Thursday, July 14, 2011

Yes, it hurts. What else?

I’ve been thinking a lot lately about pain.  Not the mystical, sweeping pain of the misunderstood emo generation, but chronic physical pain.
A recent conversation with an acquaintance has haunted me for several days.  This woman has a 17-year-old daughter with lupus.  While this is a horrible situation that cannot be fully understood by anyone who isn’t living it, I am always saddened to see how this diagnosis permeates every moment of their lives.  This child feels well, her labs are all within normal limits, and she wants to get out and experience some things.  Unfortunately, her mom has convinced her that anything short of sitting in a darkened room will be the genesis of her untimely demise.
I’m certainly not arguing that she shouldn’t be cognizant of her condition and make some changes to her life.  But I believe wholeheartedly that to give oneself fully to a diagnosis, to the exclusion of any other interests, is a greater death sentence.
This might seem arrogant coming from me, an apparently healthy woman, so let me clarify my position.  I was born with spondylolysis, a spinal defect that often leads (and in my case, led) to a painful condition called isthmic spondylolisthesis beginning in childhood.  I didn’t find out about this defect until I was 20, because when you have pain every minute of your life, you don’t know any different.
imageAfter a few years of nightmarish surgeries, here’s my robo-spine.  I’m sorry I can’t offer you any of the classically compelling 20-year-old-on-a-walker pics, because I enforced a strict no-cameras policy during that period of my life.
Suffice it to say, I know pain.  I have known it for all my three decades, and I will know it for every minute of the rest of my life.  I have lived the reality of having pain be your last fading thought as you drift off to sleep, and the first thing to penetrate your consciousness when you wake up.
Robo-meIt would be very, very easy for me to give in to the pain.  To sit down, draw a disability check, take some medication to ease my awareness of the hurt, and devote my grey matter to a constant awareness of it.  Every time I sit in my spine surgeon’s waiting room, I am surrounded by folks who have gone that route.  (If there is a new receptionist, they usually look past me to find the patient when I sign in.  I guess there aren’t many people in my condition striding up to the desk in pretty shoes and smiling a hello.)
Obviously, I didn’t choose that path.  And that is the point of this post: that people have a choice.  Your body may not work like everyone else’s does; you may have to deal with pain or limitations that others don’t.  But you can still choose to move beyond your diagnosis and live - truly live - your life.
How?  Well, I’m no expert, but here’s what works for me:
1. Understand what “chronic pain” means.  Our bodies have evolved into this amazing feedback system as a means of protection.  Pain exists as a warning - “that hurts, you should stop doing it.”  That’s why we pull our hand out of the fire, immediately relax the strained muscle, or stop running when our bodies have reached their limit.  Pain is your brain’s text message to the body to change your situation immediately to avoid further injury.  Chronic pain, however, has no purpose.  It’s the body’s broken RSS feed that keeps posting the same junk over and over again, no matter how many times you try to unsubscribe.  That means chronic pain requires no response from you.  Nothing you do is going to change the pain, and you are not in any imminent danger of further injury, so in this case the pain is simply something to be felt.
2. Recognize that all pain is not bad.  There is pain with injury, with deterioration, with inflammation.  But there is also pain with growth and strengthening.  Get past the fear of sensation that paralyzes us into inactivity.
image3. Find your strengths (I promise you still have some) and play to them.  You may have physical strengths that allow you, with awareness and sensitivity to your limitations, to perform physical feats you never thought possible.  Exhibit A: this photo of me with my best friend, Tricia, after completing my first triathlon.  This is nine years after my most recent spinal surgery.
You may find that your strengths are not physical.  Great.  Focus on your career, your art, your parenthood, or whatever fulfills you.  Just do not allow yourself to sit around ruminating on what you’ve lost.  There is plenty left to occupy your life.
4.  Make a choice.  There are days when I would prefer to sink into a funk, when it just seems too hard to see the good stuff waiting outside the fog of pain.  But then I remember: I’ve made the choice to be more than my pain.  That choice has allowed me to achieve things I never thought possible and to live the life I want to live, not just the one I was stuck with.  So even on the bad days, I continue to make the choice.  And at the end of the day, I’m always glad I did.
Chronic pain is a relentless instructor who molds and morphs your body and mind into something you don’t even recognize.  The onus is on you, the sole inhabitant of your body, to take what’s left and make it your own.  You can make it something you like, or something you despise; something you celebrate, or something you fear; your vessel for navigating this world, or your prison.
I don’t understand why, but in this instance the easy choice always seems to be the more difficult one to make.


  1. Great start Danielle! I especially love the detail of the pretty shoes.

  2. Hmmm. Maybe that did seem a bit out of place. The effed-up spine community is chock full of ugly orthopedic shoes. I can frequently be spotted in spine-friendly shoes, but I was attempting to make the point that I am able to venture out into form over function at will.

  3. I actually read the entire post. In short, that means it was interesting enough to keep my attention. To be perfectly honest, I just set up this google account and was exploring some of its capabilities when I found you as a member. The sad part about my social life is that of the 5 or 6 people I consider worthwhile acquaintances, you are the only one I have found on this site. Anyway, just figured I would try my hand at starting up a 2 year old discussion!