Holiday Letter, 2020
Dec. 23, 2020
Holiday Letter, 2020
From Steve:
At the end of 2019 we were looking forward to a year filled with visitors, time spent outdoors in our desert home and enjoying friends. And the year did start out that way, with three sets of visitors in the early part of the year. The next set of visitors was scheduled to drive up from Tucson in mid-March to our home near Phoenix. But, as I’m sure all reading can imagine, that didn’t happen. Instead, we all began to shelter in place, buy masks and toilet paper, cleaning supplies and watch the news of what the spread of the pandemic meant for all of us. For Lil and me, it meant canceling some appointments, stopping our weekly visits to the nearby pool and then finding ourselves spending our time at home, pretty much canceling everything that involved interpersonal activities of any kind.
We live in an area where the numbers of those reported with the virus has moved from low to high to low to high again. And we find ourselves amongst many people who refuse to wear masks, so we pretty much stick to ourselves, ask anyone who does come in the house to wear masks and wear masks ourselves when we go outside.
In the midst of all this, we have managed to stay safe ourselves and many blessings have also appeared during this year. The rest of my letter will focus on those.
For many years we have periodically gotten groceries delivered. We moved to doing that all the time in the spring and in the process we met a woman Lil has called “our angel” who has been doing grocery shopping for us weekly. She delivers the groceries into our garage and then we haul it inside and put it away. Our contact is socially distanced and we all wear masks. We have also been fortunate to have neighbors and friends who have also offered to help us with periodic shopping. In this way, we have been protecting our late 60’s bodies.
Like probably all of you we have also been spending lots of time using social media. One of the many upsides of that for us has been more frequent contact with our grandchildren and their parents. Our grandson turns 13 next week and our granddaughter turned 10 in the fall. Both are more adept at social media than we are but they put up with us. Jaden, our grandson, is into sports and loves to have conversations about books and philosophical explorations. Ceci, our granddaughter, loves talking with Grammy (Lil) about make-up and baking, both from the point of views of the artist she is.
There have also been plenty of other social media opportunities. I have been interviewed several times about my disability and disability culture work. For anyone interested, one interview is at: https://www.youtube.com/watch?v=8YVnsj84vYI&feature=emb_logo
I also decided this year was a good time to return to some writing that had detoured a couple of years ago and began working on a book about disability culture. I’m hoping it moves beyond me to the outside world in 2021 as it is currently with a 3rd set of readers. One of the chapters in the book draft is about disability culture in this year and will be published in an upcoming issue of the Review of Disability Studies: An International Journal (https://rdsjournal.org/index.php/journal).
I have also continued with learning more about and practicing ReConnective Therapy (RCT). Information about RCT and my work with it can be found at: http://www.healinglightworkers.com/reconnective-therapy.html
On the family front, last January, my Aunt Jean, my mother’s sister, turned 100! She’s still doing well, reading and waiting to return to walking and exercising when she can. My Aunt Rosalie, my father’s sister turned 90 and watches lots and lots of movies. We communicate with both regularly as I also now do with my brother in Israel and my sister in Wisconsin via monthly social media calls.
Finally, but hardly least, I am most fortunate to be sheltering in place with my best friend and love of my life. It’s not that we get along 100% of the time, but 90% or so isn’t bad:) and we are grateful beyond measure that we like each other!
I know that not everyone has had an easy a time of it this year as we have and to all those reading I send loving, healing, peaceful energy and hope for a better 2021!
With light and love,
Steve
From Lil:
Hi friends. Hmm, a holiday letter. I've been procrastinating doing my part because it doesn't feel like a holiday this year. ... so, I've decided to write a gratitude letter. Looking back at the beginning of 2020, what comes to mind are friends. We started off the year with friends visiting us, and looking forward to many more in upcoming months. One couple got to enjoy our smoke detector batteries dying in the middle of the night and beeping for hours before we could get someone in to change them, and another friend got to relax by hanging all of our art for us - some 20+ pieces. She did a great job! None of us knew that within weeks we'd go to the store and find the toilet paper aisle at the market mysteriously empty, and talk of a virus in far away China rapidly reaching our shores. It turned the world upside down. Suddenly 2020 became the year of numbers. The problem with that is those numbers were about people's lives. They still are.
So, what to write about? Gratitude. I am so grateful for the people in my life. For me this year has been about peeling away the outer layers of my life, the outside activities, the flotsam and jetsam of everyday life, and coming to the most essential parts. The people. I am so thankful for the technology that makes it possible to connect with the people who make up the fabric of my life. I'm grateful for my friends that make getting up each day important. For neighbors that check in on us, or run errands for us, and friends we've made because of this pandemic. We live in a place where people mostly ignore safety protocol so our support circle is super important. We've had a shopping angel all year who started out being an Instacart employee and became our personal shopper and errand runner. She has kept us safe. I'm grateful for my friend I text with daily to check in with, my grandkids, who carry us around the house on their iPad while sharing their day with us, my sister, who always has something interesting to share, friends who have shared their efforts to move us into a country with a president that is human, friends who share their lives with us, and so, so much more.
I don't think it will come as a surprise that the person I'm most grateful for is Steve. This year of sheltering in place has put our life together under a microscope. We've come out well. I don't have words here. Steve is the wordsmith. I can only sum things up by saying he is the love of my life. He makes me laugh, sometimes makes me cry. He makes me think, and helps keep this fuzzy brain of mine somewhat in focus. He puts up with my cooking experiments - I'm smart enough to keep him well supplied in chocolate goodies! He is never boring, and I thank him for that.
