Adventures and Misadventures

 Hindsight 2021, continued.

As I write this, I’ve been housebound for five days. Not that we’ve had much snow here in Portland, but it doesn’t take much to make the ramp inaccessible for me. I may be able to slide down in my wheelchair for a thrilling, heart-stopping few seconds, but getting back up, if it’s at all icy, is another story. The good news is: Laurie’s been on her winter break the whole time, so I don’t have to sequester away from the toddlers in the house. It seems to be melting enough today that I *might* get out to the cottage for a much-needed shower!

We had a very sudden change to our back yard landscape in November: our neighbors’ huge walnut tree crashed down into our yard (and a few others) and took with it our beloved apple tree. Most importantly, there were no injuries (close call though!) and very little structural damage. We keep trying to look at the bright side (pun intended: we have a LOT more light now!) – this means that solar panels will work on the house and possibly the cottage; and it gives us an opportunity to redesign the back yard into a more accessible space. It will happen in stages, as it still has to work for children for the next 18 months until Laurie retires, but then we can go wild: put in poisonous plants and ponds and beehives! Kidding. It will be nice to not be restricted by childcare rules though. We’re looking forward to having more light for vegetable and flower growing. I’m NOT looking forward to the lack of shade on the cottage – it has been a very cool spot on hot days. And with summers getting even hotter (yes, we hit 116 on June 28^th under the heat dome) it is a worry. 

The base of the walnut tree was like a sponge.

Goodbye, beloved apple tree.

We had a lovely ceremony and blessing for the trees and the new space. Friends read poems and sang songs.
 

Toward the end of Laurie’s summer break in August we attempted a couple of day trips. I say ‘attempted’ because they did not go to plan. One was to the marina to check on Silkie; my scooter stopped part way back up the very steep ramp. I’d forgotten about the reset button until after Laurie and a helpful stranger pushed me and the scooter the rest of the way up. Oops. We’d intended to do a trail on Sauvie Island, but I didn’t discovered the reset button until we got home, so we had to be content with driving around the island.

 

The next misadventure was to Powell Butte, on the east edge of Portland. We knew there were good accessible trails throughout the park, but we managed to pick the one that wasn’t. After a few hundred yards down the packed dirt trail, we encountered a step – and by ‘step’ I mean a 6 inch drop. What?? And why did we not turn back right then?? But we were determined. There was some room to the side of the step, so I wrangled the scooter around it and carried on. Then, another step farther on…and another. Well shit. By the fourth step my luck ran out – the scooter tipped and I ended up on the ground with the scooter on top of me. No bodily harm done. Laurie kept her cool, put the scooter back together, tried to soothe Liza, who by that time, with the heat and the stress, was having a seizure and probably heat exhaustion. I decided my best option was to stay on the ground and call 9-1-1. I sent Laurie and Liza down to the van to get them cooled down and watch for the rescue crew. Within twenty minutes a fabulous crew of firefighters arrived to lift me up and carry me and the scooter back up the hill. (But not before a twenty-something guy walked right by me, didn’t even look at me, let alone ask if I needed help. WTF?? I called after him, “No, I’m OK, thanks!” but he probably didn’t hear me, being plugged into his device.) We all survived, and I hope we are a bit wiser now and won’t attempt anything like that again.

 

Lest you think I’m a walking -er, rolling – disaster, I did have some wonderful outings with Gwenlyn in spring and summer. We went to several wildlife areas (Fernhill, Jackson Bottom, Smith and Bybee Wetlands) and had a great time photographing birds and, well, just hanging out together. And no scooter mishaps occurred!

 

Speaking of scooters again, still — I’ve ordered a new one. This one comes with shock absorbers! for our awful bumpy Portland sidewalks; a headlight; extra storage - because I can never have too much; and a few other features I’m happy about. My current scooter has been such a trooper, I’m almost afraid to let it go (I’ll donate it to the MS Society). But it’s the same brand and model (Pride Go-Go), and they have a great track record. The new scooter is caught somewhere in the web of the supply chain, so who knows when it will arrive. 

There. I think I’m caught up. I wish you all a fabulous 2022. May we improve on the last two years. 

Hindsight is 2021

 (Title stolen from Preet Bharara)

Here we are, at the end of another effed up year. Just when we thought it was going to be safe, Omicron reared its ugly head. And the cray-cray Trumpers are still at it, worse than ever. I have to say it: I fear for our democracy.

 

But you know all that, and I don’t need to say much about it except:

In my little world this year, I’ve had some ups and downs; mostly ups I’m happy to say! 

