Showing posts with label dying. Show all posts
Showing posts with label dying. Show all posts

Wednesday, August 12, 2009

Cancer, Coffee and 'What defines A Life?'


Sunday, August 2, 2009

The Art of Living:

“There are moments in time that are meant to be held
Like fragile, breakable things.
There are others that pass us, you can't even tell
Such is their grace and their speed.
And this one is gone in the blink of an eye...
Do you ever jump in without closing your eyes...?”

---Mary Chapin Carpenter

Some thoughts, musings about Life and the purpose of Life. What ‘defines” a life, In the making, creating and living it?
And too, Are we really ‘Living’ given the choices we make every day -- Are we squandering our time; stagnating, unmovable, out of fear, grief, or past experiences? Indeed, are we allowing ‘something’ or ‘someone’ to steer our course and make our way, when we know we should be DOING our own steering and DOING more?
Are we following our dreams- living life to the fullest degree possible? Are we utilizing the tools necessary to
create, mold and shape our lives, our being, Into something worthwhile, purposeful and glorious,
even when the road before us seems ominous and ‘just too hard’ to change from that what we know, are familiar
and comfortable with? Also, are we making certain that we are not taking for granted this glorious Gift;
The Gift of Life, living and time?

A ton of questions... to be sure, but pertinent and the answers are as unique and individualized as are each of us.
No, Not a simple task but the alternative, not having and appreciating life and being open to all of it’s possibilities,
is more bleak, with far reaching implications of dying a little, every day, BY OUR CHOOSING. What does our future hold? Indeed, it does beg the question: “What defines our life, who we are and what we want and are doing with our time?
Are we willing and ready; “to jump full in” (without blinking an eye) when grand, healthy and life changing moments and people: The “fragile and breakable” ones present themselves and invite us to join?

It seems that whenever I get “stuck,” muddled in the spaces in between or find myself at a crossroads, as I do today,
I cannot search long and fast enough to find truth and crucial answers. For better or for worse, I usually find the best and most applicable answers in something that my deceased, younger brother, Scott has written.
For those who know me, this should not come as a surprise. For thirty-eight years I loved, listened to, cared for, adored, honored, appreciated and stood in awe of him;
His accomplishments, his beautiful and self reflective mind and even more expansive heart.
Scott was unique, complex, brilliant; a true genius of sorts. He was also loving, kind, gracious, wise, a good friend,
a beautiful son, a grand and favored brother, a person of balance, theories and an eloquent writer.
These words barely begin to describe and define him, Scott’s life and all that he taught and shared with me and hundreds of others. He was my best friend, my soulmate, the person I enjoyed being around the most.

Is it any wonder ‘why’ I would not continue to seek and learn from him? Yes, he is dead, his physical presence is gone.
I cannot call him on the phone spontaneously, to check and see how and what he is doing. If he has written a new poem? What and all he is thinking about and creating. A huge void, an emptiness remains in my soul and all that encompasses me. Scott has been dead and gone three years this December. Not much time, really, especially when I consider the amount and quality of time we shared; our silly rituals and traditions at Christmas time, when he would always come home. We watched the movie: “Home For The Holidays” at least twice every Christmas, laughing, to the point of almost passing out,
grinning from ear to ear, because the characters in the movie reminded us so much of our own family and similar quirks
and dysfunction.

The emptiness creeps up on me, when I travel to Southern Utah, a place Scott dearly loved and where he sought refuge
and inspiration. When I purchase a sparkly, new fountain pen because of our shared fondness and appreciation of them.
“The Mighty Pen” was one of his tools of creation and beauty. So many memories of my life, are, and will forever be, intertwined and linked with Scott. So as I began to write about life, it’s purpose and what defines a life, I chose Scott as my exemplar. I watched, waited and grieved for the nine months he suffered and fought against the beast of pancreatic cancer. The pain on his gray and often ashen face never left after his diagnosis. It was and remains, the most horrific, painful, heinous and darkest time of my life: Watching my younger, brighter, gifted, talented and beloved brother die, bit by bit, everyday,
as the cancer and chemotherapy ate away at his beautiful life, dreams and body.