I thank all of you for being in my life. For those of you on FB, thanks for putting up with all the photos I post. I started out posting them as a reminder that there is still beauty in our world in spite of what we've done to the environment. Then I realized how soothing the beauty of nature is for me especially when I'm stressed, and I wanted to share that in hopes that it would do the same for you. There is still a lot of beauty in our world, and each of you are a part of that. Thank You! Have a Happy Merry everyone! May the coming year give us all more room to breathe.
Love you, LIL
Holiday Letter, 2019
Dec. 23, 2019
About a year ago, we sent out a holiday letter. Lil asked if I’d be starting one again this year. I haven’t really known; it seems like it’s been a much less adventurous year—but maybe that’s not so terrible! Maybe, it’s also not true, just different kinds of adventures; well, let’s see.
We both continued with a Manifestation class, which included daily exercises and practices. In addition, I decided a few months ago, to add to my morning routine, reading a few pages of some kind of book related to my spiritual/energetic practices. I was able to do that because after the Spring 2019 semester, I retired from teaching at the U. of Hawaii (UH). I’d been doing online teaching for a long time and it was time to move on. I’m happy to say, though, that the 2 classes I created (one undergrad; one grad) live on with someone else teaching them.
It’s been about a year-and-a-half since we moved to Arizona and a little over a year we’ve been in our current house (and casita—small cottage). The house is lived in and comfortable, though there are still pictures to hang and Lil’s office to make the way she wants it to be! The casita is my office and has a small couch so I can do my ReConnective Therapy energy healing practice in person, though it has, for the most part, continued to be done remotely. One of the things I have done since retiring my from UH classes has been to expand this practice. For those who might want more information, there’s some at:
http://www.healinglightworkers.com/reconnective-therapy.html
The house we are in is part of an amazing neighborhood of about 3-4 blocks. Many years ago, a resident decided she wanted to meet the neighbors and invited them all to a potluck and that began a tradition of monthly potlucks. While the neighbor who began this tradition is no longer in the neighborhood, the potlucks continue and we’ve been fortunate to have participated in several. We also, without any knowledge on our part, moved into an area that is close to lots of activities, all within a 5 to 10 minute or less walk. This is possible, because in the spring we both got new wheelchairs. For me, it’s been probably about 10 years or so since I used a chair, but walking had become quite limited and painful, as had my driving, so it’s been a blessing having a motorized wheelchair. It’s allowed me (and both of us) to start going to an accessible pool about once a week and walk in water, which we both love (and miss this month, because the pool is being renovated). It also enabled me to join a Scrabble club, so I play every Monday morning. And the whole area is beautiful with waterfalls, fountains, small lakes, lots of green and lots of wildlife (in fact, in past couple of months I’ve seen about 10 coyotes!). When the weather is warm and sunny which it has been most of the time, we like to just sit outside, read, and people watch. In fact, we met a new friend in the spring, doing just that.
We’ve also had a few visitors. Last year about this time, Lil’s sister was here; as were a couple of Lil’s Canadian cousins. This coming year we will have more visitors, beginning (we think) next month.
Some of you may recall I was in Thailand last December. Global Campuses Foundation (GCF) [see: https://globalcampuses.org/] were the ones who got me there, along with Chiang Mai University. In the spring, our friends and colleagues, Jim & Sheryl, who founded Global Campuses Foundation, came to Arizona for a short visit. During that time the Institute on Disability Culture and GCF agreed to look for ways to work together in the future via a Memorandum of Understanding and we are discussing ways to do that. And as a reminder, the Institute website is: http://www.instituteondisabilityculture.org/
What we have not been able to do this year is visit in person with our grandchildren (and their parents!) who are still in Oklahoma. Thank goodness for technology, so that we can visit and keep in touch regularly. Well, if you’ve hung on this far, I simply want to say I hope we all have a better, kinder, healing 2020.
With light and love,
Steve
Hi Everyone! It’s time for me to add my two cents worth. This last year wasn’t full of big ticket items like the year before, but has been a year of growth nevertheless. I had wanted to focus on meeting new people and building community here in this past year, but got off to a slow start. Winter here was unusually cold last year, leaving people huddling indoors as much as possible. We had a short Spring, then bam! Summer hit with a vengeance. July had temps in the 118 degree range, followed by more of the same in August, with virtually no monsoon season to bring relief. I did not fare well in those temps, venturing out only in the early morning hours. Even then going to the store meant getting back in the car to 115 degree heat! September finally brought relief and people began to venture out of their homes again. It was like everyone was thirsting for social interaction, and we all began to go out and interact with others. We now have several neighbors we socialize with regularly, which is what I was hoping for this year. As I mentioned in last year’s letter, people are incredibly friendly around here. I even met a woman at the market the other day who has the same disability I do. We plan to get together. I still miss the disability community in Ca like crazy. I’ve also been missing Christmases of old. Sigh.
All in all, life is good. I’m still madly in love with Steve, which is a good thing. I would like to be able to beam myself around the planet, but I guess you can’t have everything. Know that no matter how things are here, I think of all the friends we’ve been blessed with all over this crazy planet of ours. Now if we can just get rid of that awful, evil man in Washington!
