Merry Christmas

In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world. (This was the first census that took place while Quirnius was governor of Syria.) And everyone went to his own town to register. So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.

And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them. "Do not be afraid, I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."

Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,

"Glory to God in the highest, and on earth peace to men on whom his favor rests."

When the angels had left them and gone into heaven, the shepherds said to one another, "Let's go to Bethlehem and see this thing that has happened, which the Lord has told us about."

So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. When they had seen him, they spread the word concerning what had been told them about this child, and all who heard it were amazed at what the shepherds said to them. But Mary treasured up all these things and pondered them in her heart. The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.

~Luke 2:1-20

~~~

I wanted to wish everyone a wonderful and blessed Christmas. One year ago, I remember attending the Christmas eve service with my family. Everything felt so surreal. I could see the joy of the season, but I couldn't feel it. I knew in my heart that I was blessed, but I couldn't feel it. As we sang Christmas carols through the night, tears were streaming down my face. My smile was forced; my greetings were awkward.

This year, I could feel the joy of the season. This year, I could feel that I am blessed. My smile was real; my greetings were genuine. It has been an amazing year. To look back and see how far I have come emotionally and spiritually is really incredible. It feels as though Joe has been my own personal Guardian Angel guiding me towards peace and happiness.

I have been blessed with wonderful people in my life. Thank you for the prayers, the cards, the texts, the emails, the hugs, the smiles, the stories, the shoulders, the ears, the pep talks, the encouragement, the love, the food, the phone calls, the visits, the photos, the craziness, and goofiness, and silliness... what an amazing year it has been. Thank you.

Bye bye, sweet Erica...

"Last night, December 4th, 2008, at 11:35pm, Erica Jean Murray passed away. It was a calm and peaceful moment... she simply took a few deep breaths and fell asleep."

Please continue to pray for her family and friends.

Just pray...

That's all. Just pray...

Thanksgiving

Thanksgiving week is here again. Here is my list of things that I am thankful for this year...

I am thankful for my parents for loving me through all of my mood swings.
I am thankful for my brothers for being so fun, and helpful, and understanding.
I am thankful for the coolest cousins ever.
I am thankful for friends who love me for me, even when I'm being less than lovable... or vain and superficial.
I am thankful for Joe, for teaching me the importance of loving more, caring more, and enjoying life more.
I am thankful for my fellow widdas & widders for making me feel sane in times of insanity.
I am thankful that I have the kind of Pastor who will drive to my place just to get rid of a dead bird, because I'm a wimp.
I am thankful that my Pastor is married to the kind of lady who will hunt me down when I run away so that I have a shoulder to cry on... and will celebrate with me when I have happy red shoe days.

Which brings me to the other things I'm thankful for...
... red shoes, of course. And striped socks.
.... my beloved Steelers (Stillers!) - even when they make game watching stressful.
.... this magical creation known as pizza.
.... my Tuesday evening phone calls.
.... couch conversations.
.... soul dancing in the kitchen, hula dancing in the family room, and silly dancing on the train.
.... sushi buffets.
.... stars.
... tea and cookies... or tea and cake... or tea and silliness... or just the friends that share all of that with me.
... being able to share secrets and stories.
... little kid smiles and hugs.
... the kind of snow that looks like glitter falling from the sky.
