Deaf Sentence

My friend Sammy in Cornwall, UK knows how much I love to read, and she sent several books to me for Christmas. The very first one I grabbed hold of was Deaf Sentence, by David Lodge. Friends that know me well enough will remember that my parents were Deaf. I was intrigued by the title.

I started howling with laughter before I’d read a few pages. This is a very funny novel about what it’s like to lose your hearing as you get older. What set me off was the conversation Desmond had with his wife Winifred (Fred). She’s talking to him and he’s missing important clue words and misunderstanding her. She must repeat herself, sometimes to the point of “Oh, never mind!” It reminded me of conversations my husband and I have had! It can be hilarious and tragic at the same time.

Intertwined with Desmond’s difficulties navigating the hearing world now that he’s nearly totally deaf is a comedic side story involving a young graduate student pursuing Desmond to help her with her Ph.D. thesis. Think of Alex as a female George Santos and you can only imagine some of the complications she causes not only for Desmond but another professor she’s roped in.

Loss of hearing and the isolation it can cause is a thread throughout the book and that’s what I wanted to turn to. It’s scary to lose a sense you’ve had since babyhood. Some people do fear losing their hearing, believing then they won’t hear loved ones’ voices or music or birdsong anymore. I’m not as afraid of that because I grew up with Deaf parents. I am terrified of losing my sight.

I recommend this book to anyone. You’ll gain some insight into later age hearing loss and have a few good laughs as well.

I remember when I began learning American Sign Language at a Methodist Church for the Deaf. One of my classmates was an elderly woman named Myrtle. Myrtle was like the Desmond character in the book. She’d begun to lose her hearing gradually early on and was nearly stone deaf in her 60s. She had fine, clear speech but was isolated because she could no longer follow the conversations of family or friends in group settings. She was desperate to be able to communicate and had decided to take sign language. Sadly, I also learned this was Myrtle’s 3rd or 4th attempt. Her fingers were also twisted with rheumatoid arthritis, and it was difficult for her to form letters. Remembering the signs were beyond her. I felt sorry for her. Everyone in the class and the teacher were helpful, but she just couldn’t seem to get it down.

I mentioned earlier that some of the scenes between Desmond and Fred remind me of myself and my husband, Ted. He is mostly deaf from environmental noises. Like Myrtle, we've tried to teach him some fundamental signs but he has a hard time remembering how they're formed. His hands are also twisted with arthritis and overuse so some of the signs are difficult to make. He compensates well with his residual hearing and by making sure he faces the speaker.

Becoming deaf at a later age reminds me of the Big D, Little d designations. When you see big D Deaf, it means a person who was born deaf or became prelingually deaf. Before the advent of legislation for people with disabilities to have equal access to jobs and educations, Deaf children went to special schools. There they learned sign language from teachers and classmates. Deaf culture began in Deaf residential schools. Deaf people do not miss hearing. They are proud of themselves, their language, and their culture. American Sign Language (ASL) is now recognized as a foreign language with its own rules and syntax. It isn’t English.

Small d deaf refers to those with hearing loss but don’t identify with the Deaf community. Maybe they lost their hearing later in life, like Desmond. All their lives, they’ve only used spoken language and interacted with the hearing community. Learning to sign isn’t easy at an older age. Some deaf people were raised by hearing parents that wanted their children to assimilate easily into the speaking community. As children, they used lipreading to communicate. In the 1980s, parents willingly tried the use of cued speech, which uses a set of handshapes to help distinguish sound-alike words. In the 1990s, there was the miraculous cochlear implant and parents jumped on that technology almost with a sense of desperation.

Some deaf children become Deaf in their teens or later years. How does that happen? I worked in a school district that mainstreamed deaf and Deaf students into the hearing population once they got to middle school. A whole new world opened for deaf children and many quickly picked up ASL. At the age of 16, some of the deaf students demanded to have their individualized education plans (IEPs) changed so that they might have ASL interpreters. They began to learn about the Deaf culture from their classmates. As adults, they moved into the Deaf community, meaning they’d go to Deaf clubs and churches.

