I’ve been thinking about my friend and her heartfelt desire not to be defined by physical limitations caused by a chronic and incurable disease. I bristle at the thought that anyone would make assumptions or label her based solely on limitations. I suspect anyone doing so would be a stranger. Those who know her know she’s so much more than any limitation.
Defining someone by disability isn’t the only way we short change ourselves or others. Consider all the assumptions we make based on casual observation, something we’ve heard, or attitudes instilled in us. These “settled ways of thinking” can become so ingrained that we rarely question their validity. Experiences and observations that challenge our beliefs raise doubts. Being willing to face our doubts takes an open mind and heart. Once we start questioning one attitude, we likely become more willing to re-consider another. This can put us at odds with family and friends. Battles to change popular opinion can be fierce and long. And some people never change their view.
Attitudes towards women, race, sexual orientation, religious tolerance have changed dramatically in my lifetime, yet battles rage on, passionately and stridently. I’d welcome a paradigm shift to self-reflection and compassion. To ratcheting down the volume in an effort to learn how to sit with those whose beliefs differ from ours, engage in dialogue, find common ground where we can, show respect and be respected.
Not so long ago, tattoos were a fringe practice. Something men might choose to get, and those who did were primarily soldiers, sailors, marines, …and bikers. “Nice people” didn’t “go there.” Then attitudes began to shift, beginning, of course, with rebellious youth, both males and females. Initially being taken seriously professionally required folks to keep their tats under wraps, either by personaldecision or employer dictates. Gradually the practice became mainstream, and fewer and fewer restrictions apply in the workplace. Tattoos have become more elaborate, more an art form than a carnival side show. Such shifts in attitude are seismic. Now anyone can embrace body art, and anyone who doesn’t want to, doesn’t.
Recently I received an email from a friend. She was writing to family and friends, with encouragement from her internist of many years, to address an elephant in the living room. She experienced progressive symptoms affecting her ability to walk months before being diagnosed with the rare, chronic, progressive, auto-immune disease CIDP,for which there is no cure. If the only USDA-approved treatment continues to manage her symptoms, she can hope to be among the 90% who can walk without aid, except during periods of regression.
A resilient woman who weathered Guillian Barre Syndrome as an adolescent, she has remained physically active, despite knee and ankle surgeries. Many who know her likely assigned her increasingly halting gait and occasional use of a cane, to the ravages of injury and age and would ask how her ankle was. You see, except for those she trusted most, she’d kept the new diagnosis under wraps. That’s her prerogative of course.
The internist, however, encouraged disclosure believing she will benefit from help and support from family and friends as she navigates the challenges and obstacles before her. None of us can make those disappear. We would, if we could. Like her, we have to accept the chronicity of CIDP. What we can do is rally around her, become her teammates. Encourage her to remain optimistic and to continue adjunct practices that improve her quality of life. Such a commitment of time and energy would be a challenge for all of us. Think about people who resolve to exercise regularly, then falter. Having someone hold us accountable improves the likelihood that we’ll stay the course.
We can, as now she’s given her permission, insist she use a cane or walker when safety or comfort dictate. I’m thinking we can also add artistic and creative flourishes to that cane and walker. Take “if life gives you lemons, make lemonade” to a new realm. Shall we knit bomb or decoupage a cane? Maybe both. Having a choice of canes has its advantages.
Writing that email was hard for my friend. Independent, not one to ask for help, yet quick to respond to the needs of others, she has never wanted to be defined by her physical limitations. She fears that CIDP with its chronicity and incurability could alter the way people think of her.
That’s what prompted me to write this blog. Would anyone of us like being defined by a single attribute? I think not. We’re all so much more than any single trait could suggest. Yet, like gender, race, and ethnicity, some limitations are so obvious that we’re apt to register the limitation as a primary attribute. That’s a disservice. When we define a person by disability, we’re being disrespectful.
In response to her fear, I emailed a list of all the qualities she possesses that make her who she is and assured her that those distinctions are more important than physical limitations. I also urged her to take names of any who appear only to see her limitations, promising to get up a posse and kick butt for her.
