My Big Three – The Seizures That Led to My Epilepsy Diagnosis
For reasons I can’t determine, the number three has an almost mystical power in our culture. It’s huge in religion – from Abraham, Isaac, and Jacob to the Father, the Son, and the Holy Spirit. It’s big in song titles and lyrics – Three Times A Lady by The Commodores, Three Card Trick by The Clash, Gimme Three Steps by Lynyrd Skynyrd, and The Three Little Birds by Bob Marley. Children’s tales can’t get enough of the number – The Three Little Pigs, Goldilocks and the Three Bears, Three Billy Goats Gruff, Three Little Kittens, and Three Blind Mice. There are a multitude of expressions centered around the number, including “Three times the charm,” “Three sheets to the winds,” “Three-ring circus,” and “Three strikes and you’re out,” Three is also famous for small groups, like The Three Stooges, The Three Wise Monkeys (hear no evil, see no evil, speak no evil), The Three Musketeers, and The Three R’s (Reading, ‘Riting, and ‘Rithmatic). With these “Trios” above, I’ve certainly only scratched the surface.
Though if I’m asked what trilogy comes first to my mind, the answer is easy. It’s also highly personal; almost visceral. It’s my first three seizures – the seizures that led to my epilepsy diagnosis – and, consequently, my life being irrevocably changed both for the worse and the better (which I’ll write more about in future essays).
So, now I’d like to tell you three stories*: My Seizure Stories. I think of them independently because so much time passed between each one that, until my diagnosis, I didn’t even think they were related; just odd.
*Because I don’t remember them, parts of the following stories are based on what was told to me by family and friends who witnessed my seizures.
Story 1: An Unforgettable Thanksgiving
November 2013
Boston, MA
My 19-year-old daughter, Marla (not her real name), and I were in Boston for two reasons that Thanksgiving –#1 to celebrate the holiday with extended family, and #2 to bring home her twin, Genie (again, not her real name), from Berklee College of Music because the eating disorder she’d been struggling with throughout her senior year of high school had, again, become concerning. Genie had missed months of her last year at Denver School of the Arts because of ED (Eating Disorder). It seemed to be under control when we dropped her off at Berklee in August, but now it was once again threatening her health. My husband was traveling on business and didn’t accompany us on this expedition.
Angie (not her real name), my niece, was driving Marla and me to the mall. I was sitting next to Angie in the front and Marla was behind me in the back. We were on the highway listening to music and chatting about the girls’ freshman year of college thus far. Suddenly, my back arched, my eyes rolled up, my body stiffened, and I began to shake. I also bit down hard on the inside of my cheek and lost bladder control. Angie freaked out but Marla, having taken advanced first aid training because at the time she was considering becoming an EMT, realized I was having a seizure. She told Angie to pull over, which she did in an illegal area. A police car spotted this and pulled in behind us. The police called an ambulance on our behalf, and it arrived minutes later. The EMTs strapped me in, hooked me up to an IV for fluids, pasted on a heart monitor, and zoomed off to the hospital. Marla rode along. This is where I “woke up,” confused and soggy, with Marla holding my hand. About four minutes had passed. We spent another four hours in the hospital’s Emergency Department, two minutes of which were with a doctor, before I was released.
Story 2: A Watery Rescue
July 2014
Denver, CO
I was spending a beautiful Colorado day with one of my closest friends at the local pool. The skies were a brilliant blue and the temperature around 75, so it wasn’t blisteringly hot. I was splashing in the pool near the edge, and my friend, Rachel (not her real name) was relaxing on a towel nearby where we’d set out our things a couple hours earlier. We were gossiping, discussing the latest movies released, and determining who at the pool best fit into their bikinis (and who didn’t). Mid-sentence, my hands slipped from the pool edge, and I began to shake – somehow still remaining on my feet in the 4ft. of water.
Rachel called my name several times, each time with growing panic. She jumped into the water and slipped her arms under mine, determined to keep me above water, and called out for help. Believe it or not, the teenage lifeguard earned his minimum wage that day. He jumped down from his perch, ran to the pool edge, jumped in, took me – still shaking – in his arms, and set me poolside. He then climbed out and moved me to our towels from where he called an ambulance.
