Category Archives: Books and Movies

Chill Winds

It seems to have changed overnight. We went from mid-70’s, shorts and tee-shirt attire to pants, sweaters, and scarves all in one weekend. Suddenly, Mom is pulling the remainder of her tomatoes from the garden before frost sets and soup is now a comfort food…it fits the atmosphere, the season, like a cup of tea in the evening…there are good things in every season. I just have to see them with a better attitude.

I haven’t seen it here–which has surprised me: birds migrating. I saw flocks of birds migrating south to warmer weather in Colorado. As the weather suddenly changed here, I thought of the migrations…the flight–almost escape–from the present condition to warmer, winter luxury days. I almost envied it, because I have no escape from my present condition, no luxury of easy days ahead.

And the thought came to mind: “So this is it. This is what it is.” I knew the right eye surgery would not fix everything, but maybe I was hoping for more. It seems that my entire body took a sudden change, like the weather–it just did with no warning and now it is different. I was trying to retrieve a small container of trail mix from the pantry the other evening and was having problems gripping the container while balancing, practically dropping it all to the floor. It is a common sight. But as I turned to grab my walker handles, Mom was behind me. Already having a frustrating day, I mumbled, “If this is what it is going to be like for the rest of my life, it stinks.”

The next day I was typing a letter to my cousin who, at age fourteen, said a few ideas about what she wanted to be when she grew up, but wasn’t sure. I sat contemplating thoughts, because I am still at that stage in my own life…not necessarily what I want to be (I have plenty of those old dreams), but what God needs me to be. What am I supposed to be doing with my life, because the world around me is moving and people’s lives seem migrating from one thing to the next and I feel I often just sit missing something.

After much thought and looking at my own heart, I responded:

You said you don’t know what you want to be when you grow up and that is okay. I am 12 years older than you and find myself out of the “world of work” not knowing what I am supposed to be doing and often get frustrated or antsy that I have what I see as limitations. It is not easy, but I am learning to see that there is so much work we can do every day for God if I let go of what I had always dreamed for myself of a future.

It is one of the fine lines of faith I walk daily. And usually the frustrations win. As I re-started Francis Chan’s book, Crazy Love, this morning, I was reminded of the importance of standing in awe, complete awe, of God. I don’t often do that, if at all…too many distractions, too many wishful migrating thoughts. It is terribly difficult to even look or think of my body with an awe of seeing it as God’s creation, perfectly woven from before birth. The physical I now live is not what I may want, but in every season, there is good. I just need to live it in a better attitude, full of awe of God’s Goodness.

And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.

Colossians 3:17









Filed under Adjusting to NF2, Books and Movies, Uncategorized

Rugby Church

Rugby is a strange and fascinating sport. It actually reminds me a bit of the way Calvin and Hobbes play Calvinball in Bill Watterson’s comic strip–the set up structures and plays always shifting to what seems like a new sport. Saturday night, I found myself relaxing and since I had finished a book the night before, I wanted a change of atmosphere and decided to browse Netflix on my Nook instead. As I scanned some of the movies already pre-selected from earlier this summer, I found a few that seemed funny but ended switching three times until I found a movie that seemed a solid, not just a movie, sort of story. The movie: Forever Strong.

Forever Strong is a story based off true events. The main character, Rick Penning, is a 17-year old Rugby star on his father’s rugby team. Living a party and wild life off the field, Rick gets his second DUI and is sent to a juvenile detention center where his relationship with his father is scattered and Rick is anything but skeptical about life change. At first. A counselor at the detention center was the first to notice Rick teaching a group of other detention boys the fundamentals of the sport,

Rick: Now, if you get tackled and you go down, you must release the ball back to one of your own guys. Then he takes it and goes. We don’t stop. There’s no huddles, no time-outs.

Detention boy: So, it’s kinda like football and soccer?

Rick: It’s kinda like Rugby.

