It took me over 6 years to get up the courage to write this email, which was shipped a few minutes ago. Some bits removed for privacy, and... gosh, it's a long email, but it's the one I sent and the one I felt right writing, so there it is. I'm posting this as a chronologue of my process for the benefit of my future self's memory, and also in case it helps someone else someday, because I sure as hell don't know what these emails look like when other people write them.
Also, as a total side note, this technical description of the surgery is awesome.
Hi, Dr. [Name] -- I hope I'm sending this email to the right place, as I wasn't quite sure how to start. For the same reason, this email might be a bit long -- the short version is that I'm interested in exploring whether I might be a hybrid CI candidate.
My name is Mel Chua, and [background details of how we were introduced some years ago]. I had (and still have) the sort of bilateral severe-to-profound high-frequency sensorineural loss that may have made me a candidate for the surgery, but decided not to investigate my candidacy at the time.
I'm interested in doing so now, though. I'm 26 years old and in grad school at Purdue, getting my PhD in Engineering Education and spending a lot of time with the Audiology department (http://www.purdue.edu/hhs/slhs/) on the side as both a clinic patient and a student, and soon an instructor (I took Joshua Alexander's course on Hearing Aids last semester and am teaching the grad-level signal processing course in the department this term). I'm also wearing hearing aids (Phonak Naida S IX SP, acquired in May) consistently for the first time; it was talking shop about new technological developments with Purdue's audiology faculty that convinced me to give them another shot.
They've been a revelation (my speech has noticeably improved, classes are far less effortful, and I'm understanding Mass for the first time) -- and they've also made me aware of how much more there is that I'm still missing, and how differently I might be able to teach and speak if I had access to more frequencies, especially after talking with a professor who got her CI as a (middle-aged) grad student and witnessed a profound shift in her ability to connect with a classroom. As you might guess from an an engineering education PhD student, teaching is hugely important to me, and I'll do just about anything to be able to work better with my future students. As a musician and dancer, I'd like to preserve my residual low-frequency hearing if possible (I realize there's the risk of damaging or losing it, but the possibility of preserving it is there.) So the hybrid CI has been on my mind a lot over the past few months, and I've finally worked up the courage to write you this email.
Now that I have access to a university library system, I've been looking up some of your papers on PubMed, and went to talk with Xin Luo (a Purdue faculty member that does CI research) and one of his grad students about hybrid CIs and the risks and results so far. I heard they're now in Stage II clinical trials, and that things look good. One of the Speech Pathology grad students pointed me to http://www.audiologyonline.com/articles/cochlear-implant-hybrids-who-candidate-990 and we talked a little about candidacy criteria, and so far (according to that link) I seem to be a potential match. (I can provide more information, like my audiogram and my notes on why I think I match each of the criteria I've found, if you'd like; an ancient audiogram is at http://blog.melchua.com/2007/01/28/what-it-looks-like-to-hear-like-mel/.)
I'd like to find out more, and to see what it would take to come in for an initial CI evaluation. [Scheduling/transit/location discussion]
There's no rush; I'm thinking long-term and am very much in the "exploring options" stage, trying to learn about the potential benefits (hence the initial evaluation - maybe sometime after spring break?) and also the costs, since grad student finances are... well, you know. If I were a candidate and decided to go for surgery, my timeline would probably be sometime between late Fall semester 2013 and early Fall semester 2014, because I plan on being ABD in Fall 2013 and finishing data collection for my dissertation in June 2014, which would let me acclimate to the new input while I'm "just" writing (I wouldn't need to worry about attending or giving lectures).
As a side note, I'm also fulfilling part of my PhD course requirements (we are required to do a certain amount of graduate-level engineering work on any topic of our interest) by learning more about hearing technologies -- taking classes in the Audiology department and so forth -- and I would love to contribute to knowledge about hybrid CIs in as great a way as I can. If I undergo the surgery, I will be experiencing the CI through the lens of a young electrical/computer engineer who's a musician, loves to learn both tonal (Mandarin) and non-tonal (German) languages, loves to write, and has embedded hardware and software industry experience. My committee has historically been awesome at letting me do somewhat oddball independent studies for requirements, and is very encouraging about my explorations in the hearing field, so perhaps there'd be something useful I could do beyond providing the usual clinical data -- but that's a totally optional thing that can be explored after a candidacy evaluation, I just wanted to put the thought out there.
Anyhow -- before this email gets any longer: I'm interested in exploring a hybrid CI as a possibility, and would greatly appreciate any thoughts on next steps you might have, or contacts you'd suggest talking with in order to move forward.
Hope you had a very Merry Christmas, and best of luck with the spring semester -- many thanks, and I hope I'll get the chance to meet you someday and talk more about this.
Okay. Holy crap. I sent this. Holy holy holy crap. (Dear future self: I'm sorry if your/my/our kids or students or something are reading this someday, but I am in a period of my life where I use expletives, and seriously, They Will Deal.) This took a lot of breathing. Lots and lots.
And now I need to decompress a little -- grocery shopping and dinner time! -- and then... and then I can work on my class materials for tomorrow, but... but... yes. Triumph. I took a step. And I will learn about this process from multiple sides -- as an engineer, as a deaf person, as a researcher, talking with people who think CIs are awesome and people who think they're terrible, talking with people whose CIs worked for them and people who hated theirs... I don' tknow where any of this will go or end up, but here we go.
Here we go.