PRESS RELEASES AND
PUBLISHED ARTICLES BY GORDON AND JANE CHAPMAN
PRESS RELEASE
THE 2006 DAY OF THE DEAD (DIA DE LOS MUERTOS)/CIRCLE OF LIFE FESTIVAL--November 1-4, 2006
Contact: Gordon Chapman
Phone: 410-810-0406, 410-708-2126
Email: janechapman@usa.net
Chestertown, MD—September 18, 2006--DAY OF THE DEAD/CIRCLE OF LIFE, a festival in celebration of intercultural traditions surrounding ancient practices, returns to the Prince Theatre and Wilmer Park Pavilion November 1-4. The 5th annual Chestertown festival recreates traditional celebrations of the day of the dead from Great Britain, Mexico, Japan, as well as ancient and New Age cultures. The dates of the Festival coincide with Chestertown’s First Friday celebration. It is also Down Rigging Weekend when the Sultana and other 18th century tall ships will be in Chestertown to commemorate the end of the sailing season.
For the past 4 years the Kent County Arts Council has sponsored DAY OF THE DEAD/SURVIVING THE LABYRINTH in conjunction with Brain Injury Recovery Self-Help, Inc. This is a multimedia event that celebrates the circle of life by honoring the memory of those who have gone before. This year the scope of the festival will be expanded to commemorate the 300th anniversary of the founding of Chestertown.
Dramatic community altars will be created by festival participants and featured artists and a Wall of Remembrance will be decorated with dedications to ancestors including, most recently, those who have died in the Iraq war and other acts of violence. The festival will also feature an extensive labyrinth, an art exhibit, workshops for decorating sugar skulls, music, an altar party, spirit boats and a bonfire by the river.
Visit Labyrinths in the Chestertown Area
The
labyrinth is the festival’s symbol for the circle of life. “Walking the
labyrinth” is found by many to be a profound experience. The labyrinth is a
metaphorical design found in ancient pre-historic as well as modern cultures.
The labyrinth design has a beginning, middle and end and represents life’s
journey or a pilgrimage. The beginning is stressful—after beginning the journey
one is challenged in the middle part with obstacles leading ultimately to
transformation. Having overcome the obstacles, one returns to their beginnings
but at a higher level of personal and spiritual development (wisdom).
Those who attend the show will have an opportunity to walk the festival’s labyrinth, to “kill the beast” at its center and, hopefully, experience transformation. The festival’s specially designed labyrinth is based on The Hero with a Thousand Faces by Joseph Campbell, whose work was the basis for the Star Wars films of George Lucas and on The Wizard of Oz by L. Frank Baum. The festival’s labyrinth will be installed in Wilmer Park Pavilion, centrally located in Chestertown.
A Labyrinth Tour will make other labyrinths located in the Chestertown area available for walking. Permanent landscaped outdoor labyrinths have been installed by churches and a local retirement facility as well as by individuals. A map showing their location will be provided at the festival.
Participate in the Dia de los Muertos/Circle of Life Celebration
Two specially designed Day of the Dead community
altars, one for children and one for adults, will be featured at the Prince
Theatre, located 210 High Street in Chestertown, along with a Wall of
Remembrance of individuals and pets for those who have died in the past year.
The traditional observance calls for departed children to be remembered November
1, the first day of the festivity (the Day of the Little Angels, "Día de los
Angelitos"), and for adults to be remembered on November 2.
School children will also construct individual altars in honor of loved ones who have died in the past year. Poetry by children will be included on a Wall of Remembrance which is another feature of the festival. Lighting of candles for deceased children (Angelitos) will take place at the children’s altar November 1 at 7 pm. Lighting of candles for deceased adults will be November 2 at 7 pm. Participants should bring disposable offerings for the community altar. In accord with tradition, after the spirits have partaken of the items placed on the community altar, the food will be shared in the reunion of life and death. This will be done at a Friday night party at Emmanuel Church Parish Hall. A final event on Saturday evening will be held on the bank of the Chester River, in Wilmer Park near the Pavilion Labyrinth. This celebration will include a bonfire with poetry readings and release of candle-lit Origami boats into the river to carry the spirits back home.
