23 October, 2008

Answering a Reader's Question

A few days ago I received an e-mail from someone who has been reading
the Exception for a while. The question was a bit out of the blue but
welcome (as are all questions) all the same. My reader wanted to know
more about my vision and why I don't blog about it.

For me, this was a fairly straight forward answer. I don't see well - I
don't drive nor can I read normal print to the extent that I use a
screen reader at work and at home on the computer. But, my vision is a
non-issue for me in so many ways. It doesn't stop me from doing what
needs to be done or taking care of my daughter, or even keeping me from
enjoying life to the extent possible.

This is not to say, in the slightest, that it has always been easy to
have limited vision in a world and country where so much is vision/sight
based. Sometimes it is challenging.

I was diagnosed with a retina disease at the age of 9, just a few months
older than the Diva is now. My disease is 1 in 15,000 OLD men - or it
was at the time. I was the youngest person to have it so somewhere in
the medical literature, my case is explained in detail.

For my 9 year old self, it was weird to not see but it wasn't too much
of an oddity. As the hormones kicked in, my vision (or lack there of)
became more of an issue. I had to overcome the challenges of make-up,
eye contact, flirting, not being able to drive or see the board/read
notes, and other little things that teen aged kids take for granted. I
had to come to terms with being very different. The school had to come
to terms with me as I didn't exactly fit into the categories that would
allow them to get funding. It was an experience for everyone.

In the years that followed high school, I attended a summer at
Cambridge, traveled through Europe, went to college, went back to Europe
(on my own) to teach English, worked for an Irish Parliamentarian,
traveled through Australia and New Zealand, worked in various summer
camps teaching English, and finally obtained my MA.

And then the real challenge came - I became a mom.

My daughter is an amazing kid in her own right, but is that much more
amazing because she puts up with me. She is compassion and love and is
so very accepting of the things that life offers. I don't know how I
got so lucky to have her, but... I am ever so grateful.

Throughout the 29 years of my low vision challenge, I have rarely to
never felt bitter toward my eyes, though I think I might have good
reason!! For the most part, they are a blessing; the challenge is
something for which I am grateful.

Had my eyes been perfect (the shape and projection is that of a person
with 20/20 vision) I would be a completely different person!! I can't
exactly say how I would have been different outside the natural leanings
of my personality. I was a very independent and happy alone kind of
child. Had I been able to drive, I am sure that I would have spent my
life traveling via car etc on my own. I would have probably worked A
LOT, would not have my fabulous daughter, and may have a completely
different set of interests and priorities.

The challenges remain. I can't just pick up a book and read it despite
my love for books and bookstores. I often can't see the wonders that my
daughter is doing or the adventures she is having without me (which is
sometimes good and sometimes bad). When she was little, I couldn't
label things for her to teach her new words just as I can not do puzzles
or play many games with her. When she dances on stage, I am left
watching all the kids unsure which is her but knowing that she is loving
life and doing her best - and that is all the vision I need!

She is often my seeing eye kid - a role she both loves and yet dislikes.
She doesn't understand that I can do it just fine without her just as I
did for years here and abroad. She likes to have a role; likes to help.
At the same time, she often feels like she is the parent - which is
something that I am working to correct. We are a team, but she is not
the parent!! I need to send her to stay with my parents for a week or
two during the summer - she would love it but also, she would see that I
can survive without her eyes.

Most of the time, I know my limitations. Asking for help is something I
know how to do though, to be frank, I don't always do it well. I like
to think of myself as just another parent living in a world that looks a
bit different than the one most people enjoy (but then don't each of our
worlds look a little different). Most of the time I think I am doing a
pretty good job - my daughter is happy, we are healthy, we live an
exciting and full life, we are open to the possibilities... and I am, by
default, teaching my daughter things that will help her throughout her
life.

Parenting, for me, is a series of opportunities for creative
expression, solving problems, and deductive reasoning. We have to
figure out how to check homework, study for tests, and do research. The
Diva is learning to study (and learn) in so many different ways while I
am continually thankful for having a wonderful memory and a flexible
mind.

