In honor of the #changetheweddingindustry campaign, I wanted to highlight the story of one of my couples. Below and in their own words is their experience of love and the wedding industry in the context of disability.
Our relationship, marriage, and my MS
Few young couples have any real idea what “in sickness and in health” really means. Jeremy and I learned the hard way what it means to love in sickness. We started dating in February 2010, moved in together a year later, and enjoyed the most brief, beautiful young love honeymoon for a few months. Photos of us at that time show a couple whose love was free and easy, our youthful naiveté making us light enough to fly past daily tribulations, no concerns could keep us grounded. And then that summer I began to fall, I began to forget, I began to lose control of my body; my trembling hands, my uncontrollable bladder, my weakening legs, my faltering balance. By that October, I had been diagnosed with multiple sclerosis and we were on a path that would lead us through reckoning with severe, painful, sudden onset of disability, the loss of friends, the distancing of family, the never-ending fights with insurance, hours upon hours spent not on the dates and adventures of eary-20-something couples but in hospitals and doctor offices, our relationship turning from equal lovers to sick person and caretaker. Our love shifted, matured, became a type of partnership. There is little doubt in my mind that had this not happened, we would have gotten married many years ago, like so many of our friends, but throwing a party for our love seemed like a privilege of youth we no longer had right to.It is said that having a chronic illness is about finding and accepting a new normal. For the next six years or so, nothing felt normal or stable, first we survived (and I use that word with great intention) the trials of a fast and devastating disease onset, then we got through four years of grad school—a challenge for any couple. After completing a post-grad fellowship and being offered a full time position, we felt for the first time in years that we could breathe again and look forward. We also felt more at peace with the new normal, my disability has increased, but now we don’t stand out as much of an oddity as we did a decade ago, for better or worse, with age our friends are now more likely to deal with their own limitations. In the midst of finding this new normal, last fall Jeremy surprised me with a proposal. Being engaged has been rather wonderful, it has rekindled the romantic side of our relationship, letting us celebrate our love anew and look to the future with fresh enthusiasm.Upon our engagement, one thing we both readily agreed about was that we didn’t want the first ten years to disappear. People frequently mark their relationship tenure by their wedding date, but we’ve lived and loved through so much adversity in our first 10 years that it would be unfair to not honor that, besides we know we will need all the tools we’ve gathered to go forward successfully. So, we are making it clear, we are celebrating our 10 year anniversary by getting married.
Our wedding and my MS
There are so many reasons to not have a big wedding—the potential cost alone is staggering. However, for me, one reason I struggle is to see myself as the bride I’d want to be. Flip through the bridal magazines, you’re unlikely to see a bride in a wheelchair or using a cane. Everything showcases the health and able-bodyiness of the blushing young bride. (And don’t get me started with all the jumping, leaping, active bridal party photos—to be able to jump in the air is a privilege indeed.) I choose to use repurposed hiking poles to get around each day, it disguises my disability and keeps me looking like the active, outdoor person I once so embodied. Now I’m left wondering, what type of cane matches a wedding dress? If I so choose, could I even walk down the aisle on my own as the independent woman I want to be seen as? All brides have to worry about how to pee in those ridiculous dresses, but my brain and nervous system doesn’t work right, I have no control over my bowels or bladder, so what is my back-up plan if an accident should happen? A second expensive dress? And where does one carry their catheters in a wedding dress anyway? We are opting for a spring wedding for many reasons, but one of which is I couldn’t imagine how I could wear a cooling vest under my wedding dress to keep my body from going rigid with heat insensitivity.Aside from my laundry list of clothing and logistics battles, one of the hardest parts of planning the wedding is imagining the reception, specifically the dancing. I love to dance! Before I met Jeremy, it was a rare week that I wasn’t salsa dancing, contra dancing, or ballroom dancing. Jeremy doesn’t really know how to dance, but before I got sick we were taking classes and he was an eager student. Now I worry if my legs will even be strong enough to get through our first dance together, let alone dance the night away. I really don’t want my body to force me to sit out that night of all nights.Finally, disability just isn’t considered in weddings. All the venues we toured when we asked about accessibility and accommodations, they gave examples like how they could get grandmas in wheelchairs to places, nothing about how I could safely get down the aisle and to my own reception—even with me standing with a pole right in front of them. Search disability/alter-abled wedding and the results are a) not that many, and b) all about how to plan for disabled guests. Nowhere in our society is it easy to be disabled, but it feels especially taboo in the healthy, active, youth-driven world of the wedding industry.