I can take your pain away.
You don't need to be strong.
What is worse, being the person in pain or supporting a person in pain? (As a supporter you have more power than you know.)
In an ultimately meaningless universe is meaning possible?
And what I imagined growing old was like, how fast it would go, and if we are lucky to die of old age.
Do you have those days when you cannot get out of your skin but you need to? How to describe this feeling? The anger at one’s mother for calling to wish you a good day (she should know better, you have asked her countless times not to call you during work hours… even tho technically today is Labor Day, and one should technically not be working.) The amplified aches and pains of a not-so-full night’s rest. (I woke up in a cold sweat two times last night dreaming about doing drugs in high school, which I never actually did.) Someone took too long in the shower. Someone didn’t want to eat their breakfast. Someone vomited up their tube feed. The irrational feeling that everyone is letting you down. That you have to ask for help. The list could go on.
Last week was hard. Really hard. M had a yearly checkup that included a bunch of tests to be done—she had two veins collapse during her first blood draw, which required 4 people to hold her still while they took enough to run all of the tests that were requested. I waited in the car at Oakland Children’s while Josh betrayed her trust and brought her in. The following day we had a clinic, which I also opted out of, only one person is allowed to go and clinic is around 4 hours of sitting in an office while M cries and wants to touch things that are not supposed to be touched. Thank heaven for screens.
For her first year of life, we did this once a month. Saw several specialists for hours in a row, making sure she was healthy and that we had the means to keep her healthy. For the second year of her life, we only had to go once every other month. And have somehow by the grace of covid and food delivery and complete isolation have been able to keep M out of the hospital proper since Feb 2020. Sorry to brag. I am proud.
Medical facilities, which we spend a considerable amount of time in, are like the ultimate hot lava game. Do you remember as a child playing that? It is one where you stand on the sofa and hop around on furniture that you are not allowed to stand on while pretending the floor is lava. And if you fall, or touch the ground you are basically burnt to a crisp and die, right there, if you are lucky you land on the carpet. I feel like most kids have tried this out. Maybe I am wrong. But the floor in a medical facility is a black hole. Anything that touches it is dead to us.
A lot of things can die in a three-hour period. 3 pacifiers, 2 stuffed kitties, 1 blankie, trust in all adults. All objects offering comfort basically gone.
When M had her first spinal tap, I chose to leave the room. Josh held her 6 lb body as a doctor performed the standard test to rule out meningitis. She was 5 days old and had a fever of 105. The triage nurse had said when we arrived that “She was not as responsive as she would like.” So she checked us in. I waited with a family therapist in an adjacent room. I still feel guilty for leaving her there. I left her again last week.
Josh says he is strong. He says he knows how hard it will be for me. So out of a sense of duty or obligation or pity, he has been the person to take on the harder medical stuff. But I cannot imagine how painful it is for him. Something a specialist said to me once was, “Don’t worry, M will forget all of this. Do you remember what it was like when you were a baby?” I said no. But in my gut, I wondered about all the things that my subconscious self might know. All the trauma stored deep within my cells secretly calling the shots.
Let’s just say, for the sake of argument, M consciously and subconsciously forgets everything. Time heals. She forgets all the hands holding her down. All the bruises. All of the pinches and pokes. All the throat swabs and x-rays. All of it. Where will this pain reside? It will fade into Josh. It is really Josh’s pain.
To watch someone you love go through some sort of even mild discomfort is a challenge. Some argue that it is nothing compared to the person experiencing it. But I am going to go out on a limb here and make the case for a horizontal pain. For not comparing and contrasting experiences but just letting them both exist.
This is hard because we are taught that unless something directly is happening to us, there is a hierarchy to pain. That it is impossible to experience someone else’s pain. One that starts at the person in pain and slowly scales out like a stone tossed into a smooth lake; ripples cascading outward, culminating in total disruption. But I am not sure. I believe most people will argue against this.
I guess what I am trying to say is that supporting people in pain is hard. It is its own sort of valid pain. And to deny us, supporters, that validation of pain seems somehow wrong.
In addition to M’s medical stuff, last week I had an outpatient procedure. I was assured it was no big deal. That it would take longer to set up than to actually do. Josh came with me. I closed my eyes and asked him to hold my hand. He did it. During the procedure, I realized that I needed an additional person because my right hand was free. But opening my eyes would have been a mistake. So I cried. My muscles spasmed without my consent. And they were not able to get the tissue they needed without risking harm. I cried. I cried a deep ugly cry. Again, this pressure to be calm. It was no one’s fault. I would just come back in a week and they would try again. What a joy to look forward to.
A few days later, I Googled the procedure. I shouldn’t have. Josh was thinking that I shouldn’t have. He didn't say it out loud, he had thought about it. But knowing me and how my brain works—when you tell me I cannot do something it makes it much harder not to do it—I did it anyway. It looks much worse than it felt. Don’t get me wrong, it was horrible. However, in this instance, I wonder what would be worse? I am dreading going back.
