April 29, 2013 · 11:59 pm

Life’s a Road Trip

Road trips. I love road trips. Usually I am the backseat driver, unless I am needed up front to drive (which is not very often) or to sit as co-pilot and make meaningful conversations to keep the driver alert. Because I had my nose in a good book last week, I opted to take the backseat. We left Thursday and spent the night a few hours down the road so by Friday we only had half the time left to get to NY.

We get to the hotel and I am laying out my things for the next day and start getting ready for bed. I take out my hearing aids and place them in their safety container; then I put my container in my purse so I do not forget them in the morning. (Can you imagine!?) Friday morning we grab drive-thru for breakfast and officially set off on our way only 9 minutes behind the schedule we had hoped for the day before (I was so proud!) Now, you have to understand…freeways, airplanes and the constant murmur in the background at the grocery store gets very annoying to hear. I usually have my hearing aids on the second setting on road trips when there is another person in the backseat with me so I can keep in conversation and I keep them at this setting when I am shopping. I just take them out in airplanes. Because it was just me in the back and I wanted to read, I left my hearing aids in their container.

We get about 40 minutes from my grandparent’s place (destination) and I am on the last page of my book. You also have to understand…I normally shy away from a few genres in literature: Sci-fi, romance novels and animal (pet) memoirs. But my latest trip to the public library had a shelf of books about animals and gardens–in theme with springtime, April and Earth Day. A few caught my eye, with this one in particular, because the owl on the front was so fuzzy and cute I just had to read it. It turned out to be a very educational read, but it was entertaining all at the same time. After two hundred and some odd pages, I am absorbed in the life of this biologist and her owl that I get to the last page and feel it coming! Yeah, the tears. Inevitable!

If you are like me and don’t normally read animal memoirs or watch the nature show, then hope you can sympathise with me on this for this very reason: tears. Not that crying is a bad thing–I think it shows how great the book is, because the author was able to relate that emotion to the reader. But when I read books that I know will make me cry, I usually like to be in my room. Alone. Yet here I am on a NY freeway trying to control my emotions that I really was not expecting until I started the last chapter. I finish the book and decide if I distract my thoughts from what I just finished reading then I would be fine. I mumble up to the front that I am getting a Charlie Horse cramp in my left leg and I need a rest stop. Up until this point I have somehow managed to keep the tears at least in my eyes, but as soon as my mom turns around to see what I need, one look and I burst out the ending of the story in one grand sentence and then sob profusely.

Mom and I finish our tiny chat about the book and I dry my tears. I figure it is time to put in my hearing aids. I first put in the right hearing aid but don’t hear the “ring tone” that announces to my ear that it is turning on. I put in the left (which is no longer my dominating ear but practically deaf ear) and can’t hear much of anything. I take them out and replace the batteries. Nothing. I know my left aid is working but I pass up my right aid to my mom to see if she can hear the ring. Nothing. Now I am no longer sad but a bit frustrated. What am I going to do? I just had to put them back in my case and back in my purse. “I will just have to lip-read today.” Sometimes my hearing aids just need a break and then the next day work again, and because I have had to turn them up to the highest setting most often as of late, I figure if I just try tomorrow then maybe they will work. The timing in this is not great. First, a whole weekend with my grandparents. How horrible would it be not to hear? And second, I just finished this book about barn owls and other birds who have such precise hearing that they can even hear spiders crawling up the wall. Surely adds to my frustration.

You may have guessed by now–but if not I will tell you: my hearing aid is currently still not working. I avoid the term broken, because it could be a numerous amount of factors that does not necessarily mean the hearing aid is broken but just needs a few adjustments, like new sensor pads or sometimes my ear wax will get inside the aid and cause it to not work. I am hoping it is not broken. But I did survive the weekend! Actually, I think I did quite well. I think right now I just want to have a pride moment and pat myself on the back. But I also give a lot of praise to my parents and even my grandpa who took time to sign little words (even make them up just on the spot so I would get the word at the moment) and lots of finger spelling. 🙂 Most of one dinner conversation consisted of the game “Guess the Word in ASL.” That was fun. And we toured a lighthouse on Saturday, so we looked up how to sign the word. All I knew was boat.