By the time he hung up, I was post-ictal, sitting up, scared, confused, bleeding on the inside of my mouth, and shivering. Rachel wrapped her towel around me saying, “Susie, I think you had a seizure. The lifeguard called an ambulance. It’ll be here any minute.” By now, even though I felt like crap, my head was coming back to me. “No,” I said. “I don’t want an ambulance. I just want to go home.” But, by then the EMTs had pulled up, and the lifeguard was walking them in my direction. I started to cry. They pulled out a blood pressure cuff. I told them I preferred to go home. They lifted me onto the gurney and buckled the straps. So, off we went to the hospital – my sopping wet hair soaking the gurney’s pillow, my damp suit clinging to my body, goosebumps forming all over and, once again, that other stickiness and scent “down there” that indicated I had peed; this time (how embarrassing) in the pool.
Rachel gathered up our things and followed us to the hospital, but not before promising to call Doug, my husband, to meet us there. At the hospital, I was transferred from the ambulance’s gurney onto one of the hospital’s, set up in a hallway off of the Emergency Department with a dry blanket and the appropriate paperwork, and waited. I tried to fill it out but didn’t get very far because I didn’t have my wallet with me which contained my ID, as well as my insurance information. Rachel had picked me up and I had stuck $10 in my pocket, leaving my wallet behind.
Ten minutes later, Doug strode in carrying my stuff from the pool. He found me quickly, grabbed the paperwork from by hands, draped a sweatshirt over my shoulders, kissed my hand, and said, “I’ll be right back.” He marched to the admin’s desk, handed over our insurance card, and demanded I receive a room. To this day I find it astonishing the power a little firm assertion comes with. Within five minutes I was wheeled into a private, curtained-off ED examining room to continue my wait. There was even a chair in there so Doug could sit close by. This time, after I was settled, I received a proper – if brief – kiss on the lips from him. I must have fallen asleep, because about three hours later I awoke to Doug speaking quietly with the on-duty doctor at the foot of my gurney. The doctor’s hand was on Doug’s shoulder as he said, “We believe she had a seizure, but the only thing that can positively confirm that would be an EEG and/or MRI. And both those procedures require that there be visible changes to the brain waves and/or brain itself. If this is only her first or second seizure, there might not be any physical evidence. I recommend you make an appointment with her GP to decide what, if any, steps to take next. You can check out at the reception desk.” With that, the doctor, who never even introduced himself to me, departed. Doug and I left, the sweat jacket zipped on my upper body and a towel wrapped around my lower. We went straight home, had a late pizza dinner, and an early bedtime. I slept like a rock. We didn’t make another doctor’s appointment, and gradually the memory of that lousy summer day faded.
Story 3: My Favorite Ski Jacket
Vail Mountain, CO
December 2013
I’m a decent skier – probably an Advanced Intermediate or Beginner Expert. Then, I was a solid
Intermediate – blue (and green if tired) groomed slopes only. No moguls. Doug and I were skiing at Vail with a larger group for a fund-raising event. The group was divided by skill level into smaller groups and since Doug is about as Expert as an amateur skier can be, we were separated. I was wearing my favorite jacket – fitted cobalt blue with silver, white, and black trim. I thought I looked pretty good in it. From the mountain’s base, off we went with our groups toward different lifts and different levels of terrain. Of course, in the past I’d seen skiers being taken down the slope in red sleds being pulled by the mountain’s version of EMTs before. And of course, I always smugly thought, “Never!” Well, never say (or think) never because you just never know. Note: As I write this, there’s a great deal I don’t recall, and because no one I know was with me at the time, I don’t have anybody to check with for facts. I do know that I went up the mountain in a chairlift and started down it in the usual way. The next thing I can say with certainty is that Doug found me lying on a stretcher in Vail Mountain’s medical facility, hooked up to a heart monitor and an IV line. Apparently I’d had a tonic-clonic seizure on the hill and collapsed (once again chomping down on the inside of my cheek and peeing myself), Vail’s on-mountain EMT team was alerted, and responded – strapping me into one of the afore mentioned red sleds. But because at the time my Medic Alert bracelet only read Type 1 Diabetes, when we arrived at the medical station at the base of the hill, the medical personnel assumed what happened to me was related to low blood sugar (it wasn’t) and force fed me sugars, sending my blood sugar into the stratosphere. Additionally, they cut open my favorite blue jacket to access my chest to hook up an EKG. To this day I wonder why they didn’t simply unzip that jacket! At any rate, by the time Doug arrived I was feeling much better. He signed me out, I took a bolus of insulin to cover my skyrocketing sugars, and we headed home.
It was time to find a neurologist.
Which I did. She listened to my stories and ordered an EEG.
Within a week, I received a call. My diagnosis was official.
I had Epilepsy.
Now what?