Being public

I haven’t posted in several years.  It’s not because I haven’t been writing; I have a Notebook in which I write frequently.  It’s because I struggle with the value of being public.

I’m on Facebook.  My good friend J rants that Facebook posts are so shallow.  He wants to see substance; he wants his friends to share their feelings, not their cat pictures. I hear him, and yet it horrifies me to imagine putting the things I write in my Notebook OUT THERE. Facebook is the online equivalent of small talk at a cocktail party. I like to stay in touch with a friend from high school, but don’t want her to know my innermost secrets. Social media has its purpose, but I get tired of cocktail parties after about thirty minutes.

Besides, everyone knows the potential dangers of being too free with your online self. Identity theft, jobs lost when employers read your Facebook page, and those annoying ads that pop up for about a week everywhere you go, after you’ve searched for a product. Now, those creep me out, and make me believe that if I mention the word “anarchy” in a post, the FBI or some shady group will start watching me.into me see

So why post anything online?  Well, what am I seeking when I go online? Information. Education. Inspiration. Connection. Entertainment. Sometimes purchasing. I think those are about the same reasons most people turn on their computers.

If I’m to keep a blog going, why?  Am I doing this to satisfy a need in myself? If nobody ever reads what I’ve written here on WordPress, will that satisfy my need to be public (assuming I do have a need to be public) or do I want people to read it? If I don’t care if anybody reads it, why put it out there, why not just keep it in my Notebook? The act of writing what’s really inside me has kept me sane and free all these years already.

What do I think I might provide to the world?

I used to believe I could change the world. Now I think I just want to bring encouragement and sense of “me too” to a few people, the way they’ve been given to me over the years. Where would I be if Anne Lamott and Joni Mitchell hadn’t gone public with their words?

How much “into-me-see” is safe in public?  And is there any value to writing in public if you don’t let yourself be seen into?

 

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Doing the next right thing, part 2

I heard about a man who escaped the World Trade Center six minutes before it collapsed.  A firefighter threw himself on top of the man to protect him.

The man had been on the 87th floor and began running down the stairs when he realized the elevators weren’t working.  For some reason he left the stairwell on the 28th floor and saw three women in an office, looking out the window.  As he approached them, they parted, to show that they were gathered around a woman in a wheelchair.  He quickly grasped that these women weren’t leaving; they were staying with their friend.  The man picked up the woman in the chair and began carrying her down the 28 flights.  All the way down, firefighters were passing them, running up, shouting encouragement to them to keep going, they would make it.

There are a lot of heroes in this story.  I want to write about a misconception I think a lot of us have about heroes.

I grasp somewhat how donating a kidney must look to others.  They’re incredulous, almost starstruck.  Keep calling me a “hero”.  I imagine they’re probably asking themselves, “Could I do that?” and answering “No”, and that’s what makes them conclude that what I did is sort of superhuman.  Just the same way as I look at the people who did extraordinary things on September 11.

Here’s my take on this, so far.  Every human is given a sphere of influence.  Not a great name for it but I can’t think of anything better at the moment.  Like we walk through life with a space around us that is ours to affect for good, to do our best in.  All God asks of us is to keep our eyes wide open, our ears wide open, our hearts wide open, and do the next right thing as it gets presented to us.  It always seems like the natural response, like “of course”, like “that’s easy”.

Someone looking in from the outside thinks what you’ve done is extraordinary.  You feel a mild shock and embarrassment.  Because you know that all you’ve done is the next right thing in your sphere of influence, that zone that’s been given to you.  How would you react if I called you a hero for visiting your mother, for “liking” someone’s Facebook post, for smiling at the cashier, for not complaining about your back pain today?  I think you might say, “Why that was no big deal.”

And that’s the truth:  it is no big deal for you to do the next right thing given to you.  But in another way, it’s also the biggest deal of all, because life is the biggest deal we have, and you’re living it as God, who is Love, placed you here to live it.  The satisfaction, joy and gratitude in that is, at the same time, the most common, everyday feeling and the highest sense of fulfillment.  That’s the hero’s reward, to feel God saying, Well done.

