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I updated my End of the Beginning post and somehow none of it was saved, so, try, try again. The title comes from a song by my good friend and talented singer/songwriter John Flynn : http://johnflynn.net  You can hear the song there.

The lovely and talented John Flynn

The songs resonates with me because I realize there are far more years behind me than there are ahead. I have lost one parent:

Sterling L. Hornsby Sept. 27, 1920-Dec. 24, 2009

My mother is 90 and a half, and I don’t think it will be long before I become a motherless child:

Velma Ruth Stewart Hornsby, April 2, 1921-

Mother and Dad lived for 40 years in the old house where they watched 3 generations grow up:

family on the porch

grandchildren, great-grandchildren, even great-great grandchildren:

T

Jan. 2010 DFW Cemetery

The time came when Mother could no longer stay in that old house:

Our experiment with sending her to live in a fancy “assisted living” facility didn’t work out. After a mistake with her medication that almost killed her, my sister Gwen took Mother home with her.

Mother's lonely new home

So now I find myself at the beginning of the end, although I hope it’ll be a long time before I get there. John’s song says “The journey of a single step can begin with a thousand miles.” Here was where I started:

Shirley Jean Hornsby Sept. 1946

I grew up, went to college, got married:

Sept. 2, 1967

We had kids:

Baylor and Mom Oct. 1971

Jeff and Mom, Bangkok, July 1973

Then we had some grandkids:

Ashley b. Sept. 1, 1994

Amber and Autumn, Jan. 27, 1996

We got divorced, but later became friends again. I had some adventures, did a lot of traveling, met some interesting people and some great friends, mostly because of Arlo Guthrie:

Shirley, Arlo & Annie Aug. 1989

"Matterhorn" in Okemah, Ok.

Guthrie Center Fall Revival - Blunderites all

Guthrie Center 1996

John Flynn and the Flynettes, Okemah WoodyFest

To quote John again, I’m thankful “for old friends you can count on, even though their ranks are thinning.”

Alasdair and Shirley, Macchu Picchu. Miss you always


Dennis Lachappelle, best bus driver and best friend anyone could ever ask for.

Goodbye, old friend

There are others I dearly miss: dear, sweet Jack Dultz, Gay, who will always be sitting at the front table at the church, Gerry Harper – your daughter grew up to be as wonderful as you were, sweetheart. So many friends and loved ones gone but never forgotten.

Our sons grew up:

Baylor and Jeff

Our granddaughters are teenagers!

So, what happens next? I need to work on that Bucket list – maybe finish the mystery I started writing many moons ago. I have continued to write and get published – here’s the launch of the latest anthology from the Final Twist, Oct. 2011:

Shirley at Murder by the Book

Chorus of The End of the Beginning” “Oh, the journey you make, from the first breath you take, to your last dying day, the mystery will take your breath away …”

Kris Kristofferson, who accompanies John on this song, has a song with a similar line:

From the rockin’ of the cradle to the rollin’ of the hearse, the going up was worth the comin’ down. I do believe he’s right. Journey on …

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The End of the Beginning

John Flynn

The title comes from a new song by my friend John Flynn, a very talented singer/songwriter and a fine human being. http://johnflynn.net

It resonates with me, because I realize, like it or not, there are far more years behind me than there are in front of me. I’ve lost one parent:

Sterling L. Hornsby Sept. 27, 1920-Dec. 24, 2009

My mother is 90 and a half, and I don’t think it will be long before I become a motherless child:

