By Kristin Mattson
“Mysterious affair, electricity.” —Samuel Beckett
Friends tell me that my personality has returned. I laugh more. I smile like me, unmasked. It hasn’t been an instant or dramatic change; she didn’t raise me from the dead. But as time stretches since the surgeries and we continue to balance my medications with the contraption’s settings, a little more of my light has seeped back in. I am grateful to Her for that.
To say I’m grateful to the woman who brightened my dimming light seems a little weak. But, in truth, I don’t know how I feel or how I should feel. Not long ago she held my life – my mind – in Her hands. I twice allowed Her to drill holes in my skull and thread live wires into the inner recesses of my brain. By the second time, I wasn’t sure I liked Her, or trusted Her, and yet I must have felt some sense of sureness, since I granted Her power over my identity for that second surgery, and the third.
In the beginning, I did feel sure. A tiny woman with an outsized personality, I was drawn to Her from the start. The ease with which she related to me and my family and Her skill at explaining complex surgery without jargon or oversimplification made me trust Her immediately. I felt confident to be partnering with Her for the awake brain surgeries ahead and understood instinctively why outcome data shows that women often fare better when operated on by other women. But I soon discovered faults in our connection. While I never doubted Her technical competence, I reached for Her often after that first meeting — as a friend, a counselor, a guardian — and touched only air. Sometimes I saw in Her a desire to reach back, perhaps prevented by the time-and money-crunching American healthcare system or competition or imposter syndrome in an extremely male-dominated profession. I believe our lack of connection impacted my care. When I was in the thick of the ordeal, it made me angry. Now it just makes me sad.
***
I remember when it started to fall apart: The first time I saw Her on the day of the first surgery was right after my headframe placement. Intentional or not, Her timing meant that we would discuss what to expect from my brain surgery while I was constrained by a very heavy headframe screwed into my skull. Because of the weight and shape of the headframe, I could not tilt my head back far enough to see Her face or make eye contact. She made no attempt to equalize the power differential noticeable in the room. I asked Her how long the surgery would take, and she made some joke about how she could speed it up if I had somewhere to be. Maybe I asked another question or two, maybe I didn’t, I can’t remember. She said she’d see me in the OR and left and I was wheeled to radiology to have an MRI.
***
I am claustrophobic. I have had successful MRIs and know how to distract my mind from the shrinking walls. Music had been most helpful, but I suspected — and they confirmed — that a headset would not be possible with the headframe. When I got to radiology, I was transferred to the MRI table. The front piece which enables the camera for the MRI was attached to the headframe, significantly obstructing my view, and cutting my reality into slices. To immobilize my head to best visualize a clear path for the leads, the headframe was then secured to the MRI table with screws. I knew all this was coming and while I was breathing fast, I was doing OK until they tied my arms and legs down. I asked if they could free my arms and legs and was told they could not. I think I pleaded. They said no. And then I panicked. Lost breath. Cold sweat. Spreading whiteness.
“I need to sit up.”
“You can’t because you’re secured to the table.”
“Just to get my bearings.”
“It will take too much TIME! (She’s not going to be able to do this.”) If you sit up, I’ll have to get the big boss down here to give you something to deal with your anxiety.”
“FINE, WHATEVER, JUST LET ME SIT UP!!”
While I would have given anything and everything to sit up at that point, I did not want medicine. I wanted time. Time to adjust. But no one heard that except one woman in the room, a PA, who tried to support me but lacked the authority or confidence to take charge. Everyone else heard the OR clock ticking and a noncompliant patient who was gumming up its works. There was no real discussion, the focus was on getting me to comply quickly. Medicine seemed like the best option. But to medicate me, they had to get Her down from the OR, call the anesthesiologist, and then, wait for everyone to arrive AND for the medication to take effect before shoving me into the MRI. If I had been allowed to sit up and gather myself, I am fairly sure less time would have passed before my MRI was completed.
When she arrived in radiology, she huddled with Her staff out of my earshot. When she talked to me, it was clear there was nothing more to discuss. She was pleasant and efficient and approved the administration of the drugs. The conversation was over. She could not hear me, so I did not talk. The anesthesiologist told me I was going to feel like I drank six cocktails and then — NOTHING. My MRI was set to start about 10 a.m.
My next clear memory is waking up in a hospital room the following morning and calling my husband to tell him I was okay — or maybe to ask him if I was okay.
***
“So, you really don”t remember anything from the first surgery?”
She asks me this while she’s having me demonstrate the accuracy of Her placement of the leads before she closes the hole in my skull during the second surgery. When I tell Her I don’t, she says, “We do, we’re all still traumatized by it.”
And we all laugh like we’re in on some inside joke, but really, I’m the butt of the joke and it’s not all that funny. I do have a smattering of memories from the first surgery: sliding down colors, trying to name the American presidents in order, riding in Her spaceship in the OR, bucking on the operating table because my restless legs were out of control, and I wanted to get out of the leg strap. But I don”t know what’s real and what’s not, so I don’t share.
