21 November, 2014

Reflection on Thanksgiving

                                                                        dee winter 2013

A Thanksgiving Hymn: Pray to God

In times of doubt,
In times of joy,
In times of darkness,                           Pray to God
In times of hope,
In times of loss,
In times of understanding,
In times of despair,                               Pray to God
In times of love,   
In times of anger,
In times of jubilation,
In times of regret,                                  Pray to God
In times of insight,                                   
In times of fatigue,
In times of certainty,
In times of anger,
In times of thanksgiving,                        Pray to God           

As the moon rises,
As the moon sets,
As the sun rises,
As the sun sets,                                        Pray to God


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/ 

06 December, 2012

No Regrets Living

In her article, Regrets of the Dying, Bronnie Ware, a palliative nurse, reported asking her patients their regrets as they faced their last days.  She cited the five regrets that were most commonly expressed. 

1.  I wish I’d had the courage to live a life true to myself, not the life others expected of me 
2.  I wish I didn’t work so hard. (Every terminal male patient she had nursed expressed this view.) 
3. I wish I’d had the courage to express my feelings.
4.  I wish I had stayed in touch with my friends.  
5.  I wish that I had let myself be happier.
This article struck a particular chord with me.  When I was seventeen, I started to work with the Visiting Nurse’s of Martha’s Vineyard.  They had a new program they were starting and offered me the opportunity to work with them as a nurse’s aid; it was called Hospice of Martha’s Vineyard.  We had weekly sessions to discuss Death and Dying. We read Elizabeth Kubler Ross, author of On Death and Dying. What was most important was that the small group of us were part of a new focus dedicated to caring for the patients and families of those who had been identified as having terminal illnesses.  If life has chapters, that chapter of my life was one of the most formative.  I spent the summer of 1976 through the Spring of 1980 working with dying people.  The first three months were the hardest.  I had five patients.  I lost five patients.  I was the one who stayed by their beds when things got messy, when they were scared, when no one else would feed them or listen to their fears.  I was willing to ask, “Are you afraid?”  “Is there anything I can do to make you more comfortable?” Sometimes, patients answered with mechanical adjustments like plumping a pillow, bringing a book, baking a cake. However, when they were feeling low or angry, I found that they simply wanted me to be there.  I worried about being paid to sit, but one of my early patients, Nettie Allen, told me that she was paying me and I would do what she wanted me to do.  Some days, I canned fruit or weeded her garden under her direction. Some days, I sat next to her on a bench and we listened to bird calls.  Her feisty spirit waned, but her lessons did not. I learned a lot about dying over those years. I observed that people die as differently as they live.  Some fight hard, but go quietly, others seem to have given up, yet linger.  Some people talk about the past and their mistakes, others focus of leaving things in order for their families. There is an intimacy borne of death. The questions that may have gone unspoken without the impending sense of leave-taking may be asked openly.  The one I asked every patient was, “Would you have done anything differently?”  It was that question that prompted me to label the kind of life I hoped to lead as No Regrets Living.  The biggest takeaway that those years working for hospice -- first on Martha’s Vineyard, then later, in western Massachusetts -- gave me was a belief that each of us should strive to live in a way that we do not harbor regrets. I asked myself, “What if we lived life large?  Took a risk to do exactly what we wanted to do with our lives?” I wondered if regrets could be nothing more than an acknowledgement of our mistakes.  Are they an inevitable result of life?  After all, part of life is failing. The more important part is getting up again. Did my patients have regrets because they were misinformed, too afraid to choose the path they desired or because they simply did not get back up when they failed?  No matter how regrets are defined, these patients were unanimous in their message to try to live as close as I could to a No-Regrets Life.  This imperative has been a compass rose for me.  Faced with life’s hardest decisions, I still pause to ask myself, “What would I do if I knew tomorrow was my last day? Would I regret this choice?” This strategy has stood the test of time.
Bronnie Ware did a commendable job summarizing the five regrets most often expressed by people who were dying.  If only we could heed the message contained there in, we might be better equipped to live a No-Regrets Life.  For now, maybe I will just print the five regrets on card stock and hand them out to everyone I meet. If one person, just one, changes the direction of his or her life because of the sage advice of moribund patients, the strategy would be worthwhile. We will all have earned a spot on the stage to sing alongside Frank Sinatra...  “Regrets? I’ve had a few, but then again, too few to mention.”
Bonnie Ware’s essay may be found at  http://www.inspirationandchai.com/Regrets-of-the-Dying.html

18 July, 2012

On the Island

dee~ July 2012
On the Island
On the Island,
Water holds history
haunting lore of pasts
hopeful tales of tomorrows,
--Please, excuse me, make way,
c o m i n g  t h r o u g h
with urgent scents, sounds and sights of 
Soak in the sun, drink in the rain, breathe in the beauty.
The Island is for all of us,
is all for us.