We finish the fabulous weekend and life goes on. I did not do anything different today than if I was wearing hearing aids. I had a meeting in the morning to discuss job potentials. The lady knew ASL, so there was no interpreter, but I think I talked and lip-read more than I signed. I notice without my hearing aids in, I am more verbal to say, “I am Deaf” and let people know why I am not understanding one word or accidentally interrupting a conversation or starting one way off subject. Deafness has blocked my hearing senses, but I noted to myself this weekend that my eyes are going to have to take more responsibility: more observation of my surroundings especially in social settings.

I did not think my life would ever come to this time…this moment when I had to face the reality of my deafness. But in a way, this weekend helped me more than it did frustrate me. I learned in part from my grandpa. He is a godly role model. His actions, faithfulness and servanthood shine louder than his words. He lives out the famous Mark Twain quote: “Kindness is a language which the deaf can hear and the blind can see.” He cares for my grandma everyday…even all hope seems lost. He is like Samwise Gamgee:

Frodo: I can’t do this, Sam.
Sam: I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there’s some good in this world, Mr. Frodo… and it’s worth fighting for.

~J.R.R. Tolkien, The Two Towers

We may not be fighting off Orcs or battling for Middle Earth, but I know even in Deafness that there is good in this world. My story does not end here. And when the new Day comes, it will be worth everything! I hold on to that hope: “[But] we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.” Romans 5;3-4

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April 25, 2013 · 3:22 pm

All around the world

DSCN1145Love the Earth

This morning I wrote a short document for my friend about how knowing others with NF2 has impacted my life. This circumferences the “knowing on a personal level” along with “knowing [having knowledge of] others with NF2.” While I did not take much time for argument in my case, I did propose that personally knowing others with NF2 has had a greater impact in my life.

However, there is this branch (like a sublet category) in the “knowing [knowledge of] others with NF2” that I had not contemplated until this morning. The thought came: I did not know there were others around the world who lived with the same disease. It was not until I started this blog last year that these facts surfaced. How did I go almost ten years not having any thoughts that there could be others around the world who are impacted in similar struggles/disease that I face every day? The thought just blew me away. I feel almost embarrased to be so honest to say that!

A fellow blogger wrote this morning, “Choose to look at something differently, and you could just get something extraordinary,” (Kelsey Reinhart.)* I am not implying that NF2 is extraordinary (just rare)…but when I look at the world–how big it feels–knowing that there are others with NF2 around the globe who live each day just like me, suddenly makes the world seem a bit smaller. I am no longer in my mind saying, “I am the only person in the world who faces these challenges.” Granted, every NF2 patient is affected differently by the tumors, treatments, surgeries and side effects, but we have a common understanding. And that makes facing the daily challenges in my life with NF2 a bit more of an extraordinary experience.

*http://kelseyreinhart.wordpress.com/2013/04/25/perception-is-everything/

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April 21, 2013 · 10:06 pm

“….Mary Poppins~ Practically Perfect in Every Way!”

Today my sister and I headed to the Schuster Performing Arts Center in Dayton to see the Broadway musical of Disney’s Mary Poppins. Even though I could not hear pretty much anything, I could pick up on a few of the songs (mostly based off context clues in the stage actions.) My favorite scene of the whole musical being, “Step in Time.” And seeing Mary Poppins fly off the stage in exit was a classic. Overall, the whole show was extremely well done from costumes to choreography! It was a fun-filled afternoon, which of course would not have been complete without our brilliance of attire–all provided from our very own closets.

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Have you seen the 1964 Disney classic, starring Julie Andrews and Dick Van Dyke? If so, what are your favorite parts or songs? 🙂

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April 18, 2013 · 8:34 pm

The Bigger Picture

You know today was different. It was great. I think Miss Stacey had something going there when she told Anne, “Tomorrow is always fresh, with no mistakes in it,” (Lucy Maud Montgmery.) I am pretty sure my day has had a few mistakes in it already, but it is fresh. It started so fresh and just seems to keep flowing with a good theme. Even now, it is a beautiful evening!

