Category Archives: Family Times

Facial Expressions

The other evening, Dad took me out for a dinner and dessert date at the local Stoney Creek Roasters in town. I was expecting a full house of students studying, but it was seemingly a quieter evening, until we started leaving at the end. I should have thought “college time”–studying in a coffee shop that is open until midnight starts around 8 p.m. Oh the days those were, such memories! 🙂

Anyway, when we got inside there was a few people in the order line, so Dad and I went into the ice cream room to see what flavors they had and get a head start in decision of what we would want for dessert. It didn’t take me long…I chose Sticky Bun. It just sounded good. We got back in the main line and since they didn’t have the potato soup that night, I had to read the menu. Understand, even now, my computer screen is zoom on 200%, so that I can type and see my errors without squinting. The menu wasn’t bad…it had dark bold letters, but when reading anything not on a screen, the hard part is finding the focus point–where the two eyes meet and see clear.  Once I have it, I must hold it or I start the process all over again. Such was the case in the menu, and I guess it might have also looked a bit strange that I held the sheet right at my nose. I could read turkey and ham, but the sandwich options otherwise were hard to distinguish. I did read “sauerkraut” and quickly skipped that line and just settled for a the turkey, bacon with some sort of dill cream spread.

Dad and I had a good time. We didn’t turn many discussion topics, because the ones we did discuss, half the time Dad was finger-spelling and I was playing Crosswords in my head putting the words together and getting the story down. Dad was very patient. It did cause for some good laughs too. Dad went to get our ice cream while I finished my sandwich. I was pretty proud that my first half had survived mass chaos–bread is my downfall in eating. It doesn’t matter if it is a bun, breadstick, tortilla, toast, sandwich–it is all the same–not only do my hands have a hard time holding in a proper grip, but I also can’t just bite down…I have to wiggle my teeth to get the bite, which causes the bread to move and the grip to fail and you get the picture. I’m a messy eater when it comes to bread.

I am ungracefully finishing my delicious second half when I notice college students have started to surround the room. There was a guy seated two tables over who looked to be in serious thought as he took a sip from his large coffee cup and looked around the room. Dad wasn’t back yet and I suddenly felt embarrassed. My napkin had been very well used, but on my last few bites, the dill spread had oozed out all over my right hand. I always have bad timing in social aspects and don’t purposefully try to appear as an ungraceful eater, but the moment I am licking my fingers is the moment I noted the college boy sweeping gaze around the room and I know he saw me. I quickly grab my napkin that isn’t helping much and gain my composure…then it dawns on me…without glasses, I can’t see people’s facial expressions unless they are right in front of me. I smiled and sort of wanted to clap my hands in delight, because for once, it didn’t matter if he saw me licking my fingers and gave a look of shock or disgust or amusement or maybe nothing at all; but for me, it was a changing thought.

I won’t lie–even though I can hardy see details of me in the mirror, I still struggle with being self- conscience–shifting more to the effects of my disability state when in public places. But why should that matter…why should I be so self-conscience of what others “see” when they do not see the whole picture. Even I can’t. And because I have no control over my physical state, why should I consume my mind with thoughts of how to control it otherwise? It’s extraness. I need to remember what is truly important, what truly matters.

What am I gonna be when I grow up?
How am I gonna make my mark in history?
And what are they gonna write about me when I’m gone?
These are the questions that shape the way I think about what matters

But I have no guarantee of my next heartbeat
And my world’s too big to make a name for myself
And what if no one wants to read about me when I’m gone?
Seems to me that right now’s the only moment that matters

You know the number of my days
So come paint Your pictures on the canvas in my head
And come write Your wisdom on my heart
And teach me the power of a moment

*Taken from song, “Power of a Moment.” Chris Rice. Past the Edges.


Filed under Adjusting to NF2, Family Times, Uncategorized

Plum or Pumpkin?

It was my first outing since eye surgery. Just an afternoon with Mom and Marcia looking in different stores for items on our lists of needs, ending with Target, which is where all my shopping took place. I usually grab a basket, place it on top of my walker and push it like a cart. But I needed grocery items this trip a well, so after getting me a regular cart, Mom just took my walker back to the car. All set with my list, I headed towards the pharmacy and food section feeling pretty confident. Shopping would be fast, because without glasses, I have no reason to stand and contemplate on all my options; I had what I wanted in mind and figured I should just stick to that until I could see better.

