Surviving my MS life survey…just saying!
Surviving my circumstances and finally learning to ‘ACCEPT’ them is the defining imperative of my personal MS journey!
Being born in 1954, there wasn’t much awareness in the general front line of ‘family doctors’ and ‘community hospitals’ of what Multiple Sclerosis performed and how it presented itself! So, when I began displaying symptoms at around the age of six, MS wasn’t even discussed. This was still a disease at that time that couldn’t even be ‘confirmed’ except for by autopsy…and thus was misdiagnosed much more than it ‘could’ be affirmed as a diagnosis…seriously!
It wouldn’t be until the 1990’s, when the medical field focused on the ‘Decade of the Brain’…with the introduction of the MRI and the first real ‘Disease Modifying Drugs’ directly intended for MS…that it became even possible to set firm criteria to determine a more accurate ‘confirmed’ diagnosis…without dying first…so much more convenient for developing a healthcare plan with a patient being able to be diagnosed and to also be alive…just saying!
My MS life journey is a fine example of falling in the crack of having a chronic illness before there were reliable technical methodology to determine the disease/disorder. Not complaining…just explaining!
Since I started having symptoms early on: falling, balance, seizures, severe fatigue issues that required B-12 injections, vision, and comprehension…and not having the diagnostic tools to determine a confirmed disease back then; I learned real quick how to ‘fake it’ in order to survive. In using the phrase: ‘fake it’; I’m suggesting finding ways to compensate, early on, in working around the limitations of my undiagnosed symptoms in order to achieve or survive.
Comprehension reared it’s ugly head during learning how to read. But I compensated by paying attention to lectures and demonstrations and film presentations, so I ended up finishing high school in the top 10% and received a two year degree ‘Cum Laude’ and making Who’s Who for both.
I tried several times to continue my education for a BS but because the upper level classes require independent study, ie: reading; I had to forfeit this dream.
I had a passion at an early age for architecture. Before I graduated high school, two of my designs were actually built. I was accepted into the UNC-Charlotte’s College of Architecture but my parents would not submit financial reports.
I would find out much later that my my step-father was committing tax fraud. As a kid of ten through high school, I would spend all of my free time everyday drafting and creating.
Believe it or not, I ended up in professional theatre and studied performance and dance at the state theatre of Virginia. Get this: I was so ‘awkward’ in performing choreographed dance routines that the powers that be thought I was some kind of comic genius…no! seriously!
I was the first in my class to win a professional gig that included dancing in repertory theatre and won a regional acting award my first year out. But the gran maul seizures became very prominent at that time so I had to give up this career after three years.
I went into business management/accounting for a few years…changing companies whenever I would have flare ups so that a particular situation would not see a pattern of my ‘strange’ behaviors. I also learned to make myself invaluable…by doing what others wouldn’t… learning SOPs like Bible verses… excelling in reaching goals… and long, long hours.
Back in the 70’s & 80’s, it was an expectation to move around within your professional venue in order to advance, so I was able to hide in this ‘smoke screen’. I soon would become comfortable in self-denial of my undiagnosed symptoms.
In my personal life, I was social without becoming too intimate…or letting anyone get too close.
I built a career in the mental health field in developing programming for dual diagnosed patients to move them into interdependent living situations in the communities. I became so successful, that I would be hired into certain agencies through the back door in order to institute programming changes so that they wouldn’t loose their funding and certifications with the state!
My last position was so stressful, it was a state institution that the state was considering closing, and I was so removed from the reality of my symptoms by actually dissociating mentally/emotionally to get through the day, that I ended up becoming a patient. How’s that for getting in touch with one’s own true self…have a psychological break…works every time…just saying!
I eventually healed enough emotionally to be able to turn this period of ‘personal healing/therapy’ into a huge positive in helping establish the first patient run group home in the country for ‘Dissociative Personality Disorders’…under the auspices of a local mental hospital. Which was yet just another unrecognized MS related symptom…but it was what it was!
During this time, I completed the accreditation for the state institution, established and participated in the new concept group home, and continued my own personal therapy and learned ‘acceptance’ of my ‘symptoms’ and deciding to live the reality of my life…regardless!
That’s when I moved to my beloved Appalachia…got a minimum wage job…started a life of living within my own reality…and allowing people to get to know me…and me them! I literally rebuilt my life.
I took my time in going back into administrative work. I became a purchasing director and payables manager for a historical four star inn and spa for eleven years…until they noticed the symptoms weren’t going away anymore, such as falling off the loading docks, down stair wells and having those little embarrassing moments of unexpected incontinence at staff meetings! They offered me a severance package that would choke a horse.
I had already started pursuing working with specialists in order to find a diagnosis for the symptoms. I got another job and eleven months into it, I received a confirmed diagnosis for MS…about two and half years ago. I had gone most of fifty years not having any idea what was wrong.
The same month that I received my diagnosis, I was fired because I was rude to another employee who asked me to change his personal file information so that he could commit fraud… I was fired because I didn’t refuse him ‘cordially’… NO SHIT!!!
By this time, the symptoms were so consistent and severe that I could no longer remain ‘gainfully employed; how many employers did it take to fire your ass before you figured out that you weren’t being successful in compensating for your disability!?!!?!? Two was enough for me…thank you very much…just saying!
I was finally able to have an intimate partnership of twelve years of which I had to leave in order to enter an accessible apartment situation so that I could remain self sufficient…as much as possible. He is still devoted and supportive and remains my caregiver and emotional connection to the human race.
I have a grounded spiritual relationship with GOD! Because I am kind of limited as to ‘ability’ these days, I ask HIM to use my words that I write so that they might comfort or entertain or provide support for others so that they may find their way in surviving our chronic illness…just saying!
I have no regrets…the journey of my MS is what it is…and allowed me to develop many skills and character traits that many of the ‘norms’ would never have the opportunity to even experience!
Sure I’m disappointed that I can no longer pursue a ‘gainful’ employment…I enjoyed and found self worth in feeling like I was contributing in some small way to the small part of the world that I inhabited.
I am disappointed that my intimacy and certain social and travel possibilities are now compromised… but I also embrace the knowledge of the advantages of coming into my progression of disability at a time in history when I have access to the world wide web and a zillion cable channels and the faith in the on-going research for treatment of my disease.
I am very thankful for having had a wonderful life full of opportunities and travel and which allowed me to live my dreams and goals as fully as my disease would cooperate!
Accepting and living within the reality of what the unique existence that Multiple Sclerosis brings to each of us as it unfolds during our life journey, is the best way to cheat the negative of our personal experience…