Tag Archives: family

Remembering Sound

Saturday afternoon I had the chance to relax by putting up my feet, having a cup of Honey Lemon Ginseng Green tea, and finishing a book titled, Hands of My Father: A Hearing Boy, His Deaf Parents, and the Language of Love by Myron Uhlberg. Embarrassing to admit, but this book has been sitting on my shelf collecting dust for a while. However, this book was a great find! On a trip to the town library, I just so happened to walk-in on a day that they were having a book sale! I am most serious when I say this–some of my greatest reads come from library or campus bookstore book sales! 🙂 On that particular day, it just so happened too that I found $2 in my wallet (it’s rare for me to have petty cash.) The books were 50 cents each unless otherwise marked.

I am glad that I got to browsing the tables when I did. I picked up a Penguin Classic of Jane Austen’s novel, Mansfield Park, and found Henry David Thoreau’s, A Week on the Concord and Merrimack Rivers. I didn’t think much of Thoreau’s book, so I set it down and continued browsing through the autobiographies, in which I found the book, Hands of My Father. I can take a long time shopping, whether for books or groceries or clothes. I think, contemplate; I read the inlet book descriptions, compare prices or flavors of coffee creamers, and fashionably brainstorm new outfits. I even noted that while buying acrylic paint last week that I took more than what is probably considered a standard paint shopping time frame.

In books, I cannot impulse buy; so as I continue to read the back covers, I see a lady come in on the other side of the room and start a mass wave of book consumption, reserving the load of stacked titles in a small empty spot on a table next to the door. I just stood there for a moment to realize that if I didn’t make impulse decisions of two more books–completing my $2 worth–then there would be nothing left to make a decision on! Impulsively, I grab Thoreau’s book (still uncertain it is what I want, but since it was not marked in and unabridged, I figured if anything it could make a nice present…no library codes attached on the cover either!) Skimming the rest of the titles on the far side of the room, I find a sign language textbook and secured it with my other three titles. Just in time. The lady’s swiftness of book snatching had already found the table next to me.

Regardless, I left the library with four new books and the few that I had first come to the library to check out anyway. Jane Austen and Thoreau’s novels, I actually put to good use as it was the time when I first started experimenting with mixed media on my paintings. A friend borrowed the sign language dictionary, so her family can learn basic signs to communicate with me when lip-reading fails. They caught on finger spelling fast! The Hands of My Father, though the sincerest efforts to read the memoir were made often, got set on the shelf until a few weeks ago.

As I started Uhlberg’s memoir, I found the format unique. Instead of the typical “childhood to adulthood” format–in which most others are written, Uhlberg used his chapters almost like that of blog posts. Separate memories, unrelated to each other, yet having a flow…I found myself fascinated by the vast differences we are to each other, besides one common denominator: deafness in a family. Uhlberg’s childhood started during the Depression, then WWII and in the 1950’s. An 80’s baby, I lived THE 1990’s and saw a new millennium. He grew up in Brooklyn and got box seats with his father to see Jackie Robinson play for the Dodgers; I grew up in a small farm town in Colorado and went with my family to the “car races” that were held in a potato field with hay bails as the race track boundary lines. You get the picture…

The main difference (obviously) is that Uhlberg had Deaf parents. In his childhood, deafness was considered dumbness–you were deaf? You were considered dumb, unruly, unable to be and live normal like the hearing world; you were ignored or stared at when speaking in signs. Sign language was not even considered a language–there was no such thing as an interpreter. Deaf kids were not allowed to play the games or sports at school, because they had to make up for what hearing teachers considered “never being able to understand and learn” like the other kids. How could they when, even in the schools for the Deaf, sign language was prohibited?

In Uhlberg’s stories, he not only incorporated his own feelings and burdens of this living, but also what he learned from his parents experiences of joys, pains, communication voids and what it means to take pride in yourself without regard for those who think ill of your differences. His father was a great example of the latter in the list, although personally for Uhlberg, the transitions of going from being his father’s kid to having to be the adult in situations where interpreting was needed put a heavy burden on his shoulders. In my own instances, I am not in Uhlberg’s shoes, but like his father. I depend on my family for when I am in communication voids.

In the reading, it was his father’s questions that made me ponder. Born hearing, yet losing it at a small age, his father knew a few sounds. After full deafness before the age of four, he now wanted to remember those sounds. So he asked questions such as, What do waves sound like? And Uhlberg would try to explain, in adjectives, the sound of waves. I finished the book and thought of sounds that I hadn’t heard since high school: frogs croaking, birds chirping or crickets singing, the pitch of my flute, Muffy purring, a person speaking to me while standing behind me, soundtracks on a movie. Sounds just started to disappear and now when I “remember” them…it is just a memory, not a sound. Unlike Uhlberg’s father, deafness came slowly for me; I am thankful for this, even though complete silence is difficult; it’s lonely.

So I wait with anticipation. Deafness will fade away, like waves on the shore when the Sound of Jesus return is proclaimed for all eternity.