Velma Stewart Hornsby April 2, 1921-

When last I wrote, she was just leaving the old house where she and Dad lived for 40 years, watching grandchildren, great-grandchildren and even great-great grandchildren grew up:

leaving home

We had high hopes that she would be happy in the fancy “assisted living” facility where she was promised, and paid for, the full level of care. Being almost blind and deaf and in a wheelchair, she was helpless to do the simplest things. Even though my sister checked on her every day, and I made several visits, she did not get that wonderful care, and the staff did not help her find friends. One day my niece found her sprawled, unconscious, on her bed and asked the nurse to check on her – “Oh, she’s fine, she always sleeps like that-”  Terri insisted on having them check her blood sugar. It was 60. Any lower and she would have gone into a diabetic coma and died. Due to a reaction between a morphine shot she’d had at the ER after she fell and hurt her arm and a pain pill she took later, she came close to death. My sister came and took her home with her. She sits in her room, in her chair, listening to audio books. Sometimes I come and take her to the old house to go through all the stuff collected over a lifetime, and she rides her electric scooter through her garden, and that makes her happy – and sad. We are getting ready to sell the house now. A family with one-year old twins want to buy it – it’s a fixer-upper and they have skills and not much money, so it would be a good fit. Mother wants to know that another family will live there and love it like she did.

Thanksgiving was – well, she put it best, when my cousin called to ask about it -” pitiful.” Only my sister, brother, and niece were there, and the dinner was store-bought. Mother was horrified that the cornbread dressing had sugar in it. Horrors! My oldest niece wrote on FaceBook that it was the first time she could remember when we didn’t gather at Granny and PaPa’s house. Seems like when my dad died, the heart left our family. Mother declared that we WILL all gather there for one more Christmas, and I hope she gets that wish.

The end of the beginning … my sons are grown, I’m not likely to have any more grandchildren – but I do adore the three I have. I have wonderful friends, but some are not doing well and some have gone on to the next world. As John says, “old friends you can count on even though their ranks are thinning.” If I want to achieve the things on my Bucket List, I need to get busy.  “The journey of a step can begin with a thousand miles.” Here I go, taking that step. Maybe I should start with finishing that mystery I’ve been working on for … a good long while.

Book launch Oct. 2011

Texas in Springtime

My last couple of posts, about my mother’s unhappy experiences in moving from her home to “assisted living,”  have been downers, and it’s time to talk about lighter subjects. During the last two weeks of March I had some fine adventures out in the Texas Hill Country, back in Houston, and up in Dallas.

First off, my friends Loretta and Beverly and I went to New Braunfels to see Arlo Guthrie perform at Gruene Hall, one of the oldest dance halls in Texas.

Standing in line at Gruene Hall

The show was great. The lovely and talented Burns sisters, Arlo’s son Abe, and his band opened the show – for two hours!. Then Arlo came out and they all performed for another two hours! I met up with my Dallas friends Jay and Shelley, my dear friend Doris Judd, who I met at a writing workshop, and spent some quality time afterwards with The Burnsies, Jimmy LeFave, Kil.Ler, Arlo’s former bus driver, now an agent for musicians, based in Austin.

The Burns sisters, Jimmy LaFave, and Killer

Doris, Shirley and Jay - Gruene Hall

Arlo and Shirley Gruene Hall March 2011

Shelley, Killer and Shirley Gruene Hall

A good time was had by all. Next morning, the Three Musketeers traveled farther west to visit my friends Nancy and Tony Parker-Simons, who manage the Utopia Animal Rescue Ranch, founded by Kinky Friedman. I’ve known them for several years, and two finer people cannot be found. We spent the afternoon talking, eating, laughing, touring the ranch, visiting with the animals, and laughing some more.

Beverly, Loretta, Shirley and Nancy at the Ranch

Tony Utopia Animal Rescue Ranch March 2011

Tony has become an excellent photographer. He showed us some postcards he’d made that were National Geographic quality. One took my breath away, literally – a hummingbird caught in mid-flight. He has an eye for capturing nature – plants, animals, and oh yeah, even people – he took some that made me look good, and that’s not easy to do!

Nancy in Outer Space March 2011

In addition to being a Fine Human Being and one of my long-lost sisters, Nancy is a story teller, a writer, and a kind and loving woman with a heart bigger than Texas. Do I love her? Indeed I do!

