Years ago, at a difficult point in my life physically and emotionally, I had the opportunity to legally change my last name. I chose the name, Walker, because my illness made walking very difficult, yet I love to do it; so walking is something I will always struggle and fight to do. I chose this picture to represent this page because it is a beautiful garden in Kauai with a deep personal meaning to me, largely because I love to walk here.
I became very ill during the summer of 1992, between my Junior and Senior years in College. Because of my religious upbringing, I had no real experience with medicine or how to take care of a serious illness, and had no personal physician. I was isolated, by this time estranged from my sister, and living with my father, who chose not to see what was happening to me. I suffered from daily fevers, exhaustion and rashes, and, eventually, crippling joint and muscle pain. I was unable to work or go out, few friends visited, and I spent my time reading, watching TV, and wondering what was happening to me.
After coming close to death, a friend finally forced me to see a doctor and after months of tests, I was diagnosed with Rheumatoid Arthritis. RA would affect my life and decisions in every way possible from this time on. My mother was dead and my father essentially refused to help me because I wouldn’t go back to his church so I continued on alone with Western medicine, taking the harsh drugs and researching the illness as much as possible. I took care of myself, in a way, a process that was hampered by my stoic nature, inability to accurately report pain and dysfunction to physicians and ask for appropriate pain medication, and difficulty asking for help.
I still have trouble admitting to my doctors that I am in pain and needing help. It took me years, and a lot of therapy, to be able to ask for pain medication for my pain – so sure was I that the doctor would be my father, and deny there was enough wrong with me to warrant them. It has taken twenty years of weekly work to uncover the shame and guilt, to recover that child who was told not to need, and heal. But it still runs deep.
My RA has affected every single aspect of my life since, from career choices and how much I can do in a day, to travel and housing, and even to relationships. Although my illness is now in remission and well-controlled, I still have some pain from osteoarthritis and structural damage, and some fatigue. I am feeling better than ever, however, and blessed at the improvements and healing I’ve seen lately.
I firmly believe that what has allowed me to have any kind of life and keep my self and body strong, is my dedication to exercise; nutritional healing as provided by my friend Dr. Steve Polenz (including going off wheat altogether); movement therapy like Pilates and Gyrotonic® movement; acupuncture by the amazing Manu Saxena; and the somatic therapy, SPRe®, that I have participated in for the last twenty years.
While I will never be “normal,” I do believe that others with chronic illnesses can benefit from knowing about actions I have taken, in order to potentially make their lives better and more comfortable. I also have a lot to say about the developmental trauma, conditions and events that can lead to disease; somatic exploration; chronic pain; and the serious problems with our medical system, pharmaceuticals, and government.
Books and Sites:
Scared Sick, The Role of Childhood Trauma in Adult Disease – Robin Karr Morse.
The Molecules of Emotion – Candace Pert.
The Body Keeps the Score – Bessel Van Der Kolk, MD
The Pain Chronicles – Melanie Thernstrom
When the Body Says No – Gabor Mate, MD
How to be Sick – Toni Bernhard
The Chronic Illness Experience – Cheri Register
In the Kingdom of the Sick – Laurie Edwards
Out of Joint – Mary Felstiner
A Resilient Life – Kat Elton, OTR