There’s been a lot of body talk going on in our household this past week. No…not the resolutions kind of body talk. I would guess that we talk about bodies, on average, more than most families anyway, but the subject has been even more present in our recent conversations. Bodies, bodies, bodies. Bodies growing and changing. As of New Year’s Eve we officially have two teenagers in the house. Lord have mercy. Bodies, bodies, bodies. Bodies hurting and healing. Bailey, our second oldest who just turned 13, has been suffering from Post Concussion Syndrome since last August and just recently began experiencing relief from near-constant headaches. Faith, sprained her ankle in soccer (yet again!) this past week and Krisalyn even tweaked her foot when we visited the giant trampoline during winter break to combat the cabin fever that started to settle in. Bodies, bodies, bodies.
“Mommy? Why does there have to be pain?” Krisalyn asks me every time she gets hurt. That poor girl was made with the lowest pain tolerance in this family of accident prone, perpetual toe-stubbers. But her questioning eyes long for an answer that will help sustain her as she copes with the pain.
“I don’t know baby girl.” I respond. “But I do know that pain reminds us of our limitations. It reminds us of our humanness. It brings our attention to our bodies.” These reflections are never enough for her 10 year old mind. I don’t think they’re enough even for my 35 year old mind.
We celebrated Briella’s 2nd birthday on January 3rd. I wonder if there will ever come a day where her birthday can stand alone as the beginning of her story or if it will always feel interconnected to the second act of my own. Will I forever associate her 10:47am exit of the womb with the nearly-fatal pouring out of my lifeblood? Her entrance meant my near, yet spared departure. It was also the beginning of a five month struggle with pain, vulnerability, brokenness and dependence like I had never known prior.
Bodies, bodies, bodies. January 3rd. We were celebrating Briella’s birthday with family, all the while praying for comfort and peace as a friend was in his final hours of life on this earth after a year-long vicious fight with cancer. Images constructed by the descriptions of his body, beaten and abused by the disease continued to invade my mind.
Why must there be pain? I went to bed that night with a heart of desperation. Sleep was well beyond reach, so I drifted as I often do on nights like these, to wherever the thoughts desired to travel. Bodies, bodies, bodies. Images of pain collided with images of pleasure. Memories of days where I would take three different baths because it was the only place I could find relief from the pain would be overtaken by memories of tender moments like when my sister spent a night in the hospital massaging my swollen legs and feet. The imagined picture of our friend lying in a hospital bed fading away while his wife held him and offered words of comfort were broken up with the recollection of the photos I received earlier in the day of him affectionately pinching her behind as they hiked trails in the breathtaking beauty of Beaver Creek. Unwanted memories of abuse were replaced with reflections of the most intimate experiences of love and connection.
Bodies. Bodies. Bodies. These awe-inspiring soul-capsules, being-carriers, life-vehicles allow each of us these full-spectrum EMBODIED experiences. Would it even be possible to experience one side of the spectrum without the possiblity or experience of the other? I don’t know. That’s a question for a far more skilled philosopher than my wanna-be self. The power and beauty of pleasure may not cancel out the horror of pain. But maybe it redeems it. Or maybe it can sustain us. Bodies. Bodies. Bodies.
It is an honor to introduce you to a dear friend Cortney. I first met “Cort” 9 years ago as we were first time moms trying to figure out this new life with a little one. Along with three other first time moms, we formed a playgroup as a way to support each other through the transition into motherhood. Our group of 5 moms with 5 kids has now grown to 5 moms with 14 kids. We still manage to get away for playgroup from time to time, which is now more appropriately titled “Girls Night Out.” We have done life together through many seasons of highs and lows and have experienced great beauty and pain together. We know each others stories well. I vividly remember the day Cort shared she was pregnant with her 2nd and 3rd child…twins! She was beyond excited, yet anxious, and she beamed with that pregnancy glow. Late into her 1st trimester one of the twins she was carrying passed away. The mixed emotions she experienced knowing one twin had lost it’s life so the other could thrive was so heartbreaking yet powerful to watch. Unfortunately, that wasn’t the only loss Cortney has experienced. She has also had to endure the painful death of her mom after a 10 year battle with breast cancer. This is where her story picks up. Please join me as she vulnerably shares her decision to have a preventative double mastectomy a short 4 weeks ago. Here is her truly inspiring story, in her words…
What led to your decision to get a double mastectomy? Can you walk us through the process of that decision?
