When you are looking for something to take your mind of not feeling well, write a limerick. Here is an example to remind you of the rhyming. Of course, there’s always that man from Nantucket.
There once was a lady from Where
Who awoke to finding no hair.
"Oh my," she exclaimed, "I don't look the same.
Who knew my head was shaped like a pear!”
Wednesday, August 19, 2009
Sunday, August 16, 2009
Breathe
Breathe! One of the first things we do when we are stressed is limit our breathing. Overtime, our breathing becomes worse, as we tend to breathe only using the middle and upper parts of the lungs. Watch a baby and see how their belly rises and falls with each breathe. This is not how we were meant to breathe. Take a cue from these little ones.
You can check to see what type of breather you are by lying down with a book, or your hand, on your stomach. Does it rise and fall with each breathe?
Take time throughout the day and notice where you are drawing your breathes from. Make time for “belly breathes” in order to reduce stress and increase well being. The next time you are sitting in the doctor’s office waiting for test results, just concentrate on breathing from your belly. Inhale, using you belly, for four counts, hold for four, and release for four. Periodically check in with your body. Is your jaw tight? Are you trying to hold in your gut to look thinner? Stop and “belly breath.”
You can check to see what type of breather you are by lying down with a book, or your hand, on your stomach. Does it rise and fall with each breathe?
Take time throughout the day and notice where you are drawing your breathes from. Make time for “belly breathes” in order to reduce stress and increase well being. The next time you are sitting in the doctor’s office waiting for test results, just concentrate on breathing from your belly. Inhale, using you belly, for four counts, hold for four, and release for four. Periodically check in with your body. Is your jaw tight? Are you trying to hold in your gut to look thinner? Stop and “belly breath.”
Saturday, August 15, 2009
Blame, Complain and Feeling Sorry for Yourself are not productive
There’s little benefit in blaming yourself or others for your present situation. Blame is a wasted emotion. I’ve sat through countless workshops where people blame and complain. At the end of the day, did it really change anything? In all the years I ran retreats and workshops, I never saw the blaming and bashing to be helpful. However, when spouses and partners were present, blaming became issue discussions and then positive changes occurred.
Regardless of how you came to be in your current situation, dwelling endlessly on why did I do this or that, or “how could I have been so stupid,” doesn’t change the present, let alone prepare for the future. You can’t go back and change things, so why spend good energy dwelling on it?
Dr. Jill Bolte Taylor, a Harvard based brain scientist, suffered a massive stroke in the left side of her brain and detailed the her experience, and how it has improved her quality of life in the book “My Stroke of Insight.” Millions have probably seen her 18 minute presentation for the TED Conference. If you haven't seen it, take the time to watch it and/or read the transcript.
One of Taylor's messages is that the brain is basically circuitry. There is an approximately 90 second chemical process that happens in the body when you have a strong emotional reaction-be it joyful or negative. “When you stay stuck in an emotional response, you’re choosing it by choosing to continue thinking the same thoughts that retrigger it. We have this incredible ability in our minds to replay but as soon as you replay, you’re not here, you’re not in the present moment. You’re still back in something else and if you continue to replay the exact same line and loop, then you have a predictable result. You can continue to make yourself mad all day and the more you obsess over whatever it is, the more you run that loop, then the more that loop gets energy of it’s own to manifest itself with minimal amounts of thought, so it will then start on automatic. And it keeps reminding you, “Oh yeah, I was mad, I have to rethink that thought.”
Taylor also noted I’m so clear that my brain chatter is a tiny group of cells that perform a magnificent function and I have a say in whether or not that circuitry runs. So all I have to do is make the decision that in this moment, I’m not going to think those thoughts. I’m not going to run that particular circuitry, and I’m going to focus my mind on the bigger picture and think about other things and block those clouds from being there.”
One of the mantras in patient care is, “start where the patient is at.” In essence accept where things are and work from there. If your car has a flat tire and can’t be driven, denying the situation, talking endlessly about why you got the flat or blaming another driver for causing the accident, isn’t going to get you on the road anytime soon. In fact, it’s going to probably make it a lot worse.
Our most current prolific speaker on the topic of acceptance is Eckart Tolle, who writes “for now, this is what this situation requires me to do, and so I do it willingly.” It is a lot better to work in tandem with your abilities and treatments then constantly being at odds with them.
