When I first conceived of the Token Theory in 2010, it was because I felt like I was giving too much of myself simply for self-care. I found tasks such as getting dressed, taking a walk, going for a ride, all overwhelming. I have spent the last 15 years battling the fact that life takes an aggressive toll on me physically. It came to me that an inescapable fact of my life is that I do pay for everything in one way or another. The idea that I have tokens to spend gives me a tangible way to quantify those costs. I spend my tokens until they run out...then I pay with more pain. The core truth is that everything costs me something. I do not think this is fair. I do not think this is reasonable, but it just happens to be how I view my life at this point. When and how I use my tokens is a deliberate choice. There is a gift in seeing life in this light. My condition, Ehler’s Danlos Syndrome, has taught me to have awareness about how I choose to script my days. I am constantly trying to use my tokens in a way that is both meaningful and satisfying to me. After all, I never know when my supply of tokens may be exhausted, so I feel compelled to make every moment count.
Wrapped in a favorite, but badly worn silk robe, I seated myself on a small teak bench in my bathroom. I used my thumb to turn on the blow-dryer with one hand while using a small -bristled brush in my right. I thought, “Let the dance of the blow-dryer begin.” Some time ago,Iwould stand to blow dry my hair. I liked to watch my reflection in the mirror over the sink, but the time came that I was too tired to stand that long. I did what we humans do, I adapted. It took some creative maneuvers to figure out how to dry my hair without lifting my right arm above shoulder height. Because that shoulder is damaged and dislocates easily, my shoulder quickly corrects me if I forget to maintain my position. I learned to blow dry my hair from underneath or upside down. I have come to think of blow-drying as an Olympic event. I started to learn attractive ways to fashion my hair that do not require dry hair. Hurdle cleared. Next, makeup. I smoothed on lotion with SPF30, drew a few lines, puffed a brush or two, followed by a stroke of lip gloss and TADA , beauty incarnate.....sort of. It can be all I can do to get on with the bra and panties. Once properly girded, I pull my robe back over my very thin frame. I make the bed, gather up towels and laundry, start a load of wash, and empty the dishwasher. With an eye on the clock, I eased myself back onto the bed, exhausted. I thought, “ Why does it cost me so much just to get ready? “ As I lay there, I played with that idea. What if I started the day with a bucket of tokens. Every action or task completed would costs one or more tokens. I began assigning values to the chores and activities of everyday life a few years ago. My token list is mine, and mine alone. What might be an easy-breezy one token for me, might cost someone else three. The point, the very nugget of this idea is that I had to learn to mange my tokens better. I was not distributing them in a way that was best for me. I calculated what it costs me each day to make it to bedtime. The quantity of tokens I have each day is determined my how well I slept, whether I have taken good care of myself the day before, how I have managed stress in my life. I recognized that these were my tokens and it was up to me what I wanted to do with them. My mind is lithe, nimble and ready-to-leap-tall-buildings in-a-single-bound. My body, however, it is an expensive proposition. There is a premium to pay for me to move forward with anything in the physical realm,. There are people in my life who do not understand this, or they outright reject the notion that I am impeded in my aspirations. The underlying text is that I am lazy or not giving it my all. Someone who is not hindered by physical limitations can not appreciate what it is like to desperately want to resume a normal life Ihave repeatedly, clearly to the detriment of my health, tried to ignore the tolls to be paid for weeding, taking a ride, going for a walk, hanging a painting. Even typing hurts my fingers. There was a time that I was fully convinced that I could cheat --”To hell with the tokens, I will do what I want to.” With this kind of mind-over-matter headset, I believed I could anything. Regrettably, this approach didn’t work out too well for me. With a reliability as certain as the sun coming up, I pay for trying to beat the system. Inevitably, I am injured or set back in a significant way.. (Why can’t I cut down this tree myself? Why shouldn’t I take a three hourbus ride?)
