I couldn’t stop smiling. We climbed the stairs from the hot metro tunnel into the humid daylight of New York City, and found ourselves tossed into the wild pulse of humanity. I’m not much of a city person in general, but I love good food and adventure, which means that NYC was a practically guaranteed eventuality. Of course part of the thrill was to travel at all after eighteen months of pandemic precautions (my mask and vaccine card continue to be close at hand), but the emotion was magnified by the year of illness-induced isolation that preceded Covid. I haven’t been well enough to take a trip with a friend in three years.
So we dove in! We dropped bags at the hotel and wriggled into an overcrowded train on our way to Chelsea Market where I ran around like a fool, delighted by the novelty, the artistry, and from somewhere, the cilantro and spice laden scent of TACOS. Those tacos were pure glory, the masa in the tortilla press was worship, and the pork rotating slowly over fire was a glistening liturgy. Thank you Lord for the beauty and variety of food.
After tacos we walked the High Line, which was magical in the golden hue of summer twilight. We sipped tea and coffee while we quietly absorbed the magic of being deep in a place, mind and heart aligned with the location of our feet. I collapsed into bed that night, fully aware of the gifts of being alive.
The next day was a whirlwind of walking and sweating and eating and laughing. Sunrise on the Brooklyn Bridge, breakfast on Clinton Street, Chinatown, Little Italy, Trinity Church, quiet tears under the leaves of the Survivor Tree, Eataly, Fifth Avenue, the Harry Potter Store (duh), and a much anticipated dinner at Union Square Cafe.
I threw up before we left the restaurant.
Before I opened my eyes the next morning, I was in pain. This is a difficult way to start any day. I felt the heaviness of another day spent “fighting through,” but wasn’t willing to forfeit our plans. We walked between brownstones for famous Brooklyn bagels, and despite the pain, I ate half of mine. (I know that it confuses people when I talk about or mention being in pain but still eat. The challenge is that if I only ate when I wasn’t in pain, I would eat very little, and a dysfunctional digestive system still wants food.)
Then it came in earnest. The breath-catching, color-draining pain. A panicked search through a downtown Target for a bathroom, deep breathing to stay conscious. And then, exhausted and still very much hurting, the anger. I was so angry that I insisted we keep going, ticking things off of our Brooklyn itinerary. I was so angry that I had the slice of pizza just to spite my own body. I was so angry that I wanted to rage at every person who wasn’t in pain, every person who didn’t have to strategize about how to avoid pain and nausea that will always come anyway.
I can’t “discipline” this away. When people question what I eat or drink or do and ask “won’t that hurt your stomach?”, I usually muster the goodness to appreciate their concern and then the energy to explain (which is complicated and takes time) or to deflect with a joke (“oh I’ll definitely pay for this” or “#worthit”). When anger is the stage of grief I’m living in, I want to shout that I’m going to be miserable anyway, so I may as well eat what I want. My dietician refers to this as self-sabotage, and it is a real side effect of real exhaustion.
All of us, at all times, are cycling through the stages of grief in at least one area of our lives. In these pandemic days, grief is everywhere, churning the waters with rapid swirls of anger, depression, bargaining, denial, acceptance, and sometimes all of the above simultaneously. I see it in the people I work with, and in my friends. Naming their sometimes erratic behavior, big feelings, and volatile moods as the natural outworking of grief helps me to stay tender. I apply the same grace to my own journey with this exhaustingly broken body.
Today, I’m grieving that travel is so difficult for me, and that the difficulty will be felt by my friends and family for the rest of my life. I am bargaining around the burdensome presence that I will have. I am denying that I need to limit my diet even more in order to live with less pain. I am angry that my twenties have felt so very arduous. I guess I’m sad about that too because that sentence made me cry. All of it, all at once: that’s why grief is so tiring and so heavy.
I left a meeting six times on Monday morning because the only hope of relief from the pain was a trip to the bathroom. I encountered employees on the trips back and forth who all wanted to know how my trip had been. One asked if I was feeling “refreshed and renewed”—it was hard for me not to laugh through gritted teeth as I clenched my fist over my spasming colon. I did not feel refreshed. I felt unfairly punished for having an adventure, and the clashing expectations of my healthy colleagues with my daily reality felt like a salt shaker emptied into the wound.
This is hard to write, and I’m sure a bit bitter to read. Maybe you’ll give me the grace of recognizing these words as grief working its way out of my heart.
On my way out of work on Monday, a friend and colleague said “I hope you feel better!” and in a rare moment of honesty, instead of choosing the token “I will!”, I said “I won’t… and that’s the hard part.” The space in that relationship to share the weight for just a moment was grace in practice. As I face the days ahead, I want to be someone who makes space for others to share their load. Grief is not exclusive to chronic illness, it is universal across all of human experience. That universality is our opportunity to carry it together, which is really the only way to carry it at all.
“Carry each other’s burdens, and in this way, you will fulfill the law of Christ” (Galatians 6:2).