Category Archives: Family Times

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.

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

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.