Admission

Every year, the month of May is Stroke Awareness Month. And it seems that there is a month dedicated to every disease out there with ribbons and stuff and so it can be annoying and here I am annoying you with a new essay from me about, you guessed it, stroke.

But… before you click onto the next post about puppies or babies, which admittedly are much more cute than strokes, please keep reading. Read on, because I want to give you the best PSA you will ever get about being young and having strokes. Because strokes aren't just for the old fogies, yo. When everything happened to me, I was 41 and completely ignorant of the symptoms of stroke. There is a drug called tPA and tPA works by dissolving the clot and improving blood flow to the part of the brain being deprived of blood flow. If I had known about stroke symptoms before November 9, 2012, my recovery would have likely been very different. So please, read on, not for pity but for knowledge.

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ADMISSION

It was mid-morning, Friday, November 9, 2012. I was still wallowing under the sheets when the heavens slapped me with a streak of sunbeam on my face beckoning me to get up. I knew it was about time for me to get out of bed but the sheets were warm and the sickness had been going on for 2 weeks then, transforming my once sanctuary of a bedroom into an infirmary. But soon the situation would change. No longer living in ignorance, the mysterious affliction would be given a name. And the name would change me forever, kidnapping me from that bliss of an unconscious life to an overdue time of reckoning. 

  I had yet to feel the temperature outside that morning, but peeking through the window I saw the trees sway as the technicolor leaves danced in the wind, so I imagined it was crisp and cold. The sky was sunny and bright and inviting, so for all intents and purposes, the day should have been a fine day to be productive. But, I was unable to rid the pounding in my head. No reason to get out of bed that morning I argued, figuratively and literally. I had several real and invented problems at the time but the throbbing, stabbing, heavy head was not an invention.
 
   The problem with my heavy head was that I had fallen down the stairs thirteen days prior and the accident left me with an extremely painful and lingering headache. I was told by an emergency doctor that I had sustained a concussion and the hospital sent me on my way with prescriptions for both a painkiller and a muscle relaxant. And so I waited for days for the headache to get better. 

Left to face yet another day of pain, I had little options other than perusing the television channels for entertainment. My husband, Eric, had been in his basement office for most of the morning, and the kids had been in school since 8 o’clock. Aside from the snoring cat on my bed and the low volume of an old movie, the house was pleasingly still when it finally happened.    

With no thematic movie music to signal that the moments ahead would be more exceptional than the moments before, my right arm inexplicably went limp and fell on the mattress. I looked at the right hand on my lap, so completely conspicuous from the left, and it had been rendered lifeless, spiritless, without sensation and feeling like nothing but a cold piece of meat. I picked up my wrist with my left hand and the fingers hung like dead, dangling tentacles.

In a desperate attempt, with my left hand I violently shook my right arm trying to bring my right side back to life. How many minutes I violently shook it, I do not know. Five minutes? Ten minutes? 30? My memory is blotchy. Whatever the amount of time it was, the sensation finally came back, but it was not the same. My body was no longer one, envisioning that it was cut right down the middle, connected only by faulty wiring. Even though my anxiety lessened, the moment was almost too much to bear.

  The moment was scary and surreal. I put it back into my mind like it had been a dream and with good defense mechanisms for denial it seemed inconsequential to tell anyone what I had just seen or to bring me to the hospital. I didn’t want to scrutinize the reasons or sound an alarm but I knew something was probably wrong. Really wrong. Did I want to know that something wrong happened there, or should I keep it to myself and move on? Accepting it or doing something about it needed courage but I could not muster it. I rearranged the pillows that rested on the headboard and continued to watch the rest of the movie. 

Denial is a powerful thing.

And so later in the afternoon when my speech slurred, Eric read that the possible side effects from the muscle relaxant was slurred speech. It made total sense to us. So I continued to stay in bed, hardly interacting with anyone into the early evening until my stepson, Henry, came into my room to say goodbye. He was leaving for his mother’s house for the weekend and as he left he said, “You sound kind of strange.” He was annunciating something that I was already saying to myself.  