Heather and her need came into my sphere of influence.  From the start, it was always the most natural thing, the logical next step, to give her my kidney.  This particular act must not have been in anyone else’s sphere; God has given you other things to do:  like living day by day with MS, the black dog of depression, a dying spouse or brother, the inability to conceive, the pain of divorce.  Those are a few of the things some of you are living with, and they boggle my mind.  I say to myself, “No way could I handle that with the grace he’s showing”; “She’s way more of a hero than I ever could be.”

Many of the first responders on 9/11 said, in response to being called heroes, “I was just doing my job.”  That’s what I’m talking about.

Let’s all keep admiring and encouraging each other when we spot each other doing that next right thing.  But let’s never hold onto the idea that a hero is someone other than me.

Doing the next right thing

I decided it was time to update my blog.  High time.  The last time I wrote, I was waiting to donate a kidney.  Now, it’s been a year and a half since I did so.

People ask me sometimes how it’s going with one kidney, and I always say, “Everything’s exactly as it was before I gave the other one away.”  That’s true on a physical level, since I have no health issues whatever from the donation.  It amazes me sometimes that I’m so healthy, and I guess it proves what I heard a doctor say, “God gave us two kidneys so we could give one away.”

The surgery itself was a major miracle, and yet it was no big deal.  Seattle’s Swedish Medical Center, where we did this, is an old hand at the procedure, and my surgeon, Dr. Chapman, is one of the best in the business.  Heather, the recipient of Sidney and my good pal, spent the night before surgery hooked up to her dialysis machine for 10 hours.  That was the last time she ever needed that thing.  When she went into surgery her creatinine was something like 7.5, and 5 hours later it was something like 2.8.

And Sid’s been chugging away ever since.  She’ll have minor reactions to the anti-rejection meds, but for the most part she’s in the peak of health.

And that’s our physical conditions.  What about the rest of us?

Progress

I made it past the medical review board.  (I picture Inquisitors.  Tall red hats.  Or skinny old women with those lines all around their mouths.)  They loved what my blood pressure medicine has done with me.  On to the next task:  stress echocardiogram and CT scan of kidneys!  May 6 is the day, going to Indianapolis for this one.

This encourages me.  They are taking me seriously.  They want to know what my kidneys actually look like.  Do I have 1 or 2? or perhaps 3?  Are they roundabout the same size?  (Of course they are!  I’m so normal.)

I just want them to accept me.  I know I’m not perfectly slim.  I need to lose 40 pounds.  I’m a chubby healthy person.  Us healthy people come in all sizes, don’t we? or do you have to have no body mass to be healthy?

Bottom line:  I want to give Heather my kidney.  I wish they would let me, and leave the weight issue and my subsequent health up to me.  She needs this kidney now.  Dialysis sucks.

Sidney Kidney

It’s almost a year now since I began the process of trying to donate a kidney to my friend Heather. A year! That seems waaaaaay too long when you’re dealing with life and death issues. But more on that later.

Heather has PKD, a hereditary kidney disease that has gradually eaten away at her physical vitality, stamina and strength.  I emphasize “physical” because this girl’s emotional and spiritual strength is growing daily.   I admire her tremendously.  She doesn’t get out much anymore, but spends her days online at several websites where she lavishes her unique brand of love, wisdom and encouragement on all who visit.

Early on in our friendship, I recognized that this world would take a monumental loss if Heather were to leave it.  Since nobody else seemed to be volunteering a kidney, I figured this honor had been saved for me.  Heather lives in Alaska, where there are no transplant hospitals, and is “on the list” at the nearest one, Swedish Hospital, in Seattle.  This is where we will make the switch, if/when.

Right off the bat, I had trouble getting the donor coordinators to respond to my emails.  A week would go by with no response; I’d send another and usually after a few more days, I’d hear from someone.  This was, and continues to be, greatly frustrating for me.  When I finally began the testing, I did it as quickly as I could.  But the lag time between events is MONTHS.  The rhetorical question I keep asking is:  Do they have kidney donors lined up around the block,  that would justify them delaying as they do? 

Meanwhile in my regular emails from Heather, I’m hearing a deterioration, tests coming back with the numbers worsening.  This week, she has had surgery to implant a catheter so she can begin dialysis.  We were hoping to do the transplant before dialysis came into the picture.  Guess that won’t happen.

