A Pack of Light Junkies

ProjectPink|Sandy|ByStephenPaige
Photo by Stephen Paige

Ann shared so much with her husband Sandy and that clearly included the gift of writing. Below is Sandy’s essay published today on Facebook.
–Linda

A Pack of Light Junkies

During the week of Annie’s services eight weeks ago, my people and I stopped for music in two of the pedestrian tunnels in our town. I put our pack there for a reason. We paused for musicians playing Annie’s tunes there, we held hands and we cried in these dark tunnels together. We wrung out our emotional mops, dried ourselves off and emerged as a pack from the other end of the tunnel where the light was brighter, warmer, drier and sweeter. As we are still doing now, each day, little by little.

In near death experiences, we often hear about the “light at the end of the tunnel.” It turns out that’s not just for the dying. Those who survive, people in grief like me and my pack, we look for that light at the end of our own proverbial tunnels. Sometimes we think we see it but it goes out. Sometimes we actually see it and it’s really there, like the horizon 30 minutes before sunrise, we reach for it, desperately hoping to turn up an imaginary dimmer switch.

Sometimes we move ahead too soon. Like the Susan G Komen event I went to yesterday. Too soon for all that positivity and all those survivors. “99% survival rates” blasted over speakers by people like my Annie of 2011. I blew the horn for the 5K and blew to the car, skipping the rest of the races. So happy for all those survivors, so desperately wishing for faster deliverance from my despair. Needing a fresh hit of that sweet, forbidden light. Other times we run ahead in the tunnel, delighted to breath the fresh air, drinking it in and bathing in it, injecting ourselves with the future. It tastes so sweet that we don’t want to return to the tunnel where we still belong.

The challenge for me is about prioritizing, sorting and preserving the memories. How to filter them, keep some, let others go. Keep enough that I don’t lose her, but let enough go that I’m not carrying her like an elephant on my back. I can’t live in a museum or shrine to her — living amidst the pictures, videos and relationships dedicated to the preservation of her Wonderful Life. I hate the feel of her sand slipping between my fingers and trailing behind me as I trod on, as I inch towards the light at the end of my own tunnel. That feels disrespectful, yet I know otherwise. The light tells me so. My pack reinforces it.

Eight weeks out and I know the light is there. I have seen enough of it to be sure, it is a good pain killer. It now tugs at me, dangerously whispering that if I have some I’ll feel better. Despite my addiction, I know, in my intellectual heart, that I can’t start racing towards it. I have to trod forward, backtrack when necessary, occasionally leapfrog forward for some joy . . . but not hurry there. As our pack metabolizes our grief in our tunnels, the light becomes less about pain killing and more about hope. Our glasses are getting more half full.

So it will be for me and my pack of light junkies.

Mothers Day, 2014

Posted May 11th, 2014 by
A Pack of Light Junkies
Posted in: Sandy's Diary
TAGGED WITH:

Ann Murray Paige

Anna Kuperberg Photography

It took some time for me to make this entry in the Project Pink Diary, as if, by letting Ann’s last diary stand, I could pretend for a moment, that she was already at work on her next entry. In the weeks, months, and years to come we will keep Ann’s positive spirit alive on this page. It is our challenge to ourselves, affirmed by Ann’s husband Sandy. –Linda

This is an excerpt from the eulogy Sandy delivered at Ann’s Celebration of Life:

Annie’s casket was made by Mike Fields, one of the most

unselfish demonstrations of love I’ve ever seen, and we left it

unfinished so we can finish it with our love today. Sometime

before you leave, go see it, grab a sharpie and tell her why you

love her. I figured that would be better than lacquer or stain.

This week has been about sharing in Annie’s memory. A

serious, collective celebration of her life. My goal here today

isn’t to heal, isn’t even to preach. I will meet you where you

are – and, I know, this is a tough place to meet. I want to share

my perspective on the wonderful woman I married in 1997 in

Shrewsbury, MA. But, I am not going to blow sunshine up all

these pretty dresses and tell you everything is going to be okay,

blather on about how the hurt will pass. That will take care

of itself in time. As we did last night in her Irish Wake, we are

going celebrate, remember, and I hope to give us all some tools

to carry her spirit forward.

