Hello and welcome back as we bring you the penultimate 2021 blog of season 2 of our #SeeMeHearMe campaign. Today, we are delighted to share with you a blog from our good friend and spiritual warrior, Siobhan Argyle, (known by many as Shivie).
In recognition of World Diabetes Day 2021, we’re collaborating and celebrating this incredible breakthrough with this powerful personal story which shares the pain and inspiration of an amazing human and her battle with recovery, but also, that this year marks 100 years since the discovery of a treatment that has saved millions of lives around the world – insulin.
If you would like to share your story with our healing community, then please contact Derek at email@example.com or Felicity Douglas on Twitter @FelicityDougie.
In the meantime, over to you, Shivie, the floor is all yours, and with immeasurable thanks and gratitude for sharing your gift so freely – from all of us at Epione!
‘Music is the language of the spirit. It opens the secret of life bringing peace, abolishing strife’ Kahlil Gibran
My fingers understood piano keys from a young age. They knew how to interact with each other to create sound and song, harmoniously and effortlessly. My memory would photograph a tune and instinctively I knew how to play it. I never questioned this, I never felt the need. It is only now that I understand the significance of that rhythm and music present in me, it is only now that I realise the extent to which music has always been my regulator, my confidant, my comforter and my guide.
Life as a child was chaotic. My father had Type 1 Diabetes. The diagnosis of Type 1 Diabetes was hard for anyone to manage in the early days and my father was no exception. He suffered from severe hypos – instances of low blood sugar – that resulted in behaviour so erratic, frenzied and at times violent, memories of which are etched clearly in my memory. Nights were sleepless, anxiety-filled passages of time where the unexpected became the expected and where the saving of my dad’s life became a regular occurrence and a scary one at that.
At age 11, life was far from easy. A first holiday abroad brings a host of unwanted memories, even now. Suffice to say, I ended the holiday so ill I was barely conscious by the time we landed in London. I remember one brief moment of consciousness, a doctor’s worried and hushed words panicking that I would die if they couldn’t figure out what was wrong. I didn’t really care.
We journeyed back to Glasgow and from there everything changed. I was ill for months. I was ridiculously thirsty all the time. I couldn’t stop eating but continued to lose weight. I was exhausted. My legs would cramp to such an extreme where I would be unable to walk. I knew I was ill. I also knew what was happening. I didn’t need an official diagnosis – I knew that I was facing a diagnosis of Type 1 Diabetes and the fear and terror that came with that is something I can still recall with frightening ease.
The months after diagnosis I lost chunks of my hair (never to grow back), I suffered horrendous muscles spasms in my back that rendered me almost incapable of walking, I was physically sick virtually every night, I suffered from skin infections and tooth abscesses where the pain was searing and sleep absent. I never told anyone. I lived in abject terror. I constantly believed that I was going to die – the thoughts were crippling. Still I said nothing.
Hospital visits became a never-ending source of fear: ‘you realise you might lose a leg, you might go blind, your kidneys will fail…’. I was terrified. Utterly and completely terrified and I felt totally alone and isolated. I would hide away lest anyone figure out I had diabetes. The shame was crippling and I could find no one to hear me and understand those feelings. I was banished to cupboards and toilets to inject insulin, thus the shame grew and I would often miss the injections – it seemed easier that way. My weight began to rocket and with that came the insults, the hurtful remarks, even a punch in the stomach by a teacher to prove the point. More shame, more guilt so I stopped eating. To this day I only have one mirror in the house. I cannot bear the reflection. Not in a mirror, not in photographs, not anywhere. I struggle to even see my name written in a box on a computer screen. The disquiet I feel is thundering.
I was told I was going blind (I was not), I was threatened by a doctor who told me I would die due to my attitude. The same doctor wrote to me several times to reiterate this point. I fully understand the ways in which you can scare someone to death – it doesn’t take much. This has been my story all of my life. I can feel the tears run down my face as I type this; my fingers are playing a different keyboard and it is hard for them to do so. It does not come easy to me.
I had a saving grace though that I held close. In moments of doubt and fear I had a piano, a guitar, a flute. I could sit for hours understanding how music worked and knowing that music understood me. Through music I could tell stories, write poetry. I could cry, legitimately, I could smile and I could be me, without judgement and without fear. But only to me. I knew I was not a performer. ‘Not good enough’, ‘destined to make nothing of my life, to be nothing’ (such were the words of teachers who should have known better). Their words haunt me to this day and it takes every ounce of energy to set them aside.
So here I am, all these years later, trying to reclaim that which was lost: my sense of self, the original part of Me who could delight openly about the joy music brought and who could share that with others. The Me stepping into a territory that is bewildering and unfamiliar but intuitively feels like the way to go. Lockdown brought about an extraordinary experience for me in the form of songwriting. I have no idea what happened, it just was. Perhaps driven by a burning desire that if music kept me alive over the years, then it was important to share this with others as a means to connect, to laugh, to cry and to just be.
I hold close the words my sister gave me on a slip of paper years ago: ‘you are safe, healthy and loved.’ I believed her then, I believe her now. With that as a constant in my mind, and with music, I can step into the Me that was lost and hidden for so long and although difficult, it is worth it. I choose to tell my story, not for sympathy but so that others with diabetes know that they have a future and they have health, and so that those who care for us know that we want to live, to breathe, to see, to grow and to flourish. They are the gifts music has given me – that is worthy of celebration.