Thursday, February 18, 2010

the bell

my buddy barry will finish his chemo today.
at two o'clock e.s.t!

words cannot describe the moment of joy that hovers over this magic moment.

as he leaves princess margaret hospital in toronto,
signalling to every single person within earshot
that he has finished his chemo.

many years ago my best buddy peter, a man who smoked like a damp campfire all his life, found himself dealing with lung and brain cancer. he really didn't let it cramp his style at all though as he travelled to and from toronto for all sorts of radiation and chemicals and counselling and support, and then he ended up with a metal frame attached to his head which made him look like a nutbar. all the while he showed up at the local hockey games with me and we laughed at the pics of him, and then we laughed even harder at his truly horrible baldness! like me, peter couldn't really carry it off because of his skinny head and noble proboscis.

later, when the cancer really nailed him, i remember one moment in palliative care
when i held his hand and then took the plunge and hugged him.
i love hugs. but peter was not a person who hugged.
but we hugged and held each other close - because it was so damn unfair.
the whole thing sucked.

i didn't know that it was a taste
of a challenge that would be even more difficult.

two years ago, i watched one of my students - diagnosed with brain cancer - wade through the endless trips to toronto: appointments for this, that, and the other thing.

i celebrated her tortuous walks into the class when she somehow found both the strength and the will to come in. her hair was gone, her face puffy, her body exhausted, and yet still she sat at her desk and tried to go after the work we were doing. her voice slurred, her balance shot, constant headaches from the shunts draining the fluid from the area around the tumor and then the brain surgery itself. this girl would go in for brain surgery and a week or so later arrive at my room ready to go. well, not ready at all, but wishing she was.

can you imagine?

she'd sit there with blurred vision, her scalp freshly scarred and every time i saw her i thought - this is all she can stand - this is my last time seeing her. i once thought in my mind "please take her back" and the thought left my head almost as quickly as it entered because i wanted her to win this battle as badly as she wanted to win it. i just couldn't stand to see the suffering.

but!

i want you to know that she was given days at one point - less than a handful of days - and her mother came in to tell me and we cried together because her daughter had a christmas gift for me from sick kids hospital and she wanted me to have it for my christmas tree. this kid - dying and days from flying away at the age of eleven wanted me to have a christmas ornament! what can you take from that?! what can you learn about the strength of this child?! what can you learn about valuing every single moment and living your life as it was meant to be lived?

i want you to know that she won.

i want you to know that she is alive. that she is a feisty, gutsy young woman. i want you to know that she beats up her sister, that she hates school, that she argues with her mother and most especially that she managed to ride a bike - a dream of hers and that she is concerned with her appearance like any kid her age ought to be.

i want you to know that through the course of this experience, my class raised thousands of dollars through whatever means we could, including me shaving my head - which cost the kids more than they'll ever know - as each are scarred with the vision of their skinny fifty plus year-old man teacher - completely and thoroughly bald! (unlike barry, i'm not naturally handsome and i can't carry off the bald look that easily!) i want you to know that this year my class will follow the same process of raising money to help make life better for people fighting cancer including shaving my skinny head.

but let's move to this present moment.

i'm writing this today,
knowing that around two o'clock e.s.t,
barry is going to either smash the snot out of that bell,
or perhaps gently tap it -
or even something in-between.

i know a little of your joy barry and as you read this
i am celebrating your fortune
as you experience it in its fullness.


by the way -
what's extremely cool is that there are hundred's of other people out there ringing a bell for barry and if you would like to read their take on this magic moment then you should nip over here!

52 comments:

Penny said...

i dont know whether to laugh or cry, for the joy of them being there or cry for those who didnt make it. Look forward to seeing your skinny bald head oh wondrous one.

Dan Gurney said...

wow. what an inspiring story you tell about your young student! Barry is inspiring.

Thank you!! The bells shall ring tomorrow (11 o'clock here on the Pacific coast) for Barry.

Jenny Stevning said...

Heartbreak. LOVE!! Oh, Steven, (sorry about the language) but this is so damn beautiful!!!
Thank you!

Kay said...

wow...that was a and loved people with cancer who have lost the battle...go ring all the bells barry!!....

NanU said...

not handsome??? pshaw!

one of my mentors is at Sick Kids, and i don't know how he does it. it's so hard to let people go, and children especially.

i can see barry ringing that bell already. maybe starting with a light tap, then a pause, and banging it for all its worth! a little of everything.

Titus said...

Thanks steven, not an easy read but a valuable one. I'll be ringing a bell for Barry.

Lorenzo said...

