How do you go on? What do you do in your life to help you move forward when things get hard? I don’t know that I have a clear strategy or that I even think about it super consciously outside of when I am being asked to do so in therapy. And even then, I am not sure I have a great answer. There are so many different types coping methods and rituals, but they are so individualized, so specific for that person. And I think many of us don’t really know how to explain how they get through stuff, they just keep going forward and then they are on the other side of it. I know that’s how it’s been for me. I learned so long ago that if I just kept moving I might make it. Back then it was survival, but now I am not sure how that is serving me.
In many ways trying to conceive is something that is done privately. We don’t really talk with others about how we are monitoring our cervical fluid (unless you do, then that is awesome) or the anxiety of waiting for a missed period or the sheer weight of grief when things don’t work out. We put on a bright face when friends or family show us endless pictures of their children. We say we are fine with a smile whenever someone asks how we are doing. But how do you go on? Like actually? How do you not wallow in the large pool that grief is?
I wish I knew. The other day, I talked with a good friend who is wading through some huge heart-hardship. Our grieving is different, but similar. We both have experienced loss and that loss has made us so uncertain about how to move forward. Do we hope? Do we force ourselves to try to feel nothing? How do we balance the vastness of love that our hearts contain and the weight of fear? How do we keep going on? Do we keep trying or do we give up?
When I think about going on, I often think about this book, Ongoingness: The End of a Diary, by Sarah Manguso. It’s a brilliant capture of life, a record of everything, through ruptures and onward. There are these wonderful lines from it that I’ve left below for you to read:
“I’ve never understood so clearly that linear time is a summary of actual time, of All Time, of the forever that has always been happening.
The best thing about time passing is the privilege of running out of it, of watching the wave of mortality break over me and everyone I know. No more time, no more potential. The privilege of ruling things out. Finishing. Knowing I’m finished. And knowing that time will go on without me.”
This is the thing I’ve been sitting with lately. That time keeps going. That we run out of it. Each day wakes me up. Each night, my eyes flutter shut. With dawn hinting into the sky, I will again be awake. Every moment, that right now is un-navigable, will clear. We cannot stay in one spot, one place, one moment. This grief is heavy, this fear is unbearable. But, if there is anything I’ve learned from not dying in the thirty-seven years I’ve (still) been here, it’s that you move through these things. You learn to navigate them. You go on. It is Not easy. It never is.
But we keep going.
Day 3 AM
The hint of dawn draws us fully awake. I cannot see my breath forming itself in the air, but it feels like I can. I pull the covers closer around my face. I can hear R doing the same. I roll over to face him. The dogs are tucked in tight circles between us. They are under blankets, which is something they never do. It really does feel like we are in Roy, I say, even my ears are cold. He breathes hot air into his palms and holds them against the sides of my head. R is a rare one. He can just live through the hard stuff. He can keep finding the good. He can keep smiling. In many ways the two of us are so similar, but this is one way we are not.
The cold creeps in deeper and I start to fuss. I don’t like being cold. As I’ve gotten older, it’s become harder to deal with. It may seem silly, but through the last year of thyroid issues, temperature has become a massive factor in the quality of my day to day life. It’s the thing that will cause me to start seaming, and ruin a day. I’m always searching for that perfect zone. And I can’t almost never find it. I’m constantly too hot or too cold, my body fluctuating temperature violently trying to find equilibrium.
Finally, I decide the only way to deal with this is to deal with it. I get up and wrap the dogs in the remaining blankets. I pull on layers upon layers and open the shades so the sun can maybe heat the place a bit. The floor is a sheet of ice that I feel even through my socks and slippers. I go to the fridge and open it. A stale scent shifts out and around me. Joy. I don’t try to rush my movements. Whatever’s dead will stay that way regardless of how fast I take out my medication.
Next I open the freezer and realize this is where the real danger is. The ice packs are all soft. Of course they are. I grab one of the bigger ones and stick it into my leggings against my belly. The house is already so cold. This additional freeze cracks through me. How much longer can this possibly go on, I ask R, it’s not even windy anymore. He shrugs and comes to stand with me while I do the shots. The skin is scabby from the freezer burn incident and my nerves are shot.
I put all the medication out on the counter. I flash back to the first couple shots I had to do in the first round. The anxiety that flooded my body. The way I couldn’t handle doing it myself, how even being near the needle made me nauseous. Is there some strength to be had in here. I don’t know. And maybe I am too scared to face it. I mix the medications. Withdraw the fluid into the syringes. Tap the tops of the needles. Push them into my skin. The sharpness is there. The pain is there. The pressure of the medication flowing into me is there. I try to just be with it all. When I am done with the meds, we clean everything up. I clean the counter too, for good measure. The marble is so icy it burrows into my fingers through the cleaning wipe.
