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There is a crack in everything. That’s how the light gets in. – Leonard Cohen

Throughout this journey of chronic illness, I rarely speak of the nearly unbearable grief I’ve experienced, as my body slowly failed over many years, and progressed rapidly over the last decade. I almost exclusively describe the gifts I’ve received by facing the challenges with determination and courage, not so much, the heartbreak.

My children were three and nine when the symptoms began. I remember driving my son to elementary school and praying that I would be able to meet his and his sister’s needs through high school, while my children were completely dependent on me (and I, probably, on them). Who would drive them to school, accompany them to soccer games, dance performances, and Mardi Gras parades? Who would talk to the teachers when they had conferences in school or problems with their friends? How would I be able to go to therapy three times a week to heal myself emotionally to better meet their growing needs? My life had become totally unpredictable and everything was on the table for catastrophic change.

When the first symptom began during the late 80s, my first thought was for my children. What kind of legacy would this leave  them? The terror I felt about not living up to my greatest responsibility and privilege was more than I could bear, or so I thought at the time. I’m sure the specter of desperation followed me and shaded every choice I made during my 40s and 50s. Not all of my choices were well thought out and generous. After all, I was losing my physical strength that had carried me through many challenges – if I could count on anything, I could count on my body – and my body had been the vehicle for much reliability and joy in my life.

I began running road races with my daughter when she was three during the heat of New Orleans summers, I swam laps for miles and miles to restore some semblance of well-being and hope for the future. I believed if I could heal, it would be in the water. This does not describe the radical lifestyle changes I made or trips to India for stem cell treatment and many other alternative treatments.

When I see the look of shock and despair on people’s faces when they meet me, see my profound physical limitations, or hear my story, my common line is, “My life is not a tragedy.” Well, it isn’t, but it has been marked with many tears, regrets, and feelings of despair along the way.

My hospice workers tell me I am a legend around their office, my friends tell me I am a hero. Well, I’m here to tell you I have made desperate choices in my life that have deleteriously affected my children, I have lived with a great deal of fear, depression, and cowardice. I’ve cried an ocean of tears. No one facing catastrophic illness or injury should ever feel reticent about expressing their grief. It is through the cracks where the light gets in.

I have grown through this illness. I probably have grown some heroism. I am also human with human frailties. Human nature is an incredible thing. If I can do this, anybody can do this. About that, I have no doubt.

half-cracked-3-500x360As they say in Louisiana, “it’s a gone pecan.” Now you have to pronounce the nut like the previous word so that they rhyme. It’s gone and nothing can bring it back.

I wrote a blog entry about The True Meaning of Healing. I worked long and hard, doing most of the editing myself, manually, which is not an easy feat these days. I felt proud and encouraged. I chose to delay the publishing for a later date to allow for more time between entries and to give myself a rest. Yesterday, the blog entry about the meaning of true healing disappeared into thin air. I waited for a caregiver to try to save it, but unbeknownst to me, it was merely a phantom of the draft I had laboriously crafted. With one click, it disappeared into cyberspace forever.

I spent the evening in what Elisabeth Kubler-Ross clearly delineated, bargaining, depression, anger with a faint hint of acceptance on the horizon, perhaps in a day or two. Not only was my beautifully roasted pecan gone, but the uncertainty of how this could possibly happen has stayed in the air. What is to keep it from happening again? I am once again thrust into the experience of impermanence. The ego vehemently affirms the existence of matter, no matter what.

During week two of The Presence Process, we are asked to spend the week sensing how we become triggered by reflections in the present moment that have roots in the past. Even though I am on week three, I am experiencing the felt-perception of loss. The sense of helplessness was overwhelming after I acknowledged that the blog entry was gone forever. Nothing is going to bring it back, nothing will restore the nerve pathways from my spinal cord to my muscles; certainly not during this lifetime or in this body. Gone pecan.

All that can be done is mourning. People avoid mourning at all costs. Without the ability to mourn, one cannot move on into something greater. In my meditation, unrelated to the presence process, I heard that it was necessary to strip me of the healing blog entry, in order to be raw for another writing about the lack of physical nurturing in my early life. Did I like to hear this? No. Does it make sense? Yes.

It would be easy for me to go into the story of, “I have lost so much, why now this? Why me?” And that story leads into, “it’s just not worth it, why don’t I just give up now?” Fortunately and unfortunately I cannot get away with this archaic sort of drama anymore. I have developed too much presence for that.

So, for now I will continue to mourn my blog entry, the wonderful quote I selected that introduces the entry and the energy it took to complete it mostly myself. That is all gone and I will listen to the nudging of my inner voice to bring my rawness, vulnerability and authenticity to a gut wrenching entry about Touch, or the lack thereof. So, goodbye to the gone pecan. I hope you will be happy wherever you are, lost in cyberspace.