[governance] Jo-Anne Scott remembered

[Paul Wilson]

Thanks for this George.

Jo-Anne’s partner, Scott Weikart, write this beautiful, more personal account, of life and her final days. He’s happy to have it shared in her memory, especially for those who struggle in any way with Alzheimer’s.

I really hope to see Jo-Anne recognised in ISOC’s Hall of Fame; she was a pioneer.

Paul.


-------- Forwarded Message --------

Subject: (mostly) sad news
Date: Tue, 6 Aug 2019 16:19:11 -0700
From: Scott Weikart <sweikart at gmail.com>

I have (mostly) sad news: Jo-Anne Scott died unexpectedly (on Sunday,
July 14, 2019), at home in her own bed, clutching her green stuffed
hippo to her neck for comfort. I say "mostly sad", because it was a
good time to die: She declined significantly over the previous month,
from her severe Alzheimer's disease. She had started sleeping all day
long, and then lost the use of her legs (on the few days she didn't
sleep all day long, I used her Hoyer lift (personal crane) to put her in
her wheelchair, so I could take her out to sit on the front porch; but I
had to wrap her gait belt around her armpits and the back of the chair,
to prevent her head from ending up in her knees). Along with the
physical decline, she declined mentally: Her interaction with the people
around her became much more limited.

In retrospect (if I'd known she was on the verge of dying), I would have
spent more time sitting with her and consoling/stroking her the last
couple of her days: but I take solace in all I was able to do 'for' and
'with' her over the last decade (and her PCP's comment that I was a
better caregiver than the professionals; and her neurologist's comment
that "You set the bar, in my experience, for loving, flexible, creative
caregiving; I am grateful to you for those years of hard, patient work:
You did really well by her"). [I was able to get her body to Stanford
in time for her brain to be preserved for the research study in which
she participated: She really appreciated being a research guinea pig, to
help prevent future generations from experiencing her disease.]

Jo-Anne's best friend Laurel (50 years!) had driven down 3 weeks
earlier, and two friends dropped by; I had to wake Jo-Anne for the
visit, but she was relatively alert, and enjoyed Laurel's Samoyed puppy
(see attached picture; the second picture is Jo-Anne gazing lovingly at
Laurel). Laurel and I have shared the sadness of Jo-Anne's death, and
also good remembrances; Laurel offered the perspective that we were a
good match for each other, and Jo-Anne was lucky to have me over the
last decade and last year (in the days after, friends and siblings have
said the same, a comfort). One night, Laurel and I spent a couple of
hours emailing back and forth with the insights/changes we'd gained from
our closeness with Jo-Anne (which was not conducive to a good night's
sleep :-) ... when I saw her the next day, I couldn't get enough
physical contact with her.

Jo-Anne was diagnosed with very-mild Alzheimer's disease 10 years
earlier (after 3 years of substantial short-term memory loss; in fact,
her cognitive impairment literally started around 1990: The disease
starts early, and grows slowly). Our journey together with her
Alzheimer's disease was hard, but our life together was good, and our
love deepened. Up until 3 years ago, Jo-Anne could still spend her day
bicycling all over town by herself (which she loved, and always wanted
to do), festooned with tracking devices (occasionally, I'd see she was
headed away from home late in the day, and I'd hop on my bike and chase
after her). I attached a picture of us that a friend took, when we'd
just biked to a local event. We often took our bikes on Caltrain to San
Francisco, biked up to Golden Gate Park, and spent the day in the
science museum (Jo-Anne loved nature, and turned me into a nature
lover). Then Jo-Anne started spending 3 days a week at (wonderful)
Rosener House, doing all kinds of activities with fellow folks with
dementia (in her first year there, the staff would send new folks to
hang out with her, because she was engaging). When she couldn't
reliably follow me on her bike, we got a tandem bike, and biked back and
forth to Rosener House together (with a long bike ride home at the end
of the day: Frequent, extended aerobic exercise is the best thing you
can do for your brain). In early 2018, Jo-Anne started sleeping much
longer, so she could no longer attend Rosener House; soon after, she
started having trouble walking. Then Jo-Anne acquired a fearless
companion (she was not bothered by my warning that Jo-Anne once stepped
on my foot and broke a toe) from Mon Ami (whose new techie is Steve
Fram, ex-Technical Director at IGC!), who got Jo-Anne back into walking,
and setup Jo-Anne's smartphone so she could listen to 70's rock-and-roll
and soul music. Jo-Anne's sleep got even more erratic, so planning Mon
Ami visits became too hard; but a wonderful neighbor started taking
Jo-Anne on long walks (she made herself available with just an hours
notice, on the days Jo-Anne awoke in time); by late fall of 2018,
Jo-Anne could walk 10 blocks (mostly on her own) with her neighbor
friend (who Jo-Anne now recognized, and appreciated). By 2019, Jo-Anne
rarely spoke phrases, but still understood quite well, and could answer
(repeated) questions. We listened to podcasts as we ate, and she'd
laugh at jokes, and exclaim about global warming news (guiding my
selection of the podcasts we'd listen to). Three months before her
death, I went in to the bedroom to see if she was awake, and she gave me
a big smile, and said "I've been waiting for you!": She was still
laughing at my jokes and foibles, full of smiles, always wanted to have
her smartphone strapped to her arm so she could listen to music
(sometimes tapping her feet). In her last few months, it took 3
(wonderful) neighbors to take her for a walk; but she always liked it,
liked seeing the flowers and animals, wanted to continue even as she
wore out her brain trying to consciously control her leg muscles. Even
in her last month, she still recognized and loved/appreciated old
friends, enjoying hanging out with people, laughed and smiled. Her last
decade could have been so much worse, and was wonderful in many ways.
It was an honor and privilege to take care of her, and I've grown so
much in the process.

