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

Loss Is Inevitable…Suffering is Optional

When mental health professionals talk about grief they are usually talking about grief in response to death.   It’s the most common form of grief and the most widely acknowledged in our society.  Western culture doesn’t like to talk about death but following the death of a loved one the grief hits and takes center stage in the life of those still alive.

I’m thinking about grief as it relates to loss.  We all experience little deaths throughout our lives that don’t result in our ultimate death.  Loss is inevitable in our lives.  We experience loss from the moment we’re born.  At the time of our birth we leave the safety and warmth of the womb only to be brought into a world that is cold, loud, and overwhelming.  We begin experiencing loss in that moment.  When I think about the progression of life and how and when grief kicks our butt I think of a graph.  Loss is a constant in our lives.  We get hurt, we get sick, we fail a test, our friends move away, etc.  It’s when a major life event intersects with these daily losses that we experience grief.

Think of the day our were diagnosed with your illness.  The intersection of the diagnosis along with all the other stresses creates an emotional and spiritual tsunami.  Our interpretation of the event is what creates the suffering.  It’s our attachment to something we believe we had and deserved that causes our attachment to something that was fleeting all along.

We live lives that are filled with loss.  How we learn to befriend those losses is what determines our level of spiritual stamina.  It’s our ability to understand that loss is part of life and doesn’t detract from all the good things in your life.  The problem comes when we keep trying to fill the holes created by the loss and it’s like filling a hole that has no bottom. 

How do you handle loss?  Are you prone to suffering?  Would you like to change that world view?  Check out the website for more information…

Posted in Caregiving

We’re All On an Odyssey

Welcome to Caregiver Friday!!

Over the past few months I’ve been spending time reading and studying about Odysseus, the story of “The Odyssey”.  If you haven’t explored it, it’s a wonderful story and so applicable to life today which to many would be a surprise.  The lessons are explored by many authors who take their turns exploring the meaning behind the story and how it applies to their particular discipline.

Tonight I finished Norman Fischer’s book, Sailing Home, a Buddhist perspective of The Odyssey.  I found the book to beautifully written and the meditations were good ways to understand the work on a deeper level.  At the end of the book Fischer talks about the point in our lives when we “come home”.  For many facing a health challenge you may be thinking this is the point of death, but he takes it much deeper because his perspective is that there is no such thing as death, only life in the moment.

The part that caught my attention and that I want to share with you is a story he tells about a friend who is a hospice social worker.  The hospice worker asked Fischer, “How do you prepare for death?”  He finally answered the following, “So hospice work is about living, appreciating living, at life’s most crucial and poignant moments.”  Can you think of anything more eloquent? 

Caregiving is about sharing those tough moments at “life’s most crucial and poignant moments”.  It’s the ability to share a moment with someone when you are both at your most vulnerable.  There’s an intimacy that develops even deeper than any physical intimacy you could imagine.  As a caregiver, to develop the capacity to be completely naked emotionally and spiritually is an amazing journey.  It’s a gift that provides you and the person you’re caring for hope in love, togetherness, and compassion.

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

What if Everyone Came Clean?

We live in a litigious society.  When it comes to errors made in medical settings, the stories of the legal battles would blow your mind.  The bottom line is no one likes to be lied to and we all know that cover-ups aren’t a hit with most people.  The lessons we learned as kids about telling the truth should apply in the medical arena, but risk managers, hospital administrators, and insurance companies are terrified of how it will effect the bottom line.

Yesterday I mentioned that studies show that when medical personnel make an error when the provider told the patient about the error and apologized the number of lawsuits dropped dramatically.  The truth is that we all want to be treated with civility.  We put our faith in our healthcare providers and if something goes wrong we hope that they could at least show us the courtesy of being honest.  In most cases I don’t think the medical personnel would hold back but they are ambushed by those who pull the purse strings and that’s where everything goes haywire.

There are new strategies being tried with incredible results.  This past Tuesday, the Wall Street Journal had an article titled, “Hospitals Own Up to Errors”.  One example of the changes being made were shared as follows, “The University of Illinois center set up a specialized service in 2004 to help staff communicate with patients and families after harm occurs.  Since 2006, the center has had a policy of fully disclosing medical errors, and swiftly offering a financial settlement.  And patient-family members sit alongside staff on a board charged with overseeing plans to prevent errors.”  That’s a fresh take on this whole situation.  There is transparency and as patients it’s what we want and deserve.  When our emotions make our decisions things become contentious and that doesn’t reverse the harm that has occurred or change how medical facilities interact with patients.

I feel it’s our right to always ask our providers for the truth.  If they are truly the professionals they purport to be it shouldn’t be an issue.  If they are more concerned with their reputation and their insurance carrier than we have bigger fish to fry.

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

Too Many Deaths from Errors

I was reading an article in the Wall Street Journal yesterday about how hospitals are owning up to their errors.  I think this is great because studies show that the big malpractice suits come not because of the malpractice, but because the physician/hospital didn’t acknowledge the wrong nor did they apologize…I guess they’re making progress.

The statistic in the article that was staggering was that “Medical errors kill as many as 98,000 Americans each year, according to the Institute of Medicine, a government advisory group.”  That’s a big number, one that we really need to be conscious of each and every time we go to the doctor, get a new prescription, have a procedure done, or most of all enter the hospital. 

The problem is that we’ve been indoctrinated not to ask questions.  New drug dispensing systems like bar codes that have to match the drug container with the wrist band on the patient are important steps in saving lives, but it isn’t enough.  We need ongoing training to be ramped up.  There are states in the country that don’t require continuing education for healthcare professionals.  The only reason most of them do take continuing education is that is lowers their malpractice insurance. 