Spiritual Pixie

Let’s start with something fun. So much of Ann was just her

spirit. Even when her body left her, her spirit fought on. And

we all want to capture that spirit and soak it up . . . that’s why

we’re here. So, let’s actually do that. Put your hands in front

of you, drop the best parts of her into it. Now on the count

of three, let’s toss the contents of our hands into the air. And

when we do it, let’s all reach up and grab some, and place over

our hearts. Now you get everybody else’s piece of Ann, too.

And you can take that with you.

History

Born outside Boston in 1965, raised in Shrewsbury, MA.

Attended Boston College and Emerson for graduate studies.

We met in the Maine State House while she was on the news

beat, fell in love, married, had two fabulous kids and lived in

Maine until moving to CA in 2008. She was a great journalist,

but never comfortable covering the murder and mayhem

that was required of a beat reporter. I still remember well the

night she camped out to speak with the poorly treated Spanish

workers of an egg farm in rural Maine. She knew it was good

journalism, but hated it. She wanted to tell stories of strength

and humor – stories that made people smile.

And I could talk about her full life up to 2002, had she

been struck by lightning I could have given her eulogy

then and it would have a fabulous life. By then we had two

amazing children and that, in itself, remains our greatest

accomplishment.

Cancer

But in 2003/4 she got cancer, but she also got new meaning.

She found herself in new and important ways. In fact, it’s a big

part of why we are all here. Ann and Linda Pattillo put together

The Breast Cancer Diaries and traveled the country sharing it

with audiences. It has since traveled the world, been translated

into new languages, and even today has legs which are truly

profound.

California

In 2008 we moved to California, in part at least, to heal

emotionally from the treatments but also to find her some

space. And in that healing process, in this new land of

opportunity, she found voice . . . . as well as her favorite place.

It is where she decided to write and self-publish Pink Tips and

make it available on Amazon, where she wrote a One-Woman-

Show, where she found her soul mates. It is where the non-

profit Project Pink began to come alive.

Sure, breast cancer killed her. But didn’t it also save her? Ann

found her lost voice through cancer. And here in Davis, she

found an un-biased audience for her heart.

Let’s face it: Ann could be drawn like an emotional moth to

the most tragic of flames, she sought out the most difficult

moments, captured them, embraced them, spoke through

them and to them. She cried when she saw the homeless.

She hurt watching old people struggle. She had emotional

transparency, depths of highs and lows, that even now astonish

me.

Lows, and HIGHs.

How many of us will remember her

contagious laugh, the silliness, the margaritas, the last minute

texted invites to drinks and potluck dinner at the Paiges where

everybody showed up? Everybody showed up.

So Annie will lie in rest here in Davis, the place she was

happiest during her life. And in the most fitting closure, she will

rest in a plot at the feet of an 8 year old boy she never knew,

but with whom she shared the deepest, most personal love.

It is so tempting to be drawn in to the chasm of darkness that is

our sadness and grief today. And, perhaps because we had so

long to prepare, she knew this would happen to us . . . and she

gave us guidance – through her actions and words. I want to

share them, I want to give us some tools to carry forward.

Tool 1: Show Up

This one is the first and it is also the hardest. Even Ann, who

did this better than anybody, was not perfect at it. But she will

lay to rest with at least this on her gravestone. Show up. It

means more than it seems, take the phrase apart over time

and you’ll hear more and more meaning in it. It’s not simply a

question of being physically present, in some ways that’s easy.

Showing up is emotionally risky, it can make you vulnerable,

but it will always make you stronger. Try it in your marriage.

Use it in your friendships. Use it in your work. You will never,

ever go wrong by showing up. Meeting people where they are

emotionally. Showing up means trying to do the hard stuff.

You don’t have to do it right every single time, there’s always

tomorrow, but it means you show up whenever you can.

Christopher … you are already showing up. I have never

been prouder of you than over the last 10 days. You have

opened your heart to the world, with square shoulders and big

embrace, wiping tears and helping friends and family cope. And

you are just 14. Keep showing up like this and you will make

mom and me very, very proud.

Show up.

Tool 2: Half Full

This is from Ellie, who held out longer than anybody for a

miracle and reminded me so many times that I needed to see

mom’s fight glass as still half full. And I cherish that love and

that optimism more than anything. Thank you for being so

persistent.

