2013: Of Pinterest and Pollock

2013. Whoa. Cue Momentous Music or whatever seems appropriate for the dawning of a new year.

Ok, the dawning of a New Year Camiolo-style, aka 4 days later than the ACTUAL dawning of the New Year, with some Appert-style worrying about not having started on time thrown in.

I am determined (not resolved, that would be doomed to failure) to get my rear in gear on the blog front and actually keep writing this year. I have some things planned…

I know, it’s been a month…but Advent and chemo and tragedy in Connecticut and school and cookies and trees and family love and family avoidance and stomach bug collectively conspired to leave me wordless.

I so aspire to be all Pinteresty, all lovely little thumbnails of creativity in tidy rows of inspiration.

(imagine lines of lovely things here, all ice cream sodas and hand-batiked saris and shelving for powder rooms made out of antique farm equipment and little girl dresses woven from vintage grosgrain ribbon. Pretty, right? Enjoy the tranquil beauty...)

Ok, come on back now.
Unfortunately, most days my brain feels like this, all Jackson Pollocky:

Jackson Pollock was the Man.  (from ibiblio.org)

So maybe in 2013 I will just try to go with the Pollock-like flow.

Ok, I know I won’t. I know I will still try endlessly to get my life, my brain, my world into neat Pinteresty lines and soft-lit photos. But maybe this year I can try to be ok with the Jackson Pollock (who honestly I do love), and celebrate that that is just how it is in my head.

One of the best things I ever read comes from Gretchen Rubin’s The Happiness Project. She talks about resolving to Be Gretchen…that is, to just be ok with being who she is. She lives in NYC and does NOT spend her days munching on exotic cuisine or wandering through galleries and all that NYC has to offer, and she felt unsettled by her lack of metropolitan-ness, but finally realized that it was OK TO BE GRETCHEN, a homebody who loves her neighborhood and is generally satisfied to stay close to home with her husband and kids. Not only is it ok, it makes her happy, and as such becomes an important life principle.

Maybe this year I can try to get PAST pondering that insight to that point of being ok with NOT being Aretha Franklin (ok, that is going to be hard), ok with NOT being outgoing or organized or full of chutzpah, with loving fashion but generally ending up in yoga pants and a t-shirt. As a side idea, maybe I can really MAKE TIME for those things that I love, even if they are not huge or earth shattering, things like painting or visiting historic sites or just going for a walk. MAYBE if I spend less time bewailing my un-Martha-Stewartness and just be my neurotic, creative self, the year will be be happier in spite of the Medical Elephant that is hogging our beat-up couch.

How great would it be for my kids to have a mom who isn’t always trying to be a better version of someone else?



except Aretha. It would still be cool
to have your mom be Aretha.

So while I still feel a little bit like 2013 is a freezing cold pool that I only want to get into one toe at a time (or, more accurately, kind of just want to stare at from the warmth of a beach chair), I do have some thought that maybe, one step at a time, and with some special things planned (happy anticipation is awesomely therapeutic), we can keep moving forward.

Heck, maybe eventually I will actually join Pinterest and line up Jackson Pollock images I like. Hah!

So Happy New year, friends…and  anybody else have any New Year Determinations? Random love of Jackson Pollock? A beach chair?

What Not To Say Part II: Merely a Flesh Wound!

Part II of What Not To Say, my tv show where people find out what NOT to say when talking to someone battling catastrophic illness. In this episode…

2. Merely a Flesh Wound!

a. “It’s all going to be ok”

I would suggest that for most people battling any kind of catastrophic illness with their children, the whole THING that makes it catastrophic is the underlying theme of “This really, really might NOT be ok”. Saying that it will be might make you feel better, but it makes the warrior or caregiver want to drop kick you (ok, maybe that’s just me) because it invalidates the depth of yikes being faced.

