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My positive view of my terminal disease

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The Pity Party!

6/21/2014

8 Comments

 
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ALS CAN KISS MY ASS!

I've been told by those close to me that my posts are too positive and people need to see the bad times too. Today's post will probably be the one and only time I do it.


There are days when I wake up and I'm inpatient for my death. Today has been one of those days. The thought of suicide has been present throughout the day. I just can't shake it. I have constant feelings of frustration, melancholy, rage and anxiety. I am on edge constantly and I just want to withdraw from people. These days are normal for someone with a terminal illness to experience. Anyway, it's not like I can do anything to harm myself having ALS and all, at least not at this stage of paralysis. I have been fucking robbed! My life, once so full, has become small and insignificant. I have no life to speak of anymore. My day revolves around my computer. I literally exist in a ten foot arc around the computer that I am writing this blog post on. I hate my life at this very moment. If my arms worked I would put my fist right through the damn screen! My life has become so limited. I have no privacy to speak of. I'm never left alone and I have to be assisted with almost every activity with the exception of typing on my special keyboard and I need help getting set up on it. So I guess I don't have any activity I can do by myself. It's just so damn frustrating! I hate my life at this moment. If I could close my eyes and die right now I would.


The worst part is how I misplace my feelings on others. I try to ignore these feelings but it's useless. Dee noticed before I did that I was having one of these days this morning but I told her I wasn't. I just chose to let it build up until I hit this fucking abyss! I made the mistake of going on Facebook today hoping I could distract myself with some friendly chat which helped for a bit. That was until a very good friend told me some good news and I became angry because I was jealous that I won't be able to ever experience excitement like that ever again. I turned this good news on them and probably ruined their night (I'm very sorry 25!). I really just want to die, today! ALS has screwed me over. There is no purpose for this damn disease. Don't tell me God has a plan for me unless his plan is to receive a black eye from me! Please, please don't go there. I don't want to hear it today. Give me a good night’s sleep and I'll be just fine. Fortunately, these episodes usually only last a day. This is my pity party and nothing you can say will make it better.

I had my son wheel me into my backyard at dusk so I could be left alone to watch the stars. He came back out a minute later with a glass of water for me and sat down next to me. I told him the obvious, that I wasn't doing well today. I told him how I wanted to die and began to sob. He stood up and came over and held me. "It’s okay to feel that way, Dad", he told me as I apologized for how small I had become and began to sob harder. "You’re the strongest, biggest man I know. I love you Dad!" was his reply. I then apologized for not being there when he needs me. He said, "You will be, I already think of what you would do if I have a tough decision to make. I'll do that when you are gone too!" What a hero my young man is. I'm already on the mend because of my Alex.

8 Comments
Lauren crosthwaite
6/22/2014 02:05:49

FUCK ALS!!!!!

Reply
Michele link
6/22/2014 03:35:12

Oh my Friend! You share such deep thoughts all the time. You went so much deeper and darker with this one. Thank you for being so honest with us. BTW, Alex is the amazing son of an amazing dad.

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Kelly
6/22/2014 13:23:27

Hey Picasso... No tears, you have raised Alex to be a fine Young Man. Be Proud !!!!

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Katie
6/23/2014 01:27:54

Thank you for sharing.

Reply
Frank Hoppen
6/23/2014 04:15:42

Thanks Don, I always thought there is something missing in your head. Something what made you come up with these nice blogs and not being mad and wanna kill ALS and yourself. Now you blog is another one I have to stay in front of and salute! You are a hero! With a heart too big for your body. And your family /son... like Mother Theresa and super heroes as well. Read the book 'one soul, many bodies'. Yes, you will be gone, but we all will connect and have already done that. Will make us all save from the horror and give us hope. And smiling. Event into ALS's face. You are my heroes!

Reply
Michele link
6/23/2014 06:23:47

Frank- perfect description of our friend. A heart too big for his body is EXACTLY RIGHT.

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Jeff Y
6/27/2014 02:38:45

Your raw transparency is brave and beautiful.

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Timothy Young
4/19/2015 11:51:58

Alex, thank you for being there to comfort my brother. Love Uncle Tim

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