Joseph Boon Name: Joseph Boon

Age: 32

Where do you call home? Palmerston North, Aotearoa New Zealand

Education (degree(s): Bachelor of Arts double major from Victoria University of Wellington. I am considering getting a further teaching qualification, but I haven’t made up my mind.

Who do you live with? I live with my sister.

What's a typical day for you? I spend my days painting, drawing, reading, writing letters, exercising, dog walking, watching good films and TV, and spending time with my young nieces and nephew. I also like to meet friends in cafes. Depending on my level of energy I may do any, or all of these things in a normal day.

How long have you known you are living with FA? My elder brother, my younger sister (with whom I now live) and I were all diagnosed at a consultation with Dr Richard Roxburgh in April 2008. Mum and Dad drove the three of us from Palmerston North to Auckland (a 6-7 hour drive depending on traffic and weather) just for the appointment. It lasted about two hours and we drove back immediately after - the wind utterly taken from our sails.

Are there any others with FA in your family? Of the five children born to my parents, three of us have FA (including me)

Describe your transition from walking to walker/wheelchair. With FA there is no end of adaptation. But briefly, I was ordinarily clumsy when I began high school, and by early 2008 (my senior year) it was now very marked. I had developed scoliosis, and by this time I had great difficulty moving around in unfamiliar environments. Sticking to my regular places at school hid this to some degree. In December 2008 I had spinal fusion surgery, and the recovery from this was very hard. I lost about 20% of my body weight in the month after the surgery, which was a shock since the straighter spine made me 5ft 11 and a half (I like to claim 6ft in shoes). Already quite lean, I became quite the bean pole! However, I went headlong into my first undergrad year at Victoria University of Wellington the following February. At this time I was using a cane, and trying to get away with as little adaptations as possible. I was still fighting the diagnosis. My studies were delayed a bit when I took a year off in between 2nd and 3rd year, and split 3rd year into a two year period. In 2013 I went through the arduous - and unfamiliar to me - process of getting a wheelchair. The previous year I had been spending all my time in my hostel room and only physically attending tutorials when I had to. But the chair took a long time to arrive, and when it did I kept it locked in the back of my car. I only used it if I had no other options. I sometimes crawled to where my car was parked. From 2015 until January 2021 I used my manual wheelchair with a smartdrive, until I was bullied into a power chair by well meaning Occupational Therapists. The result of that has been a much faster progression for me, and weight gain. Fortunately, I might be able to get a far more suitable chair in the near future, but I don’t want to appear a fool if it doesn’t happen, so I’ll say no more.

What do you like to do to stay active and what type of exercises work for you to stay strong? Core exercises, squats (with weight-belt and without), stretching, rowing machine, walking along parallel rails, seated deadlifts etc.

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Do you have any hobbies or special interests? Many. One in particular is a fondness for collecting typewriters. I had 14 the last time I counted, but I’ve just moved house so my collection is in flux! I like writing letters, and in 2012 got an old Olivetti Lettera 32 because it was frustrating that my handwriting was so inconsistent and tiring to do. A typewriter seemed a good way to write legibly and easily, yet still felt more personal than just typing on the computer and printing it out. A love affair with the splendid machines thus began!

What is a good trick to make daily life easier? This may be applicable to those using wheelchairs. Stand whenever possible, even if only for a moment. Everything is improved by it.

When FA gets you down, what do you think/do to feel better? I take my dog for a walk, and I see my nibs (nephew, nieces). They always put me right.

What is one way living with FA has POSITIVELY affected your life? I was quite an opinionated and zealous young man, I think FA has tempered some of that and I am now wiser for it. I hope so.

What is a favorite motivational quote of yours? “KBO”, which stands for Keep Buggering On. A favourite aphorism of Winston Churchill.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I was not ready to take advice when I was newly diagnosed, so it would be presumptuous of me to offer advice. Instead I would offer to just listen.

What is the first thing you want to do when a cure/treatment to FA is found? Get the campaign going for PHARMAC to fund it.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? That statement annoys me. FA is not a person, or even a specific entity. It is merely a genetic coding error with many consequences. It’s not worth personifying, or denying. I am certainly defined by it, just as I’m defined by my typewriter collection, and the books I read, and the clothes I wear, and my stubborn, empathetic, pedantic, romantic, absent-minded personality. I don’t want to bother with cliches like “life in the face of adversity.”

Interviewed by

Interviewed by Brittany Sommerfield