Reaction rant

One of the hardest things is telling people what’s going on with me. I totally understand that it’s shocking and I generally cut people a lot of slack when it comes to how they react to these news. However, some reactions are just so fucking awful, that I have to be impolite for a moment.
Two things before I start:
If you’re a friend thinking “I don’t think I said that, did I?” Relax. You probably didn’t. You’re fine.
And if you’re a friend thinking “Oh no, that’s what I said!” Relax. You’re not alone. You’re fine.
And I still love all of you.


My all-time favorite: “If I were you, I would try absolutely everything.”
Actually, any sentence that starts with “If I were you…” is probably not worth finishing because I will have stopped listening. You’re not me. Be thankful. Shut the fuck up.
But the example above is offensive on so many levels: First of all, it seems to assume that I am not already doing my best and “trying everything”. Second of all… Thankfully most people think of these extreme health challenges as theoretical occurrences but… this is my reality. So my question is, on a purely practical level, how does one try absolutely everything? How does one manage, in terms of time, energy and money?
A very dear friend, who I still love very much, had this reaction and then went on to suggest I go see a spiritual healer in Brazil. Now, while I do try to keep an open mind and I do want to “try absolutely everything”, spending a ton of money to go to Brazil to see a spiritual healer go into a trance, become possessed and then cut into my body with an actual scalpel… What can I say, I’m not quite there yet.
Don’t get me wrong, I appreciate getting suggestions. I put them all (including the Brazilian healer guy) on a list and when I feel like the time has come to try something new, I do it.

I also love when people explain to me (sometimes in great detail) how cynical they think it is that I of all people blah blah… And how awful it is that I had to sell my studio… And what a horrible, depressing disease ALS is… Yeah. Thanks. I hadn’t noticed.
As a general rule I’d say, don’t sound more depressed than I do.

And when I do sit down to tell someone about what’s going on, I absolutely love being interrupted. Example: “… and then two years ago I was diagnosed with ALS” “You should get a second opinion!” “Oh. My. God. A second opinion! Can you imagine that in two years I haven’t thought of that?! No? Neither can I. Why don’t you let me finish and then if you still think you’re smarter than me and in five minutes you can come up with something I haven’t thought of in two years, by all means enlighten me.”

So, what are you supposed to do? How are you supposed to react to a health shocker or really any kind of extremely bad news? Well, thankfully I don’t have to come up with that. Susan Silk and Barry Goldman did it for me in the LA Times:

I highly (highly!) recommend reading this article but if you don’t have time to do so, here’s my two cents for talking to someone in a crisis: before saying anything, ask yourself, “Is it helpful? Is it kind?” And if you don’t answer at least one of those questions with a big YES, stay silent. Compassionate speechlessness, I think, is a perfectly acceptable reaction.

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  1. I like the kvetching article in a way. Although I do sort of feel that if everyone played strictly by those rules, it would preclude the person at the centre of the ring ever really knowing what the people around them who they care about, were truly thinking or feeling. Maybe if I was at the centre of the ring, that would be what I’d want or need but I don’t and can’t know. I know there have already been many occasions where there has been a space to say something, but there just IS nothing to say. I am sure there have been many occasions when things sound one way when echoing within the walls of ones own head and reality, and then sound unfortunately different when echoing outside of the speakers head once spoken, or inside of yours once heard, coloured by your thoughts. Hope Canada is feeling good to you, look forward to seeing you again soon

  2. Well, leave it to you to ruin a “perfect” formula…
    You’re right, of course. Like most things in life, I suppose this one too has to be dealt with on a more individual basis. Maybe it depends on the length of time the crisis lasts? My thing has been going on for two years and who knows how much longer it will take… So of course I do, in the meantime, want to be a friend to my friends (because apparently other people’s lives do not get put on hold while I’m dealing with this). That reminds me of something else that’s happened a lot and needs to stop: if I listen to you (not you personally but in general) kvetch, then please don’t end by saying “Oh, I shouldn’t be talking to you. Your problems are so much worse than mine.” There’s no need to remind me.


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