Monday, October 16, 2017

Tchotchke Galore


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

I love Simple Things, too.


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


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

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

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


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

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


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

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

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


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

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


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

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

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

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

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

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

Thursday, October 12, 2017

What the Heck is the Convoy of Zen?


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

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

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

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

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

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

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

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

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


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


Monday, October 9, 2017

Movin' Right Along -- Back on the Road


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

It has been a slow climb back. 

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

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

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

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

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

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

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

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

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

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

With good friends you can’t lose

It could become a habit!

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

Together we’ll nab it,

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

Movin’ Right Along—footloose and fancy free!

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

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

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

--The Muppet Movie (original)






Sunday, June 4, 2017

Kindness--an Idea Worth Trying


 "Ideas have Consequences"

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

Here’s a new idea: be kind.

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

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

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

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

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


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

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

I know, it’s a stretch, but try.

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

Egads.

That would be The Best Day Ever.             

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

What a day that would be.

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

I think the consequences would be amazing.


Thursday, May 4, 2017

Compassion and the Darkest Hour


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

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

Monday, May 1, 2017

May Again


Fall, 2005.

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

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

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

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

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

Sigh.

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

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

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

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

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

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

Meh.


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

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

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

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

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

************************************************

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

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

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

Wednesday, April 19, 2017

Happy Pants, or Celebrating 1/8th Milestones (nowhere near an actual mile, but on the road)


(aka Zen and the Art of Baby Steps)

I am working hard to appreciate little moments, little things. This is a little thing. Microscopic, really…

So a while back I found an old journal of mine, I think I was 13 or 14 when I poured out my thoughts into this little notebook. One funny thing I came across: even then, I thought my legs looked like manatees. Manatees was the actual word I used to describe them. Maybe because I have always been uber-caucasian (people frequently asked me if I was sick, I am so naturally pale), or maybe because my legs were the only part of me with any juice,  I just thought my kind of juicy legs looked like manatees. Maybe this is why I have always liked manatees, I just felt like we were simpatico, somehow…

I like lettuce, manatees like lettuce...I like Florida, manatees like Florida...

And I know, for people who know me in real life, this sounds ridiculous, but as much as I’ve always been on the beanpole side of physique, I have pretty sturdy legs, apparently from my Grandfather’s genes.

I tend to skew a little bit like a cartoon character...This is why even in comics I draw myself wearing a dress, usually.

There is no deep life lesson here, in case you are wondering. I know.

I just have tended to be stupidly self-conscious about my lack of proportion. What can I say, I have some ocd tendencies, and the dis-proportional thing bugs. Running only made my legs bigger—stronger, which I really love, I love the feeling of mightiness I get from exercise—that’s another blog entry about my climb up Mt. Yikes-- but running has not been super conducive to skinny jeans.

First World “Problem”, exhibit A.

But recently, through a weird series of events (mostly involving Survivor Kid’s happiness as discovered in snazzy knit clothing) I discovered that Happy Pants are a thing, and that it doesn’t matter what shape I have—leggings in crazy patterns actually can help me be happy (small “h”, but still happy).

My first pair of Happy Pants were supposed to be a Yeti Homage, but they didn’t fit.  I only bought them for the Yetis. . .

And these knit Leggings did not fit. I was like a miserable human sausage in Yeti Casing. 
This would generally be enough to derail me forever (HOW CAN MY LEGS BE TOO BIG FOR LEGGINGS? PANTS THAT LITERALLY ARE JUST A KNIT TUBE OF STRETCHINESS??), but since you can’t return anything to this particular company (just exchange), and these were more than I would normally spend on leggings (which I had not worn since I was pregnant with firstborn back in 1994), I was committed.

I finally found a Sesame Street-esque pair of pants to replace the Yeti-Fail.

Well, these are some HAPPY PANTS.

When I opened the envelope I had a moment of “what have I done? Sweet Jesus what have I done? “ ala Jean Valjean.   I set them on the pile of random t-shirts I am trying to purge on the cedar chest in my room, and tried to get used to the CRAZY TRIPPY SESAME STREET 1969 PINBALL COUNTING PATTERN THING GOING ON. Yes, the pants yelled at me from across the room every time I walked by.

ONE TWO THREE FOUR FIVE, SIX SEVEN EIGHT NINE TEN, ELEVEN TWELVE…DOO DOO DEE DOO DOO DOO….

Now I had these pants, I had to find something appropriately subdued and Coleman-Tent sized enough to cover most of them/me.  Nothing was right.  After about 3 months I found a swingy black t-shirt at Target, bought it a size big, and finally wore the Happy Pants…

In my house.

When nobody was home except the dog, and she’s color blind, right? Aren’t dogs color blind?

Ok, so the secret pants were comfy. I felt…perky. Perky is not in the same time zone as my natural state, so…this was interesting.  While my legs now looked like crazy trippy Sesame Street 1969 Pinball Counting Manatees, I kind of didn’t care.
So what if I’m not exactly 29? So what if I am sturdy in ye olde leg department?

My epiphany?

Leggings are Happy Pants.

This is silly. This is such a small thing, my “hey, I can wear leggings!.” But the other day I wore a pair of leggings with flowers on them to the library. A PUBLIC LIBRARY. And at Christmas I wore Christmasy leggings to my niece’s performance of The Nutcracker. I feel festive and peppy and comfy and yay, and I kind of don’t feel that self-conscious about my shape in these Happy Pants. I wear black leggings all the time now, and feel comfy and boppy and energized.

Placebo effect? Maybe. I’ll take it. It’s a baby step in terms of self-acceptance, but it is a baby step in a very comfy direction.  I remember the first time I wore yoga pants, I had to mentally prepare myself. I am about as flexible as I am perky.  Heck, I remember when I first got SANDALS or wore a sleeveless shirt (I used to be self-conscious about my feet and my weirdly long arms. Yes, I needed therapy. BABY STEPS). Baby steps are still steps.

I have not worn the Crazy Trippy Sesame Street 1969 Pinball Counting leggings out in public yet.

Yet.

But I might. And I bet other people will feel happy when they see them. Maybe only happy that they are NOT wearing such crazy pants, but maybe these crazy pants will make someone else smile, too.

And hey, sharing joy is one of the best things we can share, right?