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.

Before, During, and After

This piece was from a November writing workshop; the prompt was to write about a memory that has an emotional charge.

 

 

1.    Before

 

I’m sitting in the purple recliner in the sunroom reading War and Peace. The house is quiet, no children here today. I am loving this book and never imagined reading it, but I’m lost in the story of Pierre, surprised by funny moments and not at all depressed by the scenes of war.

 

It is late August. I am nearly recovered from the surgery I had a few weeks ago. I have my iced coffee nearby, my ritual afternoon drink. The scent of honeysuckle wafts in, mixes with the smell of jasmine growing lustily on the pergola just outside the window. It’s a warm day; a fan is gently moving the air as it oscillates, occasionally blowing on me, then away to the right, then the left, like a hypnotist’s watch. I’m getting sleepy – it’s time for a nap.

 

Laurie is across the room reading her book (probably something esoteric). She is fresh from a bath and smells of mint soap and vanilla lotion. We talk about taking a walk. She’s learned to pace herself to my slow, deliberate walk, a cane my prop. First, I say, I need to nap. I don’t bother going downstairs to bed, just lean the recliner farther back and close my eyes.

 

I drift and doze and think of the kindness of the nurses during my recent hospital stay. They walk slowly with me too, up and down the hallways. One nurse questions me about my foot drop and neuropathy. I have no explanation yet, just guesses from the neurologist who has ordered every test known to Western medicine. 

 

I wake a while later, ready for that walk. Laurie helps me stand, hands me my cane, which has become the symbol of my mysterious disability. Also useful for many things: pushing doors open; signaling to people in a crowd that I am not steady; pulling a dropped sock closer to me. 

 

2.    During

 

As I move toward the door I see a truck pull up. I can’t see the sign on the side, the wax myrtle blocks my view. I watch, stunned, as a man pulls a walker out of the truck and carries it toward our house. “Laurie,” I shout, “why is this guy coming here with a walker??” She doesn’t know. We think it must be a mistake and tell him so when he comes to the door. He looks at the address, the order sheet, asks, “Are you Teresa Grayum?”

 

“Yes,” I say, still puzzled. “But I didn’t order this.”

 

“Well,” he says, “someone at Providence Hospital did.”

 

I reluctantly accept this unwelcome gift and wheel it into the corner in the sunroom. I sit in the recliner and sob. Laurie puts her arm around me. “Tell me what you’re feeling.”

 

“Defeated,” I stammer through tears. It’s a symbol of disability, undeniable now. This is the marker, the next chapter, titled “You Are Disabled.” Laurie reminds me that it’s a tool that can make my life easier and safer – fewer falls, better mobility. And I know this intellectually, but I was not prepared for this change, this statement, this tangible diagnosis of disability. I just wish someone had prepared me.

 

3.    After

 

The walker sits in the corner for a week. I glare at it from the recliner. It glares back, the screws on the handlebars like two beady eyes, daring me. I toss out a “Fuck you” every so often. 

 

Into the second week I decide if its going to sit there in the corner, I’m going to decorate it. I dig out some plastic flowers and tinsel and drape the handlebars with kitsch. I find a bumper sticker I’ve been holding onto and slap it on the front. It reads: “I’d rather be dancing.” And I give her a name: Alice Walker.

www.cartoonstock.com

The inaugural walk around the block is more resignation than celebration.  Yes, I’m able to walk farther and a tiny bit faster, but I still have to mind every step I take. And I can’t get past the feeling of having a blinking neon sign above me that reads “OLD LADY.” 

 

In retrospect, I felt a similar defeat when I bought my first cane after a spectacular tumble down the back porch steps convinced me that it was time. Progressive disability requires progressively robust tools. It also requires emotional preparation, when possible. 

 

It is all, truly, a balancing act.

Hope Springs!

Somehow I managed to make it through 2020 without a blog post, except the first week - still in the Before Time. So in terms of this blog, 2020 didn't happen! 

