Wednesday, May 18, 2011

pain and purpose

I dont know, I have been wording this entry for a while, turning it over in my head and rewording. Coming up with the right words and forgetting them soon after, coming up with hundreds more words until it turns into a a jumble of letters that make no sense.

When I  started blogging, my whole purpose was in hopes of find people with similer stuff happening to them. I knew it would be a long shot as things seem to never go the simple way with me. Along the way, I have met many many people. Some I have related to so much it has been like reading my words, some have had smilier things in their life, some have annoyed me from the start, some I have liked their attitudes and wordings of things, but soon grown aggravated when they moan over about the same things or kick up a fuss at small procedures that are meant to help. Many I worry about. What the future holds for them and how will they deal with it. I mean, if they cant undergo a simple outpatients procedure how on earth will they deal with a transplant when the need arises. The funny thing, most of these people are complete strangers to me and always will be. But some of them, I will never forget. Those are the ones I admire most and the ones seem to be the ones who keep getting taken away.

Maybe I am naive, maybe its due to my transplant experience. I spent a long time being bitter about transplant. Mine was a little different to most, and while others grew sick beforehand and watched their lives slip away despite their best efforts to keep in control of it. Then they went through transplant and suddenly everything improve. With mine, the way my mind tried to rationale, was that I was perfectly fit and healthy.I was 16, never take any medications accept the very occasional antibiotic, hadnt see a doctor in about 4 years. The next thing I knew, I got out of hospital after transplant and suddenly, I was faced with so much change. Doctors every week, stacks of pills, endless lists of things to adjust to it. It was a big change and I hated it every step of the way asI fought many daemons off my back. I lost my friends,my independence, my energy, my personality everything, all in a few short weeks.

I didnt like the person I had become and I didnt want to know anymore. I wanted to burry everything under the carpet and pretend it hadnt happened, go back to my old life and forget everything.

When I started getting sick with my breathing, I began reading about,doing research, finding other people wanting to know as much as I could.

I never really considered the consequences of this. But as time goes on, I see these people conquering great things, getting better and my heart beats with joy seeing them do the things they alway wanted. But, then something clicks and they begin to go downhill. Before I know it, sad news is passed on that they are no longer restricted by anything, that they have left this world, this pain and gone on to somewhere else.

Everything begins to hurt, to feel heavy. I may not have been close to them, but it still hurts each time some one goes.

I mentioned in my last blog about Bree whose blog I read having gone from us.
This sadends me, but more so out of selfish act.
I came across Breesj ournal a long time ago, I think through a transplant forum. I immediately fell in love with her writing, her style and attitude never ceased to make me smile and her happiness came across in every post. I knew that she had hada lung transplant, but could not remember the reason for this.

After she hadnt posted for a couple of weeks, which was odd, I went to check her blog and something caught my eye. In her about me section, she mentioned having had a lung transplant due to Bronchiectasis. My heart skipped a beat and my breathe caught in my throat. This is what doctors had been queering with me, this is what I had been searching for answers to and the best answers I could ever get, were right under my nose.

I knew Bree wasnt well and so I hoped for a speedy recovery for her, checking in twice a day just incase she had posted. I had thousands of questions going through my head that I wanted to ask once she was better. I hoped she wouldnt mind answering me, but from what she wrote, I didnt think she would.    

But now, I cant ask those questions. Her time is up and not because of the lungs. Sadly, the lungs she got worked brilliantly, but some mystery disease was causing her body to attack itself, especially the brain.

Its sad losing people. I know how fragile life is, I have had a lot of very near misses. The experimental surgeries promise nothing. But I know I must continue to move forward no matter how slow the place or how steep the incline. But, right now I guess, it just leaves me questioning the balance of finding people to relate to against the risk of losing them. Bree, I hope you are having fun and kicking some butt wherever you are now.

1 comment:

  1. Kim,
    Sorry to hear this. I think most of us in this network can relate to your post. I have lost a number of friends also.
    Take care of yourself and try to get some rest.