Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York, and, after relocating to California, spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her extensive personal knowledge and expertise to enlighten our readers regarding the challenges associated with chronic illness and their profound effects on family relationships and human dynamics.
“We study health, and we deliberate upon our meats and drink and air and exercises…But in a minute, a cannon batters all, overthrows all, demolishes all; a sickness unprevented for all our diligence, unsuspected for all our curiosity….summons us, seizes us, possesses us, destroys us in an instant.“ – John Donne
Most of us think of grief in terms of death and bereavement, but grief is a product of any profound loss. As humans, we grieve for many things–the loss of love, the loss of a job, the loss of a marriage or a friendship, the loss of a beloved pet. We also grieve deeply when we learn that we are losing our most precious possession — our health. Our grief is even more profound when that knowledge comes with the possibility of imminent death, as we anticipate the many losses that are to come.
“It just seemed so unreal–so completely unreal.”
-Jennifer, on her feelings when she heard her diagnosis of pancreatic cancer
Shock is the most common reaction experienced by patients who learn that they have a serious or terminal illness. Like Jennifer, they describe feeling numb, detached, unable to “feel” all of the intense emotions that they believe they are supposed to feel. Even when there has been good reason to suspect that there was something seriously wrong, most people manage to keep the possibility of a terminal diagnosis far out of their consciousness until they are confronted with the truth.
Like the physical shock experienced by the body after a profound trauma, the numbness that accompanies this first stage of grieving serves an important purpose.
Like the physical shock experienced by the body after a profound trauma, the numbness that accompanies this first stage of grieving serves an important purpose: It gives the mind time to process what is happening and prepare itself to act. Just as the physical body shuts down all nonessential processes in the wake of serious injury, the mind literally “shuts off” emotional input until it has a chance to adjust.
For some people this period of numbness lasts several days; for others it goes on for weeks or even months. Jennifer, for example, describes going through the first few weeks after her diagnosis “in a daze.”
“I knew what was happening,” she says. “I knew I should be feeling scared, angry, sad. I wanted to feel those things…to feel something. But I was just dead inside.”
Sooner or later, however, intense emotions begin to break through, although they almost never resemble the carefully ordered “stages of grief” we’ve been taught to expect. Certainly, all of the emotions associated with deep loss are there — anger, sadness, fear, longing, helplessness, despair — but they are neither logical nor controlled. “It’s like watching a train wreck in slow motion,” Jennifer says. “One moment I’m sitting in the living room calmly talking to my husband about what to have for dinner, and suddenly I’m sobbing uncontrollably and shaking like a leaf. It’s terrifying…I feel so out of control.”
Many people who are confronting a terminal diagnosis describe being on an emotional roller coaster: hopeful and upbeat one moment, terrified and tearful the next.
Nor is Jennifer’s experience at all unusual. Many people who are confronting a terminal diagnosis describe being on an emotional roller coaster: hopeful and upbeat one moment, terrified and tearful the next. Physical symptoms such as insomnia, stomach upset, muscle pain and headaches are also common, as are depression and even thoughts of suicide.
Navigating this landscape of intense and often conflicting emotions is immensely difficult. There are no road maps, no mile markers, no street lamps along the way. Even surrounded by supportive friends and family, many people facing a terminal illness feel isolated and alone. “How can I talk to my family about how I feel,” Jennifer says sadly, “when they are already in so much pain?”
It is an absolute certainty, however, that no one can cope with the grief that accompanies a terminal diagnosis alone. Just as the physical body needs help and support to recover from terrible trauma, the traumatized mind needs nurturing and comfort in order to heal and move on.
Whether that nurturing comes through individual counseling, a support group or spirituality and prayer, it is as much a part of coping with a serious illness as the medicines and treatments the ailing body receives. As Jennifer says when she talks about her support group, “Talking to other patients and hearing their stories lets me feel connected to something bigger than myself. It helps me see that I am not alone. It gives me hope.”
“Hope is the thing with feathers,
That perches in the soul
And sings the tune without words
And never stops at all –”