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

Is Surrender Really About a White Flag?

The old cartoons always had two opponents in the heat of battle and finally up from a hole, or coming out of a cave was a white flag signalling surrender.  I personally do not know the history of the white flag but I do have personal experience with the idea of surrender.  We’ve come to a place in our culture that we have been taught that surrender is about giving up.  The truth is that surrender is not about giving up in totality; it’s about giving up the struggle.  The self-imposed sense of struggle is what comes with release.  Some people find it incredibly freeing and others find it to be the scariest experience on earth and both are probably true.

Want to know the unfortunate part in the equation?  At a time, like the diagnosis of a chronic or life-threatening illness, when surrender would be a time save, an energy booster, and a path to clarity we hold on to what we believe is best because our skewed views of the world have worked so well in the past.  The reality is that’s not true, but it’s a good illusion, and now with the diagnosis the idea of surrendering (based on our old definition) feels like defeat.  I guess I’m wondering why we have to exhaust every possible idea before we surrender.  Couldn’t we use our personal resources better?  I heard a song yesterday and a line in the song caught my attention, “we’re all one phone call from being on our knees”.  What comes to mind when you hear those words?

I think surrender is an easy concept.  Imagine yourself swimming upstream against a strong current, can you feel the drain, the exhaustion, and energy battling you every stroke of the way?  Now imagine yourself swimming downstream with the current…notice any differences?  Surrender is that turns the tide for you.  It’s those times when you are looking for answers and everything seems to be going against you…ask yourself why that might be?  I know from personal experience I feel that way when I believe I know better than my doctors, my own common sense, or my body.

Surrender shouldn’t be a negative.  It shouldn’t be fraught with shame.  Discard the old connotations of the white flag and raise a new flag for surrender; I think it will carry you far!

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

Who Holds the Greater Faith?

Over the past year I’ve become more and more intrigued by poetry.  I didn’t much like it while in high school, and I avoided any and all poetry courses in college…so what’s the difference?  Maybe it’s maturity (ha ha), a clearer understanding of writing styles, or a greater appreciation for all things creative.  I’m inclined to go with the latter since it seems to be the path I’m on these days.  Poetry is simply one more creative medium or language that those facing a health challenge can use as part of their treatment regimen.

One of the great poets of our time is David Whyte.  In a poem I was given during a recent workshop, Whyte states the following, “The universe is holding its breath waiting for you to take your place”.  That’s such a powerful statement.  Can it be that the Universe has more faith in us than we do?  Would you ever believe that your faith could be trumped by the Universe?  I think there is a bigger question for us all to consider and that is, “How long do we expect the universe to hold its breath for?” 

We all have a place that is rightfully ours and can’t be filled by any other person on the planet.  True some get a bit misguided along the way but eventually they find their rightful place and all is well; at least that’s the hope.  How do you see your life since your diagnosis?  What is it that you believe the Universe is holding its breath waiting for you to do?  You’re not bucking for sainthood so don’t think about it in terms of miracles unless you are one of those who walk the earth believing you are a miracle.  What would it mean for you to take your rightful place?  Are there times in your life when you have allowed the universe to exhale because you did show up?  What would it take to do it again and again, only this time with a health challenge as part of the equation?

It’s poets like David Whyte that get us thinking deeper about our lives as spiritual beings have a human experience.  The great poets throughout history have been dropping bread crumbs forever and we haven’t been hungry enough to eat those crumbs…I think the diagnosis changed that forever!

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

What Kind of Dealer Are You?

Now don’t get all excited…the word dealer here is meant as in a card dealer, not a drug dealer.  Just wanted to set the record straight from the beginning; although the response if you thought it was the latter would have been funny.  Getting back to matters at hand.  Picture yourself in a casino and you sit down at a table to play Blackjack or Poker.  The dealer deals the cards and you bet your hand based on the information you have and for some even their intuition.  How good are you at betting on the hand you’re playing and what if you were the dealer?

I was recently reading the book “The Little Book On Meaning” by Laura Berman Fortgang.  It’s a pleasant book, no big revelations, but Fortgang’s stories are entertaining.   I read the following quote and felt it was something everyone needed to hear, “How many times do we misinterpret the things we see and hear in our lives?  How often do we stack the cards against ourselves through out interpretation of events, robbing ourselves of what can be meaningful in the name of fear?”  Powerful, don’t you think?

So let’s put you in the seat of the dealer.  Even though casinos want you to believe everyone has equal chances of winning, the truth is in most cases the house wins.  If that’s the case, then let’s make you the house.  How do you want to play your hand?  If your hands (literal and figurative) weren’t tied what would you be doing differently today than you did yesterday?

The biggest question from the quote is how will fear alter your betting strategy?  How will fear cloud your vision so you don’t play your best, in fact you probably are throwing your opportunity away because of the fear.  This is the time in spite of the fear that decisions and actions have to be set in motion.  There’s always time for fear, but a limited time to move toward health and healing.  If you don’t short circuit playing the hand of fear it will snowball into something beyond your control.  Let’s keep things in check, take the upper hand when dealing the cards and play like your life depends on it!

