If you’re new around here, I am getting personal in this series of emails. I want to share more about how I ended up in this space as an artist, mom, advocate, and community support professional.  You can catch up on them here: one, two, three, four, five, six, and seven.

Who doesn’t love a good love story? The feel good tug at your heart strings tale that gives you hope that love really can bridge gaps that seem insurmountable. This might be one of those, but you’ll have to be the judge of that.

Travis and I met my sophomore year of college, a few months after I transferred. We were on a blind double date, only I wasn’t his date. I was set up with his roommate. The date, in short, was an epic fail but we all remained friends after. You might recall that the timing of my fall from remission means that Travis and I met just before MG came crashing back into my life (like it really ever left at all).

We kept in touch and saw each other in groups, but we were both busy. I moved into the Dexter House off campus and was trying to manage the art and education programs in addition to the Elijah Project. He was on the soccer team, studying kinesiology, and worked at the student fitness center. We lived in very different worlds that serendipitously overlapped due to that blind date.

February of my junior year I was in the midst of my own personal hell. Traveling between school and home for treatments every month, missing a week of school every month, trying to catch up on incomplete courses from the semester before, and withdrawing from the education program. In the middle of all that, Travis signed up to date this hot mess. I remember warning him when we had the “define the relationship” talk that I had absolutely zero interest in dating someone who would later balk at dating a sick person. 

While I had hope that my disease might one day be better managed, I was frank. There’s no cure. There’s no “hope you get well soon”. My message was this: my body and I are at odds, and I do not want to invite anyone into this who is not fully aware or on board for all that it entails. Very romantic. But, he didn’t panic. We started dating. He had a basic understanding of MG from his studies in the kinesiology department. An athlete who also worked in personal training, there was a certain level of both interest and understanding.

When we got more serious and started talking about our future, MG was on the table too. And when he talked to my dad about wanting to get married, he asked about it too. We got married on Friday September 13th, 2013. This was 67 years to the day from the date my grandparents got married who also met on a blind double date.

Photo by Steph Dee Photo

Here’s the truth about dating and marriage with a disability: it is hard, and the stats show that it. Beyond the fact that there’s marriage inequality for people with disabilities (risking the loss of insurance and disability benefits due to spousal income), there’s also the fact that there aren’t very many strong and empowered examples of disabled people in healthy relationships in the media. Unpopular opinion time: ableism is woven into almost every thread of our society today. Dating and marriage included. 

According to Philip Cohen, a sociologist who studies family inequality issues at University of Maryland-College Park, the first-marriage rate in the US (ages 18-49) is just shy of 50 per 1,000. For people with disabilities, it’s half that. 24.
 

I’ve felt a watchful eye on my marriage because of that. Sometimes it’s the comments about what a gem Travis must be to have a sick wife. It’s true. He’s incredible. Our marriage must look quite lopsided to the outside world. He does most of the driving, comes with me to every doctors appointment, knows way more about insurance and pre-authorizations and budgeting for medical expenses than most. But, I know I bring value to our partnership too.

Photos by Brian Kraft and Jessica Charles

The first year of our marriage, I wrote this in my journal just before Christmas (and just before the 12th anniversary of my diagnosis).

There was a time not long ago when I couldn’t imagine inviting someone in to my life to love me and know me, to take my broken body as their companion. I couldn’t imagine sharing the pain of losing remission, of residual symptoms, of days hooked up to intravenous medication, and how awful some side effects can be.  I couldn’t imagine how amazing and wonderful the man would be who would want to take this mess on…. who would dig through the dirt, research medications, motivate me, and do everything he could to make me stronger. I couldn’t imagine how he could feel knowing that things I once loved to do were just out of reach. I couldn’t imagine the patient servants heart that God was preparing me to share my life with.

It’s hard to ask someone to take on the vow of “in sickness and in health” as a tangible right-here-right-now rather than a hypothetical. In some ways, I think that has made our marriage stronger. We celebrated 6 years of marriage this past call. It has not been easy in the least, but there’s nothing else to compare it to—MG has always been a factor in how we relate to each other, set goals, make decisions.