My name is Sarah-Jane and I decided to start this blog as a way for me to try to make sense of my life. Admittedly, I’ve spent most of my life trying to make sense of my life and I’ve failed miserably but I thought I’d give it another go. Much of my life has been put on hold due to a rising crescendo of problems with my health.
Over the last five years, the last year in particular, my body has thrown a tantrum of epic proportion and I’ve spiralled deeper into pain, loss of function and increasing fragility. I have several conditions and together they have challenged me on every level of my being.
I have Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Complex Regional Pain Syndrome (CRPS), Postural Tachycardia Syndrome (PoTS) and Fibromyalgia. I should probably also mention the eating disorder, severe migraines, depression, adenomyosis as well as all of those other aspects of me that don’t work as they should but I won’t go into detail as Dr Google can do that if you’re interested. These labels do not define me as a person even though they fill up my life with medical appointments, tests and treatments.
There are days when I feel like my life is being squeezed out of me as the little gaps in-between my hospital appointments get progressively smaller, but I don’t let this grind me down (mostly). Admittedly I have days when it feels as though the floor has been taken out from underneath me as I struggle to cope with life but there are also days when I feel vibrant and alive.
Elizabeth Kubler-Ross once wrote ‘people are like stained glass windows. They sparkle and shine when the sun is out but when the darkness sets in, their beauty is revealed only if there is a light from within’ and I feel as though, by turning to face my ill-health I have allowed my own light to shine once again despite the grey stormy clouds of pain that colour the canvas of my world. Life is essentially what we make of it, I’m not living the life I’d dreamed about or hoped for but it’s the one I have.
Although I’m not about to start waxing lyrical about the joys of pain and suffering, I have stopped being so angry with myself for being ‘broken’ and ‘faulty’, I’ve turned to face the mirror and I have chosen to stop fighting myself when it comes to being stoical and always putting on a smile; I try to just let me be me these days even if that me is sometimes a crabby, sour-faced old cow. Being real means being vulnerable, something I’ve never been comfortable with, but it’s a learning curve!
Despite the ups and downs of life I’ve always managed to salvage myself from ‘soggy biscuit syndrome’; from being that bit of biscuit that gets lost in the bottom of the cup of tea we call life. I was recently chastised for using the phrase ‘it is what it is’ as it doesn’t really mean anything, yet, for me, my health ‘is what it is’. I live with pain every minute of every day so I’ve had to find a way to incorporate it into my life as my battle with pain became the true root of my suffering rather than the pain itself. ‘It is what it is’ is my way of accepting my reality. Of course, I’d rather this wasn’t my reality, but it is.
My passion is writing and my writing has taken many shapes and forms over the years. This blog is a step in a new direction for me as its focus is on my own journey in life. Stepping out from the safety of my keyboard is certainly taking me out of my comfort zone, but it’s about time! My favourite quote of all time is from Rumi ‘When you do things from your soul, you feel a river moving in you, a joy.’ I feel the river inside of me moving when I write as it sets my soul on fire. When the river flows, I know all is well. Of course there are days when the water rages uncontrollably and knocks me off my feet (literally) but I’ve learned that these days pass. Writing is my river and this blog is a new tributary for me.
Admittedly, these days as I can’t actually use either hand properly my ‘writing’ is voice activated which creates its own series of challenges as the rivers flow frequently gets dammed with gibberish. Initially I was bereft that I could no longer type but I found a way through. I think that’s what we do when life gets challenging: we find new ways through. It frustrates me that I have to keep finding new ways to adapt and cope, but that’s life, isn’t it?
I’ll finish with some more words from Elizabeth Kubler-Ross ‘The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen…’