In the middle of treatment for her cancer, Claire decided she wanted to be on the MTV show True Life. She wanted to increase awareness around childhood cancer and she wanted the world to be able to see what it was really like for a teenager to be faced with the challenges of intense chemo therapy, radiation, surgeries, and the constant, lingering possibility of death. She sent in an application online and one of the producers called her back. She was so excited. But in talking with the producer, she was informed that her particular story did not fit into any of the specific topics for upcoming shows. The producer acknowledged Claire had an amazing story to tell and was impressed with the candor, vulnerability and maturity which Claire revealed in that conversation, but politely apologized and that was the end of that.

Even though Claire was disappointed at first, on more than one occasion during the very difficult times to follow, we both looked at each other with mild relief that no cameras were following us at that particular moment. No one to hear our harsh words with one another when we both had been pushed beyond our limits. No one to hear her wails of pain and anguish as she simply tried to go to the bathroom. No one to see her standing with her walker, trapped by her own vomit. No one to see her slowly lose her ability to walk, speak, see and hear.

But then again no one was able to witness her amazing fortitude and stamina as she sang in every choir concert, painted masterpieces in her art class, dressed up as Voldemort for the latest Harry Potter movie, traveled to Washington, D.C. with her choir and New York City with her siblings, and to Disney World with her family for her Make A Wish trip where she rode all the scariest roller coasters more than once, laughing and joking and living life to the fullest even with her crooked little smile which was a result of the cancer invading her brain.

So today I am filled with regret and sadness that her story was not documented on film. Why didn’t I suggest that we do our own “True Life” and get a video camera that she could use herself to show the world her perspective of what was going on? I would give anything to be able to see her living, moving image once again. I have so very few videos of her. I was so focused on keeping her alive I never allowed myself to entertain the thought that one day she might not be here and videos and pictures would be all that we had left. But at the same time I fully understand why we didn’t. There was no more room for anything else at that time. Fighting the cancer, keeping up with appointments, living life, being together, fighting my own cancer, trips to clinic, hospital, school, making time for family and friends, playing with the cats; this is what filled our days and at the end of each we would collapse exhausted into bed where we were unable to sleep because of all the worry and trying to wrap our brains around what was happening. And yet now, today, I wish we would have somehow been able to make the room because I can pretend that if we had it would bring me comfort and lessen the pain of my loss. But deep down I know that this is not possible and no matter how many videos I would have to look at it would never be enough.  Because the harsh reality of our True Life is that cancer stole my baby and I am left to hug and kiss her only in my mind and dreams

I love the sun. On cloudy days if the sun peaks through I immediately feel my spirits lift, a surge of energy rush through my body and suddenly life isn’t all that bad. Claire, on the other hand, I think had a love-hate relationship with the sun. Before she had cancer she enjoyed sunny summer days at the beach or pool and always looked forward to her “summer hair;” an even blonder version of her “winter hair” complete with sun kissed highlights.

But cancer has a way of changing EVERYTHING. During her twenty months of treatment there were those occasional sunny summer days when she actually felt good enough to enjoy the pool at our townhouse, soaking up the sun and getting in some physical therapy in the water to help combat her neuropathy. But after cancer we were extra hyper vigilant about making sure she was covered in sun screen, especially her beautiful bald head. And I know in the back of both our minds was the nagging fear, “Will the sun make her cancer worse?” I do not know the medical answer to that question but just thinking about the possibility that the sun who had been our happy friend could now become our distrusted enemy earned its way onto the list of “How We Have Been Robbed by Cancer.”

And then there were the days when she didn’t feel well, which were most days. We had started out our cancer journey at St. Paul Children’s where the clinic was “cozy” and the rooms were tiny windowless boxes complete with a secret toilet tucked away in the cupboard!  Making the move to Minneapolis when the two clinics merged was a challenging transition, but among the “good” of the change were the spacious, luxurious infusion rooms with those big windows. Walking in there for the first time I could feel strength returning to my soul because now I would be able to feel connected to the outside world during those long days of chemo and transfusions. Claire was not so thrilled, however. Much to my disappointment, every time we came on a sunny day, regardless of the season, the first thing she would ask me to do was to close the blinds. Of course I did it, because she was the one being poked and prodded and getting pumped up with either toxins or blood. While it made me personally sad to say good-bye to the outside world for the day and to the nourishing sun which would help to soothe my own soul, I realized that it was a small price for me to pay in order to help make my daughter as comfortable as possible in an extremely uncomfortable situation. I never really knew why she wanted them closed. Maybe the sun hurt her eyes, or she had a headache, or she wanted to block out the outside world because she couldn’t participate, or she just wanted to crawl into a dark cocoon. It doesn’t really matter why. As cancer moms we do whatever we can to help our child through this scary, tedious, unfair process. So sitting there in the dark helped me get a very small glimpse into what it might be like for Claire. Her life as she had known it had come to an abrupt halt. Many days she was not able to do what she really wanted to do because of her physical limitations. When I put it in this perspective, giving up my sun for the day was nothing. I couldn’t make my daughter feel better, I couldn’t fix the cancer and I couldn’t take her pain away. But I could sit with her in her darkness.

