Improvisation

I met this really cool older woman today at OT rehab, while we were sitting in the waiting room. She had long white hair, bright blue eyes, what looked to be a tie-dye patterned cane, and an older and battered silver walker.

She caught my eye, and we smiled at each other briefly.

And then, she turns to me, leaning across the empty chair between us, and says to me out of nowhere: "How are you feeling?"

It has already been a long day by this point, at 9:54 in the morning, and so I respond: "Oh, okay. Making progress, but worn out, too."

"Yes," she replies. "It's slow, isn't it? And so long, and so much work."

I nod in response. And then she adds: "To be honest, I'm at the screaming stage right now."

I am totally caught off-guard by this sweet looking, bright eyed, tiny older woman's brutal honesty.

And then, without thinking, I reply: "Me, too."

I kinda really like meeting the folks in the waiting room at rehab. The kind-eyed woman got called back to her appointment before I did, and waved at me as she slowly limped away, pausing with her walker for a brief moment.

I hope our appointments overlap again, so we can talk more about all the things. I want to bring sequins and pretty ribbons to dress up her dented walker, or at least a brightly patterned bag to hold her things, like the one that she pointed out to me on another woman's walker. "We learn from each other, you see," she says to me, just before she stands up to leave, "and sometimes we have to improvise. We learn what works. It's hard to know until you've gone through it yourself."

One day at a time, truly. Thankful to have people to scream with, even complete strangers, alongside the laughter and the grit and gratitude as well. Strength for the journey.

Different Strokes for Different Folks

Eight and a half weeks ago, I had my first hemorrhaghic stroke.

I am not even forty years old, so- this was a big surprise. I am a trail runner, a healthy eater, and I am the mom of three young children. Our family loves to hike, camp, bike, swim- we are a very active family. You get the picture.

So again, based on what I knew about strokes and risk factors and age- this was a BIG surprise. Do people my age even have strokes? I was sure that the doctors were mistaken.

And then, a week or so after my first stroke, I had another bleed in my brain, and another stroke. All of these unhappy surprises resulted in a craniotomy, which was just five weeks ago.

But let's get back to the stroke- which is one of the hardest pieces of my recovery right now. I've endured brain bleeds before- cavernomas can sometimes do that, and I have multiple cavernomas, so the odds aren't in my favor. I've been on seizure medications before- understood. I even had a craniotomy in a different location last spring, so I understand that recovery process as well. Brain surgery recovery is long, rocky, jagged- but for me- it is known.

But then- a stroke? This is a whole new ballgame. Aren't I too young to have a stroke? How does one heal from a stroke? Is it true about the magical six month window for rehabilitation? Will I get better? These were my big picture questions for my team of doctors. (Yes, I have a neuro team. They are great doctors, but it's not as cool as it sounds to have a whole team of them- trust me.)

And then, the more specific questions, primarily- WHY DOESN'T MY RIGHT HAND WORK? And then: Why is my vision blurry? Why do I weave when I walk? Will I ever be able to hold an eating utensil that isn't adaptive, and looks like it was designed for a toddler? Will I always feel like I just had my mouth numbed at the dentist, on the right side of the mouth? Do I have food on my face, or did I just drool? (I literally cannot tell, at this point.)

Motor deficits are a new concept, for me, in terms of recovery from a neurological event. And, I really don't like these endless occupational therapy (OT) appointments- the clinicians are so kind, but goodness! The work. Plus- not having clearance to drive yet? How will I even get to my appointments??

Friends- I now have infinite compassion for folks that have to endure OT on a regular basis, because this stuff is grueling and exhausting. Hard. Work.

Imagine- if a part of your body is asleep or not responding to what your brain is telling it to do. And then, a therapist is making you do these repetitive tasks over and over, to strengthen that brain to body connection.

It's like going to a gym for your brain- as if my tired and weary, healing brain is lifting weights, telling my sleeping hand to wake up and cooperate. I can't begin to describe how much mental energy it takes to type or play piano or eat food or button my shirts. Exhausting. It is truly amazing what we take for granted in terms of that connection between our brains and our motor skills.

So as it turns out- I took a test at today's OT appointment, of my typing fluency on a computer keyboard. Mind you- I am also a classical pianist, so keyboards are kind of my thing. My typing fluency is generally rapidfire fast- one of my strengths, for sure.

