Lessons from my daughter

The first time I heard of the word pansexual was from my eighth grader. I had to look up the definition. My husband thought it was a Dr. Who reference, which it is, but it’s also one of many sexual identities of which my peers and I are likely ignorant.

A later conversation with my daughter resulted in more homework. Words like “demisexual,” and “heteroromantic” were foreign to me. Apparently these terms are being discussed among her classmates. I told her that most of my counterparts probably wouldn’t know what they meant either. “You’re from a different generation,” she oh so kindly explained.

Ouch.

It’s a different world now, that’s for sure. I applaud their knowledge and openness, and hope that this will increase self-awareness and confidence.

While my daughter may not know who (the original) Holly Hobbie is (hello, childhood bedroom wallpaper!), at least she’ll be familiar with Captain Jack Harkness. And I’d rather she know the latter.

El Deafo

It’s not often I get to tell an author in person how much her work means to me. I had the opportunity to do this recently when I went to Pittsburgh Arts & Lectures Kids and Teens with my son to see Cece Bell.

Cece is an author and illustrator currently on tour for her graphic memoir El Deafo. Among the many accolades it has received, it was listed as one of the the NYT Notable Children’s Books of 2014, NYT Notable Middle Grade Books of 2014, and is a 2015 Newbury Honor book. What’s great about all of this attention is that this book has entered the public consciousness.

When my parents gave it to me soon after its release, I hadn’t heard of it. I actually kept it on the shelf for a long time, assuming it was about a deaf person who used sign language to communicate. Every time my parents visited, my mom would ask, “Have you read El Deafo yet?” When I finally admitted my reason for procrastinating, she told me it was actually about a deaf person who spoke and read lips. Well, then!

I gave the book five stars on Goodreads. My review:

When my mom loaned me this book to read, I was reluctant because I assumed it wouldn’t show the speaking deaf perspective and would be all about sign language. It’s ironic that I made the same mistake that everyone else makes about me (assuming I sign), but in my defense, it’s rare that this perspective is shown – and with such poignancy and humor. I kept saying “Yes!” out loud because I could relate to many of Cece’s experiences. Unlike Cece, however, I hated the Phonic Ear. I used to always complain, “Just because it makes it louder doesn’t mean it helps!”

I’m glad Cece learned how to share her superpowers and be comfortable with them, but I couldn’t help but cringe a little at how her classmates “used” her.

The note from the author at the end is also on point.

I made my kids read the book too, because I wanted them to get a better sense of my childhood. Cece’s book illustrates in wonderful detail what it was like to lose her hearing from meningitis at the age of four, and follows her ups and downs through elementary school.

A speaking deaf friend of mine also gave this book five stars. We both liked it more than our kids did. In her review, she wrote, “I expected to be disappointed by the book, figuring it would go down the all-to-predictable path of sign language. However, it turned out to be a very realistic representation of what some of my childhood was like. Cece tried sign language but it didn’t resonate with her and I believe this is the first time I have ever seen sign language mentioned in a book (fiction or non-fiction) on deafness where it wasn’t portrayed as a major part of the deaf person’s life. This book will go a long way to dispel stereotypes that every deaf person signs.”

The note from the author at the end that I referenced? Cece writes about differences in deafness – the cause and level of deafness vary, and so does communication. She talks about the Deaf community, or Deaf Culture, where sign language is the main mode of communication and deafness is viewed as a condition that shouldn’t be fixed. Deafness is considered their main identity, whereas for people like me and Cece, it’s just one part of who we are. In her note, Cece emphasizes that her experience is hers alone.

This is why I was surprised when she shared a different point of view in her talk. She said the school she attended — which had other deaf children — believed in only teaching them how to speak and lipread. They felt if sign language was taught, it would be a crutch. Cece said she doesn’t agree with this now, and wishes she had learned sign language. During the Q&A phase, someone asked what the Deaf Culture reaction was to her book. She admitted that she was scared for the potential fallout. Maybe she made this comment about sign language to appease those folks, but I wish she had tempered it a bit. Especially since research shows that the mostly signing “total communication” approach just isn’t as successful as other modalities.

One of my friends — a parent of two deaf boys with cochlear implants — attended the talk with her older son and had a similar reaction as me. She felt this was a somewhat careless way to appease Deaf Culture. “My (admittedly biased) perspective is that she wouldn’t be where she is now if she’d learned sign back then,” she said. “I truly believe [my son] wouldn’t be where he is now if he’d gone to a sign language program. I wish she had just stuck with ‘everyone has their own story and this is mine.'”

Exactly.

Otherwise, Cece’s talk was great. She had the audience laughing throughout. She started off with an experiment. When her back was turned, we all yelled HELLO! as loud as we could at the count of three. With her hearing aids on, she heard us. Then we did it again, with her hearing aids off. Naturally, she couldn’t hear us. I think a better experiment would have been to have some volunteers play the game of Telephone to demonstrate how difficult lipreading can be.

