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.

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