The purpose of this Blog is to keep Dr. Jon's caring friends and loving family updated on his journey to recovery.


We truly appreciate everyone using this blog for updates. Sometimes as we repeat the latest news many times we forget an important update or treatment option and hopefully we can be more accurate and timely in sharing any news by posting on this blog.


Please feel free to leave a kind thought for Jon and don't forget to submit your email address so we can notify you automatically as this blog is updated.


Thanks for taking the time to check up on us...

With Much Love,

The Three Queens & Jester

Claire, Cate, Kathleen & Tim

   
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Wednesday, October 20, 2004
It's time to get moving




I think the pain of losing my brother is getting better. I don't think of Jon any less often, but rather when I think of him it does not hurt as much and I can actually smile. I remember his bad puns, the silly pranks we used to play on each other, the Cheshire cat grin he wore as you finally realized he had pulled one on you, and the quiet confidence he exuded.

That said... I have been thinking of ways to proceed with ensuring Jon's memory does not fade and the ideals he believed in are realized. I am not sure that limiting our charitable endeavors to benefit just one organization in one city is the best way to proceed. (Besides the folks at the women's shelter in L'ville won't return my phone calls) In our small section of the world we have made donations to the local women’s shelter in Jon's name, I donated some of his belongings in Louisville to Goodwill in his name, and I know that there were donations made by others to the women's shelter in Louisville in his name also. (Even before the address correction was posted!)

 

With broadening our horizons in mind, some of my thoughts are:

1. Start a charitable foundation.

 

2. Have someone tabulate the aggregate donations made in Jon's name so far this year. Use that as a starting point, then set a goal for next year to exceed that amount by a lofty percentage. (I did a small accounting  and have come up with rough figure of $1,225.00, this does not include any memorial donations made in lieu of flower or charity events)

 

3. For those of you who made donations in Jon's name please use the contact me portion of this page and email me the amounts (a close approximation is ok)

4. Potential names for our proposed foundation/trust: "Doc Jon's Charities” I heard more than once my brother referred to as "The Buddha Boy" so how about "Buddha Boy Charities" or "The Buddha Boy Foundation” etc. your suggestions are welcome and requested. (I did a google search with Jon's name and there is already a "Barnes Foundation")

 

5. Actually form a committee to steer these efforts. (Those interested please use the "contact me" link and send me an email.
 

I think the "Warholish" pictures at the top of the page need some explanation. Jon's good friend and running buddy Rhonda B. sent me a touching email about a charity run she participated in recently. She told me she attached a picture of Jon to her uniform and wore it during the entire race. That set my mind to wonder about a logo that can be reproduced on clothing, letterhead, business cards, posters, temp tattoos, and signage etc. So I took the picture from the profile section of the page and converted via photoshop to different variations that can be reproduced in one color such as those used in silk screening and offset printing.  (See how us Barnes' can take an idea and run with it?)  So please take a moment and suggest which if any pictures to incorporate into the logo and let me know your ideas.

 

Last but not least our family was blessed to have Jon in our lives and he was blessed to have all his friends and associates in his. We miss him so very much and we know you do also. Let's not let his memory fade.

 


Posted at 07:18 am by Jester
Comments (1)

 
Wednesday, July 28, 2004
Happy Jon Day!

I had a good Jon Day. July 27th is my brother's birthday. I was fortunate enough to spend it with Claire and her daughters Charlotte and Sheila. We had a home cooked breakfast, lazed around a bit, ran an errand or two, then met Lili's wonderful cousin Dianna for a lunch of Cleveland's finest corned beef. We then took a leisurely tour of the Rock N Roll Hall of Fame here in Cleveland. Afterwards we did a drive by inspection of some of the finer homes in the area then went for dinner at our favorite Italian restaurant.

It was an emotional day for me. Jon would have been 50 years old today and I miss him so much. Claire and the girls being here today was such a godsend to me. We had the opportunity to share our grief, our joy, and our wonderment at the man my brother was and the life he chose to lead even as he was ravaged by that terrible disease that claimed him.

The most vivid memories I have of Jon right now are his unyielding optimism as he faced his fate and how kind and considerate of others he was at the same time. I only hope those are qualities I would possess if placed in a similar situation. I honestly think if we had traded places, anger and dispair would be my response. I am not ashamed of my human frailties, more so I am amazed at my brother's ability to overcome his.