As time continues towards Rick’s 18th  birthday, if he does not turn his life around, he could end in a state prison. But a rival rugby team’s head coach, Coach Larry Gelwix, sees potential for the better in Rick and offers him a chance and playing position on his team. It is not the field and wins that essentially matter to Coach Gelwix, but first, the player as a person off the field…the lives of his young men and who they become are what he puts as top priority. For Rick, this is a new philosophy. Over the course of his detention time, he learns life change…a better change. Tears, sweat, laughter, sacrifice, pain, hope…Rick’s once rival team, became more than just a rugby team on the field. They became brothers, bonded by a desire to be better in life, to get back on their feet even when they didn’t think it was possible.

As I watched the field action, the ruthlessness of the sport made me think of one thing: where on earth are the helmets and shoulder pads and protective gear? All they had was a mouth piece that looked much like a night retainer you wear when sleeping. Soccer can get crazy, but they don’t simultaneously tackle like football players either. I now have a greater respect for rugby, even if I don’t fully understand the rules and plays of the game.

Like Rick explained in his rugby fundamentals, life rarely gives time-outs. If any at all. It can be ruthless, being knocked down again and again. As I somewhat marveled at the players determination against the rivals and the pain, I thought of my own protective gear. In Ephesians 6:10-19, Paul urges the brothers and sisters in faith to put on the full armor of God, “ For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places,” (v. 12). My own armor of God is always there, but lately, I have been living days where I don’t take time or effort to fully put it on, guarding myself…leaving myself prone to the “flaming darts of the evil one,” (v.16). 

I have been given the strength to stand, again and again. And I will continue to be knocked down, again and again. Who would have known that a simple sport movie would remind me of what is important, what comes first as top priority in life…who I am in Jesus Christ. I still and will have my days, like the frustrations of the hands that I recently posted, but it is part of the getting up, continuing on, living life to the full.

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I suppose that I have been scientifically incorrect all day, as I have been saying “Happy First Day of Fall,” first to Marcia as she helped me get breakfast and then in written email form to my friends. I guess I should have double checked the calendar on the wall, because according to my Google search, I am a few days ahead of schedule. Not in my mind to be a big deal, as I am readily excited for the season change, however, according to the National Weather Service  website, the official time the Autumnal Equinox begins is Tuesday, September 22nd at 10:29 EST. (

I don’t believe that my physical change are purposefully targeted to happen around the weather. Yet, if that is truly what God intends–maybe to teach me a new lesson of faith–then it sure seems to happen in this way more often. These past few weeks have brought many changes, not just for myself, but my family too. It is situations I cannot do on my own; it is situations my family cannot do on their own.

Because I have to sit almost all day at the present times, I get to think, read and do a lot of looking out the window when no one is around. I first got home from eye surgery, I was in complete sleep zone, but now that I am awake and more alert, I have noticed the leaves changing colors. Starting small at first, now they are clumping together to more brighter show. I have been thinking of this in terms of how much love, prayers and support are shown to me and my family during these times. The love of God starts spreading, like new colors on the leaves making a beautiful picture to behold.

The oxymoron: change is constant. Seasons are short. Even as Autumn begins, it will end. In an Andy Griffith episode titled, “The Loaded Goat,” the town of Mayberry finds themselves in a bit of change for a day as well. As construction workers blast near the highway for an underpass, a local farmer brings his goat, Jimmy, to town. Understand, Jimmy “has a very healthy appetite.” After chewing his rope and freeing himself from the bench, Jimmy wanders around town and gets himself into predicaments with the town drunk, Otis, and eats some of the dynamite found stored in a shed for the bypass work.

Hilarious adventures follow, as Barney and Andy determine the best way to resolve getting the goat safely out of town. Andy sends for the construction crew’s blast engineer for advice. Never having seen anything such as this in his prior twenty years on the job, his knowledge of the situation was simple: “There is only one thing you can be sure of, and that there is nothing you can be sure of.”

