Saturday, 15 December 2012

Confessions from a lone snail

This little snail, had no sooner decided to climb when, out of nowhere a boulder rolled in to block her path…      
                              The first of many I suspect.

I think I have been ruined by television. I wouldn’t be the first. It seems I suffer from a kind of loyalty that others see as: silly, immature, ridiculous?

Perhaps it came from too many hours watching heart felt moments on the goggle box? A child of the 80’s learning what it is to be a ‘BFF'. Perhaps I’m just hard wired this way? But maybe I can unlearn?

After all I managed to unlearn the notion of ‘best friend’. Many an hour spent weeping as a child wondering where this magical best friend was? Why didn’t I have one? What was wrong with me? What was wrong with me is, I refused to play the gang games of small children (the anxiety filled nausea they induced was a quick deterrent), ‘I won’t be your friend if you don’t…’ ‘ You can come to my birthday if you…’.

Of course these games don’t stop in primary school. Maybe they never stop? It’s not like television; The friends that stick by you no matter what. The friends you can argue with and yet your friendship grows stronger. If you have one of those friends then count yourself blessed.

Relationships are hard, and perhaps I make them harder? I like to think the best of others. I like to assume that I am loved by those I love and to allow their behavior to go unqueried directly. I like to create stories of understanding, making assumptions about why they have acted in certain ways, assuming that something I have done has created the situation or that because I feel a particular way that it is a defect in me. My practice is flawed.

I know only they can know why they did something. And it is only when I comfort them with it that I can learn their motives. Or not, It takes a remarkable person who when confronted will examine and answer with authenticity.

Then lets add to the relationship the weight of chronic illness. There is so much literature out there on the difficulties of maintaining relationships (both romantic and friendly) while chronically ill. There is most likely no need for me to discuses it here. But bear with me, this is the bolder I’m trying to climb.

Chronic illness in it’s self is incredibly isolating. You are no longer able to interact in the same ways and to the same level as you once were. If you are unable to work (as I am) you do not even have the day-to-day interaction with work colleagues. There are days, weeks and for some I imagine moths that go by without speaking face to face with a single other person. It’s a lonely path. I can count those that have stayed genuinely close on less than one hand.

Being chronically ill, friends make assumptions about you. The assumers seem to fall into two main categories for me. Those that choose to see my illness as an excuse I use to get out of things, and take it personally if I have to cancel or choose to decline their invitation. And those that don’t ask because they assume I will never be able to do anything because I am ill or they think I will end up sicker. Both are not always forth coming with their feelings about the situation and so often they are gone and I know not why?  I’m starting to feel as if I need some sort of radar that allows me to pick up on this quicker and confront it sooner. That is, If I can stop telling myself stories ;)

So if this strikes a chord with any of you out there who are my or a friend of someone else who is chronically ill, please hear this. Know that if I cancel or have to choose to not do something I am very sad (having to cancel often brings about a session of frustration crying even when the person is completely understanding and lovely about it). I want nothing more to be an active part of my friend’s lives. But sadly sometimes my body will not let me be there.  On the other hand to assume that I can’t due to my illness is to see me as my illness. I know my limits and I know when it’s worth breaking them. I’m responsible for myself and perfectly capable of knowing what I can and can’t do. When assumptions are made we all miss out.  Perhaps a way to think of it is, it is my practice to learn to decline with grace and it is your practice to learn to accept those declines with grace.

There is another group of friends that I struggle with. The non-confronters. They know I am ill but they don’t want to know about it. They are not entirely comfortable in my presence. Many talk constantly. I often wonder if they are just hoping I won’t die on them or have some sort of medical emergency. But then there I go telling stories again. I don’t know why they are this way around me. Some just avoid me completely. And often I’m left feeling like the person that was me before I became ill never existed. All those happy memories of time spent together … well I guess she died? On the upside I already know what side I’m on in the zombie apocalypse ;)

But I shouldn’t make light. It hurts deep. So again if you are one of these, here’s what you need to know. I’m not my illness, but I have an illness. I’m happy to answer any genuine questions anyone has about my illness. I’m still learning to do this so if I stumble over words forgive me. I know what I need to do to keep me well and I know when I need to ask for help. I know for myself, having meet others with illnesses different to mine that understanding what to expect means I can fully let go of any worries about how to help them should the need arise. And generally speaking the need doesn’t, other than to carry something or walk a little slower or take a rest or be a compassionate friend. 

