[governance] Jo-Anne Scott remembered

[Carlos Afonso (via governance Mailing List)]

Dear Paul & all, words fail me on this. Read all the memoirs Enzo,
Peter, George and others brought to the list with emotion.

I will write Scott right now.

fraternal regards

--c.a.

On 16/08/2019 20:38, Paul Wilson wrote:
> 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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-- 

Carlos A. Afonso
[emails são pessoais exceto quando explicitamente indicado em contrário]
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Instituto Nupef - https://nupef.org.br
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