Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, Empowerment, Healthcare, living with chronic illness, Living with Illness, newly diagnosed illness

Still on the Journey…With Renewed Passion

I’ve been working in the healthcare field for over thirty years.  I’m a mental health provider, focused on the impact illness has on our physical, emotional, and spiritual lives.  When I started this blog, my intention was to share my insights and experiences as both a provider and a patient.  If you’ve read any of my blog posts or gone to my website (, you know I’ve had an autoimmune disease most of my life.  In addition, I’ve nursed many animals with varying degrees of illness and written about their journey.

Over the past eighteen months, I’ve been enrolled and graduated with a graduate certificate in Health Humanities and Ethics.  It has opened my eyes to many unanswered questions for both patients and providers about their experiences in healthcare.  My classmates came from all healthcare arenas.  Our discussions punctuated the challenges of working in healthcare because of finances, policy, research, insurance, access, and a host of other dilemmas.  It has expanded my understanding of healthcare and made me a more informed and sensitive provider.

As I relaunch this blog, I wanted to share the direction I’m headed.  This year I’ll write about my experiences personal and professional.  I’ll explore how we can address doctor/patient relationships for optimal health.  I’ll share reviews of books related to both patient experiences and those of healthcare providers (educationally and in practice).  One of the key areas I’ll address this year is the concept of “legacy”. What are we leaving behind?  How will we be remembered?  What are we doing to improve our own situations and those of others?

I’m excited to explore these topics.  I’ll be sharing interviews with individuals showcasing personal experiences of illness as well as the handcuffs felt by many providers as they try and reconcile the realities of medicine with their intention for entering the field.

I hope you’ll join me on this journey and participate in the conversation.  Your voice is important because it’s about what we have in common, not what divides us (sound familiar).  I want all voices to be heard around the table because this is how we can advocate for what’s needed, what’s right, and what heals!

If you’d like to share your story (patient or provider), please email me at!

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

Holding the Positive

No matter your age, gender, ethnicity, etc. it’s important to have a tribe.  I’m a fiber artist so I love all things fiber.  One of the community website is the Men Who Knit (MWK),, website.  Male knitters from around the globe post pictures of their work, ask technical questions and share resources.  Little did any of us know that we’d be sharing more than just knitting.  A young man known to us as Jason1978 shared in the spring that he was fighting metastatic testicular cancer.  His positive attitude was infectious and we all believed he’d be able to fight the illness.  Unfortunately, that wasn’t the case and Jason died this past weekend. 

What amazed me was not only his own positive attitude, but the well wishes and healing energy sent to Jason from the entire MWK community.  Once Jason’s partner posted the notice about his death I would visit the post to see who had responded and overwhelmingly the words were gentle, kind and full of love.  They offered comfort and support to his partner Jonathan who was with him till the end.  The frightening part of all this is that Jason was only 30 and his partner Jonathan a mere 22.

We’re never prepared for people to die much less die at such and early age.  It’s amazing that his caregiver/wellness partner is so young and so ready to take his place beside someone he loved.  Having a community that continuously check in and wants to know how you’re doing, even when the news isn’t good is powerful.  It brings you out of the depths of isolation and fills your soul with a sense of belonging.  Knowing that you are in the consciousness of others means you have touched their hearts and tattooed your name and your energy in their soul.

It’s sad that such a young life ended.  I commend the Men Who Knit community for being ready to support Jason every step of the way.  They even put out a call for knitted squares that were sewn together to make a healing blanket for him.  Once all the squares were in and the blanket completed it was shipped to Jason in Vienna.  The global community heard the call and responded.  Isn’t that the type of community you want for yourself when facing a health challenge?  Seek it out and feel the love; it will do you a world of good and will brighten even the darkest days.

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

A Piece of the Inaugural Address

Last night I was watching Oprah’s show, the day after President Obama’s inauguration.  The two guests I was most taken by were Jon Bon Jovi   and Presidential historian Doris Kearns Goodwin.  If you have never read any of Ms. Goodwin’s works I strongly urge you to read her accounts of some of our most famous Presidents.  As the panel was talking they were asked about their favorite moments and each referenced a quote in the inaugural speech.  I realized that even though I watched the speech I missed parts so this morning I printed the speech for review.

Reading the speech I landed on a phrase that caught my attention, “The time has come to reaffirm our enduring spirit; to choose our better history…” .  Can you feel the power in that phrase?  The idea that you can choose a better history is an affirming concept.  It puts you, the person facing a chronic or life-threatening illness in the driver seat.  It promotes the idea that you must seize every moment, every decision and every experience because they are the legacy left behind when you leave this world.

In order to “choose our better history” means you must be present when walking in this world.  It requires that you be in your body, connect the mind, body and spirit on a conscious level and make the connection between cause and effect.  As the person in charge your decisions dictate your actions.  It also means that you are responsible for your actions so make them wisely.  It’s not about correcting mistakes you may feel you’ve made in the past; it’s about starting a new chapter.  It’s the freedom to change the course of your biography to a healthier, more life-affirming direction.

I couldn’t have stated the concept more eloquently so I’m thankful to and for our new President.  Print out the speech and see what resonates for you.  Take it beyond the state of the nation and apply it to the “state of you”.  What was particularly powerful for you?  What struck a nerve?  What will you do differently since being touched by those powerful words?