In Chemo Part 1 Section 2, back in 2005, one mom said to me, after finding out G had brain tumors (because G happily mentioned at her brother’s Little League baseball game that she was going to go on a Make a Wish trip but she wasn’t sure why—awkward!), “oh, but if the tumors are benign it’s not a big deal, right?”…to which I think I responded something like, “well, she’s still on CHEMOTHERAPY, and we can’t get the tumors out, and there’s no room for them to grow?” ; I didn’t even get to the vision loss and the neuropathy and the anxiety issues… and that was the last she ever spoke to me about it.

We don’t use the B word anymore. Nothing about the last 7 years has been benign. But I digress…

No parent EXPECTS people to understand the yikes. Truly. But don’t downplay it, dismiss it, or otherwise indicate that It Really Isn’t a Big Deal. Better to say nothing than to trivialize the crisis.

Honestly, I have some friends who CAN’T talk to me about my daughter’s illness, and I respect that and love that they are still my friends…the reason they can’t talk about it is BECAUSE the woe is so huge and scary. And part of ME being a friend to them is respecting THAT pain. I have friends who feel deeply about what’s going on, so deeply that they can’t talk “shop”. That in and of itself is an acknowledgement of OUR pain, and I see that as love. Does that make sense?

That’s technically a sneak peak of “Normalcy is Not a 4 Letter Word”…

Anyway, I get that it’s a hard balance between Uncle Clem and Pollyanna, but it is one worth at least trying to achieve.

WHAT TO SAY: “I am sorry. This must really rot.” Just acknowledge the yikes.
Or, “I can’t imagine how hard this is. I am just so sorry.”
That’s it. Thank you for acknowledging the reality of the situation. That means a lot.

b. “God doesn’t give you more than you can handle”

I’ve written about this before, in an earlier blog. He does. That’s ok. I mean, He does, but saying He doesn’t again diminishes the pain of the moment. It does not EASE pain, it just brings on this feeling of “well DANG, I am even screwing up being smote because this sure as heck FEELS like more than I can handle!” God may give us grace for each moment (sometimes even THAT is hard to tell), but that’s a different issue.

WHAT TO SAY: “Hey, I’ll pray for you.” Or, “I wish I could make it better.” We wish that too, and we appreciate the acknowledgement of our pain. (at least I do).

A sub-whatever of this is

c. “You are SO STRONG!”

Ok, so this is not an offensive thing to say. It’s just kind of…separating? Isolating? Like, the person battling is so strong in a way that makes them Different. Catastrophic illness is different and isolating enough. While this is really not said in a way that is meant to be sniggy—to the contrary, I think it’s supposed to be upliftin?-- admiration or whatever that is (fearful respect of the “there but for the grace of God go I” variety? ) isn’t quite what a warrior/caregiver needs.

Speaking from personal experience, “strength” is not generally the feeling that one has mid-battle. Sleep deprived? Stressed? Irritable? Hungry? Not hungry? Unfocused? These are better descriptions of way I feel most days. As a parent caring for a child with a catastrophic illness, I would LOVE to just hide under my bed some days. I do vacuum under there, it’s clean and my bed is pretty high up (it’s kind of old fashioned), so I would fit. I could live under there and just pretend that none of this ever happened.

Heck, there were days when my kids were all little that hiding under the bed seemed like a plan. Those toddlers can ALWAYS find you. I didn’t have a choice THEN. I certainly don’t NOW. Maybe doing what you ‘ve gotta do is strength, but it just feels awkward and stupid and kind of isolating to hear it said that way. Until I have a patriotic bustier and a Lasso of Truth (and the physique to literally carry that ensemble, ahem), I am not Wonder Woman. So this should go on the list of things to please not say.

WHAT TO SAY: “Your kid is so mighty.”

I know. This seems like the same thing, but I don’t think it is. In my mind, mighty acknowledges that something tough is being faced, perhaps with anxiety and trepidation but ultimately with resolve. It’s a semantic difference, but mighty seems more accurate. Also, I think my kid is WAY MIGHTIER THAN I AM. So thank you for noticing. : )

Next Time: I Thank God Almighty That I'm Holier Than Thou .