This Is Not How It Was Supposed To Be
“Something big is about to happen,” she says to me over the phone. Her voice is wet with the tears that she won’t let herself cry as she tries to keep it together. She takes a breath, clears her throat, her voice determined as she says, “I’m giving myself two weeks. Not that I’m giving up.”
The pause just lingers as I mumble affirmations. I know what you mean, mom. That makes perfect sense, mom. Talking to your mother must have been really intense, mom. Your feelings are valid, mom, you don’t need to apologize.
And yes, I wish I could come visit you mom, but I can’t. Even though they’re letting two people visit at a time now. Even though you see people on the news out and about without masks on.
Even though you’re at hospice house and dying of lung cancer.
Because there’s a viral pandemic happening, and my autoimmune disease puts me at a higher risk for serious complications if I get it.
Because the lack of tests make it so that we don’t know who has it and who doesn’t.
Because aside from my partner getting groceries and walks outside, we are on a full household lockdown.
Because I know the family that does visit you isn’t as diligent as I am, and I don’t trust them to make appropriate and safe decisions.
Because I promised myself I wouldn’t set myself on fire to make someone else warm anymore.
When I went to the ER in early December, my ten-year-old daughter in tow, I expected to find my mother recovering from a hang over, honestly.
The last time she was in the ER, she’d gotten massively drunk, fell, and cut her head open on a table late into the night. I found out what happened the next morning when I woke to missed calls, incoherent texts and a few slurred voicemails.
By the time I saw them, she’d roused my sister to come get her, but I remember thinking, what exactly did she want me to do? Leave my young daughter to go down there at three in the morning to play referee to my angry, inebriated mother and anyone who crosses her path? No thanks. I’d had a lifetime of dealing with my mother’s emotional dysregulation and drunken shenanigans. I had retired from being the fixer, and I wasn’t getting pulled back in.
So when my sister called to tell me that my mom had passed out while on the phone with her, I had my doubts. Even when she said she sounded sober. Even as I drove to meet her at the ER.
Even when she stood with big eyes and a grim face, gripped me tightly and whispered in my ear, “It’s bad.”
Have you ever experienced a situation where you’re told something and instead of reacting to what was said, your brain just kind of goes, “Huh,” and hums along like it’s normal conversation?
That’s what happened to me.
My brain disconnected itself from my heart to numb me so that I could have a rational conversation about my mother having a seizure in her trailer while she was talking to my sister, and then the cancer they found in her lungs, liver, and brain, while my daughter was going to the bathroom across the hallway.
Stage 4 lung cancer. At 55 years old.
That night when I finally went home and told my partner the news, he drew me into his arms and with a big sigh, he told me that it was probably going to be a while before I had a normal day again.
He was more right than he could have known.
I am the oldest daughter.
I am the glue that kept our family together, the manager of problems, the counselor of the troubled parents, and the keeper of things you should never tell your child.
I am the one you moved near after your husband passed away, even though I kept you at arms length and you were so lost in drowning your grief we rarely saw each other.
I am serious, responsible, dependable. I have a mortgage, a 401k, and a stable relationship.
You call me the calm center of the universe.
I will drive even though I have a concussion and can barely watch traffic passing us.
I will spend my rest days taking you to appointments, because you can’t drive anymore and there is no one else to take you.
I will set up rides for you when my head feels like it’s being squeezed with a vice and I’m too dizzy to see straight.
I will fill the meds in your automatic dispenser every week until I know them better than you do, so that you don’t accidentally overdose.
I will wear my smart watch to bed, so when you call me at night to ask when I’m coming to pick you up, I can reassure you that it’s not morning yet and you can go to bed.
I will cry in the shower the morning my grandmother loses her six month battle with breast cancer and the following week when we put my beloved cat down, so that I can still function and endure what I know is yet to come.
I will go back to work before I should, before I am healed from my concussion, because it distracts me from the despair and grief I feel every minute of every day.
I will talk you through setting up your pills over the phone when I am sick. Even when it takes 45 minutes and we only get three of the four pills done.
