Posted in Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, overcoming adversity, Relationships

Releasing Your Secrets Can Be Your Gateway to Freedom!

We all have a vision of ourselves that serves to provide us an identity. Cooley, a noted sociologist, devised the “Looking Glass Self”. His theory says that we see ourselves from multiple angles. He believed we see ourselves in one way, then there are the ways others see us and finally how we perceive others see us. It’s like standing in the dressing room of a clothing store and seeing yourself from all angles. The amazing thing is that he didn’t account for the secrets we hold.

The releasing of secrets can be your path to freedom. If you look at those facing addictions; it’s the secrecy that holds them prisoner. Releasing the secret provides a path to recovery.   However there are times when the focus of our secrets is not connected to shame, but the belief that we’re sparing others from experiencing the same pain you are facing the diagnosis of a chronic or life-threating illness.

John Churton Collins, a British literary critic, said, “If we knew each others secrets, what comfort we would find.” The secret of pain or symptoms prevents those closest to us from feeling taxed, or at least that’s what you believe. You look around at all those who have been caring for you and you ask yourself, “Can I burden these loving and supportive folks with one more request?” However, keeping those secrets can seriously jeopardize your health.

I understand that you believe these secrets are protective of the relationships you have with caregivers, but the truth is these secrets strain the relationships. Caregivers are there to help and when you keep secrets about pain and suffering caregivers may experience a sense of guilt for not having the mindreading abilities of The Amazing Kreskin.

The other aspect of keeping secrets about your health is that you have the chance of having minor symptoms become a serious matter that could compromise your life. When facing a chronic or life-threatening illness symptoms are not minor. They are your body’s way of saying pay attention to me. They are the outward signs that you need to change the dialogue in your head to a dialogue with your medical team. Keeping secrets from your medical team can result in severe consequences.

The real question is, “Who are you really protecting when you don’t share your secrets of pain or symptoms?” In most cases you’re protecting you. Having these symptoms or pain means something is wrong and as long as you keep it a secret it doesn’t really exist or you believe these symptoms will pass if you give it time. Why are you willing to sacrifice your well being when sharing your symptoms can bring relief and actually cut-off further damage to your body.

Secrets are good when you’re trying to do something nice for someone like a birthday party, but when it comes to your health, secrets can be your demise. Seek freedom and release those secrets!

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Posted in care for the caregiver, Caregiving, Emotional Health, Relationships, Self-Nurture

The Caregiver Experience…How You Can Channel the Amazing Kreskin?

Do you remember the Amazing Kreskin? He was best known for, what we believed was, reading minds. So many of us would see him on television and wonder how he was able to achieve these monumental perceptions and knowledge of what the subject was thinking.

If we were able to read minds life would be so much easier. The capacity to anticipate the needs of others would be a saving grace. Understanding what others need doesn’t have to be a circus sideshow; it needs to be rooted in communication and honesty.

When facing a chronic or life-threatening illness, especially when going through treatment, there are needs and desires that ease the discomfort of this part of the journey. The person who is taking medications may result in mood or behavior changes. These changes can cause tension and make you, the caregiver, feel like you’re living with Dr. Jekyll and Mr. Hyde. This is disconcerting and causes you, the caregiver, to question your role in the life of the patient. It also makes you question the sacrifices you’ve made because you’re feeling under appreciated.

Caregiving is a role in life that is often like being the producer and director of a theater production. You may be the coherent one during doctor’s appointments keeping track of the medications, lab orders, and doctor’s appointments. You become the Director of Transportation as you get the patient back and forth from all their appointments.

In all my years of clinical work the one aspect of the family dynamic that creates the most friction is when the person undergoing treatment is not anticipating what the patient needs. You are responsible for being the advance person, and you thought the President of the United States was the only person with an advance team.

Because there is so much “we” time when caregiving, you may feel as if you’re losing your sense of individuality. Everything is filtered through the lens of the illness. It’s crucial that you take some time to keep yourself an individual. The person undergoing treatment may use the guilt card wanting to keep you close, and even when you make plans for a surrogate caregiver, that guilt often hangs heavy over your head. Don’t give in to the cloud of guilt! The person undergoing treatment has survived difficult treatments and side effects from medications; they’ll survive you taking an hour or two for a yoga class, a meeting of your book club, or some creative time in your art studio.

It would be wonderful if we all had the mind reading gifts of the Amazing Kreskin, and in many respects you do. You’re not the caregiver because you’re a stranger; you’re near and dear to the person facing the diagnosis. Whether you believe it or not you do have mindreading capabilities. You know what the favorite foods, television programs, and genre of books is of the patient.

