From Steve:
How to write about 2022? The years have merged since early 2020—with responses to Covid; too many people leaving the planet, including some of our best friends. At the end of 2021 our friend Linda, who’d Lil met when she was in 3rd grade and who, with her husband, enticed us to move to where we now live, was in the hospital and she transitioned off the planet in early January of this year. With all this going on, and our grief, we couldn’t bring ourselves to write a Holiday Letter for 2021. But as they say life marches on and in our case our lives dramatically changed early this year.
On March 9, Lil and I got ready for our 6 months dental appointments. Lil got in the van. She’s the driver. I was getting ready to join her but when I reached for the passenger door, I missed. And then I lost my balance, or my sandals got caught on each other—or something, don’t; really know—and I fell on the concrete garage floor. Immediately, I knew I’d damaged my left arm. I felt the shock of the fall and I couldn’t put any weight on it to try and get up. Lil called 911. Firefighters arrived first. They were getting ready to transfer me to a stretcher and when one of the firemen moved me my right leg screamed with pain more intense than my left arm. Then, the ambulance arrived and they took me to a nearby emergency room. Some of you know I’ve had a history of broken bones since I was diagnosed with Gaucher disease in the 1950s. Most have been hairline fractures but this was more serious. The following day I had surgery on my right leg, to repair the broken femur, which also included insertion of a rod to bolster the bone. I did not have surgery on my left arm, where the humerus, or long bone, broke between my shoulder and elbow. No one remembers exactly why no surgery there. It may well have been I declined because the thought of having surgery on both sides of my body was too much. But it might have been something else. Between pain and drugs, I certainly don’t recall.
One of the worst aspects of this time was that Aimée and David and the grandkids were scheduled to arrive for a week the weekend after I fell. They still did, but I don’t recall much of the visit. I was transferred a day or so after the surgery to a “rehabilitation facility.” My experiences there could be a separate letter, but I won’t do that to any of you. Suffice it to say it wasn’t the best of experiences. I was there 2-3 weeks, mostly because I had a stubborn UTI. Once that cleared up, I was transferred to a group home or assisted living facility. Before I left the rehabilitation facility, my sister, Barb and partner Jane who had also planned to visit and didn’t change their plans arrived. I don’t recall a lot of their visit, but one thing I do recall was Jane helping me to finish filing our tax return. A big relief! And, finally (I think—there’s a good possibility I’m forgetting something:), Lil’s sister Jessica came from the Bay Area in CA shortly after I fell and stayed several months helping out.
Back to the group home: At this facility there were about 5 other residents. At my first meal—dinner–the night of my arrival, I got to the table and said “Hi, I’m Steve.” Absolute silence. Literally. Then, one of the people who worked there said, “they don’t say much.” That was an understatement. We shared 3 meals a day at that table and no one (99% accurate) talked, except the several people who worked at the facility. Thank goodness for them—I think they saved my sanity because they’d engage and converse with me.
During the time I transitioned from the “rehabilitation: facility to the group home, our friend Kerstin Schoen, arrived to visit. She was really supportive during the transition and she provided lots of ReConnective Therapy (RCT) healing work. She had become the primary teacher of RCT when her husband, and our friend, Herwig, transitioned pre-pandemic.
At the group home, there were 3, usually high quality, meals a day—eaten in silence. But there wasn’t a lot to do and the goal was to have us all in our beds around 6 so all but the night person of the staff could go home. I lucky, though, to have many visitors while I was there, and many more friends and relatives who were in regular contact. Our house was about 15 minutes drive from the group home, and Lil visited most days. She brought, besides her smiling self, popcorn and Jr. Mints, and other treats and necessities. Our friends, Jim and Sherry Tewksbury, who founded Global Campuses Foundation (https://www.globalcampuses.org/) in both the U.S. and Thailand, spent winter, 2021-22 in Bisbee, AZ, visited and stayed with Lil for a week or so, coming to the group home most days.
