Growing Up with a Sister Who is Deafblind

Growing up with my sister Alecia, I had little idea she was different than anybody else. Oh sure, I knew she was ‘sick’ -- that she had a rare degenerative disease that required many visits to doctors and specialists, and more than one trip to the famous-to-me SickKids Hospital -- but day to day, she was just my little sister, Alecia.

We grew in a very loving, supportive family. My parents had us young -- myself being first born while they were in their teens. My sister Alecia came four years later and then Jessica, eight years after me. My youngest sister, Emily, joined soon after Jessica. It was a full house!

My father was and is a master tradesman in drywall. The family business in our home town of Orillia is still going today in its fourth generation. My mother was a stay-at-home even while a changing economy started to make that difficult. My parents felt it important she be home to raise all of us. I only realized later, as an adult, what an awesome sacrifice that was. All of us kids benefitted from that daily motherly presence, especially Alecia who had special needs.

Despite our family being a blue-collar family, albeit a master in the trade, my parents were no less undaunted to learn as much about my sister’s disease and get her the most advanced medical and social help available to her to ensure her quality of life. They poured all their spare time and efforts into this while we kids grew up together, oblivious to the extraordinary circumstances of Alecia’s disability and my parents’ efforts to give her (and us) the best life possible.

Day to day, growing up with Alecia seemed rather normal to me when compared to other families. Good-natured sibling rivalry was rampant at our home. I remember one time I stubbed my toe and while hopping in pain Alecia howled in laughter at my expense. Don’t worry -- I showed her: As a little blind girl, my sister was a “mapper,” meaning she mapped and remembered where all the furniture was located in the house, to such a degree you would barely believe she had less than 10 per cent of her vision. Using this knowledge to my advantage, I rearranged the furniture in the living room and waited for her to come downstairs, laughing in revenge as she tripped over furniture she didn’t know was there. Antics and pranks like this between us were common and I developed a deep level of protectiveness over my sister; the kind of adolescent older-brother ridiculous logic that I could be mean to my sister, but no one else was allowed to be.

All the while, I didn’t think my sister was that different from anyone else. You see, my sister never really thought herself as blind and deaf, she just was who she was. Her day-to-day joy was unbridled and she was (and still is) a joy to everyone around her. Always with a smile, always willing to help to the maximum of her limited capacity and never complained about her station in life. Indeed, Alecia and her attitude about life stopped us dead in our tracks during the times when we siblings would moan and complain about the trivial things that young kids and teens complain about. Our thoughts being: “You know ... we really don’t have it that bad!

My sister Alecia fights a degenerative disease. It claimed most of her sight and most of her hearing at a young age and started to attack her organs and even her teeth. Through the genius of concerned doctors at SickKids Hospital, they learned to stay the progress of her illness through diet alone. We are thankful we live in Canada, where these resources are available to us to (primarily) help my sister, who is sick, but also for Canada’s medical community to continue world-class research into making lives better. Constant visits to the doctors went unnoticed by us siblings, Alecia was just Alecia, and she always came home with a big smile on her face and unapologetic to continue on living life as if it never occurred that she were that different, being blind and deaf.

This all being said, our acceptance and love for Alecia didn’t mean she lived a normal life like you and I. Having less than 10 per cent vision and hearing growing up made for a very different and modified world for her outside the home. She grew up with modified learning programs to accommodate her level of intake of knowledge due to her condition, and she couldn’t be off the home property without an escort to be her “eyes” and “ears” and she’ll never be able to live fully alone and independently. But to see her walking down the street and meet her, you would never guess! She is so happy and interactive to meet new people and have new experiences.

In a way, our family was lucky to have such a high-functioning, overcome-all-odds-attitude deafblind family member. I know of other deafblind families where their member is not able to be as high functioning as my sister due to their particular illness and struggles that physically limit them. Getting involved with CDBA Ontario was our family’s way of both garnering further support for Alecia (a community of people who are deafblind as well as the auxiliary support CDBA Ontario has to offer) but also for my family to give support back to other families who have a deafblind member.

Through all of this, my sister Alecia continues to be an inspiration today. She never complains, never thinks the world owes her anything and continues to find joy every day in everything. Just yesterday, she learned how to make naan bread after “watching” my father make the Indian flat bread last weekend. Over text, I teased her (she has a GIANT phone with GIANT characters on it) -- “Hey Cow” (my nickname for her -- long story, don’t judge me) -- “I heard you made bread! How you do that if you can’t see the recipe??”  Knowing I’m trying to needle her in an older brother teasing kind of way, she just ignores me and tells me how great it turned out, communicating carefully over text, one character at a time; probably the same way she read the recipe out of the book. She has the patience of Job.

Growing up with Alecia wasn’t a chore in our family, but a blessing. Don’t get me wrong, we had family arguments and sibling fights -- but I wager no more than any other family. What makes Alecia special in this regard is her continuing daily pursuit of happiness, often displaying more enjoyment in the day-to-day things in life than any of us with our full senses. She’s been a constant reminder to me to do the same -- enjoy life and our health and the family we have, to love one another. What a powerful message she’s been teaching me and everyone she meets over the years.  Thank you Alecia!

Sheldon Purkiss
Sheldon Purkiss is a father, artist (graphic and traditional), health and juice nut who loves technology. He is currently running day-to-day operations and support for a Canadian dental software company, LiveDDM. Twitter & Instagram - @ShelAlbert