The evening came in quickly and all I wanted to do was sleep so with no announcement to anyone, I slept. That night was the first night that I did not tuck my six-year-old son to bed. There were no kisses, no hugs, no I love yous, no alarm clocks, no clean teeth. 

I have no idea what time I fell asleep that night. 

The next morning, I got up very early and immediately showered. At that point, I still hadn’t mentioned the paralysis to anyone, including Eric. As I showered, the warm water stung my skin on my right side like prickles from a cactus. Suddenly, I felt a new sense of urgency. Suddenly, something was undoubtedly wrong. 

Suddenly, fear gripped me. 

After my quick shower, Eric had woken and went downstairs. I grabbed my robe, went downstairs and met him at the kitchen table. I stood against it, grabbed a pen and tried to write something. The result was pure gibberish. I wasn’t able to put down anything logical, or even illogical, on the paper. Since last night I was already suspicious about my ability to write because someone had texted me and I wasn’t able to text them back.

“I can’t write,” I slurred.  “Something is wrong. I can’t write.”

It was at that time that we both agreed it was time to go to the hospital again. 

If incoherent speech, brief paralysis and broken cognitive skills don’t give you a hint to go to the hospital, than what does? I thought, how stupid of me that I hadn't gone to the hospital sooner!

    Denial is a powerful thing.

With a methodical scurry, we all got dressed, got in the car and drove to the nearest hospital. For me it was a confusing trip, fraught with extreme trepidation. And the longer Eric drove, the more I convinced myself that I was surely dying. I thought of my guileless young sons in the backseat, and my soul melted with guilt, positively certain that whatever I was dying of, I did this to myself.

I needed to be a better mom.
I needed to be healthier.
I needed to be a better person.
I bargained with God by saying my Act of Contrition. 

After the longest 15 minute car ride in my life, we arrived at the emergency room. At the reception desk, I couldn’t provide my full name, so Eric took over the conversation for me and gave them some particulars about how I had been feeling and for how long and so on and so on. Hearing my symptoms, we were whisked into the emergency room immediately. At that point, I definitely was scared. But scared of what?

After a few minutes in an examination room to get personal information, health insurance cards, and vital signs, I was rolled into a CT scan room. I had just been at the emergency room for a scan one week earlier because of my fall, so the scene felt like deja vu. When the whooshing noise of the scan became louder and the red lasers rotated around my head, I looked upward, sighed, closed my eyes and prayed. 

Back in the examination room after they completed the scan, we all waited for news. I don’t remember how long we were waiting, in fact, I really don’t remember what we were even doing or talking about. I don’t remember wanting to talk about anything at all. I was in my thoughts, in my mistakes, and in my regrets, thinking about the year that had transpired and how life can turn on a dime. Eric and I were just married in January of that year, full of passion and good intentions with a new blended family of seven, and then found ourselves in the middle of our fair share of bad decisions and happenstance - unemployment, financial distress, and the perplexing affliction. The once lush lawn of our new home was spiraling into mud and I spent days and weeks in despair. But the desperation didn’t seem to matter anymore. In that room my eyes were fixed on the bright, fluorescent overhead light. I tried not to blink so that I could take the moment in as much as possible. In the light I saw a collage of good things - laughter, kisses, places, dreams, plans, everything that was going to happen, everything that I had forgotten.

I was already mourning them all.

When brought back to reality by the sound of a doorknob, my destiny finally revealed its bad hand. A doctor opened the examination room with determination and with a somewhat anticlimactic tone he said, “Well... you’ve had a stroke.” 

At least I know what I’m scared of now. At least it has a name. 


(Left: picture of my brain after stroke with visible black holes in the center)

Let Them Eat Cake

On the way home from the gym this morning, sweaty and feeling euphoric from my 30 minute workout on the treadmill, it occurred to me that today I should have cake. I should have cake because today is the day 3 years ago my whole life changed and I should celebrate it. 

