Page 4: Loss
“ I’m losing hope. I’m losing my way, my purpose, my pride, my power. Addictions eating away at my liver, despairs seeping into my skull. I’m fighting to keep faith close, believe one day I’ll overcome this challenge.”
Loss
January 2018
In that moment, I knew, I had to let go of all I’d been fighting for. I lost my love, my health, my wealth, my lifestyle, my dog, my independence. But I was fortunate, I had family. At the age of thirty-five, I relocated. I had to live with my parents for the first time since I was sixteen. I used the few fleeting fragments of energy that remained to push myself, to try and create a new path, adapt and realign my life. I began to immerse myself in writing. It felt like one of the few realistic options I had left. I could write from my bed, from the place where illness enforced me to spend the majority of my waking hours. I could start when possible, stop when needed. I wondered, could I write my way back to financial stability and regain my independence?
I’ve pushed hard, even when I’ve barely had the energy to lift my hands to type, even when my thoughts feel paralysed and I can’t write fifty words an hour. But my mind’s become bruised, repeatedly kicked by the same question. How can I become a writer if my brain’s maimed and if I’m rarely capable of writing a thousand quality words within a week? If I can’t write, what else can I do? I can’t work if I can’t withstand physical or mental exertion. Right now, I can barely push through a few hours of mild physical activity in an entire week. I’m quick to tire, slow to recover. Social situations still overwhelm me, the chatter, the noise, the mental stimulation, it often becomes too much, too intense. I struggle to find the right words when I speak and spend the majority of my time feeling as if my brain’s been anaesthetised, numbed beyond fatigue.
I’m losing hope. I’m losing my way, my purpose, my pride, my power. Addictions eating away at my liver, despairs seeping into my skull. I’m fighting to keep faith close, believe one day I’ll overcome this challenge. It’s one of the few threads that’s kept me safe from my darkest thoughts. Without faith, without family, perhaps I wouldn’t be here to write these words. Faith’s fantastic, but it’s not enough, I need a purpose, something bigger than myself.
February 2018
I’m not writing these words for sympathy, but with honesty. Suffering’s not the story I’m here to tell. I’m aiming to become more, for myself, for others. I’m writing for accountability for my actions and to empower myself to create a better future.
I need to address faults, find reasons for failures, reflect on adversity, but never forget that despite my disease, there are circumstances to be thankful for. At present, I don’t suffer the paralysis that’s caused by the extremes of the illness I endure. I’m grateful, it’s not contagious, it’s rarely fatal. I have a close friend, a great family. I don’t live in poverty, a war zone, or have to fear my safety every single day. I am not a slave. These are true blessings. But, it would be dishonest to deny that every day grinds away at my mental resolve.
Endurance athletes and extreme adventurers often encounter “the wall” when they’re pushing themselves to their limits. They define it as the experience of immense mental and physical barriers created by extreme fatigue. It comes to all athletes within their most challenging moments. It’s a test of faith, endurance and mental resolve. A challenge to push beyond perceived boundaries. A barrier that beckons only two options, fight or fail. I faced this when I was my fittest, healthiest self. I enjoyed the intensity of the challenge, relished the achievement of expanding my limits, after all, they were merely temporary. Part-time barriers present challenges, permanent boundaries become disabilities. Nothing I’ve experienced before comes close to the depths of my condition. Myalgic Encephalomyelitis.
Myalgia: muscle pain. Encephalomyelitis: inflammation of the brain and spinal cord. It affects the central nervous system, the joints, GI tract, lymphatic system, and blood. M.E. is renowned for inducing debilitating fatigue, but it reaches far beyond a single symptom — unexplainable pain, bone-deep discomfort, overwhelming exhaustion, diminished mental ability, depression, nausea, hypersensitivity to sound, touch, temperature or light, intensified sugar cravings, hallucinations, insomnia, memory loss.
Continued in next update.
Thank you for reading.
With warmth,
Davey