Today, I learned that I am typing at a third grade level. Honestly- I burst into tears when I saw this. I can adapt day to day at home, and use my left hand when my right hand gets weary- but the actual numbers of my deficits, written out for me on paper, kind of broke my spirit.

My therapist made me a little splint, to use to help my hand strength when I type. She labeled it "fingertips" and "wrist", with arrows, so that I will know which way the damn thing goes on my hand, since my memory is still garbage as well.

Kind of a low point today. 

I also brought a piano score to the appointment, to play for my therapist. And- it turns out that my hand strength is better on a piano keyboard, since I can literally play the piano with my eyes closed...and with familiar pieces, the muscle memory overrides the deficits. Well, for about five minutes, anyway- after which my hand begins to cramp and become weary, and ceases to cooperate. 

But today, my fingers could briefly remember where to go on the piano keys, and I found myself silently thankful for the hours upon hours spent by myself, at home, or in tiny dank practice rooms in the music hall at college, repetitively practicing complex classical piano scores, over and over, until I could practically play the pieces in my sleep.

This repetition, it seems- and even just the innate power of the music itself- will be my strength and my healing.

Of course- the piece that I brought to today's appointment was a simple Bach fugue, one that I have played since the third grade.

It appears that third grade is my new level at all the things. Also funny- my favorite grade to teach, when I taught elementary school.

Oh, irony.

And so, with all of this in mind, this brings me to the beauty and small gratitude of today:

My therapist took me to the resident hall of the rehab hospital, where I attend therapy sessions twice a week. We went to this part of the hospital, a new place for me, to find the only piano on-site- which, mind you, is an ancient, out-of-tune, and quite dilapidated piano. The piano is in the inpatient wing, where patients that need more intensive care and rehabilitation live and receive full-time care.

The room was packed, mostly with elderly patients in wheelchairs, working one-on-one with clinicians. 

And me, at the piano. My therapist sitting next to me, noting the wrist strength and mobility and flexion of my right hand.

I sit down, open the familiar and time-worn piano score, and begin to play.

My therapist falls silent and listens, and I begin to settle into the music. The room gets a little quieter, and the patients seem to notice that I am there, and that there is music. My therapist had told me earlier that the piano is never played- it is a noticeable change to hear music in this somewhat somber and hard working room.

And all of a sudden, an older gentleman in a wheelchair, who was not in the room when I began playing, appears at my side. He awkwardly crashes his wheelchair into the side of the piano, and then the bench. I stop playing. I look up, and give him a small smile.

"Were you playing the piano?" he asks me, somewhat loudly. I see that he is strapped into his wheelchair, and has several brightly colored bands on his right wrist. The yellow band on his right wrist reads "ALLERGY", in bold, black letters.

"Yes, I am playing the piano," I reply.

"Why?" he asks me abruptly- not rudely, but seemingly out of curiosity.

"Oh- I had a few strokes," I say somewhat lightly (and I wonder later: How does one relay this information to a complete stranger, or to anyone, for that matter? I clearly need to work on my response to such questions).

But instead, I toss out this information awkwardly and a bit too breezily, and then- I look into the man's eyes. I note how his eyebrows raise slightly, from behind his bifocal lenses. I look at the wheelchair, suddenly a bit embarrassed, and stammer: "I'm here to practice the piano, to work on getting back the strength in my right hand."

He looks at me, carefully. "But you're so young!" he finally remarks. "I am here for a stroke, too, but I am 74 years old!"

"I know," I reply quietly. "And I'm not even 40 yet."

He pauses for a minute, looking at me, and the piano. I think about what I've just shared with this complete stranger, about my strokes, and my age. I am clearly the youngest patient in the room, by at least thirty years. I think about this gentleman, and his stroke, and the wheelchair and the straps and the brightly colored bands on his wrist.

"Well," he says finally, but with kindness and empathy in his tone: "That is just shit."

I am completely caught off guard- and, honestly, all I can do is laugh. Heartily. "I completely agree, sir," I say to the man. "It is just shit." And then, I add: "For both of us."

He smiles and nods, and I pat his arm. I tell him how nice it was to meet him. He gives me an impish grin, and says: "But don't worry about me, young lady." He pauses to give me a knowing wink, and then whispers somewhat loudly, yet conspiratorially: "I'm breaking out of here today."

I know that he's not breaking out today. But I smile anyway, and wish him good luck. I stand up and carefully step away from the piano, and he slowly turns his wheelchair around and rolls away, back down the quiet hallway.

