Tears

Speaking about shedding tears... Today, I suddenly decided that I needed a big cry. It has been months since I've had a big cry. I cried, and cried, and cried. I cried the kind of cry that hurts so much while it lasts, but then makes you feel like you just unloaded a huge weight. Then I realized that I had no idea whether I was crying about losing Joe...or if I was crying because I'm losing the part of myself that feels lost without Joe. He will always and forever be in my heart. I will never stop loving him. But that feeling of being so lost is fading. It's empowering for sure - yet also so scary, because it's a feeling that I've identified with for so long...

Chapter I

I keep starting and re-starting this post. My mind is crowded with so many thoughts that want to get out, and I haven't been able to figure out where to start. So I'm just going to wing it. :)

I registered for the four day Hospice & Palliative Care Music Therapy Institute at Berklee College of Music. I flew there directly from my trip to Seattle. I felt a little funny, because I was really excited about what I would be learning and excited about stepping back into the world of music therapy. Are you supposed to get excited about Hospice & Palliative Care? I wasn't sure.

Lurking beneath all of that excitement that caused me to randomly jump up and down and "yeep!" (don't worry, I don't know where the yeeping comes from either) was a bit of fear. Two years earlier, my husband was diagnosed with a terminal illness. Nine months earlier he died. In the real world that keeps on going, that's a long time. In the grieving world, that's not a long time at all. Would I end up crying for four straight days? Would I even be able to hear what was being taught? Would I have to run out of the room? Was I completely insane?

The experience ended up being incredible. I was wary at first. It wasn't long before the hospice jokes started. I am able to joke about non-funny stuff with some of my fellow widdas and widders. It's what we do to keep sane (although not for everyone.) But generally, if someone outside of the club (that nobody wants to join) cracks a death joke, they are given the title of DGI. A DGI is a person who "doesn't get it." It's true, I can have a dark sense of humor. The jokes were funny. And by golly, it felt good to be able to laugh at something that isn't supposed to be funny. It felt fine to laugh too, because I was in a room full of people who chose to work with dying people every day.

There were some extremely intense moments during those four days. During one exercise, we worked with a partner. Each person had to choose three people or things that they could not ever imagine losing. Each was written on a notecard. Then a card would be chosen at random, and we would share how it would feel if what was on the card was taken away from us. I could barely bring myself to write anything on my cards. After all, the person I cherished most in the world had already been taken away from me. I couldn't bear the thought of losing anyone else dear to me. So I turned off half of my brain.

We also did role plays. We did individual and group role plays with the opportunity to pose as the patient, a family member, or therapist. Scenarios were chosen from a basket. Indiviual sessions were practiced first. My partner volunteered to be the therapist first. He read the slip of paper he had chosen. I was a patient about to be extubated. "Have you ever been part of an extubation?" he asks me. "Well. Yes. But not as a music therapist. It was my husband..." Awkward. But we got through it. It was much more comfortable being on the therapist side.

During the group role plays, we had gone through several scenarios. One last one was chosen. I volunteered to be a family member. The scenario was a lesbian couple in their 70s. They had only been together for a couple years when one was diagnosed with a terminal illness. The healthy partner was worried about being alone. That's who I played. I didn't even think twice about volunteering. Then suddenly, I'm in the midst of this role play telling the therapist how scared I am about losing my partner, and how scared I am about being alone. That's when I realized that this was all striking really close to home. Once again, I turned off half my brain.

But something beautiful happened during these role plays and through each of the lectures. I sat there and thought, "Wow. I wish Joe and I would have had this gift of music therapy while he was sick." Sure we sang together. Sure I toted my darling ukulele to the hospital. But it's different when you're in the middle of the situation as well. My other thought was, "Wow. I really want to be able to bless other families with this gift of music therapy." In hospice and palliative care music therapy, you aren't watching people die. You're helping people to live. Recently, I mentioned that, "I've been learning and discovering that there can be as much beauty and power in death as there is in birth." This concept was continually reinforced during my time at Berklee.

The other part of the program that I found extremely valuable and encouraging was when the speakers would talk about their own losses and grief journeys. It was good to hear how they worked through it. It was also helpful to hear the boundaries and limits they set for themselves in order to remain in the field of hospice and palliative care and not go crazy.

It's funny. I didn't shed a tear during my four days at Berklee. I welled up a little when I found myself singing, "Who Am I" during an unexpected song swap one night. I welled up a little when telling the the main speaker about Joe. But I didn't cry. What I was learning was so absolutely captivating. I have so much respect for people who choose to work in Hospice and Palliative Care. They are really amazing people.

Music therapy is so much more than a lady with a guitar entertaining old folks in a nursing home. It was so wonderful to be reminded of that.

John Challis

Freedom teenager John Challis dies of cancer

Tuesday, August 19, 2008

By Mike White, Pittsburgh Post-Gazette

As John Challis battled terminal cancer this spring, he had some goals.

He wanted to graduate from Freedom High School in Beaver County. Check. That happened in June.

He wanted to take one last cruise with his family. Check. That happened in mid-June.

He wanted to start a foundation to raise money for other teenagers with cancer. Check. That got off the ground in July.

But what John wanted most was to touch people through his actions and words. Check. That happened countless times.