I. King Jordan was the first Deaf President of Gallaudet University. He wasn’t born Deaf. He was involved in a motorcycle accident at the age of 21 which severed the nerves in one ear and damaged them in the other. As traumatic as his loss was, he didn’t give up. He went to Gallaudet, having never met a Deaf person before and not knowing any sign language at all. Deaf people are generally very willing to help someone struggling to learn their language and he was able to move up to the point where he was considered a candidate to become President of Gallaudet University. Read more about him here.

This was much more involved than your usual book review but sometimes I just must travel where my thoughts take me. 

When it's time to stop driving

 Although we don’t like to think about it, we know there will come a time when a parent shouldn’t drive anymore. Convincing a parent to give up driving is traumatizing, especially if Mom or Dad live in a rural area with limited access to mass transportation. Driving is such a necessity to get to doctor appointments, go banking or grocery shopping, or for any other activity.  Parents want to be independent and don’t want to depend on their adult children to drive them around. I was reminded of all this when I read this article from the Arca Max Senior Living newsletter.

Twenty years ago, my parents were living in a rural area of Maryland. My brother lived not too far away, close enough to be able to help when needed.  Dad would grudgingly ask for help making repairs but never asked for a ride. In retirement, he took pleasure in long walks and daily trips to the closest shopping center to buy lottery tickets.

Dad had glaucoma. His father, my grandfather, became blind from glaucoma. As far as we knew, Dad was taking drops to keep his glaucoma under control. What we didn’t realize was that he’d stopped taking the drops because my parents couldn’t afford the cost of theprescriptions. We learned when Mom appealed to my brother and me about Dad’s driving.

He had lost most of his sight but refused to stop driving. He needed to drive so he could get his daily lottery tickets and whatever groceries might be needed. At the time, there was no online banking, so he needed the car to make deposits or withdrawals. He needed to drive my mom to her doctor’s appointments.

However, Mom didn’t want to get in the car anymore. She was afraid that Dad would get into an accident because he could barely see. She used a relay service to call my brother and ask him to take her for her appointments. She confided in him that she felt Dad should stop driving.

This was too difficult to pursue alone for many of the reasons stated in the article I read: Dad was stubborn and would become angry if giving up driving was suggested. It could cause a break in the parent-adult child relationship. My brother called me, and we devised a plan.

My husband is a loving, caring man and suggested we convert part of our house to a private room for my parents. We were aware how hard it was for seniors to stay afloat if they only received social security to support them. We also live in a rural area in New Jersey with limited transportation and could well imagine the isolation and loss of independence my dad would feel. If my parents lived with us, we could take Dad to get his lottery ticket every day and just use the excuse that we needed to get something too.

With that in mind, Ted and I drove to my parents’ place. My brother met us there. Our plan was to get in the car with Dad to observe his difficulties. My brother confirmed that Dad was almost blind. My parents were expecting us; this was supposed to be a family visit.

I was shocked by how blind Dad really was. To see my signs, I had to get up close and sign almost into his eyes. Sometimes a sign requires movement to other places on the body. Dad would hold my wrist when my sign needed to move out of his eye range. American Sign Language has been Dad’s primary language his whole life. When he held my wrist to follow my hand, he knew which word I was trying to convey by rote.  I didn’t say anything, but I was horrified.

Getting down to the matter had become easier. We didn’t make it about age. My brother and I focused on our concern for my parents’ safety. Mom sat quietly, watching. Dad’s response was predictable: He needed to drive because how else would he be able to get groceries, bank or buy his lottery ticket?

At that point, Ted and I stepped in and made our offer. Come live with us. We love to walk on trails in the beautiful county and state parks. There’s a store within walking distance to be able to purchase lottery tickets and other items. Dad’s eyes lit up with joy and relief. He threw his arms around us as Mom’s eyes teared up with relief. Dad gave his car keys to my brother.