Spending time trying to compare the woes of your life with other people is a waste of energy. Every one has “something” to deal with. This is your something.
In the 90s, while Director of Twin States Women’s Network (TSWN), a non profit organization for women and families affected by HIV/AIDS and/or hepatitis, one of our HIV+ peer counselors was facing a nasty legal situation. While many of us thought the charges were unfair, the woman had to deal with the consequences. After her sentencing, she remarked how rotten she felt. She then added, “If I’m still on the ‘pity pot’ tomorrow, kick me off.” It was this attitude of acceptance that has propelled her to be helpful to the women she counseled, as well as have a very remarkable and healthy life.
Regardless of how you came to be in your current situation, dwelling endlessly on why did I do this or that, or “how could I have been so stupid,” doesn’t change the present, let alone prepare for the future. You can’t go back and change things, so why spend good energy dwelling on it?
Dr. Jill Bolte Taylor, a Harvard based brain scientist, suffered a massive stroke in the left side of her brain and detailed the her experience, and how it has improved her quality of life in the book “My Stroke of Insight.” Millions have probably seen her 18 minute presentation for the TED Conference. If you haven't seen it, take the time to watch it and/or read the transcript.
One of Taylor's messages is that the brain is basically circuitry. There is an approximately 90 second chemical process that happens in the body when you have a strong emotional reaction-be it joyful or negative. “When you stay stuck in an emotional response, you’re choosing it by choosing to continue thinking the same thoughts that retrigger it. We have this incredible ability in our minds to replay but as soon as you replay, you’re not here, you’re not in the present moment. You’re still back in something else and if you continue to replay the exact same line and loop, then you have a predictable result. You can continue to make yourself mad all day and the more you obsess over whatever it is, the more you run that loop, then the more that loop gets energy of it’s own to manifest itself with minimal amounts of thought, so it will then start on automatic. And it keeps reminding you, “Oh yeah, I was mad, I have to rethink that thought.”
Taylor also noted I’m so clear that my brain chatter is a tiny group of cells that perform a magnificent function and I have a say in whether or not that circuitry runs. So all I have to do is make the decision that in this moment, I’m not going to think those thoughts. I’m not going to run that particular circuitry, and I’m going to focus my mind on the bigger picture and think about other things and block those clouds from being there.”
One of the mantras in patient care is, “start where the patient is at.” In essence accept where things are and work from there. If your car has a flat tire and can’t be driven, denying the situation, talking endlessly about why you got the flat or blaming another driver for causing the accident, isn’t going to get you on the road anytime soon. In fact, it’s going to probably make it a lot worse.
Our most current prolific speaker on the topic of acceptance is Eckart Tolle, who writes “for now, this is what this situation requires me to do, and so I do it willingly.” It is a lot better to work in tandem with your abilities and treatments then constantly being at odds with them.
Spending time trying to compare the woes of your life with other people is a waste of energy. Every one has “something” to deal with. This is your something.
In the 90s, while Director of Twin States Women’s Network (TSWN), a non profit organization for women and families affected by HIV/AIDS and/or hepatitis, one of our HIV+ peer counselors was facing a nasty legal situation. While many of us thought the charges were unfair, the woman had to deal with the consequences. After her sentencing, she remarked how rotten she felt. She then added, “If I’m still on the ‘pity pot’ tomorrow, kick me off.” It was this attitude of acceptance that has propelled her to be helpful to the women she counseled, as well as have a very remarkable and healthy life.
Wednesday, August 12, 2009
Take a Break: Art of the Game
Several years ago, I completed a book I had started 20 years before when I was pregnant with my oldest son. Horrible morning sickness, that lasted most of the day for the better part of nine months, put me on a quest to think of things to divert my mind from how sick I felt. Ultimately, this led to "One Hundred Things to Think About and Do When You are Sick of Being Sick." On Wednesdays I will post some of the items from this book, as well as some of the activities I use in my "Art for the Sake of Health" workshops.
Listed below are free on-line resources that help to hone your gaming skills, provide some relaxation and stimulate your mind.
- AARP Game Page www.aarpmagazine.org/games (includes daily Sudoku, crossword and jigsaw puzzles, as well as solitaire, trivia and brainteasers). The site is free and you do not have to be a member to use it.
