Claiming Hope

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops at all.

                        Emily Dickinson

            Ten days ago, a friend’s daughter was diagnosed with a brain tumor.

We are not super close, this friend and I, but I have known her since childhood. Growing up, our families spent a lot of time together, my dad worked with her dad, we were in the same prayer group, etc.  In grown up life, my husband’s sister married her brother; two of her children were classmates with my children, and I taught 3 of her kids over the years.

So I know her well enough that the gut punch of any new diagnosis was magnified a hundred fold.

            Our smite was supposed to protect everyone else who ever knew us.

            Seriously. WE ALREADY GOT DEALT THE RANDOM BRAIN TUMOR CARD, HOW MANY MORE ARE IN THAT STINKING DECK?

            My “no F-bombs during Lent” went out the window on literally the second day. Dang.

            Watching the pain ripple through family and friends, seeing from another vantage point what it must have been like for those who love us when G got sick…and knowing pretty solidly how little S’s parents were feeling in each of those first nights in the PICU with their third grader, the long hours waiting for answers in the surgical waiting room, the dearth of information, worrying about your kids at home…my soul just shook. I don’t know how else to describe it.

            My husband doesn’t have the searing memories of those first days like I do.

            He is lucky.

            I just can’t believe there is no herd immunity for smite. Seriously. I have 2 kids with brain tumors. How can this happen to anyone else we know from pre-brain tumor world?

            I know my friend is not mercurial like I am. She is zen and steady and wrangles 9 kids with a smile. I am hiding under my bed most days with 3 kids (2 of whom are technically adults!).  I have talked to her via text a little to offer support and little words of whatever. I don’t want to be Bargey McBargepants—and not everything I know will be helpful right now.

            But I need her to know Hope.

            Hope is real.

            When things are so, so dark, and hope seems to be lost or at the very least obscured…hope is still real.

            Hope sings the tune without the words, and never stops at all.

            Hope has to be grabbed in the dark, like a cosmic Marco Polo…holler for it, and reach out. You may end up splashing around for a while, but eventually, you might just catch it.

            I have written before about my challenges in holding on to hope over the years, my pins, bracelets, pictures, words, things I hold on to—literally tangible items—to remind me of hope.  I desperately yearned for hope, and some days had it, some days couldn’t grasp it…but hope is real.

            I have to find a way to share this with my friend.

            Two days after this devastating news, my G and I trekked to Massachusetts to surprise two of our dearest brain tumor friends who are celebrating their 21^st birthdays this year. I felt a little nervous about driving there alone, but the conviction that we Had To Be There was unshakeable.

            This was a celebration of 21, yes. But really—we were celebrating HOPE.

            These two mighty young women have been dealing with brain tumors and all their concurrent horrors for most of their lives. Surgeries, chemo, radiation, complications, lingering challenges, everything that onco-yikes can be, these young women have faced with strength and dignity. They are beaten but unbowed.

            As we shared pizza and ice cream and some ridiculously tasty cookies from NYC, all I could feel was a deep love and joy for these young women. They are both still in the thick of things. Both face challenges every minute. AND YET they ARE HOPE. They are hope over time.  

            Funny, spunky, and just keep going, slowly sometimes, but they keep on going.

            Even in the worst of brain tumor ugh—to paraphrase Maya Angelou –

            Still, they rise.

            And with them, their families, those who love them, their friends in and out of the brain tumor community. Hugging their mommas, these mighty, beaten but unbowed women who stood with me in our toughest hours, I just felt that connection, the connection of shared hope and pain and love and understanding.  Just being there reminded me that even as my soul relived that terrible aloneness of our own early days in brain tumor world, NOW we know we are connected to a much larger community—just not being alone is a great, great hope.

            Seeing these mommas renewed my hope.

            Hope does not guarantee a happy ending. Hope just helps us navigate whatever the story is in the moment we are in it. Hope helps us connect to something bigger than the bad moment that threatens to swallow us.

            This is the hope I need to share with my friend.  Hope is real. Hope is slippery, but it is real, and when things are darkest…hope can help us get through the night.

Please pray for little Shannon, as her family works to plan their next step through great uncertainty….