View an exhibition of visionary art
An
exhibit of work by artists will feature exploration of visionary art. This will
include participation by the Baltimore Museum of Visionary Art, Art Works,
Chestertown Art League and Old Kent Quilters as well as the work of students
from local schools and Washington College. The exhibit will be held Friday and
Saturday at the Emmanuel Church Parish Hall on Cross Street.
Dia de los Muertas workshops
Workshops will be held for children and adults on making and decorating sugar
skullls, personal altars, origami boats and ancestor portraits.
Calendar of Events for the Festival
Festival events will be located in Chestertown, Maryland, at the Prince Theatre,
a beautifully restored Art Deco era site at 210 High Street, Emmanuel Church
Parish Hall on Cross Street opposite Fountain Park, and at Wilmer Park Pavilion
on the Chester River. Altars will be installed at the Prince Theatre, an exhibit
of visionary art and Day of the Dead decorations will be at Emmanuel Church
Parish Hall, and the extraordinary Wilmer Park Pavilion will be the site of the
Festival Labyrinth.
Wednesday, November 1
Prince Theatre—4pm
Children’s day workshops and altar decoration
Workshops:
Make personal memorial altars
Decorate sugar skulls
Wilmer Park Pavilion: Walk the labyrinth—Daylight hours
Prince Theatre: concert and candle lighting including a memorial to child victims--7pm
Thursday,
November 2
Prince Theatre--4pm
Adult’s day Workshops and altar decoration:
Decorate sugar skulls
Make edible white chocolate skulls, soap skulls
Make Origami boats
Panel Discussions:
The meaning and design of the personal labyrinth
Joseph Campbell: The hero’s journey
Going to hell and back: the hero in literature
Wilmer Park Pavilion: Walk the labyrinth—Daylight hours
Prince Theatre: concert and candle lighting including a memorial to our fallen
military heroes and
Hurricane Katrina victims--7pm
Friday, November 3
Emmanuel Church Parish Hall
Exhibit of visionary Art—11am – 8pm
Day of the Dead Altar Party—(Los
arcos las ofrendas)
(After the beloved spirits have partaken of the items
placed on the altar, the food is shared with family and friends who have
converged on this occasion to share
in the reunion of life and death). Corresponds with Chestertown First
Friday celebration, 5pm-8pm.
Wilmer Park Pavilion: Walk the Labyrinth—Daylight hours
Saturday, November 4
Emmanuel Parish Hall 11am – 4pm
Exhibit of visionary Art—11am-4pm
Wilmer Park Pavilion
Walk the Labyrinth – Daylight hours
Bonfire by the river to burn 2006 regrets—Wilmer Park, 6pm-8pm
Poetry reading
Circle dancing
Release of the spirit boats
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PRESS RELEASE
July 11, 2005
For Immediate Release
Contact: Gordon Chapman
SELF HELP RECOVERY
BRAIN INJURY RECOVERY SELF HELP
PO Box 753
Chestertown MD 21620
410-810-0406
selfhelprecovery@usa.net
The Rebecca Jane, a new boat dubbed “the first modern handicapped accessible houseboat,” by its owners was launched on the Chester River June 29, 2005 from the Chestertown, Maryland, Marina. The builder-owners are Gordon and Jane Chapman of Chestertown Maryland. Designed as a “hotel suite on the water,” the 16’x 40’ boat is a modern version of a traditional houseboat.
Access is by a ramp directly through the boat’s front door. The interior of the boat is completely handicapped accessible and built on one level making it comfortable as well as spacious. Catamaran hulls make the boat extremely stable as well as provide space underneath for storing kayaks. Regarding the boat’s unique features, Gordon Chapman explained:
About 30 years ago I was a volunteer in a computer user group and worked with a man who had developed Multiple Sclerosis and was confined to a wheel chair. He had raced sailboats as a hobby and longed to find a handicapped accessible boat. We talked about design elements that would allow him to roll on and off in his motorized wheelchair. These discussions came back to me when I began designing a handicapped accessible boat for my wife, Jane, who is recovering from a head injury and has difficulty negotiating a standard boat.
The boat is also designed as a “green building.” Fully insulated, it takes advantage of passive solar heating and natural cooling with two sunrooms (that convert to screen rooms) attached to either end of a central utility module.
In part the boat was built as a research and demonstration project to encourage development of handicapped friendly boats with sustainable, environmentally friendly technology. The boat will undergo additional sea trials and testing for about one month and then will be available for rent on the Chester River beginning in August. In addition to regular rentals, the Rebecca Jane will be available to related nonprofit organizations at no charge other than operating costs.