I think the best way I can honor Jon's memory is to make every day a "Happy Jon Day". I will strive to be positive in my outlook on life and to remember  being kind is  a measure of strength not weakness.

I love you Jon...

Posted at 06:28 am by Jester
Comments (3)

 
Sunday, July 18, 2004
We move on


This picture is from a calendar I made for our family, Jon's Birthday is July 27th


It has been a month since we lost my brother. Wounded as we are, we still go on and attempt to function. My words can barely express how much I admired Jon. Some say one can judge a man by those who surround him, if that is the case then my brother was a remarkable man. His friends and associates have been fantastic in helping my family during this painful time and have eased our burdons greatly. For that and so much more we are  grateful.

 

We have cleaned out Jon's house (with the help of the wonderous Claire, my new best buddy Stan, his nephew Douglas, his beautiful bride Peggy, and the always wonderful, should have been born a Barnes Girl Cate) Some  his books have been distributed and we have more to go. (Speaking of which there is a book with an note attached that said it was a loan from Nancy but there is no last name, would the real Nancy please use the contact me in the lower left hand corner of the page and let me know how we can arrange it's return)  

I have been attempting to catch up on things long neglected at my home and discovered a desk underneath a pile of papers in my office. My cats recognized me and we have a new member of our family. (She is a cute little callico named "Collage".) I even have captured 2 of the pesky raccoons that decided our attic was a nice place to set up housekeeping. (Don't worry they were released at a Metro Park near our home unharmed) Also for those of you who had the pleasure of being maimed by Sammy he is living in NC with our brave kid sister Julie. Claire and her lovely daughters will be here to celebrate Jon's birthday at Barnes Manor north and I have a few tours planned for them.


There have been the startings of a commitee to organize a Race in Jon's memory. We are hoping during the weekend of August 7th we can have a meeting to further this cause and get the ball rolling. I suggest we host the meeting at the Executive Inn East so yours truly can get his Hot Brown fix satisfied.

I have added a  new account to my aol. Please feel free to send any email regarding the race, any fundraising, or passing of books to: DocJonsRun@aol.com

p.s. I have the guest / greeting book from Jon's service and will be scanning it along with some of Jon's poetry to post up here.




Posted at 11:22 pm by Jester
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Tuesday, June 22, 2004
Cate's thoughts

Please find below the text of Cate's Eulogy for my brother and her friend. Cate became more of a family member than a friend to Jon as he struggled with his illness, he was truly blessed to have her in his life. We consider Cate one of the "Barnes Girls" as her selfless love and dedication to my brother and our family made Jon's illness and suffering less painful and distressing.



 If you have any thoughts or requests please feel free to use the Contact me in amber on the bottom left to send me emails, thoughts, or to request any of our family and friends contact information.



I returned from the hospice unit of the hospital knowing I needed to
begin writing my eulogy for Jon. For nearly two years, since his initial
diagnosis of peritoneal cancer, a part of me has always believed he
would magically be cured of this illness. In searching for some poems
Jon had sent me via e-mail, I read a note sent that day from Mary
O'Dell, a close friend who had lost her husband to cancer. She wrote
"This is a most important time in your life. Hang on and push through
it. It will change you forever."

Here is a poem she wrote that seems especially appropriate for Jon,
given his love of geology:

The Evidence of Things Hoped For

I bring them a geode
see no glimmer in their eyes.
Am I the only one who knows?

I forget my own experience
is not the world's.
Not everyone had hefted a warty sphere

knocked it apart with a hammer
and caught breath in the sight of gleaming mica
or rose crystal glow.

Then one steps forward
smiling his worn smile
and takes the bulbous lump in tender hands.

Like an unhatched egg or a heart innocent of pain
the geode holds a miracle never seen
unless it be broken.


Many of us here today do not have hearts innocent of pain. The life of
Dr. Jon Michael Barnes had left a deep imprint on our hearts. Our hearts
are feeling wounded right now by his departure from a life that feels
too shortly lived for the potential it bore. And yet, after merely 49
(or seven squared as Jon liked to say) years of life, Jon was able to
astound us with the magnitude of the impact he left on each of us.