I am sure Moses felt this way too, as God spoke to him through the burning bush. Moses, being called to enter a new season of change, wanted to know what to tell the people when they asked for His name,

Then Moses said to God, “If I come to the people of Israel and say to them, ‘The God of your fathers has sent me to you,’ and they ask me, ‘What is his name?’ what shall I say to them?”

God said to Moses, “I AM who I AM.” And he said, “Say this to the people of Israel, ‘I AM has sent me to you.’”

Exodus 3:13-14

Changeless. And as I often sit gazing out the same window, the truth that God remains, never changing, shows me how small and fragile my faith can become when I trust myself in an ever-changing world. Even while sitting, I can fully stand on the promises of God.


Filed under Books and Movies, Family Times, Uncategorized

Secret Codes

When we were little, my sisters and I played “Spy.” If you have never been associated with this game, allow me to explain. It all begins with a sheet of wide-ruled paper and a wooden No. 2 pencil that was usually used for math class, hence, it lacks the eraser. After spending half of your spy time by creating a detailed floor plan of the downstairs areas, especially the kitchen, the game has now begun.

It’s a parallel to hide-and-seek with follow-the-leader. The objective is to pinpoint the non-playing family members and spy on them without being seen or heard. Melissa, being the eldest and cunning, always seemed to end the spying eye on her at first notice; Mom just played along, even when we giggled or accidentally moved the table chairs while trying to knee past them on the tile floor. It was the era of Carmen Sandiego and our games of Spy just happened to help us solve our curiosity mysteries.

Fast forward to junior high days–it was in these days that I learned two fundamental traits that would guide me as I started losing my hearing in the end of eighth grade: sign language and lip-reading. I first learned sign language from Melissa my sixth grade year, as she had learned a song at summer camp. That next summer meant that I was old enough to attend church camp as well, but I did not take the signing class–my friends did, however, and that year I learned, “I Can Only Imagine.” My junior year of high school, I took a community ASL class with my Dad; I had been self-teaching myself from a few signing books I purchased at the local college, but the course helped increase my vocabulary.

Until my lip-reading rehabilitation course during my first rounds of radiation in 2002, I never realized how much I was already reading. I sometimes get asked when I first started, and I honestly don’t know. I do remember once getting a talk from Mom after getting into trouble, in which I read her lips…but I always thought that may have resulted from a guilty conscience rather than hearing loss. 🙂

We may have no longer played our games of Spy, but we sisters developed in the junior high years a code. A secret code, and we would relay this message to each other in our times of need: SPR!! Yes, these three letters were part of the foundation to my lip-reading career. Best part was that we could say them to each other from across the dining room table or Sunday School room. The message was simple, so loud and clear: Secret Private Room. It usually was the closet, but some of our best secrets and cases solved were a result of the SPR!

Fast forward to the present day: I no longer play Spy or hold SPR meetings in my closet, but I do enjoy the game of CLUE. My college roommate and friend from Denver days surprised me with a visit on the weekend of the art show! Considering my past history in solving mysteries, one would think I would have not been so confused at the situation, when Callista taps my shoulder and I look up to see her smiley face. I was at the kitchen table reading, so I had my glasses off; Mom had just been discussing the new neighbors, resulting in my next sentence understanding of who I portray Callista to be in my mind: “You look like my roommate from college.” The lip-reading, because in my mind I know it is Calista, but I think it’s the new neighbor–it just threw me off completely.

“Hold on a sec and let me get my glasses on,” thinking of how I don’t like new introductions as I am terrible at names. I turn back around, see Kate and glance back at Callista. “What are you doing here?” It finally settles in–yes, these are my friends and they came to see me. 🙂 Later that night, we played CLUE. My hand of cards was not the greatest. I had all characters and two rooms, no weapon options. We play a few rounds and I had two characters left–still no weapons marked and only one room (besides my own) marked off the choices. Deciding to subject my own character to checks and balances, I place him in the nearest room and random grab a choice weapon.

