Dear Sister

The We Can Do Hard Things podcast published an episode during which one of the hosts announced her Breast Cancer diagnosis. So much of the discussion intersected with my experiences, I felt compelled to write it all down…

Dear Sister,

I am an avid Pod Squader and quite certain you and I are sisters from another mister! I just listened to Episode 309 and the last 18 months of my life replayed as you all discussed. You, Glennon and Abby posed many questions that made me want to bounce up and down in my seat with my hand raised, urgently yelling, “I know! I know! I know!”  But of course, I don’t know… You all are ladies talking in my earholes for two hours a week, while it feels very intimate to me, I have to imagine, obscure to you. So instead, inspired by you, I write this to serve as the Captain’s Log of where I’ve been for myself, my kids and anyone else who may be on or witness to a similar journey.

Last year, I was diagnosed with Granulomatosis with Polyangiitis (GPA). It is a rare, 3 in 100,000, autoimmune condition.  Prognosis without treatment is 100% fatal in the first two years, most of those occurring in the first 5 months, the length of time it took for me to obtain a diagnosis.  The diagnosis was after a childhood filled with doctors and neurosurgeries for more uncommon chronic conditions, syringomyelia and Chiari malformation, currently thought to have a prevalence of about 1 in ~3,000.  GPA treatment overlapped with my 11-year old’s diagnosis of Ulcerative Colitis, for which remission remains elusive.  Suffice to say, I’ve been around the medical care block a few times.

Oddly enough, during the last 18 months, I found myself deeply grateful for the lifelong experience of chronic illness, as difficult as it has been.  I am clear on how my relationship to the shit show that is my medical life controls my experience of it. I did not arrive here out of virtue so much as necessity. I have traveled down all of the traditionally expected and prescribed roads, more than once, only to find myself depleted, burned out and disgusted with myself and the world.

The night my body fully descending into GPA, before we were anywhere near even the scent of diagnosis, I had an indelible moment of clarity.

I am going down and going down hard. This is will not be quick and it will not be easy. My body will not be available to me. I will need to parent from the horizontal position. The only way I can show up for my family is to keep my soul alive.

During that time, all of my sinuses were extremely swollen, many swollen shut. I was in excruciating pain, could not even wear my high-indexed glasses, effectively rendering me blind. Luckily, I have many tools to manage pain, physical and emotional. Similar to Chloe Cooper Jones’ “neutral room” and enhanced with Phil Stutz’s Reversal of Desire and Nan Wise’s “peak and release” model.  I believe being unable to see combined with mortal imperative, allowed me to access these tools in a way I hadn’t before.

Closing my eyes, I immediately feel the pain accentuate, the panic bubbling in my throat and my body stiffening in an effort to resist. To protect. But I know now that any attempt at resistance or protection is not only ineffective but is also a self-built cage.

Instead, I focus on relaxing every part of my body, continually scanning for braced joints. I slow and expand my breath.  And yes, oh yes, does the pain explode with the heat of a thousand suns. But then, peace, calm.  I am in the peaceful eye of the storm, with the winds of pain whipping around.  But in the center, I can feel the warmth of every soul who has suffered and survived.

I focus on expanding this eye, breathing, scanning, expanding. When I get kicked out of the center, I start all over again.

“They” say that “what fires together, wires together.” This experience and practice built a strong, firm knowing, “I have got this.” Over and over experiencing the pain to its fullest, reliably surviving and finding freedom on the other side, gave me the embodied knowledge that there is nothing I haven’t got. There is nothing, not even death, that I cannot survive.

Two months into the diagnosis process, the GPA specific antibody was identified, but without diagnosis, I was directed to an immunologist who was booking two months out.  The second he entered into the examining room, he relayed that I was sent to the wrong specialist.  I needed a rheumatologist, not an immunologist. And good luck getting an appointment. After an intense steering wheel beatdown meltdown, I quickly ascertained that local rheumatologists were booking six months out, which was better than the “not accepting new patients” in the next closest metropolitan area. But again, cool clarity came.  I was going to have to pull off a miracle.

Phil Stutz discusses an idea that he refers to as the Singularity of Oneness, referring to the way that everything in the universe is connected. He describes it as a lattice or a matrix with horizontal and vertical lines that intersect. Each intersection represents a need. It is these needs that act as the glue that hold the universe together. Being a person that feels like she’s selling her soul every time she asks for help, this idea was instantly appealing in my moment of deep need.

