Salty Girls: The Bittersweet Taste Of Raising Awareness.
Since I was 11, my family has had a long-standing joke: whenever one of us craved something salty, all we needed to do was lick my baby sister.
Abigail was a very salty girl.
This joke works for my family, and for over 70,000 other families worldwide, because the skin of those born with Cystic Fibrosis (CF) is quite literally, salty to the taste.
I am not going to go into a detailed explanation of how and why the cellular mutations that cause CF result in salty skin. I am not going to provide you with a detailed explanation of the genetics of Cystic Fibrosis, except to tell you that it is a disease that one is born with.
I am not going to write about all of the signs and symptoms, the physical manifestations, the routes for diagnosis, the endless treatments, the multiple hospitalizations and surgical procedures CF patients endure, or even the state of ongoing research toward a cure… but I am going to inform you that Cystic Fibrosis is fatal.
I can’t tell you what life is like with CF, because I don’t have it. I can only tell you that, as a nurse, and as a woman who has lost a loved one to CF, I know the power and importance of awareness. I want you to be aware of the disease, and I also want you to be aware of how it affects the body image and self-esteem of those who live with it.
On the outside, fully clothed, it is quite difficult to identify someone with this disease, unless you know what to look for.
As important as it is to highlight the experiences of CFers, especially women, in regards to self-image, confidence and mental health — I also want you to be aware of what one man has done to change the way women with CF feel about their bodies, and ultimately, themselves.
I know firsthand the impact that one man’s work has had on women with Cystic Fibrosis, because of what it did for my sister. She lived in a body that denied her even the basic privilege of breath since childhood, but as an adult she learned to love it — along with its beautiful imperfections — even as it betrayed her.
I started writing this piece in the spring, intending to share it in May, for Cystic Fibrosis Awareness Month. A fitting time for publication, I figured, but I just couldn’t do it. I couldn’t write it. I could barely look at Ian’s photos without losing it. I’d pull it up, read the handful of sentences I’d written, then find myself dripping my own salty tears onto the keyboard. I just couldn’t do it.
I suppose it was because this year — this May — I was hyper-aware of the effects of this deadly disease. It was the first May since 1988 that I had to experience without my sister.
This year, I traversed the four months proceeding May… and the entire month of May… and all of the months that come after May… without the one person for whom I raise awareness of Cystic Fibrosis to begin with.
Not only have I had to go through the year without her, but so have my parents, my children, all of her friends, the kids she taught at school, her co-workers, her cousins, her classmates — our entire family, including my best friend, my one remaining sister. We have all gone through the last year without her.
And it still hurts. I find my eyes begin to sting and strain as the words slip off my fingertips and stare back at me from the screen, burning themselves into my retinas — “…my one remaining sister.” It is still so fucking surreal. Her absence, however, is completely real.
My youngest sister was diagnosed with CF when she was a baby, due to a failure to thrive. She had been losing weight instead of gaining it, despite my mother’s best efforts to give her the nutrition she needed to live and grow. This was the first manifestation of this deadly disease, but it was not the last, nor the least.
My parents spent the next two decades of their lives giving my sister daily treatments, nebulizers, medications, and spent countless hours managing her CF, until she became old enough to take charge of it herself. This in and of itself was not an easy task. Transitioning from child to adult with a fatal genetic disease is heavy stuff.
The leaden impact of navigating the insanely complicated, and often inhumane, healthcare system — depending upon people day in and day out who, at best, don’t fully understand the global implications of what life with CF entails, is just that — leaden. It can be inordinately heavy and dense and even poisonous, especially to the psyche of a young woman. Be aware — there are thousands of women across the globe dealing with this every day.
I admitted my sister, Abigail, for her final CF related hospitalization on November 29, 2014 — the Saturday after Thanksgiving, and the same day that my last piece on Rebelle Society was published. The article was about the role of music and sound in healing. I didn’t read it that day, or share it. I was busy with my sister.
