August 20,
2013
As I type
those words, my mom’s cheery sing-song voice comes to mind and I can actually
hear her say, “Can’t never could do!” I can’t
help but smile a little despite myself.
I believed her. I knew that I
could…if I wanted…do ANYTHING. I knew
that my future was limitless.
Inexperience
and childlike naivety is glorious to those of us who may now know too
much. We know too much about pain. We know too much about disappointment. We know too much about loss. We know too much about what we CAN’T have….what
we CAN’T do….what we CAN’T change.
No matter
how I endeavor to stay positive and focus on what I have to be grateful for,
there is forever a voice in the dark corners of my mind that feeds on my
resentment. It hovers and lingers in the
darkness that I push it into waiting for a chink in my armor of hope to creep
out of the shadows and wrap its arms of sadness around me. It offers me weighted shoes of gloom that
weigh me down and prevent any forward motion.
It is dangerous because it looms large just out of my line of sight and
swoops in when I am at my weakest. That
nasty little voice whispers that I have every right to be sad, angry and
hurt. It coos to me and says it is ok to
give up – who wouldn't given the same trying circumstance that I have been
given. It offers me excuses and pity and
welcomes me with open arms in to its lair.
But here’s
the thing…somehow the “light” of life is more powerful. It isn't that I don’t have an ongoing mental
list of the injustices that I continue to stack up on a daily basis – because trust
me – I DO! And the list is extensive – but
I digress!
The thing
that I wanted to write about is that despite being keenly aware of my
limitations, I am learning that I don’t have to simply give up on the things
that I want to do…I just have to RE-ADJUST the way that I think about doing
them. Don’t get me wrong, it doesn't
work with everything on the list, but it can work. Let me give you some examples:
1.
In March
my husband and I visited Key West for the first time. It was beautiful and we wanted to walk and
explore the whole town. My physical
limitations became evident quickly and I was almost in tears as I realized that
I couldn't do it. After a few blocks I
was in pain and ready to quit. I was
disappointed in myself and what I was missing out on and I was wracked with
guilt for potentially denying my husband the experience. THE RE-ADJUSTMENT: We rented scooters and took Key West by
scooter! Not the way I planned or
wanted, but I didn't end up back in the hotel in bed! It took a failure and made it successful with
a bit of an adjustment and a little understanding for myself.
2.
More recently, my husband invited me to go
back-packing with him. I was raised in
Colorado and love all the outdoor things that make living here so great. Skiing, Camping, Hiking, Biking, 4-Wheeling…you
name the activity – it was simply part of who I was and therefore a major part
of who I am. Cushing’s made so many of
those things impossible. So, when my
husband talked about me joining him for the weekend, I was thrilled and
deflated at the same time. I knew that I
simply couldn't physically do it. A 4
mile hike in, carrying everything and then not having any of the “comforts”
that make my pain tolerable for 3 days…it just isn’t possible. As a matter of fact, it would be dangerous
and stupid. THE RE-ADJUSTMENT: We simplified, and went for only one
night. We chose a short and moderate 2
mile hike that wouldn't (so we thought) be so bad. As it turned out, the first ½ mile was a
pretty brutal increase in elevation.
After 30 minutes I was in tears and certain I had made a terrible
choice. RE-ADJUSTMENT #2: We slowed down and took it step by step and
stopped frequently – which resulted in us seeing some pretty spectacular
things! AND we made it to the camp and
enjoyed the weekend.
So, what I hope someone might take
from my ranting is the understanding that we may have to accept the “CAN’Ts of
CUSHING'S” in our lives as our reality.
It is what it is. BUT, we can
READJUST our thinking to accommodate the limitations and find compromises that
may actually still allow us to participate in life in a manner that is comparable
to our ideal.
I believe that Cushing’s has given me
something that I would have otherwise missed in life. I have an appreciation for good. I face pain, depression, inadequacy, fear and
frustration on a daily basis. I look
those negative things in the face and I feel them. But as a result I am so grateful for the good…sometimes
small, even minute, but GOOD and worth being grateful for non-the-less!
So here’s to accepting the bad and being
that much more grateful for the good.
Here’s to learning and growing and constantly RE-ADJUSTING!
