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HEALTH ETHICS TODAY
Volume
12, Number 1, Fall/November 2001
In
the first person
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 (RP). 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 series of tests that
I followed in my younger years. I have had regular assessment and field-testing
every couple of years. But there is no treatment for this condition.
While there is much research into this area, 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 further field tests, as I would notice myself when
I lost more vision. Since then, I have undergone enormous change (and
stress) with educational pursuits, birthing a child, relocating, and
starting a clinical practice. Over this time I have noticed a large
decrease in my sight with 3 1/2 degrees of field vision remaining.
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 with a speech program so I can scan books and
printed materials that the computer reads back to me. Having a computer
is a powerful tool for accessibility, which 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 as I rely
heavily on the actions of those around me. It is only through the contribution,
adaptations, and sensitivity of others, that I can live an independent
life that, in turn, allows me to 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. But, at least,
this disease is not life threatening. I am not going to die and there
is no physical pain. Yet 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 I can't see my daughter's artwork from school or
read her first story or when I can't recognize the faces of those I
love or do the things that I enjoy now. I am overwhelmed with sadness.
How can I just accept my fate?
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 can be a terrifying
major endeavor. While I long to be able to walk into any situation
with confidence and grace, I often feel self-conscious and awkward.
With these obstacles, how do I lead a "normal" life? Yet,
what is normal? We all have our strengths and weaknesses. But at what
point do our weaknesses become disabling or "abnormal"? How
do we use our gifts to 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 inadequate (and less of a woman) because
I can't do many of the things that other women do? How can I be true
to myself and happy (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.
Individuals with other conditions won't necessarily have my particular
challenges. We all are different and require different things. Even
other people who are diagnosed with RP will require differing needs
from myself. There are many variables that influence the success of
managing a serious disability. 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. I believe, 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 every day of precious sight that I have
and taking nothing for granted. Every day 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 a 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, it seems, that when you lose one sense, others become more
sensitive. I continue to adapt to my blindness-as do those around me.
Karyn Christensen is a registered massage therapist
and a member of the British Columbia College of Massage Therapists.
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