My Life as Story

For many years, I kept what was sorrowful in my life hidden, in favor of something more acceptable, but still it was usually too much for the person who'd asked a question as innocent as where do your parents live to receive an answer they were unprepared to hear.  I'd immediately recognize the expression of disbelief that would slip through without their permission along with their appraisal of me-- how much is she in need, for certainly there will be need under these circumstances-- and I'd feel that familiar ache in me that demanded no more questions which could further separate me from belonging.
I understand that people want to witness a beautiful parade, not a procession of tragedy.  Some days I wish that I could see into the future and disclose the happy ending that may allow people to feel more comfortable reading on, but I have no truths to offer.  I can only promise that something will happen. It always does.  Still I've finally come to realize that my life is sacred, and that any limits on it makes it all the more so.  There are times that I'd love to go to sleep and wake up on the other side of this nightmare with Aaron already healed from his disease, a bright future stretched out ahead of us; but I also desire to remain very present to the mysteries that will likely be illuminated through this process of reclaiming Aaron's health, and to the beautiful moments that remain ours each and every day despite our particular burdens.

As I sit down in front of the computer today, I wonder what I expected would be unleashed when I wrote about my mother's life and my childhood and my mother quest, and the state of Aaron's health crisis?  In the face of several recent incidents, I've begun to consider whether or not I should continue to write my life at all or instead write something that people find more palatable.  Should I return to drawers full of notebooks or to telling other people's stories for profit or writing fictional accounts that simply skirt the edges of my life? Can I still write with conviction and passion and dare I say it, pleasure, even when writing the stuff of sorrow, and even when I may be losing friends and readers, not gaining them?

I recently wrote a post detailing the days following Aaron's diagnosis with leukemia.  Though I rarely receive many comments on my writing, several people were in touch to let me know that they found the post too sad and too long to finish reading until the end. I meditated on these comments, mulled them over, pulled apart the issues, and finally concluded that these words may capture the entirety of my situation--it's just too damn sad and long.

With all of my secrets coming out as I write my life from its source to its current trajectory and Aaron's upcoming stem cell transplant, I have to wonder how many people would cross the street to avoid me if they saw me coming.  I recently cornered a friend in a Facebook chat after speculating for these past months why she, along with others, were conspicuously absent from this critical time in my life.  I told her that I missed her and welcomed her counsel, but even before I received her reply, I sensed what was coming.  She explained that what was happening in my life overwhelmed her to such a degree that she could not be present in my life.  She thinks of me often, she added, and wishes me all of the best, but reiterated that contact was not a good thing for her at this time. I replied that I wished it could be otherwise, but that I accepted her decision.  And with this, our little chat box disappeared along with any hope of what I most need--to be surrounded not isolated.

Another friend, an old friend, Tary, who has known me through many transitions, shared that her recent absence in my life was not simply due to the state of her own.  She confided that she did not know how she could help, or how much she wanted to help, or if what she had to offer would be enough and that this made her feel guilty and so she avoided me.  As more time passed, she felt guiltier still, and it took some time for her to push past her hesitation and assumptions about my needs and just resume her place in my life, the one she has always occupied, that spot which is unchanged by what is currently unfolding.  And in doing so, she has realized that I am the same woman she has known, and that her friendship is what I need most. She has encouraged me to use her name so that others may realize that they are not alone in their fear to approach me, and so I disclose her identity with permission and also gratitude.

It is a writer's crime to write.  Words are dangerous.  They reveal too much even when I try to protect everyone except myself.  And this I learned from yet another significant person in my life in the past few weeks.  I was given the choice to write about our relationship or have our relationship.  I was told I could not do both.  If this is the case, I will ultimately have no bonds or ties as I now write about almost everything.  Nothing is off limits.  So this leads me to an important question: is the very act of my writing about my life the thing that is driving people further from me?

When my friend, Lisa, suggested that we allow people more access to what was unfolding in our lives with Aaron's cancer and the upcoming transplant, Aaron hesitated.  He is by nature private and uncomfortable with the idea that anyone might feel compelled to help if they believed him to be in trouble.  A year ago, before I began to blog my story, I would have agreed with him, but for other reasons.  I have always been anxious at the thought of being perceived as different from everyone else.  This is a long-standing issue for me--not wanting to stand out for the wrong reasons.  I was always the girl with no parents, the one raised by her grandmother, and a crazy one at that.  I was the orphan, the one on public assistance, who only learned what this meant when a dentist tried to touch my breasts and told me how much he hated welfare patients when I resisted.  I struggled my whole life to escape being different.