John Challis, a teenager who became nationally known the past few months, died of liver and lung cancer Tuesday afternoon at his family's home in Freedom Township. He was only 18, but he passed away with a sense of accomplishment.

In late June, John did an interview from his home. Weak from the cancer that had spread throughout his body, John struggled to keep his eyes open. But his message was strong.

"Everybody is scared. It's not normal to not be scared," John said of his plight. "But I'm not scared as much now. I have letters and other things from people, telling me how I've helped so many people in numerous ways. That makes me feel good."

John had been battling cancer for more than two years, but his hit in a Freedom baseball game this spring led to a story about John in the Post-Gazette, which led to national attention.

People were inspired by John's story and his words. His family has two boxes of letters and cards from well-wishers and people who wrote to let him know they were inspired by his story. His family also has two binders filled with hundreds of e-mails from people who said John had impacted their lives.

One of the e-mails came from a man who said he gave John's Post-Gazette story to a friend -- and it helped turn him away from suicide.

"I just want to say thanks to the people for keeping me going," John said. "All them little cards and stuff I got, keeps me going day by day. To know I'm going downhill a little bit, it doesn't bother me because I've helped so many people. Since I've helped so many people, this is easier to handle."

"Courage + believe = life" became John's trademark. He wrote it inside his baseball hat and some of his Freedom teammates did the same. A baseball glove company sent John a black glove with "Courage + believe = life" embossed in the leather along with John's name.

"Life ain't about how many breaths you take. It's what you do with those breaths," was another one of John's memorable quotes.

One of John's most remarkable moments came in April. He had always loved sports, but because of the cancer, he couldn't participate as a junior or senior at Freedom, except for a few plays in the final football game of Freedom's 2007 season.

John became friends with Freedom baseball coach Steve Wetzel and Mr. Wetzel asked John to be part of the team. He hadn't played baseball in a few years, but John wanted a chance to hit one last time, and Mr. Wetzel granted the wish, pinch-hitting John in a game against Aliquippa.

It couldn't have been scripted any better. John lined a run-scoring single to right field -- on the first pitch. Although he had trouble running, John made it to first base, yelling "I did it. I did it."

That hit helped John's story take off. Over the next few months, John watched a Penguins playoff game with Mario Lemieux, was featured on ESPN television, addressed the Pirates before a game and spent an afternoon with Alex Rodriguez at the New York Yankee's penthouse in Manhattan. He was interviewed on national radio stations and on some stations in other cities. ESPN did a story on him for its SportsCenter show.

A teenager from a small Western Pennsylvania town, dying of cancer, had become a national celebrity.

"We would get things [in the mail] almost every day from people all over the country," said Scott Challis, John's father.

When John attended a Yankees game a few weeks ago, he had a press conference, surrounded by more than 20 reporters and photographers.

"People would sometimes call, too, just wanting to talk to him," his father said. "Some wanted to come meet him. It was amazing. I guess he touched so many people. We were in the airport at Newark [N.J.] and people were coming up to him because they recognized him."

The Pirates brought John to a game in June, gave him a uniform and let him address the team in the clubhouse. He told the players to not worry so much about their statistics and have fun. Mr. Wetzel listened as John told the Pirates to cherish the game -- and life.

Wetzel said, "He said to them, 'You never know what life might bring you. You might have a few sniffles and think it's not a big thing. Then you go to the doctor the next day and they tell you that you have a 10-pound tumor in your stomach.'

"Some of the Pirates got emotional."

Adam LaRoche took particular interest in John and stayed in touch with him after his visit. Recently, LaRoche called John an hour before a Pirates game, just to see how he was doing.

John also spent some time with the Tampa Bay Rays when the team was in town to play the Pirates.

"Their manager, Joe Maddon, called and said he saw the story on John on ESPN and he was just in his hotel room in tears," Mr. Wetzel said. "He said he just wanted to meet John."

But John's favorite moment in the past few months was the trip to New York for a Yankees game.

"Just because it was with my dad," John said. "It was a good time because we both got to experience it, and it felt like something not just for me, but something he enjoyed as well."

John faced his death with courage, dignity, a never-quit attitude and an awareness that was hard to fathom.

John's mother, Gina, tells the story of how a nurse started coming to the family home in June. Gina Challis said, "The first time she was here, John said, 'I know why you're here. You're here to make me comfortable in my last weeks. But it could be more than a few weeks, right?'"

Mr. Wetzel became extremely close with John over the past few years and had asked John to be in his September wedding.

"I really can't explain how his story took off, but the kid was just unbelievable," Mr. Wetzel said. "His attitude and messages I think changed how some people looked at their lives. He changed how I went about life.

"I feel like a piece of my heart is gone now. The thing I'll miss most is his smile. He had a smile that could light up a room."

When asked a few weeks ago how he would like to be remembered, John said, "I could see people having some beers and hopefully remembering how I always tried my best, no matter what I was doing. That's my message just for people to always do their best, no matter what they're doing or how stupid it might seem. And no matter what, there will always be a reward, no matter how small it is."

The web site for John's foundation is www.courageforlifefoundation.org. Donations can be made through the web site.

Besides his mother and father, John is survived by a younger sister, Lexie.

Information on funeral arrangements was not yet available.

