The following post was written by Anne, an incredible woman in the blind and visually impaired community. Anne recently placed an order for our new custom braille products and we instantly fell in love with the custom phrase she chose! In this post, Anne shares her journey with sight loss and the meaning behind her custom phrase "purpose in view."
I am a wife and mom to three adult children who was diagnosed in adulthood with cone rod dystrophy.
I had been working in the healthcare field for over 25 years and always advocated for patient care. I had felt that something “wasn’t quite right” with my vision. It took some years and lots of self-advocating and persistence to finally get a referral to get the diagnosis. Once I got the diagnosis it was sad but also a relief because then I knew what I was dealing with and I could move forward with my life. I was proactive in enrolling with CNIB. I took orientation and mobility training, basic kitchen skills workshops and started the process for workplace accommodations. At home we were undergoing a much needed renovation and I began to study universal design and so I began to incorporate those principles in my home so that we could have a home that we could age in place and support my vision loss.
On January 1, 2019 I woke up with a migraine-like headache that to this day is still ongoing. I was diagnosed with NDPH (New Daily Persistent Headache). I reached the lowest point in my emotions as I was literally living in darkness and no longer able to work.
After I was officially diagnosed with cone rod dystrophy, my personal goal was to watch sunsets wherever I got a chance to travel to. The first epic one was when our family hiked the Grand Canyon and ended the day watching the sunset. This photograph was taken by our guide who put me on the edge of a cliff to get this shot!
The pandemic has magnified the struggles of the visually impaired community and those isolated by chronic illnesses. I also saw the struggle of many businesses and wanted to find some small way to help.
And so my Instagram account, Purpose In View (@purposeinview), was born. I wanted to start something to make a difference and focus on seeing and finding beauty in everything while making an emotional connection. I wanted the beauty to be accessible for all by providing descriptive image descriptions and including alt text descriptions. I’ve been learning so much in this process. I’ve also recently learned that screen readers cannot identify the individual words in a hashtag without camel case so now I have incorporated those into my hashtags to make them accessible to all users.
This photo really struck a chord with me. I had been having a really tough pain week and my eyes were so sensitive. I finally had a moment where I was feeling better and it was snowing outside and I decided to take the opportunity. Once I reviewed the photo, it really hit me how much this photo represented me. The black t-shirt symbolizes the darkness while the silver Swarovski pearls represent the inner beauty in me and the clarity in forming the words “purpose in view”. From that the glow and my natural playfulness and happiness radiates as I am tossing the snow in the air.
Much of my time is spent in darkness and indoors managing my pain and also my sensitivity to light. It is in those times that the creativity in me still exists. In those brief moments that I have when I am feeling better I seize the opportunity and that’s when I grab my iPhone and tripod, find the light, and try to capture a photograph. Sometimes I can get the help of one of my kids too!
Sharing my journey has also helped to improve my own emotional well-being and increase my resilience. I hope that I can also provide hope and light for someone along the way.
My long-term goal is to thrive with vision loss - at home, in self-care, mental health and fashion.
My "Purpose in View"
My vision loss is a journey
That although genetic in nature
And an outcome of some level of blindness,
I am the author of my own narrative.
I can change my own perspective
To aspire to find my purpose in view.
The opposite of blindness is view.
Two of my favourite quotes that guide me:
- "This is a wonderful day. I've never seen this one before." - Maya Angelou
- "My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor and some style" - Maya Angelou