Today is the day that I couldn’t say my name,
Today is the day that I couldn’t read, write, and 
Today is the day that my right side inexplicably went completely numb.
And today is the same kind of day -- crisp, cool, sunny, unexceptional -- the same kind of November day that I had a stroke. 

Over the last 3 years I’ve spent somedays finding myself ready to “move on”, accepting the imperfect future a brain injury provides, but I’ve also spent plenty of time wallowing in my self-pity, pissed off that I’ll never be the same Kate again and that I lost months, even years, re-learning things that I already learned in elementary school. Going through this whole experience it seems that it would be the right time to weave some sappy, histrionic phrase from quote.com to illustrate that I’ve attained some kind of nirvana after all the anguish, but that’s not really life. Rarely are things so buttoned-up. And was it all that bad? 

In my experience I’ve met so many extraordinary people that have triumphed over tragedy after the wake of their strokes. I’ve met people that are not able to walk, people that aren’t able to talk, people that aren’t able to write, read or even remember what they did yesterday. I’m amazed by peoples’ will to live, their ability to defy the odds are heroic. And so today they get cake, too.

This has been an extremely emotional journey in the last 3 years, but I’m so grateful that I’ve met so many wonderful healthcare providers, stroke survivors, and caregivers, and I wouldn’t have been able to go through it all without them. I’m still working through all of this, I still have some physical limitations to work on, but again, it is better and it’s not so bad.

But whether or not it is, I don’t care, I will think about it tomorrow. Because today we all get cake. 

What I Did On My Summer Vacation

I guess since it’s the first day of school, it would be a good time to reminisce about our summer vacation. And it would be a perfect day for me to be really sappy and depressed as they walk away to their respective schools, wiping tears from my cheeks bemoaning how quickly time goes. And when they leave, I could be, in an instant, lying on the carpet of the living room in a fetal position hating the eery silence. But really, let’s take a minute here - have I turned into THAT kind of mother??

Sadly... yes. (maybe)

A (not so) long time ago in a galaxy (not too) far far away, I’ve reacted to the August school bell ring like Pavlov’s dog, immediately relishing my “me” time by either going to the pool, making some art, taking a nap, dancing in every room, you know, whatever the mood takes me. It’s only been 3 years now that I’ve been staying home with the kids, because honestly, when I was a working mother summer vacation didn’t really change my life other than changing my daycare needs. On the first day of school, and the day before that, I was still going to work within my own routine. So now as a stay at home mother, the end of summer vacation materializes with more intense emotion. And I already miss it.

Don’t get me wrong, I absolutely love the routine and stability that school gives. School allows me to count on getting some of those enjoyable hours that I need (pool time, art making, napping, dancing, etc). Usually the equation in my life was always like this: 

But what changed in my equation this year was that I actually was able to do some of those enjoyable things with the kids AT HOME. Hmmm. Who would ever think? So that time of my life, (that time that my mother told me that one day those kids aren’t going to be kids anymore so enjoy them) yes, that time is slowly coming into fruition now. Everyone is getting older and more independent, not needing me every minute of the day. So, like I mentioned, I could be really sappy and depressed that everybody’s getting older as I age one more year toward my eventual grave, it didn’t take me long to realize (by about noon, but nobody’s taking score) that I really DO enjoy by selfish time and it was probably time for the house to get quiet again. (Case in point: Do you think this essay would ever happened with kids around? Writing is one of those things that absolutely can’t happen with kids at home)

But, I did reminisce a lot today that summer vacation was over because it was definitely one of the best summer vacations I’ve ever had in recent years. I explored at lot with the boys this summer and all of our experiences were in Ohio. (I wish I could say that I have an acute affinity for the 17th state of the union, but it’s because I’m cheap).