Preface

Several months ago, I received a brochure in the mail. It was for a four day summer institute at Berklee College of Music in Boston. The topic of the institute was Hospice and Palliative Care Music Therapy. I promptly threw the brochure in a corner to collect dust. Didn't these people know what I had been through? How dare they send me such a thing.

A couple weeks after that, Kenny, a father at church who has been such a source of support through this whole journey sent me an email. Some hospice was looking for music therapists and he thought I may be interested. I stared at the screen for a minute and then said, "Uhm, no. I don't think so." (Sorry Kenny.)

Meanwhile, I was attending my six week support group, "Growing Through Grief." I was also conversing with other widows and widowers through this amazing thing called the internet. One huge lesson that I was learning was how good it made me feel to help others. It felt good to not be selfish all the time and to remember that others are hurting too. (But it's still important to be selfish sometimes.) I would get so excited when I would share how I got through various milestones and make someone smile. And I would get so excited when someone would tell me that something I said or did inspired them through one of their milestones.

Then one week I found myself spending endless nights wide awake trying to figure out what I wanted to do. Most of my life I have found myself making decisions that I thought would make others happy - while still trying to hold on to who I was. This year, I made the decision that I was going to take this opportunity I was given to re-discover myself and truly follow my heart. Shortly after Joe died, a door opened for me to return to music therapy. I was excited, but then realized I couldn't do it. I had too much work to do on me to be able to do any kind of therapy with others. So I started to dabble with other interests, running as far away from the field of therapy as I could.

I remember an early conversation I had with a friend about finding some type of support group. My response at the time was that I could see myself leading a support group more than I could see myself attending one...and yet, I knew that in my state at the time I wouldn't be an effective leader.

Back to my endless nights of no sleep... I was working on myself. I was re-discovering myself. I was attending a support group. And I was finding myself completely drawn to hospice and palliative care as well as grief and loss therapy. I actually started looking for grief counseling programs. Then it dawned on me. I'm a music therapist. I can do all of this using music therapy. Not only that, but I miss music therapy.

Coinciding with this revelation of mine was an email reminder to register for the Hospice and Palliative Care Music Therapy Institute. Eventually, I learned about the Centers of Music Therapy in End of Life Care and the trainings they offer, including another one in Grief and Loss Music Therapy.

To be continued...

On a lighter note...

I think that Joe knew I really needed to feel his presence today. As I was driving to meet with some friends this evening, Aerosmith's 'I don't want to miss a thing' came on the radio. After the song was over, I switched stations, and the song came on again...from the beginning. I used to sing this song to Joe all the time. Then he would sing it to me. It was kind of a joke between us, because on a good day, Joe was one of those people who would fall asleep as soon as his head hit his pillow. He couldn't stay awake "just to hear me breathing" if he tried. :)

On the way home, I was listening to Delilah. She is this sappy squishy radio personality who plays sappy squishy songs for people with sappy squishy stories. Sometimes the stories are really moving. Sometimes they aren't. :) It was kind of a guilty pleasure for Joe and I to listen to Delilah in the car when we were headed somewhere in the evenings. We would either say, "awwwww, that's so sweet." Or we would laugh because of the over-the-top sappy squishy-ness. Sometimes we would laugh because the caller would share something really personal and then say, "I would like you to choose a song." Then Delilah would proceed to play a song that seemed weird or inappropriate.

So...I'm listening to Delilah, and I thought, "If I were to call and dedicate a song to Joe, I would ask Delilah to play, 'I can only imagine' by Mercy Me." It is a song that we often sang together. It was one of the songs used in our wedding videos. It was sung at Joe's funeral. Wouldn't you know, with no introduction or story, the very next song that played on the radio was 'I can only Imagine.'



Thank you Joe.

I Don't Want to Miss a Thing
I could stay awake just to hear you breathing
Watch you smile while you are sleeping
While you're far away dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Every moment spent with you is a moment I treasure

Don't want to close my eyes
I don't want to fall asleep
Cause I''d miss you baby
And I dont want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you baby
And I don't want to miss a thing

Lying close to you feeling your heart beating
And I'm wondering what you're dreaming
Wondering if its me you're seeing
Then I kiss your eyes
And thank God were together
I just want to stay with you in this moment forever
Forever and ever

Don't want to close my eyes
I don't want to fall asleep
Cause Id miss you baby
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you baby
And I don't want to miss a thing

I don't want to miss one smile
I don't want to miss one kiss
I just want to be with you
Right here with you, just like this
I just want to hold you close
Feel your heart so close to mine
And just stay here in this moment
For all the rest of time

Don't want to close my eyes
I don't want to fall asleep
Cause Id miss you baby
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you baby
And I don't want to miss a thing

Don't want to close my eyes
I don't want to fall asleep
I don't want to miss a thing

I Can Only Imagine
I can only imagine
What it will be like
When I walk
By your side

I can only imagine
What my eyes will see
When your face
Is before me
I can only imagine

I can only imagine

[Chorus:]
Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine

I can only imagine

I can only imagine
When that day comes
And I find myself
Standing in the Son

I can only imagine
When all I will do
Is forever
Forever worship You
I can only imagine

I can only imagine

[Chorus]

I can only imagine [x2]

I can only imagine
When all I will do
Is forever, forever worship you

I can only imagine

"Temporary inconvenience for permanent improvement"

