Changes
I had an idea, and it came true!
Or did it?
After being diagnosed with a rare disorder I desperately needed to have information so I could better understand what I was going to live with for the rest of my life.
The diagnosing genetics said, “there is no organization in Canada.”
I believed there needed to be something available in Canada for people affected with rare disorders. I decided to create an organization.
I had the support from a beautiful woman who was the Executive Director of Parents Place. She believed in me and lent me a copy of their bylaws. From there I applied my knowledge as Customs Broker where I learned to read import and export laws for Canada. I wrote the bylaws, goals, and objectives that birthed the Lethbridge Society for Rare Disorders (LSRD). I also had the support from Dick Varga and his team at the Citizens Resource Centre who reviewed the bylaws and gave me direction on how to start a non-profit organization. I also brought people together to create a board of directors.
LSRD brought people together in support groups and providing information written in understandable language. It was fun creating this organization and then bringing it into a national level. The name changed and it was now called the Canadian Organization for Rare Disorders (CORD).
CORD was growing and many people including the government of Canada were starting to notice this organization. I collaborated with hundreds. Developed an amazing collaboration with the Director General of Health Canada. Where funds were allocated to bring together representatives from rare disorder organization across Canada. Along with this small, medium, and large non-profit organizations from across Canada came together to discuss future opportunities of collaboration amongst these groups.
Overtime, I started to feel incompetent, after all I was hanging around with doctors, specialists, and other professionals with degrees in various disciplines. I also thought and said, ‘I am not capable to doing this, I don’t have the education’.
I looked to others that I believed were interested in helping me grow CORD. To support me in areas where I didn’t know how to proceed. To bring it to a level of awareness such as the cancer and heart organizations. To encourage research and find cures.
An then it happened, I brought someone into CORD. They began speaking to board that I didn’t know what I was doing and was incapable of leading this organization. Her intention was to take CORD away from me and run it for herself. I was so naive!
I was fired, had to hire a lawyer for wrongful dismissal.
At the time I was devastated. I was harshly pushed out of an organization I had founded from my heart and created to help others cope with rare disorders. It felt like it was ripped away from me, and I had no chance for recourse. This was my passion, my purpose for living. To make the lives of others better. Now what?
I felt like a failure, and I didn’t know what I was going to do next. I loved sharing my knowledge, my ideas my aspirations. This energy had nowhere to go, to be used for good or benefit others. I was lost.
Six months later I met a woman who taught me how to connect to my heart, understand and acknowledge my feelings. I realized why I was sick. I had been stuffing my emotions into my body for a lifetime. That what I had been looking for wasn’t through research or medications, it was inside of me!
What a revelation. This is when I began to change me. The perspective of myself and world around me.
Leaving cord, losing cord was the beginning of healing for me.
My journey continues…
Changes
Are a moment in time,
Are seasons in a year,
Are experiences to have,
Are opportunities of growth,
Are the beginning or end,
Are ‘aha’ moments,
Are the ability to create something new.