04 July, 2013


Hold fast, Holy Time,
who determines all things,
Halt the mighty river of life’s
triumphs and stings.
Grant us a moment, a respite, a pause
Give us reprieve from the pain and the loss.
Pierce us with gladness
O Holy Time,
We are nothing without thee, 
We're forever thine.

dee    7.4.13

02 April, 2013


The revision:                                       A PRICE TO PAY

When I first conceived of the Token Theory, it was because I felt like I was giving too much of myself simply to perform the tasks of daily living; it could be a challenge to get dressed for an evening out or to take a morning walk or to go for a Sunday morning drive with my husband. I found myself done in by the simplest things. Everything felt like it took a toll on me physically; an inescapable fact of my life seemed to be that there was a significant cost to whatever I did. I imagined what it would be like to use money to buy the freedom to do what I chose. That idea morphed into the thought that I should have a stash of tokens to pay my way forward. The notion of having a tangible way to quantify the costs of participating in life made sense to me. During some long, sleepless, nights I refined the concept. In a surprising way, it gave me more of a sense of control over a process I could not directly manage myself.
Some of us have chronic health issues that tax our accumulated wealth of physical energy supplies.  We tap into our stores in order to function.  Eventually, our reserves run low. At that point, those of us who are physically compromised in some way, become acutely aware that we need to budget our remaining energy and conserve our resources. The breakthrough came when I started to think in concrete terms.  It seemed sensible to assign tokens as a way to quantify the cost of functioning when dealing with physical challenges. I pictured an energy bank where I keep my tokens. Sleep, rest, exercise, a healthy diet and stress-coping techniques are all methods I can use to earn new tokens to spend on activities of daily living. I can spend them (be active) or save them (rest). Typically, I keep a supply of tokens on hand.  I usually spend my tokens until they run out. At times, I may even run a negative balance of tokens.  

  In my fantasy world, I can use some of my savings or borrow from the next day's allowance.  If I exhaust those resources, I pay for what I do with an increase in pain. I discovered a core truth; Everything costs something. This is true for us alI. It  just happens to be a whole lot more apparent for me. To tell the truth, I do not think this is fair, nor do I think this is reasonable. But it happens to be a condition of my life at this time. It is. When I use my tokens, it is an act of deliberate choice. I have come to think of this mindful awareness of each moment as an unexpected gift of living with a disability. 
    I have had to learn how to maintain a deliberate awareness of how I script each day. I strive to  use my tokens in a way that is both meaningful and satisfying to me. The Token Theory is a powerful way to set intention and keep me present in the moment. With the high price I pay for each thing I do, I feel compelled to make every moment count.

Wrapped in a favorite, but badly worn silk robe, I recently 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, I would stand to blow dry my hair. I liked to watch my reflection in the mirror over the sink, but eventually, I would grow too tired to stand for the fifteen minutes it took to dry my hair. I did what we humans do, I adapted. Being seated helped the fatigue, but my shoulder became problematic -- it often dislocates if I lift it higher than perpendicular to the floor. It took some creative maneuvers to figure out how to dry my hair without lifting my right arm, but I prevailed. Using a new, seated-blow-drying technique, I learned to dry my hair from underneath or upside down. I have come to think of blow-drying as an Olympic Sport. Then, the unexpected happened.  I could no longer hold the blow-drier in my left hand; it was too heavy and I could't push the buttons.  We humans survive because we acclimate to change. Now,  I allow my hair to air-dry. Only for special occasions do I engage in the blow-drier-hustle.  Continuing with my morning routine, my makeup is next. I smooth on lotion with SPF30, draw a few lines, puff a brush or two, follow with a stroke of lip gloss and TADAH , beauty incarnate.....sort of. On difficult days, it is all I can do to get dressed in bra and panties. My heart starts racing, my hands begin shaking and I am too dizzy to walk.  This is called POTS or Positional Orthostatic Tachycardia Syndrome. Basically, one's heart rate increases with changes in position. I lived with it for a good forty years before I knew there was a name for it!  Turning away from the mirror, I pulled my robe more tightly over my long, thin frame. I made the bed, gathered up towels and laundry, started a load of wash, emptied the dishwasher, then, with an eye on the clock, eased myself back onto the bed. My hands, wrists, right shoulder, hips, spine, knees, ankles throbbed. I was exhausted. I thought, “ Why does it cost me so much just to get going in the day? “ As I lay there, I played with that idea.   This was the moment of inception of the Token Theory.  What if I started the day with a bucket of tokens. Every action or task completed would cost one or more tokens. I began assigning values to the chores and activities of everyday life. 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 was 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 cost me each day to make it to bedtime. The quantity of tokens I have each day is determined by how well I sleep, 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. In my mind, I am lithe, nimble and ready-to-leap-tall-buildings in-a-single-bound. My body, however,  rebels. Over and over,  I am disappointed. 
I have repeatedly, clearly to the detriment of my health, tried to ignore the tolls I incur when I determinedly set out to do the things I enjoy: weeding, taking an extended ride, going for a mile walk, hanging a painting, typing without a break.  There was a time that I was fully convinced that I could cheat --
"To hell with the consequences, I will do what I want to." 
Well, this kind of mind-over-matter-I-believe-I-can-do-it mentality didn’t work out so well for me.  I make the critical mistake of believing that I can forge through, practice mind over matter, institute a no pain, no gain attitude. With a reliability as certain as each new sunrise, when I employ these strategies, I pay dearly 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-hour bus ride?)  I have the Emergency Room discharge papers to prove this. There are people who do not understand these parameters because they do not have to observe such limitations themselves.  They want to reject the notion that I am actually impeded in my aspirations. They comment that I look so "normal." The underlying text is that I am lazy or not giving it my all. Someone who is not hindered by physical limitations cannot appreciate what it is like to desperately want to resume what was once a "normal" life.  Out the door for a quick 5K before breakfast, then a mad rush to get my three kids off to school.  At that juncture in my life, I could no more have imagined that I would have to pause to calculate what slip-on shoes I could manage to get on my feet than my friends can understand how my token theory reigns my life today. 

