The woman who sat in the chair opposite me looked understandably frightened. It was her first day there, what would become part of her routine over the next several weeks. Her husband sat beside her holding her hand, stroking her skin gently, reassuringly, as if to say, I am here with you in this and through this. The nurse sat fixed before them, taking her time to explain the whole process of receiving treatment for cancer, what she should expect, how she would feel. Of course, any words can never do justice to the experience of allowing chemicals to flow through your veins in the quest for healing. Chemicals that bring on nausea and hair loss, among other undesirable side effects. She was probably in her 40’s, much too young to face the threat and specter of cancer.
Every ten weeks I make a trip over to the hospital to receive an infusion of Remicade, a treatment for rheumatoid arthritis, an auto-immune illness. It is what is called a disease-modifying drug, rather than an anti-inflammatory. It acts to suppress the part of the immune system they believe is responsible for the attack on joint tissue. Rather than taking a pill every day, the medication is administered by IV drip over a period of two hours every few weeks. I have been making this journey for the last six years and have had RA for a total of fifteen years. Side effects of this drug include decreased resistance to infection, although I have thankfully encountered no negative effects thus far.
The infusion takes place in the Oncology Infusion Center, and so most of the people coming to this place have one form or another of cancer. Each visit I always share my room with two or three others receiving various kinds of chemotherapy treatments. Some of it is clear liquid like my own, sometimes I see people receiving a vibrant red liquid that apparently can burn the skin if it makes contact.
The times I spend there I am filled with gratitude, gratitude for the advances in medication that have taken place since I developed this illness, gratitude for access to comprehensive health insurance and care, gratitude for supportive friends and family. I sit back in my recliner chair under the flourescent lights watching the clear liquid drip through the tube, receiving the gifts it offers my body, relishing the ways it allows me to continue to thrive with greatly diminished pain in my life. This infusion is truly a sacrament for me, a gift of healing grace in my life.
This medication, I have been told, would cost about $36,000 a year if I paid out-of-pocket. I pay only $20 with each visit. Clearly no one receives this medication without prescription coverage. Currently over 45 million people in this country are denied health care coverage. There was a very moving book published about three years ago titled Denied: The Crisis of America’s Uninsured and contains 40 heartbreaking stories of families whose lives were shattered by illness and who were unable to receive care and treatment available because of lack of health care coverage. They chose 40 to represent the 40 million at the time who were uninsured, now the number has risen to over 45 million at last count. This is a complete failure of the imagination.
Before I started receiving this treatment I had such a bad flare I literally couldn’t rise from bed by myself. At the same time our rent was doubled (we were living in San Francisco) and my husband’s job at the church was getting cut back to half-time. I was in graduate school full-time so we had no safety net. Thankfully with time we found another home and another job, and my doctor started me on this medication. It was fairly new at the time. Without it I would surely be living with excruciating pain and severe deformity of my joints. Without her chemo, the woman sitting across from me would likely be risking death. So it was with the stories in the book I mentioned above, so many unable to receive treatment for cancer or other diseases because insurance had been lost through unemployment, or a series of crises, and the tenuous safety net most of us live with had broken.
The landscape of illness, much like the landscape of grief, is a vastly different world than the one most of us inhabit. It is a place where everything we have taken for granted gets turned upside down. It is a place of great rawness and vulnerability. A place where we are forced to face the profound and delicate tenderness of our bodies, often forced to let go of dreams gone unfulfilled, reevaluating our futures, being more grateful for the gifts that health brings, praying that we are able to taste health again. It is a place where we become initiated into a vast sisterhood and brotherhood of tenuousness. To suddenly have the veil of illusion of the seeming permanence of good health lifted can bring tremendous sorrow and heartbreak.
I have been through some very painful times with my illness, I was in my twenties when diagnosed, my mother the only other person I knew with the illness and she had not fared well. I have had my share of great despair, of asking why, of wrestling with God. And I likely will have more. One day I found a photo of myself at the age of two or three in mid-giggle. I loved the innocence of that moment, my own moment of Eden, a time long before I had confronted the terrible suffering of the world, the pain of my own life. It has been on my altar ever since. Not because I long to return to that innocence, but as a witness to the joy that dwells deep inside of me despite all the forces that may conspire to quell it.
