This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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The Lights of May

April 27, 2018

Special note: In honor of Mother’s Day 2018, we’re recycling this post that was originally published in 2012. This inspirational post is as relevant as when first written 6 years ago. 

by Sue Friedman

We were late.  The last hint of twilight faded and although we were close to home, I was nervous.  It was already 9:30, way past Beau’s bedtime, and instead of being snug in bed we were still two blocks from home. By that time I was almost running, hurrying my son when he stopped.

“Mommy, what was that?”  he pointed to a neighbor’s yard.
“C’mon Beau, we’re late,” I pleaded but he wouldn’t budge.
“No, Mommy, what is that?” he insisted, “It’s green!”

At 5 years old, Beau was in the habit of pointing out every pebble, plant, and piece of litter and dirt along the way. A walk around the block with him could turn into an hourlong adventure.  But tonight we had already walked a couple of miles to the store and back; I was tired and still had work to do. Our sleepy Florida neighborhood was generally safe, but it was still a source of anxiety for me after dark.

I was anxious a lot. And certainly I wasn’t as patient as I used to be. Putting off parenting as I pursued my veterinary career, I was 31 when Beau was born. But it seemed I had waited too long to have the family I had dreamed of when I was diagnosed two years later with breast cancer. Before my diagnosis, I was at the peak of my veterinary career.  My health had never been better, and I no reason to think my life would be forever changed by a cancer diagnosis. I had no advance warning that I had inherited a BRCA mutation and was at such high risk. My diagnosis was followed by two years of dealing with my cancer, initially with surgeries, then—when my cancer recurred—more treatment that included chemotherapy, and radiation. On May 15, 1998, after learning of my BRCA 2 mutation, I underwent a risk-reducing oophorectomy and hysterectomy at 35, abruptly ending my plan to have more children. A prophylactic mastectomy and reconstruction on my other breast followed. During treatment for the recurrence, my family relocated to Houston. All I could think about there was the time when I would finally be done and could reclaim my previous life and career.

Yet when I finished treatment and returned home, fear of another recurrence was my constant companion. It consumed almost every waking moment, sometimes leaving me frenzied to achieve all I hoped to do in a compressed moment of time. Trying to balance my veterinary career with my new role running FORCE, (back then a very new and small nonprofit organization), and still be there for my son and husband while battling constant anxiety was taking its toll. I was struggling to keep my head above water professionally and personally, and failing. Two years since returning home to Florida, after all the treatments and prophylactic steps I had taken to survive, I wasn’t really living. And my husband and son, the two people who needed me the most, shouldered much of the collateral damage from my unhappiness.

Tonight walking with Beau seemed no different. As I tried to hurry my son, I was oblivious to his world. I grabbed his hand and pulled him along.

“Beau, it’s probably just a piece of garbage!”

“Mommy it’s a green light!”  he insisted.  “YOU HAVE TO STOP!”  Beau didn’t often defy me, and his insistence took my by surprise. There were so many things pressing down on me; yet, for one moment I considered what my son was saying. For the first time in a while I thought about things from his perspective. I took a breath and I stopped with him.

“I don’t see anything.”
“There it is again!”

I studied the darkness of our neighbor’s yard for a glimpse of Beau’s mysterious light.  There. And there. What had been invisible a moment ago was suddenly revealed. A firefly, several, actually. Bright green flashes, blinking intermittently in the dark.

I was amazed. “I don’t believe it Beau, those are fireflies!”  I told him about the fireflies in New York when I was a child. During my 11 years living in Florida never once had I seen a firefly here. The hurry for bedtime and my weariness now forgotten, we watched Nature’s lightshow together for the next 30 minutes.

The following evening we could hardly wait for dark. It didn’t take long for the show to begin. We chased after the flying lights, then caught one and studied it.  It flashed and tickled in our hands.This firefly was different than others I had seen; the light came from its head. A beetle with glowing eyes!  Later, the Internet informed us our flying friend was Pyrophorus, the only bioluminescent click beetle.

We chased the fireflies for the next few weeks, even relocating some to our own yard. I spent many happy moments reconnecting and sharing joyful times with Beau. How long it had been since I had felt that. That spring, along with the flowers and the fireflies, hope and happiness were emerging; emotions that I had suppressed since my recurrence. From then on, every May, watching for the fireflies became a sacred ritual shared between Beau and I.

Pyrophorus – Photo by Adrian Tween

Sometimes it’s the small moments that emerge from the large and scary events in life to define us. That night, seeing the world from my small son’s perspective opened me up to the joy and wonder I had been missing. Sometimes a tiny dose of joy reminds us how attainable it can be. Since my oophorectomy, May had been a time of grief for me. That spring night restored many gifts that cancer had taken and helped me to recapture and hold on to the connections that had made all my treatments worthwhile.

