Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, Healthcare, Living with Illness, overcoming adversity, Spirituality and Health, Storytelling

How Does It Feel to Be You Right Now?

We live in tumultuous times and it’s scary waking up every day with so much uncertainty in the world.  The truth is, even when things are in alignment politically, socially, and atmospherically, the person we are is always in the uncertainty zone.  How is that possible?

We’re complex beings physically, mentally, and spiritually.  If you look around your community, watch the news, or truly listen to the stories told by your friends and family you come to understand the depth of our complexity.  Unfortunately, along with complexity comes fragility, that sliver of vulnerability that exposes our human Achilles heel.

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My father called me a couple of days ago and opened our conversation with, “You know I’m at an age where a lot of people I know are dying.”  If nothing makes you vulnerable (at least in your own mind) mortality usually creates an emotional and spiritual gash in our armor.  It makes everything frighteningly real.  It exposes our imperfections while simultaneously accentuating our strengths.

We greet one another with the age-old question, “How are you?”  What are we really asking?  If you ask the question, are you prepared for the truth? I like the question “How does it feel to be you right now?”  It’s a question of connection.  It gives the person you’re connecting to the ability to be in the moment.  It gives each of us the opportunity to understand what it’s like to live in the body, mind, and soul of another human being.

I was involved in an ethics discussion about the interaction between doctors and their patients.  We were exploring the idea of empathy. When we have these discussions, the debate is often about sympathy and empathy.  Noted anthropologist, and one of my mentors, Angeles Arrien expanded the continuum.  Her research and experience shared that sympathy amplified suffering because it emphasized the pity we felt for the another.  Sympathy often comes from the vantage point of “better you than me”.   When we’re empathetic, we end up doing the work for the other person, letting them off the hook because we take on the pain.  However, if we feel compassion we don’t have to go into the emotional state of the other, but we can be totally present.  The state of presence is healing.

Where are we going with all of this?  I want to be present with you.  I want to know what your life is like right now because it’s your true story.  When you share how you are right now there’s an aliveness we can experience any other way.  Let’s shift our perspective and begin asking this very important question and see how our experiences with others change and deepen.

Posted in Having a Voice, In the Know, Partnerships

Doctor’s Bias Impacts Your Health

I never really thought that there could be differences in treatment based on the characteristics of my doctor.  My assumption and those of many people I speak with is that training gives doctors the tools to treat patients and that there are standards that doctors adhere to providing equal outcome opportunities for all patients. 

It should be no surprise that I was shocked when I read an article today on www.msn.com that reports on a study by the Herbert Irving Comprehensive Cancer Center at Columbia University.  The study looked at 30,000 women 65 and older with breast cancer having breast conservation surgery between 1991-2002.  The study found that there was a difference in the patients given radiation treatment following the surgery greatly reducing the risk of recurrence.

Could it really be that my doctors bias on treatment is based personal characteristics?  This information puts creating a relationship with my doctor even more important.  Maybe I need to ask questions to flush out the doctor’s biases.  The study also looked at 4453 surgeons who operated on these women in the study.  The study concluded that characteristics such as gender of the surgeon, whether the medical professional was and MD or DO or whether the doctor was trained in the US could be factors in the difference between radiation treatment and no radiation.

This study although from the cancer community is not cancer related.  This study is medical training related.  This study asks us as pilgrims walking the journey of life-altering illness to become more inquisitive of our medical providers.  It’s not enough to know whether the doctor has any malpractice claims, now we’re questioning their judgment based on factors that I never would have considered to be part of the conversation.  What new questions will you ask of your medical providers?

Posted in Emotional Health

Emotional Transparency

How readable are you?  There is a continuum from the very stoic person to the person whose heart lives on their sleeve.  Are either of these ideal?  Well the truth is nothing in extreme form is usually good for us, so we need to come up with some level of balance to live harmoniously within our own bodies.

Emotional transparency for those facing a life-altering diagnosis becomes an important part of living honestly with the cards you’ve been dealt.  No one has to put on a game face when tackling huge challenges.  When we aren’t connected to our emotional state others will read what they want to read about you.  Billy Crystal many years ago had a saying “It’s better to look good, than to feel good.”  Although funny as a comedy line, it can be devastating to our daily functioning and harming our health.  How many times has someone you know that’s ill heard, “But you don’t look sick”.  I always wonder what that means.  All I can picture is saying, that’s correct, I don’t carry a toilet around my neck like a horse has a feed sack.

When we are honest about how we’re feeling we’re more inclined to self-nurture.  Others are more likely to provide help when help is needed.  Your doctor will have a better chance of knowing how best to help you aside from the obvious medical treatment you’re receiving.  Struggle does not have to be work like a badge of courage.  Let your light shine through even when you have days that may be cloudy or hazy, others will learn to read you, they learn to read the weather don’t they?

Posted in Anonymity, History, In the Know

Homage to our Heroes

When we walk this world as a pilgrim we are in search of answers.  Sometimes the questions are those of an inner nature, emotional or spiritual.  Other times the questions are very pragmatic, especially when facing a life-altering diagnosis.  The questions that rise to the surface are related to research, treatment options and new frontiers.

