Category Archives: Adjusting to NF2

September 8, 2013 · 11:48 pm

Leaving room for “God Room”

In the Gospel of Mark, chapter 2, Jesus is continuing his ministry of teaching the people and performing miracles. At Capernaum, Jesus was at a house where the crowds of people came in at so much abundance that there was no room to get into the house, let alone by the door.

There were four friends who had a lame friend. Because they could not get through the main entrance, these four friends carried the lame friend to the roof, made a hole in the roof, and lowered their friend right to the feet of Jesus. Seeing their faith, Jesus healed this man both spiritually and physically:

Which is easier to say to the sick man, ‘Your sins are forgiven,’ or to say, ‘Get up, take your bed, and start to walk?’ I am doing this so you may know the Son of Man has power on earth to forgive sins.” He said to the sick man who could not move his body, “I say to you, ‘Get up. Take your bed and go to your home.’” At once the sick man got up and took his bed and went away.

Mark 2:9-12a, NLT

Today, childhood friends from my hometown, sister and brother-in-law, and friends from college days walked the Children’s Tumor Foundation NF Walk in Denver, Colorado. Their walking as a team and raising support on my behalf for the foundation and its future research made me think of the four friends of the lame man. They walked with the same hope as any persons living with a disease: that someday there will be a cure. Right now there is no cure for my disease (that circumferences NF1 as well.) Sometimes these walks for diseases seem so helpless in the bigger picture of the dying world, but what matters is keeping the focus on a hopeful future found in Jesus Christ.

But it is easy for me to lose sight of hope when all I see everyday is my body aging away. I don’t even know what to pray for at times. I know God has given knowledge and wisdom to countless research teams and doctors across the world to help patients such as myself;  I am very thankful for my team of doctors and therapists and trust their guidance. But even they can only do so much. It is our human nature. It is where “God Room” comes into faith.

I just finished Franklin Graham’s autobiography, Rebel with a Cause: Finally Comfortable Being Graham. I know I am about fourteen years behind from when it was written, but I am glad I took the time to read it as it taught me a few lessons in life and faith.

In one of the chapters, Franklin accompanies his friend Bob Pierce–founder of Samaritan’s Purse–on a world tour to see first hand the work that Bob ministered through Samaritan’s Purse to the hurting, sick and needy around the world by helping assist missionaries already in the areas. During the trip, Bob tells Franklin of leaving room for “God Room.”

‘God Room’ is when you see a need and it’s bigger than your human abilities to meet it. But you accept the challenge. You trust God to bring in the finances and the materials to meet that need.

I thought about this in my own life. With starting Physical and Occupational therapy a lot of my mindset has been, “These are things I can no longer do easily on my own or at all on my own.” It gets frustrating. So last night, I prayed for “God Room.” I didn’t go through my whole list of things wrong in my body. I figured God already knows that…but what I focused on was trust–trusting that God would (will continue) to meet my needs–both physically and spiritually. My physical condition is out of the ability of myself and doctors…but not out of God’s ability. With Him all is possible…and that means the “God Room” is pretty big!

*Graham, Franklin. Rebel with a Cause: Finally Comfortable Being Graham. Nashville: (Thomas Nelson, Inc., 1999.) Page 139.

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September 4, 2013 · 9:17 pm

This Isn’t Me

I should not listen to the mirror. It taunts me. But the truth is, it is not just the mirror. It is my entire physical body. It screams, “This is not Mel.” And I believe it. I just don’t see the Mel that I used to be. I am not the Mel that I want to see. She is gone.

Ironically, I struggled with self-image long before I was diagnosed with NF2. Over the years I have had my ups and downs…before the diagnosis, it was the desire to impress and be popular. Now it concerns physical changes or side effects from medicines. Lately, it is the latter of the two.

It is no secret that I have been on steroids since December 2012. It was not until March that I noticed a change beginning. It started in my neck: now, I am a fan of football, but the thought crossed my mind, “You have a football neck.” (If you don’t know what I mean, take a look at a defensive tackle roster and then you will understand.) I covered for myself and laughed that I was getting muscle from my neck exercises. Then it started in my face. I covered for myself and laughed, “My chubby chipmunk cheeks.” Then it came to my stomach. I covered for myself and bought new wardrobe needs.

But I am tired of covering for myself, tired of being a different Mel: I am tired of seeing my parents sacrifice their time and energy for me when I want to be able to do it on my own. I am tired of having the constant cravings to eat, matched with sick intestines. I am tired of the endless needs, weekly appointments, and crazy sleeping patterns. I think it comes down this: I am tired of trying to be the Mel that I wish to see. She is gone.

