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!

Under Construction? I am so Over Construction!

The walls look a bit gray here,
but they are a lovely light lavender.
There's a skylight above.

I didn't dream I would still be writing about cottage construction in June, but here we are, still in the midst of it. The good news: I have a lovely, functioning bathroom, with accessible shower, toilet, and sink, plus some storage. It is 95% done, just a few tweaks and some finish work to do. It's such a joy to have this - it has made life much easier for me and for Laurie. Now I don't have to use the house bathroom multiple times during her work day, which is quite disruptive to her and the children.

However, the outside is undergoing an upgrade as well. Because we permitted it as an ADU, there are strict fire codes: siding needs to be upgraded which requires a lot of things I don't understand. AND, as I learned last week, we need another layer of drywall on one of the interior walls, which will require another breakdown of all the things I so lovingly put back together recently - bookshelves, decor, kitchenware. And it will again require me to be out of the cottage while the work is being done. To say I'm cranky about this is a great understatement. I have no PG-13 words for it. It is supposed to take a week. We'll see. Liza and I may escape to the beach.

The possible silver lining, unless we run out of money, is that it will be an opportune time to turn the kitchenette into an accessible, more workable kitchen for me. We've been picking lots of brains and scouring websites to see how we might do this on a limited budget. I need lower counters, lower cooktop...you get the idea. 

I'm rather fond of this Star Trek bridge look:

Make it so!

If you have any ideas or resources to share with us, feel free to comment.  

Here’s an additional bathroom/shower photo: decorative tiles I had made from some of my aquarium photos.

Anemones and jellies in the shower.

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??