Chloe Swarbrick stands in hopes to replace James Shaw as Green party co-leader. Greta Thunberg has her charges dropped and children all around country are feeling the cost of living as families go without.
In July 2022, Auckland teacher Robyn Pryor was diagnosed with motor neurone disease. Joining “the worst club in the world” has seen Pryor face the reality of living with a degenerative neurological condition with no known cure. The 60-year-old details the challenges, her fears of being silenced by the disease, beingdisabled by the incompetence of others and purchasing one final piece of real estate.
Inhale. I missed the call. I’d been teaching period 3, and with exams around the corner, had offered a lunchtime tutorial. Ngugi’s Petals of Blood. The voicemail message simply said, “Dr Hill has had a 5pm cancellation this evening. Let me know if you would like it.” It was a Friday in July 2022.
Prepared, but not prepared at all.
My husband, Rob, and I arrived separately, both early. Rob was already waiting in the carpark. We’d been through this before in 2020 for Rob. We had sat together in Dr Rose’s office to be told that he had cancer. We’d had the dress rehearsal and knew the script. But I had forgotten my lines.
Robyn Pryor and husband Rob. Robyn was diagnosed with motor neurone disease in July 2022.
Prepared, but not prepared, because nothing at all prepares you. “Motor neurone disease,” she said. “We’re worried about how quickly it’s advancing.” I watched her words swirl in the air and tried to catch them, but they drifted to the floor. “You might want to consider giving up work,” she said. “You’ll need a wheelchair.” I wanted to leave them there to be swept up and disposed of by someone else, but her words were now my words and I had to try to make sense of them. “It’s untreatable.”
My leg had been weird for a while, but I had either ignored it or been distracted by more pressing matters, like Rob’s cancer and Covid lockdowns.
I heard it before I felt it. As I walked, I could hear the slap, slap of my right foot, like a rubbery jandal tapping on a lino floor. I heard it through the hush of the community taking a breath from their locked-down lives to thread their way around carless streets on their daily walks. The slap turned into a limp, barely perceptible at first, but then it became more pronounced so that it was an effort to lift my right leg up the stairs. Step left, swing right. Mr Teabag without the bowler hat.
I did my own research. Google told me I might have MND. Or ALS. It depended on which website I was reading. I didn’t want to believe it, but Google kept giving me the same response to my ceaseless questions.
I limped from specialist to specialist until eventually I got a referral to a second neurologist, Dr Hill. I didn’t like the first one. He was creepy and made me sit on his bed in my bra and knickers for a long time while he silently examined me. Is this normal? I don’t know. Dr Hill revealed my diagnosis. She never asked me to remove my clothes.
There is no cure for MND. There are no pills to take, no bits to cut out, nothing to zap. I will become a petri dish, a specimen in a jar that is observed, recorded, resealed, set aside, nothing to be done here.
This is what I might expect:
My legs will stop working. And maybe my arms.
I will no longer be able to talk.
I will no longer be able to swallow.
I will no longer be able to breathe.
I will die.
Apparently, I had just joined the worst club in the world, a club with a New Zealand membership of about 400. This is no ordinary club though. You don’t want to meet its other members. To do so would be too confronting. Who wants to see the you that you will become? It is a lonely club and I felt isolated, adrift and scarily ill-equipped, despite the team that quietly gathered around me - two physios, an MND support person, OT, SLT, neurologist. My GP is supposed to be there somewhere but he is missing in action, even to this day.
We left Dr Hill’s office and made our way home. I don’t remember anything about what we did next, apart from having a glass of wine, and then another, and then another... because the neurologist said I could.
A week later my inbox delivered the words I had left scattered on her office floor.
Unfortunately, I think it is likely that this will prove to be a form of motor neurone degeneration. I have assured Robyn that the diagnosis will be reconsidered if there are any unexpected developments. For the time being, we will manage her as though motor neurone disease is a possibility.
"The thought of being silenced filled me with horror. I had stories to tell, opinions to share, wine to order," writes Robyn Pryor.
Over the next few weeks, I tried to digest what I knew, what I didn’t know and what I didn’t want to know.
What I knew from various medical websites was this: motor neurone disease is a progressive, degenerative, neurological condition with no known cure. MND is the name given to a group of diseases in which the nerve cells (neurons) controlling the muscles that enable us to move, speak, breathe and swallow degenerate and die. With no nerves to activate the muscles, they gradually weaken and waste. The effects of MND vary significantly from person to person. The average life expectancy after diagnosis is two to three years.
