Bonnie Recovery

Road Trip!

A travelog ... written by Bonnie sitting just outside Zion Park enjoying the early morning sun over the red rock mountains. This is a chatty chronicle of our 2010 Western Soujourn so far (now out of CA).

We’ve started the trip back to NC, where we will be by August 7 for the Pollard baptism on Sunday the 8th.  We’ll be there a week before heading out to Boston and Chicago, arriving home sometime after Labor Day.  For now our 7-week Western Sojourn continues.

I was a bit apprehensive this Western trip; at times I just did not want to come.  I had been weak for a couple of months, relying more and more on my wheelchair.  Was I really up to the trip??  Was I strong enough to do the fun things I might.  Ugh.  Daniel and I sometimes don’t get along too well when we drive (I try to navigate even when he doesn't want to need me to).  The trip could be a nightmare “Family Vacation”: what if the car breaks down?  And our plans staying with friends weren’t confirmed.  Being homeless is one thing; being homeless with no temporary home is another for me (though not for Daniel). I worried about how much time we’d have to work on our book.  I’d just settled into a writing rhythm when it was time to start packing.  As I had my worry fantasies about what might happen on the trip, I had to work beyond my energy to get out stuff ready for summer storage in the POD.  Worry, worry.

The “move out” of our very personal stuff from the beach house was  intensive again this year.  Though it was much easier than last year when we were still “moving in” from Cambridge AND moving out for the summer.  The actual work to ready inside the house wasn’t so bad for me: it only took about a week and lots&lots of plastic boxes.  Daniel had the big job.  We’ve accumulated stuff on the downstairs deck that had to be sorted and cleared; the POD was already crammed, even with unpacked stuff from Cambridge.  Those of you who move every few years know the problem:  it is often easier to leave stuff packed, and that is what we’ve been doing since 2008.  (We have had a few priorities like learning to live and walk again and dealing with all the post trauma of my health.)  I can’t say that we really unpacked this time, but the downstairs closets are well organized and the POD moderately so.  It was a big, hot job for Daniel even with some great help from highschoolers.  At one point the situation looked so hopeless that Daniel suggested that we just cancel the trip.

Eric and Ashley came to see us at the beach the day before we left.  We were relaxed seeing that once again we would meet our packing deadline and be able to turn over the house to weekly renters as per our contract.  The great joy of that day was just being with Eric and Ashley whom we considered our own children.  We discussed our book concepts with them and got the best insight and advice.  They helped us see how to vastly simplify our task and get it done sooner.  They showed us how to make it more focused on a market and more coherent.  I slept better that night than I had in months, and since I have experienced only joy when thinking about/working on the book.  Alleluia.

We left on Saturday, June 19  with all goals accomplished and pretty much on time.  We met Jen and the Kiddos at Zac’s baseball tournament in Raleigh, mostly so that I could get Zac’s iPhone to replace temporarily the one I dropped in apple juice.  The best part of ruining my phone is that we had to see them in Raleigh.  Our time there was some of the best of a most enjoyable trip.  I got to play with the kiddos, especially the little ones, in the pool where I am strong and can throw them around and wrestle with them.  What fun, and what a way to start a trip.

We traveled to Chicago where we spent almost a week near Daniel’s mom, Margery.  She is doing fine; most of all she is really enjoying her life.  Despite her disabilities, she is living the life she wants to live right now.  It is an inspiration to see.  She was the age I am now when I first met her.  I want to be as fit as she is if I make it to 89.  Daniel and I are transforming our diet and exercise in an effort to do just that (though right now we are closer to Mom’s current level of fit than we are to who she was 23 years ago).

The saga of “replacing Bonnie’s iPhone” dominated our early trip:  first with getting a temporary phone, then lining up to get an iPhone4 in Chicago (at Apple) then again in Denver (at ATT).  It’s a funny story that I will post before this log so that it appears just after it.  You’ll have to read that account to learn the outcome of our adventures in iPhone4 Land.

We pushed on to see Larry Browning in Crestone, CO.  Crestone is home to 55 spiritual communities of many kinds:  from Carmelite nuns to 3 different Buddhist sects. It’s a magical place below the towering rockies.  We went twice for hot springs and massage and decided to plan our travel west to have more mineral soaks.  Larry was on a deadline to complete authorship of his third book.  Most of the week we were there we sat at our various computers and wrote.  But we had camaraderie in the evenings and at times during the day.  I got a good rewrite of the book intro done; that rewrite proved quite valuable as we solicited input from others about what we are doing.

We were then onto Utah.  Our first excursion to a Utah hot springs was futile... I just could not get up the steep path.  We did score on the one just outside of Zion  It is one of the most mineral rich of American springs.  It did indeed have that mineral effect that changed our moods and aches more that one could expect from temperature alone.  We didn’t get to spend as much time in Zion park as we’d hoped, and so we are now back here again.  This time we are staying near the park entrance and plan to have some good time there -- soon.  Zion has a “wheelchair” path that goes right to the canyon “narrows.”  I’ve become quite adept at pedaling my wheelchair with my feet.  I’m looking forward to the adventure of the day.

I could go on and on about our incredible time with friends in CA.  I spent most of a week in Santa Rosa with Betsy.  We’ve been friends for thirty years; time to simply be together has always been short though.  She introduced me to her (highly successful) dieting style and took me to her YMCA everyday to walk in the warm pool.  Wow.  We were in almost constant conversation (also with her M.D. husband Gene) about the book and Betsy’r experiences over a decade of working with cancer support groups/ Gene’s experiences with patients.  Daniel and I are grateful to have friends whose diverse experience addresses so directly many fields we need to understand as we do this project.

Daniel stayed more with Glenn Edens in his fine home overlooking the SF Bay.  I don’t think I’ve missed living in CA as much as I did when at Glenn’s.  I was reminded of what our daily life was like in CA -- a ongoing conversation about technology, design and business strategy.  I’m in many fine conversations in NC, but none is quite as satisfying as those were to me.  Oh, the life left behind.  How good to be able to drop in and glimpse at it once in a while, to celebrate who we were and who we are.

Laura Dimario and others organized the Interval Research ten years since closing reunion.  About a hundred people came.  Can you imagine it?  Ten years after the demise of a corporation, we are still family.  I’d say more than half of the ex-Intervalians came.  I sat on a picnic table and “held forth”; Daniel circulated.  Wow.  I think every person there was grateful for the unique experience of Interval. David, the president, said a “few words” in celebration for us and also Paul Allen who formed the company.

We had so many wonderful conversations with friends beyond the picnic.  I won’t name or describe all the people we saw, the joy of being with them, the help they gave us in thinking about our book, or the hospitality they showed us in opening their homes to us.  Just know that we are feeling truly blessed by our continuing community over time and distance. 

By the time we got to CA all my anxieties about the trip had melted.  I dwell on the feeling of those anxieties -- gained and lost -- each day in my prayers.  How fortunate we are to have the money and the time to take a trip like this.  We’d (well, I’D) had considered staying in NC next summer.  NOT anymore.  I’m already beginning to dream about next year’s trip.

The culmination of our time in CA was a stay with my son, his sweetie, and Landen her 6 year old in LA.  Ron rented out his tiny castle in Tapanga Cyn and the three (with Murphy the dog) have moved to a big house 4 blocks from the beach at Playa del Ray.  Ron and Amber took me for a wheel chair walk along the ocean.  Of course the weather there was just perfect.  Oh heaven. 

In this post I’ve mentioned many of joys that have overwhelmed me in our 7 week sojourn; none is quite so satisfying as seeing my son happily in love.  Parents reading this will know exactly what I mean.  I’m not saying that now I can “die happy,” but my feelings are close to that.  I’m feeling blessed to have lived to have a close, loving relationship with my children and to have lived long enough to appreciate the adults they are.  The focus of my life over the expanse of my 66 years has been on my career, not my family.  I’m happy to have the book as a continuing career focus for me now.  Yet my love for my family is the best surprise of my existence.  I realize this is a bit trite.  People confronting death typically put family as their joy and priority.  I know why.

After a leisurely time at Zion, we are off for a drive by of Bryce Canyon, then back to Crestone.  Larry won’t be there this time, but Daniel has some business in town with people he met there (Daniel makes friends wherever he goes.)  On Sunday we travel east on i70 to see Jay, my precious stem cell donor and his family (now our family).

I’ll soon be posting an album of our trip pictures.  Remember that I take pictures to remember where I was; they will not be beautiful photography though our sites and friends have been just that.

Enjoying the view from our patio.

Love to you all,
Bonnie for BanD

Footloose; Our iPhone4 Adventure

Written before July 1, but not posted until July 28!!

You can now reach me again at my cell phone number: 650-324-3816.  I have Zac’s cell phone until I get mine replaced with the new iPhone4.  We are working on that as you will see in the stories I tell here.

We are embarked on our 2010 Western Sojourn.  Our departure from NC was a particularly good one. We were out of the house and on the road before 11 am last Saturday (June 19th); that is a record early time for us.  Of course, we expected to be packed and out of there in time to see Zac play ball in Raleigh at 11am.  We didn’t make it in time to see him play ball at all, but we made it to the pool at the hotel where the Pollards were staying. I got Zac’s cell phone (which he uses as an iPod without phone connection). Daniel and I were having so much fun with the Pollards, we decided to stay the night there too.  I got in lots of pool time with Abi and Luc.  I will MISS THEM, but the memories of our Raleigh time together will help.

We took two days to go from Raleigh to Mom’s place in the northern Chicago suburbs (Glenview).  On the morning of June 24th, we were off in the early am to the Apple store, mostly confident at the time of our departure that we would get new phones.  Here is what I wrote waiting in line (sitting in my wheelchair, drinking coffee):

“6am. We are in line in the hope of scoring a new Apple iPhone4.  I figured the line would be long.  It is FAR longer than either of us imagined.  We should have been here at 5am  (or maybe 3am??); I'm sure there were people here since midnight, maybe earlier.    Still I don't think there are more than a thousand people, and I expect they have at least a thousand phones.  There are reporters here to cover the story of Apple-Madness, of course.   (Daniel was skeptical when I said there would be 100 people;  truly, I didn't believe there would be as many as 200. 1000 folks of all descriptions, but mostly guys under 40, are in two lines that wrap around the corner.  People (mostly women) are still arriving.  (Two guys said they have been here since 8 last night.)

6:45 (store to open at 7).  I was wrong about 5am being early enough.  The 250 people who got uncommitted phones were here before midnight.  Most people in line already had reserved online; we later read in the paper that those people were there all day just to pick up phones they had ordered and paid for! 

Monday, June 28.  We are driving to Denver where we will spend the night and go to an AT&T store tomorrow morning.  We haven’t settled yet on how early that will be.  We may even do a “sleeps in car” trick, lining up tonight and taking turns waiting in line and sleeping in the car.  How crazy are we!  Actually we aren’t as crazy as one might think.  Apple is only delivering phones to a person’s billing address, and it is a long time until we are living at our billing address again. 

We had a good visit with Mom.  She is happy in the Classic Hyatt where she lives.  She has a tall and handsome boyfriend, a retired Army general, who spends every day with her. 

Report about the ATT store early morning visit:  I work up at 1 am on Tuesday morn and couldn't get back to sleep.  I told Daniel I was going to the ATT store to wait (we'd scoped it out on Monday night).  Ever the go-along Daniel agreed to go with me.   We'd return later, hopefully phones in hand, to check out and move along to Crestone, CO, our next stop.

No one was in line when we arrived at the little neighborhood ATT store at 2am.  When they saw us setting up with wheel and picnic chairs, a "friends & family group" of 5, who'd been there before midnight, got out of their car and joined us.  Soon the line was extending.  We were first in line.  The internet connection was great; we happily sat and surfed for five hours.  A bagel/latte place opened at 6.  We had a rousing good time with the Latino "family" next to us all that early morn.  How often do we gringos get an opportunity like that?

    Bonnie & Daniel in line at ATT

We let the family go first, but we took the second service person and had our phones first; I got a tee shirt for my efforts.  We had our phones by 7:15 and thought all was well.  It wasn't.  ATT turned off our old phones immediately.  We were eager to get on to Larry's at Crestone, so we packed and left when our new phones were not yet connected.  There's no ATT service at Crestone or on the mountain road we took to get there.  And so, for one week, with two new phones, Zac's phone, Daniel's "old" 3G, and having spent the bucks on the new phones, we had NO SERVICE.   We learned that we CAN live without cell phone service; but who would want to???

At Larry's Daniel did the sync on our new phones.  By the time we reached Vail on our way to Utah (July 5) our phones got connected automatically.  

Daniel and I are doing some pretty good work on the book as we drive along.  This is a good time for concentrating.  I can see my laptop screen pretty well during the day.  Ah, if I only had an internet connection (If I really need to find something online, I use my cell phone: yeah iPhone data connectivity at a flat rate.)

