Rocks, Thistles, and the Work

A buck fifty for a spackle bucket full of rocks or thistles seemed like big money back in 1986.

Our new home stood on what had once been a field full of feed corn for one of the last herds of cows in our town. The completion of the interstate would open up this rural spot in New Jersey to rapid development and (on the other side of town) McMansions a-plenty. Our home was a 1980s style box, all square and without character to speak of, a mother-daughter sort of house surrounded by rocks and thistles in an unforgiving clay that dyed playclothes a vague sort of orange-y brown.

We felt like homesteaders on the frontier. This town had no sidewalks or community pool. WHAT?

My parents, in an effort to tame some of the front of our acre and a half of property, paid us kids to gather rocks and thistles. It was hard work, but gratifying—and a buck fifty could purchase a soft vanilla cone with rainbow sprinkles at the local ice cream place.  Eventually grass took hold.

By the early 90s we had grass and a tree in our back yard!

My parents planted a vegetable garden and some trees, mostly flowering pears (before we knew that they fall down eventually) and fast growing willows in the swampy back yard. One summer my dad built a retaining wall along the driveway to give the weird slope some structure against the inevitability of erosion.

Dad's wall today

I moved out, went to college, got married, had a kid, and realized that our one bedroom apartment could fit multiple times inside that giant rectangle of the small side of my parents’ house, so we moved in. We never thought it would be permanent, but the real estate market in Jersey in the 90s was insane, so I planted flowers in pots at the base of the deck stairs that led to our door in the rear of the house, and tried to cover some of the gravelly ugh that persisted despite my parents’ years of work.

Eventually we decided to make some improvements to our half of the rectangle, once we decided moving would be financially irresponsible…and then G got sick (literally the day after we started work on turning the garage under our apartment into a playroom/office—we said hello to the contractor as we left on our first trip to Philadelphia).

For several years after G’s diagnosis, I dealt with stress by moving rocks in our yard.  I moved several tons of decorative rocks to cover the ugly construction gravel under our deck. I dug one garden, then another, then another, hacking away at the clay with a pickax, spending all my angst and despair working the earth. We added good dirt to the clay until things would grow. I built a patio (with some digging help from my brother), placing each paver in a tetris-like pattern until I felt it looked right. I planted perennials, then spread the plants once they matured.

All my black-eyed Susans came from 

one original plant.

I dug holes for trees to try and give us some shade against the western exposure’s heat. I worked and worked. The ugly slope in the back of the house I turned into a rock garden, digging out the overgrown weeds and those immortal thistles, lugging rocks to create little burms.

I built a fire pit out of stone, again finding peace in the heavy lifting.

My spouse, too, works the yard. His is more a work of pruning the overgrowth, saving baby trees in the once-field behind our property by clearing out around them so they can grow. He mulches and shapes and plants, too, in a different way than I do, but he will spend hours and hours outside, doing the things. And now we pay our burly firstborn to dig the holes for new trees.

The tidy mulched areas around plantings are Dave's work

We don’t always work together—our style of working/ways of seeing are very different, and it is way less zen to move rocks when someone is saying, “wait, why are you putting that there?”. I move things and then hope he likes where they end up once he notices.

My parents upgraded their garden fence (we have so many hungry deer and bunnies and groundhogs), and put a patio in the front yard surrounded by flowers and shrubs. “Drinks on the veranda” is what we all call the lovely hours we now sit out there.

34 years after our rectangle went up on that barren scrabble of rocks and thistles and some old trees, our yard is gorgeous. It took so much work, some successes and failures, but now, it is gorgeous.

Panoramic of my yard this afternoon--the same space as the first picture. 

We need to do this in America, too.

After the news of the Dayton shooting, so close on the heels of the El Paso shooting, I went and sat on my patio, surrounded by plants and butterflies and hummingbirds. I just needed to sit in the peace of my garden. And I started thinking about the rocks and thistles and ugh of years ago, and how we had to work and work to make it better.

We need to do this in America. We need to work to make things better. Can we fix all the problems? No. Is there a simple solution? No—but there are steps we can take, quickly, buckets of rocks we can fill to prepare the nation’s figurative soil for improvement. We have the angst and pain right now, we MUST USE IT.

I try not to be political here, and I truly don’t mean this to be a political post. It is a human post, a heart post.  We have to look out for each other. Universal background checks seem like a pretty easy bucket of rocks to carry out. Banning weapons that can kill 9 people in under 30 seconds seems like a pretty obvious pile of prickly thistles to rip out. Will this make the nation perfect and peaceful overnight? Of course not—but just like in my yard, we have to start SOMEWHERE.  

