Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group. © Jennifer Picciotto 11-30-18. First published in National Pain Report.
The holidays are a particularly stressful time for people who live with chronic pain. We are reminded more frequently of things we can no longer freely enjoy; things like going to parties, hosting a gathering, or enjoying the bustle of a crowd at a shopping mall. Managing chronic pain means living with restrictions, and the excesses – from food to fun – that accompany the holidays can feel overwhelming. When we can’t participate in festivities because of high pain levels, or when joining in results in a costly flare, we might sink into depression, find grief we thought we had worked through suddenly tender again, or risk isolating ourselves in an attempt to avoid facing how much our condition has affected our lives and relationships.
It is true that living with chronic pain means we have to ration everything we do. We engage in a guessing game as we try to estimate how much pain we risk by any individual action. How do I feel now, and how much time will I need before I am able to do something else? The loss of spontaneity, of being free to choose what we want to do, is one of the harshest realities we face. Forced to decline social events, we fall out of touch with friends and family, and our social circle shrinks. We are confronted by people who don’t, and in many cases are unable, to understand what we are going through, how we feel, how something they can’t even see can take such a toll on our day to day lives. Especially during holidays, with social and family gatherings and the feel-good atmosphere, this interpersonal disconnect can strain our ability to cope.
I am a firm believer in recognizing reality, of standing squarely in what is, and facing forward into whatever challenge may exist. So when the holidays come around, I acknowledge what I can, and what I can’t do. I lower my expectations. I recognize the fuzzy edges of loss, of longing, of wishing things were somehow different. I also take a good look around for what I continue to love about my life; the people who are there for me, the things I can still enjoy. I am nourished by friends, by the interests I can still pursue, by a simple moment of silence, by laughter, by reading a story and recognizing my own experience reflected in someone else’s journey.
It has taken some time, but I have learned to accept others for where they are in the moment too, what they can and can’t understand. I don’t need everyone to get me, and I recognize that many of the people I know, despite their happy holiday faces, are suffering immense invisible pain of their own. The Buddhist tradition, which teaches that suffering is a natural part of life, reminds me that while my suffering may be unique, it is not unusual. Rather, it is a link to all of humanity, to the tragic reality of how all of us suffer in the course of living. This knowledge allows me to be tender towards myself, and gentle toward others. When I feel lonely in my suffering, I am reminded of the invisible suffering of others.
During this holiday season, I hope that you will fearlessly face forward, recognizing all that you have survived, and the shocking resilience of the human spirit. I hope that you will have moments when your heart is full, saturated with the simple, unspeakable joy of being. I wish you patience and wisdom, and acceptance. I wish you the strength to be a shining chalice, a crucible brimming with the full range of emotions and experience. I wish you grace that you may weave a beautiful and intricate cloth from the simple strands of every moment, no matter how large or how small, how achingly joyous or how bitterly excruciating. Each moment is a filament in the fiber of our being, a link from the past to the future, and from who we once were to who we are becoming. I believe that we are capable of enduring our challenges, that we are changed by our experience, and that the future represents an opportunity for us to grow in friendship and compassion for one another, despite our physical limitations. During this holiday season, I wish you hope.