This week in the world of gastroparesis and dysautonomia (with a fancy question mark around it), I have re-adjusted to the inconveniences and funny moments that come with having a nasal feeding tube with you everywhere. I look sicker to outsiders with it, but feel a hell of a lot better than when living on low nutrient low calorie high vomiting diets without it. The magic of bypassing my stomach without another rough surgical j tube trial feels more than impressive.
All of the awkwardness and sudden influx of comments about praying for my soul is worth it to once again come home to the true me for a while after this long and lonely trip of severe chronic illness.
So, as I emerge from severe to moderate now to now mild malnutrition. I’m much like a bear leaving a very painful and poorly managed hibernation. I’m applying for all sorts of full time and part time work (with little luck so far but a lot of drive) and trying to adapt the hobbies and tasks I love to suit my more finicky body and overly-ambitious brain. It's a creative venture not unlike event planning or collaging.
On Thursday, amidst all this, I abruptly decided, “this health stuff can’t keep me out of the woods anymore”
One more waiting room with HGTV blaring or everlasting zoom call and I'm going to pull a Ralph Waldo Emerson.
Really, an impulsive hike is harm reduction if you frame it right :)
I down a cookie and a zofran (a weird and not super effective way to add calories to my not approved exercise plan— I’m still struggling to get a full day of food in even with the tube due to my intestines calling things off at a pretty low rate/drip of formula)
Fueled by simple carbohydrates and big pharma, my Gastroparesis Barbie spirit kicks in and the sketchers hit the sidewalk. Wrapped in medical backpack straps, and twisted up in feed tubing and Babkas ever spinning leash, I'm ready.
(Before I move on: How does everyone's doodle here in this fancy suburb always make my dog look like such a maniac. I’m getting hog tied in the street while she chases a lead and “McHarriet” walks at her owners side without even looking at us. It's dystopian. Or Babka's just mayhem)
We dip down old streets of long old house and beautiful greying old women in cafe windows before I decide we need to bite the bullet and finally hike into the cemetery. The path is wooded, steep, winds up an extraordinary hillside, and is very old. The place is listed on registries of haunted spots around the region. The cast iron gates warn in bold letters that they close at 5 and only reopen at dawn. It is 3:12. This is the opening of what is every horror movies disabled hippy hopeful woman's last bad idea. It would kind of be really ironic after surviving in so many harsh places to die in a.... scrap that thought.
I joke often that my life story from 14-24 is just a Lifetime network "made for tv" melodrama writer's side project. Except he was sick of his predictable job so he just kept adding crises and moments of hilarious chaos to the plot to see how many he can get away with before the project is reassigned.
This time there is no writer to blame. I’m picking this chaos.
The walk from my house to the cemetery was a lot on my joints and energy, we didn’t get very far up the deep path. We did not get to the centuries of graves, but the quiet solemn energy of their presence trickled down the hill, and oddly perhaps- felt more and more welcoming around each curve of the old road we scaled.
I think about the sign that warns not to stay past 5. It’s still not 4, and I’ve jumped fences before, so we wander on. I feel invisible to the world in the way one longs for, not in the way one has to be to survive sometimes.
I look down on the town below and see the closest building- a hospital where I spent my first ER visit at 15 after a horrible, horrible night. Walking higher above the walls of those rooms feels safer than I ever thought I ever could feel again back in those days.
I love how society and us younger folks are reworking death and funerals and illness standards to fit our needs and end stigmas. It is so common now to see brief celebrations of life, cremations and scatterings, even fully online memorials. We are brave, but I sometimes work we also wash the less clean realities of death away.
I don't want a grave site as my "resting place," when I go. I want to rest in the people and places and art I loved, but more cremation means less tree lined cemeteries in our neighborhoods near our parks and preschools and jobs. It is okay to have these reminders visible that with enough time, all of us will make longer visits to those we've loved and lost.
More hospitals and rehab and nursing facilities means less home hospice family shifts and less general witness to the sacred slowness of grief for and from those being taken from a life they may or may not feel ready to let go of.
More fast paced news cycles and social media feeds means less apple pies and living room after-the-funeral just-us vigils and more liking of obituaries and "thoughts and prayers."