Have a Happy Merry everyone, and find joy in however you express yourself this season. Love, LIL
Holiday Letter, 2018
Dec. 23, 2018
Is it time for a holiday letter? I think it is. So, let’s see. Lil and I have had a rather busy year. We began the year with a sugar fast. Neither one of us were absolutist about this. We might have things with sugar in them, but no candy, baked goods, etc. This is not so easy when one of us (not me) is a superb baker! And, for me, no mochas. Horrors! But we made it til mid-year, then—well, more on that later.
We also joined two year-long classes. I participated in a one-year ReConnective Therapy (RCT) training program [for more on RCT see: http://www.healinglightworkers.com/reconnective-therapy.html] . This involved everyday exercises and practices, among many webinars, and one in-person class on beautiful Whidbey Island, off the Washington state coast. We both participated in a Manifestation class, which also included daily exercises and practices—so, apparently, we both felt the need for a busy year. But we weren’t done—hardly!
In the early part of the year, we learned that the chassis of our van was rusted out and ready to fall away. Yikes! We needed a new van. After many hours of contemplation, we arrived at our new (used) van for a perfect price.
During the spring, Lil and I spent a lot of time trying to find a way to stay in the Bay Area in an accessible, affordable house or apartment. We even tried to find someone else to live with to do this. But after lots of looking, nothing panned out (yes, for once making a long story short, not the other way around:)
So, as our lease was heading to expiration and our rents rising and our bodies not appreciating the cool, damp, Bay Area weather, we decided to pack up and move. Our friends, Linda and Bob, had moved not too long before to the Phoenix area and thought we’d really like it there. Linda and Lil have known each other since Lil was in 3rd grade. And the four of us had lived in Hawai‘i at the same time for a few years, so we were well aware of each other’s hopes for a place to live. We looked at houses and housing prices in the Sun City West area, near Phoenix, and were convinced. We made the decision to move in July, when our lease expired. So, we started packing up our rocks—with lots of help; left quite a few in the Bay Area to sell, and packed other stuff as well. Somehow (Lil laughing), I keep acquiring lots of books, for example, —and got ready to move. We had lots of help with this, including a friend gifting some packing for us. Then, we set the date, and our amazing friends, Bob and Linda flew up one morning and we got in our van and car and the 4 of us drove to their beautiful house, arriving just about on Lil’s July 13 birthday. We stayed there for 2 months, while we looked for, and then found a beautiful house (oh, yes, and this is when, and where our diets disappeared for the rest of the year…).
So, we have now exchanged our 2 bedroom apartment in El Cerrito, 20 feet from the BART trains, for a quiet 3 bedroom house in Surprise, AZ (yes, this is the name of the town, which is more a city, about 30 miles northwest of central Phoenix)! In addition to the bedrooms, there is a small casita (cottage), which has been converted to my office and from which I now write. We’re in an area called Sun City Grand, which is a retirement community and has many activities, some of which we hope to take advantage of in 2019! We’ve spent most of the time since we moved into this house in September unpacking and making it a home. We’re still renters, so we’ll see where the future takes us with this.
In the meantime, I’ve continued teaching online the 2 classes I created via the University of Hawaii Center on Disability Studies. This month, I finished, the final undergrad class I’ll teach and this spring, I’ll be teaching the grad course for the last time. While I’m happy to be finishing up with these semester long classes, I’m also glad that CDS is planning to continue the courses with a different instructor in Fall 2019. But I don’t think I’m done teaching yet. Since I don’t like talking about things before they are in place—stay tuned:)
So, one final thing for me. This month I had the privilege to travel to Chiang Mai in northern Thailand and deliver a keynote presentation on “Disability Culture: Past, Present, and Future,” at Conference co-sponsored by Chiang Mai University called, “Differently Abled: New Paradigms for Inclusive Higher Education (for everyone wondering about this title, I feel a blog on language coming in 2019). The other co-sponsor and facilitator of the conference, Global Campuses Foundation [see: globalcampuses.org/], were the ones who got me there. And this included also a lot of being pushed in a manual wheelchair, which a local vendor lent me for this trip. Lil and I are both working with this vendor to get new motorized wheelchairs. Hopefully, there will be an update on that in the 2019 letter!
Of course, much could be added to this letter, including how we are hoping to spend more time with our grandchildren in the future, exploring more of Arizona, books that have been read, TV shows and movies watched; and more escapades of one kind or another, but if you’ve read this far, I simply want to say that I hope we all have a better, kinder, healing 2019.
With light and love,
Steve
Ok, time for my two cents worth! It has been a wonderful year of manifesting what we need, with lots of twists and turns along the way. When we were looking to move from our El Cerrito apt with the BART tracks so close, and false alarms going off in the night, we were solely focused on living in the Bay Area. When that wasn't working out, and we were faced with renewing our lease for an exorbitant rate, our friends Linda and Bob came to the rescue. As Steve mentioned, they flew out and helped us drive to Az in 115 degree weather! As soon as we made the decision to move everything fell into place. As Steve mentioned, a dear friend gifted us the bulk of the packing up of the apartment. What a life saver that was! Then our amazing friend Nicole helped us catalog our rocks, and will be selling part of our collection for us. Don't worry, we've kept plenty of them.
Amazingly enough Linda and Bob are still speaking with us after having us as house guests for two months. As Steve said, we found a lovely house to rent that not only has an office for Steve, but one for me! It also has a guest room and a washer and dryer, which makes me very happy. I know, this is fascinating, isn't it? It makes for a perfect setting for visitors, hint, hint.
