Guest post by: Carrie MacLean
When I was diagnosed with multiple sclerosis (MS), I thought I only had a few years to live. The more I read and learned about the disease, the more I realized I could live a long life with purpose – just differently than I’d originally thought.
I was a newlywed in 2002, when I woke up one morning with pins and needles in my right hand. I thought I’d slept on it funny. The next day, the entire right side of my body was numb. My doctor sent me to the ER and that’s where I heard the words, “you may have MS.” I knew nothing about MS, at the time, except for the few celebrities I’d heard were living with it. I had known no one personally with the disease.
Shortly after my diagnosis, I became pregnant with my first daughter. I was fine during my pregnancy and maternity leave. It was when I returned to my stressful job that I had my second relapse. This is when I was officially diagnosed with MS.
The doctor wanted me to begin using a disease-modifying therapy, but my husband and I wanted another child, so I decided to hold off. Our second daughter was born shortly after.
Years went by and I was stable. After a routine MRI to see the progression of my MS, the doctors found a pituitary tumour. I had brain surgery shortly after. The tumour was benign, but they were unable to remove it all after a follow-up CT scan. Most people would undergo radiation, but my neurologist was afraid I would experience an intense MS relapse. We monitored this tumour for growth for several years with no changes.
The tumour started to grow in 2016 and I decided to undergo radiation. A few months later, I began experiencing optic neuritis and almost went completely blind. I could only see in black, grey and white. I would see a book, but the pages were completely blank. I could see a utensil but couldn’t tell if it was a fork or a spoon – I could barely see for almost three months! I lost taste on the right side of my tongue and the right side of my body became numb.
I started going to an MS support group once a month when my children started school. That was the best decision I ever made. I talked to others living with MS and we would chat about our experiences living with the disease and other times, just about our everyday lives. In one of these support group meetings, the co-ordinator told me the MS Society was starting a new program called the 1:1 MS Peer Support Program, a program that matches a “peer” – someone affected by MS, with a “volunteer” – someone who can provide a non-judgmental, understanding, and empathetic listening ear. She suggested I volunteer – it was a leadership opportunity I knew I had the skills to accomplish. I only wished that this program existed when I was first diagnosed.
Now, I volunteer for the MS Society’s 1:1 MS Peer Support Program, MS One Call program, run an MS support group and do a visit with a lovely lady living with MS at a long-term care facility.
I would highly recommend volunteering for the 1:1 Peer Support Program. I feel like this is my purpose in life now. I never would have predicted this would be my future, but it’s very rewarding when I feel like I’m making a difference in the lives of my peers. I always let them know they’re not alone.
A few years back, I was matched with a girl that was newly diagnosed with MS. She, like me when first diagnosed, didn’t know anybody with MS she could talk to. We often talk about our symptoms and medications or doctors’ appointments, but we also talk about the work we’re doing outside of living with MS. I truly have a lasting personal connection with her. The 1:1 Peer Support Program match had officially ended after 6 months, but we continue to talk every other week. We’ve been doing this for several years now. I’ve never met her in person, but I feel like I have. I’m thinking when it’s safe to do so, we’ll meet for a dinner or a baseball game one day.
Twenty years ago, I was the team lead on a conversion project of a two billion-dollar accounts receivable portfolio to a new billing system. Now, I get to help people across Canada who are living with this disease none of us wished for or expected. These projects in my life are vastly different, but they’ve been my most rewarding.
Are you at a place in your MS journey where you can provide support to other people affected by the disease? Sometimes the best person to talk to is someone who’s been there.
The MS Society’s 1:1 Peer Support program is searching for volunteers to help guide others living with and affected by MS. If you are interested in volunteering, contact firstname.lastname@example.org or 1-800-268-7582 x3149.