Story by Jasmin Floyd
My name is Jasmin and I’m 26 years old. I was born with a rare disease, Fibrodysplasia Ossificans Progressiva (FOP), that causes bone to gradually form over my muscles and soft tissue. I have very limited mobility, scoliosis, and a restricted lung capacity due to the extra bone that’s surrounding my rib cage. I have very shallow breathing, so a respiratory illness like the novel (new) coronavirus, Covid-19, could put my life at risk.
I want to emphasize the importance of social distancing during the pandemic, especially this month. You may not be worried about your own ability to fight off the virus, but please think about everyone in your life and those around you who are more medically complex (or have people in their households who are). Even if you feel healthy and don’t have symptoms right away (or ever), you could still unknowingly pass on the virus to someone whose body isn’t as strong.
Long story short: this coronavirus could easily send me and my friends with chronic illnesses to the emergency room, which is already an extremely stressful environment for us. Our bodies aren’t able to fight off infections as easily as yours. Limiting your time around other people and taking extra precautions to not spread germs to the vulnerable are incredible acts of solidarity. It shows that you deeply care about more than just your personal health.
As you’re social distancing, think about people you know who have had to stay home for extended periods of time due to illness, disability, or injury. Think of those who were already isolated away from society, and those who will continue staying inside long after the pandemic ends. How have you viewed their lifestyles? Did you think they were “lucky” that they got to stay in bed while you had to go to school or work? Are you already starting to get bored at home even though it’s barely been one week?
I’d encourage you to reach out to us. We have mastered the art of staying occupied and have learned how to embrace our circumstances — but we also know how scary and surreal life can feel when there’s a drastic, unexpected change.
Use this time wisely. Consider these weeks as a way to experience what it feels like to be primarily housebound (without the added stress, chronic pain, and physical limitations of disability or illness). You may feel inconvenienced, but remember that what you’re going through is only temporary; your normal life will eventually resume. Many others are forced to constantly adjust to a new normal because of their progressive disability, chronic illness, or other health complications.
Let us support one another and spread kindness and love throughout the upcoming weeks and months. There’s no need to hoard items like hand sanitizer and toilet paper, but it *is* vital that we help each other get through this — whether it’s by donating money or food to a relief organization, volunteering your time to help someone in need, or simply social distancing and trying to stay healthy. You may even begin to realize what matters most in life, as you’re being deprived of everything you once knew. Sudden lifestyle changes have a way of making you appreciate all of the little things even more. Stay safe, practice patience, and remain hopeful.
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