It is an epistolary story of a woman who suffered a catastrophic stroke following surgery to remove a cancerous brain tumor that would have killed her. The surgery saved her life but cruelly took away the ordinary life she had and replaced it with, well, keep reading.
Barbara befriended me when I first walked into the alto section of Church of Notre Dame near Columbia University. She is a big reason why I have had the pleasure of singing in polyphony workshops throughout Europe.
She was also the first intellectual Catholic I ever met. Not surprising, as she was the daughter of two prominent, Catholic, English philosophers: Elizabeth Anscombe "considered by some to be the greatest English philosopher of her generation" and the literary co-administer for Ludwig Wittgenstein, who was her good friend at the end of his life, and Peter Geach. It all added to Barbara's distinctive elan. Barbara was living in Texas when she had the stroke. Her parents brought her back to England after that to live out her life in nursing homes.
Barbara was paralyzed after the surgery, which was in 1992. She needed a trach tube to breath and feeding tubes for nourishment. She had lost the ability to speak, much of her hearing was gone, and her vision was damaged and would continue to degenerate. And yet, her mind was entirely intact.
Locked-In Syndrome and Literary Letters
I never heard the actual diagnosis "locked-in syndrome" but her situation amounted to a very similar condition. One difference was that Barbara could move her hand, which meant she could finger-spell letters into someone's hand to a communicate. Locked-in people generally can only move their eyes. And that is how the magazine Elle editor Jean-Dominique Bauby was able to write the stunning, haunting memoir, The Diving Bell and the Butterfly: A Memoir of Life in Death, detailing his experience. He blinked it. Letter. By. Letter. I highly recommend it.
Finger Spelling communication from the American Sign Language association.
This lead to the most rich, poignant, inspiring correspondence of my life. I'm sorry to say that it took me three years to actually start sending Barbara letters. I didn't know what to say to a dear friend who was suffering such catastrophic circumstances. Thank God I didn't let my initial slowness to act keep me from starting, a lesson I have applied elsewhere.
And since I wrote my first letter back in 1996, I have received a chestful of letters, including a birthday and a Christmas card, every year.
Barbara died on August 3, 2014, twenty-two years after the surgery. I know at least the last five years of which were in extreme physical distress, because I visited with her in England. The duration of her suffering is part of what makes her writing so extraordinary. For some context, the Elle editor only lived eighteen months in his "diving bell body with the butterfly mind." Not 22 years.
I offer excerpts from Barbara's letters to me because I want to share her spirit, wit, faith, philosophy, and ability to love and care for her friends from the confines of her bed, in hellish circumstances. Her concern about my own frequent, romantic heartaches is particularly poignant. I want Barbara to live on in everyone who reads this little blog as an example of the staggering courage of her life.
Do you know your purple dress is what the French call demi-deuil?
Right now God is asking me to take a lot, but, I keep saying to myself, this can’t last. I look forward to it being over, and maybe to take my place in the back row of the altos. Please give everyone my love and keep lots for yourself.
I was surprised that you polished your nails blue. I’m sure it’s very modern, but I liked ‘Fire and Ice.’ It was bright red.
I’m afraid I’m jaundiced about John John [Kennedy's] wedding, but not so much I didn’t wonder where it happened and who he married.
I never watch TV because I can't hear or see much. I did read Vile Bodies. I agree Evelyn Waugh is interesting, but I understand a bit of a bastard. He said he'd be even worse if he weren't a Catholic. What a guy!
I have my computer back again but my tinnitus and cold are so bad that I haven't worked on it in a while. I'm really cowardly about my ataxia too. It's silly because if my number is up it's up. I do have these fears and I'm terrified to work alone. As it is I think people are more impressed than they should be by it [a computer]. It is just an aid to writing and arithmetic, after all. People act like it will solve all problems. It won't. Our Lord is the only one who'll do that.
I am learning to lip-read. You see I rather like learning new things.
Teaching me is a race against time anyway, because I'm going blind slowly but surely.
