This personal story was submitted by Eliza. I hope you enjoy learning about her experience.
I stumbled across this quote last week, which is quite timely as I approach the two-year anniversary of my first grand mal seizure. I’ve learned so much and changed in innumerable ways in such a relatively short period of time. When you’re dealing with a diagnosis of a new illness, they say that’s often what happens. Your life gets turned upside down. And then what? How do you learn to live in your new upside down life, where things are vaguely recognizable and nothing is really the same?
Sometimes, I feel like I’ve conquered the chronic illness world and have truly, gracefully grown into my new self. In those moments, I feel reflective, together, connected, and very much at peace with my reality. I’ve pinpointed a number of specific moments that make me feel this sense of growth and accomplishment.
Moments of strength
One occurs when I’m out with friends on the weekends. I can say honestly that it does not bother me to be around people who are drinking when I am entirely sober. When I think about where I started in this department soon after I stopped drinking due to my epilepsy, I can’t believe I’ve made it this far. I used to be bitter, resentful, and jealous. I particularly didn’t enjoy engaging in conversations like this one:
“You’re not drinking? Me neither. I’m on a two week cleanse. It’s so tough.”
The choice associated with sobriety in a cleanse distantly mocks my own sobriety. The risk that I run is too high because alcohol lowers the brain’s seizure threshold, and when I first started figuring this whole chronic illness thing out, statements like these would press a particularly sensitive button in me. Don’t get me wrong – people still make comments like this all the time. But now, I feel so much more confident articulating my experience and perspective, or if I can’t fell the button pressed at all, I smile and say, “That is SO tough.”
Moments of serenity
Another one of these serene moments comes when I tell someone new that I have epilepsy. Often times, these experiences are connected to the aforementioned alcohol situation, because how weird is it for a 27 year old to never drink ever? Apparently, weird enough for people to notice. I used to fumble through this conversation feeling a lovely mixture of embarrassed, shame and feeling of being exposed, all due to my perceived stigma associated with having seizures and epilepsy. Although there isn’t much I can do to prevent my brain from randomly firing abnormal electrical activity to cause a seizure, the concept of sharing such a personal, physically vulnerable moment with a new person caused me great stress.
In her book Daring Greatly, Brené Brown discusses how one way to live a wholehearted life is to be vulnerable with people in your life who earn it. I’ve thought a lot about the idea of who earns the right to know about my epilepsy, and when I do decide to be vulnerable with that important information and share it with someone else, it’s because I’ve determined that they earned it. I trust you, and you deserve this information in order to understand me better. This, in addition to time, has helped me acquire more grace in this arena.
Moments of anxiety
There are other moments, however, where I feel none of those wonderful, positive emotions. Anxiety levels rise rapidly, peace shatters around me, and I can’t imagine how I ever felt like this was something I could live with forever.
It is in these moments that I remember the true meaning of chronic. Epilepsy is a constant in my life now. I have been extremely lucky to be seizure free for a year and 9 months, but doesn’t mean it isn’t with me every single day. If I had another seizure later today or tomorrow, then would all of the stigma and shame come flooding back in? I wouldn’t be able to drive again for three months, a legal consequence for having a seizure while medicated according to Texas state law. This happened after my second seizure, and it felt like my legs had been cut off at the knees. Independence is a true prized possession in my life, and one that easily slips away after a seizure. Living in a city with limited public transportation and no Uber makes the thought of not being able to drive difficult to internalize.
Often times, I think about it, feel it, re-live it, or talk about it multiple times a day. Every time I get in my car, a wave of fear washes over me. Sometimes it’s larger than others, but it’s always a conscious thought as I get in the driver’s side of a car. My second seizure happened when I was driving, so this fear is amplified by experience.
Moments of fear
I also experience a spike in fear when I don’t feel well. With every headache, anxiety begins to mount. Every time I can’t sleep, I get nervous. I also know that it’s a cycle, and the more stressed out and anxious I am about a headache or lack of sleep, the more likely I am to have a seizure. So the cycle continues. This cycle has led me in some interesting and scary directions. Once, pretty recently, I had a panic attack in the middle of a coffee shop while doing my grad school homework on a Saturday morning. I was convinced I was having a seizure aura, so I googled it just to be sure. WebMD confirmed, so I called my mom, who directed me to call my primary care physician. My doctor, who is a godsend and a close friend, answered his phone before 10am on Saturday morning and instructed me via phone how to take my pulse. He essentially determined that my blood sugar was low and I needed to eat, and assured me that I was going to be fine. By that time, my mom had arrived at the coffee shop after bolting out of the gym (mid-workout) and flying across town to make sure I was okay.
I can look back on this coffee shop incident now with some amusement and remind myself never to google medical symptoms in moments of panic, but this is also a great example of the burden that my parents and my close friends bare in my chronic illness.
Moments of compassion
I’ve noticed that some months I’ve had more success facing my reality with honesty and courage, and it all depends on how much compassion I have with myself.
Let Eliza know she is not alone with a comment below or by submitting your own personal story.