The bottom line? There is a premium I must pay in order to move forward with anything in the physical realm. It is exactly for that reason that I have turned so much of my attention to the emotional, psychological and spiritual realms for fulfillment. I have learned to work hard to read, to write and to travel world wide on the web.
 Mentally assigning values to the daily activities of life has given me a framework that helps manage my days. The idea that there is a cost --in tokens-- to everything I do and that I choose how to spend my tokens has given me more of a sense of control over my life.
Sometimes, I borrow against tomorrow’s tokens but there is a high price to pay for that luxury. 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 for weeks.
A full bucket of tokens is a profound luxury that goes unappreciated until it is gone. Most people my age 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 it is to be free from counting tokens. Father Time ticks for the disabled at the same rate as for everyone else. The difference is, our health leads us to constantly, consciously, choose how we want to spend our reserves. We keep one eye on the running clock as it races through the minutes and the hours,

I am not the only one! I read an essay by Christine Misrandino called “The Spoon Theory.”1. When Christine’s best friend asked Christine to tell her really, truly, what it was like to live with a chronic, debilitating illness, Christine read the sincerity in her friend's face as she 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 in Seinfield or Sex in the City). page3image1000
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, hold this, you have Lupus.” Christine explained 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. Christine asked her friend to list off the tasks of her day, including all the “basics.” Her friend started with “getting ready for work.” Right away, 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 not be able to function. " Having said that, Christine took away a spoon.
As I read Christine’s account, I compared our versions of our Pay As You Go Lives.  What struck me most was that basically, we agreed. In essence,  our attitude and self-care dictates what we start with in the bank, our disability determines what things cost. As individuals, we have to choose how we want to spend our tokens.
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. With a pithy courage I could admire and to which I aspire, Christine disclosed one of her secrets, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.” Unsaid, but understood, is that the good stuff that life tosses our way might be just around the corner. And it pays to be prepared!  Whatever the cost.

I had a brainstorm. I thought it might be worthwhile to pull some of my favorite posts from my blog, A New Dawn, and polish them up. Perhaps, in my late night yearnings, I posit, a small bound book of them? It can be embarrassing to open the door to my literary past-life.  I confess; my work is flawed. It is uncomfortable to look back at my earlier work and see mistakes. True, in my diligent drive to produce an essay per day for 365 days, some of the finer points were lost. What a relief that  punctuation, grammar,  and facts, for the most part, were correct. However, in hindsight, it is ever too easy to find mistakes.  Of course, I am the kind of person who enjoys finding mistakes. There is a small clan of people who share my editorial leanings.  We are the ones who will while away wasted minutes spent waiting by editing restaurant menus and telephone books. Having embarked on this particular journey, I must set ego aside and bravely, pick up a red pen and edit.  One of the first essays I want to revisit appeared in A New Dawn  on March 8, 2012. Even as I wrote The Spoon Theory meets The Token Theory, I sensed that I would want to return to it for an intimate session of revision and editing.

The original:

*http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon- theory-written-by-christine-miserandino/