For me, epilepsy has always been a roller coaster - there are doctors who say you have it and doctors who insist you don't; different medications to try or no medications at all; and just when you think you've got things under control, there's another loop in the track and your back at the beginning of the ride.
Looking back at my medical history, my current neurologist thinks that I have probably always had a seizure disorder but that it went untreated because the seizures were infrequent until recently. I was born on August 9, 1971 in Casper, Wyoming. The medical records show fetal distress and a drop in vitals shortly before my birth. Hours after birth I suffered a seizure in my mother's arms which the doctors attributed to the difficult birth.
For years nothing further happened to indicate I might have a problem. In fact, my intelligence was above average and my academic progress excellent. I went to pre-school at age three in Panama, where they do not have minimum age requirements for schooling, and by the time I entered first grade I read and understood adult books.
Half way through the second grade my father was transferred to Korea and we returned here to Montrose to live with my grandparents for a year. My second grade teacher was first to notice those annoying little lapses where I seemed to be daydreaming or not paying attention. About this time I also began suffering unusual difficulties with math. Not only could I not add and subtract correctly but I also lacked the ability to read the numbers properly and remember them. Hard science followed a similar pattern; I simply couldn't understand what was going on. Even so, no one suspected that I had a medical problem. The school nurse suggested an eye examination (it turned out I did indeed need glasses) and the teacher sent me to the first grade room for remedial math and science.
At the end of my second grade year, my father returned from Korea and was transferred to Fort Dix, New Jersey. We made the trip by car and when we got there discovered that we had no quarters to live in. Since my dad hadn't planned on spending the night elsewhere, all we had money for was a dirty one room hotel that had roaches in it. It was probably here that I contracted the viral meningitis. My father had to report for duty so we were shipped off to Buffalo to live with his mother for a while.
This school system seemed no different from the previous one. My lack of ability in math and science was quickly noted, as was my advanced abilities in reading and writing. In this school I went to the resource room for math and science, to the six grade room for reading and writing, and remained in the third grade room for other subjects. To this was added a visit to the school councellor for the daydreaming. He didn't learn much about the cause of my daydreaming but he sure learned a lot about being an army brat!
I don't clearly remember the onset of the meningitis because of the fever, but I do remember an argument over my head between my grandmother, my mother, and a boyfriend of my father's sister. It seemed that my grandmother thought I was faking it to get attention and my mother and the boyfriend thought I should be taken to the hospital. My grandmother refused to call an ambulance and I was driven to the hospital in the boyfriend's car. In the hospital emergency room, they asked me to curl up in a ball so they could get a spinal tap. It hurt so bad I couldn't uncurl my body right away and I remember someone saying something about the fluid being white. I was then transferred by ambulance to the Childern's Hospital.
No treatment for meningitis existed at the time and all they could do was monitor and treat symptoms. I'm told that because the doctors thought I would die anyway, they neglected to control the fever that would leave my brain scarred on the left side and act as a catalyst to my epilepsy. I remained comatose in critcal condition for four days and on the fifth day suddenly awakened. Two weeks later, they let me go home. Shortly afterwards my father arrived to tell us we now had quarters and to take us back to the army base.
I suffered my first recognizable grand mal at Christmas 1979. My sister and I were sleeping on cots in the living room because my grandparents had driven out from Montrose to see us and were sleeping in our room. It had snowed, something which rarely occured that close to sea level, and my father sought to surprise me by bringing some in. Apparently it dripped on my cheek and the cold shock produced a seizure. Since I woke up emmediately afterwards and there were no reoccurences, my parents didn't take me to the doctor.
I suffered another grand mal in the spring of 1980. My mother had turned on the bedroom light while I was sleeping so that she could check on my younger sister, who liked to sleep *under* the bed instead of on it. The light triggered a seizure and I began to shake. This time she called an ambulance. All I remember of the incident was waking to find two strange men bending over me. In the emergency room, an EEG was taken (the old kind with the pins they actually stick into your head - UGH!) which turned up normal. The physician on duty, more used to soldiers than children, suggested that my parents check for illegal drug usage.
About this time, other effects of the meningitis made themselves known. In three months I grew from the height of a normal 10 year old to my full adult height. Bone age studies showed bone development to be that of a fourteen year old. My metabolism increased to accomodate the sudden growth and then did not slow down. Needless to say, I gained a lot of weight. Thyroid and pituitary studies showed nothing, as did the skull x-rays and further EEGs.
