Category Archives: Family Times

July 11, 2014 · 6:27 pm

Double Check

For the fourth time in the past two weeks, Mom and I headed down to the CEI center at Blue Ash (Cincinnati suburb). On the way home today, I think the view and drive was starting to get strenuous and well, boring. To lighten the mood, I suggested the next time we travel down, we play a game–“Like, guess what book I am thinking of!” It definitely lightened the mood. 🙂

Last week, it was the left eye cataract correction on Tuesday, with an immediate follow-up appointment on Wednesday morning. My last left eye check was this past Tuesday, in which the doctor told me that the eye looked really good! To hear this and see that my sight is clear made the day! (I am not certain, but I feel I did better too in reading the letters on the wall.) 🙂

I was born with a lazy left eye. Being a baby, I don’t remember anything, but it seems from stories that up until my eye correction surgery (around 11 months old), I didn’t see clearly. After my surgery, Mom took me outside and I touched every leaf in sight; almost as if there was a whole new world to explore…waiting just for me.

Then came glasses: After my few years of cute, red, circled lenses, I started a new school with new frames. It was not the fact that I was a new student that made me popular; It was the patch that I was required to wear over my right eye, so that my left strengthened. I’m not sure if it worked…when I am tired, my left eye drifts–pictures are evidence. Regardless, every year growing up I would have to take an eye test. Until the seventh grade, when lenses actually could be strong enough in prescriptions for my basic near-sighted blindness, it looked as if I wore goggles. Being about the only kid in elementary school with such spectacles, my peers would ask if they could try them on. “Be very careful,” I would say as I watched them just about fall over when their perfect vision met my blindness.

My eyes reached a plateau around high school, and I only had eye tests so that they could monitor my optic nerves through visual field tests. New glasses frames for college days, and I didn’t have an eye test again until I moved here. All was well until the first time the optic nerves started swelling in 2012. My right eye has been my strong eye. Almost perfect vision, it has carried the weight of both eyes for years. Just like my two blood clots, though in the same leg and same area, the side effects were so vastly different that I didn’t recognize the second clot as a clot. This is exactly the same situation for the nerve swelling. My first experience was a solid black dot in the right eye that would follow my every move. This time, it is the grey “veil” appearance that has changed over the past few weeks since doubling the eye medicine.

Seeming that the “veil” was worsening…there are days when I almost cannot do anything without refocusing my eye or it is as if I am seeing through an appearance like looking out the window through a shade or blinds…at my Tuesday appointment, they scheduled me for a regular visit with my ophthalmologist. After talking all my woes–there are many other observations–he checked my optic nerves and reported that the right nerve was just a bit smaller. Why the nerve is smaller yet then side effects more often and in a larger circumference of the right vision? I am not sure. The good news is that the nerve is not larger! The plan in sight for now is to remain on the twice a day, doubled dose optic nerve medicine, rechecking with a visual field test in late August.

Last night, I woke around 2am…just drifting back to sleep, I started mumbling sorts of prayer requests that came to mind. Then I remember saying, “I don’t want to be blind…” I don’t remember anything after that.

Faith is like being blind; it is like when my eyes are unable to focus in the sunlight and my walker becomes wabbly–and when I am about to stumble, a strong grip from a family or friend holds me in place, Faith holds me in that place…where there is still hope.

“Hope In Sight” by Out of the Grey
(2nd verse) Peace, when it goes
Oh, it leaves me with just one hope
No matter how near or how far
Your light is the brightest star
There is hope at both ends of the telescope tonight

Chorus: There’s hope in sight, hope in sight
If seeing is believing, then call me a believer
Hope in sight, there’s hope in sight
Now that I can see You through the eyes, the eyes of faith

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July 5, 2014 · 10:22 pm

Round and Round

I never took note of how many circular objects you can encounter in a day. It can start the moment that you get out of bed…for me it is taking my walker (circular handles) to the bathroom and brushing my teeth. Circular toothpaste tube, toothbrush handle…the hair accessories such as mousse, hairspray–I finally resolved my shampoo and conditioner bottles had to contain the pump lid or I didn’t purchase it.