This is not meant to be maudlin, except that it is and was. Hopefully it will serve as a basis from which I can begin to write
and express my feelings, thoughts and wonderings, in context, about “Life,” it’s meaning, purpose and definition.
Oh how I miss him- everyday. Not a day goes by that I don’t think of him, the fond memories, life lessons, the bond,
and great and wondrous love we shared as brother and sister and dear, beloved friends.
Sometimes I “get a catch in my throat and I just swallow hard until it leaves me,” Other times, I allow the tears that
are always close to the surface, to flow freely, uncontrollably down my face and neck, yes, a tear streaked salty face,
full of of love, missing and honor.

I will begin by sharing one of Scott’s posts from a journal he kept, a blog and daily account of what he was feeling and experiencing, what it was like for him to face death: “Head On” and continue to LIVE a life full of purpose and meaning, in-spite of, maybe even because of, his knowing that; “soon I die.” Scott lived more in his last nine months of mortality than I have lived in my entire 51 years. So, of course, his definition on “what defines and makes a life and a sense of purpose,
is overtly significant, important, descriptive and noteworthy.

And yes, Scott loved coffee.

---Sheri Swaner


Or, It’s All About Getting Started:

“It is all about Making coffee.” By Mr. Jones, Scott swaner www.donotgogentle.blogspot.com

Revisiting Scott's blog, on July 22, 2006.
Do Not Go Gentle — Poetry & Cancer, Life & Death

[Some thoughts about pancreatic cancer, pancreatica, metastatic cancer, dying young, untimely death, quality of life, then poetry or "a making, a creation" — & what can be left of it while coping with fear and grief and dumb fate; trying to make a life, with what seems like little left. Family & friends, love & loss.]

Saturday, July 22, 2006

7.22.06, Brief Indecision
“Walked into the kitchen, which is still shaded out because of yesterday's heat — and what they say will come today as well, and took a left turn, walked about ten feet to the far wall where I stood facing the sink, coffee maker, coffee grinder, rice maker, dish rack. For a brief moment I thought about what Frank asked me once, or I thought rather the object of his question, at what point when you get up every morning do you think "Ah, fucking cancer"? Today I woke up and it was already woven into my thoughts from the left turn, the ten feet, the facing of the morning machines.
Cancer; cancer, schedule, calendar, how long, tasks, limited range of drugs, more cancer, less calendar . . . for a moment that's all I thought, not consciously but still that's what I woke up with. Then it hit me, "It's simple. Just make coffee. That is clearly the answer to everything." Just like in Home for the Holidays when Holly Hunter and Anne Bancroft are together talking ‘family talk’ in the kitchen at 3 in the morning, what does mom do? She puts on a pot of coffee. Every morning, then, too, that's got to be the same answer. It's Pascalian, ". . .kneel and move your lips as if you believe..." the same behaviorist principle. You'd be surprised at how much of life's routine will simply automatically begin its motion, just start to move by itself, once the beans are ground, cold water filled in, and the switch flipped. It all starts. It's all about making coffee.
This is how the terminal psychology seems to work, if I am in any way representative: News from the re-staging wasn't really news, in a sense it was information I was waiting for but already knew, information I knew would be coming, at some point; the only remaining question was precisely "when will it come?" "when does the cancer pick up and start to move again?" Those are the basic stakes, point being that it shouldn't have come as much of a surprise. But the last re-staging brought unexpected good news, and so this week, we, I at least, thought "Hey, maybe we'll have one more piece of good news. Just one more."

The psychology: You receive the shittiest news, you absorb and process it, then you begin to live your new life with this knowledge. The finite amount of time ahead of you, the juggling of projects within the mind indefinitely, the procrastination with little consequence, and simply taking every day for granted and people for granted and the concept of "tomorrow" for granted, all of that is wrenched up, turned over or around, and slammed down in some disfigured form. You still have to make use of it, just that now this thing, it is misshapen and unfamiliar almost. Now, the re-staging restarts the whole process, but you've been through it once before so that this version is not quite so baffling, the tunnel vision, heavy crushing feeling descending on your skull, the inexplicably loud heartbeat, and the gradually collapsing vision of the whole room around you — all this happens again but not so severely. This time you know it won't beat you, you're not actually worried you'll pass out and wake, when your head cracks against the exam rooms white linoleum floor. This time there's more anger than surprise. This time you're faced with how cancer doesn't give two squirts about 8 weeks of rest or healing: it will move on. This is all just to inform you. An expensive way to inform you. You've been playing on your winnings already. The dice have been rolled in The Big Casino, is one message.
Second message: Your winnings are about gone. You realize, yes, that soon I die.”-- mr. jones
To illustrate, I’m including part of one of the poems that Scott wrote during his fight and life with terminal pancreatic cancer. It serves as the premise, the meaning of a well lived life of defined determination. It is also copyrighted. ; )

