Sick of the Hard Times...

When you are sick of making the best of the hard times…

Writing has provided me a unique gift.  As a result of my writing, I have been fortunate to communicate with countless people all over the world. Most of them I will never meet. These special humans become singular friends. In many cases, these relationships are born from our shared parenting situations. People see me as the fierce advocate, as a woman with boundless courage and grit. They see the Snow White and Pop Tart mom. The mother who knew in her bones what needed to be done.

You are right to see me as fierce and unwavering. The Kathryn you encounter is the risen phoenix, the one who emerged from the ashes, reborn and full of life. She is unshakable in her protection of her children.

I have not always been this woman. As humans we are a messy bunch. Who we become is based on countless experiences, all of which define us. Even though I appear as a fierce protector, I still have my own daily struggles and anxieties which can limit aspects of my life.  

When I speak with parents or friends, I’m often told, “Kathryn, you seem to be the only person who not only gets it, but get’s me.”  Honestly, it is the loveliest compliment. The truth is, I have a gift, born of my own childhood trauma.  I can sit with your pain without flinching or discomfort.  For some people it can be scary. I do messy. I can listen, comment free from judgment on your situation, and as a result you often begin to see me as your friend.

Relationships, especially friendships must be a two-way street. To that end, I think I need to share a bit more of my pre-phoenix self. Since we moved West, I don’t often share my rare disease history. This raw place holds my vulnerability, my woundedness and is complex for me to parse. To introduce you to her, requires me to return to the source of my deepest pain and the darkest moments in my journey. I have been told; this Kathryn is the most beautiful version of me. I will let others make that decision. And while it is excruciating to share this version of myself, she has stories and lessons to tell.

For over eight years I was extremely ill and at times my health was life threatening. I survived a laundry list of issues with my lungs including pulmonary embolisms, more than a few worries about my heart like pericarditis, and terrifying allergic reactions which caused anaphylactic type episodes. I was living daily with an undiagnosed rare disease which limited my ability to live a normal life. I would have good days and a few good months, but every time, my illness would come raging back—tossing me into the ER and hospital. I would scrape, claw, and battle, to access world class treatment. In time, I will receive what some would call bleeding edge treatments to get stable.

My survival is a miracle. You will never tell me otherwise. The convergence of the correct NIH medical team, the access to free medications being used for research (which I would have never been able to afford) all would combine for my benefit. This unique drug cocktail would work long enough to stabilize my health before it ultimately failed. Something that can happen with rare conditions like mine. But luckily it would be enough, and it would save my life.

To get to that team would take years, even though NIH’s main gate was seven miles from my front door. The lessons to get me there, would teach me how to become an advocate and protector.

These are the skills I would harness to get Norah well. I had been on the receiving end of many so-called brilliant doctors at leading medical institutions. These individuals would downplay my symptoms, ultimately delaying me by years from access to the correct treatment. My experiences ultimately taught me how to spot poor medical treatments and horrible medical advice. Knowing what poor medical care looked like, how to see when a medical professional was out of their depth or didn’t care would become invaluable. It is never easy when you realize you are sitting in the office of a world class physician who just doesn’t get it—you walk away confused, frustrated, and realize you must find new answers alone.

Let me be clear, this experience without question is what kept Norah alive.

For years as my children grew from babies to elementary school students, I would battle with medical professionals who because they hadn’t seen my still undiagnosed rare disease, either didn’t believe me, or dismissed my symptoms.

My medical journey would lead me to have escalating and deep anxiety.  I would learn to manage my mental health with both medication and therapy—the exact behavioral treatments my daughter would need to battle anorexia years later. When I was transparent about my anxiety, many of the doctors would latch on, explaining this was clearly all psychological. Some thought I was a depressed housewife searching for attention. Which remains the kinder and gentler comment, some would offer.  Because no one seemed to understand or fathom why their current treatments were not working. Clearly, I wasn’t fighting hard enough to get well, I would be told.

As a result, I would build my own team, which included a therapist and an unwavering Harvard trained Critical Care pulmonologist. Both believed me, challenged me, and fought to keep me alive. They also had the reports, data, and labs to prove it wasn’t in my head.

In the darkest times, the sleepless nights I was alone in the hospital, the anguish I experienced was indescribable. I need to be clear, I never considered any version of self-harm, what I did do was beg the Divine to call me home. If I wasn’t going to get well or stabilized, I needed an end to my suffering.