As you might surmise, life is returning to “normal” for us.  It’s been so long since we had more than a few weeks of normal, I can’t claim to know what that is really.  The most I can say is that I am finding myself occupied by “concerns of the living” such as iPhones and the price of XOM stock. 

We are set and happy to be so.

Happy celling and surfing to you all,

Bonnie for BanD

Where did the month go? Oh that's right . . . it is move out time!

I was shocked to see that neither Daniel or I had posted since May 9.  We have been busy doing all those things we do to "improve" the house for summer rentals.  We've filled a 12' POD with our personal stuff.  We have simplified our summer move out; still it is a big job.

We leave tomorrow morning to get to Raleigh where Zac is playing on his Wilmington All Star Team at 10:30.  Then it is on the Apple store.  I dropped my iPhone in a glass of iced apple juice and then did sometime really stupid... I tried to turn it on.  Daniel says it might have been saved if I hadn't put an electrical charge in it.  Zac is lending me the one he has been using as an iPod Touch until I can get a iPhone4. 

Until I post that I have a working phone, please reach me by email or on Daniel's cell (650-248-9299).

We hope to be in Chicago by Sunday night.  We'll stay a week then go to see Larry and Vicky in Colorado on our way to Northern California.  We expect to be there by July 8th. 

We are looking forward to all our trip... family, friends, the Interval picnic.  See you all SOON.

Bonnie for BanD

After Easter: Storm and Sunshine

It’s been SO long since I last posted on Ash Wednesday, the beginning of Lent.  Easter has come and will go (for us Episcopalians who celebrate Easter for 7 weeks) this coming Sunday, the last day of our Easter season.  I’ve started keeping a daily journal in a program called Optimism where I also record all kinds of numerical data.  I have been reluctant to journal for several years because of a concern that if I were journaling, somehow I would lose motivation for blogging.  Indeed it happened.  I am now resolving NOT to let my daily journaling take away my motivation for blogging.  We’ll see.

My time since Ash Wednesday has been mostly magical.  These pictures taken off our back porch a week ago is a good metaphor of my time.  That was a complete arc of a rainbow, so amazingly beautiful.  Complete arcs are rare. 

 

Sunset on the Rainbow day:

Rainbows come from storm and sun living together in the sky.  That is my life.  Daniel has written of my new problems with weakness.  I’ve now seen three specialists (ENT, sports medicine, neurologist) in addition to the hematologist who serves as my primary care physician.  Their answer is all the same:  my weakens is the result of the prednizone and there is no alternative for my graft-vs-host condition.  When that goes away (sometime in the next 18 months), I won’t need pred and I’ll be better.   I’ve come to accept that I will have storm as well as sun in my life.  I pray that Daniel will also learn not to be so disturbed during my stormy times.  I tend to forget that during the worst of my health events, I was unconscious and so remember nothing, while Daniel was there for every bad moment and every dire prognosis.  He lives in fear that it will happen again while I live oblivious to the very real possibility.

At the beginning of this year, when I was on higher doses of pred, I was actually quite energetic.  All through Lent I was the energizer bunny:  up from 5 or 6 am until midnight and LOVING IT.   After a few weeks of 5 to 6 hours of sleep, I began to think I SHOULD be getting more sleep.  I did have great fatigue in the last hour before I went to bed, but I loved getting up and working on the book the next morning.  Then one day, pow, I felt like sleeping ALL the time.  I began to sleep a lot; I still do.  Yesterday, Saturday, I got up at 9:30 (after 12 hours of sleep) and went back to bed for a nap from 1 to 5.  And I was back asleep from 9:30 last night to 6:30 this morning.  I decided I really wanted to go to the 8am church service and so I pulled myself out of bed.  I fell again, but was able to get myself off the floor (I needed Daniel’s help after my other falls), and I was off to church, arriving during the reading of Psalms.  At 1pm, I’m still energetic.

Lent was so wonderful for me.  I committed to going to our Lenten service every Wednesday and I did.  I made food for the church (the first time I’ve ever done that except of course for pot luck dinners).  My corn/chicken chowder was a big hit at the soup dinner that follows the Lent service.  I had a nightly practice of reading Compline (last litany of the day for monks) and doing Ignatius’ Examen.  It was a fine nightly ritual that I still follow (mostly).  I got my life well organized during Lent, starting to use OmniFOCUS to organize and track all my tasks.  I’ve fallen off some of that since Easter too.  Amazing how little time one has when you sleep 12 hours instead of 6 each day! So, now I’m looking forward to sleeping EIGHT hours a day and having time for my prayers & meditations, my keep-organized rituals, my personal readings, and time with Daniel.

I have continued to do a lot of gardening and cooking.  I went to a plant sale just before Easter and bought TOO MANY herb plants.  They look so small when you buy them.  I photographed each plant and its description as shown in the picture above), and I'm in the process of building a database.  My plants, both from the sale and from the store, took over the screened porch in the back. They were also not thriving there.  Daniel insisted that he wanted his porch back.  And I figured out that they would do better on the front porch.  They definitely are thriving now.  Friday we had a faucet and hose put on the deck so I can water more easily (before that Daniel was filling gallon milk jars with water for me).  I am set now, and loving it.  I use herbs every night in my cooking.

Easter was a grand time for us.  Jennifer and family spent the night with us on Saturday and went to church with me on Easter morning.  Then we were all off to Scott’s parents for the kids annual Easter egg hunt and lunch.  It is so good to live near family. 

On August 8, Ron and his family, and Scott’s sister’s family will all be here.  All the Pollard children will be Baptized at my church and then we’ll have a week here at the beach together.  I’m looking forward to another time as special as Christmas was.  I never expected that at this time in my life, I’d have family so close, emotionally as well as physically.  Daniel and I count our family time as one of the best blessings we have.

Those are not my feet you see in the picture with Luc above.  Those feet have TOES!  I'm doing pretty well with toe-less feet,  however.  I've been dreaming of shoes that would actually fit the size of my 6" feet, but could not find anyplace to buy or make them.  Daniel remembered a custom shoe maker he met at a Renaissance fair FORTY years ago.  He spent a night searching the internet and came up with Sodhoppers, the company who custom makes soft boots.  I contacted them and Paul who now owns the business made me these fine boots.  I loved them so much, I immediately had to have another pair!  

The spiritual retreat I led in April was truly miraculous.  I am looking forward to leading many, many more retreats. 

Sue, Susan, Mary & Susan, my dearest friends from seminary, will be here on Saturday.  The five rockers on the back porch are ready to be well occupied for four days!!

Love to you all,
Bonnie for BanD

Rising and Falling

Living at the ocean one would expect that we are aligned with the endless rhythm of waves rising and falling; sunshine and violent storms.  But no.  Somewhere in my Buddhist training I did not get unhooked from a life where suffering comes in the bundle.  

Bonnie's visits to her doctors and her antibiotics have borne fruit.  Her skin  has more color and she has more reserves, which she liberally runs down to empty every day with her writing, cooking, church going, and preparations for a retreat she is leading this weekend. 

We both went to an appointment with a nutritionist on Monday and were feeling good that we have the beginnings of dietary and exercise plans. 

Then Bonnie fell in her office, hitting the hardwood floors.  She cleverly curled her body to protect her head from hitting the cherry murphy bed she was hurtling toward.  I was awakened by the crash and thud that I could hear and feel.  I raced to help Bonnie and calmly helped her assess her body, clean up the tea and papers.  I helped her to her feet when she was good and ready to get up. 

I have a strange reactions to emergencies.  When a real crash occurs, I get very calm.  I work in slow motion.  I get quiet and do only what is necessary.  On the other hand, when clouds of danger are forming, when conditions are worsening, I get anxious and active.  I am as vocal and pushy as I need to be to get people around the danger to attend and attempt to change the course of what is unfolding. 

I realize by the fact that I was very calm for hours that a real crash had occurred.  I had Bonnie come to rest in bed, where she drank a cup of rum over crushed ice, her favorite remedy.  Bonnie loved relaxing and feeling my hand on her head.  Sweet. 

Bonnie dodged a head injury.  I have not yet seen the bruises on her legs and hip.  I do not know what changes we need to make to her office to make it safer. 

A day later, Bonnie is out on the porch repotting her vegetables and flowers and enjoying a 180 degree view of the ocean.  She is as happy as she has ever been.  I wish I could find peace in the present as Bonnie seems to have found. 

/Daniel for BanD

Long Road

I have not posted here for a couple of months.  I am finding "recovery" a long road, indeed. 

These months we have been up and down and challenged.  

I / we are Up when we see the Grandkids and enjoy the beach and can focus on researching and writing our book.  I loved seeing my grandson Jackson and daughter Debrah on my quick trip to Boston last month.

I / we are Down when Bonnie's health slides and Bonnie falls down and hurts herself.  

Bonnie has been spending more time in her wheelchair after she threw out her back out a couple or three times.  The amounts of Prednisone she has been taking for years to ward off Graft vs. Host Disease in her mouth and eyes etc., coupled with any reduction in her exercise, caused her to lose strength in her legs. 

Bonnie's ability to balance on her tiny feet is compromised and having a lack of strength causes her to fall with increasing frequency.  I was here for a fall to the hardwood floors in living room, which shocked grandkids, as an ice cream bowl crashed and Bonnie was not able to get up.  I helped Bonnie up from a fall down a curb, and had to help her from a nasty fall in our bathtub.  This fall left Bonnie with more big bruises.  Who knows what other falls I do not know about?  Bonnie is determined, proud and Lone Star state independent.  

Both Bonnie and I go Down when Bonnie has more than one infection.  Infections with a compromised immune system are a dangerous, as this is the most common way such folks die.  Bonnie is rarely infection free, so this is an everyday danger.  Bonnie seems to cope with this state of affairs. 

But the everyday-ness of Bonnie's infections does NOT allow my nervous system to relax.  20 months ago, Bonnie knew she had 2 infections, but did not call the doctors for treatment.  Instead she went to work on the Obama election campaign.  The next day, she fell and cracked her head and in the trauma her heart stopped.  We were suddenly veering precipitously close to  death. 

When Bonnie's health dwindles, no amount of psychiatry, or mental exercises reduces my growing sense of vigilance and need to take corrective action.   On the other hand, we have agreed that I will allow Bonnie to manage her own health, now that she can. 

The tension arises when my "caregiver" role gets called upon with increasing frequency, and I see Bonnie having more and more difficulty with the simple things in everyday living.  I suffer as I watch her struggle and plead with Bonnie to see her doctors when she first gets sick.

In the last few weeks, it has not been as easy as usual for me to do the lifting and carrying around here.  My chronic low back condition went acute a couple of months ago.  My chiropractor and physical therapist have been treating my back spasms and a misaligned right hip joint for weeks.  Each condition seems to compound the other.

I am not to sit for more than 30 minutes.  Driving in the car hurts.  I am supposed to have ice packs on my back for as much of the day as I can manage.  After weeks of physical therapy and adjustments my hip is now working such that I can walk without a limp or significant pain.   My muscle spasms have mostly subsided.  Ice has become my best friend. 

Monday Bonnie finally went to see her local oncologist / hematologist after 3 or 4 weeks of dwindling health.  He mentioned that he was surprised to see the decline in her health.

Bonnie had a 1.5 pages of symptoms and health issues to review with him.  She left with new prescriptions for a bladder infection she has had for 3 or 4 weeks and the names of 3 or 4 doctors she is to see ASAP. 

In the meantime,

Spring has sprung and the beach is beautiful.  Life is good. 

/Daniel for BanD

Winds of the World

Daniel and I are so happy as parishioners at St. Philips in Southport.  It is exactly my church.  A good congregation is a mix of wonderful people, from all walks of life and political inclinations.  One of the benefits of belonging to a church is that it is one place where you can really get to know people you otherwise would not.  Fr. Barry is a great flock leader and a person from whom I'm learning a lot.  Daniel commented one day on our way home from services that he feels even more at home at St Philips that he did in our beloved California congregation. 

Each week I make new friends there.  I know now that I am building some really good friendships.  After our friends in Palo Alto, then in Cambridge, foolish me thought: well I’ve had my friends; I’ll make friends, but at my age, I can’t expect to have “really good friendships” starting in my life again.  I was totally wrong about that.

One of my new friends is Martha Myers.  After the session when I talked about Isaiah 58 (see handout in previous posting), I got an email from her with this poem that speaks right to my heart.  I’m sharing with you here with her permission.

In her email she wrote, “Having some "extra" time this afternoon between appointments, I chose to sit (in my car) at the Waterfront Park, and use the time for quiet reflection and meditation. Not having any other reading material with me, I started reading what you gave us today.. Attached is what resulted.”