I can’t do this anymore, I say to R, we need to do something. He suggests we go to the local coffee shop. We call, determine that they are open, and pile ourselves and the dogs into the car. The temperature outside is so much warmer than inside, it feels absurd. The coffee shop is packed so we get our coffees and sit in the car facing the sun. Everyone is warm. We are evening out. I call my best friend. She has power and heat. I ask if we can come over for a while rather than go home and she says of course. I know the dogs will be happy running around her back yard with her dog. A small break of light through the darkness. Off we go.
PM
R and I spend the day trying to keep the dogs comfortable. The house is still cold well into the afternoon warmth. We keep the pups on our laps in the house and follow the sunny spots as they move through the windows. We all go for long walks till we find a grassy spot and sit in the sun. In the warmth we steal small joys, small bits of hope. I try to fight off my pessimism and enjoy each little activity. Our big dog gets a scrub. The little one chases and chews on sticks I throw to her. They live in the moment, so they are happy. I want to be more like them.
When we go to the store we overhear many conversations about the power continuing to be out for another day or so. I try not to get frustrated. I know that it’s better than wildfires tearing through the house. But how do we keep going like this. Soon enough evening is approaching, and with it time for me to take my evening shot. The power is not yet back.
None of my meds are cold but I’ve worn myself through my emotions and I am no longer able to be angry. The fight’s been sucked out of me. I go through the motions wiping down surfaces with alcohol pads, twisting on the needle tip, inserting the needle, pushing the medication in, and applying the bandaid after. I run my fingers over my mottled stomach skin. It is what it is, I say.
A couple hours later, as R and I are playing farkle, the power randomly comes back on. A cacophony of noise erupts from the heater and the fan in the bathroom. I cheer and dance around the living room. I turn all the lights on and off and on again to make it feel real. R is less enthused, it was kind of nice being without all the distractions. I know what he means is: I liked being present with you. Well, I offer, maybe we should plan a camping trip sometime soon. But damn, it’s nice to have heat again.
Through the rest of the evening I keep being struck by things that I am grateful for. Heat, toilets, warm water, electricity to cook, loud bathroom fans, sunlight, friends, my Dad, the dogs, R. All the ways that life surprises us, the ways things buoy our hearts. So much has felt heavy lately. Over the last twenty-seven hours, all I could think about was the power coming back, but it was nice to just be with my favorite person and focus on being alive. As I make dinner, I put on a playlist on shuffle and this song comes on.
I love this song and when it happens to arrive out of the depths of a playlist, I often decide to listen to it on repeat for a while. A few minutes, an hour. It is this constant surprising reminder to pay attention, to be present, to be here. Maybe hope comes from this place of just being. Maybe hope is less about expectation and more just living into the future. I cook our dinner and think about all the ways my brain doesn’t want to learn this lesson.
Day 4 AM
Today the office appointment is later in the morning and R won’t be able to make it because of work. It will be my first appointment I go to alone. Part of me is nervous about that, but the other part keeps telling me to find strength in this. I tell myself it’s good for me to do things like this alone. Plus it’s just bloodwork and ultrasound. Not a serious or nerve-wrecking appointment.
I decide to put on some music, since that helped in the last cycle. It forced me to focus on something outside myself while going through this thing that’s all about being outside myself. I scroll through my playlists till I find the song I am looking for and put it on repeat. “Hey, Buddy Bolden” is one of my favorite songs. Spotify tells me it was my most listened to song last year. I’m not surprised by this.
I prep the shots as I think about why I like this song so much. During my MFA program, I struggled with a lot of the books I had to read and annotate. One of these books was Michael Ondaatje’s Coming Through Slaughter. I should have loved it instantly, the way Ondaatje plays with form and literary structure and that it’s centered in New Orleans - a place I’ve been obsessed with for decades. But I struggled with the violence, the anger, the way women exist in the narrative, the vagueness, and the way mental illness presents itself through the character of Buddy Bolden and the book. Looking back, I know that the thing I actually struggled with the most was that I couldn’t figure out how to annotate it, what to say, how to argue a point around it. Annotations were the hardest part of the MFA for me. I didn’t feel like I ever really understood what I was doing in them, and it made me feel disconnected from the literature rather than absorbed in it.