One thing that has been amazing, is finding friends here from elsewhere in our lives. Not only Linda and Bob, but I found that a friend I met in the 80's now lives here, and a friend from our NM days is living in Phoenix. Our neighborhood has a monthly potluck, which us a great way to meet our neighbors, and a cousin from Canada and her partner are snowbirds and are staying nearby until March.
Ok, I think I've gone on long enough here. For me the move here was a good example of manifesting exactly what we needed - warmth, a quiet place to live, access and affordability. People here are incredibly friendly, which I love. The hard part is missing our friends and the disability community in the Berkeley area. That's a bit of a heartbreaker. Hopefully we will be able to visit the Bay Area occasionally.
It's been an eventful year, full of surprises and new adventures. That's one thing I realized early on in our relationship - that being with Steve was an adventure. Coming up on almost 27 years of being together, it still holds through and shows no signs of stopping. YAY!
Wishing you all a holiday season of your dreams, and a joyous new year! Love, LIL
Holiday Letter, 2016
Holiday Letter 2016: The Year in Review; or, How I Spent 2016 on Planes, (NO) Trains, Automobiles, Wheelchairs, and more Automobiles…
Dear Loved Ones, Friends, and anyone else reading this Holiday missive:
Yesterday, I penned--well, if I’d done it that way, it would be much, much shorter—and no one would be able to read it, but I digress…anyway, yesterday, I wrote the first version, presented it to Lil, who did not respond with wonderment, so I’m trying again, adding a little more (I hope) pizazz. Plus, I’d forgotten a few important things, like the most important event (outside our personal lives) of 2016: THE CUBS WON THE WORLD SERIES FOR THE FIRST TIME IN 108 YEARS! 108 YEARS! THE CUBS WON THE WORLD SERIES!!!! And I watched, and watched, and watched, and at the end, smiled mightily and fondly recalled my days in the late 60s and early 70s when I’d at times get to be a Wrigley Field Bleacher Bum--so thanks Cubs!
In the meantime, lots of other stuff happened this intense, frustrating, and exciting year. I’m sure Lil would write different stuff, but she’s not the one writing this, so….onward:
As 2015 ended, I’d just finished up teaching another semester of the course I created several years ago, called “Disability History and Culture: From Homer to Hip Hop.” It has been a wonderful success, increasing from the first semester, when I taught an in-person course of about half a dozen students in Honolulu to (both undergrad and grad) online courses I teach from our new (since 2014, for those who’ve missed this:) home in the California Bay Area (Oakland side) 20 students this semester in 2 sections of the undergrad class. I teach a smaller grad version of the course in the summer (see http://www.cds.hawaii.edu/certificates/course-descriptions).
In the fall of 2015, I began conducting trainings in emergency preparation. Called “Whole Community Planning,” (see http://www.bcfsemd.org/) two trainers—one with expertise and experience in emergency management, and me with my disability perspective. These trainings took me from southern California to the east coast. In January of this year, I girded my weather-sensitive body and traveled to Connecticut, where I got to get together with my friend Candace, who I worked with at the CIL in Norman, OK in the late 1980s.
At the beginning of this year, we also planned to look at the Institute on Disability Culture (http://www.instituteondisabilityculture.org/) and see how we might want to move it (and ourselves) into the future. That didn’t quite happen, because….first,
In mid-March, my Mother passed on. This transition had been a long time coming, as she’d been living with Alzheimer’s for many years. She (and my family) had the great, good fortune to have my sister and her partner nearby while she lived first in an apartment, then eventually in a Memory Care unit in Madison. My siblings and I met traveled to Madison about a year before she passed, which was the first time we’d all been together in about 7 years. The three of us gathered again, along with my daughter, and a couple cousins, in Tucson, where my Mom was laid to rest next to my father. My memories of my mother recently started returning to her younger days, when she was physically active, social, loved to play Bridge, was involved in lots of community activities and a world traveler. I think the most fun of her jobs was working at a travel agency in the days when travel agents visited lots of the places their clients went. She, and my dad, had the opportunity to see many places around the world. They loved this and all three of us kids got the travel bug from an early age--and it’s still being passed on—as you shall see.
About a week later, while training in Rhode Island, I learned Lil had taken a bad fall…Our friend Ann, joined Lil at the emergency room, and stayed with Lil until she got a room. When I returned from the east, I learned that not only did Lil have breaks in her leg in 2 places, above and below her left knee (or her good leg, as she said), but she also had pneumonia (she had no inkling of that) and a high fever. The surgeon couldn’t operate, which he needed to do, until her fever broke.
In the first days of being in the hospital, friends and family came through in amazing ways, visiting often, and setting up an internet support system on a site called Lotsa Helping Hands. This became an invaluable tool.
A week later, Lil did get this surgery, which was a success. After another week, Lil was ready to move to a Skilled Nursing Facility (SNF or nursing home), which led to a frantic search. We found one in the Fruitvale section of Oakland (for those who know the area) and in early April the ambulance transported Lil there.
For the next three months, while Lil was at the SNF, she worked hard, lucked out with a great roommate, and had an amazing amount of support, outpouring of love, and visitors, from as far away as Hawaii and Canada. Many things occurred as a result of Lil’s stay in the SNF, including healing (the most important part), frustrations (naturally), including malfunctioning wheelchairs (a long—and still ongoing story, which hopefully will end in 2017!), and making new friends.
During this time, I girded myself to (finally) drive on the Bay Area highways, which was the most direct way to get to see her. I did learn the highway relatively quickly; unfortunately, my body began to remind me why I don’t drive this way, as my left hip and right knee both began to ache. Soon, I asked friends to drive me. And again they came through quickly and with a lot of support.