The sermon in church today was tough to swallow. We've been going through a series on God's road signs. Today the topic was the detour sign - the sign that symbolizes a temporary inconvenience for a permanent improvement. The question was, "Detour or Providence?"

de·tour Pronunciation: \ˈdē-ˌtu̇r also di-ˈtu̇r\

: a deviation from a direct course or the usual procedure; especially : a roundabout way temporarily replacing part of a route

prov·i·dence Pronunciation: \ˈprä-və-dən(t)s, -ˌden(t)s\

:often capitalized : divine guidance or care

capitalized : God conceived as the power sustaining and guiding human destiny

And so we learned about the detours of life and how God uses them to change us, shape us, and ultimately bring glory to His name. We heard about Joseph - the one who was on top of the world. He was so loved and so spoiled his father gave him this beautiful coat. But Joseph's brothers became jealous and sold him. Joseph finds himself in Egypt, far from his family and the familiarity of the life he knew. But God is there, and things are good. Then, BAM. Another detour. But God is still there, and things get even better.

We heard about Lisa Beamer, the widow of Tod Beamer who was aboard United Flight 93 on 9/11. Her life was good. She had her husband, two sons, and another child on the way. Then one day her life is suddenly changed forever. But God is there and helps her face this tragedy with grace.

So what did I do? I sat there and cried. I cried because I miss my Joe. I cried for Rupert, Brandon, Emily, and their families. I cried for Jai Pausch and her family. I cried for Lisa Beamer and all of the families affected by 9/11. I cried for all of my dear "widdas" and "widders." I cried because I don't like those big orange detour signs. They keep appearing and I just want them to go away. Temporary inconvenience? How about life-numbing awfulness?

Then I felt my heart crying out to God to help me understand and continue to press on with grace. "The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express." (Romans 8:26)

The truth is, I've been learning and discovering that there can be as much beauty and power in death as there is in birth. It has been an interesting revelation that is leading me in an unexpected direction. And so, even though I will still find myself suddenly crying and cursing those orange detour signs...I do believe in Providence. I do believe that God has put me on a path leading towards permanent improvement. In fact, I was reminded of my very own words over a year ago, "if there is anything that people from the 'Burgh can handle, it is detours and potholes." Bring it on!

"Slowly I began to understand that the plans God has for us don’t just include “good” things, but the whole array of human events … I remember my mom saying that many people look for miracles — things that in their human minds “fix” a difficult situation. Many miracles, however, are not a change to the normal course of human events; they’re found in God’s ability and desire to sustain and nurture people through even the worst situations. Somewhere along the way, I stopped demanding that God fix the problems in my life and started to be thankful for his presence as I endured them."
— Lisa Beamer (Let's Roll!: Ordinary People, Extraordinary Courage)

Psalm 16

I love the Lord, for he heard my voice;
he heard my cry for mercy.
Because he turned his ear to me,
I will call on him as long as I live.

The cords of death entangled me,
the anguish of the grave came upon me;

I was overcome by trouble and sorrow.
Then I called on the name of the Lord:
"O Lord, save me!"

The Lord is gracious and righteous;
our God is full of compassion.
The Lord protects the simplehearted;
when I was in great need, he saved me.

Be at rest once more, O my soul,
for the Lord has been good to you.

For you, O Lord, have delivered my soul
from death,
my eyes from tears,
my feet from stumbling,
that I may walk before the Lord
in the land of the living.
I believed; therefore, I said,
"I am greatly afflicted."
And in my dismay I said,
"All men are liars."

How can I repay the Lord
for all his goodness to me?
I will lift up the cup of salvation
and call on the name of
the Lord.
I will fulfill my vows to the Lord
in the presence of all his people.

Precious in the sight of the
Lord
is the death of his saints.
O Lord, truly I am your
servant;
I am your servant,
the son of your
maidservant;
you have freed me from my chains.

I will sacrifice a thank offering to you
and call on the name of the Lord.
I will fulfill my vows to the Lord
in the presence of all his people,
in the courts of the house of the Lord -
in your midst, O Jerusalem.

Praise the Lord.

Esther

Dear Esther went home to be with the Lord on Saturday, July 26 at 4am. Please keep her husband Rupert and their families in your thoughts and prayers.

"Listen, I tell you a mystery: We will not all sleep, but we will all be changed - in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed. For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: 'Death has been swallowed up in victory.'" ~1 Corinthians 15:51-54

Prof whose 'last lecture' became a sensation dies

By RAMIT PLUSHNICK-MASTI, Associated Press Writer

PITTSBURGH - Randy Pausch, the Carnegie Mellon University computer scientist whose "last lecture" about facing terminal cancer became an Internet sensation and a best-selling book, died Friday. He was 47.

Pausch died at his home in Chesapeake, Va., said Jeffrey Zaslow, a Wall Street Journal writer who co-wrote Pausch's book. Pausch and his family had moved there last fall to be closer to his wife's relatives.

Pausch was diagnosed with incurable pancreatic cancer in September 2006. His popular last lecture at Carnegie Mellon in September 2007 garnered international attention and was viewed by millions on the Internet.

In it, Pausch celebrated living the life he had always dreamed of instead of concentrating on impending death.