Old ladies should be able to go run errands on Saturday morning safely. Soccer teams should be able to fundraise without worrying that their table is in the immediate line of fire for a shooter coming through the door. Parents should not have to die in a freaking Walmart while trying  to protect their infant. Folks out to enjoy a summer night should not have to wear a bullet proof vest just in case.

When I was a kid, we did not worry about these things. When I first started teaching, we did not need to do lockdown drills or active shooter drills. We did NOT.  

I am a historian. This is NOT what America was supposed to be in the minds of those who founded the nation. It's not. We have to work on this garden and get our plantings in order. It hurts my soul to see this happening again and again.

We may need to try some things to see what works. We may find that certain ways of doing things still bug us (I frequently tease my spouse about how he likes to landscape the woods—like, WHY ARE YOU MULCHING IN A SMALL FOREST??? WE HAVE A HUGE YARD? GOD PUT THOSE LEAVES THERE! My poor tidy spouse likes order so much). But we have to do SOMETHING.

We have to stop actively planting or nurturing weeds of horrible rhetoric, or overlooking when elected officials do—words matter, words matter so very much, and like weeds, poisonous words spread. We have to start somewhere.

I believe in the power of prayer, I also believe God wants us to do what we can do.  Thoughts and prayers are a good first step, but if I just think about the rocks in my yard and pray for the weeds to go away, that is not enough. Action on my part is required. Action on all our parts is required to make any kind of substantive change.

If we work together, and work consistently, and vote responsibly, over time things will grow better.  I have to hope that they will. 

I still find thistles in my gardens, and I think I let my Joe Pye weed get a little too out of control (but the butterflies and bumblebees love it, so I feel little regret), but I can deal with smaller problems when they pop up now that we’ve been working this soil for years. Why on earth can we not do that in America? DO SOMETHING!  We can preserve our second amendment rights AND protect our citizenry (which is what the second amendment was originally designed to do—not to facilitate a free for all in terms of weaponry).  We just have to start somewhere and do something.

Ultimately, I can’t hide in my garden forever. I have a responsibility as a human being to move rocks and thistles beyond my own yard. Please, please can’t we do this together? The reward is so, so much greater than a buck fifty.  Let’s plant peace. Let’s plant mutual respect. Let’s plant listening and hearing and helping.  Let’s do the work, one rock or thistle at a time, towards an America where we can all just be in peace.

All are welcome to come sit in my garden with me. Anytime. 

Moments to Grow

If life were made of moments—

Even now and then a bad one—

If life were made of moments—

Then you’d never know you had one.

                                Stephen Sondheim, Into the Woods

              As much as that song gets stuck in my head on a regular basis—life IS made of moments woven together. Trying to be IN the moment, trying to remember all the moments—this has long been my work. I fear forgetting.

                This weekend held moments that made me stop, and think, and reflect, and weirdly NOT get emotionally overwhelmed by the racing torrent of time and loss that for so long has hijacked my response to most things.

                On Saturday morning some of my former students came to help us with yard work. They are fundraising for a trip, and I know they are great kids, so we got ourselves a little crew to help with the branchpocalypse our willow trees left in our yard after one too many windy winter storms.  I haven’t seen many of my students since I left my old job, so having a few come to my house was lovely.

Spring willow (last year--no leaves yet this year!)--one of 4 in the yard.

We had pros come take down the storm-damaged branches,

don't be alarmed. 

                I looked out my kitchen window as the boys arrived—did they have a new kid in the class? I did not recognize one of the young men bundled up against the cold. I went outside to say hello and realized the unrecognizable young man WAS one of my former students, who apparently grew 6 inches since last June.  Like, now he is taller than I am—which was NOT the case before.  And yes, I went out and said “OH MY GOSH DID YOU GROW LIKE 6 INCHES SINCE LAST YEAR???”

                He did, as did the classmate next to him, which I only realized when standing next to both of them.

                AGOG!

                Ok, so I know this happens, I have a son who grew through clothes before I even took the tags off, and even my formerly tiny child has finally grown to be a short teen—but in context of all, seeing this young man so tall and grown up gave me a moment of joy.

                I know, I know, me leaving would not stunt students’ physical growth—I just felt so happy to see these young people doing so well, growing, working together, chatting about silly things. It was a good moment that reminded me of a lot of good moments in my old job with these great kids.

