Every morning as I open my eyes to greet the day I smile gently, as I have since early childhood. For a fleeting moment I am happy, full of the appreciative anticipation and excitement of another day. Then I move, an arm, a leg, perhaps just my fingers or neck; and the reality of the pain throughout my body hits me like a lightning bolt followed by a boulder.
Reality hits. Once again I realize that I will not be bounding out of bed to start my day, follow my dreams, work hard at the career that I used to be so passionate about. I will not get to drive to the office anticipating the projects of the day. I will not get to greet my coworkers and discuss the day ahead over coffee and chatter and jokes and laughter. I will not get to stretch my mind, solve the puzzles and challenges of the day, make mistakes or produce that which wows. I will not be driving home from a rewarding (or sometimes frustrating) day of work excited to throw off my work clothes in exchange for my jogging gear so I can run 3 miles and end up at the park on the swing set, before heading home to make dinner and collapse on the couch after a challenging and rewarding day of life! I will not feel the sense of completeness and belonging in the world at the end of the day. I will not be able to tell my friend or family member about the exciting project I am working on when they call to say hi. I will not get the hard earned paycheck at the end of the week that allows me not only to pay for my basic needs, but to plan for the future, plan for a vacation to an exotic place I would like to visit, plan for a good retirement one day. I will not be making plans for the weekend with my friends to go see the concert, or go out to the club or restaurant, because not only can I not afford to go on my overly extended tiny budget, but I can not keep up physically. I will no longer be making plans. I cannot dream of vacations or a comfortable retirement because I only have $5. dollars left at the end of every month after paying for the basics of life and the mounting medical bills. I cannot dream of the pretty dress in the window because I cannot afford to go anywhere anymore that allows me to wear that pretty dress. I no longer have the privilege of what most people take for granted. I no longer have the privilege of a “normal” life.
I wake up and gently smile at the new day. Then I move my arm, my leg, perhaps only my fingers or neck; and I once again (as happens every morning) I am reminded that I am Sisyphus, and the day demands that I once again I have to garner every ounce of physical and emotional strength to force myself out of bed, for the boulder awaits, and I have to push it up the mountain again if I am to get through another day. I have to push the boulder up the mountain with the full knowledge that tomorrow morning it will be waiting bedside, to be pushed up the mountain again. Every day is the same. I have become Sisyphus, life is the boulder. A boulder that is so heavy and painful that if I didn’t have pets waiting bedside with sweet, gentle eyes waiting to be fed by me, I would choose to ignore many days, I would simply roll over and cancel the day. But I cannot. My life is like an ever – repeating day … think the movie Ground Hog Day … an endless loop of maintenance of the basics of existence through the fog and frustration of relentless never-ending physical PAIN.
I have become Sisyphus. I am only 53 years old and I have been Sisyphus for 23 years now. I am so tired of being Sisyphus …
To those of you out there who think those of us who have life-long chronic diseases (that rob of our lives) somehow “choose” to live the life we are forced into by the limitations of our bodies (and everything that entails) … you need to re-examine the issue. Stop and ask yourself … would you give up everything you worked for and loved to live a tiny life on poverty level funds? I am sure your answer is no. By accusing me of choosing this life (with chronic pain) you are in essence saying that you think I am crazy and have somehow embraced my limited life style by choice? NO … I haven’t! I too had a life that I LOVED! I grieve for that life every day! I didn’t choose this disease … it chose me … it raped me … it took over my life in the most insidious fashion. I try to control it, I try to live with it, I put a smile on my face most days and try like hell to appear as normal as possible. I want to be seen as normal, I want nothing more than normal. I try every therapy, I research ad nauseum. I have tried every coping mechanism, medicine, alternative therapy, healing diet, etc., for 23 years. I exercise every day, I do everything I am supposed to do to control the disease. I work very hard to tame the beast. Buy please do not confuse my coping with with “choice”. I DID NOT CHOOSE THIS! I am just like you. The difference is that my body failed me at age 30. I was 30, so happy, moving forward full of big hopes, big dreams, big plans! The life I live today has nothing to do with any of those hopes, dreams, or plans. Just be grateful for your health, and grateful that you have not been handed “the boulder”. You have your freedom in your health … and I would give anything to have that back!