My Journey Back:
Many of you know that I will be climbing Mt. Kilimanjaro in February 2012. This has been a dream/goal of mine since 1989 when I was in Africa and first saw the mountain.
My life changed dramatically two years later when I was diagnosed with Chronic Fatigue Immune Dysfunction. Many of you may not know of the struggles I endured to recover from the illness and to adjust my life and attitudes. The day we reach the 19,341 ft summit will be the 20 year anniversary, almost to the day, that I learned I had a chronic illness and was told the research couldn’t determine what my recovery might be.
After having to leave my job at Hewlett Packard and return to my parents home from living in Europe, spending 3 years using a wheel chair, and fighting a humiliating ordeal for eligibility for Social Security disability benefits, I slowly began to reclaim my life.
The doctors couldn’t tell me if I would recover, so I was content on believing they also couldn’t tell me I wouldn’t recover. This photo was taken near Banff, Alberta in the Canadian Rockies. I got out of the wheelchair and took 90 minutes to climb this pile of rocks. Children and senior citizens were marching by me as I persisted and fought the leg pain and fatigue. That was 1994.
This trek will be a great physical challenge but also a mental challenge. It will restore my confidence that my health is intact.
Throughout my years of illness, I struggled to find information and support groups. The stigma associated with a silly name like “chronic fatigue” has deterred research. Most support groups are led by sufferers who not only experience fatigue but also severe cognitive symptoms.
With some digging, I was able to find an active and thriving society devoted to helping people with Chronic Fatigue and helping fund research into the illness. I am raising money for the Vermont Chronic Fatigue Immune Dysfunction Syndrome Association, a non-profit group. (www.vtcfids.org)
My goal is to raise $5000 which will help fund a medical scholarship and continued suport of the website which helps connect the community.
Here's a message from the VTCFIDS Association President:
We would use your gift to continue and expand our educational programs. The VT CFIDS Association supports a four-pronged CFS educational program which we believe is the most comprehensive in the United States:
1.) The Medical Scholarship Program, http://www.vtcfids.org/cfs_scholarship.html
The VT CFIDS Association has established a medical student scholarship program to educate medical students about Chronic Fatigue Syndrome. We have sources to provide matching funds so that donations can be doubled. The medical student who writes the best essay, as determined by a judging committee, receives a remission on their second year of medical school tuition.
2.) General Public Education. We tour with our documentary film “INVISIBLE” followed by questions and answers. We offer this film at reduced costs to individuals and other CFIDS organizations for the the same purpose. Beyond Vermont, this has been done in Florida, Utah, New Jersey, Wisconsin, Massachusetts, Virginia, New York and throughout Ireland. VT CFIDS members said they have used the film to improve the attitudes of unsympathetic family members. True healing begins at home.
3.) Physician Education. The VT CFIDS Association has commenced a program of providing in-hospital Grand Rounds in the State of Vermont. Board member, Dr. Kenneth Friedman, who delivered continuing medical education courses on the subject of CFS for the Centers for Disease Control and Prevention (CDC) has developed a new course based upon the content of the soon-to-be-released Physicians’ Primer being authored by the International Association For Chronic Fatigue Syndrome/ME. The program has been accredited by the University of Vermont for both medical and nursing continuing education credits. With increased funding, Dr. Friedman will be able to deliver physician education programs throughout the state, and beyond.
4.) Patient Education. The VT CFIDS Association maintains a website, as a resource center. http://www.vtcfids.org
Site analytics tell us that we have thousands of visitors, who spend considerable time, from all over the world. While we serve Vermont we are truly International in scope.
Persons debilitated by CFS lose sight of once active lives, lose hope with recurrent professional dismissals and lose faith with lost friendships and loves.
If you didn’t know about my illness, and have questions, I am open to talking about it. If you know someone else who suffers from CFIDS, this is a way to show support.
My Journey Back refers to my return to Africa and my return to health.
I’ll be carrying a banner to Kilimanjaro’s summit with the names of my supporters and fellow suffers. My goal is to fill the space.