Wednesday, July 2, 2014


In helping others, we shall help ourselves, for whatever good we give out, completes the circle and comes back to us.

I have been on my own personal soapbox regarding how we spend our donor dollars. This is an ongoing theme in this space. Some of us prefer to support research, some wish to support patients during those difficult treatment days, some choose to share of themselves by giving back to the shattered lives left behind in the tragic wake of an untimely death.  And the list goes on.....

There is nothing more tragic than the loss of a child, but for a parent and as a mom, knowing that small children are left mourning the death of a parent is terribly distressing.  Losing a mommy is devastating.

When my dad died in 2007, our family decided to set up a scholarship in his memory at a local high school. We have awarded nine scholarships in seven years. It is always poignant because awards night is always just days before Father's Day and less than a month before my dad's birthday.  It's become our gift to him.

The sole criteria for these monetary gifts is that the college bound student recipient had dealt with a parent with a serious illness at some point during their education. Despite the challenges of caregiving, of having what should be joyful and carefree memories of their high school days tainted with fear, the young people managed to graduate and embark on their next path, pursuing a college education.

In some cases, the parents of these young people survived their illnesses. In others, they succumbed. Tragically, three of our recipients lost both parents in a very short period of time.

One year, it was a dad who passed away.  Cancer.  Mom was the primary caregiver.  She ignored the persistent back pain, chalking it up to the fact that she was helping her husband as his condition weakened.  Shortly after his death, she got herself to a doctor only to learn the pain was not from the lifting and the bending.  It was a symptom.  Pancreatic cancer took her life weeks after her husband's death.

Most recently, siblings were awarded the scholarship in back to back years.  Their mom died of her cancer in her early 50's. Their dad took his own life within a short time of her death.  Some might see that as a selfish act, but I see it as the actions of someone so overcome by grief, so consumed without proper support, it just makes me very sad.  This might spark a lively debate but I am going to respectfully request we all refrain from passing judgment or making comments that are derogatory in nature.  Until or unless we have walked the shoes of another, exactly as those shoes fit on their feet, we empathize or sympathize.  Anything less than some form of understanding makes us part of the problem which does absolutely zero in any attempt to work toward solutions.

There is such an enormous stress and a psychological toll that goes along with caregiving, particularly when it's someone with a terminal illness.  It's the ultimate mind f*k, if you will.  The fact that a caregiver could no longer watch this unfold, that it was so distressing he took his own life speaks to the fact that we MUST do better for the caregivers.

Quite simply, this is tragic and the only place to point a finger is at the impossible hoops we must jump through to access mental health care which has become another very important personal issue. Thankfully, caregivers are being placed front and center because their needs must be addressed.  This is just one family's story and one act of desperation in reaction to what were viewed as (and rightfully so) hopeless circumstances by someone who was in a helpless situation.  I'm sure there are others.  This need not happen.  Yes, We Must Do Better.

And on that note, I want to commend the family and friends of Atalie Bernic.  I met Atalie when she was still a teenager.  The best friend of a cousin through marriage who has since become one of my most cherished friends, I recall the first time I met her.  She bounced in to say goodbye.  She was spending an extended period of time that summer in Croatia.  This was in the early 1990's.  My brain limits me from recalling things in the here and now, but my old memories are vivid.  This scene is vivid as was my reaction to her announcement.  "Croatia," I queried in a somewhat incredulous tone.  Yugoslavia was in the midst of a bloody war.  I can see her face, her brilliant smile and her nonchalance.  "It's fine, all of that stuff is not near where my family lives."

Fast forward almost two decades.  I had been with Atalie on a number of different occasions.  Always that same brilliant smile, the quick wit and a presence that filled any room into which she walked.  It was my friend, "I hate to ask you this......"  and I knew.  It was after my cancer diagnosis and treatment.  "Would you mind talking with one of my friends?"  I believe my response was, "Someone just found out they have breast cancer, Who?"  It was Atalie.

We met for dinner within a short period of time.  Again, vivid memories that I may have alluded to in prior posts.  Her very first words when we saw each other:  "What does this mean?  Am I supposed to be wearing pink?  Do I need to run in these races?  Should I be putting on a baseball cap with a pink ribbon or something?"  She was joking but in joking, she told the whole story in 30 seconds or less.  THAT is the popular view of breast cancer patients from the outside.  And then, reality strikes and it's no longer all of that trite silliness.

Atalie was fine and then, she wasn't.  She was diagnosed with triple negative disease, went through the entire treatment protocol, got clear scans after the active portion of the treatment program.  And then, metastasis.

Initially diagnosed in the mid part of 2010 with non-metastatic disease, the metastasis showed up on scans one year later and in eight months, she was gone.  In a post I wrote the day after Atalie died, I expressed my ire with a lifetime of failures.  That post was written well over two years ago.  In 2 1/2 years what have we seen?  More of the same.  Incremental and very modest gains.  Some are responding beautifully to the new treatments but some is not good enough.  It should be most-not just what we call the outliers.

Atalie's mom has worked tirelessly to set up Atalie's Hope, a not for profit foundation.  She has the ongoing support and assistance of so many of those who love Atalie.  Last week, I attended the 2nd Annual Gala.  The foundation has been set up to help the families left behind.  Most especially, the children whose mommy's are no longer walking among us.

The evening was perfect.  There were plenty of moments when one of us was walking around blinking back tears or swallowing a lump in our throat, but it was perfect.  Atalie would have loved it.  And Atalie should have been here for it.  In her place, were all of those whose lives she touched in such profound ways.

Community outreach.  This is what it looks like and this is the way you bypass the pink and give back to honor those you love. Keep it close to home and keep it close to your heart.  It's a way of celebrating the lives of those we've lost, of keeping their memories alive.  For me, it was a way of saying Happy Birthday, too.

On June 30th, Atalie would have turned 42 years old.  Tomorrow, my dad would have turned 78.  Both gone, each never forgotten and in the aftermath, those of us left behind, trying to make a difference for others.

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1 comment:

  1. dear Annemarie,

    this post was so powerful as you spoke of the recipients of the scholarship established in memory of your dear Dad. to know that some lost both parents is heart wrenching, and the urgent issue about needing to provide more effective support to CG's is yet another for which you advocate so passionately. and Atalie's Hope foundation - another example of such caring and compassion. I loved that quote the preceded this post. thank you for all you do for all of us; I hope that you will experience the goodness and kindness and generosity of your big and beautiful heart many thousand-folds over.

    much love to you, my Friend,

    Karen XXXOOOO


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