I suppose another reason I’ve not been communicating well about how I’m doing is because I want to be normal, so I do my best to look and act normal. That being said however, I also don’t want to give the impression—at least not to everybody— that everything is just fine. I sense that I need some people to know, as much as is possible, what life is like for me and Len and the kids, to know, if possible, what it’s like to be in my skin. That’s why I’m writing this missive, to give to people who ask me how things are going, people to whom I don’t want to give a simple ‘short answer’.
I have often turned for perspective to John Piper’s book, The Misery of Job and the Mercy of God. In the preface Piper writes:
It is a great sadness when sufferers seek relief by sparing God his sovereignty over pain. The sadness is that this undercuts the very hope it aims to create . . ..whatever satan’s liberty in unleashing calamity upon us, God never drops the leash that binds his neck . . . pain and loss are bitter providences. Who has lived long in this world of woe without weeping, sometimes until the head throbs and there are no more tears . . ..but o, the folly of trying to lighten the ship of suffering by throwing God’s governance overboard. The very thing the tilting ship needs in the storm is the ballast of God’s good sovereignty, not the unburdening of deep and precious truth. What makes the crush of calamity sufferable is not that God shares our shock, but that his bitter providences are laden with the bounty of love.1
Some things that I am grateful for:
• The countless prayers said for me, by people I know and by people I don’t know.
• The MS did not manifest itself clinically until fairly late in my life. I think of how much more difficult this path would have been ten years ago, when our children would have been that much younger and more physically dependant on us.
• Because substitute teaching has not been feasible for me this year, I have been at home most of the time—something I very much enjoy.
• I am still running, three or four times a week; same route, same pace. I’m stuck in a rut, but it’s a lovely loop and I run it in all seasons. I run solo and there’s lots of “elbow space” along the way so bumping into things isn’t really an issue when I’m running. I bumped into a parked car once, but it hasn’t happened twice! I wear sunglasses and often run with one or both eyes partially closed. I’m usually running mid-morning, when traffic is low. I’m so grateful for my aerobic capacity and the ability to run outside. It’s an important ‘release’ for me, and a wonderful way to think and pray.
• Being at home gives me opportunity to read. I read for short periods of time and during spring and summer I thoroughly enjoyed The No. 1 Ladies’ Detective Agency series by Alexander McCall-Smith, and more recently Kite Runner. Another book I had the time to read slowly and enjoy was The Pleasures of God by John Piper, reminding me again of the supremacy of God in all things, and the delight that I am to him. I am currently reading Richard Foster’s book on prayer, Finding the Heart’s True Home and Sigurd Olson’s The Lonely Land, a true tale of white-water adventure by canoe down the Churchill River.
• I also get to spend much time at home in solitude and silence, a topic that came up frequently in November during a sermon series on ‘Sabbath rest.’ I enjoyed reading Henri Nouwen’s book, The Way of the Heart, perhaps because I felt it ‘validated’ my new ‘monastic’ lifestyle: “Intuitively, we know that it is important to spend time in Solitude. We even start looking forward to this strange period of uselessness.”2
Before I sign off, some thoughts I pondered during Advent; John says something that touches us deeply at the distance of the centuries. In unparalleled words he writes with rousing witness, “We declare to you what was from the beginning, what we have heard, what we have seen with our eyes, what we have looked at and touched with our hands, concerning the word of life.” (1 John 1:1) How existential is this beautiful phrase of John’s, “ . . . what we have looked at and touched with our hands . . .” Yes, Jesus, God on earth, was touched by human beings, handled, gazed on. God is made human in Christ. “God makes himself present to us with such a special presence, such an obvious presence, as to overthrow all the complicated calculations made about him in the past. If Jesus is truly God, everything is clear; if I cannot believe this, everything darkens again.”3
“Let us therefore approach the throne of grace with boldness, so that we may receive mercy and find grace to help in time of need.” (Heb 4:16)
Thank-you for every prayer said boldly on my behalf; each one is important, and cherished.
Love,
Colleen
1. Piper, The Misery of Job and the Mercy of God, 8–9.
2. Foster and Smith, Devotional Classics, 96.
3. Job and Shawchuck, A Guide to Prayer for All Who Seek God, 28.
Neurologists
March 2007
Ihave seen two neurologists in the last three weeks. My first appointment was with my interim neurologist at the MS Clinic. This visit was a downer for me. I guess my expectations had been too high. The doctor was obviously expecting a quick, straightforward follow-up appointment, not a woman with all sorts of questions about her diagnosis and the efficacy of her medication. I was hoping for some advice, counsel, even an opinion. Instead, he seemed hesitant to give comment about anything. He briefly went over the results from the MRI I had at the end of January, but couldn’t tell me anything except that the MRI doesn’t indicate whether the Betaseron has slowed the course of disease at all. I left feeling completely 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