Living With Polio
“Promoting Positive Solutions,” Post-Polio Health, Volume 29, Number 2, Spring 2013
Question: I am a 62-year-old happily married mother of two. I have a history of bulbar polio and have started speech therapy for new swallowing difficulties and problems with vocal endurance. Thus far, I have been able to adjust to every change brought on by post-polio syndrome, but this new change is really hard for me.
My speech therapist is instructing me to “conserve my speech.” I am known in my friend and family circle as an outgoing person and a gifted conversationalist. I have been feeling great loss for not being able to be spontaneous verbally. I know the strategies will help in conserving my voice, but I am stuck in grief. Any thoughts?
Response from Rhoda Olkin, PhD:
Before we deal with potential loss, let us consider what might be happening regarding swallowing and vocal endurance. You mention your speech therapist, and I am not clear what training that implies, whether that person is a medical doctor or someone trained in correcting speech problems. If that person is not an MD, I strongly advise you to seek a consultation with an otolaryngologist, i.e., an ear -nose-throat doctor.
My rationale is twofold. First, to be told to make a major life change such as conserving speech should depend on a thorough evaluation of the problem and any possible remedies, and I would want more than one opinion and at least one of those to come from someone who had examined my apparatus and could give me a cogent explanation of the problem.
Second, it is too easy to ascribe everything to polio.
I went through about five years of thinking I was having swallowing problems – my throat seemed to seize up sometimes when eating, especially when fatigued. I went to an otolaryngologist, who was able to look down my throat (through the nose and down – really, really, really not as bad as it sounds!) and demonstrate that everything was functioning. She even had me eat dry crackers in front of her and show her what was happening as I swallowed and talked. Turns out nothing was wrong. I therefore learned to relabel swallowing difficulties as anxiety, eat slower and relax a bit more.
Regarding speech, I do lose my voice easily, but I teach, so I certainly cannot talk less. What I do is take short speech breaks about every 15 minutes (I ask students a question), and use a microphone when talking to more than about 10 people, so I don’t have to raise my voice to project. I certainly talk as much as I ever did. And yes, sometimes my voice gets raspy and I am quiet for a bit, but by then probably everyone is sick of hearing me anyway! So consider (a) investigating the issue further; (b) using a microphone as needed; (c) going about your life the same as ever.
Okay, so suppose you investigate further and it does become clear that you have to “conserve speech.” As much as I doubt that this is necessary, it is worth considering how to tolerate and manage any major life changes brought by aging and disability, because if it isn’t speech, it might be something else. You say you are “stuck in grief.” Are you perhaps thinking this is a necessary stage towards the mythical ideal of acceptance? Because it isn’t.
If you are experiencing grief, you need to make sure it is not depression, because depression is very treatable. I do think grief and loss are parts of the process of living with polio, because over time our abilities change and we have to shed some beloved activities. These activities have to be replaced with equally beloved activities. Speech might take second place to writing, for example. Communication is the goal, and there are myriad ways to communicate these days (email, texting, Facebook, Twitter, etc.). So reducing speech does not equal reduction in communication.