I was diagnosed with epilepsy when I was six. For decades, I had uncontrollable, partial seizures – seizures that are big enough that one loses awareness, but not so incapacitating that the person requires medical attention. I tried everything: 17 different medications, multiple alternative therapies, and still the seizures couldn’t be stopped. They began with a creeping sensation in my face, and a knot of fear in my belly; sometimes, if I was lucky, the seizures stopped there. But about seven times a month, the misfiring neurons in my head triggered a domino effect that impacted the rest of my body within seconds. At that point, anybody in my presence could see something was wrong, and I ceased to feel normal. I was living with disability.
During the years I managed these uncontrollable episodes, I lived a full life complete with a job, friends, and a family. I felt normal, other than the moments immediately preceding, during, and following a seizure, especially in public. With others bearing witness to my brain chaos, I was rattled, confused, and embarrassed. My neurologists suggested brain surgery: A neurosurgeon would cut out the seizure-triggering section of my brain, which could stop the seizures. I’d steadfastly refused this plan for over 20 years – the idea of having my head cut open freaked me out. But the multiple rounds of unsuccessful medication regimens were difficult, tapering from one medication to another, only to have different side effects, but little impact on my seizures. Managing children and epilepsy was even harder, so on April 29, 2014, I admitted myself to Brigham and Women’s Hospital for a right temporal lobectomy, which was ultimately successful. That option was fraught with complications, but eventually brought my seizures under full control. Despite its challenges, the surgery was a good decision.
Life Under Cover
I’ve been seizure-free over five years, which has given me a taste of what it’s like to feel normal. Yet not a day goes by when I don’t recall that I have epilepsy. I still take anticonvulsants twice daily, which cause a few minimal side effects. About once a month I experience an occasional tingle in my belly or a rippling sensation across my face, minor signs of neurons gone amiss. These episodes are mild and infrequent, so I stopped worrying about them years ago. While these weird sensations are disconcerting, nobody else can detect them, and – most importantly – I’m still in full command of my body. To others I always appear normal.
It wasn’t until my seizures stopped that I realized how much courage it requires to live with a disability. Now that I can “pass” as neurotypical all the time, I want to scream about this requisite courage from rooftops. When I opted for brain surgery, everybody told me I was brave, which is true. But while choosing to have a temporal lobectomy demanded immense bravery, the guts required to make that decision was only a fraction of what it takes to live with uncontrollable seizures, or any other perceptible medical condition. This cockamamie equation reflects our society’s intolerance of people with variable bodily abilities.
Seven years post-surgery, my invisible status still feels like a new privilege. While I am grateful for the camouflage provided by the ultimate success of my brain surgeries (and my hair), I know that many others are not so lucky. Some people have conditions that are immediately apparent, because they require medical apparatus like a wheelchair or seeing eye dog. Others have conditions whose symptoms surface on and off, like anxiety-related panic attacks, or facial tics caused by Tourette Syndrome.
Living with disability
According to the World Health Organization (WHO) over a billion people – about 15% of the world’s population – have a disability, which they define as “an umbrella term, covering impairments, activity limitations, and participation restrictions.”In its definition of disability, the WHO recognizes that the term “reflects an interaction between features of a person’s body and the features of the society in which she or he lives.” That the very definition of the word “disability” is somewhat subjective begs the question, what is normal? Given that 15% of humanity manages a chronic health condition, the world would be a more accepting and compassionate place if people would push their comfort levels with those who are different and expand the definition of normalcy.
By default, those of us in the 15% lead our lives with inordinate degrees of personal strength, grace, and bravery, often undetectable by others. In 1990, Congress passed the Americans with Disabilities Act (ADA), an essential tool for promoting disability rights. However, the ADA’s goal — assimilation into mainstream life — will not be achieved without a major cultural change that guides people to accept that human beings’ physical abilities vary. The ADA cannot provide a blueprint for this because it requires something much larger: An increase in individuals’ tolerance, empathy, and courage. I suspect the transformation will be incremental, taking place person by person. I hope sharing my story will advance the shift to a more open minded society. One where people see individuals whose bodies are not considered “normal” – for whatever reason – and they are able to respond or react with compassion and kindness.