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Filed under Adjusting to NF2, Books and Movies, Family Times, Uncategorized

Solid Grip

Normally when I accidently drop a medicine on the floor, one of my family will hear it land and come quickly to the rescue. No one saw or heard me drop a pill tonight, and instead of asking for help, I tried to pick it up myself.

I don’t say coincidence, but my dropping of pills is always the same two and they never seem to end in causing me troubles: the first is skinny, yet cylinder shaped, and has the smooth outer wax-looking covering making it slippery for my numb fingers; and the second pill, well, it just so happens to be the exact same color as the wooden floor and when it drops–it’s transparent. It’s a daunting task to find this pill, and when I do, it is usually if I tip my head at very awkward angles or the lights suddenly reflect a shiny stud on the floor. I take both these pills twice a day…some days, like today, are just aggravating!

When I dropped the former of the pills this morning, I was alone. I tried with no success to pick it up with my fingers, but after a few minutes, resulted in grabbing a spoon from the drawer and pushing the pill into the middle of the utensil. Pulling myself back into standing position, balancing the pill on the spoon had me feeling as if it was a raw egg. 🙂 The spoon-retrieving-medicine was a success, so when the pill dropped again tonight, I started the same process, except this time first asking Marcia for a spoon. It was then Dad realized what I was doing and came to the rescue.

It must not have been my day for medicine, because shortly after this I set out to refill my day caps for the coming week. When I got to the latter of my two trouble-making pills, I didn’t drop just one…but two, as they slid out of my hands. I did the usual awkward angle head positions and found one, but as I gently swept it closer to me in order to pick it up without falling off my chair, it speeds away and goes back into transparency. It’s then that I let out a disgusted, frustrated: “UGH. Good grief!!” Mom came to the rescue and found both.

I had one more refill, but in this case, the pill is never the problem–the bottle cap is the problem. It is one of those “squeeze the cap on the sides while you turn the bottle,” and I normally don’t bother to try anymore with opening it. I can’t remember the last time I opened a bottle like this normal…it has to be a few years; the atrophy in my thumb muscles played a role in this long before numbness was a problem. My hand format consists of placing the bottle in my left hand–one of the “push here” spots rests against the bone of the thumb that stands out since the atrophy; and the other “push here” spot, I place my pointer/index finger and squeeze as hard as I can, while twisting the bottle with my right hand. It never started to become a major problem until the numbness increased.

Maybe it was my frustration of medicines today, but as I tried to open it, instead of giving up right away, I set out to try something else. I unsuccessfully tried using a pair of needle-nose pliers, but in this attempt I noted that most of my problem was not the “push and twist” of the cap, but my holding the bottle firm in the right hand. So, I found the non-slip rubber jar opener pad in another drawer and just tried again to see if I could open the medicine bottle.

It was not easy, even with the assistance…but after a few more big squeezes and strains, the bottle opened. And I cried. In that moment I felt victorious. I should see the same in life…that even the most difficult days are worth living, because I am held firm in God’s hand.

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Filed under Adjusting to NF2, Family Times

My One Word for 2014

From my last post, one can read about the good times my family and I had while being all together for the first time in over a year. It was a phenomenal way to kick off the new year and I wish it could have lasted longer!

Over the week, however, I really struggled with the battles waging in my mind. I know–you will tell me something like, “Mel, you are beautiful. Don’t believe the lies that say otherwise,”–but right at the start, looking around at my beautiful family talking and laughing over our Spaghetti Warehouse dinner..I just wanted to burst into tears. I felt different, distant than everyone else. It was only the beginning of my “happy face” week.

I think in part it is frustration at my current hand condition. As the numbness increases, so does the weakness and curling of my fingers. Tasks that should be fast, are now taking me longer or requiring help. One that is most frustrating of all is putting in my hearing aid. Some days I just can’t, so I either go without it (which I do okay in lip-reading) or someone else puts it in for me. It was putting in my hearing aid before our late lunch on Sunday that caused me to get so frustrated that once I finally got it placed in my ear, I looked in the mirror and told myself, “Just put on your happy face.”

I know–I can be honest with my family and should not hide emotions, but I get tired of it being about my health. I feel my conversations with people are most often about my health (if they ask about it) or books, coffee, or small talk such as this. My first engaging conversation I have had in a long time was when we came home from the Creation Museum the Friday before and we started discussing Darwin, natural selection, and evolution. Don’t get me wrong, the car ride to the museum had us in conversation of memories–hilarious–but memories are different than deep questions (if you get what I mean.) Back to Sunday, the battling of emotions and lies in my head did not fool my sister, Marcia, as I came back into the kitchen.

She asked what I what I wanted to drink and I snapped, “Water,” then headed to Mom’s bathroom to see if she had a hair clip. Not being able to do my hair anymore was also bugging me. Next thing I know, I am a sobbing mess and Marcia finds me like this–anything but happy. Ironic, just releasing those anger and frustration thoughts helped me release the tight emotions. Marcia said that we are family–I don’t have to put on a happy face for them. Easier said than done when you battle “burden” thoughts for over ten years. Mom found us and helped me put up my hair. The evening turned out to be one of great memories and laughs. With a true happy face.

