In My Head

Both of my kids have celiac disease, an autoimmune disease that makes their bodies react to gluten. The only treatment is a gluten free diet. As my husband has taken to saying to restaurants when ordering food with the kids, “This is medical-level gluten free, not Hollywood gluten free.”

When my daughter was diagnosed just before she turned 3 1/2, we decided to heed the advice of experts and avoid a completely gluten free house. We didn’t want her to be in a bubble; she had to get used to being a minority in a world that eats gluten. This philosophy mirrors the one I grew up with; my parents decided to raise my deaf sister and I to lipread and speak so we could function independently in society. I was taught to advocate for myself, and am trying to instill that skill in my children as well.

We did make our house a safe place. We have a GF counter, toaster, shelves in the pantry, shelves in the basement freezer, and clearly marked items in the fridge. Making dishes like GF pasta and gluten pasta in separate pots with the same sauce (GF food is expensive!) is second nature to me now; I have the GF pot and spoon on the left, the gluten ones on the right, and never the twain shall meet.

I think this is a large reason why my kids are healthy and comfortable with their celiac disease. As GF products expand and improve, food has gotten easier as well.

But it’s still hard. Samara and I agreed yesterday that if there was a pill that would make me hearing, of course I would take it. Similarly, if there was a pill that allowed her to eat gluten again, she would take it. Hopefully such a thing will become reality in her lifetime.

Until then, she said she has a list of Best Gluten Smells. This includes bread, lasagna, bakeries, and animal crackers. I reminded her that there’s a GF bakery in town that smells amazing, just like any other bakery. She agreed and said that every time she walks in, she thinks, “Wow, I can eat anything in here!”

Luckily there is a GF alternative for everything on her list, though it’s not quite the same. There’s always her Best Smells list, which has on it “real hot chocolate, not the Swiss Miss kind.” That would be on mine too.

What would be on your list? And please don’t say Pumpkin Spice…

The ability to lipread can be a blessing and a curse. Twenty five years later, I vividly recall driving my grandfather home and being on the tail end of a truck driver’s angry rant. As a newly licensed driver, I was cautious – even more so with my taciturn grandfather in the car. I was taken aback when I experienced my first road rage incident. “You fucking bitch!” came through loud and clear, even though I was the only one who “heard.”

Flipping the bird, however, is universally understood – except for deaf kids, perhaps. When we were little, my sister and I thought it meant “baby.” After witnessing us use the greatest insult we knew, our parents sat us down and proceeded to enlighten us. That day, not only did we learn about “the bird,” but we also learned about the more colorful versions of “donkeys” and “cats.” Of course, before we were told all the swear words, we were cautioned never to use them. Our parents wisely figured better them as a source than wherever we got “baby” from.

And now, to my parents’ great pride, I have a potty mouth. But I try to use it judiciously. The key word being “try.” My 13-year-old has asked when she can swear. I told her to wait as long as possible, because once you start, it’s hard to stop. We did give her permission to use “hell” when appropriate. She’s gotten good at substituting “crap” for more damaging words, and using the right intonation and emphasis to make it sound worse than it really is, like “What the CRAP!?” and “Crap you!”

When my daughter voluntarily interprets, it’s an added bonus when she gets to swear in the process. Hmm, perhaps that’s why she’s doing it voluntarily!

To lessen the damage, I’ve tried using fictional curse words from TV shows, like “frak,” or “frick,” which are close enough to be slightly satisfying. As a family, we’ve had fun coming up with other alternatives, like “Shish kebob,” or more accurately, “Shhhhish kebob.” “Shhhiitake mushroom” is another one.

But when we mean business, we resort to the time-honored standbys. My daughter’s procrastination — especially around bedtime — is so bad (or so good, depending on your perspective) that my husband’s common refrain is, “Get the fuck in bed!” For his birthday, we got him the popular book, Go the Fuck to Sleep by Adam Mansbach, which reads like a children’s book for adults. Take this excerpt:

The owls fly forth from the treetops.
Through the air, they soar and they sweep.
A hot crimson rage fills my heart, love.
For real, shut the fuck up and sleep.

Naturally, we couldn’t resist getting him the sequel, You Have to Fucking Eat, which applies to our picky eater son.

Truth be told, I’d rather eat my shiitake mushrooms and shish kebobs than try to get them trending as #alternativecursewords. The other thing I’m sure of is that this is one fucking bitch who won’t make the mistake of calling her kids “baby.”

These pictures were taken at a friend’s Bat Mitzvah. I posted the black and white one on the personal blog I keep about my kids. When I first saw these photos, I considered them to be decent ones of me (for once) and liked that they were candids. I didn’t give them much thought beyond that.

That is, until a speaking deaf friend of mine was catching up on the kids’ blog and texted me, “LOVED, LOVED that pic of you reading Doran’s lips. I hope someone captures a similar pic of me doing the same with one of my kids. It’s so poignant.”

