Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Sunday, February 27, 2011

Healing Is In The Eye of the Beholder

     Given my well illustrated feeling to the left, I am on vacation from winter, life and blogging for a few days.  My wife of 29 or 30 years, depending on how you count, Sharon provided me with a piece of her recent writing which is a great stand-in for some of my usual and unorthodox posts.  It's her reflection on a recent support group meeting she attended, probably the first and last of this nature. Since I have patiently listened to the story repeatedly for the past week, it's your turn.  Blessings!!

     We all stood outside in the cold waiting for the library doors to open.  None of us knew each other so we were not speaking.  I was here because  sometimes  I venture forth to find a support network for myself and my family.   I looked around at the others standing huddled close, fantasizing about the possible scenarios they had all left that morning in their own homes. 

     Something was awry.  I was noticing the walking canes, the slurred speech, the crooked gait – all fairly typical of folks who have experienced some form of brain injury – the walking wounded.  The support group had been advertised as a group for caregivers of brain-injury survivors.  I don’t know what caregivers are supposed to look like but I was feeling out of place.  I had left my non-verbal, wheel-chair bound son home, safe and sound with his father.  I came to this group to replenish myself, to make a community connection, perhaps to make a new friend. 

    I had my book, CERAMIC TO CLAY in hand.  What better place to share my writing than with other folks who were living my life with their loved ones? 

    We moved slowly into the meeting room, grateful to be out of the cold.  There were about a dozen of us, each taking a seat around a huge table.  I kept sneaking surreptitious glances at the others in the room.  Within a short time it became obvious to me that I was one of the few in the room who had not suffered a brain injury.  I live with brain injury but I do not live brain-injured.  All of the folks in the room arrived to the group on their own, except for one man whose parents accompanied him.  This meant that they were all driving, despite their wounds.  To me, the mother of a severely brain-injured son, the people in this room were in a very different category – walking, talking, driving, working, advocating and seeking support for themselves.  I sat there wondering if they were the lucky ones, brain-injured and independent.

    The group facilitator made some  introductions and briefly told his story as a brain injury survivor from a car accident.  One story followed another – stroke, aneurysm, more car accidents, motorcycle collision, horsebackriding fall, seizure.  One mother spoke – her son was placed in a neuro rehab center a few hours away – he had contracted encephalitis about ten years ago and now suffered short term memory loss.  He lived on a locked ward though she felt blessed that he could think, read, write, and speak.  He just couldn’t remember where he was so she felt that he needed to be locked away for safety reasons.  I listened to this story with a huge lump in my throat – judgment was seeping through my thoughts  but I kept quiet.  Emprisonment or rehabilitation?   

    At one point I did ask about the group membership and I was told that it was not uncommon for groups like this to begin with a mix of caregivers and survivors.  We would see how the group worked and divide if necessary. 

     I tried to be open to this experience.  I certainly felt compassion for the people in the room.  They each waged a continuing battle with the devastating impact of brain injury. I knew that, no matter the severity of the injury, the journey was intense.   I watched as the group members bonded over their experiences, smiling, nodding, and crying with one another.  I tried to participate and when it was my turn to speak I told my son’s story, my family’s story.   Though people listened politely I never felt nor heard any connection.  They were walking and talking!  They also knew nothing about  alternative approaches to brain injury so I felt like I was speaking a foreign language.  A few had a relatively new brain injury whilst others had lived for many years with their fallout.  Some of their stories involved this theme: brain injury leads to depression leads to substance abuse.  Their stories were filled with pain, frustration, chaos, impotence,sadness and fear.  I kept wondering what was missing in their rehabilitation or in their community.

    I soon realized that I would not have my needs met in this setting.  In the years following my son’s accident I had many experiences with groups of parents and their brain-injured children.  We would tell our stories, describe our challenges and those of our children, share strategies and therapies and always walk away feeling comforted and validated.  The world of blogging and internet support groups also fulfills that need.  The people in this group were struggling and perhaps some of their pain would be eased by sitting with others who shared the same reality.   It was a strange experience for me, enlightening to some degree but not one I needed to repeat.  I left with no regret and returned to my home and my son with the belief that he was in the best place possible and he, in many ways, had a better quality of life.  Though my son is non-verbal it would be absurd to not acknowledge that he has a multi-layered emotional life.  We have done many things over the years to help him work through the trauma of his accident.  He may have moments and days of frustration but generally he is one happy and peaceful young man.   He is not alone!! 

P.S. I will return....


  1. Sharon, I share your thoughts on your support group experience! Phil, I share you thoughts on winter too (however, I am female)! I am on the same vacation too:)!!!

  2. Dear Sharon, sorry to hear about your support group experience. I know that we can't see each other day to day, but It's an honour and a privilege to have your family's friendship, which we value immensely.

    Phil, I'm with you on Winter, if only I had some nuts... (Oatie hasn't tried nuts yet), ok I'm mixing UK and NA humour here... lol! (Just got back from a Scout meeting with endless supplies of Caffeine and chocolate cupcakes). At least it was only -13 and not -31 like the other day, but the snow was falling...



  3. Interesting that a group advertised for caregivers was more a support group for survivors. Of course, there could be overlap--some caregivers are also disabled--but it doesn't sound like that was the case.

    Support groups are always such a hit-or-miss proposition. Sometimes, people can come together in amazing ways, and at other times, the energy in the room doesn't work. And of course, what works for one may not work for another.

    But I'm glad you went, because it sounds like you got a perspective that you needed, even if it wasn't what you'd expected to come away with.

  4. you guys make me laugh. i love your humor & wit, your back & forth playful spirits, & the way you both can write! i am so thankful i had the opportunity to know your family. i am your not-so-secret-admirer...

  5. Your dedications as parent inspired me a lot,shall visit again.

  6. I really liked your conclusion and I agree: Adam is in the best place possible and has a better quality of life than many as he is deeply loved and cherished by two wonderful parents.

    How odd to have brain injury survivors at a caregiver support group meeting!

  7. Thank you for sharing your story on the Internet. Some people seem to be blessed with the gift of happiness and your family really seems blessed.

  8. Sorry the support group wasn't what you had is full of misexpectation...but I believe there are still gifts to be found sifting in the sand...perhaps you gave this group a gift of your presence

  9. Sharon,
    Thank you for your prospective as from reading your post and reading your husband's post over at Rachel's blog, I have to agree that your son is the lucky one. Almost eighteen years ago, I worked as a nurse admission liaison for a short term rehab hospital that included a neuropsych unit, in addition to a traditional brain injury unit and general rehab. I saw many patients like those your describe. They are the walking wounded and unfortunately I think society and their families have abandoned them. Still, it does not sound like that is the place for you to be and I am glad you recognize this.


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