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My Zig Zag Path to Vision Loss Resources

May 12, 2014

DSC_6480People often ask me how I ended up working in the field of Vision Rehabilitation.   The short answer is: I was visually impaired as a child.  As I look back, I see my path is a zig zag. The long answer is the way most people are led to their life’s work, and my story is no exception.

My visual impairment is due to albinism.  Albinism is congenital disorder characterized by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of tyrosinase, a copper-containing enzyme involved in the production of melanin.  I have tyrosinase positive albinism which means I have some pigment in my hair, skin and eyes. When I was a child, I was legally blind because I had very little pigmentation in my eyes. In some cases of tyrosinase positive albinism, a person’s vision can improve as they build up more melanin, the active ingredient in pigment in their eyes. This is what happened to me. As I went through puberty there was a sudden increase in the production of melanin and my eyesight improved to near normal levels. 

It was the summer before I turned 13.  I would swim with the swim team for two hours in the morning and then spend every afternoon sitting on our porch, staying cool and reading books. For the first time, I understood why people read books, because it was finally a pleasure for me to read page after page for hours on end. Before that, learning to read and getting through reading for school had been difficult work. It wasn’t until much later that I realized that was the summer I went through puberty and I had an increase in pigment production and my vision improved to the near normal levels I have today.  

After High School I attended the College of St. Catherine’s for two years. I studied international politics and language. I recall during my year abroad in Sweden, I became fascinated while watching a family movie. The movie was in German with Danish subtitles, yet I understood what was going on and languages were easy for me to learn.

But after this, my zig zag path moved into the art world. I earned a degree in photography and videography at the Minneapolis College of Art and Design (MCAD). For years, I had my own portrait studio and also did fine art photography that I exhibited across the country. Despite this success, I felt I needed to “find myself.”

I ran away from Minnesota to a place where the only person I knew was me as part of that common quest of running away only to meet your own self. I went to Seattle for a year. While there, I did the same tasks, working in a photo lab and exhibiting work as an artist, but I no longer felt this was enough. I didn’t know what I wanted to do exactly, but I knew that being around a large supportive family would give me the space and support I needed to find my way. Seattle gave me the space, but no support or people to bounce ideas off of.

What I knew for sure is that I wanted to be in Minnesota surrounded by family. When I had left for Seattle, I had sold everything. So I went back home and rented an inexpensive apartment relatively close to where I grew up. I became a nursing assistant because it paid fairly well. I worked with the elderly at a nursing home. I applied to the MFA program at the University of Minnesota, but I was turned down. I thought, now what do I do?

One morning I left for work a little before 6 am. As the sun was rising, I had a thought. What if I could help people who like me have vision loss? I didn’t receive many services as a child and then I didn’t need many when my vision improved. What if there were jobs that involved helping people with vision loss?

With this inspiration, I did a little research. I found a fellow at the Phillips Eye Institute that was doing work that interested me. I interned with him while working the nursing home shift. I liked this work. I applied for and won a scholarship to get a master’s degree in vision rehabilitation. A little while after I returned to Minnesota with my master’s degree in hand, the fellow I interned with at the Phillips Eye Institute left and I took his place. I worked there for ten years before coming to Vision Loss Resources to work in the Community Services program. I worked as a Community Specialist for Vision Loss Resources for six years before being promoted to president/CEO. 

After working in this field for more than 20 years, it’s easier to understand and explain what bothered me about the difficulties of being legally blind when I was a child. I never knew how much I really missed of the world by not seeing so well. At the same time, it didn’t seem that important that I could not see as well as my siblings. What mattered to me is that no one understood what it felt like not to be the same as my siblings. I was different. I didn’t look like my siblings. I didn’t see as well or play ball as well and the adults in town called it out. They meant well and yet the question was “Why are you different?” 

What I have learned from being in the field of vision loss and blindness is that the loss of vision separates us from those who see normally. Those that see normally fear those of us with less than perfect vision. It takes people with vision loss longer to do the things a sighted person can do in an instant. Those with sight don’t want to wait for us; they would rather do it for us. Of course, we then take issue with someone trying to run our life or do it for us. 

What it means for me to come full circle with my own story is that I am part of creating a place where people with vision loss can come and be welcomed.  I have a place in  creating a community of service, skills and support for people with vision loss. Vision Loss Resources is that place to lay down the burden of grief and loss over losing one’s vision.  Where people come to be with others who like them understand how important it is to have a place where they feel safe, supported and in community.  A place of our own and a community to support us as we grow and change along our life’s journey!