Zen and the Restart

Happy 2019, all.

So…while math is not my first language, chronology is the language of my chosen profession—and I realize that this entry is in no way two or three days after my last entry. 

Oops.

I kept adding BLOG in increasingly urgent fonts to my bullet journal. I dug out my gold star stickers. And yet I could not write the words. 

What the heck happened?

Well—a few things happened. Thing #1: I started working more. Substitute teaching holds a set of challenges that keeps me on my toes until I get home and utterly collapse. As time has gone on and I have worked through most of the different schedule configurations and academic departments, I am starting to get more comfortable with what I have to do. Still, the drain on my mental and emotional energy is pretty profound—especially since as soon as the school day ends I am back on Chauffeur Duty for my daughters, whose schedules are extremely full. Staying awake past 9 has become a challenge!

I understand now why my mom has always been such an early to bed kind of lady.

I am profoundly grateful to be subbing, especially in such a great school where things are clean, organized, coherent (ie there are systems in place for any kind of situation or schedule that might arise) –for my anxiety-plagued brain, the ORDER in this school just makes me so happy. Both my mom and my mother in law have commented on how much happier I seem. I am grateful. This sort of busy just depleted my writing energy tank. 

Thing #2: Hospital Day. More accurately, hospital days, plural. Due to scheduling what-nots, we had to have my daughter’s MRI and neuro-oncology follow ups on different days, around her busy school schedule. The challenges of an evening MRI in Philadelphia, plus days in between, plus oh sh*t we are back in neuro-oncology (an out of body moment that happens every.single.time we find ourselves back in clinic)—all these things put my writing brain into severe overdraft mode. The scan was stable, really stable. There were some other things that had to be pondered/dealt with mentally acknowledged…and once again my brain couldn’t put together words. 

I am continually agog at this phenomenon, how going back into neuro-oncology world puts my brain into insta-survival mode. The mental muscle memory that kicks in as soon as we get on the road to Philly astounds me. If only I had that kind of muscle memory for things like roller skating or backbends…

Thing #3: aka The Big Thing: Enter a Crisis of Ideas. I finished reading New Seeds of Contemplation by Thomas Merton—I had been reading a chapter a day as part of my morning prayer/get set for the day time. This book blew my mind—for folks doing any kind of spiritual seeking, check it out. Anyway, the later chapters of this book broached the idea that we really can’t force zen (he didn’t say it like that, but that was the idea). We can’t structure or create inner peace, we have to get to a point of acceptance and surrender for zen to happen.  I am not saying this right—but basically, you can’t control freak your way to zen.

Hey now.

I like me an action plan. I want to DO THE THINGS AND BE ZEN. I SHOULD BE ABLE TO CONTROL ALL THE THINGS AND GET TO ZEN!

I want zen to be the first thing I can check off on my to-do list.

Not only that—not only can I not control freak my way to zen...there is no actual end point to zen. It’s not like I can do all the things and force my way to some Be all And End All of Zentastic Zenitude. I can’t just map a route to some magical place in the northwestern hills of New Jersey and be like Ha! Found you, zen!

Nope. Although note the skillful avoidance of 287 and Rt 80. No zen to be found on  those roads.

This is likely beyond ludicrously obvious, but my denial is industrial strength and honed by years of practice.

Years ago I used to proclaim that I thought running was silly because why would you run and not go ANYWHERE but back where you started? I could see running to Dunkin Donuts, or to get fries somewhere, but in a random circle? What the heck?

I hadn’t even thought of this in years until I started wrestling with my crisis of ideas. The zen quest is like running—you get a lot of benefit out of it, even if sometimes you don’t feel like you are actually GETTING anywhere. Progress is measured by a different rubric than a simple point A to point B hooray for fries kind of way.

In this wrestling I have found my task…er, focus for the new year. (How quickly I go right into Do It! mode …) How to reconcile the deep truth I see in this need to let go, the understanding that it is the trip that matters, the destination remains in flux…with the deep truth I see in myself, that I need to know/control/handle all the things. 