The Chapman’s also offer Riverside Cottage, located in the Chestertown Historic District for short term rental. Income from rentals is used to support Self Help Recovery, which conducts research to identify free and affordable resources for long-term recovery from catastrophic illness. These self-help resources are listed on the organization’s website, www.SelfHelpRecovery.net together with information about aspects of successful long-term recovery. The rental properties are listed in Kent County Lodging listings and on www.kentcounty.com.
Building plans and technical assistance for building a handicapped accessible houseboat are available FREE from Self-Help Recovery. A previously published article about designing and building the Rebecca Jane can be found at www.SelfHelpRecovery.net. Anyone interested in examining the boat should contact the owner at the address given above.
The Rebecca Jane on the Chester River at Chestertown
Rebecca Jane interior
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HOW SUITE IT
IS
BUILDING THE REBECCA JANE: A MODERN HANDICAPPED ACCESSIBLE HOUSEBOAT
BASED ON TRADITIONAL DESIGNS
By Gordon Chapman
A few years ago my wife Jane, who has a disability, and I began looking at houseboats as a substitute for sailing. Little did we know then that we had started down a new road to unexpected but exciting destinations that would involve a “boat and breakfast” charter. We had cruised on the Chesapeake Bay for several seasons, following the advice found in William Shellenberger’s Cruising the Chesapeake: A Gunkholer’s Guide. Consequently, we spent many happy hours exploring the tidal rivers of the Eastern Shore, at least as much as was possible in a boat that draws 5 feet. As all Chesapeake Bay sailors know sailing out of a sandy bottom is a trick like pulling out of a skid on a slippery highway. It was after we were stranded for 3 days off Romancoke in a 26 ft day sailor during a hurricane in 1975, that we began looking for a less adventurous and more comfortable living-on-the-water experience. This led us to consider the houseboat alternatives which looked very pleasant in manufacturers’ brochures, a modest houseboat having as much usable space as a large sailboat.
However, we developed a
different opinion of houseboats after looking at them more closely in marinas
and boat shows. We found them to be as difficult to climb around as any other
boat. In addition, while they might be big on the outside, they were generally
small inside. Built-in cabinetry and dining nooks that could be turned into
beds reduced available interior space and deck space was often limited to narrow
walkways. What we really wanted, we decided half facetiously, was a hotel
suite on the water.
Contemporary houseboats
are most often powered by two inboard engines to allow for high speed cruising
and for towing water skiers (as shown in brochures). These engines and their
oversized fuel tanks increase the overall weight of the boat, while taking up
substantial space. With the hull full of holes to drain and flush engine
cooling water, big prop assemblies, and other gear necessary for the cruising
boat, it looked like lots of maintenance. The need for auxiliary equipment was
daunting as well, and we decided a cruising boat was definitely not the
experience we were looking for.
Increasingly, we asked ourselves what we wanted to do with a boat. We kept returning to memories of the pleasures we had experienced gunkholing. Our house in Chestertown is on the banks of the river just above the bridge giving us an exceptionally scenic view. This part of the Chester broadens out into a lake, but is relatively free of boat traffic. In its upper reaches, the river is bordered in part by thousands of acres of nature preserve. We decided that, given these natural amenities, living aboard could be very pleasant, and we began researching traditional houseboats from the 19th and early 20th centuries. These boats were designed for comfortable living on the water. It soon became apparent to us that for sheer poetry, nothing could beat the traditional houseboat. Russell Conder in his article Handmade Houseboats: Independent Living Afloat writes:
We advise every one that the beauties of nature are lost to them unless they try living on the water. A cottage in the country is monotonous compared with the ever-changing landscape of the water—there is beauty everywhere, the air is pure, the nights are cool, the mosquitoes do not bother you, and there is a restful tone of comfort and happiness about a houseboat which can be had in no other abode.
The traditional houseboat, in contrast with contemporary cruising houseboats, seldom had engines at all. If they needed to be moved they used the current, were towed or were propelled by sweep oars or poles. Before the turn of the last century there were great party boats permanently anchored at Henley and Oxford, England, as well as Lake Washington in Seattle and other places in the US. Of course, there were the famous houseboats of Kashmir used by the English Colonial powers to escape the summer heat of the south. And in Florida, Pierre Lorillard’s Caiman introduced upscale houseboating with a second boat for stables and carriages. After the Caiman burned, he built the Nirodha, which, at 125 feet and 137 tons, was powered by two 20 h.p. engines.