“Life, the Crash Course Version”

“Death opens vistas through its immanence. Widened
Vision and broadened possibility both result from the horror
Of the approach, the horror. Every possibility existing gossamer,
Hanging by delicate threads of if, comes to the fore of when-
Pain’s freedom is finally achieved.”

--SHS


This particular post of Mr. Jones, was originally written and posted
On Friday, July 14, 2006.
He passed away a little over 5 months after writing this.
I am re-posting it for several reasons. First, because it is one of favored writings,
Second, Scott could have written the theme of this post at any given time in his 38 years.

Scott lived! Scott Lived, each day of his life was purposeful and determined.
A good lesson for all of us, no?
Certainly a lesson that I need to work on; a lesson he reminded me of,
Either in word or by how he lived his life; Honestly, with conviction,
and determination.

What Defines This Life, What defined Scott's life?
Most of the answers are found within this post.

I miss you, Scott.
Sometimes more than I can bear...but then I remember what you asked me to do;
And I try harder. The missing never goes away, though. Ever.

Love,

Sheri

7.14.07, "What Defines This Life?" You Ask By Mr. Jones aka Scott Swaner

*Franky Scale: Why just one? Started about 6, dropped to a 5 for a while till I did some pharmacological adjustment. Ended up close to 7, the day was good, saying good bye to Ms. T over crumpets and books at the Left Bank, then with Mme. X for a dinner of bar food.

*Dearest Prof. Jeong, Yonsei University,

First, I wanted to let you know that this is the right blog. I was so glad to get news of you recently, or more accurately news that my fucked-up news had reached you. And I was moved by and can imagine your reaction. It's been too long since we've seen each other and I hope, as always, only the best for you. I miss being able to drop in and discuss aleatory Marxism, Althusser, and modern poetry. Whether the category "lyric" is salvageable let alone salutary . . . figuring out what Hwang Jiwoo is talking about . . . So much there left undiscussed. Also, I'm sorry if the pseudonym threw you off track, my nom de guerre, as it were. For professional reasons I withheld my real name initially and the "Mr. Jones" trope, though I haven't yet discussed its why's and where-fore's, has proven useful in unexpected ways. Let's talk soon, I'll try to email.

*There is a certain clarity I possess, or feel possessed of these days, only occasionally, usually around this hour of twilight — not meant to sound either Romantic or mystical, just noting the phenomenon — so at this time, when the combination of hunger / fullness, pain / non-pain, nausea / calm, etc. settles down below the most obvious level of consciousness, then I feel my fingers freed up (odd metaphor of the keyboard age), and a certain sense of vision accompanies this: not Blakean, or Ginsbergian (after Blake) but more Spinozist, it's almost scientific, that of a lens grinder, someone who is thinking of visual theory at the same time as rhetoric. I hope it combines to produce something lucid or pellucid even or even merely reflective of the clarity. Gibberish? Could be. Oxycotton? Could be.

*An Anonymous writer posted a few questions on the post called
"What Cannot be Said" from two days ago; it ran as follows:

"Question to consider (or not?)
[a] what if all questions are the wrong questions at this moment?
[b] it isn't as simple as what to do with your time;
[c] rather, what will you do regardless?
[d] not what to do in the time left, but what would you do anyway, given one week or one year?
[e] what defines the life you have chosen?" [I've added the letters for easier reference.]

