For many years I put a brave face on my pain and bodily dysfunction; I denied my disability, ignored my fatigue and I brushed over my emotional and spiritual issues. It was easier to deny them in a quest to try to function as normally as possible in order to get on with the business of my life. Yet, this became harder and harder, and I used every ounce of my being to present a façade of being ‘normal’, but the reality was that I was slowly slipping out of sight. My disconnect with myself, and my reality, had reached new heights and I just wasn’t able to put on a smile any more.
Over time, with my medical issues expanding and my world contracting, I had started to fade from view, feeling like one of the silent unseen rather than a valued member of society. I’ve tried so hard to keep going, but the effort it took to sustain this became greater than the effort to face the truth.
There was a tsunami raging within me, scattering my essence into oblivion and thrusting with a force so strong, it took my breath away. Every cell of my being quivered as the decades of uncried tears, frustration, disconnection and isolation surged up uncontrollably. Yet, they quickly subsided as I pushed them down, hastily turning the key on the lock to the door to my soul and quickly flicking bolt after bolt to lock it away. If I let that out, I was sure I’d be lost. I felt it must stay buried as my turmoil unleashed would cause havoc in my already chaotic life.
Of course, I knew it would be better not to try to wrap everything up and lock it away in neat little boxes and it’s better to accept the fact that nothing in life is fully resolved: questions remain unanswered and puzzles have pieces missing, yet, life still ploughs on in a somewhat random and incongruent fashion. Despite knowing this, the desire to place everything into boxes became a driving force for me as it felt as though I was keeping a lid on the chaos, and fooling everyone that all was well in my world, but, over time, the hairline cracks became gaping chasms as I fell apart. I couldn’t sustain the façade forever and I found myself tumbling, spinning and struggling to breathe.
I think it’s a ‘thing’ with many with long-term health issues as we turn into perfectionists as we try to control the few things we can. We watch as our lives slowly start to spiral out of our reach and it’s hard to accept the diminishing circles of the self. As I slipped between layers of being, feeling the rush of emotions wash over me, I knew resistance was futile. My ability to lock the chaos away had vanished and I was left face to face with the force I had been denying for most of my life. The pain was immense: the grief, the loss and the anger all raged. I felt ravaged by a life of not living as those emotions flooded free.
I felt as though I was in the ocean, trying to keep my head above the giant swells; intuitively I knew resistance was pointless, but I tried all the same. It’s instinct to fight to stay afloat, that’s what I’ve always done, but as the waves pulled me beneath the surface I realised it was time to let go. I was broken and weak, confused and overcome. I focused on my breathing and kept reminding myself to breathe in and out, in and out. Initially I started to sink, feeling overcome by the watery depths, my head telling me I can’t breath beneath the surface, but my heart knowing otherwise. It was only when I stopped fighting the water, I relaxed and rose up again. I realised that the force I’ve been fighting my whole life is myself and the harder I fought, the tighter the knots wrapped around my heart and soul grew, slowly squeezing the life-force out of me. I started to focus on the gaps in between the breath, where I was neither breathing in or out, and realised that this ‘in between’ space is where I could hope to find peace.
Some days I found myself collapsed in a heap on the bed, sofa or floor, wondering how I got there, my body aching with exhaustion and grief. I felt numb, but raw at the same time. In those moments I grew very aware of the sensations and noises inside my body. The flickering of my eyes, the burning frost bite cold in my foot, the tingling in my arms. Some days it felt as though a butterfly had entered my body, flickering around inside of me as my muscles twitched and spasmed. When I was grief-stricken, I felt like I was sinking and suffocating. My longings to end were a quest to finally find some peace. To find an end to the constant onslaught of hospitals, pain, tests, fatigue, bodily dysfunction, assessments, vanishing independence, isolation, housing issues, mental health issues, financial worries…I became lost many years ago, and I really didn’t know who I was anymore. There was no room for me and I couldn’t breathe. My breath had been held in for what felt like eons, and I’d not really lived for years.
I seriously contemplated ‘ending’ on more than one occasion. Ending somehow feels more polite a term than suicide, but maybe the rawness is needed as a way to acknowledge the true depths of my pain. So, I’d seriously contemplated suicide several times, coming so close but shutting down before it was too late. When I’d stirred from the pain and numbness, seeing piles of pills around me on the bed, I realised things needed to change.
Perhaps it’s an inevitability of living with health issues that isolation crept in for me. It was insidious and nebulous at first, but it grew over time. My desire to be ‘normal’ exhausted me, so I started not going out so much; it went from replying to an email or invite in a day, to a week, a month, then longer. I cut myself off as a way to cope but, at the time, I didn’t realise the damage I was doing to myself in the process as we all need interaction and connection.
By the time I’d realised how isolated I’d become, it was almost too late as I’d lost the confidence to ‘get back out there’. I suddenly felt unable to do the simplest of things I’d never have thought about before – going to the shops, going for a coffee. I felt ashamed my body was so broken, and I also struggled to find the words to reach out to others. I put on a brave face, feeling determined to ‘go it alone’ but that used up even more energy. Asking for help has never been easy for me, and I didn’t want to appear weak, so I thought it best I stand alone. Understandable maybe, but foolish. I have a loving family and friends, many of whom I haven’t seen in a long time simply because I’ve kept my distance, not wanting to be a beacon of the struggle that my life had become.
I realised I needed to break down the brick wall I’d built around my heart and soul, and to know it’s okay to not be ‘perfect’ as no one is. True friends wouldn’t judge or see me as a failure, they’ll love me all the same. So, although I’ve always been awkward in life, like an ill-fitting jumper, it was finally time to get over myself and start living once again. I wanted to talk, chat, laugh and interact, so this was my clarion call: ‘hello world, here I am!’.
A recent hiatus on a very close friendship made me realise how much I need true friends in my life. The hiatus left me feeling voiceless, powerless and very alone; I felt an acute sense of disconnect and loneliness as I could only witness the situation, I didn’t have a say. There were many reasons for this, but it sent me into a tumultuous spin, and the pain I felt was so intense it felt as though my heart and soul were being ripped out. My natural response was to back away from the world even further in an attempt to protect myself from even more hurt, but I intuitively knew this really wasn’t the way. I’ve always kept my distance from others, in truth, no one really knows me (and I’m not even sure I know myself). This needed to change as it’s part of the problem, not the solution.
Yet, how could I overcome such a challenge? How could I step beyond the brick walls and the pain, and start to reach out to others again? Well, there was only one way, and that’s by doing it. Gently at first, but slowly pushing my boundaries until I started to see beyond the four walls of my everyday life. I’m not now walking in some rose-petalled wonderland, but I’m beginning to feel a sense of hope once again. The power of connection is so often taken for granted, and it was only when I felt such a profoundly deep sense of disconnection did I realise the preciousness of interaction and openness.
It’s still a work in progress as I still often find myself smiling as a way to cover up the pain and dysfunction, but I’m slowly learning how to not do that, to be genuine and to smile only when I really feel like smiling. It’s not been easy to accept my fragility or to acknowledge just how much pain (physically, emotionally and spiritually) I was in, but I’m slowly letting go of the façade and dismantling the towering wall around my heart and soul, brick by brick…