Category Archives: Adjusting to NF2

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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March 27, 2013 · 11:12 am

Goodbye, carbonated soft drink.

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This is me. College freshman at best. It was the year I embraced carbonated soft drink’s invitation to lunch everyday, often getting together again for dinner or a late night study in the Student Union. Pepsi became my friend; the terms tea or coffee were unheard of in our conversations.

Things started to change my sophomore year–I was not as dependent on my carbonated soda friend. I started making new acquaintances in the social world of caffeine. I spent my time rotating between the new friends, such as soy chai, and my old soda friend…who by now had changed its name to Coke.

As I stared to mature, I added a few more friends: iced and herbal teas. All these caffeine friendships demanding my attention. Some days I would ignore them all; other days I found it necessary to enjoy one or even two. Don’t get me wrong, I still find my best friend is water, but on the downside–it is a bit bland.

So why all this? Because my friendship with carbonated soft drinks has come to an official end. I spent Monday’s car ride home lamenting on good days past–good times, good tastes, good vibes.

At the end of September, I started seeing colored spots. If I looked at you directly, you would have been green or black depending on the other lighting in the surrouding area. At first, it came and went…by the first of October I realized that the problem was happening more frequent. By the time I mentioned the problem to my parents (in which we decided this was something more than just fatigue or dry eyes), the problem was constant. Doctors sent me to a neurooncologist who discovered that my optic nerves were swollen (and I did have extremely dry eyes!)

I do not have tumors on my optic nerves, but there was pressure on the nerves from other tumors in the brain that made the optic nerves swollen, resulting in the colored vision. The doctor started me on a medicine that would decrease the swelling and keep the nerves stable. There were to be no major health side affects from the medicine and I was assured that I could be on this medicine for life if needed without it causing problems that you sometimes see in other medicines after taking them for so long: I would not become immune to these pills.

But there was a sacrifice: the only side effect that affected me personally was that these pills had a bitter revenge on my soda friend–so much so, that it would make soda taste like metal. I tried to keep upbeat about the current loss, which I deemed temporary. I figured I would be off the pills in no time! I just needed to get my optic nerves unswollen! 🙂 But after the next doctors appointment, it seemed that this was going to be a long-term situation.

I did not really lament much over winter: warm teas and coffees were satisfactory. Then I started having salads for lunch and the thought came to mind: this would be so perfect with a Coke. And then it started: my cravings for my carbonated soda friend! I had already experienced the metalic tasting soda once before and because I remembered how I about spit out my Sprite a few days after I started the medicine–I took a full embrace for ice tea with my salads instead. More specifically Arizona tea in the can! (The kind you find a gas stations for 99 cents.) The plan was genius! It made me feel as if I was drinking Coke, but I was not.

Then this past weekend: my first blunder resulting from hurried decision-making and McDonald’s lack of lemonade the day I order a meal to go. “No lemonade!?” I say–feeling pressure from the line behind me. I could have said, “Ok, well I will take an iced tea,” or substituted it for a Shamrock shake. But no…before I have time to think of the words coming from my mouth, I blurt out, “I will take a Dr. Pepper then.” What!?! Don’t ask. I don’t know where it came from either. It took getting to the car to realize my mistake. I went ahead and tried it anyway.

First sip: “Yeah, that is not a Dr. Pepper taste.”

Second sip: “This burns my throat. Maybe if I try leaving some fries in my mouth, it will help the taste.”

Third sip: “Nope. This is gross!”

Fourth sip: “I sort of taste the Dr. Pepper right when it goes in my mouth. Maybe if I swallow fast!”

I get about three more sips in, then abandon all hopes of enjoying my drink. It was then I realized, it is over.

So, my dear carbonated soft drink friend, I bid you adieu. I will no longer be tempted by your advertisements or have cravings for you when I walk down the drink isles at the grocery store. And if I do, I will just remember what the writer of Ecclesiastes states, “For everything that happens in life—there is a season, a right time for everything under heaven (3:1).”

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March 26, 2013 · 6:47 pm

Needing a Guide.

Amidst the winter storm watch (and a nice load of snow), I went to Columbus to visit my sister and brother-in-law for the weekend. My sister had invited me to her work’s floral class where we made our own Easter/spring-like vase centerpieces.

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After we finished our bouquets, the rest of the time was for an experiment. My sister had never made this display piece before. With a room full of creative ladies–the event turned out to be a great social time of sharing ideas and learning more about flowers. I just tried to follow along as best I could. 🙂 The result: a bunny rabbit centerpiece! (The rabbit is white carnations…the tail carnation sprayed pink. Paper ears, but rose petals for the inner ear. And some sort of filler is sprayed black for the eyes/nose.)

