As if Monday’s tragic events at the Boston Marathon weren’t bad enough… Among the serious injuries is permanent significant hearing loss and tinnitus. Interesting to see quotes from my new doctor at MEEI, Dr. Alicia Quesnel, who treated some of the victims.
Back to Mass Eye and Ear for a one year surgical check up. I’m very healthy with no physical issues related to the implant. In general, they like to take a look once a year in your ears and test your non-implanted ear. Since the audiologist recently tested my non-CI ear, today the surgeon just checked my ears and the area where the implant is under my skin.
Everything looks great. She also peeked at my audiograms and said I was doing good. Right in the middle of where they want me to be. She said I should be experiencing much more clarity. My reaction is like a petulant child, “I guess so (smirk)”. I know I sound like a broken record but I just want more. I do not want to have any hearing loss. Sigh… Yeah, it’s nice to want things, eh?
The surgeon who did my surgery last year has relocated so I was seeing this doctor for the first time. I liked her a lot and she seems very smart and competent. I am very fortunate to be in Boston I think. I asked about preserving residual hearing should I pursue a second implant at some point. She said that my hearing in my right ear is useful and understands my interest in perserving it. When I was evaluated I asked this question as well and was told Med-El has some track record in this area. However, I decided to go with Advanced Bionics. Performance wise I’m glad and still think it was a good decision. However, I do mourn the loss of my natural hearing in that ear although there wasn’t much (20%). For now I’m happy with unilateral because when I take off the implant I still have enough hearing to communicate, albeit in a limited way.
Another question I asked about was if MEEI recommends to pediatric patients not to use sign language at all. She said that they would not want the pediatric patient to exclusively use sign but that it’s fine as another communication tool if it helps. I was really glad to hear this because my recent exploration of ASL has been so interesting and to be honest, it feels great because it’s a way to communicate where I am not limited in ability, beyond my lack of fluency which I can do something about! I love the idea of using any and all communication tools that help you.
Last week I participated in my first testing session as a human subject in a research study at Mass Eye and Ear. I sat in a sound booth, the research scientist connected an older Advanced Bionics processor that they can program and tinker with. The first session involved stimulating all 16 electrodes, one at a time, on the electrode array of my internal implant and establishing thresholds for loudest and and softest sounds. The good news is that all of my electrodes are getting good response from my auditory nerve. The device and my brain are working. No jokes about my brain, okay? I did not enjoy the stimulation of electrodes 15 and 16, which are positioned at the base of my cochlea and pick up the highest frequency sounds. They got too loud quicker and the loud sound made me feel momentarily woozy. My theory is that this is the part of my cochlea that has been dormant the longest, perhaps always, and is the least used to sound. I’m fine though. It’s been a week and everything is still working. Plus when I signed the consent forms there’s some language that says, more or less, that they’ll fix me if they break me.
The research is being conducted by a PHD student who is affiliated with MIT. His background is in biomedical engineering. The purpose of the research is to experiment with stimulation of electrodes in the cochlear implant in an effort to reduce current spreading. The hypothesis is that if they can be more precise with how the current is directed when electrodes are stimulated that the speech perception will improve. And who knows there could be other discoveries along the way.
I’ll volunteer every couple of weeks or so. The duration will depend on how the experiments go and my availability. I can opt out at any time if I need or choose to.
I hope I can help. I figure I’ll learn more about the implant and how it works. It will help me better understand what it can and cannot do. I’ll also get a sense of what could be coming in terms of improvements. And if I’m really lucky I’ll get to try some cool beta software that helps me hear even better 🙂
Some introspection related to a comment I read in an article about web accessibility testing for with people with disabilities. Hearing loss, or impairment as they called it, is described here. I personally don’t have a preference regarding terminology used.
“Hearing impairments: This includes varying degrees and onset of the impairment, such as complete deafness from birth or lower hearing capabilities developed as we age.”
While hearing loss is more common in the older population, it is by no means exclusive to that group.