Not even a day later, I find myself in the worst possible situation I have ever had physically. It’s not G-rated and I don’t wish to discuss it…but let’s just say that night I was sick, and I mean literally sick. It was awful. I have never felt so humiliated even though I was at home just with family. Without asking questions, Marcia and Mom set out to assist me, as once again, I am a sobbing mess. I even said, “This is when I hate my body.” And I meant it. While helping me, and cleaning up at the same time, I am not sure how the conversation flow happened, but I remember Marcia looking up and saying, “Because you’re family and we love you.”

Holley Gerth–author, speaker, fellow blogger–wrote a post, “What’s your one word for 2014?” It was sent to my inbox the morning of the humiliating incident evening. I read it, but I did not start to think serious about something like this until a few days later. I have never claimed a life verse or a yearly word. I know others who have, but especially a yearly word–seemed like a resolution to me and I never meet my resolutions, thus, I don’t make them at the beginning of the year. I just used that as my excuse, I suppose. Maybe it was something about Marcia’s comment that caused me to see different.

My health is something that affects much greater than myself. For my family, I can’t grasp the depth of their sacrifices on my part due to health or what it means for all of us in the future. But what I saw the night of my most vulnerable physical state was Love. It was sacrifice. It was pure. We say the word “love” all the time, about anything, but are we really giving ourselves away in the process? In thinking of Holley’s question, I found myself trying to find the “perfect” word for my year of 2014. It didn’t take me long to oust the perfection part and just gather a word. I thought of many but found myself returning to this: there is only one perfect Love and through my sister and Mom’s actions, I saw Jesus.

That is Love.

What is my one word for 2014?

Love.

Little children, let us not love in word or talk but in deed and in truth.

~I John 3:18

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I’m home!

Yep! Got discharged about 9:45pm and we left shortly after that. Sleep finally found me on our drive home, but still exhausted. We all are. Got home not too long ago and I am ready to jump (not literally) into bed. My own bed. 🙂 I am feeling much better compared to how I entered the hospital/the last two weeks, but it will still take recovery time and getting used to the new stomach/digestive medicines and the steroids. Doctors are now aware of the problems I have been having and will keep in contact with me about how I am doing. My main doctor was out-of-town so he has yet to be notified about all this too.

Thank you for your prayers. The doctors there are so kind and want to help me feel the best and maintain the best I can as long as I can and I am thankful for that too; it is a huge blessing to me and my family.

And I just cannot thank God enough for my family. For all their love and care, texts of encouragement, and by replacing a short trip to see grandparents and cousins to hang out with me in the hospital. And those extended family members who understand the sacrifice they had to make to help me feel better as it was in part a sacrifice for you too, thank you for your love and prayers.

It is in moments like these that I do not understand why my problem had to come at a time like this, but trusting good has come out of it. Because God is good. And that is what I am going to think about as I fall asleep. I am going to trade my guilty weight of “bringing down the family and ruining the weekend” with thoughts of God’s goodness and grace.

Goodnight everyone.

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Filed under Adjusting to NF2, Family Times, Hospital Trips

Christmas all year long.

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Yesterday’s Christmas Eve service was the same as Sunday. Off I went Sunday with my family to their church so I braced myself for a service without interpreters, which I knew. The pastor usually leaves his sermon notes copied off on the table in the foyer, but there were none left when we arrived. I just watched the praise team from the balcony where we sat and read the words to the songs, occasionally hearing the beat of the next stanza so I could try to sing along. The sermon started and I just followed the three main bullet points of the sermon about the particular Advent candle. I had my Bible so I read some passages and found amusement from the boy sitting in front of me trying to figure out where the exact middle of the Bible was–he ended up in the middle of the Psalms. No surprise, I told myself…seems like I had done that myself when I was his age. We took communion and then the praise band did an acoustic version of “O Little Town of Bethlehem.” They sang all the verses–and even though I could hear all the words, I just sat there and listened for most of it. Just letting the words sink in. “O come to us, abide with us, our Lord Emmanuel.”

Last night was different though the same church, same pastor, same seats. Except this time my attitude was different. In the car, I kept thinking to myself–this is ridiculous! I could just stay at home and read my Bible and sing a few hymns to myself. I felt more like a hypocrite really–wearing my favorite skinny jeans, cute sparkly top and sparkly shoes. Like dressing up for nothing…was what my thoughts were. The songs had no words on the power point; there were no bullet points to the message; and worst of all, I forgot my Bible so I couldn’t even read any passages. I just sat there. My right hearing aid was not right and so I had to take it out; my shoes were bugging me (and my sister told me they were making noise as I was trying to take them off); and I just really wanted to leave. We did not even have candles to hold when they started the song and proceeded with the congregation lighting each others’ candles. The people in front of us turned and realized we had no candles. They offered theirs. Another woman did the same. When all the candles were lit, we sang Silent Night.

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In the candle glow, I realized that this is what Christmas should be like–sharing our candles with others so they too have light in their time of need. It brings hope and love and peace. The Light of Christmas isn’t meant to burn out the 26th of December. The message lasts all year.

From my house to yours: Merry Christmas!

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Filed under Adjusting to NF2, Family Times, Muffy, Random