London-born Gemma Levine’s career as a photographer began in 1975, and since then she has published 20 books of photographs and shown over 60 exhibitions worldwide. Ms. Levine is best known for her striking black and white photographs of major contemporary British people. These include politicians, sportsmen, actors, artists, writers, dancers, and important business figures. Her portrait of Princess Diana was chosen by Buckingham Palace as Diana’s official portrait for 1995 and some of her other portraits are featured in the National Portrait Gallery.
Ms. Levine—who has had lymphedema in her right arm for nine years— has worked solidly to raise awareness for lymphedema research. These efforts include the books “Let’s Talk Lympheodema” (2017) and the just-published “Aqua.” Ms. Levine recently joined LE&RN’s Honorary Board.
How did your new photo book, Aqua, come about?
One night I was with an artist friend of mine when I mentioned that I wanted to do another book to raise awareness about lymphedema. Except I didn’t know what the theme should be. My friend took my swollen arm in her hands and said, “Your theme is right here. Look at it!” And she was right. My arm is full of water (lymph) that can’t be distributed, gets stuck, and then swells. So I got together some of my photographs of water and took a lot more. I asked my friend and previous collaborator, Dr. Peter Mortimer, if he would write the captions to the photos and he did. Very successfully, I might say. And then Dame Judi Dench, who is a friend and also on LE&RN’s Honorary Board, agreed to write the preface. Because it was during lockdown, I couldn’t get a publisher, so I decided to do it on my own and find a printer. It’s unusual because how many serious medical books do you find that are illustrated by very simple photographs? It’s perfect for the lay person. Somebody not knowing anything about LE can learn a lot from reading the short captions and at the same time glancing at the photographs across the page.
As you did with Let’s Talk Lymphoedema, you’re offering LE&RN Aqua to distribute globally. What is your hope in doing this?
For me, it’s the very best way of reaching people worldwide and to raise awareness for a cause both me and LE&RN are working for day and night. LE&RN’s CEO, William Repicci, has a passion to achieve awareness that is nearest to my own. I first learned about Bill from Peter Mortimer. He told me about Bill and LE&RN and invited him to write a chapter for our first book, Let’s Talk Lymphoedema. I was extremely impressed with the chapter that Bill wrote—on raising awareness for this disease—as well as to discover his and LE&RN’s mission to fight lymphatic diseases and lymphoedema through education and research.
Raising awareness happened to be the subject I became most interested in myself since acquiring LE. I, too, have experienced the disappointment from medical professionals when I frequently come across blank faces or when I personally posed questions to my doctors. Even when I visited my surgeon after a mastectomy, showing him my vastly swollen arm, he simply said “Oh dear, how unfortunate, you have Lymphedema!” I replied, “Lymph-o-what?!” I was then given a small leaflet and told to see a physiotherapist, with no further explanation. That was my introduction to LE. So I started asking around, I read a bit, and then I wondered how many people are told they have LE and don’t know what it is? I thought I would do a book and that’s how this all started.
As a photographer, has lymphoedema impacted you on a professional level?
Oh, yes, very much so. Very much! For 50 years I’ve been a professional photographer. Once I got LE—about 9 years ago—I couldn’t manage holding heavy cameras or lenses. My right arm just wouldn’t take it. I had to make up my mind: Forget about photography or find another way. So I went to the Apple store and told them I’d always done photography books and could they recommend a product for me to takes photos? They very kindly gave me a simple iPad to start me off and I began with that. When I’m out and don’t have the iPad with me, I just use my iPhone to take a photograph. I keep it very, very simple. My Aqua book is just iPad and iPhone photographs.
And on a personal level?
I have a problem with using my right wrist and hand. I can’t cut things properly so I’m slightly disabled in that respect. My wrist and my hand don’t function as they should, particularly since I’m getting older and it’s gotten worse. In the kitchen, I don’t use my oven because my arm reactions are slower than they used to be and if anything were too hot, I’d be in trouble. I have to find simpler methods of cooking. In addition, since I’m living on my own, I have to consciously make sure I’m carrying heavier parcels on my left side and lighter things on my right. That’s very important. But thank the Lord, I’m the sort of person who feels I have to find another way to make things work. I don’t look back and regret what I can’t do anymore. I’m much more of a positive nature.
As someone who has known and photographed so many famous people and published books with their photos, how does this compare with your new passion for photo books focused on LE?
The answer is simple. After my cancer operation and the fight for survival, I acquired lymphedema. I passionately wanted to help those like me who have suffered and are suffering, and in many cases nearly lost their lives. As my son James would say, “ It’s a no brainer!” Simply, I forgot about the joys of being frivolous and enjoying the interactions with “famous people.” Don’t underestimate this, though. That was fantastic. But it became so important to me to help others with LE in a way I think I can best do—and that is with my books. Onward!