From a young age, I noticed how much a person's demeanor changed when they heard even the smallest detail of my story or as my close friends have affectionately named it, my ordeals.  As I child, I understood that I was not the same as my friends, that having no parents was not something to claim outright, and yet I had no choice.  Everyone knew from the first moments of meeting me. Where is your mommy?  Where is your daddy?  And so I told them the truth.  She's sick and He's dead.   On some level, I was protected until my mother's death.  Even though she did not function as a mother, while she was still alive, I had still had one.   The morning after my mother's death, my grandmother gave me a note to show my teacher.  Michelle's mother is dead.  That's all my grandmother had written.  The teacher stared at me, looked deeply at this catastrophe standing before her without betraying any sign of emotion.  Instead she sent me to my seat where I remained immobilized until recess.  When we walked out the door, she returned the note to me.  My friends asked if was a permission slip.  I handed it to Keith as we sat under a tree.  He read aloud these written words of my situation.  None of us moved until the bell rang.

As I grew older, I told fewer people about my life.  I allowed my peers to speculate on my circumstances rather than offer them any details.  I learned to stay with those who had tasted some tragedy that prevented them from being in a glowing center stage.  Out of sight, out of my mind, my grandmother routinely told me and most days my life seemed manageable as long as I could keep my classmates out of my house.

This strategy worked until I reached college.  No matter how much I wanted to remain silent, people demanded answers to their questions.  Who are you and where did you come from?  How was I to answer?  After the first time I told someone that my mother had been dead since I was ten, and that I was raised by my grandmother, I never shared my life so bluntly, so directly ever again.  No, once I saw that first look of anguish, I knew I would never again distract anyone with such details.  I memorized the camps, and schools, and clothing and behaviors, and tried them on like the clothes I also mimicked, until I became someone I believed indistinguishable from all of the rest.  At times all of my new stories clouded my brain.  I no longer remembered who I was, only that my life was not right, and that I would be disfigured in their eyes if I was honest, and so I encouraged the stories to come forward, molded them for who I was with and what would suit them, please them even.  It did not take much for me to betray my life in this way.

The only way my story was revealed in those years was through movement.  I performed in as many dance concerts as possible each semester.  It was up to the audience to translate me in motion into something that stood for my life.  Whether or not the picture they formulated matched my circumstances did not concern me.  All the better that they should see me poised and in control and not the little frightened girl in an unfamiliar world.

Aaron first encountered me as a fellow dancer.  We fell in love over many months with very few words exchanged between us. Nothing could have been more perfect and yet this could not be sustained.  Eventually he wanted to know the facts as well, but by this time, I'd lost command of them.  He wanted me to return to who I was but who was that person and did I want her back?  I slowly began to reassemble my history only to fall headlong into my grandmother's theatrics.  She had stories of her own.  She'd been married more often than I knew and my biological grandfather died of Huntington's disease.  My mother had not been in an accident, but also had Huntington's.  And my father was not dead, but unknown.

The need to cultivate a new reality resurfaced but I kept no further secrets despite the contempt I felt for this news.  I was under shade at all times during these years.  I knew that people would wonder how Aaron could marry a woman who may die in such a way.  Perhaps people whispered it behind our backs.  Some told me to my face that I should never get married or have children.  What was the point?  My life was doomed.  But then suddenly it wasn't.  The gene for Huntington's had been discovered and I was one of the first in the country to be tested.  And I didn't carry it and so the legacy was over.  Though I rejoiced, I still was helpless before my past and could not breach it authentically with the words I'd been honing for other people's stories as a writer and editor.  It was still too much for me to make known.

When Aaron was diagnosed with cancer, I was the woman whose husband has cancer and I once again saw those looks that revealed pity and fear and gratitude that the person hearing it was not in my position.  And so we told no one unless it was essential and this suited us both.  When Sasha was conceived, things began to shift in ways I hadn't predicted.  He pushed out my stories as he carved more space for himself inside me.  Each week something new reentered my mind.  With his birth, even more came forward and I found myself writing my story with honesty for the first time.  I was writing my history and my motherhood, but my life was still compartmentalized.  Aaron's story was sealed until we realized that our lives were about to blow open.  Aaron had relapsed and there was suddenly a need to tell those around us so that I could protect him from infection.  I found it increasingly difficult to write with honesty and still somehow avoid something that influenced me nearly every moment of every day and so I also began to write about our cancer situation on this blog and recently on the site devoted to Aaron's journey.

For years people told me to write my life's story, but now that I am naked before you, do you wish my clothes back on, or even further, to see me in disguise?

If you are reading, let me know if this is the right path for me.  If you are reading, pass my blog along to others.  Please don't delay, don't use discretion, act with abandon from the heart.  Comment, ask questions.  This is my life.  Do you want to hear more?  If so, come and stay away and share your thoughts.