Community Forum

Single and Epileptic in NYC

I wrote an article about what it's like to live with epilepsy on https://medium.com/@elizabeth.s.roldan

I’m a 36-year-old female who lives in New York City in a studio apartment. I always wanted to live like the women in “Sex in the City.” Now, I am doing so.
I live an independent, fun and sexy NYC lifestyle! But I have epilepsy, so I’m forced to go through life with extra precautions. I do not allow epilepsy to prevent me from living my best life and I want others with it to do the same.
Being a New Yorker, the train is my life. I try my best to stand far from the platform so if I do have a seizure, I don’t fall onto the rail. Driving, of course, is out of the question, probably the most life-altering consequence; but fortunately, living in the city allows me great mobility.
If I am out after 11 pm, I take a cab, preferring a seizure sitting in a car sitting down to standing in a subway station. If I have a seizure in a public place, paramedics must be contacted immediately. This is humiliating, as crowds will often gather to watch what’s going on.
NYC is filled with theaters and clubs that I enjoy frequently. Strobe lights have never induced a seizure for me like some; but if they come on, I immediately shut my eyes tight and find a safe place until it’s over.
Diagnosed with epilepsy at 21 years old, I am fortunate to have had fewer than ten “grand mal” seizures. This type makes the body shake uncontrollably for several minutes. Fortunately, twice daily medication largely controls my epilepsy. Some people have epilepsy that cannot be controlled with it. My fear is always present, however.
My grandmother calls me at least twice a day to confirm that nothing happened. I carry a special anti-seizure medication, which immediately changes the chemicals in my brain to prevent a seizure. So, whenever I sense the onset of a seizure, I can take it; sometimes, however, there is no warning.
Epilepsy does not prevent me from traveling; but I do have to plan carefully. I always buy an aisle seat in case I do have a seizure. I don’t want to be shaking between two passengers and flight attendants can respond faster.
I’ve traveled internationally with friends on their business trips. While they work, I explore places on my own. During these times, I always leave a list of where I’m going and how I will get there. If I don’t get back to the hotel, they know where I might be or know about the local hospital which I locate immediately upon arrival.
I even do snorkeling, inform the leaders and stay close to them. I cannot do deep diving, but that’s too scary for me anyway.
What makes epilepsy scary is its unpredictability. The actual seizure doesn’t cause long-term harm but the injuries I might sustain during a seizure can be serious. For example, if I bang my head against something, it can cause a concussion. I have bitten my tongue several times but only formed cuts. It’s not a big deal; it will heal! (It’s a myth that you can swallow your tongue.)
If I have a seizure while cooking, it is possible to burn myself with oil or water if the pot falls on me. So, I use only the back burners. Taking a bath is another issue, as I could drown if I have a seizure. I don’t even shower too long because I could fall and hit my head. I take only long hot baths while someone is in the apartment. After 10 minutes, my friends knock on the door to make sure I’m fine. I don’t lock the door so they can come in if necessary.
Every time I experienced a seizure, I’ve been wearing my medical emergency bracelet. It is a fashionable bracelet with the medical symbol that indicates I have seizure disorder and the telephone number to call. I don’t have a password on my cell phone so anyone can easily get into my phone and see my “In Case of Emergency” information.
I’ve had several seizures in public places in NYC: once at the Metropolitan Museum of Art, twice at a restaurant, another at work at my desk and once on the street. When I was in the street, I was walking and fell. When I awoke, two kind New Yorkers responded, asking if I was fine and waited until a car arrived to take me home. One even took my cell number and called me twenty minutes later to confirm I reached home! I had a friend come over in case I had another seizure. Sometimes when you have a seizure, you can have another one shortly after.
The dating scene in NYC is hard enough. Now, add a layer of having to tell men that I have epilepsy. But I must. I need them to know so they don’t freak out and know exactly what to do. So far, I’ve never had someone get up and leave! Their usual reaction is a look of fear, followed up by “Wow, sorry to hear that. How serious is it?”
Living with epilepsy doesn’t have to mean you cannot enjoy life. It means you have to take precautions to try to live life as fully as possible. Prevention is key. You should surround yourself with people who care about you and explain to them. I used to be embarrassed to tell people, but no more. It’s necessary.

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The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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