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To Life…

I don’t have any tattoos.  I have never thought of something I wanted on me permanently…maybe until now. I think I am going to get “To Life” tattooed on me….because, that is how I feel…we are here to raise our proverbial glasses “To Life” in whatever way that looks to you.

My mother worked at a hospital for years.  I often would go visit her and have lunch.  It was a big hospital with a big cafeteria.  It would be full of busy people going about their business…trying to get some food in them on their short break.  Every now and again when I would be in the hospital eating with her, they would call a “Code Blue”.  When they did you would see a group of people jump up and run…I mean straight up run…out of the cafeteria.  They would leave their belongings, their food, they would all go running in one mass of hope and help to who was crashing.

We humans have a hard time getting along.  We have all sorts of different values, different things that are important to us, different hopes, dreams, wants, desires…but in that moment…code blue…all of that is gone.  It doesn’t matter if you are so hungry your stomach hurts and you were going to get to eat finally…it doesn’t matter if you were on the phone with someone you wanted to talk to…nothing matters at all except that this person is dying and needs help NOW.  There is a singular clarity of vision that always brought tears to my eyes.  To Life.  Go.  To Life.

That is how I feel about doing hospice work.  I don’t do it because I pity people.  I do it because I want to run when they call a code blue and we all drop our differences and become one united force “To Life”.  In the hospital they wanted to save people, in the work I do, I cannot.  That is OK.  Life here is not the most important thing to me, doing what is ours to do while we are here is.

I believe, with all my heart, I am here to help people with death…and that has manifested in all sorts of ways in my life.  One of which is my hospice work.  I know there is nothing to fear in death…I know we are never alone…I also know that we are human beings who are wired to fear death…this is so we keep ourselves alive when we can, not because there is actually something to fear. So I can sit with people who are dying and hold that space for them…the knowing space…because my knowing in that doesn’t waver.  So I am a hospice vigil volunteer.  In hospice we don’t want anyone to die alone…so when someone is actively dying and they don’t have anyone to be with them, or their loved ones can’t do it (which is ok), they put out a vigil call.  Then the vigil volunteer goes and sits with this person in shifts.  With the singular purpose of them not dying alone.

The other area of hospice that I felt pulled to is to help people “do things”.  I have responded for hospice requests to help people write letters…do that one thing they want to do.  What can be more important than that?  To be able to help someone at the end of their life do the thing that is most important to them?  My friend who used to be a hospice nurse told me of how she went to visit a young woman who was dying.  Her whole life was riding horses and now she was close to death.  She just wanted to ride again.  So my sweet, brilliant, dear friend who has seen all too much pain and death in her life herself got the woman up on a horse….she then got on the back of the horse to hold the IV bags of pain meds.  She held the bags and cords and the woman…and they rode.  She died the next day.

I feel the strong pull of a code blue in my life right now.  I made a friend on fb not long ago.  Patrick.  Patrick has ALS.  The ALS has progressed to the point that he can’t move…but we can still talk.  He has an eye tracking computer.  I can tell you I love Patrick.  I barely know him but I can feel he is a kindred spirit.  He is making a movie of his life since diagnosis and wants to finish it before he moves on to the next leg of his journey.  He has a young son and wants to leave this for him.

CODE FUCKING BLUE.

This is also personal to me.  I cannot say I know what it feels like to be him right now…to have ALS.  I hope I never do…I hope one day none of us do.  But I can tell you that in my own way, in my own life, I know what it feels like to not be able to have a voice.  I will be one of the people speaking for my friend Patrick for as long as he needs me too.  This code blue is personal to me.  He is living his life, in the face of death, with humor and hope and joy.

I have asked people to donate money to help him finish his movie often here.  I am going to ask you again.  If I have ever made you smile, or laugh, or moved you in any way and you have a few dollars you can give him so he can “ride his horse” before he goes, I am out right begging you to donate.  And if you don’t want to donate, no guilt…but can you share his link?  Can you think about if you know other places to share his story?  If you don’t have money to donate you can help be his legs…just share his story.  You never know who it will reach….I am raising my glass to Patrick…To Life…which surely doesn’t end when we are done with our bodies here…To Life…

CODE BLUE

http://www.rockethub.com/projects/27882-everything-will-be-okay-an-epic-documentary-about-als

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I often say that my purpose here on Earth is to live my life out loud.   There is a light in me that I can keep hidden inside or can share with the world. I am here to share that light with the world.

