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

The Heroes You Meet Every Day

You never know whom you will meet on your journey to health and healing but I it may surprise you.  I’m constantly amazed at the bravery, tenacity, and perseverance of those facing chronic and life-threatening illnesses.  It can be a lonely life facing a health challenge, but connection is possible and certainly encouraged.  I love reading stories about those who are proactive about getting better or getting well; it’s heartwarming.

One of the things about reading magazine articles, blogs, listening to interviews, etc. is the ability to connect with these individuals without ever meeting them.  I always loved Michael J. Fox, but I have a new love, respect, and connection to him after reading his book, “Always Looking Up”.  There are so many stories that bring us closer to others, and it’s those stories that excite us, encourage us, and move us forward on our journey.

One of the most beautiful lines I heard in response to hearing someone’s story about bravely facing illness came from a viewer of a television show.  The person’s response to the woman facing cancer was, “I don’t know you, but I’ll never forget you!”  Doesn’t that just capture the essence of connection?  Doesn’t it provide you with a sense that you’re not alone?  Doesn’t it make you feel supported, acknowledged, and strong?

I just completed interviewing artists with life-threatening illnesses, and although I did meet them; I’ll never forget them.  They’re courage, their stories, and their authenticity are definitely models for living a good life.  My time with these heroes was a life-changing experience and I’ve been doing this work for 25 years; that’s epic!

Who will you meet in person or through some other means during your day?  How will their story impact your life?  What’s the take away from their story and what will you do today that’s different from what you did yesterday.  For more information about facing chronic and life-threatening illness go to or email me at

Posted in Emotional Health

Is “One” Really the Loneliest Number That You Ever Knew?

Last night I attended a group meeting where we discuss different topics related to one’s emotional life.  The topic for the evening was “aloneness and loneliness”.  It’s a topic I’m familiar with personally, but it’s something I think is part of the human condition and the topic never really leaves our lives.

Being diagnosed with an auto-immune disease as a child left me feeling lonely.  I was the only one I knew who was facing a health challenge and socially it left me at odds with myself and my social development.  I remember trying to avoid any discussion of my illness and didn’t know where to turn.  Doctors weren’t a support and although my grandfather had the same health challenge we never discussed it…I don’t think he ever dealt with it on an emotional or spiritual level.

As we went around the room last night many if not most of the group, when discussing loneliness, spoke about isolating.  Members of the group continued sharing and the word isolation kept coming up and the more they said it, the stronger my gut reaction was saying, that’s not it for me (even though that’s what I had said at the beginning). 

My A-ha moment came when about the 10th person talked about wanting to be a part of something, a group, a sense of belonging and that’s what combats loneliness.  In that moment, I realized that when I’m the most lonely is when I’m disconnected from myself.  My feeling lonely is a sure sign that I’m not paying attention to my own needs.  I’m trying to fill my life with events, and people, but not necessarily focusing on my heart and soul.

There was some talk about filling your life by making plans and that combats loneliness.  It reminded me of a story from my childhood.  I have a younger brother and he would chase me (don’t ask me why or why I participated).  I would yell to my mother, “Mom, he’s chasing me”, and she would reply, “Stop running and he can’t chase you”. 

That was my reaction to the idea of overcoming loneliness by making plans.  What happens when we stop running, when we stop making plans to fill our day, when we schedule our days so full hoping to be filled up?  I’ll tell you what happens, you go home exhausted and the loneliness creeps in because you never really dealt with it.

Being diagnosed with a chronic or other life-altering illness can be very lonely.  Very few of us have the opportunity that big stars like Michael J. Fox,  Suzanne Somers, or Montel Williams have where they wrote a book about living with their illness and then travel the country meeting others who are living the same experience dissipating the sense of loneliness. 

This is the benefit of support groups.  They give you a place where when someone says, “I know how you feel”, the odds are good they’re telling the truth, not simply placating you.  I’m a big proponent of support groups but there is a caveat.  The group needs to be facilitated by a trained and competent facilitator.  Nothing can leave you feeling lonelier than a group that has driven far off course and you’re still standing on the road wondering where everyone else went. 

How do you combat loneliness?  How do you foster a connection with yourself?  I’d love to dialogue with you about this.  Simply hit the comment button and think of this as your own support group where you’re not alone and hopefully that results in reducing your sense of loneliness.

Posted in Caregiving

Once Upon a Time

Welcome to Caregiver Friday!!

We all remember those four famous words that start every fairytale from our childhood.  We remember the magic and wonder those stories provided and if you were like me you read the stories over and over again.  As we got older we were introduced to books and autobiographies in particular.  These stories told of famous people who made huge strides to overcome adversity in their own lives and the story showed us how we might accomplish the same thing.

