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

Life on a Continuum

Welcome to Caregiver Friday!

Hope you are recovering from your Thanksgiving feast (if you live in the US).  Now that you’re satiated I thought we could start the holiday season with some perspective.  I like to think that life is inclusive of all and I want to clear up what may have been some misconceptions and set the record straight.

If you’ve read my previous Caregiver Friday articles or other accounts of caregiving it’s easy to get a skewed view of caregiving.  Personally, I’ve tried to express the wide range of caregiving activities, but I’m going to take it out of the shadows and make it the center of today’s conversation.

When someone is labels themselves or is labeled by others as a caregiver the immediate visual we create is that of a person caring for someone bedridden, severely challenged physically, on a host of medications, maybe even needing round-the-clock care.  As humans we seem to fair better with extremes.  We like the black and white and often leave out the gray.  I’m going to explore the gray.

Earlier in my articles I made reference to you, the caregiver, as a wellness partner.  To start this dialogue I invite you to come up with other phrases or descriptive scenarios that represent your life as a caregiver.  This is what I believe, the moment someone in your life is diagnosed with a chronic or life-threatening illness you become a caregiver/wellness partner/(your descriptive phrase).  I know some of you are playing the role of the Doubting Thomas, but I assure you it’s true.

Yes, there are those of you caring for someone who needs 24 hour attention.  There are those of you who are attending to all the activities of daily living for the patient in their lives.  Indeed, we have a huge group of people who are devoting their physical and emotional resources to helping someone in their life get well.  This is only one side of the story.

I can tell you that there are a lot of people who pick up the phone and make regular contact with their loved one so they know they aren’t forgotten or isolated.  There are those of you who read a magazine article and think it would help the patient with their journey to wellness so you send them the article.  There are those of you who have chosen to become educated about the illness, preparing yourselves for what may come down the road, reducing your own fear and in turn reassuring the patient.  There are those of you who are praying for the patient to get well.  Some of you may create regular play dates with the patient so they get out and maintain their social connections.  Others of you may have created phone trees that relay information on the patients health alleviating the family from having to call the world.

Don’t you see…these are all degrees of caregiving.  Caregiving isn’t only the hands-on activities.  It’s about keeping the patient in your consciousness and seeing how your relationship with the patient is best served in their time of need.  Don’t discount your contribution because no one does this alone.  We are social creatures and need the love and support of any and all who are willing to participate.

Here’s a quick example in my own life.  I’ve got family and friends who have faced a host of illnesses.  When I hear about their diagnosis I have offered to be available 24/7, 365 days a year if they need to talk.  I emphasize that this is not an offer I make off-the-cuff.  The offer is sincere, genuine and I don’t take that responsibility lightly.  I make sure the person has all my phone numbers and if they have a cell phone to put the number is their phone.  I don’t make this offer to look good, I make this offer because these people are near and dear to me.  Once I’m aware of their health challenge I look for information, interviews, and resources that may help them.  I’m on call in real life and in my heart.  Am I a caregiver?  Of course I am, even if I’m not in the same town as the person who is ill.

The continuum is vast, encompassing a host of roles and activities.  Just like illness have stages or degrees of challenge, so does caregiving.  Think of where you are on the continuum and honor that role.  Honor the love and compassion you offer.  Honor the actions you take to lessen the burden of another.  Honor the decision you make to stay connected and an active part of the patient’s life.  Honor all your caregiving/wellness partner activities.

I’d love to hear how you honor your role on the caregiving/wellness partner continuum.  Share your story and let’s honor all you do on behalf of those you love!

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

Everybody Loves A Parade

Happy Thanksgiving!

The Macy’s Thanksgiving Day Parade has started and I’m sure many of you have started working in the kitchen.  Some of you were smart and made reservations allowing your time to be spent with others without the muss and fuss of cooking but reaping the rewards of great food.  The football games will be on this afternoon, there is a chill in the air (I live in Colorado) and there are hundred of commercials trying to get me to set my alarm for 3:30am for the bargains that begin in stores at 4am.

