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.
