What do you know about Multiple Sclerosis? My husband was diagnosed five years ago and we have yet to run into anyone who hasn’t at least heard of it. But for those folks who don’t have first-hand experience with it, we’ve found they don’t really know what MS is. Which is totally understandable, considering that there is no cure and each case can vary widely from the next. March is MS awareness month and I thought I’d share a little bit about what that means to me.

Our particular experience hasn’t been an easy one, but I’m not going to get into too much detail for now. And to be honest, I don’t know what MS is, either. It’s constantly changing for us and has become our roller coaster…a rickety, moving-too-fast-to-be-safe, stomach knot-inducing roller coaster. I don’t know everything about MS, but I do know this: it’s not an easy ride. It’s not what you thought your life would go like. It’s not fun or glamorous. It’s not for the faint of heart. And it’s heartbreaking.

With MS there are many roadblocks, doctor appointments, injections and infusions, MRIs, hospitals, medical bills, pain medicines, and an overwhelming feeling of grief. It’s easy to become isolated from friends and family because you can’t keep up and sometimes they just don’t understand. As your MS progresses, it becomes a major victory to accomplish things that many healthy people would consider mundane. And it can be hard to adjust your vision of this new life and all that will continue to change. Our “new normal” changes every time a new flare-up hits.

As the wife of someone with MS, I experience a lot of these emotions right there with my husband. It was always hard for me to overhear conversations at work about shoes, boats or vacations, when I was struggling to just keep myself together. When all I wanted was to have a normal life, where we didn’t owe $10k in medical bills at any given time, where we weren’t battling insurance coverage gaps and $4000 monthly injections; and where we could go for hikes, or on a vacation of our own, or to not be on medication that takes everything out of him. At first I was being selfish because for a split second, I felt like our family was the only family who had to deal with something like this. It felt so unfair. But overall, it has opened my eyes to the struggles so many people are going through for various reasons, and has inspired me to treat strangers with the assumption that they’re dealing with something just as rough as us (or worse).

My husband just turned 30 and if you see us around town, you’ll probably see him sporting his cane or even maneuvering the grocery store in an electric cart. What did he expect his life to go like? He went to college to be an audio engineer – he’s always loved music and can spout music theory like no one else I know. As a teen, he used to skate and ride BMX. He’s always been an adventurous, easy going dude, and this is definitely not the life he thought he’d be living at 30 years old. Most people who don’t know him see him with his cane and ask what he did – assuming he hurt himself doing something rad and that the cane is only temporary.

I have been photographing him for years and we’ve recently decided to be more intentional with it in light of his continued progression, so that together we can document his journey, spread awareness about MS, and connect with new people to find — and maybe give — a little inspiration and perspective. In January he started a website where he writes about his journey with MS, his daily struggles, and how and where he finds adventure. I often contribute photos to help him tell his story. You can follow along at www.wheelsandred.com.

In spite of the constant physical struggle, he keeps an awesome attitude and we, as a family, try to find any excuse for a little adventure. Because his leg strength, his vision, his ability to feel anything that isn’t pins and needles – well, they might not last long. But our adventure with him will.

No matter what kind it is, long live your adventure.

– m