When I was six years old I developed juvenile rheumatoid arthritis.
That’s a fact I’ve stated many times in the last 12 months. I’ve told big groups and I’ve told reporters.
It’s strange to say it so bluntly and so publicly. In nearly 50 years of having arthritis, it has never been the first thing I would tell people—or even something I would deliberately draw attention to—despite it being physically obvious.
The decision to write a memoir, telling the story of growing up with juvenile rheumatoid arthritis (JRA) and dealing with the resultant damaged joints as an adult, was a big one.
I wrote the first draft of The Walking Stick Tree when I was in my 30s, as a student on the Whitireia Creative Writing programme. Capturing the early years of the disease took me back to fiery places. Trying to find words for the pain stretched me. Well, it nearly did me in actually. As a child and teenager, there were times when my joints were falling over themselves to be inflamed, catching the inflammation from one another like the passing of the Olympic torch until this sick place called my body, was alive with it.
During that time I lost a lot of movement in my joints. One of my doctors said my version of JRA was of a particularly stiffening kind. Despite exercises, maintaining a full range of movement was impossible.
As a writer I love the power and playfulness of language but I also think images can tell a story. In The Walking Stick Tree there’s an illustration by Sarah Laing called ‘Survival of the adaptist’. Several items in that illustration (my sock putter-oners, my hairbrush that goes round corners) came from having to find new ways to do daily tasks. Creativity bursting onto the scene—by necessity.
I picked up my manuscript again when I turned 50 and tried to deepen and broaden the story. ‘Deepening’ and ‘broadening’ had been my own experience in those previous two decades. Professional therapeutic help was a lifeline as the emotions around having arthritis and the fatigue from pretending to be the same as my peers caught up with me.
I also began connecting with other people with impairments. Even if our impairments were different, we had many realities in common: battling inaccessible environments, battling benefit bureaucracy and trying to balance work and fatigue. The best connections however were when we not only had these things in common but also writing, spirituality and other core aspects of who we were.
As a reader I like writing that opens my eyes to a new experience.
As a reader I feel like I’ve found a gem when I read a phrase that captures my own experience and offers it back to me, affirmed and expanded.
As a writer I wanted to tell the inside story. What may be obvious from the outside, leading people to think they know what an experience is like, is so often very different from the internal reality.
When a broader range of voices is heard in all the areas where writing lives, I think we all benefit. It means we don’t get clichéd stories, but real, nuanced insights into experiences other than our own.
That pretty well sums up why I wrote The Walking Stick Tree—going public with what is still a very personal story.
Trish Harris works part-time in Communications. She has also worked as a tutor, an editor and run a small card and calendar business. Her memoir, The Walking Stick Tree, includes narrative, personal essays and illustrations. Her debut poetry collection will be launched on Saturday 14 October, 2.30–4.00 pm, Pātaka Art + Museum, Corner of Norrie & Parumoana Streets, Porirua. My wide white bed captures the life of an orthopaedic ward from the point of view of a patient.