So today, and tomorrow . . . and forever more . . . when you

grab a glass of wine or beer or juice or water, fill it half full. See

the top half, the one that appears so empty, see it with our

spiritual pixie bouncing around the inside, challenging you to

see the top half as opportunity, not emptiness.

Annie got a terminal cancer diagnosis 3.5 years ago, but lived

her life half full to the end. 48 hours before her death, when

she couldn’t stand without somebody on each arm, she could

barely form words anymore, but the words she formed that day

were “TAKE ME TO SPIN CLASS AT FITHOUSE.” She could barely

stand. She could barely speak. But she could still dance. Her

glass, more than anybody’s on this green, was nearly empty. Or

was it?

The volunteers pouring wine, water, lemonade and beer behind

you are instructed to fill the glasses half full. Start practicing

today.

Half Full.

Tool 3: Walk in Ann’s shoes

So . . . Ann had a bit of a shoe problem. Of course, like most

addicts, she did not see it as a problem. As her therapist on this

issue, I should have been fired, disbarred, my license revoked. I

failed in my interventions and the addiction continued.

I really want us all to walk in her shoes – figuratively, of course.

Think about how hard it was to do what she did. We called her

Superwoman, but she had no superpowers. She put one foot

in front of the other, pants on one leg at a time. What am I

asking? To the doctors in the crowd, walk in your patient’s

shoes. To the lawyers, be your client’s true advocate. To the

teachers, feeling that child’s pain, struggling with Geometry.

Walk in their shoes.

And . . . if you are a size 6.5 or 7, why don’t you ACTUALLY do

it. On the way out, there are about 50 pairs of Ann’s shoes.

I invite you to take a pair, just one pair, for yourself or for a

daughter or granddaughter whom you know they will fit. But

they really need to fit. Not just in the foot, but also in the heart.

This isn’t an opportunity to collect a piece of Ann, because

it comes with responsibility. These shoes are like the ruby

slippers in the Wizard of Oz. You may only wear them to do

good works. You must explicitly be thinking of Annie and doing

something for others.

And because not everybody is a size 6.5, if you’d like to come

as close as you can to Annie’s shoes, visit The Wardrobe in

downtown Davis. Heather and her friends will find something

for you, as close to Annie’s tastes as possible in shoes, hats

or the many other things which Annie loved in Heather’s

shop. And when you buy something in Annie’s memory at the

Wardrobe, some of the proceeds will help Project Pink.

But your obligation doesn’t just stop with wearing the shoes

and doing good work . . . you must tell others about what you

did. Write on FB, tweet about it. Call me. Call others. You can

have a pair of her ruby slippers if you promise to wear them in

her honor, share the good works you do. Find your tin man . . .

and give him life.

Walk in her shoes.

Tool 4: Wear her ring.

Our marriage was always public property. From our first date,

when we couldn’t have dinner without being mobbed, to the

documentary when I returned home to find a video camera

in the corner of our bedroom. To the blog I opened at work

one day . . . where she wrote about dragging me to a marriage

therapist. I knew that publicity was the price of admission to

her life.

The day we got engaged on Togue Pond in Baxter State Park

in northern Maine, I was not prepared. I had no ring. I had

something more important, though, I had Veuve Cliquot. So

we celebrated, and I slipped off to the woodshed. I took my

leatherman and pulled a nail from a piece of kindling and

formed a crude ring. She wore it. And she cherished it. And she

is wearing it now.

But not before I had a cast of it made – and some sterling

silver poured into it. We got an exact replica. Last week, in her

final hours, I slipped sterling silver copies on her fingers and

gave them to Christopher and Ellie the moment she passed.

They wear them now, too. And this week I gave sterling silver

copies of that ring to some of her closest friends. But that’s not

enough. The public property of our successful marriage offers

another opportunity, perhaps a glass half full. I want you all to

share in that cast, the cast sits in the safe at DeLuna’s Jewelers

here in Davis. She was tough as nails. And you can be too.

So if you want to share in it, go to DeLuna Jewelers in Davis.

Or call them. Tell them you want a copy of Ann’s nail ring,

tell them how you’d like to use it. They have the cast and

permission to use it – to fill it with anything other than sterling

silver. The silver is only for us. Try platinum for your wife. Try

the special allow for your second grade teacher. Try 10 or 14

carat gold. Have them make you rings, necklaces and earrings

from her nail ring and some of the benefits will fall to Project

Pink.

