2008
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).
2009
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 http://www.caringbridge.org/visit/geraldmweinberg
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.