Latest Developments

I realized I’ve fallen off the face of the blogosphere, which can easily be attributed to the past few months being a bit hectic.

Surgery was December 4th; I baked cookies for the surgical team, we listened to The Beatles, I ranted about my cat, and eventually made D do Cher and Dionne’s handshake from Clueless. Everything went as planned and results were positive. It was odd not having my parents there, but my siblings, friends, and neighbors rallied and made me feel incredibly loved and cared for. One of my best friends even went so far as to let herself into the house during my surgery and leave a coloring book and sharpies on my bed.

Everything continued to go well; a few days after my surgery I was offered a job with a company that I had been dreaming of working with for six months. It’s a tech startup with that works with hospitals to connect patients with all the resources they could need to make life easier and more manageable. It is perfect, and when I told D about the offer, his eyes started to sparkle and he said this is what I was meant to do. Of course I told him this was entirely his fault, he’s the one who empowered me to pursue my medical interests.

Then one night, the area around my new and improved abutment turned red and angry and was painful to the touch. D, wonderful human that he is, emailed me a treatment plan from across the world before the resident-on-call called me back.

The newest inflammation confirmed for us that the issue was not with the abutment, but that it is an autoimmune response and we just have to manage it. I teared up as D and I discussed this, his first day back from vacation, because stereo hearing is so important to me and I never want to give it up. I hate that what is meant to be a simple and easy fix is such a difficult process in my case. D offered me a piece of gauze in lieu of a tissue and reassured me that it was better than a paper towel.

On my way home, I reflected on our conclusions about my temperamental immune system and decided that although this is annoying and unfortunate, there is no doctor better equipped to treat me. I am so privileged and so happy that D listens to me and supports my choices for my hearing. Everyone needs to find the doctor who understands how to reconcile patient priorities with medical necessity.

 

Third time’s the charm?

I started this blog to share the greatness that has come with stereo hearing, and while my life in stereo has made all of my dreams I didn’t know I had come true, there have been obstacles.

Five days after my first processor was activated, I was diagnosed with a serious illness, and since then the illness has at times wrecked havoc on my bolt. After a year of fighting inflammation with antibiotics, steroids, various creams, and near-constant appointments with D, we decided to do a second procedure and take away some of the skin that was around my bolt in the hopes that it would stop flaring up.

That surgery was a success for nine months. Over the summer, I was sick enough to spend a few days in the hospital, and almost immediately the area around my bolt became inflamed. D was flabbergast. I apologized for having such a wonky body and he told me about how he’s talked about this with so many colleagues at this point, and he always talks about how despite all of the issues there have been, I am such an enthusiastic and happy Baha recipient.

Now we’re gearing up for surgery #3, getting sign-offs from other doctors and coordinating with Cochlear. D’s assessment was that we have tried all the non-surgical options, it’s time to change the abutment completely. His original idea was to switch to a magnetic abutment (Baha Attract), which I have had major reservations about. I was concerned about the implications for MRIs, the lesser sound conduction, and to be honest, I’m pretty attached to my bolt (no pun intended). Alternative abutment choices came up before the last surgery as well, and I had asked about the DermaLock option, which is the new standard abutment, instead of titanium. At the time, D was hesitant about it but I brought it up again in our discussions after reading this. Because he’s an amazing, compassionate, thoughtful physician, D has listened to my continued concerns and agreed to try the DermaLock instead of heading straight for the magnet.

As much as I enjoy listening to The Beatles with D, I hope that this will be our last surgery together, and hopefully my body will be kinder to my new bolt. That said, stereo hearing is the priority; I will try everything to keep it. Giving up Baha altogether will never be an option since all my dreams are deeply rooted in stereo.

My Original (Medical) Champions

While considering contacting former doctors and physical/occupational therapists for a new project, I’m having a moment of realizing I’ve had an entire life since I knew those people. And the crazy part is that their treatment gave me this life. Oh the places I’ve been… I’m so grateful for the care I received all those years ago, and now I’m excited to get a fresh perspective from the original champions of my recovery. When they called me resilient in the ’90s, there was no way they could have imagined this amazing life that they gave me the building blocks for.

Kind of Deaf

In the past week I have met two people who have both apologetically confided that they are “kind of deaf”. The first was a waitress who misheard my order, the second was a handyman who mistakenly addressed me as Suzy. I’ve spent my life apologizing for not hearing and making self deprecating jokes. It gets exhausting to ask people to repeat themselves over and over again, which is why so many of us with hearing loss eventually just nod and try to piece together what we’re missing. A lighthearted example of this is how I would laugh as soon as my siblings laughed despite not hearing the joke. A more serious example comes from several of my elementary school teachers who in recent years have told me that they knew I couldn’t hear most things but that I was agreeable and so I did fine.

There’s so much embarrassment and shame that comes with telling someone you can’t hear that well, especially when it effects your performance on the job. Both the waitress and the handyman’s faces lit up when I smiled and told them that I’m “kind of deaf” too. I gave the waitress the number for D’s clinic and she was so happy. The handyman went on to tell me that it helps him to see someone’s lips when he talks to them and I told him that I’m the same way and so many people don’t get it.