I know it’s a bit cliche to ask “what are you thankful for” only on this day…but that’s what we do.  Let me make it easy for you; if you woke up this morning be thankful.  Isn’t that the easiest thing in the world?  I know that when facing a health challenge the word thankful is often difficult to articulate.  I don’t think it’s something that has to be spoken.  I believe it’s something that you can feel or experience internally and be at peace with that feeling.

During the holidays when food is such a big part of the celebrations you may experience some disappointments.  Due to medication or other treatments your taste buds may not be cooperating fully so find what you love most in the world and treat yourself.  This can be a day of indulgence without being gluttonous.

Sharing time with others is often the best medicine.  If you feel up to it make contact with others.  It may not be ideal to host a large crowd so hopefully someone else will play host so you can enjoy the day and retreat to a quiet place if you need to rest.  The hope is that you’re thankful for knowing your strengths and abilities.

The truth is that being thankful is just about being conscious of those everyday things in our lives.  It’s about taking the time to be conscious of those things we enjoy.  I wish you and your family a Happy Thanksgiving.  Thank you for inviting me into your life on a daily basis so that I may partner with you on your journey to wellness.  Thank you for being my inspiration and allowing me to serve the world with my life’s mission.  I’m sending you healing energies.

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


It’s the day before Thanksgiving (in the United States) and I just got back from the grocery store.  I was surprised that the lines were relatively short.  I guess the big push will be after 2pm when people begin leaving work.  It’s the official start of the holiday season and if you thought the political ads were bad wait till you see what retailers have planned for you as we approach Black Friday.

There is a frenzy in the air that’s palpable.  If you let it; the frenzy will consume you.  When faced with a health challenge the desire or maybe the need is to act like everything is “normal”.  The truth is that you’re a bit more fragile than you were before the illness.  If your immune system is compromised in any way those big sales where you get up at 4am may not be in your best interest.

We all have a tendency to over extend ourselves during the season.  Obviously the economy is on everyone’s mind, but so should your physical status.  Know your limits.  Don’t do more than you’re capable on any given day.  Plan your day so that you keep focused and can achieve your goals without draining all your physical and emotional resources.  Make it even easier by shopping online.  Black Monday is when the retailers offer great deals online and you can avoid the rush and the germs, what a bonus.

This is not the time to prove anything to anyone.  Keep your eye on the prize…your health.  Take lots of deep breaths and release the anxiety of the start of mass chaos.  Thanksgiving is a time of reflection (and of course, turkey), so use the time wisely.

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

You’ll Know When It’s Time

There are times when watching television that I wish I were a television writer.  Every so often there are poignant moments that really capture the true essence of an idea.  These moments, although far and few between, are the springboard or catalyst for eliminating the feelings of isolation associated with illness.

I was watching an old episode of “The West Wing”.  Throughout the episode there are flashbacks to the beginning of President Bartlett’s (played by Martin Sheen) presidential campaign.  During the primaries Mrs. Bartlett (played by Stockard Channing) talks to one of the key campaign personnel.  Their discussion is about how poorly the candidate is treating the staff.  The candidate’s wife says to the campaign director “He’s not ready yet, he’s terrified”.  The campaign director asks “Will he be ready?” and the the wife responds “You bet he will”.   Later in the episode the campaign director’s father dies and Bartlett shows up at the airport to console the campaign director.  Bartlett then turns to his chief of staff and says “I’m ready”.

I know it seems like a big set up for the simple phrase, but I thought it really captured the process that many go through following their illness diagnosis.  There is the initial shock and fear and that may last some time.  The important thing is that at some point you’ll know when it’s time to make a conscious choice to get well.  You’ll know when it’s time to make a conscious choice to make your health your primary focus, and not just some treatment you have to get through.  It will be a moment that you’ll remember forever because it is one of the biggest proclamations you’ll ever make in your life.