I am not sure I have figured it out. Rephrase, I KNOW I have not figured it out. Anyone who lives with me will assure you there has been zero figuring out. But I can no longer let my questions stop me from writing—I have to embrace the uncertainty and keep moving. In some ways, I think that is what Merton means. Similar ideas resurfaced in my subsequent re-read of Jacques Philippe’s Interior Freedom (another mind blowing read—on this second time through I took notes in the margins).  Freedom comes through letting go, not from holding tight. You get peace and THEN do the things, not do the things to get the peace.

HEY NOW.

As much as this idea initially rankled, (Elsa can keep her “Let it Go”)—I see its truth.

I can’t MAKE THE ZEN HAPPEN. But I can take steps to invite it in.  Brene Brown said it perfectly in this week’s “Dose of Daring” email—“The willingness to show up changes us. It makes us a little braver each time.”

I want to keep showing up in 2019.

I will keep movin’ right along.  I will try to move forward in letting go of resentments and embracing forgiveness as a PRACTICE.  I will try to use my life experiences to help other folks who are wading through the quagmire of yikes. I will keep Christmas all the year…ok, wait, wrong resolution. ;) 

I will share some more of the tools that have helped me—and honestly, will probably find myself wading through quaqmirish moments of my own (next hospital day is in about 5 weeks). But hey—2019 provides a fresh start on my search for zen—or at least my search for how I can let go and let zen in, while accepting that the work remains ongoing. 

Peace, all. And apologies if the Frozen soundtrack is now stuck in your head. ;)

Zen on the Run

Back in 2004, when we were making weekly trips to Philadelphia, leaving our house in the cold and dark of early morning, I remember looking out the window of the car as we drove past the Delaware near Lambertville, and seeing the people running along the canal towpath.  Running and running. I so wanted to run, just run away from the nightmare we were living in—something about the act of physically running seemed so cathartic.

But I hate running, and back then I had a 6 year old fighting brain tumors and a 2 year old who wanted Mommy extra since things were so disrupted in our home and a 9 year old who was imploding.

Running wasn’t going to happen.

(I marvel at moms of young kids who get out there and run. If I got out for a walk when my kids were young I counted the day a major win and started imagining Olympic Glory as a walker).

Still, some part of my brain understood that there was freedom in movement, in running along near a river.

In 2006, one of the lowest points of my daughter’s illness, my husband realized that he seriously had to lose weight and get in shape, so as soon as we got home from my daughter’s Make a Wish trip he started running. 

Twelve years and countless half marathons, 5ks, and one full marathon later, Dave has not stopped running. He runs in rain and snow and gloom of night, he really should work for the postal service, nobody would ever miss their mail delivery if he took over.

While I use words galore to try and dig through the challenges of our life, Dave runs. And runs. And runs. For Dave, running equals zen. Always.

After cheering him on at a few races, and walking a few charity 5ks with the kids, I decided it was time. My G was off treatment. My 2 year old was in kindergarten.  My 9 year old was now an adolescent (so I NEEDED TO RUN).  My excuses were weak, but my desperate need to physically process the new moment of Life Off Treatment  remained strong.

 (Yes, off treatment should be awesome, but like Maria Von Trapp says in Sound of Music, “It could be so exciting, To be out in the world, To be free! My heart should be wildly rejoicing. Oh, what's the matter with me?”).  Not seeing medical professionals all the time was super unsettling, especially since the tumors were no smaller than when we started treatment.

Anyway, I dug out a pair of sweatpants and some old sneakers, and snuck up to the high school ball fields behind my house—and I tentatively galumphed around the soggy field. I didn’t even tell Dave for weeks that I was trying to start running, I was SO SELF CONSCIOUS. After all, I was always in the slow group for gym class, and once wore a paper bag over my head in protest…after college I would eat chips while one of my roommates vigorously did Jane Fonda videos. Ms. Fitness I am not.

But—it felt good. Not the running, that felt horrible, but moving, breathing fresh air, hearing the birds…it was good.

And thus it began.

Eventually I got actual exercise clothes, and real running shoes, and I ventured onto a road. I got a Road ID (hello, so many landscape trucks on such skinny roads!) and a headband that would stay in and a little handheld water bottle thingie.  After a few years I stopped always putting running in air quotes when I told people about my upcoming races.

Most of my running has been to fundraise for research for a cure, or to support friends who are sponsoring races to fundraise for research for a cure for NF or brain tumors or other smites.  I still don’t love it. I need MAJOR motivation to get up and go.  I only run slightly faster than global warming occurs. Officially, I run/walk--aka the Galloway Method (I love me a method). 

