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(Dedicated to Barbara and Leslie, who loved and lost Spectre, along with us. Thank you.)

Remember to love deeply and hold loosely. – Gussie Fauntleroy

Fly Spectre Fly!!

What I didn’t want to cover in my last essay about Spectre was that, although his body was unable to function due to the melanomas wrapped around his jugular vein and intestines, he was not ready to go. When we prepared to euthanize him, we gathered in the remote, upper field – our animal graveyard, where the bodies of our beloveds returned to the soil. Moving a dead horse is not an easy task and the death ritual has to be planned in advance. The backhoe has to be ready to dig the hole, right then and there, to bury him. If a horse dies in a stall, you have a serious problem on your hands.

When Keith inserted the needle to euthanize Spectre, despite David holding him, Spectre boldly tried to walk on. Two men were nearly unable to keep the needle in his neck. Barbara and I stood by in horror at the scene where our veterinarian was trying to end the life of Spectre, our beautiful, mighty Patriarch of the barn. Finally, Spectre went down on one knee; he needed to be completely overpowered to go down. He demonstrated to me what the body is capable of: that the body wants to live at any cost, whether it has melanomas strangling organs from the inside out, or not. In looking back at the trauma of the spectacle, I saw Spectre’s warrior nature. I saw his power and I saw his terror. With Spectre’s strength, he could have overpowered us, but he just walked on – always a gentleman. Spectre didn’t go gentle into that good night.

In my last blog, I did not talk about the emotional cost of keeping my body alive. I did not talk about the intermittent, insidious bladder spasms that often leave me soaked in urine that inevitably accelerates skin breakdown. I don’t like to complain about the small stuff; I just do my version of walking on. I believe much of my suffering so far has been necessary, humbling me, stripping me to my basic core. I have learned that when I can love myself with this illness, I can love myself wholly and in that way, the process becomes a holy practice. The true love of my life has been my inner work which extends to my work with others, so they can also access that holy state of being. This illness has served my highest soul’s desire and for that I am deeply grateful. I am not special; it is just my time and I have said yes to the Universe. Everybody will, in one’s own time.

When I listen deeply to my bladder, I hear that it is trying desperately to expel the catheter, the foreign object that has invaded it for the past six years. In the vernacular, my bladder is pissed off. When I realize this, I have compassion and know that my body is not my enemy, but my advocate, and a damn good sport at that!

I didn’t mention my extreme diet and protocols I have followed for the last thirty years – the daily green smoothies I force myself to swallow, knowing that they make my skin more resilient to heal the inevitable pressure sores from sitting twenty-two hours a day and the multiple injuries I am sustaining more frequently, due to my body’s increased structural weakness. The disease progression continues, despite my efforts to enter remission. I am constantly strategizing on how to prolong my life, while lessening the suffering. For me, it is a Sacred practice chosen by my soul. I know that, because my ego would never freaking choose this!

I refused the traditional MS drugs, because I did not want to suppress my immune system, which was the best the medical profession had to offer this unrelenting, mysterious illness they call primary progressive multiple sclerosis, or PPMS, and have no clue how to treat. I searched for healing on three continents over twenty-five years, both alternative and allopathic. My main criteria was that it had to resonate as true healing, not tricking the body. In retrospect, many of my friends who attempted the mostly ineffective MS drugs have more debilitating symptoms today, due to the disastrous side effects, without having slowed the disease process, as promised. I don’t feel righteous or resentful; I feel tremendous heartbreak watching the physical devastation unfold in those I care about and for those who courageously watch mine.

We are all just walking each other Home – Ram Dass

Ram Dass says, when we live more from our souls, then death becomes just another moment. As we become initiated by life: either due to body breakdown through illness, injury, aging, death of a loved one, or even our beloved pets dying when we are young, we learn that we are more than this vehicle we call our body. As we meet our initiations and move through the anger and fear, we can begin to live more from our Souls.

If my beloveds experience me only as my physical presentation, the loss is devastating. If we have a soul connection beyond the physical my process can also be awe-inspiring, because paradoxically, as my body deconstructs, my spirit grows, exponentially. I am left with gratitude as it has helped me grow patience in accepting my circumstances with Grace and dignity. (If you are reading my blogs, you are likely in the latter category and you are being initiated right along with me. Thank you for that. It is clearly the road less traveled.)

