The Grief Spot

june 21It had been a rough week. Sometimes it’s the date and sometimes it’s the day. This year it was both. June 21, 2010 is when I brought Claire to the ER and our lives were forever changed. It was a Monday, the day after Father’s Day. It was a typical cool-ish, overcast June day. Not too hot, not too cold, humidity hanging in the air. This year, now nine years later, I was bracing myself for the anniversary of the date, June 21, which was to fall on a Friday. However, it was on Monday that I felt it all coming back. Who knows what triggered it? Perhaps the weather which was eerily very similar to that day in 2010. Or perhaps because it was a Monday, the day after Father’s Day. That’s the thing with grief. You just never know when or why exactly it hits when it does. At any rate, as the day progressed I almost felt as though I was suffocating from the memories pressing in on me. I felt it physically in my body as I was transported back in time. Emotionally I was overcome with paralyzing sadness. I became very thankful for the unexpected cancellations of clients and made it through my relatively light work day.

Tuesday and Wednesday I began tackling a painting project in my kitchen. But my energy was lacking and my whole body ached. Facebook reminded me that on the same date a few years back I had been painting my kitchen. That intrigued me because I have discovered one way I manage my grief is through remodeling and painting projects around the house. Not surprising I was painting at this time of year. My physical symptoms increased and I thought I was catching the cold my husband just got over so I bulked up my vitamins D and C and tried to boost my immune system to ward off the germs. A cold didn’t materialize but I continued to feel worse and by Thursday I was barely functional.

Then came Friday, the actual date of June 21. I felt slightly better but was glad I was scheduled to see both my chiropractor and acupuncturist in hopes that they would do their magic and my aches and pains would disappear and my energy would return.

I left the chiropractor feeling quite discouraged. I have been having trouble lately holding an adjustment. The ribs on my left side seem to frequently go out – something I have not experienced much previously. He told me what I already knew – my spine is beginning to hunch forward and I’m developing the “old lady hump” (my words, not his) just like my mom had. He said it is not hopeless, however. With dedication and work I can most likely correct the issue, or at least slow down the process. But the first thing that popped into my head was, “This is a result of my grief.” We conversed about the impact of emotional trauma on the body before I headed to my next appointment.

 

You see, the natural physical response to grief is the fetal position. To curl up into a ball of protection. Internally and externally protecting and hugging your wounded heart. And during the time of Claire’s death I also had surgery on my left breast to remove my own cancer so I imagine my body was extra protective and huddled inward. It has really only been in the last two years that I have felt ready enough or safe enough or healed enough to actually open up my chest. To stand up straight with my shoulders back and take a deep breath. Even as I write those words, however, I feel the vulnerability in that stance. How can I lay my broken heart out bare in the open again? Some days I can’t. But I can much more now than I have been able to so far. In light of this it makes sense to me that the ribs on my left side, under my heart and breast keep going out. They aren’t used to being open and out there. They have been protected for many years. I have to retrain my body and my spine to feel safe again and strong and stand upright. It is no small thing.

fetal position

So when I arrive for my acupuncture appointment, I give a short recap of my chiropractor visit and the significance of this date. As I attempt to describe to her the physical symptoms I had been experiencing most of the week it dawns on me that what I have been feeling were the same symptoms Claire had the week before I took her to the hospital. I got chills with this revelation and don’t have words to describe the emotional intensity of the illumination. The cellular bond between a mother and her child is a fascinating mystery. She proceeded to feel my pulses and place the needles where my body was telling her they should go. Some I couldn’t feel go in at all. Others stung and sent a powerful and slightly painful current through my body. One of those was in my right upper chest. When I commented on it, she told me that was the “grief spot.” Wow. Of course. Then a few minutes later I asked if there was a needle pulling on my right arm near my elbow because I felt a searing, tugging, pain. She looked, but there were no needles in my arm at that place. I showed her the spot where I was feeling it and she said, “That is your heart spot.” Another wow. I said, “Of course my heart hurts right now.” She finished her needling and followed it with some energy work. Every time her hands passed over my chest I felt like I was suffocating. Like a very heavy burden was crushing me and making it difficult to breathe. However, with each subsequent pass it lessened, until finally I felt lighter and like I could take a deep breath once again.

