I am a mosaic not a cookie jar

I was thinking today about how it feels when someone sees you as something that needs to be “fixed” when you’re a chronically ill person. I’ve tried to explain this before – usually falling back on saying “I don’t need to be fixed because I’m not broken” but I’ve come to realise that explanation isn’t going to work. Because they don’t believe you. In their eyes you are broken, and no amount of telling them you’re not is going to change that.

So I started thinking about it differently. What if I am broken, but that’s not really the point?

Imagine you own a cookie jar. It’s a beautiful cookie jar, a functional one too – so big and holds those cookies so well! And it can store other stuff as well – a multi-functional jar. Maybe sometimes you make punch in it, and serve it up at dinner parties, and everyone tells you how beautiful and wonderful it is.

Then one day the cookie jar breaks. Smashes. Like irreparable - broken into a million tiny pieces, some of it is now ground into sand, smashed. You devote days – weeks – to trying to put it back together. You spend hours on the internet, and talking to repair specialists, but all of them say the same thing: “I’m sorry, but this is too broken to repair.” But you don’t believe them. You go it alone, trying glue after glue. You even try some alternative repair techniques – you origami the crap out of that jar, trying to make it hold together. 

But none of it works.

You cry. You get angry. You spend days on the floor just lying in amongst the pieces.

And then one day you accept it. Your jar is broken, and it isn’t coming back. So you pick up the pieces, and you start to make a mosaic.

There are still days when you miss the jar, but as you work, you start to realise you are making something amazing. Some days you even look at the art you are creating, and you think it is more beautiful than the cookie jar was originally. You start to love it and become proud of it.

Then someone comes to visit. They look at the mosaic. Their face falls. You broke your jar, they say.

Suddenly the mosaic you worked so hard on doesn’t seem quite so beautiful anymore. Suddenly you feel embarrassed of this thing you have been building. It seems unimportant and useless, not like the cookie jar which could hold all the things.

I know someone who’s jar got dirty, they say. They cleaned it and it was good as new.

You should go to a repair specialist, they say

You are just not trying hard enough. You could fix it if you wanted to. Think positive!

I can fix it! It just a tiny crack.

And you start to wonder if you were exaggerating. Maybe there was only one crack, and you could fix it! So you pull apart the mosaic you have spent so long building, and you are hopeful that this time you will fix it – you will have your cookie jar back! And you try, and try again to fix it. You go to the woman who washed her dirty jar, and she washes the pieces, but that doesn’t put them back together. You go to another repair specialist, but they tell you there is no hope. So you try harder, and you think positive, and you pray and hope, and try again and again… but still it is broken. 

You have to give up again.

You have to grieve again.

You have to start the process of acceptance and making something good out of the pieces right back from the beginning.

This is what it feels like when someone wants to help fix or cure chronic illnesses. It feels like they don’t see all the good you bring into the world – all the beauty you have created around the hard parts… And maybe that is not how they feel. Maybe they do think the mosaic is beautiful, they are just convinced the cookie jar is better and are sad for you that you don't have it anymore. But that is not for them to decide, and it’s pointless and kind of hurtful to keep bringing it up when the cookie jar is gone.

I know that people are trying to help when they suggest fixes for my illnesses, and I do appreciate that they are wanting to make things easier for me. But there is a big difference between “This will fix you” and “I wonder if this might help?” and also a big difference between suggesting something and insisting that someone must try it. I don’t mind when people make suggestions – some of them I am really thankful for – but I do need people to do it in a way that respects the life I have now.

I am done searching for that cookie jar. I love the mosaic my life has become, and I’m not looking to go back. But if you can suggest a gloss that will make my pieces a bit shinier… then by all means tell me about it. I'm all for shiny pieces.

Thanks for reading,
Little Miss Autoimmune