Wednesday, March 16, 2011

There are no guarantees....

Mindfulness is the aware, balanced acceptance of the present experience.
It isn't more complicated than that.
It is opening to or receiving the present moment, pleasant or unpleasant, just as it is,
without either clinging to it or rejecting it.
-Sylvia Boorstein

If one lives long enough, it becomes clear that there are no guarantees in life. There are moments, days and weeks when the lack of control feels overwhelming. This seems particularly true when a loved one is struggling with a chronic illness. I have a mother and a sister struggling with autoimmune diseases. My mother has fought this battle since my earliest memories. I lost a brother to suicide. Every family walks with joy and pain, wonderful bounties and excruciating losses. I often need to remind myself that facing these issues is as emotionally painful for me as anyone else around the world, yet my burden is lessened simply because of the luck of the draw. We are an upper middle class family born in a country with many, many resources. Things could be so much more difficult if we were living in poverty, didn’t have family and friends’ support, couldn’t read or write or speak the community language.

My daughter lives with bipolar disorder. Sometimes she “has” bipolar disorder and sometimes she “struggles with” bipolar disorder and, yes, sometimes she “suffers” from bipolar disorder. Yet it is still a painful struggle, not only for a person facing a chronic illness every single day, but for those who love him or her. I, too, have various relationships with her illness. When things are going well I am particularly aware of our incredible blessings or luck or whatever you want to call it. Yet when my mother falls or my sister struggles with new symptoms I find it difficult to count my blessings while fighting the worries that well up from my heart. When my daughter’s illness takes her into bumps or dips or even on roller-coaster rides I struggle against fear, anger and grief. Yet, I have no control. There is so much that I can do but also so much that I cannot. I cannot fix it or make it go away. I have tried negotiating with my Higher Being when my daughter was the sickest: “Give it to me. Let me have it. My daughter is young and just beginning her life. I can handle it.” But the answer is always, “No, sorry, not possible.”

Finally and ultimately I have no choice but to simply accept it. As a colleague once said about his relationship with his very ill son, “Sometimes all I can do is sit by the swamp with him and just be.” Just be. A concept so very difficult but something that I try to practice every single day. A concept exceedingly tested by the experiences of living with a chronic illness. I also remind myself that there are many positive and wonderful things that have come from this journey. Sometimes these are difficult to remember but so true: honesty, love, deeper friendships and relationship, commitment, strength, humility and patience. There is wonder at the strength of the human spirit of my daughter, my mother and my sister to move forward when faced again and again with incredible pain and worry beyond my own experiences. We are in this together. I will continue to work towards acceptance and embrace the simple joy found in the love of my family. I wish you the same.

From my blog at Child and Adolescent Bipolar Foundation.