The River

I can't sleep.

It has been a rough day. I feel like I have been drowning, gasping for air, just so many tears. A river of sadness, and fear.

This brain surgery project is proving to be much harder the second time around.

I've been thinking about this a lot, which I'm now realizing, is part of the problem.

See, this time around, I've been hospitalized. There is a lot of time in the hospital. Too much time. Endless time- minutes, hours, even days. So much time. And when you are drowning in fear of poor outcomes, it can feel so very hard to breathe.

The last time that I was up for brain surgery, for my first cavernoma resection in 2016, I had no restrictions prior to the procedure. I was trail running, every morning- out in the fresh air, under the fading starlight, and daily glimpses of sunrise. Breathtaking.  I was spending time with my friends- enjoying dinner and a glass of wine, together. I was working- social justice, advocacy, feeling inspired and committed to social and structural change. I was cuddling with my three beautiful children, inhaling their sweet scent each night as we put them to bed. I was committed to weekly date nights with my husband, the man who makes me feel so very safe and loved- my very best friend. 

The last time that I had brain surgery, of course- I felt fear. But I also felt strong and healthy, courageous, and empowered.

This time around feels so different.

Multiple emergency room visits. ICU. An ambulance ride- so very unexpected. Terrifying, really. Multiple hemorraghic strokes. Seizure medications. More hospitalizations. Immediate pending surgery, resection of another cavernoma, this time on my left parietal lobe.

There were no neatly scheduled visits to the neurosurgery clinic, this time. There was no time for a second, or third opinion. This was not a measured choice, an option, or a well researched and carefully considered decision.

This was a necessity. And it is so very soon. Tomorrow, in fact.

It is 12:04AM here in the hospital. Time stretches endlessly here.

I've allowed myself a few days to grieve. I've learned over the years that tears are cleansing, cathartic, and necessary.

But oh, the tears.

I worry about everything. Not making it. Leaving my kids. Permanent disability. Losing my ability to speak, facial droop, loss of motor skills on my right side.

I've been crying for three days straight. I cry as I wait to get the PICC line placed. I blink back tears as my children and friends visit me in the hospital. Silent tears leak out of the corners of my eyes as the kind night nurses do my vitals and blood draws, and the nurses discreetly notice my tears, and worry that my headaches are too painful.

But it is my fear that is causing me the most pain. "Are you okay?" they ask. "Would you like an ice pack? You can have some more pain meds in 30 minutes." And then: "How would you rate your pain on a scale of 1 to 10?"

My head pain is a 5. I'm used to pain- I'm a pro at pain. 

But my fear? It is beyond a 10. I have jumped into it fully, committed, and I am truly drowning.

I am laying in my hospital bed, in the dark. "Get some sleep," the nurses tell me. "Your next neuro check will be at 12:30AM, and a blood draw at 4:30AM."

I toss and turn. I think about my fear. I struggle. I literally cannot breathe.

And that's when it hits me: I am swimming the wrong way up this goddamn river. No wonder I am struggling against this massive, overwhelming current. No wonder I am weary, crushed by anxiety, and literally drowning.

I am flailing. And I am failing, swimming upstream.

And I realize- I am done with the fear. It is serving no purpose. I am clearly drowning.

I sigh deeply, in the dark. I am all alone, in the dark, in a hospital bed.

I will be okay, I say to myself, so very quietly. I don't really trust it, at all. I am testing it out.

I will be okay. Again.

I will be fine. I repeat this to myself, stronger, at least twenty times. Tears slide slowly down my cheeks. Only this time, they are tears of release, not the struggling sobs of fear.

I trust my surgeon. A mantra. Mantras are healing.

I can feel my body beginning to relax. 

I trust the outcome. The waters of release are slowly beginning to wash over my weary mind and soul.

I am grateful that there is a solution to this problem. I am choosing to fix a problem.

I am safe.

I am loved.

I will be okay.

The metaphor of the river soothes me. All of this time, I have been struggling upstream. Fighting. Unable to breathe. Panicking, and flailing. Drowning.

Courage, I realize, is embracing the river. Embracing the current, the rocks, the unforeseen rapids. The flow.

I can fight and struggle and be in that fear, and that is normal, and healthy, and okay. For a time.

I have to feel those big fears. I cannot simply pretend that this isn't scary, and that there are far too many unknowns.

But at some point- for my sanity and well being, I have to face that fear. I turn around. Slowly. I hold my loved ones close- my life preserver. I embrace the river. I lay down, in the current, and notice the sky above me, for the first time.

I can breathe again. 

I will be okay. 

This might not be what I expected. Nothing ever is. I look down into the river, and my eyes rest on the bright smooth stones, perfect for skipping. For the first time in a long time, I feel a new sensation. 

A tiny ripple of hope.

I can breathe again. I will be okay. I am choosing to be in the river, and flow.

Strength for the journey.

Bittersweet

There are no days or nights in the hospital, it seems.

It's almost 11PM on Christmas Eve, and after sleeping all day, from the aftershocks of the latest brain bleed, and just so, so many seizure meds...

Well, I am finally awake and finally ready for visitors.

Oh, timing.

Business as usual, here in the hospital in ICU, even on Christmas Eve. Meds at 1:00AM, a CT scan at 5:30AM, and a few blood draws in between- Fa la la la la- all of the biggest, worst things at the ungodliest of hours.

My tiny little Christmas tree is my nightlight here in the ICU.

Christmas Eve, 2016. My nurse helped my husband and I decorate the tree. 

We decided it was a good therapeutic exercise for my sleeping right hand, 

tying on the ornaments.