What I didn’t know was the emotional impact. My searches online revealed a surprising lack of information; what I did find I struggled to digest. It felt too raw. People spoke of being “destroyed” by their diagnosis, “unfairly robbed of a future” and likened the development of the illness to “disappearing in quicksand.” But a common thread was the importance of family. One man, diagnosed in July 2015 at age 48, wrote: “It is love that sustains us through it and nothing reflects that love more than the care of our families when the chips are down.” He died in July 2021.
What I didn’t want to know is which muscles my brain would choose as their next target. The MNDNZ website gave me one prediction: “MND can cause weakness in the tongue, lips, vocal cords and chest, causing speech to become faint, slurred or unclear. It can also affect gesture and facial expression. This means communication can become increasingly difficult as your symptoms progress.”
What might I want to say when I can no longer say anything at all? The thought of being silenced filled me with horror. I had stories to tell, opinions to share, wine to order. I had devoted an entire career to communicating with others. My voice was me.
But the diagnosis itself had already silenced me. In the same way that we reach for the remote to silence the ads on TV, to mute the drivel that you don’t want to listen to, I muted my diagnosis. We told only family, a few close friends and my boss. Apart from that, I did not want to give voice to my condition. Giving it air meant giving it life.
Nine months in and I still struggle to say those three words out loud. I find myself snatching at euphemisms when questioned about my immobility by strangers - and it happens more often than you’d think. “Have you just had [hip/knee/insert here whatever medical issue the speaker is afflicted with] surgery?” “No, I have a muscular condition.” Vague but true. And easier than dealing with the awkward response that would inevitably follow.
There was silence, too, in the struggle of friends and colleagues as they searched for an appropriate response: “No words.” “I don’t know what to say.” This was in fact the right thing to say. I didn’t know what to say to myself. In lieu of words, I received hugs, many hugs, which induced tears but which did not require an answer. I kept a mental list of those who cared enough to offer some sort of acknowledgement of this shitty news. I was surprised by some names that did not make the list. You learn a lot about people.
I did not want to allow MND to silence me. Already I could hear changes in my speech: a stumble over the odd word during leadership meetings, lazy pronunciation when I read aloud to my students, the occasional sober slur on the letter “s”. My ability to communicate clearly was deteriorating. Thankfully, I was introduced by a colleague to a lecturer in Speech Language Therapy at Massey University, who put me in touch with TalkLink and the voice-banking software Acapela.
To “bank” my voice, I began to write down the words and phrases I unthinkingly use every day, knowing that I needed to get these recorded before my speech became too slurred or unintelligible. 150 words and phrases are apparently all it takes for the computer programme to make me sound more Robyn Pryor and less Stephen Hawking.
When I finished, my recorded voice lay dormant in a cloud somewhere, ready to engage in scintillating conversation with the world. I was excited but also vaguely unsettled. A bit like Victor Frankenstein, I was unsure about what I had just created and reluctant to bring it to life. When I eventually did, it didn’t sound like Stephen Hawking but it wasn’t me either. I shared it with Rob, bleakly amused by the metallic twang of my voice, but when I realised he was crying, I silenced her. We weren’t ready. Prepared, but not prepared.
After being diagnosed with motor neurone disease, one of Robyn Pryor's fears is "not being here while everyone else carries on living life".
These are the things I’m scared of:
Being a prisoner in my own body, straitjacketed by an illness I did not invite into my life.
Losing my independence and being fed, showered, dressed and toileted by strangers.
That people will look at me and think I’m a freak - or listen to me and think I am simple.
Dying, and the bleak, black nothingness of whatever comes next.
Not being here while everyone else carries on living life.
That Rob will find someone else to love.
Every day I am reminded that the human body really is a miracle of engineering. Take walking, for instance - the complex technology that triggers the brain to send a signal through the spinal cord to the nerves to enable us to put one well leg in front of the other. From the window of our eighth-floor apartment, I marvel as people saunter, run, plod, amble and stride around the streets below. Sometimes, during my “low mood moments”, I am resentful of these people who are able to do the things I can no longer do, the things that are now “off the menu”. Most times, however, I can appreciate the things my disabled self is still able to do.
In her book, Waist-high in the World, MS sufferer Nancy Mairs explores the language used to define those of us who are “physically challenged”. We are variously described as crippled, handicapped, differently abled, mobility impaired, or more commonly (and some would argue correctly) disabled. But Mairs, quite rightly, is reluctant to use this word, regarding it, like all “binary” terms, as “existing in relation to a privileged opposite”. The prefix “-dis” connotes negativity so, by definition, I am not able, or lacking in ability. This might be true of my legs, and more progressively my speech, but I am certainly able to function in many other ways. I am able to bake biscuits for the boys, read a book and enjoy a meal out at Soul. I am able to hear, taste, see, smell and feel. I am able. So if anything, I’ve come to prefer the word cripple. Not for any rational reason other than it fits well with our tragic list of “C” challenges we have endured over the last three years - Covid, Cancer, Crippled. A neatly alliterative threesome.