I think that part of my recent depression has been, without the distraction of people and events, outdoors, exercise (I am a lucky person to have meals and a roof), it is hard to find meaning. Also, as a person who doesn’t have a set belief system, meaning is this odd elusive thing that can be attached and reattached with the right particle activity.
My understanding is that most, if not all, particle physicists agree that we live in a random meaningless universe, and yet are creatures that crave meaning at all costs. I am a person in constant need of meaning. If I am in a state of discomfort, a solution must be found that then fuels whatever it means to be creative. However contrived that seems, it feels true. A life without meaning would be of no use to me.
It’s hard not to get bogged down with the idea that all this pain and suffering that we are living through is for the eventual collapse of a meaningless universe.
“One's life has value so long as one attributes value to the life of others, by means of love, friendship, indignation and compassion.” —Simone de Beauvoir.
I feel inclined to acknowledge my privilege. It is a privilege to feel these things. To have my basic needs met. To ponder a meaning when so many are just scraping by. Nevertheless, Covid has stripped our lives of friendship, taken away human touch, wreaked havoc on compassion, and tested the limits of love. In addition, it has made everything outside the home into a lava floor, threatening to consume anyone or anything with just a slip of the hand, or a momentary loss of balance.
And yet, if I can get through today, with all that a day can bring, I still have hope for tomorrow. Irrational hope. Or is it?
When I was young, I remember imagining the horror of being lucky enough to grow old. Time moved slower then. It felt endless in select moments. Waiting became a type of torture. I guess it still is in many ways. My grandparents at the time told me, “Enjoy your youth, growing old will happen faster than you could ever imagine.”
Could you imagine how aging would feel when you were young? The amount of fruitless maintenance required just to keep your body—aches and pains—going? Last week I reread the Times article by Ferris Jabar on how long humans could/should live. If you want to listen to it, you can here. Ferris tries to summarize the differing views that scientists have on how long humans can actually live. He starts by talking about a woman in France who lived to 122. And then compares theories that our lifespan is at its max, like a candlestick, with other researchers who don’t see any reason why we couldn’t live forever.
Photo illustration by Maurizio Cattelan and Pierpaolo Ferrari
“Scientists, philosophers and writers have long feared that a surfeit of time would exhaust all meaningful experience, culminating in debilitating levels of melancholy and listlessness. Maybe the desire for all those extra years masks a deeper longing for something unattainable: not for a life that is simply longer, but for one that is long enough to feel utterly perfect and complete.” —Ferris Jaber
For all the times that people told me to enjoy my youth, I never listened. It was in fact outside of my comprehension. I had literally nothing to compare it to. I wish, however, I could have conceived of how time would speed up. How the years would upon reflection seem like moments unconnected by linear time but by value and purpose.
This I am grateful for. I can run back, through my memory to days when I could feel held. Feel purpose. Feel freedom. To have felt those things at all in the first place feels miraculous. With age, the expanse of emotion has widened.
Would I go back? Knowing what I know now? Unfortunately, yes. Would I want it to continue forever, maybe.
I can take your pain away
If you find a remedy in me
I can take your pain away
You can take as much as you want from me
I can take your pain away
We have a distance between us
I can take your pain away
Every time we can find the clue - Cibo Matto
I am reading your newsletter as a pediatric nurse who used to work in a children's hospital with very sick kids. It is not weakness that you have your partner bring your daughter to her blood draws, or that you "left her" during difficult procedures. I never, ever felt judgment for parents who stepped out of the room. In many cases, setting this boundary allowed them to conserve emotional bandwidth that enabled them to be present in different moments for their child. In addition, although I resist over-generalizing when it comes to gender, I think male partners (whether by nature or nurture) are better at compartmentalizing and reminding themselves that the pain their child is experiencing is necessary (for whatever reason). But I would not conflate this skill with "strength." You ARE strong. <3
I've been in a relationship for a year and 8 months. I'm 25, it was my first relationship ever. From the start he had a lot of trauma, pain and wounds from his past and I didn't know at the time how to take care of him while also taking care of me, I chose to care for him, and for 90% of the time the relationship has been about him and his pain and me dealing with it and helping him, even though he's caused me a lot of pain too.
It feels exhausting, knowing someone you love that much is in pain, suffering and there seems to be almost nothing that I can do to fix it, it has depressed me, and it makes me feel not enough.
And of course there's my own pain that needs to be dealt with but it's just growing inside me.
I got here because I follow you on Instagram and that last drawing you made just spoke to me, I'm not able to carry any more pain while I should be carrying mine.
I'm not familiar with your story, I just hope you, your husband and M don't have to go through all those doctor appointments for that long, I hope M gets well soon, and I hope you find peace in the process, even when the tick of time seems haunting sometimes.
Thanks for writing this, btw.
Hugs from Mexico :)))