ANATOMY OF AN ILLNESS FROM THE PERSPECTIVE OF LONG-TERM RECOVERY : An On-Going Study of Issues and Resources from Crisis to Recovery
by
Gordon Chapman and Jane Roberts Chapman
Contents
Go to chapters by clicking on blue chapter title links.
Chapter 1.
Where We are Going
Stories from the Path
Designing the Road Map
Survival-stabilization-rehabilitation-recovery
Working Definitions for Rehabilitation and Recovery
Re-writing the script to meet the challenge
Functional view of the problem
Things to Do Checklist
Useful Publications
Useful Websites
PART I. SURVIVAL
Chapter 2.
Survival: The First Week
Stories from the Path
Discovery, Decision, Delegation, Determination
In the Intensive Care
Unit
Things to Do Checklist
Useful Publications
Useful Websites
Chapter 3. Survival: The Second Week
Stories from the Path
Their Team and Your Team
Their Team
Your Team
Things to Do Checklist
Constructing Your Team
Useful Publications
Useful Websites
Chapter 4. Survival: The Third Week
Stories from the Path
Near Death Experience (NDE)
Angels
Stories from the Path
Let go, let God
Power of Positive Thinking
Things to Do Checklist
Constructing Your Team
Useful Publications
Useful Websites
Chapter
5. Intermediate Care
Stories from the Path
Summary of Resource Development Thus Far
Resources to Develop During
Intermediate Care
Things to Do Checklist
Constructing Your
Team
Useful Publications
Useful Websites
PART II. REHABILITATION
The exploration of rehabilitation in this section are based on views such as the findings by a 1998 NIH “consensus development conference” on the topic Rehabilitation of Persons with Traumatic Brain Injury. These views apply as well to closed-head injury (acquired brain injury) and to catastrophic illness in general.
Summary
Most approaches to TBI rehabilitation involve a traditional medical perspective.
A major limitation within the field of TBI rehabilitation is the narrow focus of current medical restoration approaches; the focus tends to be on enhancing capabilities of persons with TBI to help them adapt to life circumstances. However, new models of rehabilitation emphasize the parallel importance of environmental modification in order to create enabling conditions for the individual. . . . There is little recognition that TBI is frequently a lifetime disability with varying rehabilitation needs over that lifetime.
Beyond the traditional medical approach, TBI rehabilitation also includes supported living programs, independent living centers, clubhouse programs, rehabilitation within schools, and vocational rehabilitation. These resources include social and educational activities broadly defined.
Access to traditional rehabilitation resources is limited for several reasons.
There is a wide discrepancy in the availability of TBI rehabilitation programs across geographic regions and a lack of knowledgeable professionals able to facilitate community-based rehabilitation. Frequently, there are problems accessing rehabilitation services in a timely manner, and major financial barriers make access to TBI rehabilitation services difficult for many individuals.
…
An additional shortcoming of current approaches to TBI rehabilitation involves limited opportunities for decision-making by persons with TBI and their families. Traditional medical rehabilitation environments often do not foster partnerships with persons with TBI or their significant others. Therefore, the current approaches frequently result in a sense of disenfranchisement due to a lack of shared participation in goal development and program design. In addition, information provided by clinicians to persons with TBI and their families is often insufficient.