None of it is entirely bad, but all of it feels fast. Death feels too normal when it shouldn't and too stigmatized when it is inevitable. Explaining it feels lonely and oddly risky. Walking around it feels right.
I did not see any birds in these thin, defrosting woods, but I didn't seek them out either. I am in their home. An occasional call or chirp reminds me of this gently and brings a smile to my face and a perk to the little dog's attuned ears.
Mourning doves, to me, capture the mysticism of joy in grief. They sing the beautiful, solemn, calming part of the now sad story. They sing deep grief but people sop to listen with childlike curiosity. Reflecting on the people I've lost is a similar song:
How lucky was I to know her? How gut wrenching to never see her again. Did her illness feel like this one? How I want to call that number. Wouldn't she laugh so hard at this video? I'm so glad she was mine. I'm so glad she's still out there. I wish she was right here. Are you right here?
Since I was young, the songs and waddles of these doves have shown up in all of my hardest losses- lost people, final stops at beloved places, grieving days of finished hopes.
As I came through the gates of the cemetery, on my way back down, I had an odd thought:
“could this life be enough?”
The weight of not being who I wanted to be by now in my 20s
The idea of maybe not ever having some of the certainties or physical comfort I once had back
The envy that once upon a time I never noticed each part of my abdomen and body flood over me a lot.
I grieve the sense that my hard work will always go rewarded with enough pushing and trying.
I grieve the vision that there are bad times that end and good times that start and they won’t always be muddling together forever.
I grieve that my grandmother and aunt and so many friends have felt this same grief of intense but long illness and that I will never be able to go back and tell them I understand now.
About once a day, usually around 4, our old hour, i get this weird panic that “I haven’t called aunt Terry this week” and then pause
10 years is becoming so long. I still panic when I think she might feel abandoned. I know now from somewhere within that she doesn’t. That she never will. That she is home.
On the silent, wooded, oddly warm, creepy path to the graves, it occurs to me that they are centuries of old friends and mothers and children and servants and leaders. I know they aren’t abandoned. They aren’t quite here-- Here is just rocks and rich soil and deep under some bones that maybe look like mine or maybe just like any bones. These are not much to leave behind, but their love and loss and loathing and deep deep longing is here too. And the love that they missed for years has welcomed them home. It's all so simple, but on an empty hillside road with quiet birds and a blissful dog, it feels so real.
I am not in a “top haunted place,” I am a guest in a bustling home.
This life will get worse. I’m in a period of hope and energy and function while I have the tube, but as my bleeding sinuses handle it poorly and the cardiology and neurology questions grow deep and the waitlists grow long, I have more and more moments where I think about what my limits are, and sometimes worse- what they might be down the road.
When will the day come that I can’t find enough meaning and the strength for another new medication trial or diagnostic testing or hard fought nutritional rebound again? How many tremors would it take to steal away my love of art? How many exercise intolerance and low heart rate days would it take to send me down this this new and beloved path for an unknowing last time? If I can’t find a job without a car, how will I find one that would work with me in the months after first being without much of my intestine?
None of this is for real. None of it is soon, I hope, but at the core of it all, at the core of this year is this fact:
I’m not sure yet.
But if it all stays where it is now: a warm winter day on a balding hillside over a nervous town with an odd sense of belonging in a creepy graveyard after a hike that just a month ago I never thought I’d be able to take 1/4 of— it’s a good life.
I’ve had to say that “it’s all good” a lot this year to dodge awkward worry from others.
But in this moment- it's all good. Truly. Deeply.
I got back to the town and began the walk to the tunnel that bridges this whimsical income bracket to my moth ball smelling but cozy little apartment.
As I round the corner past the hospital, from on that cemetery hillside above, I heard a mourning dove. I didn’t recognize it for a moment, and reached for my aching wrists almost instinctually, where two of them sit in tattoo ink.
A moment late the second call comes.
A sweet quick text from those I’ve lost, who also once lost loved ones, a gentle recognition and reward for hauling the weight of this grief with the joy of this life.
And a two part call, from birds that grieve, but always together. Always in pairs.
