One year on

I sometimes hesitate with posting a blog, because I feel that maybe if I wait, I will feel different in a week or so. And that is probably the case, as my feelings change quite frequently. But then I remember that the very reason for this blog is to share my heart and journey of life- in all things, good and bad. So bear with me again as I try to articulate messy musings.

Since my last post, I have not had the best time. Actually, to be fair, I’ve been involved in some pretty awesome events, like going to the ANZAC dawn parade in Hyde Park, going to Poole to see friends, and going to see Brooke Fraser in London. But I have also had a series of other events (which I won’t go into until my head is a little less fuzzy), which have thrown me off kilter a little.

In the space of a week or two, I have had couple of big melt-downs (but hurrah I can safely say I have lived through them). It is in the middle of the melt-downs when things escalate; all because I don’t feel like I can justify feeling sad or sorry for myself. Then I get annoyed at myself for feeling that way in the first place and the self-hatred cycle is fed.

I have just celebrated one year being surgical-free, and for those who know me well, you know this is a miracle. Although it has brought back some awful flash backs and sleepless nights (it seems as if I still need to work on ways with coping with PTSD) it has also given me perspective when struggling with my everyday life. It is easy for me to say I’m finding it “hard” at the moment – but I have to keep questioning myself with, “hard compared to what?” If we re-wind a year – my life is certainly not as hard as it was this time last year – when I was literally fighting to stay breathing. Or it’s not as hard as the months that followed where I tried to find my sanity (in which some of you would argue I never had!) Or its not as hard as X,Y or Z. Or it’s not as hard as some-one else.
I think I find the saying, “Someone is always worse-off than you” both peaceful and frustrating. Peaceful, because it can add perspective- while I am caught up in the moment feeling like I can’t go on, I remember those people who are fighting to have a smidgen of the life I live. I just have to take one look at my life as a whole to remember how blessed I am. But the saying causes frustration too, because it can cause the thought that your feeling is not valid.

The night before ANZAC day, I met up with two close kiwi-friends, Amelia and Livi. We went to a super cool secret cocktail bar in London, and Amelia didn’t tell us about it. I was super confused that we were in a real detectives office – but then they took us through a hidden bookshelf wall and into one of the coolest bars I’ve been to. I love how a bit of alcohol seems to always get us girls talking beyond surface level. We had quite lengthy discussions about how we find rest in the fact knowing someone has it worse, and made each other feel better about our lives. I realised I certainly wasn’t alone in the feeling unjustified for feeling sad. That we all said, “oh but that isn’t anything compared to you…”

It happens quite regularly actually, where somebody will be telling me how sore their back is, but then they stop and go, “sorry, I can’t complain to you.” I always try to reassure my friends that they can, at that any “pain” is valid, because it is relative to you. If the worst pain you have felt is a paper cut, then that pain is bad. I was reminded of this recently when Elliot hurt his foot bowling. Once we had found that it wasn’t broken, I encouraged him to keep it moving in between elevating and ice-ing it (okay – maybe encouraging him to walk all over Edinburgh was a tad too much – but with a beautiful city it was worth it I hope!) I would like to think empathy is one of my strengths, but this event highlighted to me that I have to remember my own advice, and that pain is relative. To remember that Elliot’s sprained ankle, was as much pain as he’d ever experienced, and so that could be as bad as the most painful thing I had been through. And that the most pain I have experienced, is nothing compared to the next person.

Another night this week I went out for a girly night with a new friend called Reka. Pain being relative some-how popped up in conversation again, and it felt free-ing to share so much with a new friend, and feel assured that I am definitely not alone. After dinner we went to see Cinderella, and I had a little giggle when she meets the prince in forest and says, “It’s not so very bad, others have it worse I’m sure. We must simply have courage and be kind.”

As silly as it might sound, Cinderella made me re-evaluate my personality. I think I sometimes forget to be kind, and I certainly find it easy to forget my courage. I feel too self-conscious in thinking that I’m talking about hospital or Marfan’s too much, and I forget that it can sometimes be helpful for others. I admit I do need to work on the art of not talking about it too much, but this is hard to do, as I can’t erase the past. And, when you spasm and dislocate something in front of new friends, and explanation that it is “normal” and ok for me is definitely needed. I know that my constant pain is a reminder that can’t do as much as some people, but it is also a constant reminder I can do a lot more than some other people.

A quote from Stephen Chhosky in The Perks of Being a Wallflower sums up the way I’m feeling quite well, “And even if somebody else has it much worse, that doesn’t really change the fact that you have what you have. Good and bad.” So in remembering that everything is relative, I will also remember to be kind to myself, and that it is ok to have a melt-down – but the most important thing is to recover from this and focus on the good again.

Until next time

Keira xo


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