Читать книгу Endearing Pain - Colleen Peters - Страница 11

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 sensitivity to the pain of others is heightened, and my understanding—head and heart—of God’s absolute sovereignty has deepened, despite my questions about the authenticity of my faith . . . actually because of the questing.

I am learning a new appreciation for each moment, and how to be present to the present. I have grown accustomed to the gift of silence and solitude that my illness affords me. It allows me the space and time to assuage the restlessness and angst I alluded to earlier. In addressing the hermeneutics of pain, Swenson touches on some things that may reflect something of my malaise:

Perhaps no other human experience so presses us for explanation, so throws us back on metaphysical questions of meaning and purpose as does pain. Furthermore, pain’s disruptive nature and the difficulties defining and communicating it call into question one’s understanding of one’s very self. Pain challenges, chastises, and changes a person . . . Pain calls into question earlier ideas about meaning and demands their reassessment.7

I’m so grateful that I’ve had someone to turn to as I’ve wrestled with my ‘dis-ease’. “LORD to whom can we go? You have the words of eternal life.” (John 6:68) And God comes to my rescue as often as need be, tenderly transforming these times of questing into gracious agents of healing. At the end of April, I emailed a friend who wanted to know what my joys and frustrations have been. Many things, I told him, bring me happiness. Joy I shall reserve to mean that moment; scarce and sweet and always a surprise, an enormous bliss, when heaven touches earth right where I am, and I know “All shall be well, and all shall be well, and all manner of things shall be well.”8 (Julian of Norwich) Most days are rich with happiness. There are days, or parts of days, when happiness seems far away, but there is a constant and pervasive peace that remains even when the happiness leaves. “Whom have I in heaven but you? And there is nothing on earth that I desire other than you.” (Ps 73:25) Some of my ‘happinesses’ are:

• My husband, my children, conversations with friends both old and new.

• Time to pray in more reflective, contemplative ways that are new to me.

• Books. Although I can’t read for long periods of time, I read for short periods and have time to reflect.

• Running. I run three times a week, same route, same pace, and my route allows for lots of space, which I need.

• A recent camping trip to Rushing River with old friends, and the anticipation of our time there again next summer.

All of these things bring me huge collective happiness. I want to embrace, not simply endure, whatever suffering there is along the path I am on, and most days I am able to do that. Having said that, I must also tell you that there are days when I want to scream Frodo’s words from The Lord of the Rings, “I wish the ring had never come to me. I wish none of this had happened.” 9And sometimes I do scream them, and God hears me and knows what I can bear and in his mercy, allows no more. I see much wisdom in Gandalf’s reply to Frodo, “So do all who live to see such times. But that is not for them to decide. All you have to decide is what to do with the time that is given to you.”10

I’ll spend just a few words on the physical aspect of my health. I have been off of the Betaseron injections for six months now with no positive effect. The progression of disease as I perceive it continues as it did during the seven months I was on the meds, as it did during the 20 months prior to starting the meds. My neurologist at the MS Clinic recently conceded that I do in fact have progressive MS, as opposed to relapsing-remitting MS. All this to say that the arsenal of pharmaceuticals used to treat progressive MS has been exhausted. Betaseron was it. I plan to start taking some glyco-nutrients I’ve heard good reports about. In the meantime, we continue to adjust to increasing limitations on my physical abilities.

We are in the process of moving. We bought a home in Riverview in June and sold our house last week. The kids have been fabulous in helping Len carry boxes and furniture to the van the last few nights. My vestibular challenges don’t allow me to do that sort of thing very well anymore. I cut and burn myself, especially my left hand and arm, more frequently as the numbness there deepens. Weakness has also become an issue on my left side and so I rarely use my left hand. I frequently experience stiffness and cramping in my left arm and hand. Tingling and numbness are now constant in my feet and lower legs and, to a lesser degree, in my right hand and arm as well.

The majority of my face is now numb to varying degrees, so if I have food on my face, please tell me! Headaches/neck aches are almost daily, and include eye pain, pressure pain in my ears and temporo-mandibular joints, constricted throat muscles and difficulty swallowing. Vision problems exacerbate my diminished spatial awareness, depth perception, and speed and time–lapse perception. I think what I have the most difficulty with is my increasing inability to concentrate and focus—my ‘addled’ brain. Deductive reasoning happens at a much slower rate than it used to (no wisecracks here please!) Let’s just say that my inherent ‘keen sense of the obvious’ isn’t so keen any more! I find this cognitive vulnerability much more difficult to accept than any of the physical challenges I face.

I began this letter with some thoughts about pain’s resistance to language, and find myself back on that topic as I near the end. In Swenson’s words, “It is imperative then not only that the person in pain attempt to communicate her experience, but also that others work to understand it. . . . and such witness does not depend on perfectly comprehending the full nature of another’s pain.”11

And so I say thank you, to each one of you who reads this. Your willingness to ask how I’m doing and to hear my answers; the shorter ones I give when we speak, and the longer more exhaustive written ones such as this, means more than you know and play a crucial part in my healing process.

I was recently reminded of how an oyster reacts to a painful grain of sand that gets inside its shell. It responds by wrapping translucent layers around the grain of sand until something of great value is formed. I think an analogy of sorts can be made to the pain in peoples’ lives. Suffering is indeed a mysterious thing in the hands of God, and the results of suffering can be something of great value. I believe this is not only a possibility in God’s kingdom among us, but a definitive dimension of it. I have confidence in a benevolent God, whose love for me knows no bounds and who will continue to allow the transforming effect of chronic illness to draw me closer to him and to produce something of great value. Keeping my eyes on ‘what is not seen’ allows me to say, “It is well with my soul.”

I’ll leave you with some words from Psalm 18 that have been a solace for me this week:

The LORD is my rock, my fortress, and my deliverer, my God, my rock in whom I take refuge, my shield, and the horn of my salvation, my stronghold . . . He brought me out into a broad place; he delivered me, because he delighted in me . . . For who is God except the LORD?” (Ps 18:2, 19, 31a)

Love,

Colleen

4. Swenson, Living Through Pain, 40.

5. Boyd, Being Sick Well, 210, 13.

6. Swenson, 12–13.

7. Ibid., 47.

8. Foster and Smith, Devotional Classics, 68.

9. Jackson, “The Fellowship of the Ring,” DVD.

10. Tolkien, The Fellowship of the Ring, 50.

11. Swenson, 42–43.