"The window became much clearer because I never had the illusion that there would be a next time; because in the back of my mind I always knew that maybe there wouldn't be."
For many the thought of losing their sight is far more than frightening.
When the moment came that I had to think about it...I thought about losing my independence, the inability to breathe in beauty and not being able to pick up a book, turn the pages and inhale the words that have always been a sacred part of my world.
As time passed, I began to see things differently. I thought about how people would never age. Not my parents, my children or my friends. They would always be the age I saw them last.
I thought about the way the images fade in old Polaroids and that became the image of my life.
Losing your sight sounds pretty awful doesn't it?
I won't lie. It's not a picnic in the park but it's not that bad either; at least on most days.
Here is what I will tell you. It is life and you learn to deal with it. Adaptive techniques and technology have made it easier.
Vision loss: both a blessing and a curse
In the beginning, the days were a bit blurry but the nights became almost total blinding. Now as I travel down the road, my peripheral vision has become far more diminished. The blind spots are getting larger and I am starting to name them like children.
I know that down the road those spots will likely get bigger and my central vision will become more distorted until I see nearly nothing.
So many things have come down to making choices. When I first got my diagnosis years ago, it was both a blessing and a curse.
Preparing for down the road took me to a twisted fork in the road and helped me make some important decisions. Some were shaky but most were positive. I will let you in on a little secret, having your choices whittled down makes it easier to make a decision and be happy with your choice. When you have a multitude of choices it is so easy to get tangled up into things that really aren't all that important. Does it really matter if my cell phone is red, blue, white or black? If Jack's eyes are brown or blue or if his hair is blonde or black? I just see the whole person.
When you have a handful of choices versus dozens you are more apt to make a decision without regret; after all, there is far less to second guess.
As journalism major, I knew that my career would be adversely affected and opted to change my career in my mid-twenties and chose a path that would let me enjoy a bit of writing as well as a touch of creativity.
Somewhere in the back of my mind, I could not imagine a life without words but eventually realized that words will remain a permanent part of my life and someday it will no longer matter if they are in braille, written or spoken.
When vision keeps fading
When it finally sunk in that I was losing my vision I began to race the clock.
Everything in life became magnified and accelerated. One day you wake up and the world is seen in segments-before and after.
The window became much clearer because I never had the illusion that there would be a next time; because in the back of my mind I always knew that maybe there wouldn't be.
Life became all about the moment and I was impatient. I wanted to experience it all now. The grains in tomorrow's hourglass were too far away.
When you lose your vision gradually everything in your life becomes a moving target and you cannot stop chasing it.
I have learned that as soon as you adapt and become comfortable with a certain level of vision by making the changes necessary to live your life to the fullest, the ground will shake again and you live in constant readjustment.
For most of my life, it was relatively easy to adapt. I figured out ways to walk at night utilizing memory and landmarks. I always walked behind people so I could tell when stairs and other obstacles were coming up. I relied on the movements of those ahead of me and sound. It wasn't that hard to adjust to minor vision changes.
Questions of vision, personality, and life
There does come a point when you lose enough vision that the simple adaptations you have made just are not enough to cut it anymore and you have to make the decision to change your life. That time for me began about four years ago and it is still a work in progress.
Change is hard, especially when it touches so many everyday little things. I had to pause and reflect on the changes I would have to make. Would I be able to read my mail? Write checks? Sign credit card slips? Organize money? How would I be able to coordinate my clothes? Shop? Cook? Clean? Could I continue in my career? Could I still contribute to society? Would my life still have value?
Undergoing any major life change, whether it is a career change, divorce, death, a heart attack, a stroke or vision loss has a tendency of bringing out unwelcome changes in your personality. I think I may have gotten lost for a while.
Most would tell you I am usually good-natured, have a quick sense of humor and wear a smile. In the beginning as my vision began to fade so did my smile. My patience shrank to the size of a gnat and my self-esteem had me chasing fruit flies.
I was a different person for a short while and not exactly someone I liked.
When my vision went from an annoyance to a disability I found myself in a foreign land with familiar faces.
Have you ever wondered what happens when you can't see yourself clearly in the mirror? That deep insecurity about your physical appearance becomes even deeper until you try to convince yourself that if you can't see those fine lines and the silver strands that highlight your world, then just maybe no one else could either.
When you begin losing your sight, there are a lot of resources to help you learn how to adjust to your new life but no one prepares you for what others think and feel or how they will react and no one prepares you for the mental stress that accompanies vision loss.
The biggest challenge of vision loss
By far the guilt is the hardest thing to overcome. There is this vague yet constant feeling of having let so many people down. Life has been a little harder on my son because his mom is different. How much did he miss out on because of my vision. I could no longer chauffeur him around. When he complained, I reminded him that the tips were not that good but the guilt got to me. As he has gotten older the guilt has dissipated in some areas and increased in others. I never want him to feel like he has to take care of me. I never want anyone to feel or think that. I am not someone else's responsibility.
Losing my vision has changed the way I think and feel about many things, especially relationships but that is a tale for another day.
The guilt, by far, is the most difficult part of vision loss. Logistics can be learned. Identity and self-perceptions can be adjusted. Guilt is far more insidious, chipping away at your relationship with your family and loved ones.
Losing your sight is hard but it is endurable. You do get used to your new life and learn to do things differently.
There are cons to losing your vision but there are some great things too. My world is far more beautiful than most. I have my feet planted in two different worlds and there are a thousand shades of gray and the most beautiful colors too. Most people only get to see them... I get to hold them, feel them and taste them. They are more precious than jewels.
You only get one life to live so you might as well live it. Enjoy the view.