When I Lost My Story

Nov 12, 2018 · 9 min read
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In knitting, a dropped stitch happens when you accidentally skip one of the little loops on your knitting needles. Instead of working it through its partner, you let it slip through the cracks.

If you don’t catch it, it keeps falling, leaving a hole or a “run” in your work that you may not be able to fix later. My early knitting experiments were riddled with these gaps. They made me panic. When I caught them early enough, I used to bring them to my mom — my first and only knitting instructor — and give the whole mess to her to fix. Through some sort of magic available only to moms, she did.

A dropped stitch is no small thing. Miss it, and your whole piece unravels.

This is essentially what happens to me in March, when I have my double mastectomy. I will not write about this moment for a long time, because I won’t know what to say. What else can I say? I dropped the stitch. I lost my story.

Up until now I have woven a narrative in my mind. It hasn’t been neat and tidy. It has been lumpy, multicolored, sometimes hastily put together. But it hasn’t fallen apart, and it has kept me warm through the longest, coldest winter.

That thread ends sometime a few hours after I get out of surgery. Its last stitches look like this:

I wake up. I rest for some time in a dreamlike state. I feel no pain. I am carefully lifted onto another gurney and taken to another room, where I am alone and everything is quiet. A nurse is asking me if I’m ready to see my parents. I tell her that I want to get my voice back first. She encourages me to cough, to get my lungs going and clear my throat. At some point I decide that I can speak clearly enough to see my parents, so I tell her, and they come in, relieved and softened like carrots left out on the counter.

I have told them not to give me back my phone until I seem lucid enough to use it responsibly. As usual, I have worried too much about things that don’t matter and not nearly enough about the things that do. At some point, though, I must have recieved my phone, because later I will find in my Notes app, timestamped to approximately these hours, a stunningly skillful English translation of a Russian poem.

Yes, I say, life is still beautiful

Even when it’s difficult and when it’s dangerous

Even when it’s unbearable, almost terrible —

Life, I say — life is still beautiful.

And here the thread frays and frays and fades to nothing.

It picks up again an indeterminate amount of time later. Days, maybe a week or even more. And when it does, it is knitting itself into something else. Something new. Something I did not choose. My comforting patchwork blanket is gone. Instead I am knitting myself an acrylic prison. The story I am telling has become twisted, a minor-key version of itself, the file corrupted, the colors washed out and mixed into an ugliness I couldn’t have imagined.

Someone has run a horrific find-and-replace program on my brain. Before I would’ve said that I feel strong and capable in how I’ve handled this. Now I insist that I’m pathetic, a whining and sniveling mess, a failure. Before I would’ve said that my medical team is on my side and I trust them implicitly. Now I believe on the one hand that they failed me, treated me worse than an animal, yet on the other that this is somehow still my fault. Before I would’ve said that even if my loved ones don’t understand my experience entirely, they can at least imagine how I feel and be there for me. Now a wall of ice has crystallized between us, and we can just barely see each other through it. They cannot hear or feel me anymore.

And my body. Oh, my body. My desecrated temple, my crumbling vessel, my oldest friend. In its hour of need, I hate it in a way I’ve never hated anything. Like everyone who sees injustice and blames its victim to feel better, I quickly decide that the suffering my body feels is directly proportional to its badness, its worthlessness.

In that way, my own suffering can at least feel justified.

I may never entirely understand what happened when I dropped the stitch and lost my story. My memory of those days is more gap than substance, a radio tuner searching for a signal in the wilderness. It only finds a few blips.

What I do manage to remember feels very real and has been corroborated by those who were there.

At some point, my last dose of IV medication runs out.

A fire grows in my chest, crackling and spitting sparks. I don’t understand it. I panic. I can’t breathe. I keep trying to say that I can’t breathe I can’t breathe I can’t breathe I can’t move I’m catching on fire the fire is spreading I don’t know what’s happening why can’t I breathe can’t you put out the fire put it out put it out put it out

I am given a 5-milligram tab of oxycodone.

(I later learn that this is the lowest possible effective dose of that medication, and that there was probably never any chance that it would work for me this way. That in and of itself wouldn’t be a problem if not for what happens next.)

Half an hour later the fire burns even hotter. I am told, “I thought you said your pain level was only a 7.” I choke out that it is now a 9. I am told that the pharmacy has been called to request a higher dose.

Some indeterminate amount of time later I am told that the pharmacy is not responding to the calls “for some reason.” I come the closest I have ever come to actually begging another human being for something and request IV medication. I am told, “Well, you can’t have IV meds when you go home from the hospital,” as if I’m a 5-year-old who has asked for candy before dinner.

Eventually the nurses relent and I am given something that allows me a few hours’ peace so that I can sleep.