I only signed up for my first half marathon, having never run more than 4 miles, because my G had an MRI that looked like we’d be starting chemo again.  I was so angry I signed up for a race in defiance, like @#*&@^# you, NF! That actually was my training mantra (not kidding).  A week before the race a follow up MRI showed the tumors had stabilized and we had a reprieve.  That was awesome, but I still had to go run 13.1 miles!!

That 13.1 hurt. A lot. But crossing that finish line and NOT throwing up or collapsing was the most empowering thing I ever did. I beat my own doubts, insecurities, and memories of high school gym class. I DID THE THING. Not fast—but I did it. I got a medal and a t-shirt and EVERYTHING. I . Did. It.

And that kind of personal win IS a shimmering ZenFest.

So I did it four more times.  And honestly, by the last time it didn’t hurt more than it should have.

As of the last time—2016, when our family ran with my dad for his 70^th birthday-- I officially retired from half marathons.  The training exacerbates my anxiety—thus undoing the zen of movement. But this past weekend I ran a 5k with my now almost 16 year old—the 2 year old who needed mom all those years ago. Neither of us had trained, she relied on youth and I relied on all the other exercise I do, and both of us relied on the promise of chocolate at the end of the 3.1 miles…and it was good.  The threatened snow/rain held off, and I gave her my marshmallows while we waited for Dave to finish the 15k.

It was good.

For me, running isn’t a quick fix for zen like it is for my husband, but getting outside and moving, even to walk, to notice nature—that’s really the benefit of running for me. Running forces me into present moment awareness in a way few other things do.  Races ARE zen for me because of the Camaraderie of the Slow – My People! Everyone chugs along. Everyone supports everyone else. THAT is zen.

Movement helped me.  I know not everyone can run. When it’s cold out, I don’t run—but I have found that even being outside to meander with my snoofly dog helps with zen.  And honestly, in the cold months I use different kinds of movement to help with zen (another post).

I hear that spring may FINALLY be coming to Jersey—and maybe I can head out to my favorite nature preserve on a Saturday morning and run/walk slowly through the flowering trees and around the many ponds.  And after a run, I found the perfect zen chaser…

But that one I am saving for next post. ;)

Baby Steps

So, I have returned.

Thank you to all who were so encouraging last week about my return to wordsplosionness. I do appreciate it more than you know. Seriously. Thank you.

And I have learned, in the last week, that as soon as you decide to Let Go of the things that bring you to constant yikes, those things SWARM like locusts upon thy house.  We had locusts in Jersey this summer. Nasty, nasty, nasty. Thank God our house is in a former corn field, 17 years ago there were few trees here for locusts…but we know by the end of the locust fest they did find our yard.

Note to self, move from this location before 2030.

Anyway, yes. I have been trying and trying to keep SAYING my non-resolution resolutions, just to remind me (and sadly, anyone within earshot) what I am trying to do. Be creative. Be with the people I love. Don’t get sucked into stupid. Breathe. Appreciate each moment.

So this has been a week of baby steps, and not just because it was super icy and walking the dog was somewhat like waterskiing.

But I have had a few little moments, and in an attempt to not just sink back under the swampy whatnot, here they are.

I have run just over 6 miles this year! Yay! And it’s still January!

(ahem. Normally I can’t say that until June. ;)  )  I know that whatever I decide in terms of running this year, whether I go for ½ marathon #4 or not, I will be WAY more peaceful about it if I try to keep up at least a 5k a week. I won’t have that despairing feeling of “aaaagh, I need to start again!”.  If I can keep up 3-6 miles a week, when I have to start adding distance in the late spring /early summer it will still stink (realities, people), BUT I will have eliminated the first and extremely daunting mental hurdle.

I tried a new recipe last night, a breaded pork chops with a creamy sauce that I found on All Recipes and tweaked for my family’s taste (ie no cream of mushroom soup) .

 I think my spouse may have licked the casserole dish clean when I wasn’t looking (because he knows I rebuke him if I catch him doing that). My picky girls liked it. The teen son inhaled some and went back to Xbox, I figure that means he liked it. Even the dog liked the speck we gave her, but she eats poop, so her vote doesn’t really count. But this one was a tasty little moment, and I felt good about taking the few minutes to look up something new.

