One of the most famous dialogues that we all know is “To be or not to be…” It is questioning the value of life and is probably the most commonly used quote in the world. I’ve also heard this quote from my Dad more times than I can count. He says that to me when I’m stressing over a math quiz or want to skip my physical therapy session because it’s too painful, especially after my spinal fusion surgery. I used this quote because, like most of us, 2020 was rough and tested my mental strength and my imagination to keep busy and not go crazy while being stuck indoors for the last year.
Recently, I’ve heard my friends and family having discussions about “the cure.” It is the answer to all our problems, giving us our freedom to re-enter the world: the COVID-19 vaccine. Most of the time, I am disappointed at what I hear. Many people focus on the wrong information that goes against the scientific data provided by the CDC, the World Health Organization, and scientists that are working tirelessly to research and find ways to end this pandemic! I sit back and think of how badly I want to be vaccinated.
To vaccinate or not vaccinate? That is the question. As you may know, I have SMA (spinal muscular atrophy – Type II), which has robbed me of my physical ability to move, to scratch my nose, to do anything essentially. If that wasn’t bad enough, SMA has also caused my respiratory system to be weak and I am immunocompromised. This pandemic has affected every single one of us in ways we never imagined. For people like me, there is an extra layer of fear because for people with disabilities, the ability to recover from COVID-19 is significantly decreased.
My team of doctors have spoken to my parents and they have concluded that I am not able to take the vaccine until further data is available to show that it is safe for me. There isn’t enough data for how children with respiratory issues react to the vaccine. Even though I turned 13 this past March, you would think I would be used to facing an incurable disease. I’ll tell you a little secret. The fear of being infected with the Coronavirus has now robbed me of my freedom of going out whenever and wherever I want. I get bad anxiety when I see others without masks on or not socially distancing themselves in public places.
Can you imagine? Me, a 13-year-old not cruising the mall with my friends in my Quantum® Edge® 3 Power Wheelchair at iLevel? I wish I could get vaccinated so I can protect myself during this pandemic and have a fighting chance against COVID-19. Because I am not eligible for the vaccine yet, my family is on hyper alert and have taken quarantine to a whole new level. They have to though, to make sure I’m safe. I love them for that.
If you read any of my previous blogs, you know that I love being out all the time. Although I have only attended school in person for a whopping six months my entire life, I have never wanted to do anything more than to go back to school. Remember when I told you about my anxiety from the thought of catching the coronavirus? Well, come September, guess who has no choice but to go back to school in person? I’ll give you a hint: She’s got a shiny power wheelchair and iLevel!
Now don’t get me wrong. I want nothing more than to go back to school and hang out with my friends but only if I can get vaccinated by September! If you know me, you know I am a fighter and I take on every challenge that comes my way. I hope that while helping my parents research options for me to get vaccinated and talking to my doctors, soon I can safely take the vaccine and get out of the house! I will not let this pandemic rob me of my freedom and my ability to do whatever I want, whenever I want.
So, wish me luck on my journey to find a way to get vaccinated, so I can return to the new norm we are all living today.
About Sakina Shamsi: Sakina lives in New Jersey with her parents and brother. Although she has spinal muscular atrophy type II, Sakina lives a full and independent lifestyle. She is active in the disability community and enjoys horseback riding, baking and crafting. Click here to learn more about Sakina.