I live in two different worlds.
I go from the rigid grid of avenues and streets in Manhattan, to the steep sinuous roads that carve through the valleys of a dense metropolitan area up in the Andes Mountains of South America. I go from sea level to miles up in the sky, where the air is thin. I go from rectilinear, modern sykscrapers, to rough, jagged mountainscapes. I go from a land of rush and constant over-work, to a place of laid-backness and slow living. I go from having to plan social outings weeks in advance, to being able to call up a friend and say, hey let’s meet for coffee in an hour! I go from summer to winter, and from winter back to summer, all in the very same day.
Many things remain constant, however, no matter where I am…
Every morning is a lottery.
Some days I can move, and other days I can’t.
When I can move, I start off my day slowly. I play with my dogs. I draw open the curtains. I pull the broom out from the kitchen corner, and sweep the hardwood floors. I don’t see these as chores, or as tasks that “have” to be done. I see them as a way to slowly stretch, and warm up, my body.
I notice the subtle difference in ambient air temperature. I appreciate the constantly-changing angle of the sunlight that floods the house. I listen to the chirping of a hummingbird in the garden…and, if I pay careful attention, I feel the buzzing of its wings.
On the days I can’t move, I relax, and enjoy the warmth of my bed and the multiple layers of blankets that cover me. I listen to music. I think. Most importantly, I don’t stress out. There is nothing that needed to be done in the next couple of hours that can’t be done later, I remind myself.
I connect with the overwhelming pain in my hands, a pain that feels like each and every bone has been broken. Even though it feels like I will never be able to move again, I know I will. I drift back to sleep. I dream.
Someone very close to me was diagnosed with a chronic, autoimmune disease this past year. I can see this person trying to hide her struggle; I don’t know if she’s trying to hide it from herself, or from the rest of the world. Having been in that very same place for so many years, I know exactly what she is going through. I know she has some unfathomable hurdles coming up in her future, but I also know that she is and will continue to be okay.
I don’t call her “hiding” out, nor do I cast undue attention on what she is facing. I do check in on her regularly, and let her go through what she has to go through.
While all of us who live with these types of disease stand to learn a lot from others who are going through the same thing, the most important steps forward are usually of a very personal, individual nature.
We can’t do it alone, yet we have to do it on our own. (Just one of the many paradoxes that becomes a daily reality when our bodies no longer move on command, and when our minds race in the confusion of knowing, yet not knowing, what is going on…)
I don’t deny my pain, but I do build a mental block. Something…anything…to give myself a respite from the emergency alerts that my body continually sends to my brain. I take a deep breath, and start my day all over again. I feel the crunching of my joints, and the instability of my limbs. I slowly let the pain filter through, past the numbness. I connect with it.
I no longer label my day a “bad” one, because the pain “is still there.” I broke that chain of thought many years ago, and I am all the better for having done so.
This is my body.
This is my life.
I refuse to stop moving. I know that if I stop moving, even if for just a few days, the delicate balance inside that I spend so much time and effort maintaining will go out of whack.
And when it does eventually go out of whack, as it always does, I take a deep breath, I smile, and I say: let’s do this (find that balance) again.
I’m always just a few steps ahead of the pain and inflammation. This thought used to stress me out, knowing that this marathon never ends. I have since gotten used to it, though, and tell myself that all will be well.
And I no longer feel like I’m kidding myself, as I once did in the past.
Everything is indeed okay.
All is well.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!