I was sitting on a bus in Turkey fumbling to show the wide-eyed busboy my dolmuş ticket when I realised I couldn’t make a fist. The joints of my knuckles felt tight and sore, but I was soon distracted by the sights of Fethiye.
I’ve had severe carpal tunnel syndrome for over half of my life now – I can’t feel my thumb, my pointer or my middle finger on both hands, as well as the top halves of both of my palms. It didn’t happen overnight: I started feeling the tickle of pins and needles bubbling at the tips of my fingers just after my 12th birthday. I’d jam my puffy little digits into the base of my palm (where my compressed median nerve connected my arm to my hands) and marvel at the jolts of energy that transcended up my rude finger. Today when I finger the same concaves at the base of my wrist, I feel nothing but gloom and anger.
I started feeling the tickle of pins and needles bubbling at the tips of my fingers just after my twelfth birthday.
Carpal tunnel syndrome (CTS) is a relatively common condition in a world full of busy-bees: . For many, it means being woken up in the middle of the night with tingling hands. At this stage, early intervention can usually nip the condition in the bud. But I somehow ended up falling into every crack and crevice of the medical world. It took me 14 years to find someone who was willing to listen.
While I was growing up, most of the medical world blamed CTS on repetitive hand movements. It never made much sense to me though – I was 12 years old. I didn’t even play video games. My father had had surgery for his CTS, and it felt like all of the adults around me saw numb fingers as my inevitable rite of passage. After all, within the innocence of the 2000s, most of us trusted our doctors with our whole hearts.
When I was 18, patches of my fingers lost feeling. I took my case to my new university GP, who (usually) listened to me. She palmed the numbness off as anxiety and wrote me a script for Zoloft, an antidepressant that left me feeling like a zombie. Tired of being poked and prodded since childhood, I tucked my worries into the back of my mind and tried not to think about my hands.
She palmed the numbness off as anxiety and wrote me a script for Zoloft, an antidepressant that left me feeling like a zombie.
But you can’t avoid your hands. They’re there in front of you everyday – jumping in to help as soon as you leave your warm bed. The elephant in the room is apparently unavoidable if it’s sitting on your forearms. After that bus trip in Turkey, things never felt the same. The slippery slope had begun.
One morning towards the end of our 18-month trip I woke up busting for the toilet. I jangled, twisted and pulled at the door handle but I couldn’t open it. I swelled up in a rage and punched the door, waking my partner up and pleading for him to twist the doorknob so I could go and relieve myself. It was difficult to explain to him that over a decades’ worth of emotions were seeping out of every pore in my body. The inevitable had happened – my hands were botched – and the weight of that crushed my heart.
It was difficult to explain to him that over a decades’ worth of emotions were seeping out of every pore in my body.
When I finally received my ‘official’ severe CTS diagnosis earlier this year, the neurologist was floored at its progression. “Why on earth are your hands like this at 26? Why did nobody help you?” he pleaded with me. I was lost for words. I didn’t know. How had I complained of worsening numbness for 14 years to a handful of different GP’s and specialists without receiving some sort of help? What exactly had happened here?
The nerves in all three of my affected fingers – on both hands – were dead as doornails. They would never be back. In the instant the neurologist told me this, I mourned my daydreams of recording songs I’d written on my guitar and feeling my partner’s skin with my fingertips.
Today, I have a lot of trouble using my hands. I usually can’t prepare my own food (using a knife is scary), I barely have enough strength some days to hold pots and pans, and I usually have trouble with locks, doors, car boots, picking deliveries up from the post-office, shampooing my hair, carrying the laundry basket, typing, feeding my cats and changing the channel on the TV remote. Sometimes I even struggle to wipe after going to the toilet. It’s true that some days are better than others, but navigating life is always a little more difficult now.
I’m finally about to book myself in for surgery. I’ll be flying to the opposite side of Queensland and paying over $10,000 to have the median nerves in my wrists released, because the waitlist for orthopedic surgery in my local city is around 18 months. Medicare should be , but I feel nauseous about the idea of emptying my savings account to pay for a medical treatment I should have received a decade ago.
I feel nauseous about the idea of emptying my savings account to pay for a medical treatment I should have received a decade ago.
Sometimes it all feels too much for me: I’ll sit on the toilet calculating potential costs, occasionally wondering how long I’d have to wait to get bionic hands. Maybe I wouldn’t even need the surgery? What if I paid thousands of dollars and found, like many others, that the surgery hadn’t worked? I’ll usually end up flushing the toilet with tears in my eyes.
Some days it’s almost too easy to crumble into a soggy, weeping mess. But other days, I take comfort in using my puffy little numb hands. I look down at them and marvel at what they’ve led me through. I count my fingers like tiny friends, and some days I pop amber and lapis lazuli bling onto my sorest fingers. This decade of dismissal was rough, but I’m in good hands now – my very own.
Imogen Kars is a freelance writer. This article does not recommend or endorse any particular treatment. Always seek advice from your doctor or medical or health professional.
