October 02 2005 (12:36:00) US/Pacific
I want to invite you to visit my blog. It is a daily journal of my struggles with a little known illness, fibromyalgia/Chronic Fatigue Syndrome (CFS), which has, for the most part, especially in recent months, taken me away from activism and confined me to my bed. I have shared perhaps pieced of what I am going to share here, with some of you, but for the most part, this is a bit of a coming out. I should include in this introduction, for those who don’t know, that I am a single mother with a child who also has significant health issues. We live in the isolation of what I call, quite seriously, the single mother ghetto, the way this society isolates women and children.
There is much shame and isolation around illness and disability in our society. More difficult than the disability, is the marginalization that has come with it. After a relatively minor car accident last April, which brought about an especially severe relapse, I had to retreat from most of my activity, including my activism, which very much defines for me, who I am. Having been reduced to being a sick woman in a bed, I have been called forth to make it my activism. So I have started this blog. Bringing noise to the silence, I am reminded of that quote by Audre Lorde: “My silence had not protected me. Your silence will not protect you.” Silence seems to protect. It protects me from the cruel statements even well meaning people make. It protects me from harsh judgement. It protects me, to the extent that I can hide my disability, from the discrimination that comes with such a condition. But in silence there is complicity to the isolation. In isolation and silence there is no transformation.
I have named my blog, “In Bed with Frida Kahlo.” It’s a playful title, toying with both Frida’s prolific choice of intimate partners and her infirmity. Frida, a complicated woman who was an artist and an activists, having endured both polio and a devastating trolley accident, was confined to her bed for much of her life. She suffered great loneliness and despair which she chronicled in her diary and her paintings. My favorite quote of hers is “I must fight with all my strength so that the little positive things that my health allows me to do might be pointed toward helping the revolution. The only real reason for living.” It is often quoted. Less quoted are the words that preceded it:
“I’ve been sick for a year now…. I don’t feel any pain. Only this…bloody tiredness, and naturally, quite often despair…I feel uneasy about my painting. Above all I want to transform it into something useful. for the Communist revolutionary movement, since up to now I have only painted the earnest portrayal of myself. But I’m very far from work that could serve the Party.”
She doubts the value of her art because it is so personal, and yet, it is through her paintings that we get to know her ideas, her values, her politics. This quote speaks to the fact that we never really know the impact we have on the world, –harder yet to know from the isolation and confines of bed. Frida’s story resonates with me, though I live my life very differently than she did. I don’t drink, I eat healthy, and for the most part, organic foods, Aside from occasional hits of shesha,(flavored tobacco, from a hooka pipe) I don’t smoke. I believe I have better taste in men, and I am not nearly as sexually prolific as she was. But we share art, socialism, and illness, and her story has helped me understand my own; to put it in a greater social and political context. She died when she was only a few months older than I am now, many suspect by suicide, certainly by overdose of morphine to kill the pain that she lived with most of her life. I am determined to out live her by many years.
The writer’s life is an open book. I hope to provide in this blog, an honest account of life with illness, hoping, in my outburst to bring something to those who similarly suffer and to add, from my sickbed, to the body politic. I do, as a writer, have very few secrets, but I am very careful with the details I provide of those whose lives touch mine. Forgive me when I am vague. It is not myself I am protecting, but the privacy of others. The decision to tell their story should be theirs. Not mine.
Fibromyalgia/CFS strikes mostly women, seems to be neurological and immunological in origin, has no known marker or pathogens, is not contagious, and receives little research money. Symptoms include fatigue, pain, cognitive and memory difficulties, gastrointestinal problems, chemical sensitivity and depression. The severity comes and goes. Most of us with the condition are deceptively healthy looking. We have periods of greater activity and long periods of relapse. About two years ago I managed to hike 6 miles on my favorite trail in the San Gabriel mountains. It took me four hours instead of three, I didn’t hike alone, as I would have before I had become ill, and it took me days to recuperate, but I did it. Today I would have difficulty walking around the block. And yet I don’t doubt that I will find myself on a hiking trail sometime within the next year, and then back in bed once again some time after that.
Before I was ill, I was a full time classroom teacher in Los Angeles in a job I had held for 18 years. I also coordinated two educational programs and was involved in my union. Since the illness, I have had great trouble finding paying work. While some jobs have proven difficult for me to maintain because of the condition, more distressing are the number of requests that I work in a volunteer capacity to provide skills I am capable of meeting, from people who are more than willing to pay able bodied people to provide the same work. The constant reminders that my work has no monetary value add to my sense of marginalization and isolation. It’s not just vanity. I need the money. Due to the diligent work of teachers unions, I, like other disabled teachers, receive a full pension, half a teacher’s salary. This is much better than social security disability benefits, which would put me within the established definition of poverty. I also have health care coverage from my previous employment, but unfortunately, most of the health care modalities that help me with this condition, are not included in the coverage. There is very little that traditional Western medicine can do to help with fibromyalgia/CFS. While I could, in my simplicity, live on my pension, were I not sick, the added costs of my care, keep me in constant need of resources.
