I was born in 1963 in a small rural town in Alaska. When I was a few months old my parents were informed that I was blind. A few months later, through the faith and prayers of family and friends, a miracle occurred and I showed the first signs of having very limited vision, primarily in my right eye, however, I have always surpassed the legal definition of blindness. Not wanting me to be different from other people I was raised with the motto “If it’s too hard for anyone else it’s just right for you.”
I was a very successful student and excelled in academia, music and drama. I won first place in a local beauty pageant at the age of 17 and participated in the Miss Alaska pageant in 1981. Later that year I was married and over the next 6 years we had 3 wonderful children.
During that time I attended the Alaska Center for Blind Adults and acquired some skills of blindness I hadn’t learned before such as the use of a long white cane, reading braille, computer use, sewing and wood shop. All of these classes were taken wearing sleep shades. I acquired a lot of confidence and useful education at this time.
Consequently, when MS entered my life in 1989, I chose at first to just ignore the symptoms which only seemed to last for only a few weeks and then disappear. This was a busy time of my life so I chalked up the numbness to nerves and overwork, nothing more. Starting on January 9, 1990, the episode that could not be ignored began and from that day to this I have experienced MS symptoms whether in attack or remission for 21 years.
By April 1990, I could barely walk and I was incontinent on occasion. I was admitted to the hospital for testing and my first course of IV steroids. As the psychologist came to visit me and try to talk me through the stages grief, I looked her square in the eye and told her I already knew what it was to live with a disabling condition. All I wanted to know was the alternative techniques that will keep me working and functioning. Teach me the easiest way to safely walk. What can I do to avoid urinary incontinence? I was diagnosed during that first week due to the severity of my symptoms, the MRI findings and the results from my lumbar puncture.
Over the years I have had more than 200 doses of IV steroids. I used Betaseron, Avonex and now Copaxone. I also used Novantrone therapy for 2 years with good results. In 2001 I was given a suprapubic catheter to control my bladder issues. I walk slowly and carefully at home and in familiar places. I use a walker for distances longer than 1/4 block so that I can quadruple my speed and get my heart rate up a little.
I continued to work as a cafeteria owner from 1990-1992, then chose to stay home with my 3 young children for 3 years until they were all in school. From 1995-2002 I worked for the State of Alaska. I then retired on disability. Beginning in November 2010 I began serving a mission for my church which I am able to do from my computer at home. It gives me purpose and great joy and I love it!
Being blind has never been more than a nuisance in my life. MS is more than a nuisance, however, I still believe what I was taught all those years ago; “If it’s too hard for anyone else, it’s just right for me.” ~Helen