During WWII, houseboats were built to be used for worker or military housing in Florida, California and Maryland. After the war, ex GIs built houseboats from surplus military barges and used surplus worker houseboats left over after post-war industrial cutbacks. Later, permanent waterside communities developed like those found today in Sausalito, Seattle and Miami. Shantyboats are still used in the Louisiana Bayous by fishermen as they were used earlier on the Chester and other rivers of the Eastern Shore.
Other houseboats were made for drifting. Perhaps the most famous was built by Harlan Hubbard and his wife Anna in Brent, Ohio, in 1944. Their drifting voyage with summer layovers along the way, took them down the Ohio and Mississippi Rivers, finishing in New Orleans in 1950. Hubbard, who tells of their adventures in Shantyboat: A River Way of Life, Shantyboat on the Bayous, and other books, is considered to be a modern Henry David Thoreau.
Interpreting traditional houseboat features with contemporary methods, materials and equipment would be our main challenge. Since the traditional type of houseboat is unavailable from manufacturers, we began to design our own and over a period of 4 years became clearer about special features that we wanted: Pontoons to provide stability, an off-the-grid solar panel electric system, simple propulsion and control systems and features to facilitate easy access to the shore and water.
We designed the boat to be handicapped accessible, originally, because of Jane’s disability. But this also makes the boat less cluttered and more user friendly and comfortable, providing features that women especially appreciate. Simplicity is the key design principle and off-the shelf modular elements make the boat easier and less expensive to build and operate.
Low maintenance pontoons consist of 30” by 6’ sections joined together. We chose 40’ as the appropriate length to accommodate the hotel suite sized living space. Produced to be used to support floating docks and bridges, the pontoons are made of polyethylene filled with high density foam. The traditional houseboat would have used a barge or scow hull but pontoons have other features that make them more desirable, including doing away with bilge. The shallow draft pontoons allow the boat to be beached easily, a great advantage in a sandy bottomed tidal river.
Deck framing for our houseboat was designed by a naval architect and uses marine grade aluminum to provide for rigidity and high strength-to-weight. The deck is fiberglassed Medium Density Overly (MDO) plywood that is superior to marine plywood. The primary deck is 40’ x 15’, which provides for ample deck space and walkways. The top deck is 12’ x 15’.
The house is comprised of three modules. A central core module made of MDO fiberglassed to the deck meets the highest standards for strength and rigidity at low weight. The traditional method of construction would have used stick framing nailed and screwed together. The center module contains utilities and sleeping quarters. The front and back modules, assembled from pre-fabricated sun porch kits, provide dining and lounge areas. In addition to the sun porches, large sliding windows in the center module provide additional light and ventilation.
The dimensions of the house are about the same as a hotel suite and it is laid out approximately the same. However, there are few built-in features aside from a small kitchen and a large (for a boat) handicapped accessible bathroom. Chairs, tables and beds can be set up as needed or folded up and stored. This provides a large unobstructed space with areas that can be closed off for privacy.
Making the boat handicapped accessible came about originally because Jane’s disability would make it difficult for her to negotiate a standard houseboat. This makes our boat somewhat unique. We have not heard of any other boat of this size designed to be handicapped accessible. Boarding the boat is by means of a ramp. Onboard doors are 3’ wide, counters are wheelchair height and there are grab bars and other devices as well. A person in a wheelchair can board using the ramp and roll straight through the boat with no obstacles. Cushioned flooring is used inside the suite for comfort and safety.
The boat was built in Chestertown at the Williams Boatyard and is to be launched in August 2004 from the Chestertown Marina. After a shakedown and final fitting out, the boat will be available as a boat & breakfast or for longer periods as a charter, starting in September 2004. The boat is fully insulated and will operate on an extended season basis for fall foliage viewing and waterfowl bird watching in late fall and early spring.
Reprinted from Women's View, August/September 2004
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Handicapped Accessible Houseboat Plans
For those interested in designing and building a handicapped accessible houseboat, thank you for your interest. The following are some important initial recommendations and resources:
O Before beginning the actual design you should become familiar with ADA requirements for handicapped accessible and handicapped friendly vehicles and premises. You can learn about insurance concerns from Seaworthy: The BoatU.S. Marine Insurance and Damage Avoidance Report.
