Changing roles when I was sick gave me more empathy
I got a glimpse of how frustrating it must be to have difficulty speaking
I had a bad cold last week and am still recovering from it. Apart from concern over my husband, Todd, catching it, because he has ALS, the hardest part was trying to keep up with his caregiving when I was fatigued and needed to rest. Something surprised me, though: For a few days, our roles communicating with healthcare professionals shifted.
Because ALS has affected Todd’s lung strength, I’m usually the one who makes phone calls on his behalf about healthcare, equipment problems, and billing or insurance issues. Todd could make the calls, but his voice is weak, and he doesn’t speak clearly with air from his noninvasive ventilator blowing through his nasal passages. I can speak loudly, and I can push back assertively when necessary. So, over the years, I’ve taken on the role of Todd’s healthcare advocate.
But last Thursday, when the cold settled into my vocal cords, Todd suddenly had the stronger voice.
The timing wasn’t ideal because an assistive technology professional (ATP) from Todd’s wheelchair company was visiting that afternoon to address issues with Todd’s new power wheelchair. Before the technician arrived, I scribbled out everything we needed addressed, including attaching a chest strap, replacing the armrests with longer ones, and reprogramming the attendant control so it functions like Todd’s old one. Over breakfast, I held up the list for Todd to read, and he didn’t have anything else on his radar.
Losing my voice
The ATP arrived and installed the chest strap, and when it seemed like he was gathering his tools to leave, Todd asked about the armrests and reprogramming the attendant control. The ATP said he’d come by another day with longer armrests, but that he wouldn’t be able to reprogram the attendant control at all.
“That doesn’t make sense,” Todd said softly. “It’s just a computer program. It should be like flipping a switch.”
In any case, it wasn’t going to be resolved that day, and the ATP said he’d follow up with the manufacturer’s representative.
Later that afternoon, Todd called the wheelchair manufacturer’s customer support line to get an answer to the programming question. He explained to the representative that he had difficulty speaking and asked for patience. I sat nearby, listening to him carry on the conversation with his ventilator whooshing in and out between short sentences. He handled it fine.
It made me realize I may not need to insert myself into every call or conversation. Some of what I’ve been doing out of habit could probably shift back to him. It’s strange to say that while knowing how limited Todd is physically. But some conversations don’t require the loudest voice, particularly when the other party is willing and able to listen. But that’s not always the case.
Losing my voice gave me more empathy for those times when Todd has complained about people not hearing him. During my laryngitis, there were moments when others asked me to repeat myself, and I simply couldn’t. My throat hurt, and I was tired. Instead of repeating myself, I pointed, used hand gestures, or wrote it down. Sometimes I just shrugged, because it wasn’t worth the effort.
Todd has had that experience countless times. In a group, he’s often drowned out by casual chatter or background noise, and sometimes even chatting one-on-one is difficult when the other person has difficulty hearing.
For a few days, I got a tiny glimpse of how frustrating it must be to have something to say but lack the vocal strength to communicate. But unlike Todd, my hands still work, and I can text. Even then, though, I needed people to be willing to slow down and read what I had written.
By the way, Todd confirmed that the attendant control on his new wheelchair can be reprogrammed, and the ATP verified this with the manufacturer’s representative. Maybe Todd can work with him to schedule another visit.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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