 

I’m still keeping up my daily meditation practice via the Ten Percent Happier app. It’s a great resource for guided meditations, courses in mindfulness, teacher talks, even some challenges (e.g. the Ted Lasso kindness challenge and, coming up, the getting unstuck challenge). I love starting my day this way with some quiet, contemplative time, one or two guided or unguided meditations, then into my Zoomed writing group, the Creative Coven. I feel pretty grounded, especially if I don’t listen to the news first thing. That can ruin my day.

 

Mondays I meet with the Portland writing group (Friends with Pens) that came out of Natalie Goldberg’s intensive in March. We also meet on Zoom most weeks (what would we have done without Zoom these last couple of years?? Wish I’d had the foresight to buy stock in it!) but we were able to meet in person a few times during the summer at Tryon Creek State Park. It was lovely to meet face to face, finally, and write together in the forest. 

And I was able to attend a fabulous weekend writers’ workshop near Port Orchard, Washington IN PERSON with strict Covid protocols in place. Great teachers, meeting up with old and new friends. Check it out for next year: NW Writers’ Weekend. You can read one of my pieces from Marie Eaton’s class on the post just before this one (which is actually below this one).

Terri rowing Silkie

My dream of having a rowboat came true in August. My dear friend Chelsea, who died 4 ½ years ago from metastatic breast cancer, had a lovely little skiff named Silkie. Last year I talked to her husband Thomas about either buying or fostering Silkie; he wasn’t ready to sell her, so we came to an agreement that I would find moorage, maintain her, and row whenever I wanted. I worked with my trainer Shawn (who is also a rowing coach!) on strategies to safely get in and out of the boat by myself from the dock. I was making progress and absolutely loved rowing! After a half dozen trips on the Multnomah Channel, the rains came and didn’t stop for weeks. Then came the issue of having to keep her covered so she wouldn’t sink. It became apparent to me that my vision of being independent with the boat, not needing anyone to help me in and out or accompany me on a row, was not going to manifest. In addition to my difficulty getting in and out of her safely, I needed to be able to cover and uncover her from the dock, and it was just not doable. After one recent fall out of my wheelchair while reaching for something (not at the river) and another fall transferring to my chair from the bed, it was evident that it was going to be too risky. I had to tell Thomas that I just could not keep fostering Silkie. I feel very sad and disappointed — but at least I gave it a good try! I owe a million thanks to Thomas for entrusting Silkie to me, to Shawn, who went above and beyond, Gwenlyn for helping move Silkie to the marina, and Fred’s Marina, for keeping Silkie bailed out the last few months. I will miss rowing.

Sauvie Island Bridge under a rainbow.

 

One thing I’m looking forward to in 2022 is taking cooking lessons from Cassie Larson, a whole food plant-based nutritionist who specializes in teaching people to cook whole foods.  (Find her business, Cassie’s Plant-Based Kitchen, on FaceBook or Instagram.) I’m excited to learn how to cook nutritious food for Laurie and to make some significant changes in how I eat. I don’t know if I’m up for full-on vegan (my coffee without ½ and ½???  No cheese???) but small steps.

Laurie and I were able to take a couple of trips last summer - one north to Lummi Island (near Bellingham) and one south to North Bend to visit Charlotte and CJ. The Lummi trip was challenging for me re: accessibility. We borrowed a ramp for the entrance and thought it would work for me, but it didn’t. I managed to get in the house but it was so difficult that I didn’t leave the house for the four days we were there. Yet another lesson in renting a place without having eyes on it. Fortunately, it was a lovely house and I had lots of books to read. My sister Nancy, who lives in Bellingham, came over for what she called Day Camp - the intention was for her to stay with us for the four days, but it was just as Delta was ramping up, so she was more comfortable visiting during the days and going back home. 

Our visit to North Bend - with overnights in Eugene going and returning - was so much fun. It was our first visit to their place on the coast. So many wonderful trails and beach views nearby, and as usual, Charlotte has done a remarkable job designing and creating gardens. She and CJ even created a ramp for me to access the house! 

In my travels around the neighborhood on my scooter, I often encounter sidewalks that are challenging or impossible to traverse, usually because tree roots have lifted chunks of the concrete. One in particular on a route I take daily was making me crazy. I’d reported it to the city sidewalk agency multiple times, but nothing was done. I decided to enlist my friend Tara to do a little guerrilla sidewalk chalk art; she delivered beyond my wildest expectations!  

It still isn’t fixed.

I have a few more updates, but this is getting long and I’m getting tired! I’ll try another post before 2022! That’s what I get for waiting months between posts.

