Hooks

Today I walked into Fritz's closet and found a bunch of hooks that I had bought at Ikea – and was reserving for my own use – installed in Fritz's closet – with clothes and hats and whatnots hanging on them.

I was quite irritated. I'm not sure, however, if I'm irritated at myself or irritated at Fritz. 

In Fritz's defense, the hooks had been sitting in the garage for a few years, because I just never quite found the perfect time or place to install them. I bought them knowing that 1) they were affordable and 2) they are were cute and 3) I'd find a place for them eventually. I also know that Ikea discontinues items and I'm picky. I've learned over the years that if something at Ikea is affordable and I like it, I should buy it because otherwise I will spend years feeling sad about not buying it when it was available. Examples: the Molger line of bathroom furniture (that was useful for so many things outside the bathroom!) or the Roy Pall (foldable stools from the early 2000s, possibly sold under another name in the States, but I can only find the Swedish name in the old archived catalogs here). 

Anyway. Where was I?

Right! Fritz used my cute hooks in his closet. 

And you might be wondering: what the heck, Ann? How can you buy hooks and then do nothing with them for YEARS.

But I did do something with some of them. I installed three in the kid's bathroom for towels. I was just waiting for the opportunity & time to use the other hooks! 

The thing is, I'm not sure whether to be mad at myself for not acting faster, or jealous that Fritz has time to go about installing hooks in his closet. Often I wonder why I don't "get anything done" and then I remember that I spend A LOT of time doing stuff for other people. I have a hard time putting myself first, even if it is as simple as hanging up some hooks that I think are cute. I mean: notice that the hooks which I did hang were hung in the KIDS bathroom. Stuff does get done around here, I do DO that stuff, I'm just super lousy at prioritizing anything that is about me. 

One of the greatest experiences in putting myself first in the last few years was when I was working full-time outside of the home. For years, I had heard other mothers use full-time jobs as an excuse for why they couldn't do things, "I can't volunteer because I have a full-time job." "We need a housecleaner because I have a full-time job." I never felt like I could use these excuses, even though I'd mentally retort with, "AND I can't volunteer because I already volunteer ALL WEEK LONG." and "I need a housecleaner because we are at home ALL THE TIME." On the one hand, I do believe my retorts are valid. But in everyday life, I was never comfortable using them as justification for anything that would benefit me. However, when I finally had one of those full-time-outside-the-home jobs, I was really comfortable saying "no" in a way that I was never comfortable before and have never been comfortable since. I liked that. And you know what? I was nicer to myself when I was working full-time-outside-the home. In fact, many days I wanted to laugh at how much easier it was to work full-time, and how quick everyone was to be impressed by me, even when life working-outside-the-home was EASIER than life at home. I ate at restaurants, I ran errands on my lunch break, I went to coffee shops by myself. I even got to daydream without interruption on my morning commute!  It was great. HAHA! 

I think about that a lot these days. I'm running two businesses these days - the Etsy business and still doing architecture. But I'm not doing either of them the way that I would work an outside-the-home job. All the work takes place at night, on the weekends, and crammed into tiny corners of the day. The days themselves are filled with the household work, the kid support, the aunt support, and etc. The pandemic changes over the last 15 months are, in many ways, a familiar throwback: I remember those days of super intense parenting when there were toddlers & babies in the house. I know how to work with fractured time and distraction. But that doesn't mean I like it. And I certainly would choose to go back to pre-pandemic life if given the option.

But mostly, what I need to figure out, is how to give ME time and priority. This is not about self-care as it relates to some sort of consumerism. This is about ME,  doing the stuff that I want to do, instead of the stuff that I have to do (for everybody else). I often joke that if Fritz is cleaning the house, he starts by cleaning his closet. Slowly. Meanwhile, I am cleaning all the public areas. In case it's not clear, cleaning ones' own closet - slowly - feels really freakin' indulgent to the person cleaning the kitchen and the bathrooms and moping floors and scrubbing down filthy door handles. This personal closet cleaning by Fritz is not really a joke, it is a fact. It is indicative of the way that we can both be "working" and we are each working in a different way. STILL. I just need to figure out how to work like him. Or I need to ask him to work more like me. Or something. And then, as I chastise myself for not making Fritz work differently/being a poor teacher of my spouse, I feel annoyed at myself that I am always laying the responsibility for change at my own feet, as though all this is my fault. Why can't Fritz take this initiative without ME? Oh wait! He did! That was when I had a job-outside-the-home.

Hm.

Salvage

This week, my aunt and I went to a biopsy appointment (for the suspected cancer found in the mammogram). My aunt's mobility is severely limited by the ALS at this point. Her fine motor skills are mostly gone, her gross motor skills are tenuous and unreliable. We had to transfer between the wheelchair and the car – or gurney – or mammogram stool – about 7 times over the course of 6 hours. And that was about 2 transfers too many. I was pretty livid at the medical staff when they wanted to take "just one more mammogram" after the biopsy "to check the marker."

Nothing is simple when one is essentially wheelchair bound. At the end of the appointment, I used the gait belt to lift her into the passenger seat of my car. She's so tiny and the gait belt, which goes around her waist,  needed so much tightening - and then, still, it slid up her rib cage, heading for her newly created incision... Ack! HORRIBLE! At one point, I glanced up at the car next to us to see an older gentleman transferring much more easily between his wheelchair and the car, and I wondered how long ago that was us. Three months ago were we able to transfer that easily? Or last week? Or just this morning?

It was extraordinarily strenuous and tiring day. 

Without a doubt, I feel that I've been shocked by the way ALS has robbed her of ordinary movement, strength, and balance...but (perhaps more surprisingly) I also feel like I'm really growing a lot in my understanding of disability.