0324131632 @ The Flowerman. Columbus, OH.

I probably could have made the bouquet centerpieces on my own–just due to floral experience [I worked three summers in high school at a flower shop]–but I don’t think that they would have turned out as beautiful as they did without the coaching help from my sister. I don’t remember flower names, so if I went to order flowers I would be at loss. I would not have thought of burlap, lace or raffia for the jar decorations, let alone using canning jars for the vase. Having the guidance from someone experienced made all the difference.

Guidance can come with just about anything: My parents helped guide me in making wise decisions as I grew up; I see it in my physical therapy sessions as my PT shows me stretches that help my body; my doctors guide me in helping me understand my MRI results and researching the best treatments or actions to follow; my pastors and Bible study leaders at church encourage and guide me to become more Christ-like.

For me, guidance is important. I think it goes with my personality…not a leader, so I lean on others when I make decisions. I am slowly learning to make the decisions on my own…building confidence and taking responsibility for my actions. And it is hard. Being a passive personality feels like sitting on the fence; like being afraid of the 50/50 chance of getting it wrong or being the only one doing it different.

In Mel Gibson’s movie, The Patriot, Benjamin Martin gives his new daughter-in-law the necklace that had once belonged to his late wife. As he puts the talisman of Polaris around her neck, Benjamin says, “It’s the North Star. That is the only star in the sky that never moves. It is constant, unwavering. A guide.” I wrote this quote down in my “favorite quotes” journal; to think that something in this ever-changing world is constant–a guide.

Then I think of my journey in life: ever-changing and wavering as if being blown by the wind. But I have a stronghold. God has given me his own constant guide: his Word:

Psalm 119:105, “Your word is a lamp to my feet and a light to my path.”

Psalm 46:10, “God is our refuge and strength; a very present help in trouble.”

Jeremiah 33:3, “Call to me and I will answer you, and will tell you great and hidden things that you have not known.”

I am never alone–in everything–God’s presence is here: “It is constant, unwavering. A guide.” ❤

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March 19, 2013 · 8:10 am

A new day!

I am not usually up this early. Not a “get up before the sun” sort of person, but today was different. I opened my curtains to a dark sea-blue sky. No clouds to distract the beauty. I sit on the end of my bed and start my physical therapy exercise routine. I started my sessions last week.

The goals set from a PT view is to strengthen my inner core muscles, while releasing some of the pressure in my back (upper, lower) and neck. I also added my own goal of working on my posture, as my shoulders bend in and I stick my neck out.

When I try to explain my stretches and goals, I always feel like an oxymoron: strengthening the muscles, yet relieving the pressure at the same time. How is that possible? They are such simple step exercises too. Repetition. And I think, “Why couldn’t I have thought of that on my own?”

As I finish my morning session, I begin to think about the day. How fresh it seems, and even though there are gray clouds in the sky, it is getting lighter outside. I think of Lamenations 3:22-24, “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I will hope in him.'”

I thought about yesterday…how dreary, dark, cold, rainy, Monday of a day it was. My physical body was feeling the weather…it affects my hands like someone who suffers from arthritis. I had a constant pain spasm in my big toe on my right foot and I could not seem to lift my shoulders in a good posture position. It is like carrying an invisible weight. I thought of how most mornings I get up and forget to thank God for another day. Another chance just to get myself out of bed on my own, even if my body feels otherwise.

Today I have no pain yet. I can’t guarantee this day will be without it, but it is a new day. The gray clouds are now overrun by the returning beauty of yellow hues and faded blue sky. The sun finally showed its face. It is as if the morning beckons, “Arise, shine, for your light has come, and the glory of the Lord has risen upon you.” Isaiah 60:1

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February 22, 2013 · 9:59 pm

Glass slippers

Cinderella has always been my favorite Disney Princess. Imagine a little Mel playing in her room (this is pre 3rd grade age) trying to tie my hair in the back like Cinderella; or wear an apron like Cinderella; or be graceful in my chores like Cinderella (laundry does NOT balance on the head). We had mice for a while. Yes…pet mice. I say “pet” because we named them…and although I never tried to talk to them or put clothes on them, we did play with them in our Barbie house. We tucked Porter (the male mouse) into bed in the Barbie house using a kleenex then got to playing and forgot about him. Thankfully, Porter had a little sputter (he was getting sick 😦 ) but that is the only way we ended up finding him.