Then you enter the kitchen: cups, retrieving coffee creamers or my water bottle from the refrigerator, medicine bottles (specifically a big container of Miralax that seems to enjoy being dropped to the floor,) my special utensil handles, the coffee pot handle (mugs included) and many food itemed jars or containers. Let’s not forget to mention food…even just a few minutes ago it was my sweet potato. You have handles on the stair railings, my painting tubes and paintbrushes, and even the mouse that is battery connected to my laptop. This is just a few things in my house…the list can go on, even down to the Communion cups at church (someday it will be impossible for me to hold one of those without spilling!)

Psalm 150 describes praise to God: praise Him in all things and for all things. You can praise God with your life in many ways, but the psalmist goes on to describe musical instruments, in which can be a mode of how you make a joyful noise to the Lord (in praise): verses 3-6

Praise him with trumpet sound;
praise him with lute and harp!
Praise him with tambourine and dance;
praise him with strings and pipe!
Praise him with sounding cymbals;
praise him with loud clashing cymbals!
Let everything that has breath praise the Lord!
Praise the Lord!

I’ve never been one to consider clanging, or loud clashing, of cymbals to be melodious. And it is not my intentions to have problems grasping circular objects either. It comes as the numbness in the hands increases. Numbness makes it not only weak in grasp, but my fingers to be slippery as well. [The same for my feet: if I am barefoot and standing on carpet, my feet will slide. It is very strange.] In all this, there are some days when the hands just can’t seem to get it right and I spend most of it sounding like a parade of clanging cymbals.

I think by now my parents are used to the excess noise. However, there are a few times in the mornings where they check in to reaffirm that all is well. In these cases, especially the ones where my hands can’t seem to hold the mousse or hairspray bottles, I think of the Muppet’s character–Dr. Teeth. In Jim Henson’s The Muppet Movie (1979), Fozzy Bear and Kermit the Frog first meet the Electric Mayhem in a Presbyterian church. In their rock and roll fashion, the band doesn’t see the visitors until their song is over, to then Dr. Teeth acknowledges: “Our gentle morning melodies has attracted wandering admirers.” Some morning, I might have to quote this. 🙂

Because I am deaf, I don’t hear the volume of loudness or crashing dialects when items fall out of my hands. But since I have an imagination, I perceive that they do not all sound alike based on heaviness and materiel make. In saying such, I was startled to find that my “morning melodies” did not cause Mom’s appearance to the kitchen at a faster rate. In dropping items, it normal to have my inner independent pride state phrases as, “I got it!” so it is known that I am fine. If Mom heard the noise, she had every right to assume that I had the situation controllable…which in this one, I did not.

I had been rummaging through my pantry shelf when I discovered a hidden jar of instant decaf coffee pushed to the deepest back corner. Retrieving it, I picked it up (with the right hand) by the lid (Yes, a very silly error on my part!) About middle to the shelf opening I reach my left hand in to help hold the bottom of the jar and fully retrieve it. All happening so quickly, my right hand slips and in doing so, the lid pops open. Trying to save a mess, I fumble with the open jar, but alas, it crashes down–taking with it the remains of instant decaf coffee beans. It just about covered the food and picnic style items we store there on the last few shelves of the pantry. Somehow it got a circular coffee bean slogan on my shirt and all over the floor as the jar (which resemble glass) finally touches ground. (Did I mention that morning I was barefoot?)

I stood, did a little “gasp” then muttered,”Oops,” with a little giggle–though at this point I am contemplating two things: Mom’s reaction and how I am going to clean the mess. My phone was with my walker a few feet over, so I could not text Mom. I didn’t think the story was one for a Lifeline call, so I didn’t press the button. I wouldn’t want to start their morning with this kind of conversation:

Operator-“Melinda? Are you okay?”

“Yeah. I just spilled my coffee.”

Still no Mom, but I was still apprehending the conditions and not really trying harder to get her attention. I suppose I could have just tried blurting out her name, but there I stood, motionless and bewildered. And that’s how Mom finds me when she finally entered the kitchen. One look at me and she bursts into laughter. Laughter…it puts me at ease and I can finally laugh myself without guilty thoughts of finding the situation a little hilarious. Mom gets the vacuum cleaner and the clean up begins; she didn’t inquire about the happenings, though I told her the story anyway.

