Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Illness Narrative, living with chronic illness, Living with Illness

What Does the Word “Survivor” Mean to You?

We all attribute meaning to words based on the context in our lives. The word survivor has been bestowed upon those who live with a chronic or life-threatening illness. However, the word “survivor”, often, also describes those who have been the victim of traumatic events like violence and natural disasters.

Yesterday was the one-year anniversary of the bombing at last year’s Boston Marathon. There have been lots of interviews, television programming, and of course tributes to those who died in this horrific event, and an opportunity to celebrate the way the amazing city of Boston banned together.

This is why I was surprised when I was listening to an interview on NPR’s “Fresh Air” with Terry Gross. Gross was interviewing noted author Barbara Ehrenreich about her new book. At one point in the interview Gross asked Ehrenreich about her 2001 diagnosis with breast cancer. The dialogue took a surprise turn in comparison to many who have been diagnosed with an illness; she was a rebel.

Ehrenreich started by dismissing the “pink” movement as it relates to breast cancer. She’s determined not to die with a pink teddy bear in her arms. She didn’t want to be associated with a specific movement feeling that it’s an insult to the integrity of people facing illness. Whether or not you believe it’s a positive depends on your own identity issues, need to belong to something bigger than yourself, or the opportunity to support an organization that provides support, screening, and research in the breast cancer arena. This dialogue was not the surprise; it was her discussion about not wanting to be called a “survivor”.

Terry Gross dug deeper into the anti-survivor rhetoric by asking Ehrenreich to express her disapproval of being called a “survivor”. Ehrenreich shared that she believes the word “survivor” implies that someone was courageous, brave, and successful beat the disease. Her problem is that she feels that it’s dishonoring all those people who were equally courageous and brave, but whose bodies and treatment regimen didn’t match for the positive. She doesn’t want to diminish any of the positive qualities those who face an illness exhibit.

So is there a difference between surviving and being a “survivor”? What are your ideas on being a survivor? Please share your experience in the comments section below.

For more information on living with chronic and/or life-threatening illness visit

Posted in after the diagnosis, art and healing, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

If Mary Chapin Carpenter Sang It; It Must Be True

I was in the car yesterday listening to NPR and there was a segment with Mary Chapin Carpenter, the fabulous musician.  The intro to the segment talked about the loss she had suffered in the past couple of years: a pulmonary embolism,  a divorce, and the death of her father.  She lived through enormous grief and took those experiences to the studio to create her new album.

I always keep a pad and pencil ready because inspiration and questions arise throughout the day.  When Mary Chapin Carpenter began to sing and reached the chorus I was hooked.  The song she was singing is titled, “Chasing What’s Already Gone”.  Are you thinking what I’m thinking?

I started to think about all the thousands of stories I’ve listened to over the years about how individuals and families survive an illness.  There are many, whether they realize it or not, who are chasing their life prior to their diagnosis.  Even if your health returns, you are not the same person.  Chasing the person you were is impossible.  These new experiences on your journey to health and healing have changed you forever.  It’s amazing how subtle the changes can be, but if you’re willing to be honest with yourself you’ll notice those internal shifts.

My concern is for those who are chasing what’s already gone; a life without illness.  There are people who will face chronic conditions, but are striving to be the person they were before the diagnosis; how is that getting in the way of your inner peace and happiness?  We’ve discussed creating a life with a new normal and that seems to reap the most rewards.  “Chasing What’s Already Gone” potentially seems like a bigger drain of personal resources than the health challenge.

My question for you is how can you chase what’s possible instead of what’s already gone?  How will you set yourself up for success instead of grief and strife?  If you’re looking for some extra support, feel free to email me at

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Storytelling

Journey to the Center of the Story

I’m in the midst of completing my doctoral dissertation.  It’s a long and arduous process at least that’s what I thought until I went on a trip to California the past 2 weeks.  I spent time with a nonprofit, Visual Aid, who works with artists facing life-threatening illness continue to create.   They were gracious enough to assist me in recruiting potential interviewees.

I was sitting in the first interview and felt like I had come home.  I was interviewing an artist whose story was so authentic, hopeful, and complex (not meaning difficult, but layered like his art).  As I moved through the interviews I found the same qualities with each participant.  I was taking a journey to the depths of storytelling that I’ve never experienced, even in my thousands of hours of hours working with psychotherapy clients individually and in groups.  These twelve artists shared with me verbal canvases that were masterpieces.  Their stories matched the work, and their spirits were the greatest masterpieces of all.

It confirmed the importance of our stories.  The interviews catapulted the story to the top of my list when it comes to inspiration, hope, and possibility.  These are three qualities that are crucial when living life with a chronic or life-threatening illness.

While in San Francisco I was reminded by the importance of our stories.  I went to the Contemporary Jewish Museum, and in the corner of one of the exhibits was a booth with the words StoryCorps written at the top.  National Public Radio airs stories of people from around the country who step into one of these booths and record for all of posterity a story that is important to who they have become and how they got there.  It was one more sign that the story was at the heart of the dissertation.

