In celebration and recognition of Black History Month, we will be featuring stories from the Black MS community throughout the month of February. All people living with multiple sclerosis deserve to see themselves represented in the stories we tell. We know that it is much more than just one month, week, or day and are committed to representing and amplifying voices from diverse perspectives all year round.
Ainara’s Story—MS Read-a-Thon Junior Ambassador
“I personally don’t know anyone who has MS, but through MS Read-a-Thon, I’ve learned more about it and have heard incredible stories of people affected by the disease. It’s really inspired me. I love reading, so being able to do something I love while also doing my part to help people across the country and in my community, is such an incredible opportunity. I’m so grateful that I can help raise money for those affected by MS. It’s easy, fun, and we can make a difference.
My dad read books to me all the time before I was able to read myself. One of my first big books was The BFG by Roald Dahl when I was 6 or 7. My dad and I did a buddy read, so he would read a chapter and then I would read one. The BFG is still one of my all-time favourite books.
On my Instagram account, @ainarasbookshelf, I review books, interview authors, and share children’s book read-alouds. I do all of this to help other kids build a love for books and to normalize diversity and representation.
I think it’s important to represent authors of colour, because it allows us to get authentic and diverse stories. Own-voice books are SO important and allow authors from underrepresented cultures and minorities to share their stories truthfully and without stereotypes. It is also inspiring and empowering for readers from these cultures to see someone that looks like them writing their favourite stories.
A book that really resonates with me is Your Name Is A Song by Jamiliah Thompkins-Bigelow. It’s a children’s book that talks about the beauty of unique names and features a little girl that goes to school and no one can say her name properly. That’s something I can relate to. At school, I often have to repeat my name or correct teachers and classmates. When I was younger, there were times when I didn’t even want to correct them anymore. The book is a wonderful reminder that all names are beautiful, and I’m happy that other kids who are experiencing the difficulty I have gone through can read it and benefit from its message.
Since I started Ainara’s Bookshelf, every Black History Month has become even more educational for me. In school, we usually only learn about Rosa Parks and Martin Luther King Jr. I love hearing their stories, but I know there are so many Black Canadian heroes in history that we don’t learn about, like Viola Desmond, Lincoln Alexander, and Willie O’Ree. Through different Black History Month programs I’ve been part of and the people I’ve met, I have learned so much. Not only about Black History, but about the people who are impacting Black futures. February might be titled Black History Month, but we should continue to learn about Black history 365 days a year.
I hope that in the near future, a kid from any culture, with any skin tone, can walk into their school or public library and easily find books with characters that represent them and don’t feature hurtful stereotypes. That is my goal, and I want Ainara’s Bookshelf to be able to help make it a reality.”
Moyna’s Story – Living with MS
“I woke up one Sunday morning to find that I was experiencing blurred vision, accompanied by sharp pain. Within a week, my vision returned, but the pain remained. I explained my symptoms to the doctor, and he insisted I schedule an appointment with a neurologist. He said that I was experiencing optic neuritis; I was unaware that it was a polite way of saying I could have multiple sclerosis.
By the time I was able to schedule an appointment with a neurologist, I was numb from underneath my breasts to my toes and had difficulty walking. Given my symptoms, the neurologist believed it could be multiple sclerosis. I knew nothing about the disease before this. I had only seen worst-case scenarios, so I feared that this meant I would never walk again.
I was formally diagnosed with MS after three MRIs and hospitalization on December 31st, 2019. I struggled to understand what this new term meant to me and how it would affect my life. Before this significant flare, I hadn’t experienced any severe issues. My sense of normalcy was gone.
My largest obstacle living with MS is trying to maintain normalcy. I’m a wife and a mother and I struggle with trying to maintain those roles while focusing on my health. Some days, I feel like a burden and worry my illness may become too large of an obstacle for my family and friends. I don’t want my son and husband to have to become my caretakers. I should be the one taking care of my son, not the other way around.
On average, I experience many assumptions from the outside world due to my MS. Since I am a plus-size Black woman, some doctors often assume that I have other illnesses. I’m always questioned about having diabetes, high blood pressure, and/or high cholesterol. I do not have any other illnesses and it is annoying to constantly be asked and sometimes not believed.
I recall venting to my partner, Nick, about how I felt like I never saw anyone with MS who looked like me. That’s when he suggested that I create a space for people who feel the same way. I opened a new handle on Instagram called @lifewithmoyna and set up a blog at lifewithmoyna.com to help add representation and a diverse perspective to the community.
People resonate with seeing other people who look like them. You feel seen and understood when you aren’t the only Black person in a situation. Often times, white MS folk don’t realize they control the narrative around MS and other chronic illnesses because they are the seen faces of it. MS can be an isolating illness, even more so when you think you’re the only person of colour that lives with it. People naturally gravitate towards what they can relate to. If you see someone living with MS who looks like you, it might make it easier to cope. You might talk more openly knowing that person or group will better understand you.