Ann was tough as nails – and a sterling silver friend. You can

be, too. Just drop by or call DeLuna’s, ask about Ann’s nail ring.

They’ll find a way for you to share in her beauty.

Honestly, one of the beauties of Annie was she had a purity to

her. Almost naivete in her willingness to trust, to embrace and

to join with others. And in her humility, she underestimated

herself, always. I am certain she is as overwhelmed by the

response over the last week as I am. The calls, texts, emails and

tears from around the globe have proven her reach to be far

more extensive than any of us knew.

It is often that you don’t know what you had until it is gone.

This is just not one of those times, is it?. We know very well

what’s missing. And that’s why it’s so darn hard. So let’s

not wallow in our grief. Let’s fight for her, not just Ann the

individual, but the Ann the spiritual pixie, Ann’s values, Ann’s

soul. And in doing so, we’ll get some emotional and spiritual

justice from this tragedy and we’ll carry her forward on our

shoulders, in our shoes, in our glasses, or on our fingers. This

week, and last night, the Davis community has joined hands,

simply refusing the let the memory of Annie fade. Time will do

what it must, but we will do our part to maintain the splendor

of her legacy.

What can you do?

You can Show Up.

You can keep your glass Half Full.

You can walk in her Shoes.

And you can wear her Ring.

I dare you – I DARE you — to see if it won’t improve your life,

and the lives of those around you, forever.

We love you, Annie. We won’t forget, I promise.

Sandy Paige

—-
Donations to Project Pink can be sent to:
Project Pink
245 N. Highland Ave.
Suite 230-271
Atlanta, GA
30307

Posted April 3rd, 2014 by
Ann Murray Paige
Posted in: Linda's Diary, News

Ann’s Diary: Uncle Phil

I was talking with my girlfriends the other day when one of them said, “we never said ‘I love you” growing up in our house”. I sat there and thought, “huh: we kinda never did either.”

It was the sign of the times I suppose– a 70′s kid being raised by someone born in the 1920′s, at least in my house. My assumption is that it was implied: I’m your parent, therefore I love you. And I’m sure I heard it a few times, it’s just that my memory doesn’t remember that far back. I would say it to other people, though– as a kid you do that. Or at least I did that. But in the general family, it wasn’t the norm to leave off a phone call and say “love you.” We just weren’t like that.

What I can remember is bringing the spoken form “I love you” into my life–full force. I was probably 15, and we’d just come back from a Murray Family Reunion. My Dad had 7 kids in his family originally, and I think there were 5 of them there. With their kids…and their kids…it was a mini-family circus under a beautiful sun. I for one had a total blast. When it was over, we headed home to my family’s house about an hour away, bringing my Uncle Phil and Aunt Anne Marie with us. I loved all of my uncles for different reasons. With Uncle Phil it was his amazing humor. He had me laughing a mile a minute. I can still see his blue eyes shining and twinkling as he’d make a joke or pull a stunt on me and my sister. He was pure fun.

The night we came home from the family reunion, we all gathered in the living room to watch old family slides. (Kids: those are stamped-sized photos on film that need to be splashed on a wall with a light and a really good magnifying machine called a projector.) We’d ordered pizza, and we were all laughing and joking, when Uncle Phil made fun of me in one of the photos. I don’t remember what he said, all I know is in my teenaged angst and anger at being made fun of, I simply stood up and stormed out of the room. Everyone called for me to come back, including Uncle Phil, but I tossed my hair and went straight to bed. To Hell with them, I thought, this will teach them. I’ll just leave! And I headed off to bed.

A little time later, I was awoken by rattling sounds coming up the stairwell. I jumped out of bed and looked outside into the bright hallway to see EMTs taking my precious Uncle Phil away on a stretcher. He was alert but breathing hard from an oxygen mask. I was crushed and my parents were trying to keep my in my room until the EMT’s left. It was the worst night of my young life. I have tears in my eyes as I write this—about 3 decades later.

I awoke to the news that Uncle Phil had died of a heart attack overnight. And I knew what I’d done. I had left that group of fun and family frolic: tossed my hair at them all because of something silly. And now Uncle Phil was dead. And his last words he ever heard from me were some fitful stupid teen blather–and now he was gone forever.

