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Afternoons with Annie

By Kristen O'Toole
June 5, 2022

One sunny afternoon I was walking my Yorkie in front of my apartment, and a friendly six-year-old on her scooter joined me. Her shoes lit up as I wheeled in my wheelchair, and she scooted. She introduced herself as Annie*.

By the time we were around the complex, she had regaled me with imaginary episodes of some show on YouTube. Then she stopped, looked at me and said, “You know all of that was made up right?”

Of course, I did. This outgoing, imaginative, intelligent little girl and I became fast friends.

I use a wheelchair, and she said that she had never seen anyone with a broken limb go around the lake! I explained to her that I don’t have a broken limb, I have MS. She went on to say that’s what her mom has, and she uses a scooter.

Annie started visiting me regularly, especially most afternoons after school. I have no kids, so I hope I provide a little respite and a change of pace for her mom, Annie and their house full of siblings.

We play Hide and Go Seek. She plays school. She watches “Peppa Pig” and eats chicken nuggets. But most importantly, we have tea parties.

Instead of “Red Table Talks,” our talks are over tea parties!

child with parents with MS

After “Rosie,” my waitress, pours my tea, she tells me what’s on her mind and what she learns at school.  She told me that she wishes her mom could walk.

I hope she feels safe talking to me about her mom‘s MS. I told her I think her mom really wishes she could walk, too. But she can’t, and she does all kinds of fun stuff as she can with her. The love that her mom has for her and that she has for her mom is way bigger than the wheelchair, I explained.

So, while we have some serious talks, mostly, she is just funny. Laughter really is the best medicine. We have a real balanced relationship. I help her, but she has no idea how much she helps me!

l recently relocated to a new state. I am near family, but I am newly single and left everything I knew for almost 30 years behind.

I was diagnosed with relapsing-remitting MS in 2014, and after a 2 ½-month stay in the hospital, I have used a wheelchair ever since. I previously held a top corporate position and was a business owner. Now, I do a lot of volunteer work for the National MS Society, including serving as a District Activist Leader.

So, while I do as much as I can with my MS, including bowling and recumbent cycling recently, I still have a lot of time for Annie. However, she completely understands if I don’t feel well or am tired.

That’s one of the greatest things about her. She is very caring and empathetic, beneath all her drama and six-year-old bravado. I hope she always keeps that empathy. As those of us with MS know, empathy is in short supply.

So, in addition to her humor and the empathy that she brings to my world, I also really appreciate that she never looks at me with pity, which is the worst for me. The wheelchair is totally normal to her. No judgment. A lot of adults could learn from that.


Editor’s Note: *Names have been changed for privacy. Everyone has their own unique journey with MS, and The National MS Society blog strives to amplify the diverse perspectives of people in the MS movement. While the content of this blog may be sensitive to some, the author is sharing her personal, authentic journey with MS.

For resources for children who have a parent or family member living with MS, learn more about MS Adventure Camp.

 

Kristen O'Toole

Kristen O’Toole is a former public relations executive. She now volunteers for the National MS Society as a Walk MS Team Captain, District Activist Leader and serves on the Government Relations Advisory Council for her state, Florida. In 2019, she was named Southwestern PA’s MS Activist of the Year. She was diagnosed in 2014 and wants to raise awareness and understanding about MS until we find a cure.

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