... coffee ice cream. Or any ice cream with peanut butter!
... Christmas lights.
... secret Chik-fil-A runs.
... the opportunity to sit and breathe after certain little brothers create situations in which you have to unexpectedly run so fast your legs feel like jelly.
... the super cool magnets on my fridge.
... my swings, in my park. :)
... jellybeans.
... blue nailpolish.
... hugs.

I am blessed.

I think a great part of being blessed and feeling blessed is an attitude. Some people seemingly have the world in the palm of their hands, and yet they are miserable. Others seem to have nothing and yet are filled with joy.

I always try to remind myself how blessed I am at the end of each day. This past year when I was experiencing the toughest months of my life I realized just how blessed I am. More times than I could count, people would say, "I envy you." or "You're so lucky." Every time I heard that, I'd be surprised. What made me enviable or lucky was different to each person. All I could think was, "what kind of emptiness do they feel in their life that they could be envious of me?"

But I am blessed. I know it. Sometimes, it feels unfair how blessed I am. I truly hope that anyone who still reads my ramblings feels truly blessed as well. Happy Thanksgiving.

Labels

Since Joe died, I've connected with many widows and widowers virtually and in real life. It's been enlightening to hear each person's story. Our stories are all at once very different and very similar. Through these connections, I've continued to learn so much about myself... about life... about mourning and grieving.

Many times, someone will share something and I can't stop thinking, "Wow. Yes."

Recently, a widower shared something that I found to be so true and valid. He speaks of one specific example, but what he says can be applied to other areas of life as well. So I'm sharing an excerpt... [DW = Dear Wife]

We are the authors of our every next moment.
Are you “writing” yourself a happy today and tomorrow?
Are your labels/thoughts in line with the future that you long for?

I was thinking about the choice we each have in accepting a label that society has placed on us….and the choice we each have in the labels that we “give” to ourselves. I think it is crucial that we take a good look at these labels because I believe they are extremely instrumental in defining our future. For example, in regards to dating, I once had the thought “boy, it’s gonna be hard for me to find someone that can accept the love that I will always have for my DW”. Internally, I more or less gave myself the label of “Damaged Goods”. If I ask myself the question I posed above…”Would I like to have that label (Damaged Goods)?”. The answer would be a big “Heck no”. Does this label allow me to grow? No. Does this label lead to what I want for my future? No, no, and no. That powerful label was debilitating because it limited what I believed I was worth….limited what I believed I had to offer another. Once I realized the disservice I was doing myself, I immediately pitched the lousy label. I chose a more hopeful label/perspective, and instead of focusing on the challenges that the love I have for my DW would pose on a future relationship, I instead chose to focus on the fact that I now have more love to offer another! What a difference this made for me. It allowed me to view my love for my DW as an actual asset…I have more love to give others!…more love to give the world!
Now while I’m not naïve in thinking that my past will never present challenges in future relationships…I think the important point is, that I/we need to focus on our “special gifts” not on our “special needs”. [Thank you, AR]

I think some variation of what was written has been a conversation I've had in my head each day for months and months. Here's to writing a happy today and tomorrow. :)

A Doctor, a Mutation and a Potential Cure for AIDS

The startling case of an AIDS patient who underwent a bone marrow transplant to treat leukemia is stirring new hope that gene-therapy strategies on the far edges of AIDS research might someday cure the disease.

