Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too. ~~Lawrence Bixby

Saturday, October 7, 2017

Invisible

There is a tendency for women to become unseen as they age. Add to that disability and obesity and I’ve hit the trifecta of invisibility.

Now, there are times I don’t mind being invisible. I am an introvert, which doesn’t mean I’m shy or that I avoid people, I just don’t get my best energy from being around people for long periods of time.

Times I do mind not being seen are when I’m trying to get someone’s attention in a store or at an event. I’ve learned to be vocal when I need something off a shelf that I can’t reach when I’m shopping. I don’t even wait for an employee, I’ll ask anyone nearby to give me a hand, and people are usually more than happy to help. I often crack a joke or at least try to be upbeat about it.


Last year I decided to do something wild to my hair. I have never colored it or tried to do anything fancy – I don’t have the patience to mess with it. But I’ve grown quite fond of the fun colors that people are sporting these days, so I went to my guy and said “color me purple!” I showed him a photo of what I had in mind – strips of purple and teal (aka ‘mermaid blue’). I was so happy and excited when he was done with it – the streaks of color popped out from my silver hair. I knew it was going to be fun. 

What I didn’t consider was how visible it makes me until Laurie pointed it out to me. During our trip to Seattle, I must have had 50 comments on my hair. One woman at the Chihuly garden thought they should pay me to sit in the garden because my hair looked so beautiful with the art! Almost every time I’m out in public, I get comments, always positive, usually from women, though occasionally a man will say something.

And I find that I like the attention! Here I sit in my scooter or wheelchair, an overweight, aging woman, and all sorts of people are telling me how fun – beautiful – unique – colorful – awesome – my hair is! Maybe it gives them something to focus on besides the disability; or maybe it’s so unexpected for someone my age. It is definitely a conversation starter.

I plan to keep it this way for the foreseeable future until I get tired of it. I don’t have to fuss with it or do anything complicated – just scoot over to the salon once a month and kick back while Kahala works his magic and we discuss the state of the world.

Older women are overlooked in so many arenas - in business, politics, advertising, entertainment. Perhaps we need a women’s purple revolution!






Remember this poem from a couple of decades ago?

Warning
by Jenny Joseph




Friday, September 22, 2017

Part Four: A Year in the Life

The Cottage Makeover

Laurie and Terri singing
2005: We had our commitment ceremony in front of the cottage.
A lot of back story here…. If you want to skip this part, scroll down to Start Here (not a link).

When I moved into Laurie’s house in the summer of 2005, a lot of changes were under way. We added two rooms to the house: a sun room on the main level and, after some skillful excavation under the house, a moon room (our bedroom) and a big walk-in closet downstairs. This new construction connected with the existing unfinished basement. The old part of the house was 99 years old.

The expansion of the house made it much easier for us both to live here (though combining kitchens was a challenge!), but there was still the issue of having four babies here during the day and all the noise and chaos that goes along with that. (For those of you who don’t know, Laurie is a family childcare provider.) Fortunately, Laurie had long ago converted her dilapidated garage into a studio cottage; she’d been renting it out for years. We agreed that I would occupy the cottage as a music studio and escape pod from children, essentially renting it from her in addition to contributing to the household.

This little 240 square foot space has been a haven for me, and it’s gone through many iterations over the years, depending on what I’m into. The cottage became a smaller version of the apartment I moved out of after 12 years. I hauled the family piano with me  – a full-sized upright that dominated the room (my nephew Paul now has custody).

Chelsea and Eva in the cottage with baked Alaska
I made a baked Alaska for Chelsea and Eva during my baking frenzy.
Over time the cottage has been a music studio, book and reading haven, art studio (collage and photos), meditation space, bakery, writing nook, teaching space, rehearsal space, guest room, nap room, recuperation area….   There is a lovely loft at one end that used to be my meditation spot and which, for obvious reasons, I can’t use anymore, so the big ladder leading to it was removed which opened up a lot of space. The cottage sits under a big old apple tree and our neighbors' huge English walnut tree, and it gets just a little morning sun, so on hot days, it stays very cool - a summer refuge.