As much as I try my best, there are some days when my body just can’t seem to get things right. It resembles morning melodies much like a clashing cymbal, so vastly different from the boldness of trumpets, the soothing lure and harp, or graceful dancers that I could desire it to be. And while everything around me clashes simultaneously, I stand motionless, bewildered as if apprehending my current and future state for the first time. But I am not. It has been years of journeying to be able to reaffirm that in all things, God has something greater in sight; to say this doesn’t make me a hero, it makes me vulnerable..because all I currently see is the remains of spilled instant decaf coffee.

Praise isn’t just the simple morning melodies. It’s a trust–and every time a little more of what remains is taken, God says, “Do you trust me?” It is now up to me to decide.

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June 24, 2014 · 10:42 pm

NF Walk–A Mile in Mel’s Shoes

This past weekend marked the NF Walk that took place in Cincinnati. Being my second year attending, it had both similarities and differences: Same park, same 2-mile trail, same purpose–to raise awareness of the disease (NF1, NF2 and Schwannomatosis) and fund raise for The Children’s Tumor Foundation, in order that the research for new treatments may continue. Like the year before, the presence of Storm Troopers resulted in group pictures and rounds of high fives. Except this year, as the Storm Trooper started talking to me, I just looked at him and said nicely, “I have no idea what you are saying, because I can’t read your lips.” Maybe it is because he is used to little children “oohh, Storm Trooper!” responses, I think my comment caught him by surprise as I noted the way that he tilted his head and then looked at my friend, Tasha. haha. Not much he could do there to fix the situation, but he did talk a bit more (I assumed) about this as he was making hand motions around his “still lips.” It was kind of obvious that most people don’t small talk to Storm Troopers in this way. None-the-less, after our many pictures, he ventured to other participants and we got ready to start the walk with the others.

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Last year, with my parents gone to Colorado for a conference, my team–“We Walk With Mel,” consisted of my sisters Marcia, Melissa (brother-in-law David) and my aunt/uncle who drove up from NC as a surprise! The Children’s Tumor Foundation hosts many walks throughout the summer in different major cities. Last year, there was a walk in Denver in the early Fall. Unable to physically attend, I was there in spirit as my childhood friend, Tasha, teamed with sister Megan and roommate from college, Calli, to form their own team in my honor to walk. It was very special to see the pictures of friends I grew up with or went to college with there in Denver walking the course for the CTF. I am very humbled and blessed by all the support given both last year and this year for this cause. Thank you.

This year was exciting, because the team, “A Mile in Mel’s Shoes,” had ten people! My parents, Melissa and David, my friend Tracy and her kids–Seth and Lexi–and this year, Tasha joined me here on the walk with our other childhood friend, Chelsea. What a beautiful day it turned out to be, even with my initial plans of pushing the wheelchair until I needed rest flopped. Sitting the whole two miles was not frustrating or embarrassing; for the first time, I did not feel like I was a burden, even though I weigh 150 lbs. and it was HOT and humid. My family and friends took turns pushing me, with the hills and lows of the trail–they led me to the very end of the course and cheered with me upon finishing.

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Team “A Mile in Mel’s Shoes” was physical evidence that no matter what you are living through, those who love and support you will see you to the end. Likewise, the team is surrounded by those who were present in spirit…praying and contributing financially. When I think of all those in my life, I am seeing the fullness of how one life reaches to another: Some may have to cheer to you from the side-lines; some may have to walk ahead and when you need them, they call out to you offering advice based on their own journey before yours. And still others may just walk beside you: They cry when you cry, laugh when you laugh, or carry you when you don’t have the strength to do it on your own. In my own journey living with NF2, I have been surrounded by these all in their own ways, in God’s timing. And I am in awe of God’s goodness in this, because I could never in any wildest hopes or dreams, make it on my own.

No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you.