In May, I headed to Honolulu for Pac Rim (http://www.pacrim.hawaii.edu/), where I had the pleasure of introducing and co-presenting with our friends, Jim and Sheryl Tewksbury about their innovative Global Campuses Foundation (http://globalcampuses.org/) briefly summed up as <everyone has knowledge to share and that lifelong learning is an empowering process that builds connection, friendship and self-esteem>.
Within a couple of weeks after returning from Hawaii, I got up—well, I tried—to get up from a chair at the SNF, when my left leg didn’t cooperate Our friend, Gwyn, had driven that day—which turned out to be critical. By the time, we got to our apartment complex, I couldn't put weight on my left leg. I asked to get my cane. She did and I took some steps and made it to a fence and then stopped and asked her to get one of Lil’s motorized wheelchairs. It was Gwyn’s first experience driving a motorized wheelchair and she learned why it takes some practice:).
That began several months for me of off and on wheelchair and cane use. It also meant getting to the SNF primarily with vans (thank you Daniel and Celia; and Eric and Mary Lee!).
[For those of you who know about the ReConnective Therapy energy work I’ve been doing, I did get help from energy healers (especially, thank you Herwig!) (http://www.healinglightworkers.com/). I also learned later that the pain in my left leg had been a break...maybe more of this story at a later date…]
In the meantime (and perhaps now it’s clearer why I haven’t written as much this year) Lil came home in early July, just in time to celebrate her 65th birthday! She moved gingerly and slowly, but despite her sometimes thinking she wasn’t doing much, from my vantage she worked hard, continuing with PT and OT for several weeks while at home and moving more every day. Now she’s driving, baking, making dinner, and showing her sparkling eyes more often than a few months ago.
While all this was happening, in fact when Lil was in the hospital I’d received an invitation to keynote a conference on Disability Culture and art in Taiwan in late summer. Naturally, I hoped to be able to go. In fact, after a couple of months (shows where my head was at), I realized the title of the conference, “We Are Who We Are: See Our Precious Disability Culture” emulated the title of one of my early essays about Disability Culture, “We Are Who We Are…So Who Are We?” (reprinted in “Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride”-https://www.amazon.com/Movie-Stars-Sensuous-Scars-Disability/dp/0595288936). After a lots of contemplation, Lil and I decided I should go. But I was still moving gingerly, after the break in my leg. We realized I needed a Personal Assistant and decided to ask Aimée, my daughter, if she’d be interested in doing this and she was excited about the opportunity. So, in late August, with some trepidation, she left her family in Oklahoma, came here, and we flew from San Francisco to Taipei. The Conference was great, we ate delicious foods, made many new friends, saw old ones, and learned a lot about what is going on in Taiwan from a disability arts and culture perspectives. And we ate really well! Many pictures are on my Facebook page. And being able to travel with Aimée was a highlight. And, fortunately, she spent a couple days with Lil and me after we got back (thanks David, Jaden and Cecilia for sharing your wife and mother with us!:)
The less than thrilling news is that a few days later my legs started bothering me (perhaps from scrunching myself into wheelchairs made for people with much shorter legs). I committed to no travel for the remainder of 2016. This was tested in late October when my 91 year-old uncle, in Michigan, unexpectedly passed on. Uncle Marv was a dear, sweet, generous man, who lived in the same town I grew up in, so I saw him often when I was younger. As an adult I visited once in a great while. I recall visiting my aunt and uncle when Uncle Marv was in his 80s. My sister and I were talking with him and I asked why he continued to work. He said, while he didn’t have to, he wanted to go into the office every day he could. One reason he gave for that was that he believed older folks who remained active did better, both physically and mentally. And he continued on until his late 80s, going each day into the office of the business he built. I really did want to be at the funeral service, but my body said stay home, so I did. Fortunately, Barb and Jane traveled from Madison to be there. Thank you both!
Every time I think about this past year, I recall something else. This time, it’s that after several years of work, a book I co-edited was released. It’s called “Rethinking Disability: World Perspectives in Culture and Society.” (https://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=dp_byline_cont_pop_book_1)
Now,2016 is coming to a close and I look forward to a different kind of 2017. This past year has been one of lots of loss, not only my Mother and uncle, but too many people in our disability community; change, including both Lil and I turning 65 and dealing with our bodies in ways we haven’t for a long time; and frustrations with our political and social systems. But, in 2016, I also read great books, including finding the wonderfully comic books of Jonas Jonasson, beginning with the “One Year Old Man Who Climbed Out a Window and Disappeared;” supplementing my (not enough) knowledge of ancient and medieval disability history; always finding new music (though none is coming to mind this second); and enjoying movies (just saw “East Side Sushi,” and really enjoyed it—the story actually took place not far from the SNF Lil was in) and continued to learn from my students and from the increasing numbers of people the world over who are contributing to Disability Culture.
In 2017, I look forward to Lil and I both being healthier, a little bit of travel, working with my friends, taking a look at how the Institute can move forward, getting back to more writing, and spending some great quality time with Lil and if the stars align with our grandkids and their family.
