Being disabled is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit. Having been disabled for the past three years and counting, I have experienced this slow decline and all the various stages that I have gone through with a growing since of shame, equal parts horror and more guilt than any mother could ever ply against their child.
At first I worried that my affliction would lead my ex-husband to take my child. Then I worried and still do about the financial strain my continuing illness places upon my family. All the while living in a quiet shame that somehow I am not spiritually aware enough to simply overcome a genetic disorder I had successfully lived with for twenty-eight years prior to my downward spiral. Being part of a spiritual path that firmly believes, as do most spiritual paths do, that the mind coupled with the power of spirit should be capable enough to overcome the illness within has helped to heap upon me more and more shame. The fact that the majority of “friends,” I had before my illness became debilitating, shun me has only helped to reinforce the idea that I would still have these “friends” if my spiritual being was stronger than it is. It doesn’t help to know they secretly believe that I am not spiritually whole because my diseased spirit is being manifested in my body. I know they believe this, because before my own affliction, I would have thought the same thing too. Talk about reaping karma!
As my body’s weakness overcame me, the doubts of my mind regarding all that shame and guilt slowly shackled my spirit. I, who was entrenched in the study of all things spiritual, fell into despair wondering why I should bother to continue to feed a spirit that in truth was black with shame, guilt and dis-ease. No one else bothered, why should I? I was left with two good friends, my husband, son and one service animal. And they, so engulfed as was I, with the continued battle raging in my body, didn’t have the time or the energy to encourage spiritual practice. I watched as not only was I abandoned but my family turned caretakers were abandoned also. Now I was part of a family once rich in spiritual bonds whose ties now withered and dried up while the vital spiritual nourishment abandoned us as our outer support system vanished into their own healthy and happy lives.
I don’t want to sound bitter, though I am a bit; moreover, I want to investigate this phenomenon that has played out in my life. Having been asked to submit a paper for an anthology about disability and spirituality being encouraged eagerly by my sister to do so, I suddenly found within my heart layers upon layers of innate knowledge of myself, my family and current and lost friends, I was unaware had taken root. Most surprisingly was the revelation that my spirit was bound.
It wasn’t bound by another, someone casting upon me some evil spell; although to blame my condition on another would be a relief. It wasn’t even bound by the limitations of a body racked by a genetic disorder my very birth had given me. No, the usual suspects were to blame and a mirror in my bathroom revealed the perpetrator. Me. Myself. I. Dia. Marcassa Nettles. Lydia. I shackled me.
After literally YEARS of counseling others to watch out for the demon within, my own demon was set free when my body broke. Would it have been released if my family and I had experienced a greater support for our outer circle of friends? I don’t know; maybe, and that is a thought to expound upon on another day. More important at this point in my life is this: my own personal demons have been given free reign of my heart, my soul, my mind, my psyche for three years. If one were to calculate the damage in terms of monetary loss, it would be in the millions. The landscape of my mind reminds of me of a woman standing at ground zero of the tsunami that rocked Japan. Around her every surface that can be seen is nothing but a living graveyard for all the people who were not found. My soul is this decimated. At my feet buried under named and unnamed rubble is my future, my dreams, my hopes, my plans, my family, my everything.
It is almost as if the shock and awe of the physical tsunami that shook my life, took three years to process and suddenly I stand able to clearly see the ultimate damage has been done not to my body but my very essence.
The interesting result of this slow awakening is that my center being, where will resides, feels like it is warming up in the most pleasant of ways. My body today is wrecks in the aftermath of having another allergic reaction attack my immune system. It feels like a hangover has descended despite the fact that alcohol is no longer a pleasure I get to imbibe. My will, my sacred self, and my heart are all warming up despite this crippling disorder of the physical. It is as disturbing as bulldozers must be, coming in to remove the rubble after a catastrophic event. It is necessary but all that scrapping and moving seems to be further destruction, even if it is a necessary kind. And it is still painful, that rubble used to be a healthy thriving place, imperfect perhaps, but a place of my own, nonetheless. Seeing it scrubbed clean is in a way another type of death in a landscape where death has reigned for fall too long. I do not want this further pain, even if I believe it is a healing one.
As these rumbling become a tornado in my stomach reminding me that all is being swept clean so that all can be rebuilt, I am still shocky. Loses of friends that I have avoided facing are suddenly over turned dirt that oozes with the stench of death. The loss of my career is like an uncapped gas leak revealed by the rubble to rise and smell of sulfur bringing to mind thoughts of hell itself. The strain upon my mate is laid bare as the rubble is cleared and the nervous belief that I might actually die is plain to see on my son’s young face. Yet, already, the demolition has born some surprising results. I am reminded that some of my things lost to the disorder have been replaced by friends willing to pitch in a few dollars on my behalf. And I find that gift has helped restore some of the mental capabilities I lost early in the battle of my physical dis-ease.
I can write again. The words are like over turned treasures to a bird in a newly plowed field. They are easily accessed and quickly digested and placed upon a page for general consumption.
