Birding Through Vision and Hearing Challenges

24 11 2011

Martha Steele

This article appeared in Bird Observer Vol.39, No.5, October 2011. Reproduced with kind permission.

This is a personal story about my journey through stages of birding defined by progressive vision loss and hearing challenges. I have Usher syndrome, an inherited disease that combines retinitis pigmentosa (RP) and hearing loss. RP is characterized by a progression of night blindness, increasing peripheral field loss (tunnel vision), and finally central vision loss, all the result of the retina’s rods and cones dying off. The rate of vision loss varies from person to person, with some individuals nearly completely blind by early adulthood while others have some functional central vision for life. Hearing loss seems to be relatively stable in Usher, although some progressive loss occurs.

I was diagnosed with severe hearing loss as a young child and have worn hearing aids since I was about four or five years old. But through my early adult years, I did not realize that I had any significant vision issue. I could not see well at night, but it seemed normal to me until a day in Colombia, South America, where I was teaching at a junior high school. Two friends noticed how often I bumped into things and wondered why.  One friend spread her arms wide apart and gradually brought them closer together, asking me to stare at her face and tell her when I saw her hands out of the corners of my eyes. Her hands were practically touching before I saw them. At that point, we knew something was wrong.

When I returned to the US, I saw an ophthalmologist in my home state of Vermont. He came into the examination room after a series of tests, looked at my retina, sat back, and said, “I think you have retinitis pigmentosa. You will be blind in ten years, so I would advise that you not try to be a truck driver.” Ok, bad news, really bad news (about going blind, not the truck driver part), stunning and devastating actually. That was back in 1977. I learned shortly after his blunt diagnosis that the vision loss would be much more gradual and that I could expect reasonably good central vision for many years.

Fast forward to May 1989. My friend, Martha Vaughan, was leading early morning bird walks in Mount Auburn Cemetery for anyone at our work place in Cambridge who cared to join her. I showed up for one of her walks without binoculars, of course. She had an extra pair. I have a distinct memory of Martha walking through the front gates, and immediately raising her arm to the sky and exclaiming, “A parula!” I didn’t hear the parula nor any other bird, only her and other birders’ excitement at all of the songs filling the early morning air.  However, I saw warblers, lots of warblers, and I was hooked. I asked Martha where I could get binoculars, and I opted for 10 power Zeiss binoculars because I wanted to see as well as possible, given my vision issues.

Early in my birding avocation, I had good central vision, so I could see birds well if I managed to get binoculars on them. But I could not hear most birds due to their high-pitched vocalizations because my hearing loss was particularly acute. A few species, such as Mourning Dove, have lower-pitched vocalizations that I could hear. I always marveled at the ability of birders to identify birds by sound, a totally unimaginable and unreachable experience to me.

Images depicting visual impairments

My birding strategy was to walk behind other birders, waiting until they stopped and raised their binoculars in a certain direction to find what they heard or saw. I stood behind them, looked in the general direction they were looking, and tried to see some movement before bringing the binoculars up to my eyes.

As the years went by, this strategy worked less and less as my vision continued to decline. My peripheral field became more and more narrow, making it increasingly difficult to detect movement of small, distant birds. I tried to contain my frustration at not being able to locate a bird despite everyone’s best attempts to describe where the flitting bird was. I relied more and more on someone, most recently my husband, Bob Stymeist, getting the bird in a scope.

Today, I can’t recognize faces five feet away, never mind a dark bird on a dark branch in a dark understory 25 feet away. Going blind may be one thing for a birder, but it is even more challenging for me because I never could hear the birds either. So why do I bird? The simple answer is that the birds are extraordinarily beautiful and I am constantly profoundly moved by their ability to survive, whether during migrations over thousands of miles or finding habitats sufficient for their needs. I cannot look at a Blackburnian Warbler and not say, “good luck, little fellow” or a Black-throated Blue Warbler and not marvel at its beauty. But one thing I never could enjoy was bird song. Until now.

I would walk behind Bob, who barely looked up from the ground, and wonder why isn’t he looking around to find birds? Suddenly, he would stop and locate what he had just heard. Or sometimes he would simply pull his notebook out, write down “CAWR,” and move on, never missing a beat. I always thought that strange, though I was well aware that birding is largely by ear.

With the continuing decline in my vision, I decided to explore whether I should get a cochlear implant, not for bird songs, but to better understand speech. Hard-of-hearing people use lipreading extensively to help them understand what is being said. I can no longer see well enough to lipread, so I knew I would lose more ability to understand speech, a sort of double whammy. After a lot of research, encouragement from other cochlear implant recipients, and evaluations at the Massachusetts Eye and Ear Infirmary, which found me to be eligible to receive an implant, I took the plunge.