While this may sound way “out there” to some, others may resonate with my every word. I guess it doesn’t much matter. I don’t have scientific research to back up anything I’m saying, I’m just relating what my experience has been. It is one thing to academically study the physical manifestations of grief and trauma as a mental health professional. It is another thing entirely to live it. I live it every single day. And every day I feel like I learn something new.

I did feel better after my appointments. My energy returned and the constant aching of my entire body subsided. I did notice the next day, however, that there was a small bruise where the needle entered my “grief spot” and it lingered for almost three weeks. “Appropriate,” I thought.

emptiness

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.

 

 

 

 

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.

 

 

 

 

 

 

 

Grief Is Not An Olympic Sport

Practice makes perfect. But not with grief.

The 2018 Winter Olympics just concluded. If you watched the skiers or the bobsledders before their runs they would typically be off to the side in a meditative state rehearsing the course. They had memorized each twist and turn and their minds and bodies knew what to expect, being prepared for each upcoming curve, angle, or zig zag. Of course at times there would be variables such as the weather changing the consistency of the snow or ice, or a random squirrel showing up on the course 🙂  But aside from external factors which could throw off their time by a hundredth of a second or so, influencing the outcome of the race, the fact is they all knew the course. They knew what was coming and they were familiar with the run because they had done it before. And barring any tragic fall or equipment malfunction they all finished.

But here’s the thing with grief. Time and practice do not help. Because the course is constantly changing. Once you think you have become familiar with the ebb and flow or the twists and turns of the grief course you are catapulted into foreign terrain. So here I am standing at the pinnacle of year six ready to fly down the icy mountain toward year seven relying on my memory and practice of how I veered through the course at year one, or two or three or four or five, and I look down and realize this is a completely different mountain. I don’t recognize anything because I’ve never been here before. But I am thrust forward nonetheless. Some years I get lucky and I stay upright, make good time and even enjoy the view. I may slow down or even wipe out but am able to get back up and make my way down to the bottom of the slope. But some years I don’t even get out of the gate. I stand paralyzed with fear or am just numb, not even aware of how my legs are holding me up. Or I head down the hill with confidence only to be blindsided by an unwelcome obstacle that knocks the wind out of me and suddenly I am buried by an avalanche struggling to even breathe.

I know people mean well, but time does not heal all wounds. Trauma does not exist within the framework of time. My body is unaware that six years have passed. My body senses the position of the sun and connects the dots to recall the trauma that occurred on March 1, 2012 at 3:06 a.m. and suddenly my body is hurled back to that moment in time. My chest is heavy, it is difficult to breathe, I feel exhausted from lack of sleep and caregiving around the clock for my dying daughter, the lymphedema in my left arm throbs as a reminder of my surgery and radiation for breast cancer which was occurring during that time frame, my heart races with anxiety as I face a new unknown life of living without my youngest child. And just because I have already done this for six entire years does not mean I know how to do it for even one more day. But life goes on and somehow so will I. Hopefully writing this will help lift the burden slightly and unlock the paralysis so I can once again venture down yet another mountain of grief and make it to the bottom only to be towed back to the top to do it all over again.

 

DEAD END

Ever have one of those days when it feels like everything is a dead-end? The person you need an email response from has an auto reply “out of office,” the website you need to make critical updates on is down, important phone calls are all met with voice mail recordings…I think you get my drift.

Well I feel like I have been stuck in a dead-end for the last several months. I think it began at the 5 year anniversary of Claire’s death on March 1 when I realized, “I don’t know how to do this anymore.” Prior to that I had felt like I was beginning to get a handle on the grief thing. I thought I understood the ebbs and flows, I knew to “ride the wave” of grief, I comprehended that it had a mind of its own, etc. But something happened at the five-year mark. I don’t even know what and I don’t know how to put it into words. I just knew I felt different and it was unfamiliar territory and I did not know how to navigate it – and still don’t.

So here I am, wandering around in the dark, running into dead-end after dead-end.

