The Visible Voice
written by Alessandra Fabrello
"The obvious is that which is never seen until someone expresses it simply." — Khalil Gibran
I first read this quote many years ago as a young girl and recently stumbled upon it again. I was taken aback by how vastly different my immediate thought response was this time.
What I had originally viewed to be a rather insightful, profound, and thought-provoking quote I now, years later, believe it to fall short and one that fails to take into account the reality of my life — a life as a mother to a severely medically fragile and complex child with profound disabilities. For in truth, when I “express it simply” the obvious that was never seen remains to be unseen. Despite persistent efforts, it has been my experience that such endeavors are seemingly futile, and I remain unheard and invisible to a world in which my existence is unknown. In my reality to “express it simply” does little in changing “that which is never seen”.
One illustration, out of an exhaustive number and of various contexts through the years, is that of a two-hour virtual multidisciplinary team meeting I had to attend to discuss and determine the fate of requested services for my son which had been denied.
I had spent months preparing my explanation and justification in support of my request, all of which was accompanied by overwhelmingly detailed and substantiating evidence submitted by my son’s team of complex care physicians and professional providers.
The denial had been a devastating blow. However, the grounds for the denial, although equally devastating, had been a blow of a different nature and unearthed an astonishing realization.
During the meeting I had been told that the administrative panel reviewing the services I’d requested were struggling to understand why I needed the support and assistance such services provided, and I was asked “What is it that you do all day that requires and justifies a need for these services?” In that moment, I had been stupefied into complete silence and rendered unable to reply other than to say, “I don’t understand the question.” I was convinced that I must have misunderstood. But, I had not.
I was of the naive understanding that the obvious could be simply expressed — there is no reprieve from keeping my son alive.
How was it possible they did not know what I did all day? Surely, they would know what it takes to provide the level of care required for a 24-hour total care severely medically complex and fragile child with profound disabilities? Given their experience, professional expertise and, by virtue of the positions they held, they would have insight, intellectual and emotional aptitude, and an expertly trained understanding of what I did all day? Apparently not.
I was left feeling unexpectedly traumatized, fearful to move, afraid to act and lost, adrift and disorientated. I had experienced an act of dismissal and insignificance.
To retreat into my world, a parallel unknown and unseen reality, is not an option. My son’s life is dependent entirely upon my ability to function and survive. But how is it possible to successfully convey and articulate my needs in a manner that yields a receptive and complete understanding? For there to be a recognition, cognizance, and acknowledgment of the necessity for support and assistance? For my voice to translate a reality that evidently unless lived can and could never be delivered and captured by expressing it simply? For me to humanize a process that operates on dehumanizing procedures? For me to adequately communicate what is both inexplicable and unknown? For me to simply express the obvious that which is never seen is not possible, or is it?
I am unheard because I’m invisible.
My voice is silent because it is silenced. A life devoted to that of another renders an inevitable disappearance into obscurity and even complete nonexistence and a life lived unseen. By virtue of my invisibility, I am unheard. My voice, my individuality and my identity, is lost. I become the vessel through which the life of another can exist. This distortion is not only created by the logistical circumstance of the life of extraordinary caregiving but is imposed and reinforced by social and systemic constructs which perpetuate a flawed perception and definition of ‘caregiver’ and ‘caregiving’ and thus, a flawed reality.
This realization has long led to my constant search for an answer, a solution, to remedy and certainly change this entrenched existence. Simply put, my persistent search is deeply rooted in my need for survival upon which my son’s life depends.
Through my lived experience I’ve discovered that for my voice to be heard it must first be received. And, for my voice to be received I must first be seen. But, for me to be seen my voice must first paint what the eyes cannot see, what the body has not endured and what the heart has not felt. There’s no secret to this most difficult of tasks.
My voice, by necessity, must express that which would be had I to extend an invitation to enter the sacred and private place I live with my son, and become a host for my guests — where authenticity meets strength, truth meets resilience and vulnerability meets courage.
I find that my voice spoken with an intelligible understanding of ‘the concept of the other’ is paramount for establishing an unwavering and unified bond — having the ability for ‘the concept of the other’, which is a profound ability for what goes far beyond empathy, is evidence that my voice is the solution and not the obstacle nor dilemma. The ability to implement ‘the concept of the other’ is having the capacity to envisage, conceptualize, define and perceive life and the world through the eyes of another that is not my own. My voice spoken from a place of serenity, with powerful solidity, strength, grace, and a depth of profound calm, and knowledge is a voice that is received, and captivating and inspiring — to ignite inspiration in another forges a bond that can have no limit to achievement and success.
When I play my voice as the most beautiful instrument of all that it is, I continue to be surprised at how strategically powerful and eloquently triumphant my voice can be, even in the silence.
This is a mother in the unexpected life of extraordinary caregiving.
As a mom to a child with complex needs, Alessandra Fabrello understands the challenges of an unexpected life. She draws on her unique background – from international relations and conflict resolution – and empowers special needs moms to reclaim their power beyond survival and take back control. HOW to own their YES in a sea of NO’s! As a strategist and speaker, she helps them redesign their lives and re-write their narrative. Where BOTH motherhood and caregiving can thrive with dynamic balance and a redefined joy.
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