John 15:15, ESV

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June 18, 2014 · 10:55 pm

The Room at the Inn

I’m not much help in preparing the bedroom upstairs for my friends visit this weekend. The main problem is that I just can’t get up the stairs…every step says, “Caution!” Like a trail of red flags, so I just don’t enter. Even if I got upstairs, I am useless in changing sheets; So I resolved to help with any needs for cleaning or preparing either on the main floor or the basement (where we will be using my painting studio to decorate with fabric paints the t-shirts for Sunday’s NF Walk.) 🙂

With thoughts of vacation, I couldn’t help but giggle in memory of my hotel experience from the Colorado trip two weeks ago. Last Fall, when I was having weekly PT and OT sessions, my Occupational therapist and I discussed a wide variety of ideas to supplement my needs in the areas where I was physically struggling to perform the daily tasks. She also helped me be aware of resources available for when in time I needed more help. Most of the “when in time” resources seemed irrelevant at the moment, since my physical body overall was doing pretty well.

“When in time” moments started catching up to me around February–I think the first being the shower chair. At first I was embarrassed–even to show people my room was enough, because with the bathroom door open, you can see the raised toilet seat handles. Not your typical bathroom. But I quickly dismissed this notion of blush, because it is when I realized that being independent in this area, I saw a blessing.

My OT mentioned a few other future reference ideas, one being the handicap room in hotels. At that time, I had only purchased the walker for my PT exercises as balancing in my Ankle FootDrop braces was near impossible. Even in February, I only used my cane when I left the house. Now the use of my walker is 99%. I even purchased a second walker to keep for house/back patio/basement use, while the older one is left in the garage for when I leave. The plan has worked smoothly, I think.

There is a first time for everything and the Colorado trip held no exceptions. There was the new way I checked through security, pushed in a wheel chair and now the hotel room. Mom and Dad helped reserve a handicap room, but before one gets to their room, they must get in the hotel. We pull in the parking lot and see the main lobby doors cut off in entrance by the yellow “Caution” tape. Looked more like a crime scene from Law and Order episodes. Mom goes to check-in using the only other door on the building,which is the back entrance.

The room itself is quite nice. The only significant difference I noted between this labeled room and a regular room was the bathroom. The doorway allowed room for a walker or wheelchair to easily enter and maneuver around. There was a handle attached to the wall by the toilet, along with a telephone. I suppose if you fall off the toilet, the assumption is that you can reach the telephone to call for help. The shower “chair” was what made the whole first-use-of-handicap-room experience worth it (in memories sake)!

In conquering difficult situations from the eye and body of a disabled person, I often mutter to myself (sometimes probably louder than I should) the fact that if TLC ever wanted a new reality show that I would volunteer; a show following individuals with disabilities and how they overcome the obstacles they face daily…what ones make them cringe, cry, laugh. What situations are easy or ones that are absurd. Most importantly, how it affects those closest to them. Anywhere I travel, someone has to retrieve or pack my walker from the trunk; I can get locked in public restroom stalls, because my hands can’t get the knob to open; or retrieving items at the grocery store often requires a helping hand. Mom and I like to swiftly shop our lists separate, so the last time I was choosing a coffee creamer, I asked a kid looking at the sour cream next to me if he wouldn’t mind helping me get the bottle, as I was nervous to drop and have it crack, then spill (just from previous experience at home.)

It is in this “reality show” thinking that I had to laugh. I envisioned the crew filming me as I show the viewers how the shower is set. It was like camping. At the one end, the shower is the standard shower head (but you could detach it)–the other end is “the shower chair.” Now, I can’t complain, because being able to sit was appreciated; however, this wooden beam of a chair that you folded up and down (but was too heavy for me to fold up upon wanting to get out of the shower) was right in the way of how you normally exit a bathtub style shower. I was barely able to keep a grip on the handles and was thankful not to have fallen completely out. The next shower, I had to have Mom fold the beam up for me before I exited.

I understand that some hotels are older, but in the newer hotels–like the one we stayed in the night before our fight back–I do not understand why there has been no consideration for the shower set-up in handicap rooms. One would think that a walk-in style shower with a sturdy set chair attached would be more efficient for those who cannot get themselves in a bathtub shower. The thought just crossed my mind that weekend as the first hotel gave me much more insight to think of as well: if you’re remodeling the lobby, please make your residents aware that there are missing tiles on the floor when they come in after two days of no continental breakfast to find the place empty of chairs or tables. We used my walker to transport the served cereal back to our room. 🙂

I may sound on a rant but I don’t mean for this to be so. I just want to make people aware that life brings unseen hurdles in your path and sometimes one needs a helping hand for safety–hence the handicap ramp in the hotel parking lot. Quite frankly, I would not have even called it a ramp, but a slab of steep, skinny, sloped concrete. It was only wide enough for my walker, so if I were using a wheelchair, I would probably have felt safer just hopping the curb. There was no hand railing either; I wanted to quote Marlin from Finding Nemo: 

Bob: Hey, you’re doing pretty well for a first-timer.