I will call in your refills and pick them up, talk to your social workers, make your doctors appointments and take you to them. There is no one waiting in the wings to help with the incomprehensible load of tasks, information, and emotions when someone gets cancer, and you’ve burned too many bridges.
I will watch the cancer rob you of your hearing, your sight, and your memory, knowing there’s nothing that anyone can do to help.
I will tell you what day it is, when your appointments and rides are, when you last took your pills and what they were whenever you ask (which is often all we talk about). It’s already written down, but you need to feel like you have control over something in this uncontrollable situation.
I will confirm that our conversation actually happened and wasn’t a dream, and listen when you tell me about the voices you’re hearing and the things you’re seeing that aren’t there.
I will try to believe you when you tell me you adore me and love me more than life itself, and not let the resentment and anger from the past extinguish your words.
When the Coronavirus hits, I will quarantine myself to keep us both safe, even if it means not seeing you for weeks. Even when you decide to have other family ignore quarantine and come in and out of your home, and the time I had planned to spend with you was no longer an option, because I need to keep my own family safe.
I will sit on your back porch on a cold spring morning, talking with Verizon for three hours, to set up the brand new iPhone you had to have (and will later complain about endlessly). And I will wipe it down and everything else I touch before I slide it through the cracked open door.
I will fall apart when your body can no longer endure the chemotherapy, and the weeks or months we thought we had turned out to be much, much shorter. You didn’t want to know, and now it’s too late, and I’m trying not to resent you for that.
I will walk and meditate every day so that the anger I’m feeling doesn’t completely engulf me and singe the people I love.
I will remind myself that I have to focus on what I can control, and let go of what I can’t. Especially when it involves family members who want to help but go about it in the worst possible way.
I will tell you when it’s time to go to hospice house because it isn’t safe for you to live alone anymore. And even though I haven’t seen you in a month because of the pandemic, you will listen to me because you trust me.
I will wonder if I made the right call when you step into go-mode to get ready for your move, because you are more you in those moments than you have been in months, so full of life and clarity and love that my heart is both full and breaking apart at the same time.
I will no longer wonder a few days into your stay. You fade away again, like dandelion fluff carried on the wind.
I will take my smart watch off at bedtime because you’re safe and cared for now by someone other than me.
I will breathe and smile and cry myself to sleep because there is no more running, no more things to do, no more fighting to keep us going and roll this boulder up the hill with you pushing it back down all the while.
There is just grief and loss and pain and the twisted remnants of love, and a pandemic keeping us apart while you fade away.
When my therapist asks me what I need from the time I have left with my mother, I don’t know how to answer her.
What else is there when I can’t be with her and hold her hand through these last moments.
When I have to constantly remind people that no, I can’t visit because it might literally be detrimental to my health and no, I won’t risk my life to give someone comfort — not even my mother.
When I know that any wrongs from the past will never be righted, because she is who she has always been and nothing will change that — not even death.
So at my therapists recommendation, and for my own sanity, I’ve decided to try to say yes as much as possible. No, I can’t visit becomes yes, I’d love to visit when it’s safe to do so.
Yes, I’m looking forward to going wig shopping with you.
Yes, it would be great to go out to dinner when we’re able to.
Yes, I can visit when the quarantine is lifted.
I say these things knowing they will likely never happen, because as hollow as it feels, this is the only comfort I can offer to my dying mother.
After five months of fighting by her side against a vicious disease, all we have left now are these moments and conversations, each more fragile than the last.
There is no roadmap for handling the grief and loss of a parent, and this is multiplied exponentially in the face of a global epidemic. I would be a fool to try and offer advice, because there is no right way to handle any of this. It is madness, unfathomable in its depth, and I can only try to not drown in it.
And so I listen to my mother tell me about the dancing cockroaches on the floor of her room, I drop off some Star Trek movies and cherry-flavored pop tarts, and we make plans to FaceTime soon for dinner so that we can “go out to eat together” and she can see her granddaughter.
I want to make the most of the time we have left with each other, however long that might be, in whatever ways that we can.
When the number of things you can’t control so far outweigh the things that you can, sometimes that’s all you can do.