The patient, a 42-year-old American living in Berlin, is still recovering from his leukemia therapy, but he appears to have won his battle with AIDS. Doctors have not been able to detect the virus in his blood for more than 600 days, despite his having ceased all conventional AIDS medication. Normally when a patient stops taking AIDS drugs, the virus stampedes through the body within weeks, or days.
[Dr. Gero Hutter] Sixten Koerper

Dr. Gero Hütter isn't an AIDS specialist, but he 'functionally cured' a patient, who shows no sign of the disease.

"I was very surprised," said the doctor, Gero Hütter.

The breakthrough appears to be that Dr. Hütter, a soft-spoken hematologist who isn't an AIDS specialist, deliberately replaced the patient's bone marrow cells with those from a donor who has a naturally occurring genetic mutation that renders his cells immune to almost all strains of HIV, the virus that causes AIDS.

The development suggests a potential new therapeutic avenue and comes as the search for a cure has adopted new urgency. Many fear that current AIDS drugs aren't sustainable. Known as antiretrovirals, the medications prevent the virus from replicating but must be taken every day for life and are expensive for poor countries where the disease runs rampant. Last year, AIDS killed two million people; 2.7 million more contracted the virus, so treatment costs will keep ballooning.

While cautioning that the Berlin case could be a fluke, David Baltimore, who won a Nobel prize for his research on tumor viruses, deemed it "a very good sign" and a virtual "proof of principle" for gene-therapy approaches. Dr. Baltimore and his colleague, University of California at Los Angeles researcher Irvin Chen, have developed a gene therapy strategy against HIV that works in a similar way to the Berlin case. Drs. Baltimore and Chen have formed a private company to develop the therapy.

Back in 1996, when "cocktails" of antiretroviral drugs were proved effective, some researchers proposed that all cells harboring HIV might eventually die off, leading to eradication of HIV from the body -- in short, a cure. Those hopes foundered on the discovery that HIV, which integrates itself into a patient's own DNA, hides in so-called "sanctuary cells," where it lies dormant yet remains capable of reigniting an infection.

But that same year, researchers discovered that some gay men astonishingly remained uninfected despite engaging in very risky sex with as many as hundreds of partners. These men had inherited a mutation from both their parents that made them virtually immune to HIV.

The mutation prevents a molecule called CCR5 from appearing on the surface of cells. CCR5 acts as a kind of door for the virus. Since most HIV strains must bind to CCR5 to enter cells, the mutation bars the virus from entering. A new AIDS drug, Selzentry, made by Pfizer Inc., doesn't attack HIV itself but works by blocking CCR5.

About 1% of Europeans, and even more in northern Europe, inherit the CCR5 mutation from both parents. People of African, Asian and South American descent almost never carry it.

Dr. Hütter, 39, remembered this research when his American leukemia patient failed first-line chemotherapy in 2006. He was treating the patient at Berlin's Charité Medical University, the same institution where German physician Robert Koch performed some of his groundbreaking research on infectious diseases in the 19th century. Dr. Hütter scoured research on CCR5 and consulted with his superiors.

Finally, he recommended standard second-line treatment: a bone marrow transplant -- but from a donor who had inherited the CCR5 mutation from both parents. Bone marrow is where immune-system cells are generated, so transplanting mutant bone-marrow cells would render the patient immune to HIV into perpetuity, at least in theory.

There were a total of 80 compatible blood donors living in Germany. Luckily, on the 61st sample he tested, Dr. Hütter's colleague Daniel Nowak found one with the mutation from both parents.

To prepare for the transplant, Dr. Hütter first administered a standard regimen of powerful drugs and radiation to kill the patient's own bone marrow cells and many immune-system cells. This procedure, lethal to many cells that harbor HIV, may have helped the treatment succeed.

