Wednesday, December 6, 2017

Gratitude and the Darkness

December darkness creates a lot of challenge for me. Only in the last couple of years have I begun to identify exactly how much I struggle with shorter days and early nightfall, a darkness that coincides with some really challenging medical anniversaries for us. December has long, long been a challenging month—and my inability to type words seems somehow connected to that.

And yet I LOVE December, too—decorating the house, pulling out my collection of nativity sets, baking mountains of cookies, working on secret projects for my family and friends. Sometimes I can just barely stay on the edge of my funk by diving into all of these things.

About this time last year, through the recommendation of a friend, I started a daily gratitude practice. I know that the idea of gratitude being a useful tool against pervasive funk isn’t by any means a new thing I discovered—certainly the idea has gotten a lot of press and even research to support it over the years. For me, the PRACTICE of gratitude was something new.

Each day, making myself think of (and share) 3 things I am grateful for—from big stuff to days where all I can say is “I am grateful for socks”—has been transformative.  It really is a PRACTICE, something I have to do, just like yoga or exercise or the piano (which I never did, hence my utter lack of piano skill, to my own dismay. Gosh I hated practicing).

But gratitude is so easy to practice.  We used to have our kids write grateful notes on little leaves that we would stick on a paper tree I taped to our pantry door during the month of November—and honestly, I meant to post about gratitude IN November. But keeping that practice alive throughout the year has really helped me to reframe even the most challenging days as not just a sum of yikes, but a yikes that is superseded by the good.

Granted, some days the practice is REALLY CHALLENGING. Like, Hanon finger exercises END of the book challenging. (I knew they were there, even if my practicing was anemic at best). The last several weeks have had a lot of challenges in a variety of areas—and yet in all of those challenges, or at least around them, I am learning how to find something to be grateful for—and I share it.

Gratitude shared becomes a little point of light—and reading OTHER people’s gratitude becomes MORE points of light—and while the darkness is not dispelled completely, at least I know for certain that the darkness will never win. We always have something to be grateful for. Always.

This day is the anniversary of my daughter’s last relapse/shunt revision/descent back into brain tumor treatment.  Facebook keeps reminding me not only of the terrible fear and despair of that week, but more of all of the people who posted on our behalf, seeking prayers and support for our family. Even as I struggle with reliving the pain of those days, I am also so, so grateful and comforted by the people who surrounded us with love and support.

A dear friend of our family suffered a terrible heart attack a day ago—he is a former colleague—his daughter, also my friend, brought our family a meal on my daughter’s ORIGINAL diagnosis day, an act of love I am forever grateful for. (side note, Jen makes a fabulous chicken divan). John (her dad) was my son’s teacher when my daughter was at the most dire parts of her treatment back in 2006. We were inpatient at a hospital out of state for 22 days during that school year—and that was in addition to regular chemo trips, scan days, etc. John’s kindness to my son during that year, the way he carried him through the challenges our family was facing—that is something I will always be grateful for. John’s son is a pediatric cancer survivor, and thus he truly understood what our family was going through—and addressed the fallout of our family’s trial (as it played out in my 10 year old son) with compassion.  I am so grateful, and in this present awful time for John’s family, I am reminded of all of these gratitude moments even as I pray for my friends.

The frustrations are real. The anxiety—super real. The search for purpose is real. The challenges of painful memories have so long been my reality. And yet the practice of gratitude is helping me find a path through these things.

So November is over. (Yeah, news flash). But the opportunity for gratitude continues.

Give it a try. I promise it helps, even –or maybe especially- on the days where finding gratitude requires some stretching.  The practice of gratitude is truly transformative, and it doesn’t require any special equipment or infomercial paraphernalia—just an open mind.

I am grateful for all of you who slog through these ramblings. Grateful for the opportunity to share words and thus my own journey. Grateful that I am on my 3rd bag of Cadbury and still have multiple bags left in the cupboard. Grateful my son spent so long in the shower I had time to actually write the first draft of this after procrastinating since Thanksgiving. Ahem. See—it’s easy. J

Give the practice of gratitude a try.

And please, please pray for my friend, John Stein, and his family.

Monday, November 20, 2017

The Slug Returneth

I wish I could say that I missed a full week because 
           a)      I won the lottery
           b)      Tim Gunn called and said, “We should do lunch, let’s make it work!” and I spent the rest of the week figuring out what to wear.
           c)      We were so busy raising money/doing advocacy work/saving the world that I had No Time to Write.