THE WINDS OF THE WORLD

Scriptural Reference: Isaiah 58:11

The Lord will guide you continually and satisfy your needs in parched places, and make your bones strong and you shall be like a watered garden, like a spring of water, whose waters never fail.

Life has tossed you about on the open sea,
Out where the winds of the world are howling all around.
Blown side to side, then forward and back,
Where will they take you, those winds of the world?

Will you find your way to safety?
Will you make it to the calm?
Bouncing randomly along those waters,
Bouncing with the winds of the world.

The answer, you know, is out there in those howling winds.
Out there in the form of a safety net,
Free from the rough, wild, and random kind of bouncing.
Safety for you from the winds of the world.

The winds will calm just briefly,
And you will think you have found the answer.
You think you have done it on your own, like so many times before.
Only to fooled again, by the winds of the world.

Before long, the calm comes to an end,
Only to have the howling and bouncing begin again.
That bouncing makes you tougher, your mind, your bones, your all.
But still you bounce, in the winds of the world.

Tossed about on that open sea, in all that water
You still thirst for that elusive drink.
That drink that when found will quench your thirst.
That drink that will at last, calm the winds of the world.

And then one day you find it, while tossing to and fro,
That never-ending source of calm water,
Where the winds of the world howl no more.
That place where, the peace of the Lord will guide you on.

©  Martha Myers

February 10, 2010 Southport NC

Remember that You are Dust

Here a .pdf of yesterday's Ash Wednesday sermon. Download BJ Return Sermon v5

Daniel’s post, [Feb 18th, below] written in the beautiful way that only Daniel can, says so much of what my experience of Ash Wednesday was.  I might have said Ash Wednesday is special to me.  Daniel gets it right:  “Ash Wednesday is a space on the calendar she has held with deep regard for many years.”  I am attaching the sermon and some other stuff I’ve done recently at St. Philips later in this post. 

I had asked Fr Barry if I could do a sermon during Advent; you know that I LOVE the Advent Season like no other.  That didn’t work out, but he asked if I would like to speak at the Ash Wednesday services at 7am and 6pm.  I supposed he might have thought that I would have something appropriate to say given my eight years of wrestling with the Angel Death.   Indeed.  I had too much to say in one sermon.  For me the sermon became my opportunity to say ALL I’d learned about Ash Wednesday, death, life, and GOD.  In addition, I wanted to tell about what I have learned about the practice of Lent at EDS and with my Jesuit Spiritual Mentor, the other Fr. Barry in my life, William Barry, S.J.   Well then too, I wanted to encourage parishioners to come to the Maundy Thursday service just before Easter.  The Thursday service is not well attended at St. Philips. We have a huge Wednesday night service -- a wondrous, dramatic Tenebrae service of reading and music.

With all this, my sermon went over twenty minutes.  That is generally a no-no in the Episcopal Church.  Fr. Barry was kind about it.  And I have to say that every person in the room seemed to be with me each moment.  I could feel that my messages were going from my heart to theirs and back to me.  It was the first time I had preached to the whole congregation and people were moved.  So for this time, I felt that my overstepping time boundaries was a good thing but not something to be repeated.

I have already written here about my history with Ash Wednesday.  It started for me in 1999 when Daniel was doing full time hospice with Mom in Houston and I flew there each Friday evening, returning to work on Tuesday morning.   The Palm leaves from Easter of the previous year are burned to create this year’s ash.  My sister had died on or about the previous Palm Sunday.  Facing the imminent death of Mom (3 days after that Ash Wednesday) the world took on a certain coherence of spirit for me for me the Ash Wednesday of 1999.  I call 1999 my year of 4 funerals and a wedding (Jennifer's).  

(I wrote about my history of Ash Wednesday and how it became special to me.  That posting can be found at this link:   If you link there, you’ll get the March posts, beginning with the 31st and you’ll need to scroll down to March 1.)

I hope that you find the sermon meaningful to read as I found it meaningful to write and deliver. That’s the way it is for me these days. I think some of this cosmic stuff in everyday life is hitting Daniel too.  I'll let him speak for himself, though.

Thanks for hanging out here and listening.

Love to you and the best of Lenten seasons for those who are into it; I’m wishing everyone a fine early spring of pondering their cosmic life and world.

Bonnie for BanD

POST SCRIPT  (Yes, I’m really into “one more thing” these days.)

Here are a couple of pdf attachments from my teaching Isaiah 58 in the Bible class on Feb 10.

A textual analysis of Isaiah 58: Download BJ Handout Isaiah 58 commentary.  It uses color type to show the parallel structures in Third Isaiah’s poetry.  You’ll probably find you have to look at it a while and find the matching colors to get the point.  The goal of that analysis is to help you build a better appreciate of Hebrew poetry as well as to encounter the message of Isaiah 58 for Lent -- God: “this is the fast I chose.”  One of the members of the class wrote a wonderful poem in response to the class.  I'll be posting that poem and talking about teaching this weekend.

Here is also a handout about the "liturgical calendar" and celebrating textweek.com as a resource.  Download Lectionary textweek 

Textweek.com is great to research background for a sermon.  I particularly like the links to the writings of John Wesley.   It is also a easy way to find out what readings are coming up.    We are reading Revelations in our Bible Class.  I include in the attachment a sample page from textweek.com that shows how to find whether a particular Biblical passage is read on Sundays.  People interested in Bible Reading may find textweek.com useful.

Ashes, Passion for Sharing Grace (and the effects of high dose Prednisone)

Bonnie spoke from the front of the church tonight.  Ash Wednesday is a space on the calendar she has held with deep regard for many years.  Bonnie has been thinking about being human, and being ashes since her sister died a decade ago.  Statistically speaking, Bonnie has only had about one year to live, for the last 7 years.   She split her time between hospitals and classes in divinity school.  Talk about using ontological design to prepare to speak about being and ashes!

Since the New Year I have watched Bonnie think, write, meditate and sleep on how she can share with her fellow congregants what she has learning about Being and Ashes. 

It was a strange experience having Bonnie act as my minister and telling a church full of people about what she has learned being in rooms we shared.   Bonnie attend a different concert than the one I heard.  But I have always been in a different role / listening than the ones into which Bonnie has been cast. 

For twenty three years I have watched Bonnie as a rhetorician and public speaker.  Bonnie says that a rhetorician adjusts ideas to people, and people to ideas.

Tonight I saw the ideas of Being and Ashes have altered Bonnie; both as a being and as a speaker. 

Bonnie spoke with passion and a sort of zeal I have rarely seen in her.  While the logic of her talk was well laid out, her passion and manner of speaking had an urgency, even a sense of breathlessness I do not recall in her previous talks.  Even speaking from the pulpit in the chapel at the Episcopal Divinity School, knowing that she was likely to be dead by the end of the school year, she was more measured. 

Tonight, it was as if she was having difficulty keeping her balance as she moved through the landscape of her talk.  

In the last weeks of jazz pianist Bill Evan's life, he played with a particular intensity, like a light bulb that has been hit, and suddenly burns brighter before going out.  

I do not know if the high doses of Prednisone Bonnie has been taking to keep her donor's immune system in check contributed to the intensity with which she spoke.  Or is it some sense of urgency to share a sense of Grace that is available for the grasping?

Whatever the alchemy, it seems that Bonnie and the spirit that moved her to speak found their audience in the church. 

Who knows who you marry, when you say "I do".   Indeed, who really knows who we are and what illuminates us?

Daniel for BanD

Teaching, Preaching, and Praying

Daniel and I continue to relish our life these days and to be deeply appreciative for all we have and what we have learned.  Living ocean front brings its own joys each day.  Early in the week the Atlantic was as stormy as I’ve seen it (none of that D.C. snow stuff here.) Most days it is sunny and sometimes in the 60’s.   Today is gray, but still awesome.  They say we’ll have snow overnight.  We love being close to the grandchildren, though it makes us miss Jackson in Cambridge even more sometime.

Tomorrow we are off to the Pollards for Valentine’s Day with all the grandparents.  It is Zac’s last basketball game.  In a month he starts baseball again and Luc returns to spring soccer.  Much kiddo watching ahead for spring.  Today I was making brownies and sausage Valentines (yes Valentines ... sausage with a bit of egg baked in heart shaped muffin “tin” -- actually a heavy iron skillet of a thing I bought in Pennsylvania -- you know how the PA Dutch love those hearts.  Beanie has kept it for me for forty years and now that she is moving out of her house, it came to rest in mine.)  Lucas in particular loves sausage and “pigs in a blanket”; tomorrow he’ll have sausage valentines in those pancakes.  Ah, GrandBe.

Daniel is doing well.  He has been upgrading us to Snow Leopard and moving all my PC files from my old laptop to my shiny MacPro.  He is sleeping well and walking every day on the beach.  Tonight we are heading out to celebrate his 62nd birthday (last Wednesday) at our favorite French restaurant (yes, Oak Island has a FRENCH restaurant; the same place where we went for my birthday).  We gave each other our gas stove for Christmas and birthdays.

For celebrating his birthday all year,  I am committed to his having healthier foods.  Oprah has done shows where 40 year old women committed to sex everyday for their husband’s 40th.  I do remember being 40!  Ah. Now that we are in our 60’s, I guess oatmeal is more realistic??!!   I make sure to have oatmeal bars to snack on all the time.  Today's were made with bananas, blueberries, and cranberries.  yummy.  Last night I made a fine kale dish  combining recipes from Bobby Flay and Mark Bittman to make “Tuscan Kale.”  uhmmm.  Daniel is also cooking.  He has taken his BBQ pulled pork to new heights.  We are taking the last of it to Jen’s for the pre-game Valentine feast.  More cooking for him next week.

I’m continuing my book research reading memoirs of survivors.  I read through each book, scanning content I might use or quote, OCR’ing it and moving it into Evernote with lots of “tags.”  Daniel has me well set up and I find the technology so transparent, I can concentrate on thought.  I’m learning at many levels.  I’ve been concerned about writing for people with “chronic illness” when I know so little of other diseases.  Yes, I have had kidney failure and dialysis; yes I have taken insulin injections multiple times for high sugar in my blood,  but what is the experience of chronic diabetes?  I’m peeking into others’ experiences.

Mostly my past week has revolved around my mission at St. Philips.  I taught the Bible Class on Isaiah 58 on Wednesday.  I have good handouts I will be posting when I have made a bit of revision given what I learned about how “self explanatory” they are.  Look for that by Monday.

I’ve finished the written draft of my Ash Wed sermon (for services at 7am and 6pm on Wed the 17th).  I’m just about able to speak the whole thing without notes.  I will be posting that on Ash Wed, probably in the afternoon if I don’t crash in a nap before the evening service.  We shall see what my energy level is.  The day I taught the Bible Class, I was hyper-hyper.  Little sleep the night before and no nap afterward.  I learned a long time ago to work up my energy levels for special presentations like that; it is a habit now I don’t even realize I’m doing.  Almost like the effects of hypnosis.  I expect some of tha thigh energy will happen all day on the 17th.

The weekend of April 17th I’m leading a weekend retreat for my new religious order, the Daughters of the King.  There will be about a dozen daughters attending at our diocese ocean front conference center.  I am looking forward to that.

I feel gratified especially to have these three experiences in succession:  teaching, preaching, and praying.  These are the gifts I feel God has given me for the good of the Church.  This time last year I was unable to leave the house to attend Sunday Eucharist.  (The joy of that was in meeting the wonderful people who brought Eucharist to me on Sunday.)  Now I am being asked to contribute and in all the ways I have the talents to do.  SUCH JOY I CANNOT REALLY DESCRIBE.  Maybe more than ocean, grandchildren, Daniel, or book, right now I’m finding joy in the prospect and doing of this.  What a lucky person I am!

I am so fortunate because I have good friends like you.  In reading the blog for the book, I noticed people I hadn’t talked to since Cambridge.  Donna was a key person there.  Then lo and behold, Donna leaves another post.  Thank you Donna.  THANK YOU EVERYBODY!

I’ve been wanting to get onto Facebook to check out Betsy’s postings.  I’ve tried a couple of times, but hadn’t been able to get an account successfully (long story).  Today I tried again.  WOW; it worked immediately and flawlesly.  Facebook looked at my address book and sent messages to many, many people asking them to confirm their “friendship” with me.  Within 20 minutes I was confirmed by almost 50 people.  I was astounded.  I’ve had some messages from people I haven’t heard from in SO long.  I hear I also have postings on my “wall”; I’ll have to figure out what that it.  Welcome to the online world of social networking, Bonnie!  I think I have hesitated about social networking sites, not wanting Facebook to substitute for more thoughtful blog postings.  I do like the connection to more people and think my membership will be good for me.  What is your experience with social networking?

