Rabbinic Insight from Chronic Illness

Image:  A woman walks through a greenhouse full of cacti. (Pixabay)

An op-ed appeared in the New York Times a while back. The piece, In My Chronic Illness, I Found a Deeper Meaning, is so good that I would be quite happy for you to stop reading now and go read it – even if you don’t read another word I have to say about it.

Rabbi Elliot Kukla describes the significant challenges of living with chronic illness. He writes about the problems of credibility every one of us with chronic illness face: it’s “in our heads” we are “making it up” we are “dramatic” and/or “lazy” and/or just plain “crazy.” You can hear all about that if you go onto Twitter and search for terms like “chronic illness” or “disability.”

He describes the horror of being a number, of having one’s troubles become “a monetized affair.”  The article would be valuable simply because he articulates all of this so well.

What’s different about this article is that Rabbi Kukla doesn’t stop with an eloquent description of the situation. He keeps moving towards meaning. “We are born needing care, and die needing care, and I am no exception.” Independence is in fact a delusion: we are all interdependent.

He maps a terrain that we will all travel someday, even the most fit and healthy among us. The take-away, though, is something that I think we all need right now: a reminder of the worth of every person.

In a time when human beings are treated as bargaining chips, when a small, wealthy part of humanity seems to care absolutely nothing for the rest, when it is so tempting to star in our own dramas and get lost in our private pain, this article takes the larger view. Go read it.

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The Rabbi and her Green Stamps

Remember Green Stamps?
Remember Green Stamps?

Anyone who spends much time with me hears about Green Stamps. Once upon a time, the Sperry & Hutchinson Company printed these stamps.  Back in the 1960’s we received them as a premium at the grocery store and various retailers, and if we saved enough (usually by pasting them in special saver books) then we could trade the Green Stamps for all sorts of goodies: toys, housewares and other loot. I don’t know what happened to Green Stamps, but they are a fine metaphor for one aspect of my life.

I’ve got multiple disabilities: I have hearing problems, I am prone to cyclical depressions, and as if that weren’t bad enough, I’ve got mobility and pain problems as well. The actual diagnoses are not important (and frankly, not for the Internet) but the effect on my life is that I have to pick and choose carefully how I spend my energy.  When I talk about “saving up my Green Stamps,” that’s what I mean.

Recently I ran across Christine Miserandino’s Spoon Theory which is a similar concept, brilliantly expressed. (Stop now, and click that link. It is an almost perfect expression of a very important concept.)  The bottom line is that for some of us with chronic troubles, every choice has to be weighed and considered, because when we run out – whether it’s spoons or Green Stamps – the day is OVER.  If we somehow get into a deficit, Heaven help us, because it will take weeks or months to recover.

I write about this not to whine but to say to you: this is how some of us live. If you see me or someone like me parking in a “handicap space,” don’t stop me to fuss at me.* You (1) can’t see my disability and (2) I am not going to stop, because if I stand there for more than 5 min I will break out in a sweat and eventually fall down and never run my errand. Don’t tell me that if I lose weight it will be all better. Don’t tell me about herbal supplements, meditation, medical doctors, or the miracle surgery your Aunt Flossie had. Trust me, I’ve heard it all.

But you want to help!  I understand that. Here’s how you can help: When you see me, or any other person disabled by chronic illness, don’t try to fix things. Assume that my medical affairs are my private business (just as yours are your private business) and behave as you would to anyone else. Invite me to join you, and then don’t take offense if I tell you I really can’t. Because it’s not personal: believe me when I tell you what I need and don’t need: I know exactly how many Green Stamps I’ve got in my pocket.

What is hateful to you, do not do to any person. All the rest is commentary; go and study! – Rabbi Hillel

 

*If you think someone is abusing a handicap space, you can (1) leave them a note on the dashboard or (2) report them to the police. Just remember that you might be wrong.