Stuck in the Middle

"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.  The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiently;...who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly."

                                                    - Theodore Roosevelt, from his 1910 Man in the Arena speech


"I want to be in the arena.  I want to be brave with my life.  And when we make the choice to dare greatly, we sign up to get our asses kicked.  We can choose courage or we can choose comfort, but we can't have both.  Not at the same time." 

"Once we fall in the service of being brave, we can never go back.  We can rise up from our failures, screwups, and falls, but we can never go back to where we stood before we were brave or before we fell.  Courage transforms the emotional structure of our being.  This change often brings a deep sense of loss.  During the process of rising, we sometimes find ourselves homesick for a place that no longer exists.  We want to go back to that moment before we walked into the arena, but there's nowhere to go back to.  What makes this more difficult is that now we have a new level of awareness about what it means to be brave.  We can't fake it anymore.  We now know when we're showing up and when we're hiding out, when we are living our values and when we are not.  Our new awareness can also be invigorating - it can reignite our sense of purpose and remind us of our commitment to wholeheartedness.  Straddling the tension that lies between wanting to go back to the moment before we risked and fell and being pulled forward to even greater courage is an inescapable part of rising strong."

                                                        - Brene Brown, Ph.D, LMSW, "Rising Strong"

When I first found out I had Lyme Disease and began learning about the controversy surrounding it, including the lack of acknowledgement by the medical community and lack of coverage by insurance companies, I was floored - and so incredibly confused.  I remember talking to an acquaintance who had been struggling with Lyme for years and saying to her, "But wait - this can't be true...how can this be?  Why aren't people screaming?  Why are people putting up with this?  Why, why, why????".  I remember she just looked at me and said, "It's just he way it is and there's nothing to be done about it.  Who wants to sign up to be the poster child for Lyme Disease?  Not me."  

In that pivotal moment, completely contrary to a reaction even remotely matching my normally private and non-confrontational self, I decided that in order to help others navigate this hell, I would do everything in my power, including the job as poster child, if necessary.  Come hell or high water, I would create enough noise and commotion that Chronic Lyme & Co. could no longer be ignored.  Have I lived to regret that decision?  Hell yes!  I'd be lying if I said no.  But ultimately I know I can never go back.  Too many people are suffering, too many lives are at stake.

But I'm not going to lie -  it's a struggle.  Some days I just don't feel like putting a smile on my face and being brave.  Some days I long desperately for my old life, the life before Lyme where I could hide behind my armor of ideal mom, cute outfits, tidy house and perfectly organized linen closet.  Showing this much vulnerability is brutally uncomfortable.  Some days I just want to blend in and fit in like I used to in the old days, the days before Lyme took over my life, both physically and emotionally.  

You see, I'm stuck in the middle at this point.  The shininess of my newly gained enlightenment has worn off and I'm still struggling.  Have I made progress?  Yes.  But my transformation into a beautiful butterfly still feels like it's a long way off.  I had no idea of the tenacity and cunning of the beast I was up against when I began this fight.  And perhaps that was for the best because I may have just admitted defeat from the get go. 

I've always been a people pleaser, never one to stand out from the crowd or intentionally ruffle feathers.  The polarizing nature of Lyme, coupled with most people's low tolerance for talk about illness or pain or struggle, makes for a recipe for quite the opposite of pleasing anyone.  I've found that most people will tolerate it for a while but tire of it pretty quickly.  They want to hear about your happy ending, yes, but until that happens they'd rather you just keep it to yourself.  

And I can't say that I blame them - I would probably have the same reaction in their shoes.  But even though I still fall down, get frustrated, impatient and want to give up....I know I never will.  I will keep finding the courage to stay in the arena.  I will keep being brave.  And someday soon I will rise strong.