The final question #e I can answer with some confidence, what defines a life, whether chosen or fallen into,
Is always the same it seems: it's action, the practices of everyday life, movement, activity.
All the talk and hyperbole, all the promises and the efforts, all the intentions and the apologies,
And finally, all the ideals and the general wishes or desires — none of it means more than a passing comment in a dark bar.
In the end it is part of a failed seduction. In the middle and the beginning, too, it's nearly meaningless, however, we can more easily kid ourselves, succumb to an ideology that allows us to remain productive.
In the end, after all is said and done: It is only the book that is published, printed, or passed around and read at least, is the book that counts. All the ideas for other books, all the drafts (in the mind) and sketchy notes, disorganized notes don't count.
The “Other” ideal profession doesn't count, only the one you actually did. Me, professor, modern Korean literature, poetry, aesthetic theory. Like it or not, that's what defines me, it's where I've come. It’s what I DO. Most simply put, I can't help but think more and more surely over recent years and especially now, that only what one does is what defines one's life.

As a brief interjection, these questions have all been covered on the blog before. In fact, they're nearly the primary philosophical or psychological reason for starting, for figuring it out. That said, I'm glad they're raised again since revisiting them now and then is always a good idea. Too, things change quickly in the Big Casino.
The roll of the dice, the hand you have been dealt...
(And too, also, it's good to have comments to engage with now and then on the blog.)

Question #d is, to put it rather directly, not relevant. Not anymore,
not to me during this period; the knowledge of a foreshortened life.
The meaning of all activity has radically changed for me since I was introduced to terminal cancer, except to the extent that I think of the act and action as described in the paragraph above.
To ask what "I" would do "regardless" (#c and #d) of this situation means to ignore this situation;
One would have to confront it ‘head on’ and then decide to live in defiance
of its reality.
I think that's somewhat counterproductive, especially considering the numerous epiphanies the experience affords.
So much new insight to be had from the “2x4-across-the-head” nature and thud of this new knowledge;
That not only am I mortal (of course) but that my mortality has been radically foreshortened into a number of months.
I'm supposed to be able to count them on both hands, if I’m lucky.
(The timeline now, based on admittedly less than ideal statistical averages, in fact puts down the number of months like this.) Finally and practically, I probably would not be concerned with writing a memoir currently without the news.
Life's obligations would push all that aside.

I suppose the latter two questions addressed would be quite on target for someone at home with eternal recurrence, someone unquestionably not possessed by the notion of "the grass is greener," someone who had made all the "perfect" life choices and was either in unquestionable love with her work or independently wealthy. Wouldn't it be nice — sorry, not be sarcastic toward anyone who's so comfortable in their skin (and / or loaded), it's just never been me.

On #b, looks like I screwed up my numbering.

On #a, I wonder the same frequently: do they need to be asked? The facile Socratic retort doesn't apply I think; and yet if there is ever a time to do perhaps this precisely is the time . . .?
One thing for sure, and no one every said I wasn't picky about language, but the logic of "at this moment"
Does miss the primary fact of what it means to be confronted "prematurely" with death.
The Moment becomes This one, for better or worse.
The next moment may never come.

And how can I resist the return to aleatory Marxism, above, to note again that
"The lonely moment of the last instance never comes"?
Perhaps it's time for me to reevaluate that proposition considering my new context . . .

Posted by Mr. Jones at 7:15 PM

8:25 PM, July 15, 2006

Sunday, March 29, 2009

Words From A Friend Who Watched his Best Friend Die from Pancreatic Cancer

Reposted from Scott's original Post.

A Guest Blog by Frank Chiarella,
One of Scott's dearest friends, and certainly one of mine.
Always and Forever, Frank, I love you.
You offered and Gave Scott unconditional love and Friendship
from the time you met him until he died.

You also provided my Mom and I--
A feeling of peace and safety.  I am so sorry about the recent death of your father.

You hold a special place in my heart--
Always Have and always will.

Sheri



Tuesday, August 22, 2006
8.22.06, Guest Blog. Melancholy and Mystery of Family - A Salt Lake Journey by FGC

[Hey. Here's going to be a Guest Blog from Frank, from the Utah trip last week, a few days old but it's the process of digesting and the digest of processing that was required. Frank also gave it to me two days ago and the remainder is my process of putting off a bit, as is my wont. Today's Franky Scale is an 8, physically pretty good, emotionally very good, a visit from the Disenchanted Princess begins. Also, Mme X had a momentous day that I'm happy about and glad to share part of, so these things add up. Huge congrats to you X. Now, I'm just going to check some edits on the post and will be back with it shortly, tonight. I'll leave this up for most of tomorrow, and if I come with a post of substance I'll put it up at night. Peace.]

