More than lazy
Would you believe you were lazy if you grew up hearing it all the time?
Although I always enjoyed our family outings as a child, I never looked forward to the walking part.
I liked to lead the way and my position up the front provided a decent angle for my parents to observe my wonky walking. They would often tell me to concentrate, and I’d do just that for approximately five minutes (sometimes less) before my concentration would lapse; allowing my wonky walk to return, leaving my parents exasperated.
I can still hear the shrill tones of my parents as they called out to me. ‘Don’t be lazy JL, keep focusing on your feet!’
The awkward step in my gait was an issue anywhere we went on foot. I was confused and angry – why couldn’t I walk like every-one else my age? I couldn’t understand why everything seemed so much harder for me. Why did I have to concentrate so intensely on walking straight when others didn’t appear to? Was I just lazy?
The answer was even more complicated than I could’ve guessed. The symptoms I was experiencing belonged to a rare, genetic, neuro-muscular disease but no-one knew that back then.
I never blamed either of my parents for thinking I was lazy, how were they to know what was really happening to their eldest daughter? Like most people, they had no idea what a genetic neuro-muscular disorder was, they didn’t have a single clue they were both carriers of the damaged gene attributed to FA; there was no family history. My own faulty FA gene had been lying dormant in me since birth and at eight years of age had started to rear its ugly head.
It wasn’t long before Mum started to wonder if something other than laziness was at work in my body. She discussed her doubts with my teacher, Miss Hess.
At the time, Miss Hess dismissed Mum’s worries and told her she was just an over-protective mother, and I was in fact, simply lazy. I was playing netball for the local under-tens on Saturdays and Miss Hess was the team coordinator.
Mum had enrolled me and my sister, Sam, in netball (probably hoping to encourage my development regarding movement) and I hated it – I didn’t mind the social aspect of being part of a team, I just couldn’t comprehend why playing netball tired me out so much compared to every other kid on the court. Maybe, I thought, they just hid their exhaustion better than I did.
Usually after the first quarter I’d lose concentration and sit on the court as the game carried on around me. I played wing attack – which seemed ironic – as I hardly ever ‘attacked’ anyone, preferring instead to let the ball whiz past overhead without even so much as an arm raise.
Other parents often urged me on from the sidelines to get up, to continue the game with the rest of the team. They didn’t seem to understand how exhausted I was; my legs would start trembling and swaying on court, the desire to sit down was so strong, all I wanted was to release the tension building in my legs. The game disappeared and so did every single parent; I’d sit quietly in dark oblivion – not caring much about anything at all – until our coach came to encourage me into position after each goal.
When I reflect on those days I can’t help feeling for Mum, she was as confused (if not more confused) than I was, wondering if her firstborn had a legitimate medical excuse for being so unmotivated or if she really was just lazy. Every time my mother sought a second opinion she was shut down and her worries were credited to her maternal nature.
Mum pleaded with Miss Hess to let her come in and help with fun class activities consisting of games with tennis balls – she was trying to work out what, if anything, was wrong with my hand-eye co-ordination.
She took me to Brisbane to partake in some human movement studies – basically physio students from the local university threw a lot of tennis balls at me, watched me play on their jungle gym playground and made me write for them – simple stuff and when they were finished, they told Mum not to worry, I was completely normal, just a late-developer.
That was my first but not my last experience of being poked, prodded and misunderstood.
In the eighteen months that followed my symptoms quietened down and could just as easily be written off as ‘klutz’ behaviour. But by age ten, the symptoms reappeared with a vengeance.
Walking in straight lines became harder and harder, zig-zag steps took over, uncoordinated hands reduced my writing to slanted words and wobbly letters; completing small and fiddly tasks like sliding on zippered jeans, doing up a buttoned shirt, or even putting on jewellery became excruciatingly difficult and usually required someone’s help. My parent’s fears resurfaced but struggling with their lack of experience, they didn’t know where they should turn.
