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Thursday, September 20, 2018

On the Road Again - A Memoir of Friendship (Part 3)



2008 brought more wonders on the road: the glory of White Sands, and the black lava rock on the other side of the mountain. We toured Carlsbad Caverns, and sat in silent awe at dusk as thousands of bats poured out from the cave mouth and spiraled into the darkening sky. (It was late in the season, so there were only thousands of bats, rather than the millions you can see earlier.)

Inside one of the caverns
Jerry wearing his patriotic shirt for Election Day

 AYE coincided that year with the US election. A crowd of us watched the results in the hotel lobby, excited and almost disbelieving at the historic first election of a Black president.

 I remember the 2008 trip for the places we went, but also because we never stopped talking. Emails before and after the trip remind me that the “everything” we talked about included our childhoods, trust, and safety. I had to be in Europe to teach a tutorial immediately after AYE, so I couldn’t do the trip back to ABQ. We talked about Jerry finding another travel companion, but in the end he drove:

From JW Nov 13: Alone, but with you as a virtual companion. For example, we played the P game, first with X, but that didn't last long, so we switched to W. I woke at 3.30 and left at 4am, drove it easily in one day on the Interstate.

The previous year we had spent much of one afternoon in the Jeep playing the P-game: a sort of I Spy using only words that began with P—because we both identified as Meyers Briggs P’s (of course).


In 2009, Jerry was seriously ill. At the Experiential Session Design class in June, he was already in a lot of pain and having to take large doses of painkillers. It got much worse. By Sept 9, Jerry knew that whatever was causing his symptoms was critical, but he was determined to go to AYE as usual. He emailed me:

Hopefully, you can do most of the driving to/from PHX. My goal is to be in proper shape for the trip/conference/trip.

By mid-October, Jerry knew that he had a rare and deadly cancer of the thymus gland. He had considerable pain all over his body, and was feeling weak and exhausted from both the cancer and the painkillers he was forced to take. He needed surgery to save his life, but the surgeons he consulted differed over whether it would be “worth it” to operate.

After Jerry writing that “things change daily” I suggested a reality check on our AYE travel plans.

I could have predicted his response.

Jerry: Don't worry about it. You'll either go with me to AYE, stay at home to keep me company in my sick bed, or be an honored guest at my cremation and scattering.

Fiona: You really know how to show a girl a good time! :-)

I arrived in ABQ November 1, and between trips to places like the Albuquerque Bio Park we began architecting our route to PHX. (Jerry was no more into unnecessary planning than I am, so  “architecting” is the right word here.) Jerry was determined that we were going to make it an enjoyable trip that would take us to places we hadn’t been before.

Jerry had a medical appointment the morning of Wednesday November 4th where he was to hear the treatment plan devised by his cancer team. Dani drove her van to the appointment and I drove the Jeep so Jerry and I could set out immediately afterwards. I read in the waiting room while Dani and Jerry met with the medical people and then said their farewells.

We got into the Jeep and I asked, “So, what’s the plan?” “I’ll tell you after lunch.” Lunch was in a casino on the highway out of town. Jerry loved lunching in casinos, places he called “The Natives’ Revenge”. The buffet food was good, plentiful, cheap, and plain—all of which he approved—and he could eat as much ice cream as he wanted. I was happy enough with the food, but I hated scuttling past the gambling machines, overwhelmed in the semi-darkness by hideous flashing electronic lights and beeps and silent, pathetic people glued to the screens.

After lunch, just as I was about to turn onto the highway, Jerry announced, "The news is that I have 3 months to live."

Probably, I swore. I don’t remember. I do remember stopping and turning back into the parking lot. “What are you doing?”, Jerry grumbled. I replied, “Well you may not need time to absorb that, but I do!” On the road later, he allowed that, well 3 months was the worst case; 3 years the best. He said the only treatment they had offered him was palliative, end-of-life care that would make the inevitable death easier for him.

Meanwhile, Dani had sent out an email saying much the same things, less dramatically, but being very clear that they would seek a second opinion.

