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Owen and Mal

Mallory Cyr

I was not the kind of girl who had my wedding all planned out at the age of ten. My Barbies were career driven, and when I was old enough to know what dating was, all it took was one look around my high school for me to know I was just going to focus on getting good grades.

 Owen and Mal out on the town.

I wasn’t anti-social by any means. My family made all possible efforts to make sure I was included growing up, regardless of my health needs. I had tons of friends and I hung out with lots of guy friends in high school and college, but I knew I wasn’t going to settle. My plan was to graduate college, move to a big city, and write my book à la Carrie Bradshaw. But life is what happens when you’re making other plans, right?

It’s important to mention that since I’m on home parenteral nutrition (HPN) and have been my entire life (thirty-three years), I wasn’t interested in, and was pretty set against, dating anyone with a disability. I didn’t need to add anybody’s “stuff” when I had my own to manage.

Enter Owen
Owen and I met in 2011. I was a keynote speaker at a youth transition conference at the University of Las Vegas. Speaking of “managing stuff”…right before the conference, I was in the hospital for a central line infection, and wasn’t sure I would even be able to go. I was terrified to tell the people organizing the conference, because the year before, I was supposed to present when it was in Reno but there was a horrible storm in Washington, D.C., that affected my flight, and I had to present on Skype. All day.

I didn’t want to let them down or have to resort to my virtual self again. I was determined to make it happen. Luckily, all the timing worked out, and I was off to Las Vegas on IV antibiotics. If I have learned anything throughout my life on HPN, it’s that, if at all possible, the show must go on.

I had made a decision before the conference that I was not there to meet a guy. I was there to work, and if it worked out, have some fun on the strip. The first day of the conference, people kept trying to introduce me to Owen. At the time, he was the youth coordinator who worked for the family organization that had put on the conference. I couldn’t understand why everyone kept trying to get us to meet. I clearly was not interested. He lived on a ranch in Nevada, and was a wheelchair user! I learned that he had spina bifida and had been a wheelchair user his whole life.

Throughout the conference, Owen and I did get to spend some time together. I discovered he was not only funny, but he had a gentle, quiet wisdom about him. When it was time for me to go back to my hotel, I jumped out of the van and with a quick goodbye to Owen and a “You have my number! Use it or don’t!” I disappeared into the glittering lobby of Planet Hollywood.

Well he did use it. He texted me that evening. A short, respectful, grammatically correct message: “It was great to meet you. I hope we get to see each other again. You’re amazing.”

Long-distance Dating

The first year of our relationship, we were long distance. Owen lived in Nevada and I lived in Maine. We both lived with our parents. This situation came with both blessings and challenges.

The good part was, all we could do was TALK. And we did. For a whole year. On the phone, on Skype, on Facetime. We talked about everything. I remember we used to Google search “get to know you questions,” or “questions to ask someone you’re dating.” Because of this, we learned a LOT about each other, and it was so refreshing to talk to someone who was willing to have deep conversations about our values, our goals, and what we wanted our lives to look like.

When we decided we wanted to “be official” after spending a few days in Vegas for my birthday, we promised each other we would always communicate honestly, and not waste time with “drama.” Our communication has stayed strong through our entire relationship. The year of being long distance and learning everything about each other proved helpful, for when we moved in together the following year (yes, we went straight from living in each other’s phones, to living together in a 500-square-foot studio apartment), we had already covered the bases and discussed the tough stuff.

The difficult part of being long distance was that we didn’t really get to ease into the whole dating thing. In order to spend time together, we had to travel. With most of the people I have spent time with, I would gradually disclose different aspects of my “health life,” as I felt comfortable, but in this situation our first months together were spent in small hotel rooms in Vegas and the guest room at his parents’ house.

Not only did I have to schedule my HPN to be shipped to wherever we were staying, I had to coordinate with Owen’s family, whom I had just met, to make sure my HPN delivery arrived safely, and that they put everything in the refrigerator once it arrived. Since I did not want to appear high maintenance, I wasn’t sure how this first impression was going to come off. At the time, I needed help setting up my HPN for the night. Whereas most couples get to know one another over movies and pizza nights, Owen and I quickly established trust as he helped me set up my HPN.

Supporting One Another

Once we moved in together, we had lots of conversations about our needs, and how we could support each other in the relationship. As two people with disabilities and complex medical needs, we both would have qualified for additional support services, or people to come into our home to help us with medical or household tasks. Early on, we decided that we didn’t want to pursue these options and that we would support each other in whatever ways necessary. There is absolutely nothing wrong with having additional help, and it works great for some people, but this was what worked for us. Many people are surprised when they hear that we navigated life, work, and my three years of grad school without additional in-home support.

In the seven years we have been together, Owen has become an expert in managing HPN. He handles the weekly delivery that arrives and is on a first-name basis with our Fed Ex delivery person. If my home supply company can’t reach me, they call him without hesitation. We both have our chores, and we work together to cook meals, pay bills, and do everything to keep our lives running smoothly.

Truthfully, I knew Owen and I would get married when, four months after moving in together, I was hospitalized. It took a long time for the doctors to figure out what was wrong, and I was sicker than I had ever been. My parents drove down from Maine to Boston to be with us. As my mom prepared to stay overnight with me, Owen said, “It’s Ok. I’m going to stay with her.” And he did. He slept on the small couch in my hospital room for ten nights. He held my oxygen monitor and pushed my IV pole so I could go to the bathroom. He never left my side. Five years later, after many trials and tribulations, in our first Denver apartment, Owen asked me to be his wife. We get married in mid-October.

Our story isn’t short. It’s not simple, and it’s taken a lot to get to our “happily ever after.” In the beginning I was opposed to being with someone who had their own “stuff.” In the end, though, we each found someone whose “stuff” aligned with our own, and we understood each other on a level that nobody else would.

To learn more about Mallory, follow her blog: www.curbcutsandcocktails.com. Or follow Owen and Mal at their Facebook page: www.facebook.com/OwenandMal.


LifelineLetter, September/October, 2018

 

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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