Look for more postings in the next week.  I seem to be in a creative/expansive mood now (more about my “mood adventures” too.

THANK YOU for hanging with us.  You mean so much to us.

Bonnie for BanD

Note upon returning from birthday dinner.  Oh my, food so good.  And when we left is was indeed snowing, large wet flakes.  Daniel was thoughtful enough to cover my stair lift chair when we left.  Thank you, Daniel.  The snow won’t stick, but it was beautiful to see tonight.  It’s my first snow at the beach.

I guess that's why they call it CHRONIC Illness...

We have had an amazingly good time with family and friends over the last several months.  We are both uncoiling.  It is as if we have beaten like tetherballs, dizzyingly tight up against the poles of our lives and now we are unwinding.

This year I did a David Allen year-end exercise, recalling what I had done this year.  Question: What has actually been completed?  We have been so wrapped up in staying alive and keeping the houses intact, I felt we had completed nothing.   As I began our review, I noticed that the calendar year of 2009 was a completely arbitrary unit of time;  It was more instructive to review my sense of time - from the beginning of our exodus from divinity school Cambridge until we settled into this house.  So my "year" ran from July 2008 - until the last days of 2009.  We had been feeling like displaced persons for 18 months.  When Bonnie could work in her study and cook; when I could really hear into my music, we were back home.

I was surprised to see how many things we had actually completed in the domains of health, family, house projects, finance,  and spirit during our 18 month exodus.  (As much as anything is ever completed in life.)  Most significantly Bonnie had been fully re-born, again.  I had actually graduated from being a full-time care giver, to a normal spouse.  (Well, as normal as I get.) 

As we re-engage in living, we are unwinding years of samsara.  I find my self "awakening" to our environment and my Self, my health etc.  At times sunlight bursts through the clouds and literally makes me look up and see the ocean.  Other times I actually SEE our warm, little home.  I am sure the Sun has been bursting through clouds over the last 18 months.  But I barely noticed.  I was literally asleep or I was head down, focusing on what we are doing or facing. 

And then there is waking up to see Bonnie - in a different body altogether.   She is a more mature and wise spirit in the world.   Yet she has a child's sense of play at times, singing to herself.  Other times one can see the effects of the Predisone on her body and on her disposition. 

Bonnie remains a remarkable spirit and woman, even as she lives in the midst of a life that takes of hours of real effort, every morning and night, simply to retain her ability to SEE, walk, hear and keep her mouth and eyes intact. 

While Bonnie was getting her study / home office back in some semblance of order for the first time since divinity school and while we were in the midst of 20 days of Christmas, while I was getting the music system back into the "goosebump zone", Bonnie's mouth developed sores that indicate an outbreak of Chronic Graft vs. Host Disease. 

So we are off to the Duke Bone Marrow Clinic tomorrow - a 7 hour round trip - to see if we can ward off this chronic disease from spreading into Bonnie's eyes, skin, stomach and liver.  

I guess that is why they call what Bonnie has endured for 7.5 years = CHRONIC illnesses. 

Curiously, neither of us are panicked or even particularly stressed out by this latest outbreak of CGvHD.  By now this is a normal state of affairs. 

Grey storm clouds swirl and blow for days over the ocean.  This is part of our everyday reality.  Surely the sun will burst through and shine in our back door one day.  We pray for another few years of living, even if with Chronic Illnesses. 

And until we are swept away by the ocean of life, what an amazing life we are living. 

Thank you for being such a vital part of our life-scape.

/Daniel for BanD

 

Birthday 2010

The best of times, the worst of times... well, almost.

What a difference a year makes.  Last year my birthday was such a celebration.  I was absorbed all day in the big party in Washington.  I felt deeply happy that the country had finally been rescued from the forces of the dark side.  At last, reason was taking over the direction of the country.  I wouldn't let myself hear about the news from the Massachusetts election until late last night, and I told Daniel I DID NOT want to talk about it.  I just wanted to be silent in my misery.  I feel so displaced; I can imagine that many of you do too.  I guess it gives me more empathy for conservatives who felt displaced by the 2008 election.  I'm not sure I want to feel any sympathy for them though.   I'll get over it; you will too.  I know there are "lessons to learn" and that this is a lesson in not taking anything for granted in politics, blah, blah blah.  I'm not going to think anymore about it right now.

Daniel and I are planning to go out to our favorite restaurant tonight (assuming they are open on Wed nights in the winter; this is summer vacation land and many places are open only on weekends if at all).  It amazing that little Oak Island can have such a great French restaurant.  I'll have to eat soft, mild food since my mouth is again quite sore with what I think must be graph-vs-host disease.  Oh well.

I am feeling grateful.  I'm still basking in the holiday spirit.  We are loving our view of the ocean.  Ducky asked where we are that we get an ocean sunset . . . as if only you west-coasters can enjoy such a thing.  Our NC house/beach is south facing.  This means in the winter (only) we get sunrise and sunset over the ocean.  WOW.  Who could not feel grateful to live in such a place?

And I'm grateful for my recovery this year.  Last year I was completely wheelchair bound.  I didn't even yet have "bathroom privileges" -- meaning I was supposed to (and needed to) call for help to go to the bathroom.  BUT I could use the bathroom, unlike a month before when I was bedpan bound.  Thank you God for the luxury of bathroom privileges and skills.

Yesterday I had an amazing spiritual experience.  I am doing the Ash Wednesday sermon at St. Philips.  I've been pondering and pondering what I would say.  I decided to start the draft.  Though I will do the sermon "extemporaneously" I wanted to write it out to share here on the blog and elsewhere.  I felt that I needed to start the draft before I turned my attention to our book writing.  Daniel was in Wilmington and so I sat down about 3 and started drafting.  Three hours later I had a respectable draft of the whole sermon.  I felt as if I were channeling.  The whole thing came gently and surely.  I will be doing much in refining it and turning it into an extemporaneous sermon over the next weeks before the 17th.  Yesterday's experience felt like a birthday gift from God:  "Bonnie, here is what I want you to say in my name." 

My birthday present to myself is a renewed focus on our book.  I haven't written a thing since mid November.  I'm now committed to time in my chair; dare I hope to continue that "channeling" experience?

Thank you for all your birthday greetings. 

Much love to you all,

Bonnie for BanD

Ho, Ho, Ho, and Happy New Year

Yes, Daniel and I have been so involved with life that we have not been blogging.  If our two weeks of Christmas (Sunday before to Sunday, Jan 3) weren’t the very best of our lives, certainly this has been the finest Christmas in our life together.  We are still basking in the joy of it as well as resting and resting from our activities.  I’m sitting in my black chair, turned to face the Christmas tree and be near the ocean facing windows.

We would be grateful for such a fine Christmas even without comparing it to last year.  When I think of last year though I am surprised and especially appreciative.  On December 25, 2008 I was in Duke hospital, ten days post surgery and not at all sure if I’d ever be able to walk again.  Daniel came to be with me in Durham, but I was alone most of the time during my precious Advent and 12 days of Christmas.  I had had a Foley catheter for two months and would not be rid of it for another two weeks.  No one was strong enough to hold me so that I could stand.  My feet were bandaged and I did not yet have any shoes to help me stand even if my legs were strong enough to support me.  I could not sit in a wheel chair more than an hour at a time.  Even though I could celebrate the Incarnation of the Holy Spirit in me, I wasn’t at all sure that life would have much for me in the future.  It has been a hard year for me learning to walk again and getting more sight back than I could have wished for that Christmas, yet the year has been rewarding in so many ways.

For those who are interested, there follws a little blow-by-blow of our fabulous Christmas 2009 season.  I have several pictures that I want to include in the text; I've put an album of most of my photos in an album shown in the right column.  My son Ron has become quite a good photographer and is very involved in his photography lessons and assignments.  We had a well photographed two weeks.

Better than this time last year, not as good as last month

It has been a LONG time since I last posted.  We have had a fine November with our trip to Boston and Chicago.  I complained about the weather being too cold.  Last year I missed winter altogether--I wasn’t outside at all from October to February.  I didn’t have much of a view from any of my hospital windows;  I mostly forgot that it was winter.  Just one year without winter was enough to make me get used to it.  Now that we are back in NC (where is is usually in the 60’s),  I’m happy to be out of the cold.

We had two good visits with our grandson Jackson.  We never get enough of that kiddo.  He is in an early kindergarten in Cambridge and is thriving there. He is tall and smart.  He and his Grandpa Daniel had some serious play time with the Hess race car we got him for an early birthday present. 

We had our usual grand time with Beanie and Rowan; Daniel and Rowan had their romps in the yard.  Rowan is still not great at returning balls Daniel throws her.  We came through State College and saw Margaret and Tom Benson.  Daniel loved hearing stories about Bonnie long before he met me.  From Chicago, we took a side trip to see Margaret and Paul in Madison (great fun); ten days later they had 19” of snow.  Ah, Wisconsin. 

Daniel’s mom Margery is doing well and enjoying her life in the Classic Hyatt where she lives.  We all spent Thanksgiving with a friend of Bev’s and her family; sixteen adults for dinner.  Our niece and nephew cooked an anniversary dinner for us the next night (Bev/Alan’s 31st; our 21st).  After dinner Bev and Daniel started to recite childrens poems of A.A. Milne (before he published Winnie the Pooh). 
Bev then got out the actual books Mom read to them when they were young, and all the Shurmans along with Mom's good friend, General Paul,
started to read.  I have a little video of Mom reading, but it looks like my blog software wants me to post it to a url like UTube first.  Hmmm, I guess I'd better research this a bit more and get permissions before such a public posting.  We did have great fun with those old poems. 

Daniel drove straight home from Chicago; I slept almost the whole 20 hours of the trip.  I was getting a cold.  We were grateful for safe travels all those ways.   The day after we got home we were in an accident.  No one was hurt, though the cars were badly damaged.  The air bag hit me especially hard; I’m still sore.  I sat, somewhat stunned, in the car until the emergency crew arrived.  I didn’t know that I should evacuate because the powder and gas in the air bag are not good for you.  I continue to be amazed at how much we don’t know about how to take care of ourselves.  Have you ever heard to get out of a car as soon as possible if a bag deploys?  I was cold and didn’t even roll down the window, though the gas and powder from the bag were unpleasant.  Daniel was fine and got out immediately to see about the other driver.  I continue to have pains; a jolt to the chest is especially painful when you have a cold and need to cough all the time.

In the third week of Advent we are enjoying this season of hope.  As you may recall, this is the week of birthdays for all three of our children (Ron and Jen today [Dec 16]; Debrah Friday) and also our grandson Jackson (on his Mom’s birthday).  Babies (even when they reach 40) make this season special for us. 

The pains that are slowing me down are also giving me time and space to contemplate the joy of the season.  I love being reminded of JOY even by some quite tacky decorations seen around here.  It is a funny feeling to be so sore and yet so joyful.  When I get a little glum, Daniel reminds me that though I’m not as well as I was last month, I’m a lot better than last year. 

We hope you are having a joyful season of anticipation and hope.

Love to you all, Bonnie for BanD  

Falling in Love again ...

I find myself falling in love again.  Here are my two NC girls asleep in my bed at 3AM last night.  Such sweet warmth and beautiful skin and soft breathing.

As Abi slept she moved her body into the same positions Bonnie cycles through during the night.  It is curious to see Abi following Bonnie, even when she is asleep. 

It feels so good to have them in my bed!!  and re-awakening feelings of love in my heart.  I am almost afraid to relax into the feeling, but there it is.  Having Abi in our bed reminds me of my daughter Debrah sleeping in the bed next to me when she was Abigail's age.

Debrah is all grown up now.  This fall she defended her PhD Thesis in Virology at the Harvard Med School.  She is now Doctor Debrah.

I was showing Abi pictures of our family and explaining that her Mommy was GrandBe's baby.  Abi was wide-eyed.  I showed her pictures of my mother and told her that I was my mommy's baby.  Tonight Abi spoke to my mother on the phone.  Abi told her that she loves her. 

Abi gets that people were little babies and they grow up, since she loves to see pictures of "the baby Abi" and her brothers.  But she can not get her mind around the idea that a giant, like Grandpa was ever a little baby.

Abigail is amazing at living with exuberance for the sheer joy of it.  Yet she lives in a world where most things are mysterious:  She can not fathom things like 4 generations of family and even the dark is scary.  What is more is that Abi can not do even the simplest things for herself, like getting herself a glass of milk or changing her own diapers. 

Imagine what we would be like if we were suddenly so "handicapped", yet she is full of joy.  Children are miracles who produce joy in the midst of a confusing world and parents who care for them are boons to our societies. 

When I was showing Abi pictures, I flipped to a picture of my grandson, Jackson with Debrah.  I fell in love all over again with our whole family, but particularly Debrah and Jackson in that moment.  Abi was the catalyst in  re-awakening those feelings.  Grandkids are wonders.  