Jo-Anne was courageous. As a teenager, she and her best friend Laurel
setup camp near a cliff, and found themselves cornered by adult bears
with cubs: They banged away on their metal cups with their spoons, until
the bears trundled away. Another time, Jo-Anne and I were walking a
trail in Big Sur: Jo-Anne jumped a couple of feet into the air to get
away from a rattlesnake (she was very athletic), but was otherwise
unperturbed. Another time, we parked in a back alley of the old Whiskey
Gulch in East Palo Alto (where my first non-profit got started), so I
could finish my work before driving to Yosemite; Jo-Anne heard a noise,
went outside to check our van, found that a suitcase had been stolen,
then chased after the thief (in the dark): She found him rummaging
through the suitcase's contents, yelled at him to chase him away, then
fetched the suitcase and contents and brought them back. This
courageousness helped our journey with Alzheimer's: Jo-Anne was always
willing to do most anything for researchers; or to try most anything to
fight the disease, to try to slow-down or overcome the ravages.

In decades past, people who met Jo-Anne usually noticed that she was
nice and friendly. If they saw more of her, they might realize she was
thoughtful/perceptive about people (she was active in a group of people
who did peer-counseling; one of our friends told me she was his best
counselor). And she was very helpful. When her ex-husband's brother
was going through hard times, Jo-Anne let him live in her house for many
months. Jo-Anne regularly visited a schizophrenic friend, for years
(ignoring his verbal "advances"); she even went to court to prevent
California from making him a "ward of the state".

People who spent time talking to Jo-Anne would also realize how smart
she was. She was an amazing person. I called her a "Renaissance
woman": She'd done so many things, and could teach herself to do most
anything ...

Jo-Anne realized she had picked up racism towards Latinos from her
mother: So she took Spanish classes, then lived in Central America for
half a year; she saw Nicaraguans fighting against an oppressive
dictator, and came home with a strong appreciation for how hard peasants
had to work to support their families. During the '80's, she worked
hard to prevent the Reagan and Bush administrations from intervening
militarily against Central Americans' struggle for popular control of
their own countries. She was coordinator for a college group (that did
lobbying, and organized speaking events and demonstrations), helped run
a political radio program, led a prominent human rights lawyer on a
national speaking tour, co-edited a scholarly book, lobbied at the
Democratic National Convention in San Francisco, lobbied her
Congressional representative (the delegation made his hands sweat :-).
One of the culminations of this work was her creation of CARNet (a
Spanish "pun"; it stands for Central America Resource Network), as a
subset of PeaceNet (that I helped create). She interned with various DC
pressure groups to teach them how to put their information into the
bulletin boards she created for each Central American country, and
helped them build communication channels with grassroots organizations
(so the DC groups could align legislative lobbying with local activism;
I now consult for a human rights organization, and its "forefather" used
to regularly download information from CARNet). She spent months in
Nicaragua (while the US was waging the Contra war against the country),
helping create Nicarao (a system like PeaceNet). She traveled up and
down Central America teaching NGOs (in Spanish) how to use Nicarao's
email and bulletins boards (over 2400 baud modems ?!); when she arrived
back in Managua, they took one look at her and said "you've got
hepatitis, you have to go home".