Reluctantly we said goodbye to Nancy and Tony and all the critters and made the long trip back to Houston. But the fun wasn’t over yet! The next Tuesday Loretta and I attended the opening of a new play, “Becoming Kinky” – the story of Kinky Friedman in three parts. It was truly a great show, and we bonded with the couple sitting next to us, Mark and Joyce, then got to visit with Kinky and his sidekick, Jeff Shelby, aka Little Jewford.

Shirley, Kinky, Loretta, McGonigels Mucky Duck March 2011

Loretta, Shirley, Little Jewford, Joyce, Mark, and Kinky

We closed the place down, and as we drove away I saw Kinky in a meditative mood – or was he just wishing Jeff would hurry up and take him home?

Kinky Friedman after the play - March 2011

The fun was over for awhile, and it was back to work. In my next installment, I’ll talk about my mother’s 90th birthday party, and update her status on the “assisted living” experiment. There will be some good parts and some awful parts … but for a few weeks, my world was full of friends and fun and Texas in the springtime.

Leaving home, part two

The day finally arrived for Mother’s new stage of life to begin. I arrived from Dallas Friday afternoon, expecting the bags to be packed and the special treasures Mother wanted to take all selected. She and my niece had been working on it for two weeks, my sister said. I found one box, with some sheets and towels, and that was it. Somehow I figured out Mother’s heart really wasn’t in it.  She did know she wanted her bed, a few end tables, a tv, photographs, and a recliner. Dad’s recliner, not hers. I made the selections for her: a photo of her with her first husband and daughter Gwen, another photo of her with Gwen and my father, a photo of her first husband with his brothers, her brother, and, for some reason, my dad’s brother, all in uniform, a photo of Trent, her great-grandson who did not make it to his fifth birthday, a raggedy stuffed bunny that had been his, and my father’s flag. I started to bring the vase containing nine white silk roses and one red one, then I put it back on the mantel. It is part of our family history. The roses represent the ten members of mother’s family – her parents, Irvin and Lizzie Stewart, and their eight children. At one of my aunt’s funerals, a tradition was started: each time one of the siblings passed away, a family member would take out a red rose and place it in his or her parent’s casket. A white rose would be put in the vase. When Mother’s baby sister Frances died, my family got the vase. Mother is the last of the Stewarts, and it makes me sad to look at that single red rose, knowing that soon there will be ten white roses. I decided it was best left where it was until the time comes.

Thomas Ervin Stewart - Sarah Elizabeth Davis

The children of T.E. and Sarah E. Stewart

 

Stewart 50th anniversary, 1955

Feb. 12, 2011 on the old porch

While the rest of the family took Mother’s furniture to her new home, I took her to Walmart’s – an outing she’d been asking for for ages. She said nobody ever had the time to take her, and she wanted to see things for herself, not have others just pick out something. In truth, she can’t really “see” much of anything, but it was the principle of the thing. I couldn’t put her on one of the scooters for the disabled, because I had visions of her plowing through the displays, mowing down anything in her path, so I pushed her in her wheelchair. We spent some time looking at the microwaves, trying to find one that she could work with minimal effort, and found one with numbers she could see. Then as we went through the towel section, she spotted a hot pink bathroom rug, and we bought that. I asked if she wanted the matching towel, but she said “no, then I’d need the hand towel, and the wash rag, and it’s just too expensive.” I will get that for her on my next visit, I can afford $20 and she loves pink.

When we got to the facility – I can’t bring myself to call it a home–nice as it is, it ain’t home. The furniture was arranged, but Mother decided it needed to be re-arranged.  She wanted her chair to be next to her window, so she could watch the comings and goings of the residents and their visitors, and maybe see a bird or two. When her world view became small because of her disabilities, my dad used to put birdseed and bread crumbs on a staircase outside her window at home, and she spent hours watching the antics of the birds and squirrels haggling over the food. We bought every variety of squirrel-proof bird feeder there is, but none of them worked for long. It tickled her to see how resourceful those squirrels could be. Now she watches the resident we have already named The Cigarette-Smoking Man, who drives himself outside every hour or so, wrapped in a blanket during those chilly days, stops by a pillar ten feet from her window, and lights up. We walked by him several times during the weekend, and he never smiled or even acknowledged our presence.

