On Healing

A series of recent events have me thinking about how I feel about life with dual disabilities. Specifically, to what degree would I want to mitigate or perhaps eliminate at least the medical component of said disabilities, should that become more possible in the future.

I suppose because I wasn’t born with significant hearing loss, but have had to adjust to it over the lifespan, I would definitely opt into something that promised to correct my hearing. I’m pretty sure now though that I’ve had some loss in that area even before I had become aware of it.

Certainly the technology to enable one to hear, at least in an electronic way, has progressed in leaps and bounds in recent years. Many see this in the existence of the Cochlear Implant. One thing that gives me pause in goingfor a CI though is that I’ve heard it can throw off sound localization, making it difficult for someone who is also blind to navigate safely around his or her environment. I think one could adjust to this, but I know not how long that might take.

I recently met an individual who is a mental health advocate, writer, and one who has assisted many people with disabilities in learning the social landscape. This person shared with me a video in which a woman hears sound for the first time via a cochlear implant.

I’d heard of this video before, and its attendant controversy. I guess people’s biggest concern had to do with the notion, right or wrong, that it would serve to enhance the public’s idea that perceived disability must always be a bad thing and should thus be dealt with. Some were also not sure how to take having such a private, emotionally jarring moment aired online. My position on that is it was her personal decision to do this, and should be seen as such.

I could be wrong, but it seems to me that deafness doesn’t get quite the social taboo that blindness does. I mean I suppose most wouldn’t actively choose to be without hearing, but many individuals who are deaf only can get good jobs and do things where their competence is questioned a little less. Are they discriminated against in some ways? I’m sure of it, and especially when attempting to communicate with others who are not deaf and don’t know sign language, or take in programming that isn’t properly captioned.

But when many see an individual who is blind, they automatically assume that some sort of sin has stained their soul. Some of the braver folks figure that God has actually appointed them to lift that sin, as a person tried to do this morning.

I’m strolling along, enjoying the birdsong and wind that finish waking me up as I head toward the bus stop. I get to the street corner, and over the sound of a roaring machine of some sort, maybe a lawn mower? I don’t know, I hear someone calling, maybe my name?

Are you talking to me?” I ask, turning to face the voice.

“Yes,” she replies. “God says he wants me to touch your eyes.”

And before I can stop her, she has practically smacked me in the face! She pounds my eyes a couple of good times before I softly remove her hands and push them down.

“Um,” I say: “I’m just trying to cross the street, an now I’m distracted. Can you tell me when to go?”

“Yes, but you gotta feel what happened! You have to believe! God’s gonna open your eyes in a week!”

I just say ok, and thank you, and shuffle on down towards the stop.

Because I’ve never seen before, I can’t even begin to imagine what it would be like to suddenly have working eyes in a week. I guess it would be like that woman’s reaction times 100, as I’d be bombarded with stimuli that I couldn’t make sense of without the proper context and training. I wonder if people who hope for such things to happen to a totally blind stranger have even stopped to consider the ramifications of the situation?

Second, I think I’m made just the way I’m supposed to be. As with hearing, I don’t begrudge anyone who wishes to be able to see after having been totally blind whenever it becomes feasible to do so, but I definitely don’t. I guess in many respects, I would feel like I’m giving up my “self” as I currently know it.

These are certainly interesting and complicated issues, and I know many who are working to find their own answers as they deal with one, both, or some varying combination of them. I guess what it comes down to in the end, as I said when someone at a small church I went to thought of trying this same sort of intervention, is to respect the person’s humanity. Ask them questions about what they might want you to pray over, or if they’d just prefer to be left alone. Because what you think you see in someone else is not always what is.

Travel By Leg: on my mobility abilities

This post inspired by Adventures in Low Vision, a blog about the different challenges and happenings its author encounters as she adjusts to low vision life. She writes snippets that I always enjoy, as they turn visual images into words.

In her most recent post, she asked the question “What do we as blind or low vision people do to ensure safe travel.”

In my now defunct blog, I had written about a series of techniques lumped into the general category called Orientation and Mobility that are designed to help blind people learn to navigate their environment. These most commonly include crossing the street safely moving around in large spaces such as malls and department stores, and using public transportation.

When many think of Orientation and Mobility, (O&M) they think of learning routes to specific places. Yes this happens, but if one only knew how to get from one particular place to another I don’t think one would be able to adapt well to new settings. I am happy to say that my instructors, probably some of the best there ever have been taught me methods that allow me to figure out where I am even when I locate to another area.

