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.
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.