While having multiple sclerosis (MS) frames most everything in life for people with MS and their families, many find ways to adjust despite the limitations they may experience personally. Just ask Sarah Cantu and her family, for example. When her 8-year-old son learned his school was holding a mother and son sports night earlier this year, he understood his mother couldn’t do an obstacle course and other activities because she wouldn’t be able to run as she liked to do. So instead, he invited his mother out for a movie night.
On World MS Day (May 31), as we celebrate the strength of those facing the disease, Cantu wants to help others understand what life with MS means to her and how she continues to live the life she loves.
How did you learn that you had MS?
I woke up one morning in December 2012, and the right side of my face was numb. I thought I had just popped a disc the day before. But the next day, the entire left side of my body was numb. I thought I’d had a weird stroke.
I met with a neurologist and got an MRI. My doctor said I had an abnormality in my brain, either a tumor or MS. She planned a spinal tap the next week.
By Monday morning, I couldn’t walk or swallow. My head was foggy. I went to the emergency room where the doctor did a spinal tap and diagnosed me with MS. Fortunately, I have regained most of what I lost with that first flare four and a half years ago. I was 31 at the time with two young kids.
The theme for World MS Day 2017 is ‘Life with MS.’ What does living with MS mean for you?
Living with MS is part of who you are but not all of you. MS doesn’t stop me from living. I’m a mom. I have a life. It just shifted a bit.
There are more good days than bad. Sometimes people assume the worst is going to happen. I had two and a half years between relapses, and I may have two and a half more before the next. Sometimes people are afraid to ask if it’s a good or bad day; assume good unless I say otherwise.
I don’t know any other disease that affects people so individually. Heat triggers my disease, but some people with MS live in Arizona with no heat problems at all.
Living with MS is part of who you are but not all of who you are. MS doesn’t stop me from living.
How has MS affected your ability to work or remain employed?
After I had recovered from my first relapse, we got into a groove. I went back to school and got my master’s degree last December. I was working part-time while in school, and I’m currently looking for a job.
Mentally, I had to get over the block of not being able to do things because of the disease. Once I did that, I got my master’s within a year.
Anxiety, stress and depression can all play a role in the lives of people with MS. How have you dealt with these feelings?
I think everyone with MS goes through them. We’re active in our church and have strong faith, which helps with the bigger picture.
For me, writing is a big stress relief—getting something on paper so it no longer has to swim in my head.
We live close to the ocean, and I visit often because it’s impossible to be stressed at the beach. My neurologist also encouraged me to get a few hours of “alone time” each week.
What has helped you cope with the physical limitations of MS?
I’ve had to slow down and plan more. I have to prepare for things differently, like my daughter’s upcoming all-day lacrosse tournament. It will be 85 degrees outside; so looking through my MS lens, I’ll need cooling equipment and a plan for taking breaks.
To combat my fatigue, I make lots of crock-pot meals, so I can make dinner in the morning when I have energy.
SARAH CANTU (RIGHT) COPES WITH THE EMOTIONAL AND PHYSICAL STRESS OF LIVING WITH MULTIPLE SCLEROSIS BY BEING PART OF HER CHURCH COMMUNITY, WRITING AND TAKING WALKS ON THE BEACH.
What would freedom from MS mean for you in real, everyday terms?
I could run again! I used to work out two hours a day. Now, I’m limited to walking. I’m not allowed to run because of an imbalance in my legs. I’d like to be able to play kickball with the kids, run the bases and play lacrosse.
Freedom from MS would release me from worrying that I was having a flare-up if I experienced a new symptom.
What are your thoughts on the progress that’s being made in the understanding of the disease and its treatment?
When I was diagnosed, my neurologist told me this wasn’t a death sentence; it’s a chronic illness. Those who are newly diagnosed don’t always know the progress of the last 15 years. When I was diagnosed, there were 11 medications. Now, there are 17. If one stops working, I know there are others. It’s amazing.
I’m hopeful a cure will happen in my lifetime so that I won’t have to worry about whether my kids end up with MS. I hope that someday, you can take a pill and be done.
To learn more about how a better understanding of the most common type of MS, relapsing-remitting, could lead to new treatments, read “Big Questions Continue to Drive Multiple Sclerosis Research.”