It’s amazing that you can anticipate what the patient needs, and yet many caregivers haven’t a clue about what they need to continue on the caregiving journey. This is one of those times when a caregiver needs a caregiver. I urge you to enlist a friend or family member to keep you grounded and to serve as your touch with reality. This person will be your mirror so you can be alerted when you need rest, a break from the illness arena, or just a reminder of who you are as a person in the world, aside from illness.

You are the Amazing Kreskin, or maybe we can say you’re simply Amazing!

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Posted in Community, Emotional Health, overcoming adversity, Relationships

Unlikely Best Friends

We meet many people throughout our lives. People come and go and if we’re lucky some of them will stay for long periods of time, even forever. This type of relationship is not only heartwarming, but can have substantial health benefits because of the mind-body connection.

Lacey Holsworth is a young girl facing a life-threatening battle with cancer. When the Michigan State University’s basketball team visited the hospital a relationship was born. Lacey and Adreian Payne bonded in a most unique way. He is considered by himself and Lacey’s family to be a part of the Holsworth family. How can you explain the relationship between a 6’10” basketball player and an 8-year-old cancer patient? It’s easy….LOVE!!!

The story was broadcast this morning on Good Morning America. Seeing Adreian and Lacey interact goes far beyond being cute. It moves us into the realm of how love and relationships can serve as a healing tool. Human connection, a sense of belonging, and empathy are some of the things that bring people together and help reduce suffering, isolation, and depression.

It would be easy to think that the benefits of this relationship are only for Lacey, but Adreian benefits as well. His heart is opened and that makes all the relationships in his life more meaningful and felt at a deeper level. The ability to express love and concern for others translates into all areas of our lives. It makes us better family members, better students, better athletes, overall, better humans!

Who has come into your life and left a lasting impression? How are the relationships in your life part of your healthcare plan? Are you aware of the people who cross your path and are meant to be part of your life from here to eternity? We’d love to hear your stories! Feel free to tell us your story in the comment section below!

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

Guardian Angels in the Least Likely Places

San Antonio is providing me with lots of experiences and each a storytelling moment.  The magical part about the stories is that they all have lessons that are so universal that I have to share them with you.  I’m not always one who believes that everything happens for a reason, but in the grand scheme of things there are certain chain of events that bring these lessons to light.

I had arranged for a taxi to pick me up three times a week on the nights I work late.  Last night the driver obviously forgot about me so I called the taxi company for a ride.  I got picked up by a nice guy and we started talking about my job and his job and the city’s transit problems given that it’s a service city based on tourism and the buses don’t run late enough.  For many, taking a cab would be cost prohibitive, but he seems to make a good living. 

When I was getting out of the cab he said, “My dad was in the military, I know what it’s like to be in a strange city, not knowing your way around.”  He then followed that with, “If you need to know where to go to eat…call me.  If you need to know directions to a place…call me.  If you’re at a bar and someone is bothering you…call me and I’ll take care of it”.  I chuckled and was grateful for his generosity of service and heart.  I felt like I had a guardian angel.

So translate that to your life following your diagnosis with a chronic or life-threatening illness.  Who has shown up in your life to make your life a bit more comfortable or safe?  Who has shown up in your life that made you feel protected in times of vulnerability?  Even if you never called them for assistance; there’s a comfort in knowing that someone’s got your back.  It’s like having a safety net that you may never have to use and yet makes you feel more secure in everything you need to do on your journey to wellness.

Look around and see where the guardian angels are in your life…I believe you’ll be surprised.  I’d love to hear how and where your guardian angel appeared.  Let me know so we can all marvel at the wonder of the human spirit!

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

This Didn’t Just Happen to You!

It’s easy to believe that the news the doctor gives you puts a crimp in your style and your life and only your life.  Let’s be serious, you don’t live alone on a mountain, in the middle of the rain forest.  You live in society, maybe with other people (your family), or at least you interact with people on a regular basis.  You don’t live in a vacuum and the diagnosis doesn’t only effect you.  It impacts everyone’s life from the moment the diagnosis is received.

Those who love you may not harbor the physical manifestations of the diagnosis, but they certainly exhibit the impact of the emotional and spiritual aspects.  They can’t help but be impacted by the news because they’re human and they have the capacity for empathy and compassion.  Some of you facing a health challenge believe this is your fight and yours alone, keeping your illness life secretive.  You hide the anxiety and stress affiliated with the diagnosis, the symptoms, and the side-effects.  At least you think you’re hiding all these experience; you’re actually not that good of an actor and everyone who has been around you for a period of time can read you like a book.  Hiding your experience means they have to deny the reality causing them stress and if it persists long enough they’ll begin manifesting stress symptoms.

