This is the sixth and penultimate in a series of not-stand-alone posts about my brother Mark and his death, which occurred on Sunday, August 2, 2020 during the COVID pandemic. Long-running, self-indulgent remembering and lamenting is what’s supposed to be happening here. Almost there, almost done. This one is heavy, but I promise part 7 will lighten up]

On the night before Mark’s funeral, my mom doesn’t want to sleep alone, so she invites my daughter Jesse to sleep with her. Jesse is happy to oblige, as she also doesn’t like to sleep alone. Mom’s bed is a four-poster queen size contraption, with the mattress sitting high enough that she needs a footstool to get onto it.

In the middle of the night, at 2 or 3 am, I wake to Jesse calling out in distress. “Mom! Grandma fell out of bed!”

I rush into Mom’s bedroom and find her lying on her side on the floor next to the bed, holding her wrist and grimacing in pain. After a little investigation, I realize she needs to get to urgent care. My brother Eric has more local road knowledge than me, so he takes Mom to the emergency room. They decide that her wrist is broken and put a quick cast on her, with instructions to follow up. (At the follow up a week later, we learn that her wrist is actually shattered and surgery is required to put in a variety of pins.)

It’s a bona fide fiasco. It means we all get almost no sleep, and we’re really worried about Mom, and it’s hard for her to get dressed for the funeral because of the cast, and she’s in terrible pain. Also, Mom has declared that Jesse pushed her out of bed.

———-

Jesse used to be really good at breaking things, for all sorts of reasons. Sometimes it was tantrums, but there was also always so much distress and self-loathing, and sometimes what she broke was herself.

For a few years, she was obsessed with breaking a particular window in her bedroom. This was not a choice. She has Tourettic OCD and depression and anxiety and body dysmorphia and she’s a survivor of anorexia and oooooh… so many labels. Sometimes things just get stuck in there between her ears.

About that window. She banged on it a lot, eventually cracking it. We put packing tape on it and didn’t bother to fix or replace it. What was the point? We reasoned (and she agreed) that this would only encourage her to break the new window.

Eventually she did the window in completely. I heard a crash one afternoon and then nothing. I called up and asked if everything was okay. I heard Jesse answer from the bathroom in a suspiciously pleasant lilt.

“I’m fine.”

I raced upstairs and she was not fine. She was in the bathtub and there was blood everywhere. She had put her foot through the window; a piece of shattered glass had flayed open part of her foot. She didn’t want my help though; she was fine. I could see it in her face: she thought she had only gotten what she deserved. She fought the trip to urgent care that we insisted upon.

———–

I’m shocked by Mom’s claim, repeated as I help her dress for the funeral, that Jesse pushed her out of bed. A little while later I ask Jesse impulsively, “Did you push Little Grandma out of bed? She says you pushed her out of bed.”

Jesse looks stunned at the question, and I immediately regret asking. In my mind, it’s practically rhetorical. Of course Jesse didn’t push grandma out of bed. At worst, maybe she was snuggling. I just want confirmation. But Jesse receives it as an earnest inquiry, and as usual she assumes the worst about herself and gets tied up in knots. I can see it in her face. She loathes herself, because maybe she did. She loathes my mom for the accusation, because of course she didn’t. But she’s been accused of so many things over the years, she’s done so many bad things, she’s broken so many things, why would it not be true that she’s also broken grandma, on the night before Uncle Mark’s funeral?

———

I used to talk a lot about the broken things in Jesse. She had a compression fracture in a vertebra in kindergarten, she broke a wrist a few years later, she had long-undiagnosed Lyme disease and walking pneumonias, she has serious food allergies. These were nothing. The things that I perceived as really broken revolved around the labels, the diagnoses, the anorexia, the sensory crazies, the incredibly difficult behaviors. I pathologized her, sought cures and answers, pushed her to fix and heal and reknit.

The world didn’t make it any easier. So many people said so many mean and unhelpful things to me over the years, and how could I help but internalize it all? Never mind the ugly looks and thoughtless comments from strangers when Jesse was having a hard time in public spaces: the most well-intentioned and therefore most hurtful comments were more intimate, from family and friends. She needs boundaries. She needs to be spanked. Discipline will solve this. She needs freedom. She needs to be swaddled. Sleep training. Co-sleeping. Time. She just needs prayers. She doesn’t need meds. Meds can help. Behavior mod therapy, acceptance therapy, exposure therapy, boot camp. Try essential oils. Have you taken her off gluten? She doesn’t have enough to worry about, that’s why she has anxiety. Try massive doses of vitamin D. Or B12. Maybe E or C. Kale. Triple her antihistimines. Have you tested her for brain inflammation? She should have stopped nursing sooner. She just needs friends. Send her to me for a week, I’ll fix her. There are institutional settings for people like her. Home school. Magnesium supplements work wonders. CBD oil. Bone broth. Probiotics. Elimination diet because leaky gut. GAP diet. Massage, chiropractics, acupuncture, meditation, herbs, candles.

Nothing I did was good enough, no choice I made was good enough.

That’s the tricky bit with calling these things mental “illness” instead of disability. People think there’s a cure, a solution. We imagine an ending, as though there’s an armistice day waiting somewhere ahead, a permanent peace and healing to come. I would see all the potential and intelligence and wisdom in my daughter, and I would imagine her being crushed under the weight of mental illness we hadn’t resolved yet. But SCIENCE and WOO WOO would serve, if I could just… GET… IT… RIGHT. So we labeled and waited and begged and kept imagining something that cannot be: someone other than the person who was standing right in front of us. We crushed Jesse under the weight of our pathologizing, stigmatizing, marginalizing ableism.

Mark didn’t like to talk about what was wrong with Jesse, at least not with me. He would just say, “she’s fine.” He felt my pain as her parent; he was compassionate about our challenges. But he also wanted me to accept Jesse in all her fucked-up glory.