The shackles are still there. I am unclear how far I can take this turning and changing landscape. I am unsure if I can really rebuild my spirit not only thrive again but to be strong enough to face an uncertain physical future. I still struggle mightily against the demons of shame and guilt and failure and shame. I am not clear what to replace those thought patterns with or even how my beliefs dove tail into all that I have experienced.
Is this a private battle, which I write out and keep for myself? Do I dare expose myself again? After all I did once and feel as if that one tsunami washed all my friends away in its destruction. Will the same freak occurrence happen twice? If I find myself hospital for days again or at home recovering and unable to write will I continue to feel that my value as a person has dropped off and re-shackle my emergent spirit? Can I really afford to further damage a spirit that is trying to heal? Can I afford not to try?
With that last question my physical body literally trembles and the answer is clear to me. No. I can’t afford NOT to try, and, as it has been my life’s motto, I can’t afford not to share. I have never felt that the things that have devastated and shaped my life were something to be experienced and absorbed into my spirit and soul and alone. I have ever felt that I was put upon this earth and experienced the evils, ills and mistakes I have because by my sharing someone might find hope that was denied me, help that I had wished for, and warnings I needed someone to have whispered in my ear.
I have often thought over these three years, in fact, that my downfall was precede by fear most of all. Fear that if I lay all bare, I would bring down upon me more drama, more havoc than my silence has given my life. Suddenly this timidity serves to remind me that I, like us all, am linked eternally to the Devine who in turn is linked eternally to everyone. Not sharing what I have learned deprives the collective consciousness a chance to help, warn and protect those who come after me. When I was younger I used to talk about legacy. That legacy is a living construct each of us creates in our lives by our will, our actions and our treatment of others. I would say that this living construct, this legacy, was all that we could truly leave our children. Among the rubble is shattered bits and pieces of my former legacy. I hold it in my hands as the shards poke my palm and I know that this isn’t what my son deserves to have left of my life. This isn’t what I deserve to have as a life.
Yet, I have no glue. I have no instruction. I don’t even have plans on how to change this destruction into construction. All I have is a fluttering in my breast that speaks to a healthy, happy and productive life, despite the disability of my body and fear that I am not strong enough to foster and grow that which I deserve. All I have left is hope and fear.
“Fear Not! I have been with you from the beginning and I am that which is attained at the end of desire!”
At first I worried that my affliction would lead my ex-husband to take my child. Then I worried and still do about the financial strain my continuing illness places upon my family. All the while living in a quiet shame that somehow I am not spiritually aware enough to simply overcome a genetic disorder I had successfully lived with for twenty-eight years prior to my downward spiral. Being part of a spiritual path that firmly believes, as do most spiritual paths do, that the mind coupled with the power of spirit should be capable enough to overcome the illness within has helped to heap upon me more and more shame. The fact that the majority of “friends,” I had before my illness became debilitating, shun me has only helped to reinforce the idea that I would still have these “friends” if my spiritual being was stronger than it is. It doesn’t help to know they secretly believe that I am not spiritually whole because my diseased spirit is being manifested in my body. I know they believe this, because before my own affliction, I would have thought the same thing too. Talk about reaping karma!
As my body’s weakness overcame me, the doubts of my mind regarding all that shame and guilt slowly shackled my spirit. I, who was entrenched in the study of all things spiritual, fell into despair wondering why I should bother to continue to feed a spirit that in truth was black with shame, guilt and dis-ease. No one else bothered, why should I? I was left with two good friends, my husband, son and one service animal. And they, so engulfed as was I, with the continued battle raging in my body, didn’t have the time or the energy to encourage spiritual practice. I watched as not only was I abandoned but my family turned caretakers were abandoned also. Now I was part of a family once rich in spiritual bonds whose ties now withered and dried up while the vital spiritual nourishment abandoned us as our outer support system vanished into their own healthy and happy lives.
I don’t want to sound bitter, though I am a bit; moreover, I want to investigate this phenomenon that has played out in my life. Having been asked to submit a paper for an anthology about disability and spirituality being encouraged eagerly by my sister to do so, I suddenly found within my heart layers upon layers of innate knowledge of myself, my family and current and lost friends, I was unaware had taken root. Most surprisingly was the revelation that my spirit was bound.
It wasn’t bound by another, someone casting upon me some evil spell; although to blame my condition on another would be a relief. It wasn’t even bound by the limitations of a body racked by a genetic disorder my very birth had given me. No, the usual suspects were to blame and a mirror in my bathroom revealed the perpetrator. Me. Myself. I. Dia. Marcassa Nettles. Lydia. I shackled me.
