Part Four: A Year in the Life

The Cottage Makeover

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).

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.

The 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.

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??   

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.

Part Two: A Year in the Life

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. 

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:

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??? 

Green circle is rental house; red arrow is Hunter Point where I lived years ago.

The house, inlet, and land:

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

The yard and bulkhead at high tide.

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.

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??)