I am a 27 year old Registered Massage Therapist. I work, together with my husband, in our own clinic in a beautiful and quiet town in the mountains. We have a daughter who is a year and a half-who is the love of my life. My many roles and relationships with family, friends and clients are very satisfying. I have everything I can dream of and more. And yet, there is one thing that never goes away and challenges me everyday of my life. I have Retinitis Pigmentosa. I am going blind.
RP is a degenerative condition of the photoreceptors within the retina. Usually affecting the rod cells first (although some lose cone cells first), this disease leads gradually to severe tunnel vision and eventually to total blindness. The onset and progression of symptoms varies in each person affected with RP.
From very early on in my life, my family began noticing that I was having some visual difficulties. I was terrified of the dark and often I would miss objects that I very obviously should have seen. At the age of four, the fate of my life was laid out before me, although it was years before I really understood. For my family the news was shocking. One look from the family opthamologist began the sequence of tests that would follow in my younger years. I have had regular assessment and field-testing every couple of years but there is no treatment for this condition. There is much research into this area but there have been no advances in retinal research that currently offers me any hope.
At my last visit with the neuro-ophthalmologist I was told that there was little use for the field tests any more. I would notice when I lost more vision because I had such little left to lose. Since then, I have undergone an enormous amount of stress and change with educational pursuits, pre and post-natal changes, relocating, starting a practice and managing life in general. Over this time I have noticed a large decrease in my sight. With 3 1/2 degrees of field vision remaining every bit is accounted for. Although I am still able to read and write with large print, and colors are detectable, holes are forming in my usable tunnel vision with only a sliver remaining in one eye. This drastic decline has forced me to make more adaptive changes in my life.
I have a new computer, which has a speech program. I can scan books and printed material and have it read back to me. Having a computer is a powerful tool for accessibility, it has opened up the world for me again. I require the use of a cane, seeing-eye dog or guide to navigate my surroundings in most circumstances. I am continually developing new ways of adapting to my changing abilities.
I am not the only one who is required to adapt. My family, friends, and community must also be sensitive to my special needs. Although I consider myself independent, this is a relative belief. I rely heavily on the actions of those around me and demand from them a high level of attention and giving. It is only through the contribution, adaptations, and sensitivity of others, that I can live a more functional and independent life. This in turn allows me to focus on my strengths and contribute back to my community.
I have always thought that many people hide their fears and insecurities quite well from others. But in going blind, I wear my insecurity like a badge. I am vulnerable. With RP, just when I feel like I am managing the loss of vision, I lose more. It never stays the same and I know it is only getting worse-a never-ending grieving process. Emotionally exhausting at times. At least this disease is not life threatening. I am not going to die and there is no physical pain. Yet this is my reality and I can't deny that I am fearful of the day when I can't see the magnificent colors and shapes around me. I think to the future when my daughter brings home her artwork from school or her first story and I can't read it, when I can't recognize the faces of those I love and when the things that I enjoy doing now become less and less possible. I am overwhelmed with sadness. How can I just accept my fate? It can be difficult to face each day with a smile on my face.
Basic survival skills and domestic demands are becoming harder to manage without the assistance of another individual. For me, blindness is very time consuming. I am always late! Schedules for the average person do not work for me. I have difficulties fitting my life into a 24-hour clock. Balance within my relationships is also hard to maintain. Often I feel I need more than I can give.
It is easy to become insecure and want to lock myself up in my house where I am familiar with my surroundings. Social functions can be stressful, as any new place is full of unfamiliar obstacles. I run into things, miss visual cues and body language and I can't even assess whether I am in a dangerous situation or not. And if I were in an unsafe circumstance, what would I do - run? Just crossing a busy street is a major endeavor that can be terrifying. I long to be able to walk into any situation with confidence and grace but most often I feel self-conscious and awkward.
With these obstacles, how do I lead a "normal" life? What is normal? Is it normal for me to have a career and family and friends? Is it normal that I do all of these things with a huge challenge to my daily life skills? We all have our strengths and weaknesses. But at what point do our weaknesses become disabling or "abnormal"? How do we extract our gifts and contribute to our community with such limitations? And where do these limitations come from? Perhaps we are only bound by our preconceptions and not by our disabilities at all.
How do I break through feeling less of a woman and often inadequate because I can't do many of the things that other women do? How can I be true to myself and proud of who I am and still wish with all my heart that this wasn't happening to me? I don't want to go blind. But, this is my life so I live it.
Can one really relate to another's limitations? Individuals with other conditions won't necessarily have my particular challenges. We all are different and require different things. Even others diagnosed with R.P. will require differing needs from myself. There are many variables that influence the success of managing a serious disability. It is crucial for the public and those specializing in these issues
to recognize that we are all individual.
In conclusion, I believe it is essential for all members of society, disabled or not, to be aware of our unique selves. Whether there is a stereotypical notion of norm or not, we all work at providing safety, security and quality of life for those around us and ourselves. We all contribute to a whole. There is not a normal or abnormal, just different. Meeting the special needs of the less able requires thought and sensitivity. Understanding our differences, we can adapt together to sustain quality of life for everyone.
Christensen, Karyn. (2001). In the First Person. Health Ethics Today, 12:1, p. 15-16.
As for me, I am appreciating everyday of precious sight that I have and taking nothing for granted. Everyday that I see my daughter's radiant smile is a victory to me. I am grateful that I have chosen a career that I am confident with and very good at. My work is my gift and contribution to society. Many believe that I am an excellent massage therapist because of my loss of vision and I believe so too. It is true what they say, when you lose one sense, others become more sensitive. I continue to adapt, as do those around me.