The transplant specialists ordered the patient to stop taking his AIDS drugs when they transfused the donor cells, because they feared the powerful drugs might undermine the cells' ability to survive in their new host. They planned to resume the drugs once HIV re-emerged in the blood.

But it never did. Nearly two years later, standard tests haven't detected virus in his blood, or in the brain and rectal tissues where it often hides.

The case was presented to scientists earlier this year at the Conference on Retroviruses and Opportunistic Infections. In September, the nonprofit Foundation for AIDS Research, or amFAR, convened a small scientific meeting on the case. Most researchers there believed some HIV still lurks in the patient but that it can't ignite a raging infection, most likely because its target cells are invulnerable mutants. The scientists agreed that the patient is "functionally cured."

Caveats are legion. If enough time passes, the extraordinarily protean HIV might evolve to overcome the mutant cells' invulnerability. Blocking CCR5 might have side effects: A study suggests that people with the mutation are more likely to die from West Nile virus. Most worrisome: The transplant treatment itself, given only to late-stage cancer patients, kills up to 30% of patients. While scientists are drawing up research protocols to try this approach on other leukemia and lymphoma patients, they know it will never be widely used to treat AIDS because of the mortality risk.

There is a potentially safer alternative: Re-engineering a patient's own cells through gene therapy. Due to some disastrous failures, gene therapy now "has a bad name," says Dr. Baltimore. In 1999, an 18-year-old patient died in a gene therapy trial. Even one of gene therapy's greatest successes -- curing children of the inherited "bubble boy" disease -- came at the high price of causing some patients to develop leukemia.
[Chart]

Gene therapy also faces daunting technical challenges. For example, the therapeutic genes are carried to cells by re-engineered viruses, and they must be made perfectly safe. Also, most gene therapy currently works by removing cells, genetically modifying them out of the body, then transfusing them back in -- a complicated procedure that would prove too expensive for the developing world. Dr. Baltimore and others are working on therapeutic viruses they could inject into a patient as easily as a flu vaccine. But, he says, "we're a long way from that."

Expecting that gene therapy will eventually play a major role in medicine, several research groups are testing different approaches for AIDS. At City of Hope cancer center in Duarte, Calif., John Rossi and colleagues actually use HIV itself, genetically engineered to be harmless, to deliver to patients' white blood cells three genes: one that inactivates CCR5 and two others that disable HIV. He has already completed the procedure on four patients and may perform it on another.

One big hurdle: doctors can't yet genetically modify all target cells. In theory, HIV would kill off the susceptible ones and, a victim of its own grim success, be left only with the genetically engineered cells that it can't infect. But so far that's just theory. All Dr. Rossi's patients remain on standard AIDS drugs, so it isn't yet known what would happen if they stopped taking them.

In 1989, Dr. Rossi had a case eerily similar to the one in Berlin. A 41-year-old patient with AIDS and lymphoma underwent radiation and drug therapy to ablate his bone marrow and received new cells from a donor. It is not known if those cells had the protective CCR5 mutation, because its relation to HIV hadn't been discovered yet. But after the transplant, HIV disappeared from the patient's blood. The patient died of his cancer 47 days after the procedure. Autopsy tests from eight organs and the tumor revealed no HIV.

Write to Mark Schoofs at mark.schoofs@wsj.com
Corrections & Amplifications

The Foundation for AIDS Research, which uses the acronym amFAR, is the name of the nonprofit group cited in this article. The name of the group was incorrectly given as the American Foundation for AIDS Research.

