Climbing my own MountainS: Lessons learned in living with MS

Where has 21 years gone?!

I was 23, recently moved to Boston with my first job after college when I started feeling pain in my shoulder with tingling and numbness going down my right arm. “I don’t need to see a doctor, this will sort itself out,” I thought. Well, not quite. It was not a pinched nerve as I had originally hoped, but after some tests and an MRI scan the diagnosis was clear… I have Multiple Sclerosis, a chronic, degenerative autoimmune disease affecting the myelin around the nervous system.

I was 23, a time when I thought I had my whole life ahead of me. I was in a relatively new relationship with dreams of a life together and family. I had just started a new job focused on leadership development with hopes of staying in the US — if they sponsor my visa, but still navigating that uncertainty. Now I have an incurable disease with no doctor able to tell me a clear prognosis on my future.

I was 23 when my neurologist told me that she’d never had a patient like me. For an MS patient diagnosed so early medication had a chance to slow down the disease – there is not yet a cure. But nothing was certain. Most women at that time were diagnosed in their 40s, and the advancements in MRI technology and availability, coupled with an approved market of new drugs meant I would have to learn the answers along the way. But there was hope.

So what has this taught me about life?

When I was first diagnosed, I was told by various people and online forums not to tell my employer for fear of discrimination. While I can appreciate that sentiment, I struggled with this immensely. Again, this was my first job out of college. I did not understand the dynamics of work and was told my diagnosis over the phone while at work. I wasn’t in the headspace to finish the day. I had to be open and honest with my boss in explaining why I had to go right then and there.

When I changed employers 10 years later, I was open about my MS from Day 1. I don’t introduce myself with, “Hi, my name is Jo and I have MS.” But if it naturally comes up or when I tell my leadership story (as I often do as the Assistant Dean for the Executive Degree students at MIT Sloan), I always share that I have MS because it has significantly shaped my life and perspective.

Before I share how, let me take a moment to thank everyone I’ve worked with in these last two decades and the organizations I worked for. I feel incredibly fortunate to have worked at Linkage, Inc and the MIT Sloan School of Management and how their cultures have allowed me to share this aspect of my life with support and understanding. I’ve had amazing opportunities! I also cannot leave this topic without thanking my amazing Executive Degree Team (past and current). You allow me to be open when I’m physically struggling, are not afraid to tell me when you think I’m doing too much, and are willing to step in when I can’t. Thank you for walking with me as I navigate this.

So here are some things my MS has taught me: 1.) have empathy; 2.) listen to your body; 3.) be grateful; 4.) it takes a village.

I’ve never wanted anyone to think I need special treatment because I have MS. Why? Because most people have something. Whether trauma, or health issues, or something going on with a loved one, or any life struggle. We have to have empathy. And I am glad to share my “something”, especially if it means you will share yours. And know that I am here to support. Maybe you will meet someone else who has MS and me sharing my story, helps you better relate to them. Because no ones’ MS is the same and there are numerous ways MS can manifest as symptoms - which is why it can be so hard to diagnose. Also, here’s a valuable tip, don’t tell someone who just shared they have MS, “Oh, but you look great!” I know you might mean well, but most MS symptoms are not visible to another person (loss of strength, dexterity, numbness, tingling, foggy brain, loss of vision, to name a few). So how we may look on the outside hardly tells the story. Whether it’s MS or anything.

This brings me to my next lesson, listen to your body. I’ve had to learn when my body is telling me to stop. When my symptoms start flaring, I have to rest. The quicker I listen to my body and do what it needs, the faster I return to feeling better. In full transparency, this is still a work in progress, but it is not unusual to see REST in big letters at the top of my “To-Do” list. I wish we all had to take continuous lessons on how to read our bodies. As my four-year-old yells at me when I tell her she needs to listen to her body and not wait until the last minute to go potty: “My body doesn’t talk!” And while she is right, we need to learn its signals.

What do you do when you face incredible uncertainty? You learn to be grateful. We all lived through the pandemic, it was disruptive, it was frightening, it was exhausting. It reminded me of those first years after my diagnosis. But just as I had back then, I took the same approach to living these last two years and the little things kept me going. I can get out of bed in the morning. I can walk. I can see. I can pick up my daughter. I learned to adapt and be flexible with the situation at hand because things can change at any time. MS taught me that. Because MS didn’t care about a pandemic, it would continue its course and at times actually become fueled by the stress from outside. But I tried to remain present, to stay in the moment, that has become second nature to me.

Finally, it truly takes a village. This lesson is incredibly important to me. It has enabled me to be the kind of mother and professional that I could never have imagined in my wildest dreams. We are stronger when we live life with the people who surround us, sharing the highs and the lows, the victories and the challenges. A year and a half after my diagnosis, my boyfriend and I decided to move in with his parents. It was a decision made partly because we didn’t know how much help I would need, especially if we eventually wanted to try and have a family. Moving in with potential future in-laws just three years into our relationship isn’t how I would have imagined my life to be, but nearly 20 years later we are married with two amazing daughters and I could not imagine a more ideal situation for us. Combined with an incredible group of family and friends, our little village has helped me conquer a lot.

I am incredibly lucky that this disease has not prevented me from pursuing an extremely fulfilling career. I already mentioned the amazingly supportive and collaborative people at MIT Sloan School of Management. In my current job I hope we inspire 250 mid-career students who we graduate each year to use what they’ve learned with the unbelievable network they’ve gained, to improve the world. Because life is precious, and it’s a miracle that we’re here. And if we don’t work to make the world a little bit better than how we found it, what’s the point?

That’s the greatest thing MS has taught me. Don’t wait, because you never know what tomorrow will bring.

There is so much more I could write. I have been so incredibly fortunate with my MS, the disease progression has been incredibly slow and when I experience symptoms they tend to go back into remission. But that is not everyone’s story, and I know even for me things can change at a moment’s notice.

I feel so much love. I have a remarkable and incredible partner, in the truest sense. We live with this disease together, I don’t have MS alone. And my family and friends continue to be there for me, walk with me, climb with me, and help me know my fight for a world free of MS is their fight too.

And now I’m asking if you’ll join our fight.

Just before the world started closing down, the last event I did – work, social, or otherwise – was Boston’s Climb to the Top in March 2020. The 2021 Climb was going to be a very special year with hopes of a big team and a big fundraising goal as it marked my 20-year diagnosis anniversary. BUT the pandemic wouldn’t budge, so THIS YEAR we are making up for it: Our goal is simple, there's 65,878 seats at Gillette Stadium (where the climb is happening this year), so we're looking to get $1 for each one of those seats.... $65,878!!!

Nearly one million people live with multiple sclerosis in the US. Over the past 75 years, the National MS Society has been the driving force for progress and paved the way for nearly all the treatment options available today—but, they’re not finished yet. The Society is determined to be a lifelong partner and resource for every person affected by MS—those diagnosed with the disease and their loved ones. The money I raise through my Climb MS will help fund MS research, programs and services so that people affected by MS can live their best lives as we work toward a cure. I don’t want my kids or anyone else and their family to have to live through this.

Please help me create a world free of MS! Donate. Share. Climb!

Donate here: https://events.nationalmssociety.org/participant/429217

[Cover Photo Credit: www.gillettestadium.com ]