Hearing loss isn’t just old people. Hearing loss affects all ages. It’s kind of funny because many of us with slow progressive loss live with it without saying anything for a long time. Too long usually :-{ By the time someone with a progressive loss finally comes to terms with their hearing loss, or is badgered into acknowledging it by a spouse or family member, they are in fact older. So the perception that it is primarily an age-related issue is reinforced.
Those of us who advocate for more awareness about hearing loss and its impact are trying to change that perception. Part of the motivation touches on another bugaboo “ageism”. Unfortunately, when we categorize a problem as related to the older population, there seems to be a tendency to view it as less important. That, I think is a whole other discussion, which is also very worthy of attention.
I was diagnosed with hearing loss in 4th grade. I’ve had slowly progressive loss from age 9 to age 50. Now, thanks to a cochlear implant, my hearing loss has lessened, when I’m wearing my CI processor. A lot. But it’s still there in a mild to moderate level, depending on the listening situation. While I had earnestly hoped to leave that group I’m learning to accept my imperfect hearing and I’m learning how best to minimize any inconvenience it causes in my life.
How do I look back over this year and summarize? Is this an end? Have I arrived at my destination? When I set out on this journey I think my destination was not well understood. I had a plan based on too little information and some unrealistic expectations. As I’ve experienced the highs and lows of coming to terms with this life-changing experience my notion of destination has changed. I think my journey, in some ways, is just beginning. I’m learning what it means to be deaf with a cochlear implant. Now some people will take offense to that statement. I am not Deaf with a capital “D” which implies identification with the Deaf culture. However, from a clinical perspective my unaided hearing does not provide adequate speech discrimination, i.e. I’m deaf. I’ve come to understand that the implant is a hearing tool and not a cure for deafness. It enables me to be successful in the hearing world with the caveat that I still live with hearing loss and need to educate others about what I require for successful communication.
Going into the CI experience what were my hopes? I thought that certain, or some, challenging listening situations would become easy. That certain people, whose voices I found hard to hear, would now be clear to me. The mystery of rapid group chit-chat would magically unravel…
The reality was not so clear cut. I achieved degrees of improvement that did not entirely resolve these challenging listening situations. There are people that are still hard to hear. While my audiologist tells me I’m an “A” student in CI achievement, the real world is quite different from the audiologist’s sound booth. The shangri-la of hearing without effort remains beyond my grasp.
Do I hear more than I used to? Yes. Do I hear sounds I may have never heard before? Yes. Can I use assistive technology to help me hear better in certain situations? Yes. Can I hear everyone well in all situations? No. Does this bother me? Hell, yes!
I kept feeling like I “should” be able to hear even better now than I do. I’m greedy. I want more. I was told by a wise counselor that I need to forgive myself for not hearing perfectly. No amount of effort will give me normal hearing. This simple message is surprisingly tough for me. I bought into our cultural belief that with the right amount of motivation and effort we can do anything, which is not universally true. When I was told this I cried because my entire life I did do very well in spite of hearing loss. However, there are limits for me, and those limits have nothing to do with me or my value as a person. I’m working on really believing this. It’s the first time in 45 years that anyone said this to me…
I actively work to better understand, and accept, my hearing ability today and its limitations. I work on asking for the right kind of help and not apologizing for needing help. I tell my story as often as I can and find that revealing my vulnerabilities brings support and connections with other people that I could not have foreseen. I am not alone.
When reading other online blogs and CI vendor forums there are lots of miracle stories. I’ve got to comment about those “miracle” stories. My reaction is yes, but. Even in our special club of CI users there are those who, ahem, embellish. Now, perhaps I’m being harsh and this really is their perception but it’s just that, perception. The reality may be different. For example, my audiologist told me the high speech scores that are reported are sentence scores and not single word. This is a huge difference because sentences can be guessed way more accurately. Also, many people who write had sudden loss, versus slow gradual loss like myself. This too makes for a much different CI experience. I’m also meeting and hearing from older folks who may be retired versus working in a challenging day to day hearing environment. I’m also meeting CI users whose jobs were previously revised to require less phone and meeting communication requirements, providing a much more controlled hearing life. So, their expectations post-implant were different as well. Another group are long-time hearing aid users, who were accustomed to the challenges and limitations of device-assisted hearing. And, finally, those who experience some disappointment with the CI often don’t want to write about it. I think many still take it as personal failure and human nature is to shy away and not talk about it.