My father died in 1982 and we returned home to live in Montrose. I joined the band and began going on trips with them. Something weird always seemed to happend on these trips. In the period of time before our performance, I could fell time beginning to distort or slow down. It became hard to understand directions and I would feel closed in. After the performance, I would lose consciousness, sometimes shaking sometimes not. My bandmates were surprisingly cool about it; it was just part of me being me. They always made sure that I didn't hit my head and that I had a place to sleep afterwards. Only once did I come to grief; the director thought I had fainted from hunger and shoved a candy bar into my mouth. I never told my mother about these episodes because I thought she would make me quit the band.
When I went away to college in 1989 the episodes continued. I would leave my dormitory for class and end up downtown with no knowledge of how I had gotten there or security would find me sitting outside fiddling with my clothes and staring into space. Once I wandered into a local high school and had a grand mal. An ambulance was called and I was taken to the hospital. Since my mother lived 60 miles away, there was no one to call. The physician on duty was impatient and hurried. He called my resident assistant and said there was nothing wrong with me, I just needed councelling for an alternative lifestyle. In December, I was asked to leave the dormitories because I had become "a hazard and a disruptive influence." I continued going to school for another semester, commuting back and forth and working nights at Pizza Hut as a cook.
In the spring of 1990 I suffered another grand mal at my home. My mother called the ambulance and I was rushed to the hospital. I remember coming out of it just enough to see the lights of the tunnel leading to the emergency room overhead. My family physician diagnosed epilepsy and referred me to a neurologist in Grand Junction. After several EEGs and a CT scan, the neurologist told me that I had scarring on the left temporal lobe as a result of the meningitis and that was what had caused the seizures. He didn't explain what epilepsy was or how it worked so I was left afraid and in the dark. As far as I was concerned, I alone had this embarassing disease that was ruining my life.
While the neurologist played with my Dilantin dosage over the phone, the seizures continued. Once while at work I left the building, got in my car, and drove it into a telephone pole in the corn field behind the resteraunt. Another time I wandered out the front door, across the highway, into an irrigation ditch, and ended up in front of someone's trailer. The sheriff's department and my grandfather escorted me home.
In January of 1992 I suffered another seizure at work and fell on top of another employee. The following week, the owner of the resteraunt called me in an dismissed me on the grounds that "customers don't want to be frightened by people like you." I filed civil suit against the company and won a $500 settlement---approximately half of what they owed me in back wages---but did not get my job back. To this date I am still considered a poor employment risk because of the bad recommendation the owner entered on my employment record. The only good resulting from this incident was meeting my husband.
In February of 1993 I married and we applied to Fort Lewis College (it was the only school in the state offering both our degrees) and were accepted. I clearly marked on my application that I suffered from epilepsy and even talked with the housing office and the music department about it. I was assured that no one had any problem with my condition. I also took the precaution of transferring my medical records to their health center and speaking with the security personnel.
By this time the neurologist had me on 1500 mg of Dilantin a day and I wasn't feeling very well. Food tasted and smelled awful; my gums bled, my teeth came loose, and my hair began to fall out. My skin acquired a nasty yellow tinge. In April of 1994 we scheduled an appointment with the neurologist to discuss a change of medication. He seemed more interested in impressing the pretty young intern he had with him than in taking care of my needs. I was assured that my symptoms were psychosomatic and blood levels showed no toxicity. Indeed, he went so far as to say I was suffering no seizures at all and that they were actually "temper tantrums". At this point, I stormed out of his office and refused to go back.
In September of 1994 I suffered a seizure while playing with the band at an out of town football game and wandered away. The director made no attempt to check on me or to see if I was all right. When my husband showed up looking for me, the director had security search him for concealed weapons and then had him thrown out. He (the band director) then left for Durango with the band, never bothering to look for me. Fortunately, I had been found by a doctor who recognized seizure symptoms and was able to piece together where I belonged. The doctor too was stopped at the gates and barred from entering. I had a second seizure while he was trying to find my husband. EMTs on the scene were not allowed to render aid and my husband had to drive 45 minutes back to Durango with me seizing all the way. The next day I was called into the office of the head of the music department and banned from further participation in the band. I was also told I would not be allowed to pursue my major any further.