I click to leave my comment, not knowing what words to pluck from my speechlessness. This is absolutely beautiful, Steven, and so apropos. The recollection of your friend and especially of the student and what you have learned from these experiences is wonderful. It sets off bells ringing in my mind, chiming out the abiding truth of the title of Dylan Thomas' poem "And death shall have no dominion" ...

steven said...

penny - first off - no one (not even me) looks forward to seeing my bald pate - i'm really serious!!!! next up - well it's all so sad and really crying, anger, and then also hope and joy all meld together moment by moment in any discussion of cancer. it's a battle that can be won. steven

steven said...

hey dan - the girl was amazing, i've known two students who have gone through this difficult process. both are survivors, both were remarkable in ways my story barely begins to describe. you teach dan and you know how intimate that connection is with your students. i know they blow you away all the time with how they simply are!!! have a peaceful day my friend. steven

steven said...

jenny thankyou for your kind comment. steven

steven said...

kay i think part of your message flew into depixillation land!!! however thankyou for your support of barry!!! steven

steven said...

nanu then you know how amazing sick kids is. i was involved with almost every player on their team from the doctors, through to the physio people, tutors, counsellors and each of them worked from their heart. i know how they do it . . . i just don't know how they deal with losing a battle. thanks for cheering for barry. steven

steven said...

titus thanks for ringing the bell for barry. doesn't this piece amaze you - it reinforces all the positives about the blogging community. steven

steven said...

lorenzo - something of what causes me to write about the very small and beautiful things in our world is the realization that came with watching these two people deal with something so horrible and yet not lose their sense of the value of life. i have never taken life for granted but i was brought to value it even more through their battles. thanks for your thoughtful comment. steven

Bonnie, Original Art Studio said...

How moving. How inspiring. I will be ringing a bell at 2:00 p.m. today.

Vicky commented on my blog, that if she cannot find a bell to ring she will ring her doorbell over and over for Barry.

Many a bell will be ringing today.

Abe Lincoln said...

Nothing left to say.

Kaotic said...

Just discovered your blog today, and I'm glad I took to moment to stop by and read. This post is really inspiring.
Read a few older posts and I must say I enjoyed the journey.

Susan at Stony River said...

What a wonderful post, and what a wonderful day for Barry! I had to go look at a map and count time zones, but now I know it's 7pm today my time, when Barry's ringing and I'll be picking up a bell to celebrate too. My father and oldest sister died of cancer, and my youngest sister is fighting it now. But even the worst things bring us gifts if we open our eyes to see them; surprising but true.

Have fun getting shaved! LOL My head's not made for that either!

Pauline said...

As always, beauty and inspiration hand in hand - I imagine all those who've gone ahead ringing bells along with those of us down here - the world will be full of the sweet music of hope.

Golden West said...

I am one of Barry's readers - he has been through his treatments with grace and a remarkable sense of humor. I will ring a bell for him this morning at 11 our time, and for his wife, too, who has been so steadfast these many months.

willow said...

Smiling, with tears streaming down my face. xx

The Bug said...

I'm here every day Steven - I just don't comment very often. Most of your posts are like a meditation & somehow I feel like commenting interrupts the meditation...

I had tears in my eyes reading your story - gracious letting go & determined winning. Either path has its own hope to offer. Thanks for giving us that on this day of bell ringing!

Reya Mellicker said...

Wow. And wow again. One of the things I am so confused by is the willingness of health care professionals to say how long their patients have. No one knows. No one. YOu can do everything "right" and still die, or do everything "right" and live on to be an ill-tempered teenager and beyoond. Or do everything "wrong" and live - or die. Not up to us.

I agree with you that cancer SUCKS in every way possible, but also that it is a cruel gift to so many people who are shaken alive and awake by their own experience of it, or the experiences of those they care about.

I'll be ringing my Tibetan singing bowl with the purbha that Butternut Squash sent to me last year at 2 pm sharp, rejoicing, just like the rest of us, about this fortunate turn of events.

L'chaim!!!

Linda Sue said...

I should know better- I should know to read your posts when I don't have to do anything for the rest of the day but dwell, be all emo, and wonder about degrees of loveliness- If I were to make a Steven pie the main ingredient would be loveliness, with a bit of nose...What a beautiful post- I am paralized... and yes, I will be ding donging for Barry- I have a collection of bells in front of me eager for the hour!

Jennifer said...

Steven, thank you for this, in ways I can not articulate now. I wish (there should be a stronger version of that word) Barry good health.

acornmoon said...

Good for you Barry! What a lovely, life affirming thing to do.

There are so many brave people in the world, it must have been a very humbling experience when your student had a Christmas gift for you. You must be a very special teacher.

It is so nice to read that she survived.

stregata said...

I heard your bell and mine rang also!
Thanks for sharing these stories!

Skip Simpson said...

