A gift from Jesse

I would like to thank everyone who has donated time, money, etc. in Jesse's name to various charities, organizations, benefits, schools, etc. It means very much to me.
Ed L.
And here is a gift to all from Jesse.

TIMELESS

The old ocean gray hat,with its soft veil and hatpin

Left over from a hundred years past
It crowns the pale face touched with light rouge;
A face not old, with the creases of thought,
Nor young with the image of naivete
Completely awash with knowledge and understanding.

Fire dances in the hearth
Reflecting off a silver tea set
Laid out in front of her like jewels for a queen
The embossing, weathered gold, glints faintly off rows and rows of dark
book bindings.

Silently, that face turns to me.
Just a tiny move performed with such grace.
Then the smile, a smile so perfect, so indescribable,
Warm as autumn sunlight, yet soft as dark velvet night;
Comprehending my every thought
And soothing every worry.

Through the many distorted panes
Comes a failing November light
If adds to the image, just the touch of another dark color
to the antique rainbow framing the timeless face.

I turn away, attending to the infinite list of life.
And in that moment, as in every other moment following,
She is gone
The smile, the face with all its grace,
And the image is incomplete.

Jesse Lopata

Relay for Life

On April 8th I will be participating in the 2011 Relay for Life. (Emily Jacke posted about participating last year I believe). The relay is a great event that raises money for the American Cancer Society. To quote them,

"The American Cancer Society Relay For Life is a life-changing event that gives everyone in communities across the globe a chance to celebrate the lives of people who have battled cancer, remember loved ones lost, and fight back against the disease. At Relay, teams of people camp out at a local high school, park, or fairground and take turns walking or running around a track or path. Each team is asked to have a representative on the track at all times during the event. Because cancer never sleeps, Relays are overnight events up to 24 hours in length."

Needless to say, I am doing this in Jesse's honor. The team I'm on (called "Cancertainly Sucks") has a total fundraising goal of $1000. We would love to meet and surpass our goal. The team is made up of members of a student-run grief support group, and several of us have lost loved ones to cancer. So far I have reached out to Jesse and my generation at NMH, but thought that his larger community would be equally interested. Please feel free to forward this information on.

Please help! Go to my page http://main.acsevents.org/site/TR/RelayForLife/RFLFY11National?px=19094203&pg=personal&fr_id=29326 and have a look around and maybe donate a couple bucks. The website is really well set up and there's lots of information about the event and where the money goes. I'm doing this because I loved Jesse and hate cancer. If you feel the same way, please consider giving.

Thank you,

Annie

Division of Oncology

Carolyn A. Felix, M.D.
Colket Translational Research Building
3501 Civic Center Boulevard
Room 4006
Philadelphia, PA 19104 - 4318
Phone: 215.590.2831
felix@email.chop.edu
www.chop.edu

November 17. 2010

Mr. Edward Lopata
P.O. Box 353
Marlboro, VT 05344-0353

Dear Ed,

Thank you for your recent email. I hope that you are well. Each time I hear from you I feel a tremendous sense of zeal for the privilege of being the clinician scientist you selected to travel through this chapter of life's journey with you by endeavoring to translate Jesse's college tuition into a cure for the very disease to which he succumbed. As always it is nice to be able to update you on the progress we arc making towards conquering MLL leukemia. You are making a tremendous difference with your support for this work. No words could adequately thank you for what you have done.

Last year, the Children's Oncology Group was just launching a clinical trial based on discoveries by my lab at The Children's Hospital of Philadelphia. We had found that MLL leukemia is sensitive to a drug that we have been testing to restore the pathways to leukemia cell death. The COG clinical trial is a Phase I trial to find the appropriate doses of the drug
in children, and it is ongoing.