That first day on the road was longer than we’d intended. I wrote to my partner:

To JS:
We underestimated the time—or overestimated how far we could go in the time—and then came to a tiny village where the (little) highway was closed and there was a long detour. Thankfully, we'd already had the most difficult mountain driving for the day, because all of this was in the dark. Getting out to pee in the woods on a lonely highway with only our high beams to light us had its challenges—and I was very worried about Jerry tottering off in the dark! Twice.

In the mountains, day 1
We finally fetched up after 8:00 pm in a hamlet where there was a motel of sorts and a bar & grill that seemed to be open, though we didn't know for how long. It was very rustic, with 3 somewhat dilapidated lodge-type buildings that seemed to be 2-storey. There was a very steep set of stairs down to the motel office, which Jerry had to navigate because it was his credit card and he needed to sign. (He's actually walking better than at CAST in July, though who knows for how long.)  The motel lady was about 100, smoking like a chimney, and incredibly dithery. Just for the hell of it, I asked about wifi, knowing she wouldn't have it. She didn't know what it was. After Jerry came down & filled in the forms and gave her his card, she pottered about processing it, checking back twice for the amount. Jerry and I kept looking at each other and grinning and suppressing the urge to tell her to hurry up because we were starving and worried the restaurant would close. She spent ages explaining how to find our rooms and we didn't understand a word of it. But we didn't stop to check, just went straight across the road to eat. We had to walk through the smoky bar to get to the grill part, which was a separate space but with no walls. Food was good, though—we each had a T-bone steak—and the people friendly and nice, as often in rural America. (Well, they probably vote Republican and hunt elk and other harmless creatures, but they're nice to Jerry and me.)
There was nowhere to have breakfast or even coffee the next morning, so Jerry passed me car food as I drove: beef jerky, water, cheese strings, and caramels.
To JS:
Finally, about 11:00 am, we found a mining town big enough to have a supermarket with a deli counter and I got a sandwich and coke. The mine devastation to the mountains was incredible. They have basically shaved off the surfaces. It was eerily beautiful because all the colours were exposed and some of the peaks looked like Mayan terrace ruins, but it was very Mordor-like in essence.

To Dani:
We have had (what is for me) a wonderful day and a half driving through gorgeous mountain scenery. As we planned, I am doing all the—sometimes quite challenging—driving, and enjoying it thoroughly. Jerry seems to be enjoying it too, but it does tire him to go through difficult terrain, even as a passenger. He tries to stay awake to keep me company and mostly succeeds but sometimes he snoozes for a few minutes [He was occasionally dropping off even in the middle of a sentence]. Today was especially tiring for him, because it was a whole day and much of it was on very twisty roads with steep grades and a sheer drop that was often on his side of the car. He oohed and ahhed over the scenery,  saying things like "Look at that! No, don't you look—you keep your eyes on the road!" I'd vaguely point at something fabulous and he'd say, "Keep your hands on the wheel!"

Something fabulous
To JS:
He's being very practical and grown-up about it all, but I don't know whether that can or will last forever. When he's not doing that he's making horrible jokes, and he likes me to make horrible jokes too. A thing that comes easily to me, of course. Yesterday he cut his hand on some barbed wire when we both got out to pee in the forest in the dark. When I asked him about it today, he said he wouldn't know yet if he had tetanus—but that would be a fine cure for cancer!

The mountain roads were fabulous, though I often drove half over the centre of the road because of the curves and frightening drops. The speed limit frequently dropped to 35, 25, 15, and even 10 mph going around curves on what the road signs described as "mountain grades". We went up over 9,000 feet and in 2 or 3 places there was ice on the road where it had snowed and not melted because that part of the road was shadowed by a rocky cliff on one side.
I had stopped once, having spotted something approaching the road edge from the woods. We watched in silent wonder and delight as two beautiful creatures, first a mother and then a baby, crossed in front of the Jeep. We didn’t know what they were. We thought they looked almost like lemurs, with long curly tails and long snouts. Jerry searched Southwest fauna when we got back to ABQ, and found that they were coatimundi.