Through @lifewithmoyna, I hope that I can help other Black, Indigenous, and people of colour (BIPOC) find a space where they feel comfortable. I want to help other Black women who may be where I was when first diagnosed. It’s already hard enough living with an unpredictable disease, so finding a safe place where you feel seen is a refreshing change.
Black History Month is a time to reflect on our history and on the advancements that Black people have provided for the world. It is a reminder that we matter, our history matters, our health matters, and above all, our lives matter! I am often asked about advice I have for other Black women living with MS. I advise you to stand in your truth and share your story. It matters, and it is worthy of being shared.”
Dr. Fakolade’s Story – Making a Difference in MS Research
February 11th is International Day of Women and Girls in Science—a day to celebrate the achievements and contributions of females in the field, and recognize the need for gender equality in science, technology, engineering, and mathematics (STEM).
We sat down with Dr. Afolasade Fakolade, Assistant Professor of Rehabilitation at Queen’s University, to talk about her journey in the field and her interest in MS research.
From a young age, Dr. Fakolade knew that she wanted to be a scientist or an engineer, as she loved building and fixing things. After witnessing the role physiotherapy played in her father’s recovery from surgery, she was inspired to study physiotherapy. After a few years of clinical practice, she proceeded to obtain her Master’s degree in Neurorehabilitation at Cardiff University, Wales. As part of her Master’s training, she was involved in a research study examining the effects of physical activity and neurofeedback on persons with neurodegenerative conditions.
“That was the genesis of my interest in multiple sclerosis and neurodegenerative conditions in general,” explained Dr. Fakolade. After relocating to Canada from the UK, she began to explore physical activity promotion for persons living with advanced MS and their family caregivers during her doctoral work at Queen’s University.
“My general research interests focus on supporting full participation in health promoting behaviours, particularly physical activity, among persons with advanced neurological disabilities, their family, and caregivers. The overarching goal is to develop strategies that help minimize the disease impact and maximize health and wellness, both for those living with MS and their caregivers.
I think that there should be policies in place to enhance the funding of research from diverse researchers. There needs to be a stronger commitment to making that happen. Also, it’s important to show representation in the MS community and in the research we do, because we now know that MS affects people from many racial and ethnic backgrounds. It all boils down to making sure that our research can be applied to these populations—making sure that they’re represented in every aspect of the research from knowledge generation, all the way to application of findings.
For young girls and women who are considering a career in science, this type of field requires that you have tenacity, passion, and resilience. You have to build a strong community of mentors and collaborators to thrive and be supported in your scholarship. My mentors, many of whom are women, have inspired, empowered, and challenged me along the way, and that has pushed me to do better. They have also opened doors for me in terms of advocating and connecting me with others in the field.
I have a unique opportunity, being a Black woman in this field, to be a good example to other young Black female scholars coming after me, and that motivates me and pushes me to work harder and smarter.
It’s been an incredible journey, listening and learning from the amazing people living with MS and their families that I have met in the course of my research. The research and evidence generated from our studies can really make a difference in their lives. I think that’s the most important piece of it.”
Janelle’s Story – Living with MS
“When I went to my doctor with my initial MS symptoms, he gave me the impression that he thought they were all in my head. The extreme tingly sensation I was experiencing, my inability to run, and the feeling as if I were unable to move were overlooked until he saw my first MRI.
To certain doctors, if you’re Black and a first generation Canadian, MS gets defined as a disease that you couldn’t possibly have. They believe that my parents, who are from the Barbados, had enough vitamin D, which means that I should have too. The reality is, my mom moved to Canada when she was 10 and we didn’t go back to Barbados as much as I would have liked.
As a person of colour, I have an enormous amount of respect for my ancestors, including the struggles they faced and the barriers they had to break through. My great-grandmother knew how to read, and my great-grandfather used to work in the sugar cane fields. They were advocates for their children and grandchildren. I’m determined to create a legacy for my two children, and I want to show them that despite hardships, like I sometimes experience while living with MS, they can do anything they put their mind to.
That is one of the reasons why I think it’s so important to show that this disease can affect anyone, regardless of their sex or skin colour!
One of the largest obstacles of living with MS as a Black woman is having to explain to your doctors that you want to advocate for your own health. Sometimes the road that they want you to go on isn’t for you. I want to live for myself, as well as my children, without having someone dictate for me.
After living with MS for several years, I finally feel like I have more of a voice when it comes to making decisions about my health. I now ask my doctors to explain why they want me to take a particular medication, and why we can’t try something more holistic. I want to be involved in every decision that is made about my body.
If you don’t feel like you have a loud voice when making decisions about your health, find a person who you trust who will advocate for you. Fight for the lifestyle that you want because you are not MS, MS is something that you have.”
Thank you for sharing your story Janelle!
You have a beautiful smile jenella