The Journey Begins

Thanks for joining us!

Good company in a journey makes the way seem shorter. — Izaak Walton

It’s funny how the world works. Some call it Karma, some, random acts of coincidence, and others call it divine intervention.
We each have moments when things are not going our way. There are problems and we can’t seem to find answers. We keep getting up, but the world keeps knocking us back down.
A wise person once said, “the world speaks to us in whispers. If we ignore the whispers, it gets louder and eventually shouts.” My name is Colleen. My amazing husband Ben and I missed the whispers. We can no longer ignore the shouts.
Here is our story…

A few years ago, in celebration of our fifth anniversary, Ben and I decided to hike half of the hundred mile wilderness in the beautiful state of Maine. This adventure presented us with physical and mental challenges that forced us to work together and trust each other more than ever before. We experienced moments of triumph and moments of true peace and inner clarity. It was a magical experience that simultaneously left us feeling fulfilled and yet also wanting more.
How fabulous, we thought, would it be to tackle the entire Appalachian Trail? Imagine six months hiking, camping, immersed in nature. It was just talk… a fantasy, a pipe dream, a someday.
Life went on. Work. Family. Weekend hikes. Repeat. But the fantasy lingered in our dreams and our stray thoughts. Always there, but buried beneath the real world. Life was busy and routine. Life was busy and routine until we were hit with the first challenge… maybe the first whisper.
Ben started having episodes of blurred vision. The doctors narrowed it down to two possibilities: Lyme disease from a tick bite or multiple sclerosis- a progressive degenerative disease that attacks the nervous system and affects a person’s mobility and causes diffuse pain.
It was overwhelming and scary waiting for results of multiple blood tests and MRI scans. We told ourselves… we told each other… if the diagnosis came back MS, we would rise above it. We would follow our dream. We would take on the Appalachian trail.
It was MS.
Treatments were discussed. Treatments were started. Some seemed to help. Some seemed to make things worse. Everyone’s journey with this disease is unique. What happens to one person may not happen to the next. A treatment that helps one person may have the opposite effect on another. The diagnosis came and went.
We adjusted to our new reality and carried on. Work. Family. Weekend hikes (fortunately Ben still could). MS treatments. Repeat.
Then life hit us again. No longer a quiet whisper. Anyone who suffers from a chronic physical disease is walking around with a secret. They are not only in physical pain, but there is an emotional component. There is fear of what the future holds. There is loneliness, and there is depression. Medications help, but medication is not completely benign. We noticed that Ben was starting to experience mood swings. My happy, loving husband had a shorter fuse and sometimes lashed out. He “lost it” at work one day. It was a job he was great at. It was a job he enjoyed. But he lost his cool and he lost his job. His neurologist revisited his medications and realized this was a known side effect of one we were using. We were able to adjust his medication, but the damage was done.
The future suddenly seemed more uncertain and scarier than ever. Could Ben work a normal job? Would employers see him as a weakness because of his disease? Would the road only be uphill from here on? Ben felt more depressed and had more questions that we could not find answers to. I couldn’t help my husband. I too felt lost.
Months went by and still no answers.
I needed to think outside the box. The universe must be speaking to me but I wasn’t hearing it. Maybe we were trying to force the wrong plan into place. Maybe we weren’t supposed to plan our new routine. Maybe we were supposed to pause our reality and revisit our dream. I couldn’t get the image of the Appalachian trail out of my mind. Daily, my mind would wander to how amazing it would be for Ben to take that hike. But I kept checking myself, because who drops everything to go wander the woods? It’s not what people do.
I needed a push, dare I say a shout? I decided to be brave and share our struggle and maybe even share my crazy fantasy. I am part of a church group, the Alpha Course. At our recent gathering I opened up to my group. Instead of laughing at my fantasy, instead of offering job leads, instead of asking me why I would consider such a thing, they said, “Just do it.”
Could it be that simple? Could we manage to “just do it?” I thought long and hard about what it would take. I thought of so many obstacles. But, for the first time in months, I also came up with solutions! We do have the means. Right now, Ben still can do it. This would be a big risk. An all-in, cash in all our chips risk, but it felt right.
I told Ben. He told me I was crazy. We couldn’t do it. But there was a glimmer in his eye that had been missing for months. Over the next few days he became more and more excited. My husband was back and he was all in.
Our last hurdle was the neurologist. Would she drag us back down to reality? Would she tell us Ben was too advanced, it was too risky? “Please,” we asked, “don’t sugar coat it.”
“Well,” she said, “it will be physically and mentally taxing. My honest recommendation…
Just do it!”

This is where our next chapter begins. We would like to invite others to take this journey with us. We want you to see that you can have MS and still fulfill your dreams. We will chronicle our adventures, the good times and the struggles on our social media page. We hope to bring more awareness to this “ghost” disease. Feel free to follow us on…mymsvstheat.com

No one really knows what makes the world work the way it does. But there are definitely times we are asked to listen and adjust our lives accordingly. I recommend you listen for the whispers. Don’t worry if you miss some though, there will eventually be a shout. Enjoy the journey, listen to your world, and may your heart and life be filled with blessings.

Donations to the MS Society are greatly appreciated

Every dollar raised directly supports people living with MS in our community, funding important programs and services and fueling research. You are helping to create a bigger impact than you may realize.

http://main.nationalmssociety.org/goto/mymsvstheat

Our personal fundraising efforts to help with any medical expenses during our journey

https://gofundme.com/my-ms-vs-the-at