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.

Urp.
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.

Ugh.

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.

Monday, October 16, 2017

Tchotchke Galore


If I was a drag queen, or a film noir star, my name would be Tchotchke Galore.
Sadly, I am neither. But through the last 13 years, tchotchke have helped me when I couldn’t focus on much else.
For my non-Yiddish-using friends, tchotchke are little decorative things of small value—knick knacks, bric a brac, etc. If you are a minimalist, or a hard-core Marie Kondo protégé, the tchotchke galore path to zen is probably not going to be one you would take. You will take one look down that cheerfully cluttered path and quickly dive back into the most recent issue of Simple Things.

I love Simple Things, too.


I love all the things. 
I am very much a visual learner—so SEEING all the things helps me stay on track.


When my daughter was first diagnosed with brain tumors, she was 6. It was the week before the start of 1st grade. She went from a sassy diva playing Candyland with the PICU nurses to a very, very sick oncology patient overnight. Literally in 48 hours we went from normal to watching our child come out of brain surgery. We were rattled to our core, our entire family.  The first three or four  months, as G dramatically lost vision, developed severe OCD related to her tumor growth, endured weekly chemo at a hospital 2 hours away, a chemo that had her up every day at 4 am FOR THE DAY, struggled terribly with school and at least one teacher who didn’t understand that her behavior was NOT a “character issue”, but rather a @#*#^@^ brain tumor ravaging her brain…well, those first months were brutal in a way that quite honestly shakes me even as I type it here. Sigh.
Good thing I am over it. *cough
I could not focus on ANYTHING.  I had two other children, a 9 year old and a 2 year old who needed me to be mom, and I went through the motions of life, but barely. 
Early on, I needed a tangible, visual focus to help me cling to sanity. I dug out all my gray embroidery floss and learned how to make a friendship bracelet from my sisters (several were teens at the time), and I sewed the word HOPE in beads on that bracelet. 

I wore it until it disintegrated. Then I made a second one, and some that were just plain gray…

They still live in my nightstand.
I know it is hard to read, sewing letters on a friendship
bracelet is not as easy as one might think.


I needed HOPE to be VISIBLE to me all the time. I needed it on my wrist, like a quarterback keeps track of plays.  

I moved on to silicone bracelets that said “G-FORCE!” on one side, with G’s trademark smiley faces, and “ALWAYS HOPE” on the other. I wrote out scripture verses (Jer. 29:11 was a favorite) just to keep in mind that even though I felt so very, very hopeless…especially as G failed chemo one, and then did a year of chemo two and had a new tumor show up, and then started chemo three, which just blasted her system…and then learned that maybe her tumors had gone malignant and our timeline was going to be dramatically shortened…and THEN got a reprieve, a miracle of “nope, just a weird NF thing” after a biopsy, so we got to restart chemo #3 …


I needed some hope.
I needed to see it when I could not bring my mind to it.

Having a visual reminder kept me going when I could not just think of hope.

Through the challenges of the years following the first 2 horrible years, including many progression scares, actual progression, and another few years of chemotherapy,  visual reminders continue to help me. For years and years I carried a little booklet about Human Suffering with me, and never got past the first few pages (it might STILL be in my hospital bag). I just couldn’t focus. But a pin that says “Brain Tumors Suck” or “No One Fights Alone”? That is weirdly empowering, at least for me.


Now that we have a little space from the worst of things, at least for today, I have a few new pins—one says “Chose Hope over Fear”…and the other says “Kept Going”.*  I have a bracelet that says "It's not a sprint, it's a marathon".  Some days, seeing those reminders—that I DID do these things, I did keep "running",  even if barely, or only because people dragged me along—just seeing that helps.

I have a necklace that says “Hope is the thing with feathers, which perches on the soul, and sings the tune without the words and never stops at all” (Emily Dickinson).  I wear it ALL THE TIME. All the time. (Thanks, Zulily).  I almost need a line item in my budge for “inspirational stuff”. On bad days or good days or any day I need that reminder of the tenacity of hope (a lot of days, glad it’s a plain silver necklace) I wear it. On my nightstand I have a little rock that has the word “Hope” engraved on it.  On my china cabinet I have a tile that says HOPE, which a fellow brain tumor mom made for us at family brain tumor camp.  


Visual reminders help when I just can’t get my brain around thinking about hope.