I stayed with her the first night. She was sick, and didn’t have to make the dreaded trip to the dining room while I was there. Neither of us slept much, but I didn’t hear her cry.  She’d told her niece she probably would, and I said it was okay to cry if she wanted to. She can cry without making a sound, so I don’t know if she did, but I did. Quietly. Next morning, she didn’t eat any breakfast, and she didn’t care for the coffee. My sister came around lunchtime with snacks, shower curtain, and other necessities, and I told Mother I had to go back to Houston. I’d told her at the beginning of the weekend I would be leaving Sunday, but she looked at me with sad eyes and said “I was hoping you could stay another day or two.” I explained again that I don’t have much vacation saved up. I didn’t say I was saving it for when the time comes that I’ll need to be there, the time when she takes that last journey.

It’s been almost two weeks now, and she still doesn’t have a telephone. I get my news from my nieces, my sister is too busy taking care of things. I heard that she complained that an old man had been grumpy with her at dinner – I wondered if it was the Cigarette -Smoking Man. I want to go see her this weekend, but I’ve promised her a 3 day trip to her hometown of Comanche to put flowers on her parents’ graves, and to Dublin to visit with her cousins, nieces and nephews. That trip from Houston to Dallas has gotten longer and harder on me physically and emotionally, but I will keep making it as often as I can.

Looking into the future

Leaving Home, Part One

I remember vividly my first day of kindergarten. Because of my September birthday, I was the youngest in the class, and very shy. In those long ago days, mothers usually didn’t work outside the home, and kids didn’t routinely go to day care. This was the first time I was away from my mother for more than an hour or two, and I was scared and homesick, and I cried. The teacher called me to her desk and let me sit in her lap (probably can’t do that any more, but those were innocent times)  Finally I calmed down, and I soon learned to love school, but those first days in a new environment were difficult.

Shirley Jean Hornsby

The first time I had to leave my two-year old at day care, he wailed and hung on to me as tight as he could. A grandmotherly lady (she probably looked like I do know, but I was 30 and she looked very old) took him into her arms and sat in a rocking chair. She told me he’d be fine, and eventually he was, but I felt such guilt sending my baby into the care of strangers.

Jeff 1975

One of the hardest goodbyes took place the summer after my divorce was finalized. I went to Missouri to work on a dig, and my sons stayed with my parents. They came to Missouri to celebrate Jeff’s fifth birthday. Jeff wasn’t yet old enough to understand that things would never be the same after that summer, that something precious was broken, but his big brother did. The pictures are heart-breaking. Jeff is smiling, splashing in the swimming pool, giggling about the trick candles that wouldn’t go out. My dignified dad was wearing a party hat, but his face was solemn.  In one shot, I have my arms around the boys. Jeff is smiling, I am trying to smile, and Baylor looks  like he’ll never smile again. When it was time for them to go, he held on to me for so long my father finally had to gently pull him away. It took all my strength to get in my car and drive away, when my mind was screaming, “quit that job, take your sons, and go home,” but there was no going back.

Velma Ruth Stewart and Grandma Davis 1921

Now I am a grandmother, and my sons are all grown up, and I will be taking my mother away from her home of 41 years, trusting strangers to care for her. She is 89, closing fast on 90, and we all tried to honor her wish to remain at home until the end, but she is almost blind now, is a brittle diabetic, has congestive heart failure, and the list goes on. She knows she will be safe and well-cared for at the assisted living home – she’d better be, or the staff will answer to a very large and angry family.

