ArynneSimonSays’ blog

March 30
March 21^st, several days ago, was gloriously the first day of spring, and, miserably, the one year anniversary of Arynne’s stroke. Life sometimes deals us a Queen and a Two in the same hand; any Texas Hold ‘Em player will tell you Q-2 can be a trap for your emotions.

I look back over the year and recognize that Arynne has lost some of the limited abilities she had in the weeks following the stroke. It’s too painful to write down the list here but she has not drawn a portrait in months, not even picked up a pencil. She used to type random letters on her Macintosh, and work on a language program but earlier this month showed me she wanted to have me take her computer out of her room. She will go out to meals with me and enjoy herself, but won’t go for a walk or do anything that hints at being exercise. And that’s only a few of the items.

On the other hand, she is mysteriously saying a few more sentences that are understandable, like asking me the other day, “How are you doing?” followed by “I feel pretty well.” From such small things do we now take pleasure.

Delia Halpern, the mother of Victoria’s first boyfriend, has long been a close friend of Victoria’s and a fan of Arynne’s, and a favorite of mine, as well. She came through town on her way back to London, returning from three weeks in Australia. She knew all about Arynne’s condition but cried nonetheless. These visits from old friends are so important for keeping up Arynne’s sense of contact with the wider world.

Today our housekeeper of thirty years, Josie Rodriguez, came up from San Diego with her daughter Julie. Though Arynne was sleepy — as she is so much of the time these days — she kept taking Josie’s hand, and patting her, and smiling at her. Josie and Julie stayed for the better part of an hour, and Arynne roused herself after a while, becoming more alert to enjoy the visit. They have promised to try to make it up more often.

And there is a message here for everyone who can make it to Los Angeles: visits are a wonderful tonic, all are welcome. Diana Malk came up from San Diego just recently — a one-time Rancho Santa Fe resident who attended St. Christopher’s in Letchworth, Hertfordshire, following Victoria there. And Bettina Michaels, who used to go to the races with us at Del Mar every summer, came by, as well.

To end on a smile — I took Arynne to lunch a few days ago, to a favorite restaurant of ours, Buddha’s Belly. We each ordered an appetizer instead of a full meal. Mine was enough to satisfy me, but Arynne, after finishing hers, gestured that she wanted the same thing over again. I ordered another round for her; she shared a little with me but otherwise happily finished the second plate of shrimp-stuffed dumplings. So her appetite is holding up nicely. (Victoria tells me that Arynne’s trousers are getting tight … even though Arynne starting turning down the candy and cookies I used to bring, and I stopped. But she is continuing to enjoy Victoria’s offerings of a donut on each visit.)

Again, a reminder to all that the door is open to visitors.

        Best,
        Bill

I have to get used to the idea that I’m a passenger on a roller coaster. And roller-coaster riders, as you know, are just along for the ride, with no expectations that they will be able to control any aspect.

The first week or so after Arynne’s return from the hospital following her outbreak, she was subdued, mostly asleep all day, often in bed except for mealtimes.

Then came a happy period when she was, entirely unexpectedly, alert all day. Whatever time of day I arrived, I’d find her in the front sitting room, awake, glad to see me. Chris Walker Steep, another friend from all those years ago at Apple, flew down from Seattle (she and husband Mike are now with Microsoft) to spend a weekend visiting; Arynne is almost always energized by visits from old friends, and having Chris’s company was obviously a special treat.

Last Tuesday I asked Arynne if she’d like to visit the brand-new contemporary arts building of the Los Angeles County Museum of Art with me, and have dinner together afterward. She said yes. But did she really understand?

As in the past, when I arrived on Wednesday Arynne was all dressed and waiting for me. Off we went, and we had a grand time together. In front of one painting, she asked, “Do you like this?” And then pronounced it “Wonderful.”

Wonderful—exactly. it’s hard for anyone to understand how wonderful it can be for someone like me to hear a single word like that. “Wonderful.” It’s testimony that she was not only truly finding joy in some of the paintings but was managing to express it. For the rest of the world, such a small, transitory moment. For me, something memorable, and worth writing about here.

