Zen and the Little Things, Zen and the Heavy Things

“Thick, heavy snow is blanketing my yard as I type; a March “Kaboom” as our favorite local weather guy would say.”

I wrote this last week.

I have realized I cannot write anything if my family is around. And that 4-8” of predicted snow turned into 16” of high volume, tree-shattering, power-killing snowmaggedon. We spent a fair amount of time that day trying to save trees in our yard (mostly successful), and then spent 5 days without power.

Thank God for our post-Sandy generator. It can’t power EVERYTHING in the house, but water/heat/and most of the lights make all the difference.  We are so grateful to all the crews trying to get Jersey back up and running.

At the same time, a lot of our good friends in the brain tumor community have been in really challenging medical situations. The peril of having so many close friends in a community of smite, especially a community of smite characterized by the marathon-like duration of the smite, means that most of the time a lot of people we know are getting smote.

This past week or two has been Smitefest Extreme.

The heaviness of the snow and no power was dwarfed by the heaviness of our friends’ struggles. We have been in similar spots. I don’t know why we aren’t now, and I feel grateful and guilty and so deeply concerned for our friends who are mid-struggle right now.  One of my children scans in 2 weeks. That is heavy on my mind, too.

So last week’s blog was one line that never got published.

I have thought a lot this past week about the heavy things. 

I can’t lift them, or throw snow shovels at them (tried that with a horizontal cedar at the height of the storm, to try and get some of the high snow off, that actually worked), or make the heavy things change.

In the respite we’ve had, I have realized how much working to notice the little things helps me. It doesn’t make the heavy things go away…but noticing the little things lightens my perspective.

I tend to be a hyper-noticer anyway (survival skill for a teacher), normally noticing causes me anxiety or frustration, I notice ALL THE THINGS.  In a certain karmic balance, my husband notices NONE of the things, so…yes.  His response to my “hey, we scan soon!” reference—“Oh. Well, we can’t worry about that now.” AND THEN HE ACTUALLY DOES NOT WORRY!!! If he could sell THAT skill, we would be bazillionaires. Well, except that I would buy all of that, thus creating a weird market vortex between supplier and demander…

ANYWAY, In the last several months I have really worked to notice not just who is chewing gum in class or how many crumbs are on my floor, but I am trying to acknowledge and appreciate the world around me, to be in the present moment and to let those little noticings of nature and life and people soothe my troubled mind. Does that even make sense?

The peculiar pale blue cast of the snow crevices on our street (never seen that before!), the frost on the edge of each fallen leaf, the shape of my dog’s pawprints in the snow, the sound of the robins returning even though more fresh snow fell today…

These little noticings remind me that the universe is bigger than the heavy things. Heavy things are heavy…but life is not JUST defined by those things.

Noticing the little things enables me to be grateful for the little things. I can’t get a friend’s chemo approved or help a child in a dire spot, or ease the strain of medical testing for a child we love—but taking time to appreciate the smell of snowfall or the vibrant colors of my felt-tip pens or the soft warmth of the heating pad my sister made—in noticing these things I find strength to unbury myself from the heavy things.

THEN I can better support our friends. I need to be available, not buried.

This is a work. I have a long way to go, and if we get buried in smite again I am not sure if I will be able to maintain this practice.  But I have to keep practicing, strengthening the “notice the little things” muscle. Our respite demands no less.

What little things do you notice that help soothe your soul?

Great Expectations

Great Expectations.

Is the worst book EVER, so don’t worry, I am not going to blog about that.

(Since I was long ago an English major, I can diss major works of literature with impunity, no worries!)

I have been pondering expectations. Maybe that’s an inaccurate way to say it. I have more been realizing that some expectations will never come to fruition (my 18th century farmhouse in the country), some are in jeopardy (will not speak of those here), some are worth fighting for (my history students CAN do what I expect them to do! They are awesome! So…Yeah!) , and some just have to be set free (my paperwork will NEVER be organized. It just won’t. Get over it, self).

Expectations can be empowering or paralyzing, and this is sort of what I’ve been pondering. I had a throw down with someone recently about expectations, mine are high, this person’s are low, and our expectations seem to spill over into every area of our parallel experiences. My high expectations shape my behavior, the ol’ “I believe I can fly….I believe I can touch the skyyyyyyyhiiiiiiigh” (I am so sorry for those of you who will now be singing this all day). I feel energized by high expectations. I feel like a ninja (which is only natural, since of course I am a ninja in heels every day from 9-12:15). I almost feel…optimistic! Sorry-I should have warned you to sit before I threw THAT idea at you. ; ) The person I was conversing with has very low expectations, and that is reflected in their approach to everything, it’s contagious and sad.

I came out of this conversation really bothered. Expectations have a ridiculous amount of power.

