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How I Lost – and Found – Love with MS

Reading time | 6 mins

It was the fall of 2012. I’d been diagnosed with MS about six months earlier. It was a hard six months; I’d spent most of my time in the hospital, relearning how to walk, talk, use my hands and arms, and ultimately, how to navigate my new life. But it felt like I was finally starting to see the light again.

My brothers, dad, and long-time boyfriend had decided to ride the Bike MS: City to Shore that went from Philadelphia to my childhood home town of Ocean City, New Jersey. It was a true expression of love, as they were going to ride over 100 miles to honor my fight with MS.

I remember the week of the ride being such a joyous occasion. And then that Sunday, one of the main men in my life left. My boyfriend, whom I had committed myself to making a life with, someone who I planned to build a future with, up and drove away that weekend — without me.

I couldn’t blame him at the time, and I still don’t today. He fell in love with the career-driven, powerhouse boss babe, independent-is-my-middle-name girl, and I wasn’t that girl anymore. I had retired from my career — I was still a powerhouse, but now I was overcoming hospital stays and health challenges, not taking over boardrooms. I literally had to depend on someone for everything. It felt like MS had poisoned what we once had. He left saying, “No one will love you as much as I do.” I believed him because I knew his love for me ran deep. Apparently not MS-deep, however.

Starting over

How do you come out of that? How do you have the one person that knows everything about you to your core walk away because of what life has brought upon you, and survive?

You find your worth.

I spent a long time finding out who this new me was, and I had to love her because if I couldn’t, then I couldn’t expect anyone else to.

Once I felt confident and settled in my relationship with myself, and knew what I brought to the table, I decided to give dating a try. Dating in today’s world is like an adventure. Although I was living with my parents, they’d moved away from my hometown when I was in college, so I didn’t know anyone there. Meeting someone organically through friends or social events didn’t really seem like an option, so I tried online dating. Cute, right? Ugh. Online dating can be hard enough, but when you have a visible disability, it’s even more intense.

Do I show a picture with the mobility device like my trusty arm crutch or my wheelchair? If so, should I put it last in my pictures? Do I even mention it in my profile? Do I not say anything and surprise them at a first date? Do I tell them after we set up the date?

Sigh.

There’s a lot to consider, and I did it all — mostly as an experiment to see what would be the most engaging. My research was inconclusive but let me just say, there are a lot of rude and weird people out there.

Then there were some good ones, too. I started dating one guy while I was in the wheelchair full-time and undergoing really intense treatments. We even made it through an unplanned surgery. But our lives were too different to grow into anything substantial, and I think personally that’s what made it work for as long as it did. I didn’t have to ask the question: Can you do MS for life? Because I knew there wasn’t a shot at life here, but rather more of a nice rest stop along the journey.

I dated with decisiveness. There were no games; I had no energy for games. I was upfront, I was my whole self, and I didn’t play by the rules. That may have turned off some potentials but it also saved me from kissing a lot of frogs.

Shifting priorities

Eventually I got to the point where I decided I needed to calm it down. I deleted all my dating apps. I stopped looking for love in a man and instead just started living. I decided to date myself. I started travelling, I started recumbent cycling, and I started living a full life just for me.

When I envisioned my future, I saw it with just me. Not because I thought I didn’t deserve a relationship, but more because I really was bruised from that experience of being told “I love you, but not with MS.” I was happily single, but in twisted sort of way.

This was my mistake and something that I hope others can relate to and learn from, because telling yourself you are not worthy of love with MS is such nonsense.

Say it with me: I am worthy of love NO MATTER WHAT!

No matter what chronic disease, no matter what scars, no matter what disability. Sure, the dating world may be a little bit more difficult to maneuver. But we are worthy of love and affection. Period, end of sentence.

I worked through this myself. I started to see that MS didn’t matter when it came to loving me; what mattered was who I was as a person, how much I loved, and what kind of partner I was. MS was just a thing about me — it wasn’t me.

A new “happily ever after”

One summer, I was a bridesmaid in one of my childhood friend’s wedding. That’s where I met him: He was the best man. We’d initially met the summer before, but that night of the wedding it was like something out of a fairy tale (if you believe in those). We exchanged numbers, I drove back to Pittsburgh, and the rest, as they say, is history. We have been together ever since.

This man only knows the MS me, and he loves it. And I mean in the truest sense of the word. He supports, engages, and honestly, if I can gloat a bit, is almost in awe of the MS me. He sees my power, he sees my strength, and he sees my gifts. He supports me, both in my health endeavors and basic life endeavors, and yet doesn’t treat me like a patient. He just treats me like me.

Once, I asked him if he was OK with a lifetime of MS. His response was simple: “If it’s with you, why wouldn’t I be?” MS was always part of this package, and he signed up for all of it.

Dating someone with a chronic disease like MS isn’t always a breeze; it’s unique. We both know that I’m going to need more special assistance. We both know that I’m going to require more adaptations and flexibility. And at the same time, we both know that I can provide him with the emotional support and strength he may require. We both know that I can make him laugh. We both know that no matter what the day brings, good or bad, our favorite thing to do is just to be together.

In October of this year, my love asked me to be his forever coffee date. We are planning our next chapter of our love story now, a wedding in 2019, and it’s all beautiful. All the past relationships: the good, the bad, the ugly, the really ugly... they all led me to this. They all led me to him. And it is good.

UK/MED/18/0343 December 2018