From Vision to Blindness – My Personal Journey through RP

From Vision to Blindness – My Personal Journey through RP

Karyn working her guide dog with peace fingers and smiling

It’s raw, it’s real and it’s mine!

Let’s get straight to the point! I am blind, no if’s and’s or but’s about it. Not a Person with a Visual Challenge, straight up totally blind! But I wasn’t always so dramatic! I have lived with a visual impairment my whole life. I have a hereditary, degenerative eye disease called Retinitis Pigmentosa. This eye condition is the leading cause of blindness globally and affects 1 in 4500 people. So, I guess if you know a lot of people, you may know someone who is affected with RP! And if you are reading this, maybe you know me!

I was 4 years old when my mother noticed I was terrified of the dark and missing visual cues. She had me to the optometrist who suspected something wasn’t right and referred us to the ophthalmologist, who confirmed, indeed, I  probably have RP. I under went some invasive tests over the following years, including a electrical retinalgram, where, at the age of 6, the specialist attempted to place electrodes, like contact lenses, into my eyes that, at the time, seemed bigger than my head. Needless to say, they didn’t conclude their testing and my 6 year old self won that one. It didn’t change the outcome.

RP often progresses from a loss of night vision and peripheral vision, due to the degeneration of the rod cells of the retina. For many, it will eventually erode the cone cells in what is referred to as the macula. By the time I was 11 I had lost enough peripheral vision to be registered with the Canadian National Institute for the Blind (CNIB) with about 20 degrees of remaining side vision. The average person can detect light and movement up to 180 – 190 degrees around there head.

At 15, I had 10 degrees and at 21 I had 3. I made my way through school to become a Registered Massage Therapist with only a pinpoint of clear tunnel vision remaining. There was a sense of urgency in my early 20’s that I needed to secure a career manageable for sight loss. I was determined not to become society’s burden, a narrative I still defend constantly trying to prove my worth. My career as an RMT has been not only fulfilling but has awarded me a lifestyle of financial autonomy. For this, I feel accomplished. I have more recently completed my certificate with the Institute of Integrative Nutrition, along with Somatic Coaching training and have expanded my work into health and Wellness Coaching. I am passionate about supporting people to create the highest levels of well-being and limitless possibilities in their lives!

After the birth of my children in my 20’s, the last of my sight vanished, as RP took what remained of my usable central vision. I reached the advanced stages of RP by the time I was 28. My children were my joy. They still are!

Ultimately, I was losing everything I thought I was at a time most young adults are trying desperately to establish who they are. Slowly, I felt stripped of my identity and faced with surrendering to my real limitations. Who was I to become after it was all gone? How would I manage?

Inevitably some of my capabilities, interests and even values did and had to shift. And I still am shifting and changing to meet my experiences. I am still learning and growing and exploring who I am! This is part of being a dynamic human being!

The journey through loss and grief is vulnerable, no matter what shape it takes for any of us. I had no choice but to meet every stage of my failing sense of sight where it was at. It would take me years to tease out the understanding that hating my blindness resulted in not completely loving myself exactly as I am. Surrender and acceptance have become my allies through this process. Consider when we fight against something that is truly out of our control the only result will be suffering. I’m not willing to perpetuate my own suffering. And this isn’t to say that anger, resentment and deep sadness doesn’t rear its ugly head now and again. It does. And when I find myself in fetal position after a little pity party, I pick myself up, shake it off and carry on because I have way too much living left to do to sit around feeling sorry for myself!

There was a time in my younger years that I sugar coated this grief by saying“what doesn’t kill ya makes ya stronger” or “it was my destiny and the cards I was dealt” or “I guess I had lessons to learn in this life” or my personal fave “God only knows what I did in my past life to deserve this fate, I must have been horrible!”.

In my early 40’s I took on a more real and daring declaration on my experience of blindness and it goes like this:

“Being blind totally f**king sucks and I am not going to pretend that it isn’t hard…and, equally so, I have a rich and fulfilling life! The 2 are not mutually exclusive.”

So, yeah, I’m over sugar coating or feeding the romanticism of being some fortune telling, aura reading superhero with magic powers that go above and beyond the world of the visually privileged. I had a waiter tell me once that he would love to be blind because it would be such an enlightening experience. Hmmmmmmm…

Let me share with you some commonly asked and often misguided questions about being blind (disclaimer: There are no stupid questions, only curious people)

  • Q: (This one is probably the most ubiquitously asked) Your senses must be so heightened?

A: Yes and no. Physiologically, it is very possible that your senses are just as sharp as mine, the difference being, I use all my senses for information while you draw on the sense of vision for most of yours. Research shows that the pathways in the brain are thicker, especially auditory, in people with vision loss. In fact, we use all of our senses much more than we are consciously aware of, for the sighted they are more of an alert system, for me it is the way I “see”.

Challenge: Spend some time in your backyard with your eyes closed. How long does it take for you to hear the sounds around you? What do you smell? Can you feel your body as it sits or stands and the air brushing your skin, what is the temperature? Tune in!

  • Q: (One of my personal faves) How do you know where I am, you are looking right at me, even though you can’t see me?

A: There is a hole in your face that makes sound, it is hard to miss… Would you rather me look at the ceiling?

Challenge: Have a conversation with someone with a blindfold on, where is your attention directed?

  • Q: You must be such a good massage therapist because you can’t see?

A: Yes, yes I am! (Toot toot!)

  • Q: How do you match your clothes so well?

