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

Telling The Story

How many times have you told your illness story?  If you’ve been a part of a support group the answer is too many times to count. If you haven’t you may have told the story to close friends, extended family, significant others, but every time you tell the story you need to think about how you feel about the story.\

Last night I began telling my story again after making a comment about going to get refills of my medication.  My story begins when I was twelve so I’ve been living with an autoimmune disease for many years.  The story had a different story this time because I was looking at it from the vantage point of feeling blessed.  I’m blessed because I have health insurance, and great health insurance at that.  If I didn’t have this insurance my life would be far less pleasant than it is.

There is a discrepancy in this country when it comes to health care.  The treatments I receive are very expensive if I were paying out of pocket.  I have a physician who monitors me closely and we always discuss new treatment options as they become available.  If I didn’t have health insurance I’d be a mess.  I’d be totally disabled.  If I had mediocre health insurance I’d have to make choices between treatment food, gas and treatment.  I’m not sure what type of treatments I’d receive if I had federal health insurance such as Medicaid.

I’m sharing this with you because telling the story this time brought up feelings of relief and gratitude, not something you hear about often when discussing illness.  I have the opportunity every day to live my without too many interruptions.  I know that all treatments have long term effects, but today I’m feeling great.

I realize now that it’s important for me to tell my story on a regular basis.  I take away different lessons each time and that promotes my own wellness.  If gives me physical and spiritual stamina which all of us facing an illness need to develop for our journey to wellness.

Posted in History, Spirituality and Health

Seeing with New Eyes

Is it possible to enter every exchange and activity as if you were doing for the first time?  Obviously there are times when the first time experience is real, but what about times when situations are similar, or the theme resonates through your life.  How do we face a life-altering diagnosis with new eyes?  Is it possible?

The Buddhists speak about beginner’s mind.  When I first heard the idea I was puzzled because I didn’t understand how you could wipe the slate clean as if you have no history.  Over time I realized part of the process is abandoning your expectations about the outcome.  Relieving yourself of the a definitive outcome before the experience has happened.  This seems like an easy thing to accomplish, but in reality it’s probably one of the more cumbersome practices of your spiritual life.

When facing an illness, beginner’s mind can focus on the idea that your experience is only your experience.  That means that anything others have told you about their experience is anecdotal and doesn’t predispose you to the exact same experience.  Whenever we are facing new experiences as humans there are too many variables to take into account.  Think about friends who have been pregnant, some have morning sickness from the moment of conception and others are still waiting for the experience.

Allow yourself the opportunity to take your treatment, your support system, your spiritual practice as individual as you.  Give yourself the opportunity to be surprised at the outcome instead of imprisoned by it?  Find new ways of making the experience your own and leave it at that, your experience.  We can share our experience, but only as a place of empathy, not the final say i the outcome.

Posted in Anonymity, History, In the Know

Homage to our Heroes

When we walk this world as a pilgrim we are in search of answers.  Sometimes the questions are those of an inner nature, emotional or spiritual.  Other times the questions are very pragmatic, especially when facing a life-altering diagnosis.  The questions that rise to the surface are related to research, treatment options and new frontiers.

It’s important to know about the researchers who are working on your particular health issue.  Become familiar with their names and talk about them.  It’s important to increase their name recognition because that brings attention to the work their doing and down the road can result in increased funding for research. 

There are some great men like Dr. Judah Folkman who prefer to be quiet heroes.  They don’t like to be in the spotlight and deflect the attention from individual attention to repositioning himself as part of a collaborative.  His work in cancer research is heralded as ground breaking and the foundation upon which much of today’s research is based and yet his humanity always shined through.

In a recent Newsweek article, following Folkman’s recent death the article referred to his tenacity when facing scientific skepticism.  They go on to share the fun other scientists had with his ideas, almost in a mocking fashion.  But the tides would turn and researchers would come to understand not only the plausibility of his work, but the realization that his work could and would be the epicenter of treatment coming down the pike.

The article shares a great quote from Folkman about the asking questions to get ahead.  He said, “You have to think ahead, Science goes where you imagine it.” So give the researchers working on your behalf the honor they’re due.  You can always find out about the work by logging on to the associations and organizations that support your health issue.  Become a pilgrim and find your own soap box.  The result down the road can be great findings that can improve your health and the quality of your life.

Posted in History

What’s Your Lineage?

I was listening, inadvertently, to two women talking.  One was receiving treatment for cancer and the other was the spouse of someone receiving treatment.  They were engaged in a lively discussion…I thought that was encouraging.

Both women were older, but the older of the two made a bold statement.  She said that her father instilled in them that you always need to have a positive outlook otherwise how can you attract good.  Her father was ahead of his time given all the recent talk about the “law of attraction”.  The other women seemed discouraged and didn’t have that belief system…she seemed to be getting by.

Ever wonder what messages are part of your family legacy?  I don’t think we often consider our “values lineage” or “tribal beliefs”.  It’s not until we face a huge challenge that we revert to these primal familial strongholds.  Being able to identify them and utilize these beliefs like the women whose father encourage thinking positive may not have been a daily practice, but I believe it is now.

My hope for the other woman is that a seed is planted about the power of having faith and looking for hope around every corner.  These are the times that I believe is serendipity.  Were these two women destined to meet so that one could impart wisdom to the other?  Did the discouraged woman in her heart make a universal call for hope?  We’ll never know but these two women created a sacred space to discuss some of life’s big challenges and I was a witness to the process.