About a week after the funeral, I knew I couldn’t get Uncle Phil back, couldn’t change what I’d done…..but I could START doing something new. And from then on, any time I got on a phone with someone in my family and the call ended, I’d say “love you.” I will never forget the awkwardness in speaking those words–and wondering if my parents would think I was a weirdo. The first time I said it to my Dad, to end our phone conversation, there was absolute silence. I almost felt bad for springing it on him. Eventually he murmured an “.uh….okay”. And we hung up.

I’m happy to say I’ve kept up that tradition for more than 30 years of my life–and almost always when I whisper it, or shout it, to someone dear to me I take a moment of thanks and gratitude to my Uncle Phil, who in leaving this life for the next taught me a lesson that has made my life richer and fuller than it ever could have been otherwise.

Thank you, Uncle Phil. I love you.

Posted February 22nd, 2014 by
Ann's Diary: Uncle Phil
Posted in: Ann's Diary

Ann’s Diary: The Gifts

Some 3 decades after it was filmed, I finally watched the 1980′s movie “Say Anything.” It was adorable in the 80s way–sweet, non-complicated, hidden twist, and young love–without anything blowing up or me needing to go on Google to search something that leads to one big twist that I typically don’t understand nor want to. Living with cancer, I need the soft stuff to help cushion my shredded barrier that once kept the “oh that would never happen to me” away.

This morning I’m thinking about the movie, and how the boy was so nice, and the girl was so sweet, and how they were just trying to be good to each other. Without the cheating, the lying, the immaturity and the teen angst that is the reality of life outside the computer/movie screen. And I think I am focusing on that not because I think a “Say Anything”-style love can be achieved (I know a few who’ve been together since high school, but a spare few. It’s not typical of marriage in the 21st Century) but because as a child and in my teens I really WAS thinking, ‘Oh that’s gonna happen to me!’ The good stuff, of course, just the good stuff.

As I grew up, I was very romantically immature. I wouldn’t have known how to let down a guy if he was sitting on a stair chair at the top of the stairs and there was just one button to push. I hurt a lot of guys by never being able to properly explain myself or even knowing what my real reasons were; mostly I just turned and fled. NOT a good game plan. But it was the only one I knew.

As I look down the road of “Who Knows What’s Gonna Happen” I feel the urgent need to fill in some of these blanks with my kids. No one uses movies and books as a source of reality–at least not on their outside. But on the inside, things were always brewing in my mind. I never talked about it, but I’d be watching flicks thinking ‘Maybe my news director, who’ll look like Robert Redford, will guide me from being a small producer to a big-time anchor! Or.’.. maybe a guy will chase me from high school graduation all the way until I go to college; and along the way, he’ll save me from myself and be the most trustworthy guy in the world! ‘ (I had a guy when I was 29 literally jump off a porch, chase me down and romance me so hard over 3 weeks that I broke up with the guy I had just started dating. Guess what? 3 weeks later, that guy dumped me for his old girl friend. Now there’s a fairytale.)

So I’m the one that, when my kids would watch Cinderella would say as the credits rolled “Now remember guys, that’s a movie. It’s words someone wrote on a (then) piece of paper. And those voices are actors. Life doesn’t work like that.” And back then I’d throw in an age-appropriate kicker, like “you have to know someone” or “it’s hard. It just is. And some stuff makes no sense.”

That of course rolled into, “what is the point of life, anyway, Mum? What are we doing here?”

And I would always, to this day, answer them like this:

“Life is about giving out your gifts. I don’t know what they are, and at this point you may not have discovered them either. But you have gifts, from learning and sharing you gift of music, to bringing a smile to a sad person’s face by just acknowledging them when you walk into a room, to maybe being the best doctor, business owner, teacher, tennis coach, –whatever. And you have many more, too. Life goes forward. Not backward. You don’t look back and say “I should have..” You say, “I think I’m read for…” and then DO IT.”

And never give up. There’s my affinity for Winston Churchill coming out again, because that’s his quote. But many use it. Many look into the low end of a toilet bowl as they are letting go of whatever is in there because of chemotherapy and between each wretch think “I can’t give up. I still have gifts to give.”

You can imagine the conversations that happen in my house. I don’t have them often because it’s pretty heavy over here under our roof these days. But there’s no time like the present as someone said, and for me the blessing is that I still have a present to be in. And I’m gonna “be” as long as I can, still seeking out the gifts I’m supposed to be giving while I’m here.