Include your support network in your life.  Keep people in your family up-to-date on changes, good and bad, in your health.  You don’t have to call everyone as things change you can come up with creative ways of keeping people in the loop.  Technology has allowed us to stay connected without having to pick up the phone.  Blast e-mails allow you to send one e-mail and everyone is in-the-know.  Others have found that creating a private blog gives them the opportunity to express themselves in private and without explanation or a question and answer session.

It’s important to your health that you resist isolation…isolation is a health hazard.  Keeping those who love you at a distance denies the reality of your relationship.  When you negate these relationships it means that people become less available when you may need them the most.  Give yourself every opportunity to thrive; keep those who love you in the loop…it’s a live saver!

Posted in after the diagnosis, Partnerships, Relationships

The Dynamic Duo

Welcome to Caregiver Friday!!!

We love superheroes!  We find the idea of fighting evil and protecting justice an exciting prospect.  Television writers must know this because it shows up on television all the time and in comic books and movies.  There’s something special about the relationship between the superhero and his/her sidekick.  They have an undeniable bond that serves the cause and deepens their personal relationship.

Whether you want to take on role of superhero or leave that to the person fighting the illness is up to you.  There is no denying that together you have the knowledge, wisdom and strength to achieve amazing things.  One of the key aspects of the relationship that builds over time is trust and loyalty.  Our tendency is to support the patient at all costs and protect them from harm.  Now I’m not saying you should take a bullet for them, but there are times that you can shield them from news that may interrupt their determination.

As the caregiver/wellness partner you are often the public relations end of the duo.  You may become the spokesperson and the advocate.  You may need to present the patient’s decisions or requests depending on their health and their personal level of vulnerability.  You are also the filter that information flows through so the patient can hear it clearly and concisely.

The other component of being part of this dynamic duo is the ability and willingness to ask the hard questions and bring up the sensitive topics.  For some, the hardest and most sensitive questions are around end-of-life care.  Unless there is another family member willing to step in, you can’t abdicate this responsibility.  If you don’t feel comfortable bring in a professional who can facilitate the conversation and walk you through the process.

The relationship between patient and caregiver is sacrosanct.  Whether spoken or implied there is a covenant between the two of you and your relationship during this time of illness is built on that covenant.  I’m not suggesting that you shouldn’t question or challenge the patients decisions and assumptions, but it’s like the rule in parenting;  disagree in private and come out to the world with a unified front.

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

Restrain Yourself

We live in a competitive world, but are there limits to where we should and shouldn’t be competitive?  They say that misery loves company but I think we misunderstand what others are telling us and we react quickly thinking if we don’t say something we’re going to miss the opportunity.  I tell you this because I had an experience last night that really made me think about how we hold people telling us distressing news and why we feel the need to jump into the volcano.

A good friend of mine was telling me that her husband is going for a CT scan.  The doctors are thinking he’s having coronary blockage and it will probably end up with bypass surgery.  I could tell that she was distressed and she’d only told one other person; so I felt honored to be held in that inner circle.  I can tell you the knee jerk reaction was to play “can you top this” and describe the crazy things in my own life at this particular moment.  Why is our natural reaction to try and trump the news of another?  Do we feel so out of control when we hear distressing news that we relieve our anxiety by punctuating our own misfortunes?

This game of “can you top this” is confusing for everyone involved because it makes the person telling the original story that there situation isn’t all that bad.  Remember parents who turned to their crying children and said, “you want to cry, I’ll give you something to cry about”.  In this realm it’s almost as if we’re saying, “you want to be sad and upset, let me tell you something that will really make you feel sad and upset”.  Maybe it’s instinctive, maybe it’s loss of mindfulness and maybe it’s our innate need to be the best at everything even if it’s being the best at bad news.

When we restrain ourselves we let the other person know that we’re present with them.  We provide the other person the opportunity to fully explore their emotional and spiritual challenge having a witness to their process.  Allowing the other person to have their moment of emotional truth allows us to offer our humanity and compassion to another without expecting anything in return.  It’s our chance to be of service to a person we love, honor and cherish.

Have you ever found yourself in the position of trying to trump another person in the bad news arena?  What was that experience like for you?  What do you think it was like for the other person?

Posted in after the diagnosis, coping with chronic illness, Living with Illness, Relationships

Is an Auto-Immune Disease a Civil War?

