Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Tuesday, January 18, 2011

The Inferno Redux...three new circles

              The inferno is a place of fire, a place of suffering on earth.  Suffering is not bad, certainly suffering is not simply is what it is in the moment.  People can stoically embrace suffering, reject and deny it, find a deeply religious significance in it, pray that it passes suddenly or conclude that it is a meaningless construct to divert our attention from what is real and what is possible.
       I blog a bit and follow numerous fellow cyberspace friends'
blogs, I lurk on chat groups for parents of the disabled and comment when useful, I read much online.  Despite our levity, our moments of being morose, our sense of compassion and unity, we all suffer in a way distinct from the common person, the "normal" ones.
       What I have learned or what my reality has created, is the belief that there are three circles of suffering in a place between heaven and hell, a limbo of sorts.  I call it a limbo because both the children with disability and their parents exist in a place between the vision of joy and the view of dread...a place between living and dying.
       To me, there appear to be three layers in this inferno (perhaps more), types of human conditions in which parents and children of the disabled reside.
       First, and perhaps the  optimum circle, includes parents with severely disabled children who have the resources to thrive.  Often they blog, they exude hope, they see humor in a humorless world.  Often they are able to care for their children at home with some assistance and above all, they are able to mobilize the resources to explore all the alternative therapies which benefit the children.  In most cases, their family unit is stable, although they also suffer from the disappearing friends and family syndrome.  They reside in the circle closest to Paradiso.
       Second, distant from the former circle, exist a group of parents of severely disabled children who can't maintain the level of sanity provided by blogging.  They survive in the chat groups and support groups for parents of disabled children.  They have few resources, many times without a significant other (usually because the Man can't cope), and cannot speak strongly enough to navigate the support systems.  They are allotted few hours of respite or assistance, beg on the support groups for an extra mic key set or trach setup, are denied school and health services without the ability or knowledge to appeal.  They have no access to alternative therapies and constantly plead for even the most minuscule of resources.  They live on the verge, give more than their all, and relentlessly love their children.  They exist in the belly of limbo.
         Third, and farthest removed from Paradiso and teetering on the edge of Inferno, are parents of disabled kids who simply could not do it.   You find them neither blogging nor on chat groups.  They cannot even support themselves let alone their children.  They have nothing: no resources, no energy, battered by life, little education and do not survive.  They place their children in institutions, in pediatric nursing homes or other care facilities.  The energy to visit their children diminishes over time, they are devoid of the lust for life.  Children in these situations fail to survive. "Abandon all hope, ye who enter here."
         My hearts bleeds for this group, my heart bleeds for the second circle.  It is only the first circle that the universe has provided what is needed.  I often wonder why society and humanity cannot look at those who have been totally beaten down by life and why humanity cannot provide an equal opportunity to parents and kids at each level of suffering.  We bailout banks and insurance companies, subsidize energy conglomerates and pay unconscionable salaries to government bureaucrats, yet deny (as in Massachusetts) dental care for severely disabled adults.
         I am thankful that I live in the first circle, I love to philosophize about the nature of disability, alternative treatments, provide verbal support to fellow parents of disabled kids.  There is a bigger issue, perhaps as the existentialist, Albert Camus, stated : "I refuse to live in a world where little children suffer and die each day."  That's my problem; I have no solution.


  1. Another excellent pt, I love how you always manage to hit the nail on the head..

  2. The worst sensation is to feel stuck in a bad place with no options. Even worse, I have seen people tumble from the optimum circle due to caregiver burnout. I have also seen people who finally caught a break climb to optimum circle (as easy and lucky as finding a nurse or social worker who got them plugged in). Often enough, there are resources out there but our lack of knowledge, time and accessability stand in the way. Chatting and bloggin (especially this blog and its guru) are great opportunities to share, learn, and support each other.

  3. I think the disappearing friends and family syndrome is so true. I heard all the time when I grew up, that Blood was thicker than water, but I think the water I've been looking at is obviously at 4oC as my "water" has been thicker than my blood!

    I sending one of my Super hugs to Rruel.

    I agree Rruel, this blog's Guru is a first class person through and through, and Phil, Sharon and Adam, it's an honor and privilege to know you, you're my "water".

  4. 1. There are always choices. Some individuals simply do not explore the darker options (this goes both taking care fo and in not taking care of)
    2. Most extremely physically and mentally compromised children, who are also chronically ill are cared for in institutions, respites, hospitals...but not out of being in circle two..out of choice (see point 1).
    3. I like the idea of the circles; I think you may be on to something for the future of categorizing the situations parents find themselves in with severe and extremely compromised children, a necessary step, I feel to getting recognition on a government level.
    My added thought is that this model can be expanded to acknowledge that there is overlap of layers and if you feel like taking this further, the question of how the degree of disability would work within the level vis a vis social conditions since at each level there would be each degree of disability.
    I'd be interested to see statistics ( I doubt they even exist) as to socio-economic status and how it correlates to the decision to keep children at home.

  5. Wow, powerful blog! Not sure where me or my children fall; I think we circle hop :)


Related Posts Plugin for WordPress, Blogger...