For the love of books

I used to be an avid reader. There were a few years I read 75-100 books, and I don't consider myself a fast reader. I just love the written word and couldn't get enough of it. I even wrote a book blog for a while, keeping track of everything I read and writing a number of reviews.

The past several years I haven't been able to stay with a book, probably due to pain and pain meds sapping my energy and concentration. There's also been my obsession with the news and television (which I watch on my laptop). But last week a couple of things conspired to snap me out of it - after the Kavanaugh hearings, I couldn't bear to watch any news, not even my beloved Daily Show or Colbert. I can't even open Facebook right now. It all sickened me. I turned to a book that someone had recommended - Every Note Played, a novel by Lisa Genova - about a concert pianist who contracts ALS. It is painfully beautiful prose, detailing his loss and grief through the progression of the disease. It hit close to home in the surrender to the losses (though mine are nowhere near that horrible disease), but I was somehow able to distance myself from it enough to be engrossed in the writing and the story. There were moments of humor as well as the heartache, like this moment that had me chortling:

She was ecstatic to see the wheelchair go. In her 32 years in the real estate business she says that nothing ruined the feng shui of a home more than a power wheelchair.

(Genova also wrote Still Alice, a novel about Alzheimer disease; I have it on my shelf but haven't read it yet.) I whipped through the book in a few days - I think it's the first book I've actually finished for a few years. (Exception: Born a Crime by Trevor Noah.)

A small sampling of what awaits.

I scanned my shelves - filled with unread books - for another candidate and pulled out a Rose Tremain book, Sacred Country. I remember loving other books of hers, and I was immediately drawn into the story and writing. How's this for the turn of a phrase: The infinitesimally small but telltale feeling of bruising on the inner thighs that accompanied desire….
Oh my.

I've been almost giddy with my renewed love of good writers who craft stories, paint pictures both beautiful and ugly, create phrases that sing on the page. Perhaps now I will be inspired to get back to my own writing. 

Next up: I found myself in Powell's Books yesterday and spotted a new Isabel Allende novel, In the Midst of Winter. She is among my top five favorite authors, so I didn't hesitate to pop it into my basket. I almost started it right away, but knew I probably wouldn't get back to the Tremain book if I did, so it sits on my desk, waiting patiently, a delicious treat to savor one day soon.

I have a lot of catching up to do!

Is it accessible?

[Caveat 1: I know there are other disabilities people struggle with that need to be addressed, but this is the one I know, so this is what you get!] 

[Caveat 2: I realize I've written about this before, but it's an ongoing issue and I still need to kvetch about it and remind people about it. Plus, here are some solutions!]

I sound like a broken record: "Is the venue accessible?" I ask every time I plan to attend a concert, workshop, meeting, party. Some people have gotten that question from me multiple times; now I just say, "You know what I'm going to ask." I admit to occasionally asking even knowing I probably wouldn't attend; it's my self-imposed mission to remind people that it's important to consider their venue choices in terms of access. I know it's not always easy to find a place that everyone can access; and I know that people often try and don't always succeed.


But I will tell you this: it feels rotten to be excluded from an event that I want to attend. 

I don't expect access to be the first consideration when people are planning events, but I do hope it occurs to them at some point, and even that it's fairly high on the priority list. 

Things have come such a long way from pre-ADA days. I can't imagine what it was like for people in wheelchairs before curb cuts and mandated accessible bathrooms and entrances to public buildings. But we still need to do better.

One of the reasons I'm not singing with my choir now (Aurora Chorus) is because of access. The rehearsal room is manageable, but certainly not ideal (and this is a State university building!). The room entrance is at the top tier of the choir risers/steps, and so I'd be stuck there, unable to get to a lower level to see and hear better and participate fully. It worked, sort of, when I was using a walker, though I'm amazed I didn't fall, hauling and bumping the walker up and down the steps. The concert venue they have used for the past six years or so - a church - is abysmal for people with disabilities, both for audience members and for performers. The stage is difficult at best and impossible at worst to access with a wheelchair. But thanks to the persistent efforts of the board and concert committee, the choir is changing venues, and they tell me that this one is accessible, so I may be returning in the fall. 

Something that will make that possibility even more doable is the wonderful wheelchair van we now have! I no longer have to wrestle with getting the scooter on and off the power lift, and I can now take the wheelchair out and about, not just the scooter. (More on this in the next post, coming soon.)

Having an event? Check it out!

Below is a checklist I devised of some things to consider when planning an event. Some of these will be N/A if your event is in a private home (but if there are too many N/As, consider changing venues!). These apply to wheelchair users but are also appropriate considerations for people using walkers or canes.