“I think it is Mr. Plumb, in the kitchen with a candlestick.” Kate had no cards, Callista had no cards; they look at me like I am pure genius. “It was just a guess,” I had to assure them. Back came the conversations of Carmen Sandiego and I mentioned the show Sue Thomas, F.B.I.–inspired by the true story of Sue Thomas, who solved crimes by lip-reading: a deaf F.B.I. agent.

I must have been inspired by all these memories when it came to Monday’s MRI. Being an older, complicated body patient, my scans usually get scheduled for the last of the day. Monday was no exception. I was to report by 5pm for the preparations (which is translated as paperwork and questions); the scans starting at 5:30. I am comfortable with the long scans–usually they are my nap time when scheduled for earlier in the day. With this scan scheduled late, I knew if I napped, I would not sleep when I got home. Selecting my movie, I toyed with the Lord of the Rings, but once I start one–I must watch them ALL. To escape this, I selected Star Wars V: The Empire Strikes Back.

They get me settled in with the head-gear, strap my arms in, blanket and knee lifter; I am all ready for the scan and movie, although the goggles pressed hard into my nose. The opening overture and text starts–I find that looking at the screen with my left eye is actually blurred. So I allow that eye a break, close it, and view the movie from my right…aside from color differences, I saw things pretty normal considering its condition.

We’re still the beginning parts of the movie: Rebel forces are fighting the Empire on the ice planet Hoth and aside from that action, there are a few scenes with Darth Vader and his top commanders on his spaceship. It was right at the moment when the light, snowy planet Hoth gets cut off to the scene of the darkness of the spaceship that I am thinking I am seeing a secret code! You’ve heard of it before–movies will flash messages to the audience: “Buy popcorn.” Or something to that extent.

As the camera zooms in on the outer of the spaceship, I am seeing words, in what I think is the little lights from the inner of the spaceship. All excited, I start squinting to decipher the code, thinking, “Wow. My right eye problems give me a chance to see things different!” I start to see it is in sentences:

“This movie is 2 and a half hours long….” It goes on to tell me that it is not good for my eyes and that I should shut it off and sleep. But just in case I still wanted to view the movie,”Press [*].” So much for codes-Luke hadn’t even gone to Dagobah to find Yoda yet and it wants me to sleep! Thinking that my eye had recently gained some sort of cool lens power made me laugh.

In life, there are secrets and mysteries. Some will be revealed, some will not. Instead of solving them, I am learning to live in them.

Call to me and I will answer you, and will tell you great and hidden things that you have not known.

Jeremiah 33:3


Filed under Adjusting to NF2, Books and Movies, Family Times, Funny Stories, Hospital Trips, Uncategorized

For the Caregivers

I am currently reading the book, Joni & Ken: An Untold Love Story. Prior to its release last year, I think it is a safe assumption to say that when in conversation, if the name, Joni Eareckson Tada, should happen to be mentioned, most anyone could say a few common knowledgeable facts about her life: quadriplegic due to a diving accident as a teen; writes books and draws amazing sketches or paints with her mouth; founded Joni and Friends, in which works with the disabled community throughout the world. Through Joni and Friends, many more around the globe are touched through outreach ministries of the organization, such as Wheels for the World and Joni’s 5-minute radio broadcast aired daily.

I realize that this could just be me. However, I might add another bold assumption that while Joni’s name and story is universally known, her husband’s story is not. In fact, I couldn’t have even told you his first name or what he looked like (not that it matters) or anything about his walk with God and with being married to Joni. So as much as I have enjoyed being deeply encouraged again by Joni’s testimony, I am even more so inclined to Ken’s story.

