Sunday, November 21, 2010

Twenty Years Later...

Twenty years ago this past week I ended up in the hospital with a detached retina in my good eye. Twenty years ago today, I had surgery to reattach the retina. The doctor gave me a 50/50 chance of getting any sight back. It would be months before I’d know how successful the surgery would be.

Two years ago this month, I wrote a 3 part blog on what that experience was like. I shared how I’d come to that point, the fear, the frustration and relearning everyday tasks with my new normal. ( “18 Years” - Part 1 Part 2 Part 3 )

Actually, over the last two and a half years of this blog, I’ve shared quite a bit of what it is like for me to be legally blind.

“The Journey” was a six part story of how my loss of sight ultimately affected my weight and my emotions because I couldn’t be as active or as independent as I used to be. I had walked everywhere. Usually between 20-25 miles/week year round. Walking had been my main form of exercise but also how I used to clear my mind and work through whatever was bothering me. Sometimes it took several miles but it had always helped! For the visually impaired, walking outdoors - or almost anywhere really – requires a high level of concentration to ensure physical safety. I tried to continue my walking but I’d come home more exhausted and stressed rather than refreshed and relaxed. This may not be true for all visually impaired, but for me, I learned that unless I am walking with a sighted person who is watching out for me, it isn’t a good way to unwind or rejuvenate the spirit and psyche. As I described over the six part post, it took me years to come to terms with the loss of sight and to find new ways to exercise both my body and mind.

In “Blink Navigation” and “Is It Spring Yet?", I talked about the many challenges of getting around with limited vision. In the winter there is snow, snow banks, slippery sidewalks and icy streets. In the spring there is the thawing during the day and freezing overnight to create ice covered puddles, black ice, and perfect conditions for hydroplaning on those areas with a light coating of water over the ice. The new season of pot holes also create new mini lakes to step into and potentially take a dangerous spill. Not to mention the vehicles that don’t slow down as they drive through the mini lakes and splash nearby pedestrians. Then once most of the spring thaw is completed, there is the next season which is better known as construction. It lasts till the snow is on the ground again next fall. In “Spring", I described it as: “feeling like the hamster on the wheel navigating through winter snow and ice, then the thaws and pot holes of spring and the joys of reroutes in construction which lasts till the snow flies again in fall.”

Sometimes getting around this city is more challenging than usual. I recently found myself on two buses that were rerouted on the same day. I didn’t know about either reroute in advance so it took me at least 20 minutes longer than usual to get home that day – most of that time was trying to find the new temporary bus stop for my second bus! Finding your way around isn’t always easy, but usually there are good people around who are willing to offer a guiding arm or at least some decent verbal directions. I’ve met my share of idiots who don’t know or care what a white cane represents but most people are more than willing to help if they can.

As a visually impaired person, you have to learn to be an advocate for your rights and needs. If you don’t learn to articulate your needs, how are others supposed to know or understand what you need to function more independently?

This past September, I wrote a post about the recent changes to the Winnipeg Transit website. I had found that the “supposed” improvements made it much more difficult for me to get the information I needed. When the post went up, I had still not heard back from Transit but I heard from them shortly after. I had an email from a man at transit who wanted to speak with me in regards to my concerns and see if he could help. I asked if, in the creation of the new site, they had consulted anyone who was visually impaired, used English as a second language or was print/learning disabled. They had not. Unfortunately that did not surprise me and I told him that not consulting people such as myself was a major flaw in the system.

I asked him to come to my home and allow me to show him just how hard the site was to navigate. He did came a couple of days later and asked a lot of question as he listened very carefully to my concerns. He couldn’t promise that my suggestions would be incorporated but at least he made the effort to learn how others use the site and saw firsthand my frustrations with the navigation. He was able to help me make a couple of changes in my settings to make the site slightly easier but I still don’t like the new site even today. I’m still waiting to see if any more changes are made.

Dating can also be a challenge. A “blind date” can take on a whole new meaning! In the summer of 2009, a US network began airing a show called “Dating In The Dark”. The premise was that men and women would meet and get to know each other in a darkened room and choose whom they wanted to get to know better before actually seeing the person. It was generally to show how superficial society has become and that we should not judge someone on their appearance. The show may have had good intentions but frankly the fact that those people could take of the blindfolds or turn on a light and see the other person is something those of us with visual impairments will never be able to do. We live it 24/7 and are often judged and dismissed without a second thought. We risk rejection every time we are introduced to someone and have to rely on our instincts to know if the other person is comfortable with us and potentially interested in us as a partner. We can’t read the body language that the sighted world is so quick to show.

Being visually impaired isn’t for everybody. One thing that you really have to have to survive is a sense of humour. If you can’t learn to laugh at yourself and your inevitable blunders and missteps then you will drive yourself crazy in no time. That in and of itself is a bit tricky as we are not technically allowed to “drive” but I’m sure you knew what I meant!

I’ve been lucky in a lot of respects in that I’ve met some wonderful people along the way. People that I probably would not have met had I not lost sight. People I am both grateful and honoured to have as friends. Some came into my life just a few months before I lost sight and those I’ve met along the way. I know I wouldn’t have come through these last twenty years nearly as sane without them!

The last twenty years have not been easy by any stretch of the imagination but since when were we ever promised a smooth ride in life? I’ve also lost more sight over the past years – mostly due to my corneas which are severely damaged from my childhood surgeries. I’m not a suitable candidate for any of the new treatments. With the way technology is changing, maybe someday I will be but I’m not holding my breath. I’ve learned to do a lot of things for myself – including using a computer. I’m also getting better at asking for help in various areas of my life when I need it.

If I could go back and get to the doctor sooner and save some of my sight I would – but only if I could also keep some of the most amazing people that I’ve been lucky enough to know.

Yeah, I know life doesn’t work that way – but I can dream can’t I?


1 comment:

Allison said...

Lovely post D! From your words I can tell that you have indeed had a journey of a lifetime, I wish you all the best and success to come. I know it isn't always easy but as you said you can dream! Love Allie!