Posted in Illness Narrative, living with chronic illness, Living with Illness

Flat Tire, Speed Bump…Your Call

How we speak about something gives it meaning.  Not only do words give meaning, but the words you use determine the power behind the event.  The Eskimos have many words for snow because there are different types of snow and in order to express themselves accurately and clearly to others they must use the correct verbage.  Many of us are generalists when we speak.  Our hope is that when we speak others will get exactly what we’re speaking about, and unfortunately when expressing yourself in regards to a health challenge, that may not be the case.

Let’s take the experience of “pain” as an example.  You may express to someone who you’re in pain.  Universally, others may think about the pain they experience with a toothache or a headache.  So what would happen if you became more specific about the “pain” you’re experiencing.  Is there a difference when you read “I’m in pain”, and “I’m experiencing a piercing pain”?  Do you think the person you’re telling about your pain will react differently to the first expression of pain than the second?

It’s about creating a context for your experience.  Is your diagnosis of a chronic or life-threatening illness a flat tire on your journey or is it a blow-out?  Is your experience of a health challenge like going over a speed bump or doing a Thelma and Louise off the cliff?  In each of the previous descriptions how you express your illness experience evokes different experiences in those hearing your narrative.

There is nothing we want more in life than to be seen and heard.  Following the diagnosis of a chronic or life-threatening illness many people feel isolated.  Part of that isolation is because others aren’t aware of your situation.  When you speak in generalities other’s responses will follow suit.  When you speak more specifically you internalize the experience and can take actions that will alleviate the intensity of the experience or move you in the direction of getting better or well.

Don’t believe that if you speak more pointedly that you’ll invoke some sort of negative energy within your body.  The truth is that being authentic about your experience is freeing.  It allows you to take action because you have something honest and pure to respond to on your journey to wellness.  What do you want others to know or what do you want to know more deeply?  That’s the question that will guide the context of your experience and your illness narrative.

Posted in art and healing, creativity and health

Poetic License

Welcome to Art and Healing Wednesday!!

We tell stories about our lives every day.  Some stories are happy, others sad, but all-in-all each story reveals a piece about who we are as we walk this world.  Our stories are often dependent upon who we’re with or where we are at any given time.  You may tell someone a very different story about yourself at the grocery store than you would in a support group meeting.  Our context determines the depth of our story.

As I work on my dissertation, I’m exploring the role of the “illness narrative” in the lives of those diagnosed with a chronic or life-threatening illness.  These “illness narratives” can provide information about your health to your medical team, share your deepest concerns and fear, or simply be a way of letting others know about your experience.

It shouldn’t be a surprise that sometimes our story can be told in a more artistic fashion.  Poetry has become one method of sharing your “illness narrative”.  You may want to check out the work by Rafael Campo, “The Healing Art”, or John Fox’s book, “Poetic Medicine”, to get a broader view of how illness can be served by poetry.  In addition, check out Robert McDowell’s book, “Poetry As a Spiritual Practice”, or my friend Kim Rosen’s book, “Saved by a Poem”, to explore other ways in which poetry can positively impact your life.

I thought I’d share a poem I found while doing my research so you can see the impact and the intensity of how poetry conveys deep emotion.  I hope you enjoy the poem.  The poem is by Simmons Buntin and was in an article titled, “Special Supplement: ‘Creative/Artistic Narratives of Illness.”

Lupus

After the dry shell splits

and falls, my sister (the dark-

edged butterfly) rows her deep

blue wings of Japanese paper

into the thick liquid

of the dawn.  Violet or perhaps

phlox-a flower familiar

as the bird-thin bones of her labored

hand-gives pause.  She lands,

drinks from the pearl-fruited anther,

slips suddenly into the flat palm of the wind.  Mad

at herself for giving in,

she flutters wildly against the branches hemming her life

a ribcage.  Cracked and leaning,

the sternum splits and my sister

is speared.  The disease finds

its way quickly through the light

cells of winds, body, spirit.

