The following is an open letter that I sent to my friends, colleagues, staff and other business acquaintances. It was sent in March, 2006 after I was accused of drinking on the job when my boss noticed I was staggering and had fallen at a work related social event.
Until that day, I did not disclose my disability to anyone at work.
Dear Friends,
On August 17, 1989 my son (who was 16 at the time) and I were diagnosed with a form of muscular dystrophy called Facioscapulohumeral Muscular Dystrophy (or FSHD). You can search on the internet to find out more about FSHD, and its symptoms.
FSHD is one of the many neuromuscular diseases covered under the umbrella of the Muscular Dystrophy Association (MDA).
FSHD doesn’t shorten life expectancy, and for most people it progresses very slowly, giving you time to prepare for and adjust to changes. Unlike some other forms of muscular dystrophy, this one isn’t threatening to heart and breathing function. In my case, it is affecting my shoulders, neck, back, arms, hips and lower legs.
I trust you all and wanted to tell you my story…..
The first time I noticed anything out of the ordinary was when I was pregnant with my son, when I was 19 years old in 1973. I would be walking down the street and my legs would just give out for no apparent reason. The doctors were unable to find anything wrong. I was a waitress at the time and had to stop working since it affected my ability to work waiting tables. After my son was born, the symptoms abated and I stopped falling. It wasn’t until after the birth of my daughter, nine years later, that my symptoms came back. I started falling more often, sometimes more than once a week. The doctors still had no clue as to what was going on.
They ran all kinds of tests and determined that my right leg had lost 10% function and my left 5%. They thought it was from over-exercise using weights and pulleys. However, even after time to heal, I never regained the muscle loss. I found that wearing supportive shoes helped me maintain my balance and lessened my falls. I started to wear cowboy boots as they seemed to help me the most.
In 1987 I had an episode which caused a severe rash, and lesions developed on my face. My eyes swelled close and my sinuses became impacted. My immune system was being compromised by an allergic reaction, but the doctors could not figure out what was causing it.
The doctors thought I had Lupus and began running extensive tests. This continued for two years until I was referred to UCLA Neuromuscular Clinic (funded by the Muscular Dystrophy Association – and the Jerry Lewis Telethons) where it was determined the exact nature of my disease. Muscular Dystrophy.
Apparently, my disease was progressing rapidly and the atrophying muscles were releasing proteins into my system causing my liver to malfunction. My immune system all but shut down and my body was in a form of shock, causing an allergic reactions to everything in my environment.
As you can imagine, I was in shock and denial- being diagnosed with an incurable disease has a way of doing that to a person. To further complicate the matter, my health insurance company dropped me, claiming that I must have known I had this disease and did not claim it at the time my insurance was issued. They refused to pay for all the outstanding medical bills which were over $30,000. I decided to fight back and filed suit, which settled out of court three years later.
I didn’t let the disease stop me from any of my plans. It did slow me down a bit, but I persevered. I went through a divorce, finished earning my bachelors degree, and raised a family on my own. I even started and grew a very successful business (property management).
The disease did not go away and slowly affected me more and more. It wasn’t until 1999 that I finally decided that I needed the help of the MDA and was fitted for leg braces.
It was a very difficult decision for me, as I felt that I could no longer deny it. However, after I was fitted for the braces and saw how much they helped me walk I realized it was the best decision I had made. I regretted that I did not ‘give in’ sooner. With the help of the leg braces I was able to regain stability and found I was falling less and less.
During the next few years I was quite active with MDA and participated in local fundraising and at one point was even on the local broadcast of the telethon. I never let on to my staff or colleagues that I myself was a victim of muscular dystrophy. In fact, I never even told those running the fundraiser, that I had MD.
The braces helped, but as the disease progressed I once again lost stability and began falling. People began to notice that my limp was worsening and that stairs were no longer an option for me. Even street curbs have become a challenge. Staggering was the norm for me and sometimes I would just lose my sense of balance. This was especially true when I am in a period of high stress, or have been ill. These events seem to make the symptoms worsen.
Well here I am again, making a very difficult decision. To “come out of the closet” so to speak, about my disease. Writing this letter has been, again, one of the most difficult decisions for me to do. However, I felt I owed it to myself to not try and deny it any longer.
I do not define myself as having this disease, but it is a part of my everyday life. I cannot just close my eyes and will it away. When I put on my braces every morning I am reminded of my limitations. My physical limitations affect my mobility but in no way do they hinder my performance here as a mother, a loving partner or at work. I have full intension to continue working full time just like every able bodied person.
I feel that the emotional challenges that I have faced with this have made me much stronger. There isn’t anything that I can’t overcome!
Please do not be afraid to ask me any questions about this, as I am very willing to discuss this with you all.
Sincerely,
Dakini