In such tiny ways I measure my pleasures with Arynne these days.

About the roller coaster: as suddenly as it started, the-sitting-up-all-day period has just as suddenly ended. For the past two days, she has been back to the groggy state, back to being in bed except for meals. And yet, she has been unusually affectionate, today repeatedly pulling me to her for a hug, obviously enjoying my company, directing where she wanted me to position the pot of flowers I had brought, chattering away until the grogginess overtook her once again and she gave me an end-of-meeting “Goodbye.”

So off I went.

That’s the thing about the roller coaster. The train climbs the tracks and we’re scared because we know from experience what’s shortly going to happen. It reaches the peak and starts down; we’re exhilarated yet beside ourselves with fear because the sensations are so unnatural and threatening. And then the train starts climbing again, this time on a different section of track, and we know the experience will be a repetition, yet not the same, never exactly the same.

Welcome to the carnival of life.

        Bill

I write this at the end of a very, very tough week that narrowly skirted an unhappy ending, though the outcome, after all, is: back to more of the same.

As followers of this blog will know, we had been enjoying a month of more of Arynne on reduced medications, making her less groggy and passive in the afternoons, more alert and better able to enjoy my visits and the visits of friends.

But there were consequences. The experiment, it turned out, was only temporarily successful. The reduction in the anxiety and depression medications led, this past Tuesday, to another of those heartbreaking behavioral outbreaks – with anger, and smashing things, and aggression toward the care-givers.

When this has happened in the past, it’s usually been caused by a urinary tract infection (don’t ask – this is common in stroke victims; I have no idea why). But we went by ambulance to Cedars, where they spent hours checking her over, including a brain scan, and concluded that the behavioral problems were not related to any physical condition.

So it was back to the residence, which made me nervous because the by-then increased med dosages (back to levels of a few weeks ago) had not had time to take effect yet, and the behavioral problems resumed on our return. It got extreme enough that the owner called for an emergency evaluation team, seeking orders to have her transferred to the UCLA psychiatric ward, and telling me that Arynne couldn’t remain in residence at his care facility because she was a danger to herself and the staff.

Before an evaluation team could be dispatched, I talked to their representative by phone, and negotiated with her to convince the owner that he would wait till morning, to see if the drugs would kick in and calm the behavior.

By morning the increased dosages had indeed begun to take effect. Crisis averted.

When I showed up, I discovered that Arynne had apparently overheard the discussion of her leaving, understood that to mean she was going to a different residence, and had gotten dressed and put some of her things together. Nothing in life is perfect; I know she has some complaints about certain of the staff, and no doubt other things about her situation there, and I think was pleased at the (mistaken) idea that she was going to be living somewhere else. Though she didn’t express disappointment, I was much pained at having to tell her she had misunderstood.

I then did something that Victoria had cautioned me against doing at this sticky, uncertain time: I asked Arynne if she wanted to go out to lunch with me. Yes, she was pleased at the suggestion. I took her to a hamburger place at the foot of her street – nearby, so if there was a behavioral issue, I could have her quickly back at the residence. She took one look and wouldn’t go in – middle-class isn’t too much of an issue, but cleanliness and the look of a place is. So I drove a few more blocks to a place we both like, Johnny Rockets. Everything went fine. She chose the burger she wanted from the menu (maybe she was pointing at random – I don’t really know), and we shared a mocha malted. After our lunch, balancing on stools at the counter, she returned with me to the residence in a good mood.

So Arynne remains a resident of the care facility, though is now back to being groggy and kind of out of it most of the day. Still, she knows when mealtimes are and shows up in the dining room. And she wakes up enough to have a “conversation” with me when I come … which often lasts only a few minutes before she tells me “Goodbye,” but sometimes is considerably longer.

A frustrating, cliff-hanging week has ended quietly. And the rainstorms have passed, the sun now out in time for the Oscars.

