My vision loss journey. It is a journey that is mine, one that only I can experience from the inside. It is a journey that is unique to me, just as everyone else is on journeys that are unique to them. I am blessed to have the love, support, and encouragement of my husband, family, and many close friends.
Trying to explain to sighted people what I can or cannot see is harder to do than one may realize. Both for myself, and for any persons out there that this may help, I am going to give my best effort to explain this and other experiences of living with vision loss or blindness.
Over 30 years ago, I was diagnosed with the eye disease Progressive Cone Dystrophy and diagnosed legally blind at that time. Today, I have no central vision remaining. My current vision is limited to 10% peripheral vision with blind spots and floaters interrupting it. My vision loss journey will one day leave me without vision, completely blind.
There are many factors that can alter my ability to identify what I am looking at with my remaining peripheral vision. Colour, contrast, object borders, lighting, eye fatigue, distance, size, and other factors all impact and change my ability to see things, and how I see them.
The Beginning and The Middle
As a teen, I wore glasses. At the time of my diagnosis, my vision was 20/200 while wearing these corrective lenses. 20/200 vision meant I needed to be 20 feet away to see something that a person without vision loss can see from 200 feet away. I was no longer allowed to operate a vehicle, and that was the beginning of my life adjustments. Oh, how I wish I still had that amount of vision!
From 1992 until 2015, I navigated life in this sighted world by pretending that I was sighted. I wasn’t ready to accept that blindness was my path in life. I wouldn’t use a cane to help me find my way as I didn’t want to draw attention to myself, didn’t want people staring at me, and I didn’t want to be accused of faking having low vision or blindness, because I did still have some useable vision. So, I continued struggling with most every step, every single day, while raising my daughter as a single Mom and working as a waitress. I didn’t know any other people with blindness or low vision, nor did I feel the need to seek them out and make a connection. It’s been a gradual deterioration of my vision over the last 30 + years, accompanied by a gradual development of acceptance. In 2014, I had a rather large jump in the diminishment of my vision which suddenly became 20/800. That meant that what other people without vision loss could see from 800 feet away, I had to be within 20 feet to see. At this time, I experienced overwhelming depression. I met with my doctor and decided to take a course of anti-depressant medication and talk with a counselor to help myself through this period.
My acceptance journey began in earnest the following year in 2015. I attended a “Getting Together with Technology” meeting through the Canadian Council of the Blind. There, I met two women who were both blind, and who both exuded confidence. Danielle and Elizabeth were both kind and inspirational to me. They told me their stories of the training that they received at the Louisiana Centre for the Blind (LCB) in the United States, bringing to my awareness that such a place existed and could help me. Unfortunately, a similar or equal program was and is not available in Canada. Full of hope tempered with anxiety and fear of the unknown, I took the initiative to contact and seek admission to, and then arrange to pay for, travel to, and live at the LCB for nine months of intensive rehabilitation and training. In 2016, with that same mixture of hope, fear, and anxiety and a long day of air travel, my LCB experience began. With the phenomenal support and teaching I found at LCB, I began to shed the mental cocoon I had constructed around my vision loss, change my life for the better, and develop the confidence to live my best life. LCB’s comprehensive training prohibited the use of any vision, no matter how limited it was. This rule was inflexible. Students who were not totally blind, who had even the slightest bit of light perception, wore blindfolds (learning shades) throughout their training. Therefore, we accomplished every task, learned every skill, in complete darkness. To say it was challenging would be an understatement. Learning to confidently navigate city streets with my white cane while wearing the blindfold that kept me in complete darkness was just one of the countless instrumental, life changing skills that I learned at LCB to help me live fully and independently as I prepared for a future with complete vision loss.
Needless to say, for myself and for others with low vision or blindness, ordinary tasks are more difficult to navigate and accomplish than for someone who has full vision. People with low vision or blindness must adapt and find alternative ways to accomplish these tasks, which is where what I learned at LCB was again, instrumental for me. Independently cooking, cleaning, shopping, minor household repairs (I can remove, clean, and replace a P-trap under my sink!), laundry, catching a bus or taxi, navigating city streets, going for a nature walk at the beach, putting on matching socks……all things that the sighted world does with benefit of sight, LCB taught me to do without benefit of sight. There was much, much to be learned.
Thanks to these learned skills, today I am free as a butterfly, and you can read about my journey through that training here:
If Canada were to provide just one full-time training centre like LCB, we wouldn’t have to leave our country for this vital training that is necessary to allow us to live our lives independently, without sight. Additionally, the exchange rate of the dollar increases the cost for Canadians to travel to the States and pay for room, board, and tuition. This speaks to another aspect of the accessibility problem that we face. Having this training allows people with blindness and vision loss to function not only in their private lives, but also as employable citizens contributing to the Canadian economy instead of being forced to rely on the social safety net to survive.
A few years ago, my vision further decreased, requiring my fingers to be held three feet away in order to see and count them. Today, I see best at eight inches from my nose. No closer and no further, it’s that exact.
