Living With Epilepsy-A Perpetual Adjustment Period

Being diagnosed at 49 altered my life immensely. Adjusting my day-to-day to include a condition that randomly strikes disrupting the daily ebbs and flows, replacing old habits and activities with new ones, or none, is a challenge for any adult.

But what about a child?

To develop such a disabling illness in the early years, whether toddler, infant, school aged, teens, or early adulthood, is just as life altering as those much older. Take a moment to consider this. You’re the kid who sits on the sidelines watching others experience all the childhood activities such as swimming or riding a bike. All of your friends, the few that you have, head off to parks and playgrounds by themselves or with an older sibling, promising to head home before dark. Slumber parties and summer camps are limited, or just aren’t allowed. Every day is linked to a clock with alarms set for this pill, and that one, and these just in case something happens. Tutors are hired to help offset your lack of concentration, comprehension, and the side effects of medication. Life is governed by time, appointments, tests, and pills. And, of course, seizures.

Think for a moment what your teen years were like. The parties, sleep overs, hanging out at the mall, going to movies, arcades, and public pools. The freedom you felt the first time you travelled on the bus alone, got your driver’s license, first job, first boy/girlfriend. Remember all the silly antics, missed curfews, groundings, and all the stuff that makes growing up fun, maddening, scary, and normal.

Now, consider this. Limited activities, learning disabilities and missed school days. No freedom, constantly chaperoned, a life as regimented as the army. Living with fear day in and day out and not fully understanding the whys, how comes, thinking, when will it stop?

Yes, my life has shifted, been affected in so many unfortunate ways. I haven’t worked or driven since 2015. I live by the clock with alarms set to remind me ‘take your pills at 9am and 9pm’ Every aspect of my life is documented on my calendar. Doctor’s appointments, tests, call transit access to arrange rides, and the pickup windows going to and from destinations du jour. Reminders to refill prescriptions. Dates of seizures and hospital stays. Gone are all the social events such as dinners, movie nights, coffee dates, hockey, and football games.

My son, is my live-in care giver making sure I don’t drown in the shower, burn myself, or get lost. At age 27, he’s become part time parent and I the child. I used to think being born with an illness or disabled at a very young age would be easier, as much as that could even be possible, than to be struck down later in life. I thought that to lose something that you’d had all along was far more unbearable than to not know what it was like to begin with. But I’m beginning to think I was wrong.

At my ripe old age of 56, I’ve spent the last 6 years on disability unable to drive and after 3 surgeries my cognitive abilities have diminished. As I get older the signs of a body worn down by time, and seizures, is slowing down. Part of our life cycle for sure, sped up by my epilepsy, medications, surgeries, and emotional distress. I miss a lot of the activities I used to enjoy but have found new ones and developed others that have taken a back seat, such as my writing. As you age, become less dependent on pleasing others just to belong to the ‘it’ crowd, you gain insight and independence to be you.

A child, or teenager, hormones bouncing about like ping pong balls, are still learning. Learning about the world, themselves, where they want to go and be. They’re on a trek of discovery trying out this and that learning social skills.

But what if their options are limited? What if they’re met with resistance, brick walls, discrimination, misunderstanding, or ridicule? How does one so young cope with a debilitating illness, raging hormones, and the inability to soar, their wings clipped and useless.

Growing up I wasn’t popular, skinny or athletic. I belonged to that group of invisible sideliners destined to sit back and watch. Bullying back then wasn’t the big deal it is today. ‘Kids being kids’ ‘boys being boys’ was often heard. Spanking, grounding, detentions was how parents and teachers managed the many skirmishes. There weren’t the campaigns and awareness we have now. Having said that, I couldn’t imagine growing up with epilepsy back then nor even now. Children can be cruel. Life is all about survival of the fittest.

No one wants to be unhealthy. No one wants an incurable disease. But. Where I’m sitting, I’m somewhat thankful to have gotten well past the ‘coming of age’ stage, experienced marriage and child birth, had a career, drove a car, travelled to England, Hawaii, Fiji, and California.

It’s so much easier to go down than up, I reached the top of my mountain and experienced life’s crazy cycles, and despite the challenges I face now, it’s okay to take the easy route and slide down the other side.

Could you imagine climbing your mountain with one hand tied behind your back?

**And as always, the above is just my opinion derived by my thoughts, emotions, and limited knowledge. This is in no way meant to dismiss the experiences of others or be a true representation of what one goes through during the various stages of their life or to what degree epilepsy restricts them.

With the holiday season almost upon us, I would like to take this opportunity to wish everyone all the best. Whichever seasonal occasion you may recognize, share these remaining weeks of 2021 amid family and friends. Whether via Zoom, Face Time, Messenger, phone, or in person, feelings of love and hope transcends time and space.

Here’s to a new year full of promise. Let’s hope that 2022 leads us down the path towards recovery and some sense of normalcy.

With much love and hugs,