SECRET
(please excuse spelling and grammar errors - author is visually impaired)
The Internet resources with regards to Epilepsy
is bottomless and the author suspects that in some way a new diagnosis of epilepsy would cause chaos in all aspects of one's life. With a sense of panic they would likely try and digest information from various sources. Individuals who are facing this for the first time describe the diagnosis as one that they regard as a sense of "displacement".
The author has purposely neglected the role of family with this issue and recognizes that the topic is worth a separate blog entry.
As an epileptic Melanie Elliott was most fortunate in the efforts of her parents who encouraged her to participate in 90% of the activities of her twin. For years Melanie was left without an understanding as to why she was restricted and her twin not. Melanie could not find the missing peace to the puzzle. In hindsight, their (Parents) dilemma was that of wanting Melanie to be "like" everyone else and without a bias or label and a free and happy teen with a strong hope and determination toward goals she set for herself ... her life goals were set long before graduation day.
In the year prior to Melanie's leaving home for studies in Ontario, the answer to why" her parents were over-protective, after Melanie had a seizure, continued to be a mystery. She knew she was different however could not in any manner explain it. The light to this mystery came to be known on the day in which Melanie's twin, Melodie and herself were to receive a Canada Cord (Guiding).
Melanie experienced a rather severe seizure while at the breakfast table the morning of the reward receiption. Having a seizure was an event that had occurred in the past however Melanie was perhaps too young to know what questions to ask. She had looked forward to the event of receiving a Canada Cord for "years" and to be chosen as the spokesperson of those who were Canada Cord recipients was the icing on the cake.
The day after the reception, Melanie's Godfather came for dinner and asked if he could speak with Melanie in private. He explained that her "seizures" were due to a condition called "epilepsy". Her first thought was -- oh, I am in trouble. Her Godfather provided Melanie with some literature regarding epilepsy....she felt a sense of validation as she read through the material.. The more he spoke, the more questions Melanie had and when reaching a point where confusion began to set in, her Godfather suggested that he return tomorrow and in the meantime asked that Melanie no longer carry any shame after a seizure occurs. She continued to address the "silence issue" which again was a relief - prior to that opportunity it was a subject not to be spoken about within the family. For as long as melanie could remember, parents always avoided the subject when teachers came forth with questions after an unexplained fall etc.. The guilt Melanie felt was an offshoot from Parents who obviously had a need to keep this behind the front door.....and for no one to see or suspect.
Melanie had not hurt herself during the seizure of the award day. Fatigue was her only complaint. She begged her Godfather to allow her to attend the reception that evening and accepted the concession that she could attend the ceremony however as an observer only. Such was a hard pill to swallow. Additonally, the speech that Melanie had worked on for sometime was spoken by another Canada Cord recipient. Melanie later reported that it did not capture their excitement and pride when hearing and seeing it delivered by another -- there was little to no annimation.
After the Guiding event that night, Melanie's parents decided it was time for her to know what the "spells" were all about. In their description came a warning to never tell anyone that she had this diagnosis. Even her Godfather suggested she go about life as if nothing happened. He did tell her that it this could leave her in a state of being vulnerable however softened that with the awarenes of her inner strength. He assured me that I would likely "grow out of this". After a few days of contemplation, she began to restock her self worth, esteem and confidence.
One year later Melanie made application to three nursing schools and was turned down by all three...She did not know where to turn as this was a career she had dreamed about all her childhood years. Godfather re-assured her that there were a lot more occupations for women in the acute care hospital setting than the role of a nurse. When he became aware of my disappointments he invited her for a chat over some ice cream and soda....they met to discuss Melanie's career choices. My Godfather spoke of several medical-related positions in the acute care hospital setting and with a sense of enthusiasm and joy, he explained that there is a long list of career options that would encompass her talent, passions and abilities. His willingness to share this information was combined with his a great dose of hope. She did continue to have some anxiety with the disclosure of having epilepsy. Upon reflection of the seizure issue, she cautiously asked how she would manage meeting the criteria of any teaching medical institution with the word epilepsy on an applicaiton. With a little more reassurance she did return to her hope and spirited energy. That very week Melanie applied for enrollment at a university in Kingston Ontario. She had signed up for a career in Medical Library Science...and chose not to disclose her health issue.
Once settled and attending classes, Melanie took some time out in her studies and joined a synchronized swim team. On the application form she once again purposely did not check the box indicating a history of seizures as she suspected it would indicate an immediate closure of her application. The inevitable did happen during a routine practice... a seizure occurred while in the water and the outcome was a near drowning. That ended her enjoyment at the university pool....yes, she was banned from the use of the pool. Once she was better to handle the frustration and a pity party, she came to realize that this would not have occurred if she had been truthful in an application to join the synchronized team and in future years, disclosure became a topic of inner tension.
After graduation as a Medical Libarian and present in the "real world", confidentiality quickly became a matter in need of protection. Her career interests placed her in acute-care, teaching hospital settings. After some comfort in researching, the depth and confidentality details in which hospital employees and employers are expected to abide by was reassuring However, once again in her intimidation and passion to work at a particular location, the topic of confidentiality and lack of her disclosing her state of epilepsy, she was faced with a huge dilemma. During another bout of convulsions and an admission to the hospital in which I worked....her medical history did not reflect she was prone to seizures. The lack of this information was certainly to her determent and to this day the outcome of the seizures was damage to cognitive abilities...permanent brain damage.
After being discharged and having rested at her residence for approximately three weeks, , she was called into the office of the facilitie's Human Resources Department (at her workplace) and upon her arrival she was stunned to see the Medical Director of the Hospital, her Supervisor, a Human Resources staff member, Union Representative and a Nursing Consultant.....all sitting around a Board Room table. As she took her seat she noticed a medical record on top of the filing cabinet and looked away only to realize that the record was that of herself. This image discredited what she believed to be entwined by the hospital's mandate.
Melanie's medical record was passed around the table - some stopping to read the content and others did not as much as open the cover.....the latter was in respect to privacy, professionalism, ethics and awareness of basic dignity.
When that meeting ended she immediately recognized that her personal life path was destroyed and she was faced with the need for a new beginning. Her body was still getting use to a change of medication and with this taking place she continued to feel unwell.....such prevented her from following up on the matter with the Human Rights Commission.
The author's point in this story is for the purpose of sending a message to youth to put all their cards on the table and disclose their seizure tendency resulting from epilepsy or other brain pathology. Disclosue when approaching the topic of driving is always a moment of total inner chaos. To point out that the rules pertaining to the operation of a vehicle by an individual with seizures is put in place for a well defined reason. Qualified individuals from several spectrums have drawn up rules of exception and compassionately develop driving policies with great thought behind them. To ignore these rules in the presence of a seizure disorder is somewhat parallel to an individual who is intoxicated -- as in their minds - a car accident happens only to others.
There is some good news with respect to driving - the length of time of "no-seizure activity" is much more sensitive for the individual with a history of seizures. Additionally, and in the presence of a normal electroencephalogram (EEG) -- a procedure in which electrodes are place on the scalp and the brain's activity is reflected on a graph. -- there is once again a window to improvement and is also used as a measuring tool for those patients wanting permission to operate a vehicle.
The rapid development of new medications for the purpose of reducing seizures is a positive point for an individual with epilepsy as well.
The author also stress the need for the person labelled with epilepsy or other seizurte disorder to carry personal identification at all times.
Be Safe - My Friends
Nightingale
No comments:
Post a Comment