Wishing all who are reading this love, light & joy; prosperity and abundance; and healing and wellness,
And now an Addendum from the lovely Lil:
Hi folks, I don't really have much to add, but you know me, I have to get my two cents worth in. My seemingly singular event of 2016 was, and is, my fall. As Steve wrote, I managed to wait until Steve went out of town to pull this stunt. I'm still not exactly sure what happened. I got up around six am to use the bathroom and to take my morning meds. I went to stand up using the walker and the next thing I knew it was sliding out from under me sideways, and I was going down. Somehow I was surprised to learn hours later that I'd broken my leg in two places And I had pneumonia! Thankfully my friend Ann came to the emergency room to be with me. That was the beginning of the year of things to be thankful for. Within 24 hours of my fall friends had set up a website for people to sign up to visit me and do whatever needed to be done to support Steve and I. 26 people signed up immediately. So many more bypassed the website. Friends not only signed up, they came through repeatedly.
It's only in hindsight that I realize how drugged I was in that time. I vaguely remember telling people I wasn't remembering things, only to be told that I seemed lucid. What I do remember is friends taking notes of what doctors and nurses said so I didn't have to try to hold conversations in my head. I remember my sister keeping me supplied with supplements to help me heal. I remember her posting on FB that people shouldn't give me chocolate, as it would slow down my healing. I remember friends keeping me well supplied in chocolate. I remember friends helping me have conversations with the surgeon about the best way to immobilize my leg until surgery could be done. I remember the staff at the hospital and the SNF saying they couldn't believe the sheer number of visitors I had. I remember friends bringing me food from the outside world so I wouldn't have to eat so much institutional food. I remember friends making food at home and bringing it to me. Such an act of love. I remember gift baskets filled with delicious goodies to munch on and share with visitors. How did I manage to lose weight??? I remember going to the OR for surgery, and Steve and I talking with the man who was transporting me. He is from Eritrea, and we had a wonderful conversation about a woman from his country he once heard speak. It turns out she's a friend of ours; a woman who is Deaf/Blind and is an attorney who has been to the White House to meet Obama. I remember visitors. So many visitors. Friends from Hawaii! Friends on their way from Hawaii to their new home in NY. I remember two of my cousins from Canada surprising me with a visit. I remember friends spilling into the hallway because there was no more room left in my room for everyone to fit. I remember friends meeting each other and creating new friendships of their own. I remember friends coming to see me on the turn of a dime when I had questions about my rights. I remember my surgeon who I'd just met, and how the universe provides. My orthopedist in the '80's who had died suddenly was the mentor of my surgeon in 2016. We became friends. I remember conversations with him about the best approach to repairing the damage. It took a steel plate, 11 pins and 2 screws, and it worked! I remember that one of my biggest fears being that I'd end up in a nursing home one day. I remember going into the nursing home to find that the universe had gifted me with an amazing roommate who became my friend. I remember being gifted with "Certified Nursing Assistants" who took care of me there, who made my stay easier. I remember thinking 3 1/2 months wasn't so bad. I remember PT staff who became my friends and gave me homemade going away gifts when I left. I remember coming home, and thinking it was a mistake, that it was too soon, too hard. I remember the love of my life, encouraging me, loving me. This has been the hardest year of my life. I'm still not 100% back to the way I was. I may not ever get there. There are scars, but my husband reminds me that they are a map of my journey, and something to be thankful for. I remember.
I guess I did have things to say. Thank you everyone!
Love,
Steve & Lil
Holiday Letter 2016: The Year in Review; or, How I Spent 2016 on Planes, (NO) Trains, Automobiles, Wheelchairs, and more Automobiles…
Dear Loved Ones, Friends, and anyone else reading this Holiday missive:
Yesterday, I penned--well, if I’d done it that way, it would be much, much shorter—and no one would be able to read it, but I digress…anyway, yesterday, I wrote the first version, presented it to Lil, who did not respond with wonderment, so I’m trying again, adding a little more (I hope) pizazz. Plus, I’d forgotten a few important things, like the most important event (outside our personal lives) of 2016: THE CUBS WON THE WORLD SERIES FOR THE FIRST TIME IN 108 YEARS! 108 YEARS! THE CUBS WON THE WORLD SERIES!!!! And I watched, and watched, and watched, and at the end, smiled mightily and fondly recalled my days in the late 60s and early 70s when I’d at times get to be a Wrigley Field Bleacher Bum--so thanks Cubs!
In the meantime, lots of other stuff happened this intense, frustrating, and exciting year. I’m sure Lil would write different stuff, but she’s not the one writing this, so….onward:
As 2015 ended, I’d just finished up teaching another semester of the course I created several years ago, called “Disability History and Culture: From Homer to Hip Hop.” It has been a wonderful success, increasing from the first semester, when I taught an in-person course of about half a dozen students in Honolulu to (both undergrad and grad) online courses I teach from our new (since 2014, for those who’ve missed this:) home in the California Bay Area (Oakland side) 20 students this semester in 2 sections of the undergrad class. I teach a smaller grad version of the course in the summer (see http://www.cds.hawaii.edu/certificates/course-descriptions).
In the fall of 2015, I began conducting trainings in emergency preparation. Called “Whole Community Planning,” (see http://www.bcfsemd.org/) two trainers—one with expertise and experience in emergency management, and me with my disability perspective. These trainings took me from southern California to the east coast. In January of this year, I girded my weather-sensitive body and traveled to Connecticut, where I got to get together with my friend Candace, who I worked with at the CIL in Norman, OK in the late 1980s.