I'm proud to say that here is the list of the places we experienced in the last 2 months:

(not in any particular order)

Old Man’s Cave

Bicentennial Park

Inniswood Park

Slate Run Historical Farm

Scioto Audubon Park

Ohio Caverns

Marblehead Lighthouse

Cedar Point

South Bass Island

Peace Memorial

Ohio State Reformatory

Alum Creek Dam

Ohio Theatre

Franklin Park Conservatory

Dawes Aboretum

COSI

Worthington Pools

Magic Mountain

also we ....

kayaked

canoed

rode on a ferry and

oh, I saw a deer come through my backyard

and I read the book, "The Year of Magical Thinking"

The really good news is that while they have to go to school now, the last time I checked the calendar summer is not over because more adventures await. 

After I take a nap.

Going automatic to manual

Recently I was asked to write something about what photography means to me on the Columbus instagram (@igerscolumbus) page. It was kind of a tough assignment, but here is the full essay provided. If you are on Instagram, you will find at @house_of_revelry.

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Lately, I’ve had my own personal renaissance with my vintage cameras and have been shooting film again. I’m getting back to basics with aperture and shutter speed, listening to the beautiful sound of the shutter clicking (and I don’t mean the synthetic shutter sound from the iPhone, I mean like a real camera), and the anticipation and trepidation of going to the lab telling yourself that you’ve probably underexposed the whole roll and see that contrary to what you expected you haven’t underexposed all the whole roll, but Yes! Yes! you’ve produced an amazing roll of art. GO ME!

Now if that preceding paragraph didn’t get you to dust your old cameras and run over to your local lab to buy some film, I don’t know what will. Put your phone down now. Go. Really, I’m serious, go!

But not until you read the rest. :-)

As a hobbyist photographer over the last 20 years, the creative process with a photograph is at best a wonderful work of art that speaks for me when I cannot. A couple of years ago, I took a self portrait and it was ugly and it truly, literally, spoke for me when I couldn’t. Two and a half years ago I suffered a stroke that left me with acute deficiencies with reading, writing and speaking, along with some other less acute deficiencies. While I obviously read, write and speak now, it left me with mild aphasia - an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Re-learning the fundamental skills that were taught in first grade left me extremely humbled. My self portrait said everything that I was trying to say - anger, depression, lack of hope, and wondering when I was ever going to get out of bed again - without saying anything at all. And that is when photography is simply wonderful. It was then that I slowly re-learned how to use a camera, bring them all out of storage, because I really needed that tool back. And I’m still working on it.

Over the years I’ve gone through the process of loving photography and hating photography - it can be my haven and it has been my foe, but lately it’s been my savior. At the onset of the stroke I had brief paralysis on my right side and I can’t imagine if I didn’t have the function of my right hand. I’m very lucky that I am able to do anything at all.

So, whatever the camera you have - challenge it. Go back to the basics. Change your setting from automatic to manual. Photography will thank you by making you a better photographer. 

Now go buy some film! 

The Advocate

There is something very important to know if you find yourself as a patient in a hospital - the most important person in the hospital for you is your “advocate.” 

When I was admitted in the hospital, which was only two other times in my adult life to have my sons delivered, an advocate was a concept that was as familiar to me as Mandarin. And I’m not talking about the kind of advocate that works for causes such as social or racial equality, I’m talking about an advocate in the hospital working for you when you can’t. 

My husband and I collected a long list of errors around the time of my stroke - from the inability to recognize stroke symptoms to going to the emergency room late - and there are lots of essays to write about each one, but the topic of advocacy came up in my last young adult stroke support group.

After the meeting, I immediately thought about the terrible incident I had with a late-shift nurse in the hospital. First, I’d like to say that most people in the medical industry are capable and knowledgeable people who work diligently for their patients. There are also exceptional people in the medical industry and those should, if they have not already, be applauded. And just like any another industry, there are the creeps. 