My entire family was occupied with my sister last holiday season. We were all together for the holidays. In fact, we spent 18 days together in a handful of hospital rooms with Abigail. Ultimately, her body did not heal as we had wished for, nor did she get the lung transplant we all so desperately hoped might add a few more years to her life. She did, however, finally regain her breath and earn her wings.
Abigail died on December 17, 2014, but not without first showing each and every one of us exactly what grace is.
There are several routes to healing, and several of the most effective pathways are creative in nature.The role of art in healing is at the forefront of why I share this piece. Whether it be dance, music, art or photography, as is the case with the Salty Girls Project, art heals.
I have to write to heal, I know this about myself. I’ve tried other methods, but none works as well as when I put words out into the world. As readers, we may not always grasp the full catharsis of a writer’s expression, and you may not know how healing this is for me. Suffice it to say these are words that turn my throat into a burning, dry and deserted place, and are still torturous to type. That is exactly why I have to get them out.
I’ve been choking on these words all year, it seems.
My sister ate a small bowl of tomato soup for her final Thanksgiving dinner. She could no longer eat solid food. As the rest of the family sat down to plates piled high, I got up and walked outside. I held in my own vomit.
Or words like…
My sister wore her oxygen in public for the first and last time on the same day. It was the day school let out for Thanksgiving break.
It was the last day she ever went to work.
In addition to informing the worldwide public about Cystic Fibrosis, the photography of Ian Pettigrew highlights the challenges that adults living with CF face every single day. His Salty Girls project is the second in a series that uses photos of CFers to show the world what life is like with the disease. His first CF awareness project, Just Breathe, was born from his own diagnosis with CF.
Pettigrew, an award winning Canadian photographer, was diagnosed with CF at the tender age of 38. As so commonly manifests in CF patients, he was unable to have children, and ultimately learned of his diagnosis during infertility testing. His diagnosis as an adult is somewhat of an anomaly, and led him to seek out others in this new community to which he suddenly belonged.
As a result, he embarked upon his first series of photographs documenting the lives and stories of adults with CF.
His work is especially relevant now, as research toward a cure for CF has resulted in longer lives for those who are born with it. In just a quarter of a century, the life expectancy for babies born with Cystic Fibrosis has gone from 19 to nearly 40. A disease that has a history of resulting in fatality during childhood is now the daily reality for thousands of adults worldwide.
In fact, almost half of the CF population is now over the age of 18, according to the CF Foundation.
As the life expectancy for those with CF increases, they are introduced to a whole new set of challenges, including self-esteem issues that, if difficult in childhood, can seem almost insurmountable during adulthood. Living with a chronic illness comes with an array of challenges, not the least of which is dealing with the complex body image issues that many of us have even without disease.
“Imagine what it is like growing up as a woman in today’s society, where the media demands perfection, and where body-shaming has become all too prevalent. Too fat? Too thin? Too short? It is a constant struggle to maintain the concept of ‘beauty’.” ~ Ian Pettigrew, Salty Girls creator
Imagine, if you will, that your own body issues are compounded by decades of medical interventions, intense medications with considerable side effects, and the progressive physical impact of CF. Imagine that, in addition to frizzy hair and stretch marks and small/large/uneven breasts, that you have scars on your chest, abdomen and throat — marks that you can’t hide unless you want to wear turtlenecks and long sleeves every day.
Imagine that, in addition to dealing with acne and braces, you are dependent upon medical equipment for daily survival, which means oxygen tanks and insulin pumps and IV tubing and feeding tubes protruding. Imagine that, in addition to some cellulite and dimples on your ass, you also have an emaciated body, a bulging distended abdomen, and clubbed fingers from a constant lack of oxygen to your tissues.
As you can likely imagine by now, Cystic Fibrosis has the potential to drastically affect healthy self-perception. This is where Salty Girls and Ian Pettigrew come in. This is where we all get to not only imagine, but see firsthand how awareness of these issues can incite change, self-acceptance and love for each and every inch of these beautiful bodies.
This is where raising awareness meets the empowerment of women with Cystic Fibrosis.