To borrow the words written in eulogy for Walt Whitman, I will share
that ". . . he was above all I have known, the poet of humanity, of
sympathy. . . He came into our generation a free, untrammeled spirit,
with sympathy for all. He sympathized with the imprisoned and despised,
and even on the brow of crime he was great enough to place the kiss of
human sympathy. He said, speaking of an outcast: 'Not until the sun
excludes you do I exclude you.' His charity was as wise as the sky, and
wherever there was human suffering, human misfortune, his sympathy bent
above it as the firmament bends above the earth. . . He was the poet of
Life. It was a joy simply to breathe. . . He was the poet of Death. He
accepted all life and all death. He was not afraid to live, not afraid
to die. . . I loved him living, and I love him still."

Though some of you may be adopting Jon's sense of modesty in thinking me
gauche to compare our friend, colleague, and family member to a man as
talented as Walt Whitman, I challenge you to consider whether Walt
Whitman could have scored a perfect 800 on the verbal section of the GRE
as Jon did.

Jon had a lifelong love of learning and may have set a record when
completing his undergraduate education by having the most number of
credits. It wasn't exactly that he was fickle. It was merely that so
much fascinated him. He completed a degree in linguistics, but had
numerous credits in chemical engineering as well as geology. Fluent in
numerous languages and an avid learner of many others, Jon was always
intrigued with language.

In the midst of his official education, Jon also found a love of
experiential learning, which he practiced by way of hitchhiking across
the country, traveling to numerous overseas destinations, playing bass
guitar in a band, and working in and managing several upscale
restaurants. A connoisseur of words, Jon enjoyed a good pun and even
made one with the hospice nurse when he was in a semi-lucid state just
days before his departure from this life.

Jon's sense of humor was evident to all who knew him. His close friends
Peggy and Rhonda love to recount the time Jon dressed in a cat gorilla
suit or as the grim reaper to celebrate each others' birthdays as they
jogged through Cherokee Park. Jon was also comfortable when the joke was
on him. When Peggy and Stan hosted a Halloween party and told Jon
everyone would be wearing a costume, he dressed in drag, complete with
heels and fishnet hose, and arrived at their home to find everyone
dressed in typical civilian street wear. He conversed with mentors and
supervisors in his field as if there were no emperor's new clothes game.

And speaking of the emperor's new clothes, Jon learned quickly through
an experiential graduate school course in the group counseling process
that always being diplomatic and rescuing others did little to further
the group's trust in him. He perfected the art of direct diplomacy
through this classroom insight and his 11 years as a psychologist with
sexual abuse perpetrators at the Kentucky State Reformatory in LaGrange.

He did not compromise compassion with what he gained in direct
communication. During a discussion time at meditation group, he shared
the anguish he experienced over deliberating about the conversation he
had with an inmate about his very low chances for parole due to the high
risk factor for recidivism, meaning that Jon had evaluated that this man
was at high risk for perpetrating similar violent crimes in the future.
His main concern was the he had shown human decency to this individual
through his discussion with him.

Jon identified himself as a pacifist, a label he did not take lightly.
In fact, Jon may be in a small minority of individuals who can have
compassion for such sentient beings as spiders, ants, and other creepy
crawlers who others of us would quickly scrunch under heavy sole without
a heavy soul. Another intriguing aspect of his pacifism was that he was
an avid student of war, reading numerous books and articles on the topic
and trying to subject even his violence squeamish friends like me to the
hours and hours of video his father had sent him on the band of
brothers, a world war two airborne unit known for its bravery in the
midst of battle.

When Jon was first diagnosed with late stage cancer nearly two years ago
and given six months to live if untreated, Jon was burdened most by the
impact of suffering this would have on others. Much later, as the
disease had progressed, he and I were talking about his prognosis while
he was in the hospital. He shared that he had recently conducted an
assessment for work with a man who had lost his wife to cancer. He said
the man could obviously tell that Jon was also battling the illness. Jon
found himself identifying with this man's grief and loss and
anticipating the grief and loss that Claire, his close friends, and
family would continue to experience after his suffering had ended. He
said he had the easy job.

I remarked to him once that he was the most patient patient I could ever
imagine meeting. He said there are many things in life which we can
control and some we couldn't and that he was choosing how he responded
to his illness, which I knew included a moment by moment battle with
pain, nausea, fatigue, and inability to consume and digest solid foods
for the past four months.

His Hospice RN, Melissa Payne, visited him recently and said "Jon is a
peaceful, wonderful, gentle man. I could have listened to him talk for
hours. It was calming to me to hear him speak.
A close friend said of Jon that he approached his battle with cancer
with more strength and grace than anyone he had known.

