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.


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 Caregiving

Walk a Mile In My Shoes

Welcome to Caregiver Friday!!

As I take my daily bus ride to and from work during my stay in San Antonio, I think about all the stories I hear from people on the bus.  They aren’t speaking to me, but no one seems to protect the privacy of the cell phone conversations, so I have lots of stories.

I’ll hear a story and wonder what would I do in that particular situation.  The difficult part is that I don’t have all the information, only snippets.  When we don’t have all the information our brain’s natural inclination is to fill in the gaps with thoughts based on our own interactions.

How does this apply to caregiving?  Even if you haven’t been diagnosed with a chronic or life-threatening illness we’ve all be sick or injured at some point in our lives and know what depending on others is like.  On the other hand, not everyone has taken care of someone who has been dependent.  True if you’re a parent that’s all you do, but it’s different when an adult is dependent because you’re often dealing with issues of guilt and shame on the part of the patient.

So what about empathy?  It’s often for others to understand the stress, pressure, and angst that often accompanies caregiving.  It’s difficult for some people to know what it’s like keeping the plates spinning in the air.  Most of the caregivers I’ve met over the past twenty plus years have worked at great lengths to ensure that the patients needs are met and they are safe and secure as they tackle the health challenge.

It’s for this reason that I strongly recommend that caregivers attend a support group.  The rooms of the support group become your sanctuary, your confessional, your oasis in the desert.  It will be a place where all the negative thoughts you may have or feelings of resentment are acknowledged, validated, and possibly even applauded. 

The members of your support have walked a mile in your shoes, heck they may have gone a marathon in your shoes, so you ‘re in good hands.  It would be wonderful if empathy were abundant, but it’s not and it’s often a difficult skill or gift to teach.

Take care of yourself and be with those who are empathic to your situation.  It will definitely improve your peace-of-mind and will let you know you’re not going crazy!

Posted in Caregiving

If Ashton Kutcher Said It; It Must Be True

Welcome to Caregiver Friday!!

I was watching ABC’s Nightline last night and saw Cynthia McFadden interview Ashton Kutcher.  If you’ve followed Kutcher’s career aside from the movies and television production, you’d know a lot about his commitment to using social media.  He’s one of the most prolific social media celebrities in the world.

One of the things I particularly enjoy is the background story of these noteworthy individuals.  We all know about his rise to stardom from modeling and That 70’s show, but how many know about his personal life?  This is why these types of interviews are important; they show him as a real person not some Hollywood concoction of good look and money.

Did you know that Ashton Kutcher had a twin?  Did you know that his twin brother was born with Cerebral Palsy and a heart condition?  Did you know that his brother Michael needed a heart transplant at age 13?  Well now you know and more importantly it’s his life experience that I want to shine a light on today.

During the interview McFadden asked Kutcher about his relationship with his brother and the guilt he felt having not only a brother, but a twin with health challenges.  Aside from the guilt there’s always the feeling of pity that enters the picture, but during their talks, Kutcher’s brother Michael said something profound, he said, “Don’t feel sorry for me because it make me feel less than”.  These are phenomenal words of wisdom.

This is one of those times when I’m going to ask you to look in the mirror and ask yourself, “Do I feel sorry for the person I’m caring for?”  It’s a common human emotion and if you’ve listened to as many stories about health challenges as I have over the past twenty-four years then you’d know that pity and feeling sorry comes up a lot in the dialogues.

What if you didn’t feel sorry for the person with the illness?  What if by relieving yourself of feeling sorry you were also releasing the patient from feeling less than?  It makes sense that when you feel less than you feel helpless and hopeless short-circuiting the healing powers of the body.  So how can you abandon feeling sorry for the other person?

The other part about abandoning feeling sorry for the person you’re caring for is the freedom you’ll experience.  When you don’t feel sorry or pity for the other person you can be more present with them.  You’re relationship will improve because it’s not about having an unequal balance of perceived power (your health).  It’s not about feeling superior because you’re healthy.  It’s about being healthy and with that health partnering with the patient to live with the most quality of life possible.

We think of Ashton Kutcher as this movie star, but I think of him as a guy who has had extraordinary life experiences with health issues and has used these pearls of wisdom to become a more empathic human being.  His devotion to humanitarian causes is proof of this empathy.

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

I’m sure, I’m not sure, I know, I don’t know

Remember when you were a kid and you picked a daisy and recited, “he/she loves me he/she loves me not?”  I always felt like this was leaving the decision to chance although the same could be said for a Magic 8 Ball.  We are drive to desire surety and yet there is no such thing in this world.  I used to love the end of Oprah’s program or articles where she asks people, “What do you know for sure?”  I used to think it was a brilliant question, now I just think it’s arrogance.

As you get a little older and friends/family begin having health issues maybe you engaged in conversations about what would happen if you ever were diagnosed with a chronic or life-threatening illness.  The tendency is to get heroic and stoic and awfully sure of oneself, but I don’t believe that’s the real you; I think it’s the unknowing persona.

