POZ Community Forums
Main Forums => Living With HIV => Topic started by: penguin on September 17, 2008, 08:32:27 pm
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So, indeed.
Multiple friends/random almost strangers in process of being screened for kidney match. 19 down, 17 more to go.
My brother not a match. My mother refuses to be screened. Something about me being dead to her already? I suspect her organs are pretty much pickled anyway.
I doing this for my brother mainly, his grieving process & needing to know we did all we could. Even if we do find a match, only been able to find one transplant team who would be willing (theoretically) to attempt. Something about ethics & guidelines & other legal stuff. When pressed (repeatedly) they reckon v small chance of me even making it through surgery. So, a point they have it seems.
I don't know what I will do, unlikely event they find me one. I guess it comes down to… how lucky do you feel? nothing much left to lose at this point, other than perhaps control over the where. Like, hospital smell & machines beeping & unaware of the moment of my leaving. Or, home, my music, high thread count sheets, & someone I love able to touch n speak to me.
Strange place this, the sense of time running out and having still so many things left to say. And yet nothing really, or maybe just not words enough in my possession to say them. The knowing that all of it, all of it will continue even when you do not. The letting go of all of the I wish 's and I should 's and just once more I would like 's, like cutting balloon strings, one by one by one.
I wrote a letter, kinda simultaneous hello and goodbye. To a small person I gave away many years ago, in a different, mixed up time, coerced & confused. So that if one day she comes looking (they nearly always do?) there will be something more than empty space to find.
I told her a bit about me, who I was, what I did. About walking away from all of the weight of the past, and the people I met and the things that I saw. About my music, my books, the adventures I went on. How white hot the sand was at Kilifi; the electric charge energy of thousands, amandla! , clenched fists raised; & how I'll take Ravenscourt park over Hyde or Holland any day.
About how I never did anything very grand or important, but I (hope) I did some things right, (hope) I mattered to some people.
I told her about the beautiful soul that is my brother, & how he will be there if needed, to put together some of the pieces & help make sense of it all. About all the inadequacies of sorry , and how (just once) I would have liked to know the feeling of saying her name out loud, and whether her eyes smile when she laughs.
mostly though, I just said I wish you all the love that there is to be found in this world.
(i hope) that will be enough.
Harsh place, beautiful place, hello-goodbye kinda place, this world. And still always, with all of me, I can say I am glad for having been in it.
kate
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Kate, A very touching post. You will be in my thoughts and prayers.
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Hi Kate~
I am in tears after reading your post. I had no idea you were waiting for a kidney. Here I am, worried about being able to stand up, and you're waiting for a damn kidney. It makes me angry that you have to go through this. :( Please know that I am thinking of you tonight.
Much Love,
Cindy
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Kate,
I'm new here, so I don't know you, but that doesn't matter.
I will be thinking of you tonight also. All the best......
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I wish I could give you one of mine, if it was possible, I would do it in a heartbeat for you. :-*
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Dear Kate,
You're very much in my thoughts and prayers this evening. And yes, you do matter, very much.
with love,
Alan :'(
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Sweet Kate, I'm not sure what to say or even if anything I said would come close to adequate. We love you very much, the Wee One and I, and pray for you and Matthew every night. I wish you so much peace and love and happiness. I'm sure that where ever you are or where ever you go, there will always be plenty of Jell-O.
Mum
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Wow Kate. Your post touched me deeply. I hate that you're in the situation you're in. If I could, I would make everything alright for you. You do important things all the time, like when there's a question about a symptom or med, you're here with spot-on answers. And the pm's you've sent mean so much to me. You're truly a being of light in my world and I love you, really.
Said with a tear,
Betty
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Kate..
My thoughts are with you. Please accept this big cyberhug..
Shaun
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Kate,
My thoughts are with you....sending you good vibes. -Mike
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My thoughts are with you Kate. Thank you for sharing your thoughts so honestly.
I hope for the best for you.
Auspoz
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What a predicament and what a shame your brother wasn't a match. I'll be hoping a suitable donor organ emerges in time..
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Kate, I will have you in my thoughts, I wish you strength,
I wanna ask if there's something can do but I realise it's like
an expression of my feeling of being unable to help with what you go through. :'(
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sorry is too small and so is I wish you all the love that there is to be found in this world
perhaps that line in a song I would rather bet my life against the rising of the sun (again) is the right size.
can a clanger whistle be thoughtful and angry at the same time?
XXXXX
- matt
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I just said I wish you all the love that there is to be found in this world.
I know an old man with a wiener dog wrapped in paw-printed flannel who knows love through your friendship.
Please put my hand on sweet Matthews head and give him a rub.
