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My Story: “The person I know is not there’’

ME is a debilitating condition with a wide range of symptoms, often brought on by a viral infection. Kathryn Barton details how this cruel illness has totally transformed her life.

My Story: “The person I know is not there’’

I remember well the day I broke down in front of my open wardrobe. The intensity of the moment shocked me more than the moment itself. I knew what was in there.

I’d packed up all my sharp, well-cut suits. Gone were my business shirts with their no-nonsense narratives; gone, too, were all my good shoes. I gave them all to Dress for Success, the charity that helps disadvantaged women get back to work. Oh, the irony.

I kept the fine, taupe tweed with its skinny belt and swing skirt. And the shoes and bag that were so smart – teamed together they had me unofficially voted “Second-Best Dressed” at the office. I remember the glow that came with that comment. I’ve kept this one outfit aside for the funerals I can stand upright at long enough to attend. What a cheery thought.

If I ever need this outfit again, I will find it hard-up against the back of the wardrobe, where I can’t see it. But, statistics show that, in all probability, I – Ms Over-Achiever, A-Type Personality – won’t ever dress like that again. I will never be back working in a big job earning a hefty six figures and giving more than I physically and mentally had to give; nor will I ever finish that second Master’s degree, with only two subjects to go.

I was operating at 120 per cent and thriving. Now, the latest test for myalgic encephalomyelitis (ME) shows I am functioning at 40 per cent of normal capacity. Fancy waking up every day, with sleep being the only escape, to the same news delivered through the blanks drawn by your addled brain; your disturbed vision that sees little black things flying into your peripheral view; the crawl to the loo and back to bed; the passing out on standing; the persistent headache and swollen lymph glands; the sensitivity to light and noise; the hopelessness; the inability to walk without a drunken gait, or find the right word or the embarrassing doubt over their meanings (not a good look for a journalist); and the muscle and bone aches.

At least I now fully appreciate the difficulties faced by my parents in their mid-80s. We have too much in common. I know things I shouldn’t know for another 30 years. Did I mention the extreme fatigue? Did I mention the confusion? The faux pas? The tactless comments? What about the inability to concentrate on one thing for longer than a minute (that’s being generous). And the grief. After 50 years of being someone else, the person you know is no longer there.

I remember how I used to knit. Oh, the joy of churning out spectacular garments for gob-smacked family and friends. It took me two years to finally give up on the intricate cabled jumper I started for my brother Gerard’s 50th birthday. The same one I’d made three times before. He’s happy with his two-purl, two-plain rib affair. But it hurts me to look at it.

Forty years of knitting – my first life-long love – reduced to simple beginner stitches. But I do try. I give myself 10 attempts, before putting a sad version of a new item at the bottom of the pile, barely begun. Or maybe that’s the old me and my outrageous perfectionism trying to push me on?

Three-and-a-half years now I have been battling disbelievers and cynics regarding how sick I am because I look so fabulous from all that sleep. I have seriously tried to shake ME, but that’s a woefully big call when the changes to body and brain, mindset and intellect, hopes and dreams, career and future, are to be found at a very base cellular level.

I have damaged mitochondria, the energy-producing organelles that convert nutrients into the get-up-and-go propulsion in normal bodies (I found that on a children’s biology website; couldn’t process the academic ones). I have 40 per cent of my brain membranes inflamed, a symptom also detectable in the spine. It’s a neurological disorder with so many symptoms, their underlying causes screaming for help.

Social expectations

The loneliness and isolation – they’re new to me. Social media is my friend. I can look at what everybody else is doing – where do they get the energy, or the money? I have very little of either. I’ve been all over the world, vicariously. I’ve watched Facebook mates’ babies grow up, laughed myself silly at the funnies, and cherished the private messages of support. I post like mad – hoping to stay relevant among my many busy buddies. No photos, though. I’ve lost too much weight. Even my signature dimples have gone.

I thank God daily for such an unbelievable husband – a rare gem, indeed. I cry silently for all he has lost. I know I’m the cause of his isolation, too. What wife has to push her husband to see his mates at the pub, only to have him return under two hours later?

Over the years, the invitations we used to receive have dwindled due to having to decline so often. Poor Mike. But I do try – even if it means sitting on the edge of the bath to dry myself, lying down to do my hair and make-up, then getting up and in the car only to come home an hour later.

But I have the firmest of friends – some going back to kindergarten – and a fabulous set of siblings. These angels pick me up (literally and figuratively, since I can no longer drive), take me out, surprise me with secret destinations, show me a good time fuelled by several double-shot macchiatos with three sugars – a latte-no-sugar doesn’t cut the mustard these days – and a covert supply of No Doz. They ring, they text, they phone and make me laugh, they reach down with loving hands and pull me up out of the mire, determined I will not go under. One dear buddy – Heather – clambered over garden furniture to get to the second level of our fortress of a house and broke in to the spare room – my room now, sadly – and sat on the bed as I slept. I hadn’t answered texts or phone calls. She lives just shy of 80 kilometres away! These are my friends who can still see moments of my past self, even when I can’t.

There are many, though, who’ve dropped me, preferring the old me. I don’t blame them. I prefer her, too.

Did you know that people with ME are 15 times more likely to commit suicide?

No, we don’t have Yuppie Flu, or the lazily named Chronic Fatigue Syndrome (the last word indicative of the cryptic nature of an illness dumped in the too-hard basket), nor are we malingerers. Malingerers! We don’t have a psychiatric issue, though therapy does its best to keep the black dog from the door aided and abetted by increasing doses of Zoloft, nor do we have answers from the myriad doctors, naturopaths, herbalists, chiropractors, health-food stores, books and websites, nor many clues from other sufferers battling up to 55 wildly different symptoms. I am lucky to have only 40.

Occasionally, like when I was tying a shoelace and had one length in each hand and did not know what to do next, I lose it.

Big pharma can’t be fussed. With no magic pill, there’s no interest. But we try others’ drugs – Ritalin that’s reserved for ADHD children; the drug they give bed-ridden geriatrics to lift their mood: and antiviral HIV/AIDS medicines – which only intensifies the feeling that doctors want you gone from their surgeries. They, like us, will try anything – up to a point.

Then it’s solo-sailing ahead. I remember how sick I was in Spain, under so much pressure being the only journalist travelling with 524 teenagers to World Youth Day in Madrid in 2011. I remember how I ignored all the symptoms of a flu – that upgraded itself to glandular fever – and pushed, and pushed and pushed through, to attack my crushing workload. The job I loved more than almost anything else.

It was the end of my health, my dreams, my future, my career. ME made a mockery of my three university qualifications and the high-distinction average they brought. My testamurs are out of their frames and in the bottom drawer of the filing cabinet in the garage. They are in good company. My many awards for journalism, magazine editing and media campaigns are there, too, along with the book that carries the student paper I wrote that the university published in its academic-only publication, Asia-Pacific Media Educator.

If the old me ever comes back to visit, how wonderful a day that would be. But I’m not at all confident. I imagine it would be like being loaded into the car as a kid and being told to stand in front of a fading grandmother/aunt/uncle/family friend as you try so hard to equate the person before you with who it was they used to be. So on second thought, please don’t come. But know that I miss you, like I have never missed anyone before.

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One Comment on My Story: “The person I know is not there’’

  • katewillson
    March 6, 2016 12:27 pm

    Kathryn Barton you are amazing. With all those obstacles, you can still write a truly brilliant piece that moved me to tears. The disease can’t take way the essence of you, someone with an extraordinary talent for putting words on paper. Thank you for the reality check. I hope a miracle occurs for you and wish you the very best xo

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