Strokes are shit. And yet- today I was fortunate enough to play some music for a few minutes, while a somewhat cantankerous and yet kind and elderly stranger in a wheelchair crashed into my borrowed piano, and made my day.

I'll keep going back to outpatient occupational therapy, doing my in-home exercises, and all of this hard work of stroke recovery. I will keep practicing typing, writing these stories on my little laptop, typing at my third grade level and encouraging these fingers to heal. I will keep practicing the piano at home, even if it's just for five happy minutes at a time.

And, I decide- I'm going to keep bringing my piano scores to my therapy appointments.

Hopefully I'll be able to see my new friend soon. Or, maybe I was wrong after all, and maybe he was right- and he will break out of the inpatient stroke rehabilitation wing sooner than I had imagined. Maybe we can swap stories at the outpatient gym instead.

Love and light to all of you out there that are recovering from strokes, whatever your age, and whatever the cause- stroke recovery is challenging and so very hard, or- just shit, as one distinguished older gentleman tells me. Wishing all of us extra endurance, extra patience with ourselves and our deficits and long recovery, and a little extra strength for the journey.

Courage Comes Softly in the Night

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 that 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 be not 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 that 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 eleven days out from my second craniotomy. 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 4AM 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 okay?" they might ask. "How's your pain level?"

I'm embarrassed. It's 4AM. 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 the 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 that I already did the thing, that 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 that 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 that 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, and 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, and sigh deeply, and fall into my first dreamless sleep.

The nightmares have faded since leaving the hospital. The nights 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 that 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 eleven short days. The fear is real. Yet so is 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, and that 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 4AM 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 that my mother purchased at a local pharmacy.

And at 4AM, in my small moments of courage and gratitude, I sigh deeply and am grateful to be alive, and for soft sheets, and 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, and for 4AM chimes, and the memory of a nurse's love, and, for the small courage that sometimes comes softly in the deepest and darkest of nights, in often the most unexpected of ways.

Strength for the journey.

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.

Loose Change and Oven Mitts

My right hand is still a disaster, ever since the stroke.

It's weird- I can still move the fingers, clearly, as I'm still typing. I just can't feel the fingers- specifically, my thumb, my index finger, and most of my middle finger on my right hand. 

I keep shaking my hand, thinking it has fallen asleep- maybe I just need to get the blood moving, and it will wake up. Nothing yet. The hand has been sleeping for twelve days.

Writing keeps me sane, but the typing part of the project is making me insane. Perhaps it is time to research a voice transcription program?

Imagine- I know the word I want to write, and I know how to spell it. My fingers strike the correct keys, but not with the correct pressure, because I can't feel the pads of my fingers. Almost every word has to be deleted and retyped, as I miss striking half of the letters in each word.

For example, just from the word "not", I might only get the "t" out of it. 

Delete, strike, miss, retype, retype, retype.

This whole thing is an exercise in extreme patience, which is not one of my God-given virtues, as anyone who knows me well can attest.

Delete, delete, strike, miss, retype.

My neurologist asks me if I want to do occupational therapy. "I have no idea," I reply helpfully. "Isn't that kind of your call?"

Truth serum. All of these seizure medications have obliterated the last pretend vestiges of any sort of filtering function. I am now a perpetual smart ass. More than usual.

The nice doctor tells me that he doesn't know if there's any point in pursuing occupational therapy, since we are still waiting for brain swelling to recede, and for blood to reabsorb. That, and the fact that my hand still moves- I just can't feel it. The deficit is sensory.

"I'd like you to practice your pincer grasp and dexterity with coins," he tells me. "You know, just use loose change."

"I'm not following," I reply. I am tired and overwhelmed, and I know I've mentioned this too many times- I am very medicated.

"Start with quarters," the doctor explains. "Practice picking them up from the table, using just your thumb and index finger. Move up to nickels. The last will be dimes, which will be the most challenging. Just keep practicing."

Sigh.

I keep dropping things. Invented exercises with loose change are the least of my worries. Knives, full blenders, and steaming cups of coffee are much bigger problems. Catastrophes, really.

I read about stroke recovery, and relearning to use the affected limb. One pamphlet suggests putting an oven mitt on the functional hand, to remind you not to use it, and to force you to use the afflicted hand instead. It's called Modified Constraint-Induced Therapy, or mCIT.