Looking for a book to read???

Today, I'm sharing Joe's Book List. He wanted to keep track of the books he read following his diagnosis. The list isn't complete... as Joe read a few more books that he didn't get a chance to add to the list. But, I've chosen to present the list as is.

The books that are highlighted are ones that Joe particularly enjoyed.

It's a pretty eclectic list - there should be something for everyone on here.

Fiction

1. Angels and Demons (Dan Brown)
2. “B” is for Burglar (Sue Grafton)
3. Christ the Lord (Anne Rice)
4. The Solitaire Mystery (Jostein Gaarder)
5. Middlesex (Jeffrey Eugenides)
6. Waiting (Ha Jin)
7. The Curious Incident of the Dog in the Night (Mark Hadden)
8. The Lake House (James Patterson)
9. Hide and Seek (James Patterson)
10. 1st to Die (James Patterson)
11. The Surgeon (Tess Gerritsen)
12. Harvest (Tess Gerritsen)
13. Body Double (Tess Gerritsen)
14. Chill Factor (Sandra Brown)
15. The Secret Life of Bees (Sue Monk Kidd)
16. The Red Tent (Anna Diamant)
17. Bleachers (John Grisham)
18. Time Traveler’s Wife (Audrey Niffenegger)
19. Case Histories (Kate Atkinson)
20. The Kite Runner (Khalid Husseini)
21. Interpreter of Maladies (Jhumpa Lahiri)
22. Extremely Loud and Incredibly Close (Jonathan Saffran Foer)
23. The Bonesetter’s Daughter (Amy Tan)
24. My Friend Leonard (James Frey)
25. A Million Little Pieces (James Frey)
26. Their Eyes Were Watching God (Zora Neale Hurston)
27. The Five People You Meet in Heaven (Mitch Albom)
28. The Thanksgiving Visitor (Truman Capote)
29. The Mysteries of Pittsburgh (Michael Chabon)
30. Espresso Tales (Alexander McCAll Smith)
31. The Devil Wears Prada (Lauren Weisburger)
32. A Prayer for Owen Meany (John Irving)
33. The World According to Garp (John Irving)
34. Life of Pi (Yann Martel)
35. Slow Man (J.M. Coetzee)
36. No Country for Old Men (Cormac McCarthy)
37. Balzac and the Little Chinese Seamstress (Sie Dajie)
38. Maybe a Miracle (Bryan Strause)
39. Blindness (Jose Saramago)
40. House of Sand and Fog (Andre Dubus III)
41. The Memory Keeper’s Daughter (Kim Edwards)
42. Harry Potter and the Order of the Phoenix (J.K. Rowling)
43. Harry Potter and the Half-Blood Prince (J.K. Rowling)
44. A Lesson Before Dying (Earnest J. Gaines)
45. No-No Boy (John Okada)
46. A Thousand Splendid Suns (Khalid Husseini)
47. The Namesake (Jhumpa Lahiri)
48. The Best of O. Henry (O. Henry)




Nonfiction

1. The Great Influenza (John Barry)
2. Kitchen Confidential (Anthony Bourdain)
3. Al on America (Al Sharpton)
4. The God Factor (Cathleen Falsani)
5. The Case for Christ (Lee Stroebel)
6. It’s Not About the Bike (Lance Armstrong)
7. Flags of Our Fathers (James Bradley)
8. Marley and Me (John Grogan)
9. The Tipping Point (Malcolm Gladwell)
10. Stiff (Mary Roach)
11. My Struggle with Faith (Joseph Girzone)
12. Freakonomics (Steven Levitt and Stephen J. Dubner)
13. Fast Food Nation (Eric Schlosser)
14. Guns, Germs, and Steel (Jared Diamond)
15. Collapse (Jared Diamond)
16. The Pursuit of Happyness (Christopher Gardner)
17. Night (Elie Weisel)
18. Bringing Down the House (Ben Mezrich)
19. Tuesdays with Morrie (Mitch Albom)
20. Now I Can Die in Peace (Bill Simmons)
21. City of Fallen Angels (John Berendt)
22. Without Pity (Anne Rule)
23. Every Breath You Take (Anne Rule)
24. The World is Flat (Thomas L. Friedman)
25. Running with Scissors (Augusten Burroughs)
26. Magical Thinking (Augusten Burroughs)
27. Possible Side Effects (Augusten Burroughs)
28. A Child Called “It” (David Pelzer)
29. Myths, Lies, and Downright Stupidity (John Stossel)
30. The Year of Magical Thinking (Joan Didion)
31. The Rape of Nanking (Iris Chang)
32. Jesus Land (Julia Scheeres)
33. Dave Barry’s Money Secrets (Dave Barry)
34. Dave Barry Hits Below the Beltway (Dave Barry)
35. In a Sunburned Country (Bill Bryson)
36. A Walk in the Woods (Bill Bryson)
37. The Life and Times of the Thunderbolt Kid (Bill Bryson)
38. A Short History of Nearly Everything (Bill Bryson)
39. Three Weeks with My Brother (Nicholas Sparks and Micah Sparks)
40. Why Zebras Don’t Get Ulcers (Robert Sapolsky)
41. A Hidden Wholeness (Parker Palmer)
