16 Years On

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If you must work,
Work to leave some part of you on this earth
If you must live, darling one.

Just live.

Keaton Henson – You

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Yesterday was my transplant anniversary. Sixteen years ago I was battling to live. Without the bone marrow transplant, I would die from my leukaemia. Having it could have led to the same end game.

I never quite know how to feel on my transplant anniversary. There is too much tied up in that single day. So many memories, so many emotions. Regret at the life I have led since. Fear at what the future brings. Hate for the depression and anxiety it triggered in me. Joy at being here still.

Yesterday for the first time ever I forgot. I did not wake up in the morning with the anniversary the first thought pressing away at my mind. I did eventually remember and when I did, I mourned deeply like I haven’t for a long time.

People see me as a survivor, as someone brave. Most people seem to have forgotten that it ever happened to me. I never forget. Even 16 years on. I was not brave. It was not a choice. I had something living in me that would kill me. I could either let it or I could have treatment. That was my choice. Not being ill or surviving it.

People see the happiness of me still being here. Being alive.

And I do too.

I am here. I am alive when many others have not been so lucky. I breathe, I smile, I cry. I live. And that is more wonderful than I could ever put into words.

But I also see the scars. I see the physical ones when I look in the mirror. The scar from my hickman line, the loss of pigment in my skin and hair resulting in patchy skin and white eyebrows. I feel it in my hands that are so bone achingly cold sometimes.

I feel scars too. The fear when I think about the minute possibility of the leukaemia returning or the long term effects of my treatment. I mourn for the me I was before. I live every day with what it has cost me, the price I paid for it with my mental health. I carry the constant reminder that my brother (my donor) is no longer alive. That he could not save me again if it did return. The bittersweet knowledge that in some way he is still alive in me.

There are many scars. I wish I could forget them. That I had found the meaningful new way of life post-transplant that I see so often in inspirational stories about people who have, like me, faced death.

But I haven’t. I am still stuck trying to find my answer to dealing with my post-transplant life.

I am still here though. And I need to find a way to live this life

This is not sadness

Photo by Nic Low on Unsplash

The words ‘depressed’ and ‘depression’ get used too much. And at the same time not enough. Mental health is still not talked about enough, the support provided is still not enough and the understanding from society is still not enough.

These words though have been accepted better than any person with a mental illness. They have become part of our everyday language, become something less than what these words truly stand for.

People use them for when they are sad.

Depression is not sadness.

It does not go away after a good night’s sleep. You cannot make it disappear by ‘thinking positive or happy thoughts’. It is not a choice or someone just being miserable. It is not the feeling when your football team is not doing well or there is not enough money to go out for the night. It is not solved by ice cream, a big engulfing hug or the smiles of friends.

It is not sadness.

It will not simply go away tomorrow. It is bone crushing weight. A low that never leaves. Something that saps all things happy, positive or worthwhile out of you. It is emptiness. It is bleakness. It is despair. It is wondering whether you will ever feel that lightness in your body again. If you will wake up in the morning without that weight deep inside. It is loneliness. It is not being alone. It is not caring enough or seeing the point in bothering. It is questioning everything in your life. It is wanting to be out of your own skin. It is desperately seeking something, someone that will save you from feeling like this.

It is not an emotion. It is an illness.

Be careful using these words. Don’t take away from the weight they carry.

Everyone gets sad.

This is not sadness.

 

And we change.

Photo by Redd Angelo on Unsplash

We feel as if we stay the same. Yet we change. We change all the time. Often in little ways. Changes so small they pass unnoticed. Life is change. 

Sometimes the change is so big, it blindsides us. Makes us question who we are, have been and will be. Rocks us to our very core, shattering and knocking us off balance.

We change.

Sometimes behind a big change lies a big reason. A big loss be it death, heartbreak, work or any other of the multitude of ways in which loss makes its presence in our lives. Forcing us to revaluate, rebuild, renew.

And we change.

Sometimes it is the little things that do us in. We are undone in the whisper of a moment. The lyrics of a song, a scene in a film, a spoken conversation about nothing and everything, a caught glimpse, a stray thought. We may not even know it at the time. Until we unravel.

And we change.

Sometimes the answer for what or why is unknown. It just happens.

The question is – what are we going to do about it?

September Earworms

Writing this little post about earworms made me think about the songs that burrow into my head. Why they get there. What they give me. So in my head popped the idea of making a regular note of them. To share with you what tunes have enveloped me, burrowed into my bones and got me tapping my toes.

So I’m gonna try doing a ‘here’s my monthly earworms’ type of thing.

Until I or you get bored.

‘Back to December’ by Taylor Swift – remains my go to sleep song. I often read late into the night at the moment unable to consider sleeping until weariness sluggishly moves through me. Even then on turning out the light, my mind clicks into overdrive and sleep starts to flee. This song stops that virtually every single time.

‘Dancing with Myself’ by Billy Idol – an 80’s classic (in my oh so humble opinion) that nudged its way into my head after seeing it mentioned in a fanfiction I was reading. It set my toes a tapping for a few days and continues to have a little blast from time to time.

‘I’m Not Gonna Teach Your Boyfriend How To Dance With You‘ by Black Kids – No reason behind this one I think other than it is one of favourite tunes to have a little groove to and puts a happy little smile on my face. I heard it on my Ipod. It stayed in my head.

‘A Thousand Years’ by Christina Perri –  Another one of those heard-it-on-something-and-now-it won’t-leave-me-alone type of songs. Pops in and out of my head a little. Don’t think it will be a stayer.

‘There Was a Man of Double Deed’ – another example of the odd earworms my mind seems to delight in. I binge watched every single episode of The Fall recently leaving me with hearing Paul Spector reciting this poem in my head over and over again. Odd, disturbing, delivered with evil intent. It echoes round my head from time to time seeming to ground me in a way I cannot explain.

Tom Hickox – still remains wound into the fibres of my body. His music and voice often accompanies me on my walks. So I hear his stuff pretty often in my head. It can be any one of his songs though my utter favourite ‘Out of the Warzone’ is a frequent visitor as is the heartbreakingly tender ‘Let Me Be Your Lover’. My continuing obsession with his music has probably left less time for my more random earworms this month.

So that was September’s hits –  wonder what October will bring (gods! how are we in October already…)