If you know an artist with a life-threatening illness who might be interested in telling their story, I hope you’ll pass on my information.  I think this project will impact how we look at illness, and the stories of those who tell them.  Please refer them to and look for more stories!

Posted in Storytelling

Do You Really Know Your Own Story?

Terry Gross of NPR’s “Fresh Air” is one of my favorite talk show hosts.  I think she’s inquisitive and very smart.  One of the things about the show is that they often replay interviews with individuals when they die as a memorial.  A couple of weeks ago I was listening to Gross interview Barbara Lea, a cabaret singer who died on December 26, 2011.  The interview was fascinating.  I went on to read her biography listed on her website,, in the biography it states that she had a been a minister for 20 years in the Church of Actualism.  When I read that the statement she made came to life.

We all know how I feel about stories; I love them.  I believe that our stories are the portals to wholeness.   I believe that our stories are the threads that connect us to each other.  I believe that our stories unlock the mysteries to our body, mind, and spirit and that is crucial when we’re looking to get better or well.  Our stories are why pathographies, telling our story in support groups, and our personal experience of our health challenge directs our journey to wellness.  During the interview with Terry Gross, Barbara Lea stated, “You have to know the story before you tell the story.”

It’s a rather simple statement, but it’s something that I believe in very strongly.  Too many people like to tell their story, but aren’t necessarily connected to their story.  We have a tendency to tell a story that makes us look good because we believe that we’re being judged based on our story.  The problem with this modus operandi is we begin to distort our story the more times we tell it.  So what was Barbara Lea encouraging us to do?

Lea was encouraging us, possibly even challenging us to become one with our true story.  Our story is our legacy.  When we connect to our true story we stand a little taller.  We unify our body, mind, and spirit decreasing the inner struggle that takes place with so many people.  The big question is how do we connect to our own story?

If you haven’t engaged in deepening your connection to your own story, now is the time.  Creating a sacred space to engage in this exploration is important.  We need the safety and open environment to allow ourselves to begin this personal pilgrimage.  There’s no doubt this is a journey.  It is an ongoing process and each time we engage in this type of self-exploration we add more details to the story.  Our stories become more colorful, rich, and healing.

I encourage you to find a way to start this personal pilgrimage and begin your journey to wellness.  It’s a life-altering experience for the good.  When you’re facing any kind of personal challenge, health or otherwise, knowing your story allows you to tell your story with stronger conviction.  Our capacity to tell our deeper story allows our healing to unfold; this gives our bodies the space to expand its wellness capacities…isn’t that what we all want?


Posted in art and healing, creativity and health

Health, Healing, and Ballet

Welcome to Art and Healing Wednesday!!

I love to be inspired…it’s what helps me get from one day to the next.  I find inspiration everywhere I go, in everything I do, and everything I hear.  This week I was fortunate enough to hear Terry Gross of NPR’s Fresh Air discuss a new book on the history of ballet.  The book, Apollo’s Angels: a history of ballet, by Jennifer Homans discusses all aspects of ballet from the personal (she was a dance) to the cultural and historical aspects of the dance.

Homans made an interesting observation about ballet; you don’t need to understand a spoken language to appreciate the art form.  It’s a  universal art form that appeals to multiple senses.  In addition to the art and creative aspects of ballet, Homans discussed the spiritual side of this beautiful art form.

She spoke about George Balanchine, one of the world’s greatest choreographers.  Balanchine believed that ballet was a philosophy and an approach to life.  He believed that dance and music were sacred art and that one finds G-d through the senses. 

While discussing Balanchine who was Russian Orthodox, she spoke about ballet almost being a religious experience.  She says, “There’s something almost religious about ballet, about being a dancer, the commitment, the ritual of going to class every day…When you work very hard and achieve coordination and skill in the body, there’s a way in which it sets you free.”

So what does this have to do with health and healing?  Knowing the body is crucial to become a good dancer.  Understanding what and why things hurt or are different in the body are crucial for the dancer to know to prevent injury, but still push the dancer and the body to peak performance.  The same is true when you are diagnosed with an illness.  Understanding what differences in the body are natural/normal given the diagnosis and those that need attention can truly be a life saver.

Just like an athlete understanding your body’s mechanics will enable you to catch changes early so they can possibly be thwarted if they are negative; or enhanced if they are positive.  Your senses will allow you to experience life from new perspectives.  Balanchine’s philosophy was to “give it all now”, something we all should be working toward…mindfulness and presence.

Maybe you’re a budding dancer and maybe you’re not, but the lessons from ballet can aid you in trying to get better.  The philosophy of the world’s greatest dancers and choreographers can be applied to living your life successfully with a chronic or other life-altering illness.  After all….who wouldn’t like to experience a little transcendence?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Responding to the Call

We’re all called by something.  When diagnosed with a chronic or life-threatening illness it’s your health that is sounding the call.  I’m amazed how many people go through the motions when answering the call thinking they are doing all they can to get well.  The truth is that a half-hearted attempt isn’t going to suffice.  You have to put everything you have behind your beliefs and turn them to actions.