Ted and I went back to New Jersey and began converting part of our house to an efficiency. It would be completely private with a separate entrance. We couldn’t afford to add a bathroom or kitchen to the room. There was a bathroom adjacent to the new room, as well as our laundry room. We could share the kitchen and they would have the run of the rest of the house whenever they wanted to socialize. Ted did almost all the work himself, installing wooden rails in the halls and down to the new room for my mom, who had balancing issues.

About a month or so later, the room was ready.

And then Dad died.

Mom said they were watching TV together. She got up and went into the kitchen to make tea. She couldn’t hear the whistling kettle and so she watched for the rising steam.  When she got back to her recliner, she saw that Dad’s eyes were closed. She thought he was asleep and so she watched TV a little longer. When the program was over, she tried to wake Dad. He was already gone.

The death certificate said he passed away from atherosclerosis. Mom said later he’d stopped taking his cholesterol and blood pressure medicines too because of the costs. Still, when we were going through his things, I found a hidden note which said “I don’t want to go. I want to stay here.”  It gave me a deep chill.  Had he just given up because he could no longer drive?

My mother-in-law was in a somewhat similar situation when she had to junk her car. She was in her late 80s at the time and although she had the normal lapses of memory and perception older people are apt to have, she was still sharp and active. We really do live in a remote part of New Jersey. Going to a doctor or a mall or a movie theater involves a drive of at least 30 minutes. Mass transit is virtually non-existent here. She wanted a new used car but is on a fixed income.

Our thought was to pool resources among her family: Ted and I, his brothers and sister. They all said no, she’s too old to drive anymore.  Meanwhile, my mother-in-law was having a stressful time trying to get rides to all the places she needed to go. It was a no-brainer. A good used car became available and so we bought it for her. 

She’s 90 now and uses her car to get to local places like church and shopping.  She is aware of her limitations and when a doctor is 30 minutes away, she’ll ask if Ted can drive her. He’s always accommodating, and this has been beneficial for her and for us.

Someday, Ted and I will be in a similar situation ourselves. I don’t think about it because it really is traumatizing to lose the ability to drive. Someday it will happen, but not now.

Still Celebrating

 The pre-Christmas Day season was weird. Christmas Eve night, even though we had our heat up to 70F, it felt as if it was 30 degrees colder in the house. That's because we need to have our drafty windows replaced and because of the wicked winds that came with the horrendous storm that hammered the country.  On Christmas Eve night, my hubby TB and I were bundled up like a couple of Eskimos.

I wanted to post this awesome story about a signing Santa Claus. This article really made me choke up, thinking back to stories my parents told me about their growing up years and how they'd spend Christmases. As I've written before, my parents were both Deaf and grew up during the Depression/World War II years. In those days and even up to today, Deaf children are often excluded from family holiday activities because of a lack of adequate communication. In the last 20 years or so, inclusion has been ever so much better. I am so happy to see that this Deaf Santa brings such joy to the children who visit him.

That article appeared on Friday, and my attention was diverted by what the storm did to a tree in our back yard.

I was wrapping Christmas presents for TB when I heard a ripping sound above me. I thought for sure the fierce winds were pulling shingles or even part of our roof off the house. In actuality, the ferocious winds tore our tree right out of the ground. Half of it is on our side of the fence and the other half is in our neighbor's yard. Gulp.

Luckily, it didn't damage the house but it did mess with the pool. TB and our grandson are going next door tomorrow to start cutting the tree up. We thought our insurance would cover the damage to our neighbor's pool...but NO. They don't. Our neighbor is very laid back about the whole thing. We've been neighbors for over 20 years and he knows we'll make it right. TB is very skilled with sheet metal and other crafts and plans to fix the pool too. This way, our neighbor won't have to pay a deductible to his insurance companies. Third party carriers are vultures.

Now it's Christmas Day and we had a surprise visit from our 18 year old grandson, the same little boy we went hiking with for years. He's all grown up, got himself a full-time job and a big old truck to drive around. We are so proud of him. I'd share a picture but was so surprised at the visit I forgot where I put my phone.

