Spoonie Life and Sporkie Workarounds

What is Spoon Theory? What is a Spoonie?

I’ve been candid about my neuro-atypicality and mental health, and about some of the details about life with chronic illness and chronic pain. Adam’s been candid about his own challenges with mental health and neuro-atypicality, too. We rely on the Spoon Theory a lot, checking with each other to see if we have the spoons to do something, describing ourselves as not having the spoons to do this or that. Most of the time that just means putting something off for a day or two until the usual level of spoons returns. Occasionally it means putting something off for a longer period of time or asking the other person to do it.

In case you’re not familiar with the spoon theory, it’s a way to describe living with chronic illness to someone who doesn’t have that experience. Someone who is a spoonie (someone living with chronic illness) can expect to have a limited supply of spoons, where spoons represent the physical or mental energy you use to do an activity. That doesn’t mean that a non-spoonie can’t wear down or burn out, just that they don’t expect to be knocked on their ass by exhaustion, whether mental or physical, because they made their own breakfast, for example, or took a shower. 

How Many Spoons does a Spoonie Have?

Taking a shower might cost you one spoon. And on a typical day, it would cost me one spoon, too. On a bad day, though? If I’ve slept badly or am in a little more pain than usual, it might cost me one and a half spoons. If a “non-spoonie” needs a little extra energy and has to borrow a spoon from the next day, it’s not going to be a tremendous disruption to their lives. Well… for me, it is.

Before I came to the hospital, just taking in the groceries might require the rest of the day to recover, and sometimes part of the next day. Actually going to the store and getting my own groceries, even without having to worry about COVID would have cost so many spoons that I would have been doing only the bare minimum for at least a day or two after, so I had to have help to do that.

On a Good Day

A good day for me begins with a “4” on the pain scale. My pain, according to the pictogram “distracts me,” but I “can do usual activities.” Never mind that what falls under the heading of “usual activities” has been significantly curtailed as my regular pain has increased. Or that, to be at a “4” when I wake up, I take a bunch of medications. Or that if I’m really, really honest, I’m having more “5” days (pain “interrupts some activities”) than four lately. That kind of honesty with myself or my health care team causes emotional pain that is at least as bad as the physical.

If I do only the minimum on a good day, the day will take between twelve and fourteen spoons. That means doing nothing but the basics: getting up, all of the basic daily hygiene for the day, three meals, feeding the cats, managing my meds and going to bed. Every other activity that I do is going to cost me more spoons. Read a book? A spoon. Talk on the phone with friends? One or more spoons depending on who I’m talking to. Spend time writing? At least two spoons depending on how much I hurt, how long I write for and how well it goes.

And that doesn’t account for chores like laundry or grocery shopping. It doesn’t count appointments I might have, or anything else.

On a Bad Day

If I sleep badly, I start the day short of spoons. I make compromises. Maybe I skip my shower or skip a meal. Or I spend a couple of extra hours just lying in my bed. Maybe I have a movie on, probably something I’ve seen so often I can recite it from memory. Definitely nothing deep, complicated, or with subtitles.

It also means that my pain level goes up, which means everything costs more spoons. And if I’m in pain, I don’t sleep as well, which causes more pain and a greater and greater spoon deficit.
It’s no surprise that I’m very careful with the way I spend my spoons. I want my life to be about more than just existing. 

So What Does my Morning Look Like?

• Wake up to take medication that has to be taken in the morning on an empty stomach (one hour before or two hours after eating) and a certain number of hours apart from other medication.
• I may also make a small pain assessment just in case I need an early morning dose of over-the-counter pain medicine.
• Then I might go back to sleep for an hour or two, until second wake up.
• Second wake up is the big one. But it’s not “wake up, take a shower, get dressed,” like it is for a non-spoonie. It’s: wake up, move enough to loosen the joints so that I can be stable when I stand up. 
• Then get out of bed, grab my walker, and take a more thorough pain assessment to start the day.

Pain Assessments

Those pain assessments are really important. If I’m having pain that’s going to cause me to have trouble pulling a shirt over my head, I need to decide whether doing that will hurt more or less than buttoning a shirt. If I’m going to be spending a lot of time in my wheelchair that day I need to choose clothes that are both comfortable for that posture and that allow me the freedom to wheel myself around. That right there–the stretching, the self-assessment, and so on–costs me two or three spoons, and I haven’t even started my day yet.