Six months ago, they put me on hold.  My blood pressure, at a median of 147/74 for a 24-hour period, was considered too high.  The other block was that Heather needed to be inoculated for hepatitis, which takes 6 months.  (They knew when I started testing that I’d had hepatitis.  Why didn’t they have her start the hep vaccinations then?)  I went on a diuretic for my bp and my doctor likes my numbers a lot.  Heather’s had all 6 shots.  We’re ready to go.

So I email the hospital to get things started again.  Almost a week goes by, I have to send the message again.  Sigh.  I’m told it will take another week before she can present it to the nephrologist, and then more time after that while I wait for the 24-hr bp cuff to be flown here, then more time while they tabulate the results, then more time before the Medical Review Board can look over my case.

One of Heather’s favorite sayings is, “It is what it is.”  She has a lot more patience than I do, and she says this to me when I rant like I just did.

My final fear is that I’ll be rejected because I’m 40 pounds overweight.  At the age of 60, dieting doesn’t work anymore for me.  I managed to get 10 pounds off, and came to a standstill.  Whatever I do to lose weight has to be something I can keep doing the rest of my life, because I’ll need to stay healthy with one kidney.  So, while I could go on the Atkins Diet and probably lose, I can’t live that way (been there done that).

About 9 months ago, I named my kidney, because I liked thinking of him as sort of a superhero, a caped crusader poised to save a life.  Sidney is ready to meet Heather, anytime, anyplace.  Let’s get it on.

Learning to take your own place

“It takes a long time before one learns to take one’s place in one’s own life” Ingaborg Bachmann

Today I wrote out an imaginary conversation between Me and my Fat.   My fat told me that it had been taking a place in my life.  An important, kind and I suppose, necessary place in my life.  The place that a turtle’s shell takes for the turtle.

“The world is a bad place, a bad place, a terrible place to live.  Oh, but I don’t wanna die” – Reflections of My Life, Marmalade

I grew up in a good neighborhood, in a good family, in the fifties.  My parents tried to soften the blow that Marmalade sings about.  But eventually I found out.  And because I’d learned how to soften the blows with comfort foods and elsewise, I kept doing it.

Now I’m almost 60.  Whattyathink, time to be an adult yet?

Time to take my own place in my life yet?  or to continue the half-life inside the shell?

Because Marmalade is only partly right.  The world is also a good place to live.  Beauty, adventure, love, kindness are here as well.  And if I keep my arms & legs inside the shell, I’ll never see them.

To. Be. Continued.

 

I used to be a Christian

But now it’s against my religion. Actually I’ve lost my religion too and that’s really a good thing.

What I gained instead is Love. A whole lotta love. A first-time realization of how God, the Father and the Son, conspired together to bring me back to their heart. It wasn’t easy. God, a Being with no limits, confining himself to a human body. Imagine how that felt.  In that human body, Jesus walking this earth and loving people, one at a time. And gathering up all the wrongness, the shame, the badness, the corruption, in the universe and taking it to death. In exchange for death, making his life utterly available.

In everything God does, there is Love.  Now a lot of the time, I look at this life through love-colored glasses.  Before, when I was a christian, my love glasses were fogged by Performance.  You could get God’s love IF you believed in him.  And that believing had all these strings attached, like you have to go to church,

Auburn Cemetery, Cambridge, MA

you have to read your Bible, you have to say the right buzz words and only listen to the people who say those words.  (Add your own “have to” to the list, every religion has its own set.)

Institutional Christianity likes to say God’s love is a free gift, but then they slap on the exceptions.  Exceptions all have to do with performance, something we must do to entitle us to receive love.  I believe God is Love, period end of story.  God loves every human, every animal, plant, insect, star, galaxy…everything he made and called “good”.  He loves us if we’re good and if we’re bad.  There’s nothing you can do to make God love you more.  There’s nothing you can do to make God love you less.

I have a friend who’s proud to be a christian, and she thinks this love thing goes too far.  I mean, there have to be consequences to sin, right?  God can’t just love everybody because then why would they change their evil ways?  He can’t just hand out his love free to sinners because that would be “cheap grace”.

I used to think that way, too.  I gave it up for Lent.  Then I gave up Lent.