Guest Blog:

The Melancholy and Mystery of Family – A Salt Lake Journey.

Traveling across the country to visit a dying friend sucks. Never mind the crowds, crying babies, shoe removal and metal objects at the security points. It’s the anxiety of seeing your dying friend and the fact that you are fucking helpless to fix him. My visit with Mr. Jones was not my last precious moments with him but it crosses your mind. Is this the last time?

My visit with Mr. Jones and his family was bittersweet. When it comes to talking about families and the nuisances between all the players –well…. People in glasses houses, if you catch my drift. Three older sisters, a saint of a mother, a nonexistent father, partners, nephews, beautiful babies, the best fucking carrot cake I still think about, and the ubiquitous drama that exists between all families. A friend once told me spending time with families is like being around fish. After three days they start to stink. Amazingly,
It was five days and the fish remained edible.

We all cope with loss differently. I tend to cry a lot. I think about the living Scott and I have shared and put the impending death of my friend out of my mind until we started to talk about what to leave behind and executing a will. Then it hits you. That is living in the now, the harsh reality of losing a loved one, family or friend. It’s reality punching you in the Adam's apple, you can’t talk or even breathe…. So you just listen. Listen to your friend – Always.

The drama started before I even arrived at Sheri and Stepheni’s. The details are hard to grasp – almost unbelievable, and you wonder what the fuck was the person thinking. So I listened and listened more, digesting the events of earlier that day that I wasn’t around to see. A conflict of sorts between Mr. J and someone close to him. We all cope differently – Right?
Mr. Jones manned up and settled that one.

I spent hours with Sheri and Steph, and there was great pain in that too, the impending unbearable loss of a brother who may be put on a pedestal but I have to say… rightly so. I stood under a full moon with a grieving sister who no doubt loves her brother and we tried to make sense of the senseless.

I visited Stepheni at her office to steal her wheels and met her coworkers,
Who all knew Mr. Jones from this blog. The palpable concern and genuine emotion from all of them was there too; more coping skills and support from distantly related, somewhat anonymous blog readers, who were in the midst of a dying cyber celebrity.
Greetings and gratitude to you guys at the Data Center from Mr. McMahon,
(ask Steph to explain that one).

The big Sunday family get together was marred somewhat by the lack of some family not posting, showing up, on what will most likely be the last time you will all be together…at least with Scott in SLC. I can’t remember the excuse given for why “they” did not come, that is something they will have to live with.
Sue and Susan were fantastic hosts and coping skills were again ever present-- with good food, conversation, and stories; and for the few times when the harsh reality of Mr. Jones’s condition slipped in, I was aided with help from my “nurse” who made the name “Collins” proud.
To all Scott’s nieces and nephews you were huge to come and show your uncle how much you care. In the end it is your family that will always come through. After the party, Mr. J and I paid our respects to Daniel at his grave and he reflected on his own loss, losing Daniel. The mystery of his nephew’s life and death still haunts him. The sun began to fall and cast long shadows on the tombstones as we left, That moment will remain with me forever.

Finally, how will I ever forget looking into the eyes of a grieving mother struggling with the loss of her only son? Nadine, you will always be in my heart. If the miracle you want happens I will sign up with Mr. Smith. Your bran muffins and carrot cake are made with huge love, and as I walked by the pan of carrot cake and stole another fraction of your cake, each time I realized food is yet another coping program. It is also comforting, knowing it was made by you with love. Nadine, I love you for your honesty and admire your faith.
More importantly, thank you for giving me the pleasure of knowing your son.
I hope to one day share all your infinite wisdom with my own family, along with my many memories of your son.

Sheri and Steph* – thank you for your hospitality again – I love you both!
Mr. Jones….. I am always listening. NO pain please! Do what ever it takes….but please…no pain for you.

FGC

Posted by Mr. Jones at 10:33 PM



2 COMMENTS:

Slarry said...
Dear Mr. Frank:

I am a grieving sister and you, the loyal and ultimate ( grieving) friend. We were as one, under the full moon that night; our tears flowing freely, taking solace in each other’s company. Completely unified in the knowledge, that he, Mr. Jones, is unique in all the world. The thought of him not being available to learn, love and laugh with, the loss of Scott--- the most unbearable pain we could imagine. 