Somehow, mentally assigning values to the daily activities of life, gives me a framework that helps me. In some ways, I realized, it is kind of like a Weight Watcher’s plan. The idea that there is a cost — in tokens — to everything I do and that I choose how to spend my tokens, gave me more of a sense of control over my life.
I am not the only one! I read an essay by Christine Misrandinocalled “The Spoon Theory.” When Christine’s best friend asked Christine to tell her really, truly, what it was like to live with a chronic, debilitating illness (Lupus), Christine cast about for the words to describe it. She and her friend were seated in a diner where they often shared stories and meals and life (as do Gerry and Elaine in Seinfield or Carried and Miranda in Sex in the City). On this occasion, Christine’s friend was particularly concerned about her. She approached Christine with frank and open curiosity. Christine did not see a hint of judgementor impatience in her friend’s face. When she realized that her friend sincerely wanted to understand what her life was like, Christine tried to collect her thoughts. She suddenly struck on a way to explain her life to her friend in a concrete and vivid manner. Spoons.
Christine gathered up all the spoons she could find from her table and the tables surrounding her. Christine handed over this bouquet of spoons to her friend and said, “Here, you have Lupus.” Next, Christine took the time to explain to her friend that one of the biggest differences between being sick and being healthy is that when you are healthy, you do not pause to consider the consequences of every single choice you make. she asked her friend to list off the tasks of her day, including all the “basics.” Her friend started with “getting ready for work.” Rightaway, Christine chastised her.”’No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.’” Then Christine took away a spoon.
As I read Christine’s account, I recognized my own token version intersecting with her spoons analogy. Getting out of bed will cost a spoon. Showering costs a spoon (two if shampooing and blow-drying hair). Dressing, another spoon. For me, I add emptying the dishwasher, walking the dog, starting a load of laundry, token, token, token. On a good day, I may start with twenty tokens. On a bad day, I may find my bucket contains only twelve. Life and my attitude dictate what I start with.My disability determines what things cost.
Sometimes, I borrow against tomorrow’s tokens but there is a high price to pay for that luxury. And what lies just off-stage is the looming threat that a respiratory infection or a fall or some untoward event will knock my knees out from under me and my bucket will sit upside down, empty, for weeks. A full bucket of tokens is a profound luxury that goes unappreciated until it is gone. Most people start their days with seemingly infinite stamina and possibilities. They make their plans without careful consideration of the ramifications that their activities will have on their well-being. budget. I do not waste my time being jealous of them. I only wish they could fully appreciate what an amazing gift that is to not be counting tokens. As an individual with a disability, I am no different than anyone else. Father Time ticks for me at the same rate for me as for anyone else. The difference is, my health compels me to constantly, consciously, choose how to spend my tokens. People like Christine with her spoons and me with my tokens keep one eye on the running clock as it races through the minutes and the hours consuming our tokens and spoons. We battle the moment that inevitably arrives in which we find our s are depleted.
In her essay, Christine talked about how challenging it is to slow down and to make choices about what is most vital. She wanted her friend to understand her sense of frustration that she can’t do the hundreds of little things that come easily to most people. Instead, she must constantly weigh how she wants to spend her spoons.
When I first conceived of the Token Theory, it was because I felt like I was giving too much of myself simply to get dressed, to take a walk, to go for a ride. Everything takes a toll on my physically. It came to me that an inescapable fact of my life is that I do pay for everything I do in one way or another. I may pay with tokens, I may pay with pain, but everything costs me something. I do not think this is fair. I do not think this is reasonable, but it just happens to be how my life is at this point. When I use my tokens, or Christine spends her spoons, it is, most often, a deliberate choice. And for that gift I am grateful. I am constantly living with an awareness that I am choosing how to script my day. I am dedicated to using my tokens in a way that is both meaningful and satisfying to me. The idea that I have tokens to pay my way forwardhas given me a tangible way to quantify those costs. I spend my tokens until they run out...then I pay with more pain. The core truth is that everything costs me something. I never know when my supply of tokens may be exhausted. All I can do is to make every token count and every moment matter.
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