And I think I know why: because in my life–I am “Joni.” In this book, though I have never been quadriplegic nor have I had breast cancer, I relate to Joni. She speaks of emotions and questions and a longing for Heaven that I understand; It comes with the physical suffering. Still God has given her daily strength, grace, good humor and an abundance of helping hands–Joni responds with praises in all circumstances. In reading the testimonial of the Tada’s marriage and faith in all things, I am seeing God’s hand working in Ken’s life. And in a way, I am seeing my family there too–the caregiver.

There are no words, really, to describe my family. The past twelve years since diagnosis has most likely been just as crazy of a whirlwind roller-coaster ride for them as it has been for me. For me, it has taken years to finally release the guilt, comes with the likeness of a heavy disease, that I am not a burden…not necessarily “me,” but the extraness, expense, inconvenience of it all. It effects everyone. (I sometimes wonder if Joni has ever experienced this same guilt feeling?)

Over the past few months of physical changes, I realized the once-removed guilt thoughts had returned. I am in process of starting to depend on care from others more than I ever had before. It has been humbling and frustrating and definitely an area in my life in which God is working with my stubbornness in just simply letting go and asking for help when needed. What has come to mind in this reading, thinking of caregivers is that it probably can be just as frustrating watching someone fight so hard against simply asking for help. I just smiled to think of the moments when I am trying to open something in the kitchen and after many (many) minutes, Mom will approach and I turn feeling half-defeated (pride)/half in gratitude for her presence as I hand her what I cannot open. “Determination,” I told her once. She said she knew…didn’t have to say anything else. 🙂

I’ve never thought of my family in terms as “caregiver.” I had always reserved that title for association with elderly and nursing homes. But my family is my caregivers: they care and they give. So as I finished a chapter in the book two nights ago, I was in thought by a story that happened to Ken. Joni, home recovering from her breast cancer surgery, was relaxing in the living room. Ken decides to use the time to get the patio ready for the upcoming July 4th holiday with friends. Going into the garage, he needed to move the car and as the radio came on, so did a Joni and Friends 5-minute program that he had never heard before. Joni said:

Life is hard for people in wheelchairs…but it’s just as hard when you’re the caregiver. So let me take a minute and pray. I want to pray, not only for you who are listening today who might have a physical disability, but [also] let me pray for the people who help…

Joni & Ken: An Untold Love Story. Ken and Joni Eareckson Tada with Larry Libby. (Zondervan, 2013. pg. 29)

It was then that Ken realized Joni prayed for him. And I sat there…such a simple yet profound gesture on my part in return for my family, my caregivers. Yes, I pray for them, but never talking to God about all that they have done for me…never asking on behalf of their bodies, for continued peace and strength as they continue to help my weakening one. And through this new way of prayer, I hope to see my guilt cease and praise to God in all thing increase.


Filed under Adjusting to NF2, Books and Movies, Uncategorized

Greater Expectations

If, by chance, my high school English teacher reads this particular blog entry, I feel inclined to start with a sincere note of appreciation to her outstanding tutelage in the area of classic literature. It was in her class that I first discovered (for as smart as I claimed fame to be), I was clueless when it came to Shakespeare; appalled at the darkness of Edgar Alan Poe’s works; wanted justice after reading George Orwell’s Animal Farm; and thought there was no greater written soap opera than that of F. Scott Fitzgerald’s The Great Gatsby. We encountered The Grapes of Wrath, sections of The Canterbury Tales, and most of all, works of the highly esteemed, Charles Dickens.

I like to give any read I pick up a decent try. There are the books that are enjoyable (say 3 of 5 stars); books that are worth discussing and sharing the title along to your friends (say 4 of 5 stars); and books that are all of the previous, plus the fact that you instantly want to reread the book, it is always in thought someway during the day and you take part of the action of plot while dreaming at night. Yes, a true 5 of 5 read can affect one in this manner (true story!) Sad to report, a devastating read can trigger the opposite of all joyous 5 of 5 characteristics single-handedly. For me, that took place my freshman year of high school. The novel: Great Expectations by Charles Dickens. Maybe it is because Dickens already happened to be a favorite author of mine at the time, that I expected to enjoy the novel as I had A Tale of Two Cities. (Of course, growing up, nothing was considered more classic and traditional in our house at Christmas than A Christmas Carol, especially if Jim Henson Muppets were involved. 🙂 ) Although my English teacher lectured and presented the novel with great enthusiasm, Great Expectations is placed on my “Abandoned: never-to-read-again” shelf in my mental library.

