I am having the hardest time right now, darling. I’m in an attic apartment surrounded by boxes I am not able to unpack all by myself. I mean, I can do some of it, but the pain is so limiting right now. I am exhausted before I even start, and it all goes downhill from there.

Why is pain so debilitating?

Okay, I know the answer to that, but the question really is: why am I so debilitated by pain? I also know the answer to that – the medical answer. But the question really is: why am I so debilitated by pain? Why couldn’t I have rolled the good dice instead and not inherited this genetic condition?

Why is everything so difficult?


Right before my mid-October birthday we got the numbers back from our contractor. The our remodel – the beautiful ADA one we have been pouring our hearts into designing all year – will cost over twice our budget to build. Partly, this is due to the so-called “deferred maintenance” on our house. Meaning, all the shit we hadn’t taken care of because we planned to remodel is making our remodel our of reach. But mostly the cost is due to the sheer volume of space we need in order to make our house accessible. Wheelchairs need room to maneuver. Chair lifts need generous landings. All of that adds up, on top of the already inflated construction prices due to Seattle demand. And a bunch of tariffs put in place by the not-my-president.

Unhappy birthday to me, etc etc.

Ian and I talked numbers backwards and forwards until they poured out of our ears. With our single income household and me unlikely to make any money because of my disability (yet unlikely to receive disability benefits because I’m theoretically not disabled enough) the financials just didn’t work.

And now, less than two months after having our hopes crushed beneath the weight of reality (dammit, reality), here we are in an apartment as we prepare our house for sale.

It’s been, to put it mildly, kind of a shitshow.

The upshot of all this is that the apartment we’re renting is upstairs from our entire family’s best friends. When Iliana was in preschool, she got super close with a little girl. I got close with that girl’s mom. Turned out they lived three blocks away from us, and over the years we’ve just gotten more and more into each other’s business. Nowadays I can’t imagine my life without them, and I feel kind of bereft when they’re not around. So. Living upstairs from them has been kind of perfect.


A few days after we realized we needed to move, an enormous house came on the market that made us joke about buying it and creating a compound with me, Ian, my sister, and our friends. Half an hour later, that joke became a serious discussion. Now, two months later, it is a plan. That particular house has already sold (we all wept over that one) but the compound, co-housing, village-living plan remains. We have to sell our house first, or at least get it ready for listing so that we can submit contingency offers if any other enormous houses in our price range suddenly appear. But in the midst of my worsening condition, not to mention the worsening chaos of the entire planet, it feels like we’ve done the more difficult, more important part.

We’ve created a family for ourselves, full of people with needs and abilities that seem to mesh together quite nicely. We’ve found the support we need to get through whatever the next chapters of our lives bring.

So I guess we’re moving. I am, of course, enormously sad about that. The grieving is intense and the stress of moving and sale-prep is even more so. But there is gain here, as well as loss. There is joy intertwined with the grieving. There is the feeling of just right alongside the feeling of nothing is right.

Never in a million years did I think that being priced out of our house remodel would turn into something so positive and perfect, but here we are. And you know what? I think it’s going to be more than just okay.

image of a stack of boxes that look like a body with a face making a surprised face, via Wikimedia Commons

One Comment

  1. Dear Celeste,

    Forgive my noisiness – I came across your website because my husband and I put an offer on your home and Google brought me here. I love to read so your work was nice to discover! But then I came across this post – Rachel told us you were planning to “downsize” but understand now it has to do with other reasons, truly sorry to hear. Unfortunately my husband and I know all too well the difficulties with health issues affecting mobility, having family needing to make house adjustments and eventually had to move out too sadly, so this blog post really hit home!

    I wish you and your family all the best in finding a new (enormous!) home and starting a new chapter.

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