All excited, I come to the produce section. As I pass by a refrigerated section on my way to get fresh veggies, I notice there is coffee creamier in the case; not in its usual section, I scoot my cart back over for a glance. It’s the seasonal selection! Intrigued, I stopped to contemplate. They had Peppermint Mocha–too early, I save it for after Thanksgiving. There were three others: Pumpkin Butter, Pumpkin Spice and one that I read as Plum Cake. Between the two pumpkin flavors, I decided Pumpkin Butter sounded too sweet, so I grabbed the other. Finding Plum Cake an interesting flavor, I added it my cart, along with a regular Sweet Cream for when we use flavored coffee beans.

I finish my list efficiently, considering my eye was still only fluttering half-open most of the time and when I finished the food section, I make my way back towards the front. I only needed a new trash can for my bathroom, and to my surprise,, managed to meet Mom on the isle leading to that section. “Find everything?” she asks. I comment the need for the trash can, then excitedly tell her of my creamier findings: “Look at this flavor! Plum cake!”  Glancing at where I am pointing, Mom gives a sympathetic smile and reports, “Oh. It’s Rum Cake.” Bummer. I bought it anyway. 🙂 Thinking now, Plum Cake creamier would probably be disgusting. Besides, according to Mother Goose, Little Jack Horner sat in a corner eating a plum pie–not plum cake. So much for contemplating.

. . .

Yesterday, I painted. I painted a pumpkin since my hands cannot carve a pumpkin. It was a very interesting experience and gave me an appreciation for those who spend quality time painting their dried gourds. I can’t say I have the desire to paint any more veggies, but it was new and different. And looks like a plum.



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Filed under Family Times, Paintings, Uncategorized

Hello, my name is…

I’m horrible at introductions. People say their names and, most often, by the time I say, “I’m Mel. It’s nice to meet you,” I have entirely forgotten their name or never fully understood it in the first place. Introductions would be a way for me to practice assertiveness in just simply asking for clarification or repeating of the name. But I never do, unless my family is present with me, in which one comes to my rescue and will finger spell and lip-read until I get the name and/or pronunciation correct. Even after all this, I still stumble to remember. Names.

Names are special–even nicknames. “Mel” was never even mentioned while growing up. My high school friends called me “Minda” and Dad has always loved his for me–“Minder.” 🙂 It wasn’t until my freshman year at CCU that Mel came to existence. I think it started as a mix of decorating our dorm room, “Cal and Mel’s Room,” along with the street church kids. Our leader had an abbreviated name as well and the kids just took Mel and that is who they came to call me. Between friends, roommates and street church–Mel fit. I liked Mel. I think my full name–Melinda–is a beautiful name, but for me, Mel fits. 🙂

It was also in college that I came to use sign language and interpreters for hearing needs in the classroom. My sophomore year, a deaf man transferred to finish his degree and we had one class together that Spring. As I got to know him over the next year, he gave me my signing name. In the Deaf culture, one must be deaf to give another a signing name (unless you are going into interpreting or such.) I am not sure why this is,but I remember my ASL teacher, who was born deaf, telling us about different deaf culture things. Another one that I found funny, but now that I am deaf myself, can see how it makes sense: if two deaf people are talking or even just a deaf person signing to another hearing person, it is considered rude for a third person passing through to duck or lip an, “excuse me,” because it is actually more of a distraction to the conversation than if the person just quickly passes. A complete opposite of the hearing world conversation.