Thus, dear reader, I hope that this answers all your questions - though,
knowing you, I am sure that there are more!! I am open to answering
them if I can. In my life, maybe because of my vision, I have learned
that there are so many ways to communicate; so many ways to express
ourselves to one another. It is nice to know where the lines are and to
color within those lines - and yet, I can tell you that sometimes life
outside the lines can be a lot of fun; very fulfilling, and a world of
opportunities and possibilities!! There is so much beauty to behold,
whether we see it with our eyes or our hearts.

9 comments:

dadshouse said...

Wow, I had no idea. How limited is your vision? I know you love books - can you read them? Or do you listen to books on tape? So curious. It's amazing how we each rely on different senses. Thanks for sharing.

said...

Beautiful post of overcoming any challenge life throws at you. Good for you girl! And the Diva was made just for you! That's how you got so lucky.

Thanks for the insight. (pun intended!) :P

The Exception said...

DH - Yep - I do listen via tape/cd and I am doing it ALL, THE, TIME!! I was fortunate to be a strong reader and lover of language early... and it stayed with me.

(And I still play a mean game of word twist) (And it is all with my eyes)

T - She was made for me... Sometimes I think my purpose was to have her. We are quite a pair!

We all have challenges - they come in so many different forms.

Aaron said...

Dear Reader was most interested to know if you had experienced life in this condition always, or you knew something of the world before your vision deteriorated. Although, it is indeed impressive to those with perfect vision how those without cope.

My claim to fame was finding an error on a 3D vision test when I was in High School. Just what my ego needed, right? Well, now that I'm older and I've experienced a noticeable amount of hearing loss, I'm ever more grateful my vision has stayed intact.

Anonymous said...

I have to say, I had no idea. Either I wasn't paying attention in The Exception 101 that day, or my mind just eliminated what I might have known.
Either way, I'll say thanks for sharing and thanks for your insight. You are more thoughtful than I think you give yourself credit for.

Mama Llama said...

Oh, and I can totally vouch for your Word Twist skills. Ugh. Untouchable. I'm dying to challenge you to sudoku!

I am a firm believer in eye contact when speaking to another. You never failed to maintain that, and having had many friends with wandering eyes, glass eyes...variety of issues...I am used to seeing what many would consider an off-center focus. You do not exude that at all in conversation, which can lead many to be completely surprised, as with me, that you would have any vision issues.

I enjoy so much learning these details of others. It adds to the special flavor that each person in my life has--distinct and wonderful.

An interesting note--I always have said that, if I were to have to choose, that I would opt for hearing over sight any day. I am afraid of the silence and would feel so alone without my music.

Great post, TE. Be well.

Anonymous said...

Gosh I had no clue!!!

What a totally inspiring story!! Your daughter does sound like an exceptional little being!

I work with a guy who has limited vision actually! So I am actually familiar with the little people that live in the computer ;)

The Exception said...

so I learned colors, math, language etc - which was a good thing!! My writing is that of a very educated prof (handwriting that is!!) as the vision weakened before it was perfected. Oddly, I loved math until I was in JR high - I knew how to do it and could teach others but because I couldn't see the board, I could not translate what I knew on to the paper!

JR - I don't talk about it so am not sure it was known or unknown - and thanks!!

ML - Your stories had my full attention! Everyone is so very different. I never realize the gifts my low vision has given until I stop and write something like this. It doesn't define me but it has, in a way, touched my life very intently.

Harassed - ah, the voices. People hate the voices! My daughter used to call it Mickey Mouse as I listen to everything at a very high speed (so no one understands what I am reading - privacy you know) But the audio books... she loves. She is extremely visual (as was I) so listening to audio has helped her round out a little. Aaron - It was 20/20 until I was 8

Susan said...

E: I had no idea about your vision. Truthfully, your words here show just how well you see things, in all respects.

And I loved your comment about it sometimes being an advantage to NOT always see what little D. is up to! Having a 9-year diva, too, I know that feeling!