As the year comes to an end in the midst of the hustle and bustle of the Holiday season, I decided to take a few moments to share some thoughts with the general rare disease community about facing a life more complex than others.
Most of us take a few moments this time every year to recall the joys, love, challenges and losses of the current year as it comes to a close and contemplate the hopes for the coming new year. Although we all have our yearly ups and downs, the rare disease community usually carries a greater burden than many facing increased challenges, loss and sadness as they or their family members navigate the rocky road of chronic and all too often progressive and terminal disease.
How does one find peace, solace or joy in the midst of seemingly overwhelming challenges and sadness? This is the quintessential question that I've asked myself during times of difficulty and certainly have inquired of families who seemingly are at peace in the midst of a tumultuous and chaotic situation and environment.
The answer seems to lie in the concepts of living in the moment and gratitude. Although seemingly simplistic ideas, they can be very difficult to obtain and achieve during very stressful and difficult times. From my own experience, when overwhelmed by circumstance I try to disconnect from the stressful racket in my head and take notice of that beautiful flower arrangement on the table, the joy of a child's smile, or the sunshine as it warms the chill and heaviness of my heart and soul during those hard moments of life. I also force my mind to redirect my thoughts to gratitude by writing down three things for which I am grateful. There is something almost magical about committing those three things to paper rather than just thinking about them. While some days, it can seem overwhelming to consider any good fortune in one's life, most of us can be grateful for something albeit sometimes something as seemingly inconsequential as the gentle touch of a friend when they reach out to hold our hand as we struggle to digest bad news or deal with other life crises.
During a particularly difficult time in my own life, my gratitude lists were often bleak but included every day my husband's name, my own greatest gift.
The path of all lives but particularly those in the chronic disease community can indeed be difficult but finding the joys and gifts amid the tears and sorrows make it all worthwhile. And when your valleys are deeper your summits are higher and often much more joyful than those of family and friends whose daily burdens are less challenging or less frequent.
When a close friend was unable to conceive she and her husband adopted a seemingly healthy little boy. But as the children of her family and friends, neighbors and colleagues grew and developed her own son never met his milestones and was soon struggling with frequent seizures. She was devastated and struggled to meet the demands of a working mom with a special needs child. Slowly, my friend grew into her new role of always looking for and embracing each and every positive step along the way. She beams now when her son smiles and is included in school events and while she knows that he will never function typically that does little to dampen her gratitude for the life he has and the joy he brings to her every moment.
So, my friends, colleagues, patients and community, during this joyous and reflective Holiday Season, my wish for you is peace, love, and contentment gained in the little moments and gratitude for what we do have in this sometimes difficult but overall wonderful life...
Stay tuned in the new year for blogs focused on the role of the PCP in chronic care management and the genetics of rare disease.
Fran Kendall, M.D.
This post is not meant to be a recommendation or a substitute for professional advice and services rendered by qualified doctors, allied medical personnel, and other professional services. The responsibility for any use of this information, or for proper medical treatment, rests with you.