At the beginning of this year, we also planned to look at the Institute on Disability Culture (http://www.instituteondisabilityculture.org/) and see how we might want to move it (and ourselves) into the future. That didn’t quite happen, because….first,
In mid-March, my Mother passed on. This transition had been a long time coming, as she’d been living with Alzheimer’s for many years. She (and my family) had the great, good fortune to have my sister and her partner nearby while she lived first in an apartment, then eventually in a Memory Care unit in Madison. My siblings and I met traveled to Madison about a year before she passed, which was the first time we’d all been together in about 7 years. The three of us gathered again, along with my daughter, and a couple cousins, in Tucson, where my Mom was laid to rest next to my father. My memories of my mother recently started returning to her younger days, when she was physically active, social, loved to play Bridge, was involved in lots of community activities and a world traveler. I think the most fun of her jobs was working at a travel agency in the days when travel agents visited lots of the places their clients went. She, and my dad, had the opportunity to see many places around the world. They loved this and all three of us kids got the travel bug from an early age--and it’s still being passed on—as you shall see.
About a week later, while training in Rhode Island, I learned Lil had taken a bad fall…Our friend Ann, joined Lil at the emergency room, and stayed with Lil until she got a room. When I returned from the east, I learned that not only did Lil have breaks in her leg in 2 places, above and below her left knee (or her good leg, as she said), but she also had pneumonia (she had no inkling of that) and a high fever. The surgeon couldn’t operate, which he needed to do, until her fever broke.
In the first days of being in the hospital, friends and family came through in amazing ways, visiting often, and setting up an internet support system on a site called Lotsa Helping Hands. This became an invaluable tool.
A week later, Lil did get this surgery, which was a success. After another week, Lil was ready to move to a Skilled Nursing Facility (SNF or nursing home), which led to a frantic search. We found one in the Fruitvale section of Oakland (for those who know the area) and in early April the ambulance transported Lil there.
For the next three months, while Lil was at the SNF, she worked hard, lucked out with a great roommate, and had an amazing amount of support, outpouring of love, and visitors, from as far away as Hawaii and Canada. Many things occurred as a result of Lil’s stay in the SNF, including healing (the most important part), frustrations (naturally), including malfunctioning wheelchairs (a long—and still ongoing story, which hopefully will end in 2017!), and making new friends.
During this time, I girded myself to (finally) drive on the Bay Area highways, which was the most direct way to get to see her. I did learn the highway relatively quickly; unfortunately, my body began to remind me why I don’t drive this way, as my left hip and right knee both began to ache. Soon, I asked friends to drive me. And again they came through quickly and with a lot of support.
In May, I headed to Honolulu for Pac Rim (http://www.pacrim.hawaii.edu/), where I had the pleasure of introducing and co-presenting with our friends, Jim and Sheryl Tewksbury about their innovative Global Campuses Foundation (http://globalcampuses.org/) briefly summed up as <everyone has knowledge to share and that lifelong learning is an empowering process that builds connection, friendship and self-esteem>.
Within a couple of weeks after returning from Hawaii, I got up—well, I tried—to get up from a chair at the SNF, when my left leg didn’t cooperate Our friend, Gwyn, had driven that day—which turned out to be critical. By the time, we got to our apartment complex, I couldn't put weight on my left leg. I asked to get my cane. She did and I took some steps and made it to a fence and then stopped and asked her to get one of Lil’s motorized wheelchairs. It was Gwyn’s first experience driving a motorized wheelchair and she learned why it takes some practice:).
That began several months for me of off and on wheelchair and cane use. It also meant getting to the SNF primarily with vans (thank you Daniel and Celia; and Eric and Mary Lee!).
[For those of you who know about the ReConnective Therapy energy work I’ve been doing, I did get help from energy healers (especially, thank you Herwig!) (http://www.healinglightworkers.com/). I also learned later that the pain in my left leg had been a break...maybe more of this story at a later date…]
In the meantime (and perhaps now it’s clearer why I haven’t written as much this year) Lil came home in early July, just in time to celebrate her 65th birthday! She moved gingerly and slowly, but despite her sometimes thinking she wasn’t doing much, from my vantage she worked hard, continuing with PT and OT for several weeks while at home and moving more every day. Now she’s driving, baking, making dinner, and showing her sparkling eyes more often than a few months ago.
While all this was happening, in fact when Lil was in the hospital I’d received an invitation to keynote a conference on Disability Culture and art in Taiwan in late summer. Naturally, I hoped to be able to go. In fact, after a couple of months (shows where my head was at), I realized the title of the conference, “We Are Who We Are: See Our Precious Disability Culture” emulated the title of one of my early essays about Disability Culture, “We Are Who We Are…So Who Are We?” (reprinted in “Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride”-https://www.amazon.com/Movie-Stars-Sensuous-Scars-Disability/dp/0595288936). After a lots of contemplation, Lil and I decided I should go. But I was still moving gingerly, after the break in my leg. We realized I needed a Personal Assistant and decided to ask Aimée, my daughter, if she’d be interested in doing this and she was excited about the opportunity. So, in late August, with some trepidation, she left her family in Oklahoma, came here, and we flew from San Francisco to Taipei. The Conference was great, we ate delicious foods, made many new friends, saw old ones, and learned a lot about what is going on in Taiwan from a disability arts and culture perspectives. And we ate really well! Many pictures are on my Facebook page. And being able to travel with Aimée was a highlight. And, fortunately, she spent a couple days with Lil and me after we got back (thanks David, Jaden and Cecilia for sharing your wife and mother with us!:)
The less than thrilling news is that a few days later my legs started bothering me (perhaps from scrunching myself into wheelchairs made for people with much shorter legs). I committed to no travel for the remainder of 2016. This was tested in late October when my 91 year-old uncle, in Michigan, unexpectedly passed on. Uncle Marv was a dear, sweet, generous man, who lived in the same town I grew up in, so I saw him often when I was younger. As an adult I visited once in a great while. I recall visiting my aunt and uncle when Uncle Marv was in his 80s. My sister and I were talking with him and I asked why he continued to work. He said, while he didn’t have to, he wanted to go into the office every day he could. One reason he gave for that was that he believed older folks who remained active did better, both physically and mentally. And he continued on until his late 80s, going each day into the office of the business he built. I really did want to be at the funeral service, but my body said stay home, so I did. Fortunately, Barb and Jane traveled from Madison to be there. Thank you both!