-- Bill

Monday addendum: As I anticipated, when I visited after lunch today, she was in bed, fast asleep — instead of sitting up in the common room of the residence, as had been the situation on the reduced meds. But she woke up, was very happy to see me, looked at some Neiman Marcus and other catalogs with me, babbled away about I know not what but said with mostly smiles and only a couple of frowns, then said goodbye and turned over to go back to sleep.

This is, I expect, what her pattern will be from here on. I dare not ask for her medication dosages to be reduced again. We must make the best we can of the hand we have been dealt.

The best news (I think it was Susan Berman who called my attention to this) is that Arynne seems entirely comfortable with her living arrangement. When we go out for lunch or dinner, on returning to her care facility, she shows no reluctance to go in. No complaints, no frowns, no resistance. She understands that this is where she now lives, and seems quite accepting. That’s very sad, of course … but wonderful when compared to the alternative.

        The adjustment in her medication has been successful. For the time being, at least, no more behavioral outbreaks (which happen when the dosages are too low), and no more sleeping all day (which happens when the dosages are too high). She’s groggy until about lunch time, but alert after that right into the evening.

       
        She’s usually full of smiles when I come in, sometimes leaning in and pulling me to her for a kiss. Other than going out for a meal with me, she continues unwilling to go to any appointments or even to work with a speech therapist I hired who was coming in to the home. It's as if she has given up on trying to get better ... as if she has decided the effort wasn't working and isn't worth pursuing. That's very sad.

Even so, she has recovered a tiny bit of speech, returning to a level of earlier or maybe even a little better. Some things she has said lately:

Looking at a catalog with me, she pointed to some handsome men’s belts and said,  “For you.”
When I shared some pleasing news with her, she announced, “Wonderful, wonderful, wonderful.”
Our housekeeper paid her a visit, with husband and children. Arynne looked at the 9-year-old boy, whom she had not seen in a year or more, and pronounced him  “Handsome.”

When the visiting Linda Lawrence told Arynne she would return for another visit the following day, Arynne wanted to know, “What time will you come?” Such little things, yet how they please me.

Good friends from our San Diego days, Joe and Mary Plassmeyer, drove up for a visit, and Arynne was happily cheered by seeing those familiar faces.

And faithful Linda Lawrence, who set up this blog and faithfully posts these messages for me, came into town last Friday and is paying Arynne visits four days in a row, setting a record and in the process bringing Arynne a special brand of pleasure. When she arrived at the residence facility on Friday, Linda called me to ask whether we four (including Victoria) were having dinner together. I told her to announce the plan to Arynne and see whether she felt like going out. When I arrived to pick them up, Linda told me, “I never saw anyone get dressed so fast!”

For the occasion, Arynne picked out a yellow turtleneck I had recently brought over, along with a pair of white slacks and a favorite jacket. We ate at an Asian-fusion place, Buddha’s Belly, that is a favorite of ours. In the company of Victoria, and with Linda as an out-of-town friend, it was so much like evenings of old. You don’t know whether to be gladdened by the enjoyment or saddened by how far short it falls from the cheer and bright conversation Arynne would once have contributed.

And so we live as normal a life as we can, happy with the shards that remain to us.

-- Bill

Arynne’s behavior has settled down nicely. Her state of awakeness and awareness is quite variable — some days sleepy and not at all active, others up, glad to see me, happy to have a long, if incomprehensible, conversation. She still won’t go out to appointments but …

Old Apple friend Susan Berman can down to spend Sunday with her. (Susan was the first Apple client for both of us, in 1984 — for the big sales conference when the Macintosh was introduced to the sales force. It was Arynne’s first engagement as an Apple speech writer and speech coach — with John Sculley sending around a memo that everyone speaking at a General Session had to be coached by Arynne before going to the podium; there was a line every day outside our room of people waiting to be coached. And Susan was my client, as well: I wrote the Apple II show, the political convention parody in which Bill Campbell read the line, “It’s not size that counts, it’s performance,” and then, when the audience started roaring, said into the microphone, “Who wrote that line?!”)

When I dropped Susan off for her visit, I made a point of telling Arynne that the three of us could go out to dinner if she wanted. Later in the day, Susan later told me, Arynne popped up, went to her closet, and changed into going-out clothes. I was sent for, and the three of us went out to Arynne’s favorite Chinese restaurant.