Since that time we also have continued to learn much, much more about how this drug is working, including being able to identify, based on fundamental characteristics of the leukemia cells at baseline, which cases are likely to be most sensitive. And, even more importantly, the rigorous and deep characterization of the cells at baseline has allowed us to identify
different drugs to test in combination with the drug in the Phase I trial. As we now embark on these next studies, we are very optimistic that these combinations will make what looks like a very promising drug from our detailed studies in the laboratory even better and that we will be able to translate these discoveries into cures.

Beyond the progress we are making in the laboratory, there also have been many very exciting changes and additions to the already outstanding resources at CHOP that will be able to be leveraged to realize this vision. My laboratory relocated to CHOP's brand new Colket Translational Research Building (CTRB), which was dedicated in June 2010. The CTRB is
home to the Center for Childhood Cancer Research, Leukemia / Lymphoma Section and Developmental Therapeutics Program with a consolidated infrastructure to achieve a translational research mission. This consolidated approach has been
very helpful to my mission to conquer MLL disease.

I look forward to providing you with more good news on the progress we are making. As the Thanksgiving holiday approaches, I will be thinking of you, your family and your dear son Jesse and the major inspiration that you all continually provide me towards making this all happen as a tribute to him.

As this holiday approaches I am also wondering if you might post this update on Jesse's website so that all will know how Jesse is continuing to battle this disease, but only now from above!

Have a Happy Thanksgiving and please know just what you have done!

Sincerely yours,

Carolyn A. Felix, MD
Professor of Pediatrics

c.c. John M. Maris, MD

scanned and converted by ocr 11/28/10

Marlboro Fair

Something about the Marlboro Fair brought back the palpable presence of Jesse. I love that the children visit the cemetery during the day (my ten year old Aidan among them), even if they have to be reminded to be respectful. 

During the summer, Aidan collected things for his new class--5th grade at Marlboro with David! Inside his fancy new three-ring binder, I found Jesse's photo tucked into the plastic sleeve for a loved one. 

The mystery of life continues...

Dear Jesse,

Just thinking of you, on this equinox; missing the chance to walk into the reading room of schauffler to find you with your head bent over a book by Voltaire, or to chase leaves with you on the way to tea... At least I can still tell you about my peppermint plant named Annie, and the headdress of yellow beech leaves I made today. I know you can't reply, but I feel somehow you are listening.

Jesse's Unveiling

These from the intimate and heartfelt gathering commemorating the unveiling of Jesse's memorial stone. For those of you there and those there in spirit...

A poem of Jesse's, a stanza of which is inscribed on the back of the stone...

The Architecture

Lines around space
but in it.

I am confronted by
the simplistic organization.

Ordered picture frames of
nows and thens, heres and theres,

Is our universe
organized in this moment?
with insides and outs?

Or only the instant when
the frame opens.

And the maple leaf floats inside
resting delicately as if to say,

This frame is not broken.
The picture is just now complete.

JJL 2005

I wrote and read this for Jesse on this sad, sad day of laying one part of this journey to rest; as the rest of the journey continues. ~Lisa

The Architect

Jesse came into our lives on a crisp and blazing October day. He was radiant and comfortable in his little body: a true Vermont child. I was enchanted from the first instant I looked into his deep eyes. He would always awaken with a sweet smile, his neck arching back and to the side in a slow feline stretch; a gesture he never lost.

Of course I already knew him. At some time in the late summer I had taken to seeing him in every shooting star above. I don’t speak metaphorically here. Ed and I slept under a skylight and I literally saw shooting stars as I was carrying him into late term…settling into the dream-awakening reality of welcoming this strange new being, turning and tapping inside of me. I heard his echoing voice in the stars. I hear him now.

You all knew / know Jesse. I don’t have to say much by way of expanding your knowledge. But I have thought of how I would convey the preciousness of Jesse to some new inquiry.

“Tell me about your son”…

Well. He was not a child of this time in many ways. Or perhaps more correctly, Jesse was a person, from a very young age, who lived just a little bit outside of time. I like to say a nineteenth century man, grown up from a Renaissance child… but I’m not sure anymore of the specific histories of his imagination and bearing.

