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,