My heart tests went well.  Our Grandson Zac got all A's and an A+ on his 3rd Grade report card.  3 days ago Lucas asked me to coach him to better bat a baseball.  What a joy.  Luc has now widened his batting stance (like Alex Rodriguez) and he is keeping his eye on the ball.  Luc now smacks the whiffle ball almost into the ocean when we play on the beach.

And I am returning to life, bit by bit. 

Bonnie is very happy with our arrangement of having one or more grandkids in inventory here every day this week.  But she was running a degree of fever and has some lung issue.  Bonnie breathes hard just cooking and was not able to blow up a balloon.  I think it is the mold in the ducts. 

We are out of here Saturday, to drive to Boston to get her reconstructed eye checked out.  While we are gone the A/C and all of the ducts will be replaced.  Hurray.  One more threat reduced. 

Oh! to be able to stay in the "life-is-good-and-I-am-in-love" zone for a few weeks, dare I wish for a few months? 

I wish you all a season of true thanksgiving.  I give thanks for our family and friends this season. 

/Daniel for BanD

Returning to Life - The new normal.

We are at the beach.  Our 4 year-old Luc and 30 month-old Abi are asleep in the same bed, in their room.  GrandBe tucked them in and read them a story.  They love it here.  Of course, then they needed a glass of water.

Bons is sleeping with a smile on her face.  When she gets up in the middle of the night she looks in on her "kids", who will awaken her at 7AM by putting all four of their hands gently on her face and urging her to get up to play.

The smell of the black cherry wood smoking 2 pork shoulders is in the ocean air.  Lucas put on his special purple and black barbeque gloves and helped me arrange the charcoal and wood chunks in the smoker.  He had to do it just so, to make sure we have a steady temperature of around 212 - 220 F for 12 - 14 hours it takes to turn "Boston Butts" into tender, succulent pulled pork shoulder.  He did a great job.

After he helped me, Luc ran to the top of the dune 3 times to report on the height of the waves and the fishing boats on the horizon.  Abi came out on the screen porch and down to the beach when the hamburgers were ready to come off the grill.  I picked her up and we looked to see how many stars were visible in the early evening sky.  She loves to be up high in my arms and pointing to where the sun went down.  The horizon to the west had turned dark in deep purples with the last traces of red.  Abi went still for a minute looking at the horizon.

Bonnie is mostly out of pain, able to see, read, walk, drive and cook.  She still uses her wheelchair in the house some of the time to take weight off of her sore back.  She plays cars, colors and reads to the grandkids when they are here.  Bonnie fixes breakfast du jour: usually sausage and eggs or deep-dish dutch baby pancakes with jam.  Of course Abi has to help, with her stool parked hard by Bonnie's side at the counter.  Abi participates in every step, and asks"why" when there is some new ingredient or technique.  Bonnie explains in a voice that hums and sings.  Abi nods and the creation of breakfast and closeness moves along.  

When the kids are not here, and Bonnie is not at some doctor's office, or church function, she spends most hours each day writing in her office.  She has finished editing the first draft of the "story" section of our book; "How to Be a Successful Patient: Living!! with Chronic and Fatal Illnesses."  Bonnie's story of zig-zagging along the boundary of life during her prolonged stays at Stanford Hospital, Brigham and Womens Hospital, UNC-Chapel Hill Hospital, New Hanover Regional Medical Center Surgical Trauma Intensive Care Unit, and Duke Hospital and her months of rehabilitations at Youville Hospital, Durham Regional Hospital, and Coastal Rehabilitation Hospital, is currently about 360 pages. 

The second section of the book is on the domains of competence one needs to develop if one is to become a successful patient.  Each of these chapters are well-researched and outlined in detail.  I think it will take a week for each of the nine chapters.  The final section, a workbook of checklists, forms, and links to useful organizations and websites has also been well-researched and is coming along nicely.  We are deeply dyed with a passion to produce a book that is of lasting value to patients, families and friends facing chronic and critical illnesses.

In the meantime, I have been going to doctors to catch up on the "deferred maintenance" on my 61 year-old body.  I have a deep sense of fatigue most days and depression from time to time.  I have had a nuclear heart exam and stress EKG; a complete blood panel including some sophisticated cholesterol testing, and PSA tests and soon a sleep apnea test.  

I told the EKG technician that my wife was worried that she would lose her full-time care giver, and that I had to tell her the results of my test when I went home.  EKG techs are trained to be upbeat, and that ONLY a doctor can say what the squiggles on the roll of graph paper mean.  So she said "You did very well! ... after all we did not put you in an ambulance and send you off to the hospital."  This being the biggest heart testing facility in several counties, I speculate they send "customers" off in an ambulance more than once a week.

Bonnie laughed when I told her my evidence for my heart being fine.  We have lost track of the number of times I have taken her to a clinic for the usual tests or to a doctors appointment only to have the doctor INSIST that Bonnie be admitted to the hospital via the emergency room, which was normally an 8 hour process.

Thank God, our new normal is rebuilding our health, while we play with our grandchildren, write our book and rebuild our beach house.  This beach house was condemned after Hurricane Floyd in 1999.  We bought the house in 2002 and have stripped it to the studs and completely rebuilt it, piece by piece.  Only the pilings have not been replaced.  Our "30 year shingle roof" is 8 years old.  Now the roofing contractor guarantees that it will NOT LAST more than 2 years ... or 1 hurricane.  The shingles are fine, only the nail heads holding the shingles down have rusted off.  Along the ocean, buildings and materials are measured in dog years.

Central A/C units suffer the most from being on the ocean.  Our Central A/C ducts and Air Handlers in the attics were replaced 2 systems ago, and use the now-out-of-date coolant.  The outside Compressors / Heat Pumps are Tranes and only 6 years old.  And while "Nothing Stops a Trane", one of the outdoor compressors died of salt air corrosion that ate through an aluminum block where it hits a copper fitting.  The other unit is going fast.  

When we replace these units, I am having the coils coated with a "marine kit".  And I am installing 8 rainbird irrigation heads that will popup and rinse down the outdoor units everyday at 3 PM.  This should increase efficiency and reduce the salt corrosion.  We aim to get 10 years out of the new A/C units. 

In any case, the entire A/C system on both sides of the house has to be replaced this month, down to the last duct and vent.  I have whiffed traces of mold coming from the air handler and/or ducts.  I had swabs done on both sides which have confirmed my "diagonsis": Black Mold.  Since Bonnie continues to be immune compromised, black mold can create an infection that would spell the end. 

In the meantime, I am trying to find the source of a "small water leak" over the ocean window in our bedroom, that only shows up after gale force ocean storms.  Roof?  Window flashing?  Windows?  I am going to have to try to find the source of the leak using a pressure washer. 

Living on the front row of the Atlantic Ocean is like hanging 5 on a surf board for life:  It is exciting, very taxing and only for people with free attention and resources.  I wonder how long we will be able to keep up with the ocean.

I have another two pages of "To Do's" to get this house right for us and next summer's rental season. 

We have to replace or repair at least 4 pilings on which the house sits.  They are becoming wasp-waisted where they hit the sand.   Then we have to  replace 2.5 feet of sand that a hurricane storm surge washed out from under the house.  A beach house stays in place in direct ratio to the pilings "friction inches" with the sand.  Replacing the 2.5 feet of sand will be a good thing, but requires permits from the City, State and Coastal Area Management Authority.  Pilings and sand can only be replaced during months of the year when the noise will not disturb the nesting sea turtles. 

We have to disconnect the septic system and connect to the new Oak Island sewer system, which may come on line by January 1.  This will allow us to park 2 cars UNDER the house, and give Bonnie a wooden walk way to the stair lift.  She currently has to navigate in sand with her tiny toeless feet, which is a challenge.  I may even get my high end stereo system set up this year.

By the end of May 2010 we should have our book in condition to publish, AND have our once condemned beach house very much a home for us.

Now, IF the 2010 hurricane season leaves the house in place, next winter I am going to see about creating some raised-box landscaping.  Bonnie wants Birds of Paradise and I want Japanese Satsuki Azealas.  We shall see if we can find species that can cope with the temperatures and salt air.

My greatest joy is watching Bonnie play with her grandchildren.  Bonnie lived for these days and these days are here today.

/Daniel for BanD

Well, Well, Well . . . Pain Disappeared

In my last post I speculated that once the anniversary of last fall’s trauma (Oct 19) was behind me, my leg pain might disappear.  It appears that has happened.  On Oct 20, my pain was much less and on the 21 and 22, I had no pain at all.  My back, hip, and leg felt like they did before this pain incident started four weeks ago.  Today (Oct 23) my left leg is a bit more sore and numb feeling today, so we shall see if the pain relief is truly that or just a temporary reprieve.  I’m looking forward to a great 90 minute massage later this morning.  (Update Oct 24: Great massage; I have a little pain, but nothing to write home [blog] about.)

Still, it is curious that my condition changed so quickly, with little explanation except that Luc and Abi were here the 21st and 22nd.  Their visits always help Daniel and I feel better.  We made Halloween cookies using the cookie cutters I bought last year but never used. I have an appointment with a  psychiatric therapist next week to discuss trauma associate behaviors . . . this may be one.  I am determined to do whatever I can to keep my promise have a hospital-free decade.

Mommy took the kiddos to see the 3-D movie “Cloudy with a Chance of Meatballs.” This picture is a bit grainy, shot in low light.  The sight in my left eye is getting so good I hope to see a 3-D movie in the next year.



With 2008 taxes behind me also, I am looking forward to concentrating on our book again.  The chapter in front of me is the one on last falls incident and recovery from that.    of the 600 pages of blog text, 225 were written during this period.   This chapter will be the last of the narrative;  after drafting it, I’m on to a unit of “reflective/instructive” chapters in which we take each of the seven competencies one at a time.

Today I went to my first training session to join the Daughters of the King, an Episcopal prayer society with some national coverage though mostly in the South.  Our rector’s wife is leading the sessions.  She told me that she wanted the session to be in our library to introduce people to the library I put together and got installed in the church before my fall incident.  It was heartwarming to get to talk about it and have people be so enthusiastic.  One new gay member said that when she and her spouse were church shopping it was this library that convinced them St. Philips was a church where they would be welcome.  Wow.  It was so good to hear that.  There were twenty or so books that had been donated over this past year that I will now proceed to catalog the.  And I will finally write the article for the church newsletter officially announcing the library and its background.  

We are looking forward to a good week.  All three kiddos come on Thursday afternoon for 24 hours.  We are loving our beach house.  Even though it is small by American standards, it seems to be a perfect fit for us.  As winter approaches the sky has more clouds and the sunsets are more and more amazing.

Love and peace, Bonnie for BanD

The Fall Incident

Today, October 19th, is the first anniversary of what I've come to call my "fall incident." 

It has been QUITE a year for us.  In many ways it hasn't been my worst year; I still believe the worst year of my life was 1999.  I call that my year of "four funerals and a wedding."  That year my cat, my mother, and Daniel's father died.  I suffered traumas associated with each of these deaths as well as the deaths in 1998 of my sister and best friend.   I personified the closing of a start up company my research company has founded, saying I suffered the death of  "Rocket" a game character my company had created, and with the closing of the girl's game company, Purple Moon, I lost hope in the research company where I worked, and also my career.  I wrote about the personal impact of this loss of hope in the Maundy Thursday post in 2006 (At the time of that post, we were waiting to hear about whether there would be a stem cell donor for me). Maundy Thursday Post '06

2009 has not been as bad for me as 1999 simply because I have changed, and Daniel has changed.  Speaking for me, I have a better since of values.  In 1999, I would fall into deep bad moves if my material situation worsened even slightly.  Over the last ten years, primarily because of my recurring illness, I have learned.  My sense of myself, of Daniel, and of life is deeper and more stable, and more joyful because of that. 

In the 1990’s I would wonder at Jesus’ observation that if God took care of birds, God would take care of us.  Oh, yeah.  I couldn’t imagine how that could be true.  Yet, God has taken care of us.  Even this year when we watched the savings on which we live tumble, I haven’t panicked as I would a decade ago.  I am go grateful that I got to this situation before I died.

The anniversary of events of a year ago are stressful for me, and I think at least as much for Daniel.   I slept twelve hours last night and I’m still sleepy.  This is the kind of drowsiness I typically have before I see the doctor.  So what is the anxiety here?  I don’t know.

My back pains continue, a month now.  I have to think that this anxiety has something to do with that persistent pain.  I’m seeing a chiropractic three times a week and getting a therapeutic massage at least 90 minutes a week.  The pain will go away.  Who knows, once I get through this anniversary, it may be instantly gone tomorrow. 

