I am writing this piece not as an angry or annoyed person although I can understand why you might think I am. The reason I am writing this piece is to help people understand things from the side of the fence that I happen to be standing on. I used to be on your side of the fence but reluctantly I have been dropped onto the other side now. I now have the perspective of being on both sides of the fence, something that you probably don’t, unless you are unfortunate enough to be in the same exclusive club that I am in.
If I trust you enough to share my terminal diagnosis with you, when I ask you not to share it with anyone else I mean just that. If you are married, yes, I think it’s okay to share it with your spouse but no one else. I happen to be a deeply private person and I strongly dislike the thought of being the latest topic of gossip among friends or former coworkers. Think about it, I trusted you enough to tell you some intensely personal information about myself, and you betrayed that trust by then sharing it. Regardless of why you did it, you betrayed the trust that I had put in you. There is a good chance I won’t make the mistake of trusting you again.
If you are a religious person then I am grateful for your prayers and well wishes. Please, please, please do not talk to me about being saved or finding my personal saviour. Please do not ask me to pray with you because quite honestly I don’t want to. I have tried to live a good life and be a good person, if there is a God and he/she doesn’t think that is good enough then I guess I am headed for eternal damnation.
Please don’t tell my wife what she has to do, or what she should do for me. I appreciate you may do this out of concern for me but you are stepping over a line that you have no right stepping over. You are visiting for a few hours or days, she is living this diagnosis as much as I am, day in day out. I would suggest that I am now her full time job, but that would suggest she is only looking after me forty hours a week, she isn’t. She is there sun up to sun down, and then all through the night. You may not see it, but she is my very own super hero and I could not possibly ask for more than she is already giving me. She deserves your support as much, if not more that I do.
Please don’t tell me how important it is to remain positive. I am positive that I am going to die, probably sooner than you, and certainly sooner than I had planned. You tend to tell me to remain positive right after you have asked me how I am doing. You asked and I told you, I didn’t go on about it, I just answered your question because I thought you had asked me sincerely wanting to know. I am accepting of my situation and would be grateful if you would be as well. We don’t have to dwell on it, and if you don’t want to know then just don’t ask me. Last point here before I move on, please realize that I happen to think I do have a positive outlook, but the horizon I see from where I stand, or sit actually, is significantly different than the horizon that you may see from where you stand. Let's just agree our perspectives on being positive may be different. Maybe just getting out of bed today was a huge positive step for me, far bigger than you can imagine.
Please don’t tell me about your second cousin once removed that went to Mexico or some eastern European Country for some miracle treatment and was saved. This also applies to cures or treatments that you have read about on the internet. I am not interested in chasing false hope with what little energy that I have left. I am putting my trust in the Medical Specialists who are supposed to be the most knowledgeable about my disease and following their direction hoping that they have my best interests in mind. Yes, I am also putting a lot of faith in those large profit hungry Pharmaceutical Companies hoping that their obscenely expensive drugs are helping me more than they are hurting me.
Okay, here’s a biggie, never tell me you know how I feel. You don’t. I could go on and explain this more, but I think we can both agree that I shouldn’t need to. You just don’t.
This is my philosophy about my illness, and it applies to adults and children, If you have a question and want to know about how I am doing or about my illness, it is okay to ask me anything, really anything. Having said that if you are uncomfortable talking about my illness that is okay too, I won’t force unwanted information upon you. I am an open book, open me or leave me closed, I am good with either.
So as I am wrapping this up I want to apologize. I know that learning about my diagnosis might be tough emotionally for you. After all if it happened to me it could happen to you right? Maybe I have just thrown your own mortality in your face, and that might make you very uncomfortable.
So now I shall subject you to some unsolicited advice, I feel it only fair after telling you all the things not to do that perhaps I suggest a few things that maybe you could think about doing that would be helpful. Be there, show up, don’t become a ghost. The kindest thing that you can do is to just continue being my friend. If you can come visit, please do. If you can help us get some things done, please do. If you can give my wife a few hours or days off, please do. If you can have us come and visit, please do. If you live far away, call, text, email, set up a weekly video call, just keep being my friend because I really need friends these days, they help me get through my tough days. The friends who have become ghosts, well they make me sad because obviously I was wrong about the kind of friend I thought they were, having said that I also accept that some people are just ill equipped to deal with my situation.
Yes going through this can be a very valid test of friendship, I assure you if you were in my position some of your friends would really surprise you by the amazing things they might do for you, and other friends by how they just suddenly disappear from your life.
So in closing this off, let me ask you these two questions. What kind of friend are you? If you were in my position, which of your friends would step up and be there for you?
David, thank you for your candid, honest, and very personal post. You very eloquently describe what many feel.
David, you express exactly how I feel. I've come to cringe at the questions, "How are you?" And "How's your day going?" I made an SSA official cry during a recent visit about disability benefits. He started complaining about his job and his co-workers. After a few moments I told him how much I envy him because he has a job and his health and that I would be happy to clean toilets for a living and not have ALS. Of course, everyone dies, but we see a different horizon, as you say. We know the why and the how of our death, but not the day. We face our mortality every moment of the day. I appreciate your post.