O You should also become familiar with standard houseboat models currently available from manufacturers. It is important to visit and inspect these boats and to make a list of desirable and undesirable features. (For example twin inboard engines take space and cost a lot to buy and are seldom used by most houseboat owners. In addition, they are more dangerous and difficult to maintain, create more vibration, among other things, than a four-stroke outboard.) Take an older and slightly impaired person with you when you visit a houseboat to get an idea of space and barrier issues that they would face. Don’t visit houseboats at boat shows as the glitz and pressures create confusion. Instead, look at older boats at marinas where you can inspect them at your leisure and see how they have worn in.
O Read about traditional boats as well as contemporary models to see the different ways they have been used. Check out cruising boats, especially multihulls, and the live-aboard lifestyle.
REFERENCES
Books
Handmade Houseboats by Russell Conder
Houseboat: Reflections of North America’s Floating Homes… History, Architecture, and Lifestyles. By Ben Dennis and Betsy Case
Shantyboat: A River Way of Life. By Harlan Hubbard
Shantyboat on the Bayous. By Harlan Hubbard
The
Chesapeake Bay of Yore: Mainly about the Rowing and Sailing
Craft. By Frederick Tilp
. . .
Magazines
BoatU.S.
Houseboat
Living Aboard Magazine
Passage Maker Magazine
Seaworthy
Waterways World
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LONG-TERM RECOVERY FROM CATASTROPHIC ILLNESS
By Gordon Chapman, Brain Injury Recovery Self Help, Inc
It is probably safe to say that for most people catastrophic illness comes without warning, usually when we are least prepared. In any case it was that way for us. On July 31, 1993, my wife, Jane, suffered a ruptured subarachnoid cerebral aneurysm, a catastrophic crisis from which fewer than 10 percent of victims survive. After several months of hospitalization beginning with several weeks in a coma in intensive care, she did survive and eventually was discharged in October.
During that period I began my apprenticeship as a “caregiver,” learning the requirements for patient advocacy as well as the details of hands-on personal care. I discovered, as most people do, that health insurance covers only a fraction of the costs involved in catastrophic illness, partly because the medical part of catastrophic illness constitutes only a fraction of the time and effort required for recovery. The greater part of recovery is not medically related.
Informal discussions as well as interviews that we have conducted with patients, caregivers and health care professionals during the past 11 years reveal unreasonable expectations about recovery from head injury. On the one hand there is the view that medical treatment will be followed by a brief period of speech, physical and occupational therapy after which the patient should be able to return to normal life. The alternate view is that the patient’s condition is considered hopeless. Neither view is correct, however. After a promising intake evaluation and only 10 days in the rehabilitation hospital, Jane’s neurologist rehabilitation team leader took the hopeless view and Jane was discharged the next day. This probably had less to do with the limitations of her condition than with insurance issues and underwriter review.
The fact is that long-term recovery begins in the Intensive Care Unit, but medical treatment is only the beginning of the long journey to recovery. We have found recovery from catastrophic illness to be life-changing for the caregiver as well as the patient. It is really a matter of surviving catastrophic illness and building a new life for both patient and caregiver. Often survivors will comment that their crisis led to transformative change and new opportunities, and this can be the case for caregivers as well. Becoming partners in Jane’s recovery strengthened our relationship and that led to development of new areas of interest and employment.
Jane was the co-founder of the Center for Women Policy Studies in Washington, DC, which, since 1972, had done important work on the legal and economic status of women. She was director of CWPS for over 20 years, following the consciousness raising efforts of the early 1970s. It was an effort that we worked on together, and we approached head injury recovery as a new, interesting, and critically important project.
Because recovery from head injury may last 10-15 years, it will profoundly alter the lives of patient and caregiver. Fortunately, recovery is measured over time by reduced dependency and increased capacity for independent living. For us it has also led to the formation of BIRSH and new research and writing about long-term recovery.