When I do this…share my light with the world…it makes some people uncomfortable.

Unfortunately from a young age I internalized their confusion.   This created a lot of pain and doubt in me…I thought if people have a problem with me, there must be something wrong with me…something wrong with who I am.  I can see very clearly now that there is nothing “wrong” with me and there never has been.

People have asked  “Who is she to act like that?  Who is she to do what she does?”

Those have been good questions for me to ponder…just who am I to do what I do?  To live and love so loudly?  To act like I’m so special?

The answer has become so clear to me this past week…I am special.  How dare I not share that with the world…but you needn’t be threatened by that because YOU are special too…yes you.

I would encourage you to find that special part of you…find what you are here do to and do it.  Let your light shine…it’s the most important thing you’ll ever do…

Carpe Diem Anna

My best friend Ingrid died when we were 12.  While she was riding her bike, she was hit by a mail truck.  She died at the scene of the accident.

Ingrid called me that day.  She had just gotten her hair cut…short.  She didn’t like it.  She was calling to ask me to come to her house to see her haircut…to comfort her with my friendship.  I said I didn’t feel like it…and asked her to come to my house instead.  Then she died a block from my house.

I have never wanted my kids to ride bikes.  It makes me sick to my stomach to think of them riding their bikes out there in the world, all the uncontrollable variables…all the danger.  My son has never had any interest in it.  I have wondered…did I subconsciously give him this message?  My husband says no…it’s just who my son is.  He doesn’t like those kinds of things.  I don’t tell my son this, but I have always been very grateful that he doesn’t like riding a bike.  My daughter on the other hand…she likes everything like that…everything active, fast, alive.  She is 4 and lives her life out loud.  The question is, will I encourage her to?  Or will I try to keep her safe and in doing so rob her of her life?

My hope has always been that I will encourage her to live her life out loud…that is in my heart.  I long for them both to live their lives…I guess as long as it doesn’t involved bikes or anything dangerous.

The video below just really shifted something in me.  What a great lesson Anna had to teach us.  I am determined to think of Anna when my kids want to “ride off” and tell them “Carpe Diem!”.   I will smile as they ride off to live their lives and know I am doing the right thing…no matter how scared I feel inside.

Anna also inspired me.  Where in my life do I need to ride off and do something that might be scary but is my life’s path?  I shall keep Anna’s message close to my heart when thinking about that…because not only do I want my kids to see me encouraging them to live their lives out loud…I want them to see me living mine the same way…to do what is mine to do.  Carpe Diem.

“Gather ye rosebuds while ye may to seize the day because you never know when you will be called to be foods for the flowers…”  ~Anna

To see with new eyes…

My daughter Maggie is four years old.   At the end of every bath she takes, when the water is going down the drain,  she yells to me  “Mommy!  Mommy!  Hurry!   Look!”  And every time I get down on my knees and look at what she is seeing.   She is laying down on her stomach watching the little whirlpool that swirls around when almost all the water is out of the bath tub.  She is amazed by this.  It brings her such joy.

Many times I am busy trying to “get something done”.   I find it hard to stop and look sometimes because  I need to “finish” what I’m doing.   But one time recently when she showed this to me…I really heard what she was saying.  She was telling me to look at the water with new eyes.  I have seen the whirlpool that happens at the end of a bath many times in my 43 years, but I had forgotten how amazing it truly is.

I do not believe in the Bible literally, but for me, there are some great Truths in the Bible…if we remember they are stories and meant to make us think.   Matthew 18  1-5 says:

1  At that time the disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?” 2 He called a little child to him, and placed the child among them. 3 And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. 4 Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. 5 And whoever welcomes one such child in my name welcomes me.