I am learning things in my daily readings, though they seem more like puzzle pieces at the time. I cannot see the whole picture yet, but start to get a faint glimpse of something..the bigger picture. I have several devotional books I am going through simultaneously. This morning they all related to each other…they all discussed forgiveness and kindness. They discussed unity. They all mentioned the passage from Ephesians 4:31-32,

Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tender-hearted, forgiving one another, as God in Christ forgave you.

I start getting ready for the day thinking mostly about kindness. Who can I show extra kindness to today? In my mind I envisioned an opportunity would somehow be presented during the day…an open door to extend kindness. Little did I realize that I would not be giving kindness, but receiving it.

I spent the day in the town of Yellow Springs. It is a great little town. Full of shops that sell mostly handmade items and lots of artwork!!! Different aspiring musicians will play on the street corners and my favorite part is that the public restrooms are located in the old renovated train station. 🙂 The town is adorned in bright colors, funky store names that you remember and at this time of year–loads of spring blossoms (which also means huge bees!)

My goal was going to a pizza parlor to discuss a possibility of displaying my paintings. I had missed my contact, so I just decided to eat there for lunch and read. The man who took my order was very kind. He explained and re-explained things when I could not understand. He showed me to the salad bar and caught my book as I clumsily dropped it while asking more questions out of curiosity about the pizzas and toppings. I found a booth and sat down. I noticed while I was reading/eating that the man who took my order was the only waiter there. He also took the orders up front for carry out and ran the cash register. Then I remembered only seeing one chef too. I had come in right when they opened at 11:30 a.m. By noon, they had a full house. These guys had every reason in the book to be grumpy if they wanted. But instead they were kind and full of energy, resulting in a positive mood throughout the room. I enjoyed my meal and after paying, thanked them on my way out. I don’t think they heard me as the line had piled up behind me at the register.

My friend came to Yellow Springs a bit later. We walked around, going into different shops and enjoying the nice day (windy, but nice!) We stopped in this store that had just about everything. It was almost set up like a half antique store/half Charming Charlie store. The merchandise was organized by colors and themes. Towards the back, we found the craft section. I found a few pieces of fabric for my paintings, so we headed back to the front to pay. I was a few dollars short in cash and there was a $10 minimum for swiping your card. I was just about to say something like, “Let me keep looking.” Or, “Let me look at the candy section.” (They had fudge!) I figured I could just get myself to the $10 limit and then use my card. (Note to self: carry cash next time.) The lady placed my few fabrics and post card in a bag and handed it to me. I took it and started open my mouth to say something about continuing shopping when she said, “It’s ok. Take it and have a great day!” It was genuine. She was not mad I did not have the cash. In fact, she was smiling. I questioned to be sure and she confirmed. All I could say was, “Wow. Thanks so much!” Then proceeded to the door where my friend was waiting outside and I told her about the kindness I had just received.

Aesop said, “No act of kindness, no matter how small, is ever wasted.” I experienced this today. When I observed the kind attitudes in the pizza parlor and experienced the gift of kindness in the craft shop, I think that I started to see the bigger picture from my “puzzle pieces” this morning. I should not go around expecting to give kindness. It should flow–it should just be part of me. It should be in my words, deeds, thoughts. I should not be expecting to receive kindness either. When I do receive it, it should be taken in with a heart of gratitude, thankfulness, praise. It leaves me humble.

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April 17, 2013 · 10:35 pm

Trying my take at the Blame Game

I just recopied off a page for my volunteer application…for the third time. Getting a bit annoyed, I am thinking–“Why can’t I just hold the pen and write legibly?” Even writing slow, my handwriting struggles. I could try to blame the lines; I am not one to buy a college ruled notebook. I prefer sticky-notes, letting my handwriting fill the whole square. I could try to blame the pen. But it is a Pilot pen…it writes so smoothly. I could try to blame my hands. Seems most probable, except that I would be blaming God for the condition of my hands. My cramping, curling, numb, weak, slow, shaky hands.

