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MRN: 020342855

My Last Birthday Before I Die

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Hello...I guess I'll start with my name. My name is Medical Record Number 020342855. That's the number that the hospital assigns to you as your ID. People refer to me more like this than my actual name and it is starting to feel like my real name now. I am male and 19, well actually 20 because it is my birthday, and I have 6 months to live. This is really weird talking about like it is nothing, but yeah I'm going to die soon and this is my last birthday. Knowing that I just have been thinking more and more about what death will be like and what should I do before then. I have already come close to death many times so I have accepted my death and I'm okay with it. I guess I am just writing this for myself and to just to say what I feel out loud even if no one is listening.

I have a rare blood disease called antiphospholipid antibody syndrome. Basically, my body clots way too much and I am susceptible to forming serious blood clots. Lucky me, I have the rarest and the most dangerous type. It has gotten to the point of catastrophic antiphospholipid syndrome (CAPS). I have not responded to any treatments known and yes I have tried them all...even chemotherapy. I've clotted over everything and nothing has significantly helped. This is why my case is so fascinating to doctors and this is how I will be remembered. Not me really...it will be the rare case that couldn't be solved. All they will see is MRN: 020343855 and that case to learn from. Don't get me wrong, I want to contribute to medicine as much as possible, but sometimes I feel like that I am just an experiment and something to study. We have even joked about it saying that I am an experiment. But I just want to be me, not 020342855. But I'm not even sure who I want to be or who I am anymore because of this disease. I'm supposed to be figuring this out by going to college and experiencing life. Kid of hard to in a wheelchair with a bunch of pain and other limitations that I won't go into.

I had to take a medical withdrawal from college twice because I got more pulmonary embolisms and other clots. I had to quit all of my sports including the one sport that kept me going all of these years. I have a black belt in Tang Soo Do Karate and getting back to Karate was my motivation to get through all of the pain, physical therapy, rounds of chemotherapy, and all of the new clots that I had to deal with. Now, there is nothing anyone can do except prolong the inevitable. Physical therapy will not help at all anymore and we have no treatments left to try. All we can do is stay on the current treatment that is once or every other week that is extremely painful and hope for the best. This treatment is not a solution and I am still clotting and have clotted over it before. With all of my limitations physically, I cannot do anything that I used to love. I can't even play guitar or drums anymore because of my symptoms. I can't even teach Karate because of my limitations. This time I can't just tough it out and push and work as hard as I can and everything will get better. No, this is the healthiest I am going to be and I cannot do anything to heal and my doctors can't do anything either. This is going to kill me and there is nothing I can do to stop it and no way of fighting to get healthy anymore. 

I have been living at home away from college and completely isolated except from my family and doctors. Sure I'll see people sometimes, but all of my friends have ignored and pushed me away because they don't know how to react to my condition. I don't tell them much, but the things that I do scare them off. Some have been better than others, but overall...I feel really lonely. I have to put on a happy face and pretend everything is fine for people to normally talk to me. I want to tell them something besides I am not doing too great, but I'm still hanging in. Either they can't take it or I can't talk about the way I feel. I just wish I could have one person that i could be real with that isn't someone I'm paying to talk to. Because I still can't even talk about everything with my therapist. I haven't been treated right by people who were my friends and who claim to be. Now I need them more than ever and I know that won't. I just need someone to talk to and be myself around because I haven't felt like myself in a long time. 

I wonder if I should consider suicide because it could end all of the pain I experience everyday and I could go out on my own terms. This disease would not be controlling me anymore and I don't want to let it win. I don't want to be beaten by this disease because that means that it truly did control me and decide what I can do. However, that isn't me. I always try make my decisions based on what I would do before this all happened. I never gave up throughout all of this and I will never give up. I will do whatever it takes because that is what I would do and the medical decision that MRN: 020342855 is not always the right one. If I die tomorrow it would be fine. I just want to die fighting and not locked up in a hospital room.

The problem I have is that I can't do anything really. I can barely walk across the room so what can I do for my last 6 months? I don't have many passions and the things I want to do I can no longer take part in. What can I do and what do I want to do are questions that I don't have the answers to. But right now by doing nothing I feel like I have no purpose. I want to live again and I want to feel like I am part of something. I want to be me. That's it. And I don't know how I can do that anymore. I have had to throw away everything about myself that defines me and now I don't know how to live the rest of my life. I just know that I want to stay as true to who I am as much as possible and just be me.

 

 

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Dear Friend:  I just woke up to see your post.  You  are a beautiful soul, and to me you are definitely not a number. You have a purpose which is to remind many of  how precious life is.  Please don't think of suicide. I will do all I can to help you.  I'm here for you whenever you want to talk.  

Diane Eileen - YourLettersfromHeaven.com

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For the pain and depression there is a wonderful person by  the name of Michael Sealey who produces some beautiful hypnosis and meditations.  Here is a sample: 

 

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Right now it's 4:00 in the morning here, and my eyes frankly aren't that great.  But I'll keep posting healing music and ideas for you.  I've worked as a volunteer for hospice before, and have seen how gentle music can help with anxiousness. 

 

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Gilday26   

Hey man. 
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 

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