The more I think of expectations, the more funny it seems. We cling to expectations…they are the wins and losses. We run back and forth between the two–expectations must be balanced between the positive and the negative, much like a teeter-totter. When you have no expectations, you can find yourself thrust into a situation where you are inclined to making expectations on a whim. And for me, I did just that very thing yesterday after my cataract correction surgery on my left eye.

Eye surgery is strange; it is vastly different than other surgeries I have encountered. At one point in time, though highly on my anesthesia about ready to be wheeled in the surgery room, I remember thinking, “How am I going to blog about this?” 🙂 The preparation meant loads of different eye drops, getting my IV in place and vitals completed. Towards the last few minutes, the nurse squirted in the final eye drops and I was told to close my eyes. When she left the room, she shut off the lights. I fell asleep.

It was a great sleep…like the deep slumber you enjoy between smacking the snooze button vicariously on your alarm clock in the morning. I had no snooze button, but was quickly awakened when the nurses came back in the room and turned on the lights. Momentarily blinded by brightness, I read Mom’s “I love you” signed hand and they start wheeling me out in the hall. Now, I get confused easily, especially when it comes to reading lips dealing with medical things through eyes such as mine (that is my excuse…truth is I just miss a lot and find out about it later.) A few examples: I thought the surgery would take long (my expectation), but it really was only about twenty minutes. I also knew in my head that I was not going to be put to sleep, but got confused when they put the tubes up my nose (Mom told me later that it was oxygen.)

This all started to make better sense when she told me this, because on the drive home I started talking about the fact that I was “asleep” yet saw the light and things moving around my eye. The light was so bright that up until I left the hospital everything in that eye was orange. 🙂 We were given the instructions for the continuing eye drops at home and they covered my left glasses lens so my eye would not be strained for the day.

I had greater expectations for recovery in terms of time. I expected fast; indeed, the initial results are fast! Immediately after surgery, though temporarily orange, I could see clearly. No more cataract, no more haze! 🙂 But I also learned full recovery takes time. July has just begun. Among everything else in schedule, I have the entire month filled with eye drops three times a day and letting my eye adjust before I can go to a regular eye doctor for a new prescription of a glasses lens for the left eye. My expectations–frustrated!!!, but I can bring it back to balance–as always–by offering praise and thanksgiving, for the ability to see and the blessings from those around me who are the helping hands in my recovery.


Filed under Adjusting to NF2, Books and Movies, Hospital Trips, Uncategorized

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.


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

Homemade OT

“Do you want to go out on the patio to sit?” We had just finished dinner and Dad was up from the table already starting to clear the dishes to the sink. It was a particularly toasty day, so I had only ventured outdoors when Mom drove me to my short doctor appointment in town. But around supper, the temperatures dropped slightly making the air pleasantly calm and a soft warmth.

“I’m not sure what I am going to do,” I reply to Mom’s question. Before dinner I had finished a book–downloaded on my Nook–that a friend recommended to me. I was all caught upon emails, not planning on starting any paintings, had a clean room and just did laundry a few days prior, and didn’t feel like resuming finger-poke blog entries just yet. In a word, I was a bit bored. I could have called someone on my Captel phone for a conversation, but decided fresh air was needed.

