Guest post by Alli Leithoff, MS Bike ambassador
Growing up, it is normal for every girl to argue with their mom, but not every girl has a mom with Multiple Sclerosis (MS). I was only six years old when my mom was diagnosed with the disease. I don’t remember much about how my mom functioned before MS, but it didn’t make those quarrels any easier knowing in the back of my mind that she was sick.
As I got into my teen years, I remember feeling guilty when I would fight with her. I knew it was normal for a mother and daughter to not always see eye to eye, but I couldn’t escape that guilt. She was already dealing with so many other concerns.
Just over two years ago, I decided to see a therapist. This was not an easy decision for me because I knew I would have to talk about my mom. How could I talk to a total stranger about what my mom went through every day and expect that they would know how to make it better?
The first few months were full of tears and difficult conversations about my mom. I explained to my therapist how I desperately wanted to have that special mother-daughter relationship that I saw so many other people have in their lives. She looked at me and said, “Well, why don’t you?” The answer was simple: because my mom has MS. It was that moment that I began to understand that I was mad at the disease, and it was our relationship that I had been taking it out on.
To help me cope, my therapist asked me to write a letter to MS. I was able to mention my mom, but the letter had to be directed to MS. The letter was incredibly difficult to write, but it pushed me to feel things I wasn’t allowing myself to feel, and as I let those feelings go, it was the starting point to an incredible relationship with my mom. Two and a half years later, I am grateful for the bond we now share.
It’s been difficult to watch my mom’s health decline in these recent years. Luckily, for the first fifteen years or so, my mom was able to manage her Secondary Progressive MS with medications and injections every second day. Unfortunately, over time, it stopped working. My parents then researched and found information on chronic cerebrospinal venous insufficiency (CCSVI) and MS, and so they took a trip to Bulgaria to pursue this treatment. For about a year and a half, she walked better and had more energy. She and my family were beyond delighted and it was amazing to see. That period did come to an end, though. The positive effects began to wear off. My parents tried again, but the second time didn’t work like the first.
In the past eight to 10 months, my mom’s MS has gotten worse than it’s ever been. My mom is incredibly fatigued and can no longer walk or even stand. She’s always been such a positive and independent mom, so this past year has been hard because MS has taken a lot away from her. She has a scooter to use in the house, and my dad got her a little golf cart that she can use to get around outside with.
My dad is by far my mom’s biggest source of love and support. I am constantly inspired by my parents’ relationship. They have been happily married for over 38 years and they are a phenomenal example of what true love looks like. They make the most of their life together and they have done their best to not let MS change things for them.
Not only does my dad help and care for my mom, but she also cares for him and is incredibly supportive of him and his needs. My dad is social and still loves to travel, and she supports him doing whatever will make him happy. She is understanding of his busy lifestyle, but they always enjoy spending time together when they can. They continue to choose each other every single day, and each of them has shared with me that they would rather go through this hurdle together than ever do it a day alone.
Despite my progress, I still have days where I really struggle with my mom’s MS. Those feelings of sadness and anger of what has been taken away from her never completely dissolve, but I’ve been able to find outlets that help me cope. One thing that has really helped me is my involvement with the MS Society of Canada. I started doing the MS Bike tour four years ago, and I got to experience how big and welcoming the MS community is. Everyone has been so kind and supportive, and I immediately felt a sense of family. I often felt alone in dealing with my mom’s diagnosis, but after that first MS Bike event, I realized I had a whole community out there lifting me up when I was down.
Even though the event only lasts two days, the impact lasts a lifetime. When I have sad moments thinking about my mom, I remember that I’m not alone in my thoughts. When I feel the anger towards MS take over, I remember that I can take it out on that 180km Bike route and fundraise for a cure. Being a part of the MS community has given my entire family the strength to believe in a better future for my mom, and for us.
Alli Leithoff is an MS Bike ambassador who resides in Edmonton, Alberta.