Somehow, the tangible reminders are little tiny anchors in my day, holding me to the path I am desperately trying to stay on.

So if you are in the thick of whatever battle you are in, big or small—maybe find a little visual reminder to yourself, using whatever word or idea empowers you most in the moment. Write it on an index card or post-it (I am the queen of post-its, to my tidy husband’s chagrin).  Find it on a pin or piece of jewelry or a tchotchke at Hallmark. You might be surprised by how much it helps.

What sorts of visual HOPE/Strength/Endurance tchotchkes have you found that help you? I am always looking for new ideas.  

I think I might wear one of those old gray bracelets today…

*These pins are from Emily McDowell Studio www.emilymcdowell.com –she has some fantastic stuff(some of it uses language not everyone may be comfortable with, just as a n FYI). 

Thursday, October 12, 2017

What the Heck is the Convoy of Zen?


So what the heck IS the Convoy of Zen? 
In my day job, I am a high school history teacher—and my students know I am a beast about precision of language, which is kind of funny since I am being pretty free in my application of the word “Zen”. 
When I reference Zen I mean the fruits of traditional Zen meditative practices: peace, thoughtfulness, working with intention, acceptance of the present moment.  In my usage, zen (lower case) is mental space, freedom from anxiety—basically the opposite of my normal spastic freak-out default mode.  I have zero success meditating (Z.E.R.O.—my internal voice Never. Shuts. Up.), but the simplicity and “being” of Zen practice make sense to me within the framework of the religious tradition I live by (Catholic—I have not had much success with Catholic meditative practices, either, and by not much I mean super close to Z.E.R.O. Urp.). 
                               *Zen = Not Perpetual Freak-out Mode*
In my one brief and awkward stint with therapy the counselor suggested exploring mindfulness, and I scoffed pretty massively. SCOFFORAMBA galore

We were in the thick of medical things then; now I get that I needed a little space outside of day to day medical crises to realize that accepting things and just working through that acceptance is probably healthier than the denial/rage/spastic creativity approach I tended to take to deal with the marathon of aggressive low grade brain tumors...

 (“You need a song about chemo? I CAN WRITE YOU A SILLY SONG ABOUT CHEMO, GIVE ME THIRTY SECONDS”. We were legit the Village People of the oncology clinic, silly hats, hand motions, and all).
But in the middle of everything, I could not do mindfulness. I wanted things to be fixed/better/not a catastrophe every other second.  That is what it is.

(Side note, therapy is a super useful thing and I really should have kept going more than like, 3 times.  Some things really require professional help. I will um, add that to the zen list. Yes. Ergh....)

---------->ANYWAY, keeping up the near frenzied holding-it-togetherness of those years proved unsustainable once the dust settled and I had to actually process “What the Heck Happened Here?” and more importantly, “Now What?”

I also tell my students that history rarely works as a strict chronology. Timelines are a tool, but one little line with date dots does not a history show. History is much more of a tapestry or web, interconnected fibers crossing and recrossing and affecting the paths of other fibers…
My own zen trek is kind of like that. A little all over the place, but ultimately moving forward, hopefully.

Remember those old Family Circus comics where the kids would march all over the neighborhood and leave a little dotted line trail criss-crossing everywhere behind them? THAT is what it’s like.
So as I try to put all this into words, I ask for patience and an awareness of the tangly wiggly all over the place-ness of how I am figuring this out. Ideas overlap. Some things I have discovered very recently have been so helpful I WISH I had started them earlier, so I will reference them earlier (Bullet Journal, I’m looking at you).  Some things will take longer to flesh out.

I make zero claim to having any deep insights—I feel a little like an ancient explorer discovering a new world in which an awful lot of people already live. Uh, yeah. “Discovery”.
If you already live on the islands of zen I am just learning about, Hello! Glad to finally get here! Let’s have an umbrella drink and enjoy the possibility of sunshine! If not, I hope you enjoy the exploration, too.

Movin’ right along really is better with friends. Thanks for jumping in the figurative Studebaker and coming along for the ride.


Serious Side Note: If you are seriously depressed, or really struggling with getting through each day, please talk to a doctor.  Please talk until a doctor can HEAR you and help you figure out a plan. These ideas here might be helpful, but a lot of them only helped me AFTER I talked to my doctor.  That is another story for another time…but take care of you.