Zen and the Not Zen

Recently I have been working a lot, and while I find the balance of working 8 hours/then coming home and driving everywhere/feeding the horde/etc. almost impossible—hats off to everyone who does this all the time—the rhythm of being in a school, of working in an academic schedule, of a day broken into 40 minute blocks—all of these things are so delicious. There is zen in these moments, that sense of balance and peace that can be so elusive when everything in life is hitting the fan.

And when things are NOT hitting the fan, I feel acutely aware of how, in the words of Cosmo Sheldrake, “there’s no such thing as time to kill or time to throw away.” I have to use the time…

But I get stuck. I turn into a slug.

Maybe part of zen is accepting the moments of not zen, of accepting the stuck., of embracing the slug.

Ew.

I wonder if the Dalai Lama ever gets frazzled or overwhelmed by all the things? He is the most zen person I can think of. I wonder if he sometimes feels so much the weight of things, the old “the world is too much with us” reality.

The other day I did not have to go to school. My house was quiet and empty, the sky gray and cold. The hours before pickup #1 stretched out in a quilt of possibility.

Cue Slug Mode. 

Where was my do all the things? 

Where was my “no time to throw away”?

Sluuuuuuuuuuuuggy.

I made myself go on the exercise bike…when I know I have to exercise but feel like a slug, I know I can distract myself with YouTube while I get in 22 minutes on the bike. So I did. Building habits helps push past slug moments, even if in this case I was just a slug on a bike. 

I have not missed a day of yoga since January 1 (a goal for the year, even if it’s only 5 minutes)…so after the bike I decided to pick a quick yoga video. But hey, I said to myself, as I prepared to choose a yoga video on YouTube, first I’ll watch the new John Legend “Preach” video while I cool off for a second.

Fast forward 5 minutes to me in a weeping heap on my yoga mat.

Probably not Mr. Legend’s intention, but his artistic representation of how pain and injustice run rampant in our world flattened me. Literally to the ground, face to yoga mat, tears streaming.

How do we fix this? How do we end violence and strife and awfulness? How do we end the dehumanizing of each other? 

Does zen even matter? How do we fix this? 

I wish I could say that a blinding light appeared and an answer presented itself. 

Nope. 

I managed to scrape myself up and do some vinyasa flow to Brandi Carlile music, just trying to breathe, regroup, and settle my emotions.

15 minutes later, I trudged upstairs to my still empty house, a few less hours spread before me. My phone blinked a pile of notifications—

One of Dave’s family members had texted to share that a new baby would be joining the family in late summer.

And here, I CAN say that a light appeared, and in that group text flurry fest of hoorays and congratulations and smiles there was hope. Hope that life does go on, and families grow, and new beginnings keep beginning.

Awfulness still pervades so many daily interactions in America (and elsewhere). Injustice did not get fixed in that few minutes on a Friday morning.  But hope continues, and I could feel that.

Really—what came to me out of this day was a deep realization that it is ok to feel deeply. Maybe part of zen is NOT always staying completely unflappable—that is so outside the realm of my personality, I am flapping about all the time, a veritable Flappy McFlapmeister.

Even as we work to respond and not react to provocations both negative and positive—feeling deeply is good, and human, and honestly I think how God made us. Elie Weisel wrote about the perils of indifference, how NOT caring is worse than hate, more destructive and dehumanizing.  To feel deeply builds connection and wholeheartedness (to borrow from Brene Brown).  Freaking out-not healthy or productive. But the opposite of freaking out is not “I am a rock, I am an island.” I have tried that. That is misery, too.

My own quest for zen has, perhaps, been something of a quest to heal a lot of pain built up over a lot of years. Zen doesn’t mean being an automaton, or so deeply om-ing about that you disconnect from sorrow OR joy.  Zen isn’t hardening yourself so that you are impervious to stress (sigh). Maybe zen really means feeling the feelings, acknowledging that they are real, sitting with them, and continuing on may ultimately be what zen is all about.

Feeling all the feelings is hard.