I can’t tell you when it will happen or how it will happen, but I can tell you it will happen.  It will happen because it has to happen.  Your mind, body and spirit need to be in alignment so you have the best odds possible.  Even those whose illness is irreversible or terminal will have this moment because the proclamation is a legacy to be left to your family, friends and community.

Don’t sit around waiting for that moment because it creeps up on you and then hits you like a bolt of lightning.  Once it hits there is a new sense of purpose that ignites in the soul.

Have you had that proclamation moment?  What was it like?  What have you done differently since that moment?  Please share your stories so that those who haven’t had that moment yet have hope that it will arrive for them too!

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

Are People like Weebles?

I used to love the commercial for Weebles.  Remember the saying, “Weebles wobble but they don’t fall down”.  Pretty good for a guy that doesn’t have any children.  I can still hear the song in my head, of course ask me what I had for lunch yesterday and I may struggle to remember.  Why do Weebles wooble but don’t fall down?  I think it’s an important question.  No joke, I’m not actually talking about the mechanism, but the idea.  How is it that American toy makers can make a toy that understands the concept of resilience?  How is it that a toy that shouts resilience gets lost on grown-ups when we have a health challenge.  Why all this talk about Weebles?

The truth is that there really are people who wobble but don’t fall down.  I met a young man this weekend who is the Weeble personified.  He’s a fifteen year old young man who has a host of illnesses.  He’s not battling one disease, he’s battling at least three that I could count plus a host of food allergies.  He carries around a fanny pack with an epi-pen because he is prone to anaphylactic shock.  He’s had four colonoscopies starting at age 7.  When he told me about the colonoscopies he followed up with “you know, you’re not supposed to have one of those until you’re 50”.

Here’s a young man that has license to feel bad about the cards he’s been dealt.  Here’s a young man who has a “get out of jail free” card for depression or at least sadness.  Here’s a young man who in spite of tremendous challenges walks around with a smile on his face when he has every right to be pissed off at the world.

The truth is that this is his normal.  He really doesn’t have a memory of being well and maybe that’s the key.  Adults who have been health for 30, 40, even 50+ years and then get sick have a memory of wellness and that anchors us to a reality whose ship has sailed.  Trust me I’m not saying that it’s easier to deal with illness, especially long-term illness if diagnosed at a young age, but we have to look at why we’re so anchored to a reality that is now a memory.

I’ve been very involved over my career in the work surrounding Post-Traumatic Stress Disorder (PTSD).  Many diagnosed with an illness suffer from PTSD because the diagnosis alters their entire world and coupled with the treatment traumatized to a state of hyper-vigilance, night terrors, a life of dread.  Those working with PTSD used to talk about healing PTSD.  At one point the conversation shifted from healing to resiliency.  The idea that we can bounce back from a terrible, life-altering experience and resume something that resemble our lives prior to the diagnosis.

I say we all take a lesson from this young man.  If I could extract the resiliency gene from his DNA I would and then share it with the world.  All I can do is be conscious when I’m in the presence of someone like this young man and be mindful of his experience, which he shares freely.  It is then my duty to share this with you because he is living proof that life with an illness although at times inconvenient can be joyful and full of love.  I am honored to share this story with you because he is the beacon of hope that life really is for the living so sitting around in despair is counter-intuitive to wellness.

Tell me your Weeble story, I know you have one.  We need to hear them to continue on our journey to wellness.

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

Purpose in Life

Welcome to Caregiver Friday!

I went to bed last night thinking about what was bubbling to the surface regarding caregivers and caregiving.  I drifted off to sleep and this morning woke with a focus on an audio book I’m listening to by Victor Frankl.  Victor Frankl wrote “Man’s Search for Meaning”, one of the most recognized titles of the twentieth century.  This audio book is, “Man’s Search for Ultimate Meaning”  (kind of like products in the store that are new and improved).  I’m almost finished listening to the Cd’s and what jumps to the head of the line in my consciousness is the idea of our “purpose in life”.