For the past six months I’ve been doing a self-directed crash course in hearing assistive technology. Due to my technology background I’m comfortable experimenting on myself. Now that I have more range in my hearing I can benefit from technology that was not previously available to me. For example, amplification can now provide information rather than just distortion because I now hear high frequencies. This is not admitting defeat. It’s being pragmatic. And it’s interesting to see how others perceive my experiments. In some ways I feel like it separates those who “get it” and want to help, or think it’s cool, versus those who don’t. I’ll admit sometimes I’m surprised. It can be a tough pill to swallow when you experience a lack compassion in response to your explanation of what you need to communicate successfully. However, I try to be somewhat philosophical and say that each experience, even it is difficult, is teaching me something. I’d prefer all the lessons were pleasant and easy, but…
Is this too negative? I’m trying to be honest with myself and others. I am so grateful for the lessons of this past year. I’m finally learning that I have a lot to offer others in telling my story and sharing what I learn about living with hearing loss and with a cochlear implant. My journey continues.
Someone asked me what my favorite new sound is now that I hear so much more. The answer came to me almost immediately… I love the sound of the rain.
You know how some people have a place where they toss their car keys when they get home… Well, here’s where I pile up the bits and pieces that come with my cochlear implant usage. I have long wires, short wires, telecoil compatible wires, battery chargers, headpiece microphones, etcetera, etcetera.
And I only have one CI. Can’t imagine managing double this amount of stuff!
Bear in mind, that I’m a gadget girl. I like to know what my hardware can do and I’m always looking for new things to try out, using myself as a guinea pig. Sometimes I like it. Sometimes I think it’s a giant pain and too complicated. Mostly I like to know what my options are along with the pluses and minuses. And when I find something I think is cool and works well, I really like telling others who might benefit.
My advocacy work continues… I’m experimenting with assistive technology that can help people with hearing loss. While my cochlear implant helps me hear better it doesn’t solve all hearing challenges. In particular, noisy environments and large meetings.
Today I tested an infrared transmitter and receiver to hear better in meetings at work. It was pretty cool and did help. The equipment is on loan so I’m sending some questions to the vendor. In New Jersey I think.
They replied and signed their email “Everybody has the right to hear.” I love that statement and I’m gaining the experience and courage to believe it.
Now that I’m wired for sound, I need to find out what this baby can do. What better way than to get trained as an assistive technology volunteer advocate. I applied for a training program offered by the Hearing Loss Association of America and was accepted. I plan to use what I learn and share what I learn at my workplace, with local hearing loss groups and for my own personal benefit. I’m hoping it’s gong to be a win, win, win. We shall see…
My stay in Denver was extended a few extra days due to Hurricane Sandy. This gave me time for a spontaneous road trip to the Rocky Mountain National Park with two other Boston area trainees also stranded by the storm. We took a fun day trip with a dinner stop in funky Boulder, CO. It was beautiful. It was also nice to travel with two other hard of hearing people. They remember what I need for communication success because their needs are similar. A bit of a relief to be honest.
Fast forward a few days.
I just completed Hearing Assistive Technology (HAT) training. When the opportunity came up to become a HAT volunteer and advocate I wasn’t sure I’d qualify for the program and I wondered about finding the time to fit in the commitments. But I was very interested and, in fact, have already been doing advocacy, testing and sharing of information like this at work, with friends, with my CI contacts. So why not?
Boy am I glad I did. First of all, I found so many other wonderful people who are living with all forms of hearing loss and trying to maximize their communication ability. We live in exciting times with a lot technology options, maybe too many. We don’t have to just deal with it. There are things we can do to make our lives easier and participate more fully. I did my best to try and soak up all the information and now have a number of research projects to keep it going. And I have some potential new “partners in crime” to work with 🙂
So my CI friends say air travel is no biggie. Security scanners, etc. should all be fine. I’m supposed to walk on through with the “normal” folk. My surgeon advised me to heed any warnings for people with pacemakers since that’s another surgical implant with metal in it. Uh, okay. It’s been a while since I’ve flown anywhere so I am a little nervous.
