I’m a pretty healthy person. Sure, I get headaches and the flu from time to time, but for the most part, I’m a healthy young-ish adult. I don’t really have much personal experience with a chronic illness or disability. Sometimes this feels like a liability, not knowing firsthand what it’s like to be an older adult or a caregiver for someone with long-term health problems. That’s why I am grateful for the glimpses into the experiences shared by so many of my clients.
Glimpses like the one I’m having now.
I’m not allowed to sing.
This is a pretty big deal for a person who sings for a living and sings for enjoyment. Here’s what happened: I picked up a cold or something from my daughter a while back, then fall allergy season hit with full force. I got past the sniffle-sneezy-cough-cough-cough part of it all, but I still had a bit of a sore throat. Actually, I had throat pain, especially when singing, and especially on those days when I spend several hours singing and making music with clients.
I’ve heard from other music therapists about how crucial it is to take care of vocal problems immediately, so I made arrangements to see an otolaryngologist, also known as an ear, nose and throat physician, or “ENT.” I couldn’t get in for a week and a half, though, and admittedly, I pretty much kept going along as normal. I saw the ENT last Monday, who looked at my vocal cords with a fiber optic scope. They were red and swollen, indicating that there was a problem that could get much worse if I did not take action. My doctor gave me a prescription and told me that until our next appointment, I would not be allowed to sing. I could speak at a normal tone, as long as I avoided overuse. (The way he put it: “don’t defend a dissertation in the next two weeks.”)
As of today, I have been not-singing for over a week. I’ve cancelled several sessions to keep my workload down, and I’ve gotten creative with recorded and instrumental music in other sessions. I’m finished with my medication and am waiting for my appointment with the ENT next Monday. In the meantime, I am waiting, avoiding places where I would most want/need to sing and talk, and hoping that this time is healing my throat.
I’m also doing a lot of thinking and reflecting on what this experience has to teach me, and I am seeing some similarities with what I hear clients and families talking about. Do any of these match your experience?
Reluctance to see a doctor. I didn’t wait too long to schedule an appointment, but I was definitely not looking forward to the appointment. I was kind of afraid of what he would say. I’ve heard these same feelings of reluctance from people who suspect Alzheimer’s but don’t want to deal with the ramifications of that diagnosis.
Relief at seeing the doctor. Mixed in with that reluctance was some relief at labeling the problem and being given a course of action to follow. This may be similar to the relief you might feel at getting an explanation for the strange behaviors a loved one has been having, or being given a prescription to help with symptoms.
Denial until “the doctor said so.” Even though I knew I should probably put myself on vocal rest, I didn’t really do it until the doctor said I had to. Then it was a relief to be able to say, “my doctor has me on vocal rest” when I started feeling guilty about not being able to keep up with business as usual. This reminds me of folks who don’t retire from driving until a doctor finally says, “you have to stop driving,” or family members who don’t start looking for assisted living or skilled nursing facilities until a professional says they really have to.
Difficulty following instructions. Health care professionals tend to sigh when talking about high rates of “non-compliance,” but sometimes those instructions are really hard to follow. I’m supposed to not-sing and use my voice as little as possible otherwise. For me, that’s much easier said than done. For you or your loved one, maybe the instructions that are hard to follow are taking the right pills at the right times, or changing your breakfast routine from bacon and eggs to oatmeal, or not crossing your legs after a hip replacement.
Frustration at communication limitations. I can’t holler down the stairs for my husband. I can’t sing “Twinkle, Twinkle Little Star” to my daughter at bedtime. I can’t call the dog in from the back yard. These seem like such small things until they’re gone. This makes me think of my clients with dementia who struggle to find the right words or my stroke survivor friends who have aphasia. (P.S. For an amazing portrayal of aphasia, check out this short film.)
Fear about the future. I was going to write “anxiety,” but really, it’s closer to fear. I’m afraid that I’ll have to change the way I work and interact with others, that I won’t be able to get back to normal. I don’t even know how rational my fears are. This is how many of my clients and families feel upon getting that diagnosis of Parkinson’s disease or “probable Alzheimer’s disease,” or after a stroke or traumatic brain injury.
Feelings of gratitude. Despite my fear and anxiety, I am grateful. I am grateful that the ENT has the technology to look at my vocal cords (right there in the office!) and tell me what to do. I am grateful for all of my clients who understand my need to slow down, reschedule, and/or do music in different ways than usual. I am also grateful that this problem is relatively small, that we caught it soon, that it doesn’t change who I am or what I am capable of doing in the long run. I see these same feelings of gratitude among folks who seem to have every right to be ungrateful, as a loved one’s abilities deteriorate, or their disease causes personality changes, or they seem to be in their last few days of life. It’s fascinating that we can hold all of these feelings at the same time and still be whole.
Mostly, I am grateful for this tiny glimpse into how life might be for some of the folks I care for. Being able to grow in empathy – that’s a gift in itself.