I don’t think that most of us or any of us were planted on this earth to be caregivers.  I’m not talking about the caregiving related to parenting, but the caregiving/wellness partner experience of caring for someone sick or injured.  It’s a byproduct of an occurrence not a lifelong ambition.  Now that I’ve said that out loud I’m going to pose a tough question to you…”What’s your purpose in life?”

The interesting thing is that you can interpret this many different ways.  Some feel that it’s about the career they are meant to pursue.  I’d like you to dig a little deeper.  Not only “what’s your life purpose?” but “What do you put in the category of purpose?”

Yesterday I took an online test to rate or discern my “purpose in life”.  It wasn’t a surprise that happiness is my purpose in life.  Then the follow up question is how do I achieve happiness?  That’s a better question because it gets to the guts of the matter.  Personally, connections both familial and social bring me happiness.  Having deep intense friendships brings me happiness.  Having the capacity to express myself through my art brings me happiness.  Being of service to others whose personal resources have been depleted brings me fulfillment and that leads to happiness.

The important thing for me in my personal disclosure is that clarity that things don’t bring me happiness.  I talk about buying this 1.7 million dollar house I saw a few weeks ago (just a joke), but it wouldn’t make me happy.  It would increase the amount of cleaning I have to do and that wouldn’t make me happy.

Where does this leave us?  As you move through your day as a caregiver begin to cultivate a picture of your “purpose in life”.  If it’s about deep relationships then how do you accomplish that even when the other is sick?  What does it mean to deepen that relationship?  Maybe it’s during this time of vulnerability that you both share at a deeper level your fears, hopes, dreams, ambitions.  It doesn’t matter just share and if you do then you’ll be fulfilling your “purpose in life”.  If your “purpose in life” is to show compassion to others then it’s important to get in touch with the frustration associated with caregiving and enter a state of grace.  It’s unfortunate that stress, frustration and waiting are all part of caregiving, but set it aside and see why it triggers you and you’ll most likely have an epiphany.  The epiphany will be that life is fragile, health is fragile and in turn we are all fragile…that’s the point of compassion and grace.

I could go on and on but I don’t want to steal your thunder.  I would love to hear what you believe is your “purpose in life” and how you are fulfilling that destiny.  Keep open to any and all possibilities.  When you are triggered by something see how you can reframe it to one of the areas that fulfills your “purpose in life”.  I’m always here if you want to chat!

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

How Young Can You Achieve Health Expert Status?

We’re so accustomed to talking about adults who are diagnosed with chronic and life-threatening illnesses.  It’s true that as the population rises and our life expectancy increases there will be an increase in illness diagnoses.  Adults have life experience that helps them achieve expert status on their health challenges.  They have the resources to find information, process it and then make informed decisions.  Is it possible for kids to make those same decisions?

I recently read an article by the Associated Press about, Hannah Jones, a 13 years old British girl who is refusing a heart transplant.  At the age of four she was diagnosed with leukemia and then was diagnosed with cardiomyopathy.  She understands the risks of having and not having the surgery and seems to have come to an informed decision that is in alignment with her experience.  She’s taken control of her life and is supported by her family.  Of course there has been some tirades by the medical establishment as they prepared to launch legal battles.  They don’t or didn’t believe that a 13 year old could make this a decision of this magnitude.

I believe the person that really reinforces Hannah’s strength, courage, and conviction is Dr. John Jenkins.  “Dr. John Jenkins, a pediatrician and chairman of Britain’s General Medical council standards and ethics committee, said children who have lengthy illnesses become ‘experts in their own condition quite early in life”.  That’s the biggest honor and endorsement for allowing a young person to make their own health related decisions.

It’s obvious that Hannah has given tremendous thought and energy to her health.  She’s endured numerous treatments over the years and finally she has settled on her own definition of “quality of life”.  The amazing thing about this young girl is the clarity of her decision.  She has an old soul and that’s what gives her peace of mind with the decision.