  • I feel the incredible pain and anguish of grief bubbling up inside me, just on the cusp of breaking loose, but it stops short. Dead End.
  • I sit down to write but my muse is MIA and words are unable to appear on the page. Dead End.
  • I attempt to prepare for a class I am teaching this summer but thoughts and ideas elude me and my brain can’t seem to comprehend simple words and concepts as I try to read relevant information. Dead End.
  • I carefully count my calories each day and put in my required 5-6 workouts per week only to see the scale stuck in place month after month. Dead End.
  • I feel overwhelmed with sadness at the state of our country with all its injustices and inequities, but feel powerless and lack energy to make a difference. Dead End.

The thing about a Dead End is there is no outlet. That is not good. At the risk of becoming too graphic in my use of metaphor, if we are unable to expel the waste after ingesting food, it becomes toxic and can kill us. It needs a way out. Or I think about the health of rivers due to the flow –water comes in and it goes out. As opposed to a body of water which is closed off and becomes stagnant. I feel that my flow is blocked but I don’t know how to break it open. Do I blast it open with a stick of dynamite? Do I chip away slowly like Andy Dufresne in The Shawshank Redemption? Do I back my way out the way I came in and look for another route? Is any of that even possible?

One of the most irritating things for me to hear in my grief journey is the old adage that “Time heals all wounds.” I want to cry “Bullshit!” Time can make the wounds go deeper. It creates new wounds. Claire has never had the chance to meet her new brother-in-law. She wasn’t able to attend the weddings of her father or her mother to their new spouses. She has never seen the house I live in. Life goes on but she is not here to experience it with us. And that is not okay with me. It never will be. How do I maintain my sanity while trying to move forward in a time where she doesn’t exist in physical form while hanging on to a past in which she did? And who would she be as a 23-year-old young woman? Would she like whisky or vodka or neither? Would she have a boyfriend? A girlfriend? Would she live on her own or with roommates? Or with us? What career would she have? Would she have been standing on I-94 last night making her voice heard for justice and equality? Or would she quietly express herself in a different way? WE DON’T KNOW AND WE NEVER WILL! And that frankly feels like a big fucking DEAD END. Literally.

On a lighter note, this picture was taken several years ago while Dan and I were visiting his dad and step-mom down in Florida. We had a good laugh at the indisputable connotation of that intersection, probably both secretly wondering if it were some sort of omen regarding our own relationship. I insisted on snapping a picture with him posing proudly, possibly inferring that this was his personal mantra. But here we are some eight years later still happily residing on our own Lovers Lane. So I guess not everything is a Dead End. And that is what keeps me going. And maybe remembering that will help things start to flow again.

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Six Years

I feel it first in my body. Something about the warmth of the air or the position of the sun or the smell of summer that triggers my body into a panic response. I feel the anxiety building, first with a knot in the pit of my stomach and then the tightness in my chest and then the sense of dread, fear, and sadness all rolled into one accompanied by the distinct realization of complete powerlessness and finally erupting into a volcano of emotions begging to be released through tears but held at bay until I am able to find a safe, secluded place.

 

This all occurs instantaneously before my mind catches up to remember the date. Oh yeah, it’s June 21. That’s what is going on. Here we go again. Six years later I relive the day my life was forever changed. The day I took my sixteen-year-old daughter Claire to the Emergency Room. Nothing would ever be the same again. Nothing.

 

I feel pulled back to that day and want to be there again. Because Claire was still here then. Because maybe if I could go back knowing what I know now things would have turned out differently. Maybe because I want to go back to not knowing what was about to happen? Maybe because hope (and denial) existed then.

 

But because it is six years later I now know everything that did happen. So I am not only taken back to the day, but to the pain, struggle and trauma of the following years which started with that day:

 

Learning about the disease Rhabdomyosarcoma, and that Claire had the worst type, Alveolar, and that hers was stage IV, and that older kids had less of a chance than younger ones. Watching her cry as her golden locks fell out and never returned. The emotional roller coaster of scans – feeling hopeful when the tumors shrank and feeling devastated when the cancer returned and took over. Being treated for my own breast cancer and going to radiation on the day she died, informing the staff (who also knew her from her own treatments) that she had passed. Attending her high school graduation and hearing her name called but not seeing her walk across the stage; my eyes burning with tears as her whole class gave her a standing ovation. Learning to live with the endless grief and hole in my heart and then learning to enjoy life again, but always in a different way. Standing beside my husband while he lost his only son at the age of 23. And now, just days ago, he said his final goodbye to his dear mother.