Instead of regarding myself as disabled (and believe me, there are many occasions when I still do), mostly I do appreciate my good fortune to have things that enable me: my crutches, my wheelchairs, my shower and perching stools, my grab rails, my sit-to-stand chair. All have enabled me to move, cook, shower and stand upright. Along with equipment, I have my family, friends, colleagues, physios and other specialists, and most importantly my husband, who have enabled me to keep taking one figurative step at a time. And they continue to enable me to face my very certain future with more strength than I think I can muster sometimes.
My enabling equipment has not always brought me great joy. My crutches are the graceless appendages of Anthony Sher’s “lump of foul deformity” that is Shakespeare’s Richard III; my wheelchair is the “wheeled chair” of Wilfred Owen’s Disabled. I actually cried when we bought it: “It’s not an Audi,” I sobbed. The DHB-supplied equipment is unforgiving in its rest-home functionality, its steel-grey sterility implying that my condition has crippled my sense of style. Despite this, these things have enabled my disabled self, and for that I am grateful.
But I have all too often been dis-abled by the incompetence of others - airport staff, roading engineers, architects, bureaucrats. The weight and hang of the door on our apartment mean that I am physically unable to open it. The long, sloping path from the disabled carpark to my office means I am unable to walk it with my crutches. Our first trip to Sydney post-diagnosis, designed to stick a very erect finger at MND, left me without wheels for the first 32 hours after an airport baggage-handler “forgot” to load my wheelchair. My frustration echoed around the empty baggage hall and continued to echo in the very terse exchange of emails on our return as I tried to convey why the offer of flowers as compensation for their incompetence and complete lack of communication was woefully inadequate.
... I can only liken what I was put through to an able-bodied person having their legs chopped off as they boarded an aircraft and returned to them 32 hours later with no apology and no explanation for why they were chopped off in the first place...
I received 500 Airpoints instead, along with a very “generous” 30-minute stay in the Koru Lounge.
Further dis-abling includes the wheelchair “access” to our favourite local restaurant which, as an appetiser, takes me down a narrow potholed path along the outside of the building, nose-to-lid with the rubbish bins.
And then there’s Auckland Transport. What genius thinking went into the design and placement of the city’s disabled carparks? The two local disability spaces I would commonly use have obstacles that make it almost impossible to open my passenger door and transfer to my wheelchair: one is hugged by a tree and the other is blocked by two rubbish bins. We have so far avoided putting dents in the car door, but I’ve suffered a few dents to my pride inching along the length of the car, fingertips clinging to the roof, to “safely” reach my chair.
Even the more recently developed Wynyard Quarter is poorly planned in places. We were delighted to see a double disabled parking space on Jellicoe Street. But with the front park taken, we were left to park in the space behind, which forced us to navigate my chair across a dubiously positioned rain garden to reach the pavement. Beautifully impractical.
Wheelchair access to favourite restaurants and Auckland's placement of disabled carparks have created challenges.
Frustration aside - and there have been many - I continue to feel great fortune to have a husband who every day makes me feel whole. Who enables me to be me.
But who is me? When I was first diagnosed, I received a text from a friend reassuring me that “this is part of you but not all of you”. So true, and I try hard not to let this illness define me. But sometimes I’m not sure who “me” is.
I know who I was.
I was a teacher, a wife, a parent, a daughter, a sister, an aunt, a friend. I was active, independent, a planner, an optimist, healthy, confident. Who am I now? I look in the mirror and don’t even recognise my smile. The weakening muscles in my right cheek have slackened to produce what I have come to refer to as a ‘grinace’.
Every day I need to remind myself that who I am is irrevocably bound to who I was, no matter how loose the ties may seem at times. I was a teacher, past tense, but occasionally I will bump into past students and realise that I am still a teacher in their eyes. And I know I could still annotate the life out of a Gillian Clarke poem and problem-solve a poorly structured paragraph.
I do know who I am; I just need reminding now and then.
I may not be able to complete a 10km run, but I can take part actively and passively in physio twice a week and take “walks” with Rob each weekend.
I may have lost some of my independence, but I can buy a fabulous St Laurent handbag online and meet friends for coffee across the road.
I may not want to look too far into the future, but I can still plan one season at a time: a July escape to Melbourne, my next hair appointment, a birthday dinner at Onslow.
I am still a wife, parent, daughter, sister, aunt and friend - and for that I feel incredibly blessed, for these people all know who I am.
A Google search will tell me the things I should be doing right now:
The Bucket List. I have come to loath the load these words now carry. It implies that there is a limit to what I can achieve - that I can only do what it takes to fill my bucket and no more.
