I boarded the train with splendid joy and was quick to find a window seat where I took a deep breath so as to remember the moment at hand, the scenery, the people and the contagious excitement on the faces of others as well.
My excitement dwindled for a few fleeting moments when a familiar anxiety raised its ugly head .... a nagging sense and awareness that I had epilepsy had come to the front of my wakeful mind. I was quick to push back the subject from my thought process and promised I would not return to it until I was as settled in Kingston. This decision, in hindsight, was a poor decision. It was a true exercise of procrastination, denial, an irresponsible thought, and unrealistic expectations that a seizure would not happen in this early period of heightened life-experiences ahead of me.
communities displayed historical landscapes throughout the vast countryside. The communities within the Greater Montreal area were fascinating. After the departure of passengers in Montreal, the train left for Toronto and in that route it was scheduled to make a stop midway in Kingston.
The train platform in Kingston was bustling with students in an attempt to claim baggage and hailing taxi's lined up to escort these individuals to student-housing as well as to dormitories on the grounds of the various institutions-of-learning throughout the city.
I hailed a taxi and sat in the front seat to enjoy the landscape as we traveled to the heart of the city, near the campus and where I would find accommodation - or so I thought. When the taxi driver asked where I was going I stated that I was new to the city and unaware of housing options. I asked if he was aware of a home that housed students and had a vacant room(s)....there was absolute silence from the taxi driver. He looked at me and informed me that Kingston was a very active university town and it was unlikely to find a room within the parameters I was interested in finding.
Out the goodness of this city-wise taxi driver's heart he offered me the opportunity of finding lodging at the home of his sister .... the mother of a large Irish family and the head of this family was the Kingston's Chief of the City of Police.
After a good night's sleep, I was up early and walking the sidewalks and enjoying large homes with signs that they were advertising rental suites in these historic and some limestone residential houses. It was always said that "what Melanie wants, Melanie gets" and once again this concept rose to the front.
After a matter of inspecting a few homes with suites for students I came across a home that offered a one-student, large room on the secondly floor of an historic residence. The vacant room was a room that I thought I would only dream of. Since occupying a room as a student in 1965 this address has become a well-known Bed and Breakfast on Sydenham Street.
While inspecting it I felt a tremendous positive energy. Large windows with panels of stained glass and with shudders that are commonly seen in Europe opened up to a lovely back garden. Large lilac trees gave privacy to this romantic setting. One could only imagine what spring would bring.
As days passed I became acquainted with the whereabouts of buildings of interest on campus and with community programs. There was every imaginable activity made accessible to a young student....everything from synchronized swimming to participation in a community players groups.
Synchronized swimming was the first extra-curricular activity I added to my participation list as well as taking a part in a local player's guild.
After a month of familiarizing myself with ambitious university courses, the inevitable occurred. While in the pool and practicing with the synchronized swimming team, I experienced a grand mal seizure and woke up in the emergency room of a near-by teaching hospital. After the ordeal was over, I could not believe that this occurred at what I considered to be the worst place and time. I suspect a lengthy post-seizure sleep enabled me to make some sense of what had occurred and who and why there were medical personnel surrounding my bed. There was more commotion than usual after a seizure due to the fact that fluid had been found in one lung.
As my gaze widened, I could sort out some in white coats and recognized the medical student I was dating standing with peers at the end of my bed. All, I could think of was that "my secret" was disclosed and I had a lot of explaining was now on my plate
After that incident, I was fully prepared to experience relationships ending as well as loosing the friends I had made on the swim team. Additionally, I would have to face the fact that participation on the university synchronized swim team would come to an end.
To my amazement, my new friends stuck by me and from that I had reason to think that the maturity factor of these new friends as something I had not taken into consideration. I found great comfort in their on-going support.
Life as a student in Kingston remains a period of time in which many greatest life-friendships and memories were formed.
Unfortunately, my bubble burst just months before graduation .... I was diagnosed with Meniere's Disease, Labyrinthitis and Otosclerosis (diseases of the middle and inner ear). I was gradually loosing my hearing and dizziness was problematic. Dehydration was a constant concern as nausea and vomiting episodes were frequent.