Later, the road ran through golden meadows. We didn’t see any of the elk or bighorn sheep the signs warned about (I always interpret those signs as promises, but they aren’t really.), but I did see a little herd of pronghorn antelopes. That night we stayed in a “modern motel”, which Jerry wanted after the previous night’s rustic experience. There was even a continental breakfast on offer.

Later – to JS and Dani
I forgot to tell you a couple of Jerryisms. He might be tired, but he is still Jerry. At a lookout place we were admiring a sensational view and I said I hadn't brought my telephoto because I hadn't expected we'd go anywhere interesting. (After all, only a week ago he was talking about taking the interstate directly to Phoenix.) He said, "Idiot!"

From Dani: Yep.  He'd have had to be near death to be willing to take the interstate directly!  (though maybe on the way home....)

Later as I was concentrating on a tricky bit of road, Jerry said "talk to me, so I know you're awake". So I asked him if he was planning to do anything differently for his 3 AYE sessions, all of which he has done before—and I've assisted with. Jerry said, "It's much too soon to think about that!"

From Dani: Yep again.  Both of us are seriously allergic to dealing with anything too soon!

On the last leg to Phoenix, we stopped at Fort Apache, now a Native reservation. It wasn’t at all what I expected, but we both enjoyed exploring the Apache museum, and were especially moved by the movie, in which an elder told the Apache creation story—the circle from birth to death. We both left with tears in our eyes. We didn’t talk about that.

Nov 7 – to JS:
We got to Phoenix, and OF COURSE Jerry's wheelchair [pre-ordered by Dani] had not arrived. He was very upset—tired anyway from the journey—and convinced he couldn't walk to his room, which is quite close to the lobby and on the same level. He could, and did, but meanwhile I got to organize the hotel into sorting out the problem. One of the guys also came out to the Jeep with me and collected all Jerry's luggage and delivered it to him—of which there is lots, including books to sell, props for his sessions, his oxygen machine, a big box of doughnuts he got cheap this morning while I sought breakfast, etc. etc.—plus all the usual luggage.

He insisted on having dinner with me in the ghastly hotel restaurant, and was much more cheerful once he realized we'd get him a wheelchair somehow—if I had to go out and buy one!!

Nov 7 - To Dani
Good news is that the hotel came through magnificently, and got Jerry a wheelchair for at least the weekend from another hotel.

Meanwhile Jerry's taken care of. He wheeled himself to dinner and has been happily opening doors like a veteran.

One down. Now for the conference.

Later Nov 7 - To Dani
The guy from Preferred Home Care just delivered Jerry's wheelchair to my door. So now he has one for each foot!

Nov 9 – to a mutual friend
She had written: How is he doing? And how are people reacting? I assume he's being open about his condition, but even just seeing him in a wheelchair would be upsetting.

He would always be open, I think. So far, people are just talking to him normally and helping him with the wheelchair if he wants. He's been in great form today. His voice is a little quieter, but seeing him at the opening dinner—and ignoring the wheelchair and the fact that he didn't circulate—you’d never know there was any difference.

We went this morning to a Quaker Meeting. Atheist that I am, I was curious [about the silence] and had asked Jerry months ago if he would take me to one on this trip. He still wanted to do it, so he found the local Meeting House on the web and off we went. It was very interesting, with a preliminary discussion among a few people about immigration, which is of course a huge issue in Arizona with people coming over the border and dying in the desert. It's good to see the Friends still have a social conscience. I liked the hour of contemplation—the shared silence in safety. I think it was important for both of us in different ways. At the end, visitors were invited to introduce themselves, which we each did, and we said a little about our reaction to the Meeting. But when we got in the car, Jerry said, "So, report!"

So in some ways nothing has changed. But then he retreated to his hotel room for the rest of the day, only emerging about half an hour before the opening dinner, where in previous years he has hung out all day in the lobby greeting arrivals.

So far at least Jerry says he isn't disturbed by impending death, that he has been in pain all his life and that will end when he dies. And he feels his capacities are diminishing. He can't write, and can no longer even read much. To me, at least, he is being very practical about it. We talk about it as an interesting phenomenon, and sometimes make horrible jokes about it: "Well, if you drive us off this cliff, that would be a cure for cancer." "Dearly though I love you, Jerry, I gotta tell you I don't plan to die with you."

