Zen and Stepping Away

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

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

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

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

borrowed from the internet, because yes. 

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

this seems appropriate

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

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

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

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

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

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

Like this kind of peace of mind.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another Perspective

Another perspective.

So…I have to blog something that I know people will disagree with. I have to, because I teach my 12^th graders to speak out, to not be cowed by public opinion when there is something they believe in that needs to be spoken.


Today I saw something that made me think, and realized I have to practice what I preach. Ugh.

Seriously, I've had a silly blog written for 2 weeks and haven't posted it. Ugh. But this...just wrote itself.

So please, if you read this, just hear this as a different perspective. Not a judgment, not a rant, just a perspective that I think sometimes is missed…a perspective that comes from my faith tradition, but also from my role as mom to two NF children, one with a moderate case, one with a severe case, wife to a man with NF, and advocate for kids with NF.  Everything here really is meant to be said with great respect and lack of judgment: if it comes across otherwise, please forgive my clumsy use of language. I truly just want to present a perspective that isn’t always spoken.

And I get that people may very well have the opposite opinion. That's ok.
Can you tell I hate stirring the pot? sigh.

Anyway, I saw an online article today about a family that used a new technique called pre-implantation genetic screening before  IVF to make sure that they had a child who does not have NF.  (Boy-born-free-of-potentially-deadly-gene-thanks-to-IVF-screening)Embryos were examined, and the one eventually implanted was found to be NF free. The family is very happy with their child (which makes sense, children are a huge blessing, and this family obviously thought long and hard about how best to have their family). Doctors are pleased that the "controversial" selection process worked so seamlessly.

And I felt...uneasy.

I just felt troubled by this process, the selection process, I guess. Because where scientists see NF the disorder FIRST, I see my NF children, children who by this process would not have been born.

I get it, I do, the fear parents have when one has NF, the knowledge that even a parent with a mild case can have a child with a more severe case. I have that t-shirt in blue, pink, and purple.  And I understand, heck, I work very hard to fund research to make NF NOT destroy my children.  We’ve had some close calls in this house.  Really close.

This week was MRI week for my child with the severe case of NF. We compared this scan to the one that showed massive tumor progression in an inoperable location in May 2012. I get how bad NF can be.

And yes, my children have endured suffering. This is the worst part of parenting, seeing my children suffer—but I also see them thrive, and succeed, and bless others. I see them laugh with friends, sled down a hill, go to school, dance in the Nutcracker…heck, my second born danced in the Nutcracker (in the way she does) 4 days after brain surgery.  And when she was up there being a Lead Gingerbread, her hair carefully arranged over the surgical incision, and with all the little kids twirling around her, I didn’t see NF. I saw my child.

Yesterday my youngest got her back handspring alone for the first time. I saw my child, not NF.

When our little buddy calls for G to help him with his chemo, even DURING HIS CHEMO we see this riotously funny and spunky kid, (and often his cat), NOT NF.

When G’s friend pins her latest nail polish design on Pinterest, we see a hugely styling and creative kid, not NF.

When a friend out west sings his heart out at karaoke, we see a boy with the voice of an angel, not NF.

When we hung out with our friend Sandra, we laughed, we watched Sponge Bob, we ate ice cream, we saw her amazing heart and spirit in everything she did, even as NF took her from us.  We saw HER, not NF.

All of these children…well, that’s what I see. That’s my perspective. 

There’s no such thing as life without pain. Well before I had heard of NF, LONG before I could spell it, I had pain in my life. Much of my own life journey has been trying to focus on the joy in life. My children are joy. Ok, they drive me insane, too, but really—their lives better the world. And they love life.

At teacher meetings this year, my youngest daughter’s teacher told me this: that my R had said that yes, sometimes NF and brain tumors are hard, but because of them our family has gotten to meet such wonderful people, such kind and amazing people, such great friends.  Her teacher got choked up telling me this, and honestly, I was …well, what do you even say to that? A few weeks later at home my R said the same thing to me, her head tilted to one side, her crazy hair loose around her face. “We are pretty lucky, mom, we know so many great people because of NF and brain tumors.”

Yes, we are.

An NF mom once said to me that her NF child sometimes felt sad when he saw the tagline END NF. He took it personally.  I think that’s kind of the same moment here—I understand why families may want to make this choice, and I do not judge them for it—I just see this through the lens of a different perspective—I see MY NF children as not making the cut in this process.  I would hate to have lost them to NF before they were even born.

