Sometimes having a hidden disability can make you feel like someone has punched you in the gut, but nobody can see it but you. Needless to say, this sucks, but it’s not your fault. You just have to deal with it and somehow make it work.
I was first diagnosed with epilepsy at age 13 after having two grand mals one day after the other. I didn’t know what epilepsy was at the time and I didn’t even know what a seizure was. I just knew I had blanked out and woke up very tired and very confused. Almost 13 years later, my relationship with epilepsy is still unstable. We’ve had good times, bad times, and second-by-second times. While I could easily come up with pages and pages of ways epilepsy has made life more difficult, I think it would be more pleasant for all of us if I told you about how I’ve tried to accept something that’s no doubt challenging but also (so far) here to stay.
I think most people would agree that one of the worst experiences for anyone is having to be hospitalized. Sometimes for a person being monitored for seizures, this means a few days to multiple weeks with “rainbow hair” — a very optimistic word for having one’s head covered in colorful wires. Sometimes it means having to stay in bed due to being a “fall risk,” videotaped 24/7 (except when going to the bathroom), and naturally… more inclined to feel glum. At first, one of the toughest times to get through seemed to be looking out the window on a beautiful day and wishing I was outside. This didn’t do much for me at all, and I forced myself to try to pay attention to how the hospital brings fresh new experiences all the time, and they don’t always have to make us wince. Here’s some insight I’ve gleaned from being in the hospital — things I might never have discovered if I was in any other situation.
1. Met some of the most compassionate people on Earth. I already respected neurologists and other doctors, but only when I was hospitalized did I realize how heroic nurses, PCTs (Patient Care Technicians) and others who work in a hospital can be. I realize it’s part of the job, but it takes a special type of person to do that.
2. Met a roommate who ended up being one of my most treasured friends. The first day she walked in I thought she looked like a weirdo. Sure there were the wires, but she also had a mountain of books on her bed and other miscellaneous objects. By the end of our stay we had each comforted each other after a seizure, traded opinions on the best products at Trader Joe’s, exchanged seizure horror stories, and taught each other the benefits of natural treatments. Let’s just say by the time I left I loved coconut oil and discovered she was just as eclectic as I had judged her to be the first day but slightly less of a weirdo.
3. Rebellion comes in all shapes and forms. It can be fun, but there’s always a time and a place. One of my most memorable times at the hospital was getting out of bed and dancing to house music with my roomie. We were quickly stopped by a nurse and it bummed us out, but was good while it lasted. Speaking of the importance of letting yourself be happy in whatever situation you’re in…
4. Cracking jokes and laughing will get you through s***. Once I was feeling so depressed in the hospital I imitated a grandma, curtsied and said “Welcome to my humble abode.” And while the neurologist very seriously commented that “humor is a sign of good cognitive functioning,” the rest of the team just enjoyed. And me? It was awesome to step out of feeling suppressed and limited and taking more control over my feelings and situation. You can use those flirting skills, or lack thereof, with that resident you may or may not have a crush on. On a similar note…
5. Chat with people! Only if you want to, of course. From a nurse who has spent her breaks backpacking in Chile, to a PCT so proud of her daughter’s hip hop performance (which she recorded and will show to you), to the account of a nurse’s journey to the U.S. from the Philippines, I was even more blown away by these people than I ever thought possible. Try and strike up a conversation. Sometimes it might not work, but if it doesn’t, at least you tried.
6. No matter how annoying things seem, know that everyone is there with the best of intentions. That said, stick up for yourself. Getting your blood pressure, temperature and sanity checked every hour or two can make you want to pull your leads (i.e. EEG wires) out, but it’s all transient and you’ll be OK. On the other hand, if getting woken up at 6 a.m. to get your vitals checked is really stressing you out, try to ask people to adjust.
7. Try not to think too far ahead. Make lists of what you can do now and not after you get out. This is probably the toughest thing on the list, and something I still struggle with all the time. It can be really disappointing to find out you need to stay in the hospital longer, but if you do, try to accept it and think how you could use your time there to take care of yourself and do things you may not have time for outside. Read a book, write a story, watch funny videos, sketch something, etc. You don’t have to suffer so much — there’s always a way to better appreciate the moment and love yourself no matter what.
This list is by no means comprehensive, but hopefully even one or two things on it may make your next hospital stay — or just, you know, your life — even a little more tolerable.
Take care and be well.
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