Sarah reflects on her MS experience and how she came up with the idea for Climb The Peak, a hike to raise money for MS research.
When Sarah Locke’s not at work in her marketing role at Dell Technologies — a company she’s been at for the past 16 years — she’s probably outside hiking, kayaking, or skiing. Indeed Sarah will be the first to tell you that she’s “more of a country mouse than a city mouse,” which led her to make Henniker, New Hampshire her home.
No one expects an MS diagnosis. But for Sarah, someone who prides herself on being active — she’s completed several Spartan Races across New England, including the Founders Race in Killington Vermont 3 years in a row — it was especially surprising.
Below, Sarah reflects on her experience since her September 2019 diagnosis and how she came up with the idea for Climb The Peak, a hike to raise money for MS research.
Since your diagnosis in September 2019, how have your symptoms evolved? Do you feel better? Worse? The same?
Being diagnosed with MS was the scariest day of my life because of the fear of the unknown. So I dug deep into finding the best neurologist in the region (thank you, Dr. Ann Cabot and Georgia Plamondon!) and learned all I could from resources like the National MS Society. I still have symptoms from my initial diagnosis (a lesion at my T2 that made me completely numb from my chest down with sensation they so nicely call the MS hug squeezing the life out of me). I have a few lesions in my brain as well that make me lose words at times and struggle to focus. I, like most with MS, experience severe fatigue, but on good days I am running on all 8 cylinders. My legs get tired if I do too much — I used to be able to hike endlessly, and now I have about 4 miles in me or less.
On bad days, I get tired and can’t even get out of bed, but I’ve learned to listen to my body. Stress is the number one factor causing my symptoms to show their ugly selves, so I have worked hard to right my mind and body. Eating healthy also takes the stress off my joints and limbs to make my body feel as good as it can. I have a therapist to make sure my mind is clear from work and home life stresses and to learn how to manage and deal with stress in a healthy way…no more bottling it up or saying I’m fine.
In one of your blog articles, you wrote: “I made it my life’s mission to not let this invisible disease hinder my life. To not let it own me. But instead to live beside me and work within its constraints.” How does that come to life for you on a day-to-day basis?
MS is a diagnosis; it is not who I am. MS doesn’t in any way own me — I just have to shift the way I listen to my body and make my daily decisions. I choose to hike some days, and when my body is done, I don’t push on. This is actually really hard for me because in the mountain race circuit it’s called a DNF (did not finish). Before my diagnosis, I never got a DNF, but it’s different now. I’m not in a race; I’m living my life the best way I can with what I have.
I sometimes say that my MS diagnosis didn’t stop me: it created me. It made me stop and look at how I was living my life. It made me change to be the best person I could be. I started a treatment plan to slow the disease, I started eating healthy, I stopped drinking and found sobriety. I am still me but with a different, more settled, more stable mindset. I know my limits, and I listen to my body.
I pride myself on my endurance, dedication, and commitment to be happy, healthy, and live my best life, whatever that may look like.
You talk a lot about how MS is an “invisible” disease because we can’t see the toll it takes on someone from the outside. Tell me more about that.
In the summer, I can’t get cool enough. And in the winter, I can’t get warm enough. I wear clothing made out of cooling material and cold clothes around my neck. In the winter, I wear battery-heated gloves, sweatshirts, and layers of smartwool.
Overall, I have a really hard time regulating my body temperatures, and hot showers are impossible. But if I take anything more than a lukewarm shower, I go into full body shivers. If I get out of a warm bed at night to go to the bathroom and catch a chill, I go into full body shivers. I shake so bad it hurts, and typically end up shivering so I am in a full body sweat and actually have to take muscle relaxers to calm my body.
If I get too hot, it’s like I have a broken circuit. I can’t think; I lose my words and struggle to focus on anything. This happens with stress as well.
What would you say to others who have just received a diagnosis and may be experiencing a range of emotions: confusion, fear, disappointment?
Take a breath. Know that the medicine has come so far that once you find the right one, you might just be okay.
Tell me more about Climb The Peak!
In June 2020, I decided to pull off a bucket list climb to raise awareness for MS. I took my closest tribe that I hike with. We quarantined, then met up in a condo the night before and climbed Mt. Washington, the highest peak in the Northeast. It was a long day, and the whole time I communicated leading up to the event on social media, sharing my story. That morning, I was at $8000. I challenged everyone to get outside that day and ‘walk with me’ and then donate. I was climbing for a cure. That evening when we returned to the condo I had hit $10,000.
I wanted to go bigger but it was hard with COVID. I brainstormed for 3 years, and last year I came up with Climb the Peak for MS at Pats Peak in Henniker New Hampshire. I worked with the mountain, got volunteers, and created a Walk MS: Your Way team page. I promoted it with flyers, raffle items, prizes…the whole thing. This year, we are over $2500 in funds raised with a goal of $20,000.
I don’t see limits. I see solutions that haven’t been found yet. And if I have learned anything, it takes a community. So I am leaning on my community to raise awareness, support, and donate because a cure is on the line.
Local Infusion is proud to support Sarah and Climb the Peak this year!
You can follow Sarah on Facebook and read her blog. You can also register for this year’s Climb The Peak on June 9 here.
Local Infusion Editorial : Aug 20, 2024 9:00:07 AM