I begin to imagine an endless black space, much like in Stranger Things when Eleven uses her telepathic powers to enter the void. I feel my need deeply, not in words but in sensation. 

A glowing light appears and grows at my feet. I crouch down, placing a hand on the glow. I feel the warmth, the pulse, the rhythm of every soul who has experienced this need, medical care where there is none, and I say, “I need your help.”

Suddenly figures begin to appear.  When I am struggling to sense their presence, I call for all mothers of all time. Because, really, who has felt and cared for more pain and need than mothers? I call up my ancestors. I call up every person who has cared for me. And I say, “I need your help.”  Then I stay. I stay in this space until I can feel their faith, their peace.

And then, I go to work.

I called every rheumatologist in Buffalo, NY, and many in nearby Rochester. I kept notes. I asked every Tom, Dick and Harry I thought could help. And I called again. And again. And again. I scored plenty of appointments 4 months out. I managed to get one appointment with a physician assistant 1 month out. As that appointment neared, I began getting automated text messages from an office that had been jerking me around, oscillating between “Send us your referral and we’ll schedule your appointment” to “I don’t know who told you that, we’re not taking new patients.”  

At first, I thought the texts were phishing messages, but they were persistent. I finally closed my eyes dared to click the link.  Somehow an appointment was scheduled for me that very week.  In short order, I had gone from no access to care to 2 doctor’s appointments in the same week.  The week that also happened to be my late mother-in-law, Donna’s, birthday.  It would not the last time Donna made an appearance.

Just in the last few weeks, my daughter experienced a sudden and severe Ulcerative Colitis scare, petrified to even go to school due to the urgency of her symptoms.  And the insurance… oh the fucking. insurance… was telling the doctor that she could not get treatment for four more weeks.

Again, using all of my cunning, drawing on all of the power of the unseen, I spent days on the phone turning the tide in our favor, picking up co-conspirators along the way. The 4-week delay turned into a 4-day delay. (TBD if the insurance company railroads me when the bill hits their desk.)  Mere days prior to this episode, I had met a mom of a daughter with Chiari, to offer my retrospective insight. During that meeting, she ordered a cup full of ice and a Coke. I have only met one other person with that order… Donna.

After I had “won,” and my daughter received the treatment at the local Children’s Hospital, I woke up for 10 straight days feeling like I had been in a physical fight. Like the Matrix, holy hell, did my mind make it real.  I am grateful for Dr. Christine Blasey Ford’s description of the period immediately following her testimony.  If I was going crazy, I am at least in good company.

I have used this strategy many times over the last 18 months, and it always seems to “work.” Not necessarily in the ways I expect, but I always find the help I need.  The process is not solely self-focused. It is also grounded in Dick Schwartz’s and Becky Kennedy’s insistence that there are “No Bad Parts” and we are all “Good Inside.”

Interacting with the American medical system is an intensely violent experience. I never wonder why people refuse to peruse medical care… there is a price to pay for health and it is not insignificant. The vast majority of the people I interact with in this system are completely dehumanizing because, in my mind, they have been dehumanized themselves. They need to just survive and make their living. The only way they can do so, by their estimation, is by shutting off their humanity. It’s what I used to do before an epic burnout, and that I can have compassion for.

Before nearly every interaction, I prepare myself to embody Tinker Bell, clapping their little hearts back alive. I am intent on these people feeling loved and cared and honored by me in our interactions. I come to them, hat in hand, cooing,  

We are connected. And now, you have the power to help me, and I love you for it. Please, let’s bob and weave through this adventure together.

I have to say, there is nothing that fuels my life force more than experiencing a soul moving from dead misery to empowered action.  Giddiness when the action is in my favor. And boy, is that a well I get to go back to constantly. This positioning to the gatekeepers allows them to see my or my daughter’s name as more than a pesky line item. Instead of an inanimate object, they sense a person. A human. A daughter, wife, sister. They feel a sense of love and realness when our names cross their desks.

Once that week of 2 doctor appointments arrived, I received and confirmed the official GPA diagnosis and began treatment with oral medications. Three months later, the date we feared would be my first contact with a rheumatologist, it was determined that I would need to move to the next phase of treatment involving a series of biologic infusions.  While the treatment is not chemo, it looks and feels like chemo in the ways that media presents it.