After literally YEARS of counseling others to watch out for the demon within, my own demon was set free when my body broke. Would it have been released if my family and I had experienced a greater support for our outer circle of friends? I don’t know; maybe, and that is a thought to expound upon on another day. More important at this point in my life is this: my own personal demons have been given free reign of my heart, my soul, my mind, my psyche for three years. If one were to calculate the damage in terms of monetary loss, it would be in the millions. The landscape of my mind reminds of me of a woman standing at ground zero of the tsunami that rocked Japan. Around her every surface that can be seen is nothing but a living graveyard for all the people who were not found. My soul is this decimated. At my feet buried under named and unnamed rubble is my future, my dreams, my hopes, my plans, my family, my everything.
It is almost as if the shock and awe of the physical tsunami that shook my life, took three years to process and suddenly I stand able to clearly see the ultimate damage has been done not to my body but my very essence.
The interesting result of this slow awakening is that my center being, where will resides, feels like it is warming up in the most pleasant of ways. My body today is wrecks in the aftermath of having another allergic reaction attack my immune system. It feels like a hangover has descended despite the fact that alcohol is no longer a pleasure I get to imbibe. My will, my sacred self, and my heart are all warming up despite this crippling disorder of the physical. It is as disturbing as bulldozers must be, coming in to remove the rubble after a catastrophic event. It is necessary but all that scrapping and moving seems to be further destruction, even if it is a necessary kind. And it is still painful, that rubble used to be a healthy thriving place, imperfect perhaps, but a place of my own, nonetheless. Seeing it scrubbed clean is in a way another type of death in a landscape where death has reigned for fall too long. I do not want this further pain, even if I believe it is a healing one.
As these rumbling become a tornado in my stomach reminding me that all is being swept clean so that all can be rebuilt, I am still shocky. Loses of friends that I have avoided facing are suddenly over turned dirt that oozes with the stench of death. The loss of my career is like an uncapped gas leak revealed by the rubble to rise and smell of sulfur bringing to mind thoughts of hell itself. The strain upon my mate is laid bare as the rubble is cleared and the nervous belief that I might actually die is plain to see on my son’s young face. Yet, already, the demolition has born some surprising results. I am reminded that some of my things lost to the disorder have been replaced by friends willing to pitch in a few dollars on my behalf. And I find that gift has helped restore some of the mental capabilities I lost early in the battle of my physical dis-ease.
I can write again. The words are like over turned treasures to a bird in a newly plowed field. They are easily accessed and quickly digested and placed upon a page for general consumption.
The shackles are still there. I am unclear how far I can take this turning and changing landscape. I am unsure if I can really rebuild my spirit not only thrive again but to be strong enough to face an uncertain physical future. I still struggle mightily against the demons of shame and guilt and failure and shame. I am not clear what to replace those thought patterns with or even how my beliefs dove tail into all that I have experienced.
Is this a private battle, which I write out and keep for myself? Do I dare expose myself again? After all I did once and feel as if that one tsunami washed all my friends away in its destruction. Will the same freak occurrence happen twice? If I find myself hospital for days again or at home recovering and unable to write will I continue to feel that my value as a person has dropped off and re-shackle my emergent spirit? Can I really afford to further damage a spirit that is trying to heal? Can I afford not to try?
With that last question my physical body literally trembles and the answer is clear to me. No. I can’t afford NOT to try, and, as it has been my life’s motto, I can’t afford not to share. I have never felt that the things that have devastated and shaped my life were something to be experienced and absorbed into my spirit and soul and alone. I have ever felt that I was put upon this earth and experienced the evils, ills and mistakes I have because by my sharing someone might find hope that was denied me, help that I had wished for, and warnings I needed someone to have whispered in my ear.
I have often thought over these three years, in fact, that my downfall was precede by fear most of all. Fear that if I lay all bare, I would bring down upon me more drama, more havoc than my silence has given my life. Suddenly this timidity serves to remind me that I, like us all, am linked eternally to the Devine who in turn is linked eternally to everyone. Not sharing what I have learned deprives the collective consciousness a chance to help, warn and protect those who come after me. When I was younger I used to talk about legacy. That legacy is a living construct each of us creates in our lives by our will, our actions and our treatment of others. I would say that this living construct, this legacy, was all that we could truly leave our children. Among the rubble is shattered bits and pieces of my former legacy. I hold it in my hands as the shards poke my palm and I know that this isn’t what my son deserves to have left of my life. This isn’t what I deserve to have as a life.
Yet, I have no glue. I have no instruction. I don’t even have plans on how to change this destruction into construction. All I have is a fluttering in my breast that speaks to a healthy, happy and productive life, despite the disability of my body and fear that I am not strong enough to foster and grow that which I deserve. All I have left is hope and fear.
“Fear Not! I have been with you from the beginning and I am that which is attained at the end of desire!”
The Charge of the Goddess ~ Doreen Valiente modified by Lydia Marcassa Nettles Crabtree 2007
Even as your son becomes your legacy, it is also true that anyone who was every your student is your legacy. Those of us who learned from you, grew from your and your family's teachings are your legacy. My son is a part of that; other parents' children are a part of that. There is glue in family and the legacy that family provides.
ReplyDeleteThank you very much.
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