My mom was diagnosed with stage 3 breast cancer when I was a teenager and fought almost a 10 year battle with it before it finally took her life. Back then, it was very rare to live that long with cancer, so she was a trooper. It started out as a lump in her breast and then metastasized into her bones and eventually into her brain. She underwent so many painful procedures; experimental bone marrow transplants, vertebrae fusing, spinal taps, lung aspirations. Ugh- it was so tough on her. Cancer tortured her physically and the rest of our family emotionally. During the later years of my mom’s sickness, I started struggling with depression when the very real feelings of hopelessness washed over me. We had to stand by helplessly as we watched her become a shell of who she once was. Not fun.
When I entered my thirties, I started getting regular mammograms because of my mom’s young age at diagnosis. My mammograms showed that I too had the same kind of fibrocystic breast tissue that had made my mom’s cancer so difficult to detect. I also had several masses in each breast. Awesome. After a biopsy of one small area, I was told that it was benign, but that there were pre-cancerous calcifications lurking around in there and we really needed to monitor them. This was frustrating to hear as I remembered that years before my mom was diagnosed, she had found a tumor in her breast and her doctor told her, “It looks ok, you just have very fibrocystic breasts. We’ll just monitor it.” Argh! Several years later, both of my grandmother’s were diagnosed with breast cancer too. Both underwent mastectomies but for one grandmother it was too late, she passed away after it metastasized into brain cancer.
Last year my masses grew to the point that I could no longer sleep on my stomach comfortably and I went in for another ultrasound. Once again, they said, “It looks ok, we’ll just monitor it, but you really should go talk to the Genetic Counselor.” After years of putting it off, I went and did a session of genetic counseling where I was diagnosed as high risk due to personal family history (my mother diagnosed early and two grandmothers and a maternal great-grandmother with breast cancer) as well as other factors. I was given a 26+% diagnosis, which means I have over a 1 in 4 chance of developing breast cancer someday. I took the BRCA gene test and tested negative (yeah!) however, this did not affect my high risk diagnosis since I was still placed at the 26+% for developing the cancer in my lifetime. I basically had three options:
1) Monitoring/ surveillance for early detection with a mammogram, MRI, ultrasound and 2 specialist visits per year for the rest of my life. This would cost nearly $2,000 per year even with my insurance.
2) Taking a low-dose of chemotherapy for the rest of my life.
3) A prophylactic (preventative) bilateral mastectomy and possibly reconstruction. I would have no more mammograms for the rest of my life (yeah!).
After struggling through such a painful situation with my mom and then watching both of my grandmothers have double-mastectomies, I really wrestled with the anxiety of the seemingly inevitable diagnosis that many high-risk women like me deal with. I walked into every mammogram, ultrasound or MRI expecting to get a diagnosis of cancer. I dreaded those visits and so did my husband. I also knew that I didn’t really want to keep going back for unending painful biopsies of my growing masses, especially since the number had grown to three by this time. Awesome.
My genetic counselor recommended Bright Pink to me. They are a national non-profit experiential outreach group focusing on the prevention and early detection of breast and ovarian cancer in young women. They provide support for high-risk individuals like myself. I went to some of the events (all by myself) and met some amazingly brave women who are all at various stages on the monitoring and prevention track. I made some great friends among these inspiring women. They helped educate me in the process and give me advice on my situation. This group ended up being invaluable to me through this journey and in my decision making process. I would have been lost without their information, help and support.
My husband and I prayed hard about the decision, asking God to direct us and lead us through the process. Our friends also prayed over us. We asked God to completely close the door if we chose a path that was not for us. I couldn’t ignore my intuition and I quickly came to the decision that I wanted to have the double mastectomy and reconstruction. This way I could be free from the emotional roller coaster of developing the disease that has taken the lives of too many amazing women in my family. I wanted to be able to know that I did what I could to give my two kids and husband the best chance of having me in their world for as long as possible. I want to be able to dance at their weddings and hold my grand babies. Obviously, this is not guaranteed, nothing in life is, but it is a proactive solution to eliminate a very probable outcome.
Tell us about your mom…
She was a light. She was an incredible friend, comforter, encourager, servant, bible study leader and teacher. She was an amazingly gifted mom. She wanted to be nothing else and she was proud of it. I am so proud of her for that. She was extremely gentle yet strong and fiercely protective of her family. She knew Jesus well and walked with Him. She was creative and thoughtful, sacrificial and prayerful. She reminds me of the Proverbs 31 woman: a passage that contains this crazy list of seemingly unattainable virtues of a Godly woman, yet she effortlessly exuded so many of them at once. She bravely faced endless surgeries and scary diagnoses with expectancy that God was going to be glorified through her struggle. She shared her story with the doctors, nurses and everyone she came into contact with.