I have some choice words for mCIT, and the theoretical oven mitt. 

Although, I get it- I already want to favor my left hand, so I don't keep dropping and spilling everything. The idea is that the function in the afflicted hand will atrophy, if you don't use it. I am supposed to keep using this sleeping right hand, even though it continues to make more work for me, and infinitely more messes.

In this current state- I am messier than any of my three kids. Truly.

My dog, on the other hand, seems to be a huge fan of mCIT, since it vastly increases his chances of table scraps. I have taken to crouching over my dinner, reminiscent of a caricature of a caveman, hovering with my fork and my face just inches from the plate, hoping that I will stop spilling just everywhere. The dog is still hopeful.

So- today I sit, with my loose change, and my laptop. Practicing. I pretend that striking the computer keys is also useful, which it probably is. At least I am continuing to use the right hand in some sort of productive manner.

I had asked the doctor about playing the piano as well- which he encourages. I have the same problem that I do with the computer keys though- missing notes. Only I can't retype, when playing the piano.

The music is just not the same.

Deleting in music changes chord structure. Which changes everything.

I've been practicing with the quarters. It's so hard to pick up a thin coin from a table, if you can't feel the coin in the first place.

But, I can even sort of pick up the nickels, if I carefully scoop the coin onto my thumb with the side of my index finger...which of course is cheating, and isn't the point of the exercise. Adaptation, however, is an impressive and useful skill.

I have a lot more respect for stroke survivors, these days. I had no idea- and this is just one sleeping hand.

It was just one stroke. I am still mad that I had a stroke. I hope my hand comes back.

Delete. Strike. Miss.

Dimes are a total loss for now. I'm going to keep practicing.

Strength for the journey.

Vultures

My friend and I were joking yesterday about tattoos.

For some reason, it felt really important to get a tattoo before my last surgery. Something that I could physically see or hold onto- something with predictability or permanence, in a life that felt too unpredictable and chaotic and disordered.

(I should mention that I have been to a tattoo parlor many times, since my sophomore year of college actually, with every intention of getting a tattoo, and have never been able to decide on a design. I have a hard time making decisions. My husband is truly a saint, putting up with this- not the tattoo design part, but just with me in general- you know, indecisive, in life.)

I had this idea of a tattoo of a simple swallow, a bird that has a lot of significance in my life, going back to my childhood. But maybe not even in color, for the tattoo- just the silhouette. And see, swallows mate for life, so there was the tiny part of talking my husband into getting a swallow tattoo as well. We could match. I was thinking on my left wrist. I know- predictable and cliché, but I wanted to be able to see it post-op, as I was laying around recovering.

The turn-around between the January 2016 hemorrhage and the February 2016 surgery was too fast. I mentioned the idea of a tattoo a few times to the medical folks that were preparing me for surgery, and they collectively cautioned that it was not a great idea. "Poor timing- too much risk of infection," they would say. "You'll have to wait until you're completely recovered at this point. Your craniotomy is just too soon."

Well- that was sure depressing. My brain surgery was so soon, that I could't even get a go-be-brave tattoo beforehand, for risk of infection affecting the procedure?

Damn. No brave, committed, mating-for-life birds. Damn, damn, damn, about the whole damn thing.

To be fair, I did wake up with a pretty significant tattoo, above my left eyebrow. The permanent marker, with my surgeon's initials (to mark which side of the head to perform the craniotomy), would fade over time. The angry red scar would eventually begin to fade as well, but it is still always with me- my unplanned tattoo. Permanent disorder, rather than the stability and order, and a sense of control, that I was originally seeking. 

I suppose I got my wish for that tattoo after all, although in a very different way than I originally envisioned.

February 29, 2016- three days post-op- eyebrow incision, left frontal lobe cavernoma resection

And as my pre-surgery bravery project (since I couldn't get that tattoo), working up my courage to go under the knife, I decided instead to cut off my insanely long hair, long golden curls that were down to the middle of my back. Before surgery, my neurosurgeon and I had discussed two different possible types of incisions- behind my hairline (preferred by a lot of people, because of cosmetic reasons, and no facial scarring), and an eyebrow incision, since this particular cavernoma was right on my forehead, above my left eyebrow.

We agreed on the incision behind my hairline, which would require shaving part of my hair, and a lot of staples.

