There is a specific kind of guilt that can plague survivors who got through something life threatening and come out the other side. Maybe it was an accident, trauma, war, hostage situation, cancer, domestic violence, child abuse, hurt. The guilt swoops in once they realise that they survived but others did not. So the question ‘why me?’  ghosts through their minds, shining spotlights onto every part of them that is not worthy of the gift of survival.

I do not deserve this. Everyone does. So why did it happen for me and not for them? How can I make sense of it? What hierarchy of soul assets could ever possibly qualify me to deserve reprieve when others get none?  None of what I have within myself is superior to any other human. Is it all pure chance? Luck? Universal benefaction? Godly miracle? Alignment of planetary bodies? Karma?


picture of an oil painting by John William Waterhouse (1916) of a redheaded girl looking out to sea at a chip being wrecked on the rocks.
Oil Painting by John William Waterhouse 1916 “Miranda -The Tempest”

Why me?

Why not me..? Answers back. That small audacious whisper. I hush it back into it’s corner. How dare it speak up? The mirror in which I examine my value magnifies my insecurities.

It was easier to wonder why not me when I was sick. Worthier. It was easier to push, using all the survival drive my physiology could muster. Why not me? I tried and sought and searched and strived. I wanted to survive. And now that I am thriving?  I wonder if it is a monumental case of mistaken identity, was it meant for me?  I fear that I cannot do it justice. I exhaust myself with my desperate need to never take anything for granted; gripping on to the epiphanies of illness.  I prostrate myself into works of compensation, trying to redress the balance that tipped things into despair and took so much from the people I love. I burn the energy that has been gifted to me on the backlog of yearnings. The things I missed. The things I couldn’t be. The person I think I could be but maybe, will not.

I just want you to know, you who continue to suffer, I want you to know that I have not simply sailed off into the sunset. I struggle to write for you because I feel like my remission has given me something you don’t have, and that feels unfair, like a betrayal. I wonder if you find my words aggravating, or boastful, a reminder of all that you cannot do. Those among you that are close to me have assured me that my story brings you hope, but I worry that it also brings you pain. Because, see? There I go again. Doing the things you can’t do, living the life that eludes you. And I do want to live that life, because it is mine.  I even want to go sunset sailing, sometimes, though I have no sea faring vessel. I want to run away; I want to stay.

One of my favourite poems is by Christina Rosetti. There is a line that expresses the way this feels

“When I half turn to go… yet turning, stay.” 

I have never been a goodbye girl. I won’t do it. So I remain here, caught on the cusp of sick and well. My hand reaching out across the divide between our experiences, the distance between our hands growing every day.  I think I have that hated thing called ‘ableism’. Because I do believe, with all my heart, that there is a massive difference between being well and being disabled through illness. And I think it is better to be well.  I think most of you with Dysautonomias think that way too, but dwelling on that is too painful. When ‘well’ is out of reach, people make do, we find joy, we build meaning where we are. It is a triumph of psychology. By far, the hardest thing I have ever done, was staying afloat through all those years. I was not always successful. When I sank under, you lifted me.

And here I am, washed ashore; not drowned. Dry, standing at the edge of continental opportunity. I have caught my breath. But I stare back out to sea wondering if you are treading water in shark infested waters. Willing you to keep your heads above water, to find the flank of our ship wreck; to hang on. My soul flies across the deep but the winds and tides can’t hear me. I am impotent to ease your suffering. And I am sorry.

So sorry.

9 thoughts on “Shipwrecked”

  1. Rach I had things to say but now I’m not sure what to say so I hope this makes sense.
    Grab ‘well’ with both hands and enjoy it as much as you can and don’t feel guilty at all. You have every right to this. You have every right to feel amazing. You have every right to ‘well’.
    I know you haven’t left us behind, you still think of us and you still remember what it was like.
    You give people hope that they can recover like you have. Seeing you live your life makes me happy and makes me hope that one day (hopefully soonish) I can join you on the shore.
    I agree wholeheartedly that there is a big difference between being disabled due to illness and being disabled for other reasons – I would wish this away. It has made me who I am and I am happy with who I am, but I would choose for it to go in an instant if I could.
    Be happy, don’t feel guilty. You’re amazing <3

    1. Thanks Claire. A lot of people have contacted me, hoping that what worked for me will work for them. I wish it were that simple. I wish that with all my heart! One of the trickiest parts of being a blogger (as you well know) is fielding the mail that comes and knowing that Dysautonomia is such a varied thing in all the various bodies it afflicts. I feel hopeless sometimes, like all the time and effort and writing have amounted to not much help really. Each of us has to seek out the doctor who can help us. And each of those doctors will seek out the best treatment (hopefully) to treat us. I wish I had more answers for people. I wish I had a rescue boat and some burly lifeguards!
      The day you find your way to shore my friend, we shall have a beach bonfire and party like it’s 1999! 😉

    1. I dunno, I think some shackles keep us grounded. Not all of the things we tie ourselve to, though. I don’t ever want to forget any of it, because being sick gave me a profoundly different view of life, and that has helped me to love life more, give more and to stop giving up when the going got tough. But I do hear you. I know that the guilt isn’t very useful.

  2. Rach, you have given so much and continue to do so. Those who ‘know’ you will only feel true delight for your current state of wellness. I wish you health, happiness and joy for the rest of your days. When I think of you now, it is not with envy for sadness for my own situation, it is with elation for the experiences you now get to live with your children, the work opportunities you have and anticipation to learn of your latest achievement.
    You my dear friend deserve buckets of sunshine after all of the rain. The guilt is a natural part of the process, you have been ill a long time. However, that doesn’t mean you need to feel it forever. I know I speak on behalf of many people when I say that we are so damn happy for you!

    1. Thank you Alyce, you are a treasure. I have been so lucky to make so many wonderful friends that I wouldn’t have met otherwise. I think you were my very first ‘bird of a feather’ X Thank you for your generous words. X

  3. I can understand your guilt completely. I have “made it to the otherside” 5 times in my 50 years. Each time I have been overcome with massive amount of shame, doing penance until I was exhausted, and the next one came. Doctors cannot explain how and why I have started getting hit with auto immune diseases, several were from birth, my DNA and chromosomes being utilized to attack myself due to guilt from earning a 6 figure income, while at the same time helping make life easier, finding ways to get the care and medication low income seniors and the disabled. But, it was so unfair that I had a beautiful home and never worried when i started checking out with a full basket. So, somewhere in my heart? mind? soul, decided to attack itself, and this Will be the last time. Please, let go of your guilt and grab life with both hands, accomplish everything in your bucket list and then some. Do it for those that are unable to, and be filled with joy, knowing you are helping us feel alive and part of the world again. Use your blog as a tool, with pictures, stories, beatiful words…. You will be a light for us. This is your greatest gift

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