The silence is heartbreaking

I probably shouldn’t be writing about someone who is steadfastly refusing to watch my latest story for “TechKnow.”  For 25 years, my parents always wanted to hear about what I was working on. From heartbreaking tragedies to dopey celebrity foibles, from cooking spots to courtroom dramas, my folks were interested. What was the Unabomber’s brother like? (Kind and generous.) Was Celine Dion nice? (Extremely.) Did I really have dinner with O.J. Simpson? (Yes, and I snagged his knife.)

No matter the story, my parents treated every one as if it was my first kindergarten art project. Until now. While I was telling Dad about my voice message banking story, he cut me off curtly and firmly. “I don’t want to hear any more about it.” Shortly after, we hung up.

Voice message banking is pretty much what it sounds like. You record messages in your own voice and save them for later. Unfortunately, that later is when you have lost all ability to speak on your own and need to use a computer to do the speaking. The recorded messages are uploaded and accessed through an eye-tracking communication device, a type of computer that lets you use your eyes’ gaze as fingers. It’s pretty cool. Unless you have to use one, which means you’ve probably got a condition that will shorten your life and rob you of the ability to share your thoughts spontaneously.

Message banking is an idea that now seems so simple, it makes you wonder why no one thought of it before John Costello, a speech pathologist at Boston Children’s Hospital. He’s been inundated with people who want to voice message bank with him. Why? Because the system he’s set up is his own jury-rigged system. There is no commercialized software. Tragically, Costello has to turn away many people because he doesn’t have the money or manpower to help everyone.

For our story, we interviewed O.J. Brigance, a 44-year-old former Baltimore Ravens football player. He has ALS, better known as Lou Gehrig’s disease, and speaks through his eye-tracking computer. The disease robs the body of muscle function — except for the eyes. Brigance still works for the Ravens, as an adviser in player development. Although he is trapped in his own body, you can feel his positive spirit. His eyes sparkle. He doesn’t let an opportunity to joke pass him by. He’s the kind of person my Mom labeled a “Chatty Cathy.” Except now he chats through a computer-synthesized voice, as he no longer has the ability to speak. He didn’t know about voice message banking until it was too late. So the first piece of advice he gives to anyone diagnosed with ALS is to voice message bank.

Chanda Brigance, O.J.’s wife of 20 years, says she misses his sexy voice (which I totally agree with — you’ll hear it in our spot). Sure, there are plenty of old clips of O.J. hosting the Ravens’ weekly TV show. But it cannot possibly be the same as hearing a personal endearment in his own voice. Chanda still has a recording of O.J. on her voicemail and plays it as often as she feels the need to. I’m guessing that’s pretty often.  

Joan Mikula can still hear her life partner, Holly Ladd, say, “I love you, Joanie,” as often as Holly wishes she could say it herself. Holly worked with John Costello and voice message banked 840 recordings, ranging from how much she loves Joanie to her daily demand for “Coffee! Coffee! Coffee!” to calling her pooch, Walker (who you’ll see responding instantly in our spot).

Holly was diagnosed with ALS about three years ago. Once a director of a nonprofit devoted to mobile health technology, she started banking six months before she lost her voice. As her speech began to slow and slur, she kept at it — singing “Rubber Ducky,” laughing, recording those endearments and “Holly-isms” (“Fuggetaboutit!” and “Ciao for now,” just to name a couple). She lost the ability to speak about six months ago. Now she communicates with a combination of her voice recordings and the computer-generated voice, which fills in the gaps. She told us that Joan would be a better arbiter of how important the banked messages have been.

Holding back tears, her lip quivering slightly, Joan spoke haltingly about how it makes her feel to hear Holly’s voice. With a satisfied but faraway look, she described what was really more than just what she felt about hearing Holly’s voice. “Emotional, happy, sad, bittersweet.” I have seen that look. That’s the wistful look my dad has when he travels back in time thinking about the woman he fell in love with more than 50 years ago, the woman he still loves. Then, in the part that gripped my heart, Joan said of Holly’s voice: “And the good news … I don’t have to lose it.” This was not just voice message banking for Holly. It is a gift forever, from Holly to Joan.

My parents’ home became just my dad’s house two years ago. It is filled with photographs of my mom: stunning when she met Dad at 17, a hot momma at 26 in a green paper bikini after three cesarean births, silly in a Halloween costume at 40-something, sillier still in rhinestone sunglasses at 69, sticking her tongue out in defiance of the illness that trapped and contorted her body until she could no longer move. For her last two years, her multiple system atrophy robbed Mom of her ability to speak. She could still laugh — and did. She would agree or disagree with blinks of her eye. One for yes, two for no. We’d joke that made it harder to say no than yes.

We never even knew to think about recording her thoughts.

While my mom was still alive, Dad would say he’d give anything, anything, just to hear what she was thinking, just for one day. He just wanted to hear her voice again — even if it was Mom reminding him (and not in a very nice way) to take out the garbage.

When the house became just his, Dad would listen to Mom on his voicemail, probably a lot more often than he admits. But one day, her message vanished. And that is why my dad does not want to watch this story. He doesn’t have that final gift to remember her by, the gift of her voice. So this spot is for everyone but Dad. It is a gift to the memory of my mom.