Marlin: Well, you can’t hold on to them forever, can you?

Bill: You know I had a tough time when my oldest went out to the drop off.

Marlin: They’ve just got to grow up som – THE DROP OFF? THEY’RE GOING TO THE DROP OFF? WHAT ARE YOU, INSANE? WHY DON’T WE FRY THEM UP NOW AND SERVE THEM WITH CHIPS?

Bob: Hey Marty, calm down.

Marlin: Don’t tell me to be calm, pony boy.

Bob: Pony boy?

Bill: You know for a clownfish, he really isn’t that funny

Ted: Pity

🙂

Never before my own handicaps and disabilities did I even think of these situations or how an individual lives each day overcoming even the smallest of difficulties. I’m not suggesting that life be easy, because it’s not and experiencing scenarios such as these is very humbling. It keeps me aware of my surroundings and ever thankful for the help in time of deepest need.

*Finding Nemo. (2003). http://www.imdb.com/title/tt0266543/quotes

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June 17, 2014 · 10:00 pm

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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June 16, 2014 · 11:59 pm

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.

Refrain

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

“The Solid Rock.” Edward Mote. 1836.

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June 13, 2014 · 12:22 am

Road or Air?

Road trips. Yeah, I just laughed out loud at the memories. If I were an author, I could write children’s novels on the subject using my family’s experiences and adventures. As a family, we took many road trips especially in the younger years–even when Marcia was in a car seat. I don’t know how my parents survived.

My extended family circle is big. I am extremely blessed. When my Dad felt led by the Lord to move West (Colorado) for work, my parents made every effort to make certain that we kept in touch with all three sides of the family. Because of this, road trips took different directions: one year, we would go northeast states in a loop, squeezing in as many family/friends as we could in the short period of vacation time; the next vacation, we would go in the opposite direction doing the same pattern. Road trips also gave an opportunity to visit historical places and other tourism specialties in different cities.

In our suburban, there was this unwritten form of conduct for the seating. Because Melissa and I didn’t get carsick, we were always smashed in the backseat. Melissa’s long legs could only handle so much of the no leg room and for myself, my pet-peeve was not being able to hear the music. Literally the example: No one is talking, so I ask, “Can we turn up the music, please?” Mom turns up the volume. As I have now broke the silence, now everyone is talking or bickering between the middle/backseat–Mom turns down the music. Unfortunately, the only music we never wanted to ask to be turned up was Dad’s oldies. I finally learned to appreciate them (before I went deaf.)

Now, the backseat was responsible for getting the snacks, packed lunch or Dad’s Diet Pepsi from the cooler. Being efficient packers, the cooler always landed in the farthest back of the trunk, in which one had to unbuckle their seat belt to practically climb over the pillows and duffle bags to get in the box. Somehow, someone upfront was always hungry when the backseat persons were sleeping. The middle seat was responsible for the trash bag. I am not sure why this was a big deal, but most of the seat bickering was based on the trash bag, or the fact that they had controls for the air vents, their windows rolled down and they had the best seats when we played the Alphabet game (of course, Dad driving had the best seat of us all!)

When we started traveling by plane, I liked the convenience of getting to our destination quicker and always tried to act more mature when we sisters got to sit by ourselves apart from Mom and Dad. The only real code of conduct our family has for air travel is that we get to the airport a prompt two hours early to check in our luggage and get through security. Traveling the air was a breeze, until this time my ticket officially labeled me as a disabled passenger.

