Category Archives: Funny Stories

“What are your needs?”

I don’t know why or when I started this,, but somewhere along the spring days into summer, I started greeting Muffy with the question, “What are your needs?” Depending on the time of day or weather conditions or my own jolly (or not) attitude, my question is the same and I usually know what his needs are–food, being pet, or wanting inside. He sits at the back patio steps and when you walk past, he glances at the door knob, as if hoping it magically opens the door when we do not follow through with his requests of a cute “meow” gesture. Muffy is easy to lip-read.

At first, the question was just a funny randomness my family listened to me say, probably more times than their wanting in a day. They still hear, “Good grief,” or an occasional, “Epic fail!” My new favorite is quite studious, “Ludicrous!” Then in utter frustration, I laugh. Muffy’s question is now somewhat a joke on me. Not that we say it as a joke, but it makes the frustrating moments more at ease with a smile, if even just for the moment. Where Muffy’s needs are obvious, mine are not–and I still have a hard time communicating them.

“Thus disease is helping me be assertive,” I tell Marcia in our conversation this morning. I said it in a victory chant fashion, and when I looked across the table, Marcia’s facial expression said it all: no. I quickly added, “I am learning.” That sounded more accurate. I am not an assertive person; it conflicts with my personality. Even trying my hardest, I rank high in the daily needs. As my head reads the not-yet-asked-for-help needs list, I stand with hand clenched to the walker and do a “I hate being so needy!” dance…just bopping up and down as if doing PT exercises. Becoming dependent is where Satan is using my personality against me as I learn to let go of myself. I don’t like being assertive, because I don’t want to be bossy or offend. I like to help, not feel like a needy burden. Guilt is my number one enemy in this disease.

As I learn to speak my needs, I find myself in thoughts of how I can meet the needs for others. “Meeting needs” is like the phrase, “having a job.” I think in physical, tangible terms…probably because those are my needs. When I had to end my working days at Target, I struggled with not having “a job.” My personality and self-conscience was afraid of what other people would think– I didn’t want to just be one of those “unemployed, twenty-something-aged kid” loving at home. I see now the pride in that and I have been completely humbled in living at home; the sacrifices made by my family to met my needs can be more than a job for them. Yet they never complain…even when it is not the best of situations.

I believe God made us needy. We need each other and most importantly, we need Him. God desires for me to be close to Him, telling Him my needs and He listens–yet, even as I speak, I must be still and listen. God always meets my needs, even if I don’t ask or often in better ways than I would have imagined; a parallel…I see this in how my physical needs are met through others. As I verbally share my needs, I must work harder at being still–“listening” with my heart to respond–in hopes that God can somehow meet an unseen need in their life through me, just being me.

Salt and Light by Amy Grant and Wes King


We all need a little salt, need a little light

Need a hopeful word, shining bright–

We can be a little salt, be a little light

In this darkened world,

We can shine, oh oh, shine so bright

Shine, oh oh, just like the starlight,

Shine, oh oh, shine

Shine, oh oh, shine…the light.

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Filed under Adjusting to NF2, Funny Stories, Muffy, Uncategorized

Secret Codes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jeremiah 33:3


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

When I Paint

This year’s Art on the Lawn Festival could not have gone any better! I think it all started with the fact that even with all the summer happenings–family and friend visits, a trip to Colorado, a cataract surgery and recovery, a weekend in Michigan, more family and friend visits–I completed all my paintings and preparations in good timing! Not to say that the prior two years I necessarily procrastinated, but this year, I felt in control of the situation…but that came in part of the previous year’s trial and error tactics.

It’s special to reflect back on events and see growth of where you have been and where you are now. My first show, I literally had no clue what I was setting myself into, yet I challenged myself and some of my best paintings resulted from that year. I was very social, but more as a “represent” of The Children’s Tumor Foundation as a portion of my earnings would be donated for continued research. Starting off with a strong foot helped me know which areas that needed shifting and others that I wanted to see more of at the next show.

