My Beautiful Pain – Not a love story

By Glendon Fozzard

This blog was first published by The Dignity Project in August 2021.

Glendon Fozzard (second row - far left)

Trigger warning: This story contains content about suicidal ideation and sexual content. If you have any concerns, please contact Lifeline 13 11 14

I didn’t know Pain Week existed and couldn’t help but think that every week is pain week for many, many millions of people, myself being one of those lucky ones. The pain within me, a neurological peripheral nerve pain that tries to control me, and some days still wins, is very beautiful to me now, how is that so… I ask myself writing these words?

For over 5 years, it was anything but beautiful, changing every facet of my life.

My beautiful pain, the long days and longer nights wanting it to end, wanting it to stop, fearing that it wouldn’t, those agonizing seconds, turning into minutes of excruciating blackness and breathlessness, crumbling me to the ground, every day and night, relentless, again and again.

Hiding, fearful, sometimes of breathing, moving, talking, living, oh my neuropathic painful friend who acts more the enemy. No Dignity here!

This beautiful pain of mine that was secretly playing games with my central nervous system, wreaking havoc on my fine motor skills, damaging my cognitive function, weakening my resolve and pushing me headlong into those dark horrible days of despair and longing for closure from this torturous existence.

My beautiful pain, all those sensations, driving me on to find a way to cope, the often-used McGill’s Pain Scale seemed to be missing the descriptions, the levels I was experiencing. I took a 15 cm long sewing needle (think sharp and shiny) to my pain management specialist, asking him how it would feel if he pushed, poked and twisted it into his foot, burning hot and connected to electricity, as that’s how it feels to me, obviously he declined to try.

My next visit I took in a large square of office carpet, similar to his practice floor, I stuck thumb tacks in it in random order, you couldn’t tell they were sticking through, to his dismay I asked him to place his hand on it really hard, before he pushed down, I showed him the tacks, he got the point, no not of the tacks, unfortunately.

I was trying to escape this pain, anyway I could, very rarely taking a Panadol my entire life to, too quickly climbing into pharmaceutical concoctions, ‘stronger Doc it’s doing nothing’, and within months I was on the strongest and asking to chop my leg off to take those pains away, as the limit of man-made pills had been reached.

I described my review of all things that could be causing or increasing the unbearable over 200 ‘attacks’ per day. My diet, my movements or lack thereof, repetitive tasks or too long in a particular position or the time of day or the amount of air in the atmosphere or, ok not to that extent, but very bloody close.

My beautiful pain, that comes and goes when it wants, monitoring the length and duration, activities before and after, maybe its dietary effect on these terrors that wake me in the middle of the night. The effect that pain can have on every aspect of your life, everything you do, interacting with others, things of a personal nature be it alone or with a partner is hindered or hampered. Yes, sometimes those moaning sounds have turned to agony, enough said.

I did ascertain after about 18 months the pain had no systemic function I could find, without which it made it harder to find a solution. It was about this time that I realized the most important aspect of chronic pain, indeed any injury, illness, disease or other trauma impacting our lives.

Mental Health, with a strong resolve of resilience I needed to get my mental health strong, fit, trained, better if I was going to be able to provide my children with a father who could still laugh, smile, have fun, guide them through life’s pitfalls.

My cognitive decline, my inability to learn was hindering my ways to find a system to wellness. From understanding and writing formal lengthy Health and Safety documentation, training groups publicly speaking in front of thousands, those days surreal.

My beautiful pain, slowing me down, taking days to read a couple of paragraphs, stuttering and not being able to ‘direct the words’ to my mouth, a delay, that scared me worse than the worst of the pains. No more making or answering my phone, contacts down to less than 10 family and friends from over a thousand.

My beautiful excruciating somatic pain(s), that literally feels as though my flesh, bone, tendons are tearing my foot apart. Those are the ones that make me want to throw up, or perhaps I am just having flashbacks to the movie ‘Saw’– sorry for the graphical.

Hearing that it would not stop even if I had the limb amputated, taking me into a level of darkness, that almost ended my life, in the most undignified way.

Many things and many people prevented me from taking that escape from this neurological roller coaster. The realisation, the knowing, knowing that the good times, moments, memories, smiles, laughs, loves, learnings will show themselves again. Light always follows the darkness.

You all know the days I refer to, those days when your inspired to enjoy life, those minor or major interactions of connectedness to other humans, empowering acts of kindness and the exchange of unconditional gratitude’s, which at times is as simple as a passing smile, yes, those moments.

Looking back now, the most important ‘thing’ that made me accept and befriend my pain, it was mine, it is mine, and I am putting it to good use these days.

These beautiful days, these beautiful days full of beautiful inspirational people I am blessed to know, without my pain, the beauty these advocates contain and share I would not have known.

If you survived all the way to the end of this painful novel, yes that pun very much intended, you are one of the beautiful people who can help bring a dignified way of life to so many, and it will be my pleasure to assist us any way I can.

My advice to the bearers of pain… befriend it, control it, use it for good… find a way.

Thank you for your valuable time, the most precious gift of all.

Ps- I should add, it didn’t just happen, I found what I needed to cope, it may help others.

My Painless Mental Tools

• Meals – Plant Based Organic
• Meditation – hard to master, yet harder to leave that realm when you do, parasympathetic breathing
• Mindfulness – tasks, projects of interest, use old and learn new skillsets, focus – Neuroplasticity, learn, learn, learn
• Movement – outdoors, in natural environments, saltwater, fitness, move, set time and program, remain active throughout the day however you can
• Medication – Natural only
• Music – motivational, emotional, energizing, relaxing, calming