I got to see my nemesis, the Phonic Ear, again as Cece actually had hers from childhood. She put it on to show how bulky and embarrassing it was to wear.

Cece was asked why she wrote her memoir in graphic novel form. She said it was the perfect medium to tell her story because of the speech balloon, which allowed her to visually show what life can be like for a deaf person. An empty speech balloon, for example, shows that little Cece isn’t hearing anything. A panel with the audiologist has him saying, “RAAY YOE HANN WAH OO EER AAH BEEP!” And one of my favorites is the panel in which he adjusts the dial on her FM system and the text shows the volume increasing by going from light to bold.

An audience member asked why Cece used bunnies instead of people. She explained that it’s a great visual metaphor for hearing loss: ears that stand out, especially with the cords and ear molds going into them. Teachers often forgot to turn their microphones off, so Cece was able to hear them in other parts of the building, like the bathroom. Because of this, she began to think of her deafness as giving her superpowers.

Interestingly, Cece wasn’t comfortable with her deafness until recently; she didn’t like to advocate for herself. But an incident at her local Kroger turned things around and started her on the path to writing El Deafo.

A boy in the audience asked if she planned to write a sequel (stealing my question!). She said she has lots of ideas but hasn’t done anything yet.

After the talk, we waited in line for a long time to get her autograph, but it was worth it. I told her that I was born three years after her in the 70s, and that her book was meaningful because it mirrored a lot of my own experience. Gesturing to my son, I said that it was great having my kids read it to gain a better understanding of my childhood.

She asked what I wear, and I told her a cochlear implant and hearing aid. I alluded to the fact that she’d benefit more from a CI than me, because (unlike me) she was post-lingually deafened.

I also encouraged her to write a sequel. Every stage of life brings different challenges, and I’d love for El Deafo to continue to educate and entertain.

I’m a writer, but not an illustrator. Cece is both, and I thank her for bringing our shared experiences to life in a way that I never could.

Would you like some angst with that?

Ordering at a drive-thru is something many people take for granted. But a viral video shows the simple act of ordering a mocha frappuccino from Starbucks made possible because of technology. With over 6 million hits, people are realizing that drive-thrus — which were created to help with efficiency and convenience — are the opposite for people with hearing loss.

“I never thought about the fact that you can’t order at a typical drive-thru because you can’t hear what they’re asking, even though they could hear you!!!” wrote a friend in an email.

I don’t rely on sign language to communicate like Rebecca King, the Deaf patron in the video. But I can’t use drive-thrus either – not that I haven’t tried. I’ve skipped the order window and just driven up to the take-out window. I’ve also spoken into the microphone and said, “I’m deaf, so I’ll just pull up to the next window.” Or I’ll give my order and then repeat it when I see the employee. If I’m feeling especially brave, I consider the process an auditory rehab exercise and try to understand what the employee is saying. It’s a lot easier when put into context – like the famous question from McDonald’s: “Would you like fries with that?”

But let’s face it – drive-thrus are the ultimate in laziness. Sometimes it even takes longer to order at the drive-thru than it does to get out of the car and walk inside. When my kids were younger, it was a dilemma: Do I wake up a sleeping child or take a child out of the PIA carseat or deal with the hassle of the drive-thru? If the weather is bad, drive-thrus are definitely appealing. And since they exist, it’d be nice to at least have the option to use them.

Starbucks announced in mid-October that they were adding video screens to 2,400 cafes with drive-thrus. It’s not clear how many locations have this currently in place. The St. Augustine, Fla. Starbucks that King frequents is located near a school for the deaf and blind, so it has worked to accommodate those customers. Four of that location’s baristas know ASL.

This scenario just isn’t possible in the real world. This is another reason why I’m glad that my parents decided that my sister and I would learn how to lipread and speak. I can still benefit from video screen technology even though I don’t sign, because it would allow me to lipread.

Drive-thru employees always have a video screen at their end, so theoretically, it should be easy to make it two-way. For those (many) locations that won’t have employees who know sign language, perhaps a texting/typing option could be added – either by using a pull-out keyboard, or better yet, our own phones. Wouldn’t that be a great app? Anyone? Bueller?

In the meantime, I hope other companies take note. After all, improving accessibility will only increase profits. Starbucks certainly has the money to implement this technology, so the cost is likely negligible compared to the eventual payout.

Can I order a video screen, please?

The thief in my life

There’s a thief in my life that follows me wherever I go. Sometimes its presence is sudden, but other times I can tell when it’ll strike. It steals things from me that I can never get back.

This thief, this unwanted visitor, this literal albatross around my neck, is the scourge of my existence: the dreaded M word. Not Metallica, though that’s a good guess (imagine heavy metal pounding away in your head), but Migraine. I need a better name for it, but for now, imagine a long stream of unleashed curses. Much like Metallica, actually.

I’ve gotten migraines for years, a gift handed down from my paternal grandmother who had to lie down in a dark room when one came on. She later died in her 60s of a suspected brain aneurysm, which scares the living hell out of me.