The first job in my new career was located at the general hospital in Fredericton, New Brunswick --- it was a one-year commitment and a condition of my university scholarship. Once established, II took a week off from my job which was best described as the Chief Librarian of the Medical Information Department, to have a Stapedectomy. The stapes bone had become immobile and in part, causing hearing loss. The immediate post operative course was tumultuous - I had experienced a grand mal seizure which caused the implanted wire (stapes replacement) to dislodge and in turn it caused a fracture of the oval window - a membrane which transmits sound waves to the inner ear.
After recuperating from the stapes surgery, it was necessary to travel to Los Angeles for neurosurgery in hopes a procedure would relieve the vertigo, nausea, balance disorder and further decline in hearing (all secondary to Meniere's Disease of the inner ear). That surgery went went well in the immediate post operative period however a post-operative complication led to a hemorrhage and meningitis - seizures were frequent in the recuperation stage of that surgical period.
Rather than immediately returning to Eastern Canada, I spent my recuperation period with my twin sister, Melodie at her home in British Columbia. In addition to my desire to spend some bonding time with her, I knew Melodie, a nurse, would be able to help manage any further post surgery complications.
My stay with Melodie and her fiance, Geoff B. Clark, for a short while prior to my returning to the east coast, was well-planned as seizures did become a problem and Melodie effectively took control of medical matters. Her nursing skills were first called upon when she was preparing for a dinner meal - a moment in which I was feeling dizzy and disorientated. From Melodie's perspective, as she worked in the kitchen, recognized a "strange look" on my face that she had seen before convulsions. A seizure did ensure and was prolonged. It translated to a trip to the nearest city for treatment.
In the period of time spent with Melodie and Geoff, I gained an incredible respect for the magnificent mountains and coastline of Vancouver Island. The mountains provided me with an incredible positive energy, essential strength and enhanced my love for life itself. It was an environment in which I felt I was meant to live and thrive.
Additionally, and in a matter of weeks, I fell in love with a friend of Geoff's. We married after a six-week courtship. In keeping with life moving at a horrendous pace, I did not find the "right" time to sit down with my new husband and explain that I had epilepsy. Once again avoidance, procrastination, denial and fear became a heavy weight on my shoulders. In addition to the previous emotions, the fear of of abandonment by my husband was growing by the day.
After Melodie and Geoff's wedding in Nova Scotia and upon my return to Vancouver Island after being married in my hometown of Bridgewater Nova Scotia, I was fortunate to find employment at a local hospital in the same town where Melodie and Geoff lived, namely of Comox.
On the subject of seizures ....I found confidence and respect on one particular physician working at the same hospital and shared my seizure issues with him. He referred me to a neurologist and after an EEG, this specialist asked that my husband join me in a meeting following test result outcomes. The test showed irregularities and supported the diagnosis of epilepsy. It was not the time or place that I had wanted to share this with my husband. The neurologist instructed my husband on the rules that were in place with respect to driving a car and much more.
It was a somber drive home ... little was said and I could only speculate that my husband was trying to process what he had heard and the prospect upon matters of a future before us. The outcome of that meeting with the neurologist was not mentioned again for a two-week period and our relationship was never the same from that moment on.
My husband had expressed his wish to change jobs and while he actively searched for new employment it was decided that I would move to the Greater Vancouver area and live and work from the location of his parents home until he found a new job in Vancouver.
I was very fortunate to find work in a teaching hospital and the position was considered as one of the best in the province by my peers. It was an ideal time to be actively exploring a new and busy work place which best describes the Royal Columbian Hospital, New Westminster (Greater Vancouver Area), British Columbia. Despite a sense that my marriage would not last, I gained a new confidence that I had never before experienced. As my career quickly advanced to levels beyond my expectation, I had absolutely no doubt that I could sustain a high-level independent life and all under my own steam.
The marriage did last a few additional years however there was little present in terms of love, support, respect and compassion. Marital abuse eventually entered our homeplace.
