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beccaman · 6 years ago

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bi and pan people!!!!! are neat!!!!!!!!

reblogging this is not mandatory but it is highly recommended!

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beccaman · 6 years ago

Text

bi and pan people!!!!! are neat!!!!!!!!

reblogging this is not mandatory but it is highly recommended!

45K notes · View notes

beccaman · 6 years ago

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Butch

It’s been about two years since I got diagnosed with Cystic Fibrosis (CF). During this time, I’ve learned things I’ve never even heard of, felt a whole range of emotions I didn’t quite understand, and experienced grief that I’m not even sure if it was my place to feel. When the death of someone with CF comes to my attention, I suddenly feel an immense loss I don’t feel I have a right to. These people, whom I’ve never spoken to or seen in real life, never known their lives more than through a screen.

When I was first diagnosed, I didn’t understand the words I was hearing. At sixteen, I had never heard of CF before and had no clue what it was. All I knew really was that my lungs were pretty shitty. After being diagnosed, I was immediately surrounded by new treatments, new daily lifestyle changes, new doctors, practically a whole new life. I couldn’t grasp what was happening around me, it was like I was watching from another person’s body. My parents were devastated with the news, and my mom was especially convinced I was going to die the next day. So on top of all the new things, I was seemingly wrapped back up in the past as well, coddled by my family for a while and looked at with some pity. And I pitied myself later on as well. But at first, even though I was the sick one, I felt nothing really. I suddenly had these new things to do everyday, but it was like nothing had changed. I realized later it was because I hadn’t properly processed the whole diagnosis at the time.

So, after a little while of adjusting to my new life, life mostly went back to normal. I started following and immersing myself into the CF lifestyle. I researched and watched and followed as many people with CF as I could. People I felt connected with, even though I had no clue who they were. One of the first was the Salty Cysters and Gunnar Esiason. That was a good place to start. Positive reinforcement about a disease we were all living with. A positive outlook on life, despite the odds facing us.

Still, because of my abnormality of the later diagnosis, I couldn’t relate to everything they said. I listened to their podcast, Breath In, and I couldn’t always relate. I felt outcasted a little, like I didn’t belong because I wasn’t suffering as much as others. But of course I do belong. I still suffered. I still fight an illness with no cure. I’m still hurting.

I found some solace in the girls, especially. I felt comfort in their friendship with each other and the struggles they faced and accomplishments they made.They were so human and real, it didn’t feel like I was looking at their lives through a screen. I felt like I knew them.

Then, December 2018 rolled around. Lea had been pretty sick and I think most of the community underestimated how sick. So when I got the announcement she passed away, I was suddenly overcome with a sense of crushing grief. I didn’t understand why. I never spoke with her, even on the Internet. But as time passed, I also realized it was because in a sense, like the rest of the CF community, I had felt a bond with her that only those who are chronically ill share. A sense of comfort in each others presence, even if we never communicate. A sense of understanding no one else knows except us. I grieved for Lea and her family and friends and honored her. I attended her funeral online. I cried at her sister’s speech. I grieved the loss of a sister whom I barely knew.

It happened again pretty recently. A year ago, I believe it was April 30th, my mom came home from her shift at the hospital as an emergency clerk in tears. My mom has to deal with some pretty shitty and crazy stuff sometimes, so whilst I was surprised to see her in tears, I also wasn’t really. Something sad had probably happened at work or to my grandpapa, who was sick with cancer at the time, and I braced myself to hear it.

It turned out on April 30th, 2018, a young man who was nineteen years old had passed away from CF. My mother pleaded with me to take care of myself so I wouldn’t end up the same way, and I reassured her. I was seventeen at the time, and my diagnosis was barely a year old. Of course she was upset. She just didn’t want me to end up dead at nineteen, like the young man. She wanted the best for me, and she told me little else about the man; He hadn’t been taking care of himself properly, his mother and family were there crying and at a complete loss and she had had to comfort them, etc. I thought about if for a little while, feeling a little grief for this man, but because I had never spoken to or seen him, I couldn’t grieve like I had later with Lea.

However, this year, yesterday, April 30th, 2019, my mother called me into her room. She told me it was the one year anniversary of the man’s death, and that she was talking with one of my friend’s mother, who also knew the man. She showed me the man’s page, and I was suddenly filled with shock and pain.

I had known the man after all. My mother had never shared his name, so of course I never looked him up. Butch. I knew Butch. I had met him once or twice a couple of years ago, way before my diagnosis. My best friend had been dating Butch’s older brother. She and I went everywhere together, so while she was on a date with him at the park, I was hanging out actually on the park when I met him. I never knew he had CF. Again, at the age of thirteen to fourteen, I had no idea what CF was. If I was thirteen or fourteen, Butch at the time was fifteen or sixteen. At that time in my life, I was going through my emo phase. Butch was everything in appearance I wanted. He had long hair and piercings and he skateboarded. I thought he was really cool. Having said that, I also knew lots of shitty people who looked and acted like him, so I was wary when he approached me.

I was pleasantly surprised though when I found out he was actually really nice. He was kind to me, and sat with me while my friend and his brother were on their date. I enjoyed his company and found his antics amusing. When my friend and I left later that day, I asked her when she and her boyfriend were going out next, and I would go again if he brought his younger brother.

To find out it was Butch who passed away was a majorly shocking experience. I feel loss in my bones and heart I haven’t felt, ever. Of course I grieved for Lea. Of course I grieved for Butch when I didn’t know it was him, just a young man with CF who passed away. But finding out it was actually someone I knew, someone I spoke to, someone I hung out with, someone I liked, it’s new. It’s new, because I didn’t know Lea. I didn’t know the ‘mysterious; CF man. But I knew Butch. Suddenly his death is raw, even though it’s one year later.

I never seen him again after the park. But I remembered his existence. I remembered his face and his hair, I remembered his kindness, and I remember the comfort I felt with him. Like all people with chronic illness, we are connected and comforted by one another. I didn’t know it at the time, but maybe that’s why we were connected. We were both sick, I just didn’t know it. So this goes out to Lea, to Butch. You both changed the world. Lea maybe more internationally, but Butch changed the lives of those around him. If you met him, you’d always remember him. It’s been four or five years since I met him. And I still remembered him. I still saw his name and recoiled in surprise. I still see his face.

So, Butch, I know I’m late, but I’ll miss you always. I wish I knew we were connected in more than one way. I wish we got to know each other better. I hope you’re at peace, and I hope you know the lives you’ve changed. You brought so much joy to this life, and I cannot even imagine what those who were close to you feel. Breathe easy, Butch.

#CF #Cystic Fibrosis #Chronic Illness #Blog

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beccaman · 7 years ago

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me: hmm what happens if i forcibly bend this thing

thing: *breaks*

me: