A month has passed since I promised Abby I’d write an update. My first thought after our visit with her neuro team was to write about grief. Because her end of January appointment with University of Utah Neurology didn’t go the way that I’d hoped.
Chronic illness is a wilderness that extends out in every direction as far as the eye can see. Should a sufferer be fortunate enough to have a firm diagnostic picture, a well-marked pathway awaits them, usually accompanied by healthcare professionals of all stripes as guides, and backed by information guiding them through whatever rough territory might await.
Neurology is the department where hope goes to die, as Abby jokes, because so much of it is terra incognita. Neuro doctors are freehand solo climbers; the support team consists of folks who think traversing the wilds equipped only with a water bottle, flint, and a knife sounds like a good time. Figuring it out as you go is part of the thrill. Six years in neurology have taught me that there are usually more questions than answers. This might be exciting and stimulating for the researchers, but for the patients (and carers) it’s tantamount to being set loose in the desert with only a compass and told to await instructions.
I wait. A lot.
I learned a word for this feeling: liminality. Liminality is an indeterminate state between different spheres of existence. Purgatory. No Man’s Land. I am a liminal person. Not quite anything but lots of bits of many things as I try to live meaningfully without knowing what’s next. Do I have permission to plan or think or hope or dream? Or do I continue to wait until one of the doctors shouts down from their solo climb that they have an idea they want to try so proceed to the next coordinates. Every doctor’s appointment has the potential to provide another landmark to navigate toward; the opposite is also true.
Sometimes an awareness of my precarity hits like a blizzard blast, a cold shock that forces me to face exactly how lonely, how endless this liminal space feels.
You see, a consequence of Abby’s having her cerebellum pressing into her brain stem for many years has been that misfires and incorrect signals have been sent to her autonomic nervous system. A consequence of this relentless stress is autoimmune and immunological malfunctions. The best treatment for this, in her case, is intravenous immunoglobulin, or IV Ig for short. I wanted to get on with what I saw as part II by the doctors agreeing to start her on this protocol.
Abby’s neurology team wanted to wait and see how she continues to recover from her neurosurgery. No IV Ig yet.
This was when I started to cry.
The thoughtful neuroimmunology fellow kept me supplied in tissues as the tears flowed freely. I can now say from experience that face masks don’t absorb tears very well and become quite snotty.
I told everyone I was fine but I wasn’t, but a lot of being carer is shelving your distress until you have the private space to examine it more closely. My feelings originated from a place of battle fatigue: facing another protracted storm with no end in sight.
Heather, two hours after the neuro appointment
A dear friend sent me an email last week simply entitled “Hope.” His kind words cut through the frustration and anxiety I’ve dealt with lately, bringing sweetness. What first came to mind was Emily Dickinson’s classic poem (once an English major, always an English major).
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
What grabbed me this time was the second stanza:
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
As the weeks have passed by, I have been able to think about the appointment more objectively.
A few notable positives have emerged. I will not call them “the silver lining” or “the bright side” because I feel like labeling them as such oversimplifies a complex situation. That being said, these developments are worth mentioning.
Dr Melissa Cortez, Abby’s autonomic neurologist, has now been practicing long enough to have seen other patients like Abby have legitimately good results post-surgery. In her experience, it can sometimes take 1 year to 18 months to really measure how much a Chiari decompression surgery helps a dysautonomia patient. Abby’s improvements pleased her including better digestion and temperature regulation.
Abby spends at least two hours a day working on cognitive, physical and occupational therapy to retrain her brain. Her PT, OT, and SLP have measured concrete progress. New in PT is a focus on core strength. Her OT continues to focus on hand strength and dexterity. In speech/language, Abby’s sessions include auditory processing, sequencing, and executive functions (including working memory).
Abby is almost finished reading her first novel in 7 years.
Abby continues to taper off medications she has relied on to regulate things like sleep and blood pressure.
She qualified for and received the first dose of the COVID-19 vaccine.
And so we wait until the next appointment, the next guidepost, listening for the sweet song in the storm, knowing eventually it too will pass and perhaps the next time, the way beyond the liminal threshold becomes visible.