With my new inner strength, I was able to put away the fact that I did not have to endure marital abuse all for the want to be socializing in the couples arena. I no longer sensed the need to be married and accept abusive behaviours. In my new empowered self I also realized that I had the capacity of meeting someone who I would someday like to settle down with. Previously I was of the thought that no one would want to marry an individual with epilepsy. By this time the fact that I had epilepsy was well known by friends - old and new - and it certainly did not deter any relationships.....in fact, I had more dates and new friends than I could manage.
In the latter portion of our marriage we did enjoy camping events, trips to the sunny south, skiing holidays. In a last ditch effort to salvage my marriage, I put aside the element of personal safety and became a rather ambitious skier. I damaged my knees when having seizures and these required three surgical procedures to correct. I worked hard in physiotherapy sessions to regain strength in my legs and was back on the slops in record time. Once I had recovered I took up the sport of skiing even more seriously and began night skiing on the local mountain terrain.
My obsession and pleasure to ski grew with every day spent on the mountain slop and trails. My circle of friends continually expanded and my interest in skiing became my passion and in retrospect, was an activity to release tension, gain self-confidence, enjoy new comforts and personal growth grew with every skiing event.
In the time of healing of damaged knees, I reluctantly asked my family physician if he would refer me to a well-known neurologist whose primary interest was epilepsy. Also in the time of healing I took time to reflect upon my personal history of seizures dating back to my earliest memories of seizure events. I was absolutely astounded at what I could remember and of the details surround each occurrence. One memory led to another and the exercise was one of re-living my health's past as painful as memories came forward. Having recalled what I managed to remember made me think how many memories there are in the whole scheme of the past., I fully expect my subconscious is blocking many events. I suspect those which I have recalled are seizures in which, for the most part, are remembered due to the height of humiliation of a seizure events........the main culprits of humiliation and embarrassment was that of incontinence and the fact that an episode drew attention to myself, .... a shy individual in younger years..
My first recall of childhood seizures was at the approximate age of four years.....a time when visiting the next door neighbour, I fell down a flight of stairs.....a fall, that did not have a complete picture and the word seizure was never heard. The fall was thought to have been from a round marble being on the stairs. I did not recall seeing a marble but do recall waking up in my Dad's arms as he was carrying me home. I remember being very tired and put to bed with my clothes still on.....wet pants did not go unnoticed by parents and to my surprise seemed of little significance to them. It was certainly an embarrassment and a matter of concern to me.
A second event also did not have a full story behind it or at least to my knowledge, such is the case. On that occasion I was six years of age and standing in line at school - waiting for the school bell to ring and classes to commence. My recall of this event was that of waking up in a classroom that was unfamiliar and lying on the top of a desk seemed most peculiar. I could hear a teacher in the background speaking with Mother on the telephone and arrangements were made for her to come to the school and take me home. I suspect that event is recalled due to the fact that I had once again experienced incontinence and so incredibly humiliated......to the point I did not want to return to school the next day.
Middle school, was not without events of seizure and again likely recalled due to the fact that incontinence was again an element in the picture. I was among friends and students of all middle school grades as we left the building at the end of the day. Memory goes back to the gathering of concerned teachers and what seemed like seconds later my Godfather, a physician, was present and in in his good humor lifted my shame and embarrassment. He drove me home and encouraged me to put my head down and sleep. I would awake for moments at a time when he held my hand to ensure I was alright and tested this by having me tell him a nursery rhyme. It was reassuring to see his cherry face and hear his unique deep voice.
At the age of approx. 12 years, I recall waking up to having wet my bed and compelled to hide this incident. I remembered Mother showing me how the machine worked just months earlier and as I rushed to the basement level of the house I prayed that I would be able to put the soiled bedding in the washer. At the breakfast table, Mother praised me for doing my own wash. All went well until I sat down to put my shoes on and fell to the floor as the need to sleep got the best of me.
"Moving on to High School": I was an active teen and participated in a long list of events, sports, and community activities. My participation in Girl Guides was that of great commitment and achievement were numerous.
