Nedeen Bazley is on a mission to push herself to the limit while raising awareness and funds about dystonia, a rare disorder with which she was diagnosed in 2014.
“I was diagnosed in December of that year. It took approximately two to three months for a diagnosis to happen,” said Bazley.
“I live with chronic pain every single day. It is very debilitating; there are days where I can do nothing…. I have a little bit of medication to help me but it just takes the edge off. I can’t describe how much pain I am in.”
Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The Dystonia Medical Research Foundation of Canada (DMRFC) estimates that 300,000 people in Canada and the United States have been diagnosed.
Bazley has cervical dystonia, “a focal dystonia characterized by neck muscles contracting involuntarily, causing abnormal movements and awkward posture of the head and neck,” according to the DMRFC.
“When I was first diagnosed my head was turned and stuck to the left for about 10 months. I couldn’t move it at all; I was crawling to and from the bathroom and I was living with my parents,” said Bazley.
“The only activities I did were sleep and eat.”
Bazley has been walking almost every day, taking part in Freedom to Move: Run, Walk and Wheel for Dystonia to raise funds to help find a cure.
She has been chronicling her journey every day online, persevering through migraines, ripped running shoes and other obstacles.
“I’ve walked over 650 km since February, just in training,” said Bazley.
“The hardest day was this last Sunday when I did 24.5 km on the Myra Canyon (in) 40 C heat. I cried at the end of it because I was so proud of myself, but it’s been challenging.
“It’s not easy and I’m looking forward to taking a rest and not walking so much.”
Bazley said cervical dystonia is known to be one of the most painful forms of the disorder.
“There became a point where I was laying on the couch in so much pain and I just said to myself I can either lay on the couch and be in pain or I can go outside and be in pain,” said Bazley.
“With a lot of the therapies and stuff I was doing at the time it facilitated me to be able to start walking and hiking again, and that’s what really changed my perspective on the chronic pain side of things. When I start getting outside and taking pictures of nature, really just being a part of nature, it became my medicine.”
Bazley has now completed her goal of walking 200 km and has beat her fundraising goal, but she is still accepting donations until the end of July.