As some of you know, I was admitted to the hospital 10/30 for a pretty scary MS exacerbation. An experience that I had while in the (first) hospital started me on a journey of reflection about the power of language.
As anyone who has been in the hospital knows, daily visits from occupational and physical therapy are to be expected. That said, the therapists are typically generalists, in that (as it relates to me) they do not specialize in MS. Some know more than others, but I’m always curious about whether or not they’ve worked with people who have MS before. And I ask. During one of my PT visits (again, this was the first hospital — this will be significant later), I casually asked the therapist if he’d worked with MS patients before. His response kind of…shook me. Not because what he said was shocking to me; rather, I was shocked that he lacked enough sensitivity to allow him to respond this way. So the therapist says to me: “Oh yes, I’ve worked with MS patients. It’s a chronic (insert an expression of pity) disease. In fact, I just worked with a patient who couldn’t even move — she couldn’t even feed herself. It’s a terrible disease.”
Okay, several things. 1. How dare you? You don’t know how long I’ve had MS; how do you expect me to react to that morbid characterization?; 2. Further, I asked you a yes or no question; 3. Do you really expect me to be motivated to even do PT after your nightmarish MS description?
Case in point. Language matters.
After about a week in he hospital, I was transferred to the (acute) rehab unit of another hospital. I feel very lucky to be in a place where I am given 3-4 hours of PT and OT a day from a professional and dedicated staff who specialize in rehab, versus a subacute rehabilitation facility (nursing home) with PT staff that often has relatively high turn over — and let’s face it, is an environment not conducive to a 38-year old’s mental and emotional well-being.
Having never been in rehab before, this has been an enlightening (both good and bad) experience.
Allow me to share some of my reflections.
So, I am wearing a Depends in here. It’s both humbling and humiliating. Typically, the staff refers to the Depends as a brief. On one particular day, however, a PCA referred to it as a diaper. More specifically, she informed me that she needed to change my diaper. I’m fairly certain that I do not need to explain how incredibly inappropriate, insulting and disrespectful that was. I directed my concerns to the social worker who directed it to the appropriate supervisor. That said, though, this should never have happened. I am a grown woman — I deserve dignity and respect. Wearing Depends is humiliating enough. Language matters. I encourage folks to take a look at our Emotional Intelligence Tips & listen to Episode 22.
Another thing. Every week, your team (OT, PT, nurses, social workers, etc.) meets to discuss your progress. They discuss cryptic codes that are meant to essentially summarize you and your abilities, and come up with goals for you to work on to get you discharged.
The problem is that the goals aren’t always discussed with the patient (well, mine weren’t/aren’t always), and are often not reflective of an attainable reality. For example — how can I “improve my ability to move in bed” when any assistance I get is to assist in things (moving my stiff legs, sitting up when my back is as stiff as a board) I can’t do because of my MS. It’s kind of a slap in the face. At the very least, it’s frustrating.
Plus, it feels a bit weird to know that a group of people are having a whole closed door meeting about you where you have no opportunity to provide feedback, input or insight to frame the goals designed to help YOU go home.
One more thing. This is not a criticism. These are my reflections. In occupational and physical therapy, you are asked to do things that in your day to day life, you don’t normally do — at least consciously (raising arms above your head and maintaining the position, flexing your ankles up and down — things like that). I totally get why, and have no issue with that. OT is meant to assess and strengthen your functional mobility. It’s therapy.That said, it’s a sad, harsh reminder of the abilities that MS has stolen from me. It’s a lot to process.
We are kept to a pretty rigorous schedule. At around 3 or so, we’re on our own — free to do what we want. For me, that’s meant ruminating on all of my lost functionality. It’s depressing.
I apologize that my thoughts and musings are scattered. I’m still processing.