"The lecture was for my kids, but if others are finding value in it, that is wonderful," Pausch wrote on his Web site. "But rest assured; I'm hardly unique."

The book "The Last Lecture" leaped to the top of the nonfiction best-seller lists after its publication in April and remains there this week. The book deal was reported to be worth more than $6 million.

Pausch said he dictated the book to Zaslow by cell phone, and Zaslow recalled Friday that he was "strong and funny" during their collaboration.

"It was the most fun 53 days of my life because it was like a performance," Zaslow told The Associated Press. "It was like getting 53 extra lectures." He recalled that Pausch became emotional when they worked on the last chapter, though, because that to him was the "end of the lecture, the book, his life."

At Carnegie Mellon, Pausch was a professor of computer science, human-computer interaction and design, and was recognized as a pioneer of virtual reality research. On campus, he became known for his flamboyance and showmanship as a teacher and mentor.

The speech last fall was part of a series Carnegie Mellon called "The Last Lecture," where professors were asked to think about what matters to them most and give a hypothetical final talk. The name of the lecture series was changed to "Journeys" before Pausch spoke, something he joked about in his lecture.

"I thought, damn, I finally nailed the venue and they renamed it," he said.

He told the packed auditorium he fulfilled almost all his childhood dreams — being in zero gravity, writing an article in the World Book Encyclopedia and working with the Walt Disney Co.

The one that eluded him? Playing in the National Football League.

"If I don't seem as depressed or morose as I should be, sorry to disappoint you," Pausch said.

He then joked about his quirky hobby of winning stuffed animals at amusement parks — another of his childhood dreams — and how his mother introduced him to people to keep him humble: "This is my son. He's a doctor, but not the kind that helps people."

Pausch said he was embarrassed and flattered by the popularity of his message. Millions viewed the complete or abridged version of the lecture, titled "Really Achieving Your Childhood Dreams," online.

"I don't know how to not have fun," he said in the lecture. "I'm dying and I'm having fun. And I'm going to keep having fun every day I have left. Because there's no other way to play it."

Pausch lobbied Congress for more federal funding for pancreatic cancer research and appeared on "Oprah" and other TV shows. In what he called "a truly magical experience," he was even invited to appear as an extra in the upcoming "Star Trek" movie.

He had one line of dialogue, got to keep his costume and donated his $217.06 paycheck to charity.

Pausch blogged regularly about his medical treatment. On Feb. 15, exactly six months after he was told he had three to six months of healthy living left, Pausch posted a photo of himself to show he was "still alive & healthy."

In May, Pausch spoke at Carnegie Mellon's commencement ceremonies, telling graduates that what mattered was he could look back and say, "pretty much any time I got a chance to do something cool, I tried to grab for it, and that's where my solace comes from."

"We don't beat the reaper by living longer, we beat the reaper by living well and living fully," he said.

Born in 1960, Pausch received his bachelor's degree in computer science from Brown University and his Ph.D. from Carnegie Mellon.

He co-founded Carnegie Mellon's Entertainment Technology Center, a master's program for bringing artists and engineers together. The university named a footbridge in his honor. He also created an animation-based teaching program for high school and college students to have fun while learning computer programming.

In February, the Academy of Interactive Arts & Sciences in California announced the creation of the Dr. Randy Pausch Scholarship Fund for university students who pursue careers in game design, development and production.

He is survived by his wife, Jai, and their three children, Dylan, Logan and Chloe; his mother, Virginia Pausch of Columbia, Md.; and a sister, Tamara Mason of Lynchburg, Va.

In a statement Friday, his wife thanked those who sent messages of support and said her husband was proud that his lecture and book "inspired parents to revisit their priorities, particularly their relationships with their children."

___

Associated Press writer Ramesh Santanam contributed to this report.

___

On the Net:

Pausch's lecture: http://www.cmu.edu/randyslecture/

Cancer Sucks

You know how cancer sucks?
It totally does.

But there is something to be said about people who are able to blossom in the face of adversity. Or rather, how God enables people to blossom in the face of adversity. When I read about the journey of others dealing with cancer, my heart truly aches for them. Then...I'm struck by their beauty. Inspired by their walk. To me, it has brought new meaning to the bible verse, "Watch and pray so that you will not fall into temptation. The spirit is willing, but the body is weak." (Matthew 26:41)

When an individual or a loved one is faced with something so harsh and so difficult like cancer, it becomes so easy to fall into the temptation of shutting out the world, giving up, and drowning yourself in self-pity. Your body is literally weak - either from the tolls of illness or the tolls of care-giving. The incredible thing is that God is right there providing the strength needed to handle the harsh new reality with beauty and grace. It's beautiful how faith can be bolstered in times of adversity - a time when it would be all too easy to dismiss God and decide that He doesn't care anymore. Even in times when I've witnessed people taking a break from God because life just seems too hard (I've taken those breaks too...), I still see God working. I still see a will to fight that is too powerful to be human. At least that's my view. We are weak, but He is strong.

Once again, I'm going to share with you some pretty inspiring people so that you can join me in storming the heavens with prayer. (And sending off good vibes, virtual hugs, and warm thoughts.)