 A: Hmmmmmm…I’m a simple kind of girl, you know, a pony tail, jeans and solid coloured T-shirts and I’m good to go. I’m not a fashion queen! I’ve been called out by the fashion police (my daughter) on occasion though!

  • Q: OMG, how do you cook and not cut yourself with a knife?

A: I love making sighted people twitch as I yield a sharp knife more confidently than many sightees, kind of makes me proud! Knock on wood, I haven’t lost a digit yet! But be fair warned, stay out of my way if I’m moving around the kitchen with hot pans, and for heaven’s sake please leave my kitchen clean, I am much more efficient when my space is organized!

  • Q: Did you see, errr, I mean, watch, err, I mean, ummm, did you listen to that (fill in the blank)?

A: Peeps, it’s okay!  Use sighted verbs and nouns, I do! Remember seeing is perceiving! I am not offended!

  • Q: I don’t know how you do it. I can’t imagine being blind!

A: You just do it because there is no other choice! Sometimes I still think, “waaaaa, like, I’m totally blind, wtf?”. I wake up in the morning and, what do you know? Yup, still blind! Sometimes it’s a trip!

  • Q: How do you email or text me? In fact, how are you even writing this blog?

A: Technology is incredible! If it wasn’t for the advances in voice over software for the visually impaired, I surely wouldn’t be doing half of what I do today! Deep gratitude for this!

  • Q: Can you see anything or is it, like, totally dark?

A: Yes, but only light perception. I can tell it is day or night or that a light is on. I love lightening storms at night when I catch a flash! If I am looking right at you, there is nothing but static. This is the best way to describe it, it is like the snowy screen after the TV stopped broadcasting after midnight!

  • Q: What are your dreams like?

A: Dreaming is wild! Sometimes I have frankenstein dreams, pieces of visual memory sliced into thoughts, sensations and conversations with those who show up in my dreamtime. More often than not, though, I dream without any images.

Another question I often get asked is one that is more difficult to answer. “ do you think it would be easier to been born blind and never seen at all or to have seen and lost?”. To this I answer that I am grateful for all the beautiful visual things I have in my memory and, as difficult as it has been to let vision go, it’s gone and I know what I had. I have had people say to me that I am lucky I can’t see because I don’t have to see all the ugliness. I guess that is just the way that person saw their world. I’m one of those bleeding hearts who likes to find the wonder in it all!

I had an amazing opportunity to sit and have a conversation with one of my ALL TIME FAVE musicians, Michael Franti, several years ago. He asked me what the hardest part about having no vision was. I replied with not being  able to read like I could, to see nature’s beauty and the smiles on my children’s faces. He then asked me what the best part of being blind was and I replied that it doesn’t matter to me how someone looks, or how they are dressed. Whether they are fat, skinny, black, white or purple or have a tail. What matters to me most is how their soul shines through. That evening, when Michael played his concert, he spoke to his audience about our conversation from earlier that day and dedicated a song to me called  “when I see you in the morning – I hope I see you in the light”. It was a highlight moment for me!

Like so many joyful moments in my life, they wouldn’t be highlights if I wasn’t there to receive. As challenging as vision loss can be, I am blessed for all the wonderful and special people, places and experiences that have made me who I am today! And would I be me if I hadn’t lost my sight? Maybe some parts, but probably not. And I’m just fine with that!

if you have any other questions about blindness, feel free to leave a comment and let’s talk more about it!

8 thoughts on “From Vision to Blindness – My Personal Journey through RP”

  1. thank you so much for sharing your experience, Karen…your courage, honesty, and strength are inspiring me. with gratitude, Karuna

    1. thank you for taking the time to comment on this post! It warms my heart when I know that it has reached so many and creates inspiration! We all hold up each other!

  2. Karen…Very engaging and informative! …but I will protest that you modestly understate your accomplishments ! I’ve known you when you have had to pack up and move homes three times…and each time you were the one who did most of the packing and unpacking and most of the housecleaning ! I wasn’t there on a particular day, but I know that once in a windstorm you were collecting your empty garbage cans from in front of your house and the wind grabbed a large can, rolling it down the hill and you, without a walking stick or dog, chased an empty rolling garbage can for a block and a half until you located it. On several occasions when I was going places with you, we’d come out of a venue and I no sooner had said, “Where’d we park?” that you not only knew precisely where I parked the car but you led me there ! You also quickly learned how to become a very competent dancing partner attending lessons as the only unsighted person. And your intelligent sense of humour could lead to a successful career in stand-up comedy… for example that time I arrived at your home and said, “I guess I didn’t have to comb my hair when I visit you” to which you replied without missing a beat, “You have hair?” Also, your memory is astounding…I’ve seen people come up to greet you, whom you had only met once and you always remembered their names from their voices while most of us can’t remember names from their faces. You are formidable, Karen, are an amazingly positive, knowledgable and talented person and I wholeheartedly recommend your health services to everyone ! sincerely from your best looking pal, Peter.

    1. it is friends like you that have made my life interesting and rich! I accept your additional praise with humility! Thank you, Peter! we have had many laughs and many fun dances on the dance floor, and I thank you for that!

  3. Thank you Karyn for sharing yourself so candidly — with such honesty, humility and humour. I love you, dear friend.

  4. I love your blog! I, too have been living with RP for many years and I truly believe that there will be a cure some day! Keep writing and live your life with JOY!

    1. thank you! It is my passion to support people to live their life to the fullest and with that joy! What else do we have?

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Inner Vision Health and Wellness Karyn Lawson RMT INHC