The bells rang in Alabama at 2!

steven said...

skip i am so amazed at the linking across the spectru of human experiencing and geographic location that has come with this amazing event. steven

steven said...

hello stregata, i'm so proud and pleased to be alongside such an amazing gathering of people. thankyou for sharing the moment. steven

steven said...

acornmoon - the whole situation arrived almost unexpectedly but i feel now i was in the right place at the right time and that my work really took on purpose when this young girl appeared on my class list. none of the process was easy. it's horrible to be a dad and to see a girl of such a young age suffering, but the strength i saw in her and her complete disregard for the harsh reality of her life was so inspiring and i learned to not concern myself with the trivial as much as to elevate the simply magnificent. steven

steven said...

jennifer wishes are very very strong as they connect to our articulation of the future becoming present and so your choice and use of the word is entirely appropriate and magnificent!!! steven

steven said...

linda sue - there'd need to be lots of nose - i'm genetically inclined (thanks to a roman some very long time ago who found a girl somewhere near northumbria i think and fell in love with her enough to share in the remaking of him and herself with me being the many generations removed result) - towards a noble proboscis.
anyhow, when i reread my posts - and i do that at the end of a day - i read them as written by someone else. this one was tinged with a lot of painful memories still hovering in my body and certainly in my heart. i can feel them as i read.
this blog is in a space that i have wished for - for myself - for a long time and i am glad that it is here for others to also enjoy. i don't know where this will all lead but i'm grateful for whatever has brought this quality of energy into me and then into this digital representation of that state!!!

steven

steven said...

reya - the cruel gift piece rings like barry's bell in my heart ears as i consider the flying away of two people who held a special place in my life. rightness and wrongness melted away in the face of their experiences and so i am with you about the suckage factor - which is high - but then also there's a good learning that spreads like dandelions across the field of human connection. thanks for your lovely thoughts. steven

steven said...

hey bug - thanks for that! really thanks. i'm okay with visitors who leave with something that isn't measured by their comment. really i am. i am happy to respond to everyone who visits but it isn't a measure of your appreciation to leave a footprint. the footprint is much larger when it leaves and is a part of your experinece and then who knows where it goes?!!! thanks bug. steven

steven said...

awwwww willow. it's tough stuff - it really is. have a peaceful evening at the manor. steven

hope said...

What a wonderful way to signal you've pounded Cancer to the mat and won the round!

And the whole time I was reading on the little girl, the little girl in me was whispering, "Come on! You can make it!" I'm glad she did.

My Dad's onocologist's gave out a hand full of balloons to those who reached the 5 year mark at the conclusion of that appointment declaring such. And when that person walked through the waiting room with their balloons, everyone in the place applauded and if they could, stood.

Dad only reached the 4.5 year mark, but he made a lasting impression on everyone he came in contact with. We're huggers, my family. Interestingly enough, my maiden name was Huggins. Guess it's in the genes.

GOOD FOR YOU BARRY! March on!

steven said...

golden west it's so thoughtful of you to mention linda - barry's wife - as she has been so very present in this whole process and has had to return to teaching despite . . . . . . . steven

steven said...

pauline that's really well said - i particularly appreciate that you include the idea of hope in your thoughts. steven

Margaret Pangert said...

I also rang my Chinese chime-gong for Barry this afternoon. He has shown so much fortitude and has had so much to face that I can only pray that he will have many more days. The story of your student was very moving--it's so inspiring to see a young person with so mcuh pluck. And you're a beautiful man, Steven, inside and out, with hair and without.

steven said...

hey susan!!! it's so cool for you to chime in and share in this magic moment- especially with your own associations and sadness. have a peaceful evening. steven

steven said...

abe - it's really neat that you know about silence. sometimes it's so powerful. steven

steven said...

hey bonnie thanks for visiting and i'm glad that you'll be making a contribution to the great boinggggggg!!! steven

steven said...

hello kaotic - thanks for visiting. i really am glad that you enjoyed your journey here. come back when you need to travel further down the river. steven

Kathleen said...

Magnificent! How fortunate Barry is to have you as a friend.

Rachel Fenton said...

I think you are a very special person, Steven, and I'm sure you being a part of the lives of these people had no small part in their fight.

A child at my daughter's school has recently been diagnosed with cancer. It's so unfair. I only hope she has a teacher like you.

steven said...

kathleen - thanks. i feel i'm the fortunate one!!! steven

steven said...

rachel - thankyou that's very generous! i hope that the child at your daughter's school is surrounded by kind, caring, loving people wherever she goes. it's a huge part of the battle. a huge, powerful part. steven

Barry said...

Hi Steven, regarding your insertion of the phrase "unlike barry, i'm not naturally handsome and i can't carry off the bald look that easily!"

The cheque is in the mail and you should receive it shortly.

Leslie Avon Miller said...

Wow Steven. Thanks for a very poignant story of the will to live and thrive. I came to say thanks for ringing the bell with Barry.

steven said...

thanks barry but i'd like you to consider buying a nice bottle of wine and when the time is right - share it with linda!!! you know that there's real joy to be found in that moment my friend!!! steven

steven said...

hello leslie avon miller!!! thankyou for visiting. i couldn't miss the opportunity to chime in with my own ringing!!! what an amazing moment in the blog world and all the other worlds that we impinge on. steven