Weeping over injustice and the pain of others, rejoicing in the joys of others—living life fully, engaging in the hard and the beautiful without getting sucked under—here is the challenge of zen.  I guess in my definition, zen really just means living in a state of shared humanity. Once again, in movin’ right along, I circle back to this. And once again, we return to zen as a journey, a progress, a path…living in a way that honors every other person as awesome. 

Phoo. I definitely need more coffee.

Zen and the Spotlight

“Turn up that spotlight, and though it’s not right, 

I simply can’t refuse its call….” –Nunsense

I cannot control all of the horrible things in the news. Wars. Poverty. Hatred. Exploitation. Racism. Sexism. Discrimination. Hunger. Disease. Hopelessness.

I cannot control the political and ideological quagmire sucking the lifeblood of our country. 

I cannot control people’s ideas, or behavior, or words.  Heck, parenting toddlers to teens taught me that (and really, the infant/adult versions of my progeny also taught me that!).

For a control freak like me, the litany of cannot controls whomps my brain, ramps up my anxiety, depresses my spirit. I feel like my friend’s cat who sleeps faceplanted into the ground. I feel you, Frankie.

Creative Napping credit: Frankie.  Photo credit Christine Dalessio

Meh. 

Saturday I reached my limit—again.  Maybe it is time to swear off all social media again, to stay offline except to check my email and what the Daily Markdown is on the LL Bean website. Maybe I just need to step away from all the noise and outrage (much of it justified!) and frenzied reactions and awfulness and go old school—like returning to the beta version of my life. 

But—

My far off babies are all online (ie my nieces and nephews who are piles of cuteness and love and bub-ness that are all that is good in the world). 

So many of my friends in the brain tumor and NF communities are in the thick of things right now, and social media is how they keep all of us who are pulling for them updated on things.

I only know about faceplanting Frankie because of social media. Solidarity, Frankie!

Slay the paper, then faceplant nap.

Photo credit Christine Dalessio

These are all good, meaningful uses of social media.

So—I don’t think a complete fast is actually going to solve the problem. My brain will just find different things to worry about.

Anxious and discouraged, I left my computer on Saturday to go to church ahead of a predicted storm. In the car I used yoga breathing practices to try and calm down, I felt that bad. And then at Mass, a couple renewed their wedding vows in honor of their 50^th wedding anniversary. 50 years of fidelity. 50 years of struggling through the reality of life together. The short, moving celebration of this goodness moved me deeply.  Despite the ugly outside the doors of our church, in this moment we celebrated good.

This was a sea change moment for me.

I cannot control the ugliness. But I can control what I focus on. I can control what I give my attention to, what I put a spotlight on. 

I can magnify the good.

This is my new mantra, my new practice of being—I want to be a magnifier of good.

I can put a spotlight on how pink the sky is when I walk Coco in the morning. I can spotlight the service projects my kid does, the Eagle Scout project my friend’s son is doing to benefit the hospital where he was treated  (which I learned about on Facebook),  the great grilled salmon I had at a restaurant in town. I can spotlight the things I am grateful for, the things that give me joy, the funny song or commercial that made me laugh.

I can magnify the good. 

yup, went Extra Large on this one. 

Magnifying the good does not ignore or invalidate the bad. Anyone who knows me in real life knows I have NEVER been accused of being a Susie Sunshine, all rainbows and lollipops and unicorns.  Not once. Never.  Hm. The bad is out there. WE ALL KNOW IT. The bad draws the spotlight to itself. The bad grows with attention. The bad festers and expands the more we feed it with “shares” and comments and focus and hyper-analysis.  

Zen means knowing how to acknowledge the bad while living the good. The bad does not get to win the day.

I simply choose not to magnify the bad any more by giving it attention it does not deserve.  I choose not to let the darkness grow in my mind unchecked. I choose not to wallow in that which I cannot control.

I choose to obey my own self-set rule and NEVER READ THE COMMENTS. Ugh. Failing on that this weekend; seeing people of my faith tradition referred to as “demonics” reminded me why NEVER READING THE COMMENTS is always a healthier choice. And this NOT reading is something I can control. 

I can stay informed without reading 50 articles about something. I can know what is going on and address what I can address without being consumed by the angst of a darkness I cannot control.

The darkness is large, and growing.  That is no newsflash.

