I recently read an article entitled, “No Fatties”: When Health Care Hurts by Carey Purcell which touched on the biases in care that fat people can face when seeking medical care. As I read the various stories of those whose pain had been ignored, sloughed off as the result of their weight, and sudden, unexplained weight gain being dismissed as nothing more than the result of eating to many burgers, I could not help but recall my own experiences with the medical community that have left me less than thrilled whenever it is time to visit the doctor.
The flurry of emotions raised by this article run strong and deep through my soul like a quiet river that with the slightest rain rises into a ragging torrent. Most days I quietly forget the pain, as I focus my mind upon the daily struggle to keep meaning and purpose in my life along with the battle that comes with living in chronic pain. But there are days that wound rises to the surface and the tears threaten to come rolling down. In order to silence the pin pricks of irritation at being treated as somewhat less than human, I have done the unthinkable in that I have to a great degree shut down the person I once was. I have allowed the battle to alter the course of my life and erase the dream I once cherished.
The change began with simple steps that were almost imperceptible. Little moves such as changing the channel whenever a medical clip or episode of a favorite show came to close to my own experience and threatened to touch a chord I would rather remained silent. Soon I was no longer watching once loved shows like Emergency, Mystery Diagnosis, Quincy ME, programs that had inspired me to hope that one day I might help the suffering and sick too, because to me they had become nothing more than idle tales. Ultimately it progressed to closing the books and shutting down my hopes and dreams of becoming a doctor or at a nurse practitioner.
Even though I had known for a long time that it was coming, the day it finally broke through my thick head that my dream was over, it felt as if my heart had been run over by a mile long bullet train running at full throttle. Tears filled my eyes as I looked down upon the pitiful remnants of the dream that been the driving force of my life since I was five, and finally admitted to myself that like Humpty Dumpty, all the glue in the world would not put it back together again.
I would like to say that when the truth finally knocked its way into my brain, that after a few hours of mourning, I rose from my bed of tears stronger, wiser, more resilient, and with a sweet calmness worthy of emulation. I would like to say that it was such, but sadly for days, weeks, even months I was touchy, moody, and at times only tolerable company as I grieved for the cavernous void in my heart that I had no clue how to ease.
With bitter sorrow I listened to every tidbit of the active world around me. The green eye of envy rising to the surface as I was barraged at every turn by fresh tidbits of my peers success until I dread to hear the phone ring lest it was some loved one sharing news with my Mother that they were certain would bring smiles of delight to our face. News that at other times might have only brought forth a dry smile and a momentary pang of longing that was easily smothered by the abiding hope that one day soon my Mother would triumphantly be able to declare that her daughter had finished premed or graduated from nursing school.
But now that the battle had been conceded, now that I had admitted that my life’s purpose had been defeated by the superior foe of chronic pain and misery, I was like a flimsy dot of a life raft lost at sea. Rising and falling on the storm maddened waves of uncertainty and loneliness and pounded by the beating rains of despair. Like a haunting melody the unforgiving wind declared that I was nothing but a useless blob, a worthless blood sucker sucking the life of my aging parents. With fiendish glee the flashing lightening and earth jarring thunder would announce that my future once so bright and hopeful was doomed to ignominy and failure.
During this bleak time my pain was made more acute as imaginary images of my frightful fate, terrorized my dreams and haunted the most peaceful moments of my days. Like the midnight sectors of Dickens strange Christmas tale, my eyes were tortured by the fearful realization that one day the comforting arms around me would be no more, and that I would be left pale, friendless, and jobless to face a future wandering the streets begging for the stale crumbs of human sympathy.
It seems like I have been meaning to sit down and write a post for months now. I wake up in the middle of the night with my head brimming with things that I long to say, but in the wee hours of the morning who wants to get out of bed? So I do the smart thing and dig deeper into the sheets hoping to fall back to sleep again. Comforting myself with the promise that I will get around to it first thing in the morning. But when morning lights dutifully rouses me from my bed, and I drag my achy bones over to the sofa and pull up my laptop to write, the fatigue and pain makes it so easy to push away my computer and curl up in a ball saying to myself, “A few minutes rest and I will feel more refreshed. After all, there is plenty of time before lunch.”
But of course that little rest soon turns into an hour or two and before I know what has happened it is time to reluctantly drag myself off of the sofa and help my parents make lunch or help with some other small chore around the house. But of course I am not disappointed because the nourishment that lunch has to offer is sure to brighten my thoughts and give my words more force.
But again, before I know what has happened I am awash in a wave of unwanted fatigue that leaves me to dull whited and sleepy to focus on the task at hand. My eyes feel like two heavy weights falling with great force to the earth, and seem to require superhuman effort to keep open. A little nap after a night of painful tossing and turning sings its siren song to my worn bones and before I knew what was happening, I was sound asleep.