As researchers study storytelling (yes, people study storytelling) they found that there is a subset of autobiography called a pathography.  A pathography is a story someone tells about their own illness.   Famous people are writing them all the time about the diseases they’re battling.  These stories bring attention to the illness in hopes of reaching out to those who feel isolated, but also to try and raise money for research and services.  Some of the famous pathographies are written by Michael J. Fox, Montel Williams, Suzanne Somers, Paul Monette, and Lance Armstrong just to name a few.

So what’s missing in the pathography category?  You guessed it; the story of the caregiver.  In over twenty years of serving those facing a chronic or life-threatening illness and their caregivers I’ve only seen a handful of stories written by the caregiver.  Unfortunately, many of them are written after the person they were caring for has died.  Where are all the stories about what it’s like caring for someone on a 24/7 basis.  Isn’t it time that we hear the flip side of the patient’s story so that we get a more complete picture of what’s happening in the arena of health and healing?

You may not believe that your story is worth a book; but I assure you your story is worth telling.  It’s why I believe support groups are so important because the story gets told.  Your voice about your experience becomes part of the collective consciousness and that huge.  So how will your story be told?  Maybe it’s not through a book; video is making big advancements and you can get a personal video recorder for just over $100.  It would be like making your own documentary…that’s powerful.

Start telling your story so that the world knows the illness experience from the caregiver perspective.  You’ll be doing yourself a favor not to mention how it will help those who follow you on this journey.

Posted in Caregiving

Partners In Crime

Welcome to Caregiver Friday!!

We hear and read about the stories of famous people who are fighting a particular illness, but what about the caregivers?  Why don’t we hear about the families of the famous person?  There have been few interviewed, Tracy Pollen, Michael J. Fox’s wife has certainly been one to speak about her experience with Parkinson’s Disease.  She’s one of the few, but there are hundreds-of-thousands of caregivers whose stories aren’t told and it’s about time.

You, the caregiver/wellness partner, is a partner in crime in the “Caper of Health and Healing”.  It’s true, you are a partner in crime in this mystery tour.  Some may wonder if you’ve been hiding in shadows, but the reality is that you’ve been right there, front and center, with the person you’re caring for and offering support and encouragement.  It’s as if you’ve been wearing Harry Potter’s cloak cape, and to your credit this gives you the opportunity to look at the big picture. 

It shouldn’t be a surprise that your vantage point is unique.  You get to see the patient and the illness from multiple angles.  You see the patient at the best and the worst.  You know when the patient has been good and bad  about following their treatment regimen.  You can offer support and healing energy.  You are there as a voice for the patient when they may really want to be anonymous or feel intimidated by their medical team.  Ever feel like you’re a multiple personality? 

As a partner in crime you have to watch out for one thing; the desire or enticement to collude with the patient in denial or self-defeating behavior.   It’s your place to give the patient what we in coaching call “the caring truth”.  When I was in graduate school my family therapy professor told us, “Pat them on the back before kicking them in the ass”.  Those words have served me well as I work with people who are often resistant or defiant to treatment plans. 

Once again I want to thank you for your caring, support, and compassion.  You are a team, like Batman and Robin, Cagney and Lacey, and Lilo and Stitch.  Know your attention and encouragement are a huge component in the patient’s journey to wellness.

Posted in Caregiving

If Michael J. Fox Says It; It Must Be So

Welcome to Caregiver Friday!!

I love Michael J. Fox.  I think he’s a great actor, but more importantly I believe he’s been an incredible inspiration not only to the Parkinsons community, but to all those facing a chronic or life-threatening illness.  His interviews, television special, and books ooze with inspiration and encouragement for living your best life possible with an illness.

One of his recent interviews for his new book, A Funny thing happened on the way to the Future, he discussed many topics related to his health but he was asked a very important question about his support system.  He was asked, “If you had any advice for caregivers, what would it be?”  I thought this was a provocative and insightful question and you could feel that the whole caregiving community was sitting on the edge of their seats waiting for these words of wisdom to fall like manna from heaven.

Fox said, “Let us (those with the illness) do as much for ourselves as we possibly can”.  Could the answer be any simpler?  He was asking caregivers/wellness partners to pull back on the joy stick of controlling the situation and allow the person you’re caring for to navigate their way a bit more on their own.

We’ve become a society that doesn’t like pain whether it be physical, emotional, or spiritual.  This leads us to jumping in too fast at times short-circuiting the process and in this case that means treating the patient as a bit more helpless than they may actually be.  There’s nothing wrong with allowing the patient to get to the point where they need to ask for help or guidance.  Allowing them to do as much as possible is empowering and reinforces their capacity for health and healing.  It also allows you to take a breath and relax (if that’s even possible) one moment longer than usual.