Recently, I’d started re-reading the book because I think second chances are important and Ondaatje is a brilliant author. In my second reading of Coming Through Slaughter, I developed a new relationship with the work. I heard Bolden’s cornet playing through the pages, I held his children’s hands as he walked them to school. The relationships bloomed through the page and the mental illness felt more familiar than I initially was willing to accept. For fun, I searched for music about Buddy Bolden and found the above Nina Simone song. It begins with a haunting tip-tap of minor piano keys. Then her incredible voice soothes you. Or lulls you. Or drowns you. The song, a eulogy. The song, a celebration. The song, a hymn. It’s a brilliant piece of music and even though it’s somber, it always makes me feel safe.
I listen to it play over and over, and push myself through more painful shots. I don’t know why these are hurting when I am using the ice packs. Perhaps in the severe freeze from a couple days ago broke something in my body’s ability to be numb. The medication floods into me and Nina sings, Here they come, here they come. When it’s done, I clean up the mess. I throw away the vials, the alcohol pads, the bandaid packaging. I put the used needles in my new bright red sharps container. I try to think about the rest of the day and not stay stuck in this moment.
PM
My nurse calls me later in the afternoon with an update about my bloodwork and ultrasound from the morning. I stare at the image in the portal as she talks. Everything is low, but she says that makes sense because we’re still at the beginning of the cycle. I feel less certain, less convinced.
I compare these statistics with the ones from my last cycle. All of my numbers were higher by this time, last time. Then, I had more and larger egg follicles by now. My medication instructions stay the same and are posted in the portal. I will have another appointment for bloodwork and an ultrasound again tomorrow. Fears of failure flood my brain. Maybe we should have waited more time between the last round and this one, give my body more of a chance to recover. What if even with the new medication, we barely get any eggs. I don’t hear much of what else my nurse says.
When it’s time to do the evening shot, it’s hard to find a spot to do so that isn’t bruised or sore or peeling from the freezer burn. I use a t-shirt to block the damaged skin from the ice pack while trying to numb a sliver of available flesh. While the ice starts to penetrate my body, I randomly decide to let Spotify create a radio station based on a playlist with the “Hey, Buddy Bolden” song in it and prep my evening meds.
Things I’ve discovered in my random quest to learn more: Buddy Bolden was an alcoholic and likely lived with schizophrenia. At thirty, he had an alcohol-induced psychotic break for which he was hospitalized. He spent the rest of his life in the East Louisiana State Hospital (at the time it was an “insane asylum” with horrific patient treatment practices). Nina Simone was bipolar and also struggled with alcohol. It is very common for people with mental illness, undiagnosed or not, to self-medicate with drugs or alcohol. I should know. I’ve lost many years of my life to those behaviors, to trying to free myself from myself any way I could. I wonder how much of their mental illnesses played a part in their music, how it may have infused itself into what they created. I wonder how much of their ongoingness was challenged by their mental landscape.
A song comes on as I am measuring the dose of medication and it makes me stop what I am doing. It’s “The Black Swan” sung by Nina Simone.
I’ve never heard it before this moment, but it feels like a memory. I realize I’ve been standing here with my mouth open and my syringe in my fingers for the entire six minutes of the song. I quickly peel the softened ice pack away from my skin, pinch my skin, and insert the needle. I feel the needle prick into my skin and throb as the medication floods in, but I don’t care. All I can think about is this song and the emotions it’s creating inside me. As soon as the medication is fully in, I move fast pulling the needle out and getting through the cleanup so I can do some research on this song. I end up with some blood on my fingers but don’t notice it till I am typing on my computer.
The song is from an opera called The Medium. In the libretto written by Gian Carlo Menotti in 1936, Madame Flora, a medium, performs fake seances utilizing tricks performed by her daughter, Monica, and a mute servant boy, Toby, for patrons. Flora is portrayed as a violent alcoholic who, during the fake seance in Act I, experiences a true supernatural moment. Throughout the rest of the play, her psyche unravels until the devastating finale. It is a heart-breaking story about people who cannot find a way to move forward.
What ways do we let our greatest fears take over our lives?
Day 5 AM
Another day pushes itself through our windows and I am awake. The first thing I notice is that I am comfortable, warm even. As I stretch and scratch the big dog, who is wedged against my ribs, I feel grateful for the warmth, for things to be returning closer to a normal. It might even be a good day, I think to myself. I get up and take a shower. The hot water makes me feel even more at home in myself. I take care with every step of washing my hair, soaping my body, rinsing it all away. It feels good to do this thing and I focus on that moment.