Recommendations
Some of the major conference recommendations included:
 | Rehabilitation programs for persons with moderate or severe TBI should be interdisciplinary and comprehensive. |
| Rehabilitation of persons with TBI should include cognitive and behavioral assessment and intervention. |
| Persons with TBI and their families should have the opportunity to play an integral role in the planning and design of their individualized rehabilitation programs and associated research endeavors. |
| Persons with TBI should have access to rehabilitation services through the entire course of recovery, which may last for many years after the injury. |
| Community-based, nonmedical services should be components of the extended care and rehabilitation available to persons with TBI. These include but are not necessarily limited to clubhouses for socialization; day programs and social skill development programs; supported living programs and independent living centers; supported employment programs; formal education programs at all levels; case manager programs to support practical life skill redevelopment and to help navigate through the public assistance and medical-rehabilitative care systems; and consumer, peer support programs. |
| Rehabilitation efforts should include modification of the individual's home, social, and work environments to enable fuller participation in all venues. |
Reference:
Rehabilitation of Persons with Traumatic Brain Injury,
National Institutes of Health, Consensus
Development Conference Statement,
October 26-28, 1998
Chapter 6. Medical Rehabilitation
Stories from the Path
Their team and your team
The rules
Things to Do Checklist
Constructing Your Team
Useful Publications
Useful Websites
Chapter
7. The Rehabilitation Hospital
Preparations for Discharge
Caregiver Responsibilities in the Transition
The Transition
from the Medical Model to the Educational Model
Coming to Grips with Dementia
The Functional approach to rehabilitation and recovery
Things to Do Checklist
Constructing Your Team
Useful Publications
Useful Websites
Chapter
8. New Realities
Cancellation: Insurance, Friends and family
Insurance papering, underwriter review, cancellation and non-payment
Look for love in all the right places
Who can help
Things to Do Checklist
Constructing Your Team
Useful Publications
Useful Websites
__________________________________________________________________
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__________________________________________________________________
Chapter 9
Money
THE VERY CAVE YOU ARE AFRAID TO
ENTER
TURNS OUT TO BE THE SOURCE OF WHAT YOU ARE LOOKING FOR
Developing new income sources
Getting Social Security Disability Insurance (SSDI)
Health Insurance
The social welfare net
Bankruptcy
Things to Do Checklist
Constructing Your Team
Useful Publications
The Consumer Reports Money Book: How to Get It, Save It, and Spend It Wisely
-- by Janet Bamford, Stacie Zoe Berg, Jeff Blyskal, Emily Card, and Aileen
Jacobson, with Greg Daugherty and the Editors of Consumer Reports
Making the Most of Your Money: Smart Ways to Create Wealth and Plan Your
Finances -- by Jane Bryant Quinn
Bottom Line's Very Shrewd Money Book: Your Personal Action Plan for Greater
Wealth -- by Barbara Weltman
The Bottom Line Money Book: How to Earn More...Keep More...and Invest More
Wisely -- by Bottom Line Books
Bottom Line's Big Fat Book of Free Money for Everyone -- by Matthew Lesko
Free Stuff for Seniors -- by Matthew Lesko
Unbelievably Good Deals and Great Adventures that You Absolutely Can't Get
Unless You're Over 50 -- by Joan Rattner Heilman
The Best Free Things in America -- by Linda & Bob Kalian
Free Money for Diseases of Aging: Thousands of Dollars for Treatment & Care are
Available for Treatment & Care are Available for Chronic Illnesses, Long-Term
Therapies, Nursing Homes, In-Home Care -- by Laurie Blum
The Bottom Line Book of Freebies -- by Bottom Line Books
Useful Websites
PART III. RECOVERY
Chapter 10
Medical Issues in Recovery
THE DAMNED THING IN THE CAVE THAT
WAS SO DREADED
HAS BECOME THE CENTER
Seizures
CSF shunt failure and infection
Hydrocephalus
Brain center damage
Stamina and physical condition
Blood condition and diet
Things to Do Checklist
Useful Publications
Making a Good Brain Great -- by Daniel G. Amen, M.D.
Paralysis Resource Guide -- by Sam Maddox (Christopher & Dana Reeve
Paralysis Resource Center)
After the Stroke -- by May Sarton
Love, Medicine & Miracles -- by Bernie S. Siegel, M.D.
Ageless Body, Timeless Mind -- by Deepak Chopra, M.D.
Phantoms in the Brain -- by V.S. Ramachandran, M.D., Ph.D., and Sandra
Blakeslee
My Own Medicine: A Doctor's Life as a Patient -- by Geoffrey Kurland, M.D.