Nov 10 – To Dani
Jerry has been in great form today, even appearing at breakfast (!). That's the first time in 8 years I've seen him there—though I think he was there only to talk, not to eat. I suspect he didn't want to miss anything.

His "Say No" session today was slower than I've seen it, and we did less role play, but people still liked it and obviously learned from it. My principal job—apart from the single role play I did trying to get a would-be no-sayer to say yes—was to remind Jerry (frequently) to talk into the microphone Steve [Smith] had very sensibly arranged for him. Of course, he detached it from its stand and held it in his hand. So people didn't hear him so well when he talked with his hands, or waved the mike around his ear! [At some point in one of his sessions, he tossed the mike aside.] In the break he was happily selling books from his wheelchair. This evening, he did his usual thing of going out to dinner with a few people he hadn't met before, and there’s a signup sheet for a Tues group of newbies to dine with him also.

A good conference so far.

Actually using the microphone

Talking with his hands or conducting Beethoven?
Nov 11 – to Dani
Jerry was in absolutely top form today, leading his organizational mapping session and keeping a substantial group of people enthralled for nearly an hour after the session was supposed to end.  

Dani wrote: Aha!  We've discovered a new cure for cancer! And I think he really enjoys wheeling around!

Yep, that's obvious. When we did the wheelchair swap and briefly had 2 chairs in the same space, he challenged me to a duel, or maybe a race, It was tempting, of course.

Dani wrote: I can't believe you refused.

[Neither can I, now.]

Afterwards, a friend of mine who is an AYE newbie said he wanted to discuss a problem with Jerry, but was uncomfortable asking for 10 or 15 minutes of his time and energy when Jerry is so sick. I said, "Ask him. If he can't do it, he'll tell you so, or maybe ask you to wait till tomorrow." Later I saw Jerry and my friend off in a corner talking for at least half an hour. My friend was glowing when I saw him later—and he hugged me and said I was terrific! I dunno what I did, but I sure know what Jerry did.  

Nov 11- from Dani
I don't know if he told you about an email we got from a woman in Seattle whose mother had this kind of cancer - 3 years ago - and is doing very well (with frequent  monitoring).  Laura sounds wonderful and so eager to help.  She came across us on the CaringBridge website and just decided to write.  She also told us about an email list for thymic cancer, and I've joined.  I think it will be helpful.

Nov 11 – to JS
Jerry was terrific today. After lunch he had his session this afternoon on organizational mapping. He was in absolutely top form. He loves doing this stuff and he does it superbly, keeping a substantial group of people enthralled for an hour after the session was supposed to end. After that we had the book signing BOF. I got him to sign my copy of his self-published novel The Mistress of Molecules. I'd bargained him down from $15 to $10, with a promise of reimbursement if I post a review on Amazon. So he teased that I would only get 2/3 of the words (but was distressed, because his hands are shaky and it affects his handwriting). He wrote something and signed it Jerry Weinberg. He said, "See, it would have been Jerry Marvin Weinberg if you'd paid full price." I read what he'd written and nearly burst into tears there & then.

Signing a book

The next day, Jerry had his final session, Transforming Rules into Guides. I didn’t email about it, but I remember that it went well, and the “star” was pleased.

Flip chart from Transforming Rules

Working with the "star" to transform a rule

12-Nov - To JS
Jerry has decided he wants to leave tomorrow morning and drive more-or-less straight home. The conference has totally energized him and changed his attitude. He seems much more determined to live, and has agreed to schedule a PSL class for May, partly to motivate himself to stay alive. (Although people can get their money back if he dies before the class, and they want a refund.) He set up a website here where he can journal his progress and people can leave messages of support, and of course has had an enormous response.