• Assistant: Is there someone - not the host - who can be a point person? Someone to connect with the wheelchair user to show them best access and check with them through the event? I have appreciated this so much when it happens; for example, Artichoke Music does it right! I felt downright pampered there when I attended a concert. 
• Location: Is the venue easy to get to by car or mass transit? How's the parking for a van with a ramp? Is it possible to save a parking spot or spots for wheelchair users or people who can't walk far? 
• Entrance: Are there steps? Even one step can make entrance impossible. If so, is there an alternate entrance? Make sure it's clearly marked and easy to get to. Another option: some mobility stores have ramps to rent.
• Seating: Will there be designated wheelchair seating? Some users are fine sitting in their chairs, others prefer to transfer to a "real" chair. Paths to seating need to be kept clear - free of equipment, cables, chairs, etc. 
• Bathroom/s: Are they accessible? This can mean a lot of things: doors need to be wide enough for a wheelchair; grab bars are mandatory in places that claim to be ADA compliant. If this is a private home, do the best you can to make it accessible. I can walk a short distance if I have sturdy things to hold on to, but not every wheelchair user can. If your bathroom isn't fully accessible, be sure to make that known.
• General flow: Is the event on more than one level? If so, is there an elevator? Are aisles and access routes clear and wide enough for a wheelchair or walker? If there are food tables and products for sale keep access open for wheelchairs and keep the table height low enough for a wheelchair user to see and reach the items - especially the chocolate! For a banquet-type setup with multiple tables, often the tables and chairs are too close together to allow a walker or wheelchair through. Do the best you can to create pathways so the user isn't confined to the perimeter. You may have to remind other participants to keep pathways clear.
• Signage: Have some good, legible signs to indicate where bathrooms, alternate entrances/exits, food and drink are. Make sure they're posted at a level that someone in a wheelchair can see easily.
• Emergency exit: It's not a bad idea to have a plan if it's necessary to evacuate someone who can't walk, especially if the event is on an upper level and the elevator isn't usable. Designate a few strong people who could potentially help someone down the stairs if necessary.

If you are the wheelchair user, it's always a good idea to call ahead of time to find out the particulars and to give the event host a heads-up to expect you and your chair. If they need to make any changes, they will appreciate having advance notice.

Well, that's one way to see the stage!

Big thanks to those of you who are already aware and doing much of this. Do you have ideas to add to this checklist? Please leave me a comment below or email me at ladyluck AT teleport DOT com. This is a team effort! Thanks!

Part Three: A Year in the Life

Seattle adventure earns a 9.5 for accessibility.

In July, Laurie and I took the Amtrak to Seattle for an uncharacteristic weekend of theater and art. When we found out last winter that the musical Fun Home would be in Seattle, we started making plans to see it. If you’re not familiar with the musical, it’s taken from the brilliant Allison Bechdel’s graphic memoir of her early life growing up in the family’s funeral home with her closeted gay and depressed father and melancholy mother. It’s funnier than that sounds, but poignant, too. The musical got great reviews and won some Tonys.

The Access for All sign refers to a WA ballot measure for LGBT rights.

And you can’t go to a city like Seattle and just see a musical without doing some other sightseeing.

Our weekend started out on a bad note when the taxi we’d reserved for 7a.m. Saturday to take us to the train station failed to appear. We probably would have gotten a taxi if we hadn’t needed a wheelchair van – apparently they don’t have very many of them and, even though I’d reserved it, someone else got to it first. We had to take a later train and to be sure we got to the station this time, we took the bus downtown – we probably should have done that in the first place!  Fortunately, our theater tickets were for the Sunday matinee so we didn’t miss out on that! And yes, the taxi company got an earful. What does the word ‘reserve’ mean to you??

Getting on the train was pretty easy - they have a mini-elevator that lifts me and the chair right into the car. Maneuvering in the car is a different story, as there isn't much room. It would have been better in business class, but since we had to take a different train, we had to go coach. 

I’d decided to splurge on a nice hotel in the heart of downtown. Almost everything was within easy wheelchair/walking distance. When we checked in, the clerk said they hoped it was OK that they’d upgraded us from a regular ADA room to a deluxe one, and to please let her know if it didn’t meet our needs. It was a corner room on the top floor with a great view of downtown, Mt. Rainier, and Elliot Bay. Yes, that’ll do! The room was huge and beautiful, just right for a much needed afternoon nap.

Sunday was a full day. We hopped (OK, I rolled) on the monorail which to my surprise and delight is fully accessible. I’m pretty sure the last time I was on the monorail was at the 1962 world’s fair. One nice thing about it, you can’t miss your stop, as there’s only one – it travels from downtown to the Seattle Center (right under the Space Needle) and back again. I had a moment of panic when we arrived and the door opened to a six-inch gap between the monorail car and the platform. But the conductor was there in a flash with a ramp for negotiating the gap.

