I always imagined walking down the aisle, with my Grandad, to ‘Gabriels Oboe’.
My most favourite piece of music.
I never imagined at the age of 30 I would have planned my funeral and that instead of planning for walking towards someone who felt I was worthy of marrying, I would be thinking about the fact that I want my coffin taking in and out of church to that same piece of music.
At the moment it feels like death might come before marriage.
And I never imagined that.
Well, maybe I did, once before. 7/8 years ago when my world felt very black … but since then I’ve started to live life again.
I rediscovered hope. I rediscovered faith. I rediscovered what it means to wake up in the morning and be glad to be alive. I rediscovered what it is to smile again. Properly smile, not the fake ‘through gritted teeth’ or ‘pretend’ smile. And to laugh again.
So at the moment it is all a bit weird – because I’m finding myself in a place where to be alive feels too good and too precious to give up on, but yet I have had to spend time wondering if eventually I’ll have no choice.
Sometimes when I start my day I wonder if this is going to be the day that I die.
I wonder if It’ll be the day I have an asthma attack that they actually cant get on top of.
I’ve more than a few now that have gotten pretty close …
I wonder if this will be the day when my body is allergic to something that closes my airways or that I react so badly to, I just die.
I wonder if there is something more serious going on that no one has been able to identify which is why I am now seeing more consultsants, and facing even more tests.
I wonder if, when a few weeks ago one of my Consultants told me about mast cell disorder and that there are indicators that could suggest something much more serious than that if I have cancer. And if I’m going to die.
I’m not sure if I have ever thought about dying so much.
I was never really conscious of breathing. You know, that thing we all do, thousands of times a day. We breathe in. We breathe out. We take absolutely no notice. Well, most of us don’t. I never did. Until the first day I found myself unable to breathe.
Then I became pretty conscious of it.
Someone from recently told me I am like a cat with ‘9 lives’. I think I’m pretty close to that now … and then what …?
What happens when the nine lives have been used up – is that death?
I don’t know. At the moment I don’t know a lot.
But I do know I don’t want to die.
I do know, that despite the scars of a life before turning 30 that I am glad to be alive. And I don’t want to die.
I also know that I am a fighter.
On those days when I don’t want to get up and face the world, somehow I have to keep fighting.
On the days when I have absolutely no energy and I wake up and bury my head under the pillow for a few extra minutes that I somehow I have to keep fighting.
On the days when yet another hospital appointment feels like it might tip me over the edge, I have to keep on fighting.
I have to keep on fighting. Because if I don’t, then I might as well be dead.
Some days the fight looks like crying.
Some days the fight looks like wanting to have a tantrum.
Some days the fight looks like allowing myself to be looked after by other people.
Some days the fight looks like looking quite well and being able to go out.
Some days the fight looks like sleeping all day because I have no energy for anything else.
Some days the fight looks like writing.
Some days the fight looks like being the positive, strong and resisilent Helen lots of you know.
Some days the fight looks like reading my bible, praying, worshipping God.
Some days the fight looks like asking God why.
Some days the fight looks like being surrounded by my church family and friends and being together corporately to praise and learn about the One who has given us life.
Some days the fight looks easier than other days.
Some days the fight looks harder than other days.
Each day is different. But I know with each sun rise in the morning, comes a new day.
A new breath. For that moment, for that minute, for that hour. For that day.
And I am thankful for that.
You had me at Gabriel’s Oboe it’s a piece of music that was a clear marker on the road to emotional (ongoing) healing for me.
I wish you didn’t have to fight so but I love seeing how God & your people are holding you through. Xx
Incredible words, Helen, thank you for sharing them. What a difficult and painful place to be but I’m so glad that you still fighting. None of us want to lose you and if there’s any meaningful way we can join in the fight with you, we will. For someone like me, I think that will be praying for you and holding you in the light and love of God xx
This is overwhelmingly positive and brave. What a journey you’re on both with faith and with health. [‘]