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Spoons, Marbles, and Other Finite Resources

  • Posted on November 30, 2012 at 9:00 AM

I was first introduced to the spoons metaphor in 2010, so when the family member who “diagnosed” me with fibromyalgia (it’s not official, because she can’t do the treatment plan) started talking about the implications and used a metaphor involving a jar of marbles, I knew exactly what she was talking about.

For those who don’t know and don’t want to follow the links, here’s a brief description: Everyone has a finite amount of resources with which to get things done in a given day. For most people without disabilities, the primary finite resource is time—we don’t have enough time to do everything we want to do. For many people with disabilities, the primary finite resource is energy, partly because we may have less energy than the average person and partly because the things we need to do require more energy of us than they require of the average person. This energy can be seen as a form of currency—the original example was spoons, but marbles or anything works just as well. If you don’t manage your spoons, you run out of energy before you run out of time. A person with fibromyalgia may have fewer spoons to spend due to their fatigue. A person with fibromyalgia may also have to spend more spoons to get a given task completed than the average person. So, in short, a person with fibromyalgia can get less done.

Even without bring up the marbles/spoons analogy, I knew that with fibromyalgia I would need to come to terms with productivities levels that were less than what I used to be able to do. The last few months bear that out.

Along with finding that first spoons post, I also unearthed some others.

The first one that caught my eye was the third in a three-part series of posts in which I acknowledged back in 2010 that I was noticing a decline in my abilities:

My energy (and yours) is always limited, and some days it’s more limited than others. My energy also varies during different times in the day.

Along with limited energy, two other finite resources affect my ability to accomplish tasks. One is my ability to concentrate. Unfortunately for me, sometimes having energy doesn’t mean I’m able to concentrate. Sometimes being able to concentrate doesn’t mean I have energy. The most mentally challenging tasks have to be completed in those periods of time where having energy and being able to concentrate intersect. The other finite resource is time. This is significant, because there are tasks that are time sensitive and those that are not.

The second one involved another series of posts called “Imminent Burn-Out?” in which I committed to taking better care of myself…and then I got too busy to worry about it.

So, I feel like I’ve come full-circle. It’s time to take a good hard look at my spoons and to figure out how much/little I can do with them.

Imminent Burn-Out? (Part 4—The Next Word and Resolutions)

  • Posted on November 21, 2011 at 12:00 PM

Again, I knew I was adjacent to the autism spectrum, I read about Rachel’s experiences, and I panicked.

The threat to autistic children is real. The threat to autistic adults is real. Combine the two and the threat becomes even stronger. And these threats apply directly to my family. This is why I fight. This is why I advocate. It’s not the only reason, of course. If my family was suddenly safe from all future threats, if we got a pass on all the discrimination and prejudice, well then I’d still fight—because nobody should have to face this kind of threat. But we do. It’s real. Right now, my boys cannot advocate for themselves on this level. They cannot face down CPS and win. They shouldn’t have to; I shouldn’t have to. But I had to and I did, but if I had to do all over again, with the loss of functioning that Rachel described, I would lose. And that possibility is incredibly scary. The consequences for my children are terrifying.

Reading Rachel’s words, I felt this terrible ticking clock hanging over my head. I drive myself hard—too hard. I know that. Everybody who knows me (in-person) knows that. Periods of burn-out, of being too tired to keep up, of running out spoons, of hiding in my basement office to avoid the very loud noises my children make when they’re all playing in parallel—these things are inevitable, and as long as Mark and I are a team and I can keep up my end of the bargain, they’re just part of the flow of our lives.

But what if I couldn’t keep up? What if it wasn’t temporary? What if it stretched on for months or years? Pardon my language please, but my thoughts could best be summed up: Oh shit! Is that going to happen to me?

I kept reading. I finished The Uncharted Path and moved onto Blazing My Trail and…I kept reading, sighing in relief. While I don’t mean to minimize the significance of burn-out, the dramatic shift in abilities got a new explanation in Blazing My Trail. They were due, to a great degree, to a medication she took that made things worse instead of better.

The relief was palpable. I know with certainty never to take that drug. Besides, I’m horrible about taking daily medications. And I try medication only as a last resort—or after significant experience that it will be necessary, such as with bronchitis and antibiotics. And, well, the only time I found a psychological medication (for example, an anti-depressant) that didn’t provide more side-effects than positive effects was when I had that terrible reaction to a birth control shot that lead to a serious case of post-partum depression. The drugs then were just a temporary fix to get me by until the birth control hormones were out of my system and it was only effective because my depression was more poignantly chemical than usual and far stronger than I usually experience.

So, avoid drugs—check.

But, that’s not enough. She also described a plan that helped her regain abilities she’d feared she’d lost forever. It was simply a matter of taking care of herself and being responsive to her distinct needs.

Now, that’s not as easy or as obvious as it sounds. Not for me. I’d always thought that I should be my lowest priority, after family, God, work, school, friends, etc. I knew I had to sharpen the saw and all that…but that didn’t make it a priority, did it? Not really. Certainly not.

This scared me into reevaluating and reassessing the importance of my own well-being. Because, yes, actually, I am a priority. As a caretaker, I need to take care of myself so I can continue to take care of others. It seems obvious. In fact, I knew it, on an intellectual level. Reading Rachel’s story has made it visceral.

So, take better care of myself—check.