Monday, October 9, 2017

Movin' Right Along -- Back on the Road


Movin’ Right Along is a Muppet Movie reference. I love the original Muppet Movie so very much. When I first started blogging several years ago, as a way to separate my medical writing from other writing, I bounced around a lot of different titles (most of which were taken already) before I settled on this. Movin’ Right Along pretty much summed up what I was trying to do—in the face of a pretty devastating medical reality, I was trying to create some space and keep moving, while randomly bursting into song or terrible puns (It’s a Myth! A Myth!... Yeth?)
The way my brain works—kind of like a giant catch-all junk drawer-- I kept this blog and my medical writing separate for about 3.2 seconds. Here is where I kvetched about manipulative pseudo-science, medical ethics, and eventually told my second born’s story –an entry a day for a month, in honor of NF and Brain Tumor awareness month. Those entries are still up, if you want to read War and Peace of Medical Smite. Urp. Summing up what was at that point nearly a decade’s worth of trauma in one month completely shut down my writing for a year. 

It has been a slow climb back. 

For a long while, Movin’ Right Along in my life has meant sort of a weary dreadmill workout, or more accurately the old camp swim test where you had to tread water for a certain length of time. You knew you probably wouldn’t drown, but you had trouble just moving your feet and arms enough to keep your head barely above water.

The Whooping Cough-tastrophe of 2016, coupled with some pretty intensely bad school situations for my second born, became the final straw on the proverbial camel’s back.  Within a few months of my daughter finally shaking the 100 day cough (spasms that would leave her blue and choking for air) and graduating from high school, I knew I could not just keep treading water anymore. I had to swim for a dock or an edge of the pool or something, or I would turn into one of those creepy underwater swamp people from Lord of the Rings.

So I did. Swim for an edge, not turn into the swamp people.

I wish I could say I then rose up like Jesus and walked on the water. That would make a great story/blog. That would be a bold-faced lie, but gosh it would be a good story.

 Really I just started looking for floaties or lily pads to cling to as I work my way to the water’s edge.  I made some decisions that have given me the space to try and figure out what I am meant to be doing during this medical respite. I don’t know how long it will last. Our family could be tossed into the middle of the sea at any second, always. I know this is true. But I want to be better equipped for that next tsunami.

So in that vein, Movin’ Right Along is really going to tell THAT story—how I am trying to Move Right Along—the books that have helped in the journey, the podcasts that inspire, the practices that strengthen my lungs and my oh so tired limbs, both figuratively and literally.  I am still on the road (heading to New York to break into public television!...er, something like that. ;) ), but I am determined to reclaim the words that left me during our family’s medical crisis, and maybe help build a little caravan of support along the road…like a convoy of zen , or something.

That would be a good band name, Convoy of Zen.

I will try to keep entries short, and twice a week. EEK, putting that into writing is daunting. But I need a goal, and a deadline. I am the Queen of all Procrastinators because I want things to be perfect and can never get things perfect (life lesson)…so I need a deadline—hoping that deadline will be the next floatie I can grasp.

Please join me on the road. I am not sure exactly where we will end up (Bear left! Bear left!—Right, Frog!), but it will hopefully be a positive kind of road trip.

Movin’ Right Along in search of good times and good news,

With good friends you can’t lose

It could become a habit!

Opportunity knocks once, we’ll reach out and grab it,

Together we’ll nab it,

We’ll hitchhike, bus, or yellow cab-it!

Movin’ Right Along—footloose and fancy free!

Getting there is half the fun, come share it with me!

Movin’ Right Along—together we’ll share the load!

We don’t need a map to get this show on the road!

--The Muppet Movie (original)






Sunday, June 4, 2017

Kindness--an Idea Worth Trying


 "Ideas have Consequences"

This hangs in my classroom, this phrase, on cardstock, laminated. Recently, the news in the world and in my own smaller personal sphere shows an awful lot of terrible ideas having consequences that people just don’t think about—or somehow rationalize away. Violence, injustice, selfishness as ideas create suffering, sorrow, and struggle. Aka the evening news.

Here’s a new idea: be kind.

I know. Kind can be hard. We have real issues with people. But the idea of kindness put into action creates brilliant consequences. Kind is brave. Kind is thoughtful. Kind is fruitful.

