Living with cerebral palsy – my story – Cerebral Palsy Association of BC

By Dan Chalcraft

From my perspective, living with a disability isn’t really a negative but something I have to embrace and do the best I can to live a life without limits.

I have always struggled with the fact that I was born with a disability. People with disabilities face many challenges and they have to overcome those obstacles to live their life to the fullest. Cerebral palsy is a life-long condition, not hereditary or contagious, used to describe a group of conditions which affects body movement and muscle coordination. I was born at one pound 12 ounces and experienced a right-sided cerebral hemorrhage which happened three days after birth. It affects the left side of my body and mildly impacts my left arm. It presents certain challenges but there is nothing I can do. I can’t “fix it”. However, I can improve myself physically and make myself better; you have to have a “can do” and positive attitude.

Cerebral palsy affects the brain’s ability to control muscles. To put the condition into perspective, more than 15 million people worldwide have cerebral palsy, 1 in 500 babies are affected, 1 in 3 babies are low weight which is common factor for children with CP and presently there are over 50,000 Canadians living with CP including 10,000 in BC. In my case I walk with a limp on my left side and don’t have full range of motion in my left hand. I have coordination issues with things such as picking up change or writing. It’s more fine motor skills and doing those small tasks that require a lot of dexterity that are a struggle. In 2011 I used my left hand to cut the nails on my right hand. This may not seem like a big deal but until then I had never really tried, but I was able to do it. It’s those small accomplishments that help you develop more confidence and show you what you’re capable of. You can do it – you just need to continue to work at those goals.

Active in sports

I have always been active in sports through baseball, soccer, running and tennis and feel that exercise has been vital to my development and growth. Due to the fact that I was born three months premature I have had to work hard to build up the strength in my lower and upper body due to the under development of my muscles. Cerebral palsy is caused by abnormal development or damage to parts of the brain that control movement, balance and posture and as a result I have extreme stiffness, muscle weakness on one side of the body, and balance issues. In addition there are memory issues due to the hemorrhage, such as carrying out a task like going to get an item from the fridge and then forgetting what it is or forgetting the spelling to a common word like cram.

There will be times when I get irritable and have mood swings, but that’s a result of the frustration of not being able to do something as quickly as I want to, such as finding out directions to a new restaurant and being able to navigate to get there. I haven’t experienced all that I want to in life but have to live my life to the best of my ability and look to be accepted for who I am.

Certainly, I don’t want to be thought of like a second class citizen or patronized since I have a mild form of cerebral palsy. There may be people who won’t want to associate with me because of it, but I try not to take it personally, since it’s just who the person is and could come down to a lack of understanding. When I was 13 years old, I was with my family at the waterfalls at Englishman River on Vancouver Island. I was teased by a group of teenagers while I was swimming in pools of water beside the waterfall. It made me feel upset and feel like I was doing something wrong, but I wasn’t, I was just swimming.

Giving back to the community

I am looking forward to continuing to grow and develop as a person and believe that my time at the Cerebral Palsy Association of BC has helped immensely as it has given me a chance to give back to the community. The work that I do helps provide supports to people with cerebral palsy through giving disability awareness presentations to schools and other community groups like Rotary clubs, and connecting people with programs, resources and other supports in the community. In addition I help with fundraising and promotion of events, and write articles about people living with cerebral palsy and the Association’s involvement in their lives.

From my perspective, living with a disability isn’t really a negative but something I have to embrace and do the best I can to live a life without limits. I can’t change it since it’s a part of me and in the end everyone faces challenges; people just need to find ways to overcome them.

I’m participating in STEPtember – will you?

Staying active is important and that’s why I am participating in STEPtember, a four week team activity that will get me active and improve my health and well-being. At the same time, it’s a fun way to raise money to support people with cerebral palsy and other disabilities.

I will track my steps when I go running with my Fitbit. How will you track your steps and what activities will you participate in?