I see great Truth in this passage.  The kingdom of heaven is within us.  It is the ever present center of us…peace, calm, love, joy.   I think we come into this world knowing this Truth.  We see the world through the eyes of a child.  Every single thing is amazing to us…a miracle.  Then we start to forget.  We forget and start to think that the business of life is more important then what is all around us.  The miracles of life.   When we stop and remember, we are seeing through the eyes of a child…and being centered…feeling the kingdom that is always within us.

Maggie was reminding me to see with new eyes…to again let myself see the beauty and miracles all around me.  The more I do this…see with new eyes…the more awe I feel…the more joy I feel…the more connection I feel…the more I live in the moment…and that is the kingdom of heaven…right here…within us all.

the magician’s nephew…

i have been reading The Chronicles of Narnia to my kids.  we read The Lion, the Witch and the Wardrobe first…then we realized that c.s. lewis wanted them read in a different order then the one he wrote them in.  he wanted The Magician’s Nephew to be read first…so we read that one next.

i have really been moved by the 2 books we’ve read.  they are so beautiful and contain such truth in them…deep truth and beauty.  so far The Magician’s Nephew is my favorite.  i teared up this morning when we read the last two chapters.  i explained to my children that some people cry when they are touched…when something is so beautiful to them, it moves them to tears…this moved me to tears…

“Both the children were looking up into the Lion’s face as he spoke these words.  And all at once (they never knew exactly how it happened) the face seemed to be a sea of tossing gold in which they were floating, and such a sweetness and power rolled about them and over them and entered them that they felt they had never really been happy or wise or good, or even alive and awake, before.  And that memory of that moment stayed with them always, so that as long as they both lived, if ever they were sad or afraid or angry, the thought of all that golden goodness, and the feeling that it was still there, quite close, just round some corner or just behind some door, would come back and make them sure, deep down inside, that all was well.”

and that’s the truth…

my wish for my children is that they live their lives out loud…

when ever i think about that, i always remember an essay i read years ago by Robert James Waller.   he is most known for writing “The Bridges of Madison County”.  the essay is called “Excavating Rachael’s Room” and is in a book of essays he wrote called “Old Songs in a New Cafe”.   it moves me every time i read it.

Excavating Rachael’s Room by Robert James Waller

“Like some rumpled alien army awaiting marching orders, the brown trash bags hunker down on the patio in a column of twos. A hard little caravan are they, resting in sunlight and shadow and caring not for their cargos, the sweepings of childhood and beyond.

With her eighteenth birthday near, Rachael has moved to Boston, leaving her room and the cleaning of it to us.

After conducting a one-family attempt at turning United Parcel Service into something resembling North American Van Lines, we gather by the front door early on a Sunday morning.

Besides the suitcases are stacked six boxes, taped and tied. In my innocence, I tap the topmost box and ask, “What are these?”

“That’s stuff I couldn’t get in my suitcases last night; you guys can send it to me,” she replies, rummaging through her purse. Out of habit, I begin a droning lecture on planning ahead, realize the futility of it, and am quiet.

She has a deep caring for the animals and purposely, we know, avoids saying good-bye to them, particularly the small female cat acquired during her stay at camp one summer, years ago.

The cat has shared her bed, has been her confidant and has greeted her in the afternoons when she returned from school. Good-bye would be too much, would bring overpowering tears, would destroy the blithe air of getting on with it she is trying hard to preserve.

We watch her walk across the apron of the Waterloo airport, clutching her ticket, and she disappears into the funny little Air Wisconsin plane.

Turning, just as she left the departure lounge, she grinned and flashed the peace sign. I was all right until then, but with that last insouciant gesture, so typical of her, the poignancy of the moment is driven home and tears come.

We hurry outside and stand in hot sunlight to see the plane leave. I note that we have never done this before, for anyone.

Clinging to the heavy fence wire along the airport boundary, I watch the plan take off to the west and make a last allegoric circle over Cedar Falls. East she travels and is gone, disappearing in the haze of an Iowa summer.

Back home, beer in hand, we sit on the porch, listening to the hickory nuts fall, recounting the failures and remembering the triumphs.