We’d come to the Center to visit the Chihuly Museum of Glass. Wow. What a master artist! I was brought to tears a couple of times by the beauty. I’d only seen small pieces of his before, so to see the larger ones full sized in real life was overwhelming. I was so grateful for the ease of rolling through the museum. And the garden! (what could be better than Chihuly art? Chihuly art in nature). Maybe one day I’ll own one. (Does one ‘own’ art? Or is it simply borrowed?)

We’d planned to see Yayoi Kusama’s “Infinity Mirrors” at the art museum after hearing such wonderful things about it. But a couple of reviews cautioned about not only the long lines to get in but the moving lights that could set off Laurie’s vertigo and a couple of ‘rooms’ that were viewed from a platform that I could get up to just fine, but would probably have to back down a ramp, a skill I’m not very comfortable with in the wheelchair. So we decided to nap instead.

Fun Home was fabulous. I think I loved it more than Laurie, but we both enjoyed it thoroughly. I was especially impressed with the youngsters in the show.

I had purchased wheelchair seating, which was great (and half price!) except the location in the theater was less than perfect. We were close to the front, but way over to the side, stage left – we missed some of the visuals, which is unfortunate. I don’t think we missed much, but it’s a mystery why they can’t make every seat with 100% view of what’s happening on stage.

We met a couple of friends for dinner after the show - another easy roll/walk from the hotel. It was a lovely way to end the night.

Monday morning: We couldn’t leave Seattle without doing the Pike Place Market, which was just a few blocks from our hotel. We were greeted by this enthusiastic crew of fishmongers. Even though it was crowded, it was pretty easy to get around, though there is a lot of uneven ground, especially just outside the main market area. I had to navigate pretty carefully on cobblestones and dirt berm.

One final stop before heading for the train station: Seattle Public Library, downtown branch – across the street from our hotel. What an amazing bit of architecture! Except for the colorful escalators, it’s completely accessible; in fact there’s a spiral ramp that goes on for five or six floors in a very gentle slope.  I’m often not fond of ultra-modern architecture, but this is a very impressive building. Maybe it’s the reflective surfaces that make it seem welcoming rather than cold and impersonal like some modern buildings do.

It was a jam-packed weekend and a roaring success of a trip. If it hadn’t been for the taxi fiasco, I’d give it a ten for accessibility success! And that part happened in Portland.

Next: an upcoming accessibility makeover of the cottage and a few odds and ends.

A Year in the Life

Terri

Another year gone. Another year without a blog post. It’s not that I’ve had nothing to write about; on the contrary, I have so much I might break this up into three or four posts. And I’ll jump around the timeline, so if you’re OCD and can’t bear the thought of that, you should stop reading now!

++++++++++

When we last saw our intrepid crusader, she was lamenting the inability to travel back in time to re-live her childhood beach trips.

I celebrated my 67^th birthday last week, though “celebrated” is a bit too grand for what really occurred. I “acknowledged” it or “gave it a nod.” What I did celebrate, quietly but joyfully, was being cancer-free for 16 years. (For those who are new to this blog, I discuss that part of my journey thoroughly in the first few posts.) Though cancer treatments have left me with some disability, I feel extremely blessed to have survived with most of the essential me intact.

Others in my circles have not been so fortunate. This year I’ve lost several friends to this fucking disease, and several more have been newly diagnosed. I’m angrier than ever now that environmental protections are being stripped by this insane administration when so clearly our high rate of cancer and auto-immune diseases results from the toxic mess we’ve made of our air and food and water.

“Wow,” you say, “it only took her two paragraphs to get into a T.R. (Trump rant)!” This year has been one of a lot of anger, disbelief, despair, and desperation, so I’m never very far away from a T.R. I am getting lots of fine muscle exercise: for my neck by vigorously shaking my head constantly; for my facial muscles from dropping my jaw and gritting my teeth (I haven’t done very well with holding my tongue); face-palming is good for circulation and eye-rolling for eyesight.

One of the more active roles I played this year was to coordinate mobility assistance for people with disabilities to participate in the Women’s March in January. I was able to procure some wheelchairs for people who wanted to march but weren’t able to walk the route (thanks to Kara Ford and to the MS Society). The event was difficult to manage and not everyone had their needs met, but those who did expressed so much gratitude that accessibility was considered and attempted. We might have been more successful if it hadn’t rained bucketloads and if we’d had smaller crowds – though I’m not complaining that around 100,000 people showed up to express their disapproval of this mockery of a president and to affirm the power of women!