I know that I cannot ignore it. Nor can I singlehandedly say “YOU SHALL NOT PASS” ala Gandalf to the Balrog.

BUT—I can magnify the lights amidst the darkness by how I talk to my children and spouse, what I write, how I post things online (and NOT in reverse order! Real life first!). One magnified light can literally burn a hole in things. What if we all tried to magnify the good instead of feeding the bad with obsessive attention? What kind of holes could we burn in the advancing darkness? Maybe enough to take the darkness down, together? 

So today—I choose to magnify the good. 

I am going to have to break some of my own habits. But it can be done. And when I find myself spiraling down a rabbit hole of EVERYTHING IS AWFUL (yes, sung like the Lego Movie song), I have to practice stopping, regrouping, getting back on the Magnify Good track...and keep movin' right along.

If you would like to support Davis Ammari’s Eagle Scout project, please check out the flyer below—and magnify the good this survivor kid is doing for others.  He is also accepting monetary donations--even $5 can really help make things less ugh for teens battling cancer. It is hard to be a teen onco patient when most support services are very much geared towards younger children. Thanks for doing this good thing, Davis!

Circle the Wagons

So I am going to lay some truth on you. 

Some days are way not zen.

Some days are the anti-zen.

Some days are all “then in despair I hung my head, ‘there is no peace on earth’, I said”.

Even on days where I use every single tool in my Toolbox o’ Zen, there are catastrophic moments that leave me gasping for air and wondering which end is up.

These are the days where I am reminded of the power of community, probably the greatest lesson I have learned over the last 14 years, just after “Dang, My Kid is Mightier than All Mightiness” and “If a Doctor Comes to Find You In a Playroom, You Are In Big Trouble”.  In the darkest moments of G’s illness, the prayers of others, the food brought by people, the information shared by those a few steps further along in the trenches—these things carried me, carried my family.

This week has been one of those weeks for a dear, dear friend, one of those weeks of gut-punching devastation. 

The one peril of the power of community is the reality that we share each other’s heartache—but in this connection comes wholehearted living, and I would not trade it for all the zen in the world. It is in loving others and caring and working to help each other that devastating moments become survivable, if not exactly bearable. Even with the grief and pain of this connection—the love is so much more powerful.

As my dear friend received a devastating new diagnosis for her son, a young man diagnosed with brain cancer two days after my G, our community heard the call to rally—a community built of cancer mommas and good friends and chosen family. We are circling the wagons around Melina. Granted, that reference is derived from Wild Bill’s travelling Wild West shows (and then Hollywood), not so much history—but the idea of circling around those we love, those who are hurting, is a powerful one. We can’t fix things. We can’t make it better. We can only do those peripheral things like pray and feed and share info and maybe send ill-advised stuffed animals (I am trying not to, but…Must. Send. Something. Soft and Nice!). But we can do it in a circle of love and support and solidarity.

This is not what I planned to blog about today—especially since yesterday was supposed to be blog day—but wagons don’t circle themselves. I guess in Beauty and the Beast they might, but that would be creepy. But this is what needs to be said today.

Please join our circle of support. Please, in this month of childhood cancer awareness, help us love, support, and protect a mama who has been relentless in her love for her mighty boy. After 14 years, to have this moment—she needs our love more than ever.

We love you, Melina, and Kayleigh, and super Levi. Know that there is a circle surrounding you. 

Please join us on Operation Love for Levi on facebook; please pray/meditate/dance by the light of the moon for this family; if you would like to financially help the family directly (ie without the fees GoFundMe takes), use the Venmo app to send money straight to loveforlevi (with Melina McAlwee as the contact). 

And really. Let’s circle the wagons and find some cures for childhood cancer already. 

#loveforlevi

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 1^st 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). 

Making Sense of May

So May. Here we are again. 

I am tempted, some days, to say “May” like Jerry Seinfeld used to say “Newman”, this month of double awareness.   I don’t know why some days the weight of this gets to me, that NOW WE NEED TO BE AWARE OF NF AND BRAIN TUMORS. I can’t remember the last day I was NOT aware, so, what’s with May?