 

So I will honor this day as best I can, allowing the anxiety and emotion to ebb and flow, crying with the painful memories, smiling and laughing with the good ones, and giving Raja special food today, her birthday. The actual date is unknown to us, but Claire decided this was the date we should celebrate the birth of her precious kitty instead of focusing on how it was the date that changed her life forever. June 21.

raja in car

A Typical Day in the Life of a Bereaved Mom

Woke up this morning from a dream where Claire had died but was alive again and had a second chance. The only thing that might save her this time is if I took her place and died. So I got hooked up to the IV which would push the lethal drugs through my body but then she died anyway. For some reason everyone else still wanted me to go through with it. I started freaking out and screaming that I didn’t want to do it anymore because I still wanted to live and it was too late for me to save her anyway. But people were upset with me because of my decision. I didn’t care and I just threw myself on the ground and sobbed because my baby was dead.

 

Good morning. And so the day begins. Takes me a while to shake off the horrible sense of fear and helplessness caused by the dream but so what else is new? First task of the day to complete the paperwork for my jury summons. Great. They want me to serve the week we have a vacation planned. I ask to be excused but only after being traumatized once more when I have to fill in the blanks on the questionnaire answering: Ages of Children: (1) ______ (2) ______ (3) _______ (4) ______ (5) ______. FUCK! I fill in the appropriate ages for my three living children while screaming inside “I HAVE FOUR CHILDREN!” For a moment I consider filling in the fourth with “18 but deceased” and then realize how ridiculous that is. I think to myself that this should be an essay question, not one constrained to a couple of numbers. I wonder, “Why the hell do they need to know how old my children are?” I go on to the next section feeling as though I have betrayed my youngest child by leaving her off the list and not making her existence known to the government representatives; strangers who have reopened my wounds and intrusively made their way into my most personal story without even knowing or caring.

 

Next I make my way to get my hair done, ready for a change of style. In trying to explain what I might like I realize Claire’s hair was a lot like mine and hers always looked so cute (when she had hair). I pull out my phone to show my stylist Claire’s face (and hairstyle) which is the screen saver on my phone. This and other photos of her are my only means to be warmed by her smile or look into her bright eyes. A comforting yet painful reality I deal with on a daily basis. So what else is new?

 

I shove down my sadness and tears because I need to shift focus before I get to work so that I am able to be fully present with my clients as I bear witness to their own painful stories, traumatic events and small and large successes. In the middle of one session I make the split decision to share the fact that I have lost a daughter to cancer, believing in the moment it will be of therapeutic benefit to the client. But after the session is over I doubt myself and wonder if that was the right choice or not. I tell myself it is ultimately okay because if nothing else, they will know I am human and have experienced great loss, which hopefully will increase their trust in me as their therapist and not diminish it. It is, after all, my reality and makes me who I am.

 

Driving home, feeling the warm summer air lifts my spirits and causes a deep stabbing pain in the same breath as I anticipate the anniversary of Claire’s diagnosis in a couple weeks; the weather and position of the sun always remind me of that summer evening in 2010 even before my brain remembers the date.

 

I get home to be greeted by Claire’s cat Raja waiting for me in the window. I open the refrigerator whose door is covered with pictures of all my kids and Claire at various ages. I sit down in the living room and she stares back at me from her framed senior picture.

claire senior year

I walk down my hallway to be greeted by her large canvas painting self-portrait. I watch Raja jump up at things that don’t seem to be there and run from room to room as though she is chasing an invisible string. I choose to believe Claire is playing with her, which makes me want to laugh and cry in the same moment.

So time for bed. I wonder where my dreams will take me tonight.