                Once the yard was cleared, my husband started a job we have long discussed—taking down the swingset. We had put off this moment quite a while since my youngest was loath to part with the swingset, but the steps and rails were rotting despite our repair efforts, and with little cousins who come to play, I did not want anyone to get injured out there. Also, my youngest will be 17 in a few months.

The time had come.

I feared my response to this. I have often written about how hard it is for me to part with pretty much any part of our family history, especially in light of my daughter’s catastrophic illness. The Furby she received after very high stakes brain surgery in 2006 still stands as a creepy sentinel in the top of a closet. I can’t get rid of it. So I figured getting rid of the swingset would be excruciating.

Furby is Listening...always listening...

I remember agonizing over which one we could get on our very limited budget, spending hours looking online in the early internet days.  I remember getting it set up while my firstborn was away at camp, surprising him and his little sister when he got home. I remember the baby swing we had on there for my now almost 17 year old, and all the fun my kids have had out there over the years. So much remembering. So many good moments.

the last swing

But somehow, in this moment, I could remember all those moments and NOT get trapped there. Grace? Progress? Healing? No clue why. Just – it was ok. And I had to stop and say, whoa. This IS OK.

I didn’t see THAT coming. I fully expected angst galore!

Taking down the swingset, ending this era of my parenting is ok.

Letting go of a reminder of when my kids were young is ok—because we made it through. For so long I have been terrified to let go of ANYTHING, lest someday that be all we have left.

But our past can be better honored by taking DOWN the rotting cedar, and putting up something new. We will create a new lovely space out there for new rememberings, new moments of joy.

I am grateful for these moments, for zen flowing where normally anxiety and uncertainty rule.

Growth is good. Outgrowing a job, a swingset, heck, even a pair of jeans—ok, maybe less that one—celebrate those moments of growth. Know that you have them. And keep movin’ right along.

Um, officially outgrew the swing. 

Zen and the Inner Tube

Each step forward or sideways or whicheverways brings new questions, or new realizations. After days of working through ideas and drafts about Do vs. Be and zentasticness,  I found myself dragged unexpectedly back into an area of old resentments. Dagnabit. I can write about zen progress and do yoga and feel good and then a conversation or a facebook post leaves me chewing my pencil and growling about situations gone by. I become a walking dark cloud of interior ugh—which inevitably spills over into my exterior interactions with my family and friends.

Womp womp.

This week also marks seven years since my daughter started an ultimately disastrous clinical trial to try and stop her brain tumor progression. Due to a disturbing phenomenon called paradoxical activation, the trial drug actually made the tumors catastrophically GROW. I have made some peace with the outcome of the trial, after years of wrestling with really difficult emotions about the darkness of that time. Seeing the early days, the days when we so hoped this trial would be a magic bullet, the days when we had to start treatment after 5 years off with a teen and not a first grader (and all the new challenges created by a greater understanding of what was at stake)…seeing these reminders on social media of those early days hurts my heart.

And just like that I realize my wrestling match is not just in the ring of Do vs. Be, but in Get Over It vs. Be With It. 
Somehow I can be with the feelings about the trial fail and no longer be paralyzed with rememberings. Maybe this is just grace at work? I am not sure what it is, or really how I got here. Somehow I have to work/surrender to get to the point where I can be with those difficult unresolved situations from my daughter’s high school years and NOT be instantly dragged back into a cesspool of OH YEAH LET ME TELL YOU HOW THINGS REALLY WERE.  Or where I can see the images of my daughter bravely taking the trial drugs for the first time and not be tsunamied by the emotions of that time filtered through the emotions of 3 months later, when all hell broke loose.

I suppose there is some grace in being able to even write about it?

I am continually astounded by the constant work of mental, emotional, and spiritual health. How progress in self-care and healthy striving continually comes up against resistance and ugly stuff that seems to lie ever just below the surface, dredged up unexpectedly by an image or a word, then dispersing until the uglies settle once again to the bottom of the lake. 

Or road, if one forgets one used lake as a metaphor

 and then is too lazy to redraw and re-upload picture. 

Or imagine I am walking on water, ala Jesus. Uphill.
yergh.

As much as I try to build bridges over this lake, (er, road) I realized this week that I have to learn to be ok with the bottom, and to know that even when the uglies are swirling, they don’t need to drag me under.

It’s kind of like Lake George. Lake George in the Adirondack Mountains of New York is a pristine mountain lake, clear from the surface all the way to the bottom, even to a depth of 15 feet or so. 

Clear water at Lake George ...our happy place.