If it is none of these things and it is simply that I confront you with your immortality or the fragility of a healthy life and these things make you feel uncomfortable? I’m truly sorry and sad. It is your personal journey, something only you can confront. Know that we all die, some just earlier than others. And we all get chronically ill, It’s just some of us get to spend decades in this state and other pass through quickly.

Now back to my flawed practice. Recently I have found myself in an odd place with some friends. I’m not going into details, sorry. I have no intention of turning the ‘Interwebs’  into a courtroom. I wish only to express authentically the madness that is my thought process at the moment. So…

It could be that I have been counting people as friends that in fact were more acquaintances. I don’t truly believe that to be the case, as there have been so many life events that I have shared in with them. Maybe it’s back to the old assuming those that I love, love me in the same way? Or they have the same sense of loyalty? Maybe my sense of loyalty is antiquated? Maybe they fit into one of the categories talked about above? Maybe we have become part of the facebook trap (the old, Just because you see my comments on my life or my blog posts doesn’t mean we have had a genuine interaction or that you know what is going on in my life)? Maybe they moved on and I didn’t get the memo? Maybe they have been feeling that I’m a crap friend?  A judgmental self-centered bitch? Maybe I expect too much? Maybe I don’t expect enough? Maybe I should have confronted this a lot sooner? So many maybes …

   This bolder is: a heart in turmoil; A mind that won’t find peace; It’s tears and sadness and morning for things lost; It’s abandoned and forsaken; It’s wanting to understand when there doesn’t seem to be a way to find a truth… an answer; It is pure rage creeping in where it has never been before; I want to scream and rant and tear my hair; It’s uncomfortable and feels too dramatic; it’s not who I want to be; I can’t hold it in and I’m struggling to sit with it; a crazy maker swooped in and pushed this bolder in my way with glee in his eye, and then, perhaps, that crazy maker is me; I want to rise above it and find equanimity; and yet here it is, it is me. Raw and bruised and finding out that even though I have experienced many heart breaking things it doesn’t make me an expert in quick peaceful emotional wound healing techniques.

Love B xox

P.S. If you want to understand a little better what it is like to have a chronic illness or your having trouble explaining it to loved ones then consider reading Spoon Theory


  1. Oh lovely, my lovely beautiful, thoughtful, generous, amazing, sweet friend. I'm so sorry. Friends come and go at the best of times, and I can only imagine how much more difficult it is for you in your situation. I am your friend. I know I'm far away, but we share a lovely connection and I value your lovely good humour and your brilliant creativity. The world can be a pretty crappy place. I'm sorry. Biggest hugs ever, Sarah xxx

    1. :) Thank you. You are so sweet and caring. Your friendship means a great deal to me too. xox

  2. Hey bec, that was fantastic, you wrote it so well. Have you posted it on the chronic pain fb wall? I think everyone could get a lot out of it. It's funny,you n I have never met, yet I am more open with you than a lot of my friends & feel like you really 'get' me and understand my illness-even tho its different to always manage to make me smile, even on a crap day. (((hugs))) <3 xxxx

    1. Thank you for your incredibly kind words Michelle. xox ( I haven't shard it in chronic pain, please feel free to do so :) ) Super gentle hugs xox

  3. Really fantastic, Rebecca! I think we have a new kind of soul sisters in the world, today. I feel like family and I'm so happy to see you writing and helping others! That includes me. Be well and may Santa bring lots of extra spoonfuls for you.

    1. Thank you so much Faith. May you receive many many spoons too. xox