International Bereaved Mother’s Day

(So I wrote this last year [2015]. Overall I still feel the same way however I discovered that while last year I took offense to finding out we had a special day and didn’t want to be singled out, this year I find myself feeling slightly glum because no one has acknowledged the day to me. Not a big deal, really. Just a passing thought. Sigh. Such is the hypersensitive, contradictory, enigmatic, unpredictable life of the grieving mom.)

 

Apparently the first Sunday in May is International Bereaved Mother’s Day. One of my friends reached out to me to tell me she was thinking of me on this special day, but I was completely unaware of its existence. My initial response to her was, “Every day is bereaved mother’s day for me.” I don’t know much about who founded this day or why but I did discover it is relatively new. I imagine the intention in creating this day to acknowledge bereaved moms was out of a compassionate place, but to be honest, I’m not sure how I feel about it. I mean Mother’s Day is next week. I still am a mother even though I have lost a child. Obviously the celebration of Mother’s Day for a bereaved mom can be a painful reminder of our loss, but do we really need our own day? When you lose a child you suddenly gain membership to this club that no one wants to be a part of and it often feels isolating. People feel awkward around us. They don’t know what to do or say. Sometimes it is easier for us to be excluded from normal activities because people don’t know how to handle us. Like we have some kind of contagious disease or something. People are afraid of saying the wrong thing or hurting us. What they don’t realize is it does not hurt us more to be reminded of our loss. We feel our grief all the time. If someone says our child’s name or talks about them it doesn’t make us sad because it reminds us of our loss (like we could forget…), it actually makes us feel better to know that our child is not forgotten. Life does go on and it can be healing for us to be able to see our child’s friends grow up and hear about what they are doing. Is it painful? Absolutely! But everything is painful after losing a child! As a bereaved mom, however, we need to be the ones to decide if we can handle it or not. Please do not decide for us. So when I hear about a special day for bereaved moms, a part of me feels excluded once again. Like when you lose a child regular Mother’s Day isn’t for you anymore. I am sure that whoever invented this thing did not mean for us to feel excluded, rather acknowledged and honored, but grief has a way of creating hypersensitivity, especially when you get used to experiencing subtle (and sometimes not so subtle) rejection time and time again after losing a child. Whether it be a friend who can’t be your friend anymore because your loss is too much for them to bear, or not being invited anymore to girls’ night out or play group or family gatherings. As if it’s not bad enough to face the death of your child, oftentimes more loss follows – loss of friends, loss of family, loss of identity, loss of belonging. So I’m not sure how I feel about International Bereaved Mother’s Day. I don’t really want to be acknowledged as a bereaved mom. I want to be acknowledged as a mom who loves her kids, dead or alive, and I’d like to know that my child who has passed is still remembered. The best thing you can do for a bereaved mom on this day or any day is to say their child’s name and that you remember. Tell them how their child’s life made a difference. Share a memory or a funny story about their child. Don’t exclude them. Invite them. And let them decide if they can handle joining in. And if they are having a hard day and can’t, be kind and patient and invite them the next time.

So now I know that there is such a thing as International Bereaved Mother’s Day. Maybe next year I will feel differently and I will embrace the day. But for now I will celebrate regular Mother’s Day feeling thankful for all four of my children, including the one who is with me only in spirit.

 

Jane Frick,

Mom to Hannah, Ellen Seth and Claire

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Raging Grief

My daughter Claire is dead. She died at the age of 18 while a senior in high school from a “rare” childhood cancer, alveolar rhabdomyosarcoma. And the thing about having a dead child (well, one of the things) is that I am full of rage. Rage that must be acknowledged, ignored, hidden, managed, contained, revealed, suppressed and/or worked through on a daily basis. Every. Single. Day. Most days I do an okay job of keeping it at bay. I’m pretty sure people that see me regularly don’t observe my rage or feel its intensity. But every so often it gets tired of being politely masked and it comes unleashed. Like now, for instance. I have felt it brewing for a while and have been painfully aware of the things which have poked and prodded it out of its slumber, but still was unprepared for its dramatic appearance when I blew up at my husband for a completely unrelated matter. Once it was out, however, I quickly became its puppet, becoming numbly insulated from myself and going through the motions of an out of body experience, simultaneously feeling devastation, sadness, hopelessness, anger, helplessness and inconsolable pain.