Possibly I am being too hard on this nurse as I relay her character as a “battleaxe”, but at the time she was the living, breathing problem with my aphasia and I didn’t like it. It was my second night in the hospital and picture the scene, if you will: I’d had a constant, throbbing headache for over 2 weeks, living in a hospital room for the interminable time being, tethered to an IV so every time I needed to urinate I had to bring the whole contraption with me, my taste buds were messed up so I was hardly eating, I couldn’t really read, couldn’t really write, couldn’t really talk, and couldn’t really sleep much so any fortuitous sleep was relished. ALL sleep in a hospital is relished. I was on my own after Eric and my mother left to take care of the kids, and honestly, we all thought that it would be fine leaving me on my own, since the night before I was on my own, too, since Eric needed to take the kids home since kids were really not allowed in ICU. After the ICU, they had transferred me to the stroke wing, but again, we all felt that I would be in good hands with the nurses in the stroke wing. Remember, readers, I am in the “stroke wing.” Remember that. 

It was somewhere between 10 pm and midnight when the nurse woke me up by opening the fluorescent lights above me. It was customary that a nurse would ask me to state my name and birthdate when they check my vitals. I had understood this routine by the second night, but the ICU nurses where pretty lenient on me to say anything at all considering I had limited speaking skills. I would expect that a nurse from a stroke wing would have even more leniency, which left me perplexed when the nurse was shocked that I couldn’t speak my last name or my birthdate, elevating the air of the room into a fever pitch. Since I wasn’t communicating well, she was certain I had undergone another stroke, and it was frustrating the hell out of me that I couldn’t tell her that I was fine. I had even accepted her apology in my head that she had so rudely woken me up if she would’ve just shut the lights and close the room and let me sleep. But she never did understand what I needed. 

If you’ve ever been in a situation that you were being physically constrained without your will, I can only understand the terror. The inability to communicate with that nurse, and everyone else in the world for that matter, left me with a cold and strange vulnerability as the world mocked my feeble attempts of communication; the new peculiar idioms spewing out of my mouth incensed my already growing irritation. That night was the unwelcoming introduction of what would be the rest of my life. It was real terror.

After my senseless words that were left on deaf ears, they readied me to have another CT scan to prove or disprove that I had had another stroke. I watched the flurry around me as they moved the IV, transferred me to a different bed, then rolled me into the hallway on the way to the CT scan room. All the while, jailed in my damaged mind, I just wanted to say my name, Kate Sorenson, and my birthdate is January xx, 19xx. It would’ve just been so much easier, if I was able to say, my name is Kate Sorenson, and my birthdate is January xx, 19xx.

After the CT scan was done, the nurses wheeled me back to my fluorescent room, where I sat awake, looking at a generic painting that would be found in a mall, passing time by pissing all over the world in my head. When battleaxe and the doctor came to my room, they gave me the good news that I had not suffered another stroke, proving that I was right all along that the CT scan would be a fruitless exercise. I sat down on the bed, looked up the ceiling and muttered, “I told you.”

There was no energy for validation though, all I wanted was for everyone to close the lights and let me go to sleep. The next morning I was certain about two things: one, I insisted that I get a new nurse for the upcoming night and two, because I do not suffer humiliation easily I needed to get my speech back fast. I didn’t think I needed an impetus to get my speech back, but the confrontation with the nurse was everything that I needed. Speech was truly devalued before the stroke. 

Going back to the long list of errors that Eric and I had collected, patient advocacy is crucial. We’ve already moved on from the regretful ignorance; but we were in our early 40s and we were patient newbies. Like any other uninformed experiences in life, the only thing that I can take from them are the lessons. 

Patient advocacy is much more important than I realized. With the risk of sounding like a public service announcement, I urge anyone and everyone to make sure that if you are not able to communicate for yourself, that your designated patient advocate have clear communication with hospital staff. 

Awkwardness

I know that I’ve already used this blog for several years and for several reasons, but when I started writing again on here this year, I knew that there were lots of things I wanted to write about, but mostly about the experience of stroke - not just MY stroke, but the experience of stroke itself in hopes to help other stroke survivors. 