I saw a turtle crossing the road today on my drive home. No joke. I was just as shocked as you are! It did not seem in any hurry to get from one side to another either. Just a stroll across the lane! I tell my mom about the turtle when I get home. “Did it make it across okay?” Her first comment after my story. I said that I figured so…there were no cars in the left lane where it was slowly crossing. I know turtles don’t have thoughts like this–but what if they did? What if they sat down and wrote a blog about how slow they walked–how annoying or inconvenient it feels. Or would they share about how special they are–they may not be fast, but they have a hard shell where they can completely disappear on moments notice of harm. It was designed just for them.

I could sit here and play the blame game. But I ask myself, is it worth the effort? Or can I see uniqueness in these hands…the blessings that I can still use my hands even though they give me challenges continually during the day? It might take some hard thinking…but one blessing comes to mind: I can still paint. God designed that just for me…and I love sharing the blessings with you.

More to come…

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April 15, 2013 · 3:59 pm

Conversations

We sat at an oval table. There were seven of us having a conversation. It was a typical conversation: We had some laughs, times of serious stories, questions, personal reflections. We interrupted each other and the best part was you did not have to feel guilty about not bowing your head or closing your eyes during prayer. No one else was either. All was silent.  And yet, I understood almost every word.

Isn’t that exciting? I sat for an hour listening with my eyes, talking with my hands–American Sign Language! I have not had an experience like this since I took a summer ASL class in college. The Deaf community of the town got together every so often for dinners at local restaurants and they had invited me to go as well. That was one amazing dinner and conversation!! 🙂 Here, our group is much smaller and diverse: There are the two interpreters; a couple–the man, mildly hearing-impaired and the wife, hearing; a Deaf man; an occasional college student who is studying ASL; and me–profoundly deaf, but can still hear a small percentage. But we all sit together on Sunday mornings for the same reason: to hear the sermon.

Our interpreters came up with the idea of our group meeting after the first service to have a time of fellowship. I think it is a brilliant idea! Soon after we started, I discovered that I am in dire need to practice, practice, practice my signing! The group assured me in full support–“This is the best place to practice.” How true. Watching people talk with sign language is different from actual signing. I know most signs and can sign well enough to carry a conversation. But I doubt my memory of the signs and I literally cannot fingerspell. I used to be fluent–signs would just float in the air as I tried to sign as fast as I talk. But the college days are over. I re-entered the hearing world–outside of my classes, chapels, Deaf friend and interpreter–becoming dependent on it, forgetting my signs. Yesterday was my motivation reminder: “For the things we have to learn before we can do them, we learn by doing them.” ~Aristotle

I lip-read, even when talking with a Deaf person or an interpreter. I can see the signs, but the focus is lip-reading. Like taking a picture–focusing on something in the background, yet you can still see what is in front. Same goes for how I communicate. So when they don’t use the mouth function..I see how much it impacts the way I receive the information. (Not as good.) For myself, I still “hear.” Therefore, I associate lip-reading with sound. I live with a hearing family…so when I open my mouth to speak–instinct tells me to use my voice. How else am I to be heard? As we carried on our conversation yesterday, I made a mental note to self…remember the elementary rule of effective sign language communication: facial expressions! This is the tone…there is no need for voice. Facial expression is the voice of the conversation!

Now all that remains is to retrieve the dusting ASL books off my bookshelf and to dive in–looking up words, signing things I see during the day, getting a better right-hand movement in my fingerspelling. And I know the main reason in my not striving for this earlier at home–because it is embarrassing. The sound of that sentence is just ludicrous! It should not be, but it just is. I should think of it in terms such as going around the house, shouting the words at the top of my lungs…why is that any different from just a little sign? I am not certain. Maybe it is because we have never really signed much as a family, besides a few basic words and they can fingerspell. Maybe it just seems inconvenient to me…why sign to them when they can hear? I am not certain. But my family is taking the steps to try different signs to me…why not then sign to them or practice myself?

My sister signed/sang to me the “Happy birthday song” this year before I blew out my candle on the cake. At that moment, I thought it was so beautiful that I almost cried.

bday song in sign language

So today I added another motivation reminder: I love my family and desire to communicate better with them. Thus, I will strive to practice routinely. We are all in this together…even though I am the only one nearing Deafness.

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April 9, 2013 · 5:38 pm

Unorchestrated.