What I do know from reviewing my own medical chart and talking with my family is that eventually the benzodiazepines they gave to relax me appear to have had the opposite effect. As I became more agitated, they administered more Ativan and Versed to calm me down, and instead they amped me up. Eventually two doses of Dilaudid did the trick but also seemed to feed my hallucinations. I sat like a Buddha and pantomimed plucking tasty morsels out of the air and repeatedly struggled to get out of the bed. That’s how my 21-year-old daughter found her mother when she arrived first at the hospital and was ushered back into post-op. Fearful and confused by the lack of explanation for my behavior, she started to cry. So, no, it really isn”t that funny.
***
“So how are WE going to get through this surgery tomorrow?”
The emphasis is on the “WE” — apparently my first surgery is now our shared trauma. My husband and I are at Her office the day before my second operation. In the time between surgeries, things have been tense between us. I wrote Her a letter expressing my frustration that drugs were such an immediate and inadequate solution to my anxiety. Why hadn’t I just been given the time to gather myself that I had requested? I told Her I hoped that things could proceed differently next time. She had responded by voicemail expressing clear irritation with my questions and communication. She concluded Her message by informing me that while she would support my desire to complete the MRI unmedicated, they didn”t have an infinite amount of time and eventually she”d have to either sedate me or pull the plug on the whole operation.
The meeting is short. I reiterate my plan for a drugless MRI and she reiterates Her skepticism. In the end, we agree I will be given time to try, and if it stretches out too long, she has my permission to medicate me in a way that preserves my safety and gets me through the procedure.
***
On the morning of the second surgery, I get woozy when they put in the IV and need cool compresses and more air. I watch as confirmed suspicions are passed around the room. Again, the shaved head. Again, the lidocaine shots to the head — burning, searing pain — followed by the burrowing of the headframe screws. Again, the intense slowly dissipating pressure in my skull, crushing my ears. I have closed my eyes to block out the room and the people and the pain and the doubt. Someone is holding my hand. When I open my eyes, it is Her.
***
A resident is wheeling me to the OR. She follows behind with Her assistant. They are discussing the drugs they have on hand for me. They have Xanax and Ativan, and plenty of them. I’m not sure if they know I can hear them or if they care, but I say to the resident:
“They don’t think I can do it. Well, I’ll just have to show them.”
He agrees kindly and I feel like an impudent child, my bald head, my ridiculous crown, my disbelieved promises.
***
I am screwed to the table, tied down in the MRI machine. I am panicking but concentrating on my breath. The most helpful thing I read about how to confront claustrophobia is not to fight it, acknowledge that the panic will come and that it will also go away. She comes to the end of the tube and yells into it,
“You’re doing great! I’m going to be right here.”
At first, I am irritated — she is holding up the start of the MRI and I think if I don’t train my mind on its banging soon, I will expire or explode. And after all we’ve been through, why would she think Her presence would be reassuring? But then, oddly enough, it does kind of relax me — it makes me smile. This kind of reassurance obviously does not come naturally to Her. She is trying to reach back.
***
To get through this second surgery, I tried to figure a way to channel my anger into a drive to complete the whole process without the aid of sedating or pain-relieving medications. And I was successful, completing the procedure with only topical anesthesia and antibiotics. However, fully awake this time, I realized it was not my anger that carried me through, but rather my partnership with Her.
Surgical suites are cold and frightening places. But she appears to draw energy from this barren space. The confidence she exudes as she conducts the elaborate ballet in this stark universe helps me to relax. Unable to turn my head which is secured to the operating table, I calm myself by tracking the authoritative softness of Her voice. Secure in Her authority here, she is not hesitant to share power. When she talks to me, she moves into my frame of vision. She is generous in Her praise of my performance, and I wait for and treasure Her encouragement. I want to demonstrate the effectiveness of Her work. In these magical moments we are partners, our energy flowing together, channeled toward our shared goal.
***
It has been a little less than three months since my last surgery, and I am in Her office again, this time for bowstringing. My body has aggressively scarred along the extension wire that connects the leads in my brain to the battery in my chest and my head is getting progressively closer to my shoulder. Then she tells me I look pretty. She says she doesn’t know what it is — maybe my tan (we just returned from Hawai’i) or the new gray pixie that has sprouted from my bald head. She claims she doesn”t know what she”s drawn to, but I suspect that she does. She is admiring the way Her wiring illuminates my previously listless features and makes me seem more alive. In response, because the circuit that allowed our energy to flow together in that second surgery still connects us, I start to reach for Her, to thank Her for the brightening and to allow us both to share in the glow. But too much has passed between us and the energy we create is unbalanced and unstable, like static electricity, and I withdraw the hand I had thought to extend, afraid of being shocked.
Kristin Mattson teaches political science at a small women’s college. Many years spent as a patient, family member (of a patient) and educator have given her both a great respect for and a healthy skepticism of the American medical system. Presently, she is enjoying putting her newly energized brain to good use: rock collecting, swimming in any body of water she can find, and laughing with family and friends.