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. 

Photograph of the Week

THE AMERICAN SUBURBAN LANDSCAPE

Underneath every roof a story is told. 

Taken by: iPhone 5s

Location: Worthington, Ohio

Apps used: Mextures, Stackables, Snapseed