  I signed up for Pinterest.

I know, how could I NOT have already done this? I guess I was intimidated by my impressions of Martha Stewart-esque creativity I can’t even get organized enough to look at, let alone replicate. And I know  myself too well, adding a way to waste more time is likely not a good idea for me. BUT I am thinking that if we avoid disaster in the next few months (truth alert: kind of terrified about the next few months) we will have a Big Birthday To Celebrate here, a Big Birthday that falls a month before a Big Survivorship Date.  I am afraid to even speak that, I know how quickly things can change. But I am trying not to live in the fear that is our constant companion here, I am trying to hope. And in this case, hope means pinning pink animal print sparkle party ideas. Did you know you can just put festive duck tape over a water bottle label and then your party bucket of water bottles looks super festive??  J

In the same vein, I applied for an Icing Smiles cake for this Big Day. I was reluctant and afraid to do this, but then decided to just do it. Baby steps.

As a side note, I have always been very Sweet 16 is overrated, making an extravagant HoodlieHoo about it is just silly. But in onco land, EVERY FREAKING BIRTHDAY NEEDS AN EXTRAVAGANT HOODLIEHOO, and for whatever reason (maybe because Scan Days Cometh?) I am just embracing that this year in a different way.

I have made a few specific attempts to not plummet into crazy psycho lady at the drop of a hat.

Yeah, it isn’t all glowing cotton candy and sparkly DIY photo booths here. I am trying and trying to be more patient, to breathe before responding, to just let stupid go. I know some discussions are NOT helped by facts, so really, stepping away is just healthier. I know my G can’t help freaking out about schoolwork,  I just need to breathe and have her read the 9 pages of English textbook out loud so I can explain things to her as she goes along (thank God I teach US I, that’s really helpful for G’s American Lit class).  I am trying (try. ing. ) to stay peaceful with the more sluglike attributes of a college student on winter break in my house. (ok, WAY still working on that).

This morning we had an unexpected day off from school due to the ridiculous wind chill, and my girls came into my room (I saw zero reason to get out of bed early) and my G sat on the end of the bed, and R curled up beside me so she could reach the dog curled up by my leg (no. we do not let our dog on the bed. Never. Um, nope. Not at all. *from Chapter 3 of Oh How the Mighty Have Fallen for this Furball). I realized how pretty G looked in her pink pjs (the child can wear ANY color), and how lucky I was to have such a sweetie as my R who wants to come curl up by mom still… 

It is a work, being positive. But geez, the dividends are pretty awesome.

 

And p.s. wrote a blog entry (however anemic) within a month of the first “hey I am going to blog again” entry. Win! ;) 

Need for Speed

This the text of what I said (um, read) at our Coffeehouse for a Cure to benefit the NF Endurance Team last night...sans weird ad libbing and the random "ding...dong" sound that came out of nowhere halfway through...



I am fast at a lot of things.
My students (and most of humanity) can attest to the fact that I talk really, really fast.

I can polish off a bag of Cadbury Mini-Eggs lightning fast.

Give me a word or situation and I will burst into an obscure show tune or commercial of the 80s or odd protest music from the 60s Super Fast!

I can spend $100 at Target alarmingly fast.

Make a mess in any part of my house? Fast.

Misplace my shoes? Crazy fast.

Lose my temper? Yeah, too fast.

I type uber-fast, and read crazy fast, and get through Costco on a milk/cheese/eggs
run scary fast.

So there’s a lot of things I do insanely fast. I like fast. Fast is how I roll.

But ironically, in light of what our Coffeehouse is about, there’s one thing I am embarrassingly slow at.

Running.

I am a pathetically slow runner.

Global warming happens faster than I complete a 5k. People on jazzy scooters pass me when I run. I go out for a mile jog and I have to make sure nobody sends out a search party for me when night falls and I have not returned.
I am really, really slow.

And honestly, I kind of hate running. I hate the way I look in running clothes –to quote a friend, “spandex is a privilege, not a right”, I hate the funky smell that follows any kind of running, I hate the feeling of having run 87 miles and then seeing a measly ½ mile marker. I am fluent in Whinese when it comes to running. I am REALLY fast at making up annoying little songs about running…running running is annoying/running is the thing I loathe…moving quickly getting stinky wearing stupid spandex clothes!