I can’t stop pushing myself. There’s too much to do. But I don’t have to push myself so hard that I break. I don’t have to ignore my own needs and well-being. In fact, if I pay attention, I’ll be able to do more, because I won’t get quite so tired.

But, wow, was it a scary, rocky trip—and I didn’t even have to live through it!

Imminent Burn-Out? (Part 3—My Panicky Aftermath)

  • Posted on November 18, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and then, I read Rachel’s The Uncharted Path. I read about how she once had a lot more functioning capabilities, which she lost, and how she attributed that loss to burn-out.

I admit, when I first read that, I panicked for a good, long while. I wrote a lengthy post in near-hysterics about what Rachel said and what I feared. The post was highly emotional, a bit incoherent, and I asked my husband for his opinion before posting it. He agreed that I shouldn’t post it at this sensitive juncture (a reference you will either understand or not).

You see, it’s not that I’m afraid of being disabled. I’m not afraid of losing the ability to do things that I can do now. For me, unless I die very young, that’s inevitable. I’m a writer and I’m already showing signs of arthritis. I’m 32 years old. I use my hands and brain, almost exclusively to any other part of my body, for hours at a time several times a day, every day. So, unless I die young or arthritis is cured, I will lose the ability to work as I do now. I’ve looked ahead to that future, acknowledged that it will slow me down, and committed myself to not letting it stop me. If I lose enough functioning to be diagnosed on the autism spectrum, I can do the same. It’s not me I’m worried about.

There is a powerful, local government agency that has the authority—with few checks and balances—to remove children from the home of their parents. Here it is called Child Protective Services. For most of my teenage and adult life (the parts of my life that I was at all cognizant of their work), I was fully on-board with their mission. I’ve seen abuse. I know what it does to kids. I’ve seen kids have their lives ruined by abusive parents. I’ve seen some kids reclaim their lives, either as children or as adults. I’ve seen some people who struggle with reclaiming their lives every day of their lives. And I’ve seen some people who either don’t know reclamation is possible or have given up or continue to live in abusive situations their entire lives. I’ve seen it. I know. So, how could CPS be a bad thing?

For the same reason that autism advocacy is necessary at all. I was told: “No family should be burdened with three children with autism.” I was told: “The goal of therapy is to help your children become indistinguishable from their peers.” The person who said these words had tremendous influence with the local CPS agency, and when we didn’t comply with her “suggestions” to prioritize normalization or clinicalize our home, she called CPS—repeatedly. And they sided with her—completely. If they could, they would have removed the boys and put them in group homes for children with disabilities where they would live until they were normalized enough to be put into foster care. This was explained rather explicitly. Luckily, they couldn’t fabricate a case strong enough to make that happen.

But what if I burned-out? What if I became sufficiently disabled to qualify for an autism diagnosis? It would all start up again. The person in question would, if she became aware of it, begin harassing my family all over again. And I don’t think the autism advocacy movements have made enough progress for my family to survive the encounter.

So, I panicked.

Imminent Burn-Out? (Part 2—Rachel’s Experience)

  • Posted on November 16, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and I thought I knew what that meant. Then, I read Rachel's book The Uncharted Path.

As the full title, The Uncharted Path: My Journey with Late-Diagnosed Autism, implies, Rachel was not diagnosed as a child. Rachel lived for 50 years with no explanation for the ways she experienced life. Essentially, Rachel passed, or strived to pass, as neurotypical—for 50 years. She coped, she lived a successful life, she had relationships, she had a child, and she had a career—for 50 years.

Then, she started researching autism in regards to her father, and that sense of similitude that maybe it applied to her as well crept in. This search for answers culminated with an official diagnosis:

After a half-century of feeling invisible, unworthy, and utterly strange, I wanted someone else to see me, to hear me, to understand me, to take me seriously, and to not send me away until I got a label that made sense. (UP, page xiv)

Sure, she struggled. Sure, it was work. But she coped. Self-doubts (I am oh-so familiar with those) aside, she coped for fifty years!

I used to be able to do so much. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work full-time at a demanding job, teach my daughter, support my family, pay the bills, cook the meals, clean the house, plan birthday parties, include all the neighborhood children in our holiday celebrations, exercise, and do just about anything anyone asked me to do, except stand on my head. (UP, page 98)

And then, she burned-out. She stopped coping. She lost functioning.

Those times are over. I’m sad that they’re over, and I’m also very relieved. I’m finally learning that I am not an infinitely renewable resource. Walking through the world and taking care of myself is a lot of work. I have to use my energy wisely. As I experience the effects of a lifetime spent defying the way I was made, taking care of myself is the most vitally important work I can do. (UP, page 99)

Rachel describes the differences between what she used to do and what she could do as she wrote her book in vivid detail. I felt a familiar similitude to her experiences growing up and becoming an adult—working hard to be a success, but always being a bit different, standing out in a way that’s not conducive to social success. I felt a similitude to that woman who pushed herself so hard and did so much for others—career, family, friends. I understand, because I do it. I’m living that life right now. And I get tired. I run out of spoons.

And that’s where the fear comes in. Rachel’s words, “not an infinitely renewable resource,” were something of a blow—a terrible, fear-filled blow to my sense of reality.

What if we have a lifetime allotment of spoons? How many have I burned through? How many do I have left? Am I going to crash and burn?