I cringed a bit to write "disability" because I know that advocates like to use the term "differently-abled." But in the case of ALS, which grows progressively worse, it feels important to acknowledge the reductive nature of the disease. 

I'm not quite sure what I will do with my new-disability-enlightened-eyes, but I do hope that I can salvage something from this experience that can help others in the future. Sometimes I find myself surprised by how oblivious society is to disability. Even medical staff can be impressively clueless.  I'm not sure if that reflects a lack of training, a lack of respect, or a lack of exposure...? As far as training goes, I've spent a good amount of time looking at accessibility diagrams and designing "accessibility" into the buildings that I've worked on as an architect, but after having this hands-on experience, I wouldn't pretend that THAT kind of training is the same as exposure and experience. I think as a patient, my aunt often takes other's clueless-ness as a lack of respect, which is understandable, but serves to make her even more frustrated. Among the wisdoms that come out of experience and exposure, is acknowledging there are no easy, simple solutions.

Nonetheless, I wouldn't mind if my future ability to apply these lessons was a little less in the trenches. 

Drone through the Window

A delivery service has been filming a commercial in our neighborhood. There were futuristic alternative fuel vans driving around, as well as delivery drones. The kids were pretty excited, naturally. I will add that the sight of a drone with 3-4 foot wing span, flying toward a front porch, ducking under the porch to deliver/drop a package was NOT exciting in a happy, anticipatory way. 

I thought about the old cliché of the neighborhood kid, hitting a baseball through a window and I wondered if the new cliché will be a delivery drone crashing through a window. 

Maybe we will all need to put drone stickers on our windows to warn them away – sort of like you need to do with birds who sometimes attack their reflections?

Prismatic edges

This week was such a tough week. As usual, I was not admitting it to myself. I was giving myself pep talks, thinking that some people have it really much worse, and taking deep breaths to hold everything together. 

And then, one evening, after I finished downloading to my support system, I started to experience this weird eye problem where I had blurry circles in my vision. They were surrounded by prismatic colored edges. Outside the blurry spots, sight was good. So, I diagnosed myself with dirty glasses - cleaned my glasses - and I went upstairs to make some headway on an architecture project at my computer. And you know what - I couldn't see around those darn blurry spots in my vision! After about 5 minutes, I started to get a little panicked - but then rediagnosed myself with stress related vision problems, laid down (- could still see the prismatic edges of the blurry spots with my eyes closed!-) but within about 20 minutes the blurry spots were gone. 

I have to tell you: it scared me. And it really makes me think. I just need an outlet for everything that is going on lately. I've been so hesitant to blog over the last 5 years! It's good therapy for me, but my life is so entangled with the lives of so many other people! Also, there's this lopsided aspect to blogging where you feel like you talk and talk, and nobody talks back, until one day when someone you never hear from - but who has been reading your blog - suddenly enters your life with all sorts of "wisdom" and you think, wait a minute....I'm not sure how I feel about your expertise on my life based on my blog...also, why am I the only one sharing? 

Another stumbling block: how can I say what I want to say here without upsetting or betraying others?

...Well, after my blurry spots with prismatic edges, I do believe I will go ahead and share for a little while. It will be therapeutic, until it is not. And then I will stop sharing. Also, some of the major players in my life right now are really unlikely to read this blog, so I will take a calculated risk that they don't visit. 

Back to this week. So, this week, as many weeks, the drama seems to revolve around my aunt, who was diagnosed with ALS about 19 months ago. ALS is a progressive, terminal, neuromuscular diagnosis with a typical 2-5 year prognosis. To catch you up, as quickly as possible, I should mention the following facts: she lives within about 30 minutes of us. Her husband passed away about 6 years ago and she has no children. She lives by herself. It is her profound wish to remain living in her house and die at home. This last fact cannot really be overstated. It is so thoroughly embedded in her (professional and) personal identity over the decades that any suggestion of anything else will get the suggestion-maker weeks of cold-shoulder treatment. This fact also drives every decision that gets made, as we all do ludicrous gymnastics to honor and respect this wish. And I would LIKE to say that she is very thankful for all our help. But she is NOT particularly grateful; mostly, she is angry. And she behaves as though we are the bad actors in her losses to ALS.

This week, she had an appointment with a cardiologist. She has had some heart trouble in the past. A few months ago her pulse started racing, as it has before: atypical atrial flutter. Interestingly, with this flutter, she experiences almost none of the symptoms that others would experience, like, say, shortness of breath. And she is constantly seeing doctors for the ALS, so: going to the cardiologist was a mosey-on-down-to-the-cardiologist type affair.  Well. It is actually is not much of a mosey these days; she needs a wheelchair to go anywhere and transferring (between, say, the car and the wheelchair, requires me to lift her feet and place her hand on the hand holds and perhaps lift her a bit by the hips.... You know, really, the moseying was our attitude. And it turned out to be a pretty fake attitude BECAUSE:

On the way to the cardiologist, she informed me that a mammogram and ultrasound scan that had been done last week showed carcinoma with some abnormal lymph nodes. This was not totally unexpected (the ultrasound and mammogram had been done for a reason), BUT if you are on the way to a cardiologist with your neurologically compromised aunt and you find out she has metastasized cancer, it feels like a Bit Of A Thing.

The cardiologist, unsurprisingly, suggested that we do nothing for at the flutter. Any option for treatment would include anesthesia, which is highly risky given her state.

It works this way, right?  For most of us: our bodies fail at the end of life and diseases snow ball. It can feel like a lot to people on the outside (like me); but imagine how it must feel to the person themselves? Well, one really can't imagine.