Head First: The Biology of Hope and the Healing Power of the Human Spirit --
by Norman Cousins
Anatomy of an Illness as Perceived by the Patient: Reflections on Healing and
Regeneration -- by Norman Cousins
Change Your Brain, Change Your Life: The Breakthrough Program for Conquering
Anxiety, Depression, Obsessiveness, Anger, and Impulsiveness -- by Daniel G.
Amen, M.D.
Keep Your Brain Alive: 83 Neurobic Exercises to help Prevent Memory Loss and
Increase Mental Fitness -- by Lawrence C. Katz, Ph.D & Manning Rubin
Healing and the Mind -- by Bill Moyers
The Brain-Shaped Mind: What the Brain Can Tell Us about the Mind -- by Naomi
Goldblum
The Anxiety & Phobia Workbook: Simple, Concise, Step-by Step Directions for
Mastery of Relaxation, Exercise, Coping with Panic, Real-Life Desensitization,
Overcoming Negative Self-Talk, Changing Mistaken Beliefs, Visualization,
Expressing Feelings, Assertiveness, Self-Esteem, Nutrition, Medication (Third
Edition) -- by Edmund J. Bourne, Ph.D.
Healing from Depression: 12 Weeks to a Better Mood by Douglas Bloch, M.A.
Medical Tests that can Save Your Life: 21 Tests Your Doctor Won't
Order...Unless You Know to Ask -- by David Johnson, Ph.D., and David Sandmire,
M.D. with Daniel Klein
Bottom Line's Mind Boosting Secrets: Natural
Supplements that Enhannce Your Mind, Memory and Mood -- by Ray Sahelian, MD
Useful Websites
Chapter 11
Educational Initiatives
GETTING A COMEDIC VIEW OF YOUR
SITUATION
GIVES YOU SPIRITUAL DISTANCE
HAVING A SENSE OF HUMOR SAVES YOU
Developing the Recovery Partnership
New approaches to ABI therapy
Therapy and education
Identifying and selecting educational opportunities
Mainstreaming and independent living
Things to Do Checklist
Useful Publications
Useful Websites
Chapter 12
The Recovery Partnership
THE RETURN IS SEEING THE RADIANCE EVERYWHERE
Breaking the negative co-dependency cycle
Building positive reinforcement and self-esteem
Laughter and the human comedy
Functional definition of love
Please understand me
Things to Do Checklist
Useful Publications
Positive Thinking for a Time Like This -- by Norman Vincent Peale
Power of the Plus Factor -- by Norman Vincent Peale
Have a Great Day -- by Norman Vincent Peale
Positive Imaging -- by Norman Vincent Peale
Treasury of Joy and Enthusiasm -- by Norman Vincent Peale
Have a Great Day: A Thought for Each Day to Energize Your Spirit, Motivate Your
Mind, and Bring Joy to Your Heart -- by Norman Vincent Peale
The Celebration of Life: A Dialogue on Hope, Spirit, and the Immortality of the
Soul -- by Norman Cousins
The Path to Love: Siritual Strategies for Healing -- by Deepak Chopra
The Seven Spiritual Laws of Success: A Practical Guide to the Fulfillment of
Your Dreams -- by Deepak Chopra
Discovering the Power of Self-Hypnosis: A New Approach for Enabling Change and
Promoting Healing
Living with the End in Mind: A Practical Checklist for Living Life to the
Fullest by Embracing Your Mortality -- by Erin Tierney Kramp & Douglas H. Kramp
with Emily P. McKhann
The Be (Happy) Attitudes: Eight Positive Attitudes that can Transform Your Life
-- by Robert Schuller
Who Moved My Cheese: An A-Mazing Way to Deal with Change in Your Work and in
Your Life -- by Spencer Johnson, M.D.