It’s definitely a difficult decision for her parents and medical providers, even if they support her decision.  Feeling helpless is distressing.  As a medical provider that feeling of helplessness brings up a host of issues.   As a parent it summons the courage to support what may be or is an unpopular decision.

When do you feel that you’ve achieved expert status on your own health?  How did you get there?  Are there any shortcuts you could share?

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

Isn’t Being a Teenager Hard Enough?

While at a conference this weekend I spoke with a mother about her daughter’s diagnosis.  Her daughter is 15 years old and is facing a lifetime with an autoimmune disease.  I don’t know about you but I can think of plenty of other things I’d rather be doing then thinking about an illness.  Isn’t it hard enough being a teenager without the obstacles of illness?  There are so many developmental milestones that one achieves in their teens and I don’t believe that treatment regimens is one of them.

Let’s look at the reality of the situation.  Teens are self-conscious about their looks, their friends, their activities and throwing a health challenge in the mix escalates their issues.  Everyone is trying to be cool (if they even still use that word) and last I heard illness isn’t cool.  Friends and dating become the center of one’s rite of passage to adulthood but self-doubt and isolation may be the result of an illness diagnosis.

I know that we can’t discuss fairness.  I am just highlighting this stage of life because by nature it’s filled with strife.  Of course no one should get ill, but it happens.  It makes these kids (they’re kids to me) face realities that many adults don’t even want to face; and yet most teens do it with grace and courage.

I guess what I’m saying is that if you meet a teen that has a health challenge, give them a little extra support.  Find ways to be emotionally available to them.  Remember what being a teenager was like and then throw a health challenge in the mix and figure out how you would have coped; maybe you will have an insight you can share.  Try and understand chaos theory because that’s at the root of a teenager with a health challenge.  The truth is, just be you.  Be present.  Be real.  Don’t try and take over their lives; they have to find their own north star and navigate to safety.  It is possible for you to be part of their navigation strategy, but teenagers are resilient and they will find a way to make it work.

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

Is the Body so Frightening?

I’m out and about a lot.  I interact with people all the time and I’m sensitive to what I see out in the world.  I see the looks and stares people make to those in wheel chairs.  I observe the faces of those who see someone who has suffered a burn.  I take note of those who pass a woman wearing a knit cap to keep her bald head warm.  We’re a culture that is caught up in how people look.  I’m not sure if it’s the difference that makes the gawk or the fear in their own hearts about what if this were them.

I can tell you that “the body is the body”.  There is nothing to fear except fear itself (I believe someone famous said that).  Unless someone has something contagious there is no need to fear another who due to illness or accident have an altered body.  I’ll tell you a quick story and then I’ll play the other side of the fence for a moment.

Many years ago I was in graduate school and the first day of class walked in a guy who had obviously been in a fire.  His face and hands were quite altered.  Like everyone else I did a double take.  It wasn’t out of horror or disgust, but probably pity.  I felt bad that this individual had to live his life with the prejudices of our culture of beauty.  Talking to him over the first couple of weeks of class I had an amazing realization, he didn’t pity himself.  In fact, he was grateful for being alive.  He shared his story and explained his road to recovery.  His goal was to work with burn victims to give them hope that beauty is truly more than skin deep.

When we meet someone who has an altered physical appearance, what is our fear?  The first fear is what if that happened to us?  The other is, can I get past the physical and what will it take to get me there?  I was at a conference hosted by the National Psoriasis Foundation.  Dr. Brian Sperber talked about the history of psoriasis and how those with the disease were treated in ancient times.  He shared that many with psoriasis were thought to have leprosy and banished to colonies never to be heard from again.  Others with psoriasis were thought to have these lesions as a sign of the devil or of being a witch and were burned at the stake.