[Adj: Not orchestrated; unarranged or off the cuff]

I would venture to say that if I wrote this blog a few weeks ago then it would have had an entirely different perspective. I would have quoted to you lines from the Grinch: “Oh the noise, noise, noise, noise, noise. There’s one thing I hate, all the noise, noise, noise, noise!” Or my favorite Finding Nemo: “Mine. Mine. Mine. Mine.” The seagulls only ever quote one word the entire movie; must not have been difficult to learn their lines. Nigel, the pelican, is about to gulp down his breakfast. Annoyed at the seagulls, he turns and states in blunt authority: “Would you just shut up?”

When my hearing first started the extra editions of obnoxious noises and rhythmic patterns in my head, I had to force myself to find humor to keep myself from tears in most conversations. These two quotes above are most often what I thought. It was and is probably not very obvious to anyone (except to my family) that I am struggling to hear, most often past the extra noise. I put my emotions in the incognito, like the Penguins of Madagascar’s secret tunnel digging at the zoo: and I feel I hide the emotions well, until I can no longer conceal it.

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Communication. Hearing. Deafness. My thoughts seem to be consumed most often about these words, their meaning in my life and how to handle them. I first started hearing a high-pitched ring in my ears in the eighth grade. I grew to ignore it; it really did not distract me or play any significance to my communication even when wearing hearing aids. I don’t think I ever really thought much about the ringing, unless it was louder than usual–in event I had a headache or something. Fast forward ten years and things started to change soon after we returned from our spring break vacation. I noticed two different rings. They both had different pitches and instead of just a constant steady ring, they made patterns almost like a broken record. This is where my first annoyance started. And I thought of the Grinch. I thought of Nigel.

NF2 is a disease where you often feel complete isolation in dealing with the different side effects caused by the tumors; but what I should know or realize by now is that I am not alone. Maybe there are a few extremes, like my sweet-smelling aroma–which I still smell!!! But the ringing in the ears, also called tinnitus, is common among other people with NF2. However, before I knew this, I finally had the courage to ask my friend–who also has NF2–if she had ringing in her ears. In our discussion about the different noises we hear, we both described them in terms of musical instruments or notes–which I thought was fun. And then I realized it is yet another area in my journey with NF2 where suddenly I am no longer isolated…after all these years of thinking that I was the only one who heard excess noise in my head! Suddenly, my perspective started to diverge.

There is no “on” or “off” button; I will live with these noises my whole life. I walked in the kitchen last week and declared, “I am nearing Deafness; yet I will never sit in silence.” As many days as there are of complete frustration in trying to communicate, even just with my family, there are other days like today where I hear the noise but it is tolerable. Maybe it is because last night I sat out on the patio and waited for Muffy to finish his midnight snack. I thought to myself about all the noises and patterns in my head, simultaneously playing their rhythms. It sounds like a 5th grade band; it sounds unorchestrated.

Then I laughed at the thought: “I wonder if any of the famous composers ever felt this way?” Hearing all the noises of the orchestra in their heads while compiling their notes together to become one masterpiece. How did they do it? I thought of Beethoven. His deafness never stopped him from becoming a world-famous composer. I can’t destroy pianos like he did, but in waking up this morning, I realized that the piano is one sound and melody in my head that I hear. The tinnitus is changing; last week it was the sounds of trumpets, electric guitars, an accordion, and clarinets (which were most annoying–sounded like someone was just blowing air in the horn and wiggling their fingers back and forth between two notes.) This week, I still hear the clarinets (though not as loud) and the accordian…but today I hear a regular piano. It has been like listening to a “rest and relax” cd you find at stores even though it sounds more like a child just sitting down and playing random keys up and down the piano. But it is a piano. It is almost refreshing.

Who knows–maybe tomorrow it will not be so refreshing; maybe I will hear something new or maybe not. These past few weeks have taught me about embracing change once again. So today I concluded that even though this may not be the “music” I am accustomed to hearing, it is music and I can praise God for the noise–even the clarinets.

Praise Him with the blast of trumpets high into the heavens,
and praise Him with harps and lyres
and the rhythm of the tambourines skillfully played by those who love and fear the Eternal.
Praise Him with singing and dancing;
praise Him with flutes and strings of all kinds!

