by Melody Chatelle, PhD

“Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends.” This quote comes from best-selling author Joan Didion in her memoir The Year of Magical Thinking, which chronicles the unexpected deaths of her husband and daughter in a short period of time. The quote is a vivid reminder of the uncertainty of life amidst the sheer reality that everyone dies.

While scholars remind us that although we intellectually know we will all die eventually, that particular time in our lives and the lives of those we love is often the most difficult and challenging. Communication scholars like Dr. Mark Knapp from The University of Texas and others suggest that the need for communicating with a person who is known to be dying is one of life’s most difficult communication challenges. It represents a particular sphere of communication that many do not want to think about, although most would like to have instant expertise when faced with such an encounter (Miller and Knapp, 1986).

In 1999 I became interested in end-of-life issues from a communication perspective after the deaths of my own mother and grandmother just 12 days apart. The death of my amazing mother was expected after her 17-year intermittent battle with cancer . The death of her mother 12 days prior, however, was completely unexpected. Although my grandmother was in good health for her age, she died only a few hours after we told her of my mother’s pending death. She simply slipped into a coma from which she never woke up. We believe she somehow willed herself to die.

From that experience began my personal journey of intense interest into end-of-life issues that continues to this day. I channeled my own grief into schoolwork, writing papers on pain and loss, clergy perspectives of grief, children and pain, and others. In the back of my mind, I continued to think about the issue of what it’s like to lose a child, even a daughter who may be 72 years old like my mother.

Journeys of Heartache and Grace: Conversations and Life Lessons from Young People with Serious Illnesses sprang out of that interest. The book is a compilation of stories from ill young people whom I had the privilege of interviewing as a part of my dissertation research. The stories are just like the young people themselves: amazing.

Take The Hooters Guy, a 16-year-old all-boy living with ataxia-telangiectasia (A-T), a progressive degenerative disease that over time destroys bodily functions. Richard had two goals in mind when I met him: 1) to graduate from high school; and 2) to go to the restaurant called Hooters, a restaurant known for its scantily-clad waitresses. Unfortunately Richard died before officially graduating, but he definitely made it to Hooters. Can you imagine the scene at the restaurant when Richard entered in his wheelchair, along with his mother, his hospice nurse, friends, and the hospice chaplain?

There’s also David from the story called Minister David Foretells. David was Diana Barrera’s second son; her first died of the same illness. David had spinal muscular atrophy (SMA). He was determined to leave a strong legacy of hope and goodwill in his community before he died, and that he did. Despite being confined to a wheelchair and facing many physical challenges, David spent much of his time helping others less fortunate, being an active member of his church, serving as a source of inspiration to others with illnesses like his, and giving back to the community at large.

In fact, David’s legacy also included making plans for his own ending and funeral service. During his last visit to the hospital he knew so well, David asked to be taken by his mother to the Tree of Life, a bronze piece of art in the shape of a tree with branches commemorating children who had died at the hospital. David wanted to pick out his own branch for when he died. Then, as a part of his funeral, David had pre-arranged to have a tape-recorded message played that said: “Bye, everybody. I shall miss you all.” This from a 13-year-old boy.

The stories are rich, and the lessons taken from them profound. These young people have an intensely clear sense of what is going to happen to them, even during their pending deaths. They have certain wishes in terms of how we converse with them that are applicable for people of all ages. At a minimum, they want to be treated the same as others, despite their physical situations.

Lessons from Journeys of Heartache and Grace apply to anyone who is seriously ill and/or dealing with a loved one with a chronic or terminal illness. They include:

Show up: No matter how difficult the situation is, do not distance yourself from it because you don’t know what to say or you think you will make the situation worse. Most likely your presence can help both the young person and the family of the loved one who is seriously ill.

Listen: When you visit a seriously or terminally ill person, just know that silence is ok. There’s no need to talk all the time or make small talk just to fill in the space and avoid feeling uncomfortable. As the saying goes, Silence is Golden.
Mirror the talk: Most of the young people said to me: why do people want to avoid the word ‘death’ so much? Others said they preferred not to talk a lot about dying even though that was the situation at hand. What that says to all of us is that there’s no cookie-cutter way of talking about end-of-life situations. Everyone is unique, so just listen to the words, phrases and attitudes being conveyed by the person who is ill or his or her family, and follow their lead.

Be sensitive – yet avoid sense-making: One of the most offensive comments the young people said that well-meaning people conveyed to them is don’t worry, everything will be alright or don’t worry - this is God’s will. While some people may believe that, perhaps a better way of communicating with an ill person is simply to be sensitive rather than trying to make sense of what is happening. Statements like I am so sorry you are going through this or is there anything I can help you with right now? may be most helpful.

Anticipate. Young people, like David, dying way too soon is just not the way it is supposed to be. Yet everyone dies and few families go without someone becoming seriously ill at some point. Give thought to this time in your life and how you want it to be. Talk with others in your immediate circle about your desires. Write out notes and pass them along. Take a cue from David and plan and talk with others about this unique time, as challenging as the situation may be.

Recovery from a serious illness or loss of life can take many forms and fashions. It can take a long time, a short time or in many cases, a life time. At a minimum, thinking about such situations, talking with others about them, and living through the pain can help immensely and is all a part of the recovery journey. Author Joan Didion is right in that life as we know it can change in a flash. Perhaps we can, and should, take some lessons about life and recovery and moving ahead from young people who are facing their endings with grit, determination, acceptance and wonderment.