Category Archives: Cancer

The Illusion of Time

 

The calendar informs me that it is the last week of February 2019. However, my body and parts of my mind believe it is 2012, the final week of my daughter’s physical existence on this earth.

 

Claire’s calendar
Claire’s room.

 

 

 

 

 

 

I feel the exhaustion of sleepless nights and long days of administering morphine, painstakingly watching labored breathing, curling up next to her in bed and holding her unresponsive hand. I feel the lymphatic swelling of my left arm and pain of a damaged rotator cuff; residual effects from the daily radiation I was receiving at the time for my own cancer. The tenderness and inflammation around the scar on my left breast feels exaggerated, reminding me how the tumors, along with half my breast, were cut out of my body to save my life while at the same time I stood by helplessly as life was slowly being taken away from my precious Claire.

I am filled with anxiety in anticipation of knowing and not knowing what is and was to come. Rage rears its ugly head in a contextually inappropriate fashion because it doesn’t comprehend time. It only feels the excruciating injustice that MY DAUGHTER IS DYING AND THAT IS NOT OKAY!!!!

The temptation to comfort my aching soul with food and drink is both inescapable and ineffective.  Self-loathing is added to the endless list of grief and pain as every fat cell in my body expands, believing the cortisol-driven lie that I am in danger. I have not been able to convince my body for all these seven years that I am safe and no longer facing a life-and-death situation. My efforts at eating all the right things and burning as many calories as possible seem to be in vain. For some reason my grief belly keeps growing. My reassurances that it is okay for my body to let it go have been met with resistance and the reminder that I carried Claire in my belly and perhaps her cells still linger. How could I ever let that go? Perhaps it is just not yet time. I feel Claire’s look of disgust and the roll of her eyes indicating that I should stop complaining and love myself the way I am. Tall order for me today.

I find myself ruminating over the old, yet fresh-feeling, wounds of abandonment and rejection by a few, but significant, friends and family members during this time and shortly after Claire’s death. I still do not understand what I did to deserve a life sentence of cut-off at the lowest and most vulnerable point in my life. Another question that apparently has no answer and makes no sense. So why do I keep trying to figure it out?

Endless emotions bubble up like an internal volcano searching for an escape. It’s like morning sickness (or a hangover – take your pick) – throwing up makes you feel better, but just for a while until you need to do it again. So I verbally vomit and am able to relax for a bit until things begin to percolate again and the process repeats, ad nauseam.

As these most recent thoughts have evolved into words and sentences, I realized that it is not only the writing that relieves me, but also the need to be heard. I do not know where this comes from exactly, but in light of this revelation it does not surprise me that I am a professional listener. And perhaps because of the pain I have endured I am better equipped to comfortably sit with my clients in their pain as I perform the sacred act of bearing witness, which is an integral part of the healing process.

So I thank all of you who bear witness to my pain and who are willing to listen to the nuances of my grief and loss. Most weeks I live in a type of alternate reality where I appear to be fine, and partly am, but have no idea how to reconcile the loss of my daughter with the continuation of my life. So it is set aside in a way when I present to the public. But not this week. Not the final week of February which culminates at 3:06 a.m. on March 1 when Claire took her last breath. This week I will not even pretend to be okay, even though, ironically, in some ways I am; which even I do not understand.

 

 

 

 

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When Personal Anguish Intersects with Collective Trauma

 

Eight years ago today I was introduced to my daughter’s killer. Of course none of us knew it at the time. But an innocuous visit to the Emergency Room on a Summer Monday evening eventually proved to be deadly. By Thursday the killer’s name had finally been identified:  Stage 4 Alveolar Rhabdomyosarcoma. Still unaware of the dangerous threat to the life of my then 16-year-old curly haired blonde vibrant daughter, Claire, we moved forward with quickly beginning an intense and lengthy treatment in hopes of stopping this killer dead in its tracks. Refusing to Google statistics, I didn’t realize her chance of surviving another five years was a mere 5%. And as fate would have it, she only made it 20 months.

So every year since 2010 on June 21 (and sometimes days leading up to it) my body, my mind and my heart re-live that day and all the trauma that followed. Unless you have suffered the loss of a child, it is understandably difficult to imagine what it feels like. Even though my husband Dan was intimately involved and completely supportive during Claire’s illness and death, it wasn’t until he tragically lost his own son, Ben, two years later that he said to me, “I thought I understood, but I didn’t until now.” I responded by telling him I was so sorry that he understood.

So it is one thing to carry on in life while enduring personal tragedy. I have learned how to navigate my way through my private grief these last several years, able to focus on my own sadness while feeling relatively safe in my world. But things have changed recently. We now find ourselves in a different kind of world. One that feels more unsettled, darker and scarier. Maybe it has always been that way but my privilege has insulated me from the harsh realities that others more marginalized than myself have experienced on a daily basis. At any rate, I have had trouble finding words to describe how our nation’s shift toward uncertainty, divisiveness, anger and even hatred has added unfamiliar layers and dimensions to my grief. No longer do I feel safe in my world. No longer do I have a basic foundation of trust for our leaders because of the lies that are told every single day and the confusion produced by the frequent gas lighting. It doesn’t feel safe anymore to hold space for my personal grief when I have so much fear for the world around me.

The latest turn of events, however, has captured my heart in a dreadful way. The fact that those in power have chosen to act inhumanely by separating children, even infants, from their parents for trying to enter our borders is unconscionable. I am not saying there should be no vetting process for immigrants, but there are humane and decent ways of doing it. My own grandparents were immigrants. Those who are making these horrible decisions are only here because they have descended from immigrants. Regardless of anyone’s views on immigration policies, this has crossed a dangerous line. Permanent damage is being done to these developing children by removing their secure attachment figures at such a traumatic, transitional time in their lives. My heart is so broken over this. All I can think of is the pain I live with every single day having to live without my daughter. I would not wish that on my worst enemy. Cancer killed my child and took her away from me. I hate cancer for that. How in the world can another human purposefully decide to inflict pain on another like that? I do not understand. The world is watching and the world is weeping. And my personal grief is now magnified by thousands as I feel the pain of those parents and their children. I hope and pray that their separations will not be permanent like mine.