For the 500th time in the last eighteen years, we describe to each other the night of her birth, how she looked coming down the hall in Bloomington, Indiana, hospital gurney in her mother’s arms. How we felt, how we feel, what we did and didn’t do.

We take a few days off, just to get used to the idea of there being only two of us again. Then, tentatively, we push open the door to her room.

The dogs peer into the darkness from around our legs and look up at us. The room—well—undulates. It stands as a shrine to questionable taste, a paean to the worst of American consumerism. The last few echoes of Def Leppard and Twisted Sister are barely audible. Georgia sighs.

I suggest flame throwers coupled with a front-end loader and caution the cleanup crew, which now includes the two cats, about a presence over in one of the corners. Faintly, I can hear it rustle and snarl. It is, I propose, some furry guardian of teenage values, and it senses, correctly, that we are enemies.

Trash bags in hand, we start at the door and work inward, tough-minded.

“My god, look at this stuff; let’s toss it all.”

The first few hours are easy. Half-empty shampoo bottles go into the bags, along with three dozen hair curlers, four dozen dried-up ball-point pens and uncountable pictures of bare-chested young men with contorted faces clawing at strange-looking guitars.

Farther into the room salvage appears: the hammer that disappeared years ago; about six bucks in change; fifty percent of the family’s towel and drinking-glass stock; five sets of keys to the Toyota. More. Good stuff. We work with avengeance.

Moving down through the layers, though, we begin to undergo a transformation.

Slowly, we change from rough-and-tumble scavengers to gentle archaeologists. Perhaps it started when we reached the level of the dolls and stuffed animals. Maybe it was when I found “The Man Who Never Washed His Dishes,” a morality play in a dozen or so pages, with her childhood scribblings in it. In any case, tough-mindedness has turned to drippy sentimentality by the time we find the tack and one shoe from Bill, her horse.

I had demanded that Bill be sold when he was left unridden after the five years of an intense love affair with him were over. That was hard on her, I know. I begin to understand just how hard when Georgia discovers a bottle of horsefly repellent that [Rachael] kept for her memories.

We hold up treasures and call to each other. “Look at this, do you remember…?”

And there’s Barbie. And Barbie’s clothes. And Barbie’s camper in which the young female cat was given grand tours of the house, even though she would have preferred not to travel at all, thank you.

My ravings about the sexist glorification of middle-class values personified by Barbie seem stupid and hollow in retrospect, as I devilishly look at the cat and wonder if she still fits in the camper. “Here kitty, kitty….” Ken is not in sight. Off working out on the Nautilus equipment, I suppose. Or studying tax shelters.

Ah, the long-handled net with which Iowa nearly was cleared of fireflies for a time. “I know they look pretty in the bottle, Sweetheart, but they will die if you keep them there all night.”

Twister—The Game That Ties You Up in Knots. The ball glove. She was pretty decent at first base. And the violin. Jim Welch’s school orchestra was one of the best parts of her growing years.

She smiles out at us from a homecoming picture, the night of her first real date. Thousands of rocks and seashells. The little weaving loom on which she fashioned pot holders for entire neighborhoods. My resolve is completely gone as I rescue Snoopy’s pennant from the flapping jaws of a trash bag and set it to one side for keeping.

We are down to small keepsakes and jewelry. Georgia takes over, not trusting my eye for value, and sorts the precious from the junk, while I shuffle through old algebra papers.

Night after night, for a year, I sat with her at the kitchen table, failing to convince her of the beauty to be found in quadratic equations and other abstractions.  I goaded her with Waller’s Conjecture: “Life is a word problem.”  Blank stare.

Finally, trying to wave hope in the face of defeat, I paraphrased Fran Lebowitz: “In the real world, there is no algebra.”

She nodded, smiling, and laughed when I admitted that not once, in all my travels, had I ever calculated how long Smith would need to overtake Brown if Brown left three hours before Smith on a slower train. I told her I’d sit in the bar and wait for Smith’s faster train.

That confirmed what she had heretofore only suspected—algebra is not needed for the abundant life, only fast trains and good whiskey. And, she was right, of course.

