Thursday 28 December 2017

Darkness There and Nothing More

I sang my Grandma to sleep.

It was the first of September, she was in hospital, we hadn't long lost Grandad. It very quickly went from Grandma being in hospital with a gouty foot, to Grandad being rushed into hospital, to him being released home with palliative care, to him being none responsive, to him dying, to Grandma loosing her leg, to them giving us a good prognosis, to them finding a clot, to them giving us an iffy prognosis, to them calling us in for her last day on earth. All within 2 weeks.

We were with them as many hours of the day we could manage, me, my brother, my sister, both their partners and my dad. I was at work when granddad passed - holding my dads hand but not knowing anything but the dulled pain and semi drug induced unconsciousness meant to help him escape it.
We flocked to them as soon as we heard, and held each other together, not knowing how to break to news to a still hospitalised grandma.
How do you tell someone fretting over their own health that their husband, the person they share a majority of their life with, the person who cared for them every day for the last ten years after they had a stroke and could no longer look after their self, has passed away without them having the chance to say goodbye?

But we did, we came to her en-masse (always a bad sign in our family), we held her while she sobbed and wondered over how to continue living.

We were all on compassionate leave for Grandad when we got the call from the hospital that Grandma was on her last leg (pun intended).

So there we were, clustered around her in the side room, away from any strangers who might gawk at her passing. Her steady stream of visitors, mainly nursing staff, had been a constant support throughout her stay, and they continued to filter in throughout the day - each one offering refills on coffee, tea, anything they could think of. Each one tearfully admitting she was their favourite before dismissing themselves from the room to try their best not to add to our grief by letting theirs show.

My brother put on music, his phone sounding small and tinny over the constant drone of a gas outlet pipe not far from her hospital window. A steady stream of the beetles, her favourite band, followed by some smooth jazz mixes, then back to the beetles.
We took it in turns to take breaks, splitting off into pairs. Two of us popping down to stretch our legs, gather supplies from the shop, pee, breathe, focus, pull ourselves back together - then brightly returning to relieve the other two to do the same. But most of the time we were all together.

We had ended up with a bottle of Baileys - her favourite drink - brought with us in the hopes that she'd be able to sneak a last drink in with us. As it was, she never woke up that day, except to occasionally stir when the pain got too much, crying for her mother in her sleep. In our gentle duty of keeping her lips moist with the combination of a slightly damp cloth and a small pot of Vaseline I asked to wet her lips with the baileys. Giving her one last taste of the drink, a neat parallel to the first taste of it she had given me on my dummy as a babe.

My sister left and returned from home with things to make her feel, even in her sleep, that she was home again. All she had wanted towards the end was to go home, the same as Grandad.
Her blanket from home, a stuffed animal, even one of her own pillows. Mixed in with the sound of her family and some music - we hoped it was enough to trick her unconscious mind into thinking we had gotten her home.

As the evening drew on, and our sporadic laughter and reminiscence became less stilted and less frequent, during one of our breaks, while my brother and father snuck out for a cigarette and my sister and I sat by her side stroking her hair and holding her hands I turned the music off and began to sing to her. Just Swing Low, though I tried a couple other songs and simply forgot the lyrics. Sticking with Swing Low meant less to remember. At first my sister joined in, while I stroked my Grandmas hair, watching her breathing even out from the laboured and painful gasps to a slow, and uneven sigh. My brother and father drifted back in and encouraged me to keep singing, despite my apologies for turning the music off. It had just felt right to sing.

And so, with my family crying quietly, sniffling around me, and my grandma's final breaths slipping away in front of me, I sang. Over and over the verses repeated themselves, my voice cracking as I could no longer see her chest rise and fall, but only watch the fading pulse in her neck.
Eventually I stopped and whispered that I thought she was gone, and suddenly we were all hugging, our tears coming freely finally.

I never thought it would be so hard though, to sing to her. Or to try not to remember all the time.
Before, the only death I had known was sudden, unexpected, and after the fact. Even watching my Grandad fade away didn't prepare me for the emotional onslaught of that day.
And no one seems to understand how broken it made me feel. It was a beautiful thing to do, I've been told a hundred times. When I tell people I sang her to her final sleep they say that it's nice. But it was heart breaking.

I now know the difference between loosing someone and holding their hand as they die.
It's a lesson I hope my nieces and nephews, or my children (if they should become more than figments of my imagination) never have to learn. I never want them to feel this. It's bad enough that they will have to loose people - hell, my nieces and nephews have lost more than their fair share already.

I don't regret any of it. That's something that I should really point out at this time.
I would do it again in a heartbeat. To know that she left peacefully, surrounded by love - it's all any of us could really ask for (except maybe a warriors death filled with honour and the blood of our enemies). Part of me felt obliged to step in where Grandad no longer could, too. One last act to make him proud.

