Memories

Taken sometime between 1978 and 1986.

Dear Ed, We have joked and laughed together many times but this is a time to be sad together. Great operas show how sadness and grieving are a basic, elemental uttering of the human spirit---but they never capture, for all their art, how life really is when someone so dear passes away. Barbara was such a joy to know and be with during the many summers at Woods Hole (and elsewhere). Lin and I are with you and yours in spirit and with utmost sympathy during this sad time. Laughter will return from time to time, but now mixed with fond memories. Barbara would want it so.
                                                                         Jack Whitehad

Jack and I are sincerely saddened by Barbara’s passing and will always remember many happy hours in her company! She had such a wonderful, positive, joy-filled spirit, that it was infectious! One of the things I will always remember is the time she phoned and asked if I could recommend a voice teacher. Barbara wanted to audition for a very select choral group in NYC. What a special person to undertake a new endeavor such as this and with such motivation and enthusiasm, I thought! How many of us at her age (though Barbara was always young) attempt such a new challenge? Of course, she did take the lessons, was accepted into the choir, and even sang at Carnegie Hall. We will miss her so much and we extend our sincere sympathy to Ed, Mimi, and to all who loved her.
                                                                      Lin Whitehead

Dear Ed, I am deeply saddened by the news of the passing of Barbara. She was a remarkable person and I have fond memories of all those evenings we spend together at your house in Woods Hole. I am so glad that my wife and my son actually got to know her on our last visit. Several years ago my mother passed away from cancer. I was present during her last days, so I have some real sense of what you and Barbara and everyone close to her had to go through in the last few months. Perhaps words are of no help here, but nevertheless, please accept our heartfelt condolences for the light that has gone out in your life.
                                                                      Sandip Ghosal

[click to download the original] [more pictures here]

The 2008 end-of-program picnic @ Casa Veronis (by Paula)
                                                                      Charley and Paula Barbara kept track of all of our lives: our birthdays (here she has recorded one of her interminable and grammatically perfectly well formed voice mails for me, in spite of being so techno-logically retarded) and our anniversaries. She also used to write us real, 19th century handwritten letters, on nice stationary and with cute high-culture postal stamps. We love you, even though we cannot return the call.
                                                                      Predrag

Barbara was a wonderful friend and deeply musical. We'll miss her so much. And, dear Ed, thank you too for everything.
                                                                      Ruth and Michael McIntyre

We are so sorry for your loss Ed. She was an amazing woman, and a graceful, funny, beautiful friend. Since we heard the news, Stacey and I have been talking and reminiscing about all the wonderful times we spent with Barbara: stumbling home at 3am in the morning, having finally escaped the Spiegels' merciless hospitality; Barbara's endless restaurant recommendations (always excellent); hearing Barbara sing the Messiah with her choir at Carnegie Hall; Barbara and her friends taking yoga classes from Stacey; visiting the two of you at the rehabilitation center, always greeted by Barbara's sweet smile and twinkling eyes and unstoppable sense of humor; and, above all, constantly admiring the love and affection that you both displayed so shamelessly. All of these things are irreplaceable. We miss her terribly, but we are so grateful to have known her. Much love,
                                                                      Shane and Stacey Keating

Dear Ed and Mimi, John and I are so very sad to hear that Barbara has left us. When I last saw her, on February 4, I could see she was in a steep decline but the finality of her departure is still a shock. She was a wonderful, generous person, always ready to listen and help. She made us feel welcome to New York after we moved here 15 years ago and Holly introduced us. She invited me to join her book group and introduced me to a wonderful member of the Oratorio Society who lived in my neighborhood. I shall miss her easy conversation as a lunch partner. Our deepest sympathy to you both                                                                       John and Mary Brown

[click to download the original]
[more pictures here]

As Ed wrote, a light has gone out, but we can always feel the warmth and clarity of the afterglow. Here is the only picture that I ever took of Barbara that she even slightly approved of: September 2005, Little Sippewisset Salt Marsh.
                                                                      Holly Pedlosky

I'm so sorry, Ed. It's been years and years, I know, since we've seen you, but Barbara and I kept up by mail. She was without a doubt a wonderfully special woman.
                                                                      Lydia Theys

My family feels blessed I brought Barbara into their lives and love her. Barbara and i started a friendship when we were seven years old. She continued to be a joy in my life. My family is supporting me in my grief and understand Barbara's death has left a big hole for me.
                                                                      Angela Tiley