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

When It Hits…It Hits Hard

Last week I made reference to what I called “teachable moments”.  I’ve had some very interesting conversations with colleagues and other students from school and the conclusion is that those “teachable moments” are around us every moment of the day.  The real question is how open are we to letting them walk through the door. 

During my recent 10 day training in Oregon, the facilitators had selected readings that we read aloud as a group every day.  It was what they called a choral reading…creating harmony with the spoken voice.  We had been doing this for a week when a poem called “School Prayer” by Diane Ackerman was on the agenda and I got stopped in my tracks.  The words were so profound, to me, that I had to stop and take note of the meaning.  What increased the poems impact was the surprise factor.  We were standing there, a group of 35 people, reading this poem and I felt like I had been hit with a baseball bat.

Facing a health challenge I’m sure you know all about being hit with a baseball bat, but this is different because this is for your own good.  Moments like these are the ones that may catch you by surprise and throw you off balance, but they are the “teachable moments” that will renew your spirit and catapult you to a new level of understanding.  These are the moments when you get a glimpse of being totally awake; it may seem scary, but isn’t living a full life supposed to be a bit scary?

Many facing a chronic or life-threatening illness resort to the philosophy that it’s better to insulate oneself from those baseball bat moments because the diagnosis was so devastating.  However, the insulation prevents you from capturing those moments of intense emotion and connection to others.  Physical, emotional, and spiritual insulation prevents you from experiencing everything that life (including the illness) has to teach you.  Don’t built the fort so strong that nothing can get through because those “teachable moments” are the ones that can and often are the ones that will save your life, both figuratively and literally.

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

Mind Control

Did you see the show “60 Minutes” last night on CBS?  The story is about how humans are using their minds to what will someday allow them to control their bodies.  The story started with a neuroscientist, Scott Mackler, who at age 40 was diagnosed with ALS (Lou Gehrig’s Disease).  As a result he suffers from “locked in syndrome”.  His brain is completely alert but he can’t move any part of his body except his eyes.

Through an invention called “Brain Computer Interface” (BCI), Scott can communicate through a computer.  He wears a skull cap with electrodes that captures his thoughts.  The information is then sent to a computer.  He communicates by thinking of letters that make words and then the computer serves as Scott’s voice. 

Next they showed a woman who had a stroke and also suffers from “locked in syndrome”.  The researchers implanted a computer chip/receptor in her brain and then she’s hooked up to a computer via a plug on her head.  By thinking thoughts she can move a mouse on a computer allowing her to communicate, play music, and answer e-mail.

The hope is that in the future this technology will allow paralysis patients, stroke patients, ALS patients, MS patients and any who lose function in their body to recapture some of what they lost.  The biggest part of this process for Scott Mackler according to his wife is that it gave him some independence.  Being able to communicate with others has allowed him to return to work where he can work on further advancements of this type of technology.  Being able to communicate with loved ones is vital to quality of life.  There’s no more guessing because the person using the device is truly thinking the thoughts.

I know we all get a bit freaked out by technology,  but the truth is as we age and there are more toxins in the environment illness will continue.  Inventions like the “Brain Computer Interface” won’t reverse the disease but works to thwart the immensely limiting impact on the patient’s existence.  It may only be a glimmer of hope today, but fire was started by a spark and this is a huge spark!

Posted in Caregiving

Continuum of Care

Welcome to Caregiver Friday!

While I was away at school I had the opportunity to discuss caregiver issues with a woman that provided services for caregivers of dementia patients.  As the discussion continued I realized that the continuum of caregiver/wellness partner roles is quite diverse.  The population is aging so we know that there will be an increase in the amount of illness in years to come requiring new battalions of caregivers.  The care continuum cares for patients from birth to old age.  The wellness partners of the 21st century are more informed about the patient’s condition, but there is still a huge gap in services and understanding of caregiver needs.

During my conversation with this service provider I realized how entrenched and stuck we can become in our points of view; that’s true for caregivers as well as providers.  The important thing to consider is the fact that the continuum requires different things at different times.  Having the capacity to be flexible is critical to the well-being of the caregiver.  One of the key components that we have to all be mindful of is not to project our own opinions on to that of you, the caregiver.  It’s easy to want to fit you, the caregiver, into a neat little box but the truth is that caregiving is messy.  Although at times it’s physically messy; that’s not what I’m referring to at this time.

I’m punctuating the complex aspects of caregiving and how confusing the experience can be for you.  If you feel that you’re not being served by your service providers bring it to their attention.  As someone who spent years providing services to caregivers; it’s easy to fall into the role of the all knowing.  The truth is that caregivers are as individual as finger prints.  You require and deserve custom tailored solutions address the physical, emotional, and spiritual aspects of caregiving. 

Don’t give in to the temptation of being a yes person.  Make your needs known and understand that wherever you fall on the continuum as a caregiver is exactly where you should be!