I never heard them use this exact term, but I believe the ability to put together bits of information to figure out different surroundings is called Structured Discovery. I sometimes do this by walking with a sighted person a couple of times and paying really close attention to turns, cracks in the sidewalk, street gutters, the sound of ventelation units, etc that help me memorize the layout. I would venture to say that suddenly I’ve gotten pretty good at this, and especially living in my sprawling Durham neighborhood with its restaurants, convenience stores, and leasing office a quarter mile away. I’ve also had to use this in the place where I work, as they often rope off familiar hallways without warning and I am forced to readjust.

The only thing that does concern me is the degree to which I rely on my rather shaky hearing in order to safely move about. I had lost this ability near totally with the lower quality hearing aids I’d had from January of 2006 till February of 2011, as they didn’t provide a high enough degree of stereophonic sound. By this, I mean the ability for both of my ears to work together to create a unified soundscape that makes it clearer when, say, cars are passing in front of me as opposed to going by on a parallel. This is vitally important when crossing streets.

Not that I’m entirely perfect even at that yet, unfortunately, but I think I do well enough to stay in one piece. I always press the button, waiting until I’ve heard an automobile pass in front of me before so doing to try and get myself as close to the beginning of the next light cycle as possible. It’s fun being me sometimes.

You might think it odd, but I believe the most dangerous part of the travel I do is actually crossing open parking lots. Here, if a car is moving it is usually doing so slowly. While I wouldn’t be hit particularly hard, hopefully, I also can barely hear the engine when there is little speed involved. I have lost a couple of canes this way, though as others point out in those situations, at least said canes did their job and kept my toes in tact.

To try and head that off, I’ll usually stand on the curb and, in a technique taught to me by my O&M instructors, wave my cane three times across my body to hopefully let anyone know that I’m about to step off. Then it’s just a matter of holding head high, trying to make sure I can be seen, and crossing fingers!

And on pressing buttons, or pulling cords, riding the bus is also usually an adventure. I’ve very much improved that over the year plus that I’ve been here as well, finally actually learning where the cords even are and thus how to properly use them.

And even though the ADA mandates it, not all stops are called out on most of the routes with which I interact on a regular basis. This is less of a concern for me lately though, as I can use my iPhone’s GPS apps to help me get a sense of where my exact stop is. I do this for the first several times I need to get to a different destination, until I get all of the turns, speed bumps, traffic lights and the like down so that I can ride without that assistance. I of course also tell the drivers where I wish to get off, but being human they are prone to forget and sail right on by if I don’t ring that ell in time.

As I stated earlier, I’m kind of afraid that my travel abilities may continue to deteriorate. I’ll probably never be able to really move around malls and such, unless perhaps I go ahead and get a guide dog. As far as that goes, I do feel I might be better with a dog than I’d thought as my basic mobility principles are solid. But if I have to get a cochlear implant, I’m raeding that others who are blind have lost some of that ability to track themselves in relation to other objects. That might render me unable to function, but I guess I have to hope not. Maybe it can be reacquired with time.

Thanks again to Adventurous in Low Vision for this post idea.

Hear It: My Challenging Wax-cleaning

I should open by saying that I am trying as best I can not to come across as overly critical of anyone. I do not think for a minute that the medical professional who saw me intended for my experience to be as it was, and there are things I could have done to make it less likely to have gone that way as well.

That said, I have a disorder called Norrie Disease that renders some unable to communicate what they are feeling or thinking, due to moderate to severe intellectual disability, autism, or some other developmental challenge. So, I take seriously the idea that I can attempt to be a voice for others, of course not having gone through exactly what they are but still being able to give some idea as to what it may be like.

So an audiologist with whom I worked looked at my ears on my last visit to have the aids cleaned. This happened right before the phrenetic events of my Christmas vacation, and in many respects if the aids had to die on me again, I am highly fortunate that they didn’t wait past December 20th to do so. I can’t imagine the displeasure of trying to get by with only one working ear in large family gatherings. Even with both working, functioning in such gatherings takes work.

Anyway, she determined that my right ear in particular was packed to the gills with wax and should be dealt with immediately. She’d wanted to schedule an appointment for that day, but not surprisingly this wasn’t available. So, she had me booked to go in today.

