Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Wednesday, March 7, 2012

Catastrophic Thinking.....Welcome to Disability-land!

       July 24, 1998, Adam almost died...maybe he did and then he came back into his body, maybe his spirit never really left his body, maybe it hovered above and was waiting to decide about life or death.  Twenty five minutes under water and when they finally pulled him out no pulse, no respiration, no heart beat, blue color, low body temp, but a serene mask of death I was told.  Of course, the camp never called me.  Of course, a trauma center social worker called and said my son was there,  two hours after the incident.  Of course, I told her he could not have been in a swimming accident because he was hiking at a premiere camp.  She said, "don't come alone!"
      Well, that was thirteen and a half years ago and the words and memories are etched in every cell of my body.  Adam is OK.  OK does not mean verbal; OK does not mean he can move his arms or legs with intention.  OK does not mean he has a straight spine, a body free from multiple contractures.  OK does not mean he can chew or control any of his bodily functions.  OK does not mean that his basal ganglia magically healed. He's OK...most of the time.  He can smile and he is is happy, most of the time; above all, he lives.  The "really happy" part is something which I cannot attribute to many people I know.  The tragedy is not that this "thing" happened; the tragedy is that most people could give a rat's ass about him and how he's doing.

       How are mom and dad doing?  Well, most people don't give a rat's ass either.  We're OK, except for a phenomenon called catastrophic thinking coupled with undifferentiated anxiety!  

       Catastrophic thinking can be defined as ruminating about irrational worst-case outcomes. Needless to say, it can increase anxiety and prevent people from taking action in a situation where action is required. This can be especially true in a crisis situation. 

       Need some real life examples?  Adam hasn't peed in 12 hours, hence do we need to take him to the hospital because his urethra needs a roto-router job or his bladder will explode?  Adam misses a bowel movement, does he need to go to the hospital because it must be a bowel obstruction due to a collapsing pelvic structure?  Adam is hyperventilating, so does he need a hospital stay because he must have aspirated some pureed food....damn, we removed the g-tube after three years of feeding him high fructose corn syrup.  Adam can't sit in the wheelchair for more than two hours, let's get  a consult because his hip must be subluxed.  Adam has a temp, is it a lethal form of pneumonia?  Irregular breathing, must be a death rattle?  Falling asleep during waking hours, must be over medication?  Ten thousand scenarios, ten thousand occurrences of catastrophic thinking, ten thousand imaginary trips to ICU'S, ten thousand deaths.
       People think that you can cure away, therapy away, medicate away catastrophic thinking and the resultant pervasive anxiety...not in this lifetime.  Every deviation from that which is routine, from that which is normal, causes undifferentiated anxiety and catastrophic thinking.  Not that you haven't dealt with stuff, but simply because there are wounds that never heal...they do not heal ever, the kind of the chronic sorrow stuff that textbooks are written about.

       You live on the threshold of death every fucking day.  Not that's it imminent, not that you are afraid of it for yourself, but that you cannot bear the thought that your kid will be alone if it happens, either to you or to him.  I cannot bear the thought that he would be he was when he nearly died almost 14 years ago.  The root of catastrophic thinking...he would be alone and that I were alive, he would be alone somewhere in energetic outer space.  It's hard to deal with that shit!

    Could some of these thoughts be true? Many anxiety-sufferers will say, "Yes!" However, what is the likelihood that they are true? The anxiety that is caused by catastrophic thinking far outweighs the actual consequences that will be experienced .

    The fight-or-flight response (also called the fight-or-flight-or-freeze responsehyperarousal, or the acute stress response) was first described by Walter Bradford Cannon.  His theory states that animals (and we are part of that evolutionary group) react to threats with a general discharge of the sympathetic nervous systempriming the animal for fighting or fleeing. This response was later recognized as the first stage of a general adaptation syndrome that regulates stress responses among vertebrates and other organisms.

    An evolutionary psychology explanation is that increased anxiety serves the purpose of increased vigilance regarding potential threats in the environment as well as increased tendency to take proactive actions regarding such possible threats. This may cause false positive reactions but an individual suffering from anxiety may also avoid real threats. 
   The psychologist David H. Barlow of Boston University conducted a study that showed three common characteristics of people suffering from chronic anxiety, which he characterized as "a generalized biological vulnerability," "a generalized psychological vulnerability," and "a specific psychological vulnerability."  

        This is actually psycho-bable for catastrophic thinking.  I would imagine these demons lurk in the souls of every parent of a severely compromised child.  There ain't no healing, there ain't no dealing, there ain't no option to flee or to fight.  It's just there and will be forever.

     You live for today, you believe that you will see tomorrow.  You give all to today because you fear, in your deep, dark place, that there may be no tomorrow.  Being alone frankly shits....but I would not trade my life nor my experience for any one's.

PS. Thanks wiki, for the few lines I borrowed, which are obvious to the reader.


  1. I feel as if a light just went on in my brain. Thank you.

  2. Catastrophic. People like to give terms, name names, in order to categorize and belittle. On one end you have the 'haters' who will call you 'hysterical' but on the other end you have real world experience.
    The number of times that I've held my son in my arms watching as death peeked over my shoulder because of central apnea and together we waited to see if my son would come back or not, or the number of times I have stood hovering over him, in hospital or not to see if his breathing will improve, his status epilepticus finally relent to the dangerous levels of medications, are legion.
    His medical fragility that, combined with education, curiosity and a medical profession and unending belief in his right to procure a spot on this earth have all worked to synthesize a modicum of success because of the preventative measures initiated due to "catastrophic" thinking.