42. Spontaneous Healing (Andrew Weil)
43. Complications (Atul Gawande)
44. Naked (David Sedaris)
45. Amazing Grace (Eric Metaxas)
46. Mere Christianity (C.S. Lewis)
47. Me Talk Pretty One Day (David Sedaris)
48. The Art of Happiness (HH the Dalai Lama)
49. Nickel and Dimed (Barbara Ehrenreich)
50. A Peace to End All Peace (David Fromkin)
51. A Long Way Gone: Memoirs of a Boy Soldier (Ishmael Beah)
52. Blink (Malcolm Gladwell)
53. Hate Mail From Cheerleaders (Rick Reilly)
54. Why Do Men Have Nipples? (Mark Leyner, Billy Goldberg)



Books I’m working on

1. Paradise (Toni Morrison)
2. Snow (Orhan Pamuk)
3. The Art of War (Sun Tzu)
4. Andrew Carnegie (David Nasaw)
5. Dry (Augusten Burroughs)
6. From Paris to the Moon (Adam Gopnik)
7. The Shipping News (Annie Proulx)
8. The Hotel New Hampshire (John Irving)
9. The Wisdom of Crowds (James Surowiecki)
10. Go in Peace: A Gift of Enduring Love (Pope John Paul II)
11. Crossing the Threshold of Hope (Pope John Paul II)
12. The Road (Cormac McCarthy)
13. The Echo Maker (Richard Powers)
14. The Happiness Hypothesis (Jonathan Haidt)
15. Snow Flower and the Secret Fan (Lisa See)
16. Stumbling on Happiness (Daniel Gilbert)
17. The Looming Tower (Lawrence Wright)
18. Dispatches From the Edge (Anderson Cooper)
19. The Known World
20. I Thought My Father was God

Pray...

Please pray for Erica and her family. I have no idea how you should pray. I just know that my heart is heavy... and they could sure use a whole lot of prayer right now.

Happy Halloween!

Be safe!

For Immature Audiences Only...

***If you are mature... or if you don't think that talking about poo is funny, PLEASE STOP reading now. This post is not for you. Don't say that I didn't warn you.***

As many people have pointed out in recent weeks, I haven't posted in a long while. I just haven't had anything interesting to share. Or, I did, but didn't want to share with the masses. Or, I had too much to share and didn't know where to start.

So today I'm posting some silliness, just to let everyone know that I'm still here and doing quite well. Really and truly.

Joe and I were quite the immature couple. We were like two little kids, giggling about things kids find funny - like boogers and toe jam. And we also both agreed that poo jokes are funny. Told ya we were immature. With that in mind, today I will be sharing three things related to poo. :)

1. Shortly after Joe died, I adopted his phone. When I open it up, his photo smiles back at me with the message, "You Can Do It!" It always makes me smile and gives me strength. Anytime Joe was feeling discouraged, I would exclaim, "You Can Do It!" Sometimes, I'd invent a ridiculous dance for him to do too. And sometimes... he even did it!

A couple months ago, I was going through the different menus on the phone. I discovered something that I had forgotten about: Voice Memo.
While Joe was sick, he started reading voraciously. When we were out, if he came across a book that sounded interesting, he would go to Voice Memo and record the title and author so that we could see if the library had the book.

I started listening to all of the Voice Memos.

When I got to the message recorded at 9:24am on November 24 (2006) I started giggling.

Joe started it.

The memo says, "The Tao of Pooh by Benjamin Hoff."
The recording is only four seconds long, but Joe starts giggling one second in... all because Pooh (as in Winnie the Pooh) sounds like poo. I don't think Joe ever did end up reading the book. But the recording never gets old. I laugh every single time I listen to it.

2. I have this habit of saying, "sigh" out loud instead of actually sighing. The thing is, the Taiwanese word for 'poo' sounds an awful lot like the word 'sigh.' Every single time I said, "sigh"... and I mean every single time... (either because I never got smart enough to stop, or because I unconsciously wanted to let my husband have his fun) Joe would say, "Ewwwwwwwwww! You said poo!" :)

3. Joe and I were fans of the television show, Scrubs. Our all-time favorite episode was the musical episode. Our favorite song from the episode was... "Everything Comes Down to Poo." Listen to it. It's hilarious. While I could say... unfortunately, the song became a reality for us. I would rather say... fortunately, the song enabled us to laugh at the reality of things we experienced. And that's the truth.