Mum took me to our GP, who listened patiently and tested my fading reflexes. At the end of the consultation, while I was building houses with wooden blocks in the waiting room, our GP told her there was nothing physically wrong with me. Again, Mum was just being over-protective and worrying about nothing.
Celebrating Christmas as an eleven-year-old was fun and that year was even better – we’d flown to Melbourne to be with family. We spent Christmas day at my uncle and his girlfriend’s pub in Fitzroy.
Around lunchtime our hosts announced they were getting married in twenty minutes in the park across the road. The relaxed atmosphere in the pub switched into absolute bedlam. I ran around babbling excitedly with my cousins, feeding off the eager anticipation which had taken over. Us girls gathered an assortment of flowers from neighbouring gardens to scatter along the make-shift aisle.
I was so physically spent after the ceremony and my untidy symptoms really came out to play.
Later one of my aunts mentioned my uncoordinated walking to Mum and said she thought that maybe I’d been drinking alcohol instead of lemonade, but Mum had absolutely no time to process this comment as we were constantly surrounded by family, and something was always happening.
A few days later, we drove an hour west out of Melbourne to stay with our three cousins and their parents for a week. The holiday house we rented was mammoth-sized (or so it seemed to us kids), five storeys tall, backing onto bushland.
Not the most ideal setting for someone with a walking problem.
I fell a lot, not only in the house but outside as well. We loved exploring the surrounding area – often I’d come back with a scraped knee or elbow, and I was getting angrier and angrier every time I tripped over nothing.
On that trip, all four adults agreed something was not right with my gait. Together they discussed which specialists my parents should seek for counsel and when we arrived home the specialist visits began.
I remember Dad explaining to me why all these special doctor visits were happening. ‘We want to understand why you seem to be having such a hard time with those troublesome legs of yours, so we’re going to be visiting some doctors who can help us get some answers.’ He gave my knee a reassuring squeeze. I wasn’t worried about what the doctors’ might find; I was relieved my parents were starting to understand my struggle. Maybe I wasn’t just lazy after all.
The first specialist we saw was a local podiatrist. She seemed perplexed by the slight curve evident on the soles of my feet, even more confused when she observed my off-centre balance. Her decision was to refer me to a physio who had more experience with people suffering from walking difficulties.
The physio worked with me for over an hour, repeating a lot of what I’d already done during those human movement studies (only now my symptoms had progressed to the point where it was plainly obvious something was wrong). After seeing me walk, run and catch balls he declared something was not quite right with my upper and lower limb movements, but he wasn’t sure what. He noticed I favoured one side as I walked, which indicated to him that perhaps I was suffering from some sort of spinal problem. He recommended a well-known orthopaedic physician to look at my spine.
My parents were understandably worried, I can only imagine how Mum felt; part of her must have been relieved she wasn’t being told she was just being over-protective yet again, but another part (maybe an even bigger part) wished it was in fact only in her imagination and there wouldn’t be anything wrong with me.
I wasn’t worried at all. I just got on with my eleven-year-old life.
My parents were another story; they’d usually go outside and sit on chairs together in our front yard to talk. Mum normally wound-up sobbing into Dad’s shoulder.
During the consultation with the orthopaedic physician, he mentioned I did have a slight curvature in my spine, which suggested mild Scoliosis. Apart from that fact, my spine appeared very healthy according to the x-rays, he couldn’t find the cause for my erratic movements which indicated that perhaps the problem was neurological.
My parents looked worried. The doctor looked sympathetic and then referred them to a private paediatrician.
The paediatrician listened as my parents explained our journey so far, and he never took his eyes off me. I’d been sitting at a low-set table filled with toys in the corner of his office playing while they conversed. He’d been noting my movements from the get-go.
When they were done, he got me to walk for him. Then he conducted a thorough examination, checking reflexes, limb flexibility and for any visible birthmarks. He told my concerned parents that my unsteady gait was like another young patient he had with Friedreich’s Ataxia (a disease they’d never even heard of) and to know if I had it, I would need to take a blood-test. Then a neurologist would be able to confirm or deny whether I was suffering from FA.
Simple, right?