I filed a complaint with the college's Affirmative Actions division. They insisted I appoint a student as my advocate and refused to allow me to call in the school disabilities councellor. I appointed my best friend and neighbor to serve on the hearing committee. In November of 1994 my friend, her husband, and their baby were accused of threatening the life of the band director and suspended. The suspension was dropped only because the charges also included their nine month old son. On November 17th, I was ambushed by several music students and beaten as punishment for filing the complaint. I was able to identify one of the students but school security refused to interview him because he had an alibi. We later learned that his alibi was false; he claimed to have been in the computer labs but they had no record of him being there and his ID was not on file. The head of security attributed my beating to "a temper tantrum or a seizure." By the end of the semester all the band students had been told that my epilepsy was contagious and no one would sit near me. I was again asked to leave the music department and did so under pressure and threat of expulsion.
In August of 1995 my friend who had been involved with the hearing and her husband were forced to leave college. The suspension had sufficiently messed up their grades so that they were no longer eligible to attend. During this time I ran out of medication and the college would not assist with a refill. The neurologist in Durango refused to see me or issue a refill once she learned I had no insurance. My seizures once more raged out of control. After being found by security outside with no clothes on and after finding me banging my head agaisnt the locked apartment door, housing attempted to evict us from the apartment. They desisted only after a great deal of persuasion. We were finally able to get an appointment at the University of Colorado's neurology clinic and get my seizures back under control. The neurologist there assured me that yes, I did have a seizure disorder and that it could be controlled. He reduced the Dilantin to 600 mg and added phenobarbitol.
The phenobarbitol produced a profound change for the worse in my personality. Frequency of seizures decreased but the ones I suffered were excessively violent. I would run at people in a rage, attacking them, or cry uncontrollably for hours on end. Sometimes I hurt myself and occasionally I suffered hallucinations. Once I cut myself with a knife, thinking I was chopping up snakes. With the neurology clinic so far away and no means of making long distance calls, I decided I would just have to ride it out.
That summer was one of the worst I ever experienced. The college over booked their dormitories and assigned unmarried freshmen to live in the married student housing complex. They created quite a bit of noise which interferred with my studies and lowered my seizure threshold. We had complained about the noise several times, which is why I suppose they called the police when I suffered a seizure on December 4, 1995.
I had been typing a final at the computer when I suffered a really bad complex partial seizure. I was screaming, throwing things, waving my arms around, and pinching myself. I blacked out in a narrow place between the couch and the entrance to the kitchen, falling into a garbage can and bloodying my nose (or it could have been caused by my high blood pressure, we never were sure) The police arrived to find me in a disoriented state with my husband trying to clean me up and arrested him for domestic violence. This additional stress triggered a cluster of seizures. I panicked, tried to run from all the people, and fell. An officer grabbed me by the hair, threw me to the ground, and slapped handcuffs on me "for my own protection." When I told them I was epileptic and suffering a seizure he said, "Be quiet or you'll get some more." I was kicked into submission and stood upon. I suffered a grand mal while in handcuffs. The police released me when the disabilities councellor showed up and made them stop. Later I needed to go to the emergency room because of the injuries inflicted and was escorted there at gunpoint. They made it clear that "if I pulled anything, he would shoot me." I listened to how grateful I should be for them helping me at all and how dangerous I was and how he would love to shoot me all the way to the hospital.
At the hospital, I was treated for a lower back strain, abrasions, bruises, and cuts from the handcuffs. I spent the night alone in my apartment because no one was willing to stay with a "dangerous epileptic." Luckily, if I suffered any more seizures they occured while I was sleeping. The next day two police appeared at my door and issued two summons and complaints- one for attempted assault on an officer and one for obstructing arrest. They also stayed behind in the bushes and recorded in their report a private conversation between my mother and I. Because of this incident, both my husband and I were forced to take incompletes for the semester. I still have one incomplete resulting from that incident that will become a failing grade now due to other incidents.