I'm supposed to have a new trach because my current one is too small. I will have to have plastic surgery because my stoma has closed up and got too small, but when God knows.
2/23/1997 [Five years since the surgery]
What a hoot seeing the wreck I am now! I wouldn't have aged gracefully so maybe it's as well I won't have a chance.
How the hell do I convince the bureaucracy that I need a new trach that fits. And how do I cope in the mean time? How do I manage increasing deafness and blindness?
I voted ‘cos I think the franchise is important, and I may be disabled but I don’t want to lose the vote as well as everything else.
I will face new problems 'cos I think Labour won't want us cripples. I bet they want us just to kill ourselves. Well, we are willing to support abortion, and why not pick on somebody else that's defenseless? I don't mind dying, but not 'cos they say so.
I am very depressed and quite willing to die. I was told this was selfish and selfpitying, but five years is a long time and I spend time thinking what good I’ve done, and I think the world would be a better place without me. Of course I may be useful in the future, but I’ve lost my powers, to say the least, and feel I can go. I wonder if you know how galling it is to be me? They want me to take antidepressants, but the happy pill doesn’t exist which can make up for all my losses. Anyhow, they make me stupid, and I need what little intelligence I have left.
Well done for moving to a one bedroom apartment. Seriously, have you any needs? I am an old apartment dweller from way back, and remember being quite pleased with house gifts, so don’t hesitate to ask if you need something.
[When I misquoted Browning !]
My brother, who comes nearly every day, says I should phrase this differently, but I’m shameless and haven’t changed it. You misquoted “Oh! To be in England!” It’s Browning and one of my brothers gave it to me for Christmas so I’m sure. My sister takes a dim view of Browning, but I rather like him.
You don’t say anything about your love. I had a moment’s hope that he’d gone away.
I hope I do cheer you up. ‘cos frankly you worry me. Marriage ain’t all it’s cracked up to be. Just think, you could end up like me. A junked wife is a junked wife, and believe me, dumping isn’t any fun for the dumpee.
Did you know I was a State Scholar? It’s all meaningless now of course, but I thought I was the cat’s pajamas at the time. I’m glad you are rereading Lord Peter Whimsey. I like whodunits myself. Lately I’ve been on a jag with Margery Allingham. She isn’t quite as literary as Sayers, but she is a good read.
I was pleased that your brother got a new job. I rather narcissistically attribute it to my prayers.
In our language it would be o.t.t. if we had to worship the Virgin, which many Protestants think we do. Calling her co-redemptorix is surely just a way of formalizing her status, but I believe that expression has been specifically condemned so fuck Newsweek. Christ died for us and great as she is Our Lady didn't.
I am struck over and over again by how boring life is. Of course it is for me, but I mean generally. I think people sin 'cos they are bored, though of course sin is pretty dull. Actually virtue is much more interesting, but people won't know that. Their minds are darkened by the devil.
I don't think we celebrate St. Patrick's day much because it's an Irish feast. Did you drink green beer? Did you have real shamrocks? I hear it is a big religious deal but not as big as the feast of St. Joseph that occurs two days later.
One of the priests in the Dominican community here says it is a providential thing that St. Patrick's day never falls in Holy Week 'cos otherwise the Irish would forget about celebrating Easter! I might be English but I do honor him. I think people often forget about the doctrine of the Trinity or take it for granted. I know St. Patrick's Breastplate so I have no excuse.
You'd think I'd care but in fact I often allow worldly concerns to drive it right out of my head. I suppose I'm like others in that way.
Sorry for the delay in answering your letter which I did like. I went to Lourdes in the time since I last wrote.
Now I have one eye sewn shut I guess I'm not attractive and am perhaps frightening. But my niece copes and says I don't scare her. [Note: The Elle editor JB Dauby had the same thing happen. He explained that when the lid ceases to function to close and keep the eye clean there is danger of cornea burn, so the doctors sew the lid shut to prevent that.]
The memory banks got stirred up when you spoke of what you were singing. I recall singing Palestrina's Missa Brevis with you in Brooklyn. Come to think of it we never had a crash in over two years.
