My mother is a whole lot of things - she is kind, she is brave, she is beautiful, she is selfless - she runs marathons, she can grow just about anything in her garden, she knows about every bird in the sky and every phase of the moon, and there's never been a single sunset wasted on her. She beams with joy, and it is contagious. You'd hardly know she is living with an invisible disease.
That disease is PBC, or Primary Biliary Cholangitis, a fairly rare autoimmune disease of the liver. Toward the end of summer, I had an opportunity to work on a project documenting the lives of women with PBC. This project is called LiveHer, which combines “liver” and “her” because PBC is a liver disease that primarily affects women.
LiveHer is extra personal for me because my mother was diagnosed with PBC in 2011. Before I set out to shoot it, I was aware of what it meant to live with PBC, but only what I saw through my mother, and she seems pretty healthy. Throughout this project, I ended up learning more about my mom – who has some fears about PBC beyond what I’d realized – and about two other super special women navigating their own journeys with this disease.
Read on for my reflections on my shoots with each of these women, and definitely check out www.Facebook.com/LiveHerPBC to see their stories and the full collection of photographs.
TEXAS/Debbie (to me, she’s mom)
My mom, Debbie, lives outside of Austin, Texas on 20 acres. She has sprawling gardens, fruit trees, a pond, a great big tractor, and her dream house with a wrap porch that provides a perfect view of the endless big-skied sunsets. The birds sit along the telephone pole wires along the half-mile of driveway and she says that they wait for her to get home from work and follow her over to the house. The whole slice of land feels like it was brought to life by her.
When my mom was diagnosed with PBC, I remember her telling us over and over that she would be FINE. That's her way of making sure no one worries about her (she wants to be the one worrying about everyone else). She was diagnosed with stage 3 cirrhosis of her liver (and just a note that PBC is NOT linked to excess alcohol consumption, though the word ‘cirrhosis’ can confuse people about that). When you get to stage 4, it's often time to start looking into transplant options, and hearing that made it feel pretty scary. Luckily, the treatment regimen she's on now has stabilized her liver enzymes and allows her to live an almost completely normal life. Recently my mom has started going to conferences to meet other women living with PBC, which has given her more courage to open up about her experience and a fresh perspective on her own situation.
I am grateful for the days I spent in Texas with my mother for this project. Aside from the four magical sunsets in a row that we sat and watched together, I walked away with a greater understanding of her life with PBC. Liver disease doesn’t define her – my mom is so much more than that.
Brandi lives outside of Springfield on 17 acres, in a home that she and her husband built with their own two hands (or four, I suppose is more accurate). After seeing the house, I was impressed to say the least. What also amazed me about Brandi is that she spends her days helping victims of violent and sexual crime, which shows her passion for helping others in the most difficult and unimaginable situations. Brandi was diagnosed with PBC in 2016 at the young age of 34. Most women with PBC get diagnosed in their 50's, so Brandi is relatively young to be diagnosed with PBC.
Like my mom, you wouldn't know that Brandi is living with a serious liver disease. She is kind, quiet and measured, although once you spend a little time with her, she starts to feel like someone you've known forever. Thankfully Brandi’s early diagnosis has allowed her the opportunity to adjust her life and find out what works best for her.
Brandi's grandmother also had PBC. Her grandmother had a liver transplant at the age of 60 and went on to live a long life, though she sadly passed away before Brandi was diagnosed. Brandi and her husband actually still have the tractor that her grandfather rigged up to give her grandmother a ride from the driveway right up to the house after her transplant surgery. Before shooting this project, I was not aware that PBC could sometimes run in families. This knowledge has given me motivation to talk to my own doctor about my liver health. The exact cause of PBC is unknown, though I’ve learned that routine liver blood tests are a common way people are diagnosed. One of the reasons I wanted to take part in this project was simply to bring awareness to this disease. If more women know about PBC, maybe it will come up in more conversations with their doctors and they can be screened.
THE DOMINICAN REPUBLIC/Bel
Bel has this kind of magical energy about her that draws you in and allows you to share in her excitement for life. She has PBC, but she’s so much more than that. She is fighting for her life. Not only is Bel a single mom, she is a professor during the school year, and lectures on cruise ships in the summer. In her downtime, she spends time with her family in the Dominican Republic, where she grew up. She lives in Santiago and just outside of the city, her family has an amazing coffee farm that grows way more than coffee – the most gorgeous fruits, vegetables and other plants that you can imagine. It was truly amazing to explore both the city and the farm with Bel. While Bel’s health is precarious, she lit up showing us all the places, things and people that she held so dear.
It was difficult for Bel to get a proper diagnosis and the state of her liver now is dire. During our shoot, she explained that she has been on the liver transplant list for years without any luck. Note – if you are not currently listed as an organ donor, please consider being one, you could give someone the rest of their life back. Bel is so clearly loved by so many people, and I hope she finds an organ donor soon!
But in the meantime, Bel’s day-to-day life is not without many challenges, both emotionally and physically – with symptoms such as itching (pruritus) and fatigue. I remember her telling me that the pain of the itch was so deep that she wished she could “bleed out all of the dirty blood”. It was really hard to watch her sit in a chair and use a fork and an old plastic door mat to scratch her feet to alleviate the constant pain. It was emotional for me to see someone who is so full of life, who is just trying to live, and struggles daily, not knowing what her future holds.
This trip was extremely beautiful, difficult, humbling and enlightening. The picturesque Dominican jungles juxtaposed against the somewhat chaotic city seem to be a metaphor for Bel and her suffering.
I am so humbled to have been a part of this project and grateful to have spent time with these beautiful, courageous women.
Again, please check out www.Facebook.com/LiveHerPBC to see the collection of photographs, I hope you enjoy.