The surgery involves drilling a small hole in the mastoid bone of the skull directly behind the ear and inserting an electrode into the cochlea, or inner ear. Then, an indentation is made in the mastoid bone to set the main receiver of the implant on the skull before the incision is closed up. The external component, the processor, is like a minicomputer that can be programmed and updated with new software as technology improves. A wire extends from the behind-the-ear processor to a magnet that attaches to the internal receiver. Sound is received by the microphone in the processor, digitized, transmitted via the wire/magnet to the internal receiver, converted to electrical impulses, sent to the electrode, and the electrical impulses are then sent to the auditory nerve, which goes to the brain.

The surgery usually destroys all residual natural hearing in the implanted ear, leaving one completely deaf in that ear. So, the decision to do the implant cannot be taken lightly. There is no guarantee that one’s hearing will be better after the surgery than it was before, and indeed, it may be worse. But I knew my hearing was getting worse anyway, and I knew with the declining vision, this would become more problematic with time, so the choice in the end was clear.

On April 9, 2010, I had surgery for a cochlear implant in my right ear (the left ear continues to have a hearing aid). The surgery was a day surgery. Forty-eight hours later, the bandage came off, and I was back at work in a week. On April 29, the implant was activated.

When the implant was first activated, everything sounded the same and very tinny or high-pitched. I couldn’t decipher distinguishable words. It takes time and practice for the brain to learn the new sounds and for the tinny sounds to eventually become words and then sentences. Within a couple of weeks, I could understand speech vastly better than before the implant, and time would only show continuing improvement. The implant enabled me to hear, for the first time, many consonants that are high-pitched and beyond many hearing-impaired people. I could actually hear the difference between Chicago and change; tap and map; go and toe.

What I did not bargain for was BIRD SONG. I was stunned, absolutely stunned, by the fact that I was hearing birds everywhere. Not just a little, but a din of bird song. How have you all put up with House Sparrows all your birding lives? They are so annoying! I had never heard them. How were you able to tell the difference between a Red-eyed Vireo and a Blue-headed Vireo, a Scarlet Tanager and an American Robin? To my computerized sense of hearing, these are still challenging, but I think I am getting a little better at it.

Just imagine if you could not hear bird songs, how much more difficult and perhaps less enjoyable birding would be for you. I now know how you might feel. Not long after my implant was activated, a Kentucky Warbler showed up at a small park near Boston College in Chestnut Hill. Bob and I went over to try to see it in the early evening hours on a weeknight. We were alone in a small oasis of dense vegetation, tall trees, small ponds, and thick underbrush looking for the bird. Then it started singing. The song echoed in the forest, sublime, melodic, and all encompassing. I couldn’t move. I didn’t care to see the bird. I only wanted to stand there, close my eyes, and listen. For those of you who know me, you can probably guess what happened next. Yes, I cried. Birds, especially the little songbirds, have a tendency to move me to my core, but the added dimension of hearing them left me feeling overwhelmed with joy.

Since then, Bob and I have gone on many walks as I try to learn the songs with this bionic ear. I am hearing songs while the car is moving at 40 miles per hour; I am hearing them from some distances; I am hearing them when songs are on top of each other; and I am hearing songs that some of you, because of age, perhaps can no longer hear, such as the Brown Creeper, Blackpoll Warbler, Blue-gray Gnatcatcher, or Golden-crowned Kinglet. Every time I hear a Northern Parula, I am reminded of that first image of Martha raising her arm to the sky, as I, too, raise my arm and, for good measure, do a little hop, to give body language to the song’s rising zeeeee-up

In June 2010, Bob and I visited Ed Neumuth in Washington, Massachusetts, for a wonderful visit and day of birding at October Mountain. We got up at 5:00 a.m. and Ed was the expert guide for a tally of 76 species, including Mourning Warbler, which I caught a brief glimpse of. But what I most remember about that day, and probably always will, was a moment when a Winter Wren was singing its heart out very close to the road. As we stood there marveling at its song, Ed related the story of a birding friend who was dying of brain cancer. His friend wanted to go birding one last time. Ed took him to October Mountain. They were stopped at one place when suddenly a Winter Wren perched on a bare branch just yards directly in front of them and started singing. The bird sang for several minutes, and the men were mesmerized. When it flew away, Ed’s friend turned to him and said, “Let’s go home now; nothing can top that.”

Nothing can top what the cochlear implant has given me. I can walk in the woods looking down at the ground—like Bob and all of you—and know that it is quiet or know that a Black-throated Green just sang. I am satisfied, deeply satisfied, to just hear the bird. I feel no urgency now to see the bird, and perhaps strangely, no particular loss at not being able to see most birds any more. It is the song that now gives me immense joy, it is song that now enables me to more deeply share my passion for birds with Bob and my birding friends, and it is song that now connects me to the birds that I love. Yes I, too, was mesmerized by the beautiful song of a Winter Wren on October Mountain. Good luck, little fellow.

