Living with Epilepsy for 25 years

Nine, twenty-nine.

This day hovers at the end of every September. Each year, as the season changes, I look forward to the day so that I can actively ignore it and pretend that nothing is wrong. Until this year. This September 29th is different. Since I was sixteen, I have had epilepsy, and for most of those twenty-five years,I hid my disability as best I could. I also tried to hide the shame, confusion and fear.

After my father died, I saw how shame could ruin a person. I knew that I deserved better and that my family deserved better. So, I started small. At first, I just wanted to stop pretending that I was someone else. I never imagined that I could accept having epilepsy, or feel grateful or proud. Yet, it has happened.

Now that I am not constantly hiding from myself and others, life is better. I am more relaxed. I am more positive. I take care of myself more, and I can support others too. However, for many of the last twenty-five years, I have felt as if I could not take care of myself.

9-29-1984 - I was sixteen, smart and apparently healthy. In June, I passed my driving test. In August, I finished the San Francisco Marathon (crawling the last six miles), and two weeks earlier, a really cute girl somehow became my girlfriend after we kissed at the first high school dance. When I woke up that Saturday morning, you could forgive me if I had thought, "Life is good today."

I went to a speech tournament feeling confident, until small electric jolts surged through my body every few moments. For about an hour, my jaw suddenly spasmed causing me to stutter and pause. It seemed as if my lower jaw wanted to separate from the rest of my face. Now I recognize these signs, and relax. When I was young, I pushed forward endangering my life.

As I would soon learn, seizures are dangerous, draining, and disorienting. I continued debating; my last words were, "please vote for..." and the hook was set. My jaw wrenched right, the rest of my face jerked left. I fought to pull my face back together. I failed, and fell unconscious. My glasses broke as my head hit a desk and then the floor.

When I regained semi-consciousness, I was exhausted and confused. I wouldn't have recognized my mother if she stood next to me. I could not recall my phone number, which baffled me, because even today, I can recite my old phone numbers from first through 11th grade. But on 9-29-84, I forgot my phone number. For several minutes, I forgot who I was.

I wish that I could tell people that the first seizure and this date were insignificant, but it isn't true. September 29th is the most significant day of my life. Does my disability define me? Not completely. I am still a father, and being a father is more important to me, but it doesn't define me the same way. I am still a man, an American, a photographer, an educator, a Californian, but I am a person with a disability. Every day I organize my life in response to having epilepsy. Every day I take medication twice. Every day I battle. Some days, I feel like I lose, but every day I keep fighting. I am a fighter, and a competitor, and some days I feel weak. For years I focused on the weakness. I finally recognize the strength, and I define myself differently.

There were many reasons that I chose to hide having epilepsy. This is difficult to explain without sounding like a whiner. As a society, we often ignore people with disabilities or we look at them (us?) differently. We even tell our children that it isn't nice to stare so that when children grow up and become disabled, they already know their role: become invisible. Don't let people see you.

I hope our world is changing or that I will learn I am wrong. This summer I become more comfortable with myself by visiting Camp Coelho, a summer camp in Yosemite for kids with epilepsy. While I aspire to be a role model, the next generation is better positioned to show us how to relate to each other. Young people are more accepting.

On the other hand, I have a different role. I know how to advocate. And I know how to use imagery to make the invisible visible. I also have twenty five years understanding the difference between the two.

notes to photos below

epilepsy coming out process - Images by bryan farley

The first four photos are from a fundraiser that took place on my birthday. This was one of the first events where I acknowledged having epilepsy, at least in a meaningful way. I was nervous; and I see it in my photography, especially the outtakes. The event raised money for the Epilepsy Foundation of Northern California; it also raised my own awareness and spirit. My family attended, and I introduced my children to epilepsy. They really enjoyed the event, and may always think of epilepsy as a day at an amusement park.

The last two photos were from my visit to Camp Coelho in Yosemite. I included one photo of me and one of a camper in a tree. When I photographed the camper, we were both 40 feet above the ground. I love the symbolism and the hopefulness. Life won't always be so easy, but then again, everyone struggles at some point, and when reaching for the next branch, it is a good idea to have a support system.

bf

Comments

[Katrina]

so proud of you.

[Laurie Reemsnyder]

This is very touching, and I admire your sharing it with others. It is in our commonalities that we see how really all of us struggle with disabilities of some sort (be they emotional, medical/physical, or mental) and try to disguise them rather than acknowledge and move forward and beyond them. You have clearly taken the critical steps toward that growth. Thank you for opening up.

[Bryan]

Laurie,

Wanted to thank you publicly for taking the time to comment. Knowing you has helped me learn more about myself, and I am glad that I was able to share this part with you.

Thank you for all your support; thank you for being so understanding.

Look forward to seeing you soon.

BF

[Mandy Krzywonski]

I just want to say that I absolutely love this story... I can see a lot of myself in you. All of us, or you might say the "Epilepsy Community" are a lot alike. It snuck up on us, and most of us were "healthy" and never expected something like this to happen to us. It's a scary thing to go through, and the term "coming out" is perfect for what it feels like.

I remember how I tried to hide my problems for years. Friends would ask why I no longer attended school, and I would lie and say I transferred. I didn't want anyone to know that I was "diseased". But over time you learn to rise above the triumphs in your life. The pain is no longer so painful - at least on your heart and in your mind.

Although the seizures come and go, I have realized that they don't control me. I am a growing and somewhat successful artist, I hold a self-organized charity, and life is becoming my own once again.

Epilepsy will not hold me down, and I'm glad it isn't holding you down. Wonderful story. I linked it here: http://mandykrzywonski.blogspot.com/2011/07/your-first-seizure-stories.html

[bryan farley]

Mandy,

I forgot to reply here... sorry about that.

Thank you for your compliments and thank you for posting this story on your blog. I really enjoy seeing how you are collecting our stories.

Lately, I have been thinking a great deal about how being quiet/silent interfered with my time in college and the years following. I am glad to see you being more outspoken (even comfortable) at such a young age.

Silence often robs people of opportunity, and while I know I had good reason to be silent, many of my own problems were created by my silence. People would have understood me better if I had at least tried to explain my situation... or so I think. Who knows?