Stephanie Chicas is 32 years old and lives in Alexandria, VA. Stephanie has SELENON congenital muscular dystrophy and uses a ventilator via a tracheostomy. She loves cuddling with her cat, Matcha, while reading a book and enjoying a cup of matcha latte. Stephanie also enjoys going for walks in the park, attending dance class, and practicing her artistic skills.
Stephanie posing in front of a colorful artistic street mural.
Being diagnosed with a rare muscle disease at 13 years old changed my perspective on the world and how I view myself in it. As I came to understand the disabled identity and all that comes with it, I came to understand myself better. Pre diagnosis, I knew I was different and I often felt like I had a different mindset than my peers. Once I was diagnosed with SELENON, I came to learn important aspects of my disabled identity and the world that was not built for us. I came to meet people that are welcoming, caring, and inclusive. And I came to know the importance of accessibility in its many different forms for different disabilities. With the acceptance and understanding of my identity, I redefined how I view myself.
As someone with a chronic illness and disability, I face symptoms every single day. Every day looks different to me, and I adapt to what I am facing with every new day. How I manage my time and energy becomes a crisis aversion plan. I overthink how I do things, when I can do things, or if I can do things. My priorities are kept in check every day.
Balancing needs and values
Having the mindset of keeping my hierarchy of needs met has helped me stay in tune to my values, morals and subsequently, away from drama.
As someone with a rare form of muscular dystrophy, my body reminds me every day how to take care of it. My weakened diaphragm reminds me to take deep breaths, my slow digestive system reminds me to eat well, and my already tired body reminds me to get a good night’s sleep. Having a good support system, access to good doctors, an accessible home, and the correct devices for me are intrinsic for survival. As long as those needs are met then all other areas of my life run smoothly. It becomes easier to handle other areas of my life when the most important areas are taken care of.
Stephanie enjoying a day in the mountainside of Virginia
Sticking to my values has helped me stay away from societal expectations and pressures.
A few principles that have helped me live my best life are staying authentic, leaning into the power of vulnerability, having empathy, and continuously working on my inner peace. Becoming aware of how rare my disease is has helped me understand that I need to prioritize living in alignment with my true self. Society already reminds me how different I am and – yeah, they’re right, but I am my own person. I will continue to advocate for my needs and stay true to myself. While being vulnerable is hard, it has led me to have great connections for continuing to be who I am. It feels great to be myself and to be loved and accepted for who I am. Being authentic helps others be themselves too. I care about being authentic because it helps those around me feel like they can be themselves too. Helping others feels safe and hoping that that feeling continues on through others inspires me to continue being me.
Stephanie at a volunteer event for Make a Wish
And since I do feel different from the norm, I have great empathy and compassion for others. Once you go through your own battles, you are reminded of how no one is exempt from hardship. As Robin Williams said, We all face battles that others might know nothing about, so it’s best to extend compassion for others as you would want extended to you. Having greater empathy offers more understanding and harmony. The more peace and harmony I have in my life and try to achieve every day, the more I feel like I can handle anything thrown at me. Handling things with peace is essential to me. While I do let myself express all of my emotions because I don’t want to bury anything and have it affect me physically, I also try to remain peaceful because doing so positively affects my health. Getting stressed or worked up over various things only makes my symptoms worse. Finding peace and harmony wherever I can, however I can, helps me cope with whatever life throws at me.
I decide what works best for my life and how I want to live it. It is a helpful tool when I think of it – how my body reminds me of what is truly important. My health always comes first and as long as I have the tools and support to take care of that, then I can better manage everything else with a level head.
Gaining confidence and staying true to myself
The confidence that I have gained since being diagnosed has increased exponentially as I find more self-acceptance, self-assurance, and freedom. As a patient who is familiar with advocating for health needs and navigating the health care system, I have grown to be more confident in knowing what is best for me and how to maneuver difficult situations. Women like me, who are living with neuromuscular diseases, become experts in our own care. We are resourceful in coming up with solutions and seeking help from the right people to receive the care we deserve. The self-advocacy that is required to manage our care only makes us that much more powerful. Being confident in my truth and in who I am has grown as I navigate life as a woman with a disability.
Stephanie at MDA’s On the Hill advocacy event in Washington, DC
Staying true to our values and gaining confidence truly aids in how authentic we are in our lives. Owning the disabled identity and getting rid of expectations from a world that wasn’t built for us boosts that authenticity. With the communication required to navigate caregivers, insurance companies, and medical staff, we become really good at expressing our thoughts openly and honestly. Living in a body that has weaknesses and coming to accept it helps us to embrace our different life for what it is. Our lives are not less than or something to be pitied but are just different. Although we may need help with physical tasks, we are very much skilled in other ways that are just as useful.
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