He brought an air of lightness and acceptance to the meditation group
where Jon and I met and became friends. There he added the grounding of
ritual to our weekly practice. One of my favorite memories of his
facilitation was the day he taught us, again experientially, about
practicing maitri, the Buddhist word for loving kindness, with
ourselves. He gave us each a feather he had collected in his travels and
had us pair up, with one person of the pair sitting with eyes closed and
ringing a bell when they had a thought to distract them. When the bell
rang, the other of the pair was to tickle his or her partner's nose with
the feather to remind them to practice loving kindness towards oneself.
The group was at once transformed into Pavlovian dogs for loving
kindness. I placed my feather near the command center in my car,
unwittingly blocking my view from the gas gauge, something I discovered
when my car wouldn't start after staying quite late at a friend's party.
Jon's ability to teach transcended his physical presence.

One of Jon's dreams was to be a university professor. He put hours into
developing the syllabus for an introductory psychology course at IU
Southeast and spent even more time preparing each class lecture, which
he provided for each student online. His first-time students were so
impressed with his teaching methods and moved by his capacity to teach
despite working all day and battling the horrendous side effects of the
first round of chemotherapy, that they wrote him a card and gave him a
stuffed bear they had personally designed at the build a bear factory.

Jon was also a hopeless romantic. He had a poet's heart and wooed many a
young woman in his day with his tall, dark, and handsome appearance and
dreamy blue eyes. He made it a point to have fresh flowers for his fair
Claire each time she visited, making sure his able, witty, and devoted
caregiver and brother Tim made good on Jon's promise to himself when he
was confined to his trusty recliner, often with a book in hand to
continue to absorb as much knowledge as possible. He hired a barbershop
quartet to serenade Claire at her elementary school on Valentine's Day
with tunes like Danny Boy, that brought a tear to the lashes of his
Irish lass and to many onlookers or people to whom he retold the tale.

Jon told a fellow facilitator in the meditation group that the most
difficult part of his illness had been accepting the love others
continued to lavish on him. Tony asked him if he realized just how many
people loved him.

The words of Walt Whitman have been immortalized over a century after
his death. I believe that the maitri, the love that Jon, the gentle
spirt of bear heart, has shown to each of us will cause him to be
immortalized not only through our memories, but through the practices of
love we will continue to pass on to others throughout future generations.

A few months ago, Jon gave be a book as a gift. By Lama Surya Das, it is
called Letting Go of the Person You Used to Be. I wondered just why he'd
given me this book. Was my life in such great need of transformation? I
finally turned to it again when he had been admitted to the hospice unit
in his final days and found a chapter that let me know he was helping me
prepare for the grief and loss I was about to experience. Entitled
spiritual renewal- healing our wounded hearts, I found the following
quote: "Rebirth is one form of renewal and regeneration. This may happen
in the afterlife or in heaven, or it may happen through reinventing
oneself or one's career and relationships in this life. Or it can happen
moment by moment by taking a good deep breath and taking a fresh and
renewed look at life in the immediacy of the present moment. This
moment-by-moment rebirth is a practice of both love and freedom. It
allows us to embrace reality right now, as it is; it allows us to be as
we are without being burdened or conditioned by the past.

As my close friend advised, this is a most important time in your life.
Hang on and push through it. It will change you forever. And please
remember the teachings of a wise and gentle spirit and practice maitri,
loving kindness towards yourself in the midst of your heartbreaking grief.

Posted at 01:38 pm by Jester
Comments (2)

 
Sunday, June 20, 2004
Our Thanks and this ain't over


It was a bittersweet experience Saturday. We held the memorial service for Jon  and it was well attended. Our family had the opportunity to meet Jon's professors, work associates, fellow students, softball team members, former co-workers, and a slew of others. We were gladdened and uplifted by the kindness and warmth of those who came to say goodbye to my brother.

I find it difficult to explain what our familiy has been experiencing these last few months. We all loved Jon fiercly for the same reasons as many of you did. We did not want him to suffer any longer but we did not want his vibrant spirit to leave us. My brother is at peace, he said as many goodbyes as time would allow him with us and I feel we have many new family members to cherish.

There were many a discussion held regarding the  outcome and purpose of the blog you are reading. It was suggested we keep the blog up, place pictures, and notes from Jon's friends and loved ones and also use it as a place to keep Jon's memory and spirit available to all of us. (I intend to scan the "Notes to Jon" book from the service and periodically place and snippet or two here)

There was also a proposal made to consider having a memorial fund raiser run to keep the memory of my brother alive. An informal ad hoc committee has been been started by some of Jon's enthusiastic running friends and we have a start!