Martha Steele is a past editor of Bird Observer and lives in Arlington with her husband, Bob Stymeist. She is a native Vermonter, and she and Bob frequently bird the Northeast Kingdom of Vermont, including competing in the 2011 Vermont County Quest (sponsored by Birds&Beans) for most bird species seen in specific counties (in their case, Essex, Orleans, and Caledonia counties). Martha has spent most of her professional career at the Massachusetts Department of Public Health. In addition to birding, she volunteers in the Boston chapter of the Foundation Fighting Blindness and serves as the chair of the October 29, 2011, Boston VisionWalk. Martha and Bob’s team, Strides for Eagle Eyes, has raised nearly $60,000 for research on blinding diseases since 2009.



Assimilation: Two months

31 05 2010

It has been 2 months since activation. What can I hear now?

Animals seem to have taken over my world. I have a large leafy garden and can hear birds all day long, not just blackbirds, but magpies, starlings, a lovely orchestra of TWEET TWEET, TRIILLLLL, CHIRP CHIRP, PING PING, COO COO, PEEP PEEP. I love sitting outside listening to them. At the moment I am hearing around ten different types of bird calls. One night I cracked up laughing. I could hear 3 birds singing to each other, they sounded like a phone ringing, knocking at the door and the doorbell. When night falls, all the birds fall silent. Then the dog next door starts barking and carries on for an hour. Then my own dog starts barking in his sleep. I have also heard our cat miaow. I haven’t heard our foxes yet and we have plenty!

Lower frequency sounds have started to come back. I can hear the rumble of traffic and the bus engine. Sounds I am enjoying listening to are male voices. Those sexy, rumbling, low, growly voices. I’m fascinated by how different they are from female voices. Who woulda thought a voice could be so attractive?

I have been able to hear a teeny bit on the phone. No special equipment required! I use my implant as normal, on 100% T-mic microphone, pick up my mobile phone, and put it to my ear as any hearing person would. The T-mic mimics the hearing ear as it is positioned at the ear canal, aiding directional listening by collecting sound in a more natural fashion than a hearing aid or other brand of cochlear implant. I do need lots more practice in discriminating words before I can use the phone easily. Considering I have been deaf all my life and have never used the phone, this blows my mind. I love hearing voices as it is like the captions have been shoved straight into my brain, the understanding is just there. It seems so effortless when it happens.

I have been able to hear speech in other situations too. Last weekend, I was the 2nd photographer at a wedding, working with Amanda, the 1st photographer.

Michelle and Lee, the newly-wed couple, were standing in an archway. Amanda was taking photos from the inside of the building whilst I was taking photos from the outside.

Michelle and Lee were kissing for this shot and they kept kissing. The kisses became slower and longer. More lingering. I didn’t really know where to look. I started thinking “Hey guys, maybe time to get a room?”

Then out of nowhere, I clearly heard Amanda shouting “Again! Again! Again!”

“….. Slower!”

Situation heard and understood!

The street is incredibly noisy. I use Advanced Bionic’s ClearVoice to reduce sounds in noisy environments such as the street, train station, on the train. It’s fantastic, and I can pick out voices around me as unwanted background sounds drop away. I tested ClearVoice in a wine bar, and was able to lipread and listen to other cochlear implant users with ease. I heard one lady who came up to my dog and said “Hello darling”. I actually heard her say this behind my back! (I had to double check with her to make sure I had heard her right – I don’t trust my new hearing yet.) I noticed that the hearing aid users were unable to participate easily, they looked stressed and were often left out of the general conversation. This was how I was 3 months ago and I felt sad for those people. The cochlear implant users really had to make the extra effort to include the hearing aid users in the conversation. We totally understood, for we had all been there.

At work, with my office door shut, I have been able to detect my colleagues Calum talking in his soft Scottish brogue in the office next door and Karen coughing as she walks down the corridor, the photocopier room door squeaking next door, the photocopier spewing out paper, people’s footsteps as they walk past my office, people talking outside the building. I was able to pick out clear (albeit echoey) voices in the kitchen as we gathered together to celebrate Robert’s birthday – it is no longer a wall of horrendous mushy sound. I am still loving the sound of the clock ticking on my office wall.

Today I tried my hearing aid in my other ear for the first time in 2 months. An aeroplane flew overhead and I could clearly hear it approaching with my cochlear implant. To my shock, it didn’t even register with my hearing aid. My own voice sounds deeper and much quieter with my hearing aid, and I can only hear bits of it. I put the television on and set it at a volume that was nice and loud for my cochlear implant. However, I could not hear it at all with my hearing aid. The quality of the sound is different between the two hearing devices – higher pitched with the implant, deeper with the hearing aid. I am horrified at the difference and at how much sound is missing with the hearing aid – which I used to wear in my better ear.

How much I have missed the sounds of life – without even realising it. I have a lot of catching up to do!