[Blindtlk] Encouraging Medical Students To Be Retina Doctors

[Nickie Pearl]

Johanna,
    I am 37 years old, was born with cataracts and was diagnosed with RP at 
22.  I grew up in the blind community since both of my parents are blind. 
As a child I was just like all the others kids with the exception of the big 
glasses and my family not having a car.  I played every sport possible, 
basketball, volleyball, softball and was a cheerleader. It was crushing not 
to be able to get my drivers license, bit it was easy to get over since I 
never knew what it was like to go hop in the car anyway.  My bicycle was my 
car, my freedom.  I put many a mile on my bikes!
    Since the RP hit, I've had to change the way I do things, the bike is 
gone, the ball glove is rotted and has been traded in for a Goalball.  I've 
found another sport and still stay active and live vicariously through my 
daughters.
    The thing that I can not get over or deal with is not being able to see 
my daughters excel in their activities.  My oldest daughter plays Lacrosse, 
I have to have someone there to tell me what is going on, if she scored, if 
she's got the ball etc.  I have some vision but not near good enough to see 
what is going on on a Lacrosse field.  I have to depend on the crowd to know 
if her team has scored.  I know my daughter is good, real good and I can't 
see it.  My youngest daughter is a dancer.  She started doing a solo just 
for me, so when she is up on stage I know which one she is.  I appreciate 
that from her, even though I can see her body, I can not see her facial 
expressions, or know if her toes were pointed or not.   Once again I have to 
depend on someone else for the details.
    I don't care about standing on the bus corner in freezing weather, I've 
done that since birth.  I don't care about walking a mile both way to the 
grocery store, I've always walked everywhere.  I don't care about having to 
pay hundreds of dollars for aids to make things easier, it is what it is.  I 
do care about not seeing my daughters enjoying, succeeding and achieving 
their goals and dreams!
      The big picture is, I'm happy with who I am and my life is wonderful 
with an awesome husband (who is also blind) and two amazing girls.  We 
travel and experience things that most people take for granted, it's the 
things I can not experience that I grieve over, silently.
Have a great day!
Nickie


-----Original Message----- 
From: Johanna Baccan
Sent: Monday, February 20, 2012 8:43 PM
To: Blind Talk mailing List
Subject: [Blindtlk] Encouraging Medical Students To Be Retina Doctors

To All:

I was asked by Dr. Steven  Sang one of the top Retina Doctors at Columbia
Presbyterian  Hospital in New York City, new York  to speak to Columbia
University Medical Students.  He wants me to encourage them to become Retina
Doctors and Retina Researchers.     I am a 54 year old woman and have a
unusual form of Stargardt's Disease and have been visually impaired for 34
years.  I know that we all have mastered some if not all the Techniques of
Blindness.  But my talk is going to be on what it would mean to regain my
vision and what I have missed out on for 34 years.  I would like to hear
from all of you to let me know what it would mean to you to have or regain
your vision.  What struggles have you had.  There has been a declined in
Medical Students to become Retina Doctors and Researchers in this country.
As a whole the Blind Community seems to function in a way that people don't
realize how difficult it really is.  So instead of talking how I mastered
the Techniques of Blindness I have to talk about the reality of vision loss.
These students are exposed to other patients with diseases that are much
more visible and pronounced then our vision loss.  At times my particular
eye disease has been called a Hidden handicap.  Because to look at me even
though I use a cane I do not look visually impaired at all.  Any suggestions
or comments would be greatly appreciated.  Thank you.

Sincerely,

Johanna Baccan



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