Love to you all; thank you for your loving support,

Bonnie for BanD

Bonnie and the grandkids here at the Beach.

The house is quiet except for the attic-vent tubine spinning in the wind.  Bonnie is napping with Abigail all curled up in the Master Bedroom.  Lucas is asleep in the kids bedroom.  For 40 minutes I could hear them horsing around when they were supposed to napping in their bedroom.  Instead they were stuffing there favorite cars into GrandBe's colorful clay vase, giggling and padding around their bedroom in their bare little feet.  

I picked Abi up and put her in the other bed with GrandBe.  Neither protested too much.  Ah, silence at last. 

The ocean is white and whipped up with winds going this way and that.  Bonnie was in such pain that she was up at 3:30 AM and calling our wonderful Chiropractor, Joy, at 8 AM.   The kids stayed with me, asking every 20 minutes, "where's GrandBe"?   Abigail successfully used the toilet again and we all cheered.  She used her step stool to wash her hands. 

Then she and GrandBe cooked up pancakes and sausages.  Abigail had to have her step-stool pulled up and standing by the counter to help Bonnie whip up the batter and then taste-test each batch of pancakes as they come out of the pan.  Huge grin, as she would munch on pancake after pancake.  Periodically, Abi sprang off the stool into my arms insisting that she is an "Ahh-plane". 

Bonnie is sleeping on an icepack.  She opened her eyes dreamily when I came in to kiss her.  I flash on years and years of Bonnie opening her eyes to see what the nurses or I am about to do to her when we come in and awaken her.  There is still a tiny bit of apprehension when someone comes up on her.  Bonnie remembers where she is and looks over at her grand daugther asleep in her bed and pulled the comforter up around Abi's shoulders.  Bonnie breathes softly, smiles and drifts back to sleep.  Bonnie is so happy, the house fairly glows with her contentment. 

And at night Bonnie is in such pain she is beside herself.  Ice, lots of Nuprin, even rum over crushed ice does not bring her relief; she tosses and turns and whimpers in pain.  It is painful to be around Bonnie as there is little or nothing I can do.  I put my hand on her chest when she is crying out in her dreams.  When she is awake all I can do is remind her that if she goes and gets her L5 vertebra adjusted every other day and keeps to her icing her back, 20 minutes on and 20 minutes off, she will get relief in a few days or weeks. 

The only thing that seems to bring Bonnie distraction is to play cars with the kids or cooking with Abi, and then reading to the kids and drifting off to sleep.  Both kids had 2 baths today.  They love GrandBe's attention.  The simplest things, like plastic tumblers to fill and then empty in the tub bring them joy.  When they are dried off, they all end up on the couch, coloring and singing.  The three of them seem to be in some shared magical space as they orbit around each other.  Wherever Bonnie goes, she has two planets circling their sun.    

Today, Luc showed Abi how to wrap up her sausage in her pancake to make "pigs in a blanket".   So breakfast was an event, each one wrapping and re-wrapping their link sausage and considering the look and feel and taste of pigs in a blanket.  When play is creative, no one corrects their table manners.  Such is life with GrandBe at the Beeeeach. 

While Bonnie was trying to get them to go down for their nap, I had a contractor over to face the realities of replacing the roof, and central air units.  Each was replaced in 2002 or 2003.  The "30 year shingles" were fine, but the ocean salt air has rusted the heads off of the roofing nails.  On the front row of the ocean we needed "hot zinc, double dipped" nails.  The previous owner must have "economized" on the nails, and to compound the problem, the steel nails were tacked too close to the leading edge of the next shingle, allowing salt water blown under the shingles to attack the nail heads.  Everywhere the head of the nail is rusted off, there is a hole in the roof to leak.  No way to repair it with caulk we are told.  The shingles are fine, it is the nails that have to go. 

Our "10 year Trane" A/C units are fine, ("you can't stop a Trane") but after 6 years the ocean's salt air has corroded the aluminum block where the fittings enter the unit, and oh yeah, the coils on the A/C unit are about shot due to the salt.

I asked how to prevent this from happening next time.  The A/C specialist  said wash the units with a garden hose every time you think of it.  I suggested that we simply install a bunch of Rain Bird lawn spray heads that pop up and thoroughly rinse the A/C units every other day.  The A/C guy said with surprise, that would work very well.  Then he wondered aloud why no one has thought of this remedy before.  If hurricanes or storm surges do not wipe the house off the beach for a decade, we may see how my strategy works. 

In the meantime, we will lift the platform supporting the exterior A/C units up another 4 feet, so it will be 12 feet above the sea level.  We will enclose the A/C  units on all four sides to reduce the amount of salt air that blows through them, and have the Rain Birds wash the units clean every other day. 

So the rough beauty and magic at the beach come at a big expense.  The wind and the salt air keep reminding us that all things are so very impermanent. 

Even the peace and quiet in the house will only last another hour or so.  Then the kids will stand by GrandBe's bed and put gently 4 tiny hands on her face to wake her up.  When she smiles at them, they say  "GrandBe, let's play cars!"   Five minutes later the silence will be rent by squeals of her kiddos running to catch their cars as they karoom along the 8 foot plastic ramp GrandBe rolls out for them. 

/Daniel for BanD by the sea.

Back to the Wheelchair; Pains of the Living

It has been a week now since I started getting a vague pain in my back. Tuesday I picked up Luc and Abi after a five hour infusion in Wilmington.  We had a such a great time with the kiddos, but each day, the pain got worse.  Daniel called our rehab masseuse and arranged an appointment “for him”  on Thursday; I agreed to an appointment on Friday.

By Thursday morning, I could no longer walk without severe pain. Walking made me more sore with the pain spreading from my back down my leg.  I took to my wheelchair in an effort to keep the pain in my left leg from getting worse.  Daniel offered me his massage appointment, and gladly accepted, leaving him to take care of Luc and Abi.  Later, he had to take them back to Wilmington by himself.

I had three hours of massage last week.  I am better than I would have been.  Today, I have been walking, but I am in pain.

Such are the pains of the living.  I have been fortunate to have diseases that are mostly without pain.  Thank God.  Daniel, who is a veteran back pain, assures me “this too will pass.”  And it will.  So many of you have reported in this blog about severe pains you have had, almost apologizing that they didn’t compare to my life threatening problems.  I can tell you, pain is pain.  Pains of the living can be much worse than many of the pains of the dying.

Work on the book goes well.  (My most comfortable position is sitting in my office chair.)

Peace and love, Bonnie for BanD

How many different kinds of people did it take to bring Bonnie back from being blind and dead tired?

I will not be able to capture the range, or the sheer number of people who have helped Bonnie regain her sight over the last 120 days, much less the hundreds who have helped us over the past 7 years, but just thinking of a few of them brings me a sense of relief.  And relief from the ravages of the last 4 years is most welcome.

Bonnie stumbled into Dr. Kelly's Oak Island office on January 3, 2008 suffering with severe pain and dry eye due to her Graft vs. Host disease.  Within 6 days Bonnie's left cornea had perforated.  Dr. Kelly said he had never seen an eye deteriorating so quickly.  He consulted with Dr. Cutler at Dana Farber Cancer Institute, to discuss Bonnie's Severe Graft vs. Host disease.  He offered to take care of Bonnie in Wilmington given that it might be dangerous to fly back to Boston due to Bonnie compromised immune system.  We asked him what he would do if Bonnie were his wife.  He advised us to get on an airplane for Mass Eye and Ear that very day.  We trust Dr. Kelly and we were on the next plane out.

We made it to Mass Eye and Ear emergency room the first thing the next morning and after 3 emergency surgeries Dr. Colby was able to save Bonnie's left eye. 

Dr. Kelly had interned in Boston 30 years ago.  We were lucky to find such a straight shooter.  At Mass Eye and Ear they confirmed that rarely, if ever, does an eye deteriorate as quickly has Bonnie's had. 

16 months later we entrusted Bonnie's only "good eye" to Dr. Kelly.   He was open to consulting on Bonnie's medications and surgical details with Dr. Jacobs, a Graft vs. Host specialist at the Boston Foundation for Sight who also teaches at Harvard Med.   Dr. Kelly removed the dense cataract in Bonnie's right eye and inserted a lens designed to allow Bonnie to read without glasses.  It was amazing to watch Bonnie go from being legally blind to reading without glasses and well enough to pass her drivers license eye test.

In case you have not had to work closely with Doctors much, Dr. Kelly shows an unusual combination of skill and willingness coordinate with other surgeons, compassion for Bonnie's situation and suffering, a good sense of humor and patience to help us stay the course.  And then there is Mary, his office manager, who reads Bonnie's weblog and prays for Bonnie.  Mary saw to it that Bonnie had a pot of live flowers from Dr. Kelly when she came for her post-surgical check up.  Here we have found North Carolina small-town familiarity, Boston-trained surgical skills and thirty years of experience.  

When Bonnie was escalated from the Emergency Room to Mass Eye and Ear Emergency Surgery and Dr. Colby's care.  She is a Top Gun surgeon at Mass Eye and Ear and a professor at Harvard Med.  Dr. Colby is very observant, quick, straightforward and candid.  She wears elegant designer shoes with her white coat.  She pays attention to Bonnie and her subtle cues.  Dr. Colby thinks out loud, 2 to 3 moves ahead, to keep us briefed, and by turns teaches the young doctors who follow her through all exams and surgeries. 

In the emergency, Dr. Colby called the national eye bank on a Friday to get a cornea on an airplane for surgery on Saturday, knowing that she may have needed to call in a favor, to ensure that a cornea would be found and arrive on time.  Yet she easily delegates to others.  She managed to get Bonnie to go to see Dr. Cutler when Bonnie had a fever.  After the most recent sugery Dr. Colby sent Bonnie to see Dr. Jacobs when there was an abrasion of her epithelial cells.   She has amazingly skilled hands.  She is able to sit in an wheeled office chair and remove loose stitches from Bonnie's cornea with focus and ease, all the while briefing Bonnie and teaching her young doctor students.   I figure she sees 5 or 6 pre-op or post-op surgery patients per hour.  

Surgeons and doctors are only part of Bonnie's recovery.  Doctors and nurses DO physical things to Bonnie's body.  These interventions are frequently invasive and sometimes painful, and almost always an interruption.  Bonnie did an amazing turn of mind by deciding she was in the hospital to improve her health and so each time the door opened it was not an interruption but time to get to work to get better, up and out.  Surprisingly it worked much of the time, except when she was asleep, or her main symptom or pain was not yet solved and something else was being attended to.

Bonnie's family and friends provided a kind of comfort that was the opposite of the poking and prodding and the same litany of questions about symptoms.  Friends provided comfort, quiet, care, prayer, cards, photos, messages about their projects, remodels, kids and grandkids. 

Beanie Weaver would write in flowing copperplate script on cards offering prayers for Bonnie and other inspiring or funny stuff.  It was clearly a bond they shared.  Beanie was a student of Bonnie's at Penn State and they worked together at Aetna Corporate Technology Planning.  Beanie is a top notch organizational consultant, and does "post care" for people in AA after they do their detox.  She fathoms suffering, pain and the needs of people moving to recover their lives. 

Beanie would send me, cards in purple or green ink too, from time to time.  Sometimes I could not deal with the fine thoughts being expressed as I pulled the mail out of snow covered box outside our apartment and went to clear the snow off of the car to get to Brigham and Women's Hospital.  But Bonnie always wanted her daily cards from Beanie on her table near her.  Sometimes too, she was simply too sick to read.  So she stockpiled her beautifully scripted, and inspirational cards from Beanie and would read them when she was up to it.  I would find colorful cards in my jacket weeks later that were touching by virtue of their handwriting and their sincerity.  There are words and then there are deeds. 

Beanie Weaver was our friend and host during our 2 week stay, in Boston for Bonnie's most recent surgery, which turned into a 5 week stay.    When Bonnie and I staggered in with colds and then Bonnie had her eye surgery, Beanie took care of us in ways that were gentle, quiet, steady and kind.  Folded laundry, quality dinners, wide ranging conversations, good humor and letting us simply retire to our bedroom.   Near the end of our stay, Beanie hosted a "graduation party" for us when Bonnie's eye was mostly healed and I was ready to "graduate" from being Bonnie's full-time care giver.  I have graduated to simply being Bonnie's husband.  Cinderfella has retired. 

And then there are Doctors Jacobs, Johns and Rosenthal at the Boston Foundation for Sight.  Bonnie arrived as an Emergency patient (again) during the busiest week of their year.  Bonnie's newly transplanted cornea had lost part of it's  epithelial cover three times in three weeks.  They were so attached to the person and patient that Bonnie is, that this caused them a deep sense of anxiety.  We knew we needed their help, but were much more relaxed as we have been through so much, that we are used to emergencies.  We estimated that it was unlikely that Bonnie would lose her eye, and if so, at least Bonnie had good sight in her right eye, which was not the case 6 months ago.