 We have vacationed there every year since Dave and I married; he has been going there since he was 7 years old. We love this place.  In the rare summer when the weather upstate gets really hot, I will actually float around on the lake (which is always cold. Don’t believe my spouse and third born who will swim in it no matter what. IT IS COLD). I will lie on a big black inner tube that soaks in the heat of the sun while my toes dangle in the cold water. Zen exists in its purest form in that moment. 

Rare photographic evidence of me

 in my inner tube, in the  lake.

Lesson number 1 of Lake Swimming (after COLD!!!): don’t touch the bottom. The bottom is soft and squishy and leaf covered and gross to feel—purely organic matter, just so squishy, and if you walk in it to get into the water the muck gets all stirred up and gross. I have perfected balancing on the tube and pushing off from the edge so I can float without stirring up muck. And if other folks stir it up, I just float in another direction…as long as I am not squidging my toes in yuck, it’s all good.  

Inevitably some little kid gets stuck each year…not literally, but they take a few steps past the sandy bottom and realize EW THIS IS GROSS and holler for mom or dad.  Lesson learned.

Anyway, THIS is what I have to figure out how to do in life. Keep on paddling my inner tube. Soak in the sun and let the feelings settle. I can’t deny their reality. Just like those soggy leaves and twigs and lake soil, the feelings and situations from the past are real and unpleasant—but the bigger picture is so much bigger. There are miles and miles of lake beyond that one roiled area. Just keep floating!

As I pondered this in the past few days, I brainstormed what helps (in an effort to get myself out of the visceral SO’S YOUR MOM! Feelings clawing at me).  Being outside helps. Grounding yoga practices help (YouTube has so many great resources, especially the Yoga With Adrienne series).   Praying helps (I pray all the time, sort of a running commentary with God—so sometimes I’ll go walk the dog, and thus have a little walk/outside/God talk when I am feeling ugh about the lake bottom stuff in my life).  Doing something for someone else helps. 

I have so many tools to work with, really, so many inner tubes to choose from.

                                                                              Rainbow Pegacorn, anyone?

At the same time, being frenetically busy to avoid those feelings can anesthetize the moment, but I know now that busy-ness does not address the underlying pain. I have to learn to Be With Feelings, just like I have to learn to Be OK with Myself and not just what I Get Done.

Get Over It invalidates experiences, squelches healthy understanding of self and pain and life. Get Over It closes down communication (even with our self).  Be With It acknowledges pain, but also acknowledges that we have as much power as the pain—it does not need to rule. I can float with it, and then keep floating on.

In a different context, as soon as I started to write the first draft of my wrestly moment  I felt an overwhelming surge of GOYA (Get Over Yourself Already!).  Like, who am I to even talk about any of this? I AM A MESS. A mess with cute shoes, but a mess.

But—maybe my mess can help someone. If I succumb to GOYA syndrome or Impostor Syndrome or any of the other things that make me want to be quiet and shut down, the match is over. I can’t be fake.  My authentic is kind of messy (um, totally messy. Hoarders episode messy).  My constant commentary with God has a lot of "Lord, what the heck am I supposed to be doing? I want to do what you want me to do…"

And while no giant hand has appeared writing on my wall (phew, that would be terrifying), ideas and thoughts holler WRITE US. So…yeah.

I am going to be with my discomfort and not let fear of vulnerability win. I am not going to Get Over It (whatever it is) and write sunshine without acknowledging the rain. I am blessed with a lot of sun, but I only know it because of all the years of intermittent cloudfest.  I am not going to let my GOYA force me into silence. If nothing else, I know that is NOT what I am supposed to do.

In my next moment of figurative lake muck, I am going to try to use the tools I have to acknowledge the moment and keep moving. I will let you know how it goes. Until then—let’s keep movin’ right along, through the questions, with the questions, and hopefully into a sunny place of zen. 

                                   and until then--I will dream of coffee, morning prayer, 

                                  and yoga by the side of Lake George in summer. Happiness. 

                                                      

Zen and Stepping Away

The past few weeks have simultaneously renewed and decimated my faith in humanity, even with folks I personally know.  Not surprisingly, this weird dichotomy has not been a real Zen-builder. But it has brought home to me the idea that sometimes the best way to preserve zen in relationships is to step away.

Not RUN AWAY! RUN AWAY! Ala Monty Python, more Homer Simpson fading back into the bushes kind of stepping away.

I know, I know that Reverend Mother in The Sound of Music says “you can’t run away from your problems! You have to face them!”  And please, this year has been about facing my fears, doing the thing, etc. Sometimes, though, the best way to face something is to step away.

