A lament for a diseased body, a question redefined … and maybe a calling

How annoying, how unsophisticated, how inconvenient to my intellectual pretensions when a cliché appears to have more than a grain of truth to it. In this instance I’m thinking of “A problem shared is a problem halved”. It’s not true of course, not in the literal sense. If I talk to you about a problem with money, it doesn’t mean that my debt is halved (unless you’re both very rich and also a very free giver). It does mean, if you listen well, that the secret has lost its power. It is in the light now, with someone I trust, and while the situation hasn’t objectively changed, it has done so in a subjective sense. It feels different.

I was diagnosed with a chronic disease in 2000, our first-second year of marriage. I had, it turns out, been experiencing the symptoms for a long time. Severe ‘shin splints’ whilst running or playing football weren’t, it turned out, shin splints. Some nights I would sleep well, many others I would be unable to sleep past 3 or 4 a.m. Not for the reason that newly-marrieds are supposed to lack sleep. Pain would wake me and keep me awake. With diagnosis came treatment, which has been a long journey. The journey is still ongoing. I reached a kind of equilibrium: accepting I had a disease around which my life needs to be centered, and being willing on days I felt able to, to ask for prayer for healing or strength or comfort. It’s a balancing act to be sure. Ironically I’ve never been very good with physical balance; but emotional, theological and spiritual balancing seems to come somewhat more naturally more to me.

In learning to orient life around this reality we (I include my wife in this, for it inevitably exacts a toll on her also) to a certain extent forget what it is we’re carrying. In integrating the joint possibilities of total remission or a wheelchair in later life there’s a strange forgetting that goes on. Until you meet someone else.

It wasn’t until I took a phone call a few weeks ago that I began to recall what we had been carrying. A mother who knew us through a church had found about my diagnosis and got in contact to say that her daughter also has the same disease and wondered if we’d like to all get together for dinner. We did. It was the first time we had deliberately and consciously sat down and chatted with others who had actual, real, personal experience of this evil but strangely relatively unknown disease. A week or so later I discovered a Facebook group for people with the disease.

These two experience, the one across a dinner table the other across the ‘virtual’ (but no less real) reality of social media have worked a strange magic on me. Suddenly there are safe places to ask questions about the disease and its implications which I had never allowed to bubble to the surface simply because there was nowhere safe enough to take them. Suddenly the story of my wife and myself was not just the story of the struggle of two people, but one caught up in a much bigger story in which many, many others are also writing their own chapters.

This experience of suddenly, 14 or so years after diagnosis, experiencing that we are not alone has been one of the removal of a burden I hadn’t even allowed myself to remember I was carrying. I can feel lightness on continually aching shoulders. My back and joints are, of course, no less pained. We’re not talking physical healing here. It’s deeper than that – the healing of no longer walking alone but having eyes opened and seeing there’s a crowd walking around us we’d never noticed before.

In laying that burden of solitariness down I’ve realised what it is that I am carrying. A lot. Pain (on a bad day the equivalent of a severe childbirth), fatigue (a symptom of the disease, the hardest to treat and the most emotionally debilitating), the endless medication, the financial cost, the things I am may not ever be able to do (I miss playing football and running), the dread of cold and wet weather, the  people who don’t believe you really have a problem, the people you think for reasons you can’t articulate don’t believe you, the passing it off as ‘a bad back’, the dread of sleeping somewhere with a bad mattress, the injections, feeling I need to move those chairs because there’s no one else to do it and living with resultant pain for days, the comments like “You’re young to have a back problem”, the well-meaning ham-fisted attempts to help about which you need to be polite, the way it affects intimate aspects of our lives, the taking a long journey at holiday’s beginning and end and living with resultant pain for days, the broken sleep for both of us, the needing to stretch and shift every hour or so … You want more? I could give you more. I typed that list without even thinking, and I could go on. I really could. Along with the relief of discovering we are not alone has come through the “Yes, I have that too” of other sufferers a kind of grieving at grievances foregone. If you need to get on, you don’t have time to mourn. So I’ll be catching up with some of that, I think.

It’s no coincidence that there’s a correlation between this disease and depression. Intense pain and daily fatigue is hard to bear. Trapped in that emotional spiral it’s tempting to ask a common question “Why me?”. “What have I done to have to bear this?”. “Who sinned? Me or my parents?”

As ever, Jesus’s answer isn’t so much an answer as it is a redefinition of the question. He’s whispering a question in my ear. What if, He gently lilts, this is a gift? A gift for being faithful with a few things so you’re being entrusted with much? What if this isn’t a punishment but a calling, asking me to teach with words and deeds and struggles how to seek healing alongside learning to live with what you have? Not that God wishes this on me. Far from it. He wants me to transcend it. To allow Him to show me and others that there’s more to pain than pain, more to a sufferer than a diagnosis, more suffering than just the suffering.

I don’t feel that I’ve been faithful, I can’t see where God may have got the idea that I can drink this cup. I don’t claim much for myself. Bad days can be bad indeed. Many parts of me feel broken and wounded. I’d love the cup to pass from me.

As the prophet sings, however, “Let the broken hearts stand as the price you’ve got to pay”.

In that lament there’s a kind of peace, and a path to healing.

Amen. Let it be to your servant as you will.

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3 thoughts on “A lament for a diseased body, a question redefined … and maybe a calling

  1. helpful, thank you. on the same level as you found it helpful finding others’ expressing the same things that you’ve experienced

  2. very helpful and very relevant while not easy to entertain the topic. I agree about the calling and that God does not wish the lifestyle upon us but can enable us in it ..

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