Another angel at my table

I am, right now, stuck in that stinking, mephitic mire that is grief. It is as though I am cemented to the one place. Just about everything hurts, and just about everything makes me cry. Some photographs arrived in my inbox around lunchtime, and that mallet of sorrow swung a blow so hard that I lost my breath. Tonight, my eyelids are heavy, and the circles under them tomorrow will make my face look overcast and I will feel bone cold despite the spring. I am finding that optimism is just one more step into fear, and that I am a heavy peg that just doesn’t want to fit.

On Friday morning, I’m getting out of the city for a few days to celebrate the birthday of one of my best friends. This time last year I was in Barcaldine and Nic and her husband were about to join me at the cattle station I was staying, where they got to meet my friend Meagan’s family. Meagan died from CF in May 1999. Her ashes lay in a granite boulder at the family homestead under a weeping willow, and I’m looking forward to getting back out before too long, for it is always too long between visits.

I haven’t written for some time, and in that time, one of my oldest friends has died from Cystic Fibrosis. I am yet to work out whether Sean is number sixty-nine or seventy, but I know that he would have preferred to be sixty-nine because he was a dirty bastard.

About ten days before I went down to Melbourne to see Sean, we had an incredible two hour conversation. I was taken aback by his energy. He was enjoying having his family at home with him before he went to the hospice where he would die. We talked about our fuck tonne of dead friends (because there is a fuck tonne); about his greatest loves, all of who had CF and had died long ago, and what we used to get up to as kids. He said that after all the friends we’d lost, he’d always wanted just one sign. ‘Just one person to come back so I know that there’s more to this. Just one person so I know they’re there’, he said. I told him about the visit I had from our friend Rachel Murphy when I was around six. He was stunned – and a little pissed off, I think. He just wanted there to be something. Just not nothing. I told him there was something; he was still very unsure.

When I got to Melbourne, my dear friend Camille picked me up from the airport. It was a Sunday, so we headed to a homely and hipster little place where we sat by a booming fire. Cam has also had a double lung transplant, and we shared an afternoon of secret women’s business by that fire. We CACKED ourselves silly for a couple of hours and both enjoyed some highly diabetic-unfriendly food.

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By the time we got back to her place, it was night time so I thought it best I call Sean’s sister, Shannon. She asked if I could get there as soon as I could? He was fading fast and wasn’t expected to see through the night after having been put on a morphine pump that day. We had about a forty minute drive ahead of us, but it was Sunday – the traffic was light, but Cam still ran a red light did some quality organ donor driving while I willed Sean not to leave me without getting to say goodbye.

‘You’d better not fucking die on me’, I kept saying. ‘Don’t you fucking dare.’

We reached the hospice where I was met by Shannon’s husband, Troy. There were a few close friends and family in the waiting area who had spent some time with Sean, and Shannon basically pushed me into the room and said to spend as long as I needed. I walked into the darkened room. His breathing was fucked. I knew he was fucked. His mouth was open. I sat beside him and stroked his hair. I said quietly, ‘Hey Seany. It’s me, Carly. I’m here, sweetie. I made it.’ Not immediately, but after I’d said his name a few times and given his head a rub, he started to wake up. He said my name, and I just kept saying, ‘I’m here, I’m here mate. I love you.’ 

And then he began to talk. We talked about sex and politics; he said the entire front bench were useless, with which I agreed. Then, holding my hand he said, ‘Everyone’s here. Everyone’s here and they’re looking at you.’ He’d got what he wanted. A sign, if you will, and what a crowded sign it would have been. All of our friends, his early loves Rachel, Carolyn, and Leanne and his last great love, Veronica. I looked up and whispered, ‘Hi’ to acknowledge our friends who had surrounded us. I felt them there. The air was buzzing with an energy I’ve only experienced a few times in my life, and I silently thanked them for being there to ferry Sean on his way.

His sister Shannon and his friend Kate came in, and we had a Baileys. Sean wanted a Baileys coffee, so I gently placed a palm behind his head and encircled the other around the cup, which he swiftly brushed away, determined to drink it himself, HIS way. And here’s where I understood why. Here was a man – a real man – who had so desperately wanted to die with dignity. And to die with speed. I spent some more time with him, got the nurse to give him more pain relief, then left thinking that by the time I got to him the following morning, he’d be gone, or very close to. He told me he was happy, and I said I’d see him in the morning. Our last words were, ‘I love you’ – the best anyone could hope for. Camille drove us home and we had cuddles on the couch with her dog until just before midnight.

I didn’t sleep. My head may have felt like a medicine ball, but I was still in the room with my friend – and all of our friends. My body was buzzing with pings of energy, and I could see sparks firing off my skin in the dark.

*

When I arrived at the hospice the next morning, Sean was sitting up in bed, fully cognisant (think intelligent, rude and witty) and eating. He had not long ceased taking all of his medication and wasn’t having any artificial feeding so he could control his dying process and make it as short as possible. It was now I began to wonder how fast it would be if he was still eating and fuelling his body. When you’ve grown up surrounded by dying, and  dying and death is your vocation, you tend to ponder about things like this. He ate his entire lunch; even closely inspecting the viscosity of the pumpkin soup. It was then I realised that he needed more morphine and a relaxant to make him more comfortable. The nurses agreed. I know the trajectory of a CF death like the topography of my own breasts, and so he was given a higher dose and by the time I left later that afternoon, he was quite sedated.