Given the mostly prohibitive cost of third-party pay health care and the length of time required for recovery from head injury and other catastrophic illness, patients and caregivers must look to self-help resources. The good news here is that long-term recovery is spontaneous and can be facilitated by education, training and assistive devices and methods that help compensate for diminished faculties. It is especially useful if the patient and caregiver can work together as partners in the recovery project. Since the patient is disabled and vulnerable it must be up to their caregiver-partner to find appropriate resources and facilitate the patient’s access to them.
The ultimate objective of the recovery effort is independent living. There are untold free and inexpensive resources to help caregivers and patients take control of their recovery if they know where to find them. Two of the most important resources for the recovery effort are caregiver resource centers and centers for independent living. These help the caregiver and patient locate and apply for assistance, develop and execute a recovery plan and focus their efforts on the goal of independent living.
Reprinted from The Eastern Shore Milestone: A Newspaper for the 50+ Community, Volume 2, Issue 11, November 2004.
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Long-Term Recovery from
Catastrophic Illness
Financial Recovery
By Gordon Chapman, Brain Injury Recovery Self Help, Inc
The idea of “making lemonade from lemons” applies to catastrophic illness as it does to other situations in life. Consider these lemons: Catastrophic illness occurring to a single person living alone in a rented apartment, working on a contract basis, paycheck-to-paycheck, with no health insurance and no savings. This has to be a worst case scenario. One could ask “what-if” questions of themselves under better circumstances and still worry.
Health insurance
It is trite but true that most health
insurance is not sickness insurance. Restrictions in coverage based on
pre-conditions and type of policy result in a flimsy safety net for most people,
especially for those not covered by group policies. Coverage is subject to
underwriter review and the insurance company reserves the right to refuse
payment or cancel coverage if specific requirements are not met. Most
treatment requires pre-certification by the company, but pre-certification does
not guarantee that payment will be made. The reams of notifications sent to
patients while they are in hospital may include requirements that, if not met,
may result in cancellation. Finally, the policy is cancelled after coverage
limits have been met and a new policy cannot be obtained once a pre-condition
has occurred.
For many reasons, Medicare/Medicaid is the best and most reasonably priced insurance. Medicare is available to individuals under the age of 65 who have suffered catastrophic illness and whose application for Social Security Disability Insurance has been accepted. After the age of 65, people with disabilities can also obtain Medigap.
Alternatives to Health
Insurance
The Veterans Administration Health
Care System is available to veterans. Once admitted into the system veterans
can receive comprehensive care including medication at low cost.
Federally designated hospitals, usually teaching hospitals (including Johns Hopkins) charge according to ability to pay for people with limited income or who have passed their insurance limit. Illness-based associations can help locate low-cost treatment alternatives. The National Institutes of Health and other research programs offer treatment including examinations and monitoring of conditions being studied in exchange for participation in clinical trials.
At-home care is ultimately the most important, given the continued demands of long-term recovery. After an extended period in the hospital and probably another period in a rehabilitation hospital, discharge can be like jumping from an airplane. There is the parachute, of course. It should open and, hopefully, you will land in a soft place. The need for continued care, monitoring and education of the patient by a caregiver/partner or by the patient alone requires developing expertise beginning as early as possible. Hiring a case manager to be part of your caregiver team can help enormously. This should also be done early on when the patient is still in the hospital.
Social Security
Disability Insurance (SSDI)
“SSDI pays benefits to you and certain
members of your family if you are ‘insured’ meaning that you worked long enough
and paid Social Security taxes” (http://www.socialsecurity.gov/disability/).
Application for SSDI should be initiated as soon as the attending physician can
determine the extent of disability. An application can be initiated by the
caregiver through a telephone interview with a Social Security case worker.
After the interview a formal written application is required with medical
records supporting the claim that the patient’s disability prevents his or her
return to work. Assistance with the application can be obtained at no cost
from a center for independent living or, for a fee, from a law firm specializing
in SSDI applications. Another program, SSI provides income to children and
individuals over 65 based on a means criteria.
Catastrophic illness is seen, initially, as a financial disaster for the whole family. In fact, financial benefits such as SSDI and services in kind tend to stabilize and maintain the economic viability of the patient. For more information, go to http://www.socialsecurity.gov/disability/.
Community resources
Local community centers can provide a
range of programs and services needed by both patient and caregiver that can
help to develop a strong partnership between them. Most of the activities of
the rehabilitation hospital and others not made available there due to liability
concerns can be found in the community at a fraction of the cost. Community
centers, caregiver resource centers, centers for independent living,
disability-friendly educational institutions and the like can provide a wide
range of resources from courses to supportive services. Go to
http://www.jik.com/ilcs.html for a directory of centers for independent
living.