I decide to wear my Harmony on-ear processor, put my Neptune processor in my pocket along with my Advanced Bionics ID card. The reason I’m carrying hardware on my person is because I’ve read warnings that the processor microphones are sensitive and can be damaged by luggage x-ray scanners.
At Logan, it’s my first time going through the full body scanner thing. I just do what that tell me. Stand there with my arms over my head. Didn’t feel a thing! The young woman sees something, I guess my implant and hardware I’m carrying. I immediately tell her that I have a cochlear implant and that’s what’s she’s seeing. She asks if I’m willing to be patted down on the spot or if I want to go somewhere more private. I tell her to go for it and ask if they do back massages as well. She smiles. No problem. On hindsight, I should remember not to joke with TSA agents. A sense of humor isn’t one of their job requirements. I was lucky and the people I dealt with were quite nice.
One slip up had nothing to do with my implant. I forgot the requirement about limited sized liquid carry ons and that they needed to be in a quart size ziplock. Another agent had to open up my bag. Took a little bit of time but he was nice and no problem .
Waiting at the gate I don’t hear clearly when the gate attendant calls to start boarding. I quickly approach her, tell her that I’m deaf and that I did not hear the announcement. They immediately tell me I can do advance boarding. Cool! I’m one of the first on the plane and can easily stow my carry on bag. And the staff on the plane check in with me to see what I need. I tell the flight attendant I can hear pretty well with my implant but that he should check on me if there are any important announcements. I then joke and say, “Just remember to save me!”. He laughs and high fives me.
Take off. Okay what’s gonna happen now??? I’m wearing my Neptune processor now and the loudness of the take off is bugging me so I remove the headpiece microphone. Again, nothing happens to me physically. Don’t feel anything weird, bad or uncomfortable. Oh yay! Cochlear implant recipients really can travel by air. I am such a doubter! Only once I try it myself do I truly believe. Does that make me a bad person?
Next fun thing. I can plug my direct connect audio cable into the audio jack on the arm rest to listen to the in-flight movie. So far I’ve been too distracted by other stuff but I think I’m hearing it pretty good!? I will have to pay more attention. This is cool and it makes me happy.
Again, I had a large meeting training event on my schedule in an on campus auditorium. I contacted the event organizer and asked if the space had an assistive listening system. They contacted AV, who was working the event, and found out that the auditorium had an FM assistive listening system. Not very often used but there and they could give me some headphones to try it out.
The headset had in-the-ear type earbuds and a sort of stethoscope type piece under your chin with a receiver in it to pick up the audio transmitted via FM. Anyone could use this system for amplification, it does not require hearing aid or cochlear implant. Problem: The design of the headset was not compatible with my implant’s processor, nor with most hearing aids that I’m familiar with. I would need headphones that go over the ear 😦
But I don’t give up so easy.
The day before the training I visited our AV department in person to confirm the headset issue and ask about other options. They were great and willing to work with me on solving the problem. I mentioned that my processors allow a direct connect with a standard 3.5 mm stereo jack to audio sources, like an ipod. At the moment, when I was chatting with them, there was another event in that same room. They offered me the option to test on the spot. As luck would have it the event was on lunch break. I ran over there, tested, and voila it worked!
On the day I was attending the training, the AV guys arranged a reserved seat for me with a very long cable and a special connector box that was under my seat. During the event all audio via microphone was mainlined to my cochlear implant. It really helped a lot.
While this solution isn’t as flexible as I like, nor is it scalable to more users who might need similar assistance, it worked dammit! Oh hallelujah! Finally a benefit that’s really making a difference for me. Assistive technology may be my new friend.
So now I need to find out what more portable, scalable options I can get my hands on and test. The AV guys at my workplace have been awesome and I know they will work with me. We will make MIT’s public spaces accessible to hard-of-hearing. I’m excited to make this happen!
The Year I Hear 