Honestly I cannot imagine anyone who knows this woman being anything but supportive, but you never know. I better get back to Tai Chi. Just in case my “services” are needed. I made a promise after all;-).
Robert Frost wrote in his lyric poem, The Road Not Taken,“I took the road less travelled by, And that has made all the difference.”
Our guest, Korie Leigh, a certified child life specialist and certified thanatologist, knows that choice well. She began working in a traditional setting. Then, responding to inner callings, she chose to focus on end of life and grief, in nontraditional settings. Currently in private practice, Korie also teaches at the graduate level, conducts research, and writes.
Let’s be honest, dying and death are hard topics to discuss and even harder to face. We become uncomfortable, aren’t sure what to say or how to act. Yet, as my mother, a nurse by profession and a pragmatist by nature, would point out, “we’re born knowing we’ll die.” She knew how to be with the dying and the grieving, how to bear witness to their grief without being undone by it.
Korie Leigh does too. She grew so passionate about supporting the grieving that she earned a MA in thanatology, the study of death and dying. Currently a doctoral candidate in integral and transpersonal psychology, her dissertation focuses on “legacy building and its impact on bereaved parents and siblings.” Her professional journey is a series of passionate responses to her deeply felt sense of the purposefulness in her life.
She begins with a quote,
“Everyone has been made for some particular work, and the desire for that work has been put into every heart” –Rumi
From the time I was a young child I knew I wanted to work in the helping profession. At the age of seven, I recall sharing with my second grade teacher my desire to be a counselor with “sick kids”. Little did I know that this inner calling, this deep knowing, would lead me on a career path that would define my life’s purpose. The path would be filled with obstacles unknown, immense joy that filled my soul, and such sadness and pain that struck deep within the core of my existence.
Along this path, I completed my BA in child life at Wheelock College in Boston, MA. With a passion for music and the expressive arts, I was constantly trying to push the limits of the traditional role of a child life specialist. Every practicum, internship, or placement I sought to challenge existing norms, asked hard questions, and fought to broaden the scope of child life. Though I had a handful of mentors, I generally encountered great resistance and was told over and over again that the role of a child life specialist was to “first and foremost be a play lady”.
Is play important? Yes. Is it how children learn, grow, and express? Yes. Is it an integral tool for children coping with stress, illness, and tragedy? Yes. Is it the core of child life?In my opinion, No. And I would soon find out that this core, which at first I only intuitively understood, is so much more than play alone.
Soon after I began working my first position as a CCLS in intensive care settings, I was faced with an unusually high level of death and loss. And yet, during my internship, I was the only student from my class that never experienced the death of a patient. Frankly, I was not interested in death and end of life. However, I ended up working with the most medically fragile children in the hospital, an experience that makes me recall the saying, “sometimes our soul knows what we want before our hearts and heads do”.During this short time on the intensive care unit, I experienced upwards of four to seven deaths a week within the first few months. During this emotional time, I came to realize that not only was I interested in working with death and grief, I was deeply passionate about doing so. Yet I was ill equipped at the time to deal with the magnitude of loss and suffering I encountered – not just with parents and siblings, but also with my own relationship to death and loss.
I left my ICU position and enrolled in a Thanatology Masters degree program at City University of New York, Brooklyn. Thanatology is the study of death and dying and thus, I spent three years immersed in these highly sensitive and culturally taboo topics. Concurrent with this program, I held a variety of traditional child life positions, working in a one-person program at a hospital in Queens, NY, then in hematology/oncology at a hospital in Manhattan. After completing my degree and successfully passing the CT (certified thanatolgoist) exam, I left the traditional field of child life and embarked on a new path – hospice and palliative care.
Working as a bereavement counselor in a city-wide hospice agency, I was profoundly impacted by the nature of my profession. During my time tending to the end of life needs of patients’ families, I began to understand the ‘core of child life’ that I had struggled to articulate in positions past. The core was uncovering itself and leading me to realize that child life is not limited to hospital walls, pediatric patients, or even medical experiences. Rather, this core is rooted in empathy, unconditional positive regard, the ability to bear witness to suffering, and the self awareness to hold space while placing my own agenda, beliefs, and values aside for the sake of true emotional expression.