You'd soon stop writing if I complained so I don't on the whole, but since you ask about my tinnitus I must tell you it is so loud now that I can't hear much else.
This is a good home and I'm glad I'm here. I have been in some bad nursing homes, and this isn't. Of course nothing in this life is perfect but I am much loved here, which I know doesn't always happen. I have a nurse and an aid interested in me and if I didn't have so many problems life would be perfect. But hey, who has a problem-free life?
I'm sad at the moment 'cos a resident is leaving and I want to leave and can't. On the bright side I am hearing more in my left ear and the machines are even detecting some hearing in my right ear. The trouble is I depend on my vision a lot and it is slowly going.
I'm not at all offended by your participating in a Schola at St. Barts. Just don't become an Episcopalian!
You must think I fell off the edge of the earth.
I rather liked thinking of you in the Dordogne. You said you had seen the place where Poulenc wrote the Black Madonna Vespers. I remember those very well, though I have to sing them in my head, as I do for many things.
I'm sending you a note to tide you over 'til I can write properly. The letters keep on piling up and I'm very glad to get them. Also I'm glad to hear your news and I really mean it 'cos I'm very cut
off, as if I went to prison. Given all my sins that wouldn't be too surprising.
[Amidst a letter of extreme sorrow and sadness within her family . . .]
Today I had clothes put on me that I chose. You'd think this wouldn't matter. It does.
Are you still the pretty blonde I recall? As far as I can tell my mind is OK but my body is a mess. Specifically my time sense is off.
I did hear about the World Trade Center by the way. We are remote but somebody showed me newspaper pics of the plane in the second case. Also another friend wrote from Brooklyn that the stench was noticeable for months and the wind blew burned letters into people's backyards for a while, so I guess these events will not be forgotten.
5/24/2003 [I love this extremely poetic thought]
I'm glad you had a good time in Italy and enjoyed singing in Spain. Now you have planned your summer. Where will it take you this time? I'm quite tied down but I love hearing about other people's travels. I gather this was common in Soviet countries when people weren't free in body and their minds roamed.
I must stop 'cos it is late, but I think of you often.
I recall you said my letters meant a lot to you. I feel pretty futile so I was touched. I have to go, but am I nuts? Help!
Thank you for the card. Amalfi is quite beautiful and I envied you your trip. I was especially taken by the bougainvillas. A priest came to see me today and gave me a tract about Marthe Robin. I'm not very like her. For openers she was a peasant and I'm middle class.
[Marthe became bedridden when she was 21 years old, and remained so until her death 60 years later.]
How are YOU doing? I'm worried about you saying you are depressed. My reaction was to say "Bloody men!" Don't let the bastards get you down. I must go now, but you have my prayers.
p.s. I now have e-mail fully, and a busy person like you may find my address useful.
[I broke my ankle running for a subway]
I’m very sorry your foot is being so slow. I hope the rest of you is ok and you have lots of books to while away the time. It’s a drag but later you may see the reason.
Your recent email about your trip to Chicago reminded me that I never answered your last one. Most remiss. Mea culpa. I read a few articles by Peter Phillips in the Spectator and assumed wrongly that some hack had written them. I think there was something about the Tallis Singers as well. I didn’t pay much attention. I was able to read then, and skimmed through a lot of things.
If you can manage a Sunday visit that would be very nice. I see nothing wrong with Sunday July 12th. I often get no visitors on Sunday so the day yawns like a chasm. As I recall, you do not know alphabetic sign. It’s not hard and there is a one for one match with ordinary English letters. I never went further than finger spelling. So if you can pick up a bit before you come that will be a big help.
7/13/2009 AFTER MY VISIT
I dunno when you will get this but I did want to thank you for your visit. The signing was probably too fast for you. I am forced to use gaps in communication like the phone company does. It is very hard to follow my sign and it’s my fault not yours I fear. I go fast cos people get so cross with me when I go slow, but they can’t follow me when I am fast, so I can’t win. To make things worse, I have developed a stammer in my signing. This doesn’t help.