Trying to find gratitude, in the hospital on Christmas Eve, away from my sweet babies and husband, is proving to be trying.

I am so angry that this cavernoma won't stop bleeding. My parietal lobe truly just needs to chill the f#ck out.

I am so grateful for my husband and my friends, for setting up this sweet little Christmas tree. All of the nurses and techs love my little tree.

I wish my husband could be here right now. We felt it best for him to be home with the three kids, on Christmas Eve. Especially with our eldest child, who is on the autism spectrum. My husband can only leave her, to visit me, for maybe two hours at a time. She's barely holding it together, and mostly, not.

I relate. I am also barely holding it together. I told my husband last night that I am overdue for a silent, non-stressful, non-hemorrhage inducing tantrum.

I am thankful for the hospital staff, and their humor. My day nurse refers to the bright yellow socks, for patients that are at risk of falling (from seizures, etc.), as "bright-ass yellow", which makes me laugh. She brings me truffles, and even a handful for my kids. "I don't have any children," she tells me. "I always work on Christmas. I like it," she adds, after a thoughtful pause.

The nurses in the ER and the CT techs are having an "ugly Christmas sweater vest contest". Half the staff is wearing Santa hats. The sweaters are truly terrible. The ugliest. It makes me laugh.

Finally, around 12:30AM, I fall asleep, tears in my eyes. What a crappy Christmas. Gratitude and all.

My night nurse comes in at 1:00AM, to put more meds in my IV. I barely notice him- a sign that I have been here a little too often as of late. I roll over, amidst a tangle of wires and tubes and cords, and fall right back asleep. Truly a gift.

I can't help but notice the phlebotomist, however, who comes in at 3:30AM to draw more blood. "What is your full name and birth date?" she asks me.

Woman, it is 3:30 in the morning, I want to say to her- Who in God's name knows their full name and birth date on this little sleep? "I'm going to turn on all the lights," she says, in a kind voice. I am not feeling kind. I want to tell her to get a headlamp, to let me lay in peace in the dark, and she can shine a tiny spotlight on my arm instead.

She turns on every light in the room, lights that I didn't even know existed. I wince at the blinding light. A sharp sting, as the needle enters my arm. I try to breathe deeply, and I close my eyes. "Oh! And Merry Christmas!" she tells me brightly, as she removes the needle from my arm, and gently affixes a cotton ball with tape to stop the bleeding.

You have got to be kidding me.

The great Christmas spotlights are turned off, and the cheery woman with the sharp needles slowly wheels her cart out of my hospital room. I sigh, and turn my head toward my little twinkling tree. It is 3:45AM.

That is when I notice- there are presents under my tree! I am so confused, for several minutes. I groggily grill my nurse: "Did you put those there? Did my husband come back? Why didn't he come in and say hello?" I almost sound angry, like I'm interrogating this poor man.

I blink back tears. This is coming out all wrong. I fall silent. I am so grateful for my thoughtful husband, and my sneaky nurse, who somehow managed to silently put presents and a full stocking under my tiny tree, between the hours of 12:30 and 3:30 in the morning. And I wonder, as if from far away, from a great distance- Who was watching the kids, while my husband snuck in here?

My nurse is noticeably proud of himself at his part in the great Christmas present plot- giddy is the word that comes to mind.

I smile, wearily, and drift off to sleep.

At 5:30AM, Christmas morning, I am wheeled down to CT for another brain scan. I am barely awake, until, the tech repeatedly slams my hospital bed into doorways, the elevator, the walls. The poor woman does not know how to drive the hospital bed. The nurse who escorts us down to CT is kind, and very, very chatty. "Where are you from, originally?" he asks. I mutter some sort of response- it is, after all, 5:30 in the morning. He is at the end of his shift, and wide awake. "Oh, I've never been to Oregon! I've been to Washington. I've always wanted to go to Oregon. Do you have a large family? Wow, three girls! You must be busy!" And on and on. He is so sweet, and so earnest. Bang. The young tech bumps the hospital bed into yet another wall. Even the chatty, kind nurse grimaces with me. "Merry Christmas," the CT techs say to me kindly, from underneath their Santa hats, as we arrive in the radiology wing of the hospital.

I swear that I am in some sort of holiday nightmare.

The tree, the presents, the bright-ass yellow socks, and the ugly sweater vests and sharp needles. Santa hats and truffles and IVs and hospital gowns.

My phone buzzes at 7AM. I must have fallen asleep, after the 5:30AM scan. I feel like a newborn- my days and nights are all mixed up.

It's my husband. And I realize, for the fourth or fifth time already, since I've essentially been up all night- It's Christmas morning.

I FaceTime with my husband, and watch the kids open all of the presents, that I had thankfully purchased two weeks earlier. I cry silently as I watch my kids, and hope that they are too wrapped up in all of the excitement to notice.

We were supposed to be in Oregon for Christmas- well that was the plan, originally. "No altitude for you, no extensive travel, and no travel to anywhere that is far from a major medical center," one of my doctors had told me last week. Thank goodness I bought all these presents weeks ago, I think to myself as I watch the kids open their gifts, via my tiny phone screen.

I am learning that gratitude can often taste bittersweet, just like the shiny foil wrapped truffle that my nurse brings to me, and sets gently on my hospital bedside table.

I smile at my nurse, grateful for her kindness. I wipe the tears from my eyes, and smile at my youngest daughter through my tiny phone screen, as she holds up her doll for me to see, chattering brightly about all of her Christmas gifts.

Crappy holidays. And, a very merry Christmas, indeed.