Awhile back I posted on Facebook stating if you could ask me
any questions about what I am going through or my disability what you would
ask, below are some questions I received.
What is the most important thing you learned about yourself
while away at school? (Asked by Marilyn, family friend)
This is a hard question and I have to really think deep
inside me to figure out this question. My training was a challenge but also an
achievement. It made me face my disabilities in ways that I didn't want to, I
couldn't ignore that I was going blind or pretend that I will wake up tomorrow
or the next with my vision back. It was like the fog lifting off the hill side
and revealing what was underneath, the truth. I could not deny any longer that
I was vision impaired and that it was going to get worse. I am scared, with all
the training I get it won't prepare me for what lies ahead emotionally. It is
going to be hard since I already battle with depression. Every time I lose more
vision I go through the cycle of never ending cope. Even though the emotional
part will be struggle, the training proved to me that I am capable to do things
and won't be helpless. Heck, I did wood shop! I didn't think that I would be
capable or get that confidence back and I did. I still have to work on the
confidence but it's better then where I started, none. Training showed me that I
have to stop denying and accept that this is who I am and it won't change. I
have to change within myself. It won't be easy and there will be days that I
will need a break, but I have to keep pushing. I have to stop thinking about
how my life use to be when I could drive and play sports. My mind is my
challenge, I have to overcome the negatives and accept my blindness.
I have reached a point that I am no longer embarrassed when
using my cane and it is now an extension of my arm and my eyes. I have somewhat
accepted that I am vision impaired by using my cane, but not completely accepted
it. Still work in progress.
What is the best way for your friends to be supportive of
what you are going through? (Asked by my friend, Sarah)
The biggest thing is to be patient with me and don't be
afraid to ask questions. I will let you know when I need help and I am still
learning what I need. I was not given a manual on how to deal or explain to
others what I am going through or how to help me. I am having to learn as I go
and when my vision changes, it starts all over. Another thing is try to
understand where my anxiety comes in when going to new places, being in a large
crowd or dark places. Not being able to see( or not able to hear as well) and
having to navigate in places I don't know makes my anxiety go up. Every place
looks and feels different with my cane and it takes me to time to learn it.
Being surrounded by people when I can't hear or see makes me feel like I'm
being stepped on and stuck in one place. I get the fear that I'm going to be
left alone there, because my friends can move around freely, whereas I can't.
People forget that I am vision and hearing impaired because "I don't act
it", I try to adapt as much as I
can. I know that I was not always like this, but things changed and I changed.
How much vision do you have now? Are there any surgeries
that they are trialing that would help your sight or hearing? (Asked by Karen,
mother of my friend)
If you were to take a paper towel roll and look through it
with one eye, that is what I see to a point. There are some spots of my central
that blurry and I seem to always have floaters or lines of light in my vision.
It isn't a perfect circle, my peripheral is gone and my central vision has
spots missing. Hard to explain. Below are pictures to help you get a better
idea. At night I am completely blind, I can't even see my hand waving in front
of my face. The area that is gone is not gray, black or white....just gone.
There are no surgeries, but there are drugs that are on
trial. I haven't been keeping up to date with them all, like I should. I am now logged into a new program called My Retina Tracker, since my blood was used for genetic testing. They should be updating me with more trial information. My
hearing can't be fixed, but we think it will remain stable and hearing aids
will be enough.
Don't be afraid to ask me questions, it helps me open up and talk about which I need to do more of.
