I lost my fiancé, Ashley “Bea” Briggs, due to complications from cystic fibrosis a little over a year ago in early 2017. We met early in the summer of 2015 and fell in love with each other pretty quickly. The next year, we discussed moving in together as the next step in our relationship. It was then that I learned she had cystic fibrosis (CF).

I had suspected she had some health condition long before, as she coughed frequently and had difficulty with physical activities that taxed her breathing, such as hiking. However, I never suspected Ashley had CF because I didn’t know what it was. Even knowing what I know now, I still find it doesn’t get discussed as often as other diseases, despite how terrible it is and the fact that the average life expectancy in the U.S. for someone with CF is currently in the late thirties.

Ashley did not let CF define her or rule her life; she would only tell people she had CF when she felt comfortable. After she told me, I realized how difficult it was for her to open up about it. She knew that I would not care in the sense that it would change any of my feelings for her or our relationship, but she felt that with a big step like moving in together, it was important I know.

From there, the only thing that changed was that I became the partner of someone with CF.

We moved in together in September of 2016, got engaged in November of that year, began looking at forever homes, and even talked about trying to have a baby someday once we were married. During this time from when she told me she had CF to when she eventually passed away, I educated myself about the disease as much as I possibly could. Ashley also began to open up to me about it. She realized that we were a team and I would be by her side for every second of the fight, no matter what.

I admittedly tried to not push her on her health or ask too many questions. This was because of how healthy she always seemed to be, despite living with CF. So, I took my cues on how she was doing from her. If she said she was okay, I accepted that. Back then, I didn’t know enough about CF to handle it any better than I did. I also never presumed that I could know more about her condition than her. I just continued to learn as much as I could, asked questions whenever something came up, and let her talk to me when she felt comfortable.

However, even with the limited knowledge of CF that I had, I could see something wasn’t right in the couple of months before she ended up in the hospital. She was getting more infections, losing weight, and having a harder time doing the things she was accustomed to. During the last month of her life especially, her struggle became a topic of daily conversation. Her breathing became more labored, and I was getting the sense from her that something was wrong. In the moment though, I always thought she was going to be okay and we’d get through it. We’d had some hiccups before, but she always bounced back.

I just don’t think she truly knew how sick she was until the last few days. In late January of 2017, Ashley got really sick and was hospitalized with an infection. We thought we had turned a corner, but unfortunately, the infection wouldn’t let go. After a month-long fight in the ICU, Ashley passed away three weeks shy of her 30th birthday. It felt like we went from lying on the couch watching TV together to her funeral in the blink of an eye. I was devastated, to put it lightly.

That month in the ICU was the most difficult time of my life. The year since she passed wasn’t any easier. To be frank, it’s hard to think about it, as well as how I’ve made it this far. But, like the old saying goes, time does help to heal. Thankfully, my friends and family, including Ashley’s family, have been a great support. I also saw a counselor for the first few months after the loss and joined numerous online groups geared toward CF and spousal loss in general.

I also began to exercise five days a week and hike. It really helped to clear my mind and make me feel like I was accomplishing something. The feeling I got after exercise was incredibly fulfilling. All of this was helpful in dealing with the loss and the grief.

Lastly, I also engaged and volunteered with the Cystic Fibrosis Foundation at its local Massachusetts / Rhode Island chapter. I enjoyed meeting others who had been affected by this disease and were devoting their time to help find a cure.

Getting – and staying – involved in the Cystic Fibrosis community was very important to me after Ashley’s passing. I learned that people with CF have to deal with a lot of challenges on a daily basis. When I thought back, I realized Ashley’s perseverance and zest for life was incredibly inspiring. That sparked something in me that I didn’t know was there: I wanted to do more to help.

This led to me, along with Ashley’s family, starting a nonprofit organization called the Breathe for Bea Foundation in her memory. Our mission is to help make the lives of individuals and their families battling this life-threatening disease more manageable by providing financial assistance and support.

Unfortunately, there isn’t a lot of support out there for spouses of CF patients specifically, and I hope that changes someday. It’s clear to me that CF spouses are in a unique situation, and that we can benefit from the wisdom and experience of others like us. I hope that people like myself will share their stories so that others in our situation can be more informed and thus more involved in their loved one’s treatment plan.

Ashley was an amazing woman who lived her life on her terms, not CF’s. She accomplished a great deal in her short time here with us and brought joy and happiness to so many. I wish we would have had the future we planned, but I’m grateful for the time we had, and I’m a better person for having known her.

I would not change a thing aside from learning more about CF earlier. It’s the one regret that I do have. I wish I had asked some of those important health questions sooner and pushed a little more back then. But like I said, I knew she knew more about CF than I did, and I always thought she’d be okay, so I tried not to press her too much. Perhaps I was also a bit afraid of knowing the answers to certain questions.

So, I implore you: if you are in a similar situation, be persistent and ask those questions. Ashley was forthcoming with me and even agreed to let me come with her to future doctor’s appointments, but I think she always felt like CF was her problem and wanted to deal with it herself. That meant refusing to let it govern her life or her relationships. That’s the type of person she was.

As a partner of someone with CF, it’s so important to be involved in the treatment process and be as informed as you can. Teamwork is vital to keeping your spouse as healthy as possible.

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