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.