"Lose the whole world and find your soul." --Henry David Thoreau
I'm reading a book right now by one of my new favorite authors, Rebecca Solnit: A Field Guide to Getting Lost. It's a thoughtful, engaging collection of autobiographical essays that explores wandering, being lost (in several different senses), and how we deal with the unknown in life. I've only read the first chapter so far, but I already feel drawn into Solnit's words and world; there are so many thoughts and ideas that resonate with me in this one chapter alone that I feel compelled to share.
Feeling "lost" is something that I've carried with me for a long time, probably since age 13 or 14, for several complicated reasons (luckily for you, I won't go into that now). Being struck with the constant pain and swelling of RA at age 18 compounded those feelings--within myself and in the now even more frightening and uncertain world around me. And I'm sure I'm not the only person living and struggling with a chronic illness who feels lost some or even all of the time.
One of my favorite quotes (so far) from the book is this one:
"Leave the door open for the unknown, the door into the dark. That's where you yourself came from, and where you will go." (Solnit, 4).
The uncertainty after an RA diagnosis
When I was first diagnosed with RA, a scared and clueless teenager, I felt very much like I was being shoved through an open door and into complete darkness. It was not a place where I wanted to be and I desperately longed to run back through that door into the light of my young, pain-free life. But for whatever reason, and I nearly drove myself crazy trying to find answers and meaning for this devastating turn of events, I could not go back through the door. I was forced to stumble forward into the darkness of disease and fear and pain and unknowing.
Which of these things was the worst to wrestle with at the time? It's hard to tell and often changes, depending on the day, my mood, my memory. The physical pain was excruciating and debilitating, and the fear and confusion I felt was intense, but I think it was my heart that felt the most pain and broken.
I was terrified about what was going to happen to me, and deeply devastated at the thought that this horrible, body and mind-consuming "thing" very well might never go away. I remember feeling so completely deserted, desolate, dark, and lost.
The darkness of RA, the "mystery" of it, and all of its unpredictable uncertainties are not pleasant or positive things to experience, of course. The not-knowing is one of the main things that I really hate about the disease. I feel like I'm constantly walking (or limping?) on eggshells, gingerly trying to make it through each day without some new pain or RA-related misery striking my fragile body.
Will I contract another serious and/or painful autoimmune disease? Are all of these drugs I'm taking actually hurting me? Will cancer eventually triumph over my weakened immune system and ravage my entire body? Will I be OK a year from now?Will I be able to walk tomorrow?
Such questions, or "mysteries," are seemingly endless. Most of the time I'm able to push the questions and fears into the dark corners of my mind and leave them there, otherwise I know that they would swallow me whole and make life unbearable. They may be compartmentalized and hidden--but they never leave. The darkness is always there.
Solnit, however, encourages us to embrace the "darkness" and unknown in life and I do try hard to see it as something positive and even necessary--even those maddening mysteries of RA. It's often when I'm feeling vulnerable, hurt, raw, and fragilely exposed--and lost--that I'm my most honest, true self. And that, I think, is definitely worth something.1
"Never to get lost is not to live..."
Have you shared tips on how to manage RA with anyone before?