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.
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.