Unfortunately, the correct reason is 
d)      I am a slug.
Even this photo is sluggy.
But if I try to get it perfect, I may retreat into utter procrastination again. 

I guess self-awareness is the first step to improvement, but ugh. Slug-o-ramba. 
I have words. 
I have plans for words. 
I simply had no oomph to sit and type words. 
Some weeks are more ugh filled than others, for whatever reason. Chemical imbalance + work stress + schedule stress + a lot of friends getting medically smote AGAIN + holidays on the horizon just left me wandering the house a bit and trying to breathe deeply. I did get a lot done, but I just could not rouse myself to write anything down.
That is ok.
Ok, so it’s really not, the whole POINT of a deadline, even a self-imposed deadline, is to create some self-accountability. But in the big picture of life—so what? I missed a few days. 
This can be a tough time of year. Last year at this time things were very difficult. We lost a few good friends to the same medical situation my daughters face.  Facebook kept reminding me of our terrible December 5 years ago (and the weeks leading up to that, which in retrospect read like a horror novel where you know something bad will happen as soon as the protagonist opens the door, and you are like NOOOOOOOOO Don’t open the door! But they do anyway…ugh).  The early dark really oppresses my brain.

In listening to a podcast last week, the speakers referenced how when we try to get ourselves together, all sorts of things hit the fan or pop up—this has so much been my experience the last month or so. But they went on to add that things come up so they can be healed and worked through. Woo! 
But yeah, it still is a WORK. 
This year I am in a better place mentally, physically, emotionally. Cadbury made a fall chocolate, which helped take the edge off the early dark and kept me going until the Christmas ones appeared at Target last week. Even so—I have to be ok with the occasional slug week. 
I read a pretty mind-blowing little meditation this morning, written by a man named John Hull.  He spoke of how he needed to set “little, immediate goals” to get through the days:
“I must be content with little answers. This requires the careful planning of each day, which must be broken into its compartments. Each hour must have its particular skills, its various techniques, its little routines which enable something to be accomplished successfully. Otherwise, I will have a sense of pointless desolation, a feeling of being carried helplessly deeper and deeper into it. This becomes so sharp that I am almost overwhelmed….one fights such a thing by minute steps. One adopts tiny techniques which help one to do tiny things step by step.” 

Get. Out. Of. My. Head.
I am not the only one.

Tiny steps keep us moving right along. And I am not the only one who some days can only take tiny steps, or who needs to actively map tiny steps forward (like, writing “walk dog” on my to-do list in my bullet journal so I feel like I got something done, even if I add it after I actually walked her). 
I am grateful for the podcasts and writings that push me forward, and for the bullet journal that gives me a place to organize my distracted brain.  I am grateful (AGAIN, times infinity) for the medical respite that allows me to work on getting in better shape mentally and emotionally.  I MUST use this respite to be there for our friends in the thick of the battle—to be there for my children, who are growing up (or already grown up) before I could even say “Bob’s Your Uncle”—to be there for myself instead of avoiding thinking about life. 

So slug week is past. Onward. I can do it. We can do it!

Peace out, friends.

Thursday, November 9, 2017

Zen Playlist (ish)

Ok, so apparently any time I post about the continuing work of Zen, the Universe hears that as a challenge…and a cosmic “Challenge accepteeeeeeeeeed” echoes eerily through my home. Something like that.

Sometimes things just don’t get better, or other things pile on, or the cumulative effect of many small irritations in my life becomes  a pile of “be a speed bump”itis.

Today is one of those days. But I have to go to work/circus/get G/home/deal with ongoing car woes/youth group stuff for R/grades are due/etc. No time for speed bump.

So today, I upped my time with the light box thing (yeah, still waiting on that to help, but the Mayo Clinic says sometimes it does).  I did my praying time.  I worked out with weights and felt like Beast Mode. I ate a donut (thanks, mom!). And now I am listening to loud music. LOUD.

Today the work of Zen is riding the wave of What the What?? that has marked the last few weeks by listening to motivational music and dancing it off.

I cannot dance.

Like, not at all.

Like, robots have actually travelled from the future to ask me to please never do the robot. I have the rhythm and coordination of a gourd. Those inflatable guys you see outside car dealerships have better moves than I do.

So what?

Today’s Zen is embracing the value of dancing/singing the irritation and frustration of many situations out, even if dancing looks a bit like frantic flailing and the singing is…what it is. The dog isn't howling along, so that is something.

“I can dance if I want to…” (currently playing in background). Yeah. That. So two of our cars are dead. So we have family situations and work situations and school situations.  “We can dance!”

