Updated: May 12, 2019
“Handle them carefully, for words have more power than atom bombs.”-Pearl Strachan Hurd
I have always been aware of how significant words can be to others, especially in the Medical field. Working with those suffering from substance use disorder, we focus a lot on the language we use when talking to patients. Saying someone is "clean" from drug use says that before they were something dirty and bad before, and dehumanizes them. Words can convey respect, understanding, and compassion. We discussed this a lot in NP school. Becoming a patient, however, made me truly realize just how critical they are to someone's recovery.
After a month in both hospital and rehab, I got to experience lots of words spoken by medical professionals. I remembered daily how comforting the words Dr. Adler's words were in the ER on Christmas. As I laid in my hospital bed, I had groups of people in and out of my room constantly, presenting my "case" to medical students for learning purposes.
-I was a stroke victim
-I was a right-sided craniectomy
-I was a cerebral venous sinus thrombosis
-I was left sided weakness
-I was blood in my right retina
-I was a difficult blood draw
-I was a fall risk
These were my new titles. And it began to warp my chaotic thoughts into believing that these were the only things I were now. I was a problem to be solved. I was a series of CT scans and MRIs on a computer screen. I was broken, something I often called myself throughout this process. I kept asking Matt if he wanted to still be with someone this broken. He never hesitated saying that he did. I did not feel like a person, instead I felt more like a lab rat at the mercy of being experimented on whenever people pleased.
After I started to get movement back in my left hand, I began to feel hope build inside of me. The nurses who took care of me were overjoyed. I would have nurses constantly coming just to visit me, including ones who no longer were part of my care team but had seen me at my worst in the ICU. They praised my progress with words of encouragement. The second day after I had started moving my hand, neurology did their morning rounds. As I pushed my still weak hand to move as much as it could, I felt a sense of pride knowing that it was moving. As I struggled to wiggle my arm around the bed and reach out to grab something, the doctor's response at the end of the exam was "oh, thats disappointing, that's not good enough." I felt all the air leave my lungs and wanted to cry. Any shred of self-esteem I had managed to gain back was destroyed in a matter of seconds. My nurses were pretty horrified that I was told that because they all knew what my hand and arm had been like a few days prior and they knew I was getting better. They tried to reassure me that I was doing great, and that they all saw how much improvement I was making daily. Instead I would just look down at Gimpy and just think "you're a disappointment, you're not good enough."
I would have this incredibly negative view of myself until I had my two Friends from Ursuline visit me. Lexi and Katie brought me ice cream, a wedding magazine to help me with planning, and we sat chatting and laughing. It was not until I referred to myself as a stroke victim that I got the immediate response "you aren't a victim, you're a survivor Myra." That one word had the power to break through my darkness, even if it was just for a short moment. It had been a rare positive word used to describe me in weeks.
Rehab was slightly better than the hospital, with doctors trying to listen to my complaints and concerns. One day the PA overseeing my case sat down with me for a while and I explained how I felt like no one was really listening to me. He listened that day, prescribing a topical anesthetic to make blood draws more tolerable for my poor overused veins. My other therapists knew I was very motivated to get back home so they gave me more work to do and pushed me hard so that they could help me achieve that goal faster. They listened to me and geared their work to match my goals.
When I returned home, I was so desperate to get back to a sense or normalcy. I had to have another surgery to replace my bone. I continually asked when I could have it, both terrified over the prospect of another surgery and also wanting my hair to grow back as I knew my head would need to be shaved again. I felt like I was drowning in this new existence. Now my new title was HELMET GIRL. I saw it in the eyes of every person who looked at me while I was in public. I wanted to be Myra again. My surgeon, the very one who had battled by my side and saved my life was ready to do it in a matter of weeks. My neurologist and hematologist said that I would have to wait at least 3 months because research states that at least 3 months of blood thinner therapy is the best for the type of clot I had. Now my future was determined by the clot in my neck. I begged them that I just wanted to get it over with, told them what my concerns and feelings were. I was told "I understand, but research states..." I was once again a test subject. I felt like my feelings were not being considered. The small section of my logical brain that would break through the fog of emotions knew that it would be stupid to try and push forward the surgery.
What disturbed me the most was how people told me they were hearing me, but in fact they weren't. I am not one to talk about my feelings openly. But now I was trying to get the attention of my care team, trying to make them realize that I was in fact a person with emotions. I told them that I felt like I was being treated like a series of scans on a screen. My neurologist replied "that's very helpful to hear that insight. It is helpful to have another provider's viewpoint as a patient. It just shows that maybe we need to watch what we say." I stared at her through my tears and felt like screaming DUHHHHHHHH. This concept had never been foreign to me, in fact it was such an obvious thing. It scares me that this is not in the forefront of every provider's mind when interacting with patients.