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And the last thing I need as I try to wrangle my grief induced rage back into the corral is to be repeatedly exposed to a raging, arrogant, misogynistic, hate generating xenophobe masquerading as a presidential candidate. It is beyond my comprehension how successful Donald Trump has been in his latest endeavor to rule our country with his iron fist and orange face. I am beginning to lose faith in humanity. I knew that racism still existed, on a personal and institutional level. I knew that there are people who fear what they don’t know and are angry. I knew that White privilege is alive and well. I knew that in spite of women being told, “You’ve come a long way, baby,” sexism still rears its ugly head. What I didn’t know, however, is just how many Americans are still clinging to those hurtful ideologies. And that scares me. And it also makes me realize how many of us are full of rage. Maybe all of us? I mean, some things should be raged against, right? Like injustice, violence, bigotry, rape, murder, cancer. Far be it from me to begrudge anyone their rage since I am so full of it myself. But I see Trump abusing his followers by tapping into their rage and welcoming it and giving it space to play out regardless of who it may hurt. And he does this for his own benefit. Again, it boggles my mind that anyone can believe a narcissist has anyone else’s best interest at heart. I could stay on my anti-Trump soap box all day, but in the end I don’t know that it will make a difference anyway, and the more I think about it the more my own rage expands. So I am left with once again trying to manage my rage while allowing it to be expressed. How the hell do I do that?

 

I’m not sure if my latest raging bullshit makes me more reactive to Trumpgate or if the political climate has contributed to my recent rage attack. Chicken vs. egg situation I suppose. But that’s the thing with the erratic rage of grief, every day we face situations which heap rubble, gravel, glass shards and sharp metal objects onto the trebuchet waiting to fling our rage into whatever happens to be in the way when the weight becomes unbearable. Thinking back on the last several weeks I suppose it makes sense that I was due for a release of rage….

  • February 10 –the second year anniversary of the death of my husband’s son, Ben.

 

  • February 14 – while most of the world celebrates Valentine’s Day, I will forever remember this date as the day we brought Claire home from the hospital to die, hearing the doctors tell us “There’s nothing else we can do.”

 

  • February 26 – attended the unveiling ceremony at Regions Hospital of the Donor Wall acknowledging those who have donated organs where Ben’s photo is displayed.

 

  • March 1 – the fourth anniversary of Claire’s death.

 

  • March 5 – the anniversary of Claire’s cremation and 20th anniversary of my father’s death.

 

  • Receiving a letter indicating I was denied the option to purchase life insurance because I had breast cancer four years ago, even though I am probably in the best health I’ve been in my life right now. Apparently I’m too great a risk and the insurance company thinks I will die too soon for them to make any money off me.

 

  • Business taxes.

 

  • And then there’s this, which is not a bad thing at all, yet evokes all sorts of conflicting emotions within me…. All of Claire’s friends are getting ready to graduate from college this year. I am so proud of them and happy for them as I hear news of them becoming journalists, educators, world travelers, musicians, activists, inventers, world changers…for the better! But the pain is indescribable as I am left to wonder what contributions Claire would be making to society and that she never got a chance. And she would have made such a positive impact. She had such a kind and loving heart full of passion for social justice and was an amazingly talented artist. To be honest it makes no sense to me that she was taken and someone like Trump is allowed to go on living and is damaging humanity in the process.

 

And so now my rage has calmed down for a time, turning into a dull headache after getting these words onto the page. When you see me I will smile and tell you I am fine but know that the rage always lurks and requires vast amounts of energy to remain contained.