We tried any experimental drug available on Spectre. Like progressive MS, there is no treatment for progressive equine melanoma, at this time. We would have extended his life at any cost, however I am now learning that more time does not necessarily equate with more quality of life. I came to realize that by prolonging Spectre’s suffering, I was avoiding my own grief at his expense, not an easy realization to hold.

Fortunately, for our animal friends we have euthanasia to help them avoid needless suffering. Some of my Buddhist friends reject its use believing that all suffering, in animals and humans, is necessary for our evolution. Every animal communicators (those gifted individuals who can speak to our beloved animals “on the other side”) whom I’ve read, or spoken to directly about euthanasia, have, unequivocally, expressed our animal’s gratitude to the humans for helping to end their suffering.

I believe animals are here to teach us humans. Many states have begun to offer aid-in-dying, which is popular with over 60% of the people. The qualification process is arduous for those facing death, but empowering once completed. Now we have the choice to discern what resonates for each of us as ethical and true to help our physical bodies come to completion, gently.

Six years ago I was told that my kidneys were going to fail if I didn’t allow a urinary catheter to be inserted permanently. I agreed, because I had places to go and people to see! There is a cost for going against nature; the contraindications need to be considered. My bladder revolts at times resulting in spasms (mentioned above) and urinary tract infections. Constant use of antibiotics can result in resistance leading to superbugs. Kidney failure, aspiration pneumonia, and sepsis are common causes of death, when allowed to follow the natural progression of the illness. One doesn’t die from MS, one dies from “complications from MS.”

As we evolve as a culture and there is less fear around death, more options for supporting this sacred transition are becoming available to ease one’s suffering. When the body is ready to complete itself and turn from the physical toward the soul for animation, other initiates will appear. Perhaps they will be in the form of friends, family, those being trained as death doulas and midwives. As the Feminine rises, there will be less fear around choice, and the desire to control other people’s bodies will be seen as archaic.

There is a time to walk on and a time to take a knee in surrender to the soul’s desires. May we be granted the Wisdom to hear our  inner guidance and the Courage to follow our own Truth.

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The beauty of horseback riding is that you need to learn how to be in complete control while at the same time in complete surrender. It’s a condition you cannot explain until you have climbed on the back of a horse and held the reins in your hand. – via obsessionreflection

Spectre and Clarice

I thought of Spectre as the Patriarch of the horse farm, the head of our horse family, the alpha of our herd, both equine and human. He was the most beautiful horse in the world to me and still is, in my heart. Since he was a thoroughbred stallion when we got him, being gentle was important for us novice riders. Spectre was a paradox; he was both gorgeous and powerful with stallion lines including a big, thick neck and he knew how to strut his stuff, yet he was compliant and sensitive and wanted to please. It’s as if he knew his power and used it judiciously. David bought him for $500, because as many gray horses do, Spectre developed melanomas. The primary tumor near his lymph node was wrapped around his jugular vein, so it was inoperable. We adored Spectre with all our hearts. The previous owner told David that we might have five years with him and that was exactly what we had.

Horses were always special to me. As a young child, I started taking riding lessons at the same stable where my mother had ridden a generation earlier. I treasured her English riding boots she gave me and kept them most of my life, despite being two sizes too large. By twelve, I had a horse of my own and during graduate school in New Orleans, I exercised people’s horses at City Park Stables. Horses were in my blood.

Being able to finally have my own horse farm was a dream come true. Our barn drew an extraordinary community of riders, horses, and dogs. We began learning dressage with Spectre until we found out that he loved to jump! Our close friend, Barbara, a professional jumper, showed him in his first jumping competition ever and he won a blue ribbon! He was a natural, but mostly he was a natural born lover.

Little did I know that a few years later I would be diagnosed with a life-threatening illness as well. I don’t have melanomas, but I do have a progressive, neurological illness that is slowly deteriorating the musculature of my body and has landed me in hospice at 64.

80% of gray horses eventually develop melanomas, but Spectre was young when his developed. Everybody loved Spectre, but more importantly, everybody respected Spectre.

