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Measured by Numbers

I find it important to start with a little background for the work I have chosen for my growing series “Measured by Numbers”. In 2013 I was diagnosed with Endometriosis and from that point on it has been an internal battle of chronic pain and emotional suffering. Good days were far and few between at the start, however with each surgery (seven to date) pain changed and good days happen more frequently. In 2017 I had two surgeries and had to make the difficult decision that my body was too tired and getting too old to fight for having a child. Without expanding into too many details, that year also consisted of therapy, joining Facebook groups with other Endo sufferers, and a partial hysterectomy. What also occurred is my need to talk about and share my experience with this hellacious incurable disease with as many people as I could. As I found my voice through conversation so did my need for sharing other’s stories and their arduous journey with Endometriosis. “Measured by Numbers” is a personal project that will eventually consist of portraits, documentary, lifestyle photographic storytelling, as well as shared interviews of each woman that has participated in the project. The informative text that will pair with the images will discusses the issues around medication, type of care, forms of treatment, support systems, and more.
The selected images I’ve included are inspired by interviews and from them a word intuitively comes to mind that then becomes the basis and theme for their imagery and more so for their portrait. Like with Lisa Howard, who is an amazing support person and writes a blog about the disease,, she facilitates an awareness march during Endo Awareness month in March, runs two Facebook groups for women in Southern California one for those that suffer and another that includes their support people. She is instrumental in my growth and knowledge as a sufferer of the disease. Her word is “Foundation” which is also the title of her imagery and was inspired by her interview.
Another image is a woman who has chosen to be anonymous for a variety of personal reasons. Her image is inspired by what Endometriosis suffers call “Endo Fog” and is title her portrait. Most people have days and moments when their mind seems fuzzy, or they can’t quite get their thoughts together. For those that suffer from Endometriosis this is often times a daily occurrence due to the extreme amounts of chronic fatigue, stress, and chronic pain. The chronic fatigue is linked to “distractions and stress that can come with chronic pain, depression, and anxiety — all common traits of endometriosis” writes Jessica Duffin in her piece on “Seeing Through the Endo Brain Fog (Part 1) for Endometriosis News, April 2018.
Optimism and Solitude are certainly two emotions and states of being anyone struggles with when dealing with pain and suffering of any kind. To be optimistic is challenging for many it always seems easier to be negative and pessimistic. One must work immensely on self-care, remain joyful and be optimistic despite what our body tells us. And that is why Andi VanHeel’s image is titled “Optimism”. Despite many of her health complexities for me she always remains positive and joyful. When those who suffer from Endometriosis, an incurable disease for most, we often feel like we are in complete solitude. We feel alone in that many don’t understand and don’t want to, that because they can’t see it then it doesn’t exist and its in your head. Or even perhaps we don’t fully understand why we have this disease and are grasping at why and how. So, loneliness and solitude become our friends. When I first meet Brooklyn Benedix featured in the “Solitude” portrait these were a small few of the thing she was coping with. But as time goes on, we evolve and often once was is no longer.
My hope is that with the portraits, documentary imagery, and the text from the interviews as well as professionals in the Endometriosis subspecialty field such as OBGYN’s, surgeons, therapists and so on, a book and traveling exhibition will be created. All proceeds from the book will go to fund Endometriosis research, the exhibition will provide information and awareness to the incurable disease that affects 17.9 million people worldwide, we are 1 in 10. Yellow is the common visual thread that runs throughout the body of work and is the Endometriosis awareness color. With every step of our process, we are measured by numbers, be it pain level, statistics, what stage we are in, how many milligrams of pills we take, our insurance number, our time slot for an appointment or surgery on day of a week in a month. We are “Measured by Numbers”.
The images are a manifestation of the light that one emanates regardless of their pain and suffering. They are a physical representation of the beauty and strength each individual holds onto despite the complexities of the harsh realities of Endometriosis. They exude the word “Warrior” as many do who suffer, but still thrive and move forward with their whole heart. Each image is a still moment filled with the power and strength of their individual stories.
The ultimate goal for any artist is to possess one’s gaze and to stir emotions within their soul to find connection of meaning. My work has to encompass this trait and to capture something beyond what can be explained and perhaps seen. The goal of my work is to always to exude my passion as a storyteller and to ooze experimentation, thoughtful details, reinvention of self and concepts, and at its core a visual replication of my beliefs and life experience. The photographic art I create has to first please my seeing eye and embody my beliefs as an artist and person on this planet. These ideals are part of my photographic belief system and are my aesthetic as a creator.

Brandy Sebastian

*Images sold will help sponsor the next portrait.

Measured by Numbers:  "Foundation"Measured by Numbers:  "Endo Fog"Measured by Numbers:  “Optimism”Measured by Numbers:  "Solitude"