Sometimes You Have to Let Life Happen.

The first day I had to use a cane was the day we met. I had been planning to attend the 2017 Women’s March in Boston with my friend and her roommate. Over the few months leading up to the March my MS symptoms had been getting worse. I used to be able to put in a 10-hour work day and still have energy to drive an hour to the mountain to get in a night of snowboarding, only to do it all again the next day. That was my normal. Active. Energetic. Athletic. Social. Grind sales by day, ride my snowboard by night. If I got a call from a friend to go to an impromptu anything, I was in. Give me 20 minutes and I could be showered, make-up on, ready for what may come. I was not ready for MS. By the time the March was approaching I could barely make it to 10am at work without having to sneak into the game room for a nap. The numbness and pain in my legs had gotten so bad I was dragging my right leg, like the Mummy from a Boris Karloff movie. There was no way I would be able to walk all day at the March without help. The only cane I owned was a plastic novelty cane with the face of the Joker for a handle from a Halloween costume a few years before.

The morning of the March I was in so much pain I took 6 ibuprofen and decided not to go. I was lying in bed with my cats, finger on the send button of the “sorry I can’t make it” text, tears running down my cheeks from disappointment and pain. I erased the message and decided to shower. Just take the day one step at a time. I was shaky and off balance, so I had to shower sitting down. I just let the water run over my face for a few minutes, mixing with my tears, wondering how I was ever going to live like this. How was I going to work, exercise, be social, date? Who would be with someone who couldn’t even shower standing up? I shut off the water and sat in the tub gathering my strength. Even though I didn’t feel like a badass, I put on my ripped black pants and leather jacket. Maybe if I wear this, then people won’t notice a cane? The shakiness and disorientation subsided enough to drive to CVS to buy my first, of many, canes. I was supposed to meet my friend at the Starbucks in Seaport, but when I got to the parking garage I just sat in my car staring at the cane, still in its package. I was about to turn on my car to drive home when a carload of protesters parked next to me. An elderly woman gave me a thumbs up and I knew I couldn’t bail now.

As my friend and I walked across the bridge to meet her roommate I was overcome. There were thousands of people, all gathered for the same purpose. To have their voices heard. To be seen and acknowledged and counted. I decided to put my feelings of embarrassment, shame and pain aside and take in the positivity, empowerment and togetherness of the day. We were walking down the cobblestone streets of Boston when I saw her. She had been waiting for us near a statue, protest sign in hand. We were introduced and I almost forgot about my cane entirely. It was a long, affecting afternoon. We marched through the Common and listened to rallying cries, speeches and stories. She and I didn’t speak very much. We just walked. I had to eventually take the arm of my friend, so I could keep going, even with a cane. My friend’s roommate behind us. I kept looking back to make sure we hadn’t lost her. She was always there. Keeping pace, snaking our way through the crowds.

When the March was dying down my friend took a phone call and her roommate and I finally had a chance to talk. We leaned against a stone wall and she asked me about my work, growing up, my interests, friends, everything but my cane. I just stared at her green eyes glinting in the Winter sun, while she told me about her MBA, her work, where she grew up, her family. The whole time keeping my eyes, talking to me like any other person, like I had nothing to be ashamed of. Her genuineness melting my insecurities with each word.

That was over 2 ½ years ago. We are engaged now. Planning a life. A future. Enjoying our moments in the now. That morning in the shower before the Women’s March I was crying, questioning what kind of life I could have with MS. It isn’t easy. It is a day to day campaign. One step at a time. Sometimes one breath at a time. I realized something that day, though. When I put the focus on life and not on my disease, it allowed life to happen. In the midst of relapse or exacerbation of symptoms or a particularly difficult Tuesday, I try to remember what happened when I took it a step at a time and let myself be me.

My fiancée says that MS is something I have not something I am. On my hardest days I try to remember who I am. Don’t get me wrong, MS is a struggle and it has changed my life completely, but it has also reminded me of who I am and shown me pieces of myself I couldn’t have known without it. The parts of myself that would have remained in the shadows of athletic feats and endless hours at a sales desk. The people I have connected with since my diagnosis. Including my fiancée. Yes, the struggle is real, but so is the gain. When my pain is so bad I can’t walk or my brain fog stops me from talking in coherent sentences, I look at my fiancée and I am reminded of the life I have. The hard, beautiful, complicated, unexpected, wonderful life. One step at a time.

How do you reconcile who you are and what you have? How do you overcome feelings of shame? How has having a disease impacted how you show and receive love? What were the parts of yourself hidden behind health and how have they changed you for the better?