Rising Still: Beginning thoughts on caring for teens with undiagnosed illnesses and chronic pain

When I began this new blog venture (the fifth blog I’ve ever been a part of creating or co-creating), I had anticipated it growing into a space where I could capture and catalogue my musings of this stage of my own motherhood journey with my four girls. I felt the time moving along much faster than I had ever previously known it to move, even faster than it had flown by in the earlier sleep-deprived and drowning-in-diapers stage of parenting. The year prior to launching the blog was spent trying to sort through the unexpected and sudden uprooting of a life we had rebuilt for ourselves after a few wild adventures involving a short stint in Uganda, an equally short stint in California and a three year journey through a graduate program at the school I now work for part-time.

I had hoped to be more intentional about the practice and rhythm of writing. I had hoped to be more focused in my musings, to use this platform to generate or house a few new vocational projects. I had hoped to unfold my feminist leanings in how they shaped my mothering, or unfold my mothering and how it shaped my feminist leanings. I had hoped that this little writing space would generate the deep wisdom that comes from exploring one’s own life. But as is so often the case, at least in my life, things rarely workout exactly as I imagine they will.

I have roughly seven to ten drafted posts sitting and waiting on my blog dashboard. They’re patiently awaiting a revisit, edits, a conclusion perhaps. But there they sit. Left undone. Untended. Unfinished. I started to understand these abandoned blog posts and major lulls in my own writing practice as a type of resistance. It dawned on me this morning, that the resistance could be directly connected to the title of this blog – Little Women Rising. To write about my girls rising into bold and brave and brilliant young women could be a challenge these days as two of the four have been contending with complex medical issues that leave them both lying down more than rising up. Oh the irony.

I know I need to write. Resistance be damned. I need to find my way, paving one word at a time, through the shit show I feel like we are living these days. So here I am in this space I created with vocational aspirations, now realizing I need this space to sort out how we will rise together in the face of the heaping pile we stumbled into.

Let’s begin with a list of feelings.


5 Things You May Feel if Your Child is Suffering from an Undiagnosed Illness (as of yet) and/or Chronic Pain that Impacts Daily Functioning

