Epilepsy alone makes your life a challenge one moment to the next and not just because I can’t get around. In reflecting on my life, I had not really dealt with the fact that I had a seizure disorder or that I was a victim of a violent crime. I know that sounds bazaar but it took me many years to finally admit to others that I had a disability and that maybe I wasn’t super human and unaffected by it all. Victimization is yet a completely different animal like the seizures it strikes you when you are least prepared, although it brings back small yet devastating moments of how afraid you were when it all happened. As if, it had just occurred a moment ago. At least with my seizures I am unconscious and don’t now is happening until it’s over with. Yet they share many things and most of them are about having no control, which leads people with a nasty disorder called Post Traumatic Stress Disorder, (more on that later in the blog).
I have always had difficulty with the word “disability” but in many ways, it really defines my situation, not me as a person; as is true for many people who have disabilities. I also have never wanted to think I was a victim. In fact the odd thing is that I was more willing to admit I was a Lesbian as if that was somehow more acceptable than admitting that I had seizures or that I was a victim of a violent crime.
What kind of logic is that? Who only knows it must be some form of Amy Kratz rationale, better known as reason without reason. Only in that one would think that being a victim of a violent crime, having a head injury, and seizures is more, or was more justified in society than being a Lesbian. To this day people that I truly love cannot accept that I could be a Lesbian and have even told me I am going to hell because I am. Nonetheless, at age 19 I came busting out of the closet ready to tell anyone, ( except my family),when I couldn’t come to terms with the fact that I had lived with a head injury and was a victim of a violent crime. In fact coming out of the closet, felt empowering and therein lies the answer of why I was more willing to deny my disabilities and victimization and run through the streets with a bull horn yelling, ” I’m a dyke!”
Seizures are debilitating, not just because I lose control of all my bodily functions, falling, twitching, drooling on the ground, my lips turn blue and I urinate all over myself; what a sight that must be, Pretty huh? They feel like they undo everything that I have worked for and towards. They have a way of deconstructing who I am, ripping me from a strong sense of self, to a pitiful lump laying on the floor. They steal my control and dignity. I am fortunate though, unlike others I do not have very many of them. I may have one a year, two at the most. Some people have many of them daily, just as I did when I was first injured. I had many repeatedly, for a long time but then they became less and less as my brain healed, until I was having one every year or so and now I have had one in four years. However when I was drinking I was having them every 3 to 6 months.
Receiving a head injury like this as a child gives one a better chance of fuller, (I say this because you are never quite the same again) recovery, because the brain is so amazing it too heals and grows as we grow. The seizures got further and further apart, lasting less and less time yet this was a very slow process that took many years along with all the other healing that needed to take place. Physical healing is faster than emotional healing and that is unfortunate but there is an obvious process to everything in our lives. A never ending process of growth and healing, that we can somehow never rush through it takes its good old time.
Seizures are humiliating and frightening; they take me and throw me on the floor just when I am at my best, doing whatever I do in my life. They actually usually take me by surprise. I don’t have an aura which is a warning, it could be a smell or a feeling but if you have them you can sometimes prepare yourself to have a seizure, like get to the floor or a safe place so they aren’t as dangerous. I may feel fine all day and out of nowhere, I seize and flop on the floor like a fish out of water. There have been so many times when I was alone while having them and woke up I would lay there thinking, what the hell am I doing here and next what was I was going to do because I was so confused. I would finally come to my senses and pick myself up, clean myself off, clean whatever mess I made up and go to bed for about 8 hours, usually having a migraine like headache from lack of oxygen to my brain.
There have been several times I have come out of a seizure and being picked up by Emergency Medical Technicians putting me in an ambulance. This is always very disconcerting because I wonder what actually happened to me. Did I break something? Am I bleeding, or what?
Seizures undermine my sense of control. None of us are in control of everything but when I seize, I lose consciousness and that is the ultimate loss of control in my mind. I have what is termed Clonic Tonic or Generalized seizures or what used to be termed Grand Mal seizures. I experience loss or altered consciousness; my body stiffens twitches, and jerks uncontrollably. Since they tend to happen when I am, least expecting them, there is no real preparation to get myself to safety. When I know I am having a seizure I am already in it. In the very beginning before I pass out, I have heard myself say, “Oh God” or “Help” not knowing if anyone has heard me or not. I could even be sitting and find myself across the room lying on the floor when it is all over with. I have even started to spin while standing and then fall.
It is like being a marionette and having strings attached to your limbs that someone else is moving. I wake up confused and not able to function. I have had people ask me questions after a seizure, because they are trying to find out if I am all right. I can hear them but at times I respond in a jumbled mess, making little or no sense at all. I went to the hospital in Salisbury once after having status epilepticus; (seizing repeatedly) and telling the medical staff that I was diabetic, I am not. Where this came from, I do not really know and I don’t remember it; I was told later about it. It took me hours to recover and actually make any sense at all. I spoke in something like what mental health professionals call “word salad” words that don’t have any connection or relation to anything; they are all disjointed not making any sense.
That day reminded me of my inability to talk when I was hospitalized, because everything I said made no sense or I just could not get it out and I knew what I was trying to say. The emergency room staff and asked me, how to contact my family, what were their last and first names? I messed them all up, I couldn’t remember anyone’s name and I sent the hospital and my new girlfriend at the time on a wild goose chase over the phone trying to find anyone in Sussex County with the names I was spewing. This kind of disorientation and confusion is common and usually clears quickly. I’ll never forget my brother showing up he lived 45 minutes away. However, this particular day I had so many seizures that it took a lot more time to get through the disorientation and confusion.
Actually, the falling is what is so devastating. The fall is the thing that actually makes seizures so dangerous. The seizure is usually not as harmful as it looks it isn’t painful unless you hit some body part on a table, or the floor, or whatever and I wouldn’t know it until I woke up. I have hit many body parts and broken all kinds of household items and body parts while having them.