He just came in with a broader brush than most, with a wiser heart, and caring concern for the aesthetics of refinement. Jesse never wore a pair of jeans, even on his toddler legs. When he discovered button down shirts, he never donned another sweatshirt. He wore a tie even on the hottest days of summer. And he had a trunk of costumes in velvet and brocade, tunics and capes that he dressed up in as part of his play – well beyond when most kids go there. He loved the sensuality of these exotic garments against his body and the freedom of characterizations that he could explore while traipsing with his courtly, or maybe troubadour airs.

But these were the trappings really, just the surface dressings, of a mind that loved to look backward in history for the mappings of internal order and quiet composition. Jesse spent hours looking at pictures of the world that we came from. As if he were seeking a personal trail back through time. As if he knew that his life would not belong here for long.

I also would mention his compassion and inherent empathy. I don’t ever remember his personal ire rising at anyone. Well, there was that one young man who charmed away two consecutive girlfriends, and those cops in New Jersey once… But more than most, his whole life, Jesse willingly, even automatically, (but never haphazardly), stepped into the perspectives of those around him – melding and mending the world from his large heart. He let me be me completely. That seems like such a small thing, but think about it. He allowed all of us to be perfectly who we are.

And one more encapsulation… born from this, and the core compass of an irregular and spirited being. Jesse allowed Jesse to be perfectly who he was. His self-possession was astounding to me. From the first, he lived into his unfolding with one part surety, one part self-humor, very rare glimmers of self-angst, and a boatload of flair and wit. He might have been too sure of his intellect at times in his coming of age, but he was formed by humility at others, and he never needed anyone to show him how to be Jesse. That is rare.

In the end, his courage was rare as well. I don’t know how he found that courage. There was even extra for me. I know he wanted to live so very much into his independent, adult life. I know he wanted friends and a wife and children, a life of focused challenge and beauty all around him. I’m so sorry not to have seen that. But his body crumbled outside of the range of being, and he fearlessly left to encounter all the realms of consciousness that he gallivants in now. He is always expanding, always beside us, always Jesse. I can’t go on without him – without this compass bearing.

And I could not have survived this unbearable loss without him either.

for those who grieve

"...I realized something then, which is

that you can love beyond space and time

and that when you love beyond...

you enter into a world where everything opens

onto

beauty

and

glory."

from a Feather in Your Heart

Andrew Harvey

~

something...

something about summer's ending

something about seeing Lisa at the pond

without him

something about knowing

the headstone

is coming

resurrects

the great loss

of this fair-haired boy

~

Commencement

In two days I will graduate from Northfield Mount Hermon school, after 4 years, 3 of which I attended with Jesse. My last semester here, which began with losing Jesse, is now over, and I'll no longer be a part of this place where I got to know him. Almost exactly a year ago, he walked the stage in his cap and gown, and got his diploma, just as thousands have done before him, and I and thousands more will do. I always assumed that he would be at my graduation, because one expects their dear friends and family members to be there. Jesse was a part of my NMH family, and although it isn't true, it feels like I'm severing one more tie to him. Even after an entire semester, I haven't been able to come to grips with the fact that Jesse is gone. It just seems oppressively unfortunate that he is always going to be somewhere other than me. As I say goodbye to people who I spent so long with in school, and who I may never see again, it reminds me of this- unbearably sad that we are all going to scatter and live and be in places other than NMH. I miss Jesse terribly still, and I don't expect it will ever get easier, only more and more familiar.
Best wishes to all,
Ruth Shafer

Relay

Hello all.

Ed asked us to do things to help fund cancer research. I have joined a Relay for Life team in Middlebury and we are attempting to raise $24,00 in one day, which means we each need to raise $50 by tonight.
. . .
My Relay Web Page

{Edit:] Thank you to all who contributed. The relay went well. We raised well over $100,000 dollars for the American Cancer Society.

