There are stripes
My pale skin,
Where the matter of me is stretched thin
Light and dark matter between
Each cell’s loose connections,
Each day my stripes go unseen
By those whose fear casts reflections;
Projections of who they fear themselves to be
As they try to warp and bend my sense of identity,
But their fear is not me.
I’ve always had a thing for zebras, quite rightly so as it happens. It turns out I am one. I can see you all raising your eyebrows and thinking I’ve now completely lost the plot. To which I’d reply, is there a plot to lose? Seriously though, zebras are the sign of awareness for a set of comparatively rare conditions varying in seriousness that affect the body’s connective tissues. My recent poem Diagnosis 07/02/19 describes the moments, last week when I was told I was one of these people. Chronic illness and disability are not new to me, after a lifetime’s collection of diagnoses of mostly invisible conditions ranging from relatively mildish cerebral palsy to severe asthma, fibromyalgia, myalgic encephalomyelitis and a whole lot of other gubbins. Most, if not all of it is probably linked to something called Ehlers Danlos Syndromes, the most common manifestation being hyper-mobility, which makes me laugh because these days I’m on wheels or not moving.
It has not always been the case. In my life I’ve danced, traveled independently, rock-climbed, stood for parliament, and worked in high-risk situations, often with vulnerable people, which I suppose I also am, but I’m also strong. My man and I cried when we looked at the Ehlers Danlos Society website and saw a tagline on an image which read ‘fragile but unbreakable’. My mum would later echo the same words “That’s you.”
I’m sharing this with the blogging world for several reasons. I want to reach out to others who suffer symptoms others cannot see and tell them simply You Are Not Alone, which I know I’m not. I want to raise awareness of chronic conditions with hopeful poems such as Butterflies and To Sweeten Bitter. (Different colour butterflies raise awareness for various conditions.) I need to face down those whose attitudes compound pain, self-judgment, and alienation with poems such as Do Say, mourn what I’ve lost in poems like To All I was Before and 40 Fragments and herald my own and others’ strength in poems like Laughing the Stars, The Jade Quill, Wild Forever, Thirsty Words and To Remain Me.
There is no cure for EDS but some resulting problems can be managed and, while others can’t, it will still be positive to let go of decades of self-doubt and put a name to it all. There are also ways to challenge barriers to access. I explore these in poems like High Street Quatern. I was unknowingly born with this and I’m waiting to hear which version I have. I’m trying to stay positive, knowing how many hurdles I have jumped in the past.
Back to the zebras. Doctors are taught, when they enter the world of medicine full of curiosity and will to heal, to stop looking for the unusual; to become blinkered to differences. The analogy they are given is when they hear hooves don’t expect zebras. They are taught to see horses even when there are stripes. Of course many don’t listen and continue on, warriors for healing to the last. But many do stop looking or hearing, cowed by pressures to cut costs and push patients through on a conveyor belt. Too many are ignored for too long, or misdiagnosed and in various ways mistreated. The costs of this can be immeasurable to individuals, families, communities, societies.
Other reasons the zebra is the symbol is that every one of them has different stripes to the rest and because the collective noun for them is ‘dazzle’; a dazzle of zebras. I like it. I’ve decided, whatever the outcome of upcoming tests to discover which type I am (and how bad it could get), I intend to do a bit of dazzling. To put it a more mundane way, I hope to show any in doubt that people with chronic conditions matter, that we can shine brightly too, and that if we are ignored we will canter into doctor’s surgeries, town halls and down city streets with butterflies of every hue fluttering beside us.
Change begins with awareness, so I’m here, now, showing my stripes.
Antonia Sara Zenkevitch
Yes! I’m sorry for the news but know that it must be a relief to have a name for what you’re facing. I don’t have EDS but MS, but I was a zebra for 23 years, begging the doctors to listen to my story and not brush me off. I had to go to a naturopath to finally hear the words multiple sclerosis. Even though, unlike EDS it’s a pretty common autoimmune disease, especially in Canada.
Great to be sharing your story because, as you say, it’s only through awareness that things will change. I wish I had found the chronic illness blogging community back when I was still searching. Such an amazing, supportive group of people. 😊💕
Hello Amanda, thank you for getting in touch. I’m sorry you had to go through years of not knowing and grapples with doctors too – but glad you finally got a name for what you are fighting. I think this waiting to know is very common across chronic conditions. I’m only just finding the chronic illness blogging community but I have friends with various conditions who say similar and I have other illnesses both definately linked and potentially linked to my EDS. I’m waiting to see which kind of zebra I am – and worrying about others in my family. But a light is glimmering and that light is called truth. 🙂 Take care, I hope you’re getting useful, meaningful medical support now.
Thanks so much, Antonia. Good luck to you, happy to have ’met’ you!
Happy to have ‘met’ you too, Amanda, take care
You are a very brave woman Antonia. Though we are not unique in what ails us, we are alone with our pain, we are the ones feeling it, going through our daily with challenges through our ailments. It is good to share with others and learn from each other how we cope or not, so many are sitting at home, never sharing for fear of disclosing their feelings.
Thank you Helene, it is daunting sharing our feelings about such things isn’t it? But, as you say, it is important to do it when we are able and to hear and encourage each other. Thank you for hearing and encouraging me.
My pleasure to know more about you Antonia.
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