The disabled label does not have any real grasp on my mentality…it used to irritate me significantly, but now it is something that I have come to acknowledge. My disabilities are not always visible, which is why no one fully understands the amount of physical pains, pressures and problems that my body endures. I don’t blog about this subject–even though it is one of the biggest physical challenges I daily encounter–but to understand the significance of my fear for this flight, you must understand that like any other area in my body in which the tumors destroy the nerves–there is disaster in waiting. In this instance, it is my bowels. I have little to no control of them or their patterns. I often feel controlled in fear of having accidents; no 26-year-old should be having accidents, but it has happened. It’s humiliating.

So as I started preparing for the flight to Colorado, I felt fear take a strong grip over me and I asked a few close friends to join 1me in prayer about this–I needed peace. Our flight out left at 7am, so in code, we arrived to the airport around 5:15am for check-in and security. We checked in our two suitcases, as well as my walker. I was then pushed through security and only stood (Mom holding one of my arms to keep me balanced) when they performed the security pat-down. Passing the requirements, we headed to our gate.

You can tell that it was our first time traveling in this manner, because when we arrived at our gate, we said our thank you to the girl who pushed my chair and then she left to go help another wheeled chair passenger. When they joined us, Mom and I saw the lady tip the employee. As she left, I looked at Mom and she asked exactly what I was thinking: “Were we supposed to tip her?” We looked in our wallets and resolved to use what few dollars we had to tip any others that help in such a manner. 🙂

Being a disabled passenger flying Southwest airlines is sort of like having First-class seating. I was wheeled to the plane door, then helped to the seats…Mom and I decided just to sit the first row. There is a first time for everything. Still nervous for the flight, Mom gives me reassurance prep-talk and soon the plane is running down the airstrip. I remember take-off. Then sleep found me. We landed in Denver and I was one of the first few of the plane, once again pushed in a wheel chair to baggage claim, although this time they buckled me in…which I found quite hilarious! It made sense, however, once we rode on the concourse terminal train. I have never felt so much freedom at the sight of my walker waiting for me at baggage claim!

In both my flights, I had to completely surrender myself and trust in God’s protection. It was NOT easy! But I saw answered prayer; I lived answered prayer. On the last day of meeting friends, I had the chance to see my interpreter from CCU. We were discussing this flight story and I told her that I had been challenged by the experience. How often it is that I say the simple phrase, “I’m praying for you.” Then I forget or say it once quickly, then get busy and move on with life.

It humbles me to know that I have prayer warriors who daily lift up my name to God; they present my personal, detailed requests…as well as the need for comfort and strength. Prayer in my life, as of late, has seemed to be an unwritten code of conduct–very formal, lacking zeal. Like the Disciples (Luke 11:1-4), I often in question say, “Teach me to pray.” And I know He will answer.

The function of prayer is not to influence God, but rather to change the nature of the one who prays.

Soren Kierkegaard

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June 12, 2014 · 3:05 pm

So big, so Mighty

Last week, Mom (as my travel buddy) and I had the opportunity to go to Colorado for a few days visit. It had been two years since I have been back in the home state–I needed to see mountains. I needed to see friends. When I first presented the idea to my parents a few months ago, the first thought was to go in August after the art show and MRI. But around the time in early March when my body started rapidly changing, different plans came to mind.

“Should we go earlier?” Mom asked me one night as I stood crying in the kitchen. Thus, the plans changed, but as I now see, for the better and in the goodness of God’s timing.

Living towards the more eastern half of the states, car travel is different. From my house, a 7-8 hour drive can land me at least two or three states over in any direction. When one is in Colorado, even a 5 hour drive from Denver will only get you to the San Luis Valley (if headed south)–and that is where I grew up. On the previous trip in 2012, we did a full circle from north to south seeing friends, my sister and brother-in-law, and I was in two weddings. This trip, I had to cut the state in half, so to speak. This trip was seeing friends in the Denver and Estes Park areas. The physical traveling was a challenge, but ever so worth it!

One of the friends visited was my former roommate from college. We were roommates all but one year, when housing filled fast and the option for a room didn’t work as we had hoped; it didn’t really matter anyway, as she just lived the floor above mine. It gave me the opportunity to get to know others on campus from being with new roommates and I grew deeper in my faith from experiences that year as well.

