Sarah M Tucker, 36, Multiple Sclerosis
How would you explain Multiple Sclerosis to a child?
M.S. is a medical condition that affects a person’s body in many unexpected and often unusual ways. Each person with M.S. experiences it differently, and how a person is affected by M.S. can change over the course of hours, days and years. M.S. can cause a person to feel pain, numbness, or tingling in parts of their body, weak or tired in their muscles, confused or forgetful in their mind, and it can make it hard for a person’s eyes to see well. No matter how a person is affected by M.S. there are lots of ways that people can live happy and joyful lives. There are doctors, scientists, societies, support groups, and communities that are all working together to help people with M.S.
What would you want the world to know about Multiple Sclerosis?
I would want the world to know that a M.S. diagnosis is not a death sentence. Having M.S. can be a unique opportunity for self-discovery and defining oneself beyond the societal norms. It takes a tremendous amount of courage, community and commitment to show up to the unpredictable experience of living with M.S. every day.
What does it feel like to live with Multiple Sclerosis?
When I was diagnosed with M.S. I felt frightened and powerless. I felt overwhelmed by treatment options and scared about the projected future. I went through about one year of grief and depression, then another few years in denial. I would not say that I was “living with M.S.” I started living with M.S. five years after being diagnosed, when I reached out and made a connection with another person with M.S. Building a small network of peer support has transformed my experience of living with M.S. I feel emotionally strong and hopeful even when my body doesn’t. I am advocating for the M.S. community and contributing to research. Living with M.S. has helped me to listen to my body with compassion and gratitude. I am able to slow down and intentionally choose my priorities to put my recovery first so I can show up whole heartedly.
What brings you joy?
Loving on my two children, with pillow fights, snuggles, walks to the park, and reading books together. I feel joy when I dance or sing, create art, or write thank-you notes. I feel joy in my body when I consciously choose to smile and I see someone else smile back.