parentals for allowing me to send things to your house). I cannot order pizza. I cannot order an Uber to my house.
No, Regis! That is not the final answer!
I can walk to a nearby establishment and order an Uber from there if I need to. My incredible family and co-workers are not letting me fail. They are not allowing me to crawl into the cave I want to hide in. They are supportive, understanding, and offering rides as needed… how do I deserve such an amazing support system? What do I have to offer in return?
Don’t get me wrong, I’m still really great at trying to get out of accepting help. A lot of that is because I am introvert. Apparently it is harder for me to accept help than to be stuck at home living off whatever groceries the nearest gas station can provide me. …You’re raising your eyebrows at me. I can feel it.
As it turns out, having a seizure is trauma on the brain and it needs to recover after such an event. For me, it has been hard to put my thoughts into words. I stutter. I am expected to go 100 miles an hour as I normally do, when I can only keep up at 50 miles an hour. This is extremely challenging because a) I feel inadequate and b) I can’t just pretend to be fine. I physically, mentally can. not. keep. up. My go-to phrase in these moments when attempting to talk is, “Words are hard.”
My body was tired like I had run a marathon, but I had sustained no injuries. My tongue was sore because I bit the hell out of it, but it was still attached. My lips were blue because I stopped breathing, but my lovelies around me put oxygen on me and I came back. And most seizures are self-limiting.
One of my episodes of slurring and confusion may have been a focal seizure, as described by the neurologist, and I’ve had another since. It seems I get into these spells where I get confused, slur, and find myself off-balance to the point where I need to remain sitting. I’m the slow-motion image in a world that’s running as usual.
Interestingly, 99% of people that have talked to me about this have said or asked, “Do you think it is from stress?” Hm, it’s like they’re trying to tell me something. (I love you all.)
• • •
So, how do you test the dedication of an advocate? You compromise her ability to speak. You give her Epilepsy. You compromise the left side of her brain, the speech side of the brain – this is where the EEG showed abnormalities. You make it hard for her to put thoughts into words. You make words hard. Throw in a little confusion... and BAM! The perfect test.
Ah, but she will prevail.
Take away the truck that makes her feel big, bad, and tough. Take away her motorcycle that makes her feel big, bad, tough, and provides wind therapy that she’s been waiting months and months to experience. Take away her ability to take baths alone, which… haha, is always (a fault of her own). Take away the ability to drive her son to daycare and Flapdoodles. (No driving until she's seizure-free for three months).
Take away her sharp understanding and her quick decision making. Her ability to efficiently juggle four tasks at one time. And as you speak, she looks at you, watches you talk, and tries to process as quickly as you're speaking. She smiles, seemingly understanding as her wheels are spinning, trying to keep up with the race. But she does not win the race. She lost. She is lost.
But! Despite the curve balls life continues to throw at her, she remains thankful to still have a life that allows her to swing her black, sparkly bat to knock those curveballs out of the park. She then walks over to her six-year-old lion cub who is watching from the dugout and hands over the bat so he can follow in her footsteps. “Okay, my cub. Aim for the stars.”
This life adjustment will take time,
but she will prevail.
P.S. Amazon is still broken. Paperbacks are still unable to be ordered, but eBooks are. I was able to order author copies of my book, so I will be receiving paperbacks next week in the mail. I'm selling these as signed copies. You can fill out this form below to order a signed copy. I'll post as soon as I see that Amazon has fixed the issue.