- Word Plays www.wordplays.com Includes several forms of Boogle, Scrabble and many other word games, along with a help section for cross word puzzlers.
- MiniClips www.miniclips.com Remember Pac Man? Now you can play it on-line along with many other games, including Trivia.
Listed below are free on-line resources that help to hone your gaming skills, provide some relaxation and stimulate your mind.
- AARP Game Page www.aarpmagazine.org/games (includes daily Sudoku, crossword and jigsaw puzzles, as well as solitaire, trivia and brainteasers). The site is free and you do not have to be a member to use it.
- Word Plays www.wordplays.com Includes several forms of Boogle, Scrabble and many other word games, along with a help section for cross word puzzlers.
- MiniClips www.miniclips.com Remember Pac Man? Now you can play it on-line along with many other games, including Trivia.
Sunday, August 9, 2009
Grieving, Feeling Powerless
Grieving is part of the process: Elizabeth Kubler-Ross may be best noted for her five stages of grief: denial, anger, bargaining, depression and acceptance. While these stages are often thought of in terms of people dying, that can apply to just about any situation where one feels they have no control over the situation. It could be as simple as your favorite hair stylist of 15 years retiring or as serious as being diagnosed with a terminal disease.
There is no set order for these emotions to take place. Not everyone experiences all of them. Maybe most confusing, you may think you’ve dealt with your anger and are now more accepting of the situation, only to find yourself really angry the next day.
Fear is another emotion that comes into play and is often the underlying factor as to why we become angry, depressed or as I prefer to think, “this can’t be happening to me!” (Denial). Fear can make us feel alone so that we withdraw and isolate ourselves. It can cause us to strike out and say hurtful things to people we love.
Feeling powerless in the face of illness is common. It is easy to define yourself by what you can no longer do and how you appear. You may feel that you have been robbed of everything that makes life worth living. Yet, great things can be achieved by connecting with your inner self and starting the healing from the inside out.
In the early years of the AIDS epidemic, you would learn of someone with the diagnosis and your heart sank because you knew there just weren’t a lot of treatment options. Interestingly, one women saw this very differently. She was very clear that AIDS had saved her life.
Prior to her diagnosis, her life was in a constant state of turmoil because of drug addiction. Once she was diagnosed, it shocked her into treatment and she began helping other women and families with AIDS. When someone commented how sad it was that she had AIDS, she replied, “If it wasn’t for AIDS I’d be dead. I know I wont have a long life, but thanks to AIDS I actually have a life.”
This is just as true for caregivers. When I started working in brain injury, a mother of a brain injured 20 year old told me that she hated to say this but, “our life is much better because of her head injury.” Mom became involved in an organization, which greatly benefited from her extensive abilities, and provided a much needed outlet for her creativity and energy. It also forced her to examine a marriage that wasn’t working. While separating in the months after their daughters injury, she and her husband did reunite, having worked on various issues that had plagued their past relationship.
There is no set order for these emotions to take place. Not everyone experiences all of them. Maybe most confusing, you may think you’ve dealt with your anger and are now more accepting of the situation, only to find yourself really angry the next day.
Fear is another emotion that comes into play and is often the underlying factor as to why we become angry, depressed or as I prefer to think, “this can’t be happening to me!” (Denial). Fear can make us feel alone so that we withdraw and isolate ourselves. It can cause us to strike out and say hurtful things to people we love.
Feeling powerless in the face of illness is common. It is easy to define yourself by what you can no longer do and how you appear. You may feel that you have been robbed of everything that makes life worth living. Yet, great things can be achieved by connecting with your inner self and starting the healing from the inside out.
In the early years of the AIDS epidemic, you would learn of someone with the diagnosis and your heart sank because you knew there just weren’t a lot of treatment options. Interestingly, one women saw this very differently. She was very clear that AIDS had saved her life.
Prior to her diagnosis, her life was in a constant state of turmoil because of drug addiction. Once she was diagnosed, it shocked her into treatment and she began helping other women and families with AIDS. When someone commented how sad it was that she had AIDS, she replied, “If it wasn’t for AIDS I’d be dead. I know I wont have a long life, but thanks to AIDS I actually have a life.”
This is just as true for caregivers. When I started working in brain injury, a mother of a brain injured 20 year old told me that she hated to say this but, “our life is much better because of her head injury.” Mom became involved in an organization, which greatly benefited from her extensive abilities, and provided a much needed outlet for her creativity and energy. It also forced her to examine a marriage that wasn’t working. While separating in the months after their daughters injury, she and her husband did reunite, having worked on various issues that had plagued their past relationship.