Government programs
The best guides to state and Federal
government money are provided through the publications of Matthew Lesko, inc at
www.matthew-lesko.com.
Information about self help resources for recovery from brain injury and other catastrophic illness are available at www.selfhelprecovery.net.
Catastrophic illness is like
a tsunami the second wave of which is financial catastrophe. But there are
extensive resources available to support both patient and caregiver in the
recovery. Most can be located through the internet.
Reprinted from The Eastern Shore Milestone: A Newspaper for
the 50+ Community, Volume 3, Issue 3, March 2005.
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Long-Term
Recovery from Catastrophic Illness
Laughter
Therapy
By Gordon
Chapman, Brain Injury Recovery Self Help, Inc
Laugh and the world laughs with you; cry and you’re just miserable. You may not believe this but when you Google “laughter” on the internet you get more than 5 million entries. “Laughter therapy” gets you 430,000 and “laughter recovery” 92,000. Clearly there is a lot going on in this area that can benefit those recovering from catastrophic illness and their caregivers.
After my wife Jane’s operation to fix a burst subarachnoid cerebral aneurysm and more than a month in intensive care, she was moved to intermediate care and started on physical therapy. Her room had a television set mounted on a bracket near the ceiling. Although I declined cable access the hospital had a closed circuit information station that could be accessed on any set. One day we returned from physical therapy to find the television turned on and a surgical procedure in progress. It was a little shocking and I spontaneously remarked, “look Jane they’re showing your operation,” after which we both broke down laughing. I realized then that this could be an important avenue to Jane’s recovery and I began to feed her sense of humor with anything that would make her laugh. During her brief stay at the rehabilitation hospital we watched videotapes of comedies starting with What About Bob, a movie that also seemed appropriate to our circumstances.
In Anatomy of an Illness, Norman Cousins describes how, in the face of medical skepticism, he discovered the value of humor in his own recovery from major illness. This was in 1964 and the medical profession was skeptical about mind-body connections. Even so, Anatomy of an Illness became a best seller and stimulated research that led to findings reported in 1989 in the Journal of the American Medical Association, “A humor therapy program can improve the quality of life for patients with chronic problems. Laughter has an immediate symptom-relieving effect for these patients.”
In his 1989 book, Head First, Cousins reviews these and other findings in a chapter called “The Laughter Connection.” This book, which also became a best seller, was followed by additional scientific studies and development of the field of laughter therapy. Subsequently, it became recognized as an alternative (complementary) medicine that facilitates positive mind-body connections.
In 1995, Dr. Adnan Kataria started a laughter club as an extension of his practice in Mumbai India. This led to an international network of laughter clubs including a growing number in the US. The objective of the laughter club is to learn to laugh spontaneously. The approach used is based on contemporary medical research and Yoga breathing exercises (Hasya Yoga). Each laughter session starts with deep breathing and a Ho-Ho, Ha-Ha exercise. Being in a group stimulates laughter; similarly, a sense of humor can be acquired with practice (For further information visit http://www.laughteryoga.org).
Dr. Patch Adams became famous for his use of clowning to induce laughter in his patients. Fame came to him as the result of the 1998 movie staring Robin Williams. He has worked internationally with patients and doctors in more than 50 countries helping to establish hospital laughter therapy programs. He also established the Gusundheit! Institute in Washington DC in 1972 and published Gusundheit! a book about the mission of the institute, and Housecalls, a guidebook for creative Caregiving (For further information visit http://www.patchadams.org/home.htm).
Many hospitals have developed formal and informal laughter therapy programs creating opportunities for trained and volunteer humorists to work with patients and medical staff, emulating Dr. Adams. Where this has been tried the hospital environment has been found to become more positive and staff burnout has diminished. The same holds for the home setting.
Recovery from head injury and other catastrophic illness may take 10-15 years. Recovery means learning new skills and adaptation to new conditions. These are meaningful challenges that require a positive attitude and sense of humor. Based on the growing number of studies laughter contributes to improving health of both patients and caregivers.
