Back in the Saddle—Now With Uppydate!

Just one short hour after sending in my request for advice and/or an assist in understanding the scary, confusing world of Chemo Land, I received a reply from the MGH Interpreter Coordinator, Susan Muller-Hershon.

I would be happy to work with you. What about some oral interpreting whereby I would remouth what the clinician is saying with some sign language support?

Awesome! This is exactly what Jen does for me—a combo of oral 'terp and ASL. She won't be spending the whole day with us but she's working with TAB's team so she'll know when the big info dumps are happening and will be with me for those. 

Tremendous! I'm so relieved. Tomorrow would've been stressful enough without the bonus communication hurdles.

You may be wondering "Remouth? Oral interpreting? But you're deaf. If you can't hear the original speaker...?" I can lipread some folks fairly easily. A person who has loads of experience communicating with deafies understands the best rate of speech, how to enunciate but not OVER enunciate and all the other added bits which smooth out the bumpy, often formidable lipreading road.

Ahhhhhh. Now it's time for a bit of the grape. Cheers!

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Lemme tell you about what it’s like to be a late deafened adult in adverse chaotic circumstance. Specifically, when The Amazing Bob and I are having one of our MGH times.

On that New Year’s Day five years ago, when TAB had the heart attack which led to his quad bypass surgery, I was deaf. Deaf and brain fried with panic. All I could think to do was to ask the kids (Jen and Oni) to move their car so I could pull out and take TAB to the ER.

Jen said “No, we’ll call 911.” Oh yeah, they can use the phone!

And they did. The emergency med warriors from the fire department were here in LESS than five minutes. My beloved was stabilized, loaded into the ambulance (which arrived a few minutes after the first wave EMTs). Everyone was talking fast. I missed a lot since everyone was a bit busy saving my Honey Pie. OF COURSE and THANK BAST!

Point of the story—I didn’t know what was happening. I had to trust that everyone was doing the absolute best and smartest thing. They were but, boyhowdy, trusting is hard.

The Romantics—making out while in hospital.

And how egotistical am I? Me NOT being intrinsically involved in TAB’s care means there’s going to be fuck ups? Sheesh! No. That’s truly not what I was thinking or feeling. More, I just wanted to know what was happening at every point along the way. I didn’t want to miss a thing, no matter how small. Why? That’s the love of my life you’re working on there! Also too, the more I know, the better help I can be later when I’ve got him back at home.

On that night, five years past, I mostly stood on the sidelines, roiling with fear and anxiety. Every now and then someone would take the time to speak slowly and clearly, directly to me. Mostly the EMTs and docs spoke with Jen and Oni who would then pass news, info and questions on to me. Thank Bast for them but it’s frustrating to be one step removed.

So then, here we are, back in the MGH coral (OK, not this morning—today we’re home) and I’m in the same spot. This time things are moving a bit slower or will be. Mass General has a bunch of different set ups for us deafies. I like their CART service the best.

CART (Communication Access Real-time Translation) Services
Using CART, professional captioners type the speaker’s words into text, which can be read on a computer screen.

They also have ASL ‘terps available 24/7.

Due to a last minute change in appointment days/times we didn’t have time to request  either for yesterday’s marathon of office convos and tests BUT Jen was able to ‘terp at the morning’s very important meet and greet with Doctor Abramson and Oni was there to help during the afternoon testing and the What to Expect When You’re Expecting Chemo session with Bob’s awesome assigned nurse, Brianne.

I just sent an email to MGH’s head ‘terp to ask for her thoughts and ideas about tomorrow’s big all day first session chemo-a-thon. I allowed that:

I'm a late deafened adult. My ASL is OK but weak. I've a reasonable vocabulary but my grammar blows.That and I'm just slow. My lipreading's pretty good BUT, of course, not functional in environments where lots of folks are talking at normal/hearing rates.

So, we’ll see what she has to say/offer.

Being a late deafened adult means that I don’t fit, language-wise, into any neat category. Joy. I always wanted to be special but this isn’t exactly what I had in mind.