If only it were that simple. What a crappy year for everyone. It was the Murphy's Law of years. And 2021 didn't start out much better - pandemic surges and variants, the Big Lie, the insurrection. But things have calmed down a little in April, with sanity finally returned to the White House and millions of vaccines in arms.

How was my 2020 you ask? Actually not much changed for me after the initial couple of months of near-quarantine. It worked out quite well for a couple of introverts. Laurie had to close her family childcare for ten weeks, so we had lots of quiet time together. We had groceries delivered at first, then she did the shopping when all the criteria were established at our local grocery store. We agreed that my risk for Covid was much higher than hers, so she became the designated shopper. Not much else was open for business those initial months, so we did a lot of online shopping (mostly for books!). Thank Goddess for the essential workers! After a while, and with the acquiring of a variety of masks, I started to feel more comfortable going out in the world - grocery shopping, and library and Powell's book pickups (still curbside) were the extent of my outings, until recently. And taking Liza out for her scoots. She's been quite happy to have us home more.

The changes to my routine have been small, but significant. I joined a group of writers in March 2020 (led by the incomparable Kate Gray) for a daily morning meditation and prompt followed by 20 minutes of writing, and the reading of the piece that contained the prompt. When the group came to a close at the end of April, many of us wanted to continue, so we now have an established, close-knit group that follows almost the same process. It's a wonderful way to start the day and to get back to writing. 

I extended the meditation piece and began my own mindfulness meditation practice, mostly using the Ten Percent Happier app. I've stayed with it for almost a year, doing morning meditation followed by my writing group. I feel so much more balanced than I did a year ago; I'm more patient, not likely to get upset (except about Republicans), and feel quite contented with life as it is. I'm still amazed that I get up by 7am every morning and wheel out to the cottage for my morning rituals. They have come to mean a great deal to me and to my well-being. Laurie likes to say that I "aced the pandemic!"

I read some fabulous books during the year. Some of my favorites were Braiding Sweetgrass, Hamnet, The Signature of All Things, Bring Up the Bodies, Caste, The Book of Longing, Homegoing, Mink River, and The Invention of Wings. It is lovely to be reading again. My focus is so much better, now that I'm meditating and not taking any more pain meds (besides ibuprofen). New mantra: Meditation, not medication! 

I'm now in the middle of an online writing intensive with Natalie Goldberg, with emphasis on intense! 2,000+ of us from all over the world gather on Zoom twice a week for her talks (Saturdays) and writing practice (Saturdays and Wednesdays); after her talk we go to small breakout rooms and read what we've written. I've been able to get down to some tender places, especially around disability issues. Natalie's style is to write nonstop - meaning not lifting your hand - for the specified amount of time in order to keep your Monkey Mind from interfering. No editing, no crossing out. I'm not always successful, but it is a good practice. I've also joined a small Portland group that sprang out of the class; we're meeting on Zoom for now, but hope to do in-person sessions once it is safe.

My May getaway spot

Laurie and I were both able to get vaccinated in February, which is a huge relief. We're starting to make plans for traveling a bit - including a drive to North Bend to visit Laurie's sister Charlotte and partner CJ. And I've scheduled a solo retreat to the coast in May, where I plan to write for four days. 

I have found it extremely difficult and frustrating to find fully accessible accommodations on AirBnB or VRBO. I think there is a great opportunity for people who could provide that. The places I've stayed in the last several years are not ADA, but have worked OK for wheelchair/scooter. It's a bit anxiety-producing to book a place and hope that it works out like the owner says it will. I don't require much (e.g. don't need wheelchair-height counters or roll-in shower), but it is nice to be able to get into and out of the place without assistance and get from room to room in my wheelchair.

I've been working with a yoga therapist this year - it's been a wonderful experience. As much as I balk at doing yoga in a chair (oh, I miss my robust yoga practice!) it really feels good to stretch my sedentary body. EB has also encouraged my creativity and my meditation practice. She even had me "dancing" to some funky music! 

I'm still enjoying photography - lots of gorgeous spring flowers and birds to photograph now. I just ordered a new camera! one with a powerful built-in zoom, so I don't have to carry extra equipment and will be able to get some of those shots that have been inaccessible to me. I hope it arrives before our travels. 