Shortly after I began working in adult hospice, I moved to California to pursue my dream career of working at a pediatric palliative care facility. There I held a dual position as a child life specialist and bereavement coordinator. However, as life had shown me in the past, our souls know far deeper and sooner what we desire than do our heads and hearts. While pursuing this deeply meaningful and passionate work, I began to experience a longing to contribute to the larger field of child life and find ways to legitimize our profession beyond the walls of medical facilities through research and scholarship. Thus, I enrolled in a PhD program in Transpersonal Psychology.
Transpersonal psychology is a holistic field dedicated to acknowledging the full scope of human experience. This scope, for me, includes examining experiences of suffering, trauma, grief, and the subsequent processes of post traumatic growth, meaning making, and spiritual growth that result from such experiences. During this time I experienced a flood of personal, professional, and spiritual growth. It challenged my comfort zone, shifted deeply held assumptions and beliefs, and led me to embark on a new journey in private practice.
Working in private practice did not come easy. In fact it took me nearly four years to develop my practice enough to have a steady client population. While focusing on childhood grief and loss, I also work with children, adults, and families experiencing a host of stressful life transitions. I also began lecturing at the graduate level to child life, early childhood, infant mental health, and special education students at Mills College, in Oakland, CA.
I currently work as an assistant adjunct professor, internship supervisor, and academic advisor to the graduate child life students at Mills College. Some of the courses I teach include The Hospitalized Child, Childhood Grief & Loss, and History & Theories of Play. I still see clients in my practice and am always finding new ways to reach out to the community to provide child life and grief counseling. I am now in the final stages of my dissertation process on the topic of legacy building and its impact on bereaved parents and siblings, and will defend my research in the early fall of 2016.
Throughout my 10+ years of child life and grief work, I feel blessed to be constantly learning from and growing with the children and families I work with. I have tremendous respect and gratitude for the countless opportunities I have been offered to walk along side and companion parents and siblings through their grief. I have much to say about grief, loss, compassion, and the human capacity to share pain and grief with others. For now, I will leave you with these thoughts.
1. Grief is a journey, not a destination. What we, as a western culture, understand about grief is often wrong. And through its wrongness, we continue to disenfranchise and silence millions of grievers, children especially. The notion that grief comes in stages, phases, or tasks for that matter is helpful for our desire to make sense of and compartmentalize an experience which by its very nature is unpredictable and intense. But these stages, phases, or tasks can also limit our understanding of the grief experience.
2. The death of a loved one fundamentally changes you. The notion that you can ‘go back to normal’ or simply ‘move on’ after a death is not accurate. There are of course ways by which we can integrate and make sense of death and loss, but simply going back to what was is not a realistic goal for this process.
3. Childhood grief looks different and lasts longer than adult grief. Due to the unique aspects that development plays in a child’s ability to understand the finality of death, the grief process of children is constantly evolving. As children reach new cognitive and personal understandings of death, they must revisit their loss and their grief in new and unfolding ways. This happens over the course of a lifetime. As children reach and meet new milestones, so too they must integrate and make sense of their loss.
4. Be a companion-not an advice giver. For those of us who support and love others in our lives who are experiencing death and loss, one of the best things we can do is walk along side our friends and peers in their grief. Grief and the process of grieving needs to be witnessed, held, and honored with respect. Provide a safe space for peers and loved ones to feel what they need to feel, without judgment or the advice to “move on”. Some of the most hurtful experiences bereaved parents tell me are the little comments that friends or family say, such as “God needed another angel”, “he/she’s in a better place”, or even “you can always have another child”. If you don’t know what to say, simply say “I can see you are really hurting now. I don’t know what to say. Can I sit here with you and hold your hand?”