I hope you have that same game plan in mind for your many years to come.

Posted February 7th, 2014 by
Ann's Diary: The Gifts
Posted in: Ann's Diary

Ann’s Diary: World Cancer Day 2014

I was getting out of the shower this morning–well, it might have crested noon by that time–when a good friend texted me and said, “It’s World Cancer Day. Feel like blogging?”

I didn’t know it was Tuesday, much less World Cancer Day, and I stood and looked at the text. Just half an hour earlier, wrapped in my bathrobe that I couldn’t get out of this morning, I had said to myself, “You haven’t blogged in a long time, Ann.” But the thing about my blogging is I don’t blog until I feel like I have something to say. And not a whining thing–a real thing. A thing you and I might actually get something from…

…and there will be thousands of articles about WCDay today anyway. So what’s the point.

That’s not unlike what I’ve been feeling about this whole metastatic-cancer-in-brain-in-lung-try-this-new-chemo-which-makes-you-sick life I’m leading right now. What is the f-ing point of this? What if I just stopped all the chemo and said F it. Clearly the C is in the lead and Ann’s life-as-she-knew-it is in the ash can. What if I just tossed all the bags and the pills out the window and let the clock run down?

These are simple questions that fly around my room like rabid bats, occasionally getting tangled in my mind. Letting the clock run down means countdown to no more Mum, no more wife, no more pals, no more me. I think of that one and I think ‘why wouldn’t the world want me here?’ Like I just told a friend who emailed me with her condolences, “I just keep asking the universe, are you SURE you want me gone? Because this world does not seem full of positivity. I can bring that, you know. I’ve been doing that. Are you sure you want that voice to be silenced?”

And then I go the other way: what if I just keep up like this? Pills every day, setting up meetings with friends (for walks), losing weight, fighting for my day so that I don’t lose another one sitting in bed. Every day I live now is dedicated to NOT letting cancer take me before I’m gone. It’s a boatload of work and it’s no fun–but I’m doing it.

Still the questions….

So…if I have two green smoothies instead of one per day, will that help? If my trainer volunteers (which she has) to come by each day and help my lung capacity get stronger with easy exercises, will that help? If I have 4 bags of saline….if I eat pineapple seeds….or jalapeno pepper seeds…flax seed oil (which I’ve taken for years), Graviola leaves (check), no-dairy (check), meds from the docs (check)…..it’s exhausting. Everyone it seems has “the cure” for cancer, but claims an industry/government conspiracy of repression to keep it from us. That’s some dedicated, organized, well-managed industry/government work. If they could transfer that ability to Capitol Hill, oh what a world this could be.

So back to World Cancer Day. As usual, I am so happy that groups everywhere, like this one, shed a spotlight on this stupid, life-leaching, long-going, determined-to-kill bastard of a disease. I thank all of you from the bottom of my breaking heart for caring.

But if you really want to do something for those of us in the battle, or those who are going to be, do it soon. Some of us are going….much faster than we ever expected. If you need any extra reasons, think of any little face you see, boy or girl, and think–”I could save him/her.” And if you need a Real Big Reason for helping crush cancer, think of what I told Tyler Jacks, Director of the Koch Institute for Integrative Cancer Research during the “Women on the Frontlines Fighting Breast Cancer” Conference at MIT last fall when he asked me:

“Ann, you have a lot of medical people in the room, researchers, educators: What is the one thing you want them to know, the one thing (modified here because my memory is bad) that could make their practice better? ”

And I said, “Cancer has changed. It’s sneaky. It’s no longer just after the fast food eaters, the smokers and the women over 60. It’s after all of us. If there’s one thing that you can do to make you practice better, it’s to treat your patients like humans. They weren’t stupid, they didn’t overindulge or forget their almonds or ignore the gym. New cancer patients are some of the healthiest people out there–until they find (in my case) a lump. So Tyler, I guess my advice to all medical people is this:

to make your practice better, every time you open that patient door to see another frightened face on the other side, whisper to yourself “there but for the Grace of God go I.”

It’s compassion that will make us all feel better as we fight for our lives and you try to smother this world cancer beast–once and for all.

This blog is dedicated to Chris F.

Posted February 4th, 2014
Posted in: Ann's Diary