But other than occasionally going out for a meal, Arynne has become completely uncooperative about appointments. No doctors’ visits, no speech therapy sessions. I hired a speech therapist to come in to the residence, but the last couple of times Arynne wouldn’t have anything to do with her; today, every piece of paper the therapist put in front of her, Arynne tore up. And then finally gave her the “Go away” hand signal.

Why? Has she decided she isn’t making any progress so doesn’t want to bother any more? Or finds it frustrating? Or doesn’t want these strangers trying to wheedle her cooperation? Arynne can’t tell me, so I guess I’ll never know.

But after the speech therapist left, I went away, came back half an hour later, and found Arynne delighted to see me. Affectionate, with lots of smiles, babbling away in her too-familiar gibberish. I brought some catalogs from home (the catalogs still come, a dozen or so a day, even though no one orders from them any longer). Arynne looked through the catalogs with me — something she has not been willing to do for weeks. She pointed out a jacket she would like, and found a belt and a shirt that she announced were “For you.” Delightful. And it gave me an idea or two of things she might like for Valentine’s Day. (Which is a reminder for all husbands who read this.)

It’s now 10pm — still time to get in another hour or two of writing before I pack it in for the night. (I just picked up my third new book assignment; three at a time is a new challenge … but at least the publisher of the most important of the three, Little, Brown, is allowing an 18-month schedule, so that takes a little of the pressure off.

… And so, back to work. Good night, all.

                Bill

First, my great thanks to all of you who sent cards or gifts, and if I dropped the ball in writing my appreciation, please understand and accept this bland blanket word of acknowledgement.

With the help of children and friends, I managed to get through the first holiday season in decades that was not shared with Arynne, or at least not shared with our customary celebrations. Christmas eve dinner I celebrated with Victoria and her Erik, at a restaurant near the Paramount Pictures lot — the place we have been to as a family since Arynne and I moved to LA. Christmas morning I woke with mild food poisoning (ugh!), which meant that Victoria and Arynne enjoyed our traditional Christmas morning (champagne, and caviar with all the trimmings of sour cream, crumbled egg whites and egg yokes, and so on — this year Victoria’s treat) without me. I understand the two of them were not troubled by having to eat my portion of the caviar as well as their usual ration.

(I trust any of our Jewish friends who did not know Arynne would not miss any gift-giving opportunity, explaining why this Jewish family has always celebrated Christmas, will understand and accept.)

By the next day I was recovered, and the family convened again for the opening of gifts. Arynne took obvious pleasure in the experience, unmarred because she did not realize it was a day late. I gave her a silver watch (she had spotted it a few weeks earlier in an ad in the New York Times and pointed it out to me), along with a couple of new blouses (only one of which she decided did not suit her taste — which I consider a triumph), plus some smaller fun items.

Two weeks before Christmas, I flew up to spend a day and a half with son Sheldon, his wife Merrilee, and our only grandchildren, twins Vincent and Elena, now eight. For the first time, neither of them was shy with me and I had the joy of playing the grandpa role to the hilt — reading to them, listening to them take turns reading to me and playing their musical instruments for me, Vincent on the clarinet, Elena on the violin — which of course was Arynne’s instrument in childhood. (Did all readers of this blog know that at Music and Art high school in New York, the “Fame” school, Arynne in her senior year was concert-master, the first-chair violinist? Another of her many, many talents.)

On Friday, I drove Victoria and boyfriend Erik to LAX, where they boarded a flight for Hanoi. They will spend until early February in Vietnam, Laos, and Cambodia, doing the tourist thing, plus a little deep-sea diving, a couple of river cruises, and so on.

As for me, I’ve just begun work on two new books, one of them a biography of Kevin Harrington, the man who essentially invented the infomercial. These two will be books number 23 & 24 for me.

…

I come now to the part of this entry that is difficult to write. Arynne’s situation has not improved. She was continuing to sit all day in her nightgown, half asleep, taking little if any part in activities, unwilling to go out with me to speech therapy, doctor’s appointments, or even to restaurants except on rare occasions, maybe once a month.