I was no longer a wife and mother. I was a drain on everyone I loved, especially my husband, both financially and emotionally. I certainly couldn’t be a mother to my precious children—far too often I didn’t bathe them, read stories, bless their foreheads, or sing the final bedtime song. I missed countless nights of tucking my newborn in her crib or my sweet Irish Prince into his first big boy bed. I wasn’t there when they had a nightmare. I was often too weak to get out of my own bed. It was Jeff who did the overnight feedings. I was too sick to nurse my own babies.

This was a devastating time which lasted years.

I would find myself exhausting the roots of my faith tradition to find the spiritual teachers to guide me through the unrelenting grief, loss and suffering I was enduring.

Years later, I needed to revisit this anguish on solitary walks on the beach. I would use the sounds of the ocean, the predictability of the tides, to fortify myself, to meet my daughter in her own unique suffering. I knew intimately what it was like to feel alone in a body which had failed. To not understand which parts were telling the truth and which lied. To dream of escaping, if only for an hour, for a reprieve from the unrelenting pain. A pain no one else could see or understand.

This truth would make me tenacious to save Norah from anorexia’s grip.  I also knew in my bones; I didn’t fight for my life to lose her to this insidious disease.

In the years I waited for medical answers, my peers skipped off to the park or long vacations, while I faced the mental exhaustion of weekly labs at the doctor’s office. It often took me longer to load and unload my car with my newborn and toddler then it took to simply draw my blood.  Would my numbers look better this week, or would we try another medication with horrific side-effects to make me well?

For years, I would wear long sleeve shirts to prevent stares from the bruises, the black and blue track marks from blood draws and countless medication administered via IV to stabilize my fragile body.

Without question, this experience taught me to sit with Norah’s distress. I could support her while she shook with fear bite after bite, I didn’t flinch when the team inserted her feeding tube. I welcomed it. The feeding tube was sustaining life in her fragile body. My lived experience taught me to watch every number on her monitors, I knew her vitals better than her medical team.

I was the one who taught Norah not to flinch about blood draws. She had stood by me for most of her life watching me have tube after tube drawn. It would be my lesson, to teach her blood work was a simple errand, and the gateway to the day’s best adventures, a trip to the bookstore, or a pedicure .

At some point, I would lose track of how many times I placed my nearly naked body on yet another cold surface for some umpteenth scan or examination. All in the pursuit of elusive information my body was concealing—some medical explanation as to why my lungs or heart continued to fail in my thirty something body. I would smile at the technician and doctors making the same small talk, but while my body was present on the table my spirit was elsewhere. I could feel myself leave my body during these explorations.

My body was no longer my own, it was a science experiment, a fascination, a medical mystery. Why does your body do that? Your case is so unique and interesting? I’ve never seen anyone have such a systemic physical reaction. I became that woman, an object for investigation. The young medical students would gather around, I was the caged animal in the zoo.

As Norah’s mother, I knew exactly what was happening in meals. When I would watch her shut down, literally she would go dark, and the eating disorder would emerge. While the mechanism was different than mine, the physical dissociation was familiar.  I needed to bring her back, I couldn’t let her leave. I had to force her into the meals. I could take the rage, but I would not stare into the emptiness of the shell of my child. I wanted to battle ED, because that’s the only way I could win.

I instinctively could process the horrible sensations of fullness and the anxiety around food. They were familiar to mine when I struggled with every breath. I worried, would my breath become more labored? What would I do if I couldn’t catch my breath when I was alone with my children?

I knew exactly why she continued to disassociate, to escape her body, not wanting to acknowledge the anxiety or the sensations she was acutely feeling.

Friends and family thought I was crazy when each summer I purchased a more revealing bikini—compelling Norah to wear it in our backyard with only me. Only after several times, would I purchase Norah a more modest bathing suit of her choice. She needed to make peace with her body, and how it continued to change as she grew out of childhood into her teen years. I continue to teach her to meet herself in her own discomfort and integrate the feelings into the whole woman she was/is becoming.