Weirdly, it helps.

And when my family is home, and they find my manic happy dancing annoying, that is just a bonus. ;) Then I can say “you don’t want dancing? Challenge Accepteeeeeeed!” as I flail around them to “Walk Like an Egyptian” or “Safety Dance” or the B-52s or Sia.  They love that so very much. 

Fun Fact:  It is hard to stay crabby or stressed when you are trying to be the crazy medieval lady from the Safety Dance video.

So this is no newsflash, again—but today, all I have is a playlist of happy/determined music and a dog who woofs when I tell Alexa what to play next.

What’s your Greatly Annoying Season Playlist? What songs do you use to tell the universe you are ready for whatever challenge it sends?

Some of my favorites:
Shiny Happy People, REM
Not Afraid, Eminem
The Greatest, Sia
O Fortuna, Carl Orff
Unstoppable, Sia
Anything ever by the B-52s, the sillier the better (Mesopotamia!)
Tubthumping, Chumbawamba
All Star, Smash Mouth
Safety Dance, Men Without Hats
Walk Like an Egyptian (super silly), the Bangles
I am a Rock, Simon & Garfunkel (more if I am mad)
Won’t Back Down, Tom Petty
Lose Yourself, Eminem
Shake it Off, Taylor Swift

I could go on (and on and on and on)—so what’s on YOUR playlist of YEAH, BRING IT!?

Monday, November 6, 2017

Doing the Work

Zen = Work.

Yes, guest blogger Captain Obvious is in the house today.

Again, I am late. Last week two of our three family cars died ON THE SAME DAY. And not just like, merely a flesh wound—the one is too expensive to repair (ie is now being driven by firstborn with a supply of coolant to keep it from perpetually overheating) and the other is a challenging repair but STILL cheaper than buying two new cars unexpectedly at the same time. But until it is fixed, I am in “borrow a car to get anywhere” mode. I only work part time, so that makes sense.

I am actually kind of surprised, my initial response was not !@((#@&#*& AAAAAAAAAAAAAAAAAAGH, but more of a “hey, nobody is dead. We can get a new car”.

For me, this is kind of a Zen Gold Star.

That said, the stress of having no car, of trying to help the two afflicted car owners deal with their collective frustration and stress, of dealing with ongoing other painful stuff here, of navigating work and school and schedule drama left me with no oomph to write anything.  For me, anxiety and stress are really contagious. I need some emotional Purell or something so I can be a better support for people in my life who are struggling with things instead of just catching their stress. Can somebody invent that?

On second thought, don’t. Being empathetic /compassionate is not something I want to limit. I just have to do the work to keep myself afloat while helping others stay afloat.

Zen = Work. And at the end of last week, I could only do the work in real life, not on paper (or, more accurately, screen—although I do most of my planning, etc., on paper. I need the physical act of writing to help me get my brain in order).

As I have been trying to help some of my family members with stuff, we keep coming back to this—we have to put in the work to see results, success, etc. Zen is achieved, not really discovered, even though I keep referencing my search for Zen—it is really the work of searching that will hopefully maybe finally achieve some state of peace.

I think the real gift of this time of medical respite is that I can work at using the tools of yoga, writing, bullet journal, prayer, books, podcasts, the little light therapy thing that I have not seen any effect from yet but I am hopeful, exercise, sewing, connecting with friends, practicing gratitude,  etc. to try and get through those moments where I feel skin crawly anxiety. Having the mental space to think “you must work NOW at dealing with this feeling instead of just lying on the floor” is a gift. I am really working at using it.

But gosh, it IS a work.

About 10 minutes ago as I was wandering around my house I actually out loud said to myself “SIT DOWN AND JUST WRITE SOMETHING!’. The dog looked a little perturbed (I know, Coco, you don’t have thumbs, I was talking to me), but today the work was getting my ample backside in this chair and typing something. Lesson plans are done. Test is written. Only one thing left to grade. SIT AND WRITE.

This is part of my work. 

I guess I just encourage everyone today—keep doing the work. Knowing that getting stronger and healthier and more balanced is a work helps me get past my sluggishness sometimes. Just like I keep going to my job, I need to keep working at me, too.  

Do the work. Achieve the Zen. Keep movin’. We can do it.

Tuesday, October 31, 2017

Zen and the Gift of Compassion

Sometimes, Zen isn’t possible.

Well, TRUE Zen practice probably is super Zen-y all the time. But sometimes, in regular person life—Zen is just not on the day’s menu.

