Being is Enough

There’s a unique monotony to chronic illness. You wake up, pray your pain is miraculously gone. It’s not. You shovel pills down your throat, more than you can count. You pray they work. They don’t. You move through your day following a not-so-elegant dance routine, going through the steps, trying to make it until bedtime. If you’re lucky, sleep comes easy and gives you a few hours, never enough hours, of relief that only escaping to another state of consciousness can do. If you’re unlucky, the very thing you’re trying to escape is what has you shackled down to this world. You can’t disappear. You lay there, staring at the ceiling fan as it spins and spins, waiting for the light of day to pierce through the slats of the drawn-down window blinds. Then, you start all over again.

Wash, rinse, repeat.

You get stuck in this routine. It slowly becomes like a dark shadow over your life, a constant companion. It represents all that this illness has taken away. It has tried take away all that you are. You can’t be a student. You can’t be an artist. You can’t work. You don’t feel like a productive member of society. You feel like nothing more than a drain, a burden. You can’t label yourself with what you do anymore. You just exist.

You just exist and you watch. You watch through a window. You watch your friends, your family members, accomplishing goals. You watch them advancing in their careers. You watch them starting families. You watch them ticking off countless items listed on your long abandoned, now dusty and untouched, bucket list. You watch them grow up, move on. You watch them becoming labels, defined by what they do. They are leaders. They are academics. They are doctors. They are teachers. You wish you could do that too.

With passing time and accumulated courage, you decide to make a change. You step out shyly from the shadows, telling yourself it’ll only be for a minute. You want a taste, a sliver, of what these companionless people experience. Despite continually looking on from your place in the shadows, it’s like the whole world has changed since you’ve last walked in the sunshine. The air feels fresher. The light feels warmer. The blues look bluer and the greens, greener. The birds chirping and the wind blowing, the kids playing and the animals roaming, they’ve all gained a certain other world musicality providing the perfect soundtrack to your life.

You feel the grass, soft under your feet; nature’s homegrown carpeting. You venture over to a garden in full bloom, displaying a whole rainbow of unbelievable colours. You pick a petal off the most vibrant flower you can find. You close your eyes as you rub it between your fingers, memorizing the feeling of its velvety smooth surface unlike anything you’ve ever felt before. As a gust of wind blows, you are overcome by the sweet smell of the flower’s nectar. You don’t like perfume, man-made smells, but you like it’s scent.

You inhale deeply, filling your lungs to they highest capacity, and exhale slowly until you’ve expelled every last molecule of air. The shadows start calling your name, beckoning you back to the place you have dwelled for so long. You realize, after stepping out into the sun, there’s no need to go back. In order to live in the light, you don’t need to be doing, you don’t need to be labeling. Experiencing is enough, breathing is enough, existing is enough, being is enough.

You are enough.

At birth you are given the most important gift, that of being a vastly unique human being. There’s not one human living the same experience as you. Whether your human experience is full of accomplishments or none at all, whether it’s full of titles or none at all, whether you’re admired by many or only one, it is enough. Once you choose to embrace this gift, no illness, no shadow, no darkness, can take away the light. The light isn’t the sun or the stars, it’s you.

You are not destined to live in the shadows. You are not destined to watch passively as others live. All you need to do is be.  Channel your bravery. Take a deep breathe, take the step out, and soak up the sun because that is where you’re meant to be.

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3 thoughts on “Being is Enough

  1. Heidi Cameron says:

    Hi My name is Heidi and I live down in Nova Scotia.
    I am amazed at reading your blog. I am relating to so many things that I have read so far. I was diagnosed with EDS when I was 16, since I was a baby I was monitored at the IWK up until I was 18. The doctors first thought I had marfan syndrome but ruled that out. When I was 21 I started having SVT a lot and it would happen at the most random times. I had 2 surgery’s to have it repaired. The first surgery was in Sept.2013 with the burning ablation method and as soon as I returned home from hospital it came back, 1 year later in Sept.2014 I had the freezing ablation method done and that was a success. I am now 27 and I am starting to notice an decline in my joints more. I recently had a bone density scan done and it came back “slightly low”. As of next week I am going down to the Connective tissue clinic they have in Halifax. I have never met anyone else with this condition, I see yours is more severe then mine. I can relate to most of the pictures you posted with the flexibility. Looking forward to reading your blogs. Take care.

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  2. jodiebodie says:

    Hello, I have found your blog through Catherine Richardson’s (of “Finding My Miracle”) Twitter feed. I saw your tweet about universal healthcare in Canada with a question mark. (Australians are also concerned about their universal health care system being quietly eroded.) I noticed that you crochet (I love crochet) and that you are an expressive writer. This post and “Finding my Voice” are particularly inspiring to me.

    Don’t you ever think of yourself as ‘unproductive’ or ‘a burden’! You are carving your own niche in the world very well and we all have our own circles of influence whether large or small. Your worth does not depend on how much or how little you do. You are worthy just because you are you – and judging from the recent media attention, that’s all you need to be! Well done and all the best to you. 🙂

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