I wonder who ever thought it would be a good idea to borrow the discoveries of Elisabeth Kubler-Ross regarding how people react to their own impending death and apply these principles generally to the experience of grief. It certainly was not her intention. In the Foreword to the 40^th Anniversary Edition of Kubler-Ross’ On Death and Dying, Dr. Allan Kellehear states, the book “…was never a study of grief and bereavement. It was a discussion of some key emotional reactions to the experience of the dying. Yes, grief was a part of that experience, but it was not the totality of the experience.” And yet somewhere along the way it became commonplace to refer to Denial, Anger, Bargaining, Depression and Acceptance as The Five Stages of Grief, thus putting undo pressure (in my opinion) on the bereaved to grieve not only correctly but in order. It is not to say that these characteristics are never a part of someone’s grieving process, but as someone who has had my fair share of grief and loss, my own experience has taught me it is complex, unpredictable, and unique to each person’s experience. In fact I believe grief has a life of its own.

Until a few years ago I suppose you could say I had a casual relationship with grief. I had said good-bye to grandparents, aunts, uncles, cousins, parents and even a friend who took his own life. But in 2012 I entered into a new, very intimate relationship with grief due to the death of my eighteen-year-old daughter Claire to cancer. This grief was all consuming because a part of me died on March 1 at 3:06 a.m. along with my daughter. To this day I cannot take a breath without a stab of pain knowing there is a hole in my heart that will never be filled in the same way. After almost two years I was just beginning to feel like life was worth living again. I could see possibilities of a future that included moments of enjoyment and happiness as my boyfriend Dan and I purchased a new home together and began settling into our neighborhood and I eased back into working. But then our world was suddenly turned upside down…again. Dan’s twenty-three-year-old son Ben died unexpectedly. How could this be? I thought lightening didn’t strike twice in the same spot. Unknowingly we had assumed since we had already turned in our “death of a child” card we wouldn’t have to repeat that horrific event, but I guess we were wrong. And so now we know the difference between watching your child die slowly and being blindsided with the news that your child is on life support and will never recover. And the difference between these two experiences is ultimately that there is no difference – they both suck! And now we both know the experience of having lost a child who was our own flesh and blood and losing a step-child. Painful knowledge that I would be content to live without. Dan told me shortly after Ben died that after Claire’s death he thought he sort of had a clue, but realized he didn’t. Until it happened to him. I told him I was so sorry that now he knew.

Even though I am being critical of putting grief into the box of stages, I do understand our need to be able to conceptualize the intangible and explain the inexplicable when it comes to grief. I have come up with my own way to describe facets of one’s grief experience based on my personal relationship with grief as well as what I have observed in others. And maybe if I am lucky enough, someday someone will borrow my ideas and misapply them just as they have done with those of Kubler-Ross. However, instead of categorizing into stages I have identified three aspects of grief which do not follow any specific pattern, can happen simultaneously or not, are not linear and yet maybe they are, and are fluid and ever changing and evolving. The words I have chosen to express these facets are:  Reeling, Realizing and Recovering.

Reeling is that feeling of being hit by an emotional tornado, hurricane and/or tsunami. It is hard to breathe, your head is spinning and everything is a blur. This time is also characterized by complete and utter exhaustion. You go through the motions of living without really wanting to be alive. You are in a state of shock and everything feels surreal. You have to remind yourself of what has actually happened because it all feels like a bad dream. Waking up in the morning is especially painful because you must face the horrible reality of your devastating loss.