Rising, she crawls to the limb’s

arthritic edge.  Torn and dying,

she is the last brilliant leaf

on this failed and falling tree.

Posted in after the diagnosis, Emotional Health, living with chronic illness, Living with Illness

What’s Your Vulnerability

It does seem that television is becoming inundated with reality shows.  If you watch the television line-up you want to start to believe that this is reality, but what most of us forget is that what you see on television is only what the producers want you to see.  Hours of footage is left on the cutting room floor because it doesn’t make for “good tv.”  So what show did we get a lesson from this week?

Fortunately for the Oxygen Network there is nothing on television on Sunday evenings, so I was watching “The Glee Project”.  As you may know, Glee has become a phenomenon for its high school antics and musical renditions performed by amazingly talented young people.  “The Glee Project” is auditioning 12 finalists and the winner will get a 7 episode run on the show.  So what you might ask?  I thought so too until I saw this weeks episode.  They have a weekly theme and this week was vulnerability.

For their song and video the contestants were to wear a sandwich board with a word that represents something that makes them vulnerable in their life.  It shouldn’t be a surprise that some of the contestants were disconnected from their vulnerable selves, but others dug deep and it tugged at your heart-strings.  Those of us with a chronic or life-threatening illness are vulnerable, but too many of us try to hide this vulnerability.  perhaps it’s the Darwinian theme of survival of the fittest and that showing vulnerability makes us prey to the vulchers around us.  However, the vulnerability makes us more human.  It opens our hearts to possibility.  It allows us to see the goodness in others by their showing of love and support.

What do you feel most vulnerable about?  How do you think it impacts how you walk in the world?  What is it that you want others to know about you so that they understand you and your life situation a bit better?  You are not your illness, your illness is a part of you, but how does it color your day-to-day life?  How have you learned to share your vulnerability with others?  I believe that support groups are great training grounds for sharing your vulnerability.  It’s a safe environment, with people who will understand and have compassion.

What sign would you wear for “The Glee Project” video, and what part does vulnerability play in your life?

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

It’s All A Matter of Degree

Life is a continuum, that’s not news, but the fact that we can move up and down the continuum may be news to some.  For those facing a chronic or life-threatening illness there’s obviously a continuum and you went from one end of the continuum to somewhere beyond the center to the other end of the continuum with your goal of making it back to the other side.  In most cases returning to a state of health comes with some medicine, science, faith, and determination.  Sweat equity on the physical, emotional, and spiritual levels is mandated.  How you choose to attain your goal of getting better or well is up to you, so why not give yourself every advantage possible?

Yesterday was a lazy Sunday afternoon and I was watching a movie on the DVR.  I was watching a romantic comedy called “When In Rome” (cute…glad I didn’t have to pay for it).  At one point during the movie the main character is getting married and is having doubts.  She decides to have a talk with her dad about his marriage and life in general.  Then comes the line that’s the focus of our conversation.  He says to her, “Remember what I told you” and she says, “If you’re going to be a bear, be a grizzly.”

It’s important to take the line from the movie and exam it for your current journey to wellness.  Think about a bear for a moment but more importantly, think of a bear in the wild, not in the zoo.  If you need to go watch a show on Animal Planet if you need some coaching on the nature of the bear, but I can tell you they are fierce.  They are a “take no prisoners” kind of animal.  They’re big, and I don’t mean just in size; they have a big persona.  They take up a lot of space and they use that persona to their advantage for their livelihood and survival.

What’s fierce about you?  I’m not talking about become aggressive and overbearing.  I’m talking about a bravado or a courage that rises to the surface from your soul that states to the world your intention for health and healing.  It’s focused on eliminating the victim mentality and placing yourself in a position of control.  My hope for you is that you embrace your inner grizzly bear and let the world and your own body know that you mean business.  You’ve got a stake in making the most of your journey to wellness…your quality of life and your life itself!  Be the best grizzly possible!

Posted in Caregiving

Anticipation

Welcome to Caregiver Friday!!