Esther & Rupert - I met Rupert close to a dozen years ago. We were in the same fellowship at church. We lost touch after he graduated and didn't re-connect again until this week. It's difficult to re-connect with a person under such sad circumstances. At the same time, I feel so privileged to be able to witness a little part of the love shared between Esther, Rupert, & the Lord. They are a truly beautiful and awe-inspiring couple.

Erica - Erica has been recovering from her bone marrow transplant she had at the end of April. I love reading Erica's blog because she has such a gift of expression. She writes with this raw honesty that is so poetic, and even in her darkest days you can feel her undeniable spunk.

Ann & Chris - After doing so well for so long, Ann has relapsed and is on the road to a second transplant. Ann and Chris were just starting to makes all kinds of wonderful changes and plans - and then their lives were turned upside down again.

And now for some local heroes...

These guys have been all over the news and youtube because they have such a passion to live despite being told that they may not have much time.

Randy Pausch

Adam Frey

John Challis -

Seattle with my brother

My "baby" brother is nine and a half years younger than me. (Okay, more like nine and a quarter.) He just suddenly appeared one day, long after I had gotten used to all the perks of being an only child. I immediately learned that there are wonderful perks to having a little brother too. The day my brother was born, my dad picked me up from school. I didn't have to ride the bus! Not only that, but I was allowed to skip my violin lesson to go meet the newest member of the family. Those are the kinds of things that make brothers cool to nine year olds.

Since there was such a gap between the two of us, I became kind of a second mother to my little brother. I was always so proud of Victor. When he was a baby, I wore a necklace with his photo in it. When he got a little older, I'd show up at school wearing his yarn/paperclip/rubber band jewelry creations. In college I'd show off his drawings, letters, and photos. We were as close as siblings nine and a quarter years apart could be.

The thing is, conversations between a 20 year old and a 10 year old are pretty limited. Victor could tell me all the things that concern a fourth grader, and ask me for help on his homework. I could not really share about all that I was experiencing and ask him for advice on life and boys. So when we spent time together, we would talk about teachers we had in common, books we had both read, or make music together.

Fast forward a decade or so. My baby brother is now an adult. *gasp* I don't know how or when it happened, but at some point he grew up. Before I knew it, we started having normal sibling conversations. It has been such a blessing to me. I entered such a scary phase in life, and sometimes I really needed to talk to someone who knew about the yucky background stuff that doesn't get talked about. Poor Victor became that someone.

No worries. I'm still Big Boss Sister Karen. He's still Little Bratty Boogerboy Victor. I still tell him what to do. He still does everything he can to annoy me. But somehow, our siblingness has reached a new level, and that's cool.

So, after Victor graduated from college, the two of us flew off to Seattle to celebrate. Well, we claimed it was to celebrate. Really, it was to annoy our beloved Cousin Lilly (Lillian). We never took a trip together without our parents. It was so much fun, even if we wanted to strangle each other by the end of the week.

We did all kinds of wonderful touristy things you're supposed to do in Seattle. We were nervous in the beginning. When we left the 'burgh, temperatures were in the 90s. It was so hot and humid. Then we arrived in Seattle. As soon as I got off the plane, I sneezed five times in a row and kept saying, "oh I hate Seattle." When we got outside, it was rainy, windy, and temperatures were closer to the 40s. I got a lovely email from Joe's best friend Mike welcoming me to Seattle and informing me that it was the coldest first week of June since the late 1800s. Boy did Victor and I feel special to be experiencing such a monumental event...

The week ended up getting warmer, and we ended up falling in love with Seattle. Lilly was the perfect host. In between all of our tourist activities, Victor and I had the privilege of meeting up with several Pittsburgh "kids" who moved to Seattle. We also met some of our relatives for the first time, including our 8th great-aunt. They were really special times.


You can see some of our photos here.

I think I've reached my gush-about-brother quota for this decade. :)

Happy Birthday, Joe!

 

