Resources
Illness, Death, Grief and Loss
Resources:
The Mayo Clinic
A well-known, privately funded institution. Offers patient care, support groups, a library of information that includes concise, easy-to-read data sheets on illnesses, diagnoses, symptoms, drugs, and a myriad of medical topics.
Medscape
A reputable site that offers articles, in depth descriptions of various illness conditions, pharmaceuticals, updated news and information in the medical field. Their website is expansive. Includes an easy app, tools that list your personal medications and searches for drug-drug interactions, as well as up-dated information as research unfolds.
Multiple Chronic Conditions Resource Center
Resources on health policy, clinical care and complex needs of people living with multiple chronic illnesses.
http://www.multiplechronicconditions.org
Center to Advance Palliative Care
Detailed information on resources through local hospice and palliative care organizations. Differences are explained, as well as insurance coverage, caregiver information, contacts and other resources.
National Institutes of Health
A federal government funded institution, national clearing house for research, information, and resources. Comprehensive website offers updated well-documented information.
National Organization for Rare Disorders
Lists rare, difficult-to-diagnose, misunderstood and under-researched diseases, treatment options, and research. Informative and supportive.
National Library of Medicine
Readable, accessible articles gathered from established and reputable medical research institutions and publications. Complete listing with detailed information on approved pharmaceuticals through their Daily Meds website.
https://www.nlm.nih.gov
https://dailymed.nlm.nih.gov/dailymed
Office of the American with Disabilities Act
Washington, DC. Offers guides, advice, legal interpretation of rights of disabled people at work, in society and the marketplace.
Books:
Among the many books I have read, this list contains a few older classics, as well as some newer publications on the topic of illness, death, grief and loss.
Beisser, Arnold R. Flying Without Wings: Personal Reflections on Being Disabled. New York: Doubleday, 1989. A personal and vivid account of a man’s attempt to find meaning in his life following the onset of chronic illness.
Bernhard, Toni. How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Boston: Wisdom Publications, 2010. A book one might refer to again-and-again, as approaching and handling the stages and challenges of living with chronic illness.
Bolen, Jean Shinoda Bolen, MD. Close to the Bone: Life-Threatening Illness and the Search for Meaning. New York: Scribner, 1996. Insightful and soulful approaches and thoughts for those facing their own or another’s illness, disease, or death. Compassionate and enlightening.
Boss, Pauline. The Myth of Closure: Ambiguous Loss in a Time of Pandemic and Change. New York: Norton, 2022. Solace, wisdom, perspective and advice on living with unresolved grief.
Butler, Katy. The Art of Dying Well: A Practical Guide to a Good End of Life. New York: Scribner, 2019. Navigating and facing the end-stage of life. Ideas, decisions and personal narrative included.
Cousins, Norman. Anatomy of an Illness as Perceived by the Patient: Reflection on Healing and Regeneration. New York: Bantam Books, 1979. A personal account of a man’s ability to use humor to help his body heal from crippling illness.
Edwards, Laurie. In the Kingdom of the Sick: A Social History of Chronic Illness in America. New York: Bloomsbury, 2013. Legal rights, patient empowerment, history, perspectives on the medical establishment.
Groopman, Jerome, MD. How Doctors Think. New York: Houghton Mifflin, 2007. Unique, notable, informative and practical advice.
Kalanithi, Paul. When Breath Becomes Air: What Makes Life Worth Living in the Face of Death? London: Penguin Random House, 2016. Approaches life’s existential questions in the face of loss, illness and death.
Lesser, Elizabeth. Marrow: Love, Loss, and What Matters Most. New York: Harper Wave, 2016. In the face of death and loss, this is personal, transformative, thoughtful.
Levine, Stephen. Unattended Sorrow: Recovering from Loss and Reviving the Heart. New York: Rodale, 2005. Healing and awareness in grief, loss, death, sadness and fear.
Lubkin, Ilene Morof, and Pamala D. Larsen. Chronic Illness: Impact and Intervention. Eighth Edition. Massachusetts: Jones & Bartlett Learning, 2013. Over 700 pages of resources addressing the practical, medical, and social aspects of chronic illness. Includes facing stigma, social isolation, adaptation, body image, quality-of-life, health regimens, sexuality, self-care, various therapies, home health, long term and palliative care, rehabilitation, and more.
O’Rourke, Meghan. The Invisible Kingdom: Reimagining Chronic Illness. New York: Riverhead Books, 2022. Honest, candid, well-written, powerful. Personal, universal experiences of life with chronic illness.
Pogrebin, Letty Cottin. How to be a Friend to a Friend who is Sick. New York: PublicAffairs, 2013. Everything from conversation, visits, assistance, gifts, money, faith and death. With humor, insight and practical considerations.
Siegel, Bernie S., MD. Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon’s Experience with Exceptional Patients. A doctor’s rendition of his encounters with the miraculous healing and recovery of certain patients, and their similarities in approaching illness.
Strong, Maggie. Mainstay: For the Well Spouse of the Chronically Ill. Penguin Books, 1988. A personal account of the emotional and practical side of being related to a person with chronic illness.
Weisman, Jamie, MD. As I Live and Breathe: notes of a patient-doctor. New York: North Point Press, 2002. Honest rendition of confronting the challenges of chronic illness, from the perspective of a physician who becomes ill.
Williams, Terry Tempest. Refuge: An Unnatural History of Family and Place. New York: Random House, 2001. A narrative of her mother’s cancer, set in the natural environment, filled with courage, compassion, grace and insight.
Sauna Detoxification
Resources:
American Academy of Environmental Medicine (AAEM)
Founded in 1965, an international organization of physicians, practitioners and other healthcare professionals addressing the effects of the environment on human health.
National Institute of Neurological Disorders and Stroke
Explores the results of exposure to natural or manmade toxic substances that alter the normal activity of the nervous system. Neurotoxicity.
Temecula Center for Integrative Medicine
The use of sauna for detox, healing and other health benefits.
Books:
Roeder, Giselle. Sauna: Hottest Way to Good Health. Benefits of sauna detoxification. Vancouver: Alive Books, 2001.
Mothers Without Custody
Resources:
Legal Momentum
Support for mothers in custody battles, or mothers who have been victims of domestic violence.
The Liz Library
Law and policy, non-violence, father’s right’s, mother’s rights, parental alienation, psychology, women’s history.
Mothers of Valor
The court-abuse and vilification of Dr. Amy Neustein who fought bravely for her child’s health, life and safety.
Rights for Mothers
Parental rights of mothers relating to custody, visitation, child support, paternity or domestic violence.
BOOKS:
Chesler, Phyllis. Mothers on Trial: The Battle for Children and Custody. Chicago: Lawrence Hill Books, 1986, 1987, 2011. Essential and liberating examination of the painful treatment of mothers by the justice system.
Pratt, Minnie Bruce. Crime Against Nature, New York: Firebrand Books 1990. Forceful and moving story of a mother’s loss of her children.
Rose and Etlin. The Hostage Child: Sex Abuse Allegations in Custody Disputes, Indiana University Press, 1996. Historical perspectives from the Morgan custody case, through 206 other cases representing anti-mother bias in the courts. Academic, Provocative.