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

Family Are the Best Protectors

There probably isn’t anyone who knows you better than your family.  In the family therapy community there’s a joke, “Why does your family push your buttons?   Because they installed them!”  Funny but also very true.  The connections you have with loved ones can save your life when you’re in the hospital.

A Wall Street Journal article discussed new legislation being passed in states that gives family or those with legal rights to make medical decisions the right to call for help in times of trouble.  When a family notices potentially lethal changes or problems as a result of medical errors hospitals are beginning to create emergency teams that will respond.  Why has this happened?

There have been cases where a family member noticed changes in a patient and the only people who have had contact with the patient were nurses and residents.  Believe it or not there are times when we need the big guns, the attending physicians who can spot the problems that residents may have never encountered in their training.  These laws have come about because of deaths that resulted from this lack of care.

The article states, “…a new patient-safety law in the state (South Carolina), is one of a number of hospitals to give patients families the power to demand immediate attention from experienced medical staff when they fear a worsening condition.”  The article does on to say, “…studies show patients particularly vulnerable on nights and weekends when hospitals are often thinly staffed and those on duty may hesitate to call in senior physicians.” 

We’re dealing with multiple systems, but the truth is as a someone caring for a loved one in the hospital, show some moxy and call the senior physician.  Do you really want to start your career with an unnecessary death on your hands?  I know the problem is deeper because we’re dealing with a culture in the medical community that has perpetuated itself for a very long and time and breaking these unspoken rules gets the intern/resident in trouble.  As patients and caregivers we have to get past the politics of the medical community and do what’s right for our loved one. 

As a result of these medical errors there is a group forming called “Mothers Against Medical Errors”.  This tells us that it’s not a fluke, but a true epidemic in our hospitals.  The website will be launched at the end of the month, http://www.empoweredpatientcoalition.org.  If you or a loved one is going in to the hospital, learn the symptoms that could be the result of an escalating problem.  Ask a lot of questions?  Don’t take vague answers!  Give yourself and your loved ones every benefit to leave the hospital on the road to health and healing.

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

Fly Like a Bird

Ever watch a bird soar through the sky?  It looks effortless and majestic.  Leonardo da Vinci studies birds in flight and eventually came up with plans for gliders, parachutes and other machines related to flight…just by watching.  When we watch birds we see the two wings twist and turn, be raised and lowered and move up and down propelling the bird through the sky.  It needs both wings to fly.

In our emotional and spiritual lives we need both wings and we need them to work together.  In her book Compassion, Christina Feldman writes, “Wisdom and compassion are like the two wings of a bird..  Both are necessary for the bird to soar, both are necessary for our hearts to open and heal.”  How have you kept soaring since your diagnosis?

When facing a health challenge it’s easy to develop wisdom because you’re engaged in the scholarly collection of information related to your diagnosis.  You become savvy to the medical system by learning the language, understanding the politics of the medical office, and you learn who the decision makers are in regarding your insurance.  That’s only one half of the story.  The other part, as stated by Feldman, without compassion you only have use of one wing and that means you’ll forever be flying in circles.

It’s a tricky situation to find the balance between heart and head, but it’s important since the mind-body connection is alive and well and scientifically proven.  The compassion is not only for yourself, but for each person you come in contact with who is helping you move to a place of health and healing.  It’s your medical team, your emotional support and your spiritual directors.  For all I know it can be your paper boy…but compassion comes into play because it means that each interaction isn’t false and predicated on what people want to hear…the happy and the good.  It includes the full spectrum of your experience.

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

True or False Self?

We all have many roles that we take on in our daily lives.  Each role taps into a specific part of our being and requires us to present to the world in specific ways, the ways people expect us to act.  The problem is that when you get into putting on a persona for the world how authentic are you?  Is it a chore to take on the role and play it to the hilt?  What would it mean to let everything go and just be you?

I know that following the diagnosis of a chronic or life-threatening illness the world only gives you two choices of patient roles.  You either are expected to a be a total invalid, helpless and dependent or you’re expected to show a stiff upper life and be the stoic individual who is unphased by anything that is happening to you.  Is the world of health challenges really black and white? 

Thomas Merton, one of the great spiritual minds of the twentieth century talked about the “false self” and the “true self”.  The ” false self” is who we present to the world based on everyone’s expectations.  It’s the self that we think we be liked by others and appeals to the masses.  The “true self” is the person you are before God.  Bill Hybels, a noted author, wrote a book called, Who You Are When No One’s Looking.  We all have those moments where the only relationship is between you and a supreme being (however you define that for yourself).  Those are the moments of the greatest truth, the least pretense, and the most connected to self and others.

Ask yourself what you need to do to present your “true self” to the world.  What would happen to your relationships if others saw the “true self”.  Then ask yourself, “Why are we so afraid to allow others to see us in our most vulnerable and most honest state…the state that God hopes we hold on to tightly.

It’s your choice how you walk in the world, but the “false self” can be exhausting and I don’t know about you, but I’d rather conserve my energy for health and healing.