Maybe that isn’t quite right. More accurately, I guess positivity is sometimes elusive. Sometimes, things just rot. On every level, they do. Difficult situations just take so much emotional energy, sometimes just hanging in there has to be the end game. Hanging in there in a not freaking out way is some kind of Zen, right?

Heck, I spent the better part of a decade hanging in there WHILE freaking out. I don’t recommend that. But truly, sometimes hanging in there one hour/minute/second at a time is all you can do.

It’s been a challenging week at the Casa Camiolo on the parenting front (medically no drama right at this second knock on wood etc.). Not my story to tell—I can just say it has been a week where I have been ransacking my toolbox trying to figure out how to best be the support I need to be in a very painful situation.

After so many years of yikes, difficult situations put me into pretty serious anxiety overdrive in about 8 seconds (see the above reference to “Decade-Long Barely Hanging In There/Freakout”). I am not amused by this reality, but I do think now I am in a slightly better place to deal with it. I am trying to use –and share-- my tools.

And I refuse to let the silence swallow me again.

I read a meditation this morning by Dorothy Day, one of my social justice heroes, in which she said “Compassion—it is a word meaning to suffer with. If we all carry a little of the burden, it will be lightened. “ While I feel emotionally spent and physically wrung out, I deeply, deeply appreciate the privilege of being able to be there for someone in the exact moment I deeply appreciate the gift of my people being there for me, to help me stay strong enough to help where I am needed. For so many years people shared compassion with me…in the last week or so, I have been profoundly reminded of what a gift it is to be able to share compassion.

I guess in some ways, sharing compassion IS a kind of zen. Just being with someone who needs love and support and shared humanity forges deep connections that withstand the stupid frenetic craziness of daily stresses. The big stuff is harder, but truly does make us stronger, connects us more deeply, makes us more courageous.

So hang in there, everybody. Even if it is only one tiny step at a time, together we can keep movin’ right along.

And again, apologies—my PLAN was to write about my attempts at positivity…not so much the “still lurking about!” ala Bugs Bunny version of things. But I would rather write SOMETHING than let the yikes make me silent again. (See yet again, reference to “Decade-Long Barely Hanging In There/Freakout”).

Thursday, October 26, 2017

Finding the Toolbox When Life Hits the Fan

I am not sure why I am surprised.

I should have known that as soon as I began to really focus on trying to put into words my attempts at Zen, all sorts of things in my life would just hit the fan. Thankfully, today things are ok medically—but for some weird cosmic reason, I can’t seem to have EVERYONE and everything in my life chill at the same time.

Challenge is like a Mothra sized mosquito buzzing around my life these days. 

I listened to a podcast on Monday (Oprah Super Soul Conversations) in which two Sandy Hook parents talked about how they have dealt with the aftermath of that terrible event. The mom referenced her “toolbox”—the things she goes to on days when life seems too difficult to bear.

I have been thinking about that term/idea a lot these last few days, as I struggle to balance my own personal train on its precarious track.  I realized that is kind of what I’ve been trying to do—to assemble a toolbox.

Of course, much like my ACTUAL toolbox, it’s kind of a mess. Reorganizing our ancient toolbox is on my to-do list. But in the last 2 weeks I have been really, really challenged to dig into my Zen Toolbox to try and get through some difficult moments/situations/days.

To clarify (OH UNIVERSE) I never prayed for practice sessions with my focused work on not being a psycho. Ugh.  I already had cheerful bloggy stuff PLANNED.

Note to self, NEVER PLAN.

I love planning. Planning is my favorite. My lists have lists.


I am the poster person for “the best laid plans…”

Anyway, I am needing to dig deep these days. I just have to acknowledge that:

 a) it’s ok if I am not on my A-Game when hard stuff swarms about. Just continuing to move right along has to be enough. No one is harder on me than I am.  If the papers don’t get graded for a few days, that’s ok. If the sheets get changed one day later than I planned, that’s ok. If the cheerful blog about The Happiness Project remains in draft form, that’s no biggie. Chill already on the A-Game business.

b) Sometimes using the tiniest tool is a good step. Yoga helps me. So I find a 10 minute yoga on YouTube because focusing longer than that seems too daunting. Podcasts help—so I listen to Kind World, a 5 minute podcast about acts of kindness. Prayer helps—I read one meditation or scripture quote. Being outside helps—so I sit on my deck for 5 minutes and just breathe. Small tools sometimes can at least move towards getting the job done.

c) These moments are when I need my people. So grateful for my people.

d) if all else fails, Pumpkin spice English muffins with real butter and maple syrup are very therapeutic (wipes crumbs off keyboard). I am hoarding my last bag of Cadbury.  