The job is nearly finished. All that remains is a bit of archiving. I have strange feelings, though. Have we sorted carefully enough? Probably.

Georgia is thorough about that kind of thing. Still, I walk to the road again and look at the pile. The tailings of one quarter of a life stacked up in three dozen bags. It seems like there ought to be more.

When I hear the garbage truck, I peer out of an upstairs window in her room. The garbage guys have seen lives strung out along road edges before and are not moved. The cruncher on the truck grinds hair curlers and Twister and junk jewelry and broken stuffed animals—and some small part of me.

She calls from Boston. A job. Clerking in a store, and she loves it. We are pleased and proud of her. She’s under way.

The weeks go by. Letters. “I am learning to budget my money. I hate it. I want to be rich.”

She starts her search for the Dream in a rooming house downtown and finds a Portuguese boyfriend, Tommy, who drums in a rock band and cooks Chinese for her. Ella Fitzgerald sings a free concert in the park. The cop on the beat knows her, and the store is crowded with returning college kids late in a Boston summer. Here in the woods, it’s quieter now.

Her room has been turned into a den. A computer replaces curling irons and other clutter on her desk. My pinstripes look cheerless in her closet where pink fish-net tops and leather pants once hung.

Order has replaced life. I sit quietly there and hear the laughter, the crying, the reverberation of a million phone calls. The angst of her early-teen existential crisis lingers, drifting in a small cloud near the high ceiling.

And you know what I miss? Coming home and hearing her say, “Looking pretty good, Bob! Got your suspenders on?” She could make a whirring sound just like the motor drive on a fine camera. Those few moments of irreverent hassle every day are what I miss most of all.

Regrets? A few. I wish I had walked in the woods more with her. I wish I had gotten mad less and laughed longer. Maybe we could have kept the horse another year.

Victories? A few. She loves the music and the animals. She understands romance and knows how to live a romantic life. She also has the rudimentary skills of a great blackjack dealer.  I sent her off with that instead of luggage….

She has her own agenda. She’s had it for years. It’s not my agenda, not what I would choose, but then she has a lot more courage then I do. She’s out there on her own, cooking on a hot plate in a Boston rooming house, pushing and shoving and working and discovering. My respect for her escalates. She’s going to be all right.

And I know I’ll sit on the porch as autumn comes this year and other years, in some old sweater with some old dreams, and wonder where she goes and how she goes.

I hope she goes where there’s laughter and romance, and walks the streets of Bombay and leans out of Paris windows to touch falling January snow and swims in the seas off Bora Bora and makes love in Bangkok in the Montien Hotel.

I hope she plays blackjack all night in the Barbary Coast and, money ahead, watches the sun come up in Vegas. I hope she rides the big planes out of Africa and Jakarta and feels what it’s like to turn for home just ahead of winter.

Go well, Rachael Elizabeth, my daughter. And, go knowing that your ball glove hangs on the wall beside mine, that Snoopy’s pennant flies bravely in the old airs of your room, that the violin is safe, and that the little cat now sleeps with us at night but still sits on the porch railing in the late afternoon and looks for you.”

one of my favorite shows on tv is on the sundance channel.  it’s called “iconoclasts”.   it’s an interview show of sorts.  two “iconoclasts” (” a term that has come to be applied figuratively to any person who breaks or disdains established dogma or conventions”)  kind of interview each other.  the show is just brilliant.  the most recent one i saw was the magician david blaine and the artist chuck close.   i had never heard of chuck close before.  i was very touched and inspired by his story.  a few days later i started leafing through a book i bought a long time ago.  it’s called “the right words at the right time” by marlo thomas and friends.  she asked people to “reach back into their own lives in search of that moment when words made all the difference.”  then published the responses she got from various famous people.  i shared paul mccartney’s response in a previous post.  here is what chuck close had to say…from the book “the right words at the right time”.

Chuck Close

Artist

“Handicapped people hate phrases like physically challenged.  We like to call ourselves cripples and gimps.  It helps take the sting out of it. It helps us accept the handicapped part of us.