    The only thing catastrophic here is indeed the "move along folks, nothing to see here" in the denouement of living under tragic circumstances such as you do with Adam. This of course is to say that you, his parents, live in stark contrast to tragedy, giving life to your son, physically and spiritually.
    The road is long, with many more rivers to cross but the destination is the same for all of us. Therefore what is of the most utmost importance is whom we choose as our traveling companions. I'll see you at the bend.

  3. Fantastic post! And great response Eric too. I was actually thinking about this very same thing today. Ryley is sick with a cold. Nothing too terrible I don't *think*. But then the problem is I overthink. What if he ends up in hospital again with pneumonia. What if he has another weird seizure and I administer the midaz and he stops breathing. What if, what if, what if.
    I sometimes send myself crazy thinking about the potential catastrophic events that could come from one tiny thing.
    Is this really normal?
    Is this truly a part of being the parent of a child with a disability and complex medical issues?
    Or maybe it is just because I am an anxious person anyway and I rationalise my irrational thoughts by blaming my neuroses!!
    All I know is, that I am hyper aware of subtle changes in Ryley because I am constantly trying to prevent illness and ensure he is enjoying life as much as he can.
    I'll catch up with you both at the bend too!

  4. I too feel helpless when Noah is sick. With every gunky sounding breath I find myself trying to help him breath better in my mind. Only to find my chest hurting trying and I've haven't helped him at all. Why is life with a special needs child so lonely? I've often asked that same question myslef.

  5. Love has no boundaries, and the strength has no limits... incredible.. inspiring. Thank you for sharing and providing hope.

  6. Phil, the words you wrote resonated to my core. I think about these things everyday. I feel scared every time I let my mind wander. I use every part of my strength to remind myself that I'm doing a good job. Then I wallow in despair and have to pick myself up again. Do I share this with anyone - rarely. There's been those odd occasions when I've felt that a person may understand or care. They're fleeting and generally I'm incorrect. So I battle on with great determination and total disinterest in others. I gain nothing from others. They frustrate me and make me feel different. So I'd rather not have them around. I'm the only one who worries about each and every day. No one else really thinks about it. I'm constantly thinking about it. It would be so nice to have one day off from thinking. Then I discover that you and Eric and others are going through this process as well. Now I'm paying attention. Finally, people who get it. People who's brains and bodies that are on constant alert. It's invigorating. It's so therapeutic. I don't feel like such a loner. I feel like I can talk and you'll really listen. I feel great strength from the bond we share. Everything you say makes so much sense I could jump for joy - keep talking!
    How do we do what we do and keep our sanity, our humor, our optimism. It certainly wanes at 4am when things are diabolical. Then, somehow, we spring back - no thanks to anyone else and continue to do what we do best. I actually feel quite privileged to be who I am. Not just anyone could do what we do. It's a very unique and select undertaking. I think we do it damn well. So I don't really care if the rest of the world doesn't care - but I'm really glad that you guys care.

  7. this is an amazing post. thank you for writing it. it is real, it educates, and it rings of complete truth. my situation does not resemble yours, but i do care for a child with cognitive disabilities and a very serious seizure disorder (the later of which troubles me most). so to a certain extent i "get it" but do not live it nearly to the extent you do. you are a wonderful writer!

  8. Thanks Phil, Eric, mhk and all the people who responded here. It really is nice to know there are some people who "get it", who know there is always something else on our minds no matter what we're doing or how hard we're laughing or whatever it we're doing. A "what if" always lurks out there. This has left me in tears but I'm OK...

  9. All, thanks for your comments and for momentarily joining me in this parallel universe. Your comments really clarified to me that we are not alone in our feeling, our fears and our eventual being OK with our lives. I am constantly amazed at the commonality of our experience with our kids/adult kids. It makes me happy and proud to be a member of a survivors and "thrivers" club...too bad that we are scattered around all the corners of the planet. Well, then around the bend.....

  10. Phil,
    You have a way of illuminating the realms not usually spoken in human life
    You have done it before...and have done it again.
    What is it that prevents us from speaking about these shadows, anguished , agonizing & relentless places in our human experience?
    what binds us in such a way that we by and large collectively refuse to speak of these things...and you
    with the audacity of crazy-wisdom shout it out loud
    and I thank you
    My wish is that in your telling
    we get permission to speak the truth
    and you
    get more companions meeting you at the bend

  11. Thanks, Terri, your insights are always validating and appreciated!

  12. Wonderful post Phil, I cannot imagine what your family have gone through.

  13. Thank you for the kind words and thoughts, Vivian! Warmest greetings....

  14. Interesting Post. I have a son that has survived a brain injury at age 2. One of the things I mourned most was the loss of innocence. I learned quite suddenly that horrible things can and will happen to me, to my family, to anyone. My responses to situations changed similarly to the way you explain in your post. I cried many times because my life, my son's life, my families life would never be the same, we would never again live without fear. It wasn't like a home that could be rebuilt, or a money that could be re-earned. This was a hurt so deep it caused physical pain and a situation that could not ever be trusted to be stable. The fear of catastrophe not only for my son but for my whole family. I refused to get a summer home on a lake because I knew a grandchild could be careless and drown. I have great joy in my son's survival but the scars are very deep.

  15. Thank you for sharing your story, TeaGrandma. I remain continually amazed that there is a universality of experience among those of us who have experienced a life altering event, especially when those events involve our children...we are never the same, always wounded and vigilant, yet quite resilient. There is a common experience of chronic sorrow. I understand you words at my core and send my warmest regards...

  16. Phil and excellent post! You and Sharon are AMAZING people and brilliant parents. We love you guys, xox Mel

  17. Thanks, Mel! I can always look to a boost for my day with my morning coffee and a blog commment from you. I hope all is well with everyone, give Oatie a big hug from all of us. We're on our way to the big city April 4-7...will let you know how it went.


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