[Note: Barbara asked her nurses to bring me tea, and she was all dressed for my visit, with a lovely purple sweater and very tasteful makeup. Such hospitality in the midst of enormous suffering.]
I'm moving. The name of the home is ironic cos I feel really desperate. I do not enjoy it when nobody can talk alphabetic sign. It’s what I use to communicate, but not everyone has good friends like you. This makes up for a lot. I hope to hear from some of you soon. All the emails are a lifesaver. Be well.
I know what you mean about the Russian language. Years ago I learned a little Russian cos when I was a schoolgirl invasion seemed inevitable. As you know, it didn’t happen, but I still have a few words and I once freaked out a Latvian carer by thanking her in Russian. I believe Stalin didn’t allow Latvian to be taught. A whole generation of Latvians don’t know their own language. This is what conquest is like.
I want to be sure to wish you a very happy Christmas. I dunno if you will join your mother in her condominium? I’m finding Christmas cards a struggle. The constant weariness I feel is taking its toll. It also makes my letters shorter than I would like and now I must stop.
I had an old Irish woman as a patient who paid me a great compliment. She said my friends must be all Irish. Then and now this is not true, but I do have you of course. I used to own a disc called The Clancy Brothers and Tommy Makem. Goodness knows where it is now. I wonder if it’s the same Clancy Brothers as the ones you mention. Of course the name Clancy is quite common in Ireland. Do you think they need and extra voice? I was once told by a woman outside a store named Clancy that I had saved her from going to The Grange. This was the local loony bin. It was a lovely moment which I cherish. I have to go now but I hope you are well.
I wonder how you are doing? One thinks one knows a person but you may be doing something new and my former ideas are silly. My brother takes me to Mass here in the chapel every Sunday. The poor man can’t speak to me so he simply rubs my hands a bit. Otherwise my Sundays would be very dull and they are often bad anyway. I keep hoping for some breakthrough that will change my life. As Auden says, this is the way the world ends, not with a bang but a whimper.
I use these times to find out how badly I am doing. There is a big black cross on the wall and this time it was a little fuzzy for the first time. People come up and shake my hand at the Kiss of Peace I often don’t know who it was. The chaplain is a nun called Sister Margaret. She always squeezes my hand so I know it’s her. Touch becomes very important when you are nearly blind. In the summer months maybe there is no singing but are you going away? Do tell me where to. Now I must run.
I do not think there will be a breakthrough for me, but I always was a pessimist. I hope you had a good time in Italy and that your birthday is very nice. I'm the same as ever, only weaker, which is very annoying. When I get to heaven I will shout at God like Saint Teresa of Avila. I think I might have been her friend. Be well. Many happy returns.
Lovely to hear from you. I can remember picking an apartment cos its bathtub had claw feet. I think bathroom fittings are very much a matter of fashion, and it was surprising that you found a tub like that. You said your niece went skydiving. I should also have been impressed. I haven’t the nerve for that. What it is to be young!
I meant to ask you if there were a clan system in Ireland as there is in Scotland. If so, I wanted to know if there were an O’Neill clan. I have a dim memory of being told that some one who asked where the head of the table was being told, “Where the O’Neill sits is the head of the table!”
You asked me how I felt about the monarchy. It is rather complicated cos I don’t approve of the current house. At the same time I was very pleased to hear from you that the [Irish] State Visit had gone so well. I don’t think I am a monarchist but one has to open buildings and name ships. On the whole I am against them cos I don’t think kings are very good for nations. Human beings are odd cos we are not very happy with no king as in the USA. I think many presidents secretly think they are monarchs. Being a republic does not seem any protection. Some of them have been pretty bad. Remember Nixon. I think people were glad when he fell. I hope you are well.
I have never been to Portugal so I was very pleased to get your email. Actually you rang several bells. About Portugal I thought you would be amused to hear there was a bureaucratic directive in World War Two which said it is strictly forbidden to call our gallant allies the Portuguese the “pork-and-beans”. Somebody with no sense of humour wrote that. I have a vague idea that the people of Portugal are great sailors and that they found a lot of the known world.