And while we will NEVER stop working for better treatments, for more research, for a cure (my brain is dizzy some days from reading about MEK inhibitors and bRAF this and that) —we hold on to this perspective that sees the person first: with all that may entail, the unique, amazing, mighty, funny, loving, compassionate, persevering kids and adults we know and love…and the disorder second.  My husband has said that his experiences with NF have made him the man he is today—one who never judges by appearance (EVER), one who is always ready to help, to lend a hand, to show compassion, to work hard for his goals.  I hope and pray my girls get to grow up…and be like their dad, and the other amazing NF grownups we know.

That said, I better go work on stuff for our next fundraiser, our Coffeehouse for a Cure…FOR NF! 

Thanks—I know folks may vehemently disagree with me, and I respect that. I hope that folks can respect this perspective too. 

I am not Aretha Franklin. Sigh.

I am not Aretha Franklin.

Yeah, it’s a newsflash to me, too.

You see, I always, always have said that I was going to BE Aretha Franklin when I grew up.

Today I hit an age where there is no question, I am Grown Up. There is also no question that I am NOT Aretha Franklin.

Realistically, I knew that I would not magically turn into the Queen of Soul. I think I just hoped I’d get that finger wagging, slippers wearing power of Aretha in the Blues Brothers, so I could say unto the world, “You Better THINK About What You’re Trying to Do to Me”. I think I really wanted confidence and attitude and yes, a set of pipes that makes the rafters shake.

I am not Aretha Franklin.

I still can’t sing, I stood up for myself last week and had someone get all up in my timid, non-confrontational face and try to jump down my throat, and I am literally about half the woman Aretha is. So I am left, unfortunately, trying rather unsuccessfully to NOT be Eeyore this year. I have long not been a fan of birthdays…pretty much since I turned 15. That was the first birthday where I received the wonderful gift of self-loathing. The crazy thing is, NOTHING BAD happened at that birthday. My mom made a lovely dinner, I had friends over, I have NO CLUE why THAT year was the year everything first hit the fan.

It took me until I hit 35 to finally, FINALLY not be overwhelmed with ugh on my birthday. I was ready to be cheerful and eat cake. Ironically that was the first birthday that I spent the night in a hospital waiting for ambulance transport for my child to the Biggest & Best Children’s Hospital a few hours away. I remember how surreal it was to be listening to jazz on an ambulance radio at 4 a.m. while we drove down the Jersey Turnpike, windows wide open to help my daughter’s temperature go down. That was a memorable birthday. My spouse eventually brought the cake down to the hospital, we were stuck there a week…

My youngest child cannot comprehend WHY Mommy doesn’t love her birthday. Why does Mom NOT want to do anything or mark the day? I wish I had a good answer other than it feels fake to me. I don’t even feel like eating cake. Yeah. It’s like THAT. Eek!

I still wish I was Aretha Franklin. I think on these days that mark the passage of time I just get a bit whomped with the way things are the OTHER 364 days of the year. The last several months have not been a fest of hooray—and as mom/wife, a lot of the reason for that comes back on me.

There’s a song I have been listening to a lot recently, a song that says, “you are more than the choices that you make/you are more than the sum of your past mistakes/ you are more than the problems you create” …I am trying to believe this. But some days, “it don’t take too much IQ to see” what I’ve done to me. Aretha trumps all.

So tomorrow will be the first day of a new decade for me. Tomorrow will be another regular day with work and baseball and rain (and maybe then no baseball) and laundry and vacuuming I don’t get done. Life goes on.

My almost 9 year old is standing next to me, balancing a Hershey Kiss on her face and trying to roll it into her mouth. My spouse stepped in to help the 12 year old with her English homework after I totally lost my temper. Even the teen is trying to not be hideous. My 12th grade class gave me a Boston Crème donut with a candle in it. The third grade girls sang an alarming rendition of Happy Birthday to me that was quite endearing if somewhat painful to the ears. I am grateful for the many blessings I have. …I’m just not a birthday kind of gal. And that’s ok.

And you know, even in the Blues Brothers, Aretha eventually gets left behind. She has to figure it out on her own, I guess, comforted by fried chicken and a Coke. Hm. I could live with THAT.
; )

So here’s to being a grown up. Maybe I can focus on becoming Judi Dench now…


NOTE THE OFFICIAL DISCLAIMER OF TRUTH: This is a No Fishing Zone: I am NOT FISHING. I am not fishing for reassurance and comfort or anything like that. I am just saying it like it is. My bs-ometer was blown off in 2004, and now I just Say Things, which is awful but true. Imagine family holidays: Yikes! Please don’t rush to say nice things, I Know you all, you are nice people, and you will want to. I’m telling you, my brain can’t hear it on May 17. It’s just one of Those Things. So don’t worry. Tomorrow is another day. I have no problem with Leftover Cake. ; )