Kind understands the big picture of things—like maybe no deity wants people killed while enjoying an evening pint, maybe he wants dialogue and work to make the world better, instead of brief acts of horrific violence that scar families and communities forever. Yelling “this is for fill-in-deity-of-choice” (as related in the news) seems like somebody got the idea of what said deity actually wants terribly wrong.

Kind understands that ideas have long term impact – if we treat our planet like it is indestructible, when science tells us otherwise (in small words we should be able to understand), we may end up reaping environmental death while we try to sow economic growth. At what cost prosperity—if indeed any path that ignores Earth’s warning signs can lead to real prosperity? Kind knows that we need to protect the earth for each other, especially for those in the developing world for whom the proffered economic growth is only a distant rumor, and for whom the consequences of environmental disaster are much more immediate and unavoidable.

Kind understands that unjust wages and disrespect of workers (defined many ways) are never truly  “business decisions” Cutting wages or unjust downsizing impacts families, causes real hardship and pain, and does nothing to benefit the greater good.  Working together to solve problems (even “business” problems) fosters greater long term positive productivity and even more meaningful solidarity.

Kind sees every person as worthy of respect. Every person—not just those who agree with us. Every person. This one is hard. Super Hard. As she who references her imaginary book, “Morons and Their Friends” rather a lot recently—this one is hard for me. Sigh. Kind is hard.  I am grateful for all the people who show me what it is to be kind. I have so much to learn from all of you.
Kind understands that people are legitimately (or irrationally, in my case) afraid of many, many things, and it is easier to be brave when your fears are addressed with kindness, not dismissal. 


Kind isn’t warm and fluffy and snooglyboogly all the time. Kind often requires taking a deep breath and listening…and HEARING what other people have to say. Kind can require a hard word of truth sometimes. Perpetuating cognitive dissonance or untruth is a great unkindness.

Imagine if for one day, everyone tried to be kind.

I know, it’s a stretch, but try.

Imagine one day where CNN and FOX had no bad news to cover (although that might be a full day of angst about what is happening with the news?? We have a panel of experts to discuss…). Where BBC could JUST cover soccer (sorry, football!). Where the local news talked only about “human interest” stories, because everyone took an entire day to be interested in other humans and the benefit of humanity at large. Imagine what that would LOOK LIKE. What that would sound like. What that would taste like. Kindness is prolific and morphs and grows the more it is spread. Imagine that day!

Egads.

That would be The Best Day Ever.             

A day of real kindness—the kind of kindness you see after a disaster, when people go above and beyond to help each other—or states and companies take initiative to protect the planet on their own—or people help workers network and find better jobs where they are respected after unjust “downsizing”—or people of different beliefs and traditions sit and eat a meal together and share their lives—or people reach out to the lonely and afraid and welcome them into conversation or even just smile at a person on the street.

What a day that would be.

I wish for one day, just one day, the world could give this idea a try.

I think the consequences would be amazing.


Thursday, May 4, 2017

Compassion and the Darkest Hour


During the early days after my daughter’s brain tumor diagnosis, I was incoherent.
I barely ate for 10 days.
I couldn’t sleep.
My husband and I sort of waded through a fog of despair. I don’t know how else to describe it, that slow motion/breakneck hurtling forward feeling of those first weeks.
In a matter of hours, we went from getting G a Happy Meal as a reward for being good for her MRI to playing phone tag with neurosurgeons in New York and Pennsylvania.
We were utterly broken, and we stood at the epicenter of a sea of brokenness—we are both from large families, and the ripple effect of this disaster battered a lot of people we love.
G is NOT an only child.  At the time, her little sister was 2, her big brother was 9. Trying to keep functioning for them, and for G, pretty much sums up those first weeks into months.

