If you want a story with a happy ending—or indeed, any kind of ending—you’d better stop reading now.
This story, like an unfinished symphony, is incomplete. I am still living this story; I do not know how it ends. All I know is I am currently stuck in the middle of a seemingly endless stretch of illness. And it’s not just the ordinary madness of lupus with which I already live. It’s a particularly nasty flare that has now been flaring for four months.
Being stuck in the middle is many things: confusing, upsetting, infuriating, depressing. In a nutshell, it sucks. And it’s for all the obvious reasons: I can’t make plans, can’t work, can’t do the things I love, and can’t tell anyone what’s going on—coz the doctors don’t know.
I can’t tell anyone what is going on—coz the doctors don’t know.
It all started with a cold. Stupid, right? It still boggles my mind that a tiny virus can completely disable a person. But I digress. I had problems breathing from day one. The cold resolved after a couple of days, but the breathing difficulties did not. My doctor sent me to hospital because I couldn’t talk in sentences. I was wheezing and there was this uncomfortable tight sensation across my chest.
The hospital couldn’t find anything wrong and discharged me. Cue four months of ongoing tests, scans, bloodwork, specialist referrals and medical cul-de-sacs. Theories were tossed around like litter about what might be wrong with me. We worked out my heart was not behaving, but we couldn’t figure out why. Every single heart scan came back normal.
Meanwhile, I struggled on with the breathlessness. It triggered every time I exerted myself: walking, housework, singing, even talking could render me completely out of breath and exhausted, sometimes for hours afterwards. I couldn’t go to work as my job revolved around talking. I couldn’t sing at church. I couldn’t walk around the shops. I’d run out of puff after talking for a few minutes and leave conversations hanging.
Even talking rendered me completely out of breath and exhausted.
This is normally the part of the story where I tell you that something magical happened. Then something changed. Then my doctor had a eureka moment. Then they found something on a test.
I’m still breathless, a little better than when this all began, but I’m still quite limited in what I can do compared to my ‘normal’. We have followed all medical investigations to their logical conclusions, and there’s no definitive answer. Without an answer, we can’t treat it, and without treatment, I may never get back to normal. I am stuck here, disabled, locked down, in limbo.
I may never get back to ‘normal’.
How does this affect me? Some days I’m fine; well, not fine as such, but I keep my head and stay calm and remind myself that I am making progress, if not turtle-paced progress.
But some days are rough. Doctors can’t find the root cause of the problem and can’t help me, so I am now at the point where I cry after every medical appointment, sometimes during, because I am so disappointed. I keep hoping for answers, for a light at the end of the tunnel. That hope has been smashed against so many rocks it’s a wonder it’s not completely shipwrecked by now.
This is how it feels to be stuck in the middle. This sucks.
It sucks when I travel into the city for a major medical test, have a bad reaction to the test, wind up in ED, tell myself it will all be worth it if the test finds something, and the test comes back completely normal.
It sucks when people tell me they miss me, say they’re looking forward to working with me again, ask me when I’ll be back—and I have no answer.
It sucks when I think of all I wanted to do this year, my hopes and plans and projects, and how much I’ve lost. And it sucks when I consider all I may yet lose.
It sucks when I consider how much I’ve lost, and all I may yet lose.
My body feels like a washing machine of grief: anger, depression, anxiety, sorrow, denial, guilt and hope all mixed up together in the suds of disability. I’m exhausted.
Where is my faith in all this? It ebbs and flows like my feelings. For the most part, I put my trust in God. But on bad days, I get upset with him. I feel like he’s not helping me. I feel helpless and hopeless. I wonder whether there is any point in clinging to hope; it feels so futile. I get angry. I run out of words, like an unfinished symphony. I don’t know how to pray.
So I vent and cry and collapse against him and let him hold me. I keep my prayers ridiculously short—‘Help’—and then we just sit together. I am practising being quiet with him, paying attention to stillness, without having to say anything. It’s the most helpful form of prayer right now. There are occasions when I remember his goodness and I thank him and worship him. But I am inconsistent. Thank God he is more consistent than me.
I am practising being quiet with him; it’s the most helpful form of prayer right now.
That’s all I’ve got for now. I am all over the place, but God is faithful and present. He is with me. His grace waits for me after every appointment, every result, every piece of medical news, whether good, bad or indifferent. When I collapse on him, grace is there to greet me. Just for today, it’s enough.
Will I be able to cope with this? Will I continue to struggle? I truly don’t know. Ask me in another four months’ time. Will God’s grace always be enough? It’s hard to say. But I hope so.
Are you stuck in the middle of something awful right now: illness, unemployment, conflict, mental distress, a faith crisis? How are you coping—or not? How is it affecting your relationship with God? Share your story. Let’s have a countercultural conversation.