Thursday, August 18, 2011

The Wild Side of Bedridden!

The other day, when I was still in the hospital, a visitor from Occupational Therapy asked me a question. The question was this, "So, what do you do for hobbies? And how have your hobbies changed since diagnosed with lupus?" This is always a loaded question for me. I have the long, 72 hour version that my mind quickly runs through, and then I have the short, 3 second one - "I write, I read, I do some painting..." The three second one usually satisfies people, but it always leaves me a tad bit empty.

I think, when I take a serious and honest look at myself, I can truthfully say I have come to peace with the changes in my life. But when the question gets asked, I always have this desire to share who I used to be. Which leads me to believe that there is some small part of me that still identifies with the "healthy" me. Maybe a little stuck in wanting to finish the "I am a..." sentence instead of just leaving it at "I am".

This is a round about way to get at what I really wanted to write about this afternoon - but here goes. The therapist persisted, and was curious as to how my painting had changed since becoming ill. I told her that prior to getting sick, I did mostly watercolor, fine detail, mostly botanical. With the onset of peripheral neuropathy, I no longer have the control to do this kind of work. I then told her that it was actually a good change, because I had always wanted to delve into the world of acrylic and become a little "more free" in my work. Which I have - and I enjoy immensely. What surprised me was my next line. It went something like this, "Now I am free to paint outside the lines...which pretty much sums up my life these days."

I've thought a lot about that response laying here in my bed this week. Awfully bold statement coming from someone whose bedridden! I have this funny little voice in my head that says, "You show 'em girl! Live it up, be wild...break a few rules!" And that funny little voice sounds a bit sarcastic. Some may think that when stricken with tragedy or devastating illness, it give us permission to no longer abide by "the rules". I've met some of these people in my life. Some are angry, some are rude, some use their illness as a means to be hurtful or get what they desire or think is "rightfully theirs". This is not at all what I mean by being free to go outside the lines.

What this means for me is that there is no right or wrong anymore. There is no should have or should be - there is no supposed to. There just is. I can take what is happening to me in this very moment and I can do one of two things. I can either fight it, or I can accept it. I think we have a hard time with the accepting because we refuse to let go of what we "think" the situation should be. I've said this many times before - accepting it does not mean waving the white flag of defeat. It means letting go and making the most of this moment - which moves us to the next moment in a much more graceful manner. Taking good care of this moment - holding it in our hands as we would a crying baby - is THE BEST way to care for the future. It makes so much sense to me - if my soul is crying for hope, or friendship, or peace, or the end of suffering - why would I ever ignore it for the regret of the past or the fear of the future. Take hold of your own "being" and love it as you would that crying baby. Nurture it. Calm it. Coddle it. Do what ever it takes to be present in that moment to be with your pain.

Today has been a test for me in this regard. Having gone backwards some from a couple of days ago, coupled with having my family gone for the evening, I have had a lot of time to just "be". I remember Pema Chodron talking about these times as being times of "training to be a warrior". I struggle with the warrior part - because I don't really like to think of my life as being a battle or a fight (thanks to my therapist!). But I do like the part about being in training. These difficult days are kind of like tacking an extra two miles on the end of a ten mile run - they make the next time just a little bit easier. I also believe, with all that I am, that suffering - any kind of suffering - makes us more compassionate people. And that is a very important goal in my life.

I've also been "hung up" with wanting to write in my blog, yet being affected by pain, medication, fatigue, fogginess... so I have chosen not to. I think this is contrary to my theory on painting outside the lines. What the hell? Spell a few words wrong, jump around a bit, forget the conclusion or maybe even just write for "me". At least I'm being real - at least you see me in the moment...

Whatever that is!

- Posted using BlogPress from my iPad


annaburesh said...

I loved this mom. I love seeing the real you poor out. I'm so greatful you've taught me to live this way. It really makes life that much more enjoyable. I love, you!

annaburesh said...


Theresa said...

Hey....I'm ALL ABOUT bad spelling these days....IT'S REAL LIFE!!!!!
I love you too honey - so much my heart tickles.

Anonymous said...

Hey, girlfriend! I'm back! Catching up on your postings (they tell me how you're really doing, on the inside, where it counts). I carried that darn Pema Chodron book you sent me everywhere I went, every day. And some days, I even read and reflected :-). Love you,

Theresa said...

Love you beyond measure, my dearest of friends. So glad you are home. So glad.

Lindsay said...

Thanks for writing this.
I just turned 29 and have degenerative spine (and some autoimmune stuff but its manageable) and have recently gone back on disability - this time possibly for good. Lying here (I can't sit up long anymore) these past few weeks I've been coming to terms with the fact that my old, active life is not coming back.
I'm trying to find hobbies to pass the time that are somewhat inexpensive and can be done from bed (I do write and am kind of artsy, but do neither well). That's how I found your post :)