I became a quadriplegic thirteen years ago, at the age of forty-eight, when an artery in my spine collapsed. I had already had a great career as an artist, with paintings in museums around the world.  I knew who I was. The problem was getting back to what I loved.  The two great fears of any artist are that you’re going to lose your eyes or you’re going to lose your hands.  I always thought of them as equally bad.  Turns out if you’re going to lose one, it had better be your hands.  Which is exactly the way of thinking that helped me in my life, weighing out what makes any situation positive relative to another state of affairs.

My father died when I was eleven, so I think I learned early on that you could suffer a terrible tragedy and still be happy again.  We didn’t have any money but my father was extremely handy and he made all my toys-bicycles from scratch, model trains.  It was very intimidating because he could do anything with his hands.

I’ve always been a gimp in some sense.  When I was a kid I had a lot of problems.  Back then no one thought there was such a thing as learning disabilites.  You were just dumb, or lazy, or a shirker.  I couldn’t memorize anything, didn’t know the multiplication tables, didn’t know how to add six and seven without using my fingers.  I couldn’t even recognize faces.  I was a klutz.  My eyes didn’t converge enough for me to catch a ball.  But art gave me something that made me feel special.  Probably had my father lived, I might not have even tried a lot of projects, but when he died I inherited his tool kit and all his power tools and I got started trying to make stuff myself.

After I suffered the artery collapse, I wasn’t sure how I was going to be able to go back to work.  Lying in the hospital bed, I thought maybe I would have to be a conceptual artist.  I got enough movement and then thought, well, I can paint holding a brush in my teeth.  Eventually I could move my arms a little bit.  I remember my wife and my occupational therapist got me this device to hold a brush.  They put a piece of shirt cardboard in a vise and I tried to draw a grid on it to divide the space into smaller, more manageable sections.  I was totally exhausted.  I mixed some paint and jabbed a stroke at the painting and said, “See, I can’t do it!”

I started crying.  But there was a little piece of me that thought, well, you know, it doesn’t look that bad. My assistant tells me I cried every day I painted in the hospital.  I don’t remember that at all. I just remember those words coming to me when I thought I was lost. “It’s not that bad.”

I’ve been very lucky all along.  People think that if you’re in a wheelchair and you have to paint with brushes strapped to your hands, “luck” is not a word you should be using.  But I am fortunate in many ways. When you’re a gimp, you don’t envy able-bodied people.  You envy people who are one notch above you.  Quadriplegics envy paraplegics.  I look at someone like Chris Reeve; he was dealt a much more devastating blow.  He must look at me and think, well, it’s like he has a hangnail.

I’m not a hero.  I have a wife who fought for me, and I’m an optimist by nature.  But that’s not all it takes.  You have to be lucky with your body, too.  I don’t believe in the punish-the-victim mentality I saw in the hospital.  This was the notion that if you didn’t get better it was because you didn’t have the right attitude. But, you know, life isn’t always fair.  Some people in the hospital refused to go to therapy and would lie around and whine and be shitty to the nurses and they got better.  And some other people had wonderful attitudes, worked their butts off, but didn’t get better at all.

In life, you have to deal with your fear, the part of you that says, “I can’t do it.” You have to rely on the part of you that says, “Well, it doesn’t look that bad.” And you have to keep going even though there are no guarantees.  I’ve found a way to work for myself by breaking everything down to the smallest pieces.  I just keep working at each little unit of the painting.  Today I’ll do what I did yesterday and tomorrow I’ll do what I did today, the same thing in pieces small enough for me to handle.

For people who are handicapped, if you can keep from being destroyed by what happened, or pigeonholed by what happened, you’re certainly going to be different, but you have a chance to be more interesting as a person, because you’re not like everybody else.  I know a lot of people who are paralyzed in other ways, even if they can walk.”

-Chuck Close

amen to that…and i needed to read that again right about now…i find his philosophy very applicable to life…”breaking everything down to the smallest pieces”, making something that seems unmanageable, manageable, your job, your life, your day…keep on keeping on.  people amaze me. and i find it interesting that the “right words at the right time” in his story were spoken by him.  he said the right words to himself.

here’s a video of him that shows some of his paintings.  they are quite amazing.

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