This thing in your brain

It was there waiting in 1949 when you were just
a little baby born to parents who should never have
married. Twice!

It was there when you learned to walk and talk.
It was there when you lost your first tooth, learned to read and figured out you
were pretty good at math and spelling.
It was there when your mother took you away from your father late one night,
and still there when you looked out the window at the prairie passing by as a train took you back
to Minneapolis.
Leaving your friends and father back in Missouri.

It was there when you got kicked out of Catholic school, when you played hockey and got into
that bad bicycle crash.
It was there when your Dad took you to live with him again and you ripped your arm open on the
metal fencing while trying to sneak into a college football game.
Northwestern was playing!

It was there when you got a small Honda motorbike, when you smoked your first cigarette, when
you played pool and when you got the nickname “Bucks.”
It was there when you moved out on your own at age 17.
It was there when you had sex for the first time, smoked pot and protested the Vietnam War.

It was there when you dropped acid, traveled around Europe, made art with Robert
Rauschenberg and got thrown into a Mexican jail.
It was there when you silkscreened McGovern t-shirts and painted signs for head shops around

It was there when you joined the YMCA to swim and shower because you had no hot water in
the loft you lived in.
It was there when you met a lifeguard at the Y who would later become your wife.
But first you took her out or actually she took you out because you had no money.
You both got a little drunk, and she learned your last name was McCool

It was there when she decided you were actually a pretty handsome guy.
It was there when you married that lifeguard, both of you blissfully ignorant to the fact that in 25
years or so it would finally begin its slow and steady march toward your frontal lobe.
It would take no prisoners. It would leave a family broken, confused, angry and penniless.
It would take away your dignity, your freedom, your memories and your emotions.
It has always been there, waiting for just the right time
to ruin lives.

This thing in your brain has a name.
It is called Frontotemporal Dementia,
and it’s a mean son of a bitch!

barry brain

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12 comments on “This thing in your brain
  1. Marlys Nitchals says:

    This speaks to me. My mind filled in the specifics with events from my husbands life as I read. Somehow I felt that at least someone else in the world understands. My husband recently entered a nursing home because his FTD has affected his motor neuron ability and a lift is needed to transfer from wheelchair to bed. I cared for him for several years at home but this change had to be made, the time had come..
    I hope you feel some comfort in knowing that you comfort others with your writing

  2. Dedra says:

    Wow, just wow. I feel quite certain you have spoken to so many who are in a similar position. Thank you for your honesty, compassion, and willingness to share your inner most thoughts. I can’t imagine how freeing and scary it is to put your words to pen. Bless you and your family.

  3. Jody Bohrer says:

    Wow! I love your poem, Nancy. It’s very powerful and also a great tribute to Barry and the life you have shared.

  4. Beth-Ann says:

    It was there and could not be loved away which is the greatest tragedy of all!

  5. Karolyn Lee says:

    So powerfully written… Your heart and soul put so strongly in this extremely well written bio. Thank you.

  6. Bonnie Jean Flom says:

    Thanks, Nancy. Your candor is inspiring – and I hope it’s healing for you. Sending love and hugs.

  7. Gwen Imes Hauser says:

    It is good that you tell Barry’s story. I remember him from Washburn. He hung out with the attractive and athletic group. He was on his own at 17? I can’t imagine what that was like for him.

    The reunion committee, for the 1987 Washburn gathering, met at Mc Cool & Company to put a really wonderful update Book together. Good god, Barry was still so handsome and on top of that…successful. I was a graphic artist, so I really appreciated Barry’s business. My friend Laurie worked for him.

    My husband is moving into PD D., so your words and stories are very helpful to me. Thank you.

  8. rachel milsten says:

    So very honest, so raw, so beautiful…so you and Barry…so sorry am I that this happened to the two of you.

  9. claudine coughlin says:

    Wow Nancy, This is quite a story and well written. I wish that this had not happened to such a special talented person like YOU! Love you lots and thanks for posting this. I hope that putting your words down will help some healing take place! Love, Claudine

  10. Lynne says:

    I envy your Barry’s years of rebellion and living life with the throttle wide open. I am sorry to read that it was FTD that waited all those years, ready to open death and destructions door. I hope that at some point in time, a fragments of peace, acceptance and even gratitude with be found hiding where you least expect them. Grief, pain, sadness will always be some part of you but how kind you are to share your story and to help other people feel that they are not alone in the world of grief.

  11. Lynne says:

    Your art and stories have given me such joy. They will always enchant me and remind me of the child who still lives within me.

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