Mon cher Ed, Je viens d'apprendre la nouvelle et ressens une très grande peine. Barbara était capable d'éclairer la vie de ceux qu'elle croisait. A la fois superbe, touchante et généreuse. Elle était tout en joie, en ingénuité et en finesse. Quelle plaisir c'était pour moi de venir diner chez vous à La Guardia place et d'être toujours magnifiquement reçu, ou bien de l'entendre chanter à Carnegie Hall puis d'aller au Burger Joint comme des écoliers en goguette. La grâce des moments simples. Elle va nous manquer mais sa flamme nous éclairera toujours pour nous montrer le chemin. Je pense fort à toi
                                                                      Denis Gueyffier

Her light illuminated many lives, and made all of them richer.
There are no words to describe how much we will miss her. Love
                                                                      Sara Solla

My deepest condolences to Ed for the passing of this incredible and unique woman. I remain, as always, his close friend, and wish him that he finds somehow enough strength to cope with this tragedy. Deepest condolences to Mimi and Philip for their terrible loss.
                                                                      Oded Regev

Cher Ed, Nous aimerions être à côté de toi, pour te dire combien nous aimions Barbara, son sourire, ses réparties malicieuses, son écoute permanente - toujours prête à rendre service. Nous perdons une amie très chère. Elle nous manquera terriblement. Nous te souhaitons de trouver la force pour surmonter cette épreuve. Nous t'embrassons affectueusement.
                                                                      Jean-Paul et Suzy Zahn

Dear Ed, What terrible news. Our hearts and thoughts go out to you, who have cared so patiently and so long for Barbara and loved her even longer -- since that first meeting, after noon, for breakfast.
She was a truly remarkable woman, who was much loved and admired by all who came across her. She definitely made the world a much better place and greatly influenced all who came in contact with her. I so remember our first meeting, in 1972. I had been at the Summer School for the first time, and, after eight weeks or so, felt that I knew all about how Walsh Cottage ran and who came to seminars and the like. One afternoon, a woman walked in and all hell broke loose. Everyone was so pleased to see her, and the man she came with. I guessed that this must be the fabled Spiegels; and I was right. And so was the commotion. She amazed me then with her warmth and friendliness; and continued always to do so, whether in our house, telling about making Hollandaise sauce by the bucketful, soothing, yet understanding my terrible, luckily now ex- , brother-in-law, staying in Cambridge, singing in the choir, accommodating both Julian and I, so many years ago, in New York; and on and on. She made our lives much more interesting and enjoyable. It is sad to think that your wonderful statement: tell to me in a way I can repeat it to Barbara will no longer be operable. But we will all remember her and her wonderful ways to the end of our days. We join in sending you and Mimi our sincerest sympathies in this terrible time. Much love.
                                                                      Felicia and Herbert Huppert

From La Guardia Place

Dear all,
I've stayed with Ed tonight. (I just happened to be visiting for one day, yesterday, of all days.) He says he has slept very poorly in the last months but appears to be sleeping now.
Let me recap the last couple of days. Monday morning I arrived in NYC and went directly to stay with friends on the upper-west side. Tuesday morning a bit after 9:30 I arrived at the hospice. Ed was there with an aide, Shelley. He had just spent the whole night there: they had woken him from his place at midnight to tell him that B's breathing had changed. Indeed, B was wearing an oxygen mask and her breathing was very labored. Her eyes were usually slightly opened, but there was no ocular response or indeed any sign that she was aware of her surroundings. She looked very shrunken from the loss of muscle mass.
Ed kept waiting for the doctor, whom several people had said would come by at various times, to ask about the oxygen mask and mottling of B's skin. At about 11:30 Mimi (who had arrived in the meantime) and I encouraged Ed to go home to get some sleep. We told him we would get him if something changed. He left and Steve Childress arrived. As the three of us were talking, suddenly Steve and Mimi noticed that her breathing had slowed dramatically, to a whisper. After conferring we decided to call back Ed.
I was difficult to tell exactly when she died. The breathing just became more and more subtle and eventually we just had to admit that she was dead. The saddest thing was that Ed didn't quite make it back in time -- I feel terrible for insisting he go home and get some rest. But on the other hand B was clearly completely unaware of her surroundings.
The rest of the day was a scramble for funeral arrangements (Steve took care of that). Mike Shelley and Jun Yin came over. We waited for the people to come and collect the body around 3:30. By that time only Ed and I were left. We took a taxi back to La Guardia Place because we had bags of B's clothes to carry. We then had a pastis and chatted for a while. Around six we went out to eat Japanese food nearby, with Mike. I'm happy to report that the discussion was the usual academic gossip. Ed of course is devastated but has enough energy and drive to talk science, as well as to complain about this blog. He stayed up part of the evening answering every condolence letter individually.
Ah, I hear him: he is up now!
All the best,
Jean-Luc

Barbara left us at 12:35 on Tuesday 2/15

The light of my life has gone out
but the afterglow illuminates my darkness.

