I hope you get to see this, and I hope you can tell me your name. I'm Eli. I'm 21, and my older brother, Noah, passed away on July 19th of brain cancer. He was diagnosed in winter 2014 at the age of 21, and was told he had 6 months to a year. He fought hard for two and a half years before going. Noah was a very unique individual. From the time of his diagnoses, to the time of his passing, he had this untouchable, can do attitude. He joked, never complained, and supported so many people that should have been supporting him. His tumor mainly affected his motor skills, so he was Noah till the end. Although he was never bitter, and the few times we did talk deeply about it, he simply expressed that he was scared and confused, I think he struggled with a lot of the same things you're feeling. As his younger brother i often projected his condition onto myself. I would not only ask "what if that was me" but truly examine what he must be feeling, and how everything around him effects him. At the beginning, there was so much support. Friends and family flocked to his side, and so much love was shared. As time went on, the support dwindled. How could his friends not be there for him more? how could they not see he needs support, and love, that he needs to live? I even found myself feeling weird and distant. like i didnt know what to say or do. I felt scared and odd when i was around him. he was my big brother. He was supposed to kick my ass, and drink beers with me, and jam on the guitar and call me drunk with a crazy story. But then i'd feel so selfish, because no matter what i was feeling, he was dying! He had to wake up everyday with the thought that he might not make it, and I'm caught up in myself. I think it's difficult when you see someone you love lose parts of themselves that like you said, define him. It makes it difficult to spend time with them, because it's not the same relationship. But what about them? Noah was still Noah until the day he died, and at a certain point i realized this, and realized all i can do is love him and spend time with him. He gave so much love, and i needed to give him love back. I know he struggled with the fact of his friends being there less and less. I know he struggled as people saw him differently. I wish i could have been that person for him to be himself around a little more than I was. seeing what you've written is kind of a confirmation of the things i knew he was feeling.
Noah had a way about him where he joked, and laughed, and made other people feel good, and would reference his condition is such a light way. As the disease started to affect his body more and more, he would simply drop light remarks here and there. After enduring a few seizures, he began to lose motor skills on the left side of his body. He'd say **** like "uhhh i cant even play guitar any more.. gettin old!" when that had been something he loved so much. Toward the end, he started seizing more severely, and more frequently. I think sometime this winter, he knew his fight was coming to an end. I have tried to imagine that, and put myself in his shoes, but i can't. Although ive always thought i've been able to "get" what he was going through, the maturity that i saw in him as he faced his final months was something so admirable, and i dont understand it. He continued to carry himself with grace and eventually he basically lost mobility. As it became more apparent that his time was coming, so many people came out of the wood works. His friends that had been sparse in the past months began flooding his room daily, and all the love he had shared in his life was coming back to him. He passed peacefully at home on a night where we had planned a jam session outside of his window. Knowing how pissed Noah would have been if we'd have cancelled it, we continued with the party to celebrate his life. So many people came with love, and stories. So many musicians came, and so many melodies were played for noah that night. He was gone, but he was there. He was with us more so in a way that he hadnt been in months. We weren't with his body, but we were with his spirit. As the days passed, and services were held, it became evident of how far his reach had spread. People from all different parts of noahs life came to say goodbye to an old friend. He touched so many people in unique ways, and left a piece of him everywhere he went. While the sickness wrecked his body, his abilities, and scared away friends, it never killed his spirit. I miss and feel noah more than i thought possible when he was dying. It sounds so cliche, but he really does live on in me. I dream about him, and i feel him, and I ask myself what he would have though or done everyday. There were times while he was sick where i felt myself growing apart from the noah i knew. Once he passed, I felt and remembered all of his energy, and music, and lovable stupidity, and physical aura. Noah touched a lot of people, and although he was changed, and is now gone, those moments are not.
I'm sorry that this is what you've been dealt. I wish I was the person that you could be yourself around, and relate to, but I don't get it. I can't get it. You've touched more people than you know, and those friends that you're mad at love you so much. You are you, and no disease can change that, man. People arent going to remember you for your fight, or your disease. Even your doctors will remember you for being you more so than you think. When/if you pass, everything you've done with others is going to hit them in the face like a brick. People feel again the emotions that they felt with you on those days, whether it be the time you mastered a new kick, or a song played together, those memories happened, and people feel that all over again once you're gone, and they'll feel it every time they think of you, or hear your name. I don't know if you'll be able to do something to feel alive again, but you were alive, so you are alive. You've been there and you know those feelings. You've felt loss and gain, pain and love. Just because you're not in that moment, does not mean you do not have that. It's a part of you.
I admire your strength, and wish you the best on your journey. As far as activities that my brother enjoyed as his body grew weaker, he seemed to get joy from the little things. My dad got a puppy near the end, and Noah loved him. It was the little things that seemed to make him feel happy. Having a "normal" conversation always seemed to relax him. A few of his friends have babies (about one years old) and whenever he saw them, he couldnt get this **** eating grin off of his face (well..half a **** eating grin, as the left side didnt work so well lol). He liked to take a hot bath, put on some medatative music, and just relax for a while. I think he kinda went to other places in his head. He liked being around people, and having people play music around him. He also liked to smoke weed, and would get high with us till the end haha. I'm a very physically oriented person, so I imagine myself despairing if i ever lost my body, but i think the trick is to find joy in other people, and the world happening around you. I saw that in Noah a lot, and if i'm ever in those shoes, i think that'll help me.
Good luck stranger. May your high kicking spirit remain intact