Something they don’t tell you in the welcome packet for terminal diseases, is how hard it is and will be, when telling your friends and family. Actually, telling people has been surprisingly, one of the hardest things I have had to deal with. There’s a strange guilt I feel when I invite someone over to my house, only to make them cry and then make them try and choke down a steak and asparagus. I find myself apologizing for ruining their night. While I understand that there is no reason to feel this way, something inside me feels guilty. I thought that as I was moving forward with telling people it would get easier but the reality is, that it doesn’t. The words I use and the actual act of saying it may have gotten easier as it is more rehearsed, but a new friend or family member finding out does not have a rehearsed reaction. While this stupid disease is the catalyst for sadness in my friends and family, I haven’t been able to disengage myself as the barer of this bad news. Often it feels as though I am not only burdened by the weight of the disease itself, but also with the task of delivering the news. For my friends and family who have been there for me throughout everything good and bad in my life, an email just doesn’t cut it. It is my cross to bare, and it has been one of the most difficult aspects aside from the obvious.

Another strange development in the “telling people” department has been those we kept it from. And we did keep it from some, sometimes because the time wasn’t right. Sometimes the situation wasn’t right. And sometimes we just needed a break from devastating news delivery. However the question, “hey how’s your summer going? Or what’s new?” Offered another challenge. Another set of guilty feelings to deal with. It felt as though we’re keeping this dirty little secret from people, and lying through our teeth while saying everything is fine. Most of me wishes it actually was this dirty little secret. Eventually I would crack and come clean to face my punishment because I could no longer stand to bare the weight of my crime… Or something like that

Author: adventureoflivingblog

My name is T. For now I'll remain anonymous. I'm not really sure why, but it feels right. In July I was diagnosed with ALS. Faced with the choice, "Life or Death," I've chosen to live. But not just to live, but to really LIVE. This is my Adventure.

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