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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.

“Pain and happiness are simply conditions of the ego. Forget the ego.” -Lao Tsu

Late 80s

Late 80s

 

Jordan was born in 1985. His father and I were deeply in love and Jordan was born with much love and readiness on the part of his immediate family. His sister Casey, had been asking for a baby sister or brother for years. Being nearly seven years old when he was born, she was allowed to hold him and watch over him as much as a seven-year-old could.

There is an expression that true happiness is when you realize your children have grown up to be wonderful people. My son is a wonderful person. He is deep and sensitive, intelligent and he loves his mother very much, which is a quality I find admirable. Smile.

When his father and I separated, his heart was broken for the first time. No doubt this catastrophe in his life also fed his depth and sensitivity. Who knows why “things” happen to people. I never believe these things are arbitrary; not marriages, divorces, illnesses or addictions for that matter. (For an evocative read on this theory see Robert Schwartz’s books on soul plans. They changed my life.)

During my last essay, when discussing my difficulty breathing, Jordan offered a quote from the Smashing Pumpkins:

A pure soul and beautiful you, don’t understand
Don’t feel me now, [I will breathe, for the both of us]
Travel the world, traverse the skies
Your home is here, within my heart

This, and much more, is what my son offers the people he loves. I have come to terms with many of the losses from this terminal illness and have transformed those losses into gains. The hardest is losing physical proximity to my children. When Casey, my firstborn, left for college I had to prepare emotionally for years to deal with this grief. I talked about this grief, performed rituals surrounding my perceived loss and wrote about it. Probably, the deepest teachings on grief surrounding my children have been from five discarnate monks who imparted these profound words. Instead of paraphrasing, I will print their original, penetrating communication:

Loved one, you must rest assured that death and loss are an essential piece of life that is so often ignored in this time on earth. Not only will your family be ok, but they will be matured through this gift of sharing your experience. Death is a beautiful path home to a place of peace and joy and magic. We are bothered with the sanitization of death from life as though it were a disease or a plaque or scourge or evil. It is none of those things. The false sense of immortality that cripples the souls of so many will not cripple your family. Your family will always be more aware than others, more present, more able to love and forgive. Please understand that through what they have witnessed in you, they will be much more aware as human beings with a broader perspective on life. We suggest again, although we know it will take much will power (of which you have an abundance), that when walking through the valley of the shadows of fear, you tell yourself “this is not real”. Right now, your fears of death and for your family are fears of the unknown. That is truly what they are. Just like the primal need for survival, the fear of the unknown is powerful. And the lower self can chime in and say “what will they do without me?” The truth is that your power becomes a part of all of them. Your words and your presence and your attitude and experience filters through them even now, but in death, you are sealed into their souls. This is not what we say to sound “Pollyanna”, but this is truth. Real truth. Try to resist the “boogey men under the bed”. Your loved ones will miss you and they will grieve, as is healthy for the emotional body, but they will rebound with your power and take that into the remainder of their lives with them as a part of their constitution. Continue to show your grandchildren your hope and power over mind. They will not be lost in a quagmire of sorrow or loss or feel abandoned. They will always be strengthened by your courage and their lives changed by the acceptance and awareness of the transition of the body as a natural flow of life and love.

Whatever one thinks about how these teachings were imparted, one cannot discount the quality of the message. I have found tremendous comfort in these words and hope others, my beloved readers, will as well. I think it was Ram Dass who said that we are all just walking each other Home.

Love and grief are two sides of the same coin. – Derived from talk by Stephen Jenkinson 

GriefThe hint of a life-threatening illness when I was thirty-five years old was almost too much for this young, vibrant woman to bear. In retrospect, I have deep compassion for my younger self’s initiation into this accelerated curriculum and I now know how essential it is for my soul’s evolution. Coming to terms with my mortality at that age was a tall order, living a mortal life while being in touch with its transitory nature was almost more than I could bear and has taken me more than a decade to integrate.

When I really think about it, how can we live fully if we cannot contemplate our impermanence? How can we fully live if we can? The human condition is quite a paradox. This is why mystics acknowledge that being human is not for the faint of heart. There is crescendo and there is de-crescendo, inhaling and exhaling. How do we  be with this human condition that feels so out of control to our egos without becoming completely overcome with fear? How do we not connect these fears with the cultural epidemic of our time – fear of death? How do we hold death with equanimity, as truly a part of life?

What I have come to understand is the only way to hold both is to feel  it all. Feeling the difficult feelings in our culture is not encouraged. Numbing or distracting behaviors are pervasive. Allowing oneself to sink into the grief of this illusory existence, to essentially face one’s fears of death is not an easy undertaking. The pun is intended. In my experience, only by following grief and despair to completion can the heart lighten and the healing power of humor emerge.

Grief is better tolerated than despair, in my experience. Despair implies hopelessness. I guess the question is: “What are we hoping for?” Are we hoping for immortality? It is painful for me to be with someone who is dying, but wants to live at any cost. The ego wants to convince us that if we succumb to these feelings, we will never get out. There are so many archetypal dramas in literature that demonstrate this primal fear. When one finds the courage to bear the grief, liberation is assured. Allowing oneself to fall completely into grief is the only way through this dense, vibrational field. Despair can be treacherous, becoming an impenetrable wall if you are at all ambivalent about your leap. I liken it to bouldering. You cannot have ambivalence when jumping from one boulder to another; you cannot look down, you just leap focusing on the boulder ahead.

Stephen Jenkinson, once the leader of palliative care counseling at Mount Sinai Hospital in Toronto, has written extensively about the prevalence of “death phobia and grief illiteracy – how they distance us from one another, our planet and our world crisis.”

Grief can become a wall or it can be a portal to a deeper way of Being. Once we have come to terms with the illusory nature of the personality as our totality, the fulcrum tips. Only by leaping fully can our toe touch the boulder of the numinous.