Somehow I have avoided bitterness over my losses. Perhaps it is because I see so clearly that none of us can evade loss, none of us can escape mortality. In that awareness comes responsibility to witness to it, to promise to make visible the suffering of others. Why we suffer is of course one of the great questions of all time. It is one I try to wrap myself in at times. But more often than not, I wonder that there is such immense beauty in the world. There are many who act purely out of self-interest, but far more who try their best to live from a place of great love and hunger for connection. Those who won’t deny the suffering of the ones they love, but who promise to dwell in those cracks with them. I am aware that my own marriage vows of “in sickness and in health” have been called upon again and again.
In those moments of grace, when we love fully despite the suffering we have known or the loss we fear, when we laugh in face of the multitude of reasons for crying, when we cry fully and deeply despite those who would want us to keep our suffering silent, when we feel moved to create something of beauty in the midst of ugliness, in the midst of this great Mystery God pulses, in those moments of ordinary grace.
-Christine Valters Paintner
Thanks so much for this honest offering. I have been on disability for eight years for chronic pain…diagnoses are reflex sympathetic dystrophy, fibromyalgia, chronic fatigue, Addison’s Disease and Hashimoto’s Syndrome. I got sick as I was running my stats for my PhD in Child/School Psychology.
I just completed a spiritual direction program last spring and what a joy to be given the accommodations I needed to complete the program! I am wondering about seminary but also am worried about my physical capbilities.
Interestingly, I have met several people (healthy) who are really bitter about my getting disability insurance…kind of like I am getting a free ride. I was bed bound for two years, wheel-chair bound for four and just have been able to be up at varying lengths and have been working on getting a bit of strength and stamina. It has been quite disappointing to me, as I worked long and hard in special education…doing jobs in this area since my teens.
I had an easy time getting it and I don’t know why. I have so many friends who have struggled and have given up in their quest for disability. It was probably the luck of the draw in the people that evaluated me.
It is pretty cute isn’t it? :-)
Thanks so much for this sharing, and especially for the sweet sweet picture. :)
Trish, Thank you for your very warm and tender words and the beautiful blessings you offer me. Love to you, Christine
Wendy, I do enjoy collaborative work, so perhaps down the road that might be worth exploring. Thanks for sharing the invitation to ponder. Blessings on this Sabbath day, Christine
I felt the same invalidation from disability, it made me curl up inside and turn away honestly, it was horrible. My life as I’d known it was gone and deeply grieved for, and then to make pour salt in the wound the invalidion of all that was added there. I’m sure you understand having been there yourself. This is something I would love to write about someday, and the thought just occured to me of co-writing? Not now with full hands, but perhaps in the future? Just a thought anyway…
I have been out of the blogosphere most of this week, and am just catching up on your (as always) insightful and poignant words. I am left with deep silence and gratitude and spaciousness. And I can simply say thank you.
As it always the case, we find in the world around us, and therefore in the blogs we read, what we are exploring within our own lives. This has been a tender week for me as I journey with my son’s awakening from innocence (perhaps spoken another way it might be called a “going-to-sleep” or turning away from that which is inherent), which is accompanied by my painful revisitations to my own childhood. Juxtaposed against that are women surrounding me (clients, students, friends) who are asking questions about conditioning and shame and loss of innocence — and longing to re-awaken a child-like innocence and essential nature.
Though it is nearly a passing blip in the midst of such deep and grace-infuesd words, your mention of the sweet, mid-giggling, toddler-aged you was the most poignant moment in the midst of your posting. I can tell already, this will be showing up in more detail on my own blog! :-)
Bless you. Bless your body. Bless the bodies of all who journey with chronic pain and those who have bodies that feel regularly strong and able and pain-free. Bless all the children in the world who are mid-giggle. And all the adults, too.
P.S. Cathleen, it’s wonderful to “see” you here! I love this running into you out and about in the internet ethers. Though it’s sure not the same as living together in the same state.
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