Praise Him with crashing cymbals,
loud clashing cymbals!
No one should be left out;
Let every man and every beast—
every creature that has the breath of the Lord—praise the Eternal!
Praise the Eternal!

Psalm 150:3-6 (The Voice Translation)

References:

Dr. Suess. How the Grinch Stole Christmas. Random House, 1957.

Finding Nemo. Disney Pixar. 2003.

*Image taken from http://www.religiousforums.com/forum/attachments/religious-debates/981d1171060978-great-news-hope-our-future-just-20smile-20and-20wave-20boys.jpg.

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April 8, 2013 · 11:58 pm

Book review: The Vow

I’ve never done a book review before, only book reports or research papers–but never an official “review” per say. Though I have mentioned book summaries on here before, such as Kathy Van Riper’s A Race Worth Running, I am not sure of what a book review entitles. Which is a pity, only because I never give reviews on Goodreads or other websites like Barnes and Nobles about what books I just completed or struggled through; how spectacular (or not so spectacular) a certain read is. Of course, it is all humble opinion. You have heard the saying, “Don’t judge a book by its cover.” I like to add, “Or its title; or its book review.” 🙂

Over this weekend, I had the chance to read The Vow by Kim and Krickett Carpenter. For all the books I have on my list of “to-read” or “currently reading,” this has never been one. In fact, I had never even heard of the Carpenter’s story, until the movie based on the true events hit theatres last year. Completely forgetting about it, I get a text from my friend a few months ago who asked me if I had read the book. “Is that a Nicholas Sparks book?”, I text back. Shame, I know–but the title just sounded like something that he could have penned. She responded back and told me a brief synopsis of the book and then brought up the movie. “Oh, I know which one you are talking about!” Like a lightbulb came on. She was just finishing the book and sent me her copy to read for myself. And I am glad I did!

The Carpenter’s story of life, faith through every circumstance and love challenged me from the moment I started the first chapter. As I moved from the opening chapter titled “Boy Meets Girl”–a fun, heart warming reminder of the early 1990’s dating scene: late night phone calls using a land-line phone resulting in huge monthly phone bills, handwritten letters and commuting back and forth to see each other (in the Carpenter’s case, they had a long distance relationship)–I found myself in tears as I started the next. In no way could I imagine the pain endured of what happened two months after their wedding.

Kim and Krickett had just come off a “mountain top” experience: within eight weeks of meeting, they were in love and planning a wedding. Starting life together, they did not imagine that a fatal car accident would leave Krickett with serious head injuries and in a coma for weeks. She suffered short-term memory loss of everything that they just had lived a few months prior. She did not–and to this day–ever regained memory of meeting Kim, dating him, or getting married to him.

As I continued reading, I was greatly encouraged by the Carpenter’s faith. The book is written mostly from Kim’s point of view and I completely appreciate his honesty about his faith during those trials. Krickett’s faith–even though she suffered brain damage, memory loss, loss of all other function/skills…went through extensive physical, occupational, and speech rehabilitation–still talked about her faith like a solid rock. Personally, I related to the kind of faith Kim endured during those months–trying to do it on my own, forgetting that God holds the bigger picture and cares deeply about every detail in our lives. He promises never to leave us…but that is so easy to forget during the darkest hours.

Doctors did not expect Krickett to make it to the hospital alive, seeing as she had been trapped in the car for more than a half hour, unconscious and bleeding. Doctors did not expect Krickett to make it on the hour flight-for-life helicopter ride from Gallup, NM to Albuquerque. They did not expect her to live through the first full day; the first week; make it to rehabilitation; recover in physical aspects as well as she did (of course, she had been an All-American gymnast in college.) After seven months since the accident, Krickett and Kim found themselves against the odds and literally starting a new life together. After seeking help, the Carpenter’s started to date again, even though they were married. Krickett needed the new memories as the old wasn’t to be found. After a season of “re-falling in love,” they had a renew of vows ceremony. The rest goes from there.

