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”).

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.

The Sparkly Unicorn Killed My Alarm Clock

Ok, that’s a lie.

My alarm clock was old, really, really old, like older than any student I have taught in the last 5 years. But I promised I would reference a sparkly unicorn this time around, and it makes for a Much Better Story if I say that the alarm clock was slain by a mighty Unicorn that shot sparkles from its horn.



Yeah, it LOOKS sweet. Watch out!

Right?

Go figure, I promise you a sparkly unicorn and the only one I come up with is a violent destroyer of innocent alarm clocks. Meh.*


But when I started the last post, I actually MEANT to talk about my broken alarm clock. I didn’t mean to alarm people, somehow the flash flood of yikes that accompanies post-scan day attempts at zen carried me well downstream of my initial point.

And THAT, my friends, is reality for many an onco/nf parent.

My alarm clock was a gift for my high school graduation. Remember, when I graduated from high school we didn’t have Target or Walmart, I figure my neighbors who got me the clock had to go down to Ye Olde Clocke Shoppe and ask a wizened old man to craft me a clock. Er, a clocke.

Ok, maybe that’s overstating things, but I know my neighbors put time and effort into finding this clock for me, because it has GIGANTIC NUMBERS. Exceedingly large numbers. Comically large digital numbers. My neighbors (who knew I am ridiculously near-sighted) thought it was hilarious, the funniest gift ever. I kind of thought it was awesome, as evidenced by the fact that I’ve had it (gulp) 23+ years.

Comically Large Clock next to regular travel clock. Yeah, um, it wasn't 12:12 when I took the picture. Sigh.

The funny thing is, in high school I NEVER used an alarm clock. Ever. My mom always woke us up. She is a crazy early riser, so she would just come tell us to get up at the right time and we would. I am a light sleeper, so…yeah. It worked.

I now have two children who require a cattle prod to remove from bed, (unless it is Saturday), I am daily flabbergasted by this.

Even now, if I have to get up crazy early for something, I set my alarm, but I ALWAYS wake up before it. On scan day I knew I had to be up by 4:35 a.m. I woke up at 4:30.

It’s awkward when THIS is your party trick, but hey, what can I say, my internal Stressometer is better than even my Comically Large Numbered clock.

I realized on our most recent scan day that my alarm clock (which had been freakishly blinking for a month or so, maybe trying to send out some kind of final Morse Code-ian message of farewell) would not let me set the alarm. In fact, it stopped bearing any resemblance to the actual correct time. My internal Stressometer needs the setting of an alarm to make it work (even if I know I’m going to turn off the alarm before it goes off—that only works, I think, if I SET the alarm, then my Stressometer kicks in). Alas!

So I used my little LL Bean travel clock instead. My dead alarm clock is now turned sideways on my night stand, still blinking.

I feel bad pulling the plug.

See, it looms, a comically large number peeking over Our Lady of Czestochowa.  . And yes, my nightstand is always a tidy asssortment of icon, G giraffe drawing, Lisa Brown art, and a painted rock I bought from a kid at a craft show. And a little card with an inspirational verse. And a paper heart my 10 year old made me.
Ok, so I moved the random sock & the 3 necklaces (missed one!) and a pair of earrings and the 3 lip balms rolling about. But the clock is looming. And do you KNOW how hard it is to get a picture of a blinking clock mid-blink?

And while I am not going to draw any cumbersome metaphors about Time Passes And Passes Away Like My Ancient Comically Large Numbered Clock while humming “90 years without slumbering..tick tock tick tock…life’s seconds numbering…tick tock tick tock”, I have been thinking about time. (See! This is where that other scary post started! Hah!).

This clock was a gift from someone I now only see at funerals, a family I spent a lot of time with as a kid. I always think of them when I actually THINK about this Comically Large Numbered clock. When I got this clock I was 17 years old, just graduated from high school. I now have a line item in my teeny tiny budget notebook for “saving up for graduation gift” for MY OWN CHILD. Yeegads. Where the heck did that time GO??

So I know I have to actually get rid of my gigantic number clock and get a real clock (my travel clock has to be bopped to light up, and I am so dreadfully nearsighted I need to have a clock I can SEE without flailing about, so I don’t keep flinging my glasses off the nightstand every time I try to check the time when I am up in the night pondering life). But this is a little bittersweet, because this silly clock outlasted SO MANY THINGS in my life.

Yes, in my cedar chest I still have the teddy bear shirt that I had that matched my high school best friends’ teddy bear shirts (you know it!), I still have my dusty yearbook with my awful picture (which I knew was awful then. Yes, I have always been Susie Sunshine), my sparkly unicorn stickers are still in a box, although I’ve given most of those to my kids. I have some things tucked away, but this clock, I used it EVERY DAY. I got it when life was large and promising and full of possibility. The clock went to college with me and my first apartment and then to my married apartment and then to this home. Years and years and years of my life have been measured by this Comically Large Numbered clock.

You thought I was kidding, didn't you. I do not kid about hoarding sentimental items.

I have had this clock longer than I have been married. Longer than I’ve had children. Heck, longer than I’ve had glasses smaller than dinner plates. Long time.

So I guess I need to go shopping this weekend and find a replacement clock. But I will remember the kind neighbors who gave the original Comically Large Numbered clock to me, the good times and hard times it has measured, and how getting to own a clock for 23+ years is a blessing – we know so many folks who don’t get that many years on this planet—so once again I am left thinking, How Can I best Use This Time Given Me?

Even if it’s no longer measured by a Comically Large Numbered clock.

And you know, since my soon-to-be-graduating child is one of my cattle prod morning kids, with the money I’ve saved maybe I can get him the Mother Of All Alarm Clocks for graduation…

Heheheheh.



*no sparkly unicorns were injured in the writing of this post.