​My Story - What am I doing here?

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  On February 11, 2022 my life changed forever. My husband and I were visiting our daughter who had moved to another state. We flew in to her city, checked in at our hotel and had a nice dinner with her and her boyfriend. The following day, we went out to breakfast at a lovely historic hotel and toured the lobby which was really beautiful. After breakfast, we were discussing what to do until our daughter finished work and my husband suggested touring a nearby sculpture garden while riding motorized scooters. 

Now I had been on Razor scooters, and I knew how to ice skate and ride a bike, so I felt comfortable that I could master the electric scooter pretty easily. I had seen people zipping around in them and couldn't quite see myself maintaining that kind of speed (yes, I know but to me it seemed fast) but I figured I could give it a try. We rented one scooter to begin with, just in case it didn't work out. The first few attempts were pretty pathetic, but by the fourth or fifth attempt I was maintaining my balance. I had a little trouble with the running start you have to do before the motor kicks in but, in the end, I got that too. 

Feeling fairly confident now, I told my husband to rent a scooter for himself and I would meet him where he was. That was the last thing I remember until I opened my eyes in the ambulance. They were asking me all kinds of questions which I had no idea how to answer...what's your name...when's your birthday...who's the president of the United States...boy would I eventually get tired of those questions. I must have passed out because the next thing I heard was someone saying they would have to cut me out of my clothes and my husband not letting them...he said something to the effect of me killing him if he allowed that. 

When everything calmed down, I got the first assessment of my condition. I had a concussion, a fractured eye orbital, and some pretty bad scrapes and bruises. We didn't find out about the brain injury until later. After the MRI results came in, we were told I had suffered a small brain bleed in the area of the brain which processes speech and language. They thought initially that my eye would require surgery. Since some of the best eye doctors in the country were in the city we lived in, my husband asked if it was safe for me to fly. The doctors said that after 48 hours I could fly provided my condition did not deteriorate. I flew home two days later.

Almost two weeks after I had been home the nightmare began. I had my first seizure. In the old days it would have been referred to as a "Grand Mal" seizure. Now they are called Generalized Tonic-clonic seizures. I don't remember the actual event but I do remember feeling odd and tense...almost like I was wound up too tight and could snap at any moment. When it ended, all I could do was sleep...it was exhausting. After that event, I went to the hospital and was admitted for the first of several hospital visits until I got my diagnosis. The generalized tonic clonic seizures were mercifully rare but I was getting absence seizures at least 10 times a day. The neurologists suspected I had developed epilepsy and prescribed anti-seizure meds. These reduced the number of seizures but did not eliminate them.

Eventually, after realizing that my seizures were continuing, the neurologist in charge of my case decided to put me under 24 hour monitoring while removing all my anti-seizure meds. The findings of that study were that I didn't have epilepsy (thank goodness) but I was getting "environmental" or "Psychogenic non-epileptic seizures" (PNES). This meant that my brain was not able to process everything that was being thrown at it. For example, I couldn't talk to someone if another conversation was going on near me. I also couldn't go to restaurants because the noise, bright colors and music would overload my brain. The end result of being in these situations was an absence seizure. In extreme cases of sensory overload, I would have a tonic-clonic seizure.

In addition to the seizures, my balance was affected as well as my body's ability to regulate its temperature. I also had "forgotten" how to do really basic things like cook, make simple decisions, and create a shopping list. The last straw was the diagnosis of PTSD. I had started psychotherapy at the recommendation of my neurologist, and after a few sessions received that diagnosis. This explained the fear I would experience for no apparent reason. The feeling that, just around the corner, a fate worse than anything I could imagine, awaited me. 

When did I start to get better you ask? Because I did begin to improve. It was difficult and slow and I was discouraged many times but improve I did. The first piece of good news I got was that I would not need surgery for my eye. Even though part of my eye orbital was gone, the eyeball had only moved by millimeters and was staying put. Given that the eye surgery was long and complicated, with a chance of not succeeding, I was happy not to need it. Cognitive therapy and physical therapy as well as psychotherapy all contributed to helping me. Cognitive therapy helped me figure out new ways to do things like create a shopping list and cook a meal. Physical therapy helped me with my balance and strength. Psychotherapy helped me grieve for the loss of my life as I knew it (I still get psychotherapy and will be getting a bit more physical therapy for some balance issues that have cropped up). 

One of the things I still deal with is my short term memory. When I was being evaluated before my cognitive therapy began, one of the categories that showed a very low score was short term memory. After months of therapy, there was improvement but not to the extent of other areas. I live with short term memory loss. This has been especially frustrating since I was one of those "prided herself on her memory" people. Can't say that anymore. I also deal with the fact that I look fine. Some people even say I look better than before I had my accident. This makes the fact that I can't carry on a conversation for any length of time and I can "zone out" aka "absence seizure" if I don't step away in time especially frustrating. Even my family doubts me when I say I need to rest because my brain literally hurts from the noise of a family gathering.

In the end, I'm lucky I wasn't hurt more seriously, I'm lucky I didn't lose an eye, I'm lucky that we didn't depend on my salary to live on. Other people aren't so lucky. Feeling lucky though doesn't outweigh the depression from having lost yourself. Not being the person you once were.