In the last chapter, Kim writes,

Although Krickett has never gained any memory of meeting, dating. or marrying me (the first time), our life today could not be greater. After all we have been through enduring the trials and tribulations that have confronted us, we know that there will be more to come. That’s just how life works. But we have a great sense of appreciation and thankfulness for what God has given us. We have been truly blessed. (175)

As I neared the end of the book, I thought to myself, “I am not even married and this shows what true love and seeking God with our whole lives is about.” Then I thought how I can tend to focus on the past, but there is no need for that…instead seeking to live out for today to the best of my ability. Of course, it will be a habit I need to work on. Like today, Mom and I went to swing at the park. I told her in the car how I used to walk everyday after class at CCU to the local park and swing for a half hour or so, then walk back. Then I added, “I can’t do that anymore.” Then I went on to say how my body is not the same as it was last year around this time, or even from Thanksgiving, to just a month ago. I do not think of my body being on a downward spiral, but when I look at the bigger picture…most often that is what I see–until I remember (or am humbly reminded) of all that I have been blessed with even in the darkest hours.

“But he knows the way that I take; when he has tried me, I shall come out as gold.”

Job 23:10

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April 4, 2013 · 11:03 pm

A Day Like Today

Today ended up being my last session of Physical Therapy. I was not anticipating this at all since I was scheduled two more sessions next week. I feel as if I “graduated,” and now I get to go forth and onward in life taking the new stretches and exercises I learned and hope to maintain what I have started to build in terms of healthier muscles. I think my eight sessions of PT also caused me to be more aware of the little daily tasks in life that I have come to see cause neck pain or bad posture.

For example, I don’t wear much make-up; but after starting PT, I noticed that bending over the counter to apply my eye liner, shadow, and mascara caused pain to appear in my neck from the position of bending in and straining forward to be close to the mirror. I ventured to Target one afternoon and found myself a nice square mirror with a handle on the top and brought it home. I already have an over-the-door hook for my bathrobe, so I moved my robe to a different hook and placed my mirror over the door instead. Brilliant. Best five dollars spent in the month of March! One side note though, the hook is not that low, so when I apply my eye make-up…my nose is what I first see in the mirror. Good thing it is not any higher or I would need a stepping stool!

Since this morning brought unexpected good news, I–in excitement–decided to celebrate in the best way possible. I grabbed Taco Bell for lunch then headed to Wal Mart to buy an exercise mat so my twice-a-day PT routines can be more enjoyable rather than just the hard floor. I wish I had a mat down the other morning as I took a “trust fall” to the ground.

“Trust fall.” I am sure you have heard of the term. It was the part of church camp obstacle courses I did not like. It was not in part of trusting the person behind me…it was trusting myself just to fly backwards. I just never could with grace or ease until Tuesday morning as I tripped over my own feet and pajama bottoms as I got out of bed. It sent me flying backwards, trust fall fashion, until my head snapped off the ground and I just lay flat. Not the best way to start your day, but all I suffered was a minor headache during the day.

Until yesterday. I woke up thinking to myself, “I have the worst swollen glands!” It took a few morning hours at the coffee shop to realize that it was not swollen glands. My entire bottom neck by my collar-bone just throbbed; I finally figured that it was major whiplash from my fall–it is more like a pulled muscle. I was fine during the day for the most part; but towards the early afternoon and evening, the bad posture and sticking out my neck due to the throbbing front portion of my neck caused the intense pain to start in the back of my neck. Of course, I could have done a bit more relaxing during the day, but I had this drive to organize my file box. After a few loads of paper trash, three times emptying my shredder and frequent “lay down on the bed to give my neck some relief” times–my file box had a complete make-over. It felt grand.