During the past 10 years of her recovery Jane has developed a fine sense of humor and a sharp wit for which she has become well known. Her library includes the complete Dave Barry oeuvre as well as the Monty Python series and many others. She loves to learn new jokes but doesn’t mind retelling a good one over again such as this one that she learned several years ago: Q. Why don’t cannibals eat clowns? A. Because they taste funny! If that doesn’t break you up, look for a laughter club near you.
Reprinted from The Eastern Shore Milestone: A Newspaper for the 50+ Community, Volume 3, Issue 2, February 2005.
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LONG TERM RECOVERY FROM CATASTROPHIC ILLNESS
THE SPIRITUAL PERSPECTIVE
By Gordon Chapman, Brain Injury Recovery Self Help, Inc
The white light and all the other details found to be part of the near death experience are difficult to remember after an extended coma. However, this profound spiritual journey is reportedly part of catastrophic illness.
Jane remembers that in her month-long coma she recited her Social Security number over and over to herself. She felt that it was her last thread to life. She also remembers out of body flights with her father and she remembers that her mother was her guide during her crisis, staying with her until she was well out of the hospital. Both parents had died years earlier. After about a year into her recovery, the flights stopped and her mother left.
Having made a thorough eleven-year study of it, Jane and I refer to the difficult process of recovery as "surviving the labyrinth," a long, complex process that requires both skill and faith. It is also a spiritual journey for both recovering patient and their caregiver helpers. The labyrinth is an ancient and universal concept, prehistoric in origin, that may even be part of human instinct or genetic code. The design of our logo is the famous labyrinth of Crete which was ruled by the Minotaur until he was slain by Theseus. Theseus was able to find his way back out of the labyrinth by following a string that Ariadne had provided him. This also describes the brain injury recovery process; the string is education and training, caregiver helpers, or, perhaps, the brain’s own plasticity providing new neural pathways.
In The Hero with a Thousand Faces, Joseph Campbell described the hero’s journey as involving separation and return, very much like surviving the labyrinth. The hero’s journey is also an appropriate model for the recovery experience. We may all walk the hero’s path at various times throughout our lives, but never as dramatically as in catastrophic illness.
Initially catastrophic illness is a medical crisis, for example stroke. The separation referred to by Campbell is played out in the intensive care unit and may include a near death experience. Having survived the crisis, the hero is moved to intermediate care and there begins physical therapy. After a time the patient is discharged from the medical hospital and any further treatment will be received at home and through public and private programs.
In terms of Joseph Campbell’s model, the hero has entered a new phase of the adventure, the longest part of the journey. Recovery from head injury can take 10 to 15 years. Metaphorically, the hero is walking the labyrinth. Physiologically recovery involves plasticity and development of nerve pathways and connections. Most recovery from head injury is spontaneous. But effective, successful recovery requires facilitation by positive, supportive caregivers—in Campbell’s view, guides and helpers.
In Jungian terms, recovery involves individuation, a transformative development often referred to as overcoming a midlife crisis. The effect of transformation is similar to that of near death experience. Raymond Moody, who has made a through study of the subject, observed that many survivors feel that “their lives were broadened and deepened by their experience, that because of it they became more reflective and more concerned with ultimate philosophical issues.” This can be the case for caregivers as well, to the extent that they share in the profound experience of catastrophic illness and recovery.
Thus catastrophic illness includes a spiritual dimension. Surviving the labyrinth is the ultimate pilgrimage and affects the lives of both survivor and caregivers. The patient is a hero experiencing an incredible adventure whether or not others recognize it. In Joseph Campbell’s terms, caregivers are helpers on the hero’s path. Recovery involves transformation, or what Carl Jung referred to as “individuation.” Where one might expect greater self-absorption and fear, the capacity for compassion, what the Dalai Lama defines as “the wish that others be free of suffering,” becomes highly developed. This personal development can be experienced by both patient and caregivers. Caregiving also provides an opportunity for caregivers to learn compassion.
There are many examples that illustrate the spiritual dimension of catastrophic illness. Christopher Reeve fully shared the transformation that came about through his efforts to deal with his injury and paralysis. The poetry and life of Mattie Stepanek show that children have the same capacity for transformation as adults. The lives of these individuals and their caregivers have shown an expanding capacity for compassion, the highest goal of spiritual development.
Reprinted from The Eastern Shore Milestone: A Newspaper for the 50+ Community, Volume 2, Issue 12, December 2004.
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