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.

Wednesday, December 14, 2016

Today Is a Good Day...

"Today is a good day for a good day."

I don't know the origin of this quote, but I've been repeating it often of late.  I first heard it used on an HGTV series, Fixer Upper, with Chip and Joanna Gaines.  It not only makes me smile, but reminds me to declare each day as a new possibility, regardless of the state of the preceding day. 

It's not that I'm into denial.  I certainly know bad things happen to good people.  I believe we are in for some rough years ahead with the division in this country and threats around the world.  I understand full well that "aging is no place for sissies."  I face reality every time John needs another transfusion or I hear about another Trump nomination. 

In order to have some good days in spite of all that, however, I am focusing on what I/we can control.  I read my news from a source I trust. I call my representatives to express my opinions and concerns.  I take appropriate surveys.  I try to influence others to do the same. I make sure we stay in regular communication with the cancer clinic.  I learn as much as I can digest about John's condition so that we do our part in his treatment.  

And I repeat, sometimes more than once a day, "today is a good day for a good day."  It reminds me to focus on those things and those thoughts that contribute to a good day.  For me, that includes spending time with John.  It includes contacting a friend, taking time to journal and to read something inspirational.  (Right now, that's The Power of Now by Eckhart Tolle.)   It includes limiting negative news as much as possible, whether on TV or Facebook.  And spending time on a project whose completion brings me satisfaction, like simplifying our home or drawing.

It also includes watching something entertaining on TV.  When I had cancer some years ago, I watched every Fred Astaire or Gene Kelley film I could find.  I know every lyric to the songs of Seven Brides for Seven Brothers and can quote much of the dialog of The Princess Bride and The Wizard of Oz.  And I confess, I'm a sucker for Hallmark movies, especially over the holidays.

I could wish I had come across this quote years ago.  It might have made some difficult periods in my life easier to endure, but I suspect I might not have had the wisdom to appreciate and use it.  For now, therefore, I am adding this quote to tonight's list of gratitudes, followed by "it has been a good day!"


Friday, December 9, 2016

Keep It Simple Sweetheart

"Life is simple, but we insist on making it complex."

I think most people would understand were we to choose not to decorate for the holidays this year.  Coming off a rough month for both of us, we are weary.  But having had to forego our Thanksgiving tradition with friends, and having spent so much time last year organizing decorations for an easier holiday this year, we decided to go ahead, albeit more simply.  

So, our Christmas tree, a bit smaller than last year's, is up, decorated and topped with our traditional angel.  The mantel, with fewer ornaments than last year, is lovely nonetheless.  A few of our other decorations rest in their usual spots - not ready yet to give up my Santa collection or the large bowls of beautiful ornaments.  But several items are destined now for other homes and newer memories.  Simpler, not abandoned.

The effort has been well worth it.  First, decorating together is just plain fun and it was rewarding to see that my efforts last year were worth it.  Not only fun, but easier than usual. Secondwe both love the look and feel of our home at the holidays and would have missed it. Third, while almost everyday brings new information, new challenges, a new normal, this is a cherished piece of the old normal.  Fourth, when there is so much out of our control, decorating, (and deciding what to let go), is something we can control.  

Most valuable, however, has been the recognition that not only do we need to simplify our home for easier maintenance and a calmer environment, but we would benefit from simplifying our efforts, our habits and routines as well. This is a project to do together and one that will keep us on focused on the here and now, rather than worry and fret over a future we can't control.

So, we've started, not just to be better organized or reduce clutter (a goal I've been working on ever since we merged two homes into one), but to simplify, to make easier to manage, to reduce maintenance and effort, to reduce the complexities. A different set of criteria. 

After only one week, we have made a small dent, and it's already clear that this will take a different way of thinking.  We will do well to remember why we are doing this.  We will have to focus on what we are gaining rather than what we are letting go.  We will have to pace ourselves, to keep our approach and strategies simple, too.  One collection, one box, one cupboard, one drawer, one pile of papers.  Our mantra...keep it simple sweetheart.