I went back and looked at the photos and realized she was right. In the color photo, I was standing up (in wedge heels, no less), so I had to bend down to lipread/understand Doran better. In the other photo, we were at the bar getting Doran a drink, and I had to angle myself for optimal lipreading. These are things I do every day, actions I’ve undertaken my whole life, so much so that they’re natural. Now these photos take on so much more meaning!

When I told my friend that I hadn’t thought about the photos this way, and that it may have registered but subconsciously, her response was incredulous. “What??? How could you not think of it that way??? It was the first thing that came to my mind when I saw it. Wow, I think you may have forgotten that you read lips! (I know, it’s become so innate to us that we don’t think about it anymore. But it’s so empowering and poignant to see it in a picture – especially between mom and child.)”

I thank her for reminding me that sometimes it’s important to take a look outside myself to remember the little (and not so little) things I have to do daily to compensate for my disability. It’s not always easy, and should be recognized. What better way to do so than in this perfect representation of my life, captured so beautifully?

I gave this eulogy at my grandfather’s funeral this morning. He died just shy of his 98th birthday. No words can quite capture how special he was.

I was lucky enough to grow up in the same city as all four of my grandparents. I was even luckier to have one with me for 41 years. He was the only one of the four who met his great-grandchildren. He was called Lucky J for a reason.

No wonder he beat me most of the time in gin, one of our favorite things to do together. He always told me I shuffled too much – “Enough already!” he’d say, while I complained that he barely shuffled at all.

When I think of Grandpa, I think of an eternal optimist, someone who loved to laugh and make others laugh, and someone who was fun to be around. After all, how many people can say they gave their grandpa – known for his dirty sense of humor — a subscription to Playboy as a gift?

Grandpa never had great hearing, but it was ironic that despite two deaf granddaughters, he liked to bluff. If you asked, “What movie did you see?” he’d nod and smile. You don’t mess with the master; I knew when he was pretending to understand!

Grandma and Grandpa used to wear matching outfits – you know like those jogging suits you wear to do everything but jog? I bet they’re wearing them now, holding court at a bowling alley in the sky.

A long, full life is all any of us can hope for. Grandpa was a winner to the end.

I recently returned from my 19th AG Bell Convention. The Alexander Graham Bell Association for the Deaf and Hard of Hearing is an organization that has been a part of my life since 1980, when my parents discovered it after my diagnosis. Thank goodness they did, because it has had a huge positive impact on my life and many others.

My family attended every biennial convention — always held in a different city — and planned family trips around each location. Initially, the goal was to further our education by doing, like when we rode every type of transportation as we traveled from Portland, OR to San Francisco, CA. I still have vivid memories of sleeping on a train, or trying to, anyway. Now my parents tag along as I bring my husband and kids.

Even though my younger sister was deaf, there’s a lot to be said for meeting other speaking deaf peers. AG Bell’s mission of advocating independence through listening and talking is so important, especially when the critical language development window is concerned. The organization is comprised of professionals, parents, and deaf adults. Before email, we used to write letters back and forth. Now these long-time friends have become my family, and each convention I love picking up where we left off and meeting new faces.

After my sister died, we established an AG Bell scholarship fund in her name. Several conventions ago, we started using that money toward a Dena Goldstein Mixer, with the goal of having deaf teens interact with older deaf adults so we can act as mentors and support for one another. The social component of the conventions was Dena’s (and my) favorite, so this was a perfect fit.

This year’s mixer was the best yet. A few parents came with their kids, likely to ensure their attendance. I approached one family and found out they were attending their first convention. The teenager with hearing loss didn’t know anyone else and seemed shy. My friend Rachel — my oldest AG Bell friend, in fact — walked by, so I pulled her over to introduce them. After I explained this was her first convention, Rachel beckoned for her to follow, and brought her over to a table with other deaf teenagers. The next thing we knew, they were all talking animatedly.

The last day of the convention, a mother approached me after one of my sessions to thank me for the mixer. She couldn’t speak, she was so overcome. She explained that she had two deaf daughters. The older one is social and has done AG Bell’s Leadership Opportunities for Teens Program, or LOFT. Unfortunately, it was created after my time, so I couldn’t benefit. Among other things, it improves teens’ confidence and advocacy skills, and the groups become friends for life. The younger daughter has no friends and didn’t want to come to the convention or do LOFT. The mother practically dragged her to the mixer, where another teenager approached her daughter. This was life changing, the mother said, because the daughter was then forever texting her new friends about meeting up at the pool or for breakfast. She now wants to do LOFT and is like a whole new person. Needless to say, we were both crying during this conversation.

This is the point of the mixer and why we do it. This is why I attend conventions. As one of my friends said over the weekend, it’s hard work surviving in the hearing world. It truly recharges our batteries when we’re able to be in a fully accessible, understanding environment, with others who get it, and where we can truly be ourselves.