Interview with Ellen Spencer

Spirited Woman Q & A

By Nancy Mills

Ellen (El) Spencer is an inspirational “upper.” One of those people who fill life with their spirit, and celebrate it with gusto. I first met El Spencer last year, when she attended the Spirited Woman Workshop in Oakland, CA — the city in which she resides. I was completely taken with her as she bounced through the door, bubbling with enthusiasm, a twinkle in her eye, all raring to talk and meet and help and support the women in our workshop.

Her fighting spirit and nurturing way touched us all that day and since then El has become a treasured friend. Only 38 years old, El has had many highs and lows in her life. A celebrated artist known for her colorful paintings of women, she is also a dedicated environmentalist, poet, woman’s activist and health advocate, and an all around champ for the underdog. But, she is also a woman who suffers from a severe case of endometriosis, an extremely painful tissue related disease that affects the outer surface of the uterus and other areas.

Endometriosis has caused her enormous pain, numerous surgeries, and due to the complications of the disease, she and her beloved husband Jared cannot bear children of their own. Personally, I believe she is one of the bravest people that I know. Through her tears, always comes laughter. And no matter how much she faces, she is always ready to give back to others — pain or not.

She has donated her artwork to countless women’s organizations and she prides herself on “living in the moment” a rich, passion-filled life. With her identical twin sister Karen (who lives on the East Coast), and the support of her other two sisters, her husband, family, and her many friends, El is on a boundless roll. Her story is one of joy, courage, and compassion, and the true ability to reach down deep within and survive. Here’s El.

Q. You are passionate about your art, the environment, women’s health issues, and so much more. Is being passionate part of your DNA or is it part of your life’s journey?

A. Being passionate is something that was passed on to me from the women in my family, but it also became my journey — as in passion for my art and the environment. It is the one word that defines my life at this point. The passion in my family started with my grandmother who was a breast cancer survivor and she became passionate about life and living in the moment and she taught that to my mother. It was a very open discussion throughout my entire childhood to find out what you are good at and always stay present — that your passion was an element that would drive you throughout your life, yet it was learned behavior for us at the same time.

Q. What message would you like to get out to the world? For instance, is there a central underlying theme to your work?

A. Basically my art represents a voice from myself, a voice from other women who at this moment do not have a voice. It is a way for me to communicate to other people. Whether it’s my art or my activism, the underlying message is to not be afraid, to feel passion, to play, to have fun. It goes so deep for me that the thread of what I do is actually more of a generational thread — there have been artists and activists in my family for generations. This is just my turn in my generation to continue this. When I speak, I speak on behalf of not just myself, but all the women who have spoken before me in my family. Women’s activism has been in my house forever. I remember the day I wrote — activism and art are my two passions — and I was 12 years old. I didn’t know what they meant. I’m still trying to connect the dots. If I donate a piece to somebody, if I have an exhibit, I put activism out there whether it’s on a piece of paper, or on a sign, or a poem beneath the painting. It’s just whatever way I can empower and enlighten I do.

Q. You have a wonderful series of paintings where you celebrate “womanhood” in all its rich textures. How do you feel we as women should celebrate ourselves daily?

A. Everyday I wake up and I close my eyes and for as many minutes as I can give myself, I meditate on being grateful. Whatever makes you feel your spirit and love who you are. Be content. Celebrate your life, but celebrate in the present. The best advice that I can give, and I’ve given this to my sisters over and over again, and to myself is to just stay present. To live in the moment, don’t forget your past and reach for your future, but celebrate your moment. Be inspired by whatever inspires you. Play and fun are huge. Humor is the best thing. I had my husband, Jared, when we were in a rough time, tickle me 10 minutes everyday. Laughter is the best medicine. I knew how important that was to make light of the situation. Dance around. We all get caught up in our lives and we forget to just feel the freedom of being ourselves.

Q. Ellen, you’ve lived with endometriosis most of your life. How old were you when you were diagnosed?

A. Well, like many others, I was misdiagnosed for many years. I was diagnosed when I was 26, but I was sick at least ten years before. Every single month I was on the bathroom floor with my head in the toilet. It was horrible. But, I had watched my twin sister Karen go through this. When we were still in high school, she had an ovarian cyst that had ruptured, and the doctors told her it was growing pains because we were about to leave for college. So we watched her stomach get bigger and bigger and she was bleeding internally for three weeks until they realized this wasn’t a growing pain, and she did have endometriosis, but they never correctly diagnosed her until they diagnosed me. Unfortunately she had many surgeries trying to figure all this out.