Michael J. Fox wasn’t saying that you should allow the patient to struggle, fail, or reverse any progress made on their journey to wellness, but he is saying that the diagnosis alone doesn’t constitute incapacity.  It’s a delicate dance and it is difficult territory to navigate.  This is one of those times when you may need to turn up the sensitivity on your intuition factor and give some slack on those reins and see what happens naturally.  You know you’re well prepared if help is needed, but follow the advice of Michael J. Fox and I believe you’ll experience a better relationship on all levels with the one you’re caring for.

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

It’s All About How You Frame the Experience

As usual I was watching ABC World News, now with Diane Sawyer, when a story came up about a soldier, Lt. Colonel Tim Karcher, who had been injured in Iraq.  He had lost both his legs and by the time he returned to Walter Reid Medical Center he was dying of an infection throughout his body.  His wife gently told him that if he needed to “let go”, she’d be able to raise the family and go on.  He survived and is being fitted with prosthetics so that he can walk again.  He’s hoping to return to the service in some capacity.  That story alone speaks about choices and how we frame our experience, but that wasn’t the turning point for me about his experience.

Being interviewed he calmly turned to the interviewer and said, “You can decide if it’s a life ending experience or a life changing experience”.  In a moment a flash went off before my eyes and I got it.  The message was bigger than any billboard I’ve ever seen, bigger than the Jumbotron at a ballpark, and deeper than any previous quests for peace.  He challenged each of us facing a health challenge to make a decision on the road we’ll follow.  We’re at a fork in the road and the choice is clear, sit ont he couch moaning and groaning about how life is unfair, or get up, get out and live each day with whatever vim and vigor you have left, or hope to cultivate down the road.

There’s certainly a place for self-pity following an illness diagnosis, but when it defines you there is a sense of hopelessness and that plays mean tricks on your body.  Your body is trying hard to get well and if you don’t give it your full support then you’re abandoning your own body, your own self and I don’t believe that’s your intent (well or sick).  How will your diagnosis be a life changing experience for you?

That soldiers one line makes what patients have told me for years, that their diagnosis was a gift.  It was a gift because they made it a life changing experience.  They took the illness and made lemons out of lemonade.  They put up with all the treatment regimens in hopes that their lives would be better to some degree on the other end, even if it meant a lifetime of treatment.  When the diagnosis is a life changing experience there are choices about how life changing and how it will change your life, but let’s say it opens your eyes to possibility.  Maybe it gives you the freedom to do something you’ve always wanted to do but didn’t have the guts to do…until now.

I recently listened to Michael J. Fox’s book, Always Looking Up, and even with all his fame and fortune, he wouldn’t have had many of the life affirming experiences he’s had without the diagnosis.  He has made his Parkinson’s Disease a life changing experience for him and his family.  He is living proof that it can be done.  If you look deeper and closer to your own personal experience I believe you’ll find people in your own sphere who have done the same. 

Your choice, life changing or life ending…I know which I prefer!

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

When Do You Know the Time is Right?

I’m still blown away by the Public Service Announcement about mental illness,, but I’ve been thinking more extensively about why is now the right time to bring this message to consciousness?  The truth is that we’ve been pushing mental illness to the background because it’s misunderstood.  Even in this day and age people don’t know what bipolar disorder is until you say it’s what used to be called manic-depression.  The common belief about schizophrenia is that it’s multiple personality disorder, not sure how that happened.  Is this the right time for that public service announcement because we’ve made advances in treatment or public opinion?

Look at physical illnesses like Parkinson’s Disease, until Michael J. Fox announced his diagnosis people didn’t talk about the disease.  Organizations that emerged to support Parkinson’s patients gained increased credibility when the Michael J. Fox foundation put money into research, advocacy, and support.  Was it Michael J. Fox’s job to bring the disease to the general population’s consciousness?  It certainly brought people out of hiding because they now had a visible community for support. 

I’ve noticed that in the past two years, during the warm weather, there has been a dramatic increase in Walk-A-Thons for various illnesses.  In most cases, it brings out those impacted by the disease both directly and indirectly.  Organizations create public relations campaigns to educate the public in hopes of receiving donations.  These walk-a-thons are very public announcements about illness.  Those who walk self-identify to the world their personal health challenge.  As I look back at the notifications I get, I don’t recall ever seeing one for a mental illness organization; they’ve all be physical illness organizations.  This get’s back to the question, “When is the time right?” 

Are we becoming a more tolerant or accepting people?  Are we at the point where most of us have come in contact with someone who is facing a physical illness or mental illness?  Does that personal experience make us more compassionate?  Are we willing to create conversations about the challenges we or our loved ones are facing?  If you have any thoughts on this please share them so we can expand the conversations!