Will I go back to life? Will I be captain again?
If you can go back to life, if you can keep on being the captain on board, then life is fantastic, then life is an adventure, your own and unique adventure. You dance with life, you dance with the Universe.
From Invisible by Hugues De Montalembert
The strategies and techniques I've used to manage chronic disease have changed through the years. Now, I'm often introspective and reflective -- rely less on the advice and optimism
of friends -- more on what I've gleaned from experience. Sometimes my brain
takes a trip and speeds down a dangerous highway without exit ramps. Then I activate internal navigation systems. I have no desire to wander off into a disorienting maze of emotions.
Music of all types is a fundamental tool in my survival kit. Music reminds me it's worth the effort to fight back; it's an effective non-medical Rx. I've listened to Bach's Unaccompanied Cello Suites for hours. When fears begin to overwhelm me, I listen to those Suites transcribed for the Double Bass, recorded by the extraordinary artist Edgar Meyer. This C.D. was a gift from a friend who is a classical double bassist (as well as many other things). Absorbing the mournful but affirming sounds of the Double Bass is a soothing act of listening but carries significance beyond Bach.
Dance, especially ballet, also transports me. Ballerinas float and fly through their sequences. What they do is so difficult yet their rigorous training makes impossible movements appear natural. Ballet often makes writing seem a hobbled excuse for creativity. Deeply buried is the eager little girl I once was, devotedly taking ballet lessons. Ballet composes a spectacle of life suspended above and beyond reality. I felt that as a child when I saw my first productions of Swan Lake and then Sleeping Beauty.
Chronic illness has been the architect of my internal navigational systems as much as upbringing, cultural heritage, relationships and travel. As an unwell person, every new day demands I take a leap of faith to go forward -- both sacred and secular. When someone untouched by illness asks why I bother to go on, I deflect the question. I doubt any explanation would make sense to those who need to inquire. I have an unshakable faith in many things -- enduring friendship, health professionals who care, the majesty of words, the healing power of unconditional love, intimacy, theater, dance, music, the prayerful act of reading literature and poetry with serious intent. And I have gratitude for the surprises I have received along the way and savored.
Finally, there's my singular truth: I refuse to be deafened to the symphony of living by the noisy power of a mysterious disease.
I gave up the quest for a simple and clean diagnosis years ago. I stopped dreaming about fleeting remissions. As I maneuver through it all, I search for new avenues toward grace and peace. My goal is to live, not just cope or survive. I've observed the world through a prism of illness. But I have retained images from times when disease has taken leave of me. Together they form a collage of experiences --people, places, dreams, stories, and visions.
I've seen courageous behavior in other patients, and in their loved ones and friends. For decades I've observed the concern and commitment present among members of the nursing profession. I've seen men and women who choose to triumph in their lives, even if they'll never defeat disability or illness. I've been moved by acts of unexpected compassion. It's not easy to accept a condition that won't go away and that resides inside someone you love. Those who face down disease and disability with us, instead of abandoning or avoiding us, are my true heroes. Everyone is faced with challenges and disappointments. We develop systems of stable navigation to stay afloat. In better moments we conquer obstacles. I've learned to accept pain, and to welcome pleasure, to take delight in the day-to-day explorations of mind, time and place (even if only remembered or imaginary travels).
Remission occurs when disease disappears, as it sometimes does for shorter or longer periods. My remissions have become infrequent. I once called them vacations, now I call them interludes. Interludes don't qualify as full remissions but do provide a respite from the awareness of disease. Interludes evoke perceptions and emotions distinct from those when I observe the world wearing a patient's spectacles. However, times of wellness and of illness are equal truths in one valid existence - they're not unrelated entities. They've had to become partners to create one whole life. It's been worth the effort to sustain - this life has brought me to places of courage I couldn't imagine I would find. It's also brought tremendous disappointments, somehow survived. I've been granted often-renewed hope for the future, albeit with realistic parameters.
I retain a stubborn happiness about the hard job I call living each day, which appears to be as relentless a force inside me as disease.