Nearly five years later, she requires more calories than her peers, and will for the remainder of her life. I’m honest, its horribly unfair and I’m sorry, but this is where we are. I tell her. While her peers drink Diet Coke and eat air, she eats meal after meal—she doesn’t have the luxury to skip or forget to eat.  For the remainder of her life, she will be required to protect her mental health, her body, and her spirit with more skills than others. She will live differently, something no teen or any of us want to admit. And today she is doing everything we ask of her… everything.

But even still, this final piece has been the hardest to imprint on Norah, that you don’t settle for partial recovery. You eradicate every bit, every left-over trace. It would become more than the painful excavation of body image. It is an understatement to say the eating disorder changed the trajectory of her journey.

As Norah’s mother, it was my job to teach her to make her own peace. I continue to teach her this truth:  

Once you make your peace, you live free. You are compassionate and loving of your whole self. You see yourself with fresh eyes, seeing your full beauty as both fragile and strong. You also deeply love the messy and broken parts, and you give thanks your body has kept you alive. You become thankful for all of you and as a result the risen phoenix emerges.

 I believe with age and maturity she will understand this beauty and the full joy of her recovery. I know this because it is my truth too…

When you do this work, it provides you the strength to have the bad days, you begin to know they are short lived, blips and bumps happen. They don’t derail you. Before you know it, you are back to living a fuller, richer, and more robust life.    

In that moment Norah will be in full remission where she can openly say, “anorexia tried to rob me of everything… I win every moment I live my best life free from its clutches.”

I thought fighting for my life was the hardest thing Jeff and I would face. Anorexia would be harder. It makes Norah’s recovery all the sweeter.

As I have gotten older and maybe wiser, I have changed my thinking on the concept of silver linings… I’m not sure I like the phrase, because I believe they minimize the suffering and experiences in our journey. What I will acknowledge is without question, my own health struggles saved my daughter’s life. I would absolutely go through all of it time and time again to protect and save Norah. But there is no silver lining to both our suffering… there just isn’t.

In the darkness of my medical journey so many years ago, I spent time preparing my future storytellers. These select women would climb onto my king-sized bed, sipping wine and eating snacks. I would be propped up in bed, sipping tea— on a cocktail of medications, including narcotics, while continuous oxygen was administered through my nose allowing my lungs to rest. The pain in my body was unrelenting, every breath was agony.  These women healed me more than oxygen or meds ever could. We would laugh to the point of tears, and only if my cough would behave—too much coughing and my mother or Jeff would send these besties home.

The group would become smaller still, when I would frequent fly into one of my numerous ER or hospital admissions. These women have all seen my body, in all versions of naked, the bruises, the full body sweats, the crippling chills, the unending coughing, and vomiting. These were the women, who would administer shots into my weak body when Jeff traveled on business.  It was this circle who, stood strong, never faltering, loving me in my most fragile—when I was unable to care for myself. They drove me to endless appointments, sat in doctors’ offices. Holding and loving my children when I was unable to hold my own precious Beauties. They fed me; they changed my children’s diapers… they loved me in the deepest most sacred spaces.

Without question, the hardest remains the preparation I gave my husband. On the darkest of nights in our bed, Jeff would patiently listen as I described the type of woman I wanted him to marry. What I wanted for him, in his second wife, the woman who would grow old with him. She would see the dark hair turn to salt and pepper and ultimately become white, his young hands become the hands of wisdom and age. This fierce woman would attend all the firsts I would miss, the cheering on the sidelines, the broken hearts of first love, the emergence of puberty, shopping for bras and the first men’s electric razor for Ian. It would fall on this woman, to be present in the moments when my children would have long forgotten my touch and voice. She would be there in my place, beaming at my Beauties. I needed Jeff to pick the woman who would love them as deeply as I did. I wanted him to be unabashedly in love with her… to love and protect her, to make her happy, so she could love our children completely. 

I prayed for this woman, and it was the hardest— to envision a world for them without me. Memory is strange, over the years Jeff maintains he can’t remember these conversations. I can tell you we had them often.

My faith would remain singular in this journey. I have always had strong faith and it would never be deeper than in this period. I would come to allow only one friend, Kate, to bring me Communion when I was too sick to attend Mass with my family. As a Catholic, the Eucharist is the most intimate of Sacraments.

When Kate’s mother died, after decades of battling breast cancer, she would give me her mother Lilly’s rosary beads. They were worn with a patina of daily use— a lifetime of devotion, prayer, and faith.  I adore Lilly, she guided and still guides me. She taught me how to fight and win. To this day, Lilly’s rosary is my primary rosary, always at my bedside. I can’t explain the significance of this gift—the word treasure can’t even begin to describe these holy beads.