The truth is until the doctor says those infamous words, “I’m sorry to tell , don’t have any idea how you’ll react.  Our experiences trigger feelings and thoughts and it’s at that time that we begin to formulate our true beliefs about facing a diagnosis.  It follows that saying, “Don’t judge a person till you’ve walked a mile in their shoes.”  The idea that you can be so sure about how you’ll react is preposterous, not to mention a bit funny, verging on hysterical.

My hope for each and every person is that you never have to come face-to-face with a health challenge.  Unfortunately, that’s not likely in today’s world, but it’s a good goal.  What do you in the meantime?  I say live life to the fullest.  On a more intimate scale I would hope that you’d begin the process of self- exploration.  Begin the process of going deep so you know, understand, and acknowledge your values and beliefs.  Make conscious your life experiences and how you’ve handled different situations in the past and keep them alive and well in your repository.

Until you’re in “it” you don’t know what you’ll do, but give yourself every advantage should that challenge present itself and live your life to the fullest.

Posted in Caregiving

Are Others Empathic Enough?

Welcome to Caregiver Friday!!

Years ago when I was doing trainings for healthcare/complimentary health providers it was important to understand their level of empathy.  It was clear that they had the knowledge to help their patients/clients, but could they really understand the other’s point of view?  I started thinking about this because we had a snow storm starting Tuesday evening and we got 24+ inches of snow.  I was prepared so there was plenty of food, but it meant that we’d be in the house for at least a couple of days.  Started wondering about cabin fever, and for those of you caring for someone who is sick or injured I’m sure this is something that creeps into your consciousness on a regular basis.

The trainings we provided to the healthcare community were called empathy trainings.  The goal was to create an environment where they would experience, on the smallest of scales, the challenges of those they were serving.  One example was to attach popsicle sticks to their fingers and then ask them to open a jar simulating someone with extreme arthritis.  Another example was to put vaseline on a pair of glasses to simulate cataracts and then have them try and get around.  Obviously it’s not the real thing, but they were able to begin the process of understanding.  Where does this fit in for caregivers?  We had them rotate through being called by the empathy participants to receive help in most would consider to be everyday tasks…not to easy.

I guess the truth is that anything can be a learning experience if you frame it that way.  Being homebound, not by choice, can create feelings of physical, emotional and spiritual claustrophobia.  In places where this type of weather takes away the phone and/or power lines it leaves you isolated.  All of these give rise to anxiety that many caregivers experience feelings trapped in their homes unless arrangements are made for an alternate caregiver. 

There’s no way to for others to go through an empathy training, but it would be nice.  Having others be able to walk a mile in your shoes would bring about different conversations and actions.  It would provide greater understanding for what goes on within you on a daily basis and encourages others to reach out more often.  Empathy is good because it evens the playing field and brings people to a deeper level of understanding.

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

You Just Don’t Understand

Is it possible to speak the same language as another person and not be understood?  Could it be in the realm of possibility that when you share your story others look at you like you’re an alien?  For those who aren’t facing a health challenge understanding the obstacles faced by those with health issues is foreign.  It’s may be easier to describe your symptoms, but describing the impact they have on your inner life is devastating.

Hearing about someone experiencing pain, fatigue or nausea is easy to understand.  Even if you haven’t experienced these symptoms yourself, you can see the physical impact they have on the person with the illness.  You can visually see the slow movement, the lack of appetite and the angst that brings to someone’s face.  What you can’t see is embarrassment, humiliation and defeat.  These are internal experiences that impact how the person diagnosed with a chronic or life-threatening illness face on an ongoing basis.  For many it comes in waves, there are good days and bad and the trouble is you can’t schedule them to fit your schedule.  They creep up on you like a stalker forcing you to confront these challenges at times when you may be feeling the worst.

Others want to help, but what you usually get from them is sympathy which for many is translated as pity.  Pity doesn’t help!  Pity is the one message that sends those with a health challenge deeper in their shells or brings them out outraged.  Because understanding the experiences of the person with a health challenge can be difficult to comprehend, workshops have been created that utilize “empathy exercises”.  Empathy exercises recreate situations for the health person that emulate the experience of the person who is sick.  Some examples of empathy exercises are: putting popcorn in your shoes and then having you walk simulating someone with neuropathy, neurological pain; taping a couple of fingers together with Popsicle sticks and then try and cook a meal or open a jar, simulating the challenges of someone with advanced arthritis.  These are just a couple, but there are plenty of others.

These exercises have been created so that we can develop a common language to describe what it feels like to have daily obstacles as a result of illness.  They have been developed to create a sense of empathy, allowing the healthy person to walk a mile in the shoes of someone facing an illness.  Of course it won’t be exact because you can’t create an empathy exercise for the emotional and spiritual impact of an illness.  The hope is that the healthy person takes their physical experience and begins to deduce the emotional and spiritual ramifications of the limitations.  This is how we begin creating a dialogue.  Co-creating a language to communicate is helpful and validates the experience of the person facing the health challenge.

Any ideas for an empathy exercise?