My experience is not your expectation

I've been saving this quoatation in an email since June 21st and forwarding it to myself month after month (AOL takes mail that is more than 30 days old).  The quote is: "My experience is not your expectation."  Regretfully, I don't remember where I saw it.

                              My experience is not your expectation....

            My life drastically changed in 1999.  After almost 20 years of "walking-wounded" type pain, my body finally gave in (gave up) and the past 7 years has been practically unbearable with 24 hr. severe pain.  My mobility changed; my life changed.

           But, my family has not understood the changes I've gone through, nor the situation I now find myself in every day.  They expect my life to be the same.  But, it is not the same, and probably will never be the same ever again. 

          Yet, my sisters still expect me to be normal, and to have normal activities as they do in their lives.  They don't want to hear that I'm in pain; they don't want to hear one word about (ewww) illness.  They have not been chronically ill.  They expect me to recover as one would after a bad cold or flu.  But, chronic pain is not like that; recovery, if any occurs, might happen after surgical intervention, or, maybe never.  Never is a word they don't want to hear.

          No, if I try to come to terms with my situation and begin accepting what has happened TO me, my sisters say I am not being "positive enough."  They fully believe positive thinking is enough to make my pain just disappear.  They ignore the fact that medical interventions (physical therapy, ultrasound, etc.) has failed to correct the problem and that if surgery is not recommended (or indicated) that the way I am now will be the way I will be.  No amount of positive thinking will totally heal my body or make damaged nerves suddenly functional again.

         For 7 years I have tried to beas productive as I can be from the confines of bed or chair, mostly bed.  Somedays, I make tremendous progress towards goals I have set for different projects, but other days, progress is very little.  My family doesn't understand that how I wake up is never predictable.  A "good day" is never guaranteed.  For me, a "positive" in my day may be that I completed 2 pages of writing a book.  Just 2 little pages.  No, it doesn't compare to my former life of bread-winner, mother, errand-runner, going back to college for a 2nd degree.  But those days are gone.  Now a "positive" may be that I had one or two "good hours" before pain overruled any plans I had for the day.

         Pain has not only taken away my former "normal" life, sadly it has also taken away my relationships with 2 of my 3 remaining sisters.  I can't talk to them and under the circumstances, they don't want to talk to me.  They've become judgmental and unaccepting of -- me.  We have no contact now except an occasional email.  One of the two never emails at all.  There are no telephone calls.

         I am sad that they don't want me in their lives.  Yet, I cannot be treated as though I should be apologetic for what life has handed to me to bear.  I cannot be treated as though I am some burden to them (they live in other States, are not close-by, and are never responsible for my care, so the feeling of being a burden comes only from how they speak and act towards me). 

         No, "my experience is not your expectation...."  I cannot run to the mall with my sisters, or jump in the car to go to a restaurant for lunch/dunner with them.  I cannot go "see the sites" if / when they choose to visit me.  I can no longer get in my car to make the 12+ hour trip to see the one...or take an airplane across the country to see the other one.  I no longer have a job/work to tell them about, or to relate funny stories about my boss/coworkers.  I cannot even personally relate to things they experience out in the world now, like driving in traffic jams and the high cost of gas.  My world is no longer out in "the world."  My world is now this world, a much smaller world than I ever, ever, thought or dreamed or ever knew existed.  I never thought this would be my world at a young age.

          No, dear sisters, "my experience is not your expectation...."   And my expectation and hope is no one will ever have to go through this experience....