The first blinding lesson of all of this—after the “if a doctor calls you immediately after an MRI that is NOT a good thing” lesson – was that in time of devastation, good people show up.  Even that first day, that first horrible day, a friend of ours had planned to bring us dinner, knowing we had this MRI planned and it would likely be a stressful day. And as she brought that chicken divan to our door—and I was on the phone, crying, begging our pediatrician to just tell us what to do, what were we supposed to do??—I mouthed to her “please pray”.
And she did.
In the weeks following the diagnosis/shunt surgery/port surgery/ start of chemo/almost immediate vision loss/severe behavioral challenges/chemo fail/ regroup, people carried us. Meals showed up at our house regularly. G was inundated with Care Bears and crafts and sparkly things. Our 2 year old was cared for by family during our frequent trips to Philadelphia, 2 hours away. Family members stepped up to take our 9 year old to his baseball games.  I got taken of the mandatory “lunch duty list” at school (one of the very few things I instantly saw as a huge blessing of this awful diagnosis. ;) ).  Random friends of my parents went to G’s school to provide one on one help for her, because she was having such difficulties emotionally, academically, and physically while on chemo. Every day. They showed up every. Single. Day. For the entirety of the school year. For free.
Compassion. We saw compassion lived out, acted on, practiced at a level we had never witnessed personally. It was staggering, and humbling, and life giving.
Being on the receiving end of this level of compassion is not easy—it feels…hard. But we are so grateful.
Over the last 12.5 years since that terrible day, we have gotten better at asking for help—not directly for us, usually (that is still hard), but for research. For organizations that have blessed us, groups like Ronald McDonald House & Ronald McDonald Camp, Children’s Hospital of Philadelphia, Friends of Jaclyn, Camp Sunshine, the Children’s Brain Tumor Foundation, and of course the Children’s Tumor Foundation. We ask and ask, because we want G to grow old, we want her sister to grow old, heck, even though Dave and I are well on our way, I want him growing old with me and firstborn, too!  So we ask. And people have so generously answered us so many times and ways over the last decade and more. We are grateful. Nobody has to do that. We are sort of continuously agog at how awesome people are.
And it is in this spirit that I hope compassion prevails today, in the debate over Affordable Health Care. We know we are NOT entitled to people’s generosity. Generosity and compassion are gifts. We know this. We have been blessed, too, that Dave has great insurance at his work, and all of our medical yikes, the 50+ MRIs (at over 10k a pop, usually—and that is only for one of our NF kids), the multiple surgeries, the hospital stays…those are covered, to a great degree. And we are so, so lucky. G is 18. She will be 19 in July. When my 6 year old G was diagnosed with massive hydrocephalus and multifocal brain tumors, we could not see this day. We are almost incoherently grateful that she has gotten to grow up.
In a few years, she will have to take on her own medical care—our insurance will no longer cover her. The ongoing challenges of the dual brain tumor/NF diagnosis are many, and in every way, shape, and form are the legacy of her pre-existing condition.
 I try to avoid political discourse here; that is not what this page is for. I avoided social media for two months during the election, the political discourse from friends on both sides of the spectrum was so demoralizing to me.  Still, as NF and brain tumors have intersected in our family’s life, so does the issue of insurance and our G’s future. This is personal for us, for G. We have fought so long and so hard to care for her, to help her grow up—and we can try to provide as best we can…
But at the end of the day, we have to appeal once again to the compassion of people we don’t know.  Strangers who, on social media, say things like “your sad story doesn’t obligate me to pay for your health care” (this was in response to Jimmy Kimmel’s monologue about his newborn son).  While this statement is a bit shocking—it is true. Very true. Our sad story obligates no one.  We totally respect this. We can truly only appeal to compassion and generosity, fueled by the conviction that our children’s lives—both in my family and in our community of smite-- are worth more than any actuarial calculation about insurance risk/benefit.
I hope and pray that our elected officials (I called ours!) can see with eyes of compassion, and understand that behind every statistic there is a human being, who has a family and community that loves and values them. Just as the picture of that little boy on the shore in Greece made people understand that refugees are not faceless threats to society, but young children and families desperate for a life free of violence and upheaval, I hope the stories many parents are sharing will help people see that “pre-existing conditions” affect children and adults who just want a chance at a healthy life—folks who make the world a better place by being in it.
Policies have consequences. Nobody is asking for entitlement, just for that compassion that makes us most human.
Thanks, for the millionth (and still not enough!) time to all of those people who have shown us so much compassion over the years. You all have helped G get to grow up. Thank you. I hope that she does not have to fear a future where she can’t afford medical care—I really have to try and trust in the continued compassion of good people everywhere.

Monday, May 1, 2017

May Again


Fall, 2005.

I got to firstborn’s baseball game late. It was fall ball, and I don’t know why I was late, Dave and the girls were already there. But as I walked across the field, I could tell something was up.

The moms on the bleachers were all looking at me as I galumphed towards the field. From 100 yards away I could read their faces.

G had told them. I could tell, from across the field, that they knew the story we had not told.