We fled to Montrose for the holidays and when we returned, housing again tried to evict us from the apartment. This time I took issue with the housing director and asked him if the action being taken was because I have epilepsy. He said no, it was because of the way my epilepsy influenced the behavior of my husband. I suffered another seizure right there in his office and had to be taken to the health center. Housing desisted with the eviction when all charges against my husband and I were dropped and the cases thrown out of court. Difficulty moving my shoulders and wrists prompted a visit to the health center. I had to wear a brace on one wrist for three months to support the damaged tendons and x rays revealed the being handcuffed while in seizure state had caused my rotator cuff to tear.
For a time, all proceeded well. Then I began having problems with a professor in the Teacher Education department. He was teaching the Exceptional Children class and told my classmates that epileptics were stupid and violent. His written information listed epilepsy as a mental disorder and a symptom of a spoiled child. I confronted him with this and he got hostile. Efforts to change the curriculum failed as well. He did agree to let me address the class and give them the correct information. I thought everything was all right but in August of 1996 my student teaching position suddenly was no longer available. The reason given was that the administration in that school district had collapsed. However, no one seemed willing to find me a new placement and the Dean expressed the idea that someone with epilepsy should not serve in a classroom.
September 2nd 1996 I suffered another violent seizure, probably a direct result of the stress of not having a placement for the fall. My husband called my boss at work to come help with the seizure and tried to shock me out of it by cutting himself in the throat with a knife but the police arrived before my boss. they were warned to approach with caution because of my fear of police and because a medical condition existed and ignored the warning. I panicked and ran to my residence director's home screaming that I was seizing and needed help. Police threw me to the ground, battered my head with a knight stick, and handcuffed me. the seizure progressed to grand mal and I began choking. Police refused to turn me over, telling the bystanders that it was a game I was playing. One bystander disobeyed them and turned me over so the saliva would run out of my mouth.
When the EMTs arrived on scene my heart rate was 166 beats per minute and my blood pressure was so high it didn't register on the cuff. I had been in seizure for fifteen minutes. I started calling for my pills and one EMT spit in my face, saying "Yeah, I just BET you want your pills." They refused to transport me, saying I was dangerous. The police took me to the hospital, wanting to prove I was faking a seizure. At the hospital I was diagnosed as having status epilepticus and given massive doses of phenobarbitol, haldol, and dilantin. The doctor wanted to keep me for observation but the police insisted on taking me to jail.
I don't remember much after that. The holding cell they put me in was lightless and windowless, cold, and had standing water on the floor. I was held here over an hour before I was allowed to make my phone call. Then they put me in an isolation cell. I drifted in and out of sleep for most of the next day, as is typical for me when I am recovering from a seizure. At one point, the matron came and got me and I was led to the infirmary where the doctor issued my Dilantin and sent out for the phenobarbitol. It was delivered to my cell later.
That afternoon I bonded out and went back to the apartment to get hte bail money. My mother was there, something I hadn't expected because no one had come to see me at the jail. I later learned that they had refused to let anyone see me or talk to me on the phone. Meanwhile, my husband had notified the lawyer and they had gone to court to secure my release. The judge also signed a release of the restraining order so I could be with my husband. While we were tying up our affairs at work, the manager informed us that the police had been there looking for us and if they found us together we would both be thrown in jail and the bail set at $30,000. John raced back to the courthouse to obtain a copy of the restraining order release so we wouldn't have to worry about it. I have since had to carry that piece of paper with me at all times.
When we got back to the apartment, the college housing office called and gave us notice of eviction. Since we had decided to leave anyway, we were already packing. Within three days we moved all of our things into the trailer down in Montrose. A court date was set for September 24th but we didn't have to appear. On October 11th I received notice from the Education Department at the college that my only options were withdrawal of failure in my student teaching. No explanation was attached. On October 12th I received a notice from the state of Colorado banning any further progress toward my certificate until these charges had been cleared up. I also received a notice of expulsion from the Dean of Students at Fort Lewis College stating the reason as a breach of the student conduct code - the part about being a danger to self and others.
On November 12th the pretrial conference was held and another court date of January 14th set in order to allow both parties to do more research. The outlook is good. The DA trying the case now recognizes that a major breach of hte ADA has occured and will likely drop the charges. After the criminal case has been dealt with, our lawyer will amend the original civil suit to include the entire city of Durango and the whole college.
Note: At my last contact with Francine, she was on new medication which had greatly improved her seizure control and was also living in a new environment which was much less stressful. She was very happy with her situation.