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Emerging From My Pandemic Chrysalis as Someone With Multiple Sclerosis

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I feel a little bit like a butterfly that’s been in its chrysalis for over a year and is now ready to emerge. I have put my life on hold for over a year now due to the pandemic. This makes no sense since the pandemic really didn’t cause much change in my life due to my usual self-isolation. I guess because I tend to draw inspiration and motivation from people around me and things going on around me, when the rest of the world pressed the pause button, I lost all motivation to participate in life. Now that the rest of the world is starting to get back to some semblance of “normalcy,” so am I.

During the pandemic, I met another woman online and I developed very strong feelings for her. This was also partially what caused my retreat from the world at large. Once it was somewhat safe, we met in person and it was a spectacular disaster. I went further into my “cave” to lick my wounds. I have finally bounced back and am ready to get on with my life.

I made a life-changing decision to move back to my hometown. This decision has me both excited and a little bit nervous at the same time. When I left over five years ago, I was not in a good place. I was still stuck in the denial stage of my MS diagnosis. Yes, I had already been living with it for about 20 years, but was still very much in denial. I was surrounded by people who knew me before I became disabled and I was determined to make sure that my life was absolutely no different than it was before my disability. When I moved away, I was able to reinvent myself. I became a full-time wheelchair user in that time and have been focused on making the necessary adjustments to be able to live my best life while in a wheelchair.

I need to pause here to give a shout-out to my mother. You see, living with a disability in the USA is expensive and my mother has made sure that I have everything I need to make my life as easy as possible, including recently purchasing a wheelchair-accessible vehicle. I no longer have to feel guilty and constantly apologize to other people for having to lift my wheelchair in and out of the car anytime I go anywhere. She also bought me a power wheelchair that allows me to simply drive in and out of the car.

Back to why I am nervous about moving back to my hometown. It is going to require a conscious effort not to slip back into my old behaviors and ways of thinking. I do not want to go back to being in denial and trying to fit into a world that I can no longer fit into. I need to stay in the present and continue to accept my limitations. There is a fine line between accepting your limitations and just simply giving up. I have no intention of giving up. I just need to stay focused on making the necessary adjustments that will allow me to live a satisfying life in a wheelchair with MS.

Since I have become a full-time wheelchair user, I have become acutely aware of how a large part of the world is inaccessible to individuals with disabilities. I am not naive enough to think that there will not always be some things that are going to be inaccessible to the disabled. But one of the things the pandemic has taught us is that with just a little bit of effort, lots of things can be adjusted or adapted to allow disabled people to navigate through the world. They were never given consideration before the pandemic and we’re at risk of losing them again. So I have already started researching disabled advocacy groups in my hometown to contact. I want to do my part to advocate for allowing disabled people to be full participants in this world. Or at least my little corner of this world.

Getty image by MichaelRamsdell1967.

Originally published: June 28, 2021
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