Written by Kara Red Hawk and published in a Victoria (BC) Newsletter. It was inspired by (and originally sent to) a CFIDS discussion group regarding the different ways people look at having a chronic illness.
When we develop a chronic illness, it seems to me that we get caught
in a cross fire between drug and/or miracle protocols and people who
tell us we can "think" ourselves back to health. I don't buy the
idea that "attitude" alone will cure anything. There are just too
many "X" factors, for one thing. However, I do find that attitude
can *help*, if in no other way than by improving one's ability to
cope.
(If desire and determination were all that was required to attain a
state of physical well-being, I'd be on top of the world, doing the
things I so loved to do and which I miss every day, every minute,
with a longing that is so intense it's a physical ache.)
I've looked upon many phases of my life as a time when I had a
certain "job" to do. My "job" has been, more or less sequentially,
to be a good daughter, a good student, a good wife, a good mother,
a good employee. I've tackled these "jobs" with absolute dedication.
Now, it seems to me, my "job" is to be as healthy as I can be, and to
adapt to what I cannot (for the moment) change. So in a sense *I*
have become my "job", and this job merits as much dedication as any
other. So I don't view it as selfish that I make myself one of my
key priorities. After all, my well-being will affect not only myself
but my family and those others for whom I care.
Further on this theme, I feel that my attitude towards my illness is
of key importance. I can rail against it, ask "why me?". I can
surrender to it and say "OK, this is how I am defined", or "This is
what I have become." or I can decide that I will accept what is while
working at *changing* what is. I can opt to "ride" the flow of this
river, instead of trying to paddle upstream, while at the same time
determining that I will steer myself back to healthy shores if at all
possible, as soon as possible. I have "decided" that if I have *any*
say in the matter, I will not remain sick for the rest of my life. I
don't believe in "mind over matter", but I sincerely believe that in
accepting that coping with this disease as well as I can, and getting
as well as possible, I can focus all the positive energy I can muster
on establishing the best possible mental environment in which to grow
positive attitudes and a cautious optimism. For one thing, I am
trying to free myself of a veritable bevy of 'shoulds'...I SHOULD
mop that floor, I SHOULD attend this or that function, I SHOULD be
doing more with my kids...yet I know darned well that doing these
things, no matter how much I want to do them or feel I SHOULD do them
will only compromise my health.
(I use the word "illness", a term to which many seem averse, for two
reasons: first, it serves the purpose, and second, until someone
comes up with a better definition, to my mind that's exactly what it
is; for me to insist otherwise would be to lapse into denial, which
is not an emotionally healthy place for me to be. I prefer my truth
"straight up, no ice"; I was never any good at dancing around plain
fact, so it is far better I face the demons. It's amazing how often
they wither away as soon as I look them in the eye! It's why, for
example, I rarely use euphemisms. For me, once a truth is spoken, a
demon "named", it loses most of its power.)
By freeing myself of 'shoulds" ...... and of resentment, bitterness,
anger, denial, helplessness, hopelessness... I can devote my very
limited energy to establishing myself in a quiet mental/emotional
"place" where I can find the peace I need to work consciously at
making the best of the situation. To that end, I allow myself to
indulge in small pleasures, refuse to feel guilty for things out of
my control or beyond my capabilities, and purposely avoid anything
stressful that I can while cultivating or seeking out anything that
promotes a more peaceful state of mind.
I have had to admit is that while I have lost (or perhaps temporarily
misplaced) a great deal, I have gained something of tremendous value.
I've discovered a tenuous inner peace (something I didn't have time
for when I was healthy). I've had time to reflect on spiritual
matters and discover where my head is at in terms of myself as a
being, a separate entity, not a do-er, not someone else's ______
(fill in the blanks). I've learned to take great delight in the
simplest of pleasures where before it took something pretty spectacular
to catch my attention, let alone amuse or please me. I no longer feel
like I'm in a hurry. I no longer have the sensation (and I suppose
this is strange, all things considered) as if time were slipping through
my hands. This disease enforces a new pace; by not resisting it, I
have discovered that there really isn't any good reason for living
life in high gear. I hope...in my heart I *believe*...that one day
I will be well. And I pray that when that day comes, the lessons
I've learned, especially over the past three years, will stay with me
and make the rest of my life much more fulfilling and give it real
meaning.