  1. You may feel like you are legitimately going crazy. This feeling often follows awful doctor’s visits where the expert you vulnerably and desperately approach looks at you or your child and inevitably suggests stress as the culprit because they have no other known categories for your ailments, or maybe they simply hint at their suspicion of an exaggeration or paranoia. Sometimes it surfaces when your child becomes irritated with your obsessive symptom check-ins and new google informed wonderings every hour on the hour. And the feeling lurches from deep within too, because you actually know that you are going crazy. The inability to sleep past 4am without grabbing your iPhone to type one more symptom into google, the difficulty concentrating on anything else and the frequent and increasing dissociation would be enough for any therapist to diagnose you with an anxiety disorder. I know this. I was a therapist before life took a turn. But now, my view from the proverbial (and metaphorical) couch, is that perhaps going a little crazy is a normal response to a crazy experience. Eventually, your craziness may lead you to some answers or someone who seems to hear you and believe you and your child. Make sure you take as many deep breaths in those moments as is humanly possible.
  2. Panic, denial, grief, and numbness may all take turns. Panic is always just a new symptom or blood test or scan or pain episode away. It’s the panic of discovering something life threatening. But then it’s the panic that you’ll never figure out what’s going on or how to usher relief for your child. And then denial often swoops in convincing you that you’re blowing this way out of proportion – that none of this is as big of a deal as you fear it could be. Denial can even convince you in moments that this is all psychosomatic and it’s of your own doing – that your personal brand of crazy is creating this response in the body of your child. Grief is the hardest for me to sit with at this point. It’s the grief over what has been lost already – the time, resources, energy, opportunities for play and delight, days upon days of struggle. But it’s also the grief over what losses may be set before you still. It’s hard to sit in the grief for very long before an undoing occurs. I’ll explain the undoings a bit further down the screen. Numbness used to feel like the safest place to situate myself but too much numbness starts to lurk a little too close to the edge of deadness. Panic, denial, grief and numbness keep taking turns unless they are arrested by something even more powerful or substantial or true. A sunset, the playful demands of a four year old, attending a lecture with Dr. Cornel West and a room full of people looking to do better by one another have all been powerful enough interruptions in the recent weeks.
  3. You may oscillate between feeling powerless and having delusions of grandeur. It’s when I feel confounded on what to do next that I typically find myself crying on the floor in my closet, or pounding the steering wheel of my car as I sit parked in the privacy of my garage. Bouncing around from one doctor to another, one specialist or clinic to another, listing the weeks (or years) of the progression of symptoms and all that has been either confirmed or ruled out over and over again is beyond exhausting. And perpetually finding ourselves at the feet and mercy of a fractured medical system that rarely exhibits the continuity of care necessary for more complex cases can further deplete an already exasperated family. I combat the sense of powerlessness in the process with some significant overcompensating by way of the above mentioned incessant google searches, but I have also expanded my pursuit of answers to scouring the research and studies found in the scholarly journals I can access. These searches are propelled by the notion that if I can just find the missing piece to the puzzle or if we can just get to the right expert then somehow I can remedy everything. These delusions of grandeur – that I can somehow fix what is broken for (and within) my child – seem connected to some primal and instinctual maternal wiring, but it simultaneously exemplifies a resistance to the spiritual reality and developmental milestone of truth that my teens and I must each accept – I am not God or Goddess. I do have agency, so I am not powerless. But beyond my own agency, I must contend with the limitations of a world that functions according to natural realities and imperfect human systems. There is so much nuance and tension to be found and explored between this psychological, philosophical and spiritual dichotomy.
  4. Loneliness may be difficult to combat for both you and your child. I’ve noticed something both heartwarming and heartbreaking during our visits to various clinics at Seattle Children’s Hospital over the past year. Perfect strangers often strike up conversations in these settings. You don’t see that in many other places here in the midst of the cultural phenomenon of the Seattle freeze. The interactions I have been privileged enough to witness (or close enough to eavesdrop upon) are typically initiated by one parent of a patient asking another parent of a patient about what clinic they are visiting that day. It’s a connecting point. We are all standing in the same lines, sitting in the same waiting rooms, sorting out how to best care for our child and get the answers we need. Within the walls of the facility, I don’t feel so alone. I see the exhaustion in the faces of the other caregivers too. There are plenty of parents and children that are patients in far worse condition than we currently find ourselves experiencing. Regardless of the spectrum of need and desperation, we all know at least a little something about each other’s worlds. Outside of those walls, it feels overwhelmingly isolating at times. Chronic illness/pain is often an invisible issue. So there could be (and likely are) others walking around my small world facing similar battles, similar emotional and physical exhaustion, but I wouldn’t know it just by looking at them. And they wouldn’t know it by looking at us. I sometimes wish we could all walk around the world with chalkboard signs hanging from our necks that reflect our current sufferings – whether physical or emotional. I am certain we would all have at least one thing worthy of displaying. Maybe then we would all be a lot gentler and kinder to one another as we move through the normal operations of everyday life.
  5. You may encounter opportunities for the deep psychological work of undoing internalized messages. It might be hard to access these deeper levels of the self when you’re operating out of survival mode and navigating life one step or moment or task at a time. But there may be moments where it feels like your own tectonic plates shift and open up a crevice that allows some kind of profound and transformational insight to fall into the core of your being. Mostly these experiences are remarkably fleeting. A few weeks back I dragged myself away from all research devices and committed to walking as long as I needed to in order to feel like a whole body of a person, not just an obsessively thinking head of a human. The thinking didn’t necessarily stop, but the walking generated a more embodied presence than I had felt in several weeks. I could think a bit, and then cry for a bit, and then yell at the Divine for a bit too. Head, heart, and spirit. I guess that’s what was necessary for me to begin to hear the messages that were in need of deconstruction. “This isn’t supposed to happen now. Why is this happening now? What am I supposed to be learning in all of this? Are we being punished? Are we cursed? WTF???” They were rather revealing questions of my heart and soul. I’m learning to unpack what they each reveal about the messages I’ve internalized. This isn’t supposed to happen now. Interesting that I’ve bought into the myth of our culture that life is meant to play out a certain way…if you’re a decent human, if you work hard, if you play by the rules. I wonder if my privilege has prevented me from accepting that neither suffering nor struggle bow down to the notion that children and teens shouldn’t have to face hardship (especially if college and dreams of playing soccer at that level are on the horizon). The remaining questions of why and lessons to be learned and whether a curse is at play all reveal, at least in part, my own susceptibility to an egocentric state of mind. Why not happen to me…to us? That’s the countering voice I heard that day in the middle of the woods. It wasn’t a response that minimized my own experience of suffering, but it was a truth that reminded me that suffering and hardship will greet us all at some point(s) in our journey. It’s simply part of the human experience. Who am I to think that I should somehow not experience hardship when my news feed is filled daily with tragedy after tragedy of greater or lesser degrees? This is not to say there isn’t meaning to be made out of these experiences. I’m just learning that the meaning may have more to do with increasing my capacity for empathy and understanding, not getting stuck looking inward alone. These are the great undoings that can happen when our own little worlds quake and crack.

 

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