There are so many of us who don’t fit into the profoundly deaf category and so we seem to slip through the cracks. I don’t know the extent of the waitress and handyman’s deafness, it doesn’t feel like my place to ask, but I know that it effects them enough that they blush the way I always have when I apologetically tell someone. Baha and D give me hope that doctors and society in general will begin to support people with moderate to severe hearing loss in a better way, but we need more. In order to set aside the stigma, we need more awareness about the kinds of medical solutions that exist as well as more awareness about how to accommodate individuals with hearing loss. We need to share resources and ask what we can do to help. We have to do better for each other because everyone should be able to actually laugh at the jokes and succeed.

Spreading the Joy

After three years of stereo hearing, I sometimes take the wonder of it all for granted, which seems like a reasonable and healthy response. I used to always say that the world came alive when I turned on Baha, and it still does, but these days I tend to be in more of a rush or focused on other things and my exquisite hearing becomes as normal as getting dressed.

What excites me now is when other people hear what it means for the world to come alive through Baha. My joy comes from other peoples’ inspiration. Recently I received an email from an author whom I greatly admire, saying that our letters had inspired her to reevaluate her hearing aid situation. My joy comes from seeing a med student pal’s entire face light up when she heard Watch Me (Whip/Nae Nae) through her skull over cocktails. And yes, I do carry my little plastic abutment around so that everyone can try out bone conduction, because you never know who you’ll run into.

Baha has brought so much magic into my life. Sharing that magic and and seeing the ripple effect of excitement is what lights me up. `

Technical Difficulties 


It’s such a bummer when I’m at a stellar bluegrass night and my phone won’t sync with my processor, leaving me unable to adjust the settings and volume. Come ON Cochlear, Sprint, and Apple (I’m not sure who’s responsible here, but seriously, come on).

Consequences of Discretion

The Baha 5 is marketed as being discreet and intuitive. For most people, using their phone to make adjustments is more discreet than reaching behind their ear to press buttons. Don’t get me wrong, I love my Baha 5, which resembles a skipping stone, but I wish I had the option to change the volume on the processor. As it is, I need to turn on the bluetooth on my phone, connect, open up the Baha 5 Control app, and then adjust the volume. If I were working at a desk, or only interacting with adults who were also on their phones, this would be fine.

However, I am primarily surrounded by children, and this presents two problems.

The first problem is that when I’m working with children, it’s unprofessional to have my phone out. Recently, I spent a morning in a preschool classroom and left my phone in my bag. With no way to adjust my processor, children’s shrieks and excitement became a static annoyance. While with my old processors i would simply turn down the volume or turn it off entirely, this is not an option as the battery has to be taken out of the Baha 5 for it to turn off and that would create a whole other issue.

The second problem is that young children generally don’t give you time to adjust. When I am with a child one-on-one, not in a school setting, I’m okay with taking out my phone to adjust the settings. Yet I find that as soon as I make the appropriate adjustments and put down my phone, the settings need to be adjusted again because children’s voices, moods, and activities, change faster than my phone can respond.

I first noticed trouble with picking up the frequencies of groups of children’s voices with the Baha 3; the shrillness of children’s voices caused constant feedback. The need to have optimized hearing in a classroom was the medical necessity we used to justify upgrading to Baha 4. The 4 and the 5 both replaced feedback with static, which is less horrible, but still not ideal. As it is, the static is almost as irritating as the feedback, and I’m pretty annoyed that the features that make the Baha 5 discreet and enjoyable for normal use seem to make it more difficult for using at work.

With so many Baha 5 recipients being children themselves, I’m curious about how their experience is now compared to with earlier processors where they had more control. At least I can understand why the processor is reacting in certain ways and how to deal with it, a child in school who is irritated by the static might not be as forgiving of the sound or the product.

Overcoming the Fear

There is something terrifying about having one of your senses threatened. If you have to lose hearing, it should probably happen when it happened to me, at five, when I was old enough to have mastered speaking (the paralyzed vocal cord would put a damper on that, but that’s another story for another time) and being a confident kid, but young enough not to remember and to be resilient.

I spent years being fearless in terms of my recovery, going through the different therapies and doctors. My attitude was that this was just how life was, this was what I needed to do. That said, I would cry when there was too much noise, at school assemblies or right next to a bagpipe. I was afraid of damaging what hearing I did have.

In middle school a different kind of fear set in, a fear that every child deals with, the fear of not fitting in. I was offered an FM system, which I promptly turned down because my differences were only okay if they were invisible. My teenage years were interesting; I was simultaneously afraid of losing more hearing and yet insisting on self-destructive behavior to fit in with my peers (loud concerts and earbuds and such).

D took away the fear by giving me a solution. Of course that brought on a whole new bunch of fears: fear of surgery, fear of embarrassment for having something sticking off of my head, fear that something, anything would go wrong.  But the first time that I tried a simulated version of Baha, my fears slipped away and I had to have my own processor because the world came alive for the first time in seventeen years.

I was afraid because I was operating under the assumption that my hearing was something I had almost no control over. Baha gives me power. My connection with D and my audiologist gives me control. Now I have ownership of my hearing. I’m not afraid anymore, I’m free.

Navigating

I’m still getting used to this whole Bluetooth streaming situation. I’m navigating the difficult ethical and moral dilemmas of if I’m listening to music while with other people and they don’t know, is it rude? Is it okay? This is truly revolutionary; no one knows when I have music streaming except for me. 

Recently I was tasked with navigating while in the car with my sister and my dad. Naturally, I opened up google maps and input our destination, ready for Siri to do the rest of the work. My sister complained that I was doing a horrible job giving directions and I asked her what she was talking about. Turns out Siri was streaming into my head and only telling me when to turn left.