There are many topics that I want to write about in a free-flowing way specifically for this site, but some of the topics about the stroke I have already written for my book that I am working on and wanted to share. Rather than re-write a new essay about a particular topic, just as I similarly had posted finished work in a previous post, here is another excerpt from some finished work for the book.

To give you the context, I’ve just started to write chapter 4, which includes the days coming home from the hospital right after the stroke and how strangely the world felt to me. 

Enjoy.

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CHAPTER FOUR

“God may forgive sins, he said, but awkwardness has no forgiveness in heaven or earth.”

- Ralph Waldo Emerson

Coming home to my once familiar place, my skin was singed by the newness, and my gait was hesitant as I walked over the threshold. It wasn’t just the late afternoon sun warming the walls of the living room, a toasty aura was giving life to the rooms in a way I hadn’t remembered. Even the sounds that reverberated seemed unaccustomed to my ears. In previous years and days, I hung the pictures on the walls, I placed the furniture, I bought the house, but was it my house? Like coming home after a vacation, for a few minutes a house feels new again, but that day coming home from the hospital my familiar feelings were completely astray. The only word I could snatch in my mind to describe the circumstance was: awkward. The world had turned completely awkward.

By the time I had come back home from our road trip to the ER there were 5 long days for me to grip the shock of what the damage of my brain had entailed. As I entered into the house, it was the first time I had experienced a physical separation of my surroundings, observing all the comings and goings in the domestic happenings like a spectator. To say that it was an out-of-body experience would lose the point in the rabbit hole of religious fervor, but it certainly was an experience, an experience not particularly in control of my senses. I knew that my welcome home was what I needed to live again but the awkward world looked fresh and new as if I had been transported into another dimension and so I wondered inwardly what parts of my brain were killed from the stroke and those that were newly ignited. 

Walking

Like millions of other folks looking to get fit for the new year, I signed myself up for a new membership at a gym. It had been a few years since I regularly worked out, so it was time to tune up my aging, flaccid bod. 

In the last couple of years I was distinctly damning my stroke for either gaining weight, being out of shape, getting gray hairs and getting more wrinkles. I’ve never been so vain in my whole life. While it is true that a fair percentage of things progressed quickly right after the stroke, stroke or not, they were going to happen anyway because I am now at a point in my life that is called “middle-aged”.

Gulp.

Middle age? Yes, middle age. 

Yuck!

The last time I was at my ob-gyn, I was talking to her about my “interesting” menstrual cycles and asked, “Is that because of the stroke?” She chuckled and said, “No, that has nothing to do with the stroke. It’s pretty normal for your age.”

Excuse me? MY AGE? It has to be from the stroke, right?

Aside from the changes in my brain, it turns out I’m not so unique at all. As I think about my age - 44 - I consider my maternal grandmother: she died a couple weeks shy of her 89th birthday. So, when she was 44 years old in 1957, she was...middle-aged. Assuming I’m banking on my DNA it makes sense that I would consider myself middle-aged.

But how does my body feel? Over the last couple of years I feel like I’ve aged a decade. The fatigue hasn’t helped by making me feel like an old lady and since the stroke, I wasn’t feeling in control of my own body. I felt myself hesitant to swiftly move around, fear of another fall or fear of another dissection. Truly that is a valid fear, but I know that I can’t continue to move so stiff for the rest of my life. Late last year I started walking in a regular basis to move my body again, but of course when it started to get cold, I wasn’t walking anymore. 

So, I’m happy to be back in a gym again but wow, I forgot how sore muscles really feel like. After the first few nights of agony with jimmy-legs that almost propelled myself off the bed, the jimmy-legs have subsided and moving my body on a (somewhat) regular basis is really the ticket I needed to keep moving forward.
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To read more about my exercise after stroke, see the following article, "Walker Recovers One Step at a Time" published on the OhioHealth website as part of the Faces of Heart and Stroke Stories page. Beside my part, there are several inspirational stories.