“SINCE YOU”
this is a peice of correspondence that me and my friend maddy wanted share with you all. maddy is the reason i made this blog, she is the reason i am trying so hard to re-evaluate how i live with this illness. she wrote me to tell me that my journals effected her and made her feel understood. she wrote me to tell me she believed in me. this is from our most recent letters.
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7 hours ago
Alexandra Madeline Barber
Ola chicka! Still here, remarkably- still walking a little, here and there- mum makes me, I lost my ability to walk a little while ago, they think I had a mini stroke- who knows what the hell it was, but I had to learn how to move again- it was the strangest thing. I was being spoon fed and everything- and I couldn’t actually say “Hey guys, this is fucked-up! ” because I couldn’t speak- I was trapped in my head, and noway to communicate- that was really bad. Soon enough with my own willpower I was saying “heyyyy!! STOPPP” so I am their little miracle. Though, I am tired of being people’s ‘mysteries’ and ‘miracles’ I wish I was just a clean book/cut case. Someone very sterile and boring yeknow? I can still drive my little car- though it takes a stellar effort, and I won’t do it unless I have a real purpose too, otherwise- it’s a whole lot of bed, and chair, and bed. Putting on a tshirt- pretty much doing anything feels like the greatest iron man triathalon. Shaking the crumbs off my bed I just can’t do. I’d managed to maintain my weight at my last lung function, which was such a blessing and miracle to me- but it was only by eating superhuman amounts of food- something that is SO hard to maintain, you know what it’s like swallowing food with the texture of phlegm and the taste of blood in your mouth? Ugh. You just want to lie there perfectly still- like a sadist statue, with your thoughts on the feeling swirling around and draining up and down your windpipe with the feeling of sickness. I am starting to get very reminiscent, very wistful when I see things, scenarios- both playing outside if I’m taken out, and in the hospital, families- babies. I see my brother playing with hsi son (my apple of my eye, my little nephew) full of vigour and energy and laughter- remembering when I could ride a bike and play netball, do things- and knowing in my heart there is very little if any hope I’ll ever be able to do that, with him- to show him. He’ll never know his aunty at her full potential- just the “Be careful of aunty mads sebastian, you might break her!! CAREFUL! WATCH OUT!! Let her rest” that’s hurting my heart, and I feel like I’ve failed him, and the world- everbody in so many ways. CF is truly the biggest, cruelest thief I’ve ever known.
One of my best friends passed away on Christmas day, she had been transplanted- and was in rejection- but nobody knew, not even her- that she was ‘really bad’ her doctors had seen no indication that she was ‘on the way out’ in the immediate future.
I’ve been writing my poems- my thoughts, or at least I’ve been able to collect them in my head a little better. I had the loveliest christmas with my mum and my family. I am grateful, for so many things. I’m also sad for a lot, particularly the deaths of my friends- but I know that their suffering and this huge struggle is over.
I would still love to see you, and one of my friends is probably going into monash- so I will be along there soon probably, and if not- i’m due for one last ’hurrah’ road trip. Would you like a visit? I could bring you anything you like, I’m known to bring ‘care packages’ as I always wished people would bring me something small and I cherish it- even if it is a box of chocolates, people don’t realise that ‘though WE should/could be used to it, you never ever get ‘used’ to the sterility and the fear that comes from being in hospital. It’s something people, ‘normal’ people- could never understand. They ALWAYS get to go home, with me-and with you, there’s always the possibility we don’t leave those walls, and become another victim to the CF death toll.
Sorry for the morbiditiy- I am so impressed by your strength. I think you have the coolest look about you- you are so different, so unique- it makes me pretty chuffed to be so close to you- and say “Oh hey, I know Grant ” You are a VERY special human being.
I treasure our friendship so very much- thankyou for being there for me, and for listening to these scribblings from a very old, very young soul.
from Alexandra Madeline Barber- Age 20, nearly 21 in 8 days.
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2 hours ago
Grant Gronewold
i am so sorry to hear of your stroke, i hope it was ok and if you want talk about the experience more i am here to support, uplift and increase you my love/ == our love is real = all love is real. strokes iz jokes when we roll up, right babe? i love you.
i have read about the deaths you are talking about online, i follow you on facebook alot (STALKER) and i know how it must hurt, it draws me close to tears when i read of it. but know that when you cry it travels the strata and lands on my shoulder everytime babe, always my shirts are soaked by your delicious tears.
please visit and bring me a gift basket, i am on medihotel. i want to give you a gift as well, i will take the train home tomorrow to get it, it’s the book i learned to draw in, it’s 200 pages thick and i have never been able to part with it, but i want you to have and be buried with it if you would like.
it is true i feel hurt in here often, but everytime you write me i swell in size and strength babe. they can’t get me in the braun of your hold.
i want you to know this:
i am so blessed to know you. sitting here in the recycled air of the ward i wish we could cuddle and watch something idiotic but well coloured and bright, shimmerful and feel as the pictures look together, holding one and other. we must meet before your last hurrah, goddammit, i won’t die/let you die not having met you for real! i can’t tell you what you have done for my life, the blog, the physical work, the wanting to live, the believing in this life in this new way - it is all thanks to you. when i found you i followed the trail of everyone you knew on the internet and i stared into the strange swirling contrasts of their facebook photos, they all lookt so much like us, flushed cheeks, pale, strangely contoured, gremlin hands. crouched, crying and tattooing myself over you, asking what a unified community against CF was, i changed. after publishing my journal i felt like i had grown and swelt enough to know what was good, like i was brave enough to stop sleeping into death with good fashion and to start hurting and running and trying sans grace or fashion or fear or self loathing and just live. you made me wanna be a part of something, in my separate way that i do, you made me want to talk about it. explain the guilt and the solitude and separation. explain what it means to be made to feel a burden in this society, to be told what you need by officials at every turn when it came to YOUR OWN BODY, to be called a “self-aggrandizing asshole” by affronted friends if you took the time to shout how amazing you knew you were as a whirling fuck you too all the pain you live behind beige climbing curtains that don’t have clasps but reach deep to blot out the skyline that every other able-lunged breather takes for granted. when you sent me your heart coded in plain arial font, formatted in the structure of a facebook personal message, just to say that the words i wrote gave you something, pullt you up from the edge of your death bed a bit more, made you feel like this pain had a voice - i saw in you the power of a still living human voice and touched my throat to recognize my own. since you, art isn’t just a way to survive for me, i am obsessed with what i can generate with it, what i can birth with my voice. in my voice is yours forever fluttering with me when we sing. and when i dance on stage, feeling the privilege of breathing deeper than many with this illness, i think of you and i spit it ridiculously sick for both of us.
every breath i draw is because of “since you”. i love you. signed grant jonathon gronewold recently aged to 24.
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this is what she looks like and i love her:
* if you want to send me letters of support and love for maddy then write me at sunsetgradient@gmail.com and i will pass them on.