If CF is the killer, then Salty Girls is the life-giver! I watched my sister live her life with CF as a beacon for faith, perseverance, and quiet hope — but she dealt with the same body image issues that every other woman in the world does, only compounded and multiplied by her own genetics. Portacath scars, recurring skin eruptions, vacillations in weight, and the ever-present belly… these were constants for her.
Once she got her insulin pump, she worried about boating and bathing suits in public. She was never ashamed, but she was always aware.
And then she found Salty Girls.
She found this beautiful group of amazing women living with CF, just like her, who had the courage to bare their bodies for the camera in order inspire others. The raw vulnerability that Ian Pettigrew captures with his lens is unmistakable. And the impact his photographs have had is irrefutable.
“Salty Girls have inspired other women with Cystic Fibrosis across the globe. These women embrace their bodies, scars and all, to inspire women everywhere… they truly are the epitome of remarkable strength, enormous resilience, and unique beauty both inside and out.” ~ Ian Pettigrew
These are real girls, dealing with the real life battles that arise from living with a chronic and fatal illness. These are real women finding strength and happiness through art. These are real cysters who are healing from their battle scars day by day, and learning to love their bodies exactly as they are, all as a result of Pettigrew’s work.
These women inspired my sister to find a sense of pride in her body, even as it failed her. These Salty Girls, these Women of Cystic Fibrosis, are a worldwide community, a global force, and a genetic phenomenon, who are truly phenomenal in their ability to inspire.
They elevate and celebrate each other, and they are shifting perceptions of adults with Cystic Fibrosis to include beauty, sexiness and empowerment. All while increasing awareness of CF through Pettigrew’s creative lens.
For my family and I, this project represents a manifestation of all we know and love about facing challenges, rallying support, and moving forward with life. If Abigail were still alive, you can bet your ass she would have made a trip to Daytona this year to meet Ian and others just like her.
If our Salty Girl were still here, she would be lauding and sharing this work, to help the world understand what women like her have conquered, and what they go through every single day with Cystic Fibrosis.
As empowering and inspiring and downright amazing as the Salty Girls Project is, the bittersweet reality remains. As Ian compiled his photographs from his shoots, even before the release of his book, the world lost some of these daring beauties. As the Salty Girls books came out, and worldwide distribution began, Cystic Fibrosis claimed even more of these bodies back.
As a member of one of the thousands of families who know both the beauty and the loss that this project embodies, we have chosen to use Pettigrew’s work as a vehicle for our own healing. It’s hard to heal from any loss, however it comes, whenever and whatever the circumstances. But heal we must. And we have decided to carry on with our efforts at spreading awareness of Cystic Fibrosis.
We have chosen to purchase enough Salty Girls books to place one in each and every state in the U.S., positioning these inspiring women in all of the Cystic Fibrosis centers across the country. It is our way of spreading awareness and helping to spread the Salty Girls’ message of empowerment to others just like them. Abigail didn’t make it to a Salty Girls shoot, and she didn’t make it to all 50 states. But she will.
What she did achieve was to live a life that made everyone around her happy. She was a ray of light. She reflected every beautiful quality that each and every one of these women reveals to the camera. She made us proud. She made us humble. She made us laugh and cry, and she did it without a complaint. She never asked, “Why me?” She never really questioned her disease. She dealt with it. She was aware. She lived with it. Every day.
And with every battle she was sweet. She was so damn sweet, every step of the way. Never bitter. Not even as she gained her wings.
Abigail was our beautiful Salty Girl. And thanks to Pettigrew, she, and all the other resilient Women of Cystic Fibrosis, will never completely fly away.
“Art is man’s distinctly human way of fighting death.” ~ Leonard Baskin
You can find and follow the Salty Girls project on Facebook.
Many thanks to Ian Pettigrew for the use of his creative images, and the utmost of respect and adoration to all of the Salty Girls who have been a part of this project.
You inspire us all daily.
In Memoriam: All those with Cystic Fibrosis who have gained their wings, and can now breathe easy.