In addition to being in my inner circle, Kate is a nurse. She holds the rare privilege of always being there at the worst—including the fateful day she called the ambulance when my breathing was labored. She got the even better job of having to call Jeff at work to meet us at the hospital. No husband should ever have to follow his wife’s ambulance on the freeway while she is being transported. No one.

Today, I marvel at my own strength, my ability to let my closest friends into my darkness, to soak up every moment with them. I find it difficult to describe the love I have for these women who selflessly stepped into the darkness to meet me. They could have easily walked away, and many did. I’m humbled by their friendship.

My medical team has given me the healthiest seven years of my life. It has allowed me to be the mother I never dreamed I could be. Can I parent the way my closest peers do? No. What I can do, is the best version this body allows me to be. To gain this full wellness, I left my DC based medical team and my dearest friends. The selfless joy they each have for me, to see me healthy and loving my family— is the source of the only balm, for the cavernous hole in my daily life their absence has created. The temperate climate in Santa Barbara, has supported my lungs and my entire body. It helps me better manage my overall health. I desperately wish we lived in a world, where my health allowed me to share this version of myself with all of them. That I can’t wrecks me. They see me in small doses, on quick visits, in long phone calls, in text messages with photos. It isn’t enough and I will never make peace with the separation.

At different times in our lives, we will all come to accept that suffering is embedded in our journey. What continues to sadden me, is culturally we both dismiss and minimize suffering. Like many of you, I was raised with the lesson—no matter how bad your life is, someone else’s is worse. Which is true, your notifications on your phone and social media confirm it.

We have become conditioned to find gratitude in each exhausting trial. For years I have absolutely employed this tactic.  I will no longer tolerate both the scriptural and philosophical explanations for suffering. I will add, the WORST offenders are fellow religious minded folks, most often my fellow Christians who say, “God never gives you more than you can handle” believe me HE has, and we’ve had WORDS, big ones.

Today at 51, I’m not going to spin it… there are many of us who have had more difficulty in our lives than our peers, friends, and family.

What I can share are these two lessons.

First, I have given myself permission to accept my life is harder than many others. To take the time to work through the grief, that not much in my life has gone the way I had hoped. I also will be honest; this is a continuous work in progress.

I needed to acknowledge, in my journey I have not only had to make lemonade, but I have also had to pick the safest non-moldy lemons to use, and on a few occasions, we were out of sugar. Essentially, I was required to make it work, because frankly there were no good options.

What has made the making it work, even tolerable, is the last truth. It matters who you choose to accompany you. I shared the intimacy of my journey because the people involved matter to me. They accompanied me, they loved me when it was messy for them. My doctor stood by me in the messiest of the messy, he fought like hell to get me well. As did my therapist. They both are trained professionals who lost a bit of their objectivity to get me here. Jeff remains the most singular husband on the planet, he is an anomaly and the love of my life. He is the greatest gift I have ever been given. I also can’t write too much about him, or I’m in a puddle on the floor for days.  

The ones who had no skin in the game, these trusted, ride or die girlfriends. They are truly special; I carry these women with me in every action of my life. I miss them and will never have the words to thank them for getting me well.

To get through this journey, you must find the strongest, toughest, and most loyal people you can trust. Listen to their voices, turn to them in the moments of darkness, when you are scared, and your judgment is flawed. These are the voices you need when you can’t trust your own.

I have been privileged to be in this inner circle of trust for some. My journey has made me a beacon for others. Which makes me extraordinarily uncomfortable. I don’t see myself as unique, I made lemonade out of the least moldy lemons in my basket of life. Others do it daily, with less supports.

What I do know, is that my entire journey allows me to see the fragility of life and love. It has taught me how to fight when it feels like I have nothing left. To meet myself in the darkness and climb out, and to love others unconditionally and fully.

If you are in my circle, I love you HARD and I tell you so. The phoenix isn’t the most interesting part of me—No, it is my ease at loving so fiercely.

I developed it because I daily live with the love of so many…  

I found the light in my journey, and you will too…

As always, the Divine in me bows and honors the Divine in you—Namaste

xo - Kathryn - PilgrimageGal