Start Here if you skipped the back story.

It’s been a self-contained little space for the most part, with a kitchenette and running water. The one thing it has lacked is a real bathroom with a flush toilet, working shower and bathroom sink. (I used a composting toilet for many years, and lately have used a commode in a pinch; now I often have to go into the house to use the bathroom, which works alright when toddlers are here – it becomes a bit of a game for them when I wheel in - but doesn’t work so well with infants, which is the demographic now.

Cookies and coffee cupThe other piece of this long-winded tale is that it has become extremely difficult for me to get to the downstairs bathroom off of our bedroom; there are a couple of steps up into the bathroom - and that’s also where the shower is.

So we decided to upgrade the cottage and have a real bathroom built. It involves a bump-out, adding about 20 square feet to one end of the cottage and includes a flush toilet, a roll-in shower and a sink, all accessible. We’ll also be widening the entrance, which is barely wide enough for the wheelchair now (I’ve managed to rip the door off the hinges a time or two), and hopefully upgrading the kitchen to make it a little more wheelchair friendly.

We hired an architect, who took precise measurements and drew up some plans; and we called on our contractor Neil, who with his wife Martha have done all our major projects. We love having them around – it’s the construction noise and dust I’m not looking forward to and will be escaping from for part of it (see Part Two).

It took a very long time to get the plans approved and permits obtained from the city. We had hoped to have the project completed by September when the new group of infants came, but because of the permit delay, it hasn’t started yet. Next week, we’ve been promised, they will begin.



Terri teaching voice to a student in the cottage
Teaching voice; the upright piano was replaced with a more modest one.
Because everything needs to be moved out or stacked in a corner, the whole cottage will undergo a re-do. This will be the fifth or sixth in the 12 years I’ve been here, each iteration requiring a different configuration depending on what the focus is – music, baking, or art. It means being creative with space when you’re only working with a couple hundred square feet. 

So with luck, in a month or two the cottage will have a brand new bathroom; I'll be able to roll into it without smashing anything. As usual, I'm so grateful to Laurie for her skill in envisioning such things and then making them happen.

We're considering a bathroom-warming party. Want to come christen the new toilet??   
toilet: iPoop

Wednesday, September 20, 2017

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.

Chihuly glass sculpture
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.


Tuesday, September 19, 2017

Part Two: A Year in the Life

Flight of stairs with Mt Everest superimposed
One thing I’ve learned as a disabled person is to get a very clear picture of what I’ll be up against going into a new space – for parties, meetings, vacations, whatever the occasion. My first question is always, “Is it accessible?” Then if the answer is “yes,” I always get clarifying information, because one person’s ‘accessible’ is another person’s ‘challenging’ or another’s ‘impossible,’ because people aren’t accustomed to being aware of steps, handrails, rough ground, slopes…. One or two stair steps can make a difference between my being able to attend and fully participate or to be excluded - or something in between. If a place has one or two steps, I can probably get in with help, but I'll need to use my walker to get around, which is difficult and painful and excruciatingly slow. A couple of times this year I went to five-day events that I knew were inaccessible. I borrowed a manual wheelchair thinking that would ease the amount I'd have to be on my feet. How the hell do people use these things??? For one thing, they're impossible on carpeting; and another, how am I supposed to wheel myself and carry my COFFEE into the living room? Let alone my breakfast?? That idea was abandoned quickly and I resorted back to the walker, which at least has a flat surface I can put necessities on - like my ass if I need to sit for a minute. 

Facilitators Kate and Sarah laughing
Kate Gray and Sarah Byrden, facilitators, signal the end of the session.
In April I took part in a writing retreat in the Columbia Gorge - five days of creative juiciness including a lot of stories and laughter that only a group of a dozen amazing, artistic women can conjure. When I signed up, of course I needed information about accessibility. One of the facilitators, the fabulous poet Kate Gray, not only got me complete information about the layout, she also made sure I got the master suite -which gave me plenty of room near where the gatherings took place - plus my own bathroom. I was able to immerse myself in writing  - something I haven't done for a long time. I was also able, with Kate's help, to come up with an idea for an ambitious writing project, which I'll write about later. By the end of the five days, I was feeling the pain and fatigue of being on my feet more than usual (after attempting the wheelchair), but the creative shot in the arm was good medicine for what ailed me.