Before I had kids, my migraines were well controlled, thanks to a blood pressure medication that worked 100 percent with no side effects. When I was pregnant, the migraines stayed away (and no, don’t you even dare think it!). As much as I love my kids, having them messed up my body chemistry causing the migraines to return with a vengeance. The only possible light on the horizon is that menopause has been known to help. Yay menopause, bring it on!?

For years, I’ve kept track of my headaches by marking on a calendar the frequency, possible triggers, and my exercise habits. The binder is ready to explode, as I have years’ worth of patterns in there. Lest I get too excited that my migraines are finally decreasing, I only have to look at my charts to remember that certain times of the year are better than others.

Because there’s no cure for migraines, my neurologist and I have had to do a delicate dance to find the best possible combination medications to make me functional. I used to get over 15 migraines a month; thankfully, the number is now lower. But as a typical migraineur, I’m also medication sensitive. Any rare, unusual side effect that’s listed, I’m likely to experience.

Migraine statistics are pretty damning. Nearly 1 in 4 households have someone with migraine, with about 18 percent of American women sufferers, according to the Migraine Research Foundation. More than 90 percent of sufferers are unable to work or function normally during migraine, which is called “an extremely debilitating collection of neurological symptoms.” It’s not just a bad headache.

I don’t get an aura like some people, but I’ve learned my particular symptoms. I’m still learning, actually; within the past year, I’ve noticed that when I experience vision issues, that’s a precursor. My headaches start in my neck, and the sensation of pain or heaviness always brings with it the knowledge of what’s to come. I have some triggers, but of course they’re mostly ones I can’t control. Lack of sleep and stress I can sometimes alleviate, but hormones and weather changes like barometric pressure I can’t do a damn thing about. If I get overheated or exercise a certain way, my head retaliates.

I sometimes wonder what life would be like if I didn’t always have to worry about getting a migraine. If I have a pain-free stretch, I get cocky and revel in how “normal” I feel, but then immediately know I’ve jinxed it. Every event, big or small, I wonder if the thief will return. It likes to steal time with my family and friends and keeps me from fully living life.

I do what I can to keep migraines at bay. I take my daily medication and stronger medication when needed. I exercise as often as possible. I’ve had to develop strategies for working during migraines, though it helps that for now, I work from home. As long as I make my deadlines, it doesn’t matter when I do the work.

But no matter what I do, migraines are persistent. Inevitably, I end up feeling frustrated and depressed because I can’t remember what it feels like to not have one, or because I’m sick of having this weight that comes and goes as it pleases.

No one truly understands until they experience it for themselves – much like losing a loved one. This Huffington Post article about what not to say to someone with migraine is dead on. People mean well, but after all these years, I know what does and doesn’t work. I don’t drink red wine because it’s bad for migraines. You have a remedy you’ve heard of? I’ve tried it. Exercise is great, but only when I’m pain-free. Any kind of physical activity during or after a migraine is out of the question because it’ll just make it worse.

Getting a migraine isn’t just something that takes me out of commission for a few hours. It can be a multi-day process. I might fight one for a few days, which means operating at less than optimal strength. Once I get one, I’m knocked out for an unknown period of time. Sometimes it goes away for a while, but it can linger. Sometimes the pesky devil will go away only to come back a day later. Occasionally, it parties in my head for over a week. And what happens after hosting a party? I’m worn out and exhausted, and still have detritus lying around.

I know I can’t live my life looking for the thief around every corner. But when I’m in the middle of an attack – like now – which stole precious time with friends, I don’t know any other way to be. So I write and do what I can until the day when I can fling that *&#@ albatross across the sea.

Fall traditions

Ever since we had kids, our annual fall tradition has been to go to a local farm where we indulge in expensive fall activities and pick pumpkins from the patch. Because nothing says fall like going down a 100 foot slide, playing in a bin of corn, or getting lost in a hay maze, right?

Apparently this practice even has a name: agritourism. Farming can be a difficult profession, and I don’t blame farms for trying to supplement their income. But the practice has become so commercialized, with one local farm advertising a bounce house, balloon chase, rock wall, and baseball challenge among their offerings. Because nothing says fall like chasing balloons, I guess.

When I was a kid, my family’s fall tradition was to go apple picking with family friends, followed by a pizza dinner. In Western NY, apple picking meant climbing trees or tall ladders. Here in Western PA, the trees are so small that ladders aren’t needed. There’s no work involved, and it just isn’t the same.

Now that my kids are 13 and 10, the allure of farm activities has faded. When I asked if they were ok with picking pumpkins from a grocery store, they said yes. The obligatory picture of them in a pumpkin patch is no longer; it’s the end of an era.

My next question was to ask if they wanted to carve their pumpkins. My husband interjected, “You mean, do you want me to carve your pumpkins?” making it clear this was the last thing he wanted to do. I tried to help by suggesting they decorate the outside of their pumpkins, like many people now do. The kids didn’t care; they said they wanted to make jack-o-lanterns. Maybe we can at least steer them toward smaller pumpkins, and be thankful that at least one fall tradition remains.