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

Every Person Has a Legacy

It was very sad to hear that Paul Newman died Friday after facing cancer.  Looking at all the news stories it’s amazing all the ways that Paul Newman had come into our lives.  The most obvious is his film career and his marriage to Ms. Woodward.  He’s also noted for race car driving and if that weren’t enough a brand of foods promoting healthier ingredients.  He started camps for children with life-threatening illnesses.  That’s a pretty big legacy.

When diagnosed with an illness one of our thoughts is often “How will people know that I was here?”, or “What mark will I leave on the world?”  These are important questions but aren’t tied to how much money you have or what you donate to causes.  Your actions can serve as your legacy.  When your words and actions match you leave a lasting legacy.  When people who know you believe you are an authentic person, that’s a legacy.

Often one of the legal parts of a life-threatening illness is a will.  The will distributes your earthly assets.  What about another type of will, a living will that doesn’t refer to medical treatment, but the values you hope you leave behind.  Leaving behind or stating clearly while you’re alive the values you hope to have demonstrated is a powerful gift for those in your life.  It can be the foundation for others to base their lives.  It’s a powerful legacy because it lives in the hearts of the people you care about.

If you have the money and want to build a wing of a hospital or put your name on a building, that’s great.  If you want your loved ones to know the importance of a good work ethic, kindness, compassion, family and love then all you have to do is share your hopes and reflect on your actions.  It’s very powerful!

Posted in after the diagnosis, authenticity, Community, coping with life threatening illness, Having a Voice, Integrity, Living with Illness, Partnerships, Personal Conviction, Relationships

Your Circle of Influence

Ever wonder how many lives you touch?  Many believe that only those of a certain status can influence the life another.  This past Friday, Professor Randy Pausch lost his battle with pancreatic cancer.  His “Last Lecture” became an Internet phenomenon.  Then we had the opportunity to see him on Oprah.  If that weren’t enough his “Last Lecture” became a NY Times Bestseller.  He inspired many people both sick and healthy to live life differently.

If you’re facing a health challenge your circle of influence is greater than you realize.  You may not have a television special done about your life, but is that how we measure the influence or the mark we’ve made on the world.  Every day we have contact with people and it’s our inner nature that leaves an indelible mark on the lives we touch.

So maybe you’re not a TV personality, so let’s focus on who you are.  Think about who you have contact with on a regular basis and what part you play in their life.  It could be as simple as helping a child who has fallen at the playground get back up.  Perhaps you decided after you’ve retired to join the Peace Corps or Americorps or began volunteering in your community.  Perhaps in a year like we’re in now you’ve decided to put on your political hat and become part of a campaign.  You may have chosen to save the lives of animals who without adoption would be euthanized.

It’s not about your degree of fame that determines your level of influence; it’s the conviction in your heart that is the beacon of hope.  If nothing else, when you are facing a health challenge, hope is the key.  When you’ve been diagnosed with an illness you do have a choice about how you will live your life.  You can live life isolated and as a victim or you can see what being a part of a community and striving to make the most of each day can do for your health and the health of others.

You have more influence on the world than you can imagine.  You share your values with those at the grocery store, coffee shop and daycare.  By sharing who you are and living life in partnership with others you rub off on people.  We all want to make sure we leave a mark on the world.  If you don’t listen to Randy Pausch’s lecture or read the book or watch the You Tube of his talk, think about the change you want to see and be in the world.  Don’t wait till you’re better, doing something incredible will improve your health.  It doesn’t have to be a world wide web sensation…keep it simple and the impact will be huge.

Posted in Emotional Health, Spirituality and Health

Illness and Anxiety

Waiting can be the most anxiety producing element of any diagnostic process.  Most who are having surgery are scheduling the surgery and that gives you too much time to think.  There is something to be said for the emergency surgery where your brain doesn’t get in the way by throwing all these life scenarios in front of you giving you too much time to ponder the negative.

I received a call today from the mother of a client.   The message basically said that the client is in a state of perpetual “death anxiety”.  I can understand the fear of undergoing surgery and then waiting to come out of anesthesia hoping for the best but preparing for the worst.  In the meantime I often wonder how is the client living his life?

The wake-up call is the doctor saying you need surgery.  What do you think about during the time between notice that you need surgery and the actual surgery?  This young man is telling me that his biggest fear is leaving behind a young child.  If that’s the fear then what are you doing to day to instill all the “right stuff” the child will need throughout his life?  What values are you demonstrating?  Do you light up every time the child walks in the room?  (these are the things the child will remember)

The truth is that until the surgery is done we sit in the “waiting room of life”.  This holding place is not as pleasant as the green room of a TV set, the food in most cases won’t be very good.  It’s at these times that we are reminded about how small we are in the Universe.  The truth is that in the grand scheme of things we’re insignificant, except to those we love and care about.   That being said, isn’t it important to make sure that every day is spent fulfilling your dreams of generativity?  What’s your legacy going to be?

Obviously the hope is that you’ll have a long time before your legacy is reflected upon, but don’t think that even if you’re healthy that your legacy isn’t being created on a daily basis.

You may think that distraction works to alleviate the anxiety.   The truth is nothing can take it away, but by sitting with the fear and understanding what’s under the fear will help reduce its intensity.  Let’s face it, we’re not going to be conscious of our death.  The Ancient Greeks felt that the way to the Good Life was to meditate on your own death, and yet we try and keep it beyond arms length.

What would happen if it came in a little closer?  What can you do today to reduce your anxiety by being mindful of the moment your living in, right now.  Don’t throw NOW away!