Have you ever read poems by a woman called Moira O’Neill? I ask cos I was trying to find a student by that name. It turns out that there are a few women named for this poet, but I had never heard of her let alone read her. There are probably lots of O’Neills.
[I sent B. opening lines to O'Neill's poem "Beauty's a Flower"
Youth's for an hour,
Beauty's a flower,
But love is the jewel that wins the world.]
Mainly I want to say Merry Christmas. We say Happy Christmas. It’s a small shibboleth. I try to remember to talk American. I have not heard either piece you mention; so do say how you liked them. As it happens, I have read a few poems by Wilfred Owen, but I did not know he was set in the requiem. I do think WWI was a terrible waste of young men. I gather WWII was a bit less wasteful.
A while ago you said you had enjoyed some P.D. James stories. I have been meaning to tell you I like her too. I specially like her detective, named Adam Dalgliesh. I enjoyed the fact that he was a poet as well as a cop. Did you read the one set in Sussex marshes? I liked the idea of a house that was somehow set apart. Of course he does order a criminal shot in that one, but I don’t think he has a choice. I also read The Dark Tower. I don’t think Dalgliesh is in that one. I think he does improve a story. I am not sure why. Anyhow I wanted to say I had asked my friend in Canada if she had ever heard of Moira O’Neill. She hadn’t. So much for fame! I have to stop but I hope you have a very nice St Patrick’s Day. Do you have something lined up for that day?
I have thought some more about what you wrote about the poet Moira O’Neill. I dunno if it still exists, but there used to be a publishing house that specialized in the works of women. The place was called “Virago”. I think the stuff you have sent by her is quite good and if it is typical of her, she maybe should be read by others. Think what a gas it would be if an O’Neill got her republished in a special new edition!
I am very blind now and I can’t read my own emails, which is a big drag. I haven’t been able to read anybody for months, so the days are long. I hope you are well.
I had hoped to write to you before Easter, but that was vain and so I do now what I intended then and wish you a very happy Easter period. You have been out of touch for a few months and I wondered if you were busy or if I had lost you. I do notice when I stop hearing from a friend.
I had made up my mind you were in the midst of various labours with Virago Press getting Moira O’Neill, better known in the present. It can take lots of time to work with publishers. I didn’t have nearly such an important job as you and I still found that.
I guess you all know there has been a delay. I went far too blind to read even my own emails a year ago. I thought this was just temporary so I did not say much about it. You have gone on sending fairly long emails and they have mounded up. So I thought you deserved to know I am still around and not dead yet. To make matters harder I have great trouble in processing information and any speech and I seem to have developed a stammer. So it is very hard to reach me. My brother has been slogging away and he has coped with my emails. All I can say is thank heaven for his assistance. I send you all my best wishes.
I believe you sent a line or two of poems by Moira O’Neill. I want to thank you for one in particular. It said, “Love is the jewel that wins the world”. I say it over and over to myself and find it very nourishing. Maybe you could use a bit of that nourishment right now, cos I have not heard a peep from you in a little while. So what ‘s the story? I believe in my last I asked about your nephew particularly, since I have one too, and I gather that Tom is having a bad time with college. Gosh, it does seem to be hard to get over this first hurdle and start on one’s life. I don’t remember it was so bad for me. Getting old is another matter.
That was the last letter, a month before she died.
I have never prayed for this sentiment more deeply: Rest in peace, Barbara.
Updated for Christmas 2014: Along with an annual birthday card, Barbara sent Christmas cards to her friends every year. So this is the first year of no Christmas card coming from Norwich, England. I did get a card from one of my dear blog friends, Lance Mannion. It is of a rural winter scene, with a black bird sitting amid the snow on a wooden fence. When I turned it over, the name of the painting is "The Magpie" by no less a painter than Claude Monet. Honest to God, Magpie was Barbara's nickname for me, because I like shiny things. What are the odds? Lump in throat, tear in eye . . .