Another five-day adventure, a trip to Manzanita (a wonderful little Oregon beach town) with Laurie's siblings, was similar in the accessibility challenges; again I tried the wheelchair. I don't know why I expected different results (insanity). But this part of the trip went a long way to compensate:

Terri on beach wheelchair
CJ, Liza, Richard, and Terri on the beach.
The Manzanita Visitor's Center loans out these beach chairs - no charge! - on a first come basis. We were able to use it two days, and my brother-in-law Richard was Chief Wheelchair Wrangler. I can't thank him enough for wheeling me up and down the beach - what a gift. And Manzanita for providing them. Donate generously if you have occasion to use them. I have loved the beach all my life, and it's been years since I've been able to be on it. We got down to the packed sand and traveled north a while, then I asked Richard to stop. I sat - just sat on the beach - and breathed and watched and listened and smelled. And wept.

Sometime during the summer I got an idea I just couldn't let go of - I need a solo retreat for a week or two. I have all but given up on traveling alone because of the challenge of loading and unloading all my STUFF (I do not travel light). But I have to do this for a couple of reasons: one is I need focused attention to work on the writing project I alluded to, and the other is the need to escape the chaos that's coming in the form of a remodel happening to the cottage soon (more on this later). And so began the search.

I spent hours over the course of a week or two looking on Airbnb and VRBO and Facebook for a place that met all my criteria:
  • Accessible - entrance, shower, doors
  • Ocean view - if I can't be on the beach, I need to see it
  • Relatively private and quiet
  • Allows dogs (though I've since decided to leave Liza at home)
  • Within a two-hour drive
I finally found a place in Oceanside, one of my favorite small towns that is mostly built on a terraced hillside. The view was spectacular, the house large and lovely. I was thrilled. But then -- on our way home from Manzanita, Laurie and I took a detour to Oceanside and I realized how terribly unfriendly to a wheelchair and scooter user the town and roads are. Scooting anywhere around town would have been impossible. I had to let it go, which was difficult. And in reality, it wasn't the perfect house.

So back to the drawing board. Another few days on the interwebs with some close calls...then it occurred to me to look in the Puget Sound area, around Olympia, my old stomping grounds. We had a lovely home on the water there when I was a kid, and I still pine for that area. After a few more close calls, I found The Perfect Place. Ten acres of woods, 250 feet of waterfront, a home that is big and gorgeous with lots of windows and that is fully accessible! and affordable! It's also very close to Hunter Point where I spent my formative years (see map below and some photos of the house; also see post from last year, September 4th, for photos of Hunter Point). I'll be there in three weeks, spending twelve luscious days - I'm chuffed! The owner told me she'd arrange for someone to help me unload when I arrive, and Laurie will take the train to Olympia on my last weekend there and will help me load up. How cool is that??? 

Map of rental house and Hunter Point
Green circle is rental house; red arrow is Hunter Point where I lived years ago.
The house, inlet, and land:

Inside of house

Since I can't transport my wheelchair in my current car, I'll be using the scooter inside the house.

Front yard, bulkhead, beach at high tide

The yard and bulkhead at high tide.

Looking across the inlet
Looking across the inlet.

I'm not sure I can get down ON the beach, but I can sit on the bulkhead and build a fire (if it's not too dry). If only I had a rowboat....

I have more to tell, including our trip to Seattle where all things accessible went right! But I've had to write this post twice - the first draft disappeared into the ether when I was close to finishing, so I'm ready to be done.  The next chapter should follow soon.


Sunday, September 17, 2017

A Year in the Life

Terri
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 67th 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.

Sidewalk with cracks and bumps
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: 
Kitchen carts crashed on floor
Oops.
(No humans or animals were injured in the making of this blog post. Kitchen utensils did not fare as well.)

Kwan Yin and trees and ferns covered with snow
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??)

Sunday, September 4, 2016

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
 ~~~~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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!)


Saturday, August 6, 2016

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.