Saturday, August 8, 2009
You are more than your diagnosis
Whether you are a caregiver or living with a chronic or life threatening condition, you are more than the diagnosis. Being a person living with cancer, depression, heart disease, Parkinson’s or whatever else is part of your experience but it should not be your sole identity. Ditto if you are a caregiver.
When I first started working in AIDS in 1985, the medical profession as well as the media referred to these patients as “victims.” Many of the gay men were quick to point out that they weren’t victims, rather they were “people living with AIDS” or PLWAs, which evolved to PWAs. A number of the docs, nurses and social workers made light of that, saying, “who are they kidding? They are dying of AIDS.” Interesting that this acronym, DOA, is the same as Dead on Arrival.
The PWA approach struck me as affirming and a lot more accurate . These men were far more than a diagnosis and they recognized that “living with” instead of “dying from” set a more positive place from which they could go about the business of healing. It didn’t mean they were going to “cure” themselves of AIDS, which of course many believed. Instead, it created a more empowering place from which to live.
Healing is often viewed as an interchangeable term for cure. However, we are all mortal and therefore are never cured from death. Consequently, I choose to use the word “healing” in much the same way as others might use the term well being. Essentially, through the art of healing we live our most fulfilled life regardless of how we may appear or sound, or the number of days, months or years we are here. It is our inner core, spirit, soul, or whatever expression you wish to use, that truly defines us as a whole being.
When I first started working in AIDS in 1985, the medical profession as well as the media referred to these patients as “victims.” Many of the gay men were quick to point out that they weren’t victims, rather they were “people living with AIDS” or PLWAs, which evolved to PWAs. A number of the docs, nurses and social workers made light of that, saying, “who are they kidding? They are dying of AIDS.” Interesting that this acronym, DOA, is the same as Dead on Arrival.
The PWA approach struck me as affirming and a lot more accurate . These men were far more than a diagnosis and they recognized that “living with” instead of “dying from” set a more positive place from which they could go about the business of healing. It didn’t mean they were going to “cure” themselves of AIDS, which of course many believed. Instead, it created a more empowering place from which to live.
Healing is often viewed as an interchangeable term for cure. However, we are all mortal and therefore are never cured from death. Consequently, I choose to use the word “healing” in much the same way as others might use the term well being. Essentially, through the art of healing we live our most fulfilled life regardless of how we may appear or sound, or the number of days, months or years we are here. It is our inner core, spirit, soul, or whatever expression you wish to use, that truly defines us as a whole being.
Thursday, August 6, 2009
Healing Soldiers Through Art
This morning, I read an article about how art is being used to heal soldiers. Called Combat Paper , the project teaches soldiers how to make paper from their uniforms, medals etc., which can then be used as a canvas to paint, draw, write or construct their experiences.
The story of the soldier, the Marine, the men and the women and the journeys within the military service in a time of war is the basis for this project. The goal is to utilize art as a means to help veterans reconcile their personal experiences as well as broaden the traditional narrative surrounding service, honor and the military culture.
Through papermaking workshops veterans use their uniforms worn in combat to create cathartic works of art. The uniforms are cut up, beat and formed into sheets of paper. Veterans use the transformative process of papermaking to reclaim their uniform as art and begin to embrace their experiences as a soldier in war.
The Combat Paper Project is based out of Green Door Studio in Burlington, VT and has traveled throughout the United States. This project is made possible by a multifaceted collaboration between artists, art collectors, academic institutions and combat veterans.
Through ongoing participation in the papermaking process, combat papermakers are attempting to progress from creating works specific to their military experiences to expressing a broader vision on militarism and society. The work reflects both the anger of the past and hope for the future. Through this collaboration between civilians and veterans, a much-needed conversation is generated regarding our responsibilities to the returned veteran and an understanding of the dehumanizing effects of warfare.
The story of the soldier, the Marine, the men and the women and the journeys within the military service in a time of war is the basis for this project. The goal is to utilize art as a means to help veterans reconcile their personal experiences as well as broaden the traditional narrative surrounding service, honor and the military culture.
