18 years later
On the death of a beloved parent, and moving forward after a great loss.
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Every year on Halloween night, my sleep is trash. I wake countless times throughout the dark hours, and I’m a mess the whole day following; often not realizing what the day represents until I have a full-on breakdown in the evening. Then, it dawns on me.
In years past, my brain would try to identify why I couldn’t sleep, as if it were any-old rough night: Oh, I had a piece of the kids' Halloween chocolate—that’s why I can’t sleep.
Anything apart from what it really is.
This Halloween night, my routine was thrown off after taking the kids out with friends and their kiddos. We also ate dinner later than usual, and I forgot to take my nighttime vitamins (which includes a sleep aid) until 10PM; almost two hours later than normal. I considered that it was too much stimulation on top of everything: Rowdy kids and a late-ish night out together, navigating through a sea of people all doing the same thing we were. And maybe that all did factor.
But none of it fully explained why I kept waking all throughout the night.
It didn’t register until I was readying the next morning:
Although it's been 18 years of this annual, mental rollercoaster, I’ve never slept well on the eve of my mother’s passing.
For years, I told myself she was gone already, three days before her body got the memo. But that didn’t help settle my mind.
My body has never let me forget that night, in-and-out of consciousness, yet awoken by my father bursting in, panicked. “Sara, Sara!” He shook me out of my stupor. “She’s gone, Sara.” Sobbing, “She died at twelve-o-one.”
My dad only ever cried (in front of us) about Mom.
Dissociation firmly in place, I laid there. Numb. My consciousness floating above my blanket-tucked body; the emotions too much to bear.
I think I knew, going to bed that night 18 years ago, that it was the end. She had a do-not-resuscitate (DNR) order1 since she was diagnosed with inoperable lung cancer three and a half years earlier. She died and came back to life on the helipad after getting a medevac back to Moffitt Cancer Center in Tampa, Florida from a trip we took to Kentucky.
It took three days of no nourishment and no life support for her body to finally let go. A later-learned gift to those whose consciousness may still reside in its physical shell.
I’ve heard there’s a euphoric state before death for those at their end-of-life stage who opt to not or cannot eat or drink any longer.234 If it’s anything like when my appendix seeped for a week, when I hadn’t eaten or drank for the same amount of time as my mother, then indeed, it’s a gift. No pain, no suffering. Just the brain creating an oasis to escape to as death lies in wait.
Months before her cancer diagnosis, something jolted me out of my mental refuge. I woke, covered in sweat.
My oversized T-shirt clinging to me, I finally gained enough energy after a week in bed to roll myself off the side and onto the floor. I felt too weak to stand up, so I crawled; my limbs trembling beneath me. I hauled myself onto the couch in the sitting room and just laid there, staring up at the popcorn ceiling as the clung-on dust bits began to spin.
Eventually, my grandmother saw me on her way toward her bedroom from the living room. She said something like, “Oh! You’re finally up and around again.” She noted how pale my normally pink complexion appeared. She touched my head, damp but “like ice,” she’d said.
Dragging myself out and my grandmother noticing me may be the only reason I’m here to write this today. The surgeon who performed my appendectomy said if we’d waited much longer, I may have died from sepsis.
I pictured my mom doing the same thing, inserting her into my experience. Waking from her coma, pressing her nurse’s button but refusing to wait. She’d lower herself from the bed carefully—she was so frail and small, seemingly aged by the fight with cancer.
She’d crawl out to the nurses’ station, and she’d make them see her. They’d give her water and food, and she would feel better. Like her body beginning the process of dying throttled her cells into action. They’d fight the cancer, and she’d finally win with her life in tact.
But that didn’t happen. It was just something I saw in my mind’s eye each day of her coma, no matter how convincingly optimistic it was.
Except that Halloween night.
When I couldn’t sleep that night after our late visit with her unconscious body, I spoke to her, transmitting the words from my brain as if trying to communicate telepathically. It’s okay, Mom. We’re going to be okay. I’ll help Dad, Me-me, and Tommy. I’ll be there for Aunt Betsey, too. We’ll be all right. I promise. I love you. You can rest now. But after I consciously tried to sever some link I visualized with her, I thought, I can’t take this anymore, and cried myself to sleep.
It was three and a half years of worrying, rarely able to sleep, stressed that every morning I’d wake to her dead in her Hospice-placed hospital bed in the living room. Three and a half years of not wanting to go to school because I was afraid I’d miss her; worried I didn’t tell her I loved her enough, and that she would die alone.
I don’t blame myself for the timing of her death, but I won’t lie and say it wasn’t eerie. I fell asleep almost instantly after the hard cry on her last night. And awoke, what felt like moments later to the news, unable to fully process through a mental haze.
After my dad left my bedroom, frantic, bawling; moving onto my brother or my grandmother, I stared up at the popcorn ceiling, playing tug-of-war with my dissociated consciousness.
I pictured her in front of the screen door in her little yellow terrycloth, strapless onesie she wore on the weekends while cleaning. No bra, as she preferred, with the shorts riding up her round butt. She was full again, not well, but before the cancer gobbled her up. She had that bright smile on her face that I missed, easy to focus on, even with her oversized prescription glasses sliding to the tip of her perfect nose. Her dyed-blonde hair was pulled back in a tiny ponytail, frizzy baby hairs spilling out all over. She looked back at me, turning her smile into a grin and a wink, and she waved goodbye. Then, she opened the door and walked out.
I haven’t been able to visualize her so clearly since.
