Posted in Partnerships

Holding the Pain

It’s amazing how certain things in our lives keeps showing up.  In my conversations for the past twenty years with people like you, those newly diagnosed with a chronic or life-threatening illness, the same words and phrases continually appear.  Our human experience is shared and our emotional and spiritual lives are ways we can express ourselves to others.  Here is something I wrote back in 1997 that I found this morning:

July 2, 1997

What is it that makes us ready to open our heart to a pain which is so pure and genuine?  Being incorporated into someone’s life the way a cat hair may get crocheted into an afghan.  The opportunity to bond with an individual or family in such a way that when the person is alive you’re a godsend and afterwards all you represent is death and emptiness, or do I?   What else might I be?  I hope I can restore people’s faith in human nature.

Somewhere when a person has been violated or betrayed, either by someone else or their own body, I arrive and ask them to trust me, to help them navigate this new life.  I try to reverse or make better all the ills they have suffered in their life or are currently suffering.  My attempt is to help the person clean out the wound and be able, once again, to connect to the human essence of compassion and connectedness.

I like awake wondering how to relieve a person’s suffering.  As I write I realize it is about bracing myself for a bumpy roller coaster ride which will continue until the calm of the coaster station arrives at which point the person has died.  May I have it backwards, perhaps the roller coaster ride doesn’t start until the person dies or maybe it starts the moment the doctor says, “I’m sorry to tell you…”  I guess we need to look at who’s at the control panel–maybe we’ll both be surprised.

So the real question becomes, “How do you measure a year?” as the question is posed in my favorite musical RENT.  Maybe love is the only yardstick to use anywhere.  That being the case, can I be on the lookout for such a blatant experience?  Will I know it as it happens or will I need to look back and say; this was a sign of love.  A measure of that person’s trust, not to do harm, faith to be true to my word and genuine in my emotions throughout our journey together.

So for now I will get in the car with you on this ride.  I may not be able to take the fear out of the ride, but maybe it’s really about being able to scream with you as we go over the huge drop on the roller coaster–that freedom to release and have witness to the experience.

I offer this post with admiration, love, and support for your journey.

Posted in coping with chronic illness, coping with life threatening illness

Anchors Away

When we’re newly diagnosed we have lots of decisions to make, often in a short period of time.  It’s not often that we take the time to focus on our identity as a person with a health challenge when more pressing matters are present.  I’ve started wondering…in order to experience wellness, do we have to let go of who we were and embrace who we will become.

Let me just say that when I say “who we will become” I’m not focusing on the illness itself.  I’m really thinking about the qualities, characteristics, behaviors, experiences that we will have as a result of our illness.  I’ve worked with individuals for many years, following my own health challenge, and people ask would we change anything?  The obvious answer is YES…we could choose not to be ill.  Then I started thinking and of course the ideal is to be healthy with no restrictions and certainly no medical treatment walking by our side.  I also began to think about what have I become since my diagnosis.

On a personal note, my auto-immune diagnosis came late in my adolescence.  I have grown up with my illness and maybe that’s different than those being diagnosed as adults.  What I know is that I’ve become a more inquisitive person.  I engage in more conversations about things that matter to me and I certainly am particular about those I choose to spend time with on a regular basis.

What is developing in you?  Are you becoming more assertive?  Have you realigned your priorities so that what you say and how you act are congruent?  I think of Tim McGraw’s song “Live Like You Were Dying” and it rings a strong chord.  Who will we become as a result of a diagnosis or the diagnosis of someone who is near an dear to our hearts.

This may seem like the furthest thing from the minds of those who are newly diagnosed.  I can assure you that the questions had begun long before your diagnosis.  We watch those around us get sick, some overcome the challenge and others die, but the questions begin and we can’t stop them.  When we’re diagnosed it goes from a passing thought to, for some, an obsession.  Questions are good.  The Ancient Greeks lived in the question and they felt that’s how you achieved the “Good Life”.  Isn’t that something we all want?

Don’t be afraid of who you’ll become because you won’t ever lose the humor, compassion, love and experiences you had pre-diagnosis.  This in a bizarre way just adds to our repertoire.  I’d love to know who you’re becoming…please share it with us!