Dara, Life With MS
Posted on August 7th, 2013
Last week’s experiment in blogging went pretty well, except for the battering I took for asking if anyone was shooting health-related stories in NYC. Well, I heard from a couple of people, including Edward Brydon, a PhD science writer with an ongoing project about a woman with MS.
Here are Edward‘s answers to how he came to photography from science, in his own words:
“Since the age of 16 I had concentrated on science for my education and career, dropping all other subjects to concentrate on it. The chance for the re-emergence of my artistic side came when I met my wife in 2004. She was studying for her poetry MFA at Sarah Lawrence College at the time, and being with her awoke the dormant, creative part of my brain.
When I then gave her a framed photograph of mine as a gift, it really sparked something I hadn’t known was there. Her reaction to that photo, as well as those of a few other people who saw it, made me I realize I had found my medium.
It’s been a long process going through the learning curve; finding out what I like or don’t like and digging deeper into what I want photography to be for me, which is certainly not a superficial practice.
In 2011 I realized I could combine photography and my background in science and health. For me that has so far been about storytelling, and after finding someone willing to collaborate with me I have committed to this long-term story about Dara living with MS.
My scientific background is in the study of viruses, so I am very much interested in pursuing more stories about human health, particularly around the concept of One Health, which is the intersection of human health, animal health and ecosystem health.
But everything comes back to connection for me—connection to land, place, and people, and the intersection of these things.”
And here’s Edward’s statement about this body of work:
Dara has multiple sclerosis, but you wouldn’t know it to look at her. She is a tall, attractive woman, with an easy laugh, a radiant smile, and a confident demeanor. But behind all that she suffers from occasional bouts of extreme fatigue, numbness in her hands and feet, burning sensations, mild confusion. All classic early symptoms of multiple sclerosis (MS). The first indication something was wrong came when she woke up the morning after Christmas Day, 2003. Dara immediately noticed her right pinky and ring finger were numb – “like, fell asleep on them trying to shake it awake, numb.” Within 5 days the feeling had progressed through her right arm and into the entire right-hand side of her trunk. After rushing to the emergency room the Doctor there told her to see a neurologist. That was New Year’s Eve 2003
Nearly ten years later she visits an MS practice one weekend every month to receive intravenous drug therapy, spending between six and eight hours each day hooked up to the slow drip, drip, drip, of the IV. So far the therapy has managed her MS well; well enough she was able to have two children, leave a job she disliked to start a freelance make-up artist career, and enjoy her time with her family. In her words “Nowhere in this journey did I experience denial. I immediately knew something was wrong and I needed to get it managed and wouldn’t stop until I had answers. The integration of my symptoms into my life overall is well managed now as I’ve become an expert on my own triggers; physically, mentally, and emotionally and am better able to help myself.”
Dara now wants to share her life with MS so that others who have been diagnosed with this disease know there are options and hope. My long-term project with Dara aims to bring the private side of her life with MS into the public for the sole expression of this purpose.
I do want to say that in a big city there are a lot of health issues that relate to all of us. Obesity, high blood pressure, diabetes, asthma, mental illnesses and more plague our neighbors. It does us all a favor to humanize these abstract (I hope for you) diseases. And I don’t think you need to go overseas to cover these issues.
I’m going to keep asking questions and looking for projects that I will hopefully be able to feature here. So if you have a project you want me to see, let me know. In fact, I have some wonderful photography coming up soon.
All photography’s courtesy of Edward Brydon
Thank you so much for featuring my story… What a fabulous recap and display of my journey and one I hope continues to inspire and motivate those living win chronic disease.
This is wonderful. Dara, God Bless and protect you. Terry Wahls is a friend of mine. Have you seen her TedX talk? PLEASE watch this.
thank you so much! I will check this out! many thanks for your prayers and support.
Thanks for sharing this Stella. Heartwarming and heartbreaking at the same time
Thank you for posting this especially after the brouhaha. I am very pleased to see there are still a folks like Dara who are brave enough in the face of adversity to think of how it can benefit others and that photographers like Ed still exist and want to use their work to help shape a better world. Good work Stella, my hat is off to you for this piece.
Wonderful to see a few folks who want to do more than “What in it for me” work.
Thanks for sharing Dana. May you continue to enjoy good health and know your triggers. Be well, and live happy!
Stella, I just wanted to pop in again and say thank you for featuring this story. I realized I should have said this before, long ago, on here. And heartfelt thanks to all those who came in to look, read, and comment, especially Dara herself who is so bravely sharing her story.