Last year’s show came all too quickly! My paintings had started to incorporate different medium items; I still challenged myself, but gone were the days of extreme detail sets. I had started to find my fit and style, and enjoyed working painting in ways that challenged me, but more in creativity rather than detail. When the day of the show came, we were better in readiness, as Dad’s well-planned system in hanging my paintings saved us much time and less hassle than the previous year. But I found myself more quiet; my sister did most of the talking and by the end of the day, I was tired of being,”the girl with a disease” story. As I was preparing for this year, that was the first adjustment–it just had to go.

“I’m not putting up any signs for The Children’s Tumor Foundation or anything,” I told Mom as we were finishing putting the price tags on the canvases. “I’ll just have my business cards laid out,” I concluded. Mom said that was fine, her reassurance that it was okay for this to be my day. Best decision I could have made for the day. There was no pressure to discuss my every problem with everyone–though there were some questions asked and I answered or if I didn’t understand, I had the help I needed from my parents and friends. (Not to mention, I probably was a bit obvious with my use of walker, especially trudging on the grass to the bathrooms!) 😉

It was a day of art–of friends and conversations; meeting new artists around my booth; and coming home, in complete exhaustion, with a thankful and happy heart.


Filed under Family Times, Funny Stories, Paintings, Uncategorized

At my Worst

“You know, this is blog worthy,” I say as I pause to catch my breath. Dad turns around and gives a little laugh. I had just made it down the three stairs from the top of the patio to the gravel; I just had to cross it to get to the grass and venture in darkness towards the flaming fire-pit where we were getting ready to roast marshmallows. If you have ever seen me walking grass, even in daylight, you understand how difficult this situation turns out to be–however, that night I had my Dad walking in front holding my walker to keep it steady and my Uncle was walking close behind me, for in the event I fell backwards.

I continue my mumbling, “Yep. Someone should be video-taping this and then post it on Youtube as one of those ‘inspiring’ stories that goes viral.” At this point I have to stop, because I am laughing at the thought of it and continue, “The headline would read, ‘Watch what happens when a girl, who can’t walk on grass in the dark, goes to sit with her family by the fire-pit.” It actually would be a boring video, because that’s all I did–just sit. Mom roasted three marshmallows for me and then I just enjoyed watching everyone else; can’t lip-read in the dark…and lip-reading all weekend was difficult as it was already otherwise.

Over the past two weekends, we have had two family reunions: the one in which my parents and I made the road trip to Michigan had been planned for months; the one this past weekend was a minor spontaneous overlapping of my Mom’s siblings. Lots of aunts and uncles and cousin times, too much food, games and tourist attractions, relaxation and all the different combinations of simple family pictures–both reunions have special memories–even if they were just short gatherings.

I get emotional when I know that I have to face family and friends, in which I have not seen in quite some time; pictures and blog posts are only a fragment of the physical me…real life is always the real picture. I have had a lot of these encounters this summer–before Colorado, before my friends came for the NF Walk, before the Michigan reunion, and when the other relatives came. It will probably happen before I see my doctors in a few weeks; I haven’t seen them since February…a lot has changed since then. I don’t know why this happens–it just does. The thoughts of how I used to be, and the knowledge of where my body is now…overwhelms and frustrates me at times. And I have to honestly say, right now, I am at my worst. And that didn’t faze my family at all–to them, it was just the real me. Just Mel.

Of course, I am not saying that they ignored it all–no, they were my helping hands and we even talked openly about different health issues. And like all my other encounters this summer, my family showed that where there is love…there is no fear. My thoughts of their initial reactions disappeared and were completely forgotten the moment the first “hello” and hugs were given. That’s what made the weekends so special.

Jesus sees me at my worst…even more than just the physical. He sees my thoughts and intentions, the words on my tongue before they’re spoken and my heart. He sees the real me. And He loves me despite it all. That’s not a fearful or overwhelming thought: it’s unfathamable.


Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

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


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

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.


Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

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.


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).


Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

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


Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

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.

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.

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



Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

Everything I Am Not

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

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


Juanita, Juanita…lovely, dear Juanit

From your head down to your feet,

There’s nothing half so sweet–

As Juanita, Juanita…lovely, dear Juanit.

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

There are pretty sunsets and birds upon the wing.

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

with Juanita, Juanita…she of beauty beyond compare.

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

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

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

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


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