Photo: Choirs with Purpose
A team of organizers reached out to the Cystic Fibrosis Trust, a Scottish charity foundation in Scotland, in order to see if they could recruit a small group of adolescents with cystic fibrosis for an album that they were working on called “Stand Together.”
Unfortunately, due to the nature of cystic fibrosis, any infections that take hold run the risk of causing severe, often long-term damage to the lungs or other nearby organs. Thick and obstructive mucus that covers these organs makes it extremely difficult for medication to have any positive impact, and the mucus offers bacteria ideal conditions for multiplying and spreading. This, among other complications, makes it incredibly difficult for the body to defeat infection on its own.
A strong sense of community
Over the years, individuals with cystic fibrosis have found ways to come together to form strong communities of empowered, determined individuals. Families, supporters, and entire communities have rallied around individuals with cystic fibrosis in an attempt to find a cure and find new ways to improve the quality of life for affected individuals around the world. The results have led to vastly greater lifespans, less burdensome treatment options, genetically engineered medications, and a strong sense of hope and community among those involved.
As the prognosis continues to improve for those living with the condition, technology is making opportunities that were once off-limits more and more feasible. Among the remaining barriers for those with cystic fibrosis is the prospect of collaborative activity with other individuals who have cystic fibrosis. Anything that involves person-to-person contact poses a risk for those with cystic fibrosis, but the risk of infection increases between two people with cystic fibrosis. They stand at greater risk of infecting one another through a process called cross-infection.
High Risk of Cross-Infection
Since the mucus of individuals with cystic fibrosis is so conducive to bacterial growth and multiplication, it is dangerous for two people with cystic fibrosis to come into contact with each others’ phlegm, mucus, or sputum. Activities like shaking hands, sharing drinks, sharing medical equipment, hugging, and kissing involve coming into contact with other people’s mucous membranes, and this can carry an extremely high risk for individuals already at risk of developing severe infections. This can make romantic and sibling relationships between two people with cystic fibrosis extremely difficult.
The Cystic Fibrosis Foundation outlines a few general guidelines for reducing the risk of cross-infection, including the general rule that two individuals with cystic fibrosis should stay at least 6 feet away from other individuals with the condition. Coughing and sneezing can send dangerous mucus and bacteria through the air across considerable distances, and being exposed to these airborne pathogens can have lasting consequences for individuals with cystic fibrosis that become infected. For this reason, even having two individuals with cystic fibrosis in the same enclosed room can be a medical risk.
Choirs with purpose
The “Stand Together” project was a collaborative record featuring various charity group and with the purpose of showing solidarity in the light of difficult or adverse circumstances. A choir of individuals with cystic fibrosis seemed the perfect fit for the project, which was backed by Sir Paul McCartney who signed all royalties away to the charities involved.
The group in charge of coordinating the event, Choirs with Purpose, did not realize how difficult their request would be to carry out. The risk of cross-infection was significantly increased with not two, but several young adults in a small, enclosed space, singing in close proximity to one another. Physicians and caretakers of the youth with cystic fibrosis were unwilling to grant Choirs with Purpose permission to host the children in the same room together, and for a moment, it appeared that having a choir of individuals with cystic fibrosis would simply be another limitation to an already burdened group of people.
Yet Choirs with Purpose was persistent. James and Clare, the two representatives in charge of hosting and coordinating the event, came up with an idea that would allow all of the members of a cystic fibrosis choir to sing together, if not at the same time and in the same room. Using modern recording technology, James and Clare pitched the idea of having each individual come into the studio and record a solo part, which would then be combined with all of the other parts to form a whole choir piece.
The Cystic Fibrosis Trust was thrilled, and approved twelve individuals with cystic fibrosis for the project. Before each individual was brought into the studio, the recording room was deep-cleaned using disinfectant cleaning products, and everything was made as sterile as possible so as to reduce the opportunity for infection and the spreading of germs. One by one, the members of the new choir came in and recorded their parts, not having the opportunity to stand and sing together face to face, but feeling a great part of something nonetheless. They became the first ever choir for individuals with cystic fibrosis: The Cystic Fibrosis Virtual Choir.
Individually, the group recorded a song called “One Voice,” originally written and recorded by The Wailin’ Jennys, a Canadian folk and bluegrass trio. The song begins with only one voice, growing and growing until it becomes a choral anthem, made even more powerful by the message and inspiration for The Cystic Fibrosis Virtual Choir’s cover of the song. Eventually, the choir sings “this is the sound of all of us / singing with love and the will to trust.”
All involved in the making of the song were greatly impacted by the lives and stories of the individuals who contributed their voice, each of whom represent all others who live with the daily burdens of managing and battling cystic fibrosis. For many, even the opportunity to video chat and become friends with the other members of the choir was a leap in quality of life that would not have been available to individuals with cystic fibrosis until very recently. All participants walked away from the experience with new friends and a song that centralized the message of hope for those living with cystic fibrosis.
As technologies continue to improve, there may soon be a day where all individuals with cystic fibrosis are able to band together and meet in person, sharing in each other’s struggles and celebrating each other’s victories. For now, “Stand Together” acts as a strong message to all who would not have believed in the project’s possibility and success, including some members who opted to participate in the program. As in all things, it is often the act of carrying hope that brings about the greatest change, and for those with cystic fibrosis, hope will go a long way in discovering a cure and raising the quality of life for all who live with the illness.