inadequate and unprepared to make a reasonable decision about drug options. I went home tired and deflated, and wanted to throw in the towel and not do another blessed thing toward trying to feel better.
A week later, I saw another neurologist and left the office with a weight lifted off my shoulders. He took the time I needed and gave me a much clearer picture of meds than I’ve had up until now; what they can and cannot accomplish. He doesn’t see any viable options to Betaseron right now, which of course is not what I’d like to hear. But, at least he took me through some of his thought processes about my diagnosis, asked me some questions and talked about why it seems we’re out of options for now. All this to say that I felt free to make the decision to quit meds, at least for a time, and walked away with peace of mind. Thank you Jesus, Prince of Peace.
Love,
Colleen
Another Long Answer
August 2007
In her essay, ‘On Being Ill’, Virginia Woolf wrote:
English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. The merest schoolgirl, when she falls in love, has Shakespeare and Keats to speak for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry . . . Pain, in its fracturing of an individual self—that is, of relationships between the self’s different aspects—also fractures that person’s relationships to others just as the impossibility of clearly communicating the experience creates a gulf between the sufferer and others . . . difficulty describing pain adds insult to the injury, yet it seems unavoidable . . . pain’s resistance to language is not simply one of its incidental or accidental attributes, but is essential to what it is.4
Lately I’ve been reading beneficial materials about suffering and living with chronic illness written by authors who view pain as a whole-person event, with physical, emotional, psychological, and spiritual dimensions. The words above are from Kristen Swenson’s book Living Through Pain: Psalms and the Search for Wholeness, and brought me much relief. I have long been frustrated with my inability to communicate—even to those closest to me—the nature and extent of my illness; the physical symptoms of my disease as well as psychological, emotional, and spiritual aspects of my illness. So I was glad to read that pain is inherently resistant to language, and that there exists for sufferers an inherent sense of isolation.
The loneliness and isolation that I feel are not crushing, but they are constant. I became aware of feeling isolated and alone shortly after my neurological symptoms appeared. I remember reading at the time, Donald Miller’s Searching for God Knows What; a book that gave me just what I needed—a picture of heaven to die for. It was one of the things God used to fight the fear that festered in my heart during that Advent season. Miller’s book also showed me Jesus in a fresh light, and the realization grew that as much as I love Len, and can’t imagine what I would do without him, when it boils right down to it, it’s just me and Jesus.
In the darkest hours Len will not be my comfort. Though he will want to be, and would sacrifice much for me, he quite simply will be unable to because he is not Jesus, and only Jesus will do. It’s quite a simple thing really, and yet the deeper it seeps into my soul the more staggering it becomes—Jesus and me. It frees me to face aloneness without fear; to face uncertainty without fear, and sometimes even to face fear without fear. It isn’t that I am never afraid. At times I am overwhelmed by it. But it doesn’t defeat me. A permeating peace keeps the fear in check. God is my defender, “though we stumble, we shall not fall headlong, for the LORD holds us by the hand.” (Ps 37:24)
People around you have no experience that allows them to understand what it means to remain sickly with an invisible disability year in and year out. Invisible disabilities are worse than visible ones. The suffering is masked by a healthy appearance. They are not in wheelchairs and do not use canes. Yet their pain and debility is real and chronic. They have ‘invisible disabilities’. It may be the soul-sapping fatigue, environmental sensitivity, and chronic pain of fibromyalgia, or lupus, or lyme disease, or multiple sclerosis. These souls suffer not only from their diseases, but often from the uninformed reactions of others . . . People with invisible disabilities suffer twice.5
Again, I was relieved to read words that echoed another important part of my illness; I appear to be well when I feel like hell. The title of Boyd’s book caught my attention, as I had written those words almost verbatim in a May journal entry: “I am afraid. I don’t know if I can do this. I don’t think I can do this for a very long time, be sick and live well. It seems I’m not as scared to die these days as I am to live, ‘dying by inches.’ How many inches in a mile? And what if there are still many miles to go? I don’t know that I can do it, don’t know that I want to do it. Don’t know that I can do it well. Christ help me, I am afraid.”
At the end of April, I enjoyed a book called Sacred Rhythms by Christine Sine. She mentioned a friend of hers who was ‘dying by inches’ of MS. This didn’t sit well with me and for a time I suffered what I’ll call a low-grade infection of fear, which was compounded by a return of the general malaise that has been my fleeting companion on and off for about four years now; a sort of restlessness punctuated by sharp uncertainties about the fabric of my faith, a nebulous tension that has found sporadic resolution through different channels of grace.
Within a week of reading the words in Sine’s book, I was rescued from an escalating fear by St. Paul’s words in 2 Cor 4:16–18:
So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal.
These long familiar words of Paul’s became vitally fresh for me in May and were the ideal backdrop for Dallas Willard’s insights in The Divine Conspiracy, about God’s kingdom among us.
At times, it seems my illness is sharpening my longing and honing my sensitivity to better see and hear the kingdom among us. My inner self is being ‘renewed’ and I am experiencing healing. When people ask how I’m doing I’m quick to say that though God is not healing me physically (at least not that I can see) he is healing me in other more significant dimensions. I found these thoughts echoed in Swenson’s book. In writing about the nature of pain Swenson looks to the psalms as a model for a holistic suffering, “I distinguish between curing and healing. . . . To be cured, then, is in a sense to return to a former state of being. Healing, on the other hand, happens in any and all acts of making whole. Healing involves the integration of all aspects of a person - physical, psychological, spiritual, and social within that person’s present context.”6
I have experienced God’s healing touch since becoming ill, and isn’t that just like him? The low are lifted, the poor are rich, the foolish are wise—be ill to get well. Scriptural juxtapositions that become a voice, a word to reveal Truth in its entirety. Since Advent 2004 the Lord has been good to show me what a mysterious thing suffering is in his hands. There are people who pray for me daily. They pray for physical healing, among other things, and it seems the ‘other things’ are what God is tending to. I can honestly say that most days I’m good with that, and if I could turn the clock back and have my physical health restored to what it was in November 2004, I wouldn’t do it if it meant ‘returning’ what I have ‘gained’ since then. There is a dimension now to my life that wasn’t there before— or more likely I have simply become aware of something that has been there all along.
My