Summer has officially begun and the 4th of July is right around the corner.  One way this becomes clear is that there are a number of stands selling fireworks throughout the area.  Unfortunately in my household there is a scaredy cat…or rather a scaredy dog.  My dog Bella is terrified by the sounds of the firework and once they begin she retreats to the corner behind the couch and the end table; a cramped little space where she feels safe.  She hides back there because, as we all know, those shooting the fireworks don’t stop after one firecracker.  She’s well aware of this so she takes measures to make herself safe.

The same is true in caregiving.  It’s a role that doesn’t end until the person is either healed or cured, and the road to recovery is filled with twists and turns.  Is it really any wonder why caregiver stress and caregiver burnout are rampant in our culture.  We expect you, the caregiver, to provide 24/7 care without backup, training, resources, or any other relief strategies.  There are self-help books and support groups and those are great, but they don’t alleviate the anticipation of waiting for the other shoe to drop with the one you love.

Caregiving is wrought with anticipation.  It leaves you, the caregiver, a little edgy at times because there is no protective barrier for you the way you serve as protection for the person facing the chronic or life-threatening illness.  The anticipation is heightened because you feel vulnerable and exposed.  In many cases you are the liaison between the patient and the doctor and let’s face it; the messenger is the one who always gets shot.

So how will you deal with your anticipation?  Anticipation is rooted in anxiety, and in this case the anxiety is rooted in fear (kind of the domino theory of caregiving).  It can be draining and exhausting unless you set procedures in place for self-care.  This is one of the times when a family meeting is very important because everyone needs to be on the same page.  Caregiving is not a one person show, it’s an ensemble cast.  Who is responsible for what in your circle?  Think of it as being a project manager.  Different people have different responsibilities and you hold those people accountable for their activities and responsibilities.

Waiting for the other shoe to drop is terrifying so the first and most important activity is to consider what makes you the most anxious.  Taking a personal inventory of your own concerns and Achilles heal is vital.  I know, for me, that illness isn’t the big anxiety producing event, but pain and suffering raises my anxiety factor.  Everyone has that one or couple of things that sends their anticipatory anxiety through the roof.  Know what it is and find ways to curb that anxiety.  Support groups are great because you may find others who have the same fears and you can become a band of brothers/sisters.

Anticipation may be great when waiting for Heinz ketchup to come out of the bottle, but it is counter-productive for your own physical, emotional, and spiritual wellness.  What are you going to do to lessen the impact of anticipation?

Posted in Having a Voice in Healthcare, Living with Illness

Medicine and the Human Factor

I was watching the news yesterday when a report about a Southwest Airlines pilot hit the airwaves.  Evidently, the pilot didn’t know that his mic was stuck in the on position and he went on a tirade about the fact that the flight attendants were either gay, old, or fat, leaving him with limited choices for sexual exploits.  It obviously took those on the radio frequency by surprise, but more importantly it raised some eyebrows amongst the Southwest Airlines crews.  So what does this have to do with being diagnosed with a chronic or life-threatening illness?

It’s been discussed and written about in multiple books about how physicians refer to patients as “the kidney in room 202”, or “the brain tumor in 202”, reducing you, the patient, to the most minimal of descriptions.  Why is this important?  Because the goal is to have the medical team look at you as the total package, not simply your disease.  There is more to you than simply your diagnosis; the diagnosis is a part of you, it doesn’t define you.  When or if we hear providers speak this way it reduces our faith in them as people.  This is why so many medical schools are starting to incorporate Medical Humanities into their curriculums.  The idea that if you bring some humanity into the medical arena the relationships between physician and patient get better, diagnostics are more accurate because future physicians are being trained to listen to the patient’s story; their illness narrative.

If you haven’t read Jerome Groopman’s, “How Doctor’s Think”, please finish this post and rush to the bookstore for a copy of this book.  If you’ve been diagnosed with a chronic or life-threatening illness this book should be surgically attached to your body so you have it handy at all times.  The introduction shows the importance of the illness narrative because it helped diagnose a young woman who had been battling her illness for over 15 years.