I slept late that morning. The house was quiet, absent the normal TV-in-every-room warring with each other. I could smell my grandmother’s burnt, recycled coffee, and someone’s toast filling the air—my mom’s go-to snack.
But my mind goes blank after that.
Every year around this time, I’ve written about this, but never released the words. Even through all my revelations, I wonder if carving my life open and sharing was never actually for others. I told myself it was, I’d say it was, but I’m unsure at this moment.
Several times throughout this journey, I’ve shared that writing is how I process things. That was always the first thought that came to mind. Honest, even though my conscience seemed to want to hide it.
I can express anger, frustration, and sometimes mental pain through the visual arts. I can control my energy level, and manipulate my emotions through listening to music and singing. But I’m not processing them. I’m emoting. I’m sharing, but not growing.
Expressing myself isn’t enough. Writing things out helps me process, and talking about the things I’ve written sets me free.
But, my body never lets me forget, even when I feel like I can finally move forward.
In most lovely moments with my kids, I think, I wish my mom were here, or She’s missed all of this. The latter being especially true during major milestone moments, like getting to meet Brian, getting married, and having each of my children.
All the times I wanted to call her, but if I did, a stranger would answer.
All the moments I needed her with me, but she couldn’t be there.
Most times when I kiss my husband and I feel safe and warm and loved, I wonder if my dad gave my mom that same feeling. I hold my kids, and I wonder if that blanket of love my mind drapes around them was an experience she had when she’d hug my brother and me.
I remember her coming home late from work, after my brother and I were already in bed. Sometimes she’d climb into mine and snuggle. She’d touch my face, her fingers and nails yellowed from cigarettes; their odor clinging to them, and her hair, and her clothes. But it didn’t matter because she made me feel loved.
And even though she didn’t have to go to work until nine, she’d leave before my brother and I got up for school. Still, she found a way to squeeze in just enough time with us to be the parent I’d turn to when my social mask would falter. She wouldn’t get home until sometimes nine in the evening or later, well after my brother and I were sent to bed. Still, she always found a way to make me feel important to her.
This year hit me almost as hard as the early anniversaries of her death had.
As of this year, she’s been gone for half my lifetime.
It’s hard to believe. It feels like my life only just started after she died. The life before that feels like a distorted, often dystopian fairy tale I’m not quite sure if it was all in my head or if it actually happened.5
I hugged my kids tighter this week. I kissed Brian more. I didn’t take simple risks (thanks to Brian, too), like taking the stairs with a connective tissue disorder,6 even though I was embarrassed about being a large-yet-mobile woman, choosing an elevator to go up or down a single floor.
I gave myself time this week.
I paced myself.
I asked for accommodations when I needed them.
Although she smoked cigarettes since she was a young teenager, I don’t think any of us thought she wouldn’t make it to her 50th birthday. But, unlike my mother, I plan to make it to and past mine. I plan to meet the loves of my kids’ lives if that’s something that will matter to them in adulthood. And be at their weddings if they decide to get married, or at their sides during childbirth if they choose to have children. (If they want me to be that close, of course.)
It was a tough week, but one of survival. We live on, always thinking of her fondly. We carry her with us, even when unconscious of it.
I’m not a religious person or one of “faith” in the biblical sense, and I don’t know and sometimes wonder if “souls” are even real. But I appreciate the idea that the people we love and care about can live on through us. It’s fuel, powering many days when I experience significant pain, or when I’m in a flare that my body may be better served by resting.
I may not be the best mom and spouse or person, but I’m doing my best, just like I’m sure my mom did too.
She loved me. She was loved. I made sure she knew every day that she was, just like I make sure my family knows every day that I love them.
Every day is a fucking gift.
And, next Halloween, I’ll remind myself of this when I can’t sleep.
Because at least if my brain doesn’t remember, I know my body never forgets.
This was a hard essay to write, that’s for sure.
I got through it with mostly dry eyes, until it hit me that this year officially marked that half of my life was spent without my mother.
Then came the editing process….
For years, I coached myself that there are people worse-off than me because I didn’t think I had the right to be sad or angry or to “complain.” That I should never feel sorry for myself. That, when I’m unhappy or hurt or in pain or whatever-it-may-be, that someone in the world doesn’t have what I do or has it worse. Someone out there isn’t as lucky as I am. Someone out there always has it worse than me.
But that’s bullshit. There’s a difference between self-pity, and struggle, and grief. Comparison helps no one. Each person’s experience of life and love and loss are unique to them. And it’s big. And it’s important.
Your experience is important. What you feel is significant. You’re not over-exaggerating or “too much” or a “drama queen/king/llama.”
Your feelings and your emotions and experiences are valid—don’t believe anyone who tells you differently.
No one walks through life in your shoes (unless you donate them, but I don’t mean literally). You matter. Your experiences matter. Your story matters, whether you keep it for yourself, share it with someone you care about, or broadcast it to the world.
You’re loved. And you’ll be missed when you’re gone.
Don’t ever fucking forget that.
All my best,
Sara
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P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.
What I share is not a substitute for medical advice.
Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.
Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.
Comment with any questions, and I’ll respond as soon as I can.
Do-not-resuscitate order: MedlinePlus Medical Encyclopedia, MedlinePlus[dot]gov
A Hospice Nurse on Embracing the Grace of Dying, The New York Times
Nurses’ Experiences with Hospice Patients Who Refuse Food and Fluids to Hasten Death, The New England Journal of Medicine
Ceasing Food and Fluids Can Be Painless, The LA Times
Memory Distortion for Traumatic Events: The Role of Mental Imagery, National Library of Medicine, PubMed Central
What is EDS?, The Ehlers-Danlos Society