The Shame Of It

“It’s hard to wait for something you know might never happen; but it’s even harder when you know it’s everything you want.” – unknown.

“Change is hard at first, messy in the middle, and glorious at the end.” – Robin Sharma

It has taken me an hour just to copy and paste the quotes you see above. I don’t know how to start this post, and I don’t know how to move on from the full stop that will follow this sentence. (See, now I’m stuck). I… Erm…

I guess I want to talk about… Shame?

“Shame is the most powerful, master emotion. It’s the fear that we’re not good enough.” – Brené Brown

There is often an awful lot of shame around being unwell, in the changes it induces within us… Or at least there is in my experience. I am aware that a lot of it is illogical and unnecessary to some that look at the world from a viewpoint of average health, but to me it feels inevitable, justified, and deserved. I am also aware that this is another pathetic blog post about my health and its impact on me, and I’m sorry to bore you with it (if you even read this far), but this is the only space I have to… Let it out.

I came face to face with my own stubborn shame today, fuelled by guilt and a refusal to accept that the things I want my body to be capable of are well out of its reach (at the moment). I got very annoyed at Winston (the wheelchair). More than annoyed, I was angry at the incapability he represented. It shouldn’t have bothered me but it did today. I don’t usually get annoyed about my health, as I am aware that it could be an awful lot worse (for starters, I’ve survived some things I shouldn’t have, so I can’t really complain about being alive). I am thankful and grateful no matter how bad the situation gets because I am aware that there is always somebody going through something worse – even when I’m dying there are people who are dead.

Usually I accept that it is what it is, and occasionally have a little wobble when things change in ways that make me wonder if I’m going to make it to the future that is sat somewhere waiting for me. But for the first time since I was a young teenager, I was pretty outraged at my own body. I am ashamed of this alien anger that suddenly sprung up out of nowhere. But I am, in a way, glad that it is anger and not a state of feeling completely overwhelmed. Frustration is good, frustration is fire, frustration means determination, frustration means I still haven’t given up (somehow). Frustration fuels change, it is a driving force, and it is… Incredibly destructive if you aren’t in a position to do anything with it.

“”Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured.” – Mark Twain

I wasn’t angry at the world or anyone or anything else – I was furious at my body. I wanted to tear the thing to shreds and start over, I wanted to beat some sense into it. I wanted to… go for a long, long walk (that’s how it all started actually).

I don’t want to just keep moaning all the time, I’m so sorry that I do. I just… I walked a tiny way to the car and I wanted to keep going. I was wiped out, my energy levels were -1,000… But my legs are functional, capable, working legs and if only the rest of me would let them, they would have carried me for miles. That knowledge, coupled with the freedom of being able to walk a short way, made the whole wheelchair situation even more frustrating. (It also made me feel like I needed to justify my use of a wheelchair, like I needed a sign explaining why I was incapable of walking when my legs were fine, and that only added to the unease I felt being pushed around. I felt ashamed of myself, I almost felt like a fraud for not looking like I needed Winston – even though after the past few days I do look visibly unwell.)

We drove to Margate to go to The Turner Centre (which I was SO EXCITED to go to but is shut on Mondays, as it turns out), so my grandparents ended up just pushing me along the seafront. This was a) at times terrifying, as occasionally I wondered if anybody else was aware that we were veering off in the direction of the road. b) an interesting experience which involved a lot of misjudged kerbs and bumps (meaning I nearly learned how to fly and had to grip onto Winston for dear life) c) highly embarrassing, because when your granddad is 6’7″ and you’re in a wheelchair that any cop would pull over for dangerous driving if it was a car, all eyes are (understandably) on you. And sympathetic looks are not something I deal well with – I have this weird way of always wanting to appear strong, to show no weakness, which probably has a lot to do with the fact that when I was younger I got used to being beaten up and not giving anyone the satisfaction of a reaction. Sympathy, even though it stems from kindness, makes my skin crawl. I don’t know what to do with concern or care when it is directed at me, I am always scared that something sinister hides behind it because in my experience it usually does.

