A couple of years ago, I started noticing changes in my hearing. When it came time for my yearly physical exam, I asked my doctor about sending me to an ENT and also to an allergist, since I have yet to find a season to which I am not allergic in North Carolina. His nurse practitioner said she would make the appointments. That never happened. Midway through the next year, my allergies got so bad that I had trouble swallowing at times — lots of times — so when I went back to the doctor I made the same request a bit more emphatically and ended up with two appointments, or should I say dis-appointments. First, neither of them knew I was coming. Second, the ENT was efficient to the point of not dealing with my problem. At the very end of the time I asked about the hearing test and she said, “Sure,” and shuffled me off to a room with headphones and when the fifteen minute test was over they started talking to me about spending $4000 on hearing aids.
I said I would get back to them.
The point of going to see the allergist, at least as I understood it, was to get tested so I could understand more of what was going on and to find out why I was having such trouble swallowing. He, too, had no idea I was coming. He didn’t do the testing, other than to scratch a couple of times and tell me I was allergic to dust mites. Then he started talking about coming for allergy shots, which provided him a steady income but didn’t offer me much of a solution. I asked about my throat and he said he didn’t have the equipment to look at it and that it didn’t have anything to do with allergies. When I asked why red lines showed up on my skin when he scratched me he said, “You’re very allergic.” He didn’t seem concerned about what I was allergic to, but he did write me a prescription and offered to see me again.
I turned down the latter offer, started taking the pills and my throat loosened up.
Last week I went back to my doctor for my physical and he asked how the referrals had gone. No one had told him. I recounted my stories and said, “I guess I was mistaken to think that when you used the verb ‘refer’ that meant you would actually talk to each other.”
He smiled sheepishly and said, “That’s the way it’s supposed to work.”
I then went on to say two years had passed and I still didn’t understand what was happening to my hearing. Since then, things have gotten worse. Higher frequencies are harder and harder for me to hear. When it gets quiet, I hear white noise that sounds like little bagpipes playing inside my head, and playing the way my father-in-law Reuben used to whistle: without any coherent melody. I needed someone that would pay attention. Someone that would act like I mattered more than my copayment. He then spoke of a doctor at Duke who is tops in her field and could help me find some answers. His nurse came in, picked up the phone, and made me an appointment. I wanted to ask why they had waited two years to play out the scene. I chose, instead, to say nothing and hope for a different experience.
This morning, I went to the Audiology Clinic at Duke. When the woman came in to do my hearing test, she asked me what was going on. I told my story and then said, “It may be that what I need are hearing aids. First, I need someone to listen to me.”
And she did.
What took fifteen minutes at the other clinic took an hour today. She did four or five different tests and then explained what she had found. I have greater than average hearing loss for my age. Hearing aids are probably what I need, but she wanted me to see the doctor first. She was also attentive and clear. I go back for follow ups next week. The best part of today was I left feeling heard.
As the audiologist was explaining about hearing aids, she said, “You are actually at an easier age to learn how to use hearing aids because your brain can still recall what it feels like to hear.” Part of the reason for the bagpipes, it seems, is the brain makes noise to fill in the lost frequencies. When the sounds show up again, the brain has to remember what to do with them and it can be disconcerting, if not down right uncomfortable. “You will need to wear them all day everyday until your brain makes room for the sounds again. You’re going to hear better, but it’s going to be hard work.”
And it’s work I’m willing to do. If I don’t want to spend the rest of my life saying, “What?” or letting stuff go by, I will need to do the work to open my brain to sounds it has forgotten and to get over my vanity of having little battery packs behind my ears without any hair to hide them. I’m not going to be healed; I am going to be helped. That will have to be enough. I am motivated, in part, by the ears of the audiologist and the doctor who worked hard to listen today. How I wish they were not the exceptions in my experience in American health care.