Friday, February 17, 2017


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.

Friday, February 10, 2017

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.

Saturday, January 14, 2017

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.