Over the past few months I have been creating a new website that is an outgrowth of the work started here at Conscious Living-Conscious Leaving.

In Tom Robbins book, Jitterbug Perfume, (one of Ilene’s favorites) a character is advised to die with a heart lighter than a feather in order to assure entrance into heaven.

In the last year of Ilene’s life, she did her best to accomplish that impossible feat. How did she do that?

First, Ilene sought to be fully present in each moment. The moment might be filled with joy, grief, anger or any other feeling. It made no difference what the emotion was. Her intention was to allow the experience of the moment to fill the cup to the brim—and overflow if necessary.

If the instant was one of joy over something, she celebrated it fully, and invited the child inside herself and others to come out and play with full-out innocence.

If the situation aroused anger, she would express that fully, then let it go. She strove to release the anger and move on to more important issues in relation to people and/or her soul journey.

The moments most challenging for her were the continual and ever greater loss of functions in her body; a body she cherished and in which she took enormous pride for its litheness and athleticism. It was amazing to watch how she faced a loss, such as the ability to hold a fork between her fingers, let it go, and move on. Occasionally she would share her mantra aloud: Grieve the loss; let it go; move on; closer to “home”.

Second, was her absolute belief that our souls come to earth from another realm. That realm is one of pure energy, of which our individual spirits are tiny fragments of a vast whole that is beyond our comprehension.

Third, she believed we are all here to learn lessons we have chosen in between lives to advance our soul growth.

Lastly, the key for Ilene was to let go of all attachments to the physical and emotional realms we think we know as reality and ego.

Did she succeed? No, and yes, to the best of her self-acknowledged limited ability. But if her heart was not lighter than a feather when she transitioned, it wasn’t from lack of will. Certainly it was not any heavier than a feather. She did everything she knew how to do to be free to float through the portal for her final journey; a journey she relished with curiosity and anticipation.

NK

Anyone who knew Ilene knew her delightful, self-deprecating sense of humor. In one of her writings, she described it as “light and racy, dark and dry … like a rich wine.”

For her, nothing that might elicit a laugh or a chuckle was off limits. More often than not (though not always), Ilene greeted each loss of a physical function with a wisecrack. She used witticism as a way to keep the disease from controlling her and as a way to find meaning from the disease. She often referred to them as gifts.

By October 2005, Ilene could no longer move on her own from the wheelchair to the toilet or back. Someone had to lift and transfer her back and forth. She wrote that the “privacy of knowing that my bladder and bowl history are not my own.” Here is how she found meaning in this humiliation.

“The gift here is that my best laughs of the day are often those moments when I am lifted from my chair to the toilet seat. The incredulous humor of telling someone else, my left foot is on its edge, preventing me from standing. My right knee is too close to the bowl tipping forward and off balance. Both legs are bent and you must lift me higher to get them straight and locked. My pants just slid down to my ankles, making it impossible to be lifted while I am being held up. My outer pants have been lifted up while my underpants remain around my knees.

“It’s laughter that gets me, gets us, through the days and nights.

“Laughter. God’s answer to misery.”

NK

Feel free to respond

One of the many things I learned from Ilene over the course of our dealing with ALS was the importance of grief and grieving IN THE MOMENT.

Perhaps it was her training as a psychotherapist and life coach. Perhaps it was her intense desire for honest expressions of feelings. Ilene had the ability to recognize a loss of any kind, even a small one, and grieve for however long it took to acknowledge the loss and move on.

The grieving in the moment was freeing for her. It allowed her to move on to the next challenge. Even more, the practice of fully grieving small losses enabled her to confront bigger losses with greater confidence and less baggage carried over from the small losses.

About mid-way through the progress of the disease, Ilene came up a mantra to help her grieving process: feel the pain, grieve the loss, let it go, move on. In the last year or so of her life, she added two alternative endings: Let the child play or closer to home.

For her, the “child” was her spirit/soul. It was that ineffable part of her that would find something funny to comment on in the middle of the most difficult situations or feelings. I am sure it was her ability to authentically feel the pain and grieve the loss when it occurred that made it possible for her to let it go and move on.

I must admit, I rarely practiced her mantra through the course of the disease.

The result was that I held on to those feelings (and sometimes still do) until after her passing. Consequently, my grief in the months after her passing was often overwhelming, almost paralyzing.

My intention at the time was to be strong for her. After all, she was the one dying, not me. Yet in making that choice, not only did I make it harder for myself afterwards, I robbed both of us of the opportunity to be fully conscious of my experience in the moment. She did not get to share, not only my loss, but also he freedom that comes with the recovery.

I share these thoughts now, not out of guilt or regret, rather as a way of acknowledging the pain of a lost opportunity for even greater intimacy; to grieve the loss and let it go; to move on and let my spirit/soul play with the next challenge.

I know Ilene celebrates that.

Nick

"Practice dying," Plato said from his deathbed when his students asked for one last lesson. He wasn't suggesting suicide attempts. He was talking about learning how to find purpose and completion with your life and how to let go of attachments.

Until we are past retirement age, most Americans don't think about dying unless it is right in front of us, or in front of a friend. Dying is something that happens to someone else. Not me ... just yet.

If you had a week, a month or a year to live, what would you shift to the forefront?

In South Korea there is a thriving business in staging mock funerals for college students, including wills, burial clothes and laying in a coffin. See (The Young and The Departed). The intent is to fully imagine your death and thereby sharpen your true priorities in life.

Isn't that the essence of conscious living, to know your lifetime priorities and act upon them? How freeing is that?

Nick

I have just put together a book of Ilene’s poems, art and writings. I am self-publishing it through lulu.com.. The book is a nice complement to the conversations between her and Carol. It contains both writings and art work from just before her diagnosis up until a few days before her transition.

BTW, the title stems from our working together on the narrative I am writing about our experience with ALS. I had thought of it as Ilene’s (and mine and Margarita’s) struggle with ALS. Several months before she died she convinced me that she saw it not as a struggle but as a dance. She wanted the story we were working on to be seen as a dance.

She had that rare ability to turn a dismal vision toward a life-affirming direction.

Her book reveals much about how she achieved that shift through many detours, dead ends and retracings of her path.

Look forward to much more frequent posts in the future!
Nick

We are going to change our podcast so they will be free in the near future and easier to download. The whole download/purchase process was just too complicated. We’re looking to create a different revenue model that will support the site and will let you know when the change is made--hopefully within the next week or two. Nick