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Waking Up After Brain Surgery

Well, the best news of all – I made it, and I am still here.

It was never doubted by my skillful neuro team that I wouldn’t make it. Call me a cynic, but it is one of the scariest things I’ve ever done, this brain surgery. Twice. Waking up was always the first question. And second, how would I be upon waking up? Who would I be? Would I still be me? The brain is a tender and responsible organ. My prayers were generally pretty simple, however: please let me wake up and please let me not be too drastically altered – as in my humor, my personality, my me-ness. So much unknown, which for me, equates to fear.

“I’m just so happy you’re alive,” my husband says to me, a few days after surgery. Which of course made me break down into heaving, grateful sobs.

Me, too. I am so happy to be alive. It kind of sums everything up, profoundly and simply.

Today I am 11 days out from my second craniotomy, my second cavernoma resection in 10 small months. The trauma is fresh and ever-present, with medications every four hours and facial numbness and a right hand that still won’t wake up and still taking my blood pressure every morning and night to stay in my neurosurgeon’s parameters, to try and prevent any more brain bleeds.

And the incision. I am still getting over my fear of showering, and cleaning it twice a day is wild and surreal. I’m still afraid to sleep on the left side of my head. One of my children lovingly refers to me as “zombie mommy,” which makes me laugh and feel sad at the same time.

Grief and joy continue to overlap in this many-layered healing process.

I am hopeful that I’ll feel a little more relaxed at my follow-up appointment, my first since leaving the hospital, in four more days. It’s always a relief to see my surgeon and get the “all-clear,” so to speak, and finally get these scary, spiny, black spider-leg sutures removed from my head.

I think I will feel better knowing that my skin has knitted itself back together, that I can finally wash the rest of the blood out of my hair and that we are no longer watching for signs of infection or fevers or something catastrophic at the incision site.

As you can tell, waking up from surgery was not the end of my fears. The first two weeks, until the follow-up appointment, might be even harder.

For the first couple of days after the surgery, I kept having recurring nightmares that I hadn’t had the surgery yet. My dreams were full of anxiety and waiting and anticipation, and I would be awakened by the nurse for my vitals or blood draws or oxygen levels or medications, and my hand would automatically fly to the large piece of gauze taped to the left side of my head, and I would realize: I already did it. The surgery is over.

The nurse would smile at me in the dark and affix the blood pressure cuff to my arm, amidst the tangle of the heart monitor leads and the PICC line and the IV.

And I would close my eyes and breathe deeply, ever the straight-A student, trying to breathe relaxation into my pounding heart to get that blood pressure down, while still feeling very entrenched and deep in the anxiety from the nightmares.

A silent tear slides down my cheek. This is hard. Even the second time around, even with the known. It is so hard and scary still.

And you must know, nurses, the ultimate heroes and caregivers and loving humans that they are, never miss a thing.

That tiny tear never went unnoticed.

“Everything OK?” they might ask. “How’s your pain level?”

I’m embarrassed. It’s 4 a.m., or 8 a.m., or any time of day or night. It was just a dream. I kind of want to be left alone and soldier through my anxiety and try to sleep. What is wrong with me? I’ve done this before.

Instead, I answer honestly. We’ll blame the seizure medication, which I enduringly refer to as truth serum. I spill all things on this medication, which is well-documented by my friends and family from past bouts with these medications.

“I’m having nightmares,” I venture, hesitantly. “I keep dreaming that I haven’t had the surgery yet, and then I wake up and realize I already did the thing, it’s done already. I just can’t shake the anxiety.”

My nurse looks at me quietly, knowingly. She gently removes the blood pressure cuff. She doesn’t offer me a sleeping medication and she doesn’t offer to call the doctor on-call to see about adding an anti-anxiety medication to my already enormous list of medications.

Instead, she bends down slowly and gives me a long, loving hug.

This is my undoing. Tears and words pour out of me in a torrential flood, on the edge of my hospital bed, in the dark.

My husband is at home with our three children, asleep. I miss him desperately, and know my nighttime anxiety would be so helped by his presence. Just having him near me helps me sleep deeper and feel safe.

But here I sit, night after night, alone with my fear and the nightmares I can’t control.

And this loving nurse reaches across my bed and enfolds me in a silent hug, and I am completely vulnerable and alone and undone.

I sob in her arms, breathlessly. Sweet release.

I have learned over the years that I must ride these huge tides of anxiety or anger or fear and truly feel the emotions deeply in order to move through them toward a solution or gratitude or courage or joy.

This hug from a complete stranger, from nurse to patient, is my unraveling and the greatest medicine during my seemingly eternal hospital stay.

The kind nurse silently and knowingly hands me a box of tissues. I blow my nose, and she talks softly and sweetly to me. We make a plan, and I give voice to my anxiety and the nightmares. And suddenly, maybe it all doesn’t feel quite as big – just a bad dream. She gives me another strong hug then quietly slips away, off to attend to her other patients.

I roll to my good side, the one without the large swathe of gauze, sigh deeply and fall into my first dreamless sleep.

The nightmares have faded since leaving the hospital. The nights, and sometimes the days, are still long and hard, especially alone, recovering quietly away from my husband and children. There are too many hours alone with my fears and thoughts, worrying about the incision and healing and still processing all of the trauma from three weeks in the hospital and emergency brain surgery. My alarm still chimes every four hours for pain medications I am able to manage on my own since I continue to sleep alone, by choice – I fear my husband rolling over and accidentally hitting me in the head in his sleep.

I suppose I could sleep with a helmet. I do miss him.

But frequently I also choose to think of how far I’ve come, even in 11 short days. The fear is real. Yet so are my strength and gratitude and joy. Two sides of the same coin – heads or tails? – both real and authentic and needing to be noticed.

I am so happy to be alive. I am so thankful to be walking and talking, to kiss my husband, to hug my sweet children.

I am so grateful that the nightmares have ended, even if my waking fears have not. I have done this before – and I remember, on my good days, that the fears are magnified and all-consuming now, but they will fade over time with more milestones reached and continued progress and busyness and fuller days and nights.

I am out of the hospital now, for one full week. Now my phone chimes an alarm to wake me at 4 a.m. for my pain medication, instead of a nurse’s gentle touch. I continue to take my own vitals, just twice a day, with a blood pressure cuff my mother purchased at a local pharmacy.

And there in the darkness, in my small moments of courage and gratitude, I sigh deeply and am grateful to be alive, and for soft sheets, freedom from wires and cords and perpetual cuffs and the end of the nightmares.

For me, courage can mean the smallest of observations, a shift in perception, a tiny step toward gratitude. How grateful I am for the bigger picture – to be alive. And how grateful I am to sometimes look my fear straight in the eye, for 4 a.m. chimes, for the memory of a nurse’s love and for the small courage that sometimes comes softly in the deepest and darkest of nights – often in the most unexpected of ways.

Strength for the journey.

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