Quick changes, Not going home

Just got an update. B is in a state that make is it impossible to move her. She is staying where she is. That is, they are not going home. Updates when possible. Andreas

Going home

Tomorrow morning they are going home to Laguardia place. There is a person that will live with them and take care of B. My wife will help out two times a week. I am also under the impression that B is not in a very good shape. Will update when I know more. Andreas

Barbara is not doing well

Our understanding from Ed and Mimi is that Barbara has been getting steadily weaker - her breathing has changed, her pulse is elevated, she is not opening her eyes or eating. There no signs from Barbara at all that she knows what is happening. Ed was hoping to move her home, but she is in a state that makes it impossible to move her. She is staying where she is. Ed is by her side and has not slept much if at all. Do not know what one can do to help them right now, but Jean-Luc 608 287 6419 is visiting today, and Andreas  917-348-1018 is keeping track, they will know better.

Predrag and Andreas

       [a link on breathing difficulties]

Sara & Predrag visiting Feb 24 - 28

We will visit Barbara and Ed, arrive evening Thu Feb 24, leave afternoon of Monday Feb 28.

Predrag  404 487 8469
Sara       212 460 5896

A Bad Patch

When I last reported on Barbara's condition, I was guardedly optimistic because her walking and talking had noticeably improved. It is true though, that I did not mention that she was still plagued by an intense fatigue that kept her sleeping throughout much of the day. That feature of her condition has worsened since mid-January. (I write this on Feb. 3-4 between episodes of various sorts.) Even worse is that Barbara can no longer stand up on her own, let alone walk. And she is very uncommunicative. This may cause me to give up on or postpone the project of moving her home that has been our goal for some time. But, so far, I am still trying to keep moving in that direction with enormous help from Mike S. Also Alan W. has now begun to lend some assistance, especially in peripheral legal matters.

Today we were told that Barbara could no longer have physical therapy because the medicare coverage has run out. Moreover there is no mechanism that would allow me to pay for this myself. And today, we could not rouse her for speech therapy. Her smiles, which kept the spirits of everyone who saw her uplifted have become infrequent and visitors are coming less often.

The difficulty of her not being able to stand led to her having a fall while she was being changed into her nightgown a few nights ago. The fault apparently was the inexperience of the caregiver who should have known that Barbara should have been seated for this operation. The experience was made worse by the uncontrolled behavior of the caregiver after the fall. Since Barbara's decline had begun before the accident, who knows what its contribution was. I share some of the fault since I should have realized that the person in question was not sufficiently experienced in these matters of caregiving and I should have controlled her better in the aftermath. She was a replacement for someone else who seemed even less in touch with reality. I had prepared my case for an improvement in the caregiving on that day but the person in charge did not show up and I had no way to present my case.

Another decision I have had to take is that, despite my misgivings about the demeanor of our oncologist, I have concluded that Barbara needs medical attention at that level. As he knows her case best, I have made an appointment to have an MRI and an evaluation by this oncologist on Feb. 8. But I think there may be other medical issues.

Barbara has been having breathing problems. Is this connected to the tumor? I have been trying to catch one of the two visiting doctors to ask for an opinion. But they are rapidly moving targets. There is a swelling around her throat. Is that goiter? Her hands and feet have been twitching and I was worried that this might be a form of mini-seizure. Certainly the amplitudes of these motions went down this morning after Barbara had her anti-seizure medication. Barbara now sleeps fairly continuously, opening her eyes occasionally but not speaking.

As I mentioned in a previous note, I was planning to contact Dr. Grewall of Great Neck at the suggestion of Dr. Hsu, Louis T.'s high school classmate whose advice has been invaluable. It turns out that Dr. Hsu had asked Dr. Grewall to contact me. Our letters crossed but we finally made phone contact. Dr. Grewall is in favor of trying Avastin, a drug that inhibits the formation of blood vessels that feed tumors. In the present circumstances, I feel this approach is worth considering. But 1.5 hours of travel each way for treatment is too much to submit Barbara to. So Dr. Grewall recommended Dr. Pannullo at Cornell Medical Center and I have written her. There has been no response, so I will try to reach her by phone. As we enter the weekend, there is great uncertainty about our situation.

The Barbara of January has left us for now and who knows if we shall see her again. But, as the bard wrote, "Love is not love that alters when it alteration finds."