Several years later, I gave up my veterinary career to dedicate more attention to FORCE and my family. I still think of that night as a pivotal moment when I was reminded what was really important. I still get stressed and anxious and I still sometimes feel there is not enough time to accomplish all that I hope to in life. But I have gained more perspective-more ability to see the world through the eyes of a child.

Although I have heard the glowing beetles can be found here in Tampa, where we moved eight years ago, I have yet to see them. But it is May, and I haven’t looked for over a year. Tonight I will make time to see if I can find one.

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  1. Karen Kramer says:

    This is beautiful and just what I needed today. I am going to force myself to take the time to look for fireflies tonight too!!!

  2. RuthM says:

    Great story Sue. Reminds me of “take time to smell the roses” and is something that all of us, in our daily rush to try to do everything, forget all too often. I know I do.

  3. KristenP says:

    Amazing as always…

  4. Laura C says:

    Thanks for sharing. I identify with this story in many ways. Living through cancer and its treatments really can make one feel like life is somehow on hold. Thanks for the important reminder to keep living.

  5. CArey says:

    love it!1

  6. Tara says:

    I sat in the parking lot of the supermarket glued to your blog. What a beautiful story! I am banking on a happily ever after.

  7. Carrie says:

    This just made me cry and cry…my pbm is scheduled for The beginning of and the anxiety at times is sometimes suffocating. I read a quote the other day that said “happiness is not a destination, it’s a way of life.” so often, even in my pre brca life, I couldn’t wait until this happened or this was over so I could finally be happy! But this is it! This is my life! I don’t want to do these surgeries to live but then not really have a life. Thanks for the reminder…this was a beautiful story!

    • facingourrisk says:

      Carrie you have a loving community of friends to support you through this. It is natural to be nervous and grieve, be kind and gentle to yourself. But I promise you will emerge on the other side and find your joy!
      Much love,

    • tawnia says:

      Hi Carrie… i’m new to a lot of this terminology but I do know in the last 6 to 7 months i have had surgeries to remove my uterus, cervix, fallopian tubes, ovaries, breasts. I am now an IT! Do the surgeries or die is the choice from my viewpoint.. will you be affected by that? Ya!

  8. Lita says:

    Heartfelt, tender & filled with the wonder of a mother’s love. I’m fortunate to have a 6 year old great-grandson to keep me grounded & constantly aware of all the amazing things around us. Seeing through the eyes of a child keeps us young at heart. These kids truly breathe new life into us.
    Love you Sue!

  9. Sandi says:

    So poignant and beautifully written. Thank you and may you and your loved ones only have joyous, fulfilling experiences from now on!

  10. Andrea says:

    Beautiful, Sue!

  11. Anonymous says:

    Thank you, SUe, for reminding us there is a silver lining in every cloud. During my treatments I discovered “nature intervention” walks soothed my angry soul. You have captured in your words the anger and grief the BRCA community feels because we unfairly have so much taken from us, but how strong and thankful and mindful we are of the wonderful joys in our lives because we have learned life is fragile.
    I hope you had a perfect Mother’s Day with Beau.
    Much love, Cherine

  12. Oh Sue, what a beautiful post. Just lovely….right down to the tickle of the firefly in your hands.

    I’m so glad to read this today.

  13. Dee says:

    Thank you so much for sharing . I will now think of looking for fireflies not stopping to smell the roses when I start to worry about a recurrence.

  14. Jackie Fox says:

    Wow. How very true and wonderful. Adore your line about joy being attainable.

  15. Lovely reminder to all of us who worry about recurrence, among other things. Sometimes it is indeed those small moments that define us, or at least cause us to pause and reflect. Thanks for this wonderful post.

  16. Anonymous says:

    This is life-affirming, inspirational, and utterly fantastic! Your words have lifted my spirit today. Thank You!

  17. Anonymous says:

    It would be nice if you could put my name below my picture. Please do. By the way, if you really want to see these insects more, you should pay a visit to the tropics. Guatemala, Izabal or a place like that. They are really quite nice.

  18. Tracy Korhonen says:

    I find myself in the same quandary as you were before you rediscovered the joy of fireflies. Yesterday, May 20, 2013, I saw a video of a young man named Zach who had passed away that same day because of Osteo-sarcoma. I am deeply saddened by the fact that this young, vibrant and loving young man’s life has been cut short, especially due to the ugliness of cancer.
    His story, one filled with love and LIVING, knowing he would die, has given me perspective.

    I too, have not been living. I learned of my BRCA1 status after chemo, before radiation last year.. I have had numerous surgeries and am looking at 2 to 3 more to repair some complications with my implants.Despite this, I have decided that this young man’s example of living gives me no more excuses to stay in the darkness.

    Thank you for sharing you awakening.

  19. wendy unger says:

    thank you sue – such a human perspective – but you have to provide Kleenex….

  20. Jen G says:

    Sue – this is such a nice blog, I love how you describe your son’s and your wonderment with the fireflies. And the happiness it brought you. I had a similar experience with my niece from Spain, she was so amazed by the fireflies – it was so moving to watch her excitement.

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