And speaking of politics and the stripping of regulations, please pay attention to this bill before Congress and urge your Congress critters to vote ‘no’ on it.   ADA Education and Reform Act of 2017 (HR620)

“A new piece of federal legislation would delay consumers’ ability to hold businesses legally accountable for failing to comply with the Americans with Disabilities Act (ADA) — a move that some critics say could allow companies to never comply with the ADA in the first place.”

Let’s not make it even more difficult for wheelchair users and other disabled folks to access businesses.

SE Salmon east of SE 37th

And, speaking of that! I’ve been on a quest to document areas in my neighborhood that are difficult – even dangerous – for wheelchairs and scooters (and strollers) to drive over because of severe bumps – usually caused by tree roots or degraded sidewalks – or the lack of curb cuts. I’m surprised how many there are in this progressive neighborhood – but it’s also an old neighborhood so I suppose that contributes to the problem. If I come to an intersection without curb cuts, sometimes I have to go an extra block to find a safe place to cross, or risk driving in the street. I’ve been traveling with my camera and when I encounter an obstacle, I photograph it and jot down the address or intersection. I’ll be sending my first batch to the city this week. I realize that fixing them is a budgetary concern, but so is paying out a whopping lawsuit if someone injures themselves on a poorly maintained sidewalk.

Here’s an update on my love/hate relationship with my power wheelchair. I love that it saves me so much pain and allows me to go places I wouldn’t be able to otherwise. I love that it’s so maneuverable (turns on a dime!), it’s much easier to get on the bus and turn around. However, until we buy a van with a ramp, I can’t take the chair in the car. I hate that it’s so big and bulky; I still run into things, still catch things under the wheels and drag them around (like the bag that held my iPad that did not survive getting run over). I hate that all our walls and cupboards and doors have gouges from the chair scraping them.

And this: 

Oops.

(No humans or animals were injured in the making of this blog post. Kitchen utensils did not fare as well.)

Kwan Yin in the snow.

I had a taste of being completely housebound last winter when we had snow and ice on the ground for ten days. I couldn’t even safely go out on the porch for many days, and scooting anywhere was out of the question. It was a bit crazy-making. We still had toddlers coming four days a week, so I didn’t even have free reign of the house during the day.

I have much more to catch up on in the world of access, but you need a break and I need a nap. Next post, I’ll tell you about my writing retreats and project, a couple of wonderful trips we took (Seattle and Manzanita), a big remodel project in the cottage, and some new babies! And what about music you ask? Stay tuned. (See what I did there??)

What I Didn't Do on My Summer Vacation

Learning to row; sisters and cousins

When I was a kid, we spent summer vacations at Hunter Point, an enchanted beach near Olympia on Puget Sound: pristine sandy shores; views of forested islands, Mt. Rainier, and the Olympic mountain range; acres of woods to explore. From the moment we arrived to our tearful departure two weeks later, my sisters and I played on the beach or in the frigid water, swimming, rowing, water skiing. Beach fires in the evenings, fishing in the mornings, we lived by the rhythm of the tides.

Hunter Point cabins

The cabins were funky and old and smelled of mildew, the water tasted of iron, we cooked on a wood stove. The beds, when we slept inside, were thin mattresses on squeaky metal springs. None of that mattered, we were blissed out.  We ate Dungeness crab, caught on a rusty oven grate using bullheads for bait; buckets of butter clams, dug early in the morning on the far side of Squaxin Island; flounder and sole brought up from the kelp beds using sticks and string ; and the occasional trout or sea-run cutthroat, caught casting from shore. We rowed old wooden boats to uninhabited islands and explored their woods, creating stories about who might have lived in the crumbling cabins; we found treasures of broken bottles and old leather boots and collected endless jars of stones and shells.

On Squaxin Island with sisters and cousins.

Back home, after weeks of shaking out blankets and washing clothes, the sand and salt and wood smoke smell would finally disperse; but our memories of the beach remained indelible, never far from the surface.

So I was excited when my sister Nancy discovered a place on Orcas Island that had an ambience similar to Hunter Point: funky old cabins at a sandy beach’s edge, views of islands and expanses of water. Laurie and I planned our trip for months. I pored over old family photos and rummaged through memories of our many beach trips. I remembered collecting tiny shells and stones from the tideline, and digging clams and geoducks at low tide, the smell of beach fires, of early morning salt air. In retrospect, I wanted to relive those carefree times and foolishly dreamed that this trip would be all that.