In conversation with an old friend

12-Nov – to JS
Once we finally got going we had a lovely drive. Jerry dropped off to sleep briefly a few times, but was much livelier than on the way out. We talked and laughed constantly the way we have on previous trips. We stopped for lunch in Holbrook (I think! It might have been Winslow.) at a Hopi-run diner and Jerry said if I hadn't had chicken-fried steak I should try it. My god—the fat content! By the time I'd eaten the steak all covered in gravy—and it was good—and the mashed potatoes, also under gravy, I'd gained about 10 lbs.

We stopped briefly in the Painted Desert National Park, at the other end from where I went before, and the colours were much more spectacular. But we were quite late, and you must be in your car and heading for the exit without stopping by 5:00 pm. At 5 minutes to 5:00, I was pretty laid back about it and wanted to stop briefly and look, but Jerry got quite antsy that we would get locked in the park—just as you would! He said he was flattered that I found him just like you, and also said if we had got locked in he'd have made me sleep on a cactus. He seemed to think that having 90 pounds on me gave him an advantage, even in his weakened condition.

Anyway, it was gorgeous, and I didn't get to see hardly any of it or take any photos, so I have to go back there. I told Jerry he has to stay alive so we can go there on our next trip.

We're staying tonight in Gallup. Jerry insisted on me driving right through to the other end before admitting we weren't going to find a good motel there, and we had to backtrack to the western suburbs. He's so funny about it. He never wants to believe we won't find exactly what we're looking for, if we just go on a little further. Sometimes that means we drive right out of town and end up not finding anything at all till the next town. I quite suddenly had an energy crash and didn't trust myself to drive even the few miles back on a slow city road, so Jerry drove it. I thought it was fatigue, but soon realized I was starving. We finally found a cheap but clean Day's Inn with wifi and a Hispanic family restaurant next door. Very basic, but the burger and salad were good and Jerry liked his pork chop.

All these towns are laid out along the railroad, and some, like the one we had lunch in, are quite picturesque in a totally non-touristy way. Gallup has lots of pawn shops and Indian jewelry places, so we're going to window-shop tomorrow.

I told Jerry he felt to me much more light-hearted. He wouldn't admit he had been down before—or even "disturbed"—but he obviously was. [Who wouldn’t be?] He just kept saying that even if he lived the full 3 years, it would be with ever-decreasing capacity. Now he's not saying that. And who knows? Maybe it is terminal. But maybe it isn't—or at least, maybe it's not going to be all that awful all that quickly.

I'll be back in Corrales tomorrow. Only 140 miles or so from here.

Nov 13 – to JS
We had a short, but somewhat arduous drive today, as it rained really heavily and visibility was bad. Judith [my B&B host] says there's a winter storm warning and we may get snow by Sunday. We stopped at one shop in Gallup—but one was more than enough. They had a HUGE selection of pawn and new stuff: everything from saddles, to watchbands, to jewelry, to incredible beaded stuff that wasn't for sale... The rug room was enormous and had a massive selection. Jerry and the saleswoman taught me some stuff about Navajo rugs: different traditional patterns and colours, and fine vs. coarser weave. It was amazing. We got into quite a long talk with her, and it turns out she writes. In the end, I sold her a book. I had the 3 copies [of Gift of Time] Wendy brought me to replace the ones I gave away for reviews. [Jerry LOVED it that I’d sold a book. Selling books was among his very most favourite things.]

 Jerry was exhausted after the conference and the trip, as I also seemed to be, and we spent a couple of days watching college football on television and talking. Jerry tried to teach me about football, which he described as a “mental” game, but my interest was mild at best and I got quite a lot of work done on my laptop during games, editing pieces I’d solicited for the Women Testers edition of STC Magazine.

November 18, after Jerry’s medical appointment in the morning, I drove him up into the Sandia Mountains. We stopped to look at the grassy caldera and breathe in the peace I’ve always experienced there. I don’t remember much else about that day except that it was a beautiful day. We hit a patch of ice on the road at one point and Jerry started to tell me how to negotiate it and then stopped himself: “I forgot: you’re Canadian. You know how to drive on this stuff.”

I flew home the next day.


StarByte said...

Thanks Fiona. Lovely tribute to Jerry.

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