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An old adage goes "It is not the things that happen to us but the
meaning we give those experiences that cause us pain."
If we consider that idea, then we have a certain choice and power over
the losses brought about by this disease. How we define (or remember)
ourselves and our family relationships before the onset is a key issue
and task for our current mental health. For example, your view can be, "
I (Harry or Mary) have a great sense of humor, adventure, fairness, a
love of conversation and have a very playful relationship with my
partner." The disease process could have shifted that view to "I (Mary
or Harry) am a victim, can't do anything, can no longer talk and am a
burden on my family."
Good mental health has to be based on the core person you each were (as
an individual and family) before the illness, allowing for the limits
and losses. Counseling must help you to re-connect with those
characteristics. It must help you re-envision and rediscover yourself.
It also requires you to set up situations in which those characteristics
can be experienced and expressed again.
Probably every one has read "Tuesdays with Morrie." Wasn't his unique
essence the ability to be himself and make his natural curiosity,
analysis and joie de vive present in every interaction? We can dismiss
it by saying, "He was exceptionally well-educated or rich or blessed."
But I would raise the possibility that he had good mental hygiene
habits. What does that mean? He was who he was (including qualities and
warts). He felt what he felt (reverence, irreverence, anger,
appreciation). He identified his needs (discussing philosophy or have
his anatomic orifice wiped). He valued other people's gifts and time and
he "opened his cage." What the heck does that mean to "opened his cage"?
As this disease steals from us or our loved one his/her ability to
locomote, communicate, use familiar skills, there are initial reactions,
just as in other fearful situations. We freeze, flee or fight.
When we freeze, our world becomes narrow and we stop reaching out,
involving other people in our life. Each loss of skill or ability
becomes the focus of our thoughts, rather than discovering how to
compensate for that loss with technology, alternate ways of moving,
communicating, or relating to people in a more personal way.
When we flee, it is usually inward with depression and isolation. We
lose patience with people who don't quite understand our new way of
talking and then we stop talking. We become TV- focused and passive.
That leads to intellectual, emotional and physical stagnation because we
don't use resources that the physical or respiratory therapist or
neurologist suggests. It is easier to isolate in the short term but it
costs big time in the long run.
When we fight, we usually pick the wrong fight. We fight with our
caregiver, maybe because they are so willing to understand. We fight
with our doctor, maybe because she can get up and walk away and will
never fully know all of the pain and sadness. We fight with our formerly
athletic body because it has betrayed us.
When we "open the cage" we connect with who we are, where we are as far
as freezing, fleeing or fighting. Then we open up to the world, move out
of the unproductive behaviors and interactions. We challenge ourselves
to breakthrough isolation and passivity. (This is where a good mental
health counselor or prudent medication can help.) We begin to choose new
adventures (going to the movie, setting up a date with our spouse or
sibling) and to invite the right people into our world (enthusiastic,
joyful, honest, challenging people, good storytellers).
You as an individual and family are involved in the biggest fight of
your life. But now is a wonderful time to wage that fight. When Lou
Gehrig's fight was going on, there were no handicapped accessible
buildings, accessible vans, Internet, and websites. Biotechnology and
metallurgy has made a difference in utility of support resources. The
"can do mentality" of the 60's and 70's has made support groups a
necessary and productive part of dealing with any adversity. Fight the
good fight and use the full resources.
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