It is probably not wise to start a book or blog by saying, “ I’m not an authority on the subject you are about to read.” Yet, this is an important point because when it comes to healing and well being; you are the best authority on you. No matter how helpful I think something might be, if it doesn’t work for you, it doesn’t work for you. No more and no less. No need to say “I really tried but…”
So how did I become a “non authority?” My academic background is in experimental psychology (the rat people) and epidemiology (the study of disease), while my work experience has been in health research, planning, organizing and other ancillary forms of health care. Since I’m more about play, the best parts of me were forged in the Old Time music scene, (clogger and guitar player), as well as over a Mahjong table, and working on various projects for my community.
Thinking I wanted to spend my career in experimental psychology, particularly in the areas of evolution and animal behavior, life events dictated other wise, particularly when I went to work for the Maryland Institute of Emergency Medical Services. While developing rehabilitation programs for those with spinal cord and head injuries, I worked a great deal with people whose lives had been altered forever by injury, whether they were the patient, friend, family or caregiver. It quickly became apparent that these people had a variety of significant issues not being addressed by the medical or social service systems.
As eye opening as this experience was, it was my next job as a planner for the University of Maryland Medical Center, when the AIDS epidemic began, that was most transforming. Everything changed, not just my own career path, but also how medicine was and is practiced in the US. These changes included everything from the fast track approach for compassionate use of medications by the Food and Drug Administration (FDA) to government policies (HIPA) regarding confidentiality. While some may view the latter as a vast improvement, for those of us who worked so hard to get services for patients, it created a nightmare.
Falling in love led me to Vermont where I ended up being the co-founder and ultimately director of Twin State’s Women’s Network, a non-profit organization for women and families affected by HIV and hepatitis, which morphed into Twin State’s Network. Since I was working more and more with people who had many different conditions, ultimately I was co-founder of Chronic Conditions Information Network of VT and NH (CCIN).
At this stage of my career, I have worked with people with many different diagnoses, including motion disorders, such as Parkinson’s Disease, Multiple Sclerosis, many different types of cancer, obviously HIV/AIDS and hepatitis, and diseases I had never heard of until I met someone with the diagnosis. Regardless of the various nuances of a particular condition, people have similar issues including:
• When society perceives a person to have a life threatening condition, the person is feared regardless of diagnosis.
• Those whose conditions make them look different, such as a person with Parkinson’s disease who has tremors and/or drooling issue, are avoided.
• Patients need to make choices and decisions every day. It’s their right to do so. They are also responsible for the outcomes of their choices. This point seems to be lost by patients, providers and caregivers.
• Many people want to live as they once were, or how they thought they lived, and find it difficult to embrace how they are at this time.
• Our health care system, which can work miracles to extend life, doesn’t have the time or tools to help people live in a meaningful and affirming manner.
This last point is not a condemnation of the health care or social services system. We are
in a new era of living and being. In 1908, the leading causes of death were primarily
infectious diseases (Pneumonia and influenza, Tuberculosis and Diarrhea where the
leading causes of death), where people died quickly. With an average life expectancy of
47, you went to the doctor and got better or died.
Today’s leading cause of death, shows a major shift. What was once the fourth leading
cause of death, heart disease, is now number one. Cancer, which did not appear on the
five leading causes of death in 1908, is ranked number 2 and is expected to be number one
in the not too distant future. Life expectancy has increased to almost 80
years for Americans (average for both sexes is 77.7 years).
Most people will live for years with a diagnosis before it claims their life. Diseases that
were so identifiable with death, particularly cancer and AIDS, are now becoming chronic
in nature. Not curable, there are effective treatments that will allow people to live for
many years.
This is a significant shift and the medical profession is trying to adjust. There are any number of meetings and conferences on chronic disease, with a growing confusion between doctors and patients. Chronic disease patients and their families are being asked to be in charge of their health care and the decision making that entails. While many providers are relieved to leave the decision-making and day-to-day management to the patient, and their caregiver, there is still a frustration for patient and provider. The provider doesn’t necessarily like to be challenged, particularly when a patient comes in armed with volumes of information they’ve pulled off the internet, while, the patient and their family can be overwhelmed with the multitude and complexity of decisions that they need to make. In short, neither group has adjusted to the major changes that have occurred in health care over the last 100 years.
In the fall of 2007, I was caught in a house fire. Like the major events of life, time is forever measured before and after the fire. In the “after “ phase, it finally sunk home that maybe the most useful thing I could do with my experience is to help those affected by chronic conditions find a sense of self or well being, which is so often compromised because of sickness or injury.
If you were to come to me today, I’d give you a very simple, not quite two page, handout, which provides a laundry list of things to think about and do. This blog is essentially an expansion of that handout.
The people I work with, as well as my own day-to-day experiences, cause me to amend this handout every couple of months. It will always be a work in progress, which is one of the big advantages of a blog or website-I can update it on a regular basis. However, the primary points have remained pretty consistent over the years.
There are a variety of reasons why I chose to write a blog now. Maybe the most important is that I actually have a bit of time to write. However, there is a piece of this that’s a tribute to the many people whose lives have touched mine. While a number of them are dead, their stories should live on, possibly providing some new insights for you, as they have for me.
Several months ago, Gloria, who is 85 and is one of the most vivacious and upbeat people I know, talked about her life. She spoke of her son’s death as well as her mothers. It seemed to be a bit of surprise to her, that she could have gone through such difficulties and still view her life as both good and joyous.
One can experience catastrophic events and think they will never move through or beyond them. Yet, it might just be these events that move us to new ways of being, which create a more full life. One can have a very difficult life, but it can still be rich and wonderful.
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