The last time I was thrown from a horse, it was from Spectre. He’d been a stallion for most of his life, but a well-behaved stallion. People who know horses would smile at that statement. I was riding Spectre in the arena with a friend riding Jasmine and little did we know, Jasmine was in season. Usually Spectre was disciplined, and riding with other horses wasn’t a big deal, but I guess he was strenuously trying to contain his enthusiasm and gave the slightest little rear end bunny hop and I was instantly sitting in the sand of the arena. Realizing something was wrong, Spectre turned his head around 180° and looked at me. Thought bubble: Hey, what are you doing down there?

Only 15% of people with multiple sclerosis have as progressive a form as I developed. When I was 33, subtle symptoms began, but weren’t physically evident for another decade. In 2001, my horse Ransom broke away requiring me to catch him when I noticed that I could not run. I would be diagnosed two years later and the physical decline would be rapid.

Spectre’s last day

During our fifth year together, the melanomas were surrounding Spectre’s intestines creating a blockage. Keith, our beloved veterinarian, put on a glove up to his shoulder and relieved Spectre of his life-threatening impaction. David would have happily done this daily if Keith agreed, but he told us Spectre needed to be euthanized. Not wanting him to suffer and knowing that melanoma was a progressive disease, we scheduled it for that evening. Spectre’s appetite was unaffected, so on his last day with us, Spectre was given as much grain and carrots as he wanted. I wonder if he sensed our sadness as we celebrated our five short years together.

A decade later I found myself in a similar predicament. Muscle weakness became evident in my gait first and spread through my body, mercilessly. Peristalsis diminished from my esophagus to my intestines. Eventually, bowel problems similar to Spectre’s and difficulty swallowing would manifest.

I have a high tolerance for suffering, because in my heart, I believe it can be for a greater purpose when the suffering is emotionally regenerative rather than avoidance of the inevitable. Learning to discern the difference has been both rigorous and liberating. The feelings of helplessness from having a terminal illness only became bearable when I realized I could choose some of my circumstances.

Due to the slow progression of this illness, I often feel like a correspondent reporting from a war zone hoping to educate and empower others about their choices.

Update from the war zone– I have been choking while eating and needing help eliminating for six years. Despite the choking, I have chosen not to have a feeding tube, choosing quality of life over quantity. I designed my diet to strengthen the mitochondria of my cells, hoping it would clear the illness, but it hasn’t. I began to see that there is a greater plan at work for me and for all those whose lives I touch so deeply and being a reporter from a war zone is a large part of that plan. A feeding tube and a colostomy are not in my plan. To protect my kidneys, I agreed to a urinary catheter six years ago. Moving around with a catheter is something I’ve learned to live with; it is acceptable, despite having pulled it out once, accidentally. If you can imagine pulling a balloon through a penis, it was almost that bad. Wars zones elicit graphic images and dying is messy.

Being unable to cough or blow my nose, I have decided not to be resuscitated should I have a recurrence of pneumonia; drowning in my own fluids is not a form of suffering I need to re-experience. Images of waterboarding and other torturous methods come to mind. Inserting a nasogastric tube is one of the most painful and common procedures performed in the ER. Experiencing the suction machine was similar enough to determine a redline for me. So, no more 911 calls or ERs. If it were to restore me to a healthy life, that would be different.

Being virtually quadriplegic and living alone is not for most people. Fortunately, I have had the internal and external resources to pull this off. I have a care team of exceptional people who support me in this experiment. I have the opportunity and the joy to affect people all over the world with my writings and conversations.

I have learned a great deal from this curriculum from the inside out. I believe everyone has the sovereignty to choose for themselves how to live and how to die. More opportunities are being made available to empower those who choose to use them, from DNRs to MAID (medical aid in dying).

I believe as we evolve, we live more from our hearts (souls) than from our heads (egos). I know this, because my head would have given up long ago. Being a psychotherapist, I have come to understand that people make the best choices they can based on their level of development. We all have consequences for our choices, both good and bad– that’s how we evolve. In my heart of hearts, I believe that is what we are all here for.

I feel comforted knowing that the aid in dying law is passing state-by-state. If one meets the rigorous criteria to determine eligibility, it can reduce needless suffering that often plunges the dying and their families into helplessness and debt.

Nobody wanted to see Spectre suffer needlessly. He taught me a lot about having the courage to make the hard choices, despite my grief. I believe we humans have the same right, when death is inevitable.

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Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. more...

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