Everything is finely calculated to conserve enough energy to get basic tasks done that day, whether you’re having a good day or a bad day. On a good day, I might have enough spoons to get through my daily tasks and even have time and energy left over to do something fun, or maybe even just relax in the evening, so that, hopefully, the following day will be a good one, too. If I’m having a bad day, I might not have enough spoons to do basic things. But I still have to do some of them. I still have to eat. And preparing a meal takes energy. Even if it’s just a sandwich. 

This is all assuming I start the day with any spoons, which, most days, I do. Then again, if it’s a really bad day, I might be starting the day paying down  a spoon-deficit from the previous day.Anyway, that’s spoon theory in a nutshell.

Except that the spoon theory is missing something. It’s missing sporks.

What is Spork Theory? What is a Sporkie?

You know: sporks. Those utensils that are neither fork nor spoon, and kind of get by, but can’t completely replace the either utensil. The ones that you usually get when you go to some fast food place where some people would eat the food with a fork and others with a spoon. 

Do you know what sporks were first used for? Ice cream. The ice cream spork was invented in the 1800s to make eating ice cream easier. See that? Easier. And living my life as a spoonie requires a lot of sporks. 

What it Means

For me, a spork means sometimes eating canned or frozen fruit because my fingers won’t always allow me to peel an orange. It might mean paying the disabled penalty and buying pre cut melon or pre-peeled oranges–yes, the ones able-bodied people threw a big enough fit over that Whole Foods called them a mistake and quickly stopped selling them.

(We can discuss the economic penalties of being disabled another time. For now let’s leave it as it’s estimated that disabled people need almost thirty percent more income, or almost twenty thousand dollars on average, to obtain the same standard of living as an equivalent household without a disabled member.) 

The Guilt of the Short-Cut

And yes, I am bothered by the additional environmental impact of using paper plates or buying pre-cut vegetables. But if it comes down to a choice between being able to eat a decent meal without having to also spend energy on doing dishes? Or the choice between having canned/frozen fruit and going without entirely? I’ll use my spork. Because there are days when I can’t even manage the spork. And on those days, I might end up eating a few handfuls of Honey Nut Cheerios or a couple of spoonfuls of peanut butter from the jar and a fruit cup. Stuff I don’t even actually need to get out of bed for, because, at that moment, even making cup noodles or a peanut-butter- and-jelly sandwich is too much to manage.

Being sporkie allows me to keep the actual spoons in reserve for the big things. It allows me to have a life that is more than just “getting by,” or “surviving.”

A Day When I Needed a Big Spork

My life was already circumscribed. But dealing with the lingering effects of my recent bout with COVID makes it much worse. And so, the day before I wrote this, I had to make a very difficult request of Adam.

I had to ask him to take on a couple of tasks that are typically mine. That we’d talked about and I’d said I’d take on. And I hated doing this.

That’s the thing about how we share the work here: Adam and I haven’t ever really negotiated the division of our responsibilities for 2 Rules of Writing. I’ve described our division of labor as “very democratic, very egalitarian.” We’ve divided the labor so that each of us (mostly) does things we’re already comfortable with. We can do parts of each other’s jobs when we need to, but we usually don’t need to. I take on a lot of the organizational and administrative tasks. This particular week, this meant drafting a couple of emails.

But I couldn’t do it. It’s not that they were difficult emails to write. I just couldn’t get my brain organized enough as I looked at the computer screen to put my thoughts down. I even tried switching to a pen and paper to outline the major points I needed to make. It’s a strategy that sometimes works, but hurts (physically).

So I made the uncomfortable phone call. Explained the situation. Asked for help with a specific task–drafting the emails. I explained what else it meant besides this one task. That brain fog means I need to rely even more heavily than usual on my lists and written reminders. That I’d probably struggle for a while with some things that I’ve just always done for 2 Rules. I talked about how sustained attention might be difficult, and the impact it might have. How it might make things like writing my columns more difficult for a while. And we talked about what that meant: more time to write them, more conversations to help with bullet points and outline, possibly backing off on some of the tough topics I usually like to tackle.