Q. Endometriosis causes you great chronic pain— how have you dealt with it and what advice would you give other women with constant pain?

A. That’s not an easy question. I actually started living with chronic pain after I started having the surgeries for the endometriosis. I had pain every month for many years, but it wasn’t until they started doing all these different surgeries. My husband and I were trying to have children so we were doing everything. I lost track at 19 surgeries. The chronic pain has been the toughest challenge. What I say to other women who suffer is don’t be hard on yourself. Don’t blame yourself. Never give up your hope. It’s a day-to-day thing. You never know what tomorrow’s going to bring and you’ve got to find the humor in it and you need to find good doctors that you can work with alternatively or western. But you can never give up your faith. Jared and I laugh about this, but we cry about it. It’s prevented us from adopting at this point which is the other passion in my life — children — we tried for so many years. We will adopt, but I said when I don’t have the chronic pain. And I’m still having chronic pain. The hope for me is that I watched my twin sister go through this and come out the other side. So I know that’s there light at the end of that chronic pain tunnel and I believe it will happen — I just believe I can’t let it take my days. It can’t be my days. I have to take care of the chronic pain the chronic pain can’t be me. And that’s the best advice I can give somebody — and that is don’t let it rule your life.

Q. What have you learned about your inner strength and your marital love because of your struggle with bearing children?

A. This has been the toughest because it is very difficult to watch the person that you love suffer along with you so the strength comes from deep down inside of you. You know the loss of birth children is enormous. Of course we will adopt — absolutely. I am such a late bloomer that even my grief took years before I said I’m ready to accept that it wasn’t going to happen. Everybody has their own time with this and for me I went silent and that’s why I understand if I can’t speak for women, then I hope that somebody’s speaking for me. It was so devastating for me — I had a full hysterectomy four years ago — and it was the last resort — because, I was literally physically dying. I had so many blood transfusions that it was either going to be I would keep trying and die or this is going to happen. Even into the surgery I did not believe it would happen, so when I woke up I still didn’t believe it had happened. There was a lot of denial for me and that strength had to come from the bottom of my feet to help pull me up. It came from family and friends, and of course my husband Jared — but it was a big loss. I ran the endometriosis support network for San Francisco so I had a huge network of people. The interesting part — mostly women with endometriosis have children — so I always assumed we were going to be part of that miracle. I’m one of the few that actually hasn’t had the children.

Q. You’re also an identical twin. What do you and Karen draw from each other to help fight your battles?

A. I never would have survived this without her. She is everything to me. She is who I aspire to be. She said to me one day that she never wanted me to forget what Jared had told me — it was about a year and a half a go. This is what a twin does for another twin. I had absolutely positively put it away and she said, your husband said you have so much anger and sadness and grief still in you that there is no more room left for him and he wants you back. And I need to remind you of that. And it needs to happen now and for whatever you need, I’ll be that person for you. And that’s what she was. I cried and screamed and yelled and that’s what we do for each other. We have a code — we just say, “lift me up, lift me up.” That’s all it takes. We talk everyday. Every year we get closer on so many different levels that I always know what she is thinking and doing but at the same time I do it right back for her. We have moved into each other’s homes at different times of our life for that support. The husbands have been wonderful about it — but we needed that togetherness. Together we were a whole and we fed off of that. I wish everybody had a twin — it’s the most wonderful thing I could ever imagine.

Q. What did you do to celebrate Women’s History Month this year?

A. I did several things. Part of it was the donating I did to so many groups this year. I chose this month to work on teens and body image. That to me was crucial. Women’s history month — we celebrate all the women of our generational past — but what has come up is the generational issues of body image passed on. So what we’ve done is gathered groups of teenage girls — I’m actually starting a documentary on this, of all different races to examine the women from the different generations as far back as we can go and the body image of all the women from the past.

Q. El, why do you feel that you are a spirited woman?

A. I feel that I am a spirited woman because I embrace the celebration of the spirit of life. I embrace the passion of women’s spirits, of girl’s spirits, of everything — nature — everything out there. I feel I am a spirited woman because I feel that I have a path in this life to speak on behalf of women whose spirits are not able to speak right now. That is very important to me. That’s what I think drives me to be the best spirited woman I can be — is that empowerment.

THANK YOU EL. SHOUT YOUR VOICE TO THE WORLD ALWAYS. •

© 2006 Nancy Mills

06/03/06