It’s critical that patients and caregivers become savvy about the medical profession.  Books such as Jerome Groopman’s, How Doctor’s Think should be the first book that people go buy following a diagnosis.  In fact I believe the newly diagnosed person should drive (after the shock wears off) from the doctors office to their favorite bookstore to buy that book.  We have to begin to understand how doctor’s think so we can ask better questions, challenge them when necessary, and keep them accountable.

Do yourself a favor, become informed, keep a watchful eye for omissions and errors like anything related to sanitation issues, and most of all have a voice.  Be empowered to ask questions because the last thing anyone wants is to be one of the 98,000 Americans who die annually from medical errors.  You have a part to play in this equation.

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

Are You a High Roller?

A friend of my parents recently quit her job.  The circumstances aren’t important, what is important is the conversation that followed.  My mother asked her if she was going to take the COBRA option which allows you to pay out-of-pocket for your health insurance.  In most cases you can do that for 18 months unless you have extenuating circumstances.  She replied that she had just gone to her doctors for routine physicals, had her dentist visit, and is feeling fine.

Let me explain the idea behind insurance because it’s a bit odd.  When you purchase a health insurance policy you are betting that you will indeed have some type of illness or accident and the insurance company is betting that you’ll be happy and healthy and they’ll simply collect their premiums.

The truth is that no one ever thinks they are going to get sick.  I took my cats to the vet today for an annual exam and vaccinations and in walks the vet wearing a wig.  She’s obviously going through cancer treatment…did she plan on this?  Could she have foreseen that she would be diagnosed with a health challenge this great?  If you look at the bankruptcy courts in our country a high percentage of people filing for bankruptcy are doing so because of medical bills.

I realize that not everyone has the funds to pay for their own insurance, but then it’s important to find other means of coverage.  Until healthcare reform is finalized if you have a lapse in coverage of one day between insurance policies any new provider can deny you for having a pre-existing condition.  All it takes is a 24 hour lapse in coverage and you could be in hot water.

There are the types of conversation you should be having with your legislators as they discuss and argue about healthcare reform.  It only takes one cell to go haywire, one text while driving, or a myriad of other mishaps to set you in the poor house.  Think ahead, plan ahead, and take every precaution possible…you’ll thank me.

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

Thomas Merton and Suffering

When I stumbled upon the works of Thomas Merton I was amazed at how prolific he was as well as the impact he could have with such a short life.  His is one of the best auto-biographies because it doesn’t follow the time line you would assume from a man considered to be one of the world’s greatest theologians and mystics.

I’m particularly interested in different religions views on suffering because it seems to be part of the process for those facing a health challenge.  The suffering isn’t necessarily physical, although it often is, but emotional and spiritual suffering have to be taken into account when discussing the role suffering plays in our lives.

Merton said, “Indeed, the truth that many people never understand, until it is too late, is that the more you tryo to avoid suffering, the more you suffer, because smaller and more insignificant things begin to torture you, in proportion to your fear of being hurt.”  That’s a powerful quote and one that seems counter-intuitive to logic.

How could suffering increase the more you try to avoid it?  I’ve been sitting with this for a while and then I just felt this deep sense of sadness.  Suffering increases as you try to avoid it because the avoidance is and of itself suffering.  There is a struggle that gets put into play the moment you try and keep what you think is suffering at arms length.  I know the idea of embracing struggle seems absurd, but by bring it in close you take the wind out of its sails making the situation more manageable.

No one wants to suffer, especially when facing a health challenge.  We each suffer in our own way and that journey of embracing suffering is highly personal.  How will you decrease your level of suffering?  What if you simply redefined what it means to suffer?  How would you face your health challenge differently if the focus were on wellness and healing instead of what you perceive to be the obstacles to wellness.

Bringing your suffering in close allows you to acknowledge how heroic you are on your journey to wellness.  Give yourself every advantage and leave the suffering to the martyrs who believe that suffering pays a dividend…we know better!

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

Invisible Injuries

Welcome to Caregiver Friday!!!

I want to start this post with two simple words…”Thank You”.  I wanted to start with these words because it’s the two words most caregivers/wellness partners don’t hear often enough if at all.  I’ve sat in hundreds of caregiver support groups where the biggest complaint is feeling unappreciated.  I know you want to hear “Thank You” from the person you’re caring for, but I hope that my sincere appreciation tides you over till you get what you need.

So why am I talking about appreciation?  It’s because not feeling appreciated or valued is one of the invisible injuries caregivers experience.  It’s not an injury like a broken wrist, but one of the spirit.  It’s the injury to your good intentions.  It’s the injury that often can’t be seen, heard, or expressed either because of fear or not having the means to express the injury. 

Invisible injuries are not unlike those who face invisible illnesses; no one knows and yet the pain whether it be physical, emotional or spiritual is very real.  It’s not like you wear this invisible injury on your sleeve so no one is asking you about it including the medical providers.  The focus is on the patient, but all too often it’s you, the caregiver, who needs the attention.

How can you make the invisible visible?  The most important person for the injury to become visible to is you.  You have to identify, acknowledge, and express the pain.  Support groups specifically for caregivers is a good place for this to happen.  You have a story and the untold story is the injury.  To heal it requires that your story be told, heard, and validated.  Your life is made up of many stories, but this one, the invisible one, is the one that causes psychic pain. 

Don’t walk around with an invisible injury.  Allow it to rise to consciousness and be expressed so that you can heal and your role as a caregiver doesn’t get contaminated.  Again, from the bottom of my heart I say, “thank you” for all you do.

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!