People matter. Relationships matter. Humanity and dignity and respect all matter. Witnessing the love and support that have surrounded our friends Levi, Tommy, and Mason in the last week has been such a Zen builder, because this love and support reinforces the paramount importance and gift of our shared humanity.  My love grows when I see other people acting on all the gifts of love.

borrowed from the internet, because yes. 

Witnessing so many of my friends own their truths about painful experiences they have had—this is a painful Zen builder, because truth ultimately does lead to peace, albeit sometimes by a circuitous route. Courage and standing in truth also reinforce the paramount importance and gift of the dignity inherent in every human being. My courage and sense of truth grow when I see other people standing in their truth.

this seems appropriate

Witnessing some of the really hideous, uncaring, and hateful things people have said in this past week has been like a gut-punch to my Zen.  And as I sit by my computer or phone, holding my stomach and saying OW in dismay at what some friends are publically saying, as I feel my peace and respect being eroded with each post I scroll through, I realize it is ok to step away.

One of the prayers of my childhood ended  with “I firmly resolve, with the help of your (God’s) grace, to sin no more and to avoid the near occasion of sin”.  Sometimes avoiding conversations/situations/arguments is the right call to preserve the good I am trying to foster.  I can’t control what other people say or do or think—I can only control me. Unless Cadbury is involved, then any sense of control is off the table (and likely into my mouth).

 If I want to be a better person, I need to stand up for what’s right—and standing up is much more effective in person. The veil provided by social media, the space a keyboard creates seem to foment an environment in which friendships are destroyed as fast as fingers can type. So much about the discourse I have seen hacks away at compassion, relationships, humanity, dignity, respect. Disagreeing is one thing. Respectfully stating different opinions is healthy…but somehow these practices seem to have fallen by the wayside in an increasingly shrill discourse that fills the interwebs at a terrifying rate. The ability to spew something out and have 500 people instantly see it is not necessarily an advance for society.  

Relationships are important. I’m not a spring chicken, making friends is hard at my age!  I want to keep my friendships. I am trying (with way little success so far) to create blocks of social media free time during the day. I find this challenging because the course I am teaching is online (ie computer is always on) and I keep obsessively checking on our friends who are sick—for those moments, social media is the most positive of game changers.  And ok, Candy Crush. But three clicks into Facebook or even news articles and I get sucked into the ugly, and then I can’t focus on anything.  

Facebook has this wonderful newish feature called “snooze”—where for 30 days you simply don’t see a person’s posts in your feed. You are still friends, you are just avoiding the tsunami of ugh that maybe they are generating. You can avoid losing respect for people who you know in a face to face conversation might say very different things than they say when empowered by the veil and space of internet ranting. You can avoid the near occasion of yikes.

The effect on my own peace of mind is almost instantaneous. 

Like this kind of peace of mind.

It is ok to disengage--a therapist once told us this when Dave and I needed advice on some stuff with one of our children. It is ok to walk away. Many times THAT is the better choice.

Stay informed-yes. Know what is going on, absolutely. Get sucked into an internal maelstrom or internet fight when someone types or shares something so obnoxious that you stew about it all day….yeah no. There’s Zero Zen in that.

Sometimes the real zen is in stepping away, in continuing to love and respect from a safe distance WITHOUT engaging in destructive rhetoric that ultimately gets NOWHERE (much like we were counseled to deal with our child). Sometimes the real zen lies in holding onto what we know is true and right and being living  lights of those things – lights that will  hopefully will illumine the way back to healthy friendship again.

That’s my hope. Even though it sounds like a Velveeta Fest of Extreme Cheese—that is my hope. So—I’m here. Trying to hold on to what I know is true and good, trying to feed my soul with all the good I DO see people doing each day, and hoping that soon we will collectively remember that we truly are all in this life together, let’s not waste it in ugh.

And don't be alarmed if you hear the crunch of Cadbury coming from the hydrangeas... ;) 

One of the prayers of my childhood ended  with “I firmly resolve, with the help of your (God’s) grace, to sin no more and to avoid the near occasion of sin”.  Sometimes avoiding conversations/situations/arguments is the right call to preserve the good I am trying to foster.  I can’t control what other people say or do or think—I can only control me. Unless Cadbury is involved, then any sense of control is off the table (and likely into my mouth).

 If I want to be a better person, I need to stand up for what’s right—that standing up is much more effective in person. The veil provided by social media, the space a keyboard creates seem to foment an environment in which friendships are destroyed as fast as fingers can type. Everything about the discourse I have seen hacks away at compassion, relationships, humanity, dignity, respect. Disagreeing is one thing. Respectfully stating different opinions is healthy…but somehow these practices seem to have fallen by the wayside in an increasingly shrill discourse that fills the interwebs at a terrifying rate. The ability to spew something out and have 500 people instantly see it is not necessarily an advance for society.  