Other happy moments from Christmas Day:

It took all of Monday to recover from all the fun, and even now I'm not quite ready to get back into the busy swing of things.  All our Christmas decorations and ugly sweaters will stay up and be worn until TB's birthday, January 6th a.k.a. All Kings' Day

"How Can They Dance If They Can't Hear the Music?"

 

How Can They Dance If They Can’t Hear The Music?

This was one of the few “How Can They” questions I didn’t get growing up.  After I got my wedding (first marriage, 1985) proofs, I proudly showed them around. Some people who knew my parents were Deaf but weren’t really close with me would see the picture of my father and me dancing to “Daddy’s Little Girl” and ask, “How can they dance if they can’t hear the music?”

When I was a koda (kid of Deaf Adults), I would inwardly roll my eyes. Dumb question. As an adult, though, I realized the question wasn’t dumb, but the asker was ignorant about being Deaf. Here was an opportunity to provide useful information.

Some Deaf people, like my mother, can’t hear a thing. They “hear” music with vibrations, either using their hands on a stereo or musical instrument, or through their feet when a loud band is playing.  Deaf people have rhythm too and can pick up the beat through the vibrations and dance. My mom was never a fan of music if she had to “hear” it through hand touch on a stereo player. She did love to dance with my dad when a band was playing.

My dad had some residual hearing. He wasn’t profoundly Deaf; his was a severe loss. He could detect a call for him if the name “Pete” or “Peter” was sung out loudly. He could hear a few words over the phone: yes, no, and OK. A conversation might go like this:

Dad: Did you get home safely?

Me: Yes

Dad: Good. How is the cat?

Me: OK

Dad: Ok, bye

Me: OK

Dad could hear music when the sound was turned up. As a teenager, I was the only one listening to 60s-70s rock whose parent would encourage “Turn it up, turn it up!” I remember that Dad especially enjoyed the Scott McKenzie song, “San Francisco”.  He asked if I could write the words for him, and I wrote the lyrics out as best as I could understand them. I knew the song was about hippies, Haight-Asbury, a concert there and wondered what he’d think of that, but he never commented on it.

We had a radio in the living room, and he’d turn on the station I listened to and wait for the song. Many times, I would walk by because I heard the song playing, and I would see him sitting on a chair with his hand cupping one ear and the other hand holding the paper so he could read the lyrics.  I bought a 45 of the song because I knew it wouldn’t play on the radio forever and gave it to him so he could play it whenever he wanted.

I remember one Christmas, my brother wanted a drum set.  He wanted to learn to play the drum solo from the song “Wipe Out”.  He nearly tumbled down the stairs Christmas morning after spotting the drum set. He was pretty sure he wouldn’t get one. He got right on it and began this slow practice, tap tap with one hand and then tap tap with the other.

“That doesn’t sound like ‘Wipeout’,” I teased him.

“You have to learn how to do it first,” he explained.

The following day, I heard the drums going and they sounded awesome considering how slow my brother had been the day before. So, I came downstairs to complement him and nearly rolled down myself. My father was sitting there, playing the drums. I was totally amazed.

“You play drums?”

My father laughed at the expression on my face. “Yes, I play in high school,” he told me. He added he played in the band! Not the drums, though, he played the French horn.

And I found myself asking the dumb question. “But how?”

“I can hear little,” he explained. He added the band teacher acted as a sort of metronome for the band members, showing the beat and when the sound was supposed to be louder or faster.  Most of the band members had some residual hearing so they were able to enjoy making music. How cool, I thought. Dad also went on to explain how it was that Deaf people enjoyed dancing.

As he aged, Dad lost most of his residual hearing. He couldn’t hear us on the phone anymore but, by then, we all had TDDs (telecommunication devices for the Deaf) and could have nice long conversations with each other. He never lost his appreciation for music and had a few noise complaint visits from the police because he’d turned the music up so loud.

