Music brought us together.  CF keeps us apart.

In January of this year, I made a new friend.  Her name is Ashley Ballou-Bonnema. 

Truth be told, I honestly don’t remember how I found her blog, Breathe Bravely. But I do know that from the moment I first read her writing, and learned about her project SingSpire to give voice lessons to people with CF, I wanted to be her friend. 

Have you ever read someone’s writing and felt such a deep and true connection that you were compelled to reach out and say, “I get you?”  Ashley was one of those people who I felt had been put into my path for a reason. 

You see, like me, Ashley is a classically-trained singer. And also like me, Ashley has Cystic Fibrosis.  

It’s actually amazing that I didn’t find her sooner.  Several years ago, when I was offered my first contract as a soloist with a professional opera company, I scoured the web searching for anyone out there who had some similar experience that I could compare notes with.  CF is an unpredictable disease that can turn on a dime, and I had to be healthy and ready to perform the role when the time came, several months in the future. (Operas are typically cast far in advance – in this field it’s totally normal to be booked several months to even years ahead of time.) 

Having performed as a chorister in over a dozen operas by that point, I knew what to expect in terms of the production schedule, but never had so much been riding on my lungs being in peak condition at a given time. It’s a lot harder to hide a stray sinus rattle or cough as a soloist than it is in the chorus. I had to be ready to rehearse intensively for several weeks, be healthy and strong enough to dance on stage, and most importantly have the lung capacity and stamina to sing as a soloist up to my highest standards.  

Accordingly, I looked high and low for anyone who might have some idea of what was involved, and how they’d stayed healthy in similar circumstances.  I did stumble upon a pilot study in the UK called BreathCycle that was training CF patients in classical singing as a physiotherapy technique (which was fascinating – and affirming of what I’d experienced in my own life). The study doctor connected me with a handful of other singers with CF . . . some voice teachers, and a pop singer named Bianca Nicholas (now Bianca Maguire, who later would represent the UK in the Eurovision Song Contest and who recently invited me to participate in the Cystic Fibrosis Choir that she organized).

So I did make a few new friends with CF . . . but no opera singers.  I was on my own.  

Feeling like a bit of a pioneer, I dug in to the role just doing what I knew best, and trusting that I knew my body well enough to work though anything that cropped up.  The opera turned out quite well and my performance was very well received; I’ve since been rehired by the same opera company for several other roles, and have also started working with them as a choreographer.

I’ve accordingly learned a heck of a lot about how to manage my health amid crazy production schedules, and I’ve been able to apply that knowledge elsewhere (like filming a full season of an Emmy-winning TV series in Sweden). And I’ve had a few other singers with CF reach out to me in recent years, including a Canadian woman studying opera performance in college, who is still singing even while on the waiting list for a lung transplant.  

So now imagine my delight at suddenly finding not only another classical singer with CF who’s worked at a professional level, but she lives in the US, is close to me in age, and she actually started a program to train people with CF how to sing!  We were destined to cross paths eventually, and I’m so, so glad that we did.  

Ashley is some of those people whose positive energy lights up a room.  From the moment I first met her on Skype, we found we were kindred spirits.  Never in my life had I met someone who truly understood what I had been through, really.  Who knew about finding ways to breathe life into a phrase when there just isn’t as much air in your lungs as there should be. Who understood the fear of sharing your diagnosis with your professional peers.  Who had experienced just how helpful singing was . . . to our respiratory health, yes, but also to our quality of life. Our joy. Our empathy. Our ability to connect with others and find common ground.  

To say that we became fast friends is an understatement.  We binge-watched each others performance videos and started talking about singing together pretty much as soon as we met.  By June, we were tossing repertoire ideas around.  By September, we were co-hosting a panel at BreatheCon about singing with CF.  In the fall when we got serious about recording a Christmas song together, one major obstacle was in the way . . .

People with CF can’t safely meet in person.

The bacteria that live in our lungs, and their various antibiotic resistances, can be transmitted to other people with CF.  Non-CF lungs aren’t impacted by this (except in exceptional cases), but it is dangerous and potentially life-threatening for us to be in the same room, breathing the same air, even touching the same doorknobs.  

The irony is that although CF keeps us apart, it is also what brought us together. And as much as we fight this genetic, chronic, life-threatening illness . . . it has made our lives richer.  As much as we struggle to balance our daily treatment regimen and not let our disease define us . . . it has been a gift that helps us appreciate every breath, every moment, every day.  CF may keep us apart, but without it we never would have found each other and forged this friendship.  

We decided that if we were going to be able to collaborate musically, we would have to figure out how to do it remotely.  I had been learning about recording and audio production as I’m training to work in voiceover, so I helped Ashley create a home recording setup that mirrors mine to get a similar sound.  We sent files back and forth as we developed our arrangement, dividing up verses, creating harmonies. 

The first time I heard our two voices together in harmony, it was pure magic. For the first time, we were able to truly create something together.  We built off of the inspiration we gave each other. 

This is what a Breath of Heaven feels like. 

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