today i had an epiphany. one that i feel has been building for some time but suddenly burst, causing an array of emotions similar to that of a child blowing dish soap through a wand. amazement, curiosity, wonder, and a strange sense of the unknown. ive always been pretty gung ho about transplant i want more life, a better life, i want one that feels more normal, although they say its trading one disease for another it seemed that transplant was the better of two evils,
please know i have every desire to live. i have lists and lists of things i want to do, i want to see my nice and nephew grow into the smartt amazing women and men i know theyll become. i want a family, white picket fence and all, something i never even considered before but now is a goal of mine, a future endevor that i hope i will one day accomplish.
what stands in my way is a question.
"do i feel my transplant will be successful and do i believe and that in my current situation i will thrive with my new life?"
contradictrart to my last post i do feel like a leech. like some scum of the earth bug that hangs out and never leaves. my sister will never turn me out and her husband is growing more and more tired of me mooching off of them day in and day out but theres nothing i can do. i cannot work. i cannot go to school. i feel worthless as a human being and i feel like a waste of space. tonight we got into a petty argument because i wanted a heater for my fish and my dog to stay warm, i cant pay for the bill for a space heater which i dont know how much it costs but i dont imagine its too much and i was told as soon as my friend leaves my space heater for my living room would be taken away.
part of me is my pets no matter how stupid that sounds, i want them safe and warm and im heart broken that i cannot contribute to keep them that way.
today ive been thinking that maybe transplant is not for me. perhaps the strain on not just me popping xanax like candy because my anxiety is heart pounding, breath taking, sick to my stomach intense but because im causing strain on my family. between us and between them. i refuse to be the reason my sisters marriage falls apart. i refuse to be the reason my beautiful niece and adorable nephew grow up with fights between their parents over something such as having to take care of a worthless nonworking noncontributing leech.
yes, i want to live, but not under these circumstances. not where i live in a home that im scared to leave my room. not in a home where im cold day in and day out because i cant afford to pay for upstairs hear or insulation. i want a full life and i feel like ive lived one. my depression is getting worse and my anxiety is through the roof. ive skipped meds and treatments because i just dont care anymore. this is the dark side. this is the side of transplant people dont talk about. the doubt and the worry and the feeling like absolute garbage.
the only people who understand the decision to decline transplant are the ones in situations like this one. situations where fighting is is just too much please know im okay with this and im fully at peace with my decision. ive lived a life full of adventure, i still have plenty of time left and i intend to use it to continue my work with the #StandWithAleppo movement and my fundraising work with the cystic fibrosis foundation.
thank you for all the love and support over the years, i feel this is the best decision for me and for my family, we will all be at peace. please feel free to leave me comments or thoughts but i cant say ill change my mind as ive been thinking on this for some time now. i hope you all respect my wishes.
love to you all.
2 comments:
Hi Rachel, its Katrine we've actually talked a few times. This is the first time I've actually read you blog. This post you wrote I can identify with almost of all it. I read it and it's exactly how I feel at times. I've been in those dark places and I am kind of in one now because I want the house with the picket fence as you put in your blog. In a world where people are getting promotions, are getting married and making babies sometimes it feels like all we are is in the standstill of life. This constant loop of getting sick, getting better only to get sick and do it over and over again. I understand the feeling of being useless, I don't work either; my boyfriend supports me financially and I am scared of the day he decides he has had enough and leaves. Just remember that just because you think or feel useless doesn't mean you are. (Just something that I've myself learned along the way) You haves strengths and gifts that no ones else has. I often see pictures of you with your nephew and niece; you seem like a very amazing aunt to me. xoxo Fellow Salty Girl
Hi Rachel it's me Joanna. What the both of you explained is my life plus more! I know transplant is not for me unless some where a miracle occurs. But as of right now I'm with you I feel like a leech like I'm not to anyone's standards cause I can't go out as much I have horrible anxiety and depression too! Even if my life was at the transplant standards(breathing is others is not) I'm not sure I would get one. My mind may change later on but now it's off the tables and people tell me I'm nuts. But I can't stand the fact of always feeling alone. And that is what makes me sad. Well I'm here for you girly and honestly I've been slacking on treatments also :( you seem to be a pretty amazing woman if you ask me and I've only spoke with you briefly. Stay strong that's about all we can do! <3
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