Moving the goalposts

Chronic illness or not, it's your game.

When I was an itty bitty person, my uncle Jewel ran the family business from the (slightly illegal) in-law apartment under our house.

The night before I started first grade, I remember going down to the office to see Jewel¹. The tiny room was lit by a single large desk lamp; there were cubbies lining one wall, holding stacks of paper including the letterhead he had designed himself. He told me that he'd recently ordered a lot of custom stationery from Los Angeles, and he pulled out a stack to show me. They were a Lisa Frank generation fever dream: black paper with tiny white polka dots, lined teal, lavender with white graph squares, hot pink with white stars, and every conceivable permutation, all with matching envelopes². I shared his palpable excitement, weighing the heavy paper in my hands.

In retrospect, this is clearly my origin myth. Proust had his madeleine; I have stationery.

I like being organized, I love feeling organized, and I love looking organized more than I love feeling organized. At any time, I will invariably have a wall calendar, a desk calendar and a paper calendar at home and one of each for work, and probably around 40 organizational and productivity apps I'm evaluating or using or trying to get myself to use or trying to make other people use or just haven't deleted yet. I have every color of dry erase pen, Sharpie, and Pilot g2 0.38mm³. Until I got sick, I used these tools to manage a very complicated family with four different personal calendars and again as many extracurricular and sports calendars and my grandfather's calendar and of course my work calendar and at least 8 other sub-calendars I made up.

I complained incessantly about how exhausting it was because it was exhausting but of course I also liked having important things to put into a calendar and cool calendars to put them in. I lived by the lists I drew up--packing lists, grocery lists. When one of my children suddenly informed me in the car at 7:50 AM that today was the day they were supposed to go on a Segway tour of the secret catacombs under Mount Rushmore with Barack Obama and Jimmy Carter and they were going to need two $10 bills, a grappling hook, and a bag lunch by 8:15 I would invariably and tiresomely repeat the sentence if it's not written down, it doesn't exist⁴. If an event was not on any calendar or on any list, I couldn’t be expected to be in any way prepared. I had not written it down, so it was not happening.

What if I didn’t write anything down because nothing was happening?

I spent a lot of time, after I got sick, making elaborate lists and adding events to calendars. If I added a birthday party to the calendar, would I feel well enough to go? If I created a careful, step-by-step list of what the kitchen needed to get it back on track, would that give me the energy to go clean out the refrigerator?

My day went like this:

1. have coffee⁵

2. shower and get dressed

3. set up with bed desk and herbal tea

4. write a detailed list in several pen colors of what needs to get done today/this week/this month

5. drowse guiltily for the rest of the day

You'll be seeing a few problems, among them that items 2-4 take a lot of energy and thus were often the only things that happened, and that was on a great day. I didn't want to see these problems. Lists, calendars, post-its—it sounds silly, I know, but they're my operating system. They're how I get things done. And if I'm not getting things done, what am I really doing? What's the sense in writing down the things I'm likely to get done today?

The least good days were like this:

• have coffee

• take pain medication at regular intervals

• watch Chopped⁶

• think irritated thoughts at the Chopped contestants who attempt risotto⁷

• drowse guiltily for the rest of the day

What would be the point in expending finite energy writing any of that down? Was it any worse to page back through my agenda and see that, no matter what, I definitely accomplished a lot of guilty drowsing?

But, if I didn’t write anything down, was I really doing anything? If I wasn’t doing anything, what was the entire point of me?

My man Prufrock tells us he has measured out his life in coffee spoons. What if you don't have any spoons at all? What are you even measuring?

So I stopped measuring. When things got really real for a minute there, and I left for the emergency room and came back with a terrifying diagnosis and a lifetime of chronic pain, I stopped making lists, which means I stopped really making plans. Just shut down the operating system. You couldn't tell, on the outside, but that's not a good sign. You should have some plans, even if you mostly plan to take enough pharmaceuticals to make life tolerable but not too interesting.

A little bit after that I discovered A New Craft.

Did you know that there are people who buy Filofax planning systems and Day Planners and monthly calendars and other binders/folders/configurations that are equally expensive and decorate the calendars and the to-do lists and the note pages and/or design new ones and/or add photos?

Reader, I bought one without knowing one more thing about this business. And I ordered the sparkliest one I could find. It was basically an absurdly expensive Trapper Keeper⁸.

However, when once I had my Filofax A5 Saffiano as well as a quantity of supplies and accessories whose dollar value is more than you can imagine, I discovered something interesting. It is actually hard to write down dozens of To Dos and Calendar Appointments and Goals on a piece of paper that has a lot of die cuts or stickers or washi tape or beads or, like, feathers on it.

You could write, let's say, one line item for the day.

The goal you set out at the beginning of the day doesn't have to be what you ended up accomplishing. You can just be glad you made it to the end of the day. You can always move the goalposts. It's your game.

1. My mother had sent me down to show off the centerpiece of my cool First Day of School outfit: a single silver acrylic glove, like the only pop star who mattered then or now. Can you imagine what must have happened when I rolled up to First Grade with a silver glove on my left hand and a Garfield lunchbox in my right? I don’t remember, so the only cool moment I have ever enjoyed is lost to history.

2. I can guess exactly what my grandfather said upon discovering hundreds of dollars of extremely cute stationery that could not have had any possible application in administering a business that provided maintenance and janitorial services to grocery store chains and office parks. I can also safely assume that he still claimed it as an itemized deduction on his income taxes.

3. The best rollerball gel pen available to man; fight me if you dare but you best not miss.

4. Then, of course, I would angrily tear over to Walgreens and buy a $100 store-brand grappling hook and a bad sandwich, neither of which they were going to need anyway because President Carter thoughtfully brought enough grappling hooks and homemade pot pies for everyone.

5. I don't make the cappuccino. I live with the world's most exacting and devoted barista and I am his only client.

6. I trust all Chopped media except the amateur competitions, like teens or firefighters. The judges don’t feel comfortable being mean and it angers me. No truffle oil, no exceptions, no matter how many people you saved in that fire.

7. or puff pastry.

8. I used to have a Lisa Frank one, obviously. Imprinting is real; ask the baby duck who thinks a forklift is its mom.