But I am still here. And I hope in time that I will again see Mel. Not by my eyes, but in the eyes of my Savior.

Aslan: “You doubt your value. Don’t run from who you are.”

C.S. Lewis, Prince Caspian: The Return to Narnia

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August 30, 2013 · 4:32 pm

When my actions eat my words…

A few weeks ago I made a short trip to the grocery store after church. Because the previous time I had fallen coming in the entrance when my right foot caught the corner of the rug, I came prepared that next trip by using my cane. I went along with my shopping–cane in one arm, basket in the other. When I filled my basket of fresh produce, I got in line to pay.  I am already slow at getting out my payment from my wallet but try not to get flustered at the line behind me; this particular day I was also trying to keep hold of my cane while paying.

At the last-minute or so, my cane falls to the floor. I had to firmly grasp the awkward paying counter ledge to maintain balance while bending over to try to grab the cane. As I regain balance and the cane, I come up to a standing position to see the lady in line behind me just watching. I say thank you to the cashier, grab my bag and head out to my car, replaying the scene over in my mind. I was so taken back that no one offered a helping hand. The polite gesture, in my mind, would have been to at least an offer to help–even if I was not using a cane, thus labeling me as “handicap”–it could be just offering help if I had dropped my purse and everything fell out. I dwelled on this event for a few days and told my doctors, “If I was the other person, I would have at least asked if they needed help.”

Today’s actions made me eat my words. Since my grandpa is visiting, we went to the state park for a picnic lunch then went to Young’s Jersey Dairy for ice cream. I was talking to Marcia on the way in the first door when I notice an elderly lady using a walker coming out the other double door. I even paused for a second to watch but she seemed to get to the exit door and from what I assumed could push it open. I should never assume these things; even with a cane it is awkward to get doors open–I can’t imagine using a walker in this case.

I get inside and turn around to see my Mom and Grandpa making their way to the other door. It is then that I get this sick-stomach-guilty feeling…I had just done the same to this lady as what had happened to me at the grocery store. I did not even offer a helping hand. I just paused, and turned away.

I should not dwell on my own misfortunes, but how I can help the misfortunes of others.

Jesus: “Which of these three, do you think, proved to be a neighbor to the man who fell among the robbers?”

He said, “The one who showed him mercy.”

And Jesus said to him, “You go, and do likewise.”

Luke 10: 36-37

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August 29, 2013 · 11:52 pm

Living in a Fast Paced World

At Tuesday’s doctor appointments, we discussed transferring me to a neuro rehab clinic for my Physical Therapy and Occupational Therapy. This is still in the future plans, but because I currently have a driving restriction until I take a driver’s mobility test (based off the way I am currently walking, just to ensure safety on my reaction times)–it could be up to three weeks until I get the test completed even though I am on the current waiting list. Because of this, I am not able to get myself over to the rehab facilities and since I have already started with Home Health, the plan for now is to let them finish their sessions and then I go on from that point. I have been pleased with my PT sessions so far.

My first session of PT was last week and I start OT next week, which I am anticipating, because today in getting ready my hands lost grip of my makeup bag–momentary sadness to shatter a perfectly good bronzer. Anyway, while last week’s PT session was mostly talk and the “see where you’re at” balance, strength and mobility tests, this week was a full 45 minute workout. I have had PT twice already: one after my first blood clot to strengthen my left leg and the second session this past Spring to strengthen my neck and upper back muscles.

I have never experienced a singe PT session that would literally leave me so exhausted that I had to take a nap in the afternoon. To demonstrate how weak my muscles are–picture me on my knees, lifting the exercise ball over my head (repeat 4 times). By the last, my arms were beat. We also did a lot of balance exercises where I lift one knee while on the other and then rolling the exercise ball back and forth while maintaining balance. To the average person, these may seem so easy, but to a person such as myself, it was difficult. To be honest, today I felt like a toddler…learning to balance and lift things, freely falling over and struggling to get up. But the strength and retraining my mind to use the muscles does not happen over night..it is baby steps. 🙂

Of course, I overdid myself this morning after my session. I went downstairs and painted a canvas that will be on display next week at a pizza parlor in Yellow Springs. (more to come on that!) I finished but had some extra paint and don’t like to waste it, so I set out to finish a small abstract one as well. No joke, the last few seconds of “finishing touches” on the painting and the table topples over!! Thankfully, the painting was not ruined, but for the cleanup process, I was back on my knees like my PT session and struggling to get everything picked up without making a bigger mess. By the end of my painting session, I looked like a painting. 😉