In my efforts to bring meaning and healing to my life, I struggle with the isolation that comes not only with the illness, but the marginalization that accompanies it, the inability of the social fabric to provide support, community, healing: our busy lives, the distance between intimates, the pithy values of the capitalist system that blame the victim, that sees all problems as individual and not collective, and the overall lack of accessible healthcare. One of the most isolating and marginalizing factors is what I call spiritual fascism. a bit of “survival of the fittest” that has entered into our daily lexicon of illness. “What did you do to create this?” “Can’t you just psyche yourself up and snap out of it?” “If you were more spiritual…” “When I’m sick I just meditate and it goes away.” “It’s god’s punishment.”“What did you do in a past life to bring this on yourself?” My favorite one: “Why did you choose this illness?” From the Christian right to New Age spirituality, the ideology that we somehow create our own suffering, that we can determine our own reality, I feel is rooted in American individualism and the break down of any understanding of collective responsibility and mutual aid, that illness might be a collective concern, that we don’t create our own reality, but rather, contribute to the collective reality, that racism, sexism, greed, violence and illness are real factors, beyond our spiritual imagination, that they are material and require a deep and significant response.
There is much indication that this illness is caused by a combination of trauma and environmental toxins. To that extent it is very much a disease of our times, caused, not by the individual, but by our social structure, the daily traumas of the violence of capitalism, the bombardment of dangerous toxins, in a society that puts greater value on profit, than on human need.
A wise rabbi once said “ The history of all hitherto existing societies is the history of class struggle.” (Actually that was Karl Marx, but what was he, if not a wise rabbi?) And my history is the struggle not only with the limitations of this condition, but the limitations and marginalization imposed by a corrupt civilization that has abandoned mutual aid for blame and guilt.
Since the accident I have had to pare down my activism. I have found myself unable to get out of the house much, often unable even to sit up in bed. I have not been able to continue projects I had started, and have had to reinvent myself again, as I have had to do repeatedly with this condition. Having been reduced to being a sick woman in a bed, I have decided to embrace it, to explore it, to bring my activism to it, to recognize my personal struggle as part of the universal struggle for human rights, dignity, health care, community. I cannot believe my isolation and loneliness is unique. I understand it to be part of a dialectic that must affect many people, all alone, all struggling for access, community, for health care.
I am beginning to come out of the relapse and find it is easier, in hindsight to appreciate the depth of the relapse, to forgive myself the despair and anxiety it has caused, to timidly look forward to the possibility of finding work and hopefully meeting my needs. The more severe neurological symptoms have abated. I can walk a bit further and use a cane or a walker less and less. I have fewer days where I can’t sit up in bed. I can write again. I am very grateful to Dr. Michael Hubka, an extraordinary chiropractor, Dr. Amy Swei, my acupuncturist, Greta Craddolf, my massage therapist, Dr. Kate Bourne, my therapist, Dr. Joseph Haraszti, my psychiatrist and pharmachologist and Guadalupe Medrano, my cafregive (who is wonderful, and looking for more work). My son, Leon and my partner, Andy Griggs, have been enormous supports, as have my mother and several close friends (Sonali, Jim, Stephanie, Dima, Huda, Ban, John, Hussam, Linda, Darlene, Shraga, Sam, Dorothy, Sari, Tannery, Mary, Ariela, Linda, Bob, Alvaro, Mansoor, Steve, Ramaa– I hope I didn’t leave anyone out!) I must also acknowledge that my auto insurance company has been extraordinary in this whole process. Finally, I want to thank the Human Rights Committee of United Teachers Los Angeles for their gracious support and accommodation, which has allowed me increased activism and participation. That so many activists jump in to do what I cannot, allows me to give what I can. Perhaps the hardest part of this whole ordeal is that I am not short of vision, but the vehicle to bring it to fruition.
Frida has been accused of painting self-portraits to get attention, an unfair accusation from those who can find community by leaving their homes. We all need attention, communion. I am sure attention is one of my motives for this endeavor, but more importantly is the hope that I can create connection, hope, clarity, vision to those who suffer, as well as those who go about their lives, caught up in the fight for survival, the treadmill of life.
You can find my blog at http://inbedwithfridakahlo.blogsource.com/
Currently it includes my bio and a few posts. You can respond to my posts and subscribe to the blog. In the future it will include photos and drawings, chronicles of the daily indignities of disability, insights, wish lists, poetry, despair and hope. Most posts will be brief annecdotes and insights, much shorter than this introductory rant.
Thank you for permitting me this indulgence.
Peace with justice, and above all else,
Baldwin Park, CA
©2005 Emma Rosenthal All Rights Reserved. Permission to post or forward in entirety including the copyright.