Grief.  It’s an emotional experience so powerful and all-consuming one wonders if survival is possible.  Loss and subsequent grief seems to be something that those with CF experience quite regularly.  The loss of time when respiratory therapy treatments take multiple hours a day.  The loss of the ability to breathe easily and have energy.  The loss of spontaneity in having another exacerbation and being confined to IV antibiotics.  The loss of patience in having to call the mail-order pharmacy for the fifth time because they billed incorrectly… again.  The loss of having a romantic relationship in which you don’t have to discuss FEV1 numbers and life expectancy.  The loss of the family you wanted to have.  We become masters at balancing this emotional tension and managing these losses. 

Thankfully, I have always been considered “healthy.”  I played college tennis, survived graduate school, and gave birth to a healthy baby girl.  Recently, I have experienced loss in many forms, and frankly, it has kicked my butt.  My health has declined considerably in the last two years resulting in the mandatory resignation from my career as a behavioral health therapist.  At 29 years old, I am no longer engaged in what I consider my calling. 

In January, my dad was suddenly diagnosed with stage 4 brain cancer.  I have the funniest, sweetest, most loving father in the world and the thought of losing him is unimaginable.  Since his diagnosis, my entire body, and especially my lungs, feel heavy.  I feel powerless, inconsolably sad, and more angry than I thought possible.

What do you do with all this loss?  As a therapist, I can tell you the clinical answer.  You allow yourself to feel.  There is no way to move through grief other than to grieve- to experience the pain.  In facing these emotions, I usually feel pretty sorry for myself.  As if this chronic illness isn’t hard enough, those with CF are human too and subject to all the hardships humans face including crushing, debilitating loss.  My pity party usually snowballs culminating in lying awake at night nursing my ultimate fear- my husband and daughter losing their wife and mother to this awful illness when they need me most- and then I remind myself who I am.  I tell myself that I am, in no way or form, powerless.  And I find ways to take back the power I have over my life.  I continue to be fully compliant with treatment.  I keep a gratitude journal.  I recite affirmations each morning.  I am assertive with family and friends about my needs.  I laugh with my daughter and husband.  I find meaning in the time I have with my dad.  I practice mindfulness in order to stay in the present and abandon anxiety about the future.  I go to therapy and process these difficult emotions in order to live more deeply.  Most of all, I exercise and experience the strength and resiliency that my body provides. 

Engaging in these activities doesn’t necessarily make the pain of loss go away, but it reminds me that my life is my life and I’m not at the mercy of tragedy.  Each day is a new day and it is our responsibility and opportunity to walk out of the haze of fear and doubt and embrace the light of power and strength that we cling to- even in the darkest of times. 

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(This post was written by guest blogger, Laura Jay-Ballinger who is also a two-time CFLF recreation grant recipient.  Laura has a Master's degree in clinical psychology and has worked in primary care and long-term settings as a psychotherapist.  You may contact her at:  jay.laura.ann@gmail.com)