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In late May, I returned home to a hospital bed in the living room, which I’m still sleeping in….I had some (not a lot) of Physical Therapy and Occupational Therapy. I also began with personal care assistants 8 hours a day; 4 in the morning, 4 at night. Aside from the expenses (our insurance does not cover this) it quickly became clear I didn’t need all 4 hours, especially at night. But I did need at least 1 hour and the companies that provide the service have a 4 hour minimum. After a month or so I stopped the evening PCAs, but unfortunately that put more work on Lil for preparing nighttime food and other activities. A few months later, I did the same thing with the morning PCAs. We’re lucky to have great neighbors and friends who have helped out. We also began working with someone who comes in twice a week, does grocery shopping, laundry, helps cook and much more. As it turns out, her husband is a wonderful handyman and he’s also been great at helping fix and maintain things in the house.
In the late summer or fall, I returned to work, providing ReConnective Therapy (RCT) with all the people I worked with prior to the accident. Information about RCT and my work with it can be found at: http://www.healinglightworkers.com/reconnective-therapy.html
I also returned to working on my book on Disability Culture, which I’m looking at various ways of getting out into the world in 2023!
All was moving forward, and on track, though much too slowly for me. In fact, I even had a gig, doing a presentation with a group in Texas (via Zoom of course) in late October. On my 71st birthday, the day of the presentation, Lil had a dr. appointment in Phoenix to have an orthopedist look at her left knee, which has become more unstable over the years. I finished my presentation, went to the kitchen to get something to eat, and saw a text from Lil that she’d broken her leg in the doctor’s office. She will have to, if she wants, to tell the story of how that happened. It remains a bit unclear to me but has to do with getting an X-ray. Anyway, the immediate result was she had surgery the next day to bolster the lower left leg where the break occurred. A few days later she moved to a (different than where I was) rehabilitation facility (all in Phoenix, an hour’s drive away—if I were driving…) Lil was in the rehabilitation facility about two weeks, then returned home. My sister came out and helped us both for a couple of weeks, before and after Lil came home. She was great but returned to her home the day before Thanksgiving.
Lil is doing amazingly—seems to me her progress is much faster than mine. The harder parts at the moment, are sleeping arrangements and the kitchen which was designed for two people using wheelchairs. Our landlady (and next door neighbor) has been great about letting us change and adapt things, but there’s not that much we can do with the kitchen. The hardest part, though, remains transportation. We started looking into how we might use and acquire a new (at least to us) van that could accommodate 2 wheelchairs, before any of this happened. But now, neither one of us can drive our van. About a year ago, we looked at a minivan that could accommodate our 2 chairs—barely—but that seems to be all that’s out there now. As far as we can tell, larger vans are no longer made to accommodate 2 chairs. So, in the process of all this, we realized we’re looking at about $100,000 for a van that can work for us. Our friend, Pat, suggested and then started a GoFundMe campaign to raise funds for a van and we’re about 25% there. Many, if not all, of you, have heard or seen information about this. But here it is once again—please feel to share with your networks, friends, colleagues, acquaintances, etc. Thank you!
Just this morning, I realized that 2023 will be a year when I focus on writing. I have some ideas for getting my book on Disability Culture into the world next year, so you’ll hear from me then. And I have some ideas for more writing as well. So, look for more from me before too long.
With light and love,
Steve
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From Lil:
Well, it seems it’s my turn to put in my two cents worth. It has been such a roller coaster year for pretty much everyone I know. My friend Linda, who I’ve known since third grade and who has been in and out of my life all those years, died of Covid on January 2, 2022. It was totally unexpected that she got Covid in the first place. It’s a long involved story that has been repeated far too many times around the world since this pandemic started. Every day I’m reminded of Linda in my life by something in my home, a memory, a scent. It’s funny, most of my friends don’t remember me talking about her much. It wasn’t that kind of relationship. It was like breathing. It just was. Linda’s passing was followed by far too many others in our world, including my friend danny Blake, who is the person who got me involved in the disability movement in the first place. He lived in Tucson, and we had reunion plans that just didn’t happen.