See?

So why the heck do I keep running? I mean, there are a lot of things in life I’ve made peace with stinking at. I simply don’t DO those things anymore, and the world is a better place. I will never be a great Ukrainian Dancer…or Scottish Dancer…or Hebrew Dancer…or Irish step Dancer—and that is truly ok. I will never be a champion in any sport that involves being outside in the cold (I like having feeling in my extremities, once I lose that things literally go downhill). I get full fast (add that to the fast list) so I will never be a competitive eater. One hotdog is fine for me. I am perfectly ok with NOT doing these things.

I’m probably NOT going to grow up to be Aretha Franklin either…that I’m less peaceful about. But I digress…

… why the heck do I keep running when I am slow, and awkward, and really have not earned the privilege of wearing spandex?

It’s pretty simple, really. In fact, it would make a great t-shirt…

I run for a reason.

I run for a lot of reasons, really. My reasons include, but are not limited to, Dave, Genna, Rosie, MJ, Emma & Amie, Gabbie & Ori & David, Maddie, Ann, Siobhan, Jennifer & Patrick, Jaxon, Meadow, Ryan, Jenna with a J, Preston, Jerry, Katsie and Carly and Genna’s new friend Tommy and Drew and Joey and Nora and our beloved Sandra.

Frankly, I think my reasons to run are better than my reasons NOT to.

Still, I am only able to run because of the NF Endurance Team…and not just because they gave me a snazzy neon singlet to wear with my ill advised spandex. Being with the team has shown me that the ability to do this is IN ME. I can do it, because the first rule of the NF Endurance Team is that we never run alone. There is a community of runners and supporters all over the country, all running for the same goal.

There’s crazy power in that.

It’s an odd thing, the NF Endurance Team. A few minutes with the families and friends and organizers of the team and you just WANT to get out and run. I can’t explain it. Even I felt that, and really, I am the Poster Gal for Sedentary is Super!

This team is just that amazing; the runners are just that inspiring; this cause is just that important; this reason to run, a cure for Neurofibromatosis, is just too compelling to ignore.

Standing on the sidelines at the Philly Rock n’ Roll ½ marathon in September, seeing over 100 runners with “NF” on their singlets running collectively for all our our loved ones…there is CRAZY power in that.

I will never be an ultramarathoner like my brother, who is once again running the Leadville 100 mile trail run in August for the Team. I may never actually get through a ½ marathon like my sister, Emily, is going to do in Seattle this spring. I may not even actually join Dave except as a cheering squad leader in Philly at the ½ in September. But my 4.5 miles at the Jersey Shore Relay are the way I can oh so slowly do something proactive for my family in the face of NF.

I may be slower than beach erosion in Point Pleasant where I’ll be running—in the broadest sense of the word-- on April 16, but I run for a reason.

You can too. Even if you are slow. Even if you hate moving fast. Even if spandex is not an inalienable right for you either. Come be slow with me. You won’t regret it.

There’s a famous quote by the runner Dean Karnazes that keeps me going when I’m training or when I’m discouraged in our long trek with NF. Run when you can; walk when you have to; crawl if you must, just never give up.

My girls face a marathon every day. Their battle with NF is involuntary and unending, and the fact is, we really don’t know what kind of roadblocks we are going to face in the future. This past year was a tough one. We faced the real prospect of restarting chemotherapy with Genna. Rosie started having hearing issues related to her tumor. To try to encapsulate the fear and despair and helplessness of the second half of 2010 in those 3 sentences is almost ludicrous. 2010 was a tough year. And in the last week alone, two of our dear friends in the NF community got really bad news…two children at a crossroads, again…
What more reason do I need to run?

So with NF Endurance I run against NF. I run for my children and my spouse and my friends and their kids. I run for a reason… and for that reason, I will Run when I can, walk when I have to, crawl if I must: but I will never give up. And I thank you for joining us in this race. Thank you.

Now the remnant of our old Smile Crew is going to sing…a song about being there for each other, a song, as always, dedicated to Sandra Blumberg, who showed us with endurance with a smile was all about….

Folly and the Secret Weapon

In mental battles with myself, I tend to lose.