And so, I decided to cut off my hair- thinking it would be a lot easier to have short hair instead of masses of tangled curls while laying around recovering, and, it would be easier to keep it short while growing out the shorn portion.

And honestly- I thought to myself- Cutting my hair will be good practice in working up my courage for this surgery.

Imagine my great surprise, then, when upon waking from the four hour procedure, it turns out that my surgeon had changed course, and had opted for a minimally invasive supraorbital "eyebrow" craniotomy instead.

So now- an eyebrow tattoo, and short hair! Quite a change.

And today? We are now considering craniotomy número dos, a parietal cavernoma resection. 

This is getting so ridiculous.

Which brings me back to my friend and I yesterday, joking again about tattoos.

See, I've kept my hair short since my February surgery. It was easier, and I rather liked it. I cut it even shorter, a pixie cut. I even experimented with color a bit- first very blonde, and then very dark, with red undertones. 

Still here, still being a little bit brave, just with hair color this time.

And then I have this stroke, and the ambulance, and the hospital again, and my neurosurgeon again- "You should take this out." Another potential surgery.

Naturally, like any normal, sane person, my first thought is: Well, maybe I'll have time now to actually get that tattoo!

Except- I've gotten a lot more cynical over the last year. Brain surgery will do that to you. Don't get me wrong- I rely on gratitude, almost every minute of every day, to get by. It's how I survive.

And humor. Dark humor. Lots and lots of humor.

So my friend and I are sitting on my couch, talking about the latest plan for my brain. My friend is a planner, and a medical professional, and she wants to know the plan. I tend to freak out hearing the plan in its entirety, or at least the end of the plan- surgery- so I like to break things into tiny little bite sized pieces. First get scans from hospital. Call UCLA. Send scans to UCLA. See what they say.

That was the end of my plan. I rather liked the end- it helped me breathe a little easier.

But my friend wanted to know all the options- craniotomy here in town at our local hospital, go to UCLA or USC (the big research hospitals), recovery, location, etc.

This got me thinking about the particulars, which makes me freak out a bit. Ok, a lot.

Which got me thinking about my unintentional eyebrow tattoo, and the swallows that mate for life, and really shaving my head this time (a behind the hairline incision for the parietal resection), and how on earth am I going to cope this time, again??

So I stop my friend mid-sentence, and I toss aside her perfectly logical medical plans, and say: "I think I should get a tattoo."

"Only this time," I continue, trying to find some humor in this crazy plan for two craniotomies in one freaking year, "I think I should shave that part of my head now, and get a tattoo on my scalp, for my surgeon to find, once the medical techs shave my head. I'll get the tattoo now, regrow my hair before the procedure, and then it will be like a surprise for the surgeon to find."

My redirecting of the conversation worked. We didn't have to talk about the brain plan any longer. Now it was just laughter about my absurd scalp tattoo, the next bravery project, the way that I might survive the overwhelming fear of this next procedure.

My first suggestion was a flock of vultures.

I thought it would be pretty hilarious for the surgeon to discover a flock of vultures under my hair, circling the site of the intended incision.

My friend and I laughed about the absurdity of just everything, the vultures and brain surgery, for a good five minutes. I even showed her my idea for this blog, with the lovely flock of birds, flying away in the top right-hand corner.

The birds, in my mind, are the vultures.

I told this idea to my mother later that day, and she grimaced. I persisted. Eventually, she gave up, and even began to laugh, contributing ideas to my scalp tattoo scenario.

"How about scissors?" I suggested.

"A saw," countered my mother. This made me laugh. Hard.

"A pirate map, with 'X' marks the spot, so the surgeon knows just where to cut," I reply.

I still like the vultures. My mother thinks this a terrible idea, and rolled her eyes at me to let me know her exact thoughts on the matter of my scalp tattoo.

Maybe I will get the wrist tattoo then, after all. Perhaps something more poetic- a phoenix, rising from the ashes. A dove, wishing me serenity and peace. A swallow, like the graceful diving swallows that my grandfather and I used to watch together when I was a little girl, as we blew downy soft feathers from our hands, which the swallows would use to line their nests in springtime.

Or a flock of vultures, on my left wrist, circling a saw. To signify the absurdity of it all, the humor, and my gratitude for finding a little bit of laughter in my day, at the ridiculousness of a secret scalp tattoo.

Because the reality is- pretty soon I might actually have that scalp tattoo, staples and hardware and all, whether I like it or not.

At least the vultures will still make me smile.