By Shambrekiá Wise, as told to Rachel Reiff Ellis
Six days past my 30th birthday, 9 days past the finalization of my divorce, and 10 months after the death of my grandmother, I was diagnosed with multiple sclerosis (MS). It was 2015. I was also a brand-new mom. My daughter wasn’t yet 2.
It was a lot to deal with at once.
My doctor, who’d treated several hundred MS patients, told me that although MS is something you’re born with, it’s often high-stressperiods that can awaken the disease in you.
That chain of events created the perfect fire to ignite my MS symptoms.
First Reactions
I was in the hospital for about 5 days after my diagnosis so they could give me steroids and set me up with a neurologist to make a plan. While I was there, I kept thinking, “God, why is this happening to me? What does this mean for my life?” Even worse, I worried I wouldn’t be the mother my daughter deserved.
Not long after I got home, that feeling of despair turned to anger. In an effort to help, my mom picked up MS magazines and brought them home. It was her way of showing up for me, but I couldn't appreciate it at the time. It just made me angrier because she was reminding me I had a disease I didn't ask for. I typically would throw the magazines in the trash, but when she shared one that showed foods I’d have to give up, I threw it in the fireplace. To say the least, I wasn’t adjusting well.
Then one day, in a hope to find peace, I opened one. I read an article, and something shifted in me. It wasn’t even the subject of the article that did it. It was the fact there’s a group of people out there who care enough to try to hear and see people like me.
So I wrote to them – the MS Foundation – and said, “I'm in the early stages of this journey with MS, and I'm still not OK with how things are for me right now. But I just want to say thank you for allowing me to have a place to come to for resources.”
First Connections
I never expected to hear back from them. But the executive director responded, thanking me, and we started a correspondence. I felt I had a friend from afar. I didn't have to explain how I felt because she understood. I didn’t have to defend the fact I didn’t feel grateful for or loving toward this disease, either. She was never presumptive of how I should feel or act. It was such a relief to be in this space and not be judged or pitied.
Then one day, she wrote and asked if I’d be interested in sitting on the foundation’s advisory panel. The timing was serendipitous. My life was pointing me in this direction through unexpected connections.
Someone I met in physical rehab turned out to be a neighbor, whom I became close with. She lives in a wheelchair. Through our friendship, I began to see ways I could be a support for her. My daughter and I decorated her house for the holidays. Through the generosity of friends and community members, I was able to get her a front-loading washing machine so she could reach into the washer while in her wheelchair.
I began to see a new type of life for myself. Having MS creates an opportunity for me to teach love and empathy and take care of others. And this is a beautiful lesson my daughter gets to see, too.
Turning a Diagnosis Into Direction
Being able to be a voice for others with MS has been beautiful and humbling. I’ve written a book that I hope to get illustrated and published that tells my MS story through the eyes of a child. Because it doesn't matter how old you are, when you have something scary like a medical diagnosis, you feel childlike. You’re uncertain and try to trust those taking care of you. So it was powerful for me to turn that into a story.
Most recently, I was a contributing writer for MS Focus for 2023. I wrote about different aspects you face when living with MS. Everyone’s voice is important because there’s no set blueprint for this disease. It looks different in everyone and for everyone.
If I could go back to my 30-year-old self, I’d say, “It’s going to be OK. MS is not the worst thing that has happened to you, and you’ll learn to walk in tandem happily within this diagnosis. You’ll help people with this even though it doesn’t seem like it now. Even though you’re going to have to go down a rabbit hole of medication to figure out which one works, you’ll get through this.”
Lastly, I’d remind myself it’s OK to feel what I feel. It’s OK to cry. This is a new assignment. A pop quiz. It’s one I will pass because that’s who I am. I don’t fail. I just figure things out differently.
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Photo Credit: Martin Patterson
SOURCE:
Shambrekiá Wise, living with MS since 2015.