In the '90's (just as her cognition was starting to decline from the
disease), she held jobs where she taught herself how to write
spreadsheet macros and build database applications. One weekend I flew
off on a business trip, and when I came home she'd replaced the furnace
(including hooking-up the gas line, and replacing/insulating the
ducting) - I don't know how she did it! Then she spent 5 years doing
all the logistics to bring techies from all the most underdeveloped
countries (using all 4 languages she spoke) to a central location (the
place where ISoc, the Internet Society, would have their annual
meeting), so volunteers could teach the techies how to connect their
countries to the Internet; we have lots of wonderful knickknacks that
the mostly-young techies gave to her, she was sort-of their den mother.
By the end of that 5 year period, she told a friend that the work got
harder each year: She was already aware that her cognition was
declining, but she thought it was hormonal issues from menopause (she
had serious hot flashes). As she had more and more difficulty doing the
myriad of required tasks, she didn't get much support from the
administrative folks who ran the conferences (nor from me, one of my big
regrets in life) ... but one lefty techie believed in her, and hired her
to run a workshop in South Africa (where she mentored some local woman,
so they could run future workshops themselves - they probably helped
Jo-Anne with tasks that had become harder for her). And when the ISoc
conference came back to SF a few years later, all the techies were glad
to see her; so she hired a full-size bus plus driver, and narrated a
tour of San Francisco for them (I was her guinea pig on a dry run, and
she did a great job!).

In the '00's, Jo-Anne did computer consulting for a friend who ran a
travel agency, including building a website that would collect contact
info (she taught herself to do all this). And she became a serious
volunteer at the local community cable TV studio: She was the 3rd most
active volunteer for a number of years in a row, winning awards at their
annual dinner. She did computer graphics, sound, camera, directing, the
works. As her memory got worse: First she stopped directing; then she
stopped doing computer graphics; and finally, she had to stop doing
camera, because she'd immediately forget cues from the director (this
was around the time she was diagnosed with Mild Cognitive Impairment,
mid-2006).

I recently stumbled upon the best illustration of Jo-Anne as Renaissance
woman. As I was gleaning distinctive documents from her office, I came
across lots of leaflets from the plays put on by her community-theater
group in the '70's; as I scanned the leaflets, I realized that Jo-Anne
filled the roles of actor, singer, dancer, player of piano and
Renaissance stringed instruments, director, producer, set designer,
bookkeeper, etc. You wanted Jo-Anne in your group!

I'm co-chair and citizen scientist for the Community Advisory Board of
Stanford 's Alzheimer's Disease Research Center. They recently filmed
me as caregiver: I described our life together, how I developed skills
and adaptations as Jo-Anne's dementia got worse, and then I walked
around the house showing accommodations I made and describing the
techniques I used - they hope to use this material to produce a film for
training med students. We tried to arrange filming me taking care of
Jo-Anne, but we weren't able to schedule it in time. [I wondered
whether it was appropriate to film me taking care of Jo-Anne's personal
care, which involves nudity, for which I couldn't get functional assent
from her ... until I remembered that Jo-Anne spent many nights dancing
nude in one of her community-theater plays :-].

My heart is wounded, and my identities are scrambled: It's going to take
me a while to rebuild myself, with a lot more crying as part of the
process (I got a headache from crying the first day, so I've started
using the electrolyte sticks I used for Jo-Anne the last few weeks, as
her meals became more limited). But I'm otherwise in pretty good shape,
dealing with the myriad things that have to be dealt with, getting calls
and visits from loving friends and family, and using
computer-programming and movie-watching to take a break from my
emotional life (getting to sleep the night she died was hard: As I would
fall asleep a couple of times, I'd suddenly wake up with the realization
that my identities were shredded, it wasn't clear who I was anymore,
there was a Jo-Anne sized hole in my being).

I hope you're all doing better than me :-> But I'm doing pretty well,
all things considered. [I feel lucky that Jo-Anne taught me how to deal
with my emotional being; many of the best parts of me are from her,
she's a part of me.] I'm getting so many loving/supportive/affirming
visits/hugs, calls, and emails (which typically lead to little bits of
healthy crying ... a sort of episodic mini-therapy).

My two siblings each spent a week helping me declutter and downsize the
house a year ago. That will make it much easier for me to turn the
house from "our house" into "my house", the first part of building my
new life.

-scott

p.s. Feel free to share this email with anyone who remembers Jo-Anne, or
who is struggling with dementia in their family.



On 17 Aug 2019, at 3:53, George Sadowsky wrote:

I'm very sad to hear of Jo-Anne Scott's passing.  She was a good colleague and a good friend.