It’s important to know about the researchers who are working on your particular health issue.  Become familiar with their names and talk about them.  It’s important to increase their name recognition because that brings attention to the work their doing and down the road can result in increased funding for research. 

There are some great men like Dr. Judah Folkman who prefer to be quiet heroes.  They don’t like to be in the spotlight and deflect the attention from individual attention to repositioning himself as part of a collaborative.  His work in cancer research is heralded as ground breaking and the foundation upon which much of today’s research is based and yet his humanity always shined through.

In a recent Newsweek article, following Folkman’s recent death the article referred to his tenacity when facing scientific skepticism.  They go on to share the fun other scientists had with his ideas, almost in a mocking fashion.  But the tides would turn and researchers would come to understand not only the plausibility of his work, but the realization that his work could and would be the epicenter of treatment coming down the pike.

The article shares a great quote from Folkman about the asking questions to get ahead.  He said, “You have to think ahead, Science goes where you imagine it.” So give the researchers working on your behalf the honor they’re due.  You can always find out about the work by logging on to the associations and organizations that support your health issue.  Become a pilgrim and find your own soap box.  The result down the road can be great findings that can improve your health and the quality of your life.

Posted in Anonymity, Having a Voice, In the Know

Is it Really Possible to be a Tourist?

Ever hear the saying “Been there, done that, bought the t-shirt”?  When we are a tourist we go somewhere as an observer.  We participate on the fringe.  We look, often are told not to touch and at then end of the day we smile because we enjoyed ourselves.  There is not attachment to the outcome because the only expectation is to have fun.  Why do some people facing a life-altering diagnosis live their lives like tourists?

The easy answer is fear.  If someone receives a life-altering illness and takes no action, without really giving it careful consideration it’s like being a witness to a horrible accident, only in this case they’re the victim.  On the other hand, there are people who receive the diagnosis, go to the doctor, engage in treatment but are removed from the process.  For them it’s like having an out of body experience (not sure how that happens when it’s their own body).

Those of us who walk this journey as pilgrims know that we have to get down in the trenches and sure enough we’re going to get dirty.  There are times, like on the 500 mile pilgrimage in Spain, that you’re thinking the journey will never end and the suffering, pain and exhaustion are endless.  In many cases, the challenge has defined margins but it’s hard to see the end when wind is blowing in your face (like all the media discussing longevity, research trials and the endless pharmaceutical commercials on television).  What we need to remember is that having faith in our journey is the primary means of being a participant in your care. 

The pilgrimage is long because you have to show commitment to your healing.  The pilgrimage is long so you can have time to weed out of your life those things that don’t matter or get in the way of living a better, less burdened life.  The pilgrimage is long because you need time to take back the control you lost when you received your diagnosis.  It’s a time to regroup and re-attack.

We can’t afford to be tourists in life when facing a diagnosis.  Remember, those who are well behaved rarely make history.

Posted in art and healing, Having a Voice, Self-Nurture

Keep an Open Mind

Keeping an open mind if often easier for us as patients than it is for the medical community.  However, I have run in to many people facing a life-altering illness who think treatment is to be done one way and one way only.  I was watching “Grey’s Anatomy” last night and one of the patients in the hospital awaiting treatment was a hands-on healer.  She went and healed various patients in the hospital much to the chagrin of the medical staff.

The true test came when one of the doctor’s child was critically injured and was on a respirator.  The doctor approached this woman to do a healing so her son could breathe.  After the healing, miraculously and thanks to the writers the child was able to breathe on his own.  The point here is that healing can take place in many ways besides pharmaceuticals and machines.

When deciding on a treatment plan it’s important to discuss all types of treatment options with your doctor and other treatment providers.  Remember, everyone needs to be kept in the loop so there aren’t any surprises.  If you’re going to an acupuncturist, tell your physician; and tell your acupuncturist about the medication your taking because it will impact the pulses she’s trying to bring into balance.

I’ve worked with people to bring about healing through art.  I find that ultimate self-expression is often a great catalyst for the body to step up to the plate and find its own balance.  If you believe in prayer look into the work by Dr. Larry Dossey.  It’s all individuals so don’t take a universal treatment protocol as your only answer.  Get your doctor to see you as an individual and not as a disease.

Posted in In the Know

Small Changes May Have Big Results

Having just entered 2008 many of us have made New Year’s resolutions.  We know that many of us will be drifting away from our resolutions just about now, the average is about two weeks.  What if you’re ability to control your health came is small, easily digestible changes to your daily routine.  You may be laughing but it’s true and not difficult to make part of your daily routine…I’m talking about drinking tea.

 Research is increasingly showing us that drinking green tea has health benefits.  I know we live in a coffee culture, believe me I’m one of the many that loves coffee, but the research seems to be growing about the health benefits of green tea.  It’s not only the tea itself but the ritualistic nature of drinking tea that I believe adds to its healing properties.