I feel at this point I should point out that my grandparents are amazing and I love them and they got me out of the house and BY THE SEA! – which the sailor in me LOVED.

Processed with MOLDIV
A picture of the Great British seaside (pun sort of intended). Yes it was overcast and there was rain in the air and we seemed to have lost several of the 22 degrees (Celcius) of warmth that were hanging around yesterday… But could you have an English beach in June (and almost midsummer’s day at that) any other way? 
I breathed in the sea air; I saw the lifeguards’ flags on the beach and the sign ironically telling me that I could only swim between their waving material (which I couldn’t even have managed to walk to). And yet… my legs felt ready to walk. They wanted to walk and I wanted to let them, but my body could not fuel them. And then there was this flash of anger (that inspired this post), a moment of complete overwhelming frustration… Before I melted into the warmth of a deep and inescapable shame. And I’m ashamed of that ungrateful shame.

“Unlike guilt, which is the feeling of doing something wrong, shame is the feeling of being something wrong.” – Marilyn J. Sorensen

Not sure why I shared this, sorry. My granddad just read part of it over my shoulder and my family are never ever meant to read this so I am now freaking out at the invasion of my privacy.

“Shame cannot survive being spoken… And being met with empathy” – Brené Brown

I know this whole post is pathetic, and incredibly stupid, but I think maybe the passage I quoted above is why I shared my shame with the blogging community instead of anywhere else – because I can’t look anyone in the eye and say these things, and you guys seem to be pretty empathetic sometimes… Tomorrow night I am going back to the house where I feel sort of overwhelmed with shame as a result of my health and who I am.

So I’ll just try to remember this:

“Shame should be reserved for the things we choose to do, not the circumstance that life puts on us.” – Ann Patchett

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10 thoughts on “The Shame Of It

  1. If only you could see the joy in parts of what you write. My niece had a name for her dialysis machine, Wally I think. Love that your wheel chair has a name. I am going to send you an email. Keep writing! I hope it brings you the peace and happiness you deserve.

    Liked by 1 person

    • As always, thank you for such kind words. I seem to name everything – the IV pumps I was hooked up to continuously for months at a time, PICC lines… I guess personifying stuff makes it less unpleasant and sort of combats the loneliness a little. Sometimes I wonder why I bother to write such junk, and then I read comments like this and never want to stop writing ever. Thank you so much, I am not sure I’m so deserving of those things, and even if I am, I’d gladly give up my share of both for your incredible family. You have, as you never seem to fail to do, made me smile AND eliminated some of my shame. There aren’t words to tell you how much that means or how much I appreciate it. But another “thank you” seems like a sensible place to start.

      Like

  2. You don’t write junk, not even a little bit. Often your posts echo my own thoughts but allow me to see things in a slightly different light. Being told to look at things in a different light doesn’t help, but someone experiencing very similar emotions but explaining it differently really helps me.

    People read your blog because they care. Please never apologise for writing about your life in your blog.

    Ren x

    Liked by 2 people

    • You’ve no idea how much it means to me to read something like this – thank you. It’s hard not to read the things I write and label them as junk, but comments like this change my opinion of my writing for a few fleeting moments and for that I can’t really thank you enough. I’m actually pretty shocked that the things I write manage to help you even a little (we’ve clearly established what I think of it by this point), but it makes me feel a lot less ashamed of my moaning, actually (in fact, it makes it all worth while, my aim in life has for a long time been to help others, even just a little). I guess after all the comments and experiences I’ve had over the years it is an alien concept to me to accept that people care, and I can’t think why anybody would… But this… This helped a lot. Thank you for caring enough to write this comment. Thank you for reading at all, actually. Despite the number of them I have just written, I’m actually a little lost for words.

      Liked by 1 person

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