I first met Jo-Anne at a meeting in Palo Alto in September 1992, hosted by Steve From and Scott Weikert. A few months before that, I had discussed with Larry Landweber at INET'92 in Kobe the possibility of setting up a training program in Internet technology and use for people from developing countries. In the 1970s and 1980s, I worked for the United Nations and was involved in many technology transfer programs in the area of computing, and I had seen to my dismay the state of technical knowledge, education, and resources in most of the countries in which I had worked. Larry suggested giving it a try. Steve Fram was one of the early collaborators, and we were meeting in his office in Palo Alto to do the initial planning.

Jo-Anne  attended the meeting, I had not known her before, but her enthusiasm for the project and solving logistical aspects of making it happen were contagious, so we became the initial band of co-conspirators for what became ISOC's network technologies training program for people from developing countries.   Since INET'93  was planned  for San Francisco in August 1993, we decided to hold  the training workshop in the Silicon Valley just before the INET meeting, and then have the trainees participate also in that meeting. We believe that the latter step was important in introducing them to the people we hoped would be their future Internet colleagues and would assist them in the developments in their own countries.

At the time I was working at New York University and was not situated to assist in local preparation for the workshop.  Joanne lived in Palo Alto, and she believed that she could work with Stanford University to provide lodging, classroom space, and meals for the trainees and trainers during August 1993. She set about to do it with a vigor, enthusiasm, and initiative that characterized her contributions to the workshop for the next five years.. She convinced the University to provide dormitory space, meal arrangements,and suitable classroom space for the entire process, and she coordinated all of the preparatory work, including the  procurement,  delivery, and set up for a large number of personal computers to be used by the three training tracks. She also arranged for  several social events in the evenings to foster a sense of professional community among the attendees, as well as to meet local people who lived in the Palo Alto area. I remember her setting up a fireside chat with Vint Cerf one evening, which resulted in a spirited discussion of the potential of the Internet and the importance of what it could provide for development.

At the end of  INET' 93, Jo-Anne and I had dinner with the INET'94  conference chair, and after  reviewing the success of our workshop, we decided to do it again, a decision that was repeated  for several years after that. Although it may not have been clear to the workshop participants, the amount of logistical preparation  required to set up the Prague workshop in 1994 was immense. Only a few years had elapsed since the erosion of the iron curtain and the dissolution of the Soviet Union, and Czechoslovakia was in a rapid state of change. Joanne cooperated with the Czech Technical University to find space for housing in the Hotel Krystal, a tram ride away from the University buildings in which staff would be teaching the four tracks. The Hotel Krystal  even had a computer lab with 24  computers, connected to the Internet via a low-bandwidth permanent  connection. During the workshop, Jo-Anne learned that our Hotel Krystal had only been a hotel for a few years and before that it had been the training institute for the Czech secret police. We wondered how many microphones were still installed in various parts of the building, including the sleeping rooms.  Jo-Anne also discovered the "Chicago Pizza House"  (not a typo!)  in an underground warren near the hotel, where we went for relief several times to escape the rich Czech food offerings.

Jo-Anne  continued to participate actively in and support the workshop activities in 1995 in Honolulu, in 1996 in Montréal and in 1997 in Kuala Lumpur. In 1994 she discovered the local travel agent in Palo Alto, Maria Orvell, who worked with Joanne and together they became accomplished in  bringing people from all parts of the world to wherever the next INET meeting was going to be held.

The process of choosing and assisting participants to attend the workshops was extensive. Applications were solicited through a number of channels, including disseminating information by participants in formal workshops. These all came to Jo-Anne and she prepared them for evaluation by a committee consisting of the teaching staff for the next workshop. After that, the complex process of distributing the financial resources that we were able to obtain, ascertaining the possibility of visas and helping participants to obtain them (including making intercessions with the host country), and making flight arrangements, and this generally had to be performed individually for each participant. The logistics process took a lot of time andinitiative, and Joanne was able to do it, always in time to meet our deadlines.

Jo-Anne was a true partner. She embodied the spirit of the Internet, helping, sharing, supporting, and giving of herself so that others might learn and  in turn share with a new with others in their country. She believed strongly in the Internet's ability to help people in earlier stages of development, and she gave herself fully to the task. Many workshop participants saw her correctly as fundamental to the success of their experience. I'm glad that she lived long enough to observe the benefits of her contribution to global Internet development, but very sad that she was not able to continue to do so.  She will be missed.

George

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
George Sadowsky                                    Residence tel: +1.301.968.4325
8300 Burdette Road, Apt B-472                          Mobile: +1.202.415.1933
Bethesda MD  20817-2831  USA                                    Skype: sadowsky
george.sadowsky at gmail.com<mailto:george.sadowsky at gmail.com>                http://www.georgesadowsky.org/




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