PaPa surveying his kingdom

I’ve written about how my silver-haired daddy took care of her every need when she became so ill, even as he grew frail and his mind started wandering. We tried to get him to take it easy and let us help. I asked him “what will you do if you fall and break your leg, who will take care of Mama then?” He replied “I’ll take care of Mama even with my broken leg.” Then he did fall, and he broke his elbow, and the doctors couldn’t fix it, and through a series of hospital and nursing home neglect and error we lost him on Christmas Eve, 2009. For the first few months, family and friends and neighbors rallied around and stayed with Mother, fed her, managed her medications, but as always happens, the help gradually stopped showing up. Medicare sent a nurse and an aide after each hospitalization, and there have been many, but once she was “well” again that stopped. My brother, a disabled Vietnam vet, lives with her, and he tried as best he could to help, but it wasn’t enough.

We tried various ways of keeping Mother at home, hiring a housekeeper who didn’t last long, paying grandchildren to help, but things weren’t done the way Mother wanted them to be, and her needs were greater than they could manage. We had big yelling, screaming “family meetings”about what to do, and every person had a different idea. Mother just wanted to stay at home, but after burning herself badly two times trying to cook for herself – she is a stubborn lady! – her doctor said she couldn’t stay in the house  virtually alone, and she couldn’t afford care 24/7. Her nurses and I tried to talk about the good things about assisted living – she’d get all her meals and snacks served to her, she’d make friends, she’d get to go on field trips, there wouldn’t be any more stressful family meetings … She tried to be enthusiastic, then she’d say “I don’t want to live with all those strangers, I just want to crawl under the bed and stay there …”In her weary eyes I see myself all those years ago, begging just to let me stay home.

Tomorrow I will drive to Dallas to help Mother gather up the last of the special things she wants to bring to her new home, and Saturday the furniture will be moved  and she’ll get settled in. I can’t help with the physical aspects of the move, but I’ll try to help with the emotional side. I think I’ll take her out for breakfast, and then maybe an outing to Walmart, so that she doesn’t have to watch her world being dismantled and reassembled. She said she would try not to cry when she walks out the door, but I told her to cry all she wants to, I certainly will.

For the first time, she’ll be able to have photos of both her husbands on her walls:  2nd Lt. Hulbert H. Robertson, her first love, who died in WWII:

2nd Lt. Hulbert H. Robertson, 1943

Gwen at her father's grave, Cambridge American Cemetery

And my father, Sterling L. Hornsby. They celebrated their 65th anniversary in October, 2009 at that old house.

Sterling L. and Velma Ruth Hornsby, Gwen Robertson

Jan. 2010 Velma Hornsby with her second folded flag

CPO Sterling L. Hornsby

DFW National Cemetery

Several generations of our family gathered on that front porch through the years:

The Scoggins family

Front porch Oct. 2009

Gwen, Shirley, Velma, Gary, Sterling L. Hornsby

65th anniversary Velma Ruth Stewart Robertson Hornsby

Great granddaughters Lindsey Wiggins, Megan Scoggins, and Maddie Mansfield; Great-great grandtwins Gage and Clare Wiggins

 

RIP David Thompson

There’s a hole in my heart today. That’s not a medical diagnosis–there is an empty spot inside me because on Monday, September 13, my friend David Thompson, as Kinky Friedman would put it, “stepped on a rainbow.” How did I meet David? I walked into a bookstore called Murder by the Book in Houston, somewhere around fifteen years ago, and there he was to greet me.  I love mysteries, read them, review them, attempt to write them, so I have spent a lot of time in that store, and through the years David became much more than a book seller to me, and to many other people all over the city, the country, and the world. He loved books, and it didn’t take him much time at all to know what each customer wanted, could make spot-on recommendations on what other books they might like – he never missed with any of the books he recommended to me. If he read a book by an unknown writer and liked it, he would often call and ask the writer to come to the store and do a signing-even if said writer lived in Brazil or Thailand.

