Friday, December 23, 2016

This Much I Have Learned

"In the middle of every difficulty lies opportunity."
~ Albert Einstein

 I have kept a personal journal for 40 years now, my own unedited, politically incorrect, safe confessional.  I  periodically have gone back to review a volume or two, sometimes out of mere curiosity, sometimes - as this past week - because I want to see if/what I have learned. Not surprising I'm sure that I would start with the most recent volume whose first entry was Sept. 1, three days before the ER visit that led to John's dire diagnosis.  

This much I have learned - in no order of importance -
  • that Einstein was so right.  This challenge is the opportunity for many things.  Like learning.  I know more today than three months ago.  I know more about his disease. I know more about John.  I know more about myself.  I know more than I want to know about navigating the health care system, even a good one. 
  • that even though John and I have battled cancer twice before, I did not appreciate or respect his courage and resiliency as much as I do today.  He is my hero.
  • that just because we fought this fight before, we have had to acquire new knowledge, new skills, new attitudes for this particular battle.
  • that the most important role of caregiving may be that of advocacy with the individuals and institutions on whom your loved one's survival depends.  And that that role calls for skill, patience, tenacity and above all, fearlessness.
  • that I am a great advocate! 
  • that support and help can come in the most creative ways, from the least expected quarters, and take your breath away.
  • that we have an incredible network of support here.  And that knowing that has removed a source of worry for John.  He knows I would not be alone.
  • that the very differences between John and me that have at times been the source of disagreements and stress, harnessed, are the source of our strength, resiliency and endurance.
  • that one of the biggest challenges for me is to stay present and not leap into an unknown, frightening future.  And developing that skill, though difficult, may be the biggest opportunity for me, the one that will impact the very future I worry about.
  • that I need to take care of me as well as John.  I sometimes do a better job at the latter than the former.
  • that it takes constant conscious attention to maintain a healthy tension between realism and optimism.  And between enjoying the present and planning for a future we may not want.
  • that this time is bittersweet.  The bitter - his frequent need for transfusions; the reality that this is currently incurable; watching him give up so many things he enjoys; observing his fatigue; the vigilance needed to prevent infection, etc., etc.  The sweet - deeper communication; greater and more frequent expression of affection and respect, not only between us but for us; a stronger partnership than we've ever had, etc., etc.  And that the sweet does not negate the bitter, nor vice versa. 
  • that a sense of humor is more valuable than I ever realized.  Thank heaven John has a good one.
  • that simplifying our environment and our routines isn't about losing anything.  It's about gaining time and space, calm and serenity.
  • that, while others can and will give you advice, everyone handles a crisis like this in his or her own way.  And what may work for you one day may not the very next.
  • that I have a whole new respect for the chronically ill and their caregivers.
  • and that, though I have learned a lot, I know I have so much more to learn.
Last September I decided to share our journey here in the hope that what we are experiencing and learning along the way could be of value to others who are or will be in a similar situation.  I hope this is so.  And to all who are following this and perhaps sharing it with others, thank you.  And Happy Holidays to all.

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