Through papermaking workshops veterans use their uniforms worn in combat to create cathartic works of art. The uniforms are cut up, beat and formed into sheets of paper. Veterans use the transformative process of papermaking to reclaim their uniform as art and begin to embrace their experiences as a soldier in war.
The Combat Paper Project is based out of Green Door Studio in Burlington, VT and has traveled throughout the United States. This project is made possible by a multifaceted collaboration between artists, art collectors, academic institutions and combat veterans.
Through ongoing participation in the papermaking process, combat papermakers are attempting to progress from creating works specific to their military experiences to expressing a broader vision on militarism and society. The work reflects both the anger of the past and hope for the future. Through this collaboration between civilians and veterans, a much-needed conversation is generated regarding our responsibilities to the returned veteran and an understanding of the dehumanizing effects of warfare.
Wednesday, August 5, 2009
Take an Art Break
Take an Art Break: Five Ways to Take five
1. Color, paint or pencil a mandala. Download them for free at www.free-mandala.com,
http://www.coloringcastle.com/mandala_coloring_pages.html, www.junemoon.com/free.html
2. Make some abstract art at www.jacksonpollack.org
3. Put some music in your life. You can
- download free music (as long as it’s for personal use) at http://www.freeplaymusic.com
- enjoy music videos, clips and photos from Shockwave http://www.shockwave.com/musicandphotos.jsp
- play music related games at http://library.thinkquest.org/15413/
4. Draw upside down.
5. Make a paper flower. Cut tissue paper into rectangles of the same size. Using 4-6 tissue papers, accordion pleat the tissue paper working from the side. Wrap a pipe cleaner, or thin piece of wire, around the middle. Gently separate each layer, folding into the middle. You can substitute Kleenex in place of tissue paper.
Art and music are great ways to reduce stress and increase well-being.
1. Color, paint or pencil a mandala. Download them for free at www.free-mandala.com,
http://www.coloringcastle.com/mandala_coloring_pages.html, www.junemoon.com/free.html
2. Make some abstract art at www.jacksonpollack.org
3. Put some music in your life. You can
- download free music (as long as it’s for personal use) at http://www.freeplaymusic.com
- enjoy music videos, clips and photos from Shockwave http://www.shockwave.com/musicandphotos.jsp
- play music related games at http://library.thinkquest.org/15413/
4. Draw upside down.
5. Make a paper flower. Cut tissue paper into rectangles of the same size. Using 4-6 tissue papers, accordion pleat the tissue paper working from the side. Wrap a pipe cleaner, or thin piece of wire, around the middle. Gently separate each layer, folding into the middle. You can substitute Kleenex in place of tissue paper.
Art and music are great ways to reduce stress and increase well-being.
Sunday, August 2, 2009
Healing the Whole Person Handout
As part of my introduction, I mentioned the "Healing the Whole Person" handout I continue to work on. Here is the most current edition.
Healing the Whole Person
Whether you are a caregiver or living with a chronic or life threatening condition, you are more than the diagnosis. Feeling powerless in the face of illness is common. It is easy to define yourself by what you can no longer do and how you appear. You may feel that you have been robbed of everything that makes life worth living. Yet great things can be achieved by connecting with your inner self, identity, soul, spirit or whatever form you choose to call the core of who you are versus what you appear to be.
Keep in mind the following
• There’s no benefit in blaming yourself or others for your present situation
• You are doing the best you can and your best is more than good enough.
• Every one has “something” to deal with. This is your something.
• You can have feelings of being disconnected to yourself, family and friends. You may find yourself feeling extremely angry or sad. Be patient with yourself. If the feelings continue to persist for several weeks, or are interfering with your life, get professional help.
• Breathe.
Live in the moment: You only need to live one minute at a time. Think smaller rather than bigger.
Practice Happiness: The following 10 steps were developed as part of the BBC’s 2005 Documentary Making Slough Happy
• Plant something and nurture it
• Count your blessings - at least five - at the end of each day
• Take time to talk - have an hour-long conversation with a loved one each week
• Phone a friend whom you have not spoken to for a while and arrange to meet up
• Give yourself a treat every day and take the time to really enjoy it
• Have a good laugh at least once a day
• Get physical - exercise for half an hour three times a week
• Smile at and/or say hello to a stranger at least once each day
• Cut your TV viewing by half
• Spread some kindness - do a good turn for someone every day
I believe that the very purpose of life is to be happy. From the very core of our being, we desire contentment. Dali Lama
Develop or use your spirituality and/or faith: For some this may be a renewed faith in their religion for others it is an opportunity to find beliefs that provide comfort.
