You might have heard of my late girlfriend, Mallory Smith. A frequent contributor to the CF community, Mallory was a blogger, podcaster, radio producer and more recently author of Salt in my Soul: An Unfinished Life, by Mallory Smith, published posthumously by Penguin Random House on March 12th. She passed away in November of 2017 due to complications following a double lung transplant. As a one-time CF-illiterate layman and now former boyfriend to a CF warrior, my goal is to share all that I’ve learned in the hope that others may find the same kind of love that Mallory and I did.
As any CF patient will tell you, the ability to connect with other CFers is fraught with challenges. The rare occurrence of the CF gene mutation makes for an equally rare chance of finding other duel recessive carriers. Although well equipped hospitals inevitably bring CF patients together, the irony of an immediate close-proximity restriction is not lost on any CF patient. Many have lamented how this set of initial barriers hinders the ability of CFers to seek out support from fellow patients. However, I’ve found that the same is true for the boyfriends/girlfriends of CF patients trying to seek out support as well.
In the time since Mal has passed, I’ve come to appreciate more of the subtleties of dating a CFer that were likely lost on me in the moment. As any CF patient can tell you, life can get quite hectic in a hurry – both for CFers themselves and for those that care for them. In the gaps between the fray, whenever there was time for her to catch her breath (pun intended, because what’s a piece about CF without a breathing pun anyway?), Mallory would immediately seek out the people she knew who had gone through experiences just like her own. Having access to a community of support is essential for CF patients, especially when that community includes other CF patients.
Being the partner of a CF patient is, at times, really, really hard. By extension, partners likely seek out support from much of the same community that their CF partners do – from people who understand. Yet, for however few CFers are actually in that group, there are even fewer partners of those with CF. The result is that, for however much support the boyfriends and girlfriends of CF patients get, that support likely won’t be coming from other partners of CF patients.
I never spoke to the significant other of a CFer until after Mallory passed away. In hindsight, I find that so very strange. How could I not have been interested in speaking with the few people who actually understood exactly what I was going through? Why did I not try and reach out to significant others like me who likely held the same hopes, dreams and fears that I did?
At the time, the experiences of dating a CFer were all very new, very real and very scary. However, with the overwhelming support of Mallory’s family guiding me, I was never lacking in someone to turn to for advice. For me, that made all the difference. I was lucky to have access to such a strong support network who welcomed me with open arms, but I realize now that that isn’t always the case.
Some people trying to date a person with CF don’t have access to a good support network automatically. I surely would have failed to be a solid partner to Mallory should I not have had access to my own quality community of support. My fear is that some couples either won’t get, or will be too fearful to reach out to, similar quality networks of support. My fear is that other people dating a CF patient won’t be able to experience the same kind of love that Mallory and I shared. The possibility of that reality makes me profoundly sad.
After becoming more involved with the CF community over time, I can proudly say that there are countless communities of support out there, happily waiting to share all that they know. I’ve continued to meet extraordinary CFers, some of the lucky people who are dating them, and a load of people who love them all – each of whom more than willing to lend a hand.
However, I admit that I only was able to meet this amazing community after CF had taken away the woman I loved. I admit that, while Mallory was alive, I was afraid to confirm what others surely knew already: that CF was a powerful disease, capable of inflicting great pain on the lives of those who bore its condition. At the time, I wasn’t ready to accept that reality.
So if you’re new to dating someone with CF and maybe a little nervous, or too afraid, to reach out to the wonderful CF community waiting to do all they can to help, don’t worry. I too was afraid to take that first step – to be vulnerable in front of people that I didn’t yet know. I too was afraid that I wouldn’t be able to handle the challenges of supporting a partner with CF as gracefully as a CF patient herself. There were times when I was dating Mallory when I just wished that someone had published a handbook titled “How to Not Suck at Dating a CF Patient”. I would have loved to read it.
Which is why I’m so excited to share with you that this handbook now exists. The book doesn’t share the same title, nor is the subject specifically about how to date a hottie with CF. However, what the book lacks in standard handbook fare, it makes up for in beautiful stories, compelling narrative, and an overarching life motto to “live happy” which the author swore by despite the burden of Cystic Fibrosis on her health. I’d ask you to take my word for it when I say that this book is stunning, but you don’t have to: just take hers.
Mallory didn’t live long enough to see Salt in my Soul: An Unfinished Life published. She did, however, journal from the age of 15 until her death at age 25, recording her thoughts and observations about struggles and feelings too personal to share during her life, leaving instructions for her family to publish the work when she died. Mallory hoped that her writing would offer insight to those living with, or loving someone with, chronic illness. As an LA Times and Amazon.com Bestseller, the book has done that, and so much more.
In the end, there will always be a gap in understanding that divides those with and those without CF, despite the love that CFers share with others. My hope is that Mallory’s book will help close that gap, however slight that closure may be. If you had asked me how well I knew Mallory when she was alive, I would have responded that I knew her intimately. She was my best friend – my confidante – my favorite person. However, reading her words now has allowed me to appreciate so much more of what it means to live life with, and love with, Cystic Fibrosis. I hope the same is true for you once you read her words.
Jack Goodwin and Mallory Smith met at a New Year’s Eve Party in 2015 and dated until she passed in late 2017.