I heard a radio ad today that shocked me.  It isn’t often that illnesses or life circumstances related to health advertise on the radio, but lo and behold the voice of those facing chronic and/or debilitating pain has a radio commercial.  The last line of the ad says, “Speak Up…Speak Out…Take Action”.  It’s clear and to the point.  Is there any part of that phrase that you can argue with?  Do you think this phrase only pertains to those facing pain issues?  Don’t be ridiculous, every patient should consider these three steps as part of their treatment regimen.

When you  respond to the call, in this case “Speak Up…Speak Out…Take Action” you are activating parts of your physical, emotional, and spiritual being that may have been napping for a very long time.  It’s this motto, slogan, or challenge that will provide you with a road map to making the great shift; moving from a passive stance as a patient to an active patient.

This ad was heard on NPR following an interview on “Talk of the Nation” shedding light on the issues related to individuals who are intellectually challenged.  One caller whose son has Cerebral Palsy shared how that when people stare at her son she engages them in conversation.  She will ask them if they have questions.  Her idea is to engage in a way that she’s speaking out by encouraging others to voice their unease and lack of understanding. 

Don’t you think the same is true when you see a woman in a store wearing a baseball cap or scarf clearly with no hair beneath?  How can they speak up/speak out/take action?  It doesn’t have to be out for the whole world to hear, but something very private, but it needs to happen.  You need to respond to the call with your biggest voice possible.

Posted in Uncategorized

Metallurgy and Health

Our country is always looking for sources of energy and one of the industries in the US is mining.  We mostly hear about mining for coal since we need to run our electric plants and heat our homes.  Scientists are looking at other areas, particularly metals and seeing how they can impact your health.  The big health issue in the news is the dramatic increase in hospital infections such as MRSA and C-diff.  These infections can be life-threatening so coming up with new and innovative ideas for curbing the spread of infection is welcomed.

Last Friday, NPR’s Science Friday had a scientist on who was discussing the impact of copper on your health.  We all remember all those folks wearing copper bracelets in hopes of curing arthritis, but as it turns out copper may be bacteria’s worst enemy.

Preliminary studies show that copper and its alloys, brass and bronze, have anti-microbial effects.  In essence, they serve as sanitizers or resistors to infection.  A study is being conducted looking at the impact that having copper covered bed rails, call buttons, etc. will decrease the transmission of life compromising infections.  The study is being conducted at three hospitals: Memorial-Sloan Kettering, The VA in Charleston and MUSC also in Charleston.  The researchers chose three hospitals that have specific populations that might be more prone to these hospital based infections.

It’s this type of research that is working to make hospitals safer.  No one wants to spend any time in a hospital but if you do wouldn’t it be nice to know that your environment isn’t a bigger health risk then the disease that’s challenging you?  Any steps we can take to make the hospital a place that truly works to ward off disease and promote health is a step in the right direction.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Fear and Panic

I am continuously looking at new ways of looking at the world on a daily basis.  In order for me to understand certain ideas or concepts I use the recipe method.  I take the concept and begin breaking it down into its components.  My hope in doing this is that I get a stronger grasp at what comprises this concept and chunking it down gives me more maneuverability in overcoming the obstacle or challenge.

Yesterday I was listening to Terry Gross on NPR’s “Fresh Air”.  She had a guest, a noted poet, who has had some health problems in recent years.  During their conversation she asked him about his fears regarding diminished physical capacity.  His response was clear…you have to week out the panic from the fear.

I’d never deconstructed fear and never really included panic under fear in the organizational chart of emotions.  The interesting thing is that as soon as he said it a ray of light cut through the cloud in my head providing me with a level of clarity I hadn’t had previously.  The idea that panic is a component of fear was thought provoking.  Let’s face it, whenever someone receives a diagnosis for a chronic or life-threatening illness there will be fear.  I guess the question is does panic need to accompany fear or is it something that compromises our intellectual, emotional and spiritual defense mechanisms?  Is it panic and not the fear that causes moments of irrationality?  Is it panic and not fear that keeps us tied up and chasing our tails?

There is a saying that pain is inevitable but misery is optional.  I’m wondering if we can apply that same thought to our current discussion…fear is inevitable (when diagnosed with illness), but panic is optional.  I know your next question, “how do you curb the panic?”  My first recommendation is to stop and not do anything.  The tendency is to go into overdrive and get caught up in the frenzy of the diagnosis.  Sitting with the news, even for a short period of time will give you time to prioritize your next steps and create a plan.  There are many other ways to week out panic and I’ll discuss that over the next few weeks.

For now, be conscious and try to differentiate between fear and panic.  What are you doing to avoid that state of panic?  Are you able to honor the fear without triggering the panic?  I’d be honored to hear about your journey.