Hal
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kate- I am new here too and this is the first post I can recall reading of yours but it touched me deeply. I too am thinking of you and hope that you stay well.
J
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(((((Kate)))))
I'm so glad you've had the opportunity to write that letter to the small person. I'm sure she'll cherish it.
And yes, you have mattered to people and you continue to do so. You've touched the lives of and helped so many, perhaps more than you'll ever know.
Sending you much love and strength - for Matthew too.
Hugs,
Ann
xxx
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Kate, although I don't know you, I am sending you well wishes, regardless how minuscule they may sound, compared to your struggles. I am so sorry, I hope and will say a prayer that you find yourself in a better circumstance soon. Big HUGS.... D
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Kate,
This is one of those times that I feeling foolish for even attempting to respond to a post as it seems nothing I know or want to say is adequate.
But I can't not acknowledge your post.
You have Jeromy and my love and thoughts.
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{{{Kate}}},
I feel lost trying to find something proper to say, except perhaps that I am in awe and deeply touched by your inner strength and powerful words.
I am humble and so grateful to have known you a little.
Hope. I am hoping for the best possible outcome.
Sending you energy and courage for you to carry on.
Alain.
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Kate
You continue to inspire us and ... I hope you can continue to do that.
Joel
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You did do something "grand and important". You wrote that letter.
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Dearest Kate,
I read this last night when you first put it up, but couldn't think what to say. I guess I'm just really over it all that you are dealing with so much.
I googled "Ravenscourt Park" and it looks divine, so I'll just say I'm thinking of you in that place.
Love,
David
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Katrina-
Your effortless grace in this situation shines as an example to which we can only aspire. I sit here humbled and deeply moved.
Please accept the love we offer as dim recompense for business left undone.
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Kate -- I don't think I've ever been so moved by a post in these forums. Your honesty, your fears, and your love rang loudly. I hope that you find and fight for a transplant.
xoxo
Peter
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Beatifully written Kate.
I dont know what to say except hang in there.
Praying for you dear,
Ronley
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Kate
A stranger, our few exchanges motivated by your compassion, I wish there were some way to convey strength.
Hold your brother tight.
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Just wanted to say I'm thinking of you still Kate, and sending good thoughts your way.
Auspoz
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Harsh place, beautiful place, hello-goodbye kinda place, this world. And still always, with all of me, I can say I am glad for having been in it.
kate
[/quote]
Thinking of you and hoping all is well.
ronnie
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I don't know you, but I want to tell you how touched I was by your post. You'll be in my thoughts and prayers and I wish you peace.
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Kate,
You're an amazing woman. What you've written is both inspiring and touching. Here's thinking of better times for you. Take care.
David
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Kate, please hold on to that peace, that serenity within yourself....
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Please, Ms. Kate... I don't even know you but you're an inspiration to even me... don't give up hope...
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thank you is another too-small word, for all of your beautiful replies and messages and calls. internet, I always used to think it was just one dimensional flat screen-ness. sometimes, sometimes I am glad to be proved wrong.
takes special people, proper star people, to not flinch or recoil from all the sadness and discomfort and fear this stuff brings. I have found people like that through these forums, and they have my love always.
for those who asked, screening results should be in over the next 3-4 weeks. we shall see.
(to my no 1 best clanger island boy, I say… purple blossom avenues, n. cornwall tents, race you to the top at hillend… those ones, I keep safe. those ones, I am not letting go)
thank you all, again - kate x
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Dear Kate,
I have read your post with so many feelings a couple days ago but I didnt yet know what to write. So, just the truth: I never miss any of your posts. And although we rarely communicate, you've made a deep impression on me since my first day on poz.com and my first months as a poz. I regret so much that I didnt get to meet you in person. I dont know what else to say except this subjective little speech. And also that I am hoping, praying, with all my heart for you.
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Hi Kate,
Thank you for keeping us up to date. I know you have your special pals here, but truth be told lots of us care for you and are hoping for the best. One never really knows what to say in these situations, but I suppose something always trumps nothing.
I hope for the best and that you find some peace.
Take care
c
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Kate,
I've been trying to think of something to write here but I just can't find the words. People on here have done a much better job of that than I could do. I just wanted to let you know that you are a very special person and you are in my thoughts.
Chris xx
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Hi Kate
I too am lost for words, remember the painting I did for you awhile back, well I now have it on display in my art room, so please know that you are in my thoughts everyday.
Hugs
Jan :-* :'(
(http://DSC02382)
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Hi penguin.....
this is the donkey speaking. If I knew 'penguinese' I'd flap my waddles and make you smile. I'm hoping for the best.
robert
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sorry to bring this back up, but are you doing better now? any news or good outlooks? i'm really hoping and praying for you ms. kate...