These dedicated doctors examined Bonnie's left cornea EVERY day for 3 weeks, including every day over a weekend. 

Bonnie wants to unfold her story of working with these doctors and their skills and care, in saving her sight, in a separate post.  For tonight, suffice it to say that without these dedicated human beings, the chronic pain in Bonnie's eyes would have been intolerable, regardless of any sight she may have retained without their Scleral Lenses.

Bonnie's Scleral Lenses act as reservoirs for liquid tears that she has to refresh in each eye every hour to keep the pain at a live-able level.  Today these lenses keep Bonnie's corneas from "melting" due to her chronic graft vs. host and the pain that comes from have lost most of the function of her tear glands, and the ensuing Severe Dry Eye.

It is amazing when we are in BFS setting where you meet dozens of people with the same kind of eye pain.  Some come due to graft vs. host disease or IEDs that damage soldiers eyes in Iraq, or a variety of eye painful eye diseases.   Most of the people we meet there have searched the world over for relief from their eye agonies, and finally get dramatic relief at the Boston Foundation for Sight.  There are now clinics that can fit people for Scleral Lenses in India, Japan, Los Angeles and Texas. 

There are dozens and dozens other people from many walks of life who have helped Bonnie recover,  but I signing off now go snuggle with Bonnie before she is deeply asleep. 

/Daniel for BanD

It takes a village = Bonnie is really back and being Bonnie.

By skillful medical attention, practiced patience, prayer and amazing Grace, Bonnie is back and being Bonnie.  Our Full-On Bonnie. 

Bonnie is now arising at 6 or 7 AM.  It takes her an hour of careful attention to deal with her eyes, scleral lenses, myriad medications, mouth treatments and skin treatments.  I get tired just watching her get ready for her day and then again for bed each night.

Bonnie walks steadily around the house on her tiny 7" toe-less feet.  By 8 AM she is facing dual monitors and editing our book in her office.  Bonnie is peaceful, deeply grateful, and ambitious again.  Bonnie drove herself for midweek bible study, and for a new haircut and to the eye doctor.  Yesterday she went out to the local supermarket to shop for ingredients for a corn salad recipe we are trying to perfect.  We need something better than baked beans to go with our apple wood-smoked pork pulled-pork shoulder.  We now have our own East Carolina apple vinegar-based "dipping" sauce.  But we are still dialing-in the sweet corn salad recipe.  We have learned that it needs a full-flavored olive oil, red and green peppers, red onion, lots of cilantro and some lemon juice, but there is a missing flavor.  Anyway Bonnie is definitely back in the kitchen!

This morning Bonnie whipped up dutch pancakes which rose perfectly in her new 9" Pyrex pie dishes.  She bought eight such dishes so she can serve breakfast to the whole extended family.  Now Bonnie is putting away her Stuben crystal and white china, which she had stored in the lock-off closet for the summer.  Bonnie simply re-purposed her wheelchair into a hotel baggage cart,  loaded it up with boxes and pushed it to her destination.  Why wait for Daniel carry stuff?

Bonnie is expanding her relationships with our 3 grandchildren at Jennifer and Scott's house.  Each one notices that Bonnie is much more "in the world" than when they last saw her 6 weeks ago.  Bonnie now sees with both eyes, and sunlight no longer causes her headaches.  If our eyes are windows on the soul, imagine what having your left eye open means for human contact.

Lucas suddenly beamed when Bonnie went in to his pre-school room to pick him up.  He immediately noticed that Bonnie had a new haircut.  She looks like a tennis player.  No more chemo-fried patient look for Bonnie!  Abigail goes wherever Bonnie is so she can huddle with Bonnie over a book or her "babies".  She makes delighted sounds as she draws with Bonnie and then they explore alternate uses for her new Pink Boston Red Sox lunch bag/purse.  Zachary loves talking with Bonnie about bigger subjects.  He asked recently at the dinner table what is Jewish?   Zac was only too happy consult with Bonnie about what would make an appropriate birthday present for his brother.  He has to think about it and will consult with Bonnie when he has had time to fully weigh the matter. 

This month we have been knee-deep in the chronology of Bonnie's chronic illnesses.  Bonnie is now hammering down some 600 pages of weblog entries.  This exercise brings home an African saying  "It takes a village to raise a child /human being".

It is said that this thought was expressed in the Nigerian Igbo culture and proverb "Ora na azu nwa" which means it takes the community/village to raise a child. The Igbo's also name their children "Nwa ora" which means child of the community.  Whatever the origin of this thought, Bonnie and I have become children of our communities.  That means you and a thousand "others", without whom Bonnie would have disappeared over the horizon have constituted our web of help.  Most of Bonnie's doctors have told us that their treatments were necessary, but insufficient; and that in their view their treatments do not fully account for her recoveries, particularly her last one. 

We are currently laboring to ensure that our book sheds more light on the discussion around health care.  We have come to understand that institutions, doctors, drugs and insurance are only a fraction of what it takes to produce a liveable life in the face of chronic illnesses.  And that is the Good News.  The true hope in the next century of health and care for the developed and developing worlds is that it takes a village.

In the next few posts, I will illustrate the village / community that we relied upon to bring Bonnie back from the precipice for the 4th time in 7 years.

We are deeply grateful to our family and friends, and doctors, and nurses, and social workers, and housekeepers and ministers, monks, rabbis, midnight pharmacists, rehabilitation specialists and total strangers, who have each had a hand in Bonnie's return to being Bonnie. 

There is no greater gift to receive than Bonnie in her natural state. 

/Daniel for BanD

Back to the Beach -- Joy, joy, joy!

I’m preparing to write the next narrative chapters of our book; as part of that, I moved the text to Scrivener and have been chunking the 578 pages into individual blog units and rearranging them from descending to ascending date order.  The repetitive tasks to accomplish this took hours. doing it had a certain mediative pleasure.   You might like to know that there have been 331 posts and 876 comments.  The blog has been viewed over 47,000 times with average daily viewing about 35 times.

The great joy of my blog translation work was reading each and every comment that you have made over the nearly five years (since December 2005) of blogging.  Thank you.  Whenever I was most in trouble, the comments extended many pages of prayers and good wishes and the daily viewings skyrocketed.  I remember Daniel reading me these comments during those days, and I can remember the comfort and hope I took for them.  Now I am unpacking how we got here ... relative good health, prospects for a wonderful life even in the knowledge that anything can happen without warning as it did a year ago.  It is clear to me how much your love and support have sustained both Daniel and me.  What can I say except a humble, “Thank you.” 

A theme of my blogs over the years has been “going to the beach” and “leaving the beach.  The blog certainly provides a good record of our comings and goings.  I see how eagerly I left for NC each and every time, and also how much we appreciated life in Cambridge, particularly EDS friends and lessons and the opportunity to have our fine doctors.  We are loving our time here in the beach house.  We plan to be here all of October and to return to Boston for checkups the second week of November.  After Boston we expect to go to Chicago until just before Thanksgiving, following the State College, Pa to Ann Arbor, to Chicago, to St. Louis trip we had hoped to do in August.  After we get back to the beach I hope to just stay here until mid-June when we pack out for the summer again.  PLEASE DO COME to see us.  We love to share the beach with our friends.

Dr. Kelly says my eye looks good.  Tomorrow I start to remove and clean my left lens twice a day.  A week from today I hope to be taking it out for seven hours at night.

We saw Jennifer and family yesterday.  We had a blast and so did the kiddos.  Thursday we go to see Zac who at 8 is playing on the “traveling all star team.”  Saturday we go to Lucas’s second soccer game.  Abi continues to amaze us.

Love and peace to you,

Bonnie for BanD

Back to NC; Hooray for Beanie

Quick note here.  We saw Drs. Johns and Jacobs this morning, making more than two weeks of seeing them everyday. My eye is healed for now, though I've been here twice before in the last three weeks.  I talked to my eye doc in NC.  He is in the office and can stitch my eye shit with a placenta if I regress and need that. 

Given this, docs here agreed we could go because they know him, trust him, and think he did an excellent job on my right eye operation.  They would not approve side trips like to Chicago for now.  We are to take a direct route home and see Kelly at 2:30 on Monday.  We will stop and see Sue and Paul in Norfolk on Saturday; I will go to church where Sue will preach on Sunday.

I will be wearing the lens, taking it out, and cleaning it once a day over the weekend. 

My healing continues.  Driving myself two hours a day on highways, town streets, and curvy back roads has rebuilt the confidence in driving I lost in two years of little or no driving.  I've been without my wheelchair for almost six weeks; we never took even the walker out of the car.  I have used my cane exclusively for balance.  When my left eye is healed I expect nearly normal corrected vision in that left eye.  My right eye often, not always, measures 20/20.  Amazing. 

Yesterday we celebrated 1 month of staying with with Beanie.  We've had fine meals all week starting with the "graduation dinner" she made for Daniel on Tuesday.  I'll talk about that in a later post.  We will really miss her and Rowan her Doberman.  We've been that Man Who Came to Dinner and never left.  And it has been great.

Tomorrow Beanie has potential buyers coming to look at the house and next week more are scheduled.  With stimulus incentive for first time buyers doing really great in New England, it looks like the "move-up" buyers have now sold their houses and are searching for their next one.  This beautiful 4K sq ft house is right here for them to move in.  It is indeed time for us to move on and for her to sell and move on with her life.  Please send your miraculous good wishes this way to help find the family who will love this house and buy it for their own.

Love to you all, Bonnie for BanD

Julia and Me

It's uncommon that Hollywood produces a movie for us older women.  Now that I am one, I feel a bit obliged to support it.  Besides I have long been a Julia Childs fan from afar.  And so I determined that I must pay the bucks go to see Julie and Julia at the theater.  Daniel didn’t quite understand why I didn’t just wait for pay-per-view.  Beanie was an enthusiastic collaborator in the venture. 

Ironically the weekend before we went we spent the evening, and eventually the night. with our friends Julia (born Julie Ireland, Ken’s sister) and Tom Childs.  We had glorious food and heard stories of her own culinary adventures with her famous name.  On Monday Beanie and I laughed through the movie in the company of fifty women who looked a lot like us.  Go Hollywood.  I’ve since found guys, like our nephew Adam, who also sing praises to the movie.  Daniel will enjoy it pay-per-view.
Now I am a big Julia fan.  I’ve ordered the DVD set of her Cambridge TV show.  It is best to get this from PBS who has only a 2-4 week backlog of orders.  Amazon won’t say when they might have stock of the 6-box set.  PBS had a special on it when I ordered it and so even with shipping it was cheaper.  If you want to see 27 episodes free from her whole career as a broadcaster, check out:
http://video.pbs.org/program/1073557581/

And then I set out to eat some Julia Childs food, without cooking it of course.  I had heard that at (famous chef) Jasper White’s Cambridge Restaurant called Summer Shack, he served a lobster from her recipe.  In tracking down this notion on Google I found that “Pan Friend Lobster” is his recipe but that she went there often to eat it.  Here is a comment from a former cook at summer Shack:

“Yes it was so good that Julia Child came in multiple times while I was there.  She loved the Pan Roasted Lobster.  She told me one of the times I was lucky enough to meet her that she loved the Summer Shack because it was not afraid of butter.”

I had wanted to go to Summer Shack when we lived here and drove by it often, but with my restaurant and budget limitations, never did.  One goal before leaving New England was to EAT A LOBSTER. We planned to take Adam and Bean for a celebrate New England with an early dinner on Sunday.  The forces of history seemed to be converging: this was the time for Summer Shack.  Then Beanie told me that she had gone with a friend to a restaurant on Rt. 9 that was fabulous and casual N.E.  Well, maybe this wasn’t the time after all.  Why drive all the way to the other side of Cambridge?  When she came home Sunday morning, she gotten the name of the restaurant and handed it to me:  Summer Shack!  The forces of history indeed converging.

I ordered a TWO POUND lobster; I’ve never splurged in that way .  Here is what it looked like when delivered. I did give Daniel one of my claws, otherwise, I literally licked my platter clean.  Here’s a reviewer comment that matches my own experience:

The lobster was soaking in butter, chives and lobster roe. Provided with a lobster bib and a cracker, I went to town and completely destroyed the lobster as savagely as I possibly could. When I was done, I rolled my corn on the cob in the lobster butter...it was pure unadulterated joy.

In addition to soaking my corn on the cob, I also used two dinner rolls to get more sauce.  I wish now that I had asked for a spoon so I wouldn’t have to leave that last bit.