On the days that I was able to wake up refreshed from my short spurt in dreamland, I have often tried to sit down at my laptop and write, but my attention was easily swayed by the enormous list of backlogged chores from the all to common days when migraines, fatigue, nausea, and a sea of other miseries that accompanies autoimmune disorders had won the battle for my attention. And it was so easy to say, “It’s still early, there is plenty to time before bed.” Or so it always seemed, because like a slippery lion hunting its prey, bedtime seemed to leap out of the bushes at the most unexpected moment leaving me to declare, “Oh well, tomorrow is another day.”
Before I knew it, one tomorrow had turned into two, then three, four, five, ten, twenty, until I had lost count of how many times I had given into procrastination enchanting song of, don’t worry, if you don’t feel like doing it right now because waiting a few minutes will allow you more time to think about what you plan to say, or don’t worry if you don’t feel well enough to do it right now because you will feel better tomorrow and will be able to do a much better job.
What I find so amazing about it as I sit down to write this post, is that at first I felt bad, about putting off the task, but as I listened to procrastination’s sweet lullaby, I began to rejoice in the relief that there was some better time, some wiser moment to do what I really wanted to do today. I began not think of reasons to do, but reasons to wait for that better season that never quite seemed to materialize but was always around the corner.
Granted, there were some good reasons why I was putting things off. For the past few weeks I have been rather ill. My stomach has been so unsettled that the doctor ordered medicine to help ensure that its contents stayed in its proper place. And some of those mornings and afternoons I spent on the sofa were spent curled up in near tears for the pain I was in. Yet sadly I know that there were some days when it might have taken some effort but with the help of a few pillows to raise me up I could have pulled up my laptop and wrote a few lines, taken a break, and then wrote a little more.
Unfortunately procrastination is a funny master. At first there good reason to delay, such as taking a moment to synthesize ones thought until it crystallized into a more clear and concise form, or to wait until my migraine medicine has worked enough to allow my eyes to endure the glare of the screen. But while it might start with good reason, if this dreadful monster is given too much exercise it quickly morphs into a monster most dreadful. One that if were are not careful has the power to conquer us and forever alter the course of our lives.
Whenever I hear this hymn I am transported back to my childhood. It is Friday evening, the sun is setting, and I am sitting on my Grandparents sofa. My Great-grandmother is sitting on the lazy boy rocker. Her hair is white as snow and her memory is in the first stages of fading away. My Grandmother is sitting to her right on a wooden rocker and my Grandfather is on the sofa nearest to the light.
With hymn books in hand we have gathered in the small living room to join together in worship to welcome the Sabbath. The fact that my Father, sister, and I barely know a word of Spanish does not matter, because unlike my Great-Grandmother and Grandfather, my Grandmother can only speak a little bit of English.
Our ability to communicate with her without the aid of my Mother or Grandfather to translate is limited. Making it impossible to sit down and freely speak with her as we would like. But for that one moment, as we sat down for worship and lifted our voices in song the communication gap was gone.
It is true that we did not understand all words, but that did not matter because we knew that it was hymn of praise to God. And oh what a glorious moment as we lifted our voices. For that brief moment the language barrier seemed to fade as our voice united in praise to God and by faith our hearts were carried to that glorious day when Jesus would return and at last we would be free to sit and talk. The language barrier would be no more, and the words that we had spent a lifetime longing to share would at last be able to freely flow.
As I listen to the words of Cantad algres al Senor, my heart beats with delight as I remember those precious few evenings. With cloudy eyes I think back to the joy that filled my heart and how I miss those Friday nights. For sadly those evenings are no more as both my Great-Grandmother and my Grandfather now lay quietly in the tomb waiting for that longed for day when Jesus shall call them forth to take part in that glorious family reunion wherwe shall once again lift up our voices to sing praises to our King.
When I was in high school, one of my favorite weekend activities was to play Monopoly with my Mother. If it were not for homework and household chores my Mother and I would have played the game all day. We loved going round after round, hoping and waiting for all the properties to brought up so we could make our exchanges and build our hotels.
As I look back on those enjoyable mother/daughter afternoons, I remember that despite nearly always loosing the game, I would have such fun. But there was always a low spot (not counting my nearly perfect record of landing on Park Place or Board Walk after it was brought), that made my heart tremble. And that was landing on the community property space. There were so many dangerous cards to chose from such as pay poor tax, pay school tax, or the dreaded hotel and homes tax.
But one bright spot to the day was the unexpected joy of lifting up the card and discovering that I had chosen the get out of jail free card. That wonderful card which would allow me to get of one jam without having to pay a penalty and having to fork out 50 dollars that I did not have.