Words are powerful so using them to improve the doctor-patient relationship instead of hinder it is crucial on your journey to health and healing.  As your illness narrative unfurls it provides vital information for your care and treatment.  The doctor should be more of a detective then mechanic.

What would you like your medical provider to know about you?  How do you think your story could help in your care and treatment?  What have you been leaving out of your story when you visit the doctor, that could be the linchpin that makes you better or well?

Posted in art and healing, creativity and health

Feel The Beat

Welcome to Art and Healing Wednesday!!

Last night on NBC’s “The Voice” one of the contestants sang “Dog Days are Over” by Florence and the Machine.  The performance was riveting.  The vocals were terrific, the contestant utilized the stage, and she participated in the drumming with a group of drummers who were backing her up.  There was something quite primitive, not only about the use of the drum, but the particular beat in the song.  It had an almost hypnotic quality capturing my attention through the performance.

The drum beat has been incorporated in rituals probably since the beginning of time.  Shamans have used the drum during soul retrieval.  Native American ceremonies have used the drum for dance and marking important aspects of ceremonies.  If you look back throughout history you’ll see that the drum has been much more significant than merely the cool aspect of a rock band.

The beat of the drum mimics the heart beat.  It’s as if your heart is beating outside your body.  In rituals in can bring the group together in synchronistic breathing.  It becomes a thread that weaves between all involved in a ceremony.  It’s kinesthetic creating a body, mind, and spirit experience.  It can tell a story.  If you were to engage in drumming you would feel the beat course through your veins.  It would draw you in with its magical sound and gravity of its presence.

When you engage in an activity like drumming you personify the life force.  Having the ability to beat louder and harder creating a tension with sound allow for the release of that tension.  It’s reminiscent of holding on to negative energy in the body and allowing it to vibrate out of your body with the beat.  It’s a crescendo that can have long-lasting health benefits.  It’s emotive and expressive and on your journey to wellness that’s important.  Ultimate self-expression is one of the things that can certainly be a catalyst for health and healing.  Having the capacity and the willingness to engage the strength of the beat brings forth an energy that serves a catalyst for healing.

What happens when you hear a drum beat?  How might you use the beat of the drum in your own healing rituals.  Let’s share our drumming experiences and help promote health and healing!

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

Do You Need Open Heart Surgery?

There’s a lot of craziness in the world; just watch the news, read the paper, or listen to your neighbors describe their experience of the world.  It can be confusing, disheartening, and depressing.  You could simply stop talking to friends and family or cut out the media from your life, but that’s not a cure, just taking care of the symptoms, not the root of the problem.  The problem isn’t the world events; it’s our interpretation and assimilation of these facts and stories into our souls.  Following the diagnosis of a chronic or life-threatening illness it’s easy to cut yourself off from the world because there has been a psychic injury, but following that course of action could lead to serious consequences.

When I ask, “Do you need open heart surgery?” I’m not thinking about cracking your chest open to physically do surgery.  I’m thinking about ways for your to open your heart to the life you have been given.  The idea of opening your heart is not to lie down and take it; but a way to expand what’s now possible in your life given your new circumstances.  It’s about having the courage to embrace a scary world while trying to find an explanation that may not even exist.  It’s about opening your heart to the new visions you may acquire since your diagnosis and as Tim McGraw sings allow you to “Live like you were dying”. 

Following open heart surgery most cardiac patients go to cardiac rehab.  If you were going to open your heart, what would your rehab look like?  What would it take to allow you to expand your world so that you can maximize your quality of life.  I know it takes making some concessions, but I’m also wondering if you limit yourself in one area, where can you expand your world in other areas.  It makes me think about when I first started quilting.  The quilting instructor told us that she only bought 1/2 a yard of any given fabric no matter what was required in the pattern.  She believed if she limited herself in one area it would encourage or force (depending on your world view) to come up with creative solutions.  It forced her to create new pathways to get to her goal.