On the day in which I was to receive my Canada cord (Gold Cord) - the highest award given in the Guiding Community. A seizure ended my " fifeteen minutes of fame". I had obtained the highest number of points among four individuals receiving their Gold Cords on the same evening at a ceremony at a local church. Being the highest scorer, I was asked to make an address on behalf of Canadian recipients......I was thrilled to be asked and well prepared for the event however all came to an end when I had a prolonged seizure at the family breakfast table on the morning of the award ceremony.
That day began with a joy filled family breakfastnjoying breakfast. All happy hearts changed in the fraction of a second -- I experienced a seizure and woke up lying on the living room floor only to see some very concerned expressions. Melodie, my protector, was so concerned that she was in tears ...seeing this was an indication that something went very wrong. I laid on the floor until a near-by physician came in to assess the situation. In his calming ways he was able to re-assure my parents and siblings. He suggested I be put to bed and allowed to sleep for the rest of the day. He advised that I not give the address that I had prepared and that I could attend as an observer in the audience--sitting beside a Guide Leader.
Photo: Melanie Elliott, Guide; Frances Elliott, Guide Captain; Melodie Elliott, Guide
Sitting front row cente,r only to hearing my words being spoke by a peer, was heart breaking. I sensed my parents were very anxious and once the awards were distributed, the Elliott's went straight home.
That particular year ended with a fall down a stairwell in a location of my high school years. I found myself asking if the embarrassment...would it every truly end? !!!
As I moved on from my reflections of seizure activity I skipped to an event that was life-changing and beyond anyone's imagination. In the late 1980's , I had been seizure for the time required by the Motor Vehicle Branch and a car licence was ensued...oh such joy, freedom and a sense of life-progress.
I took a weekend off and traveled to the upper Fraser Valley where I spent a few days with my twin. As I drove through the valley, I saw a bi-plane crop dusting and was fascinated by his ability to maneuver around electrical-support poles.....I pulled off the highway and into the farmer's field and with the top down of my car I had a full view of the activity above. Unfortunately, I was not aware of the toxic nature of the pesticide that was being sprayed and was directly exposed to this chemical that affected the central nervous system.
To make a long story short the exposure caused me to be coma state and diagnosed with toxic encephalitis. The long term effects were devastating - physically and cognitively. To this day I remain wheelchair dependent and with an inability to manage any type of mathematical skill (a cognitive element). the vestibular portion of my one hearing ear was damaged and this left me with a balance disorder. Unilateral neglect, an inability to understand concepts, short term memory loss and much more remain my demons.
I received weekly rehabilitation guidance and direction for a four-year period. This element of my recovery was essential as it enabled me to live a supported independent lifestyle.
In my efforts to remain independent, there were seizure breaks which were a matter of concern by physicians and community health professionals. One seizure, in particular, occurred while I was test driving a small motorcycle in a friends back yard. A seizure caused me to lose control of the motorbike and collided with a cherry tree and electrically-charged fence.
My seizures issues were followed up by medical specialists in Halifax, ... a team who were at a loss as to what dosages and combination of medications would best control the seizure activity. They consulted a neurologist at the Monteral Neurological Institute who suggested I travel to Montreal for an extensive assessment and recommendtions regarding future treatment.
The outcome of that assessment was a positive experience and seizure frequency was greatly reduced. I felt the infrequence of seizures, in this period, were such that I had confidence to rejoin an equestrian therapeutic riding program....a program that was cherished and one I thought would never again be my privilege.
Now, at the age of 68 years young, I look back at the circle of incredible supportive family members, enabling friends and committed physicians in the field of neurology who have enabled me to live a very productive and purposeful life. For these individuals, I am blessed !!!
My message for those individuals who experience the neurological condition of epilepsy, I urge you to share your situation with those in your family circle, friends and professionals. It is unjust to remain silent only to have a seizure in their presence. Knowing you have epilepsy gives them the tools needed to assist you from becoming unduly injured should they be present. Not being aware of the condition leaves them with a sense of helplessness and it is not uncommon that the assisting individual blames himself for a seizure occurring. They become a victim of your seizure.
Keeping healthy by getting your required sleep, exercise, eating well and learning how to cope with physical and mental stress will greatly reduce your chances of experiencing seizures unnecessarily.
Be Well, Remain Well
Nightingale
