Today I saw an ophthalmologist for the first time in over a decade, and it felt like appropriate timing to (finally) settle on a blog name and start a blog that I’ve been humming and hawing about since last summer. The appointment this morning was a combination of interesting, depressing, and really not surprising. She explained how RP had affected my left eye, which no doctor had been able to do before, she informed me that I’m developing cataracts (apparently I’m no longer just an old lady at heart!), and her final advice to me was to enjoy my remaining vision while I can. Although she estimated that I should have some vision until I’m in my 40s, there really is no way to predict the progress of RP. While none of this information was overly shocking or unexpected, it’s always a wake up call to have a medical professional give you an expiry date for your vision.
But this first post isn’t about my appointment today. I wrote a first post about a week ago, and I’m just finally getting around to putting this blog together, so without further ado…
I have been legally blind since birth. When I was a child, I was diagnosed with Retinitis Pigmentosa (RP), a genetic, degenerative eye condition. For as long as I can remember, my vision had been the same and I was lucky because it was my “normal”. I had no idea what it was like to be fully sighted, so I didn’t know what I was missing out on. I had 26 years of relatively stable vision before the noticeable changes started.
Just over a year ago, I started feeling like small, but not obvious, changes had started happening in my vision. At the same time, I was having my “quarter-life crisis”… I had retired from my first career (ski-racing on the National Team) at 22, finished my B.A. in Psychology and Linguistics, and was ready to take on the world. The problem was that I had no idea where to start, and a Bachelor of Arts did not qualify me for ANY jobs. After a long summer of stress about my future and parental concern about my lack of direction, I finally decided I wanted to be a counsellor (which, of course, had been my original idea all along). I got volunteer experience, applied to various master’s programs, and enjoyed my transition year before grad school started. Little did I know the transitions I was preparing for.
The following summer, I was packing up and moving my life to Toronto. It was the process of packing that was my first wake up call to the changes in my vision. One day, my parents were helping me pack some boxes, and I realized that I couldn’t follow what was going where unless I was doing it myself. I had to stop my mom and explain to her that I had no idea where anything had been put in the last hour. While we didn’t discuss it at the time, my mom and I both had a moment where we realized the consequences of the slow deterioration of my vision.
I decided to get a white cane earlier in the summer, before that incident and before I realized the gravity of my vision loss. I knew small changes had been happening, and I thought a white can might be a good idea for moving to an unfamiliar, big city. At least to keep me safe while I was adjusting. I had no idea that this cane would become my lifeline, my new best friend, and I would get to the point where I didn’t go anywhere without it.
I moved to Toronto in July 2014, and spent a month setting up my apartment, getting used to the city, and finding all the places that I would need to travel to regularly. I met Natasha, my orientation & mobility instructor in Toronto, and she helped me learn how to navigate the big city. This was my first experience carrying my cane full time, and I was amazed by how helpful and considerate most people were. I will write more about my white cane adventures later.
The next time my vision loss blindsided me wasn’t until October, when I was halfway through my first term in grad school. I was sitting in an uninteresting evening class, looking at the prof, when I had the sudden realization that I saw the prof at the front of the room, but couldn’t see any of my classmates sitting across from me. I sat through the rest of class with tears in my eyes, willing myself to stay in my seat and fighting the incessant urge to run. I realized that one of the gaps in my vision had been growing without my awareness, and it decided to shout “hey, look at me” when I wanted to be learning and enjoying my education.
I thought this might have been a one-off event, but unfortunately I continued to notice new holes in my vision: they emerged one by one, over Thanksgiving, Christmas, and shortly after the New Year. These holes were scary and shocking at first, and I was constantly anxious. Walking around the city was no longer safe, and I was relentlessly startled by cars, cyclists, and even other pedestrians. Now that the startle response has settled, I still get surprised but I’m not dealing with constant panic anymore.
This process has been challenging, and eye-opening. While I would have never chosen for my vision to get worse, I have learned so much from this experience. I am stronger than I ever thought possible, and I have so much empathy for other individuals dealing with anxiety, depression, and other mental health challenges. I feel so lucky for the amazing friends and family in my life, and I appreciate them more than ever.
This blog will be about my adventures with vision loss, its associated challenges and surprises, and the unexpected joys that pop up where you least expect them.