I am an incredibly lucky woman. Now 45 years old, I was diagnosed with a seizure disorder at age 18, while my parents had good health insurance and were able to get me treatment right away. I had my first grand mal seizure, which was terrifying and awful, the summer between graduating from high school and starting Yale University. I graduated, now work at a job I love, and have two amazing kids and a husband I’m still in love with after 22+ years of marriage. Those are indicators of the good life for me, no matter what else is going on, but I recognize that many of those exact milestones are much more difficult for the majority of people with my diagnosis of frontal lobe epilepsy.
So, I’m acutely aware of how blessed I am and how grateful I should be to all my friends, family, coworkers, and community. But I cringe when I hear well-meaning acquaintances congratulate me on my positive attitude in the face of adversity or tell me that they believe I’ve seen medical success because of that optimism. It’s insidious judgement in disguise. I’m public about my epilepsy surgery and seizures, but I’m not your happy warrior.
My best childhood friend, a cancer survivor, has a similar perspective. She is frustrated by well-meaning friends and family who attribute her survival past all predictions of even the best doctors to a “good attitude.” I’ve heard her tell many people that she’s just lucky that her cancer cells happen to respond to chemotherapy, and that there’s nothing else more special or virtuous about her that has helped her outlive her peers. Her wry and sometimes dark sense of humor comes through as she tells people that she actually has a really negative attitude, and she’s still alive, so people should stop the implied victim blaming that comes with forcing cancer patients to be optimistic and upbeat even when enduring painful procedures and treatments.
This past year has reinforced both the positive and the downside of being open about difficult medical procedures. At the outset, I embraced telling my story on social media and in our local newspaper as a way to raise awareness and funding for epilepsy. It’s a neurological condition on the rise with the latest statistics stating that as many as 1 in 26 people will have seizures at some point in their lives, but it remains vastly under researched and under-funded, despite its designation as the second most common neurological condition in the world.
I dyed my hair purple (the color of epilepsy awareness) and ran races with Athletes vs Epilepsy, a division of the national Epilepsy Foundation, raising money for research along the way. Friends and acquaintances followed my travels and surgery adventures from marathons to hospitals, with likes and messages online and check-ins and meals in real life. The concern was real, and I was able to educate people through my experiences.
However, I found it much harder to be public and brave after my surgeries. I expected to be in pain and to need quiet time to recover physically upon returning home. I was not prepared for the depression and anxiety that are known side effects to surgery, especially in the part of my brain they removed. I am only now, five months later, able to walk distances again and will need a bit more time to get back to the ultra-marathon shape that was my life before September. Brain surgery took away my seizures, but it also took away running.
While some friends encouraged me to help break stigmas against mental health by being open and honest about my internal struggles, others just wanted to focus on my decreased seizure frequency and declare to me and my husband how much better our lives must both be now that I was finally experiencing seizure freedom for the first time in 31 years. Well-meaning friends really wanted me to focus on the positive and not talk about the hard parts of surgery, reminding me of the many lucky turns my life had taken to bring me to this moment. I have struggled to remain real and not feel dishonest while sharing the good parts of my recovery, balancing revealing my mental health setbacks to only a select few friends. So many people who’ve been through my experiences and worse have seen the positive side of medicine in treating sickness but without an immediate uptick in quality of life, as many adjustments must be made in recovery.
I’ve sat with so many people with similar diagnoses to mine, and helped them navigate transportation, job opportunities, and educational systems that are not designed to help people with disabilities live a full life. Many people with my seizure types remain limited in their access to health care in general and will never be able to work with the best surgeons in the world, nor see full recovery, through no fault of their own. Some of their days are rough. Some of my days are rough. And it’s okay to be honest about that.
Be kind, check in, and let’s get through this together, friends.
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I recently got angry about ableism I experienced and an able bodied person replied “Your blessed stop complaining!” I do feel incredibly blessed to live in a country with laws like the ADA, but I will speak up when something is unjust. Some disability related things are negative or even ugly and we must express all aspects of disability.
Amy, congrats on all your triumphs, I am a mom of two boys and promise you, you will get through it. I had Epilepsy for 14 years until 3 brain surgeries and discovery of a brain tumor, completely unrelated to my seizures, has now left me seizure and medication free but not without internal scares that have effected me for years.
It’s been 25 years since my surgeries, going back to college and graduating with a 4.0 but still suffer with emotional pain alone… no one can relate until they walk in your shoes.
I will be thinking of you and thank you for sharing… 🙏🏻
You are stronger than you I’ve yourself credit for…
Stacy
I relate, I think. I am open also, but don’t always feel positive. I realize that I’m blessed. I am 42. I haven’t had any tonic clonics in 6 years, and I’m grateful. To most of my family and friends, that’s the measure of success. No big seizures? Well, then all is well! They don’t see that I still have myoclonic seizures and they’re frustrating and sometimes dangerous. They don’t see that the 3 medications I take twice a day leave me so tired that I sometimes find myself falling asleep sitting up (I am not a surgical candidate and I’m stuck with what I have – which I recognize is more than some people ever get, and I’m again, grateful). They don’t understand that because my job is so demanding, I routinely short myself on the amount of sleep I know I need. I have a perpetual fear of a tonic clonic resulting from sleep deprivation and stress that will have been caused by my own choices. They don’t understand that I’m scared to death of SUDEP and that my 3 kids will grow up without me. So while I’m blessed and grateful, I’m also frustrated and scared. I think it’s mostly a function of using WHETHER there are seizures as a measure of success. it’s not that simple.
Nice. I started having seizures at age 18 or 19 as well. Surgery is always risky . It took them 12 years to consider surgery with me , they decided on VNS, a new type of VNS. I still have seizures , but it’s ok . I do not know what your neurologist told you as far as options , but I am lucky that I had a choice on what to do next . Brain removal, RNS, VNS , deep brain stimulation , or no surgery. Not everything is positive, so I respect your blog post . If you want to share a little of my story to people that ask about epilepsy ,just look up my MFA film “Seizing the Unrecorded” or “ePillepsy” and my name