5. There is no right way to grieve, only your way. We are constantly flooded with information about how to grieve. Whether it be through cultural or religion norms, we have programmed ourselves to limit our grief expression. If someone is not crying, there must be something wrong. If someone is crying too much, there must be something wrong. If someone is struggling, there must be something wrong. If someone is not struggling enough, there must be something wrong. We, in this western culture, have made a habit out of shaming others into believing they are not grieving the right way, when in fact there is no right way. There is only your way, with your heart, your culture, your expression, and your coping tools. We need greater permission to allow ourselves to feel what we need to feel, and provide one another with the space and tools to do so.
Korie Leigh offers services for professionals, from trainings and presentations to self-care workshops and retreats and both child life and bereavement and grief services to individuals and families. Her passion for expressive arts and knowledge of holistic practices, allow Korie to incorporate the arts, mindfulness, guided imagery, and Reiki into her practice. And she makes home visits! She understands the challenges families face in getting to appointments and recognizes they feel safest and most comfortable in their own home. That’s proof of her compassion and commitment to service. www.expressive-coping.com.
When someone beloved dies, sharing that information with a child can be difficult. If the death resulted from suicide, often caregivers find themselves unwilling to share the cause of death. That’s a disservice. Keeping a secret does not protect a child from the truth and erodes trust. We need to be sensitive to the developmental level of the child, use age-appropriate language, and provide honest answers to all questions. Honesty builds trust, essential for healthy relationships and the giving and receiving of emotional support.
My mother used to say, “little pitchers have big ears,” meaning that adults may think children are oblivious to what’s going on, but they aren’t. Morgan Livingstone, a child life specialist working with child survivors of death by suicide, believes “that telling kids the truth and providing support for coping is essential, with no deception or secrets which can cause even more stress in an already stressed family.”
Fred Rogers had a gift for recognizing universal human needs and sharing his insights in ways everyone can understand. “Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.” Death by suicide is mentionable. Talking honestly about it makes the feelings more manageable for children and adults alike.
Recently my 93 year old Mother completed a six year journey with lymphoma. Deeply spiritual, she chose to live simply and embrace life, challenges and blessings alike, with eyes and heart wide open. As a nurse, Mom knew the path she was on. As a person, she chose how she’d travel: fully engaged, embracing joy, showing gratitude.
Just ask her hospice team. One and all grew to love this woman who lived the prayer of St. Francis of Assisi, asking not so much “to be consoled as to console, to be understood as to understand, to be loved as to love”. Mom chose a faith based hospice and embraced its practice of offering to pray with the patient at the end of a visit. Everyone was amazed when, visit after visit, Mom added her own prayer for “this angel who came to help me” and the organization as a whole. This practice continued until she became too weak to speak. Even then, I suspect Mom heard the prayers and responded with silent ones.
There’s a lesson here. While we cannot control everything that happens, we can control how we respond. My Mother was not perfect, but she understood perfectly that how she played the hand dealt her would make all the difference. And so it is for all of us.
As a parent at Pacific Oaks Children’s School I learned the importance of taking a compassionate, straight forward approach to “tender topics.” Doing so allays fears , builds trust, and supports emotional health.
What a child , or an adult, for that matter, imagines in the absence of factual information is often scarier than the truth. When someone takes time to explain the situation, answer our questions, and provide emotional support, we know what’s up and cope better. So do children.
My mother cautions that “little pitchers have big ears.” We may think children are unaware, but more often than not they’ve “gotten wind that something’s up” and have a need to know what’s what. Otherwise they become fearful and imagine the worst.
Learning to trust is essential to mental and emotional wellbeing. Children learn to trust when adults take their needs seriously, provide age appropriate answers to their questions and consistent, compassionate support.
We do not have all the answers, and we need to say so when faced with an unanswerable question. Such honesty builds trust. Asking the child what he thinks shows respect, provides valuable insight into his understanding and invites on-going dialogue.