The Present
When looking at my husband up close, like looking into each other’s eyes after a tender moment, if he is closer than eight inches, he has a “Cyclops” eye – just one big eye that occupies his whole face. If we are sitting next to each other further than 8 inches apart, I cannot recognize him by his features.
Sometimes I see things and then in the next breath it is gone.
I choose to live my life optimistically and try to find the good in everything. Despite this positive attitude and confidence in navigating life with little to no vision, I also have moments of feeling intense grief, sadness, and despair. Every little morsel of sight that I lose now is a significant drop and it hits me hard. When you lose just 1% it is not much when it is out of 100%, but that same 1% out of 10% is proportionally significant, and very noticeable. I sometimes feel sorry for myself, feel anger and frustration, and think “Why me??” It’s natural to have all of these feelings that accompany change that we didn’t choose and don’t want. It’s not dissimilar to the stages of grief involving the loss of a loved one.
My right eye is my dominant eye, so over the years I got used to closing my left eye when trying to see something. My right eye has now deteriorated to the point that mostly what I see is what one would see when opening the dishwasher or oven and your glasses steam up. Though it is not constant, it is now a regular occurrence that I cannot see my hand in front of my face if only using my right eye. Where I had been managing to read large print using a high magnification lens and was getting by, I can no longer do that. Doing tasks - especially work related as I operate my own company, Diverse Abilities Programs and Training - is taking longer and as I make more mistakes in my writing, I find myself feeling discouraged. It takes me a long time to read and write things, certainly longer than I’d prefer. I do use the voice over accessibility features on my smart phone to assist me. These features have the ability to read to me most things that are in accessible formats. I am able to dictate my texts, emails, or anything I want to take notes by. Smart phones have come a long way in the last decade when it comes to accessibility for people with disabilities and no doubt that trend will continue. For now, talk – to – text is helpful, but imperfect. There are other programs available that I’m not currently familiar with using, and more are always being developed.
I know myself and I know I will bounce back from this, but just now I am finding it hard. Some people see their cups as half empty, some as half full. I prefer to see my cup as refillable. Sometimes it’s empty, like now.
As someone who has been experiencing sight loss over three decades of slow deterioration, I generally go about my daily routines not thinking about what I see or don’t see, because what I see is my normal. There are times that frustration sets in as I look at something, because I just want to see / know what it is, and then move on. I can be looking at an object one moment and the next moment it is no longer there. This happened to me the other day. I was laying on the couch with my legs on my husband’s knees as he was sitting, rubbing my feet. We were just talking, having a conversation. The next thing I know, my low vision decided that he had no head at all! I could not focus to see my headless husband, so I burst out laughing.
It can be quite comical sometimes what my brain interprets what I may be looking at or not.
We can be driving and I know there are cars in front of us or going past us, and at times and in a split instant there are no cars to be seen. Sometimes out of the corner of my eye, something will quickly appear. I need more time to focus on what it could be, so often I can’t tell what something is and it startles me so I jump or shriek.
I wear sunglasses a lot of the time as my eyes are light sensitive. The way I explain that light sensitivity is “Have you ever got up in the night and turned on the bathroom light only to find it super bright?” That is the energy I feel if I do not wear my sunglasses. Overhead florescent lighting is terrible for me. Blinking lights also bother my eyes as well as not being good for my epilepsy, either. So, sunglasses are a frequent tool that I use to limit exposure to those things. Another way that I’ve described my vision is:
“You know when you first wake up and look at your alarm clock or your phone to see what time it is and it’s quite blurry and takes a few seconds for your eyes to adjust?” It’s like that, but all the time.
Over the years, out of necessity, I’ve found alternative ways of navigating life. New ways of doing things as the way one does things using vision can’t be done the same when there is low to no vision. When you are transitioning from having full vision to no vision, every step of the journey presents new learning curves.
Just today I had a new experience with vision change. There is a flashing light in my right eye. It happened about 6 hours ago. Seemed like a flashlight shining in my eye. As I put these words down, the flashing light is happening more often. Went from a flash every 30 minutes to every 5-15 blinks. It is super distracting. As I concentrate on it now, it looks skinny like a lightning bolt in the top right of my right eye. It flashes in a crescent moon shape like a backwards letter C. I would be lying if I didn’t say I feel scared. I feel as it is happening that I am losing the last useable vision in my right eye.
I know I will be fine. I have learned the skills I need to move forward, but nevertheless, grief is part of this process. My belief is that we are never given anything we cannot handle, and that God chose me for this journey. Though emotions are high for me right now, I do try to live my life to the fullest. I just do it differently than when I had sight.
My vision loss journey is a journey only I am on. One which I am blessed to have the love, support, and encouragement of my husband, family, and many close friends. I use this knowledge to temper my feelings of grief and frustration, and to remind myself to be mindful and grateful for what I still have.
Gina