There are different ways that I cope with stress while being disabled. I am not going to say it has been easy because it has been far from that. Some days I feel really good and other days I feel like I want to give up. I try my best to stay positive and not let limb-girdle muscular dystrophy (LMGD) control my life.
When I am feeling stressed I tend to vent to my mom about how I feel living with a disability. She may not completely understand how it feels, but as my mom and caregiver, she has been here by my side through it all. She has not only cared for me but also for my sister who passed away in 2018. Jamesha was diagnosed with LGMD and was dependent on a BiPAP machine and a wheelchair.
It was stressful as a child watching my mom take care of the both of us in wheelchairs while my sister. My mother made sure we did not miss doctor appointments, physical therapy sessions, school, and she nursed us back to health when we were sick. A lot of days, I worried about losing her because she is all that we had. I often wonder how she managed to do it all and maintain her physical, mental, and emotional health. But my mother is a God-fearing woman, so she taught us to pray and put our trust in God. Praying helps me when I feel like giving up.
Although it was tough for my mom to be a single mother of 3 daughters, 2 of whom were disabled, I was so grateful to have my sister Jamesha. She helped me cope with stress by us being able to vent to one another, laugh together, and sometimes we even cried together. Since we were living with the same condition, she completely understood what it was like being in a wheelchair. Not only was she my sister but she was my best friend who really helped me during tough times.
When my sister died, I began to battle with anxiety and depression. I have battled with anxiety since I was very young but it was not until she passed that I was treated for it. Her death really took a toll on me and it was a huge loss for my family. Losing my sister while dealing with LGMD and all that comes along with it has been extremely hard. I no longer have the person who could truly relate to me and knows how hard it is living with a disability. A lot of days, I do not want to get out of bed but I know that I must. I still have a family who loves and cares for me, and I know that I still have a life of my own to live.
Also, not having the same strength capacity as an abled body person is very difficult. I need help with things like going to the bathroom, getting in and out of the shower, doing my hair, and cooking. As an adult and a private person, I want to be able to do those things myself. I do not like bothering people or feeling like a burden so I just wish I could do it all myself. Simple tasks make me tired and frustrated. Most people my age can get up and go as they please without needing help with things like getting dressed. Not only has that been stressful but having to fight for my rights in this world and trying to be what society views as “normal” has been especially stressful.
Again, being disabled has its up and downs and it is very stressful at times. But every day I still choose to get out of bed and make the most of it. Listening to music, watching videos, and talking to family and friends are some stress relievers to help uplift my spirits. I also pray and try not to worry so much, and not let LGMD stop me from having fun and living my life. Life is too short and I am in control of my own happiness no matter the circumstances.