Today would have been Joe's 34th birthday. I wonder what birthdays are like up in heaven? The singing must be better. The cake must be better too. I bet they still have trick candles though. :)

~~~
Just to give you a glimpse at how wonderful my church is, I am sharing a little birthday video the PCC English congregation created for Joe last year. (Oh, and since I'm sharing this, I guess I should say, "What was I thinking? There is no way that the singing could be better up in heaven...") :)

Sister of two Harvard grads. :)

I have experienced quite an eventful month. The kind of month that is so eventful, that when you try to talk about it, you don't know where to start. The first week of June, my little brother, Victor, graduated from Harvard. The week of his graduation the weather was wet, cold, and slightly miserable. But Harvard is Harvard, so the festivities continued...outside. It was a fun week. My family was able to hang out with Albert. We were able to hang out with Victor's friends and their families. We were able to eat lots of good food (and some not so good food!). We ate Harvard ice cream (rounds of vanilla ice cream with a red 'H'). J.K. Rowling gave the commencement speech. I love Harry Potter. I'm not one of those hardcore fans who waited in long lines at midnite and finished each book in one sitting. I am just a regular fan who was very excited to hear what J.K. Rowling had to say. She was absolutely lovely, and I think I have even more respect for her now. Her speech was entitled, "The Fringe Benefits of Failure, and the Importance of Imagination."

That is all I have to share for now. Little bits at a time. :)

Graduation Week.

This week I'll be attending "little" Victor's Harvard graduation festivities. I'm so proud of my cute, nerdy, little brother! In preparation, I'm sharing some photos from the Harvard graduation festivities of my other cute, nerdy, little brother!

You may recognize the lovely outfit Joe is wearing in the first photo from the lovely "Ass Stance" photo. It was before our walk...and before Joe tucked in his shirt.













Brothers.













Joe and I were browsing through stores when we saw a pile of cheap name hats. We found one that said "Joe" and another that said "Victor." Joe thought it would be hilarious to get them and wear them around. Nobody ever seemed to understand those hats. That's what made them so fun.










Family photo.

More...

Longwood Gardens/No more Hell

Today's photos are from a trip Joe and I took to Longwood Gardens. It felt like my first visit there, but apparently my family visited several times when I was a wee little girl.

I loved it when Joe winked at me. I just thought it was the cutest thing. And he never just winked. He would do it in slow motion which always made me smile. Joe had the best facial expressions. People would tell him he was like a cartoon. Funny, because people said that about me too. To think "Joe & Karen" could have been a cartoon on Nickelodeon!

So, a year ago today Joe was admitted to the hospital. He only had one week at home after that admission. On our 2007 calendar where Joe marked important dates and appointments, there is a long arrow that starts at May 21 and goes through all of June. In the middle of that arrow, he wrote, "HELL." That pretty much sums it up.

I'm glad that Joe isn't in hell anymore. I'm glad that he is free from bone marrow biopsies, oxygen tanks, and IVs. I'm glad that he isn't suffering. But oh, I still miss him.

I miss him every single day. When we were living in different cities, Joe sent me a card that said, "My hug has a hole in it." That's how I feel. When I'm happy and excited, I miss sharing that with him. When I'm sad and confused, I miss being able to cry on his shoulder. When I'm angry and frustrated, I miss being able to vent to him. I miss holding his hand. I miss waking up next to him. I miss making him laugh.

I could roll out of bed with matted hair, my glasses, wrinkled clothes, drool on my cheek and a new pimple - and Joe would tell me how adorable I was. And I would believe him...well, until I looked into the mirror. :)

Once, I did a poor job backing out of the garage and put a little dent in Joe's car. Joe LOVED his car. He named his car "Sexy Lexi." He would often pause, look at his car, and say, "Isn't she sexy?" Joe was finishing up being on call at the hospital when the incident happened. Needless to say, I was terrified to face him. I was shaking when I called to confess. Joe never really lost his temper with me...but then, I had never dented his car before. Amazingly enough, he wasn't mad at all. Joe said, "well, did you do it on purpose?" (Of course I hadn't.) "Then I'm not mad." That was that. That was love.

I'm actually doing quite well. A lot of exciting things are happening, which I'll share eventually. But with each exciting thing is that bittersweetness that comes with knowing that Joe isn't physically here to share it with me.

Valley Forge

Joe had this old laptop computer that stopped working years ago. That old laptop held many photos from our early years. We had printed out a few of them, but most of them were forgotten. Recently, those photos were recovered. What a gift to be able to see those pictures again. It brought back a lot of fun memories.

Today I'm sharing some photos from a trip to Valley Forge. Joe was really great about planning things to do in and around Philadelphia. It was a wonderful way for us to get to know each other.

This was one of those photos that seemed like a good idea at the time. :)

Awwww. We were so young.

Isn't he so cute?

Gotta love the trademark smile.

Cowboy Joe

I mentioned before how Joe wanted to be a black man when he grew up - and how he came close by becoming the voice and mind of P. Diddy. :) Then I briefly mentioned that Joe had secret aspirations to be a cowboy. I did not mention just how far these aspirations carried him. Did you know that Joe was also the voice, inspiration, and talent behind Garth Brooks? Seriously. Joe told me himself. :P

One of the things Joe wanted to do after he finished his residency was to get a Toyota Tacoma. He believed that every person should own a pickup truck at some point in their life. I loved that he was just Joe. He never tried to conform to a certain image.

Joe liked to say that he was easy to get along with because he adapted so well to different situations. It's true. One day, you might see him rubbing elbows with hoity-toity people at a five-star restaurant and wearing an Armani suit. Then the next day you would see him riding in the back of a beat-up car laughing with friends who have never heard of Armani.

Now I'll tell you a secret. Joe claimed that he could even change the way he spoke around different people. I would always laugh at him though, because his "black" speak and his "cowboy" speak sounded exactly the same.

How could you not love Joe?

Free!