The next day I am told that I need to be ready to leave the hospital today. This means I need to walk. Trying to sit up in the hospital bed, which seems to fold me in on myself, is (and will remain, for the foreseeable future) the single most horrifically painful thing I have ever had to do, because the nursing staff is continuing to deny me all but the weakest forms of pain relief.

At this point I do what I think most people would do in this situation — specifically, I lose my grip on reality and start to wish for death to come and take me. I become completely unable to understand what is going on. At some point a nurse condescendingly but gently rebukes me for not telling her about my pain level sooner. I don’t even point out that 1) I have been telling the nurses about my pain level, and 2) it doesn’t seem to make any difference what I say to them about it. I don’t point this out because I am no longer in touch with that reality. The new reality becomes that I am in pain because I didn’t communicate my needs to my nursing staff.

Trying to verbalize what I’m feeling elicits completely irrelevant responses from the staff. Like this:

Me: “I really need something, I’m in too much pain — ”

Nurse: “Well, the surgeon said that your incisions look really good and should heal quickly! You should be able to go home from the hospital today!”

Me: “But I can’t breathe, my chest is so tight — ”

Nurse: “You’re going to need to be able to walk and use the restroom if you want to be discharged today!”

Me: “But — “

I give up, I think, at some point.

There are, it seems, two possibilities. Either I am somehow incorrect about the level of pain I’m experiencing, and everyone around me is correct in not acknowledging the pain because it doesn’t exist. Or I’ve gone insane. The first option doesn’t seem possible because THE PAIN IS SO OBVIOUSLY THERE. So I suppose I’ve gone insane.

Somehow I am allowed to stay in the hospital for a second night, for whatever good that does. (Not much.) The only thing I remember of the next 24 hours is sitting slumped in an armchair and watching Netflix with my partner, and walking around and around the deserted hospital floor with a gentle male patient care assistant. I babble on and on and on at him about something or other.

The next morning I am discharged. A nurse comes to remove the IV from my hand, for all the good it did me. I am almost entirely inured to these things now, but a few seconds after she dresses it and leaves the room, I look down at my hand and find that blood is gushing out of it, staining my sweatpants. I start to panic and sob, huge heaving sobs, calling for someone. My mom is in the room. She runs out and gets the nurse. The nurse returns, calmly, telling me that sometimes these things happen. She redresses the wound. This time, she remembers to tell me to apply pressure to it.

Later, at home, I will be given these sweatpants to wear, and I look for the bloodstain, but it is gone. I realize this is probably because my mom washed them the right way. I have never been able to wash things the right way to remove bloodstains, just as I have never been able to pick up dropped stitches without reknitting the entire row. But on the other hand it is also profoundly confusing. I remember a massive dark red stain on my thigh, and now it’s gone, and I’m not sure what even happened and what didn’t.

I leave the hospital in a wheelchair. Apparently they have decided to spare me the pain of walking this time. I am sent home with a prescription for Percoset and a muscle relaxant that I had taken in the hospital. The muscle relaxant does very little, but I continue taking it in case there’s some sort of placebo effect. The Percoset does literally nothing. I take it three times, desperate, and then give up and never take it again. I rely on ibuprofen and Tylenol from then on out.

At my post-op visits, nurses and surgeons will remark on how “tough” I must be, to not take the Percoset at all. They won’t know the half of it.

Gradually, the unbearable pain becomes bearable, then ignorable, then invisible. I continue knitting with the yarn I have been dealt, trying to make peace with how cheap and ugly it is. I never do pick up the thread — or reclaim the story — that I lost. I tell everyone who will listen what happened to me, at least as much as I can remember of it. I tell every single doctor, surgeon, nurse, physician’s assistant, and social worker that I encounter from then on out. I make my parents look me in the eyes and understand it. I keep searching for the thread, for the part of me that felt so strong and powerful, the part of me that sang and danced and hiked all the way through chemo, that signed up to raise $3,000 and bike 200 miles to support fellow survivors, that made an art of wigs and makeup.

I do not find it.

And again, I ask the unanswerable question. “Why?” I ask my surgeon, but he has no answer.

“Why?” I ask my nurses. Their faces crumple and stretch in concern and their hands are gentle but they don’t know.

“Why?” I ask my love. But he only drops his head in shame.

“Why?” I ask my parents. They don’t know. They only know that they’ve had it even worse, and I believe them.

“Why?” I ask my cat. But she just chitters at me, and headbutts my hand with the full force of her unbreakable kitty love.

“Why?” I ask my plants, who keep me company all summer. I’m sure they hear me, but they cannot answer.

I ask the dough rising in the oven. I ask the dust pooling in my house. I ask the water boiling in the pot.

Nobody has any answers for me, and I’m not sure the answers even exist. But eventually I decide to search for them myself. That day I start writing this book.

A dropped stitch is no small thing. Miss it, and your whole life unravels.

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