Especially since so many of my friends are in both of these communities, social networking is overflowing with awareness facts, pictures, graphics, etc.  I find that inspiring, motivational, depressing, and overwhelming all at the same time.

See why it is hard for me to even pick out a paint color? I am perpetually conflicted. 

 Reading through my blog from last year, where I describe our family’s journey…ugh. I know that was an important thing to do, but it is way past “merely a flesh wound!” , if you know what I mean.   If you want to know what life is like with NF and brain tumors (and why I am scary), that’s a pretty good place to start.

But I had a thought today while running, once I got to a quiet side street where I was not just thinking “yikes, another landscape truck? Dodge! Dodge!” (meaning my action, not the truck brand).  Today is gorgeous. Spectacular. Right now it’s about 63 degrees and brilliantly sunny, the forsythia are blooming and the flowering trees are flowering, I could hear birds chirping and squirrels scratching at trees (I double checked, I had a moment of worrying that it might be a larger woodland creature, but no, just a squirrel). It was GORGEOUS.  I don’t like running, and today I really felt tired, but the beauty of the day just hugged me.

Two days ago it was 43 degrees and raining here, like Noah digging out plans for an ark kind of rain.   Roads are still closed by us due to flooding (I toyed with the idea of adding a mile to the run to go SEE the flooding, but then my body told my brain to shut up and head back home).   This winter was epic, even by the standards of the northeast, we had so much snow, my early perennials were very late this year because the gardens were buried under 2 feet of snow until March.

Youngest child & dog, walking ON TOP of 15 inches of snow. Cold. Cold cold cold.

The dark, the cold, the endless precipitation—it was a tough winter.

my viburnum after storm #493

I don’t know what May is like in other parts of the country.   But here—well, in another week or two we’ll be past the danger of frost and I can plant annuals in my flower pots.  Our yard finally needs to be mowed for the first time this year. Everything that was brown and frozen and ugh is now alive and lush and beautiful…

Not fully grown, my evening primrose are still only an inch off the ground, the butterfly bush is just getting its first green buds, the hydrangea and viburnum are just showing where their leaves will burst forth in a few weeks. By the end of May, this potential green will be realized. 

my viburnum today, buds galore!

In Jersey—and much of the northeast, I figure-- May is a month of rebirth, of everything finally emerging from winter and bringing relief and hope that summer really is around the corner.  Winter (especially this year) is so long and so hard, it makes us appreciate so much more when spring finally comes.  The air just smells good today.  The birds sound so happy (the winter was so quiet).  I am so happy that May is finally here!

I had this thought, while running, a thought that having both Brain Tumor and NF awareness in the same month is really so meaningful…because May is so much a month of hope. We’ve had terrible losses in May, terrible grief over friends we love, lost to these two awful things…but there is still hope in the midst of that…hope that our love and memory for these children and adults can fuel our work for a cure.

Brain tumors and NF are both scary frozen wastelands a lot of the time. Nothing about either is nice…BUT within the communities that have grown around these dastardly beasts there is hope and love and a sense that we are moving towards summer.  Right now we may only see potential for a cure, for treatments that work without destroying a child’s future, for understanding the cellular mysteries NF and brain tumors hold…

But just like my viburnum and my hydrangea, that potential WILL come to fruition. I really think it will—and the hope and new life and green and sunshine of May are a WAY better time to think about these awful things, to see them in the sunlight of hope. 

By August the sedum this owl is guarding will be taller than the owl.

Ok, that sounds maudlin, but I really don’t mean it that way.  If both months were in February I would have to hide under my bed.  Having May be the awareness month for both of these things that have truly changed everything about our family is in some ways a blessing.  The beauty of this month can be a hopeful lens through which to present and understand the realities of brain tumors and NF.

We appreciate the green and warm and sun so much more after the awfulness of the winter we had.  And after the awfulness of rather a lot of the last almost 10 years, I appreciate the hope that is fostered in this month of May.

Next Tuesday is MRI day. We may be basking in sunshine or once again hoping for that potential yay to find us again…I don’t know. But I am trying, fighting against my wintry self to see the hope in each day of May, instead of the painful reminders of what’s past…to see the hope.  

Live. Hope. Find a Cure.