MBTB has been my home away from home, my main source of a social life, the place where everybody knows my name … Carolyn Hart, one of the big names in mystery, had her first signing at the store, and one of her series features a book store based on MBTB. Lee Child, writer of the wonderful Jack Reacher thrillers, is long past the stage where he needs to do any touring to promote his books, but he makes a point of coming to the store with each new book. There are dozens, if not hundreds, of stories like that. The whole staff is wonderful, but David is the one who livened up the room and warmed the heart of everyone who ever met him.

A few years back, a lovely redhead named McKenna Jordan joined the staff. It took me awhile to figure out their relationship – David could get irritated and frustrated, and he often took it out on McKenna. She dished it right back. I figured they either hated each other or were in love. They were married in a Scottish castle two years ago.

My aunt told me what happened when my mother became a widow at age twenty-two. Her first husband died in WWII, leaving her with a little girl not quite two years old. When Mother got the dreaded yellow telegram, she walked home from the post office, handed it to her sister, and shut herself in her room. For two weeks she sat in a chair, not eating, not sleeping, not speaking. I know she is grieving for my father, who died last Christmas, but he was 89 and they’d spent 65 years together.

I’m editing this bit to explain why I mentioned my mother’s widowhood. The morning of my father’s funeral, her granddaughter asked her which was more difficult, to lose a husband so young, after just a few years of marriage, or to lose one after so many years together. Mother didn’t really have an answer – she said she’s always wondered what life would have been had her first husband lived to a ripe old age, but she knew she would miss Dad after so many years of marriage. I know what she felt in her heart, though. She did, and does, grieve for my father, but it is not the soul-shattering pain she felt so many years ago when that yellow telegram came.

McKenna and David should have had another 50 years to carry out all their plans and dreams. Life is not fair. We are not promised that it will be, but things like this are so very wrong and sad, and my heart breaks for all of David’s family, but most of all for McKenna.

I don’t know what else to say, so I’ll turn to my stash of quotes and poetry to end this post.

Lawrence Binyon wrote a poem called The Fallen for the British soldiers who gave their all in the Great War. I have adapted it slightly:

He shall not grow old

As those who are left grow old.

Age shall not weary him,

Nor the years condemn

At the going down of the sun

And in the morning

We will remember him

David Harkins wrote these words:

“You can shed tears that he is gone, or you can smile because he has lived…”

Dear David, I am both smiling and shedding tears. I hope there is a big bookstore in Heaven, where you can guide the other angels to books they will like, and maybe even send spiritual encouragement to writers on earth who might need a little help in writing their books. Here’s a hint – me :-)You can have long discussions with all the writers you’ve admired, those already there and those to come, and you will make Heaven a much brighter place to be. I will miss you always, and whenever I look at my Tigger doll, I will think of you.  All of us will do our best to support and comfort your beloved McKenna and your other loved ones, and we will shamelessly spoil Jack, who must be wondering where you are. Goodbye, my friend, you will be greatly missed. And that’s all I’ve got to say about that.

Or, my New Reality. The past year has brought many changes into my life, most of them not good. I finally got my doctor to listen to me explain that my swollen ankles and rapidly increasing shortness of breath were not just due to my being fat and lazy. Nope, I have a heart condition called dystolic dysfunction, meaning the blood is slow to fill up my heart and move on to the other chamber. Nothing too serious, apparently, she didn’t even refer me to a cardiologist, I did that on my own. He confirmed that diagnosis, but said he was more worried about my lung function. Off I went to a pulmonary specialist … after months of tests, drugs, one blot clot scare, I was told my “exercise-induced asthma” is really pulmonary hypertension, and when my symptoms didn’t improve with drugs and a C-Pap machine for the sleep apnea that MIGHT have led to this, he put me on oxygen. Here’s what ph is:  “Pulmonary hypertension is a type of high blood pressure that affects only the arteries in the lungs and the right side of your heart.”  It is not necessarily related to overall high blood pressure – my bp has always been low to normal.  “Pulmonary hypertension is a serious illness that becomes progressively worse and is sometimes fatal. Although pulmonary hypertension isn’t curable, treatments are available that can help lessen symptoms and improve your quality of life.”

