Beauty Amidst The Rubble

 

Marybeth Sclafani

Photo Credit:  Marybeth Sclafani

My name is Aaron Michael Stolle and I have a disability.  My disability is called dystonia.  Dystonia is a neurological disorder which causes my muscles to contract and contort in abnormal (sometimes painful) ways.  I have struggled not only with it all my life but also with how people look at me and treat me because of it.  I do not want to be treated any differently than anyone else, even though I know I am different and will therefore naturally be treated differently by others.  As can be seen, my struggle with dystonia is not only physical but also social, psychological, and intellectual.  Disability, even though it is merely physical, affects the whole person because the person and their body are one.

Obviously, it would be silly to deny that I have a disability when in fact I do have one.  However, when I recognize or realize this fact, I run the risk of letting it, the disability, define me.  “I am disabled” is the constant cry I have to fight against.  This fight is not made any easier when others treat me differently or when I experience their disdain or supposed superiority.  My question becomes: how can I recognize that I have a disability without letting it define me, even partially?  The reason I cannot allow my disability to define me, even partially, is because once I allow something to define me, it begins to limit me, to limit what I can and cannot do.  It is true that some things will be more difficult for me, but does that mean that I cannot do them through hard work and perseverance?  Also, one aspect of disability of which people, who do not have a disability, are not aware is that a disability comes with certain abilities.  Having a disability requires me to be creative and to use the world around me in different, unusual, and innovative ways.  It also requires belief or rather a faith in life having meaning and purpose.  It requires me to take a different perspective on life and to search for the meaning of life even when it is buried or hidden.

As I have grown older, my search for meaning has evolved, developed, and deepened.  Viktor Frankl is particularly helpful here because of his search for meaning amid the concentration camp.  He says, “If there is meaning in life at all, then there must be meaning in suffering.”  In other words, the meaning of life implies a meaning to suffering “for a life whose meaning depends upon such a happenstance—as whether one escapes (suffering) or not —ultimately would not be worth living at all.”  “But,” one might ask, “what meaning can come from suffering?”  In answer, Frankl quotes Dostoevsky as saying, “There is only one thing I dread: not to be worthy of my sufferings.”  Frankl continues, “the way they [the martyrs] bore their suffering was a genuine inner achievement. It is this spiritual freedom—which cannot be taken away—that makes life meaningful and purposeful.”  In other words, a person’s sufferings have meaning through their response to the suffering, by the way in which they live their lives, by bravely (even joyfully) suffering even in the face of impending death or defeat.

And this is what scares me about the movie “Me Before You” and the recent push to legalize assisted suicide.  Not only do they misrepresent the intricacy of the lives and sufferings of people living with disabilities, but they also implicitly say that my life is worthless and my search for meaning is ultimately a lie and self-deception.  They say that I am not worthy of love, which is the only answer I have found to some of my sufferings.  I have enough trouble conquering the cry “I am disabled” without also being told “you don’t belong” or “it would be better if you were dead”, without being pressured to die.  Assisted suicide claims that nothing good can come from suffering, that we are somehow made undignified by the care of others.  I cannot accept this.  How can we love if we cannot care?  Is this not part of the beauty of a mother’s love for her child, that she cares for him?  If anything, both the mother’s and her child’s dignity are raised by caring, not diminished by it.  Could this same care not be the source of our growth and redemption at the end of our lives?  Think about it!  When one is facing their death, they do not want to have any regrets.  They grow exponentially fast in this relatively short time.  This time of suffering at the end can become one of meaning, purpose, joy, and love.  They grow in virtue, prayer, faith, hope, and love.  They impart wisdom to their family.  They strive to reconcile, forgive, and leave nothing unsaid because this is their last chance.  If only everyone could live each day as if it were their last chance, the world would be a much better, a more beautiful place.

Written by Aaron Stolle, 2016 batch 3 North America intern