I was taking the last of my medicines in the kitchen and thought of what to do while outside. Mom was going to be planting the yellow Columbines she recently bought from Lowes and Dad was working on (what looked like to me) weeding and installing the new garden hose. Never being one with a “green thumb” and now too adding my limitations of walking, bending over due to balance and my hands–I am pretty much no use in the garden. (Although I do play a role sometimes of watering the flowers and small bushes near the house with the hose.)

I decided I could sit at the picnic table and continue where I had left off earlier in the morning, reading and recording the verses where the phrase, “steadfast love,” appears. I had started this quest last Fall, but stopped after finishing Psalm 119. The notebook of references fell to the bottom of my upper right dresser “junk drawer” and it wasn’t until yesterday that I found it.

Lost in thought about the Psalms, Mom comes back to the kitchen and starts talking to me about using rice as an Occupational therapy exercise. Taking into consideration how the numbness in my hands affect my feeling, holding or picking up objects (I demonstrated with my medicines,) Mom continues to explain this simple exercise in an excited fashion. Totally missing a few context pieces to the conversation puzzle, I just understand that if you put rice in a bowl with objects, such as beads or coins, use your hands to feel around for the objects (because you can’t peek in the bowl for them), then it helps–not only your hands and finger touch awareness–but strengthens the mind. It’s like a psychology OT exercise! Stimulating!!

Instead of sitting around the picnic table, Dad suggests sitting under the tree nearer to where they are working. It was lovely! As I am getting ready to pull out my Bible, Mom asks if I wanted to try the rice bowl activity. “Sure,” I say. Mom goes in and gets a bowl of rice and places in “hidden objects” for me to find with my hands. The objects slowly discovered: nice sized wooden beads and pennies. “How many pennies are there?” Mom turns her head so I can lip-read, “Twenty.” Twenty? I found two. 🙂

It amazed me how just weaving my hand in a bowl of rice “looking” with my fingers for objects, felt like an exercise. My hand was physically tired; I rotated between left and right. My physical therapist had commented on how much atrophy she saw in my hands, then showed me a strengthening exercise to help with the curling fingers. But it persists. The hardest part of nerve loss is that it can never be regained, though I can keep it for as long as possible if I retrain my brain using the muscle exercises. It might not amount too much, but it is better than being idle.

The book that I had finished before dinner is an autobiography titled, Life, In Spite of Me: Extraordinary Hope After a Fatal Choice, by Kristen Anderson. At age 17, Kristen had lost all hope to live and attempted suicide by laying on a train track one block from her home. But she did not die. God, in miraculous ways…unfathomable ways…spared her life–a second chance. Through the long, hard recovery, Kristen came to know the healing power of God’s forgiveness, mercy and grace. Although she didn’t understand God’s timing, she started to share her story. She had questioned what life would hold with no legs…her future…but the more she shared, the more outflow of how her testimony helped others who were hurting came to light. Feeling God’s call, Kristen started in full-time ministry and founded Reaching You Ministries.

There are moments in my life where I question my abilities, strengths and future. It is not an easy road…and unlike Kristen, my body will never recover here on earth. But the encouragement and hope I found in Kristen’s testimony gave me the reassuring peace that my abilities, strength and future are not like the shifting sands…but solid, unshaken…held in God’s hands.

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.


On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground isinking\

“The Solid Rock.” Edward Mote. 1836.


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

Everything I Am Not

In season three of The Andy Griffith Show, there is an episode titled, “The Great Filling Station Robbery.” In the beginning of the show, we find Deputy Fife (as usual) trying to bring the Mayberry jail to more modern terms with technology, though it is not needed. As the episode progresses, the Filling Station has a theft problem. A troubled teen named Jimmy had just been given a job there to assist Gomer in the pile-up of cars needing to be fixed while the owner, Wally, is away. Because of his troubled past record, Jimmy is blamed for the robbery. Andy takes the calm road and waits for the next evening to see what happens; Barney, of course, sets a flawed attempt of greatness to catch the crime in action and jumps to conclusions. At the end, it is Jimmy’s knowledge in modern technology that catches the true criminal in action, proving that he was not what everyone thought he was to be.

