Message To My Younger Self: Carrie

January 10th, 2014 by FFB Canada

1. Can you share with us what retinal eye disease you have and when you  were diagnosed?

I have Usher Syndrome (type 2), which is hearing loss combined with retinitis pigmentosa. I wasn’t correctly diagnosed until age 24 but my symptoms started when I was around 16 with night blindness. My hearing loss began at birth, and this was diagnosed at age 2.

2. Did vision loss have any impact on your education choices?

Not really – I always knew I wanted to go to law school at some point, and my strengths are in writing, research, and translating complicated issues into plain language. Although I knew it would be challenging, a law degree seemed like a doable degree with vision and hearing loss.

  1. What do you do for a living? How have you adapted your career to your vision loss?

I am just finishing up my law degree in about two weeks. I have secured an articling position at a law firm in downtown Vancouver. Articling is a one year “apprenticeship” requirement to become a lawyer that involves a 10 week bar exam prep course, writing two bar exams, followed by 9 months of work at a firm where I’ll be supervised and mentored by other lawyers.

  1. Can you share with us how vision loss has impacted your relationships?

My vision loss has affected the kinds of social activities I do and the types of friends I attract and seek out. I was never much of a partier, but now I think carefully about the social event and whether I will be able to participate, have fun and gain anything from it. If not, I don’t go. It’s a balancing act of determining whether I should push myself a bit and go, or stay in and rent a movie or something. I have a smaller social circle than some people but the friends I do have mean a lot to me, and they take the time to understand my condition.

I was with my partner (who is now my husband) before and after I got diagnosed, so he has supported me through not understanding what was happening to me, to coming to terms with the reality of slowly going blind. We have a very strong relationship and it has only gotten stronger through the cycle of change, adjustment, loss, grief, and acceptance that is typical with a degenerative condition.

  1. It’s no secret that vision loss can lead to anxiety and depression. How do you maintain emotional balance?
  2. I have definitely experienced anxiety and have developed many different coping mechanisms that I use to reduce these feelings (although I admittedly need to get better at this).

    One thing I’ve found really helpful is maintaining some level of fitness and physical activity. Once I could no longer safely participate in team sports such as soccer and field hockey, I had to figure out what else would work for me. My latest passion is swimming – I’m in a para-swimming group, and there’s a whole hodgepodge of different disabilities represented. They have been awesome at catering to my needs. I also walk a ton with my guide dog and this is super important as I get fresh air and forced exercise every day. I want to incorporate yoga into my life and try meditation but I have yet to find a truly accessible yoga class – however, I’m going to keep trying until I find it.

    I also feel better when I eat really well. I switched to a primarily vegetarian/vegan diet quite a few years ago and I try to make most of my meals at home and avoid junk food.

    Another thing I do is control my environment as much as possible. For example, I will pick the restaurant that we’re going to, or I’ll get to the venue early so I can find an ideal spot to sit or scope out the layout. I’ll look up the menu online in advance so that I don’t have to struggle in a dimly lit space. I am highly selective of the type of events I go to, and if it’s a large crowd, I’ll make an appearance and then when I find myself getting too tired or frustrated, I just go home – and usually feel very relieved and happy with my decision. Another great way to control your environment is to host your own party, where you can have just a couple of friends over and share food and beverages in a more relaxed, familiar setting.

    I’ve also sought outside help when I felt too overwhelmed or when my immediate support group wasn’t providing the answers I needed. For example, I experienced major anxiety when I decided to start using the white cane, and this was probably the biggest emotional hurdle I have ever experienced. I finally went and talked to a counsellor about it to figure out how I could incorporate it into my life without feeling so ashamed and unworthy. It was still an incredibly difficult transition but the counsellor did help me.

    I’ve also found it useful to connect to other active, youthful, involved and fun people who have Ushers and RP. I’ve found them in my community, through blogs, and Facebook groups.

    1. What accessibility aids can you not live without?

    My sweet and adorable guide dog, Casey! I went to Guide Dogs for the Blind in May 2012, and she has been an amazing addition to my life. She has increased my confidence and independence and I walk MUCH faster with her than I did with the cane.

    I also love my Macbook Pro laptop and Iphone – I used my computer all through law school, and I really appreciate the zoom features and high quality screen. I haven’t embraced all of the other tools yet but will get there at some point.

    1. Our 2012 Toronto Vision Quest Youth Panel agreed that we all ‘hate’ 3D movies, revolving doors and garbage days. What’s your pet peeve?
    2. I hate it when stairs just suddenly appear where you least expect them – like in the middle of a restaurant.

      Tall glasses with stems – I like my drinks in sturdy tumblers!

      My other pet peeve is off leash or out of control dogs and their oblivious owners.

      1. If you could go back in time and talk to your younger self about vision loss, what would you say?

      Although you may not feel like blindness is “sexy” or “cool”, you can still be a sexy, cool, fashionable, hip, forward-looking, compassionate and quirky individual with vision loss.

      Vision loss is not shameful. There is stigma and fear about blindness in our society. You need to figure out how to move past the shame of losing your sight in order to take ownership over your life. By being your unique, individual, and empowered self, you break down stigma, fear and misconceptions about blindness. I challenge you to be unapologetic about your vision loss. Do not apologize for not being able to see. But at the same time you need to put in the work to maintain your independence and dignity. Ask for what you need.

      You do not have to be other people’s inspiration. You are not a made-for-tv movie. Make decisions with purpose, care and thought. Your vision loss should never be an excuse to not try something but sometimes it will limit you and that’s okay. There are alternative ways to do things that might work but sometimes you do just have to accept your limits and move on.

      There comes a point where you can no longer pretend that you are fully sighted. You also start to care less what other people think of you as you get older. This is very liberating.

      Know that people older than you and in positions of authority will often be ignorant and clueless about blindness. Do not let their status scare you into silence. You know your condition the best. Learn how to communicate assertively.