For this appointment, I had to go to UNC Hospital, which is practically on the UNC campus. I managed to get to the Audiology department in time for my 9:45 appointment and settled in the lobby where they were watching some sort of weird cartoon. I also heard kids scampering around, probably burning off energy as their parents tried in vain to keep up.

Soon, I went in to see the nurses and have my initial forms filled out. They weighed me, I’m up to 141 pounds which may be the highest number this skinny person has ever recorded. Then, they started asking me all sorts of scary questions about disease, family history, etc. Standard stuff I know, but nevertheless it makes me nervous.

After a short wait in a doctor’s office, thankfully not too cold, and just as I pulled out the iPhone figuring that it might take longer for him to arrive, the doctor showed up.

“Ok, what are we doing here today?” he asked.

“I’m here to have my wax cleaned out,” I replied. “My audiologist says it’s starting to be a real problem.”

“Ok then, hop on up here,” (I was ushered to a somewhat reclined chair where my head was then placed firmly against its back at an angle), “and take out the aids, one at a time so you can still hear me and will know what to expect.”

Into my right ear went the air machine. I actually don’t really know what it is called, except that it made a fair bit of noise. I could immediately feel it sucking, and thought to myself “ok, maybe this won’t be so bad after all.”

And then, oh but then. He gradually amped up, commenting: “man this stuff is really packed in. That’s common for hearing aid wearers though.”

If I had remembered my last attempt at having this done, I would have suggested that we go ahead and stop there, just letting him prescribe me the eardrops he eventually did recommend I get. You administer them to each ear approximately three times a week for a month, and they’re supposed to loosen up the wax so that it will come out more easily. I’d done this a year or so ago, but then we never went forward with the larger-scale wax removal.

Unfortunately for me, this thought didn’t occur to me. As the machine pulled harder and harder in my ear, first tears began rolling down my eyes.

“Are you ok?” he asked.

“Yeah, this sort of thing just makes my eyes water,” I replied. I’m not crying! I thought to myself.

Within the next few seconds, I practically was crying. I kicked the table, screamed “ouch!” and all but forced him to stop. Oo man! I don’t think I’ve ever experienced pain like that. Oddly, the only thing I could think was “I wonder how on earth women go through with childbirth?”

“I’m about to pass out!” I instructed him once the machine had ceased operating and I’d removed both aids. “Would you happen to have any water available?”

I guess it had occurred to him that I might just need some water at some point, because a full styrofoam cup was in my hand a second later. I gulped it greedily, and just managed to stave off that unwanted episode.

After this, he decided to go ahead with the drops after all and have me return on February 13th for an attempt to complete the process. I was more than a little relieved to get out of there with my hearing in tact.

Except, when I plugged my right-side aid back in, all I heard was the faintest sound of its turn-on tone. “Oh no,” I thought in panic: “I may have lost a lot of my hearing in this ear!”

I muddled my way back on to a bus to Franklin Street to go to Walgreens and collect the prescription, then fired off an email to one of my audiologists to ask what she thought might be happening. I said “and if this loss is permanent, can I begin the process of getting a cochlear implant?”

She replied, correctly I now believe, that things would probably be ok in short order. My canals are kind of small, and thus it’s easy to get things like wax and such lodged in a place and way that it shouldn’t be. As the day has progressed, I’ve noticed more hearing returning as the pain lessens. All I can say to that is Thank God! I envisioned having to make radical changes to my navigation and independence, which I would have done if necessary. But I won’t lie, that sort of adjustment would be hard. I’ll probably have to make it at some point, I imagine.

So I guess the main reason I’m writing about this is to note the importance of really sitting down with the patient, doctor, and perhaps someone who can communicate on the patient’s behalf before treatment is initiated and generating a plan. The thing is, I know that doctors rarely have time to do this. If it doesn’t happen though, it could definitely have less-than-desirable consequences.

Also, it is important to listen to and be aware of the patient’s responses. I can say that he did suspend treatment once it became clear that I could no longer stand it. I’ve heard of cases where this hasn’t happened, and I’d bet it would be more likely if the patient was unable to speak for him or herself.

Just some stuff to think about. I hope all will be normal for me by the weekend, as I still feel some lingering pain but it is now more noticeably decreasing. A nap when I arrived home helped with this. I hope I don’t have any balance issues when returning to work tomorrow, but we shall see. More soon.