We’d just started making friends here when Covid hit, putting a stop getting to know new people. At least that’s how it felt at the time. Looking back at the year though, I realize that what really happened is we really solidified our friendships with the people we did know. When Steve fell in March, neighbors came forth asking what they could do to help. Sometimes it was little things like putting out and putting away our trash and recycling cans for us. Sometimes it was bigger things like bringing fresh caught and flash frozen wild caught salmon and halibut from Alaska. So many acts of kindness and friendship were again put to the test when I fell in October. I was standing on a raised platform at my doctor’s office, getting X-rays when I slipped. I was barefoot, and my feet were sweaty, and I just went down, getting caught between the platform and my wheelchair. My leg snapped. I knew pretty much immediately that my leg was broken. The L shape of my leg was a dead giveaway. So I was escorted to the hospital across the street, where I was admitted and had surgery the next day. Nothing like calling my husband on his birthday to tell him I’d broken my leg and was in the hospital. So, I had surgery, went through rehab, and came home. My leg is in a brace from good old Amazon. January 4 is my next appointment with the doctor to get X-rays to see how the healing is going and to discuss what to do about the knee, which is why I was at his office last October in the first place. My knee has become increasingly unstable in the last while. It looks like more surgery is in my immediate future. Yippie.
Other than the orthopedic drama there have been good things in my year. I continue to work with our trainer, Jan in the pool, (well, I’m on temporary break, so to speak!) I’ve gotten to know a couple of neighbors better, I’ve been baking up a storm, and loved having our daughter, son in law, and grandkids visit, even though the circumstances weren’t ideal since they arrived within days of Steve’s fall. Aimee and I gabbed up a storm as always. What was a real gift was that I got to spend some real time with David, our son in law. It’s really the first time we’ve had time to talk, just the two of us for hours at a time. I am absolutely in love with this guy! If it wasn’t for Steve, and for the age difference, watch out! I’m kidding, just kidding. I also got to spend some time baking with Ceci, which I loved doing. You see, this visit was the first time we’d ever been in the same room together. We’ve been doing FaceTime for years, but never been physically in the same space. Talk about a gift! Wow, do I love this girl! Unfortunately, what with the stress of the timing of the visit, Jaden and I didn’t really have the time to hang together, but we checked in, and I felt the love. He is one special guy. Talk about a loving, deeply caring human being, whew! Watch out Dalai Lama, here comes Jaden.
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I have totally lucked out with Steve’s sister and her wife, as they are both my kind of people. I love them both. They were here after Steve fell, Barb, as you know from Steve’s part of this letter, came and helped in so many ways after I got home from rehab. I tell ya, that woman has more patience than anyone I know! She was here for about ten days, and she’s still talking to me! Amazing. Another gift in my life.
All in all this year has been about gifts arising out of unexpected circumstances. I haven’t talked about my sister, who took a month out of her life to come help us out, or our dear friend Helen who played a big part in helping me keep my sanity by telephone during the delight of our falls, of Ann, who is just Ann. Nothing more needs to be said. Then there’s Judi, my Backgammon buddy from Way back when we were neighbors, and I have a connection with that is indestructible. Then there’s Pat. How do I talk about someone when there aren’t any words. This isn’t a scale or list of the most important people in my life. It’s about the gifts who showed up this past year when I needed them most. It certainly isn’t complete. You may notice I haven’t mentioned Steve, who is the biggest gift of all. Just trust me about that, ok?
What do I want out of 2023? For things to be easier for both Steve and I physically, that’s for sure! For a van that fits both of us, so our world is a whole lot bigger than it is now! I want peace. I want a world that feels it’s a whole lot more important to have a heart connection than to think that having the most “toys” makes you the winner.
On that note, I send you all love, LIL
—
Disability Culture Consultant
My books:
Ed Roberts: Wheelchair Genius;
Movie Stars and Sensuous Scars: Essays on the Journey
from Disability Shame to Disability Pride;
Surprised to be Standing: A Spiritual Journey