What new pathways are you going to create following your “open heart” surgery?  How can you open your heart to care, attention, and love you may not have experienced in the past; not because it wasn’t there, but because you were too busy doing other things.  What will your heart-felt rehab experience entail?  I’d love to know how opening your heart helps on your journey to health and healing.  Send me an email at greg@survivingstrong.com

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

Should Your Picture Be On A “Wanted” Poster

John Walsh ended his 23 year career on America’s Most Wanted, a show that helped capture some of the most horrific criminals and helped find missing children and adults.  He brought to light what can be achieved in today’s age of technology and just the humanity of people keeping their eyes and ears open for what’s going on around them.  It’s easy to see why these criminals were on the “most wanted” list, but what about other crimes, like those against the self?  Do they put you at risk of being on the “most wanted” list?

One of the first phases following the diagnosis of a chronic or life-threatening illness is shock.  It leaves many in denial while others scramble to find the latest and greatest treatments, both conventional, complementary, and experimental (not even in the realm of conventional medicine).  The trouble is that without understanding your diagnosis and your own body you may be doing more harm than good.  Those of you in denial (probably not reading this post) are setting yourself up for hardship and that’s never in your best interest.

Being on your own “most wanted” poster results when you begin to let your physical, emotional, and spiritual well-being be on the back burner.  If your health is not primary, then how will anything else in your life work?  I’ve been thinking about this a lot since my return from working out-of-state for four months because it’s was easy to push of my choices on excuses like I didn’t have direct access to my provider, or it was too inconvenient to try to get my medications renewed once the prescription ran out…just another excuse.  So what’s changed?

Upon return from my out-of-town gig I reflected on what was distracting me while I was away.  The truth is I was distracting myself.  I was keeping myself on the run for a while and should have been on a “most wanted” poster.  Fortunately, I found myself before I had a medical catastrophe and was nabbed by the medical community.

It’s a tricky thing to put yourself first because there are so many distractions in life.  I’d like to suggest that instead of running, you stand still.  Be with the distractions and the conflict within you.  Find ways to soothe yourself and align your body, mind, and spirit.  Don’t wind up on a “most wanted” poster, be the face of the hero…your own hero!

Posted in Caregiving

Cost of Caregiving

Welcome to Caregiver Friday!!

Well the numbers are in and unfortunately it’s clear that caregiving is not only an emotional and spiritual issue, but a financial one as well.  A report on ABC World New Tonight with Diane Sawyer estimates that caregiving costs the average person $303,000.00.  This figure is in lost wages, expenses for caregiving, impact on pensions and social security.  I don’t know about you, but that’s a lot of money.

Let’s take it one step further than just numbers.  What about the emotional cost of caregiving.  How can you put a dollar amount on worry?  What’s the physical impact on you, the caregiver?  What has caregiving cost you spiritually as you strive for explanations about how this phase of your life materialized?  What does it cost you mentally to feel out-of-control and at times at the mercy of an illness that’s not even in your own body?

I don’t believe the Congressional Budget Office could factor this monetarily, only you can determine the cost to your body, mind, and spirit.  I guess the bigger question is aside from the obvious aspects of caregiving; how can you cut the expenditures?  I just received an e-mail about using writing in a soulful manner and the it shared a bumper sticker that said, “Life is Fragile, Handle with Prayer”.  I’m not saying that you need to pray to get through the day or to reduce the impact of caregiving on your soul, but finding ways to curb the expense to your spirit is important.  It will allow you to build up resources in your emotional bank so when necessary, you can make withdrawals without running a deficit (leave that to the government).

How will you cut your personal costs to caregiving?  Unfortunately in this day of extreme couponing, there’s no coupon that can give a reduced impact on your soul.  Find outlets to release the negative energy impacting your body, mind, and spirit.  Engage in pleasurable activities, have a lovely meal, engage in a creative activity, join a support group, make an appointment with a spiritual advisor, contact a coach, talk to a psychotherapist, journal your thoughts, whatever you choose I hope it reduces your personal cost of caregiving.