Every day that passes as a parent I am reminded of how special she was. There are so many ways I wish to be like her. There are so many times throughout the day I wonder how she would react, how she would respond…so many ways I miss my mom. I miss her company. When I became an adult, she became my friend. My heart still aches when I see a mother and daughter out spending time together because I know I’ll never experience that casual closeness of running errands or grabbing lunch with her again. I miss her guidance. She gave the best advice and knew how to speak truth in love. She was an amazing wife. By her example, she taught me how to truly love my husband. I miss her presence in my kids lives. It’s such a tragedy that they will never know her, because she would have had so much love for them. She would have been the first one to offer to hold and rock them to sleep as babies. She would probably be volunteering in their classrooms and planning all of their parties.
It’s been 11 years since her death, and I still can’t believe she’s gone. I felt numb for so long, void of highs and lows. Depression robbed my every effort to grieve my mom’s death in a productive, healthy way. I knew as I was just going through the motions of life that it was wasted time, yet it was so difficult for me to climb my way out of the depression. It took many years before I was finally able to deal with the emotions of loss, confront them, and heal from them. God’s grace has been faithful to cover me during those tough years.
How do you think she would feel about your decision to get a double mastectomy?
I think being supportive would be an understatement. She was an excellent caregiver and she would have probably moved in with us for a month to take care of me and my family! I’m sure she’d also say, ” I wish I would have done that.”
How did your dad respond?
He was excited and a bit relieved. My dad feels that same way my sister and I do, that breast cancer was almost inevitable, so he was extremely supportive. My dad flew out for 5 days to stay with us and help take care of me after my surgery. I’m sure it was difficult emotionally for him to be back in a caretaker role. It probably brought back some painful memories of doing the same things for my mom. I know he enjoyed being helpful though, and he was helpful. I needed that.
Continue reading Cortney’s story in Part 2…
*Cortney is a wife to Ryan, a mama to Kieran (9) and Cale (7) and her favorite drink is Sangria. We are so thankful to Cortney for gifting us with this powerful story. We invite you to engage her story in the comments section below. May all of our reflections and comments bring honor to the beauty of her story.
From the moment this blog idea began swirling around in our heads and in our conversations, I had this particular woman’s story in mind. I first came to know her when she was only a year older than my eldest daughter is at this moment in time. She was just a girl, but even then, her smile was infectious, her beauty undeniable. I still remember the night I saw her face only days after she had learned of the death of her father. I have never known a face that could hold together innocence and suffering as poignantly as her’s did all those years ago. It was one of the first faces that came to my own mind only a month later when the news of the Columbine shooting first began to break. As heartbreaking as those two tragedies proved to be, Margot’s story did not end there.
Let’s begin with your story…
Just over three years ago I began experiencing strange physical symptoms. I would suffer from severe headaches and my hands would hurt. At one point I thought I had carpal tunnel but then realized my symptoms didn’t really match the criteria. I would also have these odd experiences where I would answer the phone at work and I wouldn’t be able to speak or find a word. I felt extremely discombobulated and off balance. That’s when I started to think that maybe I had a brain tumor. That’s what I do sometimes. I go to the worst case scenario in mind. Which is probably connected to my story and the experiences I’ve had.
But then the symptoms would just disappear for awhile and I would return to feeling fine. It was like nothing had ever happened, so I convinced myself that it was nothing. Until the symptoms would return again. And the symptoms were becoming more and more difficult to ignore. Each time the symptoms would return I would do my own internet searches which would always lead me to some kind of scary diagnosis. So once again I would second guess myself and wonder if I was just acting like a hypochondriac.
Then there came a day when I could no longer ignore the symptoms. Both of my legs went numb. I remember talking with my husband and we finally acknowledged that this was something serious and that I needed to get into a doctor right away. I started with my primary care doctor equipped with my internet research. I asked him if he thought I might have Multiple Sclerosis (MS). Initially he did not seem to think that was the case and after several visits and him conducting an MRI on my lumbar spine to see if I had a pinched nerve or anything else that would explain my symptoms, he finally referred me on to a neurologist.