Relationships are important. I’m not a spring chicken, making friends is hard at my age! J I want to keep my friendships. I am trying (with way little success so far) to create blocks of social media free time during the day. I find this challenging because the course I am teaching is online (ie computer is always on) and I keep obsessively checking on our friends who are sick—for those moments, social media is the most positive of game changers.  And ok, Candy Crush. But three clicks into Facebook or even news articles and I get sucked into the ugly, and then I can’t focus on anything.  

Facebook has this wonderful newish feature called “snooze”—where for 30 days you simply don’t see a person’s posts in your feed. You are still friends, you are just avoiding the tsunami of ugh that maybe they are generating. You can avoid losing respect for people who you know in a face to face conversation might say very different things than they say when empowered by the veil and space of internet ranting. You can avoid the near occasion of yikes.

The effect on my own peace of mind is almost instantaneous.

It is ok to disengage (a therapist once told us this when Dave and I needed advice on some stuff with one of our children). It is ok to walk away. Many times THAT is the better choice.

Stay informed-yes. Know what is going on, absolutely. Get sucked into someone saying something so obnoxious that you stew about it all day (while quite likely THEY have gone on to play Candy Crush or something)….yeah no. There’s Zero Zen in that.

Sometimes the real zen is in stepping away, in continuing to love and respect from a safe distance WITHOUT engaging in destructive rhetoric that ultimately gets NOWHERE (much like we were counseled to deal with our child). Sometimes the real zen lies in holding onto what we know is true and right and being living  lights of those things – lights that will  hopefully will illumine the way back to healthy friendship again.

That’s my hope. Even though it sounds like a Velveeta Fest of Extreme Cheese—that is my hope. So—I’m here. Trying to hold on to what I know is true and good, trying to feed my soul with all the good I DO see people doing each day, and hoping that soon we will collectively remember that we truly are all in this life together, let’s not waste it in ugh.

Zen and the Slow Leak

My New Year’s Resolution sprung a slow leak that morphed into a gaping hole.

Ok, so in Australia it is Friday…but not last Friday. Nor is it Tuesday. Blog Fail warning horns are blaring everywhere here. Each day I have written BLOG in my bullet journal in increasingly larger letters. Today the word is about an inch high. And fancy.

Even now, I am forcing myself to write—mostly because the alternative is “grade history midterms”. Procrastination priorities are in order, at least…

One of the things I have come to realize is that I have a very limited emotional/mental gas tank. I work really hard to try and keep it full, or at least full-ish. For me, that refilling is a work, it doesn’t just happen. But there are things that put a slow leak to gaping hole kind of kibosh on my tank.

Last week was hospital week. Reports were good. Things are stable. I am grateful.

And yet those days take every bit of mental/emotional energy reserve I have.

I figured Wednesday/Thursday appointments, I’ll be golden to write Friday, heck, I can use my time at the hospital to write!

Silly rabbit, Trix are for kids. There is no concentrating at the hospital when you are holding a TGI Friday’s style beeper thing waiting for your child to come out of sedation. There is CERTAINLY no concentration when the time gets long, and then the hospital CALLS YOU ON YOUR CELL PHONE while your child is in the scanner, because your TGI Friday’s beeper didn’t work. Yikes. There is no concentration when you wait several hours past your appointment time to view the scans with a pediatric neuro-oncologist. I pulled out my school papers, looked at them, and put them back in my bag. I just had nothing left to use to think about that. 8+ hours total driving time over two days…car time left no mental room for metacognition. I just can’t concentrate on anything beyond National Geographic or looking out the window/praying for the WaWa coffee cart people to come.

Hospital stuff is just a keep on going kind of moment. I wish that this many years into it I could be less frozen by these days. I am less psycho about them than I used to be, but they still freeze me solid.  In the days after these hospital visits I had to set up the SAME series of appointments for another kid…more chillin’ in the quagmire…but it’s done.

Now that I understand how my brain works, I can plan for it, at least somewhat—but I can’t seem to find a way around that resource suck of hospital days/appointment making/planning/processing—and tackling things I dread. I made some appointments for myself in the last week—gave myself a gold star…and then went and sorted papers kind of mindlessly while listening to Daily Show clips on YouTube. That kind of task is a mental resource suck, too. I just can’t find a way around it.

