Facing life difficulties with grace and courage | Candace McKibben
Perhaps, like me, you are aware of people who have found a way to face uncertainty with grace and courage. The cause of the uncertainty may be born of family dynamics, economic fragility, physical health concerns, spiritual struggles, mental health issues, grief, addiction, or some combination of these factors.
Sometimes the factors can be addressed. And sometimes they are simply a given. But I always find myself in awe of the resiliency of the human spirit in coping with the uncertainty of life.
One of the more famous, compelling, and true first sentences of best-selling books may be from the pen of psychiatrist M. Scott Peck in “The Road Less Traveled,” his first of 15 publications. Simply stated it says, “Life is difficult.”
While certainly more difficult for some than for others, life is complex, and I am inspired by those who find the will and strength to embrace life fully against the odds.
It is not that such people do not have their moments. It is not that they are always able to be positive or hopeful. But by their own inner strength, the support of family and friends, the gifts of nature, the grace of God, the benevolence of the universe, they somehow manage to keep moving forward and often with joy.
I have such a friend and congregant who for the last nearly four years has lived with remarkable grace and courage in the face of a diagnosis that, when we first heard it, sent us immediately to the internet to even begin to know what it involved. Retroperitoneal Leiomyosarcoma (LMS) of the Inferior Vena Cava is an extremely rare form of an already extremely rare cancer.
Sarcoma Awareness Month
July is National Sarcoma Awareness Month and July 15 is the date designated as LMS Awareness Day. Sarcoma is one percent of all cancers and there are between 75 and 100 sarcoma subtypes depending on the source consulted. Sarcomas are divided into two main groups: bone sarcomas and soft tissue sarcomas. They are further sub-classified based on the type of presumed cell of origin found in the tumor. They all share certain microscopic characteristics and have similar symptoms.
LMS is a type of soft tissue growth that can develop in muscle, fat, blood vessels, or any of the other tissues that support, surround and protect the organs of the body. It accounts for between 7 and 11% of the 1% of all cancers classified as sarcomas. The malignant tumor of smooth muscle cells can arise almost anywhere in the body, but is most common in the uterus, abdomen, or pelvis.
LMS of a vascular origin is the rarest form of LMS. It may develop in any of the major blood vessels of the body, including the pulmonary artery or peripheral arteries that transport blood to the abdomen and extremities. More than half of vascular LMS cases involve the inferior vena cava, which is the largest vein in the body and carries oxygen-depleted blood from the lower part of the body back to the heart.
In researching for this article, I consulted websites for the LMS Support & Direct Research Foundation, Sarcoma Alliance, City of Hope, National Organization for Rare Disorders, MD Anderson Cancer Center, and the National LMS Foundation, but because of the rarity of the disease, the research is limited and often based on few cases.
What seemed most helpful to me were the ways in which the courageous and hopeful people living with LMS share their stories with and offer encouragement to each other.
Living with an aggressive disease
What I have learned from my dear friend, Jackie, is the ways in which living with this rare and aggressive disease not only has impacted her life since diagnosis and as she looks forward, but also as she looks back. As another good friend wisely said more than once during her life journey, “We make the best decision we can with the information that we have and learn to live with the decisions we make.”
Our health impacts not only our bodies but all other dimensions of our lives, including our employment, our finances, our priorities, and our spiritual and emotional wellness.
When diagnosed, my friend, Jackie, considered the best information she could garner to make the best decisions she could, not only about her health but also her life, and she moves forward with grace and courage. She has always been a person of joy and hope and continues to be, even in the face of adversity. I want to be like Jackie.
Food drive: Round up the goods for Stuff the Truck food drive at Good Shepherd Church
Paying it forward
Recently, Jackie researched a way in which she can pay it forward regarding this rarest of diseases by being part of a medical study supported by the National LMS Foundation.
The goal of the “Count Me In” project is to partner with patients with LMS around the United States and Canada to study their particular cancer, using cutting-edge genomic and molecular research studies performed at the Broad Institute. They also hope to leverage technology to allow patients to participate in these studies regardless of where they are treated.
Jackie has already personally given information about the project to the doctors on her medical team at Mayo Clinic in Jacksonville and here in Tallahassee, so that they will be aware of her participation. She also released her medical information to the research group who needs as many people as possible with the disease to participate, considering its rarity.
Support and inspiration
The project is intentional about not only considering the medical records of people with LMS but also their voices in how to strengthen physician/patient partnerships. It gives her hope to be involved in this important effort.
Perhaps you have a friend with a rare disease or condition who is making the best of a difficult life situation. Maybe it is a good time to let that friend know how inspiring they are to you. Perhaps you are a person with a rare disease or difficult condition who is finding a way to live with grace and courage, and I pray you realize how important you are to those who love you and are inspired by your life.
If you are someone who is struggling with life’s difficulties, I pray you can find the will to reach out to a family member, friend, counselor, minister, medical person, or perhaps a hotline like 2-1-1 Big Bend by calling 211 or 850-617-6333 or by texting your zip code to 898211 for support and encouragement.
And I pray we all will be more sensitive to the struggles of each other so that difficulties can be shared, and grace and courage abound.
The Rev. Candace McKibben is an ordained minister and pastor of Tallahassee Fellowship.
This article originally appeared on Tallahassee Democrat: Facing life difficulties with grace and courage is inspiring