I know that everyone loves things that are free. It's that time of year again for the "Thanks Mom awareness and recruitment campaign." If you have not yet registered to be a bone marrow donor, because you've been waiting for the perfect opportunity - now is your chance. The cost of 46,000 kits will be covered (10,000 online & 36,000 in person).

Life. It's in you.

During our Thanks Mom awareness and recruitment campaign, May 5 to May 19, 2008, join the marrow donor Registry and give hope to patients. What better way to say “Thanks, Mom” for giving you life than to share that gift with another person.

When you become a marrow donor, you join the global movement of more than 11 million donors who stand ready to give someone a future.

You could be the one a patient needs.

So, go ahead. Click on the links above and learn more. Spread the word. Join Now. Keep praying for Erica. Do all of this in memory of Joe, Alivia, Amy, & Dale.

In case you need more inspiration, here are some videos with success story Christine Pechera.

• ABC News Story by Denise Dador
• CW – KTLA Ch 5 News Segment
• FOX - KCOP Channel 13 News Segment

Shout-out!

On Saturday, I met up with a group of young widow(er)s in the area. We had dinner at Joe's Crab Shack. My Joe had been to the chain a number of times with one of his dear friends (Hi Shelley!), but it was my first visit. During dinner, I had a lovely view of Elvis looking like he had to go to the bathroom and surrounded by a heart of lobsters. Pretty funny. More importantly, I made new friends and had a lovely time. Highlights of the evening included...

~Explaining to the waiter that separate checks would be great and that nobody was with anybody...because we were a group of widows and widowers.

~Watching the waiters and waitresses dance every hour with the most bored expressions on their faces...then watching a 90 year-old lady from the next table get out of her wheelchair and show them all up with her boogeying.

~Laughing at the birthday boy from our table as he was forced to wear a coconut bra and a grass skirt while we sang to him.

~Going to Saddleridge and meeting Danger from Froggy Radio. (I confess, I know little about country music. But Joe? I know I mentioned before how he wanted to be a black man when we grew up. I don't think I mentioned that he also had secret aspirations to be a cowboy.)

~Being asked by Danger what we were out celebrating that night...and having to mention more than once that we were just a group of widows and widowers having some fun, because he thought we were joking the first time.

~Doing the Electric Slide and hearing Danger say, "And a shout-out to the Young Widows!"

~Watching one of my new friends ride the mechanical bull.



Here's another shout-out to all the widows and widowers of the world...

~Because we're all part of that club that nobody wants to join.

~Because even though there isn't anything at all funny about being a widow(er) or saying, "oh, my spouse is dead." Sometimes it is funny, because it has to be.

~Because we know that it doesn't matter if we have kids or don't have kids,
it doesn't matter if we were officially married or not,
it doesn't matter if we were married for months or decades,
it doesn't matter if we are young or old,
none of that makes the hurt less painful.

~Because we know that it usually hurts a hundred times more to be told not to think about "it," than it does to actually think about "it."

~Because we know that there is no on/off switch to grieving.

~Because maybe we cry hard...but we also laugh hard.

I love my "widdas!" A million hugs to all of you. :)

Spring

It is Spring. That time of year when the sun is shining, the trees are swaying, and the birds are chirping. That time of year when love is in the air and we walk around with stupid grins on our faces because that extra boost of Vitamin D makes us feel all twitterpated and re-energized.

I think about how things were a year ago, and I find...
It's a strange feeling for me to be able to go out and enjoy the sun and the flowers.
It's a strange feeling to be enjoying all the beauty by myself.
It's strange to feel carefree and happy. (Although the "but..." in the back of my mind never goes away.)

This week, I feel as though I've fallen in love...with myself. This will sound completely normal to Cousin Van who claims that I am narcissistic. (There is likely more truth to that notion than I care to admit.) But in all seriousness, my self-esteem was shot to pieces months ago. Some weeks I would gain a burst of confidence...and then I would feel defeated again. I'm not sure how long this latest bout of confidence will last, but I'm going to cling to it as tightly as I can. I'm perfectly fine with my brain believing that I am beautiful, valuable, and lovable. Just call me Little Miss Narcissistic.

Speaking of beautiful, valuable, and lovable. I need you to begin storming the heavens with prayers and sending all the good vibes and virtual hugs you can in the direction of California. Erica, has been undergoing full body radiation, and is scheduled to have a bone marrow transplant on April 29. You have no idea how much I want her to beat this stupid sucker known as leukemia. I hate, hate, hate leukemia. I have been so inspired and touched by Erica, her family, and friends. They have such love. They are so real. They are so cool. Pray, pray, pray for this amazing girl and her family.

I was remembering today, how I used to always ask people to share "Praise reports." I firmly believe that no matter how awful you think your week has been, you can come up with something to be thankful for. I have a lot of praises to report this week.

~After a month, I GOT MY CAR BACK!!!!!! I'm so thrilled. It feels like getting a new car. It looks beautiful. The car doctors did a wonderful job. They even cleaned the whole interior of my car, so there is this lovely, fresh, soap smell. I'm so happy. And I'm thankful for my super cool neighbor Greg, who drove me over to fetch my car.

~There is a lovely high school girl named Dorothy at my church. She had the opportunity to play side-by-side with the Pittsburgh Symphony Orchestra this week. Her family invited me to attend. It was a wonderful concert. An added bonus is that I got to see my Uncle Kao who plays for the symphony. I told him that Dorothy was more important than he was...and the whole reason I was there. Another added bonus was free ice cream after the concert!

~I attended a self-defense workshop for women this week. I think that all women should do this. It was really great.

~I've still been attending the "Growing through Grief" group. It has been really wonderful for me.

~I took a little hike with my neighbor Cathy and her dog.

~I started crocheting again, after an extended break. It makes me happy.

~I've been taking this web page design class. No matter how grouchy I might be when I wake up, my classmates put a smile on my face. I just walk in there and laugh. Today I was really excited, because we learned something that I've been wanting to learn since day one.

~Spring is beautiful.