You are like my “other brother”--
such fine and similar characteristics; characteristics and gifts that Mr. Jones has always freely, unconditionally provided and offered me: feelings of safety, a sense of calm and stability, keeping me grounded and the warmth and comfort that can come, when one feels understood by a sibling and a loyal friend. I thank both you and Scott for that-- for years of making me feel understood and loved.

What a gift you are ... such joy, comfort and renewed strength you brought with you from New York, showering it on every one of us. For Steph and I, you truly are our favorite. Not only a term of endearment that we have always said concerning you; you are the real deal, our dear, dear friend, and for me personally, like a second brother. Thank you for that. We love you more than we can articulate, probably more than you know.

Your genuine attentiveness, concern and admiration towards our Mother, probably added years to her life. I want to thank you for that and more. Sometimes the one’s who deserve our admiration the most, the people who teach and love us unconditionally, get thanked less often. Thank you for appreciating and enjoying Scott’s Mom, my Mom, as we do. She is a Saint and does make the best Bran muffins. But you also scored a full pan of carrot cake as well. : ) That is huge, my friend.

Other than mine and Steph’s love and gratitude for you and how you have helped us through many emotional and difficult moments, I mostly want to thank you and acknowledge the great friendship you and Scott share. It is a thing of sheer beauty-- and helps this grieving sister, feel a little less anxious about my brother’s impending death. 

I try not to think about it-- try and stay present in the here and now, but the fact remains that my favorite person is suffering unimaginable pain and having his beautiful life, his beautiful mind cut far too short. This is where the senselessness comes, my trying to understand and believe that this is really happening. And it does bring with it questions about the meaning and purpose of life--- why Scott? Why a terminal cancer? He is the healthiest man I know. And especially, why my favorite person, the one I lean on and learn from the most? The one person in our family, other than our Mother, who has the most to offer this world.
I will never understand.

And to my brother: reading, hearing about and observing, at times, your level of discomfort, anguish and pain, is so harsh and unbearable. I hate the pain. I hate that you are suffering and that there is not one stinking thing I can do about it. I can’t fix it. But I am here and I can listen, always.

Thank you Mr. Frank for writing your third guest blog. For stepping up and having the courage to tell it like it is. The “no shows,” the absent and anonymous father--- but also, and most importantly, appreciating the greatness and unique impact that my brother has on others. Also, for the perfect example and a testament to true friendship. You are a class act, my friend. Selfless, and darn influential as well. You too, leaving your mark- imprints in the hearts of many.

You are huge Franky and we love you. Can’t wait to see you again.
This is not good-bye. My plan is to be wherever my brother is. So I will hook up with you there soon. Hopefully, there will be a hot tub for you to splash around in. I’ll try not to peek. : )

 Big, big love to my brother. And to Ms. X, I congratulate and celebrate you too.
Scott, you have some great and supportive friends. So loving, so loyal, so cool. But really, how could one not be drawn to you?
Don’t worry-- I won’t do the pedestal thing. It is just that I love and care for you so much and for so many reasons. You have been an unequalled gift in my life, equally as long. You remain so, and always and forever, will be my most precious. 


Thank you again, franky. And love you most and infinitely my brother.

 xo, Sheri


Give Gill, the Princess and Ted a hug for me.

8:28 AM, August 23, 2006
34DD said...
Wow! - it's hard to top that comment so I won't dare try. I'm just glad that Francis was able to write down his thoughts about the trip to see Mr. J - the stories have been spilling out all week. Thanks to S & S for taking such great care of my boy & your boy & to your mom who kept them well fed! Everyone needs a little comfort food now and then. 

Mr Jonsey - I'm psyched that yesterday was an 8. I hope today is an 11. No more pain. Please tell Miss K we said HEEEEYYYYY and give her a squeeze for me (wink wink :) oxoxoxo lot's of love and good thoughts from NY.


ADDENDUM: Sir Frank, thank you for this and many, many other acts of unconditional loveand Grace. Scott loved you so much- but you already know that. Please know that we do too. Hope this finds you well.  
Forever & Always, you truly are our FAVORITE! loves, Sheri and Steph*



* deleted. 03/28/09