Writing an email to Adam to explain that I didn’t have the spoons to write an email to our readers would have taken a part of a spoon. I’d be shortspooned for some later task. But sometimes when I don’t have the spoons for something, I find I still have the sporks for it. Meaning that there’s some lesser activity that accomplishes the same task, just not in the way I’d like. Calling Adam and asking for help? That’s a spork. It accomplishes the job, or part of the job (in this case, getting the email-task reassigned).

 What was so difficult about contacting Adam for help? Like other forms of trauma, the physical pain is often the least of it.

Being a Spoonie means Living in Dread

Consciously, I knew how Adam would respond to my requests. But in the pit of my stomach, I was thinking back to the last time I had a fibro flare that involved serious brain fog. I reached out to my then-colleagues and told them I needed a few things: for someone to check in with me with reminders, to double-check my work, to help me break tasks down into smaller pieces. This was a temporary situation and I just needed help getting through it.

I said all of this. I talked about the things I would be doing to help reduce the impact of my fibro flare on them, like putting extra reminders in my calendar and doing more outlining of essays before I wrote them. 

Two of my colleagues responded by lashing out and berating me. They accused me of not being up to the job. Of demanding unreasonable accommodations and help from them. And they suggested that the fibro flare, and all that it comes with, was my fault. Something I was doing to inconvenience them. It was a stunning display of ableism. And when I advocated for myself by saying that their response was ableist, they threw that in my face, too. This was a group of people who purported to be very big on taking care of mental health, and on self-care in general. But when my needs changed just slightly, it was too much for them.

Why a Spoonie Conserves each Spoon

That sort of thing is always in the back of my mind. One of the reasons I conserve my spoons so carefully is to avoid the danger of a situation like this. Because it’s when I’m at my lowest point, and I am drawing on my last reserves of energy to ask for help that someone might lash out in this way. Depriving me of the help I need and of the last bits of energy I had to draw on to reach out for help in the first place. 

What do they care, right? It’s not their problem. It’s mine. Which is part of the reason I’m writing this.

Spoons are just a tool for explaining what it’s like to live with chronic illness. They don’t really tell you anything about how it’s done. About the calculations and bargaining and constant assessments that go into managing spoonie life. About the times when you handle everything right and your judgmental colleagues still treat you more like a disease than a person. 

When a Spoonie has not Enough Spoons

Maybe I need grapefruit spoons for the mental energy that gets spent on those calculations. And iced tea spoons for the energy I use trying to plan ahead for the bad days so that I don’t have to dip into the next day’s spoons. I guess it would have to be teaspoons to measure the times when I’m doing something else and I remember that, as long as I’m in this hospital I can’t even get up and make myself a cup of tea; I have to call the CNA. And maybe I should use those kebab skewers that I have in my drawer even though I never barbecue to count the mental toll it takes to deal with the constant pain and ceaseless calculations and bargaining that’s done throughout my spoonie day. 

And there’s no soup-ladle big enough to represent the frustration at calculating whether doing a little extra on a good day to prepare for the next bad day will cause a bad day. Or the grief at just not being able to [fill-in-the-blank], sometimes. Take a walk. Practice viola. Visit with friends. Using my sporks might leave me a little extra energy for when these feelings arise.

Being a Spoonie means Always being on the Verge of Saying…

I can only speak to the experience of becoming disabled as an adult. I was in my forties, when I finally got to the point where I couldn’t pretend I wasn’t disabled anymore; couldn’t just bite my lip and get through things; or even use a folding cane, that I could tuck up into my backpack if I didn’t want anyone to see it.

No one taught me how to actually be disabled. Taught me about the parts that go beyond “here’s how you use a walker,” and “here’s what you need to do to get stronger.” Living, really living, not just existing, or surviving, in a world designed for abled people, when you don’t fit, requires more than just “how to get into the car/prepare your meals/take a shower safely”-type instructions. There’s a whole world of human experience, relationships, and grief to navigate. Some of it on a daily basis.

So little by little I’ve learned to use my sporks. And they give  me the energy to do a little something more. Maybe that something is folding my laundry. Maybe it’s having a difficult conversation. And maybe, just maybe it’s something that brings joy to my life. Joy that I can rely on to help me keep going on the days when I feel like I don’t even have enough spoons to get through the day. 

Then again, some days I just want to say “fork it.”