I just have to make peace with it, and try to keep moving.

So in Australia it’s Friday already—I should be continuing to write about the Happiness Project, and I will get back to that. One of the valuable lessons of that book is to let yourself BE YOURSELF. It’s ok to be who you are, you will find more happiness in NOT trying to force yourself to be something you are not. Being Kristin means acknowledging that I have to regroup after challenging days.  I can’t just breeze through things. And that’s ok. Even when it doesn’t feel ok—that IS ok.  Being Kristin means I hate making phone calls and I have to bribe myself to do it. That’s ok. Being Kristin means even if we are running low on data, I might need to stream some Sia in the car to remind myself I’m unstoppable. That even on these days where I seem stopped, I really am only “like, totally paused”. ;) 

Just keep movin’ right along. If I miss a day, the internet won’t break.

But now, I really do have to go grade those midterms. Or eat lunch.  Hm….wonder which option will win?

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.

Miracles Remix

Miracles Remix

Today’s Gospel at our Church was the story of Jesus healing the blind man—this story always grossed me out a little (spit and mud? Ew), but at the same time moved me, especially once I had a child who was going blind day by day in front of me.  As the deacon spoke during his homily today, my mind wandered back to when G’s vision was failing at a rapid pace.  Back then, if Jesus had offered some spit and mud for G’s eyes, we would have added that to the chemo regimen and showed the Pharisees some Jersey style onco-mom attitude if they had a problem with G getting healed on the Sabbath.

You wanna piece of ME?

Obviously, that did not happen.

But still—G’s vision improved. We aren’t sure why. Anecdotally, I think it had to do with changing chemos. Her tumors never got smaller after that first chemo fail, or the second chemo fail, or the third chemo stability/bone marrow burn out.  But her vision improved.

We gave BACK the Brailler.

A Brailler. G used to cheat and look at the dots to read things.

The only time I ever celebrated cheating. ;)

That was a miracle.

It wasn’t the miracle we prayed for. It wasn’t a clear cut miracle of complete healing or woohoo. But the day G told me she could see stars… “ you know, those tiny white things!”…that was a miracle.

She still has no peripheral vision in any direction. Her left eye still is weak (to her sense, she can’t see out of it, but she actually can). Within a narrow field of her right eye, she is correctable to 20/30. That is a miracle, based on the “counting fingers” report of 2004.

Making peace with miracles remixed is an ongoing work.  We’ve had other Miracle Remix kinds of days—March of ’06, when we found out the weird tumor thing G had going on after 18 months of chemo had NOT become stage four gliomatosis cerebri (a game changer, prognosis wise). We got to restart chemo #3. That was a miracle. The next 6 months AFTER that miracle day were brutal (Transfusionfest 2006, neutropenia-induced hospitalization, allergy to one of the chemo drugs), but it WAS a miracle.

My girls, with neurosurgeon Dr. Storm (the only guy

allowed in G's brain) and Research

genius Dr. Resnick(and his daughter), at Camp Sunshine.

Miracle Monday, 2012 – the day we found out the Avastin/Irinotecan/Temodar mix had dramatically reduced the tumor mass that had explosive growth while G was on the clinical trial.  I literally almost unraveled that day. That was a LEGIT miracle, we had never seen that kind of shrinkage EVER. We got to do nearly another year of that chemo, and it kept working (and has continued, after the fact to keep G’s tumors stable). Miracles.

Scientific progress—miraculous. Inspired. Fought for. I will take any kind of miracle that comes, even if it is ultimately in IV form in a day hospital, or in the skilled hands of a neurosurgeon. 

For me, one miracle--being able to talk to God again without using colorful language. And I don't mean red, orange, yellow, green, blue, purple. Or chartreuse. THAT was a different kind of healing miracle. Not the one I prayed for, but a gift that helped me keep on going in the face of extreme medical yikes back in '05 and '06.

yeah, not so much. I had no issue with

Jesus, just God. This is why I don't teach theology.

That guy with the muddy and healed eyeballs? He was grateful.

I am grateful.

Not going to lie, I would be totally cool with the complete healing kind of miracle. That just isn’t the kind we are going to get, and I have made peace with that, really.

But I do wonder, some days, if I am doing enough with the miracle of time we have been given.  Having more time is truly the greatest miracle of all.

As I type this, G is pondering what classes she should take at Community College (“Mom, what is “Aperture in Photography?”).

Time is the greatest miracle.

I don’t want to waste it.

Broken but Unbowed

Humpty Dumpty Sat on a Wall
Humpty Dumpty had a great fall.