Conversations, like names, can get confusing when watching me. Because I was born hearing and didn’t go fully deaf until this year, my speech–though soft–is good. I do struggle with different pronunciation aspects, but then again, like a history of falling, I have a history of funny word mishaps and pronunciations even before I got declining hearing. Contrast, my deaf friend at CCU was born deaf and taught himself to speak; he too had a soft voice, but his pronunciation of words was remarkable! Unless I am using an interpreter, I lip-read; as I mentioned, my hands and sign language don’t agree anymore, especially in finger spelling…which is probably why I dread introductions with interpreters, because it is proper to first finger spell your name and then show your signing name. So much for manners–I skip the finger spelling completely and just show my signing name. 🙂

Before we graduated, my friend gave me my signing name. It is an “M” brushed by the side of the cheek, starting close to the mouth. He said he chose this, because of my smile. I think it is a very special signing name and even though I have now lost contact with him since moving here, I think of him when I use my name. I have been thinking about signing names for many months now, because I have the honor of giving my family signing names…which will also cut the finger spelling time and questions in conversations if I need clarification of the name. I want, like my signing name, the signs to be special. My problem is that there are 4 “M’s” in the midst of being creative, but I haven’t stopped in search of their names yet.

So long as the memory of certain beloved friends lives in my heart, I shall say that life is good.

~Helen Keller




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Filed under Adjusting to NF2, Family Times, Uncategorized

Novelties not Written

Much like my right eye,  I depend greatly on my right hand–because I am a natural right-handed person. It wasn’t until this February that the numbness started to rapidly increase, causing my fingers to curl inward like the left hand. There were several factors in my decision to stop driving at the end of March, and the right hand was one of them. Weakness has been a problem more in the left hand, but now, I often feel that even though my left hand is the weaker hand, the grip is better than the right just because the numbness is not as heavy. It gets confusing. Another mind game.

Compared to the rest of the present happenings of the body, I don’t talk much to anyone about my hands past the typical comments that they’re cold or my bad (really declined) penmanship, finger-poking computer times or asking for help opening things. Others are just obvious and a bit embarrassing, especially when it comes to eating…sometime even just around my family. I’ll comment how I miss taking a notebook and pen outside and just write,, but I don’t say much how I often miss just pampering myself…putting my hair in a ponytail or up fancy with cute bobby-pins, adding a little make-up and wear my Promise ring. I don’t like to comment how much I feel like a kid when I can’t buckle my seatbelt or punch my PIN number at the store; how frustrating it is not to be able to hold my books or almost drop my shower head while rinsing my hair or how long it takes to get dressed some mornings or hardly being able to set my alarm or punch the buttons on the microwave. And now that we are incorporating more sign language in the family, my hands struggle…the signs barely visible, if any at all.

Things, things, things…everyday. I usually just adapt–because I have to–and just don’t say these things. I think I let it build this past week, silently, after all the PT/OT and other personals gave me the “strength tests”: Squeeze my fingers, don’t let me push your arms down, and such. My doctors at Children’s do the same, but they always end withe the same question: “Can you still hold a paintbrush?” As if nothing else I wish I could still do is essentially important, because they know my paintings…they know my story and how painting brings me joy as I share it with others. I may have the penmanship of a seven year old and finger-poke in typing, but I can hold a paintbrush. There is almost a sense of freedom and I forget my woes of hands, if only for a moment. My stubborn and numb and curly and weak hand.

Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.

Isaiah 41:10



Filed under Adjusting to NF2, Family Times, Paintings, Uncategorized


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

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

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

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

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

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

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

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

Exodus 3:13-14

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


Filed under Books and Movies, Family Times, Uncategorized

Privacy, Patience, Public Restrooms

Don’t worry, this post is still G-rated, but the more I thought about how to go about this, the more I wanted to give you a better understanding of what a day in the life of Mel can present. Not that I am special; I just require a new format of special needs in certain areas of daily life.

I’ve talked about things before, especially during last Fall’s sessions of Occupational Therapy. A few: I have fancy big pens I use for “writing,” special handles on my silverware, plastic tableware to eat from rather than heavy plates and bowls, reusable straws to help when I drink, a shower chair and Dad attached a new, secure handle for me when I get in and out of the shower.

Out of all the additions, there is one–probably most significant–that I neglected in thankfulness and took for granted. Until I could not physically function on my own. Truly, if it were not this past weekend’s experience, I would still be living in the same denial of this helping hand: raised handles on my toilet seat.

It’s like anywhere else I sit–the couch, kitchen table or ca seat, I cannot physically stand without the use of my upper body and arms pushing against something. My legs and ankles are on the down-slide, but the fact I still get out of bed on my own each day is a miracle in itself.