Many blessings,
Emily Jacke

I wanted to write a story from my life to submit to an upcoming Chicken Soup book on miracles, and this is what came.  Lisa asked me to share it here as she returns to this site often to read all of our words...

the Sea of Miracles

for Jesse and Susannah

by Kelly Salasin

"And as to me, I know nothing else but miracles." Walt Whitman

I want to write about miracles, but I don’t know how. There must be an outstanding event from my blessed life to retell, but no single moment splashes up for attention. Has my life been without the miraculous? Indeed, no. It has been so flooded with miracles that I cannot distinguish a single one... until I take what comes, and oddly, this is it:

This past winter, a young friend of ours died of Leukemia. His name was Jesse and he was 19 years old. My family and I rode out the month of December with him in prayers and rituals and tears.

Tucked under our Christmas tree this year was a book entitled, The Way WE Work. Driven to comprehend blood and bone marrow as Jesse’s deteriorated, our bedtime reading ritual was heightened. We delved into a greater understanding of this amazing human body, and I was struck- STRUCK- by how absolutely miraculous our bodies are. In comparison, the miracle of Jesse's recovery seemed a simple request.

When we got word, just after the holiday, that "Jesse wasn’t going to make it", I wondered about prayers. So many had been sent from so far that I didn’t understand how they could be left unanswered. Were they gathered there outside the hospital doors, unable to get in? Did the Critical Care Unit refuse them? Did God or Jesse have some other unimaginable plans?

My son Aidan, age 8, couldn’t bear the news and ran up to his room sobbing. We all joined him on his bed in silence until he lifted his head from his pillow and demanded, "How can they be sure Jesse's going to die?!"

In the face of all of our bright hopes, it was heartbreaking thing to answer. "Death is like a birth," I began, tentatively. "There are signs that a baby is coming and there are signs that a body is ending. No one can be certain of the exact time, but they know when it is imminent."

Through all of our tears, I whispered again that death and birth were- both- truly miraculous; and though immeasurably painful, it was also quite beautiful that Jesse’s mother and father would be with him when he left this world as they were when they welcomed him into it.

As is the Jewish custom, friends and family sit with the body after death until the time of burial. At a hour when we would typically be heading up to bed, my family walked outside into the hushed snow and drove twenty minutes to town. We arrived at the funeral home just before 9:00 under a bright full moon and took our place beside the pine box that held Jesse’s body. We brought Rumi and lullabies and sat in sacred silence before turning over Jesse’s care to his grandmother and aunts.

It was a magical night, holy, like Christmas Eve, perched as it was on the threshold of life and death. The next bitterly cold afternoon, we stood atop a mountain and buried the beautiful box with Jesse under the earth. Shovel upon shovel upon fistful and tears. Aidan snuck a clump of dirt from the pile and brought it home with him through the deep snow. We lit the yellow candles we had burned for Jesse each night since the New Year; and this time, we let them burn out.

Emptied in our grief, we did not find the one shining miracle we had wanted; that one defining moment that could shape a story so spectacularly such as this for you. It’s the story I had imagined retelling... the one where Jesse recovers and goes off to college like he dreamed. Because of prayers. Because of a miracle.

Who knows how miracles work... when they come and when they don't! Isn't it the job of a miracle to fit our expectations?! Aren't miracles measured by specific outcomes, or is it by something else... by their effect, maybe?

If the latter is the truest account, than Jesse’s life and Jesse’s death were one and the same- miraculous.

As I type these words this morning, snow falls and falls and falls upon soft spring roads. Pondering life through my tears, I don't know where to end this unlikely tale of miracles. Until the phone rings.

It is my sister, three thousand miles away, announcing the birth of her daughter, Susannah.

Another miracle splashes into my life...

hey* i love you.
travel well darling boy.

may you be filled with love and kindness,
may you be well,
may you be peaceful and at ease.

may you take care of all of us, who are still struggling.

