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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June 1, 2014 · 9:56 pm

June

Turn the calendar page, another month is here,

DSCN3583

It’s hard to imagine that it’s already been half the year.

Flowers, gardens start to appear,

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Bringing colorful hope of the future so near.

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May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.

Romans 15:13, ESV

* https://www.etsy.com/shop/BrushstrokesbyMel

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May 31, 2014 · 1:10 am

NF Awareness Month

Well, it came and went–May, as I forgot and was reminded yesterday–was NF Awareness month. It was also Autism Awareness month. I don’t find it necessary to tell you facts or stories of NF–you have already read my blog entries. So, I will end this NF Awareness month with something different–none of the talk, such as, “This is a side effect of medicine or tumor function;” But talk of living life with NF2–because, I will tell you plain, it has, is and will continue to change my life.

Once in a conversation with my friend Jess, we discussed our thoughts and feelings about the topic of researchers finding a cure for our disease. I thought about it for a long time and finally responded to her email, saying that I cannot imagine life without it. Please don’t consider me a strong person, because if anything, this disease knocks you down. There are more moments were I detest my own body, wishing that I was something more rather than being thankful for what I have–in other words, as my body continues to unwind, I feel left behind.

Yet looking back at the road thus far, I am aware that life has been filled with divine moments. Moments where God met me in my lowest state and helped me back to my feet, never leaving me behind. And so life continues–to the end, which is the beginning of Life.

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Revelation 21:4

PS. I believe that God has given doctors and researchers the skills, resources and knowledge to help individuals suffering with illnesses, such as myself. Although at the current moment, there are no treatment options available for me, I still desire to walk with hope in the Cincinnati NF Walk, June 22nd, and support the further research of NF, along with those persons in which the research impacts through results, such as new treatments. If you would like to donate for this cause, there is still time: Team A Mile in Mel’s Shoes

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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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May 22, 2014 · 10:50 pm

Seeing Ahead

Last week I saw the surgeon ophthalmologist for the cataracts in my eyes. After a whole day (literally) of sitting in the waiting area or the exam rooms, I left the hospital with extremely tired eyes. Cataracts plus dilated eye drops does not equal a good equation. 🙂

I haven’t had an eye exam in close to two and a half years. When I see my regular ophthalmologist every four months, it is only a visual field test and a quick shining of bright lights in the eyes as he checks the optic nerves for signs of swelling. No dilating, no tests where they set lenses and click back and forth–in which you say whether “one” or “two” is the clearer option. Simple and fast.

That being said, this eye appointment was interesting. Not only were my eyes so dilated (you could hardly see the color of my eyes), but also the bright lights in the eyes were making lip-reading a colorful experience. Everywhere I looked seemed to be a mesh of sea-green and magenta. I also realized that taking the option “one” or “two” test, I needed assistance; if I was viewing the letters on the wall with Star Wars looking vision specs, how was I to know which number was with which lens? I solved the problem by explaining that Mom should stand next to me–when the nurse flipped the lens, she would say the number. Mom would then tap my hand either once or twice and I would say which option was best. It was like a signing interpretation in the dark!

When my optic nerves were swollen and I was seeing black spots in my vision, I started a medication to help keep the swelling stable. Even last spring when the MRI showed growth in 80% of the brain tumors, my vision was not affected and I am very thankful. Although, currently, I am not seeing black spots, seeing through a fogged lens is starting to annoy me. I am out of focus. A least at home I can squint; I was told not to squint when taking the “read the letters as far down as you can” test. Squint focusing was cheating. 🙂

The past few days, has been difficult. It is testing my patience. I left the hospital with a surgery date: my left eye will be corrected July 1st. It seems so long…the thoughts, “Can’t it just be fixed right now?’ come to mind. Maybe more so, because of all my health problems, this is one that can be fixed…it’s temporary, anything else I experience is a permanent loss.

This morning, the story of Jesus healing a blind man came to mind (Mark 8:22-26.) When Jesus first laid his hands on the man’s eyes, the man could see–but it was not clear: “I see people, but they look like trees walking,” (24.) It was only after Jesus laid his hands on the man’s eyes for a second time that the man’s vision was fully healed. I wondered what the blind man may have been thinking after the first time Jesus laid his hands on his eyes, or even the disciples who were also present. It is not important, but the story does show a testing of faith.

The answers to our sufferings may not come rushing in all at once; in fact, it is rare if they do. What I see ahead may appear hazed and out of focus, but it is temporary–one day Faith will be Sight.

Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

I Corinthians 13:12, NLT

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