Last week I was interviewed by a research assistant from the Rare Disease Foundation located in Vancouver, Canada. We talked about our journey as a family with Michael and his rare disease, SIOD, including the silent complications that are heavy burdens but often only recognized by families with chronic illness. All of which makes the dynamics of family life coupled with illness even more difficult. There were questions about my marriage to the same man for almost twenty five years despite tragic incidents. She asked about maintaining a family unit, as well as the underlying affects on siblings and extended family. She was surprised to hear about the multiple levels of support we had during Michael’s illness, his death and still have in our life. With most of the families she has talked to that is typically not the case, once again making our situation unique.
The interview gave me another opportunity to boast about our family and friends. We could not have done what we needed to do for Michael and for Jessica without the loving hands and feet of faithful family and friends. Their commitment to us was unfailing, sustaining us during the unthinkable. Often we ask ourselves, how is it possible to repay so many extreme acts of love and kindness. Asking that question over and over again revealed to us the importance of receiving with as much grace as giving. Not an easy task for two people who like to have the scales of give and take evenly balanced. During those years of exceptional generosity in almost every area of our life, we realized it was in our receiving that our family and friends became the answer to our prayers. It was purposeful service to a family with chronic illness that they themselves didn’t own but yet had a desire to share it with us and their beloved, Michael.
A wise woman once gave me this quote by W. Somerset Maugham, “We are not the same persons this year as last; nor are those we love. It is a happy chance if we, changing, continue to love a changed person.” For years now, I have carried that quote with me because loving a changed person is a true blessing in our life. Michael’s rare disease changed us, altering our course. Inevitably, changing the way we see things. The countless ways family and friends continue to love us unconditionally and unselfishly while we are changing, just as they did from the beginning of our journey, is yet another level of kindness and support being offered to us. That love, on its own, has changed us. People serving others in varying degrees, with no expectation of repayment in any way, is the true meaning of love with the word itself not even spoke.
The interview ended with me saying, “The patient perspective needs a face and a voice.” The changed person in me will be that, representing Michael’s courageous spirit in our efforts. Be the Change represents patients partnering with the medical community finding new ways to provide honest input, giving a voice to every child and family that faces what we faced. Be the Change will stand in the gap for families that don’t have the circle of support that we have.
Service is the center of Be the Change with our family and friends as the models. They represent the high quality relationships we need in health care. I trust and believe that powerful experiences will continue to flow from this network of extraordinary family and friends. Hopefully, our gratefulness for what was and what is will always be reflected in our new journey where, together, we will Be the Change.