* exhalation.

Helping Others

This is from Jesse's Dad.For those of you interested there are of course many ways to help medical research to find treatments and cures for leukimia.Try to find ways to help others so that the good things that Jesse would have done can be still done by those who cherish his memory. Here is one link that is maybe a way to help others:
http://cancerfriends.dartmouth.edu/index.html

J. Julius:

We are One. Your passing into the simplicity of everything has shown me this. We have always dwelt within each other, and so none of us are ever truly apart.

http://blackindiastains.blogspot.com/2009/01/j-julius.html

With love,

Emily Jacke

NMH '08

for lisa...

“Who is the you in YOU?”

Well it may be too soon, or not soon enough.

I feel compelled to send a short missive here to the light of my life. Jesse! How could I know you? How could I even begin to believe that you would not accompany me to the end of my days? What a sure, pure assumption that you would be there at my passing some forty years hence. My own death witnessed by your child's heart, instead of this awful reversal of the normative. That you would mark my life from a pure, real place of knowing me as your mother... simply offered for the repayment of shepherding you through. How could I see this coming?

As mother, as friend, as abiding coequal through your days and into the full realization of the “You in you”. I began to ask this question recently so you might also ask and come to some place of deep peace. While you battled.

“Who is the you in YOU?”

In a perfect world we have untold years and generous experiences to arrive here. Through youth, arrival at identity, rebellion and formed community, (though yours was always polite and intrinsically born of self-respect and therefore respect for others), structured scholasticism, inquiry, career, family, spiritual evolution, wisdom and a timely death – all the markers on the road map of life. Yet yours was truncated in your short, blazing shot at the stars! Ninety years wrapped up into twenty.

“Who is the you in YOU?”

I feel now like I was always a mystified observer and you came in knowing the answer to the question above. You are teaching me now. In the painful days culminating in your passing, I am now sure that you came in an old soul, because your prior arrangements somehow arrived at the basis that your long life would be condensed into this short, elegant, self-realized burst of flame and adamancy. YOUR LIFE. No doubt. No question. No boundaries. No negotiating truth for the long drawn breath of mendacity. You really came here to live and let THOUGHT be. You really showed up my boy!

“You are the you in YOU!”

So while I feel gypped now, and in my own spiritual emergency as to how I’ll carry you deep in my cells, forward, alight on my shoulder as guardian of my mindfulness – I am arriving at a certain peace. Slowly. This highly polished mirror of the effect of you on our shared community will fade to a feathering. Naturally so. Who will be there to witness you thirty years hence? How will I live my own truth without you by then? And yet no regrets. We did a perfect mother and child reunion. I have loved you more than life and been profoundly repaid by life. There is nothing amiss here. YOU conspired to inspire, and you are melded within me. The you in YOU is not a (?).

I was there at your passing and I can attest that you arrived.

Deepest peace Jesse. Look kindly on my travels...

Love beyond love,

Mum

A snapshot of Jesse Lopata

A snapshot of Jesse Lopata from someone who did not know him well but was always impressed by him and had wonderful conversations with him on multiple occasions over several years. ~ Richard Epstein

As read at the celebration of his life 1/10/09 at the Brattleboro Museum & Art Center


(and amended 1/14/09):


Unconventional Dresser

Unconventionally Handsome

Curious

Attentive

Abstinent in Generational Prejudice

Unpretentiously Polite

Picture Perfect Posture

This is a letter Jesse wrote for me in late October on his beloved typewriter. I have transcribed it here absolute verbatim, with all of his (intentional) typos. His wit, articulation, loveliness and grace shine through, and I thought that perhaps it would be appreciated by all of us who miss our dear Jesse. It makes me smile every time I read it.

