Below is my speech from the Stanford University Medicine X – ED conference in April 2017 where I was a featured ePatient speaker on the main stage. I have adapted a few things to update the time frames and a few events, but otherwise the speech is the same. I have also used some of the artwork I featured in my PowerPoint presentation that day. I hope this speaks to you because I poured my heart and passion into this idea that doctors need to treat us as more than just a list of symptoms and help us process the life-changing diseases we deal with on a regular basis.
Expressing my journey gives me power. It is my conduit for progress and processing the pain. It is how I get up each day, my body having betrayed me almost seven years ago first with rheumatoid arthritis, then fibromyalgia, then osteoarthritis from the RA, chronic anemia, hypothyroidism, sensory processing disorder and finally (because the list is actually longer) something as of yet undiagnosed.
It is how I muddle through hard decisions about exposing the rawness and vulnerability
of living with multiple chronic illnesses to strangers, friends, and coworkers.
Expressing myself is how I dealt with the additional pressure of having had a husband with RA, fibromyalgia, ankylosing spondylitis, and scoliosis. It is also how I got outside myself to be the best mom I could be to the two wonderful kids I had the privilege of raising for over seven years. It has helped me cope with the loss of all of them in separation and divorce this year.
My quest to process my experience and express myself began with blogging for Creaky Joints almost 3 years ago – which gave me a connection, an ability to reach into the darkness and touch another. Then as an artist, my art began morphing into the effort of expressing my pain and experience after a bad fall where I tore ligaments in my foot and ankle. It has helped me face my diseases in the ever-spinning grief cycle of anger, sadness, acceptance, and bartering that so often brings me back into my Self.
My art helps me to reach inward, grab what I find and fling it back into the world. Art is how I figure out the mess of who I am in spite of my disease and because of my disease and beyond my disease. It helps me grab the hand of another who is on the chronic journey, squeeze tightly and hold on as I face the future. It’s a way to reach outside myself when words are minute and fragile and limp in the face of so much fear, sorrow, sadness and pain.
I find power in artists such as Frida Kahlo. She was honest with her body and she was honest with her pain. When she lost a child, she painted it. When she was in so much pain it felt like nails were being driven into her skin…she painted it.
August Renoir developed rheumatoid arthritis when he was 55. His rheumatoid arthritis became severe about 10 years later and he ended up crippled in a wheelchair, with the usual deformity of fingers, hands, feet, legs. Renoir – whose paintings still move us today. Despite the pain and the agonizing life he lived without the treatment options we have today, he went back again and again to his canvas. He had a special canvas and chair made so he could keep on painting. His son would bring him to paint every day to continue working on his pieces. His most famous works of art were done after he developed the disease, including over 250 works of art found around the world in art museums.
In an article that gathered results from studies of art for people across the spectrum – including chronic illness patients, cancer survivors, abuse survivors, and children, the results were clear – there are tangible results in the lives of people who use art as therapy and as a creative expression.
It decreases pain levels, increases the ability to make decisions and helps people process what is happening in their lives. A woman named Grandma Layton, who lived 30 minutes away from where I grew up in Kansas, suffered from chronic depression all her life. She began drawing at age 68 using a method called contour drawing. Through this medium doing self-portraits she was able to work through her depression and become confident and happy for the first time in her life.
I don’t feel sorry for myself and would never ask another to feel sorry for me either. I don’t want my disease to define me. I don’t want YOU to define me by my disease. As patients, we are not just our symptoms and we are not just our pain and we are not just our diseases. As doctors, health care providers, and loved ones it is imperative that you see this. Push us to become creative. Push us into art and crafts and self-expression. Push us to share and feel and know ourselves better. We need it and so do you!
Additional links and information:
A video showing Renoir painting after much damage was done to his body: August Renoir
This piece discusses in detail how Renoir adapted to his life with RA, with no real treatment, but painted anyways: Coping strategies.
This Grandma Layton website shows her different pieces of artwork and talks about her lifelong journey and struggle with mental health. You can even purchase prints of her work if you are interested.
Frida Kahlo information is here. It discusses her work, what she was known for, her style, how she painted her pain, and it shows what her artwork looks like.
Additionally, here are some of the studies I reviewed when preparing for my speech that discuss the power of art as a healing force in the life of patients. But, not just patients – chronic life patients who deal with an ongoing battle for a better quality of life when it comes to their health:
Art is powerful and should move you. I hope this blog has moved you, even motivated you to be creative. Take what you know and what you like to do and just do it! Find inventive and unusual ways to be creative because it will change your life.
It will give you hope.