Distress
(with a lot of input from Bill)
About a year
ago, we wrote an essay called "Toe Curls, Merry Go Rounds,
and Stress Over PD." I had had a new symptom surface that
made me stop and think about how I was distressing myself
about Parkinson's disease. My experience wasn't all that
unique. We all experience new symptoms from time to time
because we have a progressive disease. In fact, a lot of us
have been through some really rough times lately with such
changes. Beyond dealing with the physical symptoms, on the
emotional side, some of us seem to be able to handle those
changes without distressing ourselves, while others feel
devastated by them. In the past
year my PD has progressed, but many of the things I learned
a year ago about coping still are valid. As many of you have
observed in the metaphors, we often can't change what's
happening to us, but we frequently do have more control than
we realize over how we react to what happens. It is easy to
forget to remember stuff we've learned, so it seems like a
good idea to revise and revisit some of the concepts from
that first essay.
I was sitting
in a yoga class trying to do a pose that involved pressing
the soles of your feet against each other. At one point, my
instructor asked the students to press the toes of one foot
against the toes of the other foot. As I tried, I became
aware that my toes were curled up and I could not do this,
although everyone else was doing it without any trouble.
Suddenly I became aware of another symptom of PD. I had
heard of "toe curling" but never thought much about it. But
here it was. I was self-conscious about it at first, but
soon dismissed the toe curls as a non-issue and continued
with the class. As the class went on, I reflected that even
as I have become more aware of my PD, I have also become
more aware of my wholeness and value as a person, my "inner
worth." Now, over the past year, those toe curls have become
more intense. They cause me their share of physical pain and
although this is stressful, I am not distressing myself over
them. There
have been other new symptoms, too, and changes/increases in
medication, but I am dealing with those changes as well. I
feel lucky, and I am…but I also am realizing more and
more that I create a good deal of my luck by the attitude
inside my head. Having PD is like being shot with an arrow
called Disease (See The
Twisted Arrow). We all
felt the hurt when we were first diagnosed with PD. Ranting
to myself about how terrible and unfair it is that I have
yet another symptom would be like grabbing hold of that PD
arrow with my hand and twisting it, making the wound bigger.
It would be easy to say to myself with alarm, "Oh no, what
next!" as I lapse into worry and "awful-izing" ("This sure
is an awful disease!" "Isn't it awful that I have this
disease!"). Then, instead of dealing with PD, I would be
fighting it and getting more stressed and worried. I'm
learning to not make the injury worse by twisting the arrow.
A friend I met on another
website wrote to me about her struggle with anger. She has
had PD for ten years and has a lot of back pain despite
three back surgeries. She wrote: "I just feel like I'm on a
Merry-Go-Round. And on those days that are pity party days,
I get to thinking that this is so unfair. It's not right
that one person should have all this to contend
with." She seems to be saying, "If
life was fair, we wouldn't be on this PD merry-go-round."
But since when does the definition of the word "life"
contain the word "fair"?! Whether or not we Should be
on this merry-go-round, we ARE-- and there is nothing we can
do about it! I don't know about you, but I don't see
anyone standing on the side and asking if I would like to
get off. For me, the goal is to ride it as well as I
can, to be the best darn merry-go-round rider I can be.
That doesn't mean happily accepting everything that
comes your way, so much as gritting your teeth and working
with what is. Anger just makes the merry-go-round go faster
and feel even more out of control. Regarding fairness: Just
imagine that in a national election there is a question on
the ballot, which asks, "Was it fair that (Your Name)
got PD?" And that night when the votes are tallied,
the answer comes in 3 billion to none, "No!!!!"
Do you feel better? Actually, you probably feel even
angrier. Twist, twist, twist! "See, everyone
agrees, it WASN'T fair! I knew it all along!" But really,
fairness is kind of irrelevant. Whether it's fair or not, we
have PD, and so now we ride the merry-go-round.
Reducing
Dis-ease Bill reminded me that there's a
big difference between disease and dis-ease. Heaven knows,
I'm still diseased, but I guess what I've been talking about
here is how I'm learning some ways to reduce my dis-ease
(dis-comfort, dis-stress) over Parkinsons. As a result I
have a sense of well being, even in the midst of not being
well. The great majority of people
associate worth with deeds, actions, and performance, and
so, when I write about inner worth…you might be saying
"yes, but" to yourself. "Yes, but. . . I can't do the things
I used to be able to do and I miss them terribly." But if we
dwell on what's wrong instead of what's right, we experience
all the dis-comfort, dis-stress, dis-ease. What I'm learning
is that I need to focus on today….on what I can
do….and I need to use my skills and sensibilities
differently. In yoga class that meant doing what feels right
for me rather than worrying about what others think. It
meant working with rather than against my PD. So I have new
symptoms. So what?!?! Focusing on what I can't do just
stresses/distresses me. I can't pull out that PD arrow.
It's too big and in too deep. But I can and do work to keep
my hands off of that arrow--leaving it alone because,
although it hurts, it can't twist itself. And meanwhile, I
focus my attention on all those secondary arrows I shoot
myself with (the Should statements, the What-Ifs, the
Awfuls).
Acceptance Some people believe that we
should never accept PD, but instead, we should fight it. But
"accepting" PD does not mean giving up and giving in to it.
And hence, acceptance is not a "losing" position, i.e.,
"you've JUST got to accept it!" Yuck!! What a wimpy, wussy
position that would be! On the contrary, real
acceptance is --Looking for ways to
counter new symptoms, to reduce them, and to live better
with them --Being pro-active by
tackling a problem and resolving it as well and
thoroughly as possible --Acting out of practical
adaptive thinking about what will help you most, rather
than out of anger, embarrassment, and twisting of arrows.
The focus is on thinking, not on upset feelings, because
the latter tear you up. --Changing what you can
change, and letting go of the Need to change what you
can't. (Serenity Prayer) It is true that I STRONGLY
dislike PD, but I don't HATE it because that level of anger
makes me twist the PD arrow and adds dis-ease to the
disease. And I don't need that!!! When I am angry enough to
cause dis-ease and dis-stress, my PD symptoms get worse. My
tremor kicks up wildly and my neck stiffens even
more. The issue isn't so much "don't
fight." It's "use your head, not your emotions." We just
finished watching a couple of western movies. In those, the
"hot heads" always end up getting killed or hurt badly when
they fight. It's the ones who stay cool, though determined,
who draw quickest, shoot straightest, and hit their target.
So in this sense, acceptance doesn't mean to take off your
guns. It has to do with fighting cool and not dis-easing
yourself. Yes, PD is stressful. But if you dis-stress
yourself over it, you will shoot yourself in the foot, for
sure!
Chat
Room Edge
of the Forest Home Page
(Note:
What follows is not meant to imply that it's not OK to
feel sad or grieve or feel angry over our losses. But
these emotions can take over and make you feel out of
control. Some of this we can deal with ourselves, but
some of it may be due to biochemical changes.
If you are dealing with intense and prolonged
anger, sadness, or depression, please do seek
professional help.)
A "New" PD Symptom
It
Isn't Fair!
--Going
with what IS rather that what Should be
Wanna talk about it? How do you deal with stress? Do
you feel you are accepting your PD, or are you struggling
with it? Click HERE
to join the conversation on the Edge of the Forest Message
Board.