I know the month BEFORE we started chemotherapy, expectations were killing us. My poor 13 year old was a wreck of anxiety and dread. I was about the same. The fear of the unknown made us expect the worst. This was paralyzing to both of us, and by extension made things kind of stinky for everyone who lives in this house. Even Santa was bummed out by December at the Casa Camiolo.

Actually starting chemo was a relief. The expectation was worse than reality, even if we have to now admit that even “easy” chemo like Sorafenib rots.

As we cruise towards scan day in 10 days, I am trying to keep my expectations at bay. Generally my expectation of what April 5 will bring keeps me up past midnight and wakes me at 5 a.m.. Who knew expectations have claws that clutch at your insides when your insides really, really want to be sleeping?

We’ve had about 30 of these days before, closer to 40 if you throw in kid #2s forays into the Siemens Magnetom. Many of them have been ok in context, ye olde “stable, with some areas we need to keep an eye on”. A very few have been actually good: “rock solid stable!”. An extremely memorable handful have been trainwrecks of woe—“tumors have grown”…”malignant transformation”…”chemo failure”…”new tumor”. So my expectation are certainly tempered by experience. And I just can’t expect that these 6 pills a day are actually working. That seems presumptuous, somehow. I mean come ON, we are the Camiolos, Harbingers of Smite.

Call it defensive pessimism, call it glass half empty, call it negativity, call it Kristin (or half a dozen other girl names, with 6 sisters I answer to most names), but that’s kind of how it is.

At the same time, I have to be a ninja for my G. And she doesn’t think she has such a bad case of NF. She actually SAID “I don’t have such a bad case of NF” a few days ago…!!! That blew my mind. In her mind, life is what it is, her feet hurt from chemo, she is so very tired, can she have some pretzels, and did Scotty McCreery or Matthew West come out with a new album yet?

And that expectation, that there ARE folks worse off than she is, and her favorite singers will keep on singing…that gives HER power. How could a child go through what G has gone through over the last almost 8 years and NOT be swallowed by despair?
If I can carry that for her, I am glad to be useful as well as ornamental.

I don’t know what to expect next week. Right now my expectation is kind of whomping me. But I also have a secret plan for what I will do if my expectations prove wrong…

It’s big. And it involves God’s greatest natural resource…

Stay tuned.

(because once again I have a delusional expectation of blogging more often, I have to do something with all the stuff that races through my head when I can’t sleep. Thank you, Captain Insomnia!). ; )

What Not To Say: I Thank God Almighty That I'm Holier Than Thou

The Post I have Hesitated to Post…

Previously, on What Not to Say…

So I had a block of time last Thursday to just sit and think, in between snippets of Adele and the jackhammer like sounds of a Siemens Magnetom, and I realized that there might be a niche market for a new show called “What Not To Say!” A couple of my fabulous sisters will swoop in on unsuspecting people who say ABSOLUTELY THE WRONG THINGS when dealing with catastrophe. They would burst in unannounced, surprising the miscreant mis-speaker, and take them on a whirlwind training of WHAT NOT TO SAY. At the end, the reformed guest will be better prepared for the next challenging conversation with someone who is being smote.

This episode is a tough one. I should say up front, I am devout within my faith tradition (Roman Catholic). So I speak from love, really.

WHAT NOT TO SAY #3: “I thank God Almighty That I’m Holier Than Thou!

This episode is tricky. Certainly the “God doesn’t give you more than you can handle” can fit under this heading. We have relied on our faith to get us through catastrophe, and obviously this particular point will be different for people with varying ideas about God and the cosmos.
But perkily saying things like,

a. “I have a special needs child (not life threatening), and I just told God, I know you may want him back someday, and I am ok with that, if you want him back he is YOUR child, I am only given him to take care of for a little while!”

…well, I think I actually said, “I am not ok with that. I want to keep my child, thank you.” I almost snapped and said “Oh no you didn’t!”, but I refrained. Barely.

Look, dealing with catastrophe is so personal. If you deal with a challenging but not catastrophic event with the attitude I just outlined above, kudos to you for achieving such a high level of spiritual maturity. But that might not be a helpful gem to share with a parent fighting pretty desperately TODAY to KEEP THEIR KID HERE WITH THEM. HERE. ON THIS PLANET.

We believe in Heaven here. We regularly pray to all of our friends up there, especially those who meant so much to us early in our brain tumor journey, friends who battled cancer or brain tumors who did not survive. The night before G started chemo this time around I imagined calling all of our Heaven friends together…Nora, Marge, Sandra, young Nora, Hadley, Timmy, Dani-Ella, Emma, James, Joe, all the Grandmas & Grandpas…I called them all, and they came together in a big room in my mind, and I spelled out the game plan…they needed to bug God every day for this blasted chemo to work. We would hit the tumors with everything known to science on this end, and they needed to pull for G on their end…G knows she has a team on the other side of the field, and that helps her. I could really see this in my head, and it helped ME.

