“When I woke up one morning in late November 2019, I could see clearly from the middle of my right eye up, but from the middle of my right eye down, my vision was extremely blurry. I contacted my eye doctor, but it went away within a week. Then I started to experience some numbness in my toes. By the time I was finally able to meet with a neurologist, the numbness had spread all the way up to underneath my breasts.
On December 31, 2019, I was sitting in a hospital bed with an IV of steroids, and I couldn’t feel my hands and body from my breasts down. A team of neurologists surrounded my bed with their heads heavily hanging. ‘We’re sorry, Ms. John. You have Multiple Sclerosis.’ I sat there, feeling more numb than my body. I could not comprehend what was said to me. ‘I am 28 years old. How do I have Multiple Sclerosis?’ I was just fine a few months prior. I could not fathom that this was my reality—one bad flare took away my sense of security.
Fast forward 3 months later, New York was in a pandemic. I was newly diagnosed and feeling so lost in the world. Uncertainty was my way of life. Then one day, everything hit me like a Mack truck. All the emotions I was suppressing came out. I felt numerous emotions all at once. I cried from all the pain, I screamed from all the rage, and I felt defeated. The only way to explain the emotions was grief. I was mourning my past life and all I could never accomplish. How could life be so cruel? Why me, what did I do to deserve this permanent disease? My life halted right when it was beginning. ‘My life is over and I’m only 28!’
It was odd going through the most challenging moment in my life without my family and friends nearby. We spoke on the phone and video chatted regularly, but it was not the same. I felt like a sideshow attraction. COVID was the glass separating us. My vulnerability on complete display, yet no one could reach me. I could see their sympathy and want to help. They did not know how. ‘At least it’s not a disease others can see.’ We knew nothing about MS. It was awkward interacting with others. No one knew what to say. Everyone was dealing with their own emotions around my diagnosis. ‘Have you tried yoga, being gluten-free, vegan, or some miscellaneous product that will rid me of MS?’ ‘How are you feeling now?’ This is an innocent question but sometimes it’s overwhelming being asked by so many people constantly. I understood it was difficult for others, but that made me feel more alone. I felt the need to comfort others instead of receiving comfort.
The isolation felt even worse, emotionally and physically. It forced me to deal with my diagnosis in real-time. Day in and day out, here I was, left with my emotions. I fell into a deep depression and questioned if life was worth living. What will life be like going forward? The unknown was the scariest part. I could not feel the majority of my body. Would I be able to walk again without assistance? Would I gain feeling back in the body?
How do I raise my son? Is this disease hereditary? He was 2 years old, too young to understand any of this. I could not feel it when he touched me. I couldn’t play with him and changing him was almost impossible. I feared he was cursed with a mother who could not be any use to him. He would grow up learning to take care of me. We’d live reversed roles. I had so many questions and no one had the answer. It was hard for my partner, Nick, to watch. I thank him for understanding and allowing me the time I needed to process what I was feeling.
After my diagnosis, I started Googling to learn more about what MS looks like. I took a look into support groups, trying to find a space I felt comfortable sharing in, and I kept seeing the same recurring theme, where the groups were made up of an older, white crowd. I felt like MS was mainly depicted as if it were strictly a white disease. It’s not: a 2013 study in the journal Neurology found African American females get MS at a higher rate than previously thought, and research also shows our MS may be more aggressive.
Last May, I was venting to Nick, about how I felt like I never saw anyone with MS who looked like me, how I felt like I was out here on an island. He said, ‘Well, why don’t you create something?’ I created Life With Moyna on Instagram and later, my blog at lifewithmoyna.com to add representation to the MS community because it’s a fantastic community, but it needs to be a little more inclusive. My brand is focused on multiple sclerosis advocacy, lifestyle, and motherhood. My content revolves around an MS journey depicted from a young, black, professional mother based in NYC. Also, I provide information on MS friendly products and treatment options. I receive comments and DMs from Black women who feel comforted when they see another Black woman with MS acknowledging that. And once I connect with women, I’ll often really engage in conversations with them about our experiences, and then check in with them every once in a while. I hate having MS, but I’m very grateful for every person I interact with and we get to share our experiences and converse about what we’re dealing with.
Looking back, I do not know how I coped with the world coming to a standstill and MS simultaneously. It would have been easy for my emotions to spiral out of control. I had no control over my life, circumstances, and body. I found some solace knowing I was not alone in this aspect of life. Everyone was dealing with this pandemic and all the feelings that came from it. With all that was going on, I needed to allow myself to feel. I went from moments of being emotionally sound to then breaking down. It took months, but I finally got to a point where I stopped crying. I was able to understand my life was not over. Though life would be challenging going forward, it would not be impossible. I remained steadfast I would be okay. My life was only beginning, and I have so much more to accomplish. Some days I still mourn. But for every bad day, I have several good ones. It’s about finding the silver lining within MS!
My journey has not been linear. I am still struggling with some severe flares. It’s January 4 and I’m in a hospital room for the second year in a row. I started 2020 with this same story, only small tweaks this time. Instead of numbness through my whole lower half, it’s just my left arm. I have tightness and pressure right in the center of my chest, making it very challenging to breathe. I spent 2020 being grateful for walking. I’ll spend 2021 being thankful I can breathe.
I am trying my absolute best to process my emotions. Not letting all the feelings pile up and lead to a breakdown/explosion. Trying to find the silver lining in all my experiences (as cheesy as that sounds). MS is getting harder and harder to find any positivity. When does this get easier? Why does a night of a few shots of sake with my cousin end in a 5-day hospital stay? What should I expect this year? I have so many questions all the time. The uncertainty of MS always keeps me anxious. I know it’s impossible, and life will not return to what it used to be. I need to know it can be livable. I am taking it day by day!”
This story was submitted to Love What Matters by Moyna from Queens, NY. You can follow her journey on Instagram, YouTube, and her website. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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