I spoke to her doctor about reducing her depression medication, which has sleepiness and torpor (not a word that the drug manufacturer uses, but appropriate) as side effects. The result of the experiment was not what I had hoped for. She did indeed become more alert and receptive, with smiles and a small show of appreciation for my visits … but that state lasted only about a day, quickly replaced by the symptoms that this medication is designed to suppress: crying, and a degree of emotional upset bordering on outright anger. I had the new dosage order quickly countermanded, and by the next day (that is, today), the unhappy emotional behavior is already lessening.

Now begins a search for another medication that might, I hope, dispel the unhappy emotions without the combined effect of unwillingness to participate in daily life. Why did it take me so long to begin the search for alternatives? I suppose I could say that this is what one imagines the doctors are supposed to be doing, but that surely doesn’t explain my not much earlier launching this effort to prod and nudge the professionals into action. Maybe they have been reluctant because the medication Arynne is on now is the mildest in the arsenal for this situation. Even so, it’s past time to try alternatives. Because unwillingness to do much of anything but sit in a chair half asleep means that no effort at improving speech is taking place. And, to me, that’s the equivalent of giving up hope for even some modicum of recovery, which I find too sad to even contemplate.

So I will direct any effort to explore other possible miracles from the labs of the pharmaceutical companies.

One of Arynne’s closest friends, Linda Brown, a companion of the early Apple Computer days, is in town for the weekend specifically to see Arynne. It has not been the best of weekends to visit, but today, with the anger subsided somewhat, Linda was able to have a visit of a couple of hours, which pleased me a great deal. My own visit was greeting with facial expressions of annoyance, and a “Goodbye now” after only a few minutes.

I’m sorry I don’t have happier news to share for the start of the new year. Maybe next time.

All of you who pray — please don’t stop.

-- Bill

This will be the first holiday celebration in a great many years that Arynne has not been in charge of decorations for the house, gift buying, card mailings, party planning  … just about everything except dinner reservations for Christmas eve and New Years eve. I’m doing my best to distract myself with friends old and new, and so far seem to be getting through the season emotionally intact.

For the past couple of weeks, Arynne has seemed to be in a down cycle — not wanting to rouse herself for going out, passing up speech therapy, doctors’ appointments, even the temptation of restaurant meals with me. But today she showed some spirit. She still refused my dinner invitation, but worked with me on a speech practice and a cognition practice, then led me to her room, where she indicated she wanted to work with me at her computer on speech/cognition software that I’ve loaded onto her Mac. A small Bravo.

Arynne hasn’t had many visitors recently … which I regret since visits from old friends are so good for her (even though she almost invariably cries — perhaps out of frustration, or the pain of old memories. Visiting recently (and separately) were two Apple early-days friends, Gordon Garb and Ian Newman. My special thanks to both for giving Arynne the extra boost to her spirits.

We’ve never been people to pass up a gift-giving holiday, and continue the tradition this year. Christmas morning Victoria and I will join Arynne at the residence for our traditional caviar and Champagne (under a dispensation from her doctors, who say alcohol is okay in small amounts), and for the opening of presents. I had asked her psychiatrist (who specializes in patients like Arynne) about bringing her to the house for the day; he cautioned that the reaction would be unpredictable, but ran a significant risk of upsetting her when it came time to return to the residential care facility. However, he did give his blessing to my trying an overnight with Arynne at some hotel within easy striking distance, and so early in the new year, I will see if I can entice her to a Santa Barbara overnight with me. It’s a drive of only an hour or so, and a place familiar to us thanks to all those years of Victoria riding in the annual Thanksgiving horse show there.

To those of you who are interested in following how I'm coping with this ordeal, I continue to visit Arynne twice every day. As well — at the urging of both of our children, and a bevy of professionals connected with Arynne's case — I am keeping busy with friends old and new including some I have met on the picket line (yes, I've been marching almost daily with a picket sign, fulfilling my obligations as a Writers Guild member). Wednesday I fly up to spend a couple of days with Sheldon, his wife, and the twin grandchildren in Santa Rosa — my first time away from Arynne since our lives changed so suddenly last March; the visit will help keep my spirits up in this special but for us difficult time of year.