I think he’s got normal hearing in Heaven. Either that, or there’s a vast Deaf community of angels up there playing electrified loud harps.

I Am Not In Step With My Companions

I have been an advocate for almost all my life.  I don’t like it when anyone is put down for any reason.  I hate racism and bigotry.  I feel compelled to stick up for kids, people with disabilities, and people who are disparaged because they are “other” for whatever reason: religion, skin color, sexual preference.  The reality is that I’m really different.  I am other too.

I remember that when I was little and lived on Long Island, I didn’t feel different except that my parents couldn’t hear.  I used to have the magical thinking that everyone’s parents were like mine, speaking with their voices outside but signing inside.  When I was about 6 or 7, I was rudely clued into the fact we were different when neighborhood kids chanted outside my bedroom window “Cassie’s mother is deaf and dumb!” I was furious and hurt but also was surrounded by a large loving family. 

My Grandma was my first hero.  She loved me unconditionally and was a comfort to me.  I felt mostly protected, accepted and loved but began to carry that little bit of “I’m really different” with me.

Once we moved to Maryland, I lost connection with family and friends.  The biggest loss was a daily connection to my precious Grandma.  In Baltimore, the neighborhood kids grudgingly allowed my brother and me into their circle but never let us forget how different we were.  Our parents were constantly accused of being spies because their outdoor voices weren’t intelligible…not like other hearing parents’ voices.

My parents discovered a Deaf social club and that is when the drinking began.  My brother and I had experienced DV from our mother all along.  She had an undiagnosed mental health problem with mood swings and rages.  With the drinking and battling that went on with my parents, home became a place where my brother and I walked on egg shells.

Now I felt so apart from others, I began to withdraw.  I did not form any close friendships because I didn’t want to bring a pal home to an unstable situation.  I also found it hard to put trust in people.  That is still an issue with me to this day and probably the major reason I’m so different.  I have friends but keep them at a distance.  I don’t confide secrets the way I’ve seen in films about friendships.  I keep things light, safe, and even further at a distance: my friends are all online, living in other states.

When I was about 11 or 12, I discovered the gothic soap opera “Dark Shadows.” I was one of the kids who’d run home after school to make sure I was there in time to watch the show.  I became hooked on it because of Barnabas Collins, the self-tortured vampire.  The first reason I connected with Barnabas was because of the dreadful secret he was hiding from everyone.  Later on, he was cured and became my hero because of how much he cared for and helped other people.  I began to see him as an imaginary big brother. Barnabas became my second hero.

The third hero was my 11^th grade English teacher, who saw something in me and reached out. Privately, she confided that her father was a Korean War veteran who’d come back changed and had become an alcoholic.  Her home life was chaotic.  Then she asked about me and my home life.  I wanted to tell her.  I wanted to so badly but that “don’t tell” rule was too strong.  I went red in the face and felt the beginnings of a panic attack as I stuttered that I was fine and my family was fine.  I saw understanding in her eyes and then she said she would always be there whenever I wanted to talk.

I never opened up to her but she was my hero because she reached out to me, a kid in need.  She cared.  That meant so much to me.

Over the years, I’ve had a lot of therapy and attended a lot of twelve step meetings.  I learned so much about myself and my issues.  I learned that some of my coping mechanisms were dysfunctional and how to change them.  The meetings online and in person are a source of comfort to me because I feel as if I’m with people who “get” me and I “get” them. If I was to bond with anyone in deep friendship, it would be someone from one of those meetings. However, we all keep things anonymous and even with people who “get” me, I’m anxious about totally opening up.

I’ve let down my protective wall a lot but I still keep people at a distance, even the friends of over 30 years.  I have come to the conclusion that it’s so ingrained and emblazoned in me it’s just become a part of me.  I like who I am now but that is my one regret.

This is my favorite poem: 

If a man does not keep pace with his companions,

Perhaps it is because he hears a different drummer.

Let him step to the music which he hears,

However measured or far away.

Stephen Crane