Chronic Migraine, Coping, Reader Stories

Grace Beyond All Imagining

Inner Dorothy‘s Sue explores her life with chronic daily headache in this guest post. A heartwarming, insightful writer, Sue’s compassion and zest for life is an example for us all. You can learn a lot about Sue in her self-described occupation: Preacher, Peddler of Hope, Frustrated Untangler of Theological Knots and Mysteries, Lady-in-Waiting for Two Vastly Overindulged Felines.

In September 2005, I woke up one morning with a headache. “That’s odd,” I thought. I wasn’t prone to headaches at all and thought I might be coming down with something. Days later I noticed it was still there, a hot piercing pain through my temple that seemed to land right behind my eye.

It’s still there.

I am a minister in the United Church of Canada, serving a wonderfully progressive and faithful congregation. I love my work. Like any other vocation, it comes with particular stressors which I have learned to navigate well. However, the pain of chronic daily headache has made it increasingly difficult to cope with the everyday ups and downs of this work that I so enjoy.

I toughed it out at the church until April 2008. Then I hit the wall. For almost three years I had pushed back against the pain insisting that nothing, absolutely nothing, was going to get in the way of the ministry I had sacrificed so much to live out. Pushing back against constant pain is exhausting work in itself. Add to that my somewhat irrational belief that if I was hurting, I may not be doing enough work, so I therefore must work harder. I know. That’s what therapy is for.

I probably held out for about a year longer than was wise. Looking back I honestly don’t know how I did it. My time was spent getting through the day without showing anyone how much I was hurting. Some days I pulled it off, other days not so much. My evenings were mostly spent in a dark room with ice on my head. An evening meeting would throw a wrench into the whole process and I would pay for it in pain. Last month when I stopped pushing through the pain and began medical leave, the exhaustion caught up with me. Damn, I was tired. Still am.


I’m entering week four of my medical leave. I am more at peace with all of this than I was three weeks ago, but it remains a huge challenge. I feel disconnected from such a large part of myself. I know that my church is fully capable of carrying on the life and work of our congregation without me. I know that I am not indispensible. But I belong in the pulpit and by the bedside, by the casket and the font. I belong at committee tables and in the work of the wider church. It hurts not to be there and yet I know I cannot do those things right now. I never dreamed that it would be so difficult to turn the care and compassion that I share with others toward my own needs.

I think that a part of what I’m experiencing is the difference between vocation and career. I am not absent from a job. I am absent from my calling. There is a huge difference. My ministry is not my whole self any more than my arm is my whole body. However, my ministry is a vital part of who I am. No wonder I feel so disoriented.

I will be back. I need this time to regroup, rest, and heal. I will need to strategize about the best way to make my ministry and my medical needs fit together in the same life. I may need to rethink my overactive work ethic and come to grips with the reality that I don’t need to justify my presence at the church with the number of hours I log. No one has that expectation but me. The people in my congregation love me and I love them. I need to let that be enough. I need to be mindful that God loves me too, even when I don’t have the strength to do it all.

Life has thrown our family more than a few medical curves. My partner lives with multiple sclerosis, diabetes, and trigeminal neuralgia. I struggle with chronic depression, anxiety and chronic daily headache, all of which are highly treatment resistant. We have come through these challenges well, or at least, as well as possible. Life is anything but predictable. It can bring times of hurt and heartache, but also an abundance of joy and grace. I have had more of the latter and for that I am eternally thankful.

Somehow in the course of these past few years, my notion of Life As It Should Be has been transformed into Life As It Is. I’m not sure when that shift happened but I’m very glad that it did.

Even when the pain is at its worst and that desperate feeling of helplessness threatens to overwhelm me, I know one thing. I am not alone. My partner, our sons, and the circle of family and friends who surround us all with care are a deep and profound gift. When I spend long nights in the dark wishing away the hot knife in my head, I don’t waste time asking “Why me?” God does not cause pain. Ever. God sits there in the dark with me, shedding the same tears and feeling the same pain. Now in this time of renewal and healing, God invites me to curl up in her lap and simply be held.

This, friends, is grace beyond all imagining.

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