My very best blessings to each and every one of you.

                Bill

After a long dry spell of saying almost nothing understandable, Arynne has come out of that tunnel and is now speaking whole phrases and sentence. But it still only a very small percentage of her language that is understandable, and some days there’s still none at all. And regrettably, this improvement doesn’t significantly increase the likelihood that she will be able to recover conversational speech.

Just as samples as what she comes up with, in a single conversation the other day, she said, “I told her the same thing” and a bit later asked, “Where was I when I bought ….”

When she saw me writing those down (to share with the speech therapist, and for my record of her speech), she said, “What does it say? Show me.”

I showed her. Whether she could read it is a subject for conjecture. But when we do picture recognition drills, if I hand her a slip of paper (to be matched with the correct photo) and inadvertently pass it to her upside down, she immediately turns it right side up.

It’s heartbreaking that such small things are worth writing about, but that is our present reality.

Yesterday I went to La Boehme with my brother. The LA Opera company has staged a truly magnificent production. Still, this was the first opera in many years for which my companion wasn’t Arynne.

For Thanksgiving, Victoria and I took Arynne to the Four Seasons in Beverly Hills, a favorite hotel of ours, and a place where we have celebrated a number of holidays. It wasn’t one of her better days; she seemed to take little enjoyment from being there with us, and ate very little. Not even any dessert … despite her sweet tooth. (When I bring cookies, I bring only three or four at a time because she will sometimes devour on the spot whatever I bring.)

The stroke was this past March, making this the first holiday season with Arynne not able to plan, and buy too many presents, and enjoy the festivities to the fullest. But I’m determined not to let myself be saddened. Too many people know depression at this time of year. I’m thankful to have Arynne in my life, thankful she knows me and is affectionate, giving me hugs and kisses and obviously appreciating mine.

I have become grateful for such small favors, such small signs of the Arynne who was. To the extent granted me, she is still my Arynne and will ever be.

Yet here I am, my eyes filling with tears at writing this.

        Happy holidays,
        Bill

Arynne and I have settled into a comfortable routine. She is doing nicely at the residence, I visit her virtually every day, sometimes twice. I come with a few cookies, sometimes with flowers. Twice a week we go to speech therapy, a couple of times a week we go out for lunch or dinner. Tuesday this week we’ll again go on a docent-led tour of part of the permanent collection at the Los Angeles County Museum of Art.

Arynne is showing small signs of regaining some speech capability that she has lost since the hospital stay and starting to live in the home. And she continues to be able to pick her food selection from the menu, even in unfamiliar restaurants. Gary Gerstenblith, the husband of Arynne’s niece Garth, saw a display of that when he visited and went out to dinner with us.

I’m also happy to report that Arynne has done a couple of new sketches. She’s not producing enough for an art show yet, but any progress on that front is pleasing.

I got a funny e-mail from Amy Bonetti. Somehow she has received three phone calls from Arynne. The answer, I finally figured out, is that Amy is the first name on Arynne’s cell phone. Somehow Arynne was pressing buttons that called up the list and then placed the call. Amy was hoping I might be able to tell her what Arynne is saying. I answered:

As for what she was trying to say -- you got a taste of what my life is like now. Only 5 or 10% makes sense. Or is it more like 1%?

But she is very loving and affectionate these days, and that's wonderful.

We go out to lunch or dinner a couple of times a week or more. It's a semblance of a normal life except that there's no real communication.

Tough, right? But the love is still there between us, and that’s the most important part.

… Think of me this week as I visit Arynne in the mornings and walk the Writers Guild picket lines in the afternoons.

PS – Karen … she is still hugging your teddy bear. How did you ever come up with that idea? She hadn’t had a toy like that since she was a child, yet loves this one.

And Linda Brown — those fabulous flowers lend a lovely touch to Arynne’s room.

-- Bill