Now a mature adult, I don’t play with mice and Barbie houses or try to balance laundry on my head; I don’t even use an apron in the kitchen. But after a day like yesterday, I asked myself: How did Cinderella keep her grace while running down the stairs and losing her shoe at the same time? Let alone they were glass slippers. I came up with the obvious conclusion: It is not humanly possible. 😀

cinderella-bluray-20  http://www.dvdizzy.com/images/c/cinderella-bluray-20.jpg

If you see me walk, one would note a few specifics: my right ankle curves dramatically inward when I step forward with my right foot; I wobble and sway in every direction; and when I turn corners, I usually end up meeting the wall first. Things as of late have been a bit more difficult, because without my left ear/hearing aid–my “regaining composure” sense is off. Meaning, when I walk my weak side is the right. My left leg and ankle take the weight of what the right is not doing. Most often this does not cause anything but if I go for long walks or exercise, I feel that weight immensely burden my left leg. But right now, that is not the case-more the balance is the problem. My left hearing aid is my strongest of the two. Going with no hearing aid in the left ear has caused more imbalance, especially when turning corners or walking in narrow hallways. But I still have seemed to pull off walking without falling completely. Which is huge!

I mention the curve in my right foot for a specific reason. I have observed that over the past year this problem is increasing…yet might have several factors involved. My shoe is the slip-on shoe. Doesn’t matter what color or style, but as long as it is flat and can go on my foot without using strings or velcro to stay–then I consider them “slip-ons.” Slip-ons for me are like finding a solid pair of jeans: you wear them until they are no longer “wearable.” That might be the first factor. Then you add the curving of the right foot–it starts over time to smash the back left section of my shoe, hence, losing my grip of the foot in the shoe when I take a step. That is also a factor. And just for the record, yesterday was a bit chilly…I probably should not have been wearing slip-ons but it completed my “going out to the coffee shop” outfit. So that is my final factor: my shoes must go with my outfit. LOL.

I was doing just fine in the early part of my errands before I went to the coffee shop. It was not until I was finding a parking solution that my right glass slipper became a problem. You got to admit–it seems that only on days like the one I will tell, is when the small town atmosphere seems awkward. Why? Because someone is bound to recognize you. At least in the city, I brush off these moments with the attitude, “Never going to see anyone here ever again anyway.”  Not so with small towns. Oh well, I suppose.

I found a spot on the street where there was a “No parking” in front of me and only one car behind me. Perfect! I hate parallel parking. So, I pull in and use the extra space in front of me to get up far so I can reverse and turn my wheels in closer to the curb. Getting out of the car, I realized that the hill is slanted so far to the right, I can hardly keep my door open and get out at the same time. There were no cars coming so I literally kick the door open and hold it with my left foot, grab my bag and get out of the car. As I make my way towards the coffee shop, I get to the barber’s and glance back. My parking was hardly on the line of the white box marks. I should have left it, but my OCD kicked in and I decide to go back and “recurve” my car in so I am closer to the curb.

Getting out this time, I had to be more quick as cars and semi trucks came flying down the hill. I get my left foot out, and my right. My bag is on the front seat just within reach and I was about to make a grab-and-go for it when my right foot landed on the ground. COLD ground! I look down to see that my foot came out but not my shoe. By this time, I can’t open the car door until the light changed and so there I stood. My right arm holding the door open (but it looks like my arm is being smashed); my right shoeless foot trying to hide behind my left leg and loads of cars are stuck at a red light–eyes watching me just stand there. A green light could not have come any slower!

I finally get myself together and walk past the barber shop again to notice several people looking at me from the window. “Just try not to trip.” I tell myself. Inside, I feel better. I am excited to get to a nice quiet corner, sip my soy chai and read. I enter the room that has a fireplace. My initial reaction is to just sit at the first table I see. Then I notice one is open by the fireplace. Genius! I make my way through the narrow passage of chairs to the empty table. Right as I pass a table where a girl is studying on her computer, I start to feel myself go unbalanced. Thankfully the chair with her backpack caught my almost fall and spill my chai everywhere disaster, but feeling even more embarrassed, I just say: “I am so sorry. I am so unbalanced today.”

I get to the table and sit. What a very ungraceful past twenty minutes! It was not until the car ride back home that I started finding humor in the story. I can’t imagine how I looked and I found that comical. Aristotle said, “The secret to humor is surprise.” I guess that gives my glass slipper moments of the day some grace; either that or I am still learning to give myself grace too, because ultimately, God reminds me of this grace through others–even strangers who are about to get soy chai spilled on their computer and still smile and say, “That’s ok.” That is grace.

I think even the Duke experienced his own form of grace. The first glass slipper is broken (thanks to the step-mother’s cane) and he already let Cinderella escape the castle the first time. Worried what the king would do, Cinderella offers a little grace: the other glass slipper.

Cinderella4 http://disney.wikia.com/wiki/The_Grand_Duke

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