As I think about it now, I imagine that to some people it must appear like I or any other chronically ill person has managed to land on community property and by the luck of the draw pull out this special card. This wonderful card that allows us at any moment to get out of work, chores, and any other unpleasant life duty. To many it may seem like if something is too boring, to demanding, to exhausting, dirty, disgusting, stressing, etc we get to pull this little ace from out of sleeves and declare that we are now privileged to get out of work and got and do the things that we really want to do.
The past few weeks have not been my best. I have been caught in the throws of a miserable flair up that has left me feeling cold, tired, and painful. To add to the misery my digestive system has been under constant attack so that some days my appetite drops to nearly nothing while my weight has increased.
Fortunately even in some of the most miserable times, if you look hard enough, you can find something to be grateful for. For me that has been the constant support of my family and my sweet little pup Happy who I sometimes get the unnerving feeling actually likes my sick days because when I am sick I end up camping out on the sofa where he can spend the day curled up on my lap.
Something else which has brought a smile to my worn face is the beauty of several hibiscus plants which have spent the last several weeks in bloom. Greeting me with their gorgeous blooms as I take my short backyard stroll. They have been a source of comfort and joy reminding me that even though there are moments that I tempted to think that life is nothing more than pain and misery, there is a great deal worth smiling about if only we open our eyes and take a good look at the simple wonders all around us.
For many the question of what one’s legacy will be seems odd, even uncomfortable. For some the idea of a legacy is something to be bothered with only by the rich or the very old. Maybe it was being sick and spending days bedridden on the sofa, or the thought that one day soon my life’s record would be brought be for God, but for me I could not help but wonder what type of legacy I was leaving. I often found myself asking if this were my last day, how would I be remembered? If something were to happen and my life were to flash before my eyes, would I blush with shame or smile with joy?
As I pondered the answers to those questions, I realized that as discomforting as it is, there is reason for us to ask this question while we have time to consider the answer and make a change. Because it would be a sad thing to wait until most of our golden opportunities to do good, our best chance to bring joy to the hearts of those we love have slipped away, to reflect upon our actions and realize that it is a record of neglect and wasted days. That by our actions big and small, by our neglect of little cares and duties, we have created a past full of broken relationships, hurt words, and missed opportunities.
As I sat in my curled up ball of pain, I could not help but wonder how sad it would be to reach my last day and look back upon my life and realize that the world was no better off for my existence. And that neither friend nor family would feel the need to shed a tear by my grave, but would instead feel a sense of relief that I was gone. That was not the kind of life record that I wanted to meet.
The more I pondered this troubling question, the more I realized that taking some time here and there to reflect upon the course of our life is necessary. It is good to take a few minutes here and there to consider the vast quantity of words that spill so easily from our racing tongues to see if they are of a nature that uplifts those around us, or the type that rips apart the tender hearts of those we love.
That it is important to routinely look at the road of life to determine if it is the right road. Or else how will I know if I am traveling a path that will make me as useful as I can be or one that is tending to a cold selfishness that has no concern for anything but self-gratification?
It is from these thoughts and questions, as I asked myself where was I going, what type of character was I building, that this simple poem was inspired. I hope that you not only enjoy this humble poem, but that it is inspires you to take a few minutes to examine your life to determine if you are creating the legacy of life that will bring a smile to your face or one that will cause you to shed tears of sorrow.
It is a shame that we need a special day to pause from our busy schedules to remember the people that we love. Important days like Valentines, Mother’s, Father’s, and Grandparent’s Day should not have to be on the calendar for us to stop and schedule a few hours at the dinner table with or call on the phone.
The mere years of love and faithful devotion required by our Mother’s for us to survive the tenuous journey of totally dependent infancy to independent adults ready to stand upon our own two feet should be enough for us to daily show our gratitude through little acts of attention and words of love that let our precious Mother know that we are grateful for her years of sacrifice on our behalf.
But sadly it is so easy to get caught up in the minutia of life and the daily grind to survive. The once daily calls we promised that we would make grow sparse as work and exhaustion blend one day into another. Before we realize it, days and weeks have gone by since we last said those words our Mother’s hold so dear, I love you Mom, thank you for all that you have done.
Far in the Distance is a poem that sprung from the many days of pain that I spent looking out my window dreaming of what it would be like to be healthy and free to wander the world. To have the energy required to travel down the numerous little side roads that begged me to pull over and explore them as I looked out my backseat window watching the world scurry about.
As I road past or looked out my window I would imagine what it would be like to live in that little home, to sit under the covering boughs of that particular tree with my textbook, or browse through the isles of that little shop tucked in the corner. From there my thoughts would take flight to other corners of earth that would always remain a mystery. I would imagine what fun it would be to hop on a train or plane and visit corners of the earth far and wide. To see new places, meet new people, and learn first hand about cultures that I have only seen on TV or read about in books.
It is from this longing for adventure that this simple poem sprung. I hope that you enjoy it.