Don't you ever get frustrated? Living with Chronic Pain

> 13.06.2018

A few weeks ago someone asked me “Don’t you ever get frustrated?” He meant my prosthetic leg. He’s the father of one of my son’s oldest friends, and we hadn’t seen each other in a while. We natter like best mates when we catch up.

What I thought, but didn’t say, was ‘No, I don’t’. In truth, I did; but that was a long time ago.

My friend told me he’s suffering chronic pain, the type which slowly invades the lives of people who have lived well and always been active and sometimes lifted heavy loads; his pain is an occupational legacy, from working in a trade that takes a physical toll. There wasn’t a single cause, a triggering event; instead the pain slipped into his life with stealth until the burning along his arm settled in to stay.

I’ve thought about our conversation since; his question took me back many years. My friend’s distress was familiar to me, even though the chronic pain I lived with for decades, until I decided upon elective amputation of my left leg, was the result of trauma.

Frustration is akin to anger. We become infuriated, annoyed and irritated, vexed the pain won’t go away; and I used to rage against my foot.

Chronic pain changed my life—it waxed and waned in line with my demands upon my foot. The pain let up when I complied with its dictates and rested, and it roared when I rebelled. I worked out the triggers and tried to tame myself to suit, but I had too much life to live and pushed the boundaries so much I often came unstuck. My foot kept tripping me up and I felt like my body was betraying me.

Sometimes I fell prey to the ‘if onlys’—if only the pain would go away, if only it would give me a day off, if only I could do this one thing. But chronic pain won’t go away like a broken leg will, in time.

And, sometimes, I wished I could give my foot away to someone else for a day; I wanted affirmation the pain was real—I wasn’t imagining it, I wasn’t crazy or weak. 

This November will be fifty years since my left foot went in the moving wheel of a train, and if I’d allowed my life to be ruled by frustration for all those years I suspect I wouldn’t be here now, or if I were I’d not have made the life I’ve managed to make. I felt overwhelming pain and equally overwhelming frustration in the early years.

There are so many ways I could talk about my early frustration, and the anger which tagged along, and it’s something I may write about again, with other ideas in mind, but these are the ones coming to me today.

How and when did I leave frustration behind?

After the Accident …
In the first few weeks after the injury, when I was eleven, I had no idea what was ahead of me; I was in a happy, dissociated, state of denial. I thought I’d be running around again in a couple of weeks.

When denial faded, hope swelled. It didn’t seem like hope to me—more like realism. It was in fact another species of denial: pipe-dreams. I believed I’d get back to school full-time, play sport again, be able to catch a train and walk to school with friends. To walk without pain. Most of all, I wanted to be ‘normal’. Being disabled back then meant being ‘other’.

Every time my hopes were shattered despair and depression set in; and frustration. I felt like my foot was undoing my life, unraveling my family, and separating me from friends. Infections struck the foot without warning and I’d be back in hospital, again, with a drip in my arm. I felt trapped and lonely and powerless.

How my Parents coped …
I can’t really give their angle; I imagine it tore them apart. I witnessed their distress but I don’t know what it felt like, nor how they coped with their pain and grief and frustration.

Before my father died, a few years ago, I asked him about those years. It was while I was writing a memoir. His response was “Fay, I just can’t go back there. It’s too dreadful to even think of.”

I couldn’t ask my mother; she had died decades before.

What I appreciate, now, is Mum was not one to allow me to wallow in ‘what ifs’ or ‘if onlys’. I’m sure she knew those ways of thinking are the quicksand of the mind—they suck you into a dark place from where there’s no escape.

If ever a self-pitying word slipped from my mouth she was quick to say, “You can’t change the past, you can only change the future.” Adding, “We can’t all have our druthers”.

From frustration to acceptance …
I cannot name the moment when frustration moved on, taking anger with it; when something like acceptance moved in. My quirky humour suggests to me it may have been when everyone was taking up jogging; it was a quite a thing in the 70s and 80s. Running around city asphalt and raising my heart rate to the point of collapse did not appeal to me at all and I had the perfect excuse.

On the level with you, I think acceptance came gradually as I learned to develop new interests. A little like cultivating a new garden bed when the old one dies.

At first Mum encouraged me to knit and, with all the time I had just sitting around, I made so many jumpers and cardigans in the first year or two my family, grandparents included, begged off getting more.

Then I added poetry and playing guitar to my repertoire of new passions, and reading became a way of life.

It’s not a straight line …
Getting over the frustration of chronic pain, and the trauma, was not a linear process. Trauma pulled me back in all the time; it traveled with me.

I’ve kept a note I wrote to my writing mentor when I was working on redrafts of All Stations to Waterfall. He’d questioned why I’d structured my draft manuscript in three parts.

I wrote, ‘I pictured my high school years as a triptych panel: the first two years are those of optimism and hope repeatedly confounded by obstacle after obstacle; the next two are the dark years when I was chronically ill and surrounded by conflict, destruction and loss; by the final two years I was preparing a path for myself, not happy years but there seemed to be an end, one way or the other, in sight’.

I told him the years I was struggling with in the manuscript were the dark years. I wished I could leave pages blank with a note saying ‘Do not venture here’. For me, as it was for my Dad, some things felt too terrible to contemplate. I was surprised how hard it was to write of the time when frustration had the upper hand.

But I probed those years of shadows. At times I felt like a hunter stalking memories, so jagged, so razor–sharp, they hurt to handle. Traumatic memories are often stored in pieces, compartmentalised, so triggers don’t bring everything rushing back at once. Instead we get a glimpse, something we can cope with. Following the amputation of my foot I felt able to return to those years and writing gave me a way of bringing the memories together.

Trapping the memories, tying them down in a story, transformed them and, in the process, changed me. For many years I believed my accident tore my family apart, and it played a lead role, but at last I was able to separate my insights from my emotions.

And now …
In the past I might have felt I was telling the truth if I replied ‘No, I don’t’ if someone asked me ‘Don’t you ever get frustrated?’

Writing restored my recall of those early years after the accident and I told my friend, “Yes, I used to get really frustrated!”