CAN'T...CAN'T...CAN'T...Is this my destiny with Cushing's?

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!