Although Deputy Barney Fife didn’t do anything to solve the robbery, the ending minutes can make you giggle when Barney calls his gal, Juanita, at the diner. In typical Barney-ego seriousness, he recites a poem:


Juanita, Juanita…lovely, dear Juanit

From your head down to your feet,

There’s nothing half so sweet–

As Juanita, Juanita…lovely, dear Juanit.

Oh, there are things of wonder of which men like to sing.

There are pretty sunsets and birds upon the wing.

But of all the joys of nature, none truly can compare

with Juanita, Juanita…she of beauty beyond compare.

Although I don’t recite poems comparing a sweetheart to the joys in nature, I have found myself lately in a state of comparison, usually in physical terms only. I can compare myself to others placing myself above them (judgmental) or placing myself below them (insecurity). Yesterday, I did both.

Being disabled, it is easy to find yourself in this position. I wonder if any other disabled individuals can also agree to this, but personally, I find myself comparing my physical and mental state towards other disabled individuals. There is always the persons that are far worse off than yourself; sympathetic thoughts towards that individual mingle with your own thoughts of gratitude…”I’m glad that’s not me.” And it is wrong.

On the other spectrum, there are those who you may consider not as bad as what you endure, so you place yourself above them in judgement. This is my downfall. In comparing myself to others in this way, it makes my own pains seem not as heavy. And it is not so much a condemning judgement, as it is maybe more self-pity; a “I can no longer do these things, but you can…” But even this thinking is wrong.

Comparing myself to anything other than what God holds true in my life can only be “half so sweet…” and I miss the purest blessings of reaching out to those around me.


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

NF Walk 2014

Last summer, I had the opportunity to take part in the Children’s Tumor Foundation NF Walk. This fundraiser walk proceeds funding for continued awareness and research about the disease, as well as treatments for those individuals living with either NF1 or NF2. The Children’s Tumor Foundation selects cities across the states and holds this event all throughout the summer. Last summer, I got the information for the walk taking place in Cincinnati. It was more a spontaneous decision, but I was very humbled by all the support we quickly raised.

Participating in the walk was very special. At that point in time, I knew my options for treatments were getting slim, but never imagined the upcoming year that lay ahead of me. So while we were waiting for the walk to begin, we chatted with some other participants, who all had NF1. I was not surprised…I actually think that I was the only NF2 person there. Sitting down for a few minutes, Melissa came with the idea to write why we were taking part in the walk:


When I learned that the NF Walk would again be in Cincinnati this coming June, I knew I would want to participate. Last year it took me an hour to walk the two-mile course…I used my walking sticks and towards the last stretch, depended on the arms of my sister and aunt. This year, my plan is to push a wheelchair–when I no longer have energy and need to rest, I will depend on someone else to help me to the finish point..walking the second mile.


My Team name is”A Mile in Mel’s Shoes.” Through this blog, you have experienced the journey right alongside me–the sorrows and heartaches, questions and pondering thoughts, cheerfulness and laughter. Unlike the set course of the NF Walk, the next mile in my life is uncharted. It is a walk of faith. You have walked the first mile in my shoes–and I know you will be there, ready to continue walking another.

Linked below is the website for Team “A Mile in Mel’s Shoes.” If you are interested in joining me, my parents and two best friends since grade-school (coming for a weekend visit! 🙂 ), click on the “Join my team” button for registration. If you would like to give in donations, please select “Donate now.” You can also donate to a team member’s personal page (names are listed at the bottom of the Team page), where comments can also be written. All donations given on either goes towards the team goal.

Click here for link: Team A Mile in Mel’s Shoes 

If you would like to send a donation by check, please send it to the following address:

Children’s Tumor Foundation

120 Wall Street, 16th Floor

New York, NY 10005-3904

– – –

Thank you for walking with me. The journey continues, one step at a time.


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