Not long after lunch, we were introduced to a lovely lady who was taking photos for the hospice who were updating their website. We were so grateful for the fortuity and relief it provided for those of us who were in the room. Sean had never been camera shy. Below is one shot that Sean’s brother-in-law took while we were snuggling. He cracked dirty jokes and grabbed my ass 😉 For someone who’s dying, I think he looks fucking spectacular.

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When the shots from the photographer popped into my inbox today, I proceeded to completely lose my shit, particularly over this one, because I feel as though he is  comforting me, when I should have been comforting him. 

the comforter being comforted

Sean never regained consciousness and died just after midnight on Saturday 9th August. I was able to see him one more time, but by this stage he was deep in the warmth of a CF coma. It surprised and upset me that it took him so long to die. What didn’t upset or surprise me was that he wanted to die alone. He didn’t want anyone seeing his last breaths. As usual, but most importantly and as he wanted, Sean was in full control.

Over the last couple of weeks, I’ve come to learn more about Sean than he had ever told me. Mostly because he was modest and we were too busy trying to outdo each other with dirty jokes. He was one of Stanford University’s ‘who’s who’ – an invitation only club of great minds from around the world. Doctors and professors spoke at his funeral in Melbourne, and on the 23rd August, we had a memorial for Sean’s Brisbane family and friends, so this was to be my first time as a celebrant.

I had been doing well up until I sat down for the photo montage that Sean’s sister Shannon had put together. When I saw the photos of his transplant recovery, I was fine. And then all of a sudden I wasn’t. I walked back to the lectern and expressed my excitement, happiness and cherished relief that Sean had received his second chance just seven days after I had received mine. The day before Sean’s memorial marked sixteen years since I had my transplant. I had felt strange for having celebrated it, and then guilty because I wasn’t celebrating and I was alive and Sean was not. I took a sharp intake of breath to seal off any more tears, but the levy broke and a rush of tears descended, which would have been awful for everyone there because I look like a drowned hog when I cry.

I’ll always remember Sean as the tall, skinny, lanky kid who grew up too fast, simply because of our illness and his place in life. I also hadn’t known how much he had suffered at the hands of bullies in school. I wanted to scream when I heard his brother speak of this. I wanted to know every last asshole who had teased or tried to fight him. I was enraged and devastated that this had happened to my friend and I began to feel indignant with the world. Why did this have to happen to Sean? I will never understand. Suffice to say, kids will be kids. And kids can be assholes.

And so here I am. Anchored to grief. In fact, my skin stings from it. The hurt trickles into every crack and it permeates every cell of your being. You physically hurt. You ache. It’s like ripping yourself off narcotics when you’re addicted. I thought I was prepared and now I don’t know how to go on, except that I have to. I have study to do, a body to nurture, books to write, a soul to feed, family and friends. I can’t help but feel like an empty vessel. But then I think about those who aren’t even close to treading water – the sinking stones of this world. I want to pick them up, but can’t. I’m in the water with them, but they’re out of my reach.

And you know what? Sean would be PISSED OFF. He may have wanted people to be sad, but not like this.

16 thoughts on “Another angel at my table

  1. Dear Carly, as we know, there are many things we will never know WHY? I wish I could say more now but once again, you have taken my words away! My love is with you now and in the future. xoxo

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  2. I was put on to your blog via facebook by the lovely CurlyPops (who doesn’t know me BTW) This post had me glued, I had to keep reading it even though I knew the end, even though I could barely see through the tears. What a beautifully written personal experience, so real I would almost think I was there. I’m sorry for your loss and fly free Sean!

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    1. I am SO sorry that I’ve taken more than a year to get back to you, Naomi! I went a little underground after I wrote this piece. Thank you so much for your beautiful and encouraging words 🙂 Big love to you XO

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    1. It’s so comforting to read this after a year (I’m so sorry, Lees!!). Thank you so much, my love. I now have Sean’s ashes in my bathroom so he gets a show every night 😉 XOXO

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  3. It’s the being left behind in that big morass of grief that’s the hardest thing, I think. I’m glad Sean got his sign. I know that the place we go after this life is vibrant and rich, and filled with loved ones. He’ll sure be busy, right now, catching up with them all. Loneliness is what we have here – those of us who remain when a loved one crosses over. We are the ones who hurt, who experience that visceral agony of grief. But how could you not feel that pain, having loved so much?

    I’m holding you and Sean’s family and friends in my prayers and meditation.

    This weekend we’ll eat cake and celebrate the shit out of life, and remember our beautiful, beautiful friends who’ve gone before us.

    Love you xoxoxo

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    1. Your words always bring great comfort. I think the hardest thing is that because Sean was my oldest living friend, I foolishly thought he would always be ok and not die. Yes – let’s celebrate the shit out of life on the weekend! We both deserve to. Love you xoxo

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  4. Geez…. I have no adequate words Carly. Except to say I feel regretful to have lost touch with such a loyal, strong and beautiful human being such as you. I found it REALLY hard to read this story but at the same time couldn’t stop myself. I have never and will never forget when Ineka died, and I didn’t even know her the way you and the other CF patients did. She was just one of so many CF angels who have flown, so I can’t imagine the heartache for you every time another gets their wings. Thinking of you beautiful girl and would love to see you when you are ready. Xxx (Sean sure had good taste in requesting Baileys and coffee!).

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