12 July, 2012

Chestnut Mountain Viewed

written 10/2010
Years ago, the cover of a newsstand magazine caught my attention.  Headlined in the August edition was the 1996 Better Homes and Gardens Home of the Year.  Ever since then, I have kept that magazine preserved in a manila envelope covered with large bold words in red ink; SAVE, SAVE, SAVE.  The plans in that magazine changed my life.
Back in August, 1996, my husband, three children, two cats and one bird were pushing out the boundaries of our 2200sq. foot restored farmhouse.  We were at a cross-road; we needed to expand our living quarters, build or purchase a new home.  The plans in Better Homes and Gardens captivated our attention and claimed out hearts.  I mailed a check for the architectural plans and we allowed our dreams to blossom.  We searched six months for an appropriate lot that would meet our budget and construction requirements.  Our efforts were not fruitful.  Reluctantly, we shelved our desire to build the 1996 Better Homes and Gardens Home of the Year.  We put our one hundred year old home on stilts, dug a full basement, constructed a solid foundation and added a family room and a library.  We loved the property we rebuilt.  We had a comfortable home, an in-ground pool and over an acre of land for privacy. And yet…
From a box, under our bed, in an envelope labeled SAVE, SAVE, SAVE, our future whispered to us.  By tacit, unspoken agreement, we kept a six-year vigil for the hillside property that might accommodate our house.  My husband stumbled upon it in a casual conversation with an insurance client.  The property on Chestnut Mountain had proven difficult to develop and the client wanted to sell it.  
Together, my husband and I hiked up the remnants of a logging road that disappeared into an overgrown tangle of thicket.  After climbing 400 feet up Chestnut Mountain, we took to trails left by deer and other fauna of western Massachusetts.  My husband gained purchase of the view by shimmying up a tree.  I climbed on until I reached a rock-roped ridge with a stream of water trickling down it.  My heart beat loud and fast, whether from exhilaration or exertion, I was not concerned.  I had a strong, sure sense of coming home.  Unfolding below us was the wide, expansive vista of the rolling hills and mountains that lend the geographic identity to this region.  The Connecticut River Valley coursed through it, threading its way south toward Springfield, toward the sea.  
The land transaction was readily accomplished.  What followed was anything but easy.  We endured a two-year legal wrangle with the local Zoning Board who were invested in flexing their muscles on our project.  Less committed dreamers may have abandoned their dreams, but we had a secret inspiration.  We had a magazine with a full photo-shoot of our dream house as it would rise from the end of a 1200 -foot long mountainous driveway.   
We moved into Chestnut Mountain View in December, 2005.  Today, numerous projects are still underway, including:  landscaping, constructing the wrap-around deck, finishing the first floor space.  Time, energy and resources have been at a premium.  These factors in no way diminish our deep sense of gratitude that we live on ten acres in a home that can only be described as a hallowed place: we live perched between earth and sky in a spacious and light-filled home once featured in Better Homes and Gardens.

Letting Go

from October, 2011
I stood in a ten by eleven foot room this afternoon wailing.  I hadn’t seen it coming.  These sobs from deep in my belly rolled up and out.  My nose ran and my eyes rained tears.  Loss seemed to have multiplied in black body bags.  I was surrounded by five contractor size garbage bags of my father’s life.  For three hours, I pulled items from his closet, from his desk from one of his four brief cases, from his bookcase, from his stereo cabinet and from boxes stored under his desk.  I salvaged more than I intended.  Four boxes of records dating back to the late 1800’s.  A suit, a shirt, two ties, for the day he might require them.  A collection of tape recordings made over the past 25 years.  Several touching notes and letters written to my sister and me for such day that I was doing such a heart-breaking task.  My father’s relocation to the Holyoke Soldier’s Home will provide him a new start on life.  He left behind the detritus for my sister and I to sort out.  The visceral pain of touching the pieces of his life that he treasured most were what was most difficult.  My great-grandmother’s sepia photograph wrapped in a velvet sack laid alongside money from the mid to late 1800’s. It was hard to ponder what brought these items together.  The batteries and pens and stationery and the stamps on letters never mailed were inventoried and sorted.  
My brother-in-law and I had spent hours and hours over the weekend right here in the exact same spot.  We had removed close to a ton of clutter and cast aways from the house already.  I tried to steel l myself to it.  I tried to apply my very exceptional skill to sort and organize like and unlike items (learned from playing hundreds of games of solitude, I am convinced) without the emotional burden of being present  - while I toss an entire refrigerator filled with half-eaten food.  It is not easy.  Loss always seems to declare itself as I finger a book, turn over a photograph, gather up items for the Thrift Shop.  Letting go, no matter who, no matter how, no matter when, is simply never easy.