My response to the Reeling phase has been exemplified by spending lots of time on the couch escaping into reality television, sleeping for 10-12 hours a night and crying a lot. I have also been known to self-medicate (which I certainly do not recommend), but numbing the pain became a priority to me during this time. And fortunately I had wonderful friends who would come over and make me go with them for a walk to get me out or would bring me food or Kleenex without me having to ask.  Also very important to me during this phase (and possibly all of them) is finding ways to honor my loved one and keep their memory alive. My daughter died a couple months short of her high school graduation. As painful as it was, our family attended the ceremony in her stead and cheered through tears when they called her name. Ironically, Dan’s son also died before his college graduation, so once again we attended another graduation ceremony for a child who had died.

Realizing is when the shock and numbness begins to wear off and it turns into devastating sadness, anger and rage. This is the time when you have to re-live the loss all over again but on an emotional level which can be exhausting. This is also a time when you learn to live a dual life. Behind closed doors depression, grief, sadness and anger are the norm but you go through the motions and pretend to live life on the outside, trying to act “normal.” By this time there is usually a cultural expectation that enough time has passed and you should be “over it” even though in reality that is ridiculous. Relationships change and become redefined during this time. You learn who you can trust with your grief and gravitate toward them. Sometimes people leave you because they can’t handle it and sometimes you have to distance yourself from others because of their unsolicited advice and judgments.

I found myself seeking out emotional support when I began Realizing. I connected with other bereaved parents online and in face to face support groups. I was also drawn specifically to parents who had lost a child to pediatric cancer. It was comforting to know others had faced similar circumstances and had survived.

Recovering is the ongoing process of healing and learning how to live with the constant companion of grief. Energy begins to return. Some days are up and some days are down, but the down days become fewer and farther apart. The ache of grief becomes familiar and you are able to embrace it without feeling devastated. From the outside looking in things look “normal” – you go to work, engage with others, laugh, have fun, complain about trivial matters like everyone else. In contrast to being dragged by others when Reeling and faking it when Realizing, Recovering is self-driven and genuine.

One of the most profound and healing discoveries for me during this time was learning how to continue my relationship with Claire in a different way. Death does not end a relationship, it just changes it. Obviously if it were up to me I would prefer to have my daughter back in the physical realm, healthy and happy. But I honestly believe my relationship with her has grown in ways it could not have if she were still alive. Another part of my ongoing healing has come through being able to give back by volunteering for Momcology (http://www.momcology.org/), a unique support community for mothers and primary caregivers of children with childhood cancer, especially working with the bereaved moms. I am also thankful that my life experiences with grief and loss have enhanced my work as a therapist. I have learned to become comfortable sitting with pain and after enduring the loss of a child there is not much left that intimidates or frightens me. I am aware, however, of my continuing need for self-care in light of possible triggers when faced with my clients’ reports of their own grief and loss and trauma. But at the same time I am honored to be entrusted with hearing their sacred stories which continually remind me of the shared human experience and that I am not alone in my suffering.

This morning as Dan and I were eating breakfast I looked across the table at the love of my life and my heart broke again when I saw the expression on his face. Complete and utter devastation and sadness. He is coming up on the one year anniversary of his son’s death and has just started a new job. Even though in the moment I was in a place of contentment and being okay with my life, I was reminded of how quickly that can change when you carry the burden of grief. I knew there was nothing I could say or do to make him feel better but I also knew from experience he would not stay in that place forever. I was also reminded of how as bereaved parents every stress we face, like starting a new job, is magnified because of our grief. Anxiety, panic attacks and flashbacks are commonplace and sometimes it is impossible to untangle the complexity of our emotions; whether they are a “normal” reaction to stress or if they are grief induced or if they are a combination of both. This is how we must learn to live our lives. I believe it is best to honor our grief, allow it to make its appearance when necessary and enjoy the moments when we feel its oppression on a smaller scale. And by the end of the day maybe Dan will come home happy and I will be back on the couch because that’s just how grief is – it’s stageless.

References

On Death and Dying – Elisabeth Kübler-Ross Foundation. (n.d.). Retrieved January 12, 2015, from http://www.ekrfoundation.org/five-stages-of-grief/

The 5 Stages of Loss and Grief. (n.d.). Retrieved January 12, 2015, from http://psychcentral.com/lib/the-5-stages-of-loss-and-grief

Stage of Grief Models: Kubler-Ross – Grief & Bereavement Issues. (n.d.). Retrieved January 12, 2015, from http://www.amhc.org/58-grief-bereavement-issues/article/8444-stage-of-grief-models-kubler-ross