A Caregiver's Journey with Duchenne Muscular Dystrophy
Speaking on the theme Fear & Failure at Speaker Slam® in Toronto on May 1, 2018, Terrence Ho took the stage with a five minute story.
Transcript
is that the type of man I will become those were the questions I asked myself while growing up I still remember at the age of 10 hearing my parents argue in their room my mom angrily confronting the other woman over the phone and the pain that caused her my father's actions and my mother's reactions impacted me profoundly and ever since that moment I've been afraid of being in relationships with the fear of being like my father in high school My First Girlfriend ended up cheating on me the one thing I'm most afraid of committing and without many masculine Role Models growing up I told myself
I'm gonna do the opposite of what my father did which meant being there for my mother and for a younger brother who lives with duchenne muscular dystrophy I watched my mother commit her life to my brother as his caregiver and she modeled her mom my grandmother who also cared for her two sons my uncles that also lived with duchenne muscular dystrophy until they passed away in their mid-20s from my mother and grandmother I learned about sacrifice so consciously or unconsciously over the years I made little sacrifices of my own knowing that my brother only had so many years to live and with that it led
to failed romantic relationships lost job opportunities and I went when I watched my friends who I grew up with working overseas getting married having children I sometimes ask myself did I make the right decision five years ago I asked my brother what would his dream job be and because he played power wheelchair for most of his life his immediate response to me was I want to be an NHL goaltender just like Martin brodur we both laughed knowing that was physically impossible so I asked him again and he pondered and he said well I wouldn't mind writing about sports and that began our journey together creating
a not-for-profit developing meaningful opportunities for people with disabilities four years ago I took my family on our first trip together in over 15 years I drove 5 000 kilometers in the U.S and we took a cruise in the Caribbean islands and I remember watching my brother even though he was exhausted traveling every day he had a huge smile on his face throughout the entire trip three years ago our not-for-profit gained media access to the Toronto pear Pan Am games where my brother and our team of writers got a chance to interview the athletes that they adored and to think within two years my brother was
able to achieve his dream two years ago my brother started his battle with anxiety and even though our family has had a history with mental health we avoided to confront it directly last year my brother was at the brink of death with Suicidal Thoughts the entire year and with preparations for medical assistance and dying and has his older brother it pained me to watch him suffer and to know that I couldn't do anything to relieve this pain and suffering today thankfully he is a little bit better but never the same so was it worth the sacrifice I made heck yeah am I the man that
had been been so afraid of becoming no it hasn't been an easy Road for me learning whether or not I'm being a good man son and brother and whether in the future I'd be a good boyfriend husband father and grandfather and I wouldn't be the man I am today without Role Models like my mom my grandmother my aunts and uncles who are personal professional caregivers and to watch them give and love unconditionally and they're the ones that inspire me to do the work I do improving the lives of people with disabilities and seniors so let's all take a moment to thank the caregivers in our
lives the ones that have made a difference and acknowledge them for who they are what they do and for caring and loving the people that we do thank you foreign
Transcript generated from the recording and lightly cleaned. Some names and wording may differ from the spoken speech.