I haven’t been successful in finding the recipe online for free.  I know that it is in Jasper White’s cookbook on lobster, but we only get lobster once a year at the beach... a church fund raiser.  We have lots of crabs, oysters, scallops, and shrimp though.  I’m debating a $20 book on lobster.  If any of you have this recipe, please send or post it.  I have found that it uses chervil as well as chives.  I’m thinking of a fall herb garden in planters.  Suggestions welcome, please.

We are still at Beanie’s and continue to enjoy her fine hospitality.  I am soon to leave for my daily eye appointment.  We believe that we will be going back to the beach later in the week.  But then, as you know “we can never tell.”

UPDATE:  Good and bad news at the eye doc today.  I have 20/40 vision in my left eye, showing when I can stop wearing them 24 hours a day, the swelling will go down leaving me with pretty good vision.  Bad news is that I can't go to 15 hours a day yet.  The defect grew appreciably when I didn't wear them last night.  We are taling it day at a time, going every day to the Foundation.

Love, peace, and keep that pressure on our President for real health reform,

Bonnie for BanD

A Fine September

I can remember when I first moved north from Texas that each September I was startled by the sudden change of weather that comes promptly on September 1.  It is as if God knows we are going back to school, summer is over and so is the summer weather.  It happened again this year.  We were chugging along with the humid hot days of Boston in the summer when POW September brought the preface to autumn.  The days now are in the mid-70s and the nights in the mid-50s.  The humidity is gone.  Everyday we have a sunny, dry, temperate day.  We are loving it.  Beanie is out weeding and tending to her gardens; yes we are beginning to get ripe tomatoes if we get to them before Rowan, Beanie’s Doberman Pincer. 

    Daniel and I love to sit on the patio overlooking the 2+ acres of landscaped yard,  Here's a picture I took of myself and a picture of the backyard.  You can almost see my left (open, operated) eye.

I am driving 40 miles each way to see the fine folks at the Boston Foundation for Sight.  Traffic jams along route 95 (our stimulus money at work on the highway, yeah) led me to find an alternative route through Deedham on my way to Needham.  I get to drive through quiet, quaint New England; what a joy.  I love North Carolina.  Being raised by the ocean (Gulf of Mexico), NC’s coastal plain feels like home to me.  But I can never get enough of beautiful New England, especially as these fine days lead into the turning leaves of autumn.

Still no word about when the doctors will release me.  The “defect” on my operated eye grew larger over the weekend, but now it is getting smaller.  Today it is half the size it was yesterday.  The docs are clear:  I’m here until the defect is healed.  Tomorrow is a two-doctor day, we’ll be going both to the Foundation and to see the surgeon.  Then Dr. Johns will come into the office over the Labor Day holiday to check my eye every day.  The dedication of the doctors at the Foundation continues to amaze us.  Today the woman from Tracy CA left after two weeks of daily visits.  She was one of the first bone marrow transplants in 1980 when she was sixteen.  She has had the dry eye problem for decades.  Another couple from British Columbia are leaving today.  But there is a new crowd in the Foundation lunch room.  A woman from New York went to Texas to see a doctor about her eye condition; that doctor referred her here.  She has been going to ophthalmologists in NYC for a decade without relief and no one there told her about the Foundation.  That is the universal story in the lunch room, along with stories of how much relief people are getting.

We are just hanging out.  I’m getting a bit homesick for Southern cooking so we may try the chicken fried steak at the local Cracker Barrel.  I do have lobster and much more Indian food in my agenda before we leave.

Love and peace, Bonnie for BanD
 

My Third Birthday

It’s been THREE years today since my stem cell transplant.  Daniel and I are thankful to Jay for his donation.  We feel especially blessed that such a spiritual person from such as spiritual family was my donor.  We know that God has blessed us.

Here is a picture of the actual event three years ago.  There was no “operation” of any kind, rather it was like a blood transfusion.  Those of you who have had transfusions will recognize that the liquid is bright pink and not dark red like blood.  After I got one bag of stem cells, I was surprised to get a second large bag.  The doctors and nurses who do this all the time were also surprised at the volume of stem cells. 

Normally a transplant does not work unless the percentage of leukemia cells in ones marrow is less than 20%.  Chemo did not work well on me, leaving me with too much leukemia.   More than 60% of the cells in my bone marrow were leukemic.  Yet, before the transplant my bone marrow was very low on any kind of cells, healthy or not.   The only hope for the transplant was that I was so “hypocellular.”  Those big bags of stem cells did the trick.  Within two weeks, much to my doctor’s surprise who thought I only had a 10% chance of a successful transplant, I was leukemia free.  A year ago I celebrated my second birthday.  Few people relapse with leukemia after two years.

Unfortunately, passing that second birthday was deceptive for me.  While I was beating the odds for leukemia relapse, I was not paying adequate attention to my chronic graft vs. host disease (GHVD).  A sunburn in the summer had caused a flare of GHVD and I was on a relatively high dose of prednisone and another immune suppressant.  My ignoring the immune compromise this created led to my fall and all the trauma of last October and afterward.

I am doing better.  My vision improves each day.  I’m very glad I’ve been able to have the corneal transplant in my left eye.  I am able to drive myself to the eye doctors whom I see EVERY day. 

We’ve been here in Boston for three weeks now.  Beanie continues to be wonderful to us as I slowly heal.  None of us expected our one week stay to last this long.  Tonight we will have steaks and a grand celebration of birthday #3.  Hopefully by Friday we will know what happens next.

Love and Peace,

Bonnie for BanD

3-D Movies

In June Zac and I picked up Lucas from the Learning Center and joyfully headed to see the new Ice Age movie in 3-D.  Rosemary had been telling me about the amazing new technology.  I loved the old 3-D and was really looking forward to seeing the new stuff.  I planned carefully to arrive in plenty of time so that we would not miss a moment.  As I approached the theater it suddenly occurred to me that I couldn’t SEE a 3-D movie.   I imagined that all I would see was outlines of the characters and sets in either red or blue.   I told Zac about this.  I don’t know that he really understood my amateur technical description of stereo vision, but he assured me in typical Zac fashion that it was alright.  We could see the movie in 2-D.  We arrived in time to do that.  I was the only one who was disappointed. With my new operation, I believe I will someday be able to see a 3-D movie. 

My eye is healing much faster than in January of 2008 when I had the emergency transplant.  Still all is not great.  I saw my surgeon a week ago Tuesday for the emergency I talked about in my last post. She was very pleased with how my eye was healing.  Recall that she had put a piece of placenta (called an amnio) on my eye and stitched it mostly shut with just enough open to inspect it.  When we talked about when we might unstitch it, she said she did not want to do than until the amnio had completely dissolved and that could be weeks.  She was certain that it would not dissolve in the week before my next visit.  But surprise; it did.

Yesterday it had completely dissolved.  She decided to unstitch it for a couple of reasons:  first it looked like I might have an abrasion (a hole in the surface layer (epithelial) and second she had secured the amnio with a ring that needed to come out since there was no longer an amnio.  When she took the stitches out; I could see better than I remember seeing out of that eye in a couple of years.  My vision is not good in that eye, but I am much more able to see shapes, such as Daniel’s beard and glasses.  Before the operation I couldn’t see any detail of faces; in most light conditions I couldn’t see heads. 

However that abrasion is a problem.  Colby wanted me to see Drs. Jacobs and Johns at the Boston Foundation for Sight right away.  The Foundation people are the ones who have helped me be so much more comfortable as well as saving my eyeballs from damage due to ultra dry eye.  These folks are the most dedicated doctors I have ever had (and I have had many).  When I first got the lenses they make, one of them came into the office each day over a holiday weekend to check my eyes.  They define hospitality.  Not only do they have wireless internet and computers for patients to use, they have a fully stocked snack kitchen for patients.  Patients come from all over the world to be fitted for these miracle lenses.  Dr. Rosenthal, who invented these scelerial lenses, invented the original contact lenses and started the Foundation with the money he made by selling the patent to them.  The office is more and more filled with people from all over the world for whom these lenses are life savers.  Medicare only reimburses about half of the $6000-7000. cost and many insurance companies don’t do that.  Many, many patients have to get free care.  These doctors just don’t turn away people in pain.  This is a very busy week for them; their busiest of the year and yet because they knew I was in pain they made time to see me today, tomorrow, and probably Friday.  I have a soft contact on my eye until tomorrow when they will make a new left lens for me.  I think the prescription will let me see letters.   We’ll see.

We’d planned to leave Saturday for Chicago via State College to see the Bensons, but plans are on hold for a couple of days.  I am hoping to be able to see Daniel's mom Margery as well as friends.  We’ll see.  You know my motto:  well, well, well, you can never tell.

Meantime, we are so comfortable at Beanie’s.  She the the best hostess.  We came home exhausted after a day at the docs to find a beautiful lamb chop dinner.  Yummy.

Pray for the fine senator we lost today.

Love and peace.  Bonnie for BanD

Life: Post Surgery

It’s been more than a week since my corneal transplant/cataract removal operation.  I’m doing OK, not really great.  I have overcome the experiences of my funny hospital stay.  On Sunday night my left (operated) eye started to tear.  I don’t have tears; so where did this liquid come from?  My only answer was that my eyeball was leaking.  It wasn’t much, just a few large tears.  My eyeball wasn’t sore and it felt “firm.”  On Monday morning I called Dr. Colby’s office and talked to one of her assistant docs.  (She has a cadre of young docs who are more than interns; I suppose they are residents seeking certification in corneal surgery.)  I discussed the tear situation; she assured me that Dr. Colby did a really good job of sewing the cornea and that it was highly unlikely that my eyeball was leaking.  We discussed how tear glands can produce some tears which might be trapped inside my lid (since it is sewn) and them come out all together.  We agreed that I would come in to she her and Dr. Colby the next day.  Later Monday I started to get a fever that eventually got to almost 101.  I was talking with Zac when I had to throw up all the pills I recently taken.  This was all bad.

My visit at Colby’s office went well.  No sign of infection or perforation.  All the docs who saw my eye (5 of them) thought the work was “beautiful.”  But Colby wanted me to get to Dr. Cutler (transplant doc) right away because of the fever.  So, off we went to Dana Farber with me on the phone, calling Cutler’s office to get an emergency appointment. When we got to DF, the receptionist again paged Cutler about me.  When I saw him crossing the waiting room, I wasn’t surprised to see him.  But he was surprised to see me:  “WHAT are YOU doing here?”  We did get to see him after every imaginable blood test for infection.  The tests were negative.  I am on antibiotics again.  I haven’t had a fever since Monday, though I continue to feel not quite well.

This morning I got an email from Malcolm Slaney saying that two patents we worked on together at Interval have now been published.  My, it is fun to hear this after all these years (dating to 2000).  Malcolm has done the hard work of writing them initially and then rewriting them to meet examiners’ objections.  Daniel and I talk often of how our  Interval visions of the future of life are more and more our real life. These are TV related patents:  AUCTION FOR TARGETED CONTENT and TARGETED TELEVISION CONTENT DISPLAY. 

I’m having a good time here with Beanie.  Today we spent the day each working on our own book.  She is a mentor to a half dozen people in AA and does amazing work with them.  It is heart warming to see how much good she does with her AA work.  Bean has Patriots’ tickets as part of a set of season tickets on the 50 yard line.  She went to the opening game last night.  Daniel watched it on TV.  I went to bed!  It was so much fun hearing about it this morning.  I’ve become quite adept at enjoying virtual experiences from stories regardless of media.

Daniel went to Amherst to see the chiropractor he used to see in Palo Alto and also two of his high school teachers who arew still his friends.  How many people still know any of their high school teachers, much less are friends with them!

Today I continued not only writing the book draft, but also learning new software.  I’m trying to figure out how to do things on the Mac that I take for granted in Windows.  If anyone knows how I can get a “forward delete” function in addition to the backspace that Apple calls “delete,” I’d sure like to know about it.  I figure since they now have a way to do right click, there must be a work around for forward delete.  I have a couple of other questions, but Lyn and Taro are looking into them with the Apple experts.  I’m also making an appointment to see a Genius next week when we go into Boston.  I’m slowly learning the ins and outs of three new applications for writing.  Scrivener and I are getting along pretty well.  Exploring the Scriv forum today I learned about Bookends as a Mac alternative to Endnote.  I think that will stop my hair pulling about references (I don’t have enough hair for hair pulling). Daniel put iWorks on my Mac and so I now have a real word processor that brings me joy as I write this, though again there is a learning curve.

Oh, yes.  I had a chat with son Ron.  I was telling him all the stuff about unexpected tears and fever.  He asked after that how my vision is in the left eye. VISION was in fact most of the reason for the operation.  The answer is I won’t know for a while.  It may be weeks before we unstitch my eye.  From the corners of my eye I see better than before.  I can count my fingers, but I don’t have anything like “good” vision.

Love and Peace, Bonnie for BanD