One mom confronted me as soon as I was within earshot. Apparently G had told the moms quite cheerfully that she was excited about going on her Make a Wish trip. She didn’t know why she was going, but she was going to get to go to Disney World on a Train!

This was only one year, 5 or 6 MRIs, 2 chemo protocols, 3 surgeries into it, so…ok, I have no clue why G told the moms she didn’t know why she was going on her MAW trip.  Um, BRAIN TUMORS?? But she was 7, and DISNEY!

Sigh.

It’s not that we were trying to keep anything secret. Multiple brain tumors, vision loss, hydrocephalus, chemotherapy…that kind of gets public quickly. But baseball was firstborn’s realm, and we knew, at one year in, the effect our story had on people—he needed a safe place where brain tumors did not effect everything. An effect that could be read on faces 100 yards away.

Low grade tumors are hard to explain. One mom said to me that day, “so if it’s benign, it’s ok, right?” Even then I knew nothing about this was alright—but that was what she needed, to be able to be by my chipper, sassy 7 year old without crumbling. I respect that now more than I did then.

May is both brain tumor AND NF awareness month. For our family, the two have been inextricably tied since August 30, 2004.  We are uber aware.  When G told those moms in 2005 about her Make a Wish trip, we were still newbies; the wound of awareness oozed painfully through every day. 

Really, that could have been fall of 2006, after the trip. We’ve had a lot of baseball, and we’re a lot of miles into this journey…she may not have remembered why she went.  This many years of ongoing yikes later, the dates start to blur—which is a horror of a different kind for a history teacher.

This is the first year we have not held an advocacy/fundraising event for the Children’s Tumor Foundation (the NF research organization we do stuff for); this is the first year I don’t have new pins for brain tumor awareness month.  This is the first year in a while we haven’t had an MRI in May (it’s in June, if I can ever get through phone tag with CHOP).  We are no less aware—but we are navigating our journey in a new way.
I still plan to wear my random awareness clothing every possible second. It makes me feel better, somehow. Like my festive Wall of Courage or END NF t-shirts can defy the ugliness of these dual diagnoses? Yes. Yes they can.
My children who are affected by these diagnoses are old enough to have a significant say in how we tell THEIR stories. And we respect that.

 One still leads with brain tumor, then is surprised when people are horrified, and then just plows onward. The other is open about her story, if people already know, but she has chosen NOT to lead with it when she meets new people and works her way through high school.  We respect this, even as I know at some point we will have to face again the horrified expressions of parents who didn’t realize what we carry.  At a school banquet in  the fall folks at our table were talking about a young person they knew who had low grade, inoperable tumors, and how horrible and unbearable that must be…Dave and I just looked at each other. It wasn’t the time. We just couldn’t do it, but awareness gave us a smack upside the head over our house salads.

Meh.


Our work is far from done, obviously. We live with NF and brain tumors every day. We know that NF is progressive and unpredictable. We aren't done. The late effects of many years of treatment, the challenges created by NF and brain tumors are daily things to be dealt with and worked through, if not overcome.  This past year we lost several NF / BT friends, which is excruciating.   There is no way to state softly what that does to our hearts, here. No way. Everything about it is wrong.

But this is our path. We have to try and walk it the best we can, one foot in front of the other.

13 Mays since G’s tumor diagnosis, we are so grateful we have the time to figure out how to keep walking, how to keep advocating, how to have our children take ownership of their diagnoses.

In years past I wrote out our entire story up to 2013. Since then G had a ruptured appendix and whooping cough. Her sibling has had some other things that are hers to tell. The story goes on. If anyone wants to see that, it’s in 2014, I think, May. I just can’t read through it again today.

We are aware. We just need to figure out what direction our action should take down the road ahead. Because Awareness plus Action equals HOPE. Hope is everything. We’ve seen despair. In May, more than ever, we have to cling to Hope. We will cling to Hope. No matter what.

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For information about how to support Neurofibromatosis research, check out www.ctf.org , www.nfnetwork.org, or the NF Family Association at CHOP, and  join our G-foRce! CURE NF facebook page.

For information on research for low grade brain tumors, check out A Kid’s Brain Tumor Cure (www.akidsbraintumorcure.org ); for other pediatric brain tumor research, check out www.cbtf.org or www.curethekids.org

And if you are now singing "one foot in front of the other...soon we'll be walking out the door", you are welcome. ;)