North Beach, Orcas Island

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Reality: when we finally arrive at North Beach after an arduous journey, I am in such pain I can hardly move for the first couple of days; I’ve had to walk a lot more than I’m used to and it takes a toll (new appreciation for the wheelchair!). Reality: the funky old cabin has no comfortable place to sit, and the couch is so low the view out the window is obstructed. Reality: the ground is rough and rocky and my scooter won’t go beyond the bit of grass that stops twenty feet from the beach; there is a tall berm so I can’t even see the beach-proper, let alone be on it. Reality: there is a burn ban and we can’t have a beach fire or even one in the fireplace; no wood smoke fragrance will follow us home.

Reality: I am crippled and getting older and cannot relive my childhood.

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I want this trip to be more than a reminder of all I cannot do.This requires being in the moment, an acceptance of what is, and creating new ways of doing trips and vacations. And letting go of expectations. (The definition of expectations: planned disappointments.)

Laurie is content to read through her stack of books; she has no need to be out doing and going, she appreciates this utter silence and these long vacant hours for reading and resting. I am also mostly fine with this; yet I yearn for an evening on the beach, to sit on a blanket on the sand, watch the fire curl and flare, count shooting stars, tell ghost stories, sing silly songs, have sandy hot dogs. 
And s’more. 

Hunter Point: Dad teaches us to lay a beach fire
(Thanks for sending the old photos, Nancy!)

Gone to Ground

[Urban Dictionary: ‘gone to ground’ = To take evasive action in order to avoid further attention. To "lay low."]

My therapist suggested I write this post for a couple of reasons: 1) Writing is a good creative outlet for me and can serve as a catharsis (aka emotional dump); 2) it’s a way of letting my peeps know what’s going on with me without having to talk about me when I don’t feel up to talking about me (aka I’m sick of myself).

It’s become increasingly difficult for me to be in groups, to go to events, even to visit one-on-one or talk on the phone. It’s a bit of a vicious cycle: I don’t participate and so I don’t have anything interesting to talk about, and I don’t have anything interesting to talk about, so I don’t want to participate.

Pain and pain meds still conspire to keep my energy ebbing most days. I’m content to stay home and bake or watch cooking shows or do crossword puzzles or spend far too much time on Facebook watching Donald Trump melt down. I did get my studio arranged so that I can do some collaging, another good creative outlet. But I haven’t been spending much time with my music lately, just a bare minimum with my ensemble, Tapestry. It mystifies me why music feels like such a chore these days.

Choir rehearsals start again in a month, and I still need to decide if I’m going to sing this term. It feels daunting  – not just the physical difficulty of getting and being there, but it is an emotional drain as well and can include a lot of conversations about how I am and what I’ve been doing (see paragraph 2).

Don’t get me wrong – I love my friends and family and music pals to bits. I miss them. I am blessed to have such rich relationships. But guess what? When I’m not available those relationships suffer. I let people down by not responding to calls or emails, by not initiating contact, and I let myself down by not having the pleasure of their company, which always turns out to be so nourishing.

 

And then! I have to fight the shame and guilt, and another vicious cycle is unleashed.

Some of this is related to still getting used to being in a wheelchair 90% of my mobile hours. Some is the very real possibility that it may soon be 100%, as the nerve damage seems to still be progressing. There is ongoing grief about all that I (rather we: I have to include Laurie here) have given up: I would kill for a walk on the beach or a hike in the forest; I would love to dance again; to go out to dinner or a concert without having to worry if I’ll be able to access the venue.

When can I just ease into acceptance? This is the new normal after all – for now.

So I would ask this of you, my dear friends: When you see me, I may not want to converse much. Please don’t take it personally. I need to reboot my life, which means this hiatus may go on a while longer. If I want to talk about how I’m doing, I will, but know that I might decline. I’d rather hear about you, or commiserate about the train wreck of an election we’re witnessing - and maybe cheer a little about having a woman president!

Laurie and Liza and I will be spending a week on Orcas Island at the end of the month. I’m excited at the prospect of looking out over calming waters and of having no internet access for a week - unplugging will be good for me once I get over the shock of it! Sounds like a good recipe for a reboot. 

Creativity and disability

Birds by vladstudio.com

I’ve been a fairly creative person most of my life. Topping the list of creative enterprises is my lifelong love of music, primarily singing. It’s the one I always return to if I stray. Songwriting and guitar were natural progressions for the type of music I sang. And I’ve always loved to write.

Over the last decade I’ve taken on some new creative challenges, including photography (samples), collage (sample), piano, song arrangement, writing blogs, and teaching music (web site).