We were only three weeks away from a trip to Italy. I knew that I needed answers before then. So when I called the neurologist’s office and they told me that I wouldn’t be able to get in for a few weeks, I completely broke down over the phone. I just felt really powerless. I knew I needed help at that point, that this was something more serious. Fear was starting to settle in and I needed help. I decided to search online again but this time it was to find a nearby neurologist. So I called up the first one I found and she got me in within the next week.
When I arrived at her office, her first question was completely random, “What year were you born?” I looked at her and responded, “1984…why?” And she simply said, “Because you wrote 1884.” Once again, there it was – it was further evidence of the cognitive impairment I was periodically experiencing. By the end of our first appointment, where I shared my long list of symptoms she indicated that she wanted to further explore a possible MS diagnosis but would need to conduct an MRI to be sure.
So there it was. The months of wondering and denying and thinking came to a halt in that moment and I began to cry. In many ways, my neurologist was a fantastic doctor. She advocated for me to get an MRI the very next day. She took my symptoms seriously and didn’t make me feel like an idiot or a hypochondriac or a crazy person. But on that particular day, her bedside manner left something to be desired. She asked me why I was crying and I replied, “Well…you think I have MS.” I felt like it was a significant diagnosis. She, however, proceeded to tell me it was fine, that it was going to be okay. But it wasn’t okay.
What have you learned from this part of your journey?
It is so isolating when you have a diagnosis of any capacity. People would say, “At least you don’t have cancer.” And I get that. I understand that those kinds of diagnoses are significant life-changers. I’m painfully aware of how serious a cancer diagnosis can be since I lost my stepfather, John, to pancreatic cancer after already having lost my biological father and surviving Columbine. I knew this diagnosis wasn’t going to kill me, and I was thankful for that, but at the same time this wasn’t something insignificant either. MS doesn’t just go away. It is in my body forever.
The majority of people were very compassionate and very kind. But some people would turn it around and somehow make it about them or they’d give me advice about a new diet. Thanks, but no thanks. Or they’d tell me about their great aunt that has MS.
Why do you think people responded that way?
I get it. It’s hard to see people hurting. And it’s hard to not have something to offer. You feel dumb. But all I really wanted was for people to say, “I am walking alongside you.” I didn’t need people to tell me to be thankful for what I had and thankful for it not being something more life-threatening. I’ve learned that it is really hard for all of us to just be quiet, to listen, or to simply respond to the people we see going through pain with a heartfelt, “I’m sorry…this sucks!”
The truth is, I know I’m not the only person who has MS and it’s great knowing that there is a community of people in the world figuring out how to live with this disease. I am not alone. But my story is also unique. I was 27 when I was first diagnosed. I hadn’t even started a family yet and I didn’t know how all of that would be impacted by this disease.
Where are you at in your journey with MS now?
I began treatment right away for a couple of months before becoming pregnant. I went off of treatment during the pregnancy and was unsure of how that would play out, but surprisingly my MS became dormant all on its own throughout the entire pregnancy and remained dormant while I continued to breastfeed for a long time. This was such a significant break for my body. It was such an empowering experience. I became so thankful for what our bodies are actually capable of – I mean, I grew a humungous kid inside of my body. The fact that my body, this body that suffers from MS, could give life and sustain that life is amazing.
This past March, I began to experience a relapse with the MS. The main symptom is numbness throughout one of my arms. There have been some embarrassing moments because of the numbness and me dropping things. It’s a humbling experience. Living with this diagnosis feels different now. I know that I’m going to be okay so the fear doesn’t settle in the same way. It’s still incredibly sad to think about at times. When I see someone walking with a cane, I wonder if that’ll be me someday. That’s the deceiving part about MS – you can feel relatively well, but there can still be so much going on inside your body and you’re unaware and have no real control.
What do you want other people to understand about your story?
Before any of this happened to me I would have thought that people could just “happy themselves” out of their struggles. But that just wasn’t possible and I learned that what I really needed were people who would let me feel whatever I needed to feel. I told my closest girlfriends that I needed them to let me feel this. I just needed to be pissed off. I knew I would eventually be okay, but I needed them to let me feel whatever I was feeling. I wanted to be able to safely ask, “Why God? Why something so hard again? Why do I have to be the person who has this disease?”
At this point in my story, I’m able to look back at all that I’ve been through and have a fuller understanding of how strong of a person I really am. And I know that this strength did not come about from my own doing. It’s who I was created to be. But I needed to be pissed for a period of time in order to get to where I am now. More than anything at this stage of my life, I think of the fullness of my life. I think of how I’ve moved through all of these experiences, how I keep moving through them. Time gives you a different perspective on all of the things you go through.