Coffee seems to be an on-the-go type of beverage.  In many homes and businesses it’s always brewed or brewing.  Tea on the other hand requires you to stop for a moment to prepare the tea and then a couple of minutes waiting for it to steep.  Finally after the tea is ready there is an inclination to drink tea more leisurely reducing stress and giving you a moment to center yourself and then proceed with your day.

If you look at the Japanese tea ceremony, it’s centered around the ceremonial experience.  It takes time.  It is connected to visiting with others.  All of these components, ceremony or ritual, spending time with others and the natural healing properties of the green tea add up to health and healing.  It’s a small change with the potential for a huge payoff.  Aren’t you willing to add momentum to your healing process by drinking green tea?

Posted in Personal Conviction

Let’s Not Forget About the “Care”

I heard an interview on Good Morning America with talk show host Glen Beck.  Glen had gone into the hospital for outpatient surgery and it was followed by complications that became very serious.  During the interview he was outraged by the care he received in the hospital.  It became so bad while he was in the hospital that he wanted to die.

The message is how do we put the “care” back in “healthcare”.  We have a nursing shortage in this country and the trickle down effect is more patients and fewer nurses.  I recently spoke with a woman who was wait listed for nursing school.  It wasn’t about her qualifications, but they didn’t have enough instructors to teach, limiting the number of students they could accept in the program.

Having a relationship with you healthcare provider is essential.  It’s easier to achieve with a doctor you see regularly, like your general practitioner.  When we have a health crisis we’re often starting from square one with new medical providers and if you’re not a good advocate you may get lost in the shuffle.  It’s not about will you get care, but what kind of care will you get.

Remember in “Terms of Endearment” when Shirley MacLaine began shouting for her daughters meds?  I’m hoping you don’t have to get to the point of screaming, but having a voice is crucial to getting the best care.  The optimal experience is to become self-empowered and ask for what you need.  Unfortunately, we’re not always in a position where we can advocate for ourselves.  It’s crucial that you have someone who can advocate for you and who knows you well enough so they can help you maneuver the system. 

Hospitals are often on very tight financial strings and it’s time that we aided in the healthcare revolution.  As patients we should be entitled to a level of care that is universal.  We shouldn’t have emergency rooms with a ten hour wait.  We shouldn’t have physicians who are working over eighty hours a week and expect them to be conscious both physically and spiritually.  Be a part of the change and become empowered to ask for the care you want and deserve.

Posted in Anonymity, Community

It’s a Small World

I was surprised to read that Dorothy Hamill, the famous ice skater, was diagnosed with breast cancer.  I wasn’t any more surprised than hearing that one of my neighbors was diagnosed, the difference is the world wide notification of the event.  It’s easy to believe that if we’re not a celebrity that we can keep our health secrets to ourselves, but that’s an illusion.

 There are obvious things that would tip off our friends and family that something health related was happening.  Someone may notice pill bottles in a cabinet.  Some treatments will leave the person without hair.  Some people may have to use some sort of a device to help with mobility, other signs are a bit more subtle.

What’s not subtle is showing up in your doctor’s office only to find someone in your circle already sitting in the waiting room.  That’s exactly what happened to me one afternoon and after the initial sense of awkwardness passed we could both release  a sigh of relief because we didn’t have to pretend to each other.

The world is a much smaller place than you can imagine, especially with technology keep us linked together.  You don’t have to share your health concerns with anyone, but be aware that you can’t crawl in a hole and be anonymous forever.  Most of us don’t have the option of staying in our homes with health professionals coming to us until our health issue is resolved or markedly improved.  We will be out in the world and you’ll find others are having similar struggles.  Know you’re not alone, and that may be enough to provide a small nudge of support.  It will at minimum reduce your feelings of isolation.

Posted in Community, Having a Voice, Partnerships

Who’s On Your Side?

It’s scary to think that the Presidential race is in full swing.  The Iowa caucus yesterday was the kick-off of the race for the White House.  I’ve heard lots of discussion about the war in Iraq and the a bit less on the economy even though polls show that’s the number one concern of the American public.  If the politicians aren’t discussing what’s number one, how do we have any chance of them discussing healthcare.

It’s at this time that we can have an impact on the political process.  Who is going to back funding for research for new medical treatments?  Who’s going to address the co-pay situation…I have one medication that if I had an 80/20 split I’d still pay $200 a month for one prescription.  Who’s going to pave the way disease prevention strategies and programs?

When facing a life-altering illness these are the questions you ask not just during the presidential campaign, but every day of the year.  For some illnesses, if a celebrity didn’t take center stage the illness would fade into the background and it wouldn’t receive funding, even if research institutions wanted to work on the project.  It’s why many individuals are finding ways to self-fund research.  I saw a story on World New Tonight about a mother whose child had cancer.  There wasn’t funding for the necessary research so she started a campaign to raise between 2 and 3 million dollars to make it happen.  Her first fund raiser, selling cookies, raised approximately $200,000.

 I’m in awe, but now it’s time that the politicians realize who they are working for…US!  Hold your politicians accountable and make your voice heard throughout this election year.  It could save your life!