As an added bonus for my immature audience that read through this whole post. I'm going to share our second favorite song (by just a hair) from the musical episode of Scrubs, "Guy Love."

Desert Song - Part II

Ray passed this along to me. Since it connects to my previous post (from oh so long ago) I wanted to share it here as well. I could relate to so much of what Jill said... makes the song lyrics more meaningful.

Desert Song

The main reason for my recent trip to Toronto was to visit my dear friend Sheena. Yes, the Sheena who opened her apartment to me while she was in the 'burgh and Joe was in the hospital. I've been blessed with amazing friends. She is one of them. Sheena is real.

...I was going to get preachy...but I'll save that for another day. :) (Stop laughing, Sheena!)

While in Toronto, Sheena, Ray, and I attended the Hillsong United Conference. It was this incredible time of praise and worship. Imagine hundreds and hundreds of people filling up a convention center and praising God. A lot of the people were in high school and college, which made us feel old and young all at the same time.

College is really when my faith blossomed. I'm not exactly the same girl now that I was back then. Back then, I was hyper, loud, and bounced off of the walls. (Only the people who knew me then and now can properly recognize that I've mellowed out a bit.) It didn't happen immediately, but at some point I became such a "Jesus Freak" that I'd go up to almost anyone and say, "Come to church!"
"Join the choir!"
"Praise God!"
"Wake up at the crack of dawn and pray with us!"

Yeah...I was pretty intense. In fact, that Karen would likely scare the living daylights out of the present day Karen. One thing has remained constant though...my faith. There have been days when I have felt so incredibly lost and alone that I have questioned my unwavering faith.
"My world has crumbled around me, why in the world am I still trusting in God? Am I just that dumb and naive?"

I don't really have a good answer for that. All I know is that I needed to have faith. I need to have faith. As much as it doesn't make sense - it's the only thing that does make sense. I could ramble endlessly about the cruelties of life. I could proclaim, "Woe is me." I could play the role of poor, poor widow very well. In fact, I've done all that - not proudly. But, I need to believe that there is a reason for all of this. I need to believe that there is a greater purpose in all of this.

I believe that it's my faith that has carried me through the worst days of my life. It is what enabled me to face my grief head-on. It is what transformed my pain into peace and my fear into excitement. It is what allowed me to feel blessed rather than persecuted.

So I found myself at this conference (that's how I started this whole post, remember?). It was such a wonderful experience. It felt like this perfect way to end this year of grief. For the first time in a long time, I found myself really letting go and praising - not just singing. It was so freeing.

I learned several new songs. One of them became my new theme song. Actually, it became a favorite for all three of us...

Desert Song
words & music by brooke fraser

This is my prayer in the desert
When all that's within me feels dry
This is my prayer in my hunger and need
My God is the God who provides

This is my prayer in the fire
In weakness or trial or pain
There is a faith proved of more worth than gold
So refine me Lord through the flame

I will bring praise I will bring praise
No weapon formed against me shall remain
I will rejoice I will declare
God is my victory and he is here

This is my prayer in the battle
When triumph is still on its way
I am a conqueror and co-heir with Christ
So firm on his promise I'll stand

All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

This is my prayer in the harvest
When favour and providence flow
I know I'm filled to be emptied again
The seed I've received I will sow

