The Beaten Path: Seizures
Amy L. Kratz
On September 13, 1973, I was a child that took the same shortcut we always walked to school and I never arrived at school that day or for many to come that year. I was attacked by what I can only describe as a monster disguised as a man. This man filled with rage, stood like a wolf, waiting his prey, for a little girl, cheerfully walking to the first days of fourth grade. Unexpectedly; I saw him, he asked me something, and I stood frozen, and answered. He rushed over, picked me up, tied a rope around my throat, and beat me until I was just about dead. I somehow escaped him in the midst of my beating and hid in the overgrowth of the marshy area we called Block House Pond in Lewes, Delaware. I passed out, to be found barely alive at 6:00 p.m. that evening by the Lewes Fire Department. I survived; rather well I must add and live to tell this part of my story to you. I have lived with seizures since I was 9 years old, they are just some of the aftermath of the traumatic brain injury I acquired that day.
Seizures alone make your life a challenge, one moment to the next and not just because I used to have to a ride a bicycle everywhere, until age 38; but for a host of reasons that some may experience and others not. In reflecting on my life; I had not really dealt with the fact that I had a seizure disorder, that I was a victim of a violent crime, or that I had a Traumatic Brain Injury, TBI, until I was in my late twenties and early thirties. Even that was just the beginning of peeling the layers of hurt back to get to me, like an onion the core of me was heavily armored. I know that sounds bazaar but it took me many years to finally admit to others that I had a disability and even now I am not recognized by any agency as having a disability because I receive no services from any one entity or government for having this disability. In fact, if you met me on the street, you would not know any of this. I wanted to just believe that possibly I was super human and unaffected by it all. This form of denial worked for me as it didn’t keep me stuck in thinking about what I couldn’t do but helped me find all the possibilities life has to offer.
Victimization is yet a completely different animal like the seizures it strikes you when you are least prepared, 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 know it is happening until it’s over. Yet they share many things and most of them are about having NO control; which leads people with a nasty emotional disorder called Post Traumatic Stress Disorder or some doctors call it post seizure, PTSD, when you have it after a seizure. Trust me I know this all too well.
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. Yes that rationalization sounds odd. But there is a reason for everything or so I have come to discover. One would think that being a victim of a violent crime, having a head injury, and seizures is more, or was more justified or socially acceptable in society than being a Lesbian. But I am not always sure how true that is and wasn’t then either. People don’t understand what a person with seizures or head injuries goes through. It is a very lonely feeling even when you are surrounded by those who love you. We rarely have ever talked about what happened to US because it really did happen to all of us, not just me.
In the community I grew up in, it was known that I was a victim, suffered a TBI, and had seizures but it was still easier for me to be the true person that no one had ever met. At age 19, I came busting out of the closet ready to tell anyone, (except my family) that I was gay. 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 lesbian!” well, not really but close.
Seizures are debilitating and they make you feel vulnerable something I have never felt good about feeling. 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 make me 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. That all depended on my stress level and how well I took care of me. I haven’t had one in four years so I am riding the wave of hope, as I think we all do after every one we have. I know I always have done two things: Hoped that I would never have one again and started what I call the Seizure clock. It is the counting of hours, days, weeks, and months until unfortunately I would have one again.
I think my family and I lived like this for a long time. People used to always ask me, “How are you?” and next thing out of their mouths, “Have you had any seizures lately?” I know they meant well, they were concerned but then that would start me thinking and sometimes after talking to them almost psychosomatically, I’d have one soon after talking to them. I realized it was because all of a sudden it would start me in a cycle of worry. When I would stop thinking about them, the Seizure clock ticked away. I have tried to just live and I have gotten to point of saying, “Come what may.” I cannot worry my life away I have to many things to accomplish. Worry is useless and regret is useless, I say, “Live.” So I did. But along the way I have struggled with seizures and they have ruined my body and at times my spirit.
Receiving a head injury like this as a child gives one a better chance of fuller recovery, (I say this because you are never quite the same again), 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. Emotional healing is still happening every day. There are days I can write about my life as I am now and just sob and other days like today; when I am thrilled to be able to have the gifts I have, regardless of the circumstances I must endure.
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 looking at the ceiling, breathing heavy, sweat pouring from my body, and I would lay there thinking, “What the hell am I doing here? What am I going to do now?” I am very confused as many people with seizures are after they have one. 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 and possibly I would have hurt myself and didn’t know it until later; after waking. This is dangerous because I am alone or have been.
There have been several times I have come out of a seizure and have been 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? Who are these people? Where am I going?” Scariest thing is that they may not know you and you can’t tell them anything. 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 tonic clonic 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, as I watch the room go around or more like me going around the room.
It is like being a marionette and having strings attached to your limbs that someone else is moving. 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 have relation to anything; they are all disjointed don’t make any sense.
That day reminded me of my inability to talk when I was hospitalized after acquiring a head injury, 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 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, but never the less disturbing. 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, falling is what is so devastating. The fall is the thing that 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, a bathtub, a table, 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; (they didn’t know I had seizures, I never told anyone) 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 tenses, 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 inside to get back to work. 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 recall nothing. I must have fallen backwards down the stairs. 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 having a lot of knee pain, 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.
A man I worked with 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 after that.
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 where you were helpless and the symptoms resemble depression and anxiety and 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 before going to work 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 until I started having such bad pain in my right arm I couldn’t hold onto anything. I became weak and it was time to get it fixed, I had a fusion in my neck in 2012. This was a cake walk compared to the broken knee and I know that sounds ironic, that’s my life one big irony after another.
OK so I’m like an old house, I have faults and nothing is straight and I am poorly wired, but I still keep going and amaze myself sometimes. It’s a great day when I’m Vertical. 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.
Summing it all up: I am happy I have pushed myself to be better, not better than anyone else, just better! Against the odds I have finished college with a 4 year degree, I write a blog www.recoveryofthemind.com and I have written a book that isn’t published but will be. My greatest accomplishments aren’t overcoming TBI but in helping others and they have helped me more than they will ever realize. I have worked for 30 years helping people with developmental disabilities and mental illness.
So remember just because you have seizures you can rise above. Just take care of your emotional self which is something that took me a long time to grasp. I think that has helped me the most. Oh yeah, Laugh, at yourself if needed and Live defying the odds. Be a Force of Nature in the world, help others so you don’t focus on yourself to the point of dread. They in turn will teach you things you never knew you would understand.