Don’t lose hope
Make achievable goals
Ask for Help
Keep a Journal: Write about feelings and thoughts.
Take an Art Break: Engaging in art activities can reduce stress and increase well being. You can play or listen to music, draw, paint, write a poem, dance, bake or work on a craft project. The sky’s the limit.
Meditate: Inhale through your nose to the count of four or more. Exhale slowly, with lips puckered, through your mouth for as long as you can. As you exhale, listen to the sounds you make. Do you notice a difference in how your face feels as you let go of the tension? Repeat as many times that are comfortable for you, keeping in mind the saying, “take 10 deep breaths.” You can also try meditation on-line by going to Google or You Tube and search the video section.
Manage Your Health
• Keep a health notebook
• Maintain healthy habits by:
- Eating well;
- Reducing sugar & caffeine in your diet;
- Regular exercise as health permits (consider yoga, Tai Chi and Qigong); and
- Getting sufficient sleep
• Keep medical appointments
• Join a support group to help yourself and so you can help others
• Recognize you are in charge of your health care and act accordingly
• Identify resources in your community that can help you get what you need
• Developing and maintaining good relationships with your health providers
Healing the Whole Person
Whether you are a caregiver or living with a chronic or life threatening condition, you are more than the diagnosis. Feeling powerless in the face of illness is common. It is easy to define yourself by what you can no longer do and how you appear. You may feel that you have been robbed of everything that makes life worth living. Yet great things can be achieved by connecting with your inner self, identity, soul, spirit or whatever form you choose to call the core of who you are versus what you appear to be.
Keep in mind the following
• There’s no benefit in blaming yourself or others for your present situation
• You are doing the best you can and your best is more than good enough.
• Every one has “something” to deal with. This is your something.
• You can have feelings of being disconnected to yourself, family and friends. You may find yourself feeling extremely angry or sad. Be patient with yourself. If the feelings continue to persist for several weeks, or are interfering with your life, get professional help.
• Breathe.
Live in the moment: You only need to live one minute at a time. Think smaller rather than bigger.
Practice Happiness: The following 10 steps were developed as part of the BBC’s 2005 Documentary Making Slough Happy
• Plant something and nurture it
• Count your blessings - at least five - at the end of each day
• Take time to talk - have an hour-long conversation with a loved one each week
• Phone a friend whom you have not spoken to for a while and arrange to meet up
• Give yourself a treat every day and take the time to really enjoy it
• Have a good laugh at least once a day
• Get physical - exercise for half an hour three times a week
• Smile at and/or say hello to a stranger at least once each day
• Cut your TV viewing by half
• Spread some kindness - do a good turn for someone every day
I believe that the very purpose of life is to be happy. From the very core of our being, we desire contentment. Dali Lama
Develop or use your spirituality and/or faith: For some this may be a renewed faith in their religion for others it is an opportunity to find beliefs that provide comfort.
Don’t lose hope
Make achievable goals
Ask for Help
Keep a Journal: Write about feelings and thoughts.
Take an Art Break: Engaging in art activities can reduce stress and increase well being. You can play or listen to music, draw, paint, write a poem, dance, bake or work on a craft project. The sky’s the limit.
Meditate: Inhale through your nose to the count of four or more. Exhale slowly, with lips puckered, through your mouth for as long as you can. As you exhale, listen to the sounds you make. Do you notice a difference in how your face feels as you let go of the tension? Repeat as many times that are comfortable for you, keeping in mind the saying, “take 10 deep breaths.” You can also try meditation on-line by going to Google or You Tube and search the video section.
Manage Your Health
• Keep a health notebook
• Maintain healthy habits by:
- Eating well;
- Reducing sugar & caffeine in your diet;
- Regular exercise as health permits (consider yoga, Tai Chi and Qigong); and
- Getting sufficient sleep
• Keep medical appointments
• Join a support group to help yourself and so you can help others
• Recognize you are in charge of your health care and act accordingly
• Identify resources in your community that can help you get what you need
• Developing and maintaining good relationships with your health providers
Saturday, August 1, 2009
Introduction: The Non Authority
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.
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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