Just keep movin’ right along.

I’m telling myself that today.  What kinds of things are in your toolbox? When it’s just so hard to do the things that help—what do you do?

Peace—and if you can spare us a prayer/dance by the light of the moon/good thought, I’d appreciate it.

*still, I am giving myself a gold star for actually publishing SOMETHING today--a little something, but at least that goal is met. :)

Monday, October 23, 2017

Find Your People

So, basic math being what it is, even I could see I did not post twice last week.

I beat myself up over this for a bit, and then had to let it go. My husband was away on a business trip last week which meant I took on his half of the chauffeur duties here—no big deal, just flummoxed my schedule…and then a last minute work schedule change (which always throws me completely out of whack) and the loss of a dear friend in the brain tumor community…by Thursday night I knew that second entry for the week was not going to happen, even if all the preliminary work was done.

That’s ok. But I will get it done this week.

And really, the loss of my friend Susan inspired today’s post.

Find your People.

Sometimes, it is impossible to be positive, at least for me. Sometimes things rot. And while I can choose to work through things and stretch to be positive, sometimes you need to have your people.

Your people are the people who can hear you in your bad moments.

Your people know your journey—whether through shared experience, or blood relation, or years of friendship—they are not scared off by the hills and valleys.  They stand below the cliff with a pillow saying “ok, so maybe hold on, but if you can’t, I can probably break your fall with this pillow!”—and you appreciate that, even if you know that the laws of physics are not on your side. It’s your people. It really is the thought that counts.

Your people laugh with you, cry with you, give you truth, and stand by you when you can’t stand on your own.  

Your people have your back.

Your people pray when you just can’t even talk to God, or you have nothing at all nice to say to Him.

Your people think of you, and you think of them in random moments of the day.

Your people may or may not be folks you get to actually hang out with. In this age of social media, some of my people are folks I have never actually met—but that doesn’t matter.
Your people find the humor with you in really, REALLY unfunny things.  Oncology humor has an extremely niche audience...your people are cool with that. 

Finding your People, whether it is through online support, or your kid’s class, or your own old friends, is so critical.

My friend Susan was one of my people.

In 2004, after my daughter failed her first chemotherapy and we realized she was simultaneously losing her vision at an alarming rate, I could hardly think. For the first time I truly understood what “going through the motions” meant. We lived 2 hours from the hospital, we didn’t know ANYONE who had the same thing G had, we were utterly alone—supported by our family (so, so grateful to our family—they are our people, too, always), but in onco world we were an island.

In December of 2004 I found a Yahoo group for Pediatric Brain Tumor parents.  That discussion board became a lifeline for me.  Here for the first time were people who spoke my language—who knew about vincristine neuropathy or the grossness of Bactrim. Here were people who understood why I wasn’t all WOOHOO when we finally got a stable scan. I wanted the tumors to be smaller…stable still meant Tumors Galore. I finally found a place where my story and experiences resonated with people, and where I could contribute something other than being the Elephant of Scary Stuff in Whatever Room I Entered.

Side note, if you have something really bad happen to your kid, you are painfully aware in groups of just how much you are every parents’ nightmare, people apologize for being upset that their kid has the flu or a broken finger…which is silly, obviously as a parent you SHOULD care about those things, smite isn’t a contest, it’s ok, I am sorry your kid has the flu, too, cleaning up throw up is no joke.

But I digress, as usual.
Susan and the other parents in that group are my people. 

I found my people literally through an internet search. Yay, Google! 

Over the years, I’ve found more people, and those people still help me get through tough days. My siblings, my parents (and in-laws), my online support friends, my old friends from high school—in different moments, these are all my people.

I have a lot of trouble being BY people sometimes. Finally realized there’s a name for that (social anxiety is a thing! Egads!)—but I am SO GRATEFUL for my people, who get that about me.

Knowing I am not alone--even when I am actually physically alone-- helps on bad days.

None of us are truly alone, even when everything screams YOU ARE ALONE. Everything is a stupid liar. Stupid is not the word I wanted to use, but...keeping it family friendly, today at least. 

My friend Susan was one of my people. She was utterly authentic, always. She was fabulous and loving and faith filled and funny and smart and knew the pediatric brain tumor journey so well.  Susan was one of those first moms I knew back in the day…she was “my people” for so many brain tumor parents.

The world will miss her…but her people will not ever, ever forget her.

Peace out.

Find your people.