I’ve been thinking quite a bit about how being disabled and having chronic pain have affected my creativity – and vice-versa. There are the obvious physical effects – I’m limited as to where I can go to take photos; I don’t have the stamina to perform music as often as I once did; getting myself to choir is becoming more difficult to manage; and even with a raised garden box, I find gardening challenging and not as enjoyable as I once did. But there are some positive effects as well.

My most recent creative undertaking has taken me by surprise: I’ve begun baking. For some reason, this month I binge-watched The Great British Bakeoff: five seasons of very fancy baking – tarts, pastry, breads, puddings, biscuits (known in the US as cookies). Baking is not something I’ve ever spent much time doing, except my annual challah (braided egg bread) around the winter holidays and the very occasional batch of cookies. I was so inspired by the beautiful creations on the show, and it looked so satisfying to mix some ingredients together and, like magic, pull a savory pie or gorgeous dessert out of the oven or freezer. I love the science, the chemistry, and the artistry of it.

To get baking, my first task was to set up the kitchen in the cottage (studio) to make everything accessible. It’s a small space and I need to sit on a tall stool for most of my work. Almost everything is within reach now – bowls, pans, flour and sugar, utensils, appliances. It has also required purchasing quite a few toys tools. I’ve never before drooled over kitchen catalogs or cookbooks (aka baking porn). 

My first endeavors were mostly successful: fantastic focaccia, perfect pistachio shortbread, and a special order of vegan cinnamon rolls for Laurie. My cheesecake was a disappointment to me, though it got rave reviews from friends.

I have to wonder: is all this dabbling in different creative outlets a form of distraction for me? I don’t think about pain when I’m singing or arranging a song or kneading bread dough. I’m content doing something that’s fun and productive, and my mind is occupied with the task at hand and not stressing about my burning legs. A couple of times I’ve taken on a bit too much with a baking project and I get tired and sore, but I think that will get better as I get more organized and familiar with techniques and learn to pace myself.

Pure distraction for me is more about activities that don’t result in a satisfying product – things like watching TV, spending hours on Facebook, or playing games and doing puzzles on the iPad. I can get absorbed and sometimes forget about pain, but I don’t feel as satisfied at the end – sometimes, just the opposite: I feel like I’ve wasted time.

At a point in my life when I could – and sometimes do – feel rather useless, it’s good for me to dive into a project that feels purposeful, that results in something others might enjoy and that makes me feel competent and good about myself. Singing does that; taking beautiful and/or creative photos does that; and now baking something with care and love does that (though I need to search out vegan recipes for Laurie!). I’ve signed up for a 2-hour cooking workshop next weekend: 4 Desserts Every Cook Should Know (e.g. dark chocolate mousse!); we’ll see what comes of that, besides expanding waistlines.

Uh-oh, I just discovered three seasons of The Great Irish Bakeoff online. But this is research, not mindless watching! Right??

Pistachio shortbread

It's a small, small world

Occasionally I run across one of my old daily calendars with events and appointments jotted down; or an address book from a decade ago. I'm astounded by how many activities I participated in and how many people I was regularly in contact with.

Since becoming disabled, my world has shrunk considerably. No longer do I have the energy to go out several evenings a week to hear music (or perform it), see a movie, visit with friends, go to a party or out for a meal. Most of my communication with friends takes place via email or Facebook - even a phone call seems daunting at times.

Truth be told, I've always been an introvert and a homebody - I love my alone time, and crowds can make me uncomfortable. But the physical limitations and fatigue factor have compounded this. Sometimes even thinking about going out where I know there will be a crowd is exhausting. Some of it has to do with access, especially if there are unknown factors -- will there be stairs? is the bathroom accessible? -- and some of it depends on my level of pain and/or fatigue in the moment.

I would love to be one of those inspiring disabled people who barrel through life no matter what - showing up at parties and dances, fearlessly braving the obstacles, their calendars full of activities. Right now, my calendar for the next two months shows my weekly choir rehearsals, semi-monthly ensemble rehearsals, my weekly workout session, a therapy appointment, and one outing with friends. It is enough.

What makes me saddest about this dearth of activity is the lack of dates Laurie and I have. We used to go out often for meals, to lectures, movies, and concerts, for walks. Nowadays it's takeout and a streaming movie for date nights. Laurie often goes out with friends now instead of with me. I'm glad she feels free to do that - it isn't fair that we both be restricted by my inability to have a larger life.

This post is mostly for my own observation. I'm not feeling sorry for myself -- my life is quite rich with what I am able to do, and in spite of pain and disability, I'm a happy person. I think a certain amount of social shrinkage is normal as we age; but it has taken me a bit by surprise, especially when I see it in black and white on old calendars.

And I really hope I have not planted an ear worm of It's a Small World in your head.