I live with Chronic Pain. I prefer not to tell people that my body isn’t meeting its full potential. I hate hearing myself say it and I feel like I am constantly complaining. I hear myself speak and I flip flop between thinking “but that’s just a tiny sliver of my experience” and “I sound like a bit of a princess”. So I pretend that it’s not so bad, I make jokes about it, I compromise my body; I don’t tell people when it hurts. I don’t ask for a seat on the bus because I look healthy and I’d rather not explain to strangers. It’s hard to repetitively explain that although my disability can’t be seen, it is still real. So I stand, and the jolting of the bus makes the pain worse. I make plans because I am hopeful my body will cooperate, and I wait until the last minute to cancel because I don’t like to admit, even to myself, when it doesn’t. I feel flakey and I am upset that I have let people down. I think, “this isn’t who I am”.
I recently heard something called Spoon Theory. It helped me articulate, even to myself, my daily experience and I think it will help you understand my experience. A woman described her experience of Lupus to a friend at a diner using the cutlery at hand as an illustration.
Adapted for me, it goes a little something like this: Every day I get so many spoons, say 12. Each activity costs me a spoon; my morning ablutions, each hour of work, walking the dog, 30 minutes of housework, my exercises, having coffee with a friend, grocery shopping, etc. By the time I get to work in the morning, I’m generally down to 9. I work for 5 hours and I’m down to 4 for the evening. I should spend one on stretching and strengthening each day, or I have fewer to work with the next day. Every hour I spend out of the house after 7pm costs twice as many spoons. If I don’t sleep well and the next day I start with fewer. If I am stressed, unhappy, or anxious, I have fewer spoons to work with. I can borrow spoons from tomorrow, but I have to pay interest on them; they can cost up to twice as much.
What happens when I spend too many spoons? The regular back pain that I have every moment increases; I get neck pain, increased fatigue, and post-concussive symptoms like migraine, nausea, and vomiting. This is how I live my life – every day making decisions about what I am willing to spend my time and energy on; each activity costs. It doesn’t mean the activities I choose to do aren’t joyful – I have so much joy in my life – but it means I am limited.
Before I was hurt, I loved school. I was working on simultaneous bachelor’s degrees in Engineering and English Lit and I looked forward to working in the corporate world and taking it by storm. I swam on a competitive team, I loved the outdoors, and I was a pretty social person.
After the accident, I spent 7 years trying to finish school; I would take one or two classes in the fall semester, start the winter semester and drop out because the compounded pain over the previous months made it difficult to concentrate: I became an exhausted knot of anxiety and depression. The loss of academics, the sport I loved, and the energy for a social life threw me into a deep depression. Before the accident, I was active, ambitious, and social and for a while, it seemed as though accident took all of that away. I had defined myself by my accomplishments. And so for a long time, I hated myself because I believed I no longer had anything to offer to this world. I believed that because I felt I had nothing left, my life only served to bring other people down.
But through my imperfect desire, He has shown me glimpses of what it looks like to understand that my worthiness lays in him and not in my accomplishments or myself.
Over the past few years I have accepted the compromises I have had to make and I am much more at peace now. But sometimes I am still angry and sometimes I have dark days. Turning to God has lessened the darkness, but my own efforts to turn to him are not enough. The book of Mark describes a father who cries out to Jesus in desperation, ‘I believe Lord, help my unbelief’. This heart cry captures my desire for God to grab hold of me. I long for God, yet cannot allow myself to fully admit him into my life. I hold simultaneous feelings of desire for God and angry rejection of him because of the losses I have suffered.
But through my imperfect desire, He has shown me glimpses of what it looks like to understand that my worthiness lays in him and not in my accomplishments or myself. Paul writes in Ephesians that God loves us, and chose us to be his own before he created the foundations of the earth. God loved me before I had accomplished anything – he loves who he knows I am, not who I think I am. It is still difficult for me to see this. My natural inclination is to see the brokenness in the world over the good and the joyful – to see where life has failed me, rather than where God has provided for me and loved me.
My favourite Psalm is Psalm 88, which ends with the line ‘darkness is my only friend’. Here is the thing though; I think there is a reason that only one Psalm ends without resolution or praise. God is okay for us to be unhappy for a time – he gets it, he wants to hear our laments and be present in it with us. Pain, emotional or physical, is not what He wills. There is a deep joy in his love and promise of a future life in his presence that transcends our earthly experiences of pain, suffering, disappointment, and unhappiness. I am slowly starting to believe this truth. And I am beginning to love new things and beginning to see my old loves expressed in different ways. It’s still disappointing, but it’s better.
I have to remember that God gives me my spoons. Some days he blesses me with more and I love those days. I still go through times of anger, disappointment, and depression, but I have to remember, and keep reminding myself, and have people remind me when I forget, that God didn’t do this to me. God didn’t cause the accident that brought the pain, but in the pain and the losses, God shows me (when I remember to look to him) the strength and joy he can offer. And more than that, he shows me hope in the life to come where I will have an unlimited number of spoons. Sometimes I believe it and I desire to believe it more often. Lord, help my unbelief.