Here are some local spring photos:

Camellia

Back garden

Egret, Fernhill Wetlands

Spotted towhee

Tiny daisies

I hope to write more on this blog in future. Hopefully there will be some rowing adventures coming up this spring and summer! Stay tuned.

Happy New Year - 2020

It’s time for an update! It doesn’t feel like much has changed since I last wrote, but there have been a few significant revisions in body and home. 

First, the fun stuff.

It’s been two years since we got our wonderful wheelchair van - it has made travel so much easier and safer and better for us. It’s a 2014 Toyota Sienna with a ramp that deploys, and it even kneels like a bus when I’m on a flat surface, so the ramp isn’t at such a sharp angle. It was a steep learning curve - so many whistles and bells on these new vehicles! There are still a lot of things it will do that I haven’t learned yet, but I have the basics down. The reality is, I don’t drive a lot; my scooter gets me around to most places I need to go (grateful for small carbon footprint), but when I need it, it feels like such a blessing. 

Another wonderful change is my remodeled accessible kitchen in the cottage. It makes cooking so much easier and fun, with lowered counter, roll-in niches, and pull-out shelves. It has created a ton more space in the cottage, so moving around isn’t so challenging. Sometimes I just wheel round and round because I can!!  

I was also gifted with a much smaller wheelchair for use indoors - so much easier to maneuver than the big red beast! Laurie chose yellow for this one and calls it Bumblebee. I don’t run into door frames and cupboards or unintentionally tow things behind me nearly as much now. Again, much gratitude for our friends who are so so generous. 

We had a rubberized surface put down on the pathway between the front porch ramp and the cottage gate. It’s been wonderful for the rainy season - I’m not tracking in 20 pounds of mud and gravel when I come in the house. It's not the most glamorous aesthetically, but we chose function over form for this one. 

Health news

I’ve now heard several doctors refer to radiation as “the gift that keeps on giving,” and not in a good way. My mobility continues to deteriorate; I’m not able to take more than a step or two without assistance. I can still stand but have to hold on to something (hence lots of grab bars in the house), and the pain continues. Someone asked me the other day what my feet feel like when I stand. “Like boat anchors,” I said. They feel heavy and almost unmovable and pretty much useless. There are other things in the nether regions that are affected more and more as well - my bladder for one. Just yesterday my urologist attached a mesh sling to my bladder to - hopefully - keep the urine from sneaking out before I’m ready for it. Fingers crossed this will work because I’m really sick of the whole business.

I’m so curious about the radiation question, as it took my neurologist a long time to come up with a diagnosis after a lengthy process of elimination. Now it seems that doctors are more aware of it, so it must be more common. The length of time between radiation and symptoms is long (5-10 years!), so diagnosis is tricky. My guess is that the percentage of long-term survivors has increased in the last decade or so; therefore, more later term effects of treatments are showing up.

———

I've had a lot of fun drawing this year.

In September I had a nasty bout of cellulitis (infection under the skin) in one of my legs. With an excruciating headache, I was concerned about a blood clot, but I was probably on the verge of a systemic sepsis, so a midnight ambulance run was the excitement du jour. I was in the hospital for three days with IV antibiotics and some really awesome nursing care. It was a wake-up call for me to do better self-care - diet, movement, attention to wounds - and I’ve made some progress along those lines. I’m determined to continue on the path to self-care. Stay tuned!

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!

The Ways We Tell Stories

‘Come and be inspired,’ said the flyer

Women will tell their soul stories

sing their heart songs

gift us with hope and laughter

and well-earned tears

But I will not be there

Unable to breach the wall, stuck

at the bottom of the stairs - again - 

I long for the inspiration, 

the connection and camaraderie they will share but—

I cannot be there

If you are looking to me for inspiration: 

nope, not today

I do not feel graceful about this loss 

this being left out - again

My upper lip is not stiff

my chin is decidedly not up

I allow myself to wallow in bitchiness

and well-earned tears 

===============

september 24, 2018 . DRAFT

terri grayum