~~~

"Only you can take the widow's cry
And cause her heart to sing"
~ from the song 'Solution' by Hillsong United

One Year

It's been one whole year since my beloved Joe died. What a privilege to love him and be loved by him. He was sweet. He was kind. He was silly. I don't think he had an enemy in the world. He was that lovable. Today, I'm sharing a slide show that our friend Vivian created for his funeral service. It really shows what a joy Joe was.

I know that Joe is going to be waving his terrible towel and cheering up a storm up there in heaven today. GO STEELERS!!!!!!

Ann & Christine

Ann is having a second transplant today. Please keep her and her husband in your prayers...

Christine's sister's cancer has relapsed. It seems so unfair how often cancer keeps striking this beautiful family. Keep them in prayer...

Dream

Last night I had a dream about Joe. I had a dream that he made a miraculous recovery. We were so happy and ran around celebrating for days. We were so happy we forgot to update our blog. People were still sending their sympathies while we were partying. Oooops.

When I woke up from this dream, I was surprised to find that I wasn't sad. I was just happy that I kind of had a few extra days to be with Joe.

The truth is, I've been really happy this past month. Ever since I left Chicago (I guess I haven't shared about that yet...) I have felt this incredible inner peace. My future still holds many unknowns, but my fear has transitioned to excitement. It's a strange feeling for sure - which would explain the tears I mentioned in my last post. Throughout this past year I've had plenty of happy moments, but I haven't actually been happy. If I had too much time to think, I would get sad. If I kept myself busy, I still returned to an empty home and I would get sad. I would sit by myself and feel lonely. I would surround myself with people and still feel lonely. It was a challenge to be real with people, because too often it seemed I would get some pat, generic response. Other times, I would feel smothered with too much concern. Then one day, I woke up and realized that I was happy. Truly, genuinely happy. There is a bit of guilt that creeps into this kind of happiness. Am I disrespecting Joe by being happy? Am I forgetting him? Clearly, the answer is no - although processing and accepting this is still difficult. But, Albert said, "We have been through so much, I think we're entitled to happiness." I'm O.K. with that.

Sunday, September 7 will mark one year since Joe died. That magical one year mark. The day that the world expects you to turn off your grief once and for all and never turn back. Somehow it sounds logical to people, "Well, you can finally move on now." Or, "Well, you have to move on now."

I don't actually believe in grief rules set by anyone. I don't believe in time lines. I don't believe you must be sad at every milestone. I don't believe that tears and sharing stories necessarily means you are holding on too tight. I don't believe that being happy and having fun necessarily means you are running away from grief. I don't believe that you must have alone time or you must surround yourself with people. It truly is a different process for everyone, and I think respecting those differences is important.

Anyway. Right now, I am happy. Yesterday, I was reading some of the cards that Joe sent me over the years, and they made me laugh. I can't believe I had the amazing privilege of being married to him. I feel so blessed.

It's a little early, but I really want to thank everyone for supporting me through this roller coaster ride. Every day I am amazed by how faithful so many of you have been. You have been so generous with your love, time, support, and patience. In my effort to be real about my feelings and experiences, I know that I've talked a lot about DGIs and people saying stupid things. The truth is, the love I've felt has trumped all that stuff I vented about. I wouldn't be where I am spiritually, mentally, and emotionally if I didn't have the amazing support that I have. I really am blessed.

Chop chop

In May 2006, I donated my hair to Locks of Love. It was something that I had wanted to do for years. I knew several people who had already done it - some more than once. Yet, every time I tried to grow my hair out, I would get impatient and end up chopping it off before it was long enough. In 2006, one month before Joe was diagnosed, I finally did it. Joe totally proved that bald is beautiful. Women like Erica have also proven that bald is beautiful. Not all women diagnosed with cancer are prepared to embrace this side-effect though. Cancer is hard enough as it is. With that in mind, I decided after Joe died that I was going to donate my hair again. It's actually the funnest way to make a donation. You get to help someone, and you get a makeover. It's a win-win situation. This time, I decided to donate to Pantene Beautiful Lengths.

I got my hair cut in Toronto. There was no reason for it. I was just up there with friends and it seemed like a fun thing to do. Plus, for my own personal reasons, I wanted to do the chop close to the "one year mark." My friend Cynthia decided to donate too. She had beautiful waist length hair, and donated a foot. Her new 'do is totally hot, don't you think?

I feel like I'm always giving speeches and telling people what to do. But seriously, I know so many people who have happily donated their hair. If you've been blessed with beautiful, long tresses, think about it. It's fun!

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...