Dear Kiah, 28 October, 2008
I think you should know that usually I do not compose messages directly on my new typewriter, but rather compose first and transcribe later so as to create a more perfect document. You, however, have already reached perfection on so many planes. I began to worry that this letter might arrive by air-mail, and in doing so bore you, for then it would only be more perfection on another plane. So there may be occasional XXXXXXXX capitol X's just like these and perhapsI willmiss the occasional spacesor add them withvimmer and verve. However, I may also just write things like howererh which only adds a bit of breathyness. Do n't you think? You should also know that your letter has jumped ahead in the queue. Some would call this cheating.
Emily and I have received your card. Did I ever tell you about the waspy, blond, aristocratic boy named, of all things, Cassius Clay? He was a remotely interesting person, but mostly just for that reason: I am wondering now, why boxing no longer seems to be as important in our culture.
My mind is wandering. I suppose this in inevitable, as I have recently ingested a delicious cookie XXXXXX from, of all places, your current location, CALIFORNIA. As you may be able to expect, it was a very special cookie.
This weekend I went down to the city to visit several friends. I went to a concert inwhich one of the pieces was entitled "Dix Minutes du Cent Metronomes". This was, I assure you, a literal description of the piece as well as it's title. 100 Old Fashioned metronomes randomly ticking away in a square of light on the stage for 10 minutes. In the lingo of classical music that would be referred to as minimalism.
It snowed again here today, but nothing stuck. BY the time you get this letter Halloween will have come and gone. So I can in all fairness ask you how your Halloween was. What did you do to fete the spirits? (Ice cream break.) Yum, coffee heath bar crunch my favorite. Are there Ben and Jerry's stores out there? I always used to get a kick out of seeing them while traveling abroad.
My mother will be going out to the bay area in March, and if I can convince her to buy me a plane ticket I'll be excited to come visit you. Regardless, I'll be seeing you in person way before that. We should have a crazy Hanukristmakwanzaka dinner when you come back. Either that or New Years, if you will be home that long.
The tone of the light outside my XXX window has changed now from autumn to winter light. Bizarre that it will be November in only a few short days. I'm starting to find it easier to let my days flow without feeling guilt about a lack of accomplishment. I've concluded that if I can read even half the books on my list for this year it will be far from wasted time. I'm on to Joyce's "Portrait of the Artist..." right now. Though much of the Irish historical references are obtuse, the sensory based stream-of-consciousness descriptions of childhood are perhaps even better than Proust's. Than again, this comparisonXX may be rather unfair for I have only read the frenchman in translation.
I just noticed that the last copyright date on my new typewriter is 1923. That makes this beast rather old wouldn't you say? IN fact, I'm rather amazed she's still working as well as she is. I guess they just don't make em like they used to.
Alright, off to run errands now. Emily and I are making French Onion soup for dinner tonight. There are a few aspects of the turning of the seasons that I prefer to the excuse to eat hearty food again.
Write again soon. In my next letter I'll try to get some pix of the apartment.
Love,
--J. Julius Lopata

Swans

Dear Jesse,

I took a walk this morning with Lilly, out along the canal. Looking out over the sparkling water between banks of snow we saw a flock of dapper ducks skimming the current, and then, rising beyond the curve of the road and the grey guardrails, the elegant, white necks of swans.
We stood and watched as they moved in and out of the places where the sunlight made the water yellow and white, arched and twisted their long necks, preened, snapped and snorted, all the while softly rustling the water.

Twenty four swans and canadian geese and green-collared mallards.

And I thought of you, floating on water, rearranging your appearance, making little sounds to tell us, "I am with you. Let us look at the world, now, in the sunlight, amidst the snow. I am in you and outside you and around and through everything, everyone, every moment. Let us look for each other in the world, in the sunlight, amidst the snow. Let us love the cold crackling noises of feet and the warmth of company and the cold fog of breath on the air. Let us live in a new world, where there are swans in January: great, paddling white birds with wings, amidst mountains of powdery snow, floating on water between the high banks where you stand."

Emily Jacke