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. 

The Power of Stories

Yesterday, Eric and I were fortunate enough to take part of a panel on stroke education led by a neurologist with OhioHealth at the Go Red for Women Luncheon in Columbus and I was left with some amazing inspirational stories from some amazing women. I met one particular woman named, Christina, and we both agreed that our stories were so similar that it was like looking at each other in the mirror: we are both about the same age, we were newly married at the time of our strokes, we both have multiple kids, we both got our strokes from a dissection from our carotid artery, and we both have similar physical after effects. (She's an extremely strong woman, though because she had not just one stroke, but FOUR strokes). We spoke after the luncheon when I learned how similar our lives were, and when we were parting and I lent my hand to shake, she hugged me. That is what sharing stories is about, and it is exactly why we need to share our stories. 

We all have a story and we all need validation with our stories. Every time I talk to others about their stroke stories in the two separate support groups, I’m invariably left with comments like, “I know, me too!” or “I know, isn’t it weird?” or “Wow, that sounds just like me!” These are the kind of things that doctors will never be able to tell you and what you really should expect. It’s the community that will really help you to recover, whatever life events you have. When I was a new mother, and the blogging craze started, there were thousands of “mommy bloggers” cropping up all over the internet. I found myself at the time loving the authentic exchanges from other mothers who were writing about all of the same things. Obviously, the topic of motherhood is not a new thing, but talking and writing about it in such a global sense gave a level of sanity that we needed. So whether it’s an illness, or whatever life event you are experience, it’s these stories that help us to recover and clearly there are thousands of them out there. 

We relayed the story of my stroke to the audience at the panel (Eric spoke unbelievably well!) with candor and knowledge, the only way we knew. Eric and I have always thought that we have a “helluva story” about our lives in the last 2 years, and maybe we do. But you know what? There’s another “helluva story” out there in just the next town over. Find them, and you have struck gold for your recovery.

Somedays it's a lonely place

Two weeks ago, I had the kind of day that reminded me of very real and certain things: one, my body is not 20 years old anymore, and two, my stroke really bit me in the ass. It can be easy to forgot how much energy our brains need to do all the daily tasks that we are asking ourselves. One day not too long ago, I was telling a friend that I was feeling really tired. I was feeling the kind of tired that I could just get into bed and be there for days and I had been feeling fatigued like that for several days. And then she replied in her sarcastic tone that I love and said, “Well, hello, you had a stroke, of course you’re tired!” (We should all have a good friend like that who brings us back to reality). We continued to talk about the concept of fatigue about how even small traumatic events can, as I said, bite us in the ass.

So, two years later I’m still battling fatigue and still trying to figure out how to manage it. Two weeks ago, that week my energy level was pretty good so I went to the gym 4 days, got a lot of things around the house, and was happy with some personal work. The following week, my brain was toast. On the Tuesday morning after President’s Day, after the kids were all on their way to school at 8, I went back to bed and slept until 10:30. Subsequently, I laid in bed for another 30 minutes, made some breakfast, rested for another 30 minutes, took a shower, got dressed and it was almost 1 in the afternoon until my day really started. Before you start to feel jealous, don’t. 

I don’t know why it took me so long to realize this, or perhaps I was still in denial with several things, but I’m pretty sure I know exactly what keeps me tired: it’s my aphasia. 

I feel like it would be totally appropriate to interrupt right now with something inspired by an old political slogan by saying, “It’s the aphasia, stupid.” Proceed....

And what actually is aphasia? Aphasia is a result of a stroke or brain injury, and affects a person's ability to communicate. If you have aphasia, you may find it hard to talk, listen/understand others when they speak, read, write, use numbers and do calculations. And for me, in addition to all that, decisions are hard and multi-tasking are almost physically impossible for me. For instance, it is almost impossible for me to write and listen to something like music, television or voices at the same time. Before you start to say, “well, I can’t multi-task either,” either you have aphasia yourself, or you have no idea what I’m talking about. Noise literally hurts. Or, “well, I have terrible grammar, too,” it’s completely different from saying that you are prone to typos. Words literally change from what is in my head to what I end up writing. For one example, in my head I will want to use the word “specifically”, but then writing it, I will write the word “necessity.” Another example is that I will speak a word aloud and I have no idea for the life of me how to spell it. And it can be a little, normal word like “such” and it would take me a few minutes to say the word over and over again until I remember how to spell that. It’s strange how your brain works - long, complicated words are so much more easier to work with than all the little words.

Just like the fatigue, I’m trying to manage and work around all those communication limitations. Obviously I am reading and writing and speaking on a daily basis, but what has changed about it all is that communication was previously so commonplace, so freely granted like water and air, a very important core of what makes us human. Everyone needs to communicate. So, something that used to be so commonplace isn’t anymore. What it is now is truly an investment or a decision. Believe it or not, that’s been hard for me to realize and to exercise it. Because I still want to communicate like I used to - speak when I want, speak and listen like everyone else, and compete at everyone else’s pace. I don’t want to take the time to read an article for 30 minutes when it used to take 15. I don’t want to have to constantly fish for the right word while writing or speaking, I just want it to be there. I just don’t it to be there. 

I invested my time and energy to write this essay so that people would not take pity on me about the stroke, but because I have to physically write things down to help resolve problems and I’m hoping that I can help other readers that are struggling with the same issues. For a long time when I would tell people that I had “issues” from the stroke, I never used the term that I had “Aphasia”. And one day it finally dawned on me that I should use the right term because using the right term is closer to the acceptance. 

And denial is a river in Egypt, right? Rrrriiiiight.

So it brings me back to my lovely friend who so wickedly and wonderfully brought me back down to reality. The aphasia can be a really lonely place somedays and I have been terribly pissed off about it. Just like my friend reminded me that I had a stroke, here’s my own personal acceptance of reality - I have aphasia and it may or may not go away. I may be like this for the rest of my life. 

Woof. What a big bite.