I had two seizures at the hospital I used to work at in Salisbury. I was one moment standing at the elevator waiting for it the next being rushed down the hall by people I knew but couldn’t remember who they were, on a stretcher. They had called a code believing that I had a heart attack (Because they didn’t know I had seizures) nurses and doctors ran to the scene with a crash cart in hopes of reviving me if needed. They found my heart racing not stopped. Seizures make your heart rate increase and your blood pressure rise. In fact one time I had one in Snow Hill walking down the street and 20 minutes later my heart rate was still 180. The physiology of a seizure is actually really an incredible and devastating thing; it creates incredible stress on your whole body. Every muscle clenches, your jaws, your arms, your back and you become rigid like a board, as if you were being shocked and in fact you are, but you don’t feel it.
The worst seizure though was the other one at the hospital; I say it’s the worst because of the injury I sustained. I had just taken a smoking break and was coming in. I had just gotten to the top of the first flight of stairs. Out of nowhere, I knew for a second that I was going to seize and then I was in it full force, I became rigid like a soldier standing at attention and then I knew nothing. I must have fallen backwards down the stair. I woke up at the bottom, dazed as usual and slowly gathered my senses enough to realize I was in a pool of blood. I got up slowly as the body and balance would allow. I had to figure out where I was. I came to the conclusion soon after that I was on the first floor.
I tried first to open the door but I had blood all over my hands and the knob wouldn’t turn, so I beat on it, yelling. Quickly realizing that no one would answer I was banging on an outside door the one I just came in leading to a parking lot. Still very confused and not rational enough to realize that the other door in the stairway led down the hall to the Emergency Room, also not with it enough to just dry my hands off to turn a knob. My knee was killing me and I had no idea where the blood was coming from, I was scared and didn’t know what to do, I began to walk up the stairs, yelling, and banging on the next door. As I ascend the stairs six flights in all, I became less and less confused. I clutched the railing being very unsteady on my feet and literally pulled myself up the stairs.
I got to the third floor and could finally understand how to get the door open. I walked to my unit where I stood pitifully not being able to figure out how to get my keys from my pocket. I banged on the door and a co-worker, Mike looked at me through the window with such horror, his eyes were like fifty-cent pieces. The look on his face made me more frightened than I was originally. He let me in and put me in a wheel chair, where I finally looked down and my pure white shirt was totally red, fire engine red. A nurse grabbed a sheet off the nearest bed and wrapped a turban like bandage around my head, so I ascertained that’s where the blood was coming from.
Mike thought I had been stabbed while outside in the parking lot where I smoked. I worked on a psychiatric and alcohol/ drug detoxification unit at the time and when I got to the emergency room the staff there thought the “crazy people” attacked me. One of the funny things ( I have an odd sense of humor) was that the woman who’s sheet we stole was an addict and she had just come back from an outside visit with her family, she thought that the nurse believed she had drugs and was doing a room search, so needless to say she was a bit paranoid.
The final analysis was that I broke my kneecap, received eight stitches in my head behind my ear, bruised the whole right side of my face it was one big purple mass, and I chipped my tooth. Seizures are also frightening for others as well, it is difficult to watch someone have one but when people you care about walk in with blood all over them it’s difficult to grasp that they just had a seizure.
A week later, I had surgery on my knee and this put a part time worker/college student out of work for eight of the longest weeks of my life. I was not only a financial disaster but also an emotional wreck. This seizure threw me into a depression that I was not prepared for, as if anyone is prepared for depression. It’s called Post Traumatic Stress Disorder, it happens when something occurs that in some way throws you back to the earlier trauma and the symptoms resemble depression and anxiety, they are intense. When my knee healed enough to be able to go some places even though I couldn’t go to work yet, all of a sudden I would tell my girlfriend to please take me home, I would get scared that I was going to seize and I would fall again and hurt myself. It was so crippling, the knee was nothing compared to this. It was not only total loss of control but my injuries were more extensive than any I have ever received while having a seizure. I was laid up not able to walk for what seemed like forever, I didn’t go to work or even really leave the house because I couldn’t get in a car or ride my bike; I couldn’t bend my knee. My freedom was now even more altered than it had been and this was what I thought was the worst part, well besides having my first anxiety attacks ever.
That knee has had two surgeries one for a broken patella from the seizure and then arthroscopic surgery to get scar tissue and bad cartilage out, this surgery put me out of work for 9 weeks because my job was walking everywhere and there was no light duty. The next worse injuries came in 2009 when I seized while drinking coffee and I gave myself pneumonia and a ruptured disc in my neck. After having too many seizures and hitting the side of my face on something hard this was the last straw, my disc blew and it just felt like bad shoulder pain for two years and then finally I had a fusion in my neck in 2012.
I’ve always said that it would be my luck that I would be sitting on the toilet one day and seize, hit my head on the sink and that would be the end of me. They would write on my grave “She pissed her life away.” Well I’m still here and my insurance company hates me and I have metal and dead people’s bones in me and some things are removed and others will always hurt, but I am still here, so tomorrow another story.
Amy only the ignorant & uninformed react with “horror” from epilepsy.
It’s tough (for a true epileptic) not only for the seizure but the trauma of a fall.
Ideal for friend/family to help someone to the floor, but that’s not always possible!
That being said–not everyone reacts to an emergency as well as a paramedic does 🙂
You also learned that alcohol (even a eensy weensy bit lol) and anti seizure meds don’t mix.
We need a PSA run on that topic for the general public!
Keep banging out the blog as I know it’s good medicine–I’m still reading!
Thank you Greg. I appreciate all of your support. You are a good friend.