 

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Another Birthday Without You

Claire should be turning 22 on December 17. Her friends are getting ready to come home for Christmas as they finish up their final year of college. I imagine if she were still here I would have to stand in line to spend some time with her. I suppose she would be stressing over finals and anxious for the break to see her friends, celebrate her birthday and Christmas, and play with her cats; especially Raja, but Bill, too. However all I can do is wonder. Wonder what it might be like. I will never know that reality. I only know the reality of painfully navigating my own emotions at this volatile time of year and making sure our family continues the ritual of honoring her birthday with “dinner and a movie,” her final request which we were not able to fulfill while she was still with us in body. Obviously she is always with us in spirit. Some days this provides comfort and other days it only brings frustration and sadness. This year I will be out of town on her birthday because Dan and I will be relaxing on our honeymoon. I have mixed emotions about being gone, but we will celebrate her birthday as a family after we get back and Ellen arrives home to spend Christmas with us. Funny how I can feel like I am abandoning her by going on vacation over her birthday even though she is not physically here and will be with me just as much on the beach (or perhaps more!) as she would home in this unseasonably warm Minnesota December.

I wrote a letter to Claire on her birthday last year which I posted on her Caring Bridge site. I just re-read it and aside from the age specific details it communicates exactly how I am feeling this year so I’d like to share it with you:

December 17, 2014

Dear Claire,

Another birthday without you here.

This year you would be turning 21. Is it weird that even though you died when you were 18 I still think of you as continuing to age and I now see you as 21? So many other parents who lose children refer to their loved one as “forever 18” (or 15 or 7 or 2 or however old they were when they passed). To me you don’t feel forever 18. In my mind I saw you turn 19 and 20 and now 21. Maybe it’s different for me because you became an adult before you left us. I got to see you as an adult – I don’t have to imagine it. For that I feel very fortunate. But it certainly doesn’t lessen the pain.

 

Around this time of year I feel my grief looming. It first shows up as anxiety –the familiar churning in my stomach, heart palpitations and shortness of breath, feeling like I’m going to crawl out of my skin, wanting to scream, run, hide and disappear all at once. As the anxiety increases it turns into anger. First an undertone of irritation, then culminating into rage with no place to go. The energy needed to keep the anxiety at bay and hold back the powerful waves of rage exhausts me and I finally give in to the overwhelming sadness, feeling powerless, distraught and left with only my tears and sobs. Broken, once again, crumbling under the intense weight of loss and the missing piece of my heart.

 

But even as I write this, in the midst of my pain and my tears, I see you and I hear you beckoning me to a place of joy. Wanting to show me how happy you are now and how beautiful and healthy and complete. I feel your love for me. I feel your spirit. Your presence is apparent. I see you with my heart and I touch you with my soul. Wonderful and yet horrible at the same time because my physical being aches for your physical form – impossible and the reason for my inexplicable grief.

 

Feeling crazy as I hold such contradictory emotions all at once. Utter devastation and peace. Uncontrollable chaos and calm. Absolute resistance and acceptance. How can these things coexist? I do not know but I experience it every single day.

 

I wonder how you would want to spend your birthday. Would you let us buy you your first “legal” drink? I’m guessing you might not even like it – unless it was a strawberry daiquiri or Riesling – definitely something sweet. I remember your irritated glares when you used to complain about my red wine at the dinner table, letting me know loudly and clearly, “it stinks!” But maybe by now your palate would have matured and you would have been able to enjoy the right of passage into adulthood by ordering that first drink and showing off your license to prove you are of age. But I guess we will never know. Instead we are left to toast your memory when we go out for dinner and a movie in our attempt to honor your (literally) dying wish which we failed to do while you were still here clinging to life.

 

Flashbacks of birthdays gone by flood my thoughts – from the day you were born (or even before that when I would play with your moving limbs, gently pushing against them while they would internally glide across my abdomen, making me feel like an alien had taken over my body) to your final birthday celebration 18 years later where so many friends and family gathered at Obb’s Bar, all of us privately knowing it would most likely be your last, but none of us wanting to admit entertaining such a horrific thought. You taught us to live in the moment and make the best of whatever time we had. You danced that day, showing off your Xbox Dance Central moves and less than a week later were unable to walk because of that damn cancer. I can still see your mysterious look as you pondered your wish before blowing out your candles and I wonder what you wished for, although I think I know….

 

So happy 21st birthday my dear Claire. Please leave signs and reveal yourself in some way to us on your special day. You will always have my heart and I will forever be your mom.