The other day, I watched a video about the late Claire Wineland. In it, she said many people believe that if someone is sick or disabled, they must be unhappy.
When someone who is sick or disabled receives that type of message over and over, they may start to believe it. Wineland said the narrative needs changing: The sick or disabled can and should live a happy, fulfilling life.
Claire had cystic fibrosis and definitely lived her life to the fullest.
I can’t comprehend the idea that my disability should keep me from living a happy, fulfilling life. I am generally happy with my life even though I have Charcot-Marie-Tooth (CMT) 1A and wear ankle-foot orthotics (AFOs).
I do as much as I can and try my best to explore different hobbies to not let CMT hold me back from fun. For example, I probably can’t go rock climbing, but I can do some easy hikes.
I do not necessarily enjoy some of CMT’s symptoms or wearing my AFOs, but I am not unhappy. I do not always have the energy to stay out as late as my friends, but I still go out and have fun. I may need to leave earlier than I would like to, but I still go.
Having CMT has actually helped me to slow down and enjoy the quiet moments. When I am out and about, I often need to stop and rest. At those times, I can sit and enjoy the world around me. For example, while hiking with my son, I often need to stop and sit down. That is when I notice the sights around me since I am not focusing on where I am walking. When I notice the beauty, I tend to feel more relaxed and content with my life.
My goal is to do as much as I can and do my best to enjoy it all. Having an illness or disability should not stop me from being happy.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.