When I was first diagnosed with Retinitis Pigmentosa (RP), a degenerative eye disease affecting the rods and cones in the retina, I was shocked but not surprised. My sister was diagnosed a decade earlier. This condition is hereditary and leads to eventual total blindness. Some forms of this condition are very gradual, as was my sister's and my prognosis, or very rapid, resulting in blindness in a noticeably short period. I am in the latter stages of the disease, and over the last five years, my vision has become one of seeing only light and dark. I can tell where the windows are at home but not what the neighbours are up to on the other side of the glass.

 

I remember how the disease changed my vision before I was diagnosed in the 1980s. I held a driver's license. In fact, I was a transit driver a few years before in Calgary. When I drove out of my underground parking, my eyes would explode with a cacophony of multi-coloured, ameba-like structures. They would swirl around my central and peripheral vision. These coloured blobs would rapidly exit from my field of vision, some undulating and then evaporating, others swimming out and disappearing in an orderly procession. This experience was disturbing, to say the least. I was in my mid-twenties and stopped driving when I was told I had Retinitis Pigmentosa. This act was the hardest thing I had to do.

 

Another common symptom of my condition is night blindness. As the cones and rods die off, the ability of the retina to perceive light and transmit that information to the visual cortex diminishes. Low-lit conditions are challenging, whether outside at night or in a low-lit room.

 

Looking back, my earliest indication of a problem with my vision was during high school while out with some friends at night. And no, we were not chemically recreating. We ran into a field that was surrounded by a barbed wire fence. I did not see it. Let's say I had a couple of hang-ups during high school, and that night proved to be a literal one.

 

After diagnosis, you could say I was "high vision, low vision.” My visual fields were contracting but very slowly. I became very anxious to get a leg up on my eyes. I contacted The Canadian National Institute for the Blind for mobility training. My training involved using a white cane to navigate the streets and other areas. Because I could see at the time, I had to be blindfolded while training. This experience was a 35-year look into my future. I did not even have the luxury of a DeLorean for my travel into the future.

 

I was reintroduced to my ears when I was blindfolded. My hearing did not improve, which is too bad. I am a bit of a gossip, and any extra hearing ability would have helped me gain some juicy tidbits! But I did become more aware of my hearing.

 

One aspect of that first training day that I will never forget was the sound of my environment. The wind was especially memorable as I moved down the sidewalk. As I passed each of the houses, it was increasing and decreasing in volume and pitch. It helped form a picture in my mind of my environment.

 

As my loss of vision was gradual, I was reluctant to use the white cane, even to let others know I had a visual impairment. I soon discovered that an annoying aspect was that many people were confused about a man wearing glasses and using a white cane. I am nearsighted and have been since I was fifteen. I was quickly tired of explaining to perfect strangers that I was not "blind" but had "low vision.” People think you are either blind or not blind. It's not black or white. There is a whole spectrum of vision loss out there.

 

Some people had no idea what the white cane was. Some asked if it was a pool cue. Others asked if it was a golf club. I had to tell those who thought it was a golf club, "You should see my handicap!"

 

As an aside, sometimes my low vision proved helpful. When I encountered annoying people, I could shift my eyes a wee bit, and they would disappear. I blocked them from my sight where the Retinitis Pigmentosa was creating blind spots. It felt a bit like a superpower making people disappear like that.

 

So for a long time, I did not use the cane. It was my secret companion, and I mostly carried it around folded up. I used it for its intended purpose sporadically. I guess I thought the cane was more of an insurance policy rather than a mobility device. Intellectually, I knew that I would need it one day, but picking it up in those early years was an admission that I was going blind. My disease was progressing slowly. I could manage without it.

 

And then the sun would set, and my lack of night vision would remind me of my disease.

 

Overall, it took me 22 years before I embraced the darned cane. It is no longer just a secret companion, an old friend I call up now and then. My cane is a new appendage, just like an arm or leg. One I cannot do without as I move through my life.

 

When I was first diagnosed with Retinitis Pigmentosa (RP), a degenerative eye disease affecting the rods and cones in the retina, I was shocked but not surprised. My sister was diagnosed a decade earlier. This condition is hereditary and leads to eventual total blindness. Some forms of this condition are very gradual, as was my sister's and my prognosis, or very rapid, resulting in blindness in a noticeably short period. I am in the latter stages of the disease, and over the last five years, my vision has become one of seeing only light and dark. I can tell where the windows are at home but not what the neighbours are up to on the other side of the glass.

