A lot of the time when people find out I have CF, they’re pretty surprised since they know me first as a singer. I think that’s a good thing, because it means that as much as my CF has challenged me, it also isn’t immediately apparent to the audience that anything is amiss. And most people don’t really have any idea what challenges CF gives me as a singer. My CF has made me work harder at my vocal technique so I can use every bit of air I breathe to its best effect. My study of singing over the past fifteen years or so has involved a lot of practice and experimentation to figure out how best to manage my disease, balancing the art of creating music with the science of maintaining a healthy body.
So without further ado, here is a short primer on what being a singer with CF entails:
(Warning: Science content below! Seriously, if you’re prone to squeamishness, put on your scientific-objectivity hat because medical honesty is not pretty.)
1) Reduced lung function
Chronic lung infections are the biggest problem for almost everyone with CF. One of the major problems with CF is that cilia, the little hairs in your airways that help clear out any junk (let’s be honest, “junk” is just a euphemism for “mucus”), don’t work. That means that the junk just sits in your lungs unless it’s forcibly removed. There are a number of bacterial organisms that just love to grow in that cozy, stagnant pile of junk. They grow into a hideous web of goo that blocks off entire sections of the lungs. People with this condition don’t look, or sometimes even feel, sick, which is why it’s called “walking pneumonia.” I’ve had a chronic infection with the bacteria Pseudomonas aeruginosa for about 20 years now.
People with CF face, on average, a decline in lung function of about 1% per year. I’m still considered relatively healthy and my lung function fluctuates between 60-70% of what is “normal” for someone my age and size. That means I’ve only got about two-thirds as much air in my lungs as most people do, with which to sing phrases just as long as they can. It is, to be frank, flippin’ hard. But I’ve learned a lot of ways to be as efficient as possible with the breath I do have. And yeah, I cheat when necessary. A catch breath in the middle of a phrase is not the worst crime a singer can commit (took me 15 years to come to terms with that).
My sinuses are almost always inflamed and/or post-nasal-drippy. Especially when I exercise. And singing definitely counts as airway exercise. There is nothing like the feeling of reaching a soaring high note, only to be distracted halfway through it by that sudden buzzsaw-like sound that seems SO LOUD I swear the people in the back row can hear the snot jiggling loose. I can haz pretty?!
3) The mucus
Oooh, the mucus. See, the thing about CF is that I have to do regular airway-clearance therapies to remove the junk from my lungs, to prevent infection (and a worsening of the infection that’s already there). I will not describe in detail how I do that, but suffice it to say that things like vibrations, quick breaths (like when I’m running or doing cardio), and anything involving squeezing all the air out of my lungs triggers my lungs to suddenly, forcibly expel whatever is in them. This does not lend itself well to singing. Think about it, your vocal mechanism is creating vibrations, you’re singing long phrases that require expelling a whole lot of air from the lungs, and sometimes you’re doing all this while dancing around and – ahem – jiggling those lungs around.
For that reason, I always do a session of airway clearance before a performance (and 90% of the time, before rehearsals as well), in order to get all the junk out beforehand. The trick is expelling the junk without irritating the airways in such a way as to wear out the voice. (Autogenic drainage is the CF-opera-singer’s best friend. The respiratory therapist at my CF clinic says my technique is positively inspiring. He wants to videotape me and show it to all his patients. Science!)
4) Scar tissue where healthy lung tissue should be
Chronic lung infections destroy lung tissue, leaving scar tissue where healthy lung tissue once was. The thing about scar tissue is, it’s not as supple and flexible as normal lung tissue. It doesn’t respond as quickly when you breathe. That’s fine if you have time to take a deep, yoga-style breath, allowing every inch of your lungs to expand to their fullest. It’s not so great if you’re in the middle of a quick passage with an eighth rest for a breath. Combine that with all the junk in my lungs that feels like glue if my airways close too far, and it’s just not possible for me to use 100% of my (already limited) lung capacity while I sing.
That means my lungs are stiff, and sticky, and take their own sweet time to expand, so I have to leave them in a partially-expanded state if I’m going to be able to continue singing another phrase. As much as I would love to use a little more air and extend that oh-so-gorgeous note a little longer, I have to reserve it to keep my lungs inflated enough to allow a quick recovery breath and simultaneously avoid coughing. I’ve had vocal coaches comment before that “it sounds like you have more air left” when I cut off a note early, and that’s because I do. It’s a fine line, really, and it takes really being in tune with my body’s abilities on a given day to know just how far I can push my lungs without collapsing in a hack-fest.
5) The daily fight to stay healthy enough to do what I love (singing, among other things)
Taking care of my health is a part-time job. In a typical day, I do an hour of nebulizers/airway clearance in the morning, and a half hour to 45 minutes again in the evening (or before rehearsals/performances if I have any that day). Weight gain/maintenance is a problem with CF, so I have to plan my meals out and allow ample time to prepare food and eat it. I have to remember over a dozen pills every day, some of which have to be timed around when I will be eating. And I really should get some aerobic exercise for at least 30 minutes every day (I feel SO much better when I do), but usually I manage 3-4 days/week. So even when I’m healthy, that’s about four hours of my day devoted just to maintaining my baseline. When I get sick, antibiotic treatments (more nebulizers, or in some cases, IVs) can add another 2-4 hours to that. Quick math check, that’s 6-8 hours/day, which is a full time job. Though I haven’t gotten to this point myself, I did some research a couple of years ago and learned that people with CF who have lung functions under 50% qualify for federal Social Security disability benefits, and that’s exactly why. There’s no time to work a full-time job when taking care of yourself takes the majority of your waking hours.
But it’s all necessary to keep me healthy and keep me able to do the things I love. Singing, dancing, rock climbing, skiing, and such. Fortunately, many of the things that I love also happen to be good exercise for my lungs, so there’s a natural way to obtain some balance in my daily life so it doesn’t all feel so overwhelming. My doctors and I believe that singing is one of the things that has kept me healthy over the long term. Together we’ve even decided to forego one of the antibiotics that I could use, because it makes me hoarse and leaves me unable to sing for about six weeks. (Breaking news today is that there may be a new form of that antibiotic coming to market soon – time will tell whether it will cause the same problem for me.) Quality-of-life-wise, the cost-benefit analysis of using that particular drug was just too high.
It’s a continuous process learning how to live life to the fullest with this disease, but the work so far has paid off, and the reward is immeasurable.
(That’s me second from the left, as Chloe in “Princess Ida” at Seattle G&S.)