Sunday, February 17, 2013

The Energizer Bunny

“Resilience is accepting your new reality, even if it's less good than the one you had before. You can fight it, you can do nothing but scream about what you've lost, or you can accept that and try to put together something that's good.”
Elizabeth Edwards (UK)

"You're my hero, you know. You just keep going and going and going," they said to me. And I nodded. And I smiled. "What else am I supposed to do?" I asked to no one but the air, the wind, the trees and the grass. It was a rhetorical response meant for deaf ears. Because the alternative to "going" is an option no one is willing to consider.

What does it mean to be resilient? What would I have to do to be considered otherwise? Friends, women and family look at me sometimes with wonder and awe. They show respect for my suffering and admit their admiration of my talents and persistence. And I am truly grateful and humbled by their praise. But I can't help but wonder, who or what defines strength? And why is it something to be admired?

Was it resilient of me to see a therapist for 4 months after my miscarriage?
Was I strong when I broke down in my car at the CVS parking lot because I saw three pregnant women and wondered why not me and then debated whether or not I should speed my car into oncoming traffic?
Was I heroic the first, second, OR fifth time (yes it truthfully has been that many) I quit my "real"job to be able to manage the other full-time gig known as scleroderma?

Or was I weak? Is asking for help an admittance of failure? Is the consideration of suicide an admittance of worthlessness? Is quitting or running away a sign of giving up?

I don't know. Perhaps.

But perhaps the strength lies in the fact that instead of filling the anti-depressant prescription, I wrote poems instead. Perhaps my resilience is defined by the fact that I drove back to work and taught three more classes with a broken heart and smile on my face. And maybe my heroism is found in the acceptance of my limitations and my willingness to let go.

Either way, I still can't help but be confused when people tell me: "You just keep going." Because truthfully, "What else am I supposed to do?"

I never did any of the things I did with the intention of being admired, much less become anyone's hero. I did them because like my mother says "no me quedaba de otra." (I had no other choice.) I could put in a new set of batteries and keep beating my erratic drum, or I could stop. Stopping was not an option.

So instead, I beat my drum loudly and march to its beat at a pace that is comfortable for me. I write to survive. I laugh to keep from crying. I love to feel at peace. If that is resilience, then yes, I am resilient. If that is heroic, then yes, I am heroic. And if strength is defined by my ability to get up every morning and do it all over again and again, then yes, I guess I am strong. I do it not for praise or admiration. I do it simply for no other reason than the fact that I really don't know what else I'm supposed to do.

But perhaps too, that day in my car, the many times in the ER and at the hospital, at least once a month in my bedroom and even a couple of times in my classroom, when I let the tears fall and tell no one but God and the silence that I can't do it alone, that I am the most resilient of all. Sometimes, the most heroic thing we can do, is admit that we are weak.

Wednesday, February 6, 2013

What Could Be, A Lesson on Perspective

“We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” 
― Abraham Lincoln

In the last two weeks I have had my 4-6weeks check ups with both my cardiologist and rheumatologist. And I am happy to report that those had to be the two easiest and quickest visits of my life. I spent more time in the waiting room than I did with the doctor. My cardiologist declared me "the healthiest patient they have to keep seeing," and my rheumatologist said I didn't have to see him again until May.  Woo hoo! This may not seem like much to the average healthy person, but for someone like me who has had to go to the doctor on average 2x a month for the last year...this is HUGE! It means that my life is not in imminent danger of ending. :)

Despite the pitfalls, challenges, ups, downs, turnarounds, detours and chaos I am truly blessed. I am in a great place. Before seeing my rheumatologist this week, I was kind of in the dumps. I wasn't feeling well and my mood sucked. I was upset because I was feeling that life was unfair (yes, I know I sound like I'm 12). I felt that there had to be more than waking up every morning and trying to convince myself that I was lucky to be alive. That "all would be well" if I just kept repeating it to myself. I felt sorry for myself and wanted to sulk. I almost didn't make it to my Dr.'s appointment thinking "what's the point?" But, I'm glad I did.

I'm glad I did not because of what he told me and the clean bill of health he gave me, but because of what I was reminded of while in the waiting room: How bad this disease could and probably should've gotten by now. Five minutes in the waiting room and I saw several disfigured hands, a woman in a wheel chair, two oxygen tanks and a sea of sad eyes. Sad eyes that stared at me discreetly looking for my ailment. And yet, five years post-diagnosis and my physical appearance has remained relatively unscathed.

Have I had my fair share of scares? Yes.
Are my insides scarred and damaged? Yes.
Is my disease still active? Hell yes.

But, I choose to see the roses and not the thorns. The roses are the fact that 10 years ago, a scleroderma diagnosis was a death sentence, but not anymore. The roses show me that I'm blessed to be able to type this post because my fingers still work. The roses ask me to smell them with a big deep breath to appreciate the fact that my lungs still work well on their own.

At the beginning and end of every's about perspective.

And today, I want to give you some. While in the waiting room, realizing what my life COULD be like and taking a moment to appreciate what it is, I decided it would be a good thing to share this perspective with my readers.

I took it upon myself this week to photograph the significant parts of my body that could/should be affected by scleroderma and I compared them to pictures of what it has done to others. Below are some of those images....just so those of you who don't live with this or any other illness can understand and appreciate the little things that even I take for granted sometimes.

What my arms/hands/legs COULD look like. Notice the
shiny, tight skin and curled fingers (movement is extremely

What my arm/hands DO look like. ("normal") Ams
used to be shiny but have returned to "normalcy."

Finger tip ulcers from Raynaud's- what it COULD be.

Notice the two small "pits" on middle finger and pinky.
Almost harmless as long as I keep them clean and avoid the cold.

What my hands/joints could look like.
Joints are permanently damaged and skin is tight.

What my hands do look like/ joints are unaffected,
minimal but unnoticeable skin tightening.

What I could have all over my face. Though this is not painful...
it ain't cute either.
I only have a few spots, notice the large one on the cheek,
a few on the nose and the camera didn't capture the rest.


So, I guess what I can take away from all of this is that when people tell me that I "look good" I will say thank you and mean it, and not get upset because yeah...I do.