Published on May 8, 2015
This past weekend Andrew and I traveled to Niagara Falls, Canada to join more than 200 CLL patients and their care partners to learn about the latest developments in treatment from top researchers and clinicians, to find out about clinical trials, and to make connections with others like us as a means of mutual support. Andrew moderated a patient panel where we heard about the varied experiences of diagnosis “out of the blue,” the trying time that “watch and wait” brings, the tough treatment choices and the ups and downs of getting through treatment, and the inspiring stories of how each person has coped with having a chronic illness as a strange bedfellow.
I had the honor of co-leading an informal discussion with more than 50 care partners at the conference. Together with a wonderfully warm and respected oncologist—Dr. Graeme Fraser—we spent the good part of an hour discussing the challenges of coping with the shock of a loved one's diagnosis…how to deal with the stress of juggling children, home duties, work obligations, and staying strong for a partner who is ill…when to ask for extra support from family, friends and professional help…and what kinds of changes in intimacy and communication can happen when couples are going through such a stressful experience, and how to come out the other side together. There were no right or wrong answers that came out of this discussion—rather, it was a chance for care partners to simply compare notes, to gain some ideas, and to drink in some encouragement from others who had been down the same road, and to realize that each of us is not alone. I didn’t decide to lead this care partner session because I felt that I have any clear answers or wisdom to share. I decided to commit time and energy to connecting with other care partners to “pay it forward.”
When Andrew was first diagnosed with CLL, I not only felt sorry for him. I felt sorry for me. I was angry at whatever greater force had brought this illness into our lives—asking “Why Andrew? Why me?” I was anxious, depressed, scared and very confused. It took compassionate counseling, medication, and the incredible love of family and friends to get me to an emotional place where I could fully be present and supportive to Andrew as he went through his journey as a patient. And it took the passage of time, Andrew’s transition from patient to survivor, some more counseling as a couple and individually, and sharing experiences along the way with other care partners to turn my self-pity into perspective. It’s a bit like climbing a big hill carrying a very heavy backpack. And when you finally reach the summit and look back at how far you have come…you have perspective. I put one foot in front of the other… my partner is with me now, and really all we have for sure is today. The rest is out of our hands. And so we keep on going—living life to the fullest, now. Perspective.
I believe that just as patients need lots of support and encouragement to go along with the medical treatments they need to get back to good health, care partners need their own kind of support in order to do what is needed for a loved one who is ill, recovering or is now a survivor who will always hold the specter of recurrence close at hand. Becoming a care mentor and advocate has channeled the energy it would take to feel sorry for myself into helping and supporting others—and it makes my journey easier, more gratifying and life-affirming.
Have you been able to find perspective? How? Tell me in the comments section.
Are you a care partner looking for more advice and support? Visit our Care Partner Center.