What Happy People Know: How the New Science of Happiness Can Change Your Life
for the Better -- by Dan Baker, Ph.D. and Cameron Stauth
Laugh for no Reason -- by Dr. Madan
Kataria
Laughter Therapy: How to Laugh About Everything in Your Life That Isn't
Really Funny -- by Annette Goodheart, Ph.D.
The Healing Power of Humor: Techniques for Getting through Loss, Setbacks,
Upsets, Disappointments, Difficulties, Trials, Tribulations, and All That
Not-So-Funny Stuff -- by Allen Klein
Laughter: A Scientific Investigation -- by Robert R. Provine
Please Understand Me: Character & Temperament Types -- David Keirsey & Marilyn Bates
Type Talk: or How to Determine Your
Personality Type and Change Your Life -- by Otto Kroeger and Janet M. Thuesen
Useful Websites
Chapter 13. ABI Disorders and Learning Disability
YOU MUST RETURN WITH THE BLISS AND INTEGRATE IT
Educational assessment of ABI-related learning disability
Definitions of disability: DSM
Assessment instruments and methods
Legislation establishing educational resources for ABI recovery
Legal rights of those with ABI-LD
Things to Do Checklist
Useful Publications
Useful Websites
Chapter 14. Home Schooling
AS YOU GO THE WAY OF LIFE
YOU WILL SEE A GREAT CHASM
JUMP
IT IS NOT AS WIDE AS YOU THINK
Homegrown initiatives
Public programs and resources
Things to Do Checklist
Useful Publications
Useful Websites
Chapter 15. Mainstreaming and Independent Living
AS YOU PROCEED THROUGH LIFE
FOLLOWING YOUR OWN PATH
BIRDS WILL SHIT ON YOU
DON'T BOTHER TO BRUSH IT OFF
Projecting a 10-15-year plan
Making mainstreaming possible
Making independence work
Things to Do Checklist
Useful Publications
Choosing Simplicity: Real People Finding Peace and Fulfillment in a Complex
World -- by Linda Breen Pierce
Chapter 16. Living in the land of love and delight
WE ARE NOT THERE UNTIL WE CAN SAY
"YEA" TO IT ALL
Necessary elements for love and delight
Environment of the land of love and delight
Personal relationships
Looking back on the Hero's Journey
Things to Do Checklist
Useful Publications
The Hero with a Thousand Faces -- by Joseph Campbell
Myths to Live by: How We Re-create Ancient Legends in Our Daily Lives to Release
human Potential -- by Joseph Campbell
The Power of Myth -- by Joseph Campbell with Bill Moyers
In Quest of the Hero: The Myth of the Birth of the Hero, by Otto Rank; The Hero:
a Study in Tradition, Myth, and Drama, Part II, by Lord Raglan; The Hero Pattern
and the Life of Jesus, by Alan Dundes
Awakening the Heroes Within: Twelve Archetypes to Help Us Find Ourselves and
Transform Our World -- by Carol S. Pearson
The Hero Within -- by Carol S. Pearson
Archetypal Psychology: A Brief Account -- by James Hillman
The Hero's Journey: A Guide to Literature and Life - by Reg Harris and Susan
Thompson
Useful Websites
Epilogue
FOLLOW YOUR BLISS
Honoring the memory of Joseph Campbell
Our Labyrinth of Self-Discovery and Recovery honors the memory of Joseph Campbell, his vast contributions to intellectual history and especially his incisive study, The Hero with a Thousand Faces which is the basis for our Labyrinth. Quotations from Joseph Campbell used in The Labyrinth of Self-Discovery and Recovery are taken from Reflections on the Art of Living, edited by Diane K. Osbon. To learn more about Joseph Campbell, check www.jcf.org, the website of the Joseph Campbell Foundation.
All of the paintings used in the labyrinth are by Barbara Snyder, an American painter of visionary landscapes. Artist's prints of her paintings are for sale in the Catalog.