That caused me to wonder “why me?” I have gained weight in the last 15 years, but most of my family are as large or larger. I exercised, until I couldn’t handle it any more, I never smoked, never did illegal drugs, have a fairly healthy diet, good blood pressure, but I’ve got a progressive health condition for which there is no cure except a lung transplant, and nobody else in my family has this. Why me? Why not me? Is it genetic, or does it have something to do with the miracle diet drug combination that was all the rage 15 years ago – until people starting have problems with enlarged hearts and other inconvenient side effects. I got checked, my heart was fine, no harm, no foul, and no weight lose.  When I began researching my health problems, guess what popped up in the adds for lawyers in the sidebar – yes, that drug combo is rearing its ugly head again. People who took the combo as long as 15 years ago have developed primary pulmonary hypertension, among other things. I have to try to get my doctor’s attention to find out if that’s the kind I have – and if it is, I might get a settlement from the drug company, but I might not live long enough to spend it. If my granddaughter happens to read this – DON’T WORRY! This is probably not the kind I have. My mother has similar issues and a lot of other health problems I don’t have, and she is 89. She feels like hell most of the time, but she’s still here, and at least her mind is sharp, even though her body is shot. My doctor assure me there are new drugs in the testing stage, new treatments, we’ve caught the problems fairly early, time is on my side.  But listen, I’ve had symptoms of both conditions for years, but when I told my doctors, they just blew me off. I was fat and out of shape but otherwise they found nothing wrong. Be your own advocate, you know your own body, insist on being taken seriously when you think there’s a problem.

It sucks to realize I may be disabled within the next decade, or maybe the next 2 years. My new reality is that I will have to lug a heavy oxygen bottle around when I “exert” myself – i.e. walk more than 5 minutes, do housecleaning,  go to the mall … Doctors can diagnosis these things, but as my friend Connie, who has COPD and a long history of dealing with the medical profession, tells me, they don’t tell you how to deal with what comes next. After I had a lung catherization that showed no blood clot after all, the nurse called me to tell me to “keep doing what you’ve been doing!” with a big smile in her voice. Doing what I’ve been doing hasn’t helped, the breathing problems just keep getting worse.  I’m trying to hope for the best but prepare for the worst, getting my affairs in order, trying not to let my mother know how serious my condition is becoming, learning how to navigate my world with a heavy oxygen bottle strapped over my shoulder, thinking it may be time to ask for a handicapped hang tag because I can’t walk up my stairs without gasping for breath.

My new reality – I had planned to travel after I retire in 2 years, but the rules and regulations involved in flying when you’re oxygen-dependent are mind-boggling. I have begun knocking items off my bucket list – I’ll probably never return to Thailand, never see Angor Wat, maybe soon I won’t be able to go to western Massachusetts for Arlo’s October concerts … Will I be around to see what my brilliant granddaughters become, will I be able to go to their weddings, hold their children? This sucks, did I mention that? Time will tell …

My other new reality – I’ve had my first Christmas as a fatherless child, the first Father’s Day with no one to send a card to, no one to call me his baby girl. I’ve had the first Memorial Day when I visited my dad and talked to a carved headstone. There’s a quote I think about by Mark Halliday in Keep this : “Everybody’s father dies  But when my father died, it was my father.” I can say now that my father died last Christmas Eve, and I can believe it and accept it, but when I remember how his last minutes on earth were spent choking and gasping for air because a medical “professional” gave an unconscious man who couldn’t swallow a dose of liquid medicine, well, that anger is still with me, as well as my anger over the lawyers who said we had no case because he was so old his life had no value, legally speaking.


I’ve learned that now that he’s gone, some members of the family are not treating Mother the way he treated her, with love and respect, taking care of her until his frail body gave out. Her last months, or weeks, or days are not peaceful, her very large extended family are not flocking around her, and I have tried to make things better but I’m too far away and it’s breaking my heart. Here is a woman who devoted her life to her family being ignored, neglected, or treated as a nuisance. How can that be?  Gotta stop now, my eyes are leaking …

Well, I think I’ll end this now. It’s taken me a long time to put the words on the screen. Isn’t there a quote about “misery shared is misery halved”? I feel better now.