I have lived a full life. I’ve travelled to 17 countries, stood at the top of the Burj Khalifa, been on safari in Tanzania, walked the Milford Track, attended an FA Cup final at Wembley, watched Sir Ian McKellen perform on stage as King Lear, run a half marathon, lunched at the Dorchester, been up the Empire State Building. But I know that it’s not what you do or where you go in life that’s most important, it’s who you share life with. I have seen lots of places and achieved lots of things, but only in the last 14 years have I been truly loved. So, I don’t care where I am or what I’m doing, as long as I’m with Rob. Simply.
We are not on a mission to tick off any sort of list. I don’t need to swim with the sharks or get a tattoo. We simply want to continue to create memories and enjoy doing things together. And while we are both keenly aware of the implications of each trip and each experience, we are having fun in the now.
“How do I not see everything we do as the last?” Rob asked the counsellor at our first session.
“By being mindful of each moment and staying in the present,” she replied.
Despite my scorn for the word, being “mindful” is how I have always lived my life. I have tried to live according to my father’s adage, wisely but irritatingly imparted to me in my semi-rebellious youth when I had complained about not being able to do something or go somewhere.
“But these are the best years of my life,” I had wailed.
“Every year is the best year of your life,” he replied.
At 92, my father is still alive and still imparting wisdom. And it is to him that I mentally turn, often, since becoming ill. A post-polio sufferer, he inspires me every day with his uncomplaining and patient endurance; with his ability to keep seeing the fullness of his cup. And he was right, every year continues to be the best year of my life.
So, I will keep living life fully, if not wholly, and enjoy each moment spent with Rob. We have created some wonderful memories and will go on to create many more, even if from a different menu and even if that menu is seasonal.
Robyn Pryor has vowed to "keep living life fully, if not wholly, and enjoy each moment".
I sometimes wonder about the mess we leave behind. The boxes of photographs of 1980s hairdos, drunken farewells and failed relationships. A lace handkerchief, never used, but bought on a trip to Belgium. The cookbooks of recipes I have never made. Earrings purchased and never worn because I am too lazy and sentimental to wear anything other than the studs Rob bought me one Christmas.
I have an attic filled with stuff. My stuff and I have co-existed amicably for many years. It has sat there demanding nothing of me but space. I staged a brief intervention during one of the many Covid lockdowns. With a chance to pause and purge, I cleared my closet of ill-fitting shoes and seldom-worn clothes. We de-boxed crockery, linen, books and toys, taking a moment to enjoy the memories of Temuka pottery, school reports and old LPs. We gave our stuff a chance to breathe again, then happily sent it off to hospice to become someone else’s stuff. I wonder if the Instagram generation will know the burden of collecting stuff, or is their attic a cloud to be decluttered by pressing delete?
I have been more ruthless lately, forced out of necessity to declutter my clutter.
When my auntie passed away three years ago, she left behind a spare room stacked high with newspapers and magazines collected over the many years she had lived in her small unit. There was an ironing board that had never been used, expired tins in kitchen cupboards, Christmas cards unopened. Her spartan life was not spartan at all. My parents and brother decluttered for her. It was not a pleasant experience and they despaired at the mess she had left behind.
I have discarded and donated and have created a succession plan for my grandfather’s books and the Drummond tartan kilt. I am emptying my own nest so that no one else will have to do it for me.
Apparently, there is a name for this. Swedish Death Cleaning - although it sounds less morbid in Swedish. Döstädning - dö means death and städning means cleaning. Someone has even written a book about it - The Gentle Art of Swedish Death Cleaning: How to Make Your Loved Ones’ Lives Easier and Your Own Life More Pleasant by Margareta Magnusson. Magnusson describes the process as “surprising and invigorating” and I tend to agree. Rather than feeling guilty or sentimental, I felt liberated.
Last May, we purchased our final piece of real estate - our forever home. $3300 for a plot.
As a child I lived on a hill. Our family home was perched on the urban-rural divide and beyond the farmland to the west, the Tasman Sea stretched and swelled. On a clear day we could see Kāpiti Island adrift on the horizon and sometimes the shadow of Te Wai Pounamu where D’Urville Island reaches out to touch the North. Today my view is a volcano. Rangitoto rises proudly from the depths of the Waitematā as it did violently and bloodily 500 years ago. I have climbed it many times, clambering to the top to stand at the viewpoint and look back towards the Auckland skyline and the Waitākere Ranges beyond.
Views are an inhalation, a pause to consider the possibilities beyond the here and now. I am determined to inhale and keep my eyes lifted towards the view, but for now I turn from it to continue writing my story.
A fundraising walk for MND takes place in Auckland on Sunday 25 February. For more information, or to donate, click here.
