• We For Women

E.T.'s Story


Flourescent Creature by Kirsten Tingle

I always did my own thing, impetuous, intuitive, self-centred, until I got sick. Acute tiredness is like a dark tunnel. Think of the worst flu you ever had. You’ve just got over awful days of razor throat, awake all night with choking painful coughing misery, and for a week afterwards you lie on, fatigued and flaccid, struggling to lift your head up from the pillow. Only you didn’t have the flu part at the start. You’ve slid downward, over many months, energy diminishing, trying to kick-start yourself, every day a bit more difficult, into this utterly fagged-out, mind-clouded, zombie state. Mentally shut-in by total lack of energy. Acute fatigue is not just physical it seeps into your thinking, like smoke’s filled your brain and like a smoked-out, drowsy bee you only want to sleep. You sweat and dream and toss through nights. You sweat and fear and droop through days. Sometimes all of you aches. And if you catch a cold, you need some help until the weight of illness lifts a little. The first doctor said, Acute tiredness? Anti-depressants, three times a day. I was depressed, but from my problem of exhaustion. Right or wrong, I tipped them down the toilet. The next doctor said, It’s probably post-viral fatigue syndrome. Be patient. It will pass. It didn’t. Third doctor said, It’s probably M.E. My son has got the same. Take this new treatment, Immunovir. It will boost your T-cells. I took them, conscious this was brand new expensive medicine, and felt no better. My parents brought me home to Glasgow. Rescued to my childhood bedroom. Life on hold. Protected from the real world. Seven years of living with me and their worries for me, hoping light was waiting at the end of this mysterious illness-tunnel. Seven years like waves creeping and lapping up the beach, until I reached full tide, and life turned bright and wonderful again. Effort available. Thought processes unmuffled, clean and clear. But going carefully, because who knew what that was all about or if this was a false recovery? Fast forward thirty-seven years. We host my father’s ninety second birthday. The lounge is crammed, nineteen of us round the jammed-together tables, borrowed extra chairs, and food is going down appreciatively, and someone asks my niece how she is feeling. She says, If it hadn’t been for dad, who would have known a red ring round a bite means Lyme’s Disease? Without dad bossing me, I wouldn’t have insisted on being tested. Wouldn’t have got anti-biotics. I was going down a scary tunnel but then all my energy returned. I ask about the red ring? Yup, on my ankle, tick bite. Its called a bull’s eye rash. If you get that you’ve probably got Lyme’s. A lot of people don’t know to get tested. But if you don’t get treatment early you can be ill all your life, or even die. So cheers dad. We raised our glasses to my brother. *‘Lyme disease was first identified by a person called Dr. Allen Steere in 1975 in the US. There was a severe outbreak of rheumatoid arthritis in juveniles in a place called Lyme in Connecticut. These families were left undiagnosed and untreated for years during the 1960s and 70s. If it wasn’t for the persistence of two mothers from this group in Connecticut, Lyme disease might still be little-known even today. These patient advocates began to take notes, conduct their own research, and contact scientists.’ Well done Connecticut moms. It is late when everyone departs. We clear the tables, but we leave the kitchen in a mess. I lie in bed and cannot sleep. I’m thinking back to being twenty seven years old. There I am. Lying in that lumpy bed inside my tiny Devon flat, woken from the worst dream I have ever had. I’d shot my mother and my father. Woke up wailing then tried to get back to sleep to get back to that dream and change it so it never happened. Next day someone said to me. You’ve got a red ring on your wrist. That’s ring worm. It’s infectious. You should see a doctor. And I did. I used the cream prescribed, rubbing it on my wrist until the rash grew outward, fading as circumference increased, then disappeared. My dreams stayed rampant. And a tiredness, over several months crept in and made itself at home inside my head, my muscles and my bones. I moved to Manchester fresh out of college, desperate to build a teaching practise, but I failed. But here’s the thing. I had decided my condition was a self-inflicted illness. I decided I had run myself into the ground. The waitressing, the gardening, the house-cleaning, the school cleaning, course secretary. I felt contempt for myself for thinking I must pay-my-way through student years without accruing debt. Why had I not just taken out a loan? My health a victim of my pride, a victim of my own wilful stupidity. I got better around the time my undiagnosed illness was just becoming understood in USA. *‘In 1981, a scientist who was studying Rocky Mountain Spotted Fever (also caused by a tick bite) began to study Lyme disease. This scientist, Willy Burgdorfer, found the connection between the deer tick and the disease. He discovered that a bacterium called a spirochete, carried by ticks, was causing Lyme. The medical community honored Dr. Burgdorfer’s discovery in 1982 by naming the spirochete Borrelia burgdorferi.’ As I lie in bed thinking of the messy kitchen, I’m thinking, imagine if back then as I tossed about in my reclaimed childhood bed, I’d known what was wrong with me? Would it have helped? I have a huge imagination. If I’d known that many people never do recover and some die from Lyme’s would I have been much more afraid? Would that have lowered my expectations, maybe limited my full recovery? In my ignorance, I eased back to good health, but since then I have always taken care in case I overdid things and tipped back into that ghastly state of incapacity. Like tonight, downstairs those dirty glasses lined up on the counters, stacks of plates on every surface, which I did not clean in case I over-tired myself. I’m thinking how amazing medical advancement has allowed my niece to swerve a nasty and debilitating illness. I think, I wasn’t stupid after all. I was just bitten by a tick that carried Lyme’s Disease. How do you apologise to yourself for false accusation? For misrepresenting yourself to yourself for almost forty years? How do you unpick that false narrative? And if you do, who do you find behind the misdiagnosis? Next day, kitchen still a mess, my computer screen says, Lyme’s is the ‘most undiagnosed illness in the world.’ *‘In 2012, Lyme disease was included as one of the top ten notifiable diseases by the Centers for Disease Control and Prevention (CDC) USA.’ In the UK, doctors are being trained to look out for that red rash and its implications. And now we’re looking out for Covid symptoms. Covid-19 lockdown time reminds me of my earlier shut-down years. Forced retreat into my inner world changed me. Back then I fell to writing stories in my head, or, if I had the energy, on paper. I realised how much I’d always loved the library. How much I loved a story. How I had stories I could write. I realised how I’d neglected this important passion, far too busy chasing other dreams. I brought a vital part of myself into the light. And isolated, feeling left behind, battling the fear that I might not recover, in that Lyme’s tunnel, I grew up. I had the time if not the energy to see myself more clearly. I learned a vital lesson. I needed other people. My wilfulness was so back burner it could not prevent me from accepting help. Which I would not have done except for Lyme’s. That letting go into my parents’ care again, and how lucky was I to have their unconditional support, that was a growing up, a necessary step I’d missed, that other people are important too. In lockdown I feel comfortable with restrictions. I know this tunnel. It is hard. For some it will be fatal. But I promise you, good things grow here too. Patience. Gratitude. Epiphany. Humility. Love. More information on the *Bay Area Lyme Foundation: https://www.bayarealyme.org/about-lyme/history-lyme-disease/ Is there a key moment of your life you would like to share? The story I'm submitting is about Lyme's Disease which I caught before it was an understood illness. I learned to accept defeat and failure, but I thought it self-inflicted. Until 38 years later when I realised it was Lyme's I had had. That I needed to re-write myself. Not victim of stupid over-working on my part. But a tick-borne sickness. Without eight years of illness, however, I would possibly have continued being the wilful, selfish person I was at twenty seven.

How do you reflect on the journey that brought you here? Judging yourself and judging others is a fool's game.

What is your biggest fear? Intolerance. In myself and in others.

What is your biggest achievement and how did you get there? Enjoying a partnership for 27 years, and seeing our children, grown-up, out there doing their own creative stuff.

What would you say to the 10-year-old you? Life gets better and better even when it seems to be getting worse.

How would you describe yourself? E.T. was born in Glasgow. She joined the WRNS at 17 to be a helicopter mechanic, then retrained in Devon to become a teacher of the Alexander Technique, She is married with two grown-up kids. Recently, turned 60, she is become a student, finally embracing higher education. And has also discovered Chai which is filling her with aromatic joy. She likes music, especially if it has a powerful bass line. And loves hill walking with a friend.

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