Freshman year at CCU is where my name “Mel” first started. To “decorate” our bedroom door, we made a sign that read, “Cal and Mel’s Room.” The name stuck, and as I started to use it, it just fit. I was eating lunch in the cafeteria with Cal the day she met the new basketball transfer student, who is now her husband. Now parents, I get to be Auntie Mel to her boys.

Before the trip, I was Facebook messaging with Cal and told her that I was sad Auntie Mel would not be able to get on the floor to play with their 2-year-old son. That aspect didn’t even matter as when I got there, my walker was more interesting! The best part too was that this little man loves books! Auntie Mel can read books. 🙂

After reading Harry the Dirty Dog, a book about firetrucks and an I Spy book a few times, one of the books he picked had words and pictures for kid songs such as, “Jesus Loves the Little Children.” A two-year old must not think much of a deaf girl’s singing pitch, because he didn’t seem to give any weird glances in my direction when we started singing. Cal and Mom joined in and we sang, “He’s got the Whole World in His Hands” with motions. It was then that I asked if he knew the song “My God is so Big” and sang it with the motions.

Sometimes the best reminders of God’s mightiness is in the simple truths, in child-like faith. Trusting God in this trip was the biggest lesson, challenge and visual confirmation of answered prayers that I have ever experienced in such a short period of time. Truly, “The mountains are His, the rivers are His, the stars are His handiwork too.”

So strong, so mighty–“There’s nothing my God cannot do!”

 

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May 30, 2014 · 10:54 pm

To Feel Numbness

This past Mother’s Day, we decided to treat Mom with a picnic at the state park just down the road. It was such a lovely day! After the Frito taco style lunch, everyone played some outdoor games…I focused on Frisbee and amazed myself how good I could catch while sitting on my walker. Throwing it back to another person was a different a story. The day had me thinking of years past where we would take family picnics in the mountains. But instead of picnic birds and cute chipmunks joining the feast, we just had bugs. While Melissa’s pup, Basho, tried to eat a caterpillar, I was distracted with a few baby spiders crawling around at the end zone of our picnic table cover.

“They’re in nature and they’re so tiny,” I kept telling myself. Mom and Dad have done a pretty good job of keeping spiders out of view in the house–it has been a while since I have even seen one so close. I think the time helped calm my previous state of hyperventilating in arachnophobia; even watching The Hobbit: The Desolation of Smaug. was more tolerable (of course, Marcia and I were a little distracted too at that part, as we were attempting to get my caption specs to work properly!)

Anyway. back to Mother’s Day, the sun was shining and not yet having my sunglasses on, I was in squint mode trying to keep up with all the lip-reading conversations. Up until this point, lunch had peacefully survived without epidemics of girlish squeals of bugs–but I broke that trend when all of a sudden, I realize that this is no cataract fuzz in my right eye view. It was a spider! And it was no tiny baby one at that either! My first reaction–the glasses got thrust off with my left hand and shoved into Dad’s face (well, more like over his plate that was still full of Frito taco lunch.)

“There’s a spider on my glasses!!” Dad takes my glasses and flings the spider off into the grass. I continue, “Gross! I am infested with spiders!” Still disgusted, it occurs to me, “That could have been crawling on my face!” And Marcia confirms, “Well it was on your arm.” Yeah, thanks for the warning.

I am not certain as to why numbness is a side effect of the tumors. I understand muscle atrophy and weakness, but not the numbness or why/how it also affects the muscle weakness too. I can’t even tell you when the numbness first began…I don’t remember. All I remember is that it started in my left ring finger at the tip. Slowly over time, it progressed to other fingers in the left hand and my toes. A definite turn took place the summer of 2010 when the tumor on the 5th Nerve doubled in size, suddenly leaving me with intense jaw pain. I first thought it was TMJ, as others in my family have the condition, but as soon as I felt the first tingles of numbness I knew it was tumor related and it was confirmed by the MRI results.

Numbness in the face was strange at first–now, it covers everything: forehead, gums, cheeks and neck. As of this past week, I have confirmed numbness in  the upper left lip. Mom says it is not noticeable, but if you studied my face closely, you can see the lip is a bit poofed and that makes the lip slide to the right (just a tad, but still, I see it.) It’snot just my face…my feet (can’t really wiggle my toes anymore), whole left leg and right arm and hands…areas on my shoulders and back too…numb.