We believe we will all meet again. But super-spiritual reflection about “I’ll give my child back to God freely!” from someone not in the battle doesn’t come across as shared wisdom, but rather as condescending spiritual one-upsmanship .

We may need to come to ACCEPT that reality some day. Just not today.

I have heard other brain tumor parents share their acceptance of their child’s imminent death in a way that is heartbreaking and full of dignity. This is different than someone whose child IS NOT in that moment saying “I’m ok with God taking my child”. It’s easy to say that when He shows no sign of doing such a thing. Theoretical acceptance is Very, very different than the mightiness needed to gently lay down the sword and hold your child as they step into Heaven.

To my brain tumor and NF family who have had to live this mightiness, my heart is with you.

b. “Well, this is God’s will for you…” or “God’s will be done”…

Yeah. I guess that is supposed to be comforting? Or that in saying this is what God wants, we are supposed to be ok with it? I am not ever sure what the thought process is behind this statement. Maybe it’s just a way for the speaker to a) make the utter unreasonableness of catastrophe seem logical or b) once again emotionally separate themselves from the pain of the other person’s moment. I really don’t know. But it isn’t helpful.

When G was first diagnosed, we had a week in which a) I found out she was going blind—like, truly blind, she had been compensating so well, and we had so many other chemo related issues then, we didn’t know b) something I treasured was lost c) our patio table got smashed in a storm. This was in between miserable treks to a hospital in another state every week…and G coming into my room every night at 3 a.m. just feeling sick…That table breaking WAS the straw that broke this maternal camel’s back. As I cleaned up broken shards of tempered glass from my patio, I burst into a song I composed for the occasion entitled “God Really Hates Me”. It had a catchy tune…

Ok, so I needed more than a little help at that point. I think God helps us through tough stuff, I don’t so much think His Joystick Really Does Get Stuck On Smite (yes, another Top 40 Hit of that particular season of my life).

Saying that catastrophe is God’s will for someone is kind of like singing the refrain to God Really Hates Me, but filling in YOU for Me. At least that’s how it comes across. Even Jesus had trouble with God’s will right at the end of His life. Did He do what He had to do? Yup. Did He pray “please God take this cup away from me?” Um, also yup. So if JESUS had to struggle with this idea….I figure parents struggling with this are in good company.

Whatever your beliefs about how God works, the “this is God’s will for you” doesn’t help people mid-crisis. Really. Unless you actually saw a heavenly finger writing those words on a wall, don’t say it. And even then…yeah. Please don’t say it. God’s will for someone else isn’t really ours to say.

Thanks to Christine Dalessio over at http://feminismthecatholicfword.blogspot.com for reminding me of this last one. I think I had blocked that one out!

c. I should add, too, from my friend Blythanne, that God may in fact “open a window when He closes a door”, but unless you are a nun singing to the Alps in a classic Hollywood film, OR you actually are sitting on the windowsill, maybe this should be a statement to avoid as well. Folks mid-crisis are not willfully ignoring God’s way out…and telling us the window will come is just insanely frustrating. Maybe it is supposed to be encouraging. But it is just insane frustration wrapped in a cliché.

What TO Say: Like before, “We’re praying for you”. That’s enough.

I know in really, really hard times, I have no words for prayer, and I deeply appreciate my friends and even strangers who pray for us. That’s a language that is never wrong, no matter the differences in dialect or vocabulary.
Or, if saying anything seems wrong, just send a card that says you are praying or just thinking of the person. One of the most beautiful things we ever received was a card that told us someone had arranged for a healing mass to be said for G at a special Catholic shrine…and that person was one of Dave’s coworkers, a lovely gentleman…who happens to be Jewish. We were so moved by that, the effort he must have gone to to figure out HOW one arranges a Mass…at a shrine…in another country…

With no words, he helped us along the path.

And….the worst thing ever said in the name of religion to parents mid-catastrophe: (and this is NOT something we have experienced, but I have friends who have endured this horror),

d. And I will simply answer it without speaking it. Kids don’t get sick because their parents are bad. Period. God doesn’t punish people by making their children sick. A child with a catastrophic illness is not a rebuke for parental sins. Yes. I do know people who have been told this about their children. Really.

To those who say those kinds of things: read your freaking Bible. The New Testament parts (ie the more “recent” chapters). The ones where He actually said things like “hey, this person wasn’t born blind because of the sins of the parents”. …I mean REALLY.

And I know, honestly, that I’m preaching to the proverbial choir here, NOBODY who reads this blog has ever done that. I am confident of that. But it merits saying, if only because of my friends who have had to suffer those hateful words. And if you want to share this…be my guest.

Sigh. Those are my thoughts about What Not To Say : Holy Edition . And thank you to all of those people who do pray so faithfully each day for my G. We are grateful. And I’ve stopped singing “God Really Hates Me”, so there has been SOME kind of healing here, right?