7 years ago I was diagnosed with Myotonic Muscular Dystrophy, a progressive neuro muscular disease that, at this point, is uncurable. I noticed it initially when my hands would get stuck in an open position and I started to lose strength when opening jars, shaking hands, etc. The first year of the diagnosis, I struggled hard. My mind was racing with anxiety and depression and consistently going down a rabbit hole of morbid thoughts. I was engulfed in fear and essentially waiting for the other shoe to drop.
At that point, I had two options - sit around and let the disease define my life or do something about it. My brother in law, wife, and I teamed up with the Muscular Dystrophy Association and their Endurance Team. We began to train and raise money for our quest to run the Chicago Marathon. Since beginning this endeavor we raised a ton of money and completed the Chicago Marathon multiple times and the DC Marine Corp Marathon once.
Mentally and emotionally I knew I had to make some changes to effectively manage this disease and I came up with the below 9 that help me and can also help you
1) Base our beliefs on facts, not assumptions. Saying "I can't do that or I'm not good enough" won't serve you.
2) Focus on what you can do, not what you can't do. Living with a disability limits our physical abilities to an extent, however, there are some gifts and talents we can share with the world.
3) Live in the present. We cant' change the past and can't predict the future. Going down the rabbit hole of what the future holds is not productive
4) Live on the right side of the self-fulfilling prophecy - Whether you think you can or can't you're probably right.
5) Don't let a disability define you - the disability is a part of you and doesn't define you as a human being. You have wonderful talents and gifts, your own identity, and your own values that the world needs.
6) Control the controllables - We can't control what people think of us, whether or not they judge us, treatment timelines, or possible cures. We CAN control our attitude and how we ultimately choose to live our lives.
7) Be the best version of yourself you can be - overcome your challenges, learn from failures, and continue your growth as a human being. Show love, compassion, and gratitude.
8) Live unlimited - If you want to do something, do it. If your disability doesn't allow you to do it in a conventional way, figure out a way to make it happen. Don't let your disability be your excuse
9) Victim of circumstance - when we become the victim of our disability, we give ourselves permission and are looking for someone to save us. When we take ownership of our disability it allows us to become empowered and allows us to make choices and decisions that serve us.