Odd, my life continues through each dark day with the promise to live for those still in my life; my family, my friends, my nearest and dearest... yet my accomplishments are mostly things I do in the hopes they would have made the people I have lost proud. My Mum, my Granddad - they were the ones I looked up to, the ones whose praise really counted because it had to be earned.

Now I look to my brother and sister. My guiding stars in all this chaos.
They support me even as they fall apart themselves. Holding me up through my pain and misery, even if it means buoying me up on their own tears. I'll never understand why they are so good to me, why they love me so intensely - but I love them back just as fiercely. That feeling of not deserving the level of kindness and caring they bestow on me without a second thought. Of not being good enough to possibly be allowed to accept that level of unconditional love.

It's that feeling, that emptiness, that darkness inside me which reflects the holes in my life that the people I've lost have left. Not just those who have died, but those who have moved away, those who have lost touch. Those people whose lives I built my being around. In life, I have defined myself more by the people I care for and about, than I have by the things I do or preferences I may have. My obstinance, determination to go against the grain, and know-it-all attitude comes from trying to impress several of those people. My patience and empathy developed from trying to emulate the people I admired.

In a way, the holes they have left in leaving are like footprints in the sand, leaving impressions on me that sometimes get mixed in with the cement and stay with me forever, and sometimes slowly fill with water and fade away. I try to keep only the good bits, and let the ocean of time steal away the bad ones. Hopefully one day that ocean will wash enough sand away to reveal the gemstone heart I want so desperately to have or be. But maybe that's not for time to tell, but for me to forge. For though I hope to know, at the end of my days, that dark is right - I want to fork lighting with my words before I go.

As always - Blessed Be xx

Wednesday 11 January 2017

Rain Drops and Roses

Today is not a good day.

I've been dating the most wonderful woman lately. She's funny, smart, beautiful and kind. She challenges me, supports me, makes me want to be better than I am and believe that I'm good enough for the first time in a long time. We have fun together, and snuggle up to watch tv. We do crafty bits together and cook together and spend as much time together as possible.

But there's a hitch to this fairytale. She has MS.

If you don't know, MS stands for multiple sclerosis, and it's an auto immune disease which enjoys targeting the central nervous system and the brain. Apart from the fact it causes my dream girl to suffer from brain fog and confusion, occasional paralysis of part of her face, and has completely taken the use of her legs, what this disease mostly does is cause her pain. Excruciating, unbearable pain. And let me tell you now, one of the hardest things in this life is seeing someone you love in pain. Especially when there is nothing you can do about it.

One of the other hardest things in this life is seeing fear in your lovers eyes as they clutch their head in pain and stutter out a description of some new pain and odd sensation that they have never dealt with before.

Most of the problems MS causes, such as the painand mobility problems, are generated through lesions on the spine and brain.
So every time a new symptom appears  (and stays) it tends to mean there is a new lesion. And the fun thing about lesions is that they get worse. And worse.
So, for example, a lesion in your Cspine could worsen until you were paralysed from the neck down. One in the speech centre of your brain could worsen until you could no longer speak. One in your ocular center could eventually blind you. And so on.

Not only is all of the above true, but - as with any illness - it gets worse when you don't feel well.

It's been months now, and neither of us can shake this cold/chest infection. But tonight seems to have worn her down too much.

The pain is so bad she keeps bursting in to tears. Her speech so slurred she can't stand the sound of her own voice. And all I can do is hold her while she cries.

No. Today is not a good day.

As selfish as it is, it's so hard. There's been no one to talk to about it.
There's no way to vent.
So this is me venting.

It isn't fair.

It isn't fair that our lives have always interacted in these little ways that we never knew about. It isn't fair that we both got stuck with assholes through our lives when we could have been together from day one. It isn't fair that we never got to dance together. It isn't fair that this stupid illness has taken the mind and mobility of the woman I love before I got to hold her and love her. It isn't fair that I am helpless when she's in pain. It isn't fair that I watch it take her away one piece at a time, and I wake in the night terrified I'll have lost her completely.

And it's not fair that she's worth it.

Because she is. She's worth every bad day. Every sleepless night. Every frustration. All of it. I'm not going to give her up. Not even if I end up with only a thousandth of who she was. Because she is perfect. She has my heart. And even the tiniest part of her is still incredible, and I am honoured to be with her.

Tomorrow might be a good day. I hope so. Until the next good day I'll focus on the good things. The warm woollen mittens. The puppies and kittens.

Keep your head up. Thank you for letting me vent.
Remember to smile on impact.

Blessed Be xx