Talking about death is hard, discussing the topic with a child even harder. The exquisitely illustrated book Lifetimes: A Beautiful Way to Explain Death to Children provides a compassionate way to begin, gently explaining how everything living has a life time that begins at birth and ends at death. What lies between is a unique lifetime. Lifetimes vary from species to species, and circumstances affect their lengths. Thus we come to understand death as part of a cycle, the end of a lifetime. Saying good-bye is never easy. Celebrating and cherishing that special lifetime we shared gives us comfort.
Reflect on this sage advice from Fred Rogers. “Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.”
He’s absolutely right. Even so, we may hesitate. How do we know who we can trust? How do we begin a conversation about our feelings? Conversely, what do we do when we know someone is struggling with unexpressed feelings? We need to respect privacy, yet until we demonstrate our willingness to have “that important talk,” the mentionable cannot be managed.
No one knows all the answers. Yet we’re wise to reflect upon the questions, particularly when the one with an unexpressed mentionable is a child. What we do will make a difference. Just knowing we’re not alone is an invaluable gift.
One way to begin a conversation with a child is through puppets. Find an appealing one and let him begin the conversation. I like silly puppets, likely because a furry red one sporting a wild stock of black hair and a Jimmy Durante nose, saved the day for my husband and me years ago when our young son fell ill. Named Geezer, neither our son nor anyone else could look at that puppet without smiling. My husband would slip that puppet on his hand, and Geezer would “work his magic,” eliciting and sharing feelings none of us could have otherwise. Geezer made our hearts lighter and our mentionable more manageable.
Fred Rogers had a gift for recognizing universal human needs and sharing his insights in succinct observations. This is a favorite of mine. “Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.”
We all have feelings that overwhelm and distress us. Whether and how we express these feelings affects our sense of wellbeing and how we interact with others. Some of us internalize; others articulate. Hiding gives feelings power over us and limits our choices. Expressing shows self-confidence and trust in the people with whom we share our feelings. Those of us so entrusted have an obligation to listen with compassion and offer support in finding solutions that empower.
Whether we’re listening to a child, peer, or elder express distressing feelings, what we most need to remember is that we’ve been chosen. Our reaction will make all the difference. Set aside judgment, focus on what’s being shared, then ask questions and explore solutions. None of us deserves to be dismissed or have our feelings ignored or belittled. We all deserve compassion and support. Trust and mutual respect are key.
Recently the Birth to Five Vision Network held its annual gathering of families with children who are blind or visually impaired. Blind Children’s Learning Center in Santa Ana, California, hosted the event while other members of the network pitched in to do all that needs doing when guests are expected, from greeting to setting up, providing day care for the children ,and preparing and serving continental breakfast and a casual family-friendly lunch.
This event provides an opportunity for families to make contacts that alleviate the isolation accompanying the birth of a child with special needs. All these children share blindness or visual impairments; most have multiple disabilities. One family drove all the way from Tijuana, Mexico, motivated by the prospect of meeting other parents who share their challenges.
Parents become acquainted over coffee, then, leaving the care of their children to network volunteers, attend workshops designed to share valuable information and support parents in their journeys with their children. Each year the organizing committee invites PlayopolisToys to exhibit toys. Parents are urged to spend time playing with the toys and asking questions. Many parents, on seeing a toy they think their child will find inviting, test their intuition. Sometimes the child takes an interest; sometimes not. All kiddos have a way of rejecting, for no discernible reason, a toy a parent thinks is ideal. At least that’s been my experience.
While waiting for parents to “come out and play,” I found myself chatting with network member Pamela Driscoll, a mother of an adult son with special needs and a teacher of blind and visually impaired children. She paused to share an experience from the gathering a year earlier. She told me about walking across the parking lot as parents were strapping children into car seats for the drive home and coming upon a crying mother.
To her surprise, she discovered these were tears of joy. The mother was crying because for the first time in her child’s life, the child had responded to a toy. She was overcome by the joy of watching her child become engaged in play.
I remain grateful, both for the thoughtfulness of the one who cared enough to share her experience with me and for knowing that PlayopolisToys had a hand in making this joyful moment happen. That rewarding, bittersweet moment informs our efforts to find the “perfect” toy for every child.