Obviously we don’t continue those practices today…at least not literally.  The question is how do we interact or treat people whose bodies have changed?  What misunderstandings do you have about someone you’ve seen in the store and without knowing made a judgment.

It’s courageous for those facing body image issues due to illness or injury to walk proudly in this world.  Trust me, they know people are staring, but courage will trump fear.  If your body hasn’t been impacted by illness or injury be conscious of your good fortune.  If you are facing those challenges, change will only occur as long as you’re comfortable in your own skin (figuratively and literally).  When the body issues rise to the surface, get some support from someone who understands.  As someone with severe psoriasis I’ve had people afraid of contagion, afraid to touch me or turn their heads when I caught them staring.  It can be  a long hard road, but once you achieve a level of comfort you’ll stop radiating the vibe of fear and get on with you life.

Posted in care for the caregiver, Caregiving, Community, coping with chronic illness, coping with life threatening illness, Relationships

As Humans What Are Our Limitations?

Welcome to Caregiver Friday!!!

Every so often I meet a caregiver who makes me rethink the idea of the superhero.  I keep waiting for this person to transform themselves right before my eyes (that is if they aren’t accustomed to changing close in a phone booth) and automatically be imbued with powers beyond imagine.  If that were truly the case there would certainly be a lot less suffering in the world.  The truth is that when you engage in caregiving you don’t do it off the cuff, as a second choice, as something to pass the time.  You take on the caregiving role out of love, friendship, respect and the belief that your energy is part of the wellness or healing equation.

The truth about caregiving is that the hours can be long, if not physically at least mentally.  It can consume your life.  It can cause you to worry beyond the boundaries you thought possible.  It can leave you feeling powerless at the times when you need to feel in control.  It can be heartwarming and joyful as a means of sharing an intimate experience in another’s life.  It can expose qualities in you that you weren’t aware of or thought were dormant.  It allows you to exercise your faith in human nature, connection to a force greater than yourself and an admiration for science you may have never known.

So what happens when you think your hardest “isn’t enough”?  I hear caregivers say “if only I could have___________________(you fill in the blank).  The truth is your hardest will always be enough, in fact it will most likely be more than enough.  The human condition is strong and fragile at the same time.  We’re given opportunities and experiences that continuously change our lives.  How can you know that your hardest is more than enough?  When you can be in the sacred space of caregiving and be totally present in that experience.  I know it can be hard to sit with pain, despair, frustration and a host of other emotions, but that’s when you’re hardest is more than enough.

I’ve spoke about caregiving and identity, and true your self-concept will change throughout the caregiving process.  It’s also true that we are fundamentally consistent in how we process information and our emotions.  Don’t you see…your hardest has to be enough because that’s all you have.  It’s not like syphoning gas out of someone else’s car.  You are who you are and accepting that will bring relief and immeasurable confidence in your actions, decisions and beliefs.  Having limitations is not a bad thing, in fact for many caregivers accepting their limitations probably saved their own lives.

It’s through out limitations that we begin to rely on community.  We come to understand that constructing 20 foot high walls, trying to protect yourself and the patient from the outside world is counter-productive.  When we accept our limitations we begin to look for those who have complimentary skills and gifts.  We begin to see that caregivers as a community are greater than the sum of its constituents.

Your hardest will always exceed expectations.  Don’t try and become something your not; that leads to disappointment and despair.  Understand that the gifts you have to offer of support, compassion and love, will serve the person you’re caring for as one more arm of their journey to wellness.  You’re an integral part of their lives, while at the same time understanding that you too have a life that is parallel to the caregiving process.

I can tell you that your hardest may not always be popular and that’s when you most need to sit with those feelings.  Limitations keep us in the human world.   We’re not born to be superheroes, we’re born to be part of a community and relationships that enhance our lives.  When health challenges enter the picture although not ideal, have to be confronted.  I know it can be all-consuming; that’s why understanding that humans have limitations proves in and of itself that your hardest is all we have and is more than enough!