So this past weekend, I find myself in a predicament: the toilet is too low to the floor and is next to the bathtub, unlike most others where it is near a wall or the sink/counter. The tub is about the same height at the toilet…too low to push from and my walker handles are too high. I am stuck. Humiliating and humbling, every time that I used the restroom, either my Mom or sister had to help me stand.

You know, I’ve been to Greece. At Phillipi, most of the ruins were still in good form: doors, stairs and walls of the First-century era. The main city entry and stone are original, making it slippery. We saw the amphitheater, the gladiator entries, and the hole in the ground that they termed as a prison. And we saw the public restrooms–


We’ve come a long way from this picture–much to be thankful for in privacy and patience. But this is what my life with NF2 is becoming: a special need that could one day require more assistance apart from my family’s helping hands. For now, there are no words I can express to my family for their sacrifices in those needs; and there are no words I can express to God for providing in those needs. It is learning humbleness, that I see the Love of God shine in others…and it’s contagious.


Filed under Adjusting to NF2, Family Times, Uncategorized

Secret Codes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jeremiah 33:3


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

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

I’m Confused

If you and I were sitting at a table, just talking about life and letting conversation flow, I would hope like any other normal conversation, there would be transition sentences to help me follow the train of thoughts of topics at hand. Maybe there is too much of a writer’s dream in that thought. But maybe that is my problem–I read too deeply into things; and my lip-reading often leaves my decoding of transitional phrases not what the transition is even off sometime that my Dad signed to me (after patiently trying to help me understand), ” I’m changing the subject.”

“So, we’re not talking about writing letters anymore?”


Such clarity, simple change. After yesterday…I could have used a little clarity, because what I have been living with over the past two or so months is anything but simple change. My Life with NF2 is appropriately labeled more as, My Life is so Confused.

As you know, my summer started with the increasing cataract hazy blur. Add the grey veil in the right eye, correction surgery on the left eye, endless eye drops, full and well recovery for the left eye while the right eye worsens…it has reached a point where I feel more blind with my glasses on than off; and I am already as blind as a bat anyway. Except even bats are better in knowing their surroundings–they see as a result of high pitch sound waves and the echo replies. High pitch frequencies were the first part of my hearing to diminish. So, me: no hearing (which really is not all that unbearable)–but it only becomes totally unbearable when you cannot see or when you see double, all in which is now me.

I would venture to say that 98% of this perpetual blindness is the current swollen right optic nerve. My MRI is on Monday, ophthalmologist appointment on Wednesday and Children’s Hospital on Thursday; next week is going to be a long week. But I have questions and ready for more answers, regardless of what the scans show. When I have my glasses off, my left eye does the controlling, though I try to refrain from zoning my right eye out entirely and keep it functioning straight ahead. Most often though, when I lip-read, write or even type…my right eye acts like a lazy eye. It is becoming a bad habit.

In preparing for the art show, I even painted in this fashion:  one eye and one hand. No glasses.




When we were setting the dates for my eye appointments in May, I specifically selected at the time (for what I understood) as my last appointment, post-surgery to be after the Art on the Lawn Festival. Summer in all fullness and yet eyes worsening, I was not only counting to the art show, but to yesterday where I had the understanding from earlier on  that I would be tested in the left eye for the new glasses lens to match my new eye lens they placed at surgery. I felt that would solve some of the bur problem when needing my glasses on…I can’t go everywhere without them; Although I do most often when at home, once even going down the stairs as it made the dizzy blur decrease.

These little but big changes–I was in anticipation! Instead, I left the clinic..with a dilated left eye and grey veil in the other…in my now confused mind, I had wasted a day just waiting (literally, almost five hours)–for nothing. I was so frustrated, angry, confused, not to mention hungry, and crying so hard, Mom pulled over on the highway to give me some clarity. I still don’t understand why my surgeon wants me to wait another 2-3 months, have another check and then get my new prescription if the eye is good even now. I don’t think I will make it that long! I am still confused.

But I am also wondering what next week will hold. And I often want to ask God for clarity in this mass of confusion I call a body. Not really a prayer, not really a demand…a simple question: What are you doing? And it’s a question that only faith can clarify.


















Filed under Adjusting to NF2, Family Times, Hospital Trips

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