What have you come to understand about the Divine in the midst of your story?
I have come realize throughout my life, ESPECIALLY with my MS diagnosis, that God is still working me…of course He is. I am moving in a direction to become a person I am proud of. It’s not because I am personally so great, but I think that what I do well is strive everyday to look at life with a fresh set of eyes, not always clear or perfect, but fresh and new. I know I am God’s Beloved Daughter and I do not take that lightly. When I became a Christian there was a constant reminder that life in Christ and through Christ was not always going to be easy, we will struggle but I try hard to place my hope in Him and to not allow the fears of past events or future things dictate how I live and love. But of course, all of this is obviously easier said than done.
When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ~Henri Nouwen
*Margot is a wife to David, a mama to Wyatt and her favorite beverage is a vanilla latte with cinnamon powder. We are so thankful for Margot. Her willingness to share her story with us and with all of you is evidence of her courage and vulnerability. We invite you to engage her story in the comments section below. May all of our reflections and comments bring honor to the beauty of her story.
In the end, we’ll all become stories. ~Margaret Atwood
Trauma has the power to strip us of all the layers we’ve worn around like clothing through most of our lives. It can bring us into contact with our primal, more fragile and vulnerable self. It reveals who we are when we come face to face with the possibility and reality of our inevitable death.
I am not trying to be dark and dismal as I am keenly aware of the fact that we all just emerged on the other side of Holy Week and are supposed to be lingering in the afterglow delight of sayings like “He is Risen” and “the tomb is empty”. We were only supposed to sit with the heaviness of death from Friday through Sunday morning…right? I’m not so sure that’s true at this point in my life. In actuality, the lengthier my story becomes, the greater my capacity to hold both life and death simultaneously. I’m beginning to think that this correlation between my days on earth and my capacity to bear the heaviness of both life and death is in part due to the time I’ve spent getting to know that more vulnerable part of me in the face of indirect and direct forms of trauma.
Last night I wound up observing the traumatic experience of another. My mother was helping out with childcare while I was finishing up a workday. She delivered our nine year old to her soccer practice and was entertaining our one year old until I was able to arrive at the field. Shortly after she settled onto a blanket on the sideline there was a freak accident in the parking lot involving three vehicles and one of the cars striking a mother and her four children while she was loading two of the children into a stroller. The mother and her children were all transported to the hospital but fortunately none of them suffered life-threatening injuries.
I pulled into the parking lot nearly 20 minutes after the mother and her children were taken by ambulance, but the evidence of this horrific scene remained. The vehicles had not moved. There was glass everywhere. People surrounded the area and watched as police officers tended to the ensuing investigation and firemen managed the aftermath. After surveying the expanse of the scene, my eyes eventually rested on the man responsible for striking the woman and her children. That’s when I felt an all too familiar shudder within my own body.
I woke up this morning still feeling the weight of what had happened inside my own body. In the few moments of quiet throughout this day, I have been wrestling to understand the implications of that shudder. I was overwhelmed with compassion for the man most likely deemed responsible for the accident, so I knew that the shudder was in no way reflective of judgment or repulsion. If I felt anything toward this stranger it was curiosity around how his story had collided into the stories of the victims. We often go through the motions of life exhibiting little to no awareness of just how interconnected all of us really are until our stories bump against each other in some way. Beyond the curiosity, however, I began to recognize that I was projecting my own experience of trauma upon this distraught man. I imagined he was feeling incredibly raw, vulnerable and stripped down in those moments following the accident.
Therein lies my visceral response. The shudder. The stripped down naked shudder. The raw shudder. The shudder that is more appropriately linked to a category of awe than of fear, though they’re difficult to distinguish from one another at times. It was a shudder of remembrance of what it is like to come face to face with my own fragility. It was a shudder that conjured up a recollection of moments where all of the noise and inconsequential stuff that fills our days and the pages of our stories was held at bay. The shudder was the reminder of what happens in the aftermath of trauma when we are left begging the question – what is all of this really about anyway? The shudder recalls the given answer to that proverbial question. The given answer that could be heard and known in a deeper way when trauma had left me utterly naked and entirely aware of my own fragility. The answer that still reverberates throughout my being in moments of stillness – that LOVE is all that matters, it is the truth, the reason we are all here. It is what lives on when we do not.
Sometimes in the aftermath of trauma death and life kiss and give birth to love.