I had been to Michaels a few weeks ago to pick up paints and a pack of 8×10 canvases. At the check out isle there were some extra-large reusable bags and on an impulse decision, I bought one in order to carry my paintings around when they go on display in Beans-n-Cream or anywhere else. Artistically decorated, the front says the classic line, “Stop and smell the roses.” I thought of The Story of Ferdinand by Munro Leaf. Growing up, Ferdinand was different. While his peers were shaping up to be the best for bull fighting, Ferdinand just wants to smell flowers. Only when he sits on a bee does anyone take notice of him. At the bull arena, he is adorned with roses…everyone expects him to put in a good show, and he just wants to smell the flowers. 🙂

Too often I try to rush forward in my physical body, even though it is no longer capable of the word “hurry.” I forget to stop, breath in, smell the roses (sweetness of God’s mercy and grace) and realize that I don’t have to feel pressure to keep up with the fast paced world. God can use me just as I am…like a child.

They say that I can move the mountains
And send them crashing into the sea
They say that I can walk on water
If I would follow and believe
with faith like a child

Jars of Clay. “Like a Child.” Self-titled debut album. 1995.

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August 28, 2013 · 11:23 pm

Two months ago…

Yesterday marked two months of taking the chemo therapy, Sirolimus. Seeming like we had just made the trip to Children’s Hospital in Cincinnati, Mom and I embarked on yet another early morning drive. (And that was sarcasm…we literally had done the same routine on Friday morning for my MRI.) The only differences were (1) traffic–yesterday reminded me of why I don’t miss city driving; and (2) Friday I could drink coffee on the drive down–I could yesterday but not until after my lab work was drawn. I am very thankful for my Mom’s driving as I would have never made it on my own yesterday morning.

Yesterday’s appointment covered a LOT of things. We discussed my walking and balance, PT and OT therapy, the need for ankle braces, driving and safety, better communication methods for me between the team of doctors, and a few fun things like my paintings. 🙂 My initial intent was, as always, to blog the details and keep you informed on the latest like a news anchor, but I don’t think that it is best to do that this time. Everything is changing and more appointments are appearing; I will just blog as it comes.

Tonight I begin with my MRI results: I went to the appointment with a neutral emotion. A few weeks ago, under frustration, my thoughts were that if the tumors had grown more in the brain, then I would just want to stop the chemo. I don’t know where the attitude changed, but I realized last week that I found myself thinking differently. I reasoned that maybe two months was not long enough time for the medicine to have a chance, so regardless of the MRI results, I was fine with continuing the treatments. However, I didn’t want to be a pessimist, but because I have experienced continuing downside side effects, especially in my right hand, balance and right ear, I assumed the scans would show growth.

I assumed wrong. The MRI showed stable in the brain. 🙂 I still could be experiencing hearing loss and physical side effects from the tumors but that is where it gets tricky, because MRI scans only show growth, not density (if the tumors harden they squeeze more on the nerve)…but since there is no way to calculate this, I will just take the good news: there was no change. What a praise and answer to prayer! Two months ago I saw nothing but growth.

Overall, the MRI of the spine looked stable too. I learned something though; instances such as this amaze me at how much I seem to miss…then when I learn about it, my curiosity comes out as a weird question, “I have that??” It seems to happen more often than not…I seriously should do more study on my disease. Anyway, what I learned yesterday is that the tumor that grows in the spinal cord from C-4 to C-7 area has cysts resting on top and on bottom of the tumor. I never knew this. While the tumor has not grown any nor the bottom cyst, there was more fluid in the cyst on top of the tumor. They don’t know where the extra fluid comes from, but the cyst now rests in the brainstem.

They showed me the scan and the top cyst appears to be “ballooning” from the extra fluid (it literally looks like one too). It took me time to understand this effect of the cysts being like balloons, but basically it is like holding a water balloon and squeezing one end so that the other gets bigger. I asked if the extra fluid could be from the tumors in the brain that were growing…just maybe added pressure, but doctors were not sure.

Besides the physical challenges I typically blog about, the thought occurred to me that because this cyst is now in my brainstem, I should probably have more headaches (but I don’t have any) and more neck pain but that is minimal too. I could have a big list of side effects from the chemo, but so far I have only experienced a minimal few. I will remain on the chemo for another two months, then another MRI. Then go from there.

As my parents helped me today with the phone calls for the next step appointments, I thought of how I am surrounded: I have a circle of doctors who want the best for me, a family that sacrifices their agendas for me, friends who encourage me, prayer warriors who faithfully pray for me, and a mighty God who holds me in His hands. Changes are going to come and I am not the best at shifting gears…but as my Mom told me tonight, “You have to be flexible with this.” So as the calendar starts to overflow with different appointments over the next few weeks, I think I should just drop my expectations of how and when things should be done and just let God write in the details. It will make this complicated chaos more livable.

