#life #wisdom #truth #remember #weird #limited #edition ##people #see
Do you know your partners/daughters/sons/grandmothers/sisters/brothers/ mothers/fathers end of life wishes? Or are you just going to pull the plug because you cant handle it?? tell me. are we really that heartless these days? are we?
C.M.O In Real Life (I was always sick, I got new lungs, immuno suppression is way worse than CF in a completely different way)
All of my dying words were altered and lost. So It’s a new day!! :) just breathe! Pay attention to the good. We may not be the United States by law. But come on. We are all human.
We can fix this together, all the ideas are out there already rosa parks, MLK, slave labor still happens for this shit we buy in who knows where china? hormones in our food, we are trying to be non perishable but no one lives forever.
My risk of cancer, right now, without the ability to afford my check-ups on all of these immune suppressants. Is totally insane and I could die without the proper care. Tomorrow. And I just wanted to go back to school. But my health cannot sustain it right now.
I lost all of my dreams to this gene deformity. DF508. Cystic Fibrosis. I gave them all up for hopes of having a job with insurance someday. So I could take care of my donors lungs. Who’s family I would love to meet someday. :) <3
Chariot. Gavin Degraw. :)
I love literacy. Words and I like writing but never got a chance. I didn’t have enough time. Although I was never in a hurry. I like thinking for myself. I like doing things myself. I was never allowed. I had the rarest childhood disease of my time. The cystic fibrosis foundation was developing medications as fast as they could for these people with the gene DF508. Although it was said there were other gene deformities, it seemed a lot of the jealous folks wanted CF because we were given everything. And we were always getting love or what we wanted as in tangible objects and trips because my parents were told we would die in our teens. Which is why my bother never graduated high school. I loved school more than anything. It was a privilege. I wore my IV to school. I even took it on the ski bus. When I was allowed. I had a needle in my port a cath continuously since I was 3 years old. I was allergic to almost every synthetic materially. Like picc lines gave me huge rash. When latex was in most medical products of the time.
I regret my tattoos. And got them to take care of pain not related to my cystic fibrosis. The same reason why I got my earrings. I had self inflicted pain that wasn’t due to my cystic fibrosis and I regret getting them. But I was on many anti inflammatories as a child, including prednisone the anti inflammatory kind. And ibuprofen at such high doses for my extremity horrendous menstrual cycles and my sinus headaches.
My teeth were always crooked due to holding nebulizers in my teeth while I played a video games on my Nintendo system all day before and after school. Or I did step aerobics with my mom at 5 am before she went to work. My brother tried to talk about our family but was always silenced because of fear of our dad.
My dad acted homophobic and racist, and republican, and gun toting stereotypical “American” even though I don’t agree with stereotypes whatsoever. Every type of person that ever took care of me, nurses, doctors, etc always were the greatest people in the whole world. And in my eyes, they were the real heroes of the world. They were IT.
My brother used his words a lot to protect himself from judgement. He used my dad’s hurtful words in front of his family. He had a huge heart. I was too sick to speak for him, I was too sick my entire life. Since October 15th 1988. My storied were lost, they were all in electronic form. I finally have a chance to speak, and I cannot find anyone I want to be with right now, I do not have the assets or the energy. And yes, my vagina is bleeding. PMS is PMS, Cystic Fibrosis is on top of NORMAL BODILY FUNCTIONS. So suck it up. Be a good human Yes?
25 YEAR OLD. CYSTIC FIBROSIS. DF508. LUNG TRANSPLANT SEPTEMBER 16, 2010. Got the call 11/15/2010. My dad was so stressed he could barely drive and my mom was just yelling fuck, fuck, fuck on the phone to everyone. People handle stress differently. Me: not happy about all the pot (or anything)(except beef jerky, and I’m not even suppose to eat it immune suppressed.) smoking and lung problems. Not cute world. NOT CUTE.
Today was my first day of college. It’s been a dream of mine since I was young to someday attend, but my health had never allowed. You could say I was like a kid in a candy shop, suddenly realizing that there are just so many things, the excitement is almost too much to handle, yet it’s overwhelming to think of how I got there. How after all these years I’m standing on a campus waiting to enter my first class. At the same time I was taking in every little detail that I could fit in my brain that wasn’t already adjusting to the depth of the situation. I’m incredibly grateful for the opportunity to return to college, without my donor this goal could have never been a reality, and today was just the beginning.
It’s hard to think about someone losing their life and selflessly giving their organs so that others can live. It’s the ultimate gift, whether chosen by the donor or their family, it’s the ultimate selfless act. Being on the receiving end I think of my donor as more than a hero, not only because they save my life, but because they have me a second chance at life that I never had. They gave me access to things that I never dreamt of having and abilities I always longed for. A life that I always wondered how it would feel like to live. One free of pain, suffering, coughing, and endless surgeries, appointments, and medications.
I never knew any different, but I still wondered in curiosity, while always being completely thankful for my life and being alive. Before my transplant I was on full time oxygen for months, barely able to walk to the bathroom, and on IV antibiotics for months at a time. I’ve had countless surgeries, spent hours a day on treatments and therapy, and rarely had the energy to do anything else.
When I got the call they had lungs I had no idea what to think, besides the initial shock I don’t think I believed this to be “the one.” I was plugging in my feeding tube like any other night, turning on my bipap to help me breathe when my dad walked in. It’s hard to think about a family losing their loved one at the same time, and that’s the only reason the call came. I know the feeling far too well, after losing my 21 year old brother to the same disease. Life is cruel. Beautiful but heart achingly awful sometimes. It’s then impossible to believe that anything happens for a reason. I believe we just have to have faith if we can.
When I woke up from surgery it hadn’t been the most ideal recovery. But as soon as they let me go I took off running (literally) with my new and very functional lungs. I ran a 4 mile run only months after leaving the hospital, along with countless other races, bike rides, one being 50 miles in length, and hikes. I was able to travel, not long after, I flew to friends graduations, was a part of my best fiends wedding and had many amazing experiences traveling with this new gift.
Later I completed a half marathon, volunteered for a computer literacy organization, and traveled to Hawaii and Alaska to mark off some the the places that I had always dreamed of going. The experiences I have been grateful enough to live since receiving my new lungs have been more than I have would have ever imagined. It’s beyond belief. The fact that I started college today, makes me feel no more and no less than normal, and it’s the most amazing thing.
I have tried for hours, days, and months to put into words how incredibly grateful I am for this gift of life, this second chance, that you so graciously gave me. Although there are no words that could possibly put my feelings on paper, I want you to know that you, friends, family, and all the loved ones of my donor have a permanent spot in my heart and I am forever indebted to your selfless … And I breathe every breathe in honor of my donor.
Lies I’ve Told My 3 Year Old Recently
Trees talk to each other at night.
All fish are named either Lorna or Jack.
Before your eyeballs fall out from watching too much TV, they get very loose.
Tiny bears live in drain pipes.
If you are very very quiet you can hear the clouds rub against the sky.
The moon and the sun had a fight a long time ago.
Everyone knows at least one secret language.
When nobody is looking, I can fly.
We are all held together by invisible threads.
Books get lonely too.
Sadness can be eaten.
I will always be there.