All the king’s horses and all the king’s men

Couldn’t put Humpty Dumpty back together again.



But really, would you ask a horse to fix something you broke? Does that seem reasonable in any set of circumstances? I mean, they don’t even have fingers, just hooves.

Pondering broken things today.

I don’t like broken things. Who does? Well, with the exception of piñatas. Those are more fun broken…although an argument could be made that piñatas are even nicer when they are intact, all colorful and papery and full of the promise of delights. Sometimes when you break one you realize that there’s only a bargain candy mix inside, full of generic brand hard candy and stale tootsie rolls. Ew.

This week we’ve faced a few broken things here, some big, some small, and I’m left wondering how one fixes the unfixable—or really, how do you make peace with the unfixable?

This isn’t really a rhetorical question.

In taking down our Christmas tree, one of my favorite ornaments got broken, the only real ornament disaster we had this year, aside from the $1 craft store sculpey Santa that the dog ate…and the Rutgers R I had made for my spouse one year (also eaten by the dog) . The ornament that broke was a Chilean nativity, a tiny clay ornament that crashed down when one of my children barreled past the tree while we were un-Christmasafying things.

yeah, no roof for His head is right. Meh.

 

Of course I peacefully said, “that is ok, child, do not worry about breaking one of mommy’s very special nativity collection ornaments”. Of course that is what I said.

Excuse me one moment while I find a fire extinguisher to put out my flaming trousers. Ahem.

I know I can probably super glue it. Maybe. I will try, but it makes me so sad to see the little pieces all over. Definitely NOT calling a king’s horse for this one.

Over the last few weeks and months I have also realized (again) that trust, once broken, is nearly impossible to repair, especially if the breaker of trust doesn’t seem to give a flying wahoozie about making amends. This weighs quite heavily on me these days, because in some cases this realization carries a weight of personal responsibility on its broken back. I can’t quite figure out how to make peace with this—as much as I am a snarky cynic, I do trust people, or I want to, and then smackaroni and cheese ends up all over my trusting expectations. Sigh.

And when I have a responsibility for the way someone knows how to act, it is heartbreaking when trust is broken and broken and broken again and again. How do you even begin to make peace with what you cannot fix?

And finally, in our scary horror film parallel universe, the Desperate Valley of Onco-land, we learned again this week that brain tumors cause damage. NEWSFLASH! Ok, to clarify, when tumors grow catastrophically after years of stability, they can still find new parts of the brain to hurt. Still…NEWSFLASH?



When you are in crisis mode, ie Stop the Tumors From Growing! mode, other issues kind of fade to the background. It is only in the relative quiet of stability-in-progress that these issues have room to hiss at us.

Many parts of the brain, once broken, can’t be fixed.

This is a sobering reality, one that sinks in during the hours AFTER the initial meetings full of reports and bell curves and diagrams and percentiles and doctors soberly saying things like "this can't really be compensated for", meetings that follow other meetings where the delicate balance of brain chemistry is always at the forefront of discussion.


The report is intimidating even before it comes out of the envelope. Double meh.

There are strategies, and techniques, and certain things that can help address the broken parts, but some things just can’t be compensated for--as per sober doctor in super cool tweed suit.

That thud you heard was me getting smacked upside the head by reality.

So yes, this is unfixable—but countering that reality in a cloud of neon animal print and an obsession with American Idol is the reality of a kid who is, without a doubt, “one tough cookie”. She isn’t defined by statistics or percentiles or reports or even by my fears. She is the fix to  her own unfixable, in a lot of ways.

The obstacles are real. The struggles ahead, no joke. But I have to try and draw some hope from the reality that my kid IS a tough cookie. She doesn’t need kings and their horses or men to get her through—what she NEEDS, I can try to give her (or advocate--er, nag, demand-- for other people to give her)—love, support, and some extra heavy duty reinforced wings for flying.

I may not be able to keep her from falling and falling as she tries to stay on the wall with her peers…but I can keep helping her back up, I can make the wall sturdier and wider. So much of what she faces is unfixable, and I have to make peace with that (again. Yes, again.) But unlike broken trust, or even a broken ornament, the unfixable here just leads to another path. We just have to figure out what that path is, what the best way is, and then try to ease on down the road with a song and some super glue.

Who knows, maybe once the king’s horses and men realized they couldn’t put Humpty Dumpty back together they just made a giant omelet or something. There is always a solution, even if it’s not the one anybody anticipated. I have to find hope in this.

Although now I’m a little bit craving an omelet…