I got in bed for the night and placed my heating pack on my neck. I started to think of what to say to my PTA about my Tuesday’s fall; I already had to tell her two weeks ago about another fall I took on the wood floor in the hallway–note to self: Mel wears shoes in the house at all times…not sock feet!! Or just now, I go in my room and miss the light switch, take a step forward in the dark and fall into my closet–note to self: Mel leaves a small lamp on in her room once it gets dark outside. PT has trained my mind to become more aware of these problems; it is just that I do not think of these problems or solutions until they occur. 😉

Anyway, it did not take me long to fall asleep last night and before you know it, I was up an hour before my alarm was set to go off. I decided to use the extra time to read. I love morning readings. My mind seems so open, though my left eye would not stop twitching today. I am currently reading David Crowder’s book, Praise Habits: Finding God in Sunsets and Sushi. This morning I was reading his chapter on Psalm 8, in which he rewrites the Psalm in his own words in form of worship. This paragraph seemed to gratify my thoughts:

I look up at your macro-skies, dark and enormous,

your handmade sky-jewelry,

Moon and stars mounted in their settings.

Then I look at my micro-self and wonder,

Why do you bother with us?

Why take a second look our way?*

I fell asleep last night after a day of what I consider macroscopic pain! I woke up this morning with only the usual morning stiffness that went away after I started moving around and getting breakfast. Yesterday I did not do any of my PT exercises or stretches; today I did them all (minus a few neck routines.) I went all day with no pain like yesterday.

I feel microscopic; I examine my thoughts and stand in wonder (awe) that God would heal this pain so quickly–that today was not a day of pain, but of celebration and fellowship. It leaves me singing as the Psalmist, “O Lord, our Lord, how majestic is your name in all the earth!” (8:1)

*Crowder, David. Praise Habits: Finding God in Sunsets and Sushi. Colorado Springs, CO: NavPress, 2004. Pg. 49.

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April 3, 2013 · 12:45 pm

Honest thoughts.

Praise Him for the unexpected and the unlikely, for the daily and the difficult. The more you count, the more gifts you will see.

~Ann Voskamp, One Thousand Gifts.

My initial blog intentions for today’s post was to write a “follow-up” from my last post about painting. I was going to write why I love painting versus writing with a pen or even typing…leading into the new struggles with my physical conditions in my hands. I have a few blog posts that I have been putting off for a few weeks now, because I was a bit upset by a comment I received about my blog posts. In a way, the comment made me think of my writings…as a form of “checks and balances” to see if what they were saying about my blog were true; but it left me with more wounded thoughts than anything else. I don’t even think it wounded my pride. It just hurt.

There are times when writing a blog about your physical conditons is emotionally difficult. Ok, maybe not–“at times”–it is hard to write about my physical conditions. I desire to be honest about what I experience and try to relate to the readers the best I can what I live with everyday. I cannot write all details or even describe fully how my days are filled, because some are just inappropriate to write about for a blog and others are just unexplainable. I even have a hard time describing different pains to my doctors. I have to get creative–if you will–to describe something. Like this new obnoxious ringing in my ears. I finally started describing to my family what the different simutaniously ringing noises sounded like by describing them in terms of instruments and rhythms. Then the annoyance seemed more light-hearted and I laughed at a few that I described.

So this morning as I started to think of how to start writing these posts of “updates” on my physical health, my thoughts took a turn when I read Ann Voskamp’s quote; then I finished reading my friend’s non-profit blog about their trip to Rio, the work they did there and the people they grew to love; then I read a bit of updates on what Bethany Hamilton is doing in Morocco and that Nick Vujicic has a new devotional book out (his first book, Life without Limits, is an inspiring read; I recommend it!) I started to think about my looming blog entry I had not even started yet and decided, “Today I am not going to write about my physical conditons…my limitations. Today I am going to count my blessings.”

I think it is easier to count your trials more than your blessings. Indeed, our trials can be our blessings should we choose to persevere through them. I still desire to write about my life with NF2. Afterall, it is the biggest aspect of my life in every way. As I ate lunch with my dad on Friday, I said, “My life would be boring without it.” I try not to focus on the negative aspects, but I am human and in all honesty…there are days when persevering takes all the effort of my energy. There are some days that I do not feel like counting my blessings and just mope around the house. But today is not that day. As I finish my Matcha Madness Green tea and step out from my favorite coffee shop back into the daily routines in life, I am a humbled. God continues to show me that yes, I go through rare physical conditons that leave me with accumulating limitations, but He is greater than my limitations. He shows me through others who have persevered through their own physical limitations that God can still use me right where I am. And for that, I truly can count my blessings.

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