Born Blind, MS in 1989

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

5 Comments:

  1. What an amazing story, and what a strong and inspiring individual. Her story is even more amazing when you consider that she also managed to own and manage her own business and raise a family!

  2. Helen is a wonderful woman! We’ve gone through our MS experience together and she’s been amazing every step of the way! She was diagnosed before me and experienced life- changing pain before I even knew I had MS. I appreciate her sharing her story here on MSrelief and look forward to learning more from her.
    Linda

  3. We have so much to learn from women like Helen who are such examples of strength and determination and don’t let anything stand in the the way of achieving their goals. She certainly has my gratitude and admiration.

  4. If I were in your position, I don’t know how to live my life at the best way that I can do. Probably I will be frustrated and depressed. But unlike you, you have a strong spirit. You’re still positive towards life. That is the attitude that everyone should have.

Comments are closed