HAWMC 2013 Day 15: Sharing! A great post by another blogger….

 

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link them back to let them know you were inspired

 

Blog Post: Shipwrecked from ‘Chronically Creative’

In my early teenage years whenever I was bored (and attempting to avoid homework), I’d sit at my family’s communal computer and wait for the animated screensaver we had installed to pop up. Sometimes I would let a good half hour slip away watching a shipwrecked, disheveled cartoon man fighting to survive on a deserted island while awaiting rescue. I watched him catch fish for food and climb trees to collect coconuts to drink juice from. I watched his fruitless attempts to build a life raft from washed up planks of wood leave him drained by disappointment. I felt his frustration when he couldn’t get a fire going. I saw the SOS messages sent out- desperation packed in a bottle and tossed into rough seas, with a smidgen of faith that the cries for help would reach populated shores.
Whenever a plane happened to pass over the island, I watched this cartoon man’s hope soar as he jumped up, waved, and welcomed the possibility of rescue, only to have it plummet with the sadness of still remaining unseen. The days were long and lonely. Sometimes the sadness and disappointment got the better of him, but despite the harshness of the sun’s heat, he kept picking himself back up and letting the hope of being rescued one day wrap tightly around his heart. When it seemed he had exhausted all options, he would sit and dream of a life free from the limitations the island imposed. In the dark of the night he would lay down and stare at the stars, believing for a better day.
As I sat down to put pen to paper the other day and attempted to empty my mind, the memories of this screensaver flooded back. In that moment of contemplation, I realised that what played out on that computer screen, metaphorically speaking, describes what life with chronic illness is like a little.
In the pitch black of night, stormy seas have rendered me shipwrecked. Now I’m stranded on an island with day time temperatures akin to the sweltering Sahara, lost in bleak and dismal emptiness. I feel lonely. I feel scared. I feel hopeless. I feel disconnected. I feel depressed. I feel isolated. I don’t feel like my life has purpose and meaning on this island. I am just doing what I have to do to survive and get by. I am barely living. The mundaneness and monotony on this island is terribly unfulfilling.
My ship lies broken in pieces half-submerged by shallow waters, a constant and frustrating reminder of its uselessness. I try and build a life raft but I keep getting splinters. I try to keep on going but I can’t keep the planks of wood together. I try to get myself back to normal life, but my plans and ideas keep sinking. I feel so stuck. Am I ever going to get off this island? When am I going to be able to get back to normal life?
Just like cartoon man pinned his hope on a passing plane, I too get my hopes and am let down. I hope that a new drug, a new diet, or a new doctor will be able to throw me a lifeline. Though time after time I am left bitterly disappointed. Sometimes my cries for help go unanswered. Sometimes people passing by are too busy to notice that I am struggling and need some extra support. Sometimes the bad days get the better of me. The loneliness, the frustration, the pain, the exhaustion it just gets too much.
However, when things start looking bleak and my heart is overwhelmed, I hold onto hope a little bit tighter and dream bigger. I explore and discover new things. Exactly like that cartoon character who I sat intently watching all those years ago.
So, I sit and I dream of a life free from unrelenting pain and crippling fatigue. I dream of all the things I will do when I’m finally better. I dream of travelling, writing a book or two, getting a degree, starting a business, falling in love and having a gorgeous country wedding.
I dream of setting sail again, getting back on course and heading off on wonderful adventures.
My ship may have sunk and it may seem as though there is no escaping this island, but help is on its way. Help is out there somewhere. Someday soon, I’ll have a brand spanking new ship, but until then, I just have to sit in the sand, be patient and keep on dreaming and believing.
Thank you sharing such a wonderful post. I very much enjoyed reading it. I loved the metaphors! And I particularly enjoyed the comparison between the computer screensaver that you used to watch and life with chronic illness. As I was reading the post, the more I found that I was able to relate to your words – yes, you are right, living with chronic illness is very much like being shipwrecked on a deserted island. And the body being compared to that of a broken vessel. As you mentioned, being shipwrecked is often lonely, isolating and hopeless – the same feelings that many people live with on a daily basis alongside chronic illness. Even more, the condition I live with – a long-standing brain stem lesion is rare, and after spending a lot of time in various hospital outpatients, seems to be also untreatable. Because the condition is rare and unheard of, also means that I have not been able to find anyone else, online or offline that has the same condition.
So, it seems that my health condition has also drifted me out to sea, resulting in me washed ashore a deserted island in which I am isolated and alone and with no way off the island. No resources for my condition; no organisations that I can turn to for help or support – just like being deserted on an island with no resources to be able to find a way off the island or even for survival.  And resources that may be helpful for finding a way off the deserted island (or in terms of chronic illness – treatments) only ends in disappointments or further problems (i.e. unwanted side effects).
I can understand and relate to your frustrations regarding being let down by doctors, and promising new treatments only for them to end in disappointment and further unanswered questions.  So many times, I have gone to the doctors or hospital consultants hoping for support or any further help that they can offer only to hear those words “I’m afraid there isn’t anything that we can do….”  Does feel like slowly sinking in a wreckage; barely keeping my head above the rising water.
Also, I love how your post also reminds us the importance of remaining positive despite the chronic illness; despite being stuck on the deserted island.  How important it is not to let the illness rob us of our dreams or aspirations, as often it is these dreams and aspirations that get us through the dark times.  The belief that all the answers and help is out there somewhere; and someday the help will come and rescue us from the island; from our illnesses.
However, more than this, your post provides an excellent way of describing exactly what it is like to live with a chronic condition daily to someone who is healthy. Often, it is difficult, to understand another person’s point of view, decisions or even their way of life if we ourselves had no prior experience of that particular situation or had no relevant information regarding the situation. People, in my life therefore have a very hard time in trying to understand what it is like to live with the symptoms that I do. Your post, however, uses a fantastic and simple metaphor in order to share with ‘healthy’ person the struggles and difficulties that chronic illness places on our daily lives each and every day. Okay, the ‘stuck on a deserted island’ isn’t a situation that many people have faced, but thanks to television shows such as ‘Lost’, it is one that is much easier to imagine the experience of then that of a rare condition like mine!If someone again asks me to explain the experience of living with a chronic illness then I will certainly signpost them to this incredible powerful post! Well done!
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2 thoughts on “HAWMC 2013 Day 15: Sharing! A great post by another blogger….

  1. Hey there! Thank you so much for taking the time out to share my post- it’s encouraging to hear that you connected with it and I loved reading about your experience, too. I almost wasn’t going to publish it as it was such a struggle to write and I seriously thought that it didn’t make any sense. Your lovely comments have given me a much needed confidence boost!

    I’m looking forward to getting to know you.

    Emily x

    • Hi Emily

      Thank you so much for the feedback. I hope I did your blog post justice! It certainly was a fantastic blog post; and one in which I think many ‘spoonies’ would be able to connect to. Looking forward to getting to know you too.

      Take care

      Rhiann x

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