After the initial panic and shut down, I began to experience a period of cool calm.  I thought I was dissociated and numb.  My creative impulses completely disappeared. Thoughts beyond the next two months disappeared. I spent my days laser focused on preparing myself and family for what felt synonymous to cancer treatment.

In retrospect however, I realize that I was not at all numb or disassociated or “not processing my feelings.” I hadn’t even lost my creative impulses. It was the opening of Jon Baptist’s documentary that revealed to me,

Oh no, it wasn’t that you lost all connection.  You were in full, uninterrupted connection. You were completely attuned inside and out. All of your parts understood the assignment.  You engaged in survival as a divine act of creativity.

All of this, plus eleven years of motherhood, plus nearly forty years of life has made my heart and soul quite porous. I feel EVERYTHING. When a baby cries in the grocery store, it takes every. ounce. of self. control. to not sprint through the store, leaping over displays to SAVE MY BABY!

Even as I remind myself, “This is not your daughter or sister or friend,” my throat tightens and tears flow when you describe Tish singing “We Can Do Hard Things”, even when it feels like an ill-fitting suit, because she knows her mother’s words in her voice instantly cracks open millions of hearts.  (Arguably backwards and forwards through the generations.)

Susan Cain’s Bittersweet was the vessel that caught my Self perpetually oozing out of me. This hypersensitivity that I have spent a lifetime tamping down, suddenly had a superhero framing.  In Bittersweet, Susan refers to an experience of a funeral. It was a brief moment in her writing that has stuck in my craw ever since, bringing to the forefront vivid memories of the family funerals I have attended.

Once the incense has ribboned around the coffin and through us with an odd saccharine comfort, my cousin Pat shatters our stoic Irish family with a rich rendition of Danny Boy reverberating off the cathedral walls. Despite the reluctant tears that always flow, it constantly comes to mind ever since reading Bittersweet and once again at the mention of your dear late friend Wendy.

I frequently wonder why my family seems so drawn to the apparent self-flagellation of “Danny Boy,” or why my friends and I excitedly cozied up only to sob through the newest episode of This is Us.   Why, in that moment of raw emotion, I felt ripped open but perpetually dove in for more. Later, I was shocked to experience the same emotion when I encountered the Rocky Mountains for the first time.  

Through the last 18 months, it occurred to me, maybe these rituals and experiences are the door to the thin space. Where the here and now blends with the other world. The one we can’t see or touch but sense and know. The plane we exist on before and after birth and death. Maybe my cousin’s vulnerability in belting the song of our heritage, in the building of our inherited faith, forces or allows the bleeding together of our physical bodies with those who have moved on or have yet to join.   For at least 3 minutes, all that came before, all that are here, all that will be, announce “This is us.” I wonder, when I am imagining touching the lattice of oneness, have I created a reliable door for myself?

Maybe you have only cried when your experience overlaps with Wendy’s because in that moment, you are her and she is you. In that moment, your pain and strength and knowing are one. Maybe it is an experience of painful awe, an unearthing of a shard of divinity.

I always get nervous when I start hearing myself getting all “woo-woo.” As a recovering Catholic (sorry, Grandma), this all feels a bit dangerous. The Secret’s version of manifesting always felt like snake oil to me, and I dance dangerously close to asserting that I can reliably “manifest.” Ultimately, while navigating a deadly disease as a mother, I just decided, “If it’s keeping my soul alive, who gives a shit?” But I recently heard James Doty give a scientific explanation of why these strategies may work.

With my meditations, I am wiring in an intention into my nonconscious. Eliciting physical sensations, elevating interdependence, and pairing the intention with humanity, all help to create a salient message and pathway from my conscious to my non-conscious. Then my non-conscious sets about the task of searching and flagging opportunities to advance that intention.

This is similar to when you are in a noisy room full of people, but you still turn your head when your name is called. We can discern our name from the rest of the noise because it is salient on a nonconscious level.  It’s not about magic or getting whatever I want. It’s about integrating an intention into every level of my brain, body, and soul, engaging every part to work in sync.

All of this is still impossible, from beginning to end.  The road I take will not be the road you take, will not be the road that she takes. But you have and continue to string up twinkle lights along the way, while inspiring others to do the same. Our sons and daughters will be gifted more sight, and they will create more light.

No one can do it, but then you expand.

You think you can’t do it, but you do it anyway.

That’s being a mother.

-Lessons in Chemistry

May we all keep moving forward, hand in hand.

Love, Laura