Let The Names Upon My MS Journey Begin

When I was diagnosed with multiple sclerosis, my world, as I had known it for 37 years, suddenly changed. Now, there was an actual reason for my fatigue, physical weakness, problems with balance, issues with coordination, my hot and cold sensitivity, the numbness partnered with the tingling, and of course, my impaired movement partnered with muscle stiffness. It now had a name.

Finding support along my MS journey

I was living with a debilitating, chronic illness. What changed mentally, emotionally, and physically for me? Immediately, I had to prepare for the impact this disease would have on me as well as my family. It was necessary to begin to acquire and utilize coping skills and tools to deal with adversity like no other I'd ever experienced.

I had to learn how to manage my life with an unpredictable, chronic illness, and actually, that part is ever-evolving. Additionally, there was the introduction to things like assistive devices, maintenance medications, disease-modifying treatments (DMT's). And by and by, I grasped that although you can feel quite lonely at times, I most assuredly was not. Here are some names of others that share my plight.

The more common names...

Several celebrities that I am bonded with through the commonality of MS are former talk show host, Montel Williams who announced his Relapse Remitting MS diagnosis to the world in 1999 when he was 43 years old. He's now an MS Activist active with the MS Foundation.

There's Tamia Hill, R&B singer and wife of NBA star Grant Hill. Diagnosed with MS in 2003, Tamia said the constants in her life: family, faith, and music keep her going from day to day.

Another is Jack Osbourne, son of Ozzy Osbourne, and who was a part of his family's MTV reality show, The Osbournes. He was diagnosed with MS in 2012 and has become an outspoken advocate for MS awareness often sharing his personal experiences with others living with MS.

Have you ever watched the sitcom Married With Children (1987-1997)? Christina Applegate played the role of Kelly Bundy and was diagnosed with MS in 2008. Christina has said that living with the disease has been a “strange journey” and a “tough road,” but that she feels supported by other members of the MS community.

My last celebrity example is Actress, Selma Blair, and she was diagnosed with MS in 2018. Her  documentary, Introducing Selma Blair aired October 21, 2021 on the Discovery Channel. The purpose of the documentary? Per Selma, for audiences to see the full unpredictable scope of what it's like to live with MS.

Building a supportive network

After my first DMT was ineffective, my doctor wanted me to try Tysabri, a monthly infusion administered in the office with a small group of MS patients. Those infusion days came to produce quite a supportive network. It was well needed, fun and emotionally fulfilling.

Amongst said group were: Sweet and caring Tranise who's a wonderful conversationalist. She is a pleasure to know and even came to my housewarming. Darlene was witty and pleasant and shared her kindhearted mother with us who unselfishly treated us to her delicious baked treats sometimes.

Mrs. Sylvia, a quiet and always good-natured woman, was actually from my childhood neighborhood though I hadn't seen her in years. Her children and my siblings and I grew up together and her helpful daughter would lovingly bring her in each time. It was wonderful to be reconnected.

Ms. Yvette was also an intricate part of our group. We missed her humorous stories and banter when her beloved daughter moved her to Florida with the hopes that the milder climate would be advantageous for her. Lastly, Mrs. Colette was with us and I enjoyed her trusty tablet where she'd look up recipes and things. We shared a love of books, beautiful flowers, and scenery. She even visited me once and brought us various tea flavors to enjoy after I wrote my article, Spilling The Tea.

The power of community

And then there's my online community, Multiplesclerosis.net. Here is where many take the time to read, engage and share with others affected by MS. Several names here, for me, are Kim Dolce whose articles are always so very transparent, Devin Garlit whose articles are so spot on, I could've written them myself, Potter who renders such complimentary feedback and lastly, Therry Nielson whose signature 'sign off' when moderating is 'In solidarity', which means united under something specific and is so incredibly accurate.

We are bonded, tied together, supporting one another over one commonality: Multiple sclerosis. We, all these names and others under this diagnosis, may experience the disease differently, but we are in this together and not alone.