It is hard to describe “numb.” One would assume when you’re numb that you don’t feel anything. Almost but not quite. I feel things, depending on what it is. Just examples: I feel the ground when I walk and I feel what I touch with my fingers (minus the right pinky and my grasps are very weak); I can’t feel temperatures in the hands or feet, so it is hard for me to tell if my feet are really cold or if the plate coming out of the microwave is hot. Numbness tingles like when you come indoors after being outside on an extremely cold day–the thawing effect. Numbness is heavy. Numbness is a pain (although too figurative, I am implying the literal definition.)

As I was thinking of numbness this week after confirming it in my upper lip, different situations came to mind. I found myself, in numbness, with a burden for those who hurt deeply (physically, mentally, emotionally, spiritually.) Whatever state, I realized that people in immense pain use “numbness” (or the forms of action in a way to numb the pain), to escape pain (or the hopes of escaping their current suffering.) But you never escape through numbness–because you feel numbness…it is heavy, it is a pain. Numbness (or the denial of the situations/conditions one is living) is not the answer.

“Held” by Natalie Grant

(*Second verse)–This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

 

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May 27, 2014 · 10:43 pm

The Garden of Roses

They say that walking is the best exercise, and for myself, I agree one-hundred percent. This weekend was too nice to stay indoors, so my parents and I ventured to a new state park on Saturday for some walking of trails. The first trail seemed very nice; when I think of parks, this is what I always have in mind: paved trails, trees that provide shade and the occasional bridge walkways where thick underbrush or tricking streams are underneath your feet. This one had it all and the destination of the first trail was a waterfall. No sign mentioned sand (like a beach.) We near towards the area where the falls is located and I mention that the area looked much like Mesa Verde, minus the ancient cliff-dwelling houses. Then I get my walker stuck in the sand.

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There was a set of stairs (far off behind the rock in the picture) and realizing walking in the sand is worse than grass, I told Mom and Dad that I would take a rest while they saw the falls. It was an enjoyable sit…and I was able to walk part of another trail that night too.

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I probably should have taken a nap on Sunday, even though I did “rest” by simply sitting and reading, but I am not sure if that would have fully helped yesterday anyway. Scheduled for a fun day at Melissa’s, we started with a delicious brunch: gluten-free waffles, fruit, bacon and David made scrambled eggs with green peppers and onions (yum.) Eating and chatting outside on the back patio–and not drinking as much as I should have–I think my dehydration may have started then.

Columbus is filled with many pretty parks. We chose Whetstone Park, because they have a Park of Roses in the midst of it all. Maybe we were trying to make a loop, but we seemed to start randomly just by parking and cutting across the grass to the paved trail. Grass entirely wears me out, so by the time we get to the cement, my legs are already saying that they’ve had enough. Basho was with us and seeing him thoroughly enjoying himself–running everywhere, barking at the bigger dogs, never begging to be picked up or have a ride in my walker–gave me humor and something to enjoy besides thoughts of my slow walking.

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Once we reached the entrance to the Park of Roses, I was in my slowest state of walking. In every step, my mind kept saying that it didn’t want to take another, but then my feet would…like an automatic response to the word walk. We passed by the herb garden and I saw the perennials from a distance. I had greater expectations for this section, especially the roses; we were a few weeks early for full-bloom, but there were a few rose bushes in bloom and you could see the start of the rose section blooming as well.

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I didn’t venture far off the path, but as I am struggling to get to a bench to sit (that’s me in the left hand corner of the picture) and take a drink of over-needed water, I thought of Jesus. It just came to mind–all I saw was bloodied, dirt-stained, sandal feet moving forward one step at a time. Jesus wasn’t pushing a walker on a paved or grassy path; beaten beyond recognition, he was carrying the heavy wooden beam of his cross and walking up a hill (which I imagine was just a rocky, dirt path.)

He walked each step bearing the weight of my sin, my physical suffering. He walked each step in Love, with a promise to never leave or forsake me if I placed my trust in Him alone.

He walks with me to the end, until life forever in His presence.

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***All pictures taken by Bonnie Pinkerton***

 

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