Читать книгу Endearing Pain - Colleen Peters - Страница 9

January 2007

Iwas diagnosed with MS in mid-June 2006. The results from a spinal tap I had in January 2006 provided the missing piece of the ‘puzzle’ that my neurologist needed to finally feel confident in making a diagnosis of MS. I haven’t looked like a ‘classic’ MS case right from the beginning, which is why I had to undergo an unorthodox brain biopsy three years ago following inconclusive CT scans and MRI.

In the middle of July, I began taking a medication called Betaseron—an interferon drug I inject every other day. During the first few months, the side effects (mainly flu-like symptoms) were manageable with Tylenol or Ibuprofen and thankfully haven’t been a huge issue for me. However, Betaseron hasn’t shown any benefits either, and a scheduled MRI later in January will show what course the disease has taken since my last MRI a year ago.

Regardless of what the MRI reveals, my symptoms have become worse since starting on the Betaseron, and disease progression has been insidious these last three years. The rate of decline varies slightly, but the deterioration has been very apparent to me—at times from month to month, sometimes from week to week—and seems to have accelerated since starting the Betaseron six months ago.

To try and tell you what ‘feeling worse’ means is very difficult. When people kindly ask in passing how I’m doing, I usually give them the ‘short answer’ and say something like, “Okay” or, “could be worse,” or I deflect their question by talking about something our kids or our family has recently done; all in an attempt to dodge the question, which is so difficult to answer. People often tell me that I look good, which is very kind of them, but it’s also one of the truly frustrating things about this disease. As of yet, there is no glaring deformity or disability to indicate that anything is significantly ‘wrong’ with me. But something crucial has been crushed.

My symptoms:

• Balance issues; I constantly feel like I’m on a floating dock, and often lean on things for stability.

• My spatial awareness and depth perception are messed up, so I frequently bump into or break things. I often feel crowded and negotiating my way through crowds is a challenge.

• Every step requires thought, and I increasingly avoid crowded places like malls, parties and the church foyer on Sunday.

• Deteriorating eye/hand coordination.

• Numbness and pain in my left hand, arm, shoulder, neck and face— especially in and around my eye.

• Increasing weakness in my left hand, arm and shoulder (My neurologist seemed quite concerned about this.)

• Vision difficulties; it seems like both eyes aren’t always focusing on the same thing, like my brain can’t decide what to focus on, and my eyes have become photosensitive. Both of these things cause eye pain and headaches.

• Difficulty processing excess sensory stimulation; so again crowds are an issue and Saturdays are sometimes difficult because it can feel overwhelming when all six of us are at home for the whole day.

• Multi-tasking—something I used to be quite good at—is becoming a thing of the past. Frustration sets in if I try to give my attention to more than one thing at a time.

• Headaches; constant sore neck and eyes to varying degrees, most severely in the late afternoon and evening. I’ve been unable to equalize the pressure in my ears for almost a year now and have constant pain in my temples, cheekbones, and ears.

• Tightness in my throat muscles for three or four months now; this may or may not be related to MS. My sleep is disturbed; usually not too badly at the start of the night, but I wake most mornings around four or five.

• I sense challenges in some of my cognitive functions like concentration and memory, but nothing too serious yet.

Just about all of these symptoms have been with me to some degree since the middle of November 2004; gradually escalating in intensity since then with no sign at all of a remission. I distinctly remember the day, shortly after my return from my brother’s wedding in the Cayman Islands, when I felt some tingling in the little finger of my left hand. Within days, the imbalance began and since then every day has been the same or worse in terms of how I feel the disease. It has become second nature to me, and I really don’t remember how I felt before all of this.

There are two kinds of MS: relapsing/remitting MS (RRMS), and progressive MS. (PMS). RRMS afflicts almost ninety percent of people with MS, and someone who has it told me that it’s the kind you would want to have, if you had to have MS. In June, I was tentatively diagnosed with RRMS in order to secure EDS (exceptional drug status) so I could start on medication. But as time passes, it appears likely that I have progressive MS, which is more difficult to treat. I’m scheduled for an MRI later in January, and then an appointment in mid-February with an interim neurologist who will treat me until a replacement is found for my current neurologist.

I imagine that in February we’ll discuss what my options might be in the event that I’m still not responding favorably to Betaseron. Of course, I continue to hope that remission is just around the corner. If or when it becomes evident that I have progressive MS, I suppose I will want to ask many questions about speed of progression, and what I can expect down the road. But I haven’t really wanted to think about that a whole lot, so I haven’t.

Life is certainly different now, but life is good, because God is good. The Psalm I’m reading this week is 146, “Praise the LORD! Praise the LORD, O my soul! I will praise the LORD as long as I live; I will sing praises to my God all my life long . . . Happy are those whose help is the God of Jacob, whose hope is in the LORD their God.” (Ps 146: 1–2, 5 NRSV)

If I lived a hermit’s life in a desert somewhere my health issues might be easier to handle in some ways, but I live in a house with five other people (thank God!) and this disease affects us all. God is graciously helping us all to make adjustments. Living with a chronic illness wears me down and renders me intolerant to many things. I am often someone I wouldn’t want to live with if I had the choice; an impatient, demanding and at times, belligerent person who sometimes feels she deserves a break because she has a personal challenge to live with. I don’t like this person and would like things to be different, but this is where I am—where we are—and truth be told, I don’t want to be anywhere else. God is faithful, even though I am not. His promises are sure, so I do not despair. “Whom have I in heaven but you? And there is nothing on earth that I desire other than you. My flesh and my heart may fail, but God is the strength of my heart and my portion for ever.” (Ps 73:25–26)

So there you have it; although the result is somewhat vague, this is my attempt to answer the question, “So Colleen, how are you doing?”—a question asked by kind, compassionate people with whom God has graced my life. It is a difficult question for me because there are so many facets to the answer. I realized recently that I have not been communicating very well about how I’m doing, mostly because I don’t want to complain (except to my husband, Len—what would I do without him?)

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.