For as long as I can remember, one of the ways that my family and I have dealt with my disability was through the use of humor. It was a way to lighten things up and a reminder to me that, while my circumstances could be difficult at times, there were far more tragic things in life. That concept was solidified for me when I joined a sports team in high school. Being around others with disabilities who were older than I was and who were comfortable with who they were was a big lesson for me. Over time I used laughter to truly overcome my insecurities. Learning that skill has served me well in the years since. It was when I was with some fellow athletes that I heard my first “gimp” joke.
Question: What do you do when you see an epileptic having a seizure in the bathtub?
Answer: Throw in your dirty laundry.
It’s one of those things that you know you shouldn’t laugh at, but you just can’t help yourself. Humor like that has helped me more times than I can count when my pain and frustration level are high and my patience is very low. Finding the humor in an otherwise frustrating situation has always helped me to shake things up.
I used to be really uncomfortable around people with epilepsy. Seizures were scary to me because I knew they could do all kinds of damage. I also knew there were specific things that needed to be done when someone was having a seizure in order to keep them safe. I wasn’t sure I could do those things effectively. Collectively, that meant that even if a person who was with me was talking about someone who had epilepsy in conversation, I would look at the floor. I couldn’t mess up and do or say anything offensive that way.
As I grew into adulthood and started to study the various types of cerebral palsy there are along with their secondary conditions, one of the things I was grateful for was that I never had a seizure that I knew of. In fact, I avoided most of the secondary conditions often associated with c.p., like learning disabilities as well. I considered myself to be very lucky because that was the case.
It was about two years ago that I started having really weird “episodes.” I would sleep for extended periods of time. More accurately, I would go to bed one night at the regular time and I wouldn’t wake up until almost two days later. These episodes were fairly infrequent at first, only happening every three months or so. Doctors of various specialties ran all kinds of tests. All the results came back normal. A couple of times when I was in the emergency room some doctors even told me that these episodes were my fault because I had to be misusing my medication. One doctor was so convinced that I was the cause of these problems that she had me kicked out of the emergency room by security when I asked for a second opinion.
But the problem continued along with the bloodwork and the EEGs and the sleep studies. All to no avail. Nobody could tell me what was wrong. And the episodes were getting more frequent. In the last few months, they have occurred every two or three weeks. Because I had no way to tell when they were coming on, I got to the point where I was scared to sleep. Also during these episodes, I would miss doctor’s appointments and caregiver interviews and all kinds of other things. I started to feel lazy, helpless, and unprofessional.
On September 5th, I started another sleeping episode. I had given my caregivers detailed instructions about what to do if they found me sleeping and all those things were done. Several times per day my caregivers gently turned me on my side, wiped my face with a cool cloth, and tried to talk to me softly. They even played with my puppy Levi and made sure he was walked and fed while I slept. All of that was really nice of them. After almost two full days of being unable to wake me up, they decided that it would be best to get me checked out in the emergency room.
During my 40 hours of sleep, I obviously didn’t get up and go to the bathroom. A CT scan revealed that urine had backed up into my kidneys and caused some significant damage. I was transferred to KU Medical Center at about 2:30 a.m. on Labor Day.
It was there that I was able to explain to the doctors how much these sleeping episodes were interfering with my day to day function and I wanted to get to the bottom of what was causing them. A neurology resident came to my hospital room for a consult. She asked me to describe my sleeping episodes to her while she asked about 50 specific questions in the process. When the conversation was done, she told me that she thought I was sometimes having seizures at night while I slept. Since I live alone, nobody can verify that. But she thought that after I had these nocturnal seizures, my body recovers by sleeping for hours and hours at a time. She verified my research that many people with cerebral palsy develop epilepsy in their lifetime. She started me on anti-seizure medication. There are still some tests to do to find out some more information, but it’s a pretty safe bet that epilepsy is a new diagnosis for me.
Am I happy about this news? It’s scary and overwhelming right now, but it is also a solid explanation for all that has been going on. And it’s something I don’t want to laugh at but I just can’t help myself. I mean really? There wasn’t enough in my life that I already had to manage?
It looks like I have epilepsy. That still isn’t comfortable for me to say. Yet, just like all my other disabilities, it doesn’t define me. It never will. It is another part of who I am.
I guess this is just another way that I have found to shake things up.