Posted at 03:49 pm by Jester
Comments (1)

 
Thursday, June 17, 2004
One Journey Ends

Our brother Jon's journey ended today at 7:10 p.m. He was surrounded by his family and friends who meant so much to him. Jon's loved ones were able to say goodbye and tell Jon how much he meant to us before he passed.

There will be a memorial service this Saturday June 19, at 5:30 p.m.

Thomas Jefferson Unitarian Church

4936 Brownsboro Road Louisville, Ky


Mere words can barely express how much all of the support, caring, and kindness meant to my brother and our family. Jon was truly blessed to have such a remarkable group of friends and associates surrounding him. All of his family and Claire thank you for loving and caring about my brother.





Posted at 10:25 pm by Jester
Comments (3)

 
Wednesday, June 16, 2004
Rapid developments

Dear Friends and Family,

The past couple of days have seen rapid developments in a down direction for my brother. He was released from the hospital on Monday afternoon, but overnight his condition began to deteriorate dramatically. On Tuesday morning he was admitted to inpatient hospice care at Norton Audobon here in Louisville.

He is getting excellent and compassionate care the the staff in hospice has been extraordinarily kind.  

He's now resting comfortabily and the nursing staff tells us the end is near-- perhaps in the next day or two, maybe less. Of course, no one can be sure about these things, but that is the best information we have.
 
The Barnes clan is gathering. Beth and Tim and Lili came in last night and Joe and Julie will arrive today.  

We know that some of you would like to come by and say goodbye to this man we all love so much. We welcome your presence, but we would make one request of you: Please call before you come. We want to keep the noise levels and comings and goings to a steady level to give Jon peace, so we'd like to be sure there aren't too many people at one time.  

I have Jon's cell phone, so if you'd like to come, please call his phone and we'll arrange a time. Please understand that if you do not get an answer, we may be at the most difficult time and forigve o tentiveness at that moment.

With much love and gratitude-- and a few tears -- for all your love and support. We'll give you more information as we have it.

Kathleenl 

Posted at 08:10 am by queenkat
Comments (2)

 
Sunday, June 13, 2004
Long drives for the Barnes Kids

Tis Sunday morning and I am preparing to vacate my adopted home of Louisville. Kathleen is on her way here and I will be on the road to see my lovely bride and overgrown lawn shortly. Queen Claire was here Friday night to visit her ailing beau and his spirits were uplifted.

Jon is still in the hospital. He was found to have candida again and also a low level bacterial infection, medications have been prescribed and we are seeing progress with the symptoms. Jon is still pretty weak from his latest medical battle so we ask that any visits at the hospital be kept short and you understand his condition. The anti-nausea meds really make Jon loopy so don't be surprised if he rambles abit.

Thanks for reading and take care!

p.s Bumper sticker of the week spotted by Claire:

"Some village in Texas is missing it's idiot"


Posted at 11:07 am by Jester
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Tuesday, June 08, 2004
Latest Update

Jon is still in the hospital and will possibly get out today. His infection has been identified but the source has not. He is on 3 different anti-biotics and his fever appears to be under control. I will be leaving shortly to go visit and hopefully we will have more progress to report.

My wonderful sister was well intentioned but incorrect when she mentioned Jon might appreciate visitors. He is taking some pretty powerful medications to control his symptoms and is really not in the condition to receive company.

Thanks for caring about my brother!

Posted at 11:24 am by queenkat
Comments (2)

 
Sunday, June 06, 2004
Saturday Night Fever

We suspected and confirmed on Friday that Jon was developing a fever. Queen Claire was down Friday night and we gave my brother tylenol by various means. There was some minor success but the fever returned on Saturday and was even higher. After calls to his Dr. and other alleged resources it was determined we needed to admit Jon to the hospital to get his fever under control. He was admitted Saturday night and given antibiotics and fluids.

I returned on Sunday morning and was pleasantly surprised to find his temp normal and him ready to get the #$%&^ out of there. However, the exact cause of the fever has yet to be determined and he must remain there until the cause is found. (It takes 48 hours for a bacterial culture to develope and  be evaluated).

Jon's spririts are good and he wants to go home. I will be commuting back and forth between the hospital and Barnes Manor to keep him company and stock his supplies.

thanks for looking!

Posted at 03:00 pm by Jester
Comments (1)

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