Years ago, I had the privilege of meeting Alex Brejcha while we worked together to find an accessible home for he and his wife, Tatiana. Alex was prepared to purchase a home and we had funding for modifications, yet the challenges in finding a home that could be modified for accessibility were overwhelming to say the least.
Yet Alex never gave up. In the process, his persistence, positive outlook and sheer determination were a lesson for us all.
This week I am pleased to introduce Alex as our guest blogger to share his personal thoughts about living with M.S.
Diagnosis and Early Symptoms
M.S. is a neurological disorder impacting the ability of nerves to transmit signals from brain to body. The biggest problem is that there are a variety of different ways that this impacts people.
In my case, the initial diagnosis was made in 1980 when tingling in the hands and coordination impairments immediately had a major impact on my life. I was an art student at Temple University in Philadelphia with a gallery interested in my work, but I did not have enough pieces yet for a show.
A combination of symptoms complicated things. I had visual problems which fortunately cleared up, but increasing coordination problems ended my art career hopes, and walking problems diagnosed in 1980 progressed to paraplegia between 1980 and 1985.
The good and bad of research
In retrospect I realize that part of this was my own fault, because another aspect of M.S. is that Affect has a very real Effect. In other words: attitude is a bitch, if you forgive the language.
To clarify: I was very fortunate to work graveyard shift at a major teaching hospital in Philadelphia for 27 years. We had an excellent medical library, and the first thing I did upon my diagnosis was go to the library to research what M.S. was.
This was a big mistake! What I failed to realize was that medical journals concentrate on the worst aspects of a disorder. As I was reading, I made the mistake of believing that what “might” happen “would” happen — and my body happily went along with it!
This is a crucial aspect of Multiple Sclerosis which people need to understand if they are diagnosed. This is a condition with a variety of forms ranging from mild to more progressive types such as I have.
Life is what you make it
It is critical to work closely with a neurologist specializing in this condition in order to take advantage of improving treatment paradigms that are being developed. Just because you are diagnosed with this disorder, it does not mean an end to your life.
As I wrote, I worked for 23 years in a wheelchair and drove independently — first in cars with hand controls, and later in a variety of converted vans. One advantage of the diagnosis was that I had a handicapped parking spot right outside the entry to the hospital and I didn’t have to pay for parking in the hospital garage.
To borrow a cliché: life is what you make it!
I never would have had the relationships I have been lucky to have (including a wonderful five year marriage to a woman I still live with), if I had not been diagnosed with M.S. The truth is, before M.S. I was a terminally, overly shy nerd, afraid to approach a woman.
But when everyone is staring at you anyway: what the hell?
To access additional resources on M.S. and learn more about Alex go to his website at Brejcha Personal & disABILITY Resource Site .