When Jesse was just beginning to recover from anorexia, about a year before Mark died, we made a trip to California. She loved roller coasters at the time, and she was just well enough to have some energy. So Mark took her on a special uncle-and-niece trip to Six Flags. They spent a long day on rides and returned exhausted and happy.

Mark later admitted that what Jesse ate during the 10 hours they were gone was a lemonade and a bag of Doritos. But, Mark insisted firmly, in a way that brooked no argument: “She was fine.” Then a sort of longing came over his face. He described watching Jesse stare at other teens who were there together, as they waited in lines. “I felt kinda bad for her, having to go on rides with her old uncle instead of being with kids her own age.”

I saw a mirror of Jesse’s self-doubt and self-loathing in my brother. I wish I had said to him then: no group of happy teens would have accepted Jesse the way you do. In fact, no one does that except you. She was with the only right person at Six Flags.

———

Mark’s death is brutal for Jesse, and it manifests as really strange behavior at the funeral. Little grandma’s broken wrist doesn’t help. I’m not there to witness all of it because I’ve gone ahead to the cemetery with my mom, but Anthony eventually tells my how hard it was to get Jesse out of the house and into the car to head over. While little Nick cries and takes it all in and acts pretty neurotypical, Jesse tics out and rages and forgets to put on shoes and hides in the trunk of the car at the cemetery. She misses most of the service because she won’t get out of the trunk.

Part of me is incredibly irritated. Jesse is a reliable disruptor in moments like this, utterly incapable of coping with her grief in a way the rest of us can perceive as sane. Much much later, she explains to me that the reason she didn’t get out of the trunk is because her urges were very strong and she thought tics would take over and ruin the ceremony. It’s a bitter pill: she’s made a thoughtful choice, one that hurts her and ostracizes her from an important ritual of shared grief. I don’t know what people see when they look at Jesse, but I think I know what Mark would say. He’d tell me: let it be; that’s just who she is; it doesn’t matter.

———

It’s been three years since Mark died. I’ve spent that time coping (badly) with a lot of grief, learning to navigate new caregiving responsibilities for my mom in his absence, taking on one new challenge after another with Jesse, and not really having a healthy space between my ears. I’ve believed that the deepest grief I feel about Mark’s death – sometimes unbearable – arises out of my sense that a life worth living was lost to all the broken things. When I began writing this episode (3 months ago?), I thought I’d be telling you about the ways Mark was fractured like Jesse, his unmet mental health needs turning him to a life of heart-destroying drug abuse and self-destruction. I thought it would help me work through the traumas of having a brother who lived with such hard addiction and mental health challenges, and the potential recapitulation of that journey in Jesse.

A couple months ago I hit the shrink’s office for my regular check-in. I don’t even remember what set me off, probably nothing important. I found myself talking about the spinning thoughts that addle me – wound-up and twisted-together thoughts about Mark, my mom, Jesse, the childhood traumas that make me scream when I want to be calm, the wacky automatic thoughts about hating my life and wanting to run away. I can’t possibly remember the exact order of conversation, but the gist of it was like this:

I said to my doc, sometimes I feel exactly the same kind of raw grief I felt the day Mark died, it’s like a poison I can’t get out.

Dr. G asked me gently, what was it that Mark gave you?

In great gasping sobs, I found myself saying, “Mark was the one.”

The one who what?

The one who always told me I was good enough. The one I could turn to when everything seemed wrong and I would know he wouldn’t judge me or criticize me or even give me advice. That’s the anchor I lost when Mark died.

I let it all out on the shrink’s sofa, and the next day I had a banal and unoriginal epiphany, important to me nonetheless, that all that brutal grief wasn’t for Mark. It was for me.

———–

We’re currently enrolled in a dialectical behavior therapy (DBT) adolescent program to support Jesse in working through ongoing challenges. Much of the work is for Anthony and me to do. A foundational idea in DBT is that everyone needs validation and radical acceptance, which is singing my song. But of course, it’s easy to say and hard to do. Reflecting on the things we’re learning there, I think of Mark often and I realize that he offered me validation. It was a mighty gift that I didn’t understand until after he was gone, and it was a gift I didn’t know to reciprocate.

Maybe it’s time for me to take that in-house, and maybe I need to start by growing up a little and letting Mark know I don’t need him anymore for that.

It hurts so bad to even put those words down. It feels like betrayal. But Mark isn’t here now, and he’d want me to stop the blubbering that’s going on here. So I’ll say something to him right here in simple terms, and it’ll be okay.

——–

Hey Mark. I don’t know what you are anymore. Maybe you’re just a pile of soulless ashes, or maybe your wraith is haunting someone, or maybe you’re at peace somewhere, or maybe you were reborn as a happy dog, or maybe the photons and energy and itty-bitty invisible things that made up you are finally free and spreading out through the universe, exploring. I think you’d like the last option, so that’s what I wish for you. Probably this world just wasn’t a good fit for you.

I’m realizing that you weren’t as broken as I thought, because you surely helped me stay in one piece. I’m so sorry that I always thought of you mostly as fractured. I should have spent more time telling you all the ways you were amazing. I want to remember the whole things about you, the beautiful and whimsical and funny stuff that made me look forward to every conversation with you. I want to remember your strength. After all, you made it 58 years before giving in to all the hurting you endured. It was an accomplishment.

I’ll try not to need you anymore. I’ll try to love and accept myself the way my big brother Mark did. If I can follow your lead, that’ll mean you really aren’t gone all the way, so that’s a good thing. I’ll try harder to give my kids the sort of acceptance you gave me. I think that’s what you would wish for me.

I’ll try to be whole, and that’s the best memorial I have to offer you.