Be it “don’t eat that cookie” or “really, clean the bathtub already”, or “have you ever noticed you’re shaped like a pyramid? Or a Thomas’ English muffin…’bigger on the bottom/smaller on the top’”, I invariably succumb to the battle inside.

Somehow I thought I would outgrow this. Somehow I imagined that after the Fest o’ Insecurity that was my teen/college years I would emerge as a confident, outgoing, accomplished person.

I’m not sure why I thought I would stop being ME, but I kind of hoped it would happen.

A lot of years have gone by since the Fest, and it’s hard to pinpoint whether the things I hoped to do and haven’t are because of circumstances in my life (an easy culprit), or because of Me. Most likely it’s a mix of both.

I have come to see that MOST things in life are a mix. Most things are not black/white, good/bad. Everything is complicated. Except Cadbury mini-eggs. But those can’t really be quantified as a Life Issue.

I found an old diary of mine the other day. I was a little alarmed (and kind of amused) to see the extremes of my teen years spelled out in loopy script. Some entries were funny (I refused to call my first diary a diary, it seemed pretentious, so I referred to it as Book), some were sad (my friend’s little brother died in a freak accident) and some were just …teenish (apparently I have been perfecting Neurotic over a LOT of years). But everything was passionate...even if I did see most things as all the way right, or all the way wrong.

So here, at the brink of Officially Grown Up (only one year left), I have to pick a battle and win it. I just do. Circumstances didn’t kill my passion, they just redirected it. And I am ready to go. Ish.

Maybe I didn’t choose my battle so wisely. Maybe I should have found a crafty or academic kind of mountain to climb…no, I decided on Kilimanjaro. This Saturday, I am going to run the middle section of the Jersey Shore Relay Marathon.

Granted, my great contribution is a measly 4.2 miles. A neighbor who is a hard core runner needs a training run for her next half marathon, so she will do the first 11 miles, and my spouse, also a hard core runner, will do the final 11. I figure they can both go get pedicures or something in the l-o-n-g time it will take me to get down the middle of the oceanfront race course.

It seemed like such a good idea at the time…but then my mental battle began. We only registered a week ago, and the race is SATURDAY. Like, the DAY AFTER TOMORROW!!! YIKES!

I’m not a runner. I have plaguing knee issues, and I am utterly self conscious about how I galumph along (it ain’t pretty). Especially in sports clothing, my physique is, um, Giza-like. I hate how funky you get after running (nasty). I can’t stand how you can run for what seems like an eternity and then realize you’ve gone half a mile. What is that about? I run at glacier speed…seriously, global warming happens faster than I complete a 5K. And now I know it’s supposed to be only 58 degrees and maybe raining on Saturday, which only adds to my misery.

But I do have a secret weapon against the voices in my head that form a continuous refrain of “are you NUTS???”…I have something I hope can carry me through the moments on the course when I don’t feel like I can go farther.

Genna. Rosie. Dave. Sandra. Nora. Gabbie. Drew. Joey. Ann. Siobhan. Emma. Katsie. Julia. Gigi. Arianna. Aidan. Meadow. Ryan. Jenna. Ashley.

The names are my secret weapon.
We are running as part of the NF Endurance Team. http://nfendurance.com

In training today I tried a new system, a run/walk thing that helped my knee and improved my speed by nearly 45 seconds a mile. I only used music, not tv (I run on a treadmill). And when things got hard, I spoke the names…

And you know what? Maybe I DO look like a pyramid with legs. Maybe the IT band brace does make my leg look like an albino sausage. Maybe I am uber-caucasion, sort of a slow motion White Shadow careening along like the Tin Man without his oil. Maybe I am.

So…Flipping…what?

Just say the names.

This is one mental battle I refuse to lose.

If it does rain, I will wear a silly SpongeBob hat in honor of our friend Sandy…rain or shine my girls’ faces will be on my shirt…and the names of our friends battling NF. And I will use my Secret Weapon early and often...

Just say the names.

Who knows? Maybe this little 4.2 miles will give me the boost to attempt Everest in September, the Philly Distance Run, a half marathon with hills and everything. We’ll see…anyone wanna be a running buddy?

Regardless of the future, I am determined to win this skirmish against myself…and show my girls that momma’s actions can be louder than the voices in her head.

I just can’t forget to pack myself some post-race mini-eggs…