Last night I was catching up on Oprah’s “best life” episodes of the week (love watching it on the DVR, I can skip the commercials).  There was a big question about Oprah stating that her thyroid disease had been cured.  Fortunately, she had Dr. Oz ready and willing to discuss her thyroid issue and I believe it cleared the air for many.  He did make one comment that was an interesting analogy.  He said that “thyroid disease, an auto-immune disease is like a civil war”.

When he first made the comment I was surprised because I’d never heard it put in those terms before.  I guess it’s one thing to think about fighting the enemy and anothe when we’re fighting what we believe is part of us or who we identify with by race, nationality or religion.  So what is it about The Civil War that we have learned how to handle our own personal civil war.

The biggest sticking point in The Civil War was the issue of slavery.  Is there one sticking point in your auto-immune disease?  I’m not talking about a cure because if you had that you’d be disease free, the richest person on the planet and the winner of the Nobel Prize in Medicine.  I’m talking about one particular antagonist in your body or your lifestyle that can be changed.  Overwhelmingly doctors will point to stress as that one factor, but is it your?  If not can you take an inventory of the things that get under your skin, figuratively and literally and begin to flush out what provokes you physically, emotionally and spiritually?

We all have a limited number of resources.  It seems fruitless to take that energy and direct it to combating something internally when there are a host of threats on all levels to our health and safety out in the world.  I guess I’m saying this is a true to call to action.  If you’re facing an auto-immune disease how will you create reconciliation within your body?  What can you do to facilitate that reconciliation?  How will you invite the part of you that seceded back into the fold?  How will you discard the disappointment you feel toward that part that seceded?

I know there are a lot of questions but creating a personal, internal peace treaty is critical to your well-being.  How will you become the negotiator, facilitator and keeper of the peace…your peace?

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

Reclaim Your Life

Welcome to Caregiver Friday!

I’ve written numerous entries about how your life changes when you become a caregiver/wellness partner. I’ve discussed your roles, your activities, and how your life changes.  I’ve focused on the change and not on the status quo.  You are the status quo.  Your life, your interests, and your ambitions are still yours.  So I guess the real question I’m asking is, “What’s Still Yours”?

They say that possession is nine tenths of the law.  What do you still possess?  How is it that so many caregivers abandon their lives.  I’m not talking about doing for others because I believe that to be magnanimous, and the greatest gift we can offer another human being.  That being said, let’s take a moment for real honesty.  What are you whispering to yourself in private, in the middle or the night, or in your dreams about what you want your life to resemble.

I could rely on cute sayings or use big theories or human motivation, but I want it to hit closer to home for you.  I want you to take a deep breath, get quiet and ask yourself, “what do I want my life to look like”?  It’s not a selfish question; it’s an honest question.  I will use one frequently used phrase, “life is too short so don’t waste it”.  Now I know I’m going to get some e-mails saying that you don’t feel like caregiving is wasting your life.  That’s not what I’m saying by a long shot.  What I am saying is that if it’s all you do then are you hoping for sainthood after your own death.  Personally, I’m the wrong religion and I haven’t performed, as of yet, three miracles so since I’m already out of the running for sainthood I’ll have to settle for living my humanity to its highest level.

We seem to think that caregiving is a black or white discussion.  In order to be a good caregiver it’s essential or mandates that you sacrifice your own needs, desires and wants because there is a greater urgency and force that lures you away from your own life.  I believe on some level that many caregivers, especially those  who have been offering care for a long time have forgotten how to live their life.  I’m opening the dialogue because as Socrates said, “The unexamined life is not worth living”.  There you have it, the quintessential catch phrase from one of the worlds greatest thinkers.

The first step to reclaiming your life is examining the life you’re living.  It’s about keeping your inner fire burning through the caregiving process.  Take a cooking class, go paint in the park, read a good book without interuption, go ice skating or dancing, but whatever you do make it yours.  Believe it or not the person you’re caring for will live without you for a couple of hours (yes, you may need to find respite care so the patient isn’t alone).  Our love for another is irreplaceable, but actions we do for another can be done by anyone.

It makes me think of the parent, especially mothers, who make their children their whole lives.  When the children leave home they have to first begin to form an identity.  Can’t we be more than one thing at a time?  As humans don’t we have the capacity to hold two ideas in our consciousness simultaneously?  Aren’t we permitted to be caring and nurturing and selfish all at the same time?  Doesn’t doing one makes the other parts of us stronger?

I’ll keep thinking about this issue because I believe there are a lot of misconceptions tied up with caregiving, sacrifice, duty, expectations and service.  What I’m sharing aren’t anything but questions for you to ask yourself what fits and what doesn’t.  It’s about making the thoughts your having in secret a bit more conscious and real.

Do you want to reclaim your life?  How might you do it?  What steps have you taken along this journey?

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!