Every time I think about this past year, I recall something else. This time, it’s that after several years of work, a book I co-edited was released. It’s called “Rethinking Disability: World Perspectives in Culture and Society.” (https://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=dp_byline_cont_pop_book_1)
Now,2016 is coming to a close and I look forward to a different kind of 2017. This past year has been one of lots of loss, not only my Mother and uncle, but too many people in our disability community; change, including both Lil and I turning 65 and dealing with our bodies in ways we haven’t for a long time; and frustrations with our political and social systems. But, in 2016, I also read great books, including finding the wonderfully comic books of Jonas Jonasson, beginning with the “One Year Old Man Who Climbed Out a Window and Disappeared;” supplementing my (not enough) knowledge of ancient and medieval disability history; always finding new music (though none is coming to mind this second); and enjoying movies (just saw “East Side Sushi,” and really enjoyed it—the story actually took place not far from the SNF Lil was in) and continued to learn from my students and from the increasing numbers of people the world over who are contributing to Disability Culture.
In 2017, I look forward to Lil and I both being healthier, a little bit of travel, working with my friends, taking a look at how the Institute can move forward, getting back to more writing, and spending some great quality time with Lil and if the stars align with our grandkids and their family.
Wishing all who are reading this love, light & joy; prosperity and abundance; and healing and wellness,
And now an Addendum from the lovely Lil:
Hi folks, I don't really have much to add, but you know me, I have to get my two cents worth in. My seemingly singular event of 2016 was, and is, my fall. As Steve wrote, I managed to wait until Steve went out of town to pull this stunt. I'm still not exactly sure what happened. I got up around six am to use the bathroom and to take my morning meds. I went to stand up using the walker and the next thing I knew it was sliding out from under me sideways, and I was going down. Somehow I was surprised to learn hours later that I'd broken my leg in two places And I had pneumonia! Thankfully my friend Ann came to the emergency room to be with me. That was the beginning of the year of things to be thankful for. Within 24 hours of my fall friends had set up a website for people to sign up to visit me and do whatever needed to be done to support Steve and I. 26 people signed up immediately. So many more bypassed the website. Friends not only signed up, they came through repeatedly.
It's only in hindsight that I realize how drugged I was in that time. I vaguely remember telling people I wasn't remembering things, only to be told that I seemed lucid. What I do remember is friends taking notes of what doctors and nurses said so I didn't have to try to hold conversations in my head. I remember my sister keeping me supplied with supplements to help me heal. I remember her posting on FB that people shouldn't give me chocolate, as it would slow down my healing. I remember friends keeping me well supplied in chocolate. I remember friends helping me have conversations with the surgeon about the best way to immobilize my leg until surgery could be done. I remember the staff at the hospital and the SNF saying they couldn't believe the sheer number of visitors I had. I remember friends bringing me food from the outside world so I wouldn't have to eat so much institutional food. I remember friends making food at home and bringing it to me. Such an act of love. I remember gift baskets filled with delicious goodies to munch on and share with visitors. How did I manage to lose weight??? I remember going to the OR for surgery, and Steve and I talking with the man who was transporting me. He is from Eritrea, and we had a wonderful conversation about a woman from his country he once heard speak. It turns out she's a friend of ours; a woman who is Deaf/Blind and is an attorney who has been to the White House to meet Obama. I remember visitors. So many visitors. Friends from Hawaii! Friends on their way from Hawaii to their new home in NY. I remember two of my cousins from Canada surprising me with a visit. I remember friends spilling into the hallway because there was no more room left in my room for everyone to fit. I remember friends meeting each other and creating new friendships of their own. I remember friends coming to see me on the turn of a dime when I had questions about my rights. I remember my surgeon who I'd just met, and how the universe provides. My orthopedist in the '80's who had died suddenly was the mentor of my surgeon in 2016. We became friends. I remember conversations with him about the best approach to repairing the damage. It took a steel plate, 11 pins and 2 screws, and it worked! I remember that one of my biggest fears being that I'd end up in a nursing home one day. I remember going into the nursing home to find that the universe had gifted me with an amazing roommate who became my friend. I remember being gifted with "Certified Nursing Assistants" who took care of me there, who made my stay easier. I remember thinking 3 1/2 months wasn't so bad. I remember PT staff who became my friends and gave me homemade going away gifts when I left. I remember coming home, and thinking it was a mistake, that it was too soon, too hard. I remember the love of my life, encouraging me, loving me. This has been the hardest year of my life. I'm still not 100% back to the way I was. I may not ever get there. There are scars, but my husband reminds me that they are a map of my journey, and something to be thankful for. I remember.
I guess I did have things to say. Thank you everyone!
Love,
Steve & Lil
