Your body is the church where Nature asks to be reverenced. ~ Marquis de Sade

Dispelling the Cultural Phobia Around Death

When faced with the inevitable challenges life brings, I have tried to meet each trial head-on, once I was able to tap into the hard-earned resources I have acquired through the years. The diagnosis of progressive multiple sclerosis in 2003, presented me with the greatest ordeal I would have to face in life. Mysteriously, when the symptoms began in the late 80s, I instantly grasped the profound level of disability that would eventually evolve from this illness. This resulted in the greatest fear of my life, yet I slowly began to move forward with the willingness to simply not know.

I and my family are coming to terms with the shortening of my life that used to be an abstract concept, but has become very real recently as my organs are beginning to shut down. Little did I know when the symptoms began, there was no treatment for this neurological disease. Meeting my death at 64, has presented my greatest challenge as well as my greatest opportunity. There may be no treatment for many of the these devastating neurological illnesses, but we ARE developing options to meet an inevitable and sometimes premature death, with more compassion, awareness, and humility. As our culture begins to meet death with greater acceptance, we are better able to care for ourselves and for each other. In doing so, we will be better able to meet our final transition with Grace and awe, knowing we are coming face-to-face with the Sacred.

Meeting the Unknown

When I recently realized my organs were shutting down, it took a while for my mind to grasp the significance. My modus operandi for meeting each physical challenge has been to just keep moving forward. Most of the acute obstacles to moving forward were in the form of injuries that had to be addressed immediately. Concurrently, there was the constant background noise, the signs of a continual downward trajectory in functioning. Injuries were easier to manage, because they had: the initial injury, a recovery time, and then finding a new baseline. Functional decline was more difficult to deal with. I was continually strategizing: being vigilant to avoid further injury, listening deeply to my body to what was wanting to be heard, and attending to the changes required. Due to the efficacy of this strategizing, I, and my beloveds, had become lulled into a form of denial that somehow strategizing could actually keep my body going, ad infinitum.

At this sacred time of shutting down a vibrant, generous, and loving life, I have begun my life review, which is a common practice once the shock and grief abate. Looking back, I am aware that I have lived a good life, yet as with any life well lived, I have also made many questionable and downright poor choices along the way. However, with this broader perspective, I am realizing that there really are no mistakes. Each supposed mistake was a learning experience that provided an opportunity for acknowledgment, forgiveness and led to more educated choices in the future. For me personally, it is about discerning how to live my life with greater integrity, authenticity, and grace as I move toward the doorway we call death.

It was merely ten days ago when it became obvious that my digestive system could no longer process foods as it had. Concurrently, my appetite plummeted and it was clear where I was in the trajectory of my life – that I was facing my death. I began to grieve acutely, revealing an understandable level of denial. I am aware of the many times I told clients that some denial is necessary during times of great change. I recognize that I could not have lived such a regenerative life without this ability to compartmentalize. My body was no longer wanting the fuel that would sustain it, so I knew my days were being drastically shortened and that I needed to consider my options carefully.

The Many Options Open to Us Now

Since Colorado passed the end-of-life options act last November and I had gone through the arduous process of securing the prescription, I had the comfort of knowing I had the safety net it afforded, should I begin to suffer needlessly. Another option would be to do V-SED – voluntarily stopping eating and drinking, a process my body had already begun. Although not eating felt voluntary on a certain level, I knew in my heart of hearts that if I were to live in full integrity, it would mean following the direction my body was leading. MAID and V-SED are both viable options, but they just felt too abrupt for this body at this time, given my lack of pain and suffering, at least at this time.

I knew my soul was ready to go and I wondered what it would take for the rest of me to let go and follow. My body was already beginning the process of letting go, but my mind had been strategizing for many years in order to live alone with this condition that demanded continually being in survival mode. Rejecting food appeared voluntary on the surface, but what I knew internally and was afraid to admit, was that it actually was involuntary and I felt to force it would be out of integrity. I knew my soul was ready to let go, to move on to my next adventure of going Home, but I felt conflicted, because it would cause others so much pain. Was I betraying my beloveds? Was I betraying my body? How could I possibly share this with others and feel their grief along with mine, when each of ours was so raw?

As I am sitting with the predicament, a new option has appeared. I could eat and drink only when there was the desire and open to my body’s natural timing. I could find the courage to completely let go of control, and see how this new way of being could serve me (and also serve others). Taking this option meant suspending any sense of knowing and opening to my loved ones’ love and generosity when I am the most vulnerable! This meant that I had to fully embrace being the recipient of so much love that it would stretch my remaining feelings of unworthiness that I knew I still harbored. To me, receiving love and not feeling deserving represents the last frontier of my arduous and sacred Work.

It is essential to clarify that this slow moving illness that is accompanied by very little physical pain is extremely unusual. If I had unbearable pain, acute cancer, ALS, or if I had less support or fewer resources, I would choose MAID in a New York second, as we said in New Orleans.

Given my propensity to struggle with letting go, I decided to write a love letter to my body/mind in the hopes it can finally relax and let go. Although it is very personal, I graciously want to share this with you, my devoted readers. Thank you for your unyielding support over the past months and years.

Love Letter to My Body

My dear loving body/mind, my precious vehicle for this lifetime,

You have served me well. Thank you for being a body with so much endurance and so much forgiveness. I am humbled at your service.

You have taken so many insults, so much abuse, and you have met it all with so much grace. You have had your bones broken, twisted, forced to go beyond your capacity, but you have served us well.

You grew two of the most amazing children I can ever imagine. And from them came amazing grandchildren and perhaps there will be more. I, Aliyah’s soul, will be watching, listening, ever giving my two cents, but always loving.

You have weathered quite a curriculum to teach me how to better love and that I am worthy of being loved. The former, I came wired with the ability, but the latter was more hard earned. I guess that is why it’s called a “curriculum.”

You have fulfilled your Sacred commitment to me with generosity and grace – I release you with loving gratitude. You are free to do what bodies do. You have served me to the utmost and I can’t imagine any better body to carry me through this life.

I will not force you to eat when your system does not want to digest. I will not trick your body with medications, I will let you shut down with as little struggle possible. I will help you let go, if your mind pushes you beyond your limits due to the guilt from perfectionism that has plagued you, or an unrealistic belief that you are necessary to lessen others’ grief. I will not abandon you. I will help you let go of needless suffering with whatever resources I have available to me with the same generosity you have afforded me.

Your mind has served me well. It has helped me be the first person in my family to have an advanced degree and use that in service to others. What better joy in life can there be? You have helped me to strategize an impossible curriculum with impossible circumstances. Without you I could not have accomplished living alone unable to move from the neck down for as many years as I have, touching so many lives. I learned to receive love and the greater challenge was I learned to ask for help.

Without my body and mind, I would have left long ago. We did really really well!

It is almost time to completely let go, to scatter joy to the earth, the air, and water, especially the water. We can know that we did what we came here to do. We can let go and let Love!

Weekly, Crestone’s Threshold Choir comes to sing a cappella at my bedside. Here is an example of one of their songs:

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