 

I remember how the disease changed my vision before I was diagnosed in the 1980s. I held a driver's license. In fact, I was a transit driver a few years before in Calgary. When I drove out of my underground parking, my eyes would explode with a cacophony of multi-coloured, ameba-like structures. They would swirl around my central and peripheral vision. These coloured blobs would rapidly exit from my field of vision, some undulating and then evaporating, others swimming out and disappearing in an orderly procession. This experience was disturbing, to say the least. I was in my mid-twenties and stopped driving when I was told I had Retinitis Pigmentosa. This act was the hardest thing I had to do.

 

Another common symptom of my condition is night blindness. As the cones and rods die off, the ability of the retina to perceive light and transmit that information to the visual cortex diminishes. Low-lit conditions are challenging, whether outside at night or in a low-lit room.

 

Looking back, my earliest indication of a problem with my vision was during high school while out with some friends at night. And no, we were not chemically recreating. We ran into a field that was surrounded by a barbed wire fence. I did not see it. Let's say I had a couple of hang-ups during high school, and that night proved to be a literal one.

 

After diagnosis, you could say I was "high vision, low vision.” My visual fields were contracting but very slowly. I became very anxious to get a leg up on my eyes. I contacted The Canadian National Institute for the Blind for mobility training. My training involved using a white cane to navigate the streets and other areas. Because I could see at the time, I had to be blindfolded while training. This experience was a 35-year look into my future. I did not even have the luxury of a DeLorean for my travel into the future.

 

I was reintroduced to my ears when I was blindfolded. My hearing did not improve, which is too bad. I am a bit of a gossip, and any extra hearing ability would have helped me gain some juicy tidbits! But I did become more aware of my hearing.

 

One aspect of that first training day that I will never forget was the sound of my environment. The wind was especially memorable as I moved down the sidewalk. As I passed each of the houses, it was increasing and decreasing in volume and pitch. It helped form a picture in my mind of my environment.

 

As my loss of vision was gradual, I was reluctant to use the white cane, even to let others know I had a visual impairment. I soon discovered that an annoying aspect was that many people were confused about a man wearing glasses and using a white cane. I am nearsighted and have been since I was fifteen. I was quickly tired of explaining to perfect strangers that I was not "blind" but had "low vision.” People think you are either blind or not blind. It's not black or white. There is a whole spectrum of vision loss out there.

 

Some people had no idea what the white cane was. Some asked if it was a pool cue. Others asked if it was a golf club. I had to tell those who thought it was a golf club, "You should see my handicap!"

 

As an aside, sometimes my low vision proved helpful. When I encountered annoying people, I could shift my eyes a wee bit, and they would disappear. I blocked them from my sight where the Retinitis Pigmentosa was creating blind spots. It felt a bit like a superpower making people disappear like that.

 

So for a long time, I did not use the cane. It was my secret companion, and I mostly carried it around folded up. I used it for its intended purpose sporadically. I guess I thought the cane was more of an insurance policy rather than a mobility device. Intellectually, I knew that I would need it one day, but picking it up in those early years was an admission that I was going blind. My disease was progressing slowly. I could manage without it.

 

And then the sun would set, and my lack of night vision would remind me of my disease.

 

Overall, it took me 22 years before I embraced the darned cane. It is no longer just a secret companion, an old friend I call up now and then. My cane is a new appendage, just like an arm or leg. One I cannot do without as I move through my life.

 

The importance of my cane was made clear to me last June. I attended my stepson's wedding, and the cane's elastic snapped, turning into four pieces of useless tubing with a handle. It was like a puppet with its strings cut. My brother-in-law came to the rescue. We managed to tie the cord together. I could not collapse the cane anymore, but I could use it to maneuver about without knocking over the other guests. The experience of potentially not being independent and finding my way was disconcerting – especially in unfamiliar territory.

I think that many Canadians can relate a little to that loss. How did you feel when your cell and internet services were suddenly "broken" on July 8th, 2022? Did it feel like a total disaster? It was a digital white cane moment. The realization of our dependence on these essential services may have been a complete shock. That is how I felt when my cane broke. The emergency I had that day was short-lived but still unnerving. I had to face the reality that I do need my cane. In fact, I need two of them - one to use and one ready to use in the event of a total breakdown.