As I prepare my medication, I notice that the HGH is diminishing quickly. Instantly the anxiety floods me again. Don’t we need this to get more eggs, to get good ones. Shouldn’t I be taking a higher dose. Or dosages through the whole cycle. Even though it’s very expensive and we are paying for all of my meds out of pocket now, I am immediately on the portal messaging my nurse asking questions. I just want this round to go well. I just want to avoid the heart break of round one.
I prep all the medications and take the shots. They hurt, but I have grown used to it. Not in that I don’t feel it, but I don’t care that much any more. I expect the pain. I tell myself I deserve it. I think again about waves. How I felt good when I woke up, then I was anxious, and now I am numb. How much longer can I do this. Do I even want to. This experience is wearing on me to the point where I am questioning it all. I am the only one experiencing the pain, the flush of medication through my veins, how long can I possibly do this for. How long can I tolerate the thin line of disappointment hugging every corner. Is it even worth it.
As R and I drive to another late morning appointment, I am thinking about why I want to have children. It is hard to speak to something like this, to put it into quantifiable words. I want to say that I just know I do, but honestly most of the time when I try to imagine being a mom, it scares the shit out of me. Will I be good enough. Will I be able to teach them the things they need to know. Will they think I’m too controlling. I try to force these thoughts out of my mind. I close my eyes and try to visualize the big why.
The first thing I think is how terrible the world is, especially right now. How awful humans are to one another, the horrific things we do. How can I justify not only bringing a life into this world, but also spending so much money, time, and pain just to have a child. How selfish am I. My stomach turns over and I feel nauseous. Thoughts keep flooding me. This isn’t going to work. Or it isn’t the right time. Or I don’t deserve to find happiness in this way. I open my eyes and try to refocus on something else. I ask R about his work, about climbing, about anything except having a family. The drive goes on and on.
PM
When my nurse calls to discuss today’s bloodwork and ultrasound, I immediately pull up the portal to look at results. Again, I am comparing these to the last round and again the numbers are dismal by comparison. My heart sinks.
She tells me that I will have tomorrow off from appointments and then come back in the next day. I say okay, and we hang up. I want to ask her more questions about why my numbers are so low, but I know she’ll say the thing I’ve come to hate the most: we never know how things will go. I am tired of trying to accept things as they are. I’ve been fighting the flow of this cycle every moment I’ve been in it. I cry into my hands. This is so unfair, I sob into the empty living room.
My phone rings and it’s my Dad. I pull myself together because I don’t want to burden him with my sadness. He ask about when we need to leave to take him to PT. I tell him and he says, thank you for being so good to me. We hang up so he can get ready for his appointment. I love my Dad. I want what’s best for him. I want to be there to support him and help him. I want to show up for him in all the ways he’s shown up for me throughout my life. Is this what parenting will feel like, wanting to be good enough for someone else while simultaneously feeling mostly helpless. I wipe my tear-stained face and focus on the next task, the next steps of my day. I can only keep moving.
Later when I am prepping the evening shot, I ask R why he wants to have a child. He says because I know we can raise a good human to help the world be a better place. I can’t think of a better answer.
Thank you for spending days 3-5 of IVF egg stimulation, round two with me. These days were such a wave of emotions, and I found capturing that challenging. It forced me to be honest with my emotions and with how sharing them made me feel. I didn’t love doing annotations in my MFA because I felt like my opinion on why a book did or didn’t move me wasn’t important, that proving how I felt about something to someone else wasn’t important, so why bother doing it. I understand that annotations are just a part of the grade to graduate, just like I can now see that sharing these letters about my IVF experience are just part of my process to move through this.
It’s hard to own what you feel, to make it permanent(-ish) in the world. We do not live in a world of mutual love or kindness. We never really did. But that is what I love about story and narrative. Narrative teaches us what it is like to live someone else’s skin for a little while. It teaches us to place ourselves in someone else’s emotions. It moves us outside our comfort zones. There is not greater gift than what literature gives us.
I know these last couple posts have been really hard to live in, but I hope you’ll stick with me through this round, through the rest of this process. IVF and infertility is very, very hard - especially for the person managing the medication, getting the shots, and coordinating the care. It takes a long, long time for things to move forward (just a reminder that we started this process on January 2nd and are now well into June). Yes, some people just get pregnant and that’s great, but many don’t. For so many families, the struggle to conceive is about the endurance of hope.
On, on, on we go.
Manguso 4e. But more importantly, your bravery is an inspiration and a golden lesson in hope. Love, love, love you!