Shipwrecked

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.

Early Days

Early Days
Yesterday I went to see my neuro-immunologist.  I was really thrilled to be able to show him what has happened to me since I started my new treatment.  He, in turn, was enthusiastic about recommending IVIG or Rituximab to try to address the unknown antibodies that have been wreaking havoc in my autonomic nervous system for so long.

What a foreign place I find myself in, here in the land of the well. Yet, utterly changed from my years in the wilderness.

I hear small whispers in my ear. “Be careful”, “Don’t overdo it,” “Choose your activities carefully,” “Do everything while you can,” “It’s now or never”.

I am more hopeful than I have been before, because we have found strong indicators that my problems are auto-immune.  But there are equal parts fear and doubt.  I guess you can’t be sick for as long as I have without being afraid that it will all come crashing in again. You can’t take feeling better, for granted.  And because I don’t fully understand the science, I worry that I might be duping myself about it all. Maybe, somehow, I’ve convinced myself I am getting better. And that willpower will only carry me so far?  It is a ridiculous thought, but there nonetheless.   I have thoroughly examined my sanity, I have canvassed my doctors and my nearest and dearest.  Apparently, I am sane. I just need to find a way to rest in this current state of relative wellness.

And then; there are the others. As each new day arrives and I wake, swinging into an upright position and moving to the bathroom with ease, I remember. How waking used to feel like I was drowning. I remember that for so many of you, it still does. And the burden of your illness weighs heavy on my heart. How can it not?  I know your suffering. I know that for you, it carries on. And I try to fill my day with every little thing, for you. For me. For the unfairness of it all.

I am in this place of plenty, but I have forgotten the language of ease.

I can’t make it through a grocery shop without gushing to the checkout attendant.
“How are you?” she asks, because it is part of the script.
“Oh, I am GREAT!  So good, like, really really wonderful!”  I grin. And she eyes me with suspicion.
I can’t help out at my kids’ school without giddily and sincerely responding to thanks.  I yelp, “My pleasure!”  because it really is.  Maybe it raises some eyebrows. This happy girl I am. Maybe it causes discomfort.  Maybe it seems over-the-top.  But it is not.

This life, this ease of moving, this chance to do things and be part of things.

If only you could feel how I feel.

I asked my specialist yesterday if he thought it was reasonable to expect this good run to continue.
“It’s early days” he said.  And I thought, in my stubborn way, that early days are always followed by late days and all of those days together make up more days of good than I was having before. And I shushed the whispers in my ear and skipped out to the car. The hubster commented that the last time we were parked in this carpark he’d had to help me to the car and get me into the seat.  I swung my legs into the footwell and grinned at him.  We drove home, my hand on his leg.

My heart in my mouth.

Please, please let this continue.  I promise I won’t waste it.  Not one second.

 

YOU ARE SIMPLY THE