Aug. 5, 2010. I’m feeling better today, physically and emotionally, and I’m ready to add the part where there’s Light at the End of the Tunnel, and It’s Not a Freight Train, Every Cloud has a Silver Lining, Into Every Life a Little Rain Must Fall … I was thinking of a song Pete Seeger, one of my personal heroes, wrote years ago about aging. Pete’s in his 90’s now and still going strong, BTW.  The chorus is

“How do I know my youth is all spent? My get up and go has got up and went.

But in spite of it all, I’m able to grin, when I think of the places my get up has been.”

I have been to far away places with strange-sounding names that most people only dream  about –  China, Siam (Thailand), the Philippines, Taiwan, Cambodia, Turkey, Peru, Nicaragua, Mexico, Guatemala, Honduras,  England, Scotland, Wales …and I almost forgot the Arlo Guthrie Blundering through the Alps tour that sent my life in a whole new direction – Germany, Switzerland, Austria, Italy …

Copper Canyon, Mexico

Shirley, Arlo & Annie in front of the Matterhorn

I have worked on archeological excavations in some of those places, even though I never finished that dissertation.

I had wonderful parents, and my dad lived to the ripe old age of 89, and my mother is 89 aiming for 90. I have known love, even if it wasn’t forever, and I have two sons I adore, and four granddaughters any grandmother would be proud to claim.

I’ve done some writing that got published, and even got praised. I’ve got a job I enjoy, and I’m not likely to lose it before I reach retirement age, and I have good health insurance. Way too many Americans don’t have that security these days.

I’ve followed a different path than I’d thought I would, way back in my youth, and it’s been interesting and exciting and sometimes strange, but rarely dull. I’ve met some wonderful people, some famous, most not, who have become great friends. You know who you are, and I want to tell you how much your support and love and strength has meant to me through the years, through the good times and the hard times, and I know you will be there for me in the unforeseeable future, come what may. I might have a lot of years left, there may be a miracle cure in somebody’s lab at this very minute, or maybe not.  Whatever happens, I’ll still be able to look back and grin, when I think of the places my get up has been.

Latest news from my friend Connie, who keeps up with this stuff:

DefaultPotential Treatment for Pulmonary Hypertension Discovered

ScienceDaily (Aug. 11, 2010) — Researchers in the Faculty of Medicine & Dentistry at the University of Alberta are one step closer to a treatment for pulmonary arterial hypertension, a potentially deadly disease.

Pulmonary arterial hypertension, which is high blood pressure in the lungs, currently has only a few treatment options, but most cases lead to premature death. It is caused by a cancer-like excessive growth of cells in the wall of the lung blood vessels. It causes the lumen, the path where blood travels, to constrict putting pressure on the right ventricle of the heart which eventually leads to heart failure.

Evangelos Michelakis, his graduate student Gopinath Sutendra and a group of collaborators have found that this excessive cell growth can be reversed by targeting the mitochondria of the cell, which control metabolism of the cell and initiate cell death.

By using dichloroacetate (DCA) or Trimetazidine (TMZ), mitochondria targeted drugs, the activity of the mitochondria increases which helps induce cell death and regresses pulmonary hypertension in an animal model, says Sutendra.

Current therapies only look at dilating the constricted vessels rather than regression, so this is a very exciting advancement for the lab.

“In the pulmonary hypertension field they’re really looking for new therapies to regress the disease, it might be the wave of the future,” said Sutendra. “The other thing that is really exciting is that TMZ and DCA have been used clinically in patients so it’s something that can be used right away in these patients.”

Clinical trials are expected to be the next step. Michelakis is currently working with a college in the United Kingdom to have patients with pulmonary hypertension take DCA.”