How Growing Up with Disability in the Family Helped Me Accept My Diagnosis
Life is filled with a special package of ups and downs individually tailored for each of us. We are then presented with the opportunity to overcome these obstacles or let them take over every aspect of our lives and eventually limit us. I have never been a fan of the latter. I have my amazing 29-year-old sister born with spastic cerebral palsy to thank for my fighting attitude.
Mart-Marie is four years my senior, but she was my best friend growing up. As I grew up with my sister always needing walking aids and operations to stay mobile, I just found it weird that people found her to be “different.” I did not think we were that different at all. We just moved differently. This is the most important lesson my sister has taught me. Just because you do not consider something normal, that does not mean it is not. Normality is extremely subjective, and my normal has always been different from my peers, whether it be by circumstance or chance.
Growing up with a special needs sister also made me incredibly aware of how hurtful actions based purely on selfish curiosity can be. I think I was an 8-year-old the first time I was in the mall with Mart-Marie and noticed someone stared at her walking aid and how she walked. I looked at my sister, and I could see that these people staring at her upset her. I will never forget the fire that was ignited within me when I saw her face. It was a fire fueled by love for my sister, an instinct to protect her and an urge to ease her suffering.
After that moment, whenever we were in a public place and someone stared at her, laughed at her, or made me feel uncomfortable by paying too much attention to her without a rooted will to help, I would confront these people. I was 8 years old and walking up to geriatrics, toddlers, teenagers, and adults asking them what they were looking at. I think the realization that an 8-year-old girl can call you out made most of them walk away, and I am proud to say that their heads usually hung in shame. I liked being an advocate, and I still do.
Mart-Marie is quite capable of handling these situations without her overprotective younger sister looking out for her. She always carries her battle with so much grace, I have admired her for that before falling ill myself and experiencing firsthand what it feels like walking into a room and being started at for using a walking aid. I was able to walk around with my cane because she was always able to roll out in her wheelchair or walking aid with all the confidence in the world. She thrived on making people who were treating her in a condescending matter because of her disability feel like idiots for doing just that. A famous question people always feel foolishly confident to ask her is, “What is wrong with you?” Her favorite answer? “Nothing, why?”
Being raised in a household where disability was not seen as a weakness, but a strength, is a massive contributor to my ability to adapt to life with illness after my diagnosis. The way we perceive ourselves has a massive impact on how the world will approach you. Myasthenia gravis does not make me weak; it makes my muscles weak. Myasthenia gravis has made me stronger than I ever imagined to be. Almost as strong as Mart-Marie is. Life is beautiful, never stop fighting.
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