Yesterday, while reading the blog posts of parents of children with permanent impairments, I came across some wonderful writing by Emily Perl Kingsley. (In fact, I came across it several times - an indicator, perhaps, of its accuracy and potency for many family caregivers.)Emily Kingsley, the mother of a child with Down Syndrome and a long time writer for Sesame Street, describes her understanding of the losses of caregiving in these words:
*Welcome to Holland
I am often asked to describe the experience of
raising a child with a disability - to try to help
people who have not shared that unique experience
to understand it, to imagine how it would feel. It's
like this......
When you're going to have a baby, it's like planning
a fabulous vacation trip - to Italy. You buy a bunch
of guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in
Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally
arrives. You pack your bags and off you go. Several
hours later, the plane lands. the stewardess comes
in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland??
I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've
landed in Holland and there you must stay.
The important thing is that they haven't taken you
to a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different
place.
So you must go out and buy new guide books. And
you must learn a whole new language. Any you will
meet a whole new group of people you would never
have met.
It's just a different place. It's slower-paced than
Italy, less flashy than Italy. But after you've been
there for a while and you catch your breath, you
look around....and you begin to notice that Holland
has windmills....and Holland has tulips. Holland even
has Rembrandts.
But everyone you know is busy coming and going
from Italy....and they're all bragging about what a
wonderful time they had there. And for the rest of
your life, you will say "Yes, that's where I was
supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go
away....because the loss of that dream is a very, very
significant loss.
But....If you spend your life mourning the fact that
you didn't get to Italy, you may never be free to
enjoy the very special, the very lovely things...
about Holland.
Chronic sorrow is the natural, understandable, nonpathological grief response experienced by people with significant permanent impairments and by those who love them. Because their losses last a lifetime, so does their grief.
People with chronic sorrow experience a pervasive sense of sadness, sometimes close to the surface, sometimes farther away, with intermittent periods of more intense emotional pain triggered by missed developmental milestones, deteriorations, anniversaries, critical incidents and other occurrences that highlight the difference between what is and what "should have been". This sadness can look like, and be mistaken for, depression.
Chronic sorrow is a very important concept for family caregivers and for helping professionals yet, it is little known within either population. I was not formally aware of it as a member of either group and I remember feeling anger, shame and confusion, as a family caregiver, over my seeming inability to rise above, get through, let go of or move beyond my grief in order to "get on with my life". (An unrealistic expectation stated, externally, by family, friends and colleagues - in the gentlest, most caring of ways - and, internally, by my own inner critic.)
The truth is that a permanent adjustment to such a dynamic loss is not possible. We don't "get over" chronic sorrow; we can only learn to get better at living with it. Thus, many of the usual goals of grief therapy - disconnecting from the source of the loss, increasing recognition of the reality of the loss, expressing anger toward the person who is the source of the loss and facilitating catharsis - are not helpful to us.
What we can benefit from - even though chronic sorrow is not a pathology - is having someone wise and knowledgable to be a "companion on the journey". Someone to walk with us through our unique manifestations of grief and posttraumatic stress. Someone to teach us new skills for managing our aroused nervous systems and for containing and releasing our feelings. Someone to listen as we reflect upon and update our belief systems. Someone to be with us so we can learn to embrace what is. Someone who understands both our need to to grieve the loss of Italy each time it resurfaces and our need to see the wonders that are Holland. Someone to help us to be present, in the moment, no matter where we are. (It is usually best if this someone is a certified helping professional who knows about, or is willing to learn about, chronic sorrow.)
If you are interested in learning more about chronic sorrow, I highly recommend Chronic Sorrow: A Living Loss by Dr. Susan Ross, PhD (2002). It is a professional textbook but it is written clearly enough for psychologically oriented nonprofessionals to understand it. And, if you are interested in booking a Caregiver Wellness Chronic Sorrow workshop - for family caregivers or for helping professionals - please read the column to the left then contact me by phone or by email.
* I have searched, in vain, for a contact email address for Emily Kingsley to request permission to use this piece in workshops. If you know how to reach her, could you let me know, please?
No comments:
Post a Comment