Are you there, MS?

Guest post from Chantal Milne, MS Walk ambassador

 I was scared when I first met you. I mean, making me numb from the waist down? You really know how to sweep a girl off her feet!

I remember it so clearly – I was a newlywed, ringing in the new year. When I woke up that first day of 2012, I couldn’t feel my legs. I thought I must have pinched a nerve dancing too hard. But when it didn’t fade – for hours, then days – I went to see my doctor.

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She sent me to a neurologist. I sat in the silence of the waiting room, where I fixated on all the things that could be wrong with me. It was one of the scariest moments in my life. “It could be a brain tumour,” the neurologist said – but they’d have to run more tests. I came home shaking, but I kept my fear inside. It would be another six months before I would hear the words, “You have multiple sclerosis.” I had just married the love of my life. I was 22.

“Well, can I still have children?” I asked.

Children. That was something I had always wanted. And from the moment of my diagnosis, whenever children came up in conversation, I’d hear the same doubtful questions from my loved ones: “Are you sure you really want to do this? Have you really thought this through?”

I’ve dreamed of being the mom who plays with her children on the floor. But would I be a burden instead? I never want this disease to touch them – even though it would have to be a part of their lives because it’s a part of mine.

I hate how you made me scared for the future, how you tainted the thought of having children for me. Instead of being excited for them, you have made me worried I won’t be able to run around and play with them. I don’t hate many things, but I do hate the fact you have burdened the people in my life, people I care about.

Two months passed. Scott, who travels for work every other month, wanted to make sure I wouldn’t feel alone around the house. We went to the local animal shelter and adopted a cat named Star. Star proved to be amazing company, but as the months went by, I needed someone who could truly understand what I was going through.

 

I searched the internet from my couch one night and found my way to the sign up page for MS Walk. As I sat there in the glow of my laptop, I filled out all my information – and then I kept typing. Soon I had written a letter to my MS. When I showed it to Scott, he encouraged me to post it on Facebook. I included a link to my MS Walk page.

I keep you deep inside me wherever I go, no matter what I am doing. I know you are always lingering, waiting for that moment when I am at my weakest. Most of the time, you are just a whisper as I continue on my mission for a fulfilling, happy life. Despite your biggest efforts, I am the happiest I have ever been.

We live in a rural area, in Western Shore, Nova Scotia, about an hour from Halifax and the closest MS Society office. Medical appointments aren’t close. Specialists aren’t close. But we have an MS support group about 15 minutes from where I live. Every spring, small communities like mine come out in droves to support MS Walk.  My mom, who is passionate about everything she puts her heart into, read my letter, and we spent months fundraising together with our friends on team Smilin’ for Myelin.

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When I got to the starting line that balmy spring day in 2013, we had raised $6,000. I saw so many families with young kids and newborns. It was like a thousand people telling me all at once it was okay, I could have a family, too. I felt so at home.  The MS Walk made me at once proud to be part of a country that has the diversity, privileges, opportunities and freedoms that we do, and part of a small community where thousands of people can come together to support each other on such a personal level.

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In the weeks and months following the Walk, I was overwhelmed at the response to my letter to my MS. I received calls from the Atlantic Division office of the MS Society, and notes from people all over Canada. I used to be such a private person – sharing major news of any kind was hard, and I never wanted people to pity me. I think it’s hard for people to understand the struggle and stigma that can come with facing medical difficulties at such a young age.

You have made me hurt, numb, embarrassed, confused, sad, angry, bitter, lonely, pitiful. But most of all, you have made me strong. You are one of the most important teachers in my life. I have found resilience deep down inside of me that YOU have brought out. I hold my head up high with confidence, knowing that like most people, I am surviving you.

We are in a better age now than ever before, largely because of how easily we can connect with other people, across Canada and around the world. Connecting with others is a form of self-care, and that can be just as important as medical care. Asking for help when you need it or taking a bit of extra time for yourself is key to staying healthy.

I always keep those whom you have deeply hurt in the back of my mind, and close to my heart. They are always in my thoughts, and they are my inspiration. You have made me stumble, but you will never make me fall.

My daughter, Sadie, is just over a year old now. She amazes me every day. She’s started crawling, and I’m a little worried about how fast she gets into things. Will I be able to keep up? She attends daycare two days a week, which helps me recharge. You just have to adapt.

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I definitely still have fear – MS is so unpredictable. All of a sudden words like “might” and “could” and “possibly” ring in your head – and they are not good words anymore. Anything could happen at any moment. I will be chasing Sadie down the hall, pause, and wonder, how many years will this last? But then I remember that I’ve survived 100 per cent of my bad days so far, so I know our family will get through anything that life, or my MS, throws our way. And when the sceptical voice inside begins to take over, I hold on to the simple moments, the ones I remember and cherish most, and I remind myself – I’ve got this.

 

Chantal is an #MSWalk ambassador. She lives in Nova Scotia with her husband Scott, her daughter Sadie, and her cat, Star. You can read her 2012 letter to MS in its original form, and you can follow her on Twitter and Instagram.

 As we move into #MSWalk season, we will be sharing more of her story, and stories from other #MSWalk ambassadors across Canada. You can be like Chantal and sign up for your local #MSWalk today. Tell us in the comments: who do you walk for?

 

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