Since I had been admitted into the hospital I had needed assistance putting on my clothes and most of all taking a shower. After a few days, I could even smell me. You know it’s bad when you start to miss that distinct hospital smell. Lying there unable to move my left side, every daily task was a feat, even trying to put a new blanket on my shivering legs. Never did I imagine this would be my life at 26, two months before my wedding.
The first time that my nurse told me I was going to be taking I shower, my mind was like a Rolodex going through the possibilities of how I was going to do this on my own. As it turned out she was there to help me. They make those bathrooms really big for a reason, I was finding out. I had to sit on a chair because I couldn’t stand up by myself and for safety reasons, everyone there was really big on safety. I was very self-conscious just sitting there naked. I could only wash one side of me due to the fact that my left side wasn’t working. She left me so that I could have a bit of privacy and be alone with my thoughts. Over time, this would be where I would allow myself to become vulnerable and show my emotions. I would have my moment to myself to cry for five minutes each day and let out all of my pain, fear, and frustration for what was happening to me. I would just let the water run down my face and with each time the running water would hit my eyelids, cheekbones, and lips, I would hope that it would move my eyelid back to its rightful spot and loosen the left side of my lips so that it would move again and I could eat a McDonalds Happy Meal.
After about three days of doing this, I could manage to stand by myself with supervision. I would also need someone to help me shampoo my hair. Trying to squeeze the liquid out of the bottle one-handed was tricky. After a while, I got pretty good at washing my hair and face one-handed. I would do this when I was on the neurology floor at a larger hospital I had been shipped to for more tests and then back at the local hospital in my town. I would flip an empty garbage can upside down so that I could put my hair and face supplies on a flat surface while sitting in the shower chair and then would be able to squeeze the liquid on my face or head with no assistance. It let me continue to be independent, which I longed for.
It wasn’t until I returned to the original rural hospital I was at that a turning point happened for me. I lost dignity and never felt more of being “on display” for everyone to see in my life. It was a Saturday morning and I was transitioning into the therapy program where I would have sessions for at least four hours each day. I had a schedule that I had to go by. Up by 7:30 a.m. for my medication and breakfast and therapy sessions starting at 9 a.m. each morning. There was a whiteboard in my room that broke down each of my appointments so I knew what was happening each day and when.
That Saturday morning I saw that I had an occupational therapy (OT) appointment at 9:30 a.m. My nurse and I discussed a plan for showering. She was so kind and made me feel like a person. I told her what I had been doing, that I use both the chair and railing, but I can stand, too. I like to shower by myself, though. For me being a 26-year-old engaged female, this was a big step, as I think it would be for any person losing their independence, which is extremely disappointing and mentally exhausting. She trusted me. She talked to me like a person. We shared jokes and she wasn’t afraid to be blunt with me if need be.
So that morning I started my routine. I got up an hour before my session started, just enough time to shower and get dressed. I remember this was the first morning I put my sweatpants and sweater on by myself. I was smiling from ear to ear. I had never been prouder of myself, almost in tears because of this great accomplishment. It might not have seemed like much to some but to me, it was like I had climbed Mount Everest. Never mind that it took me 20 minutes to dress myself alone, not to mention brush my teeth and make my bed. I was ready for a nap. Every movement was exhausting. It was the fact that I did it myself without the help of someone telling me, “OK, one foot in and now the next foot.” I was taking back my independence, slowly but surely.
However, to my surprise, my dignity was about to be ripped away again. I felt like that accomplishment that I worked so hard for, pulling and tugging trying to find the opening of the sweater, was all for nothing. An OT assistant walked in and introduced herself, saying that the supervising OT on my case instructed her to have me shower in the makeshift apartment they have on the floor. The apartment was used to safely teach people how to get in and out of a bathtub, learn how to cook again using utensils and apparatuses and also safely shower with rails. I told her that I was going to shower after we had our session because I thought we were going to work on my non-working hand. I also told her that I can and have been showering by myself. I use the chair in my bathroom. She said that these were her instructions.
Clearly upset by this, I wondered if I could use my own bathroom, something I would be familiar with and not have to leave my room. She said I had to use the apartment’s shower and if I did not want to complete the session and the task I didn’t have to if I was uncomfortable. I didn’t know what to do. No one had done this before. I thought that this is the process and to get better I have to follow it. I had to trust the process to get better, but didn’t know why the OT didn’t assess my abilities first to see what I could do. Holding back my tears, I wheeled my walker with her down the hall to the apartment’s shower. I looked down the entire time not making eye contact with anyone.
I know that she was just doing her job, but why wasn’t she listening to me or at least get the supervising OT to properly assess me to see my progress and abilities? I felt violated, dirty, even more ashamed. She had to watch me undress and then shower, peeking behind the curtain the whole time, like I had committed a crime. I was so self-conscious. I know this is her job and she is professional, but all that I could think of was that is she judging me looking at my hairy armpits (shaving only one armpit makes no sense) or my purple feet. We made small talk until it was over. I was 26 years old. I feel like at any age this isn’t easy, but there was no second thought as to procedure over compassion or patient care over policy. Doing this assessment in my own room and shower, where I would be showering for the next five weeks, would have made no difference.
Over the progression of the next few weeks, I learned to let things go about being self-conscious about my body. I would be getting dressed and the nurse practitioner would walk in, not seeming to care if I told her to please give me a minute. I know everyone meant well, but respecting privacy and giving people the dignity they deserve goes a long way. The “shower incident” was traumatizing for me, partly because I was hypersensitive and also because I felt I had made a lot of progress to get to the point to be able to get dressed by myself and also shower by myself. Being watched and not trusted to shower again brought me back to a dark place of self-doubt and defeat about my illness. I needed that time in the morning to power through to get in the mindset, to hear myself say, “Katie you can do this, Katie you are strong, Katie you can beat this.” If I didn’t allow myself this time to cry and let out my emotions for five minutes each day then I couldn’t focus on what I needed to do and that was to work on getting better. There was more of a mental component to get through being in the hospital than I ever expected.
Healthcare workers have important jobs that impact patients for the rest of their lives. Their actions and how they present procedures determine how someone mentally can push through their recovery. If you can do anything at all, let patients have as much dignity as possible, whatever that may be. Being naked in front of people you don’t know wasn’t something I had on the top of my bucket list. We rely on your expertise to get through this traumatic experience. Ultimately, this moment will stay with me for the rest of my life. I showered with the door locked for months and continue to do so, in fear that someone is listening in on the other side or wanting to burst in at any moment. I relied on my health care team to make it through my experience; to survive. Showering is a sacred and private act for an individual.
I know that safety concerns and hygiene are a part of any healthcare workers job as well as a big concern for hospitals. I also understood that I had to show a therapist that I was not struggling and they needed to see it for their own eyes. Providing patients with more comfortable settings, like their own bathroom to complete these intimate tasks gives them more dignity and compassion care when they are feeling lost and emotionally overloaded from a diagnosis. Just listening to a patient’s concern over why this must be done, not questioning but educating the importance of the procedure ensures that they feel supported and not blamed or shamed.
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