May all your expectations be frustrated.

May all your plans be thwarted.

May all of your desires be withered into nothingness,

that you may experience the powerlessness and poverty of a child

and sing and dance

in the Love of God the Father, the Son and the Spirit.

~Blessing given to Henri Nouwen by his spiritual mentor

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August 26, 2013 · 10:47 pm

Looking Upward

Over the weekend, I finally accomplished putting into chronological order and placing my college to present pictures in photo albums. It brought back many great memories. As I sorted, I found these pictures that made me laugh at the memory of the evening:

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During my years living in the Denver area, I lived in a neighborhood called Bel Mar. On the corner of Wadsworth and Alameda, this was the rising place for living and shopping. The Target I was employed at was about fifteen minutes from Bel Mar…connected to a flat mall that had an indoor mile track that ran its course around the stores. I enjoyed a mile walk on my lunch breaks. I think every mall should be modeled after that one.

Even though there were a few Target stores in the area, Bel Mar also built one a few months before I moved. It was one of the “new city” model styles where the parking garage was underneath on the “first floor,” making the actual retail store on the second floor, all of course equipped with escalators, a stairway, and an elevator. I opted for the escalators.

Mom came to Denver every other week to help me on my chemo weekends. After the grand opening of Target (we had watched it being built over time), I wanted to show her the inside of the new Target. Up until this point, I had only been in a few times, because it was more convenient for me just to get my needs and groceries from my Super Target rather than stop at another one on the way home. But with Mom, we had grabbed a few groceries and as we left, I made a discovery: they even had an escalator for your carts!!! I was laughing so hard, Mom was afraid I would fall down our own escalator. 🙂

Currently, I have recently developed a phobia of walking down the stairs. Going up the stairs is not a problem; just coming down. Too many falls in the past few months has triggered this phobia, but I can’t say that I had really classified it as a fear up until a few weeks ago when I mentioned it to a friend. Now I am not even sure if it is just the stairs I fear falling–I think it is falling in general.

With my balance continuing to worsen, I have now restarted Physical Therapy, but it takes place here at my house. Due to the decline of function in my hands (especially the right hand), I will also be starting soon some sessions of Occupational Therapy. The reason for having the sessions here at home is to help me with my everyday living. For example, because I started my first PT session last week, we did a huge overview of my current conditions and discussed the areas in which I need assistance. Most of my current frustrations deal in the realm of OT, but balance was a major issue for me in PT. She gave me a suggestion for going down the stairs sideways, but to be honest, it doesn’t make me feel any better about the decline. As for right now we are mainly focusing on extra balancing exercises to accompany the PT strengthening exercises I have been doing already.

To access my current conditions, my therapist had me perform some “strength and mobility” tests. I can only stand on one foot for a mere one or two seconds…and standing with one foot in front of the other depends on which foot is placed first. Considering I have had two blood clots in my left leg, don’t be surprised to hear that it is my stronger leg. I think it always has been to be honest. When we lived in Colorado, I did get the chance to learn how to snowboard before my balance would no longer permit the activity. My Dad insisted that my sister and I take a half day of lessons before we just went out on our own. At the rental shop, when deciphering which foot you will put forward on the board, the rental personal did a little test. He had me turn around and gave me a slight nudge. I put my left foot forward first. He said, “You’re a regular foot.” (A right foot is called a goofy foot.) I think if anyone gave me a little nudge today, I would just fall over.

I am seeing the reality that my balance and falling will worsen. I have no control over it. There are days when I am to the point of tears at my balance. Other days, I find humor in it. I think it parallels the balance of life: days when strength is strong and days when strength is weak…in both I need to keep looking upwards, knowing when I fall, He still stands.

I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.

Psalm 121: 1-2 ESV

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August 18, 2013 · 11:54 pm

These Hands

Today I thought of something funny: VeggieTales’ Larry Boy character has super-suction plunger ears! This thought enlightened my state of frustration as I was stalling between the entrance and outdoors of Target’s entryway trying to grasp my small Starbucks cup and walk at the same time. When I finally made it to my car I decided that I should not get a coffee less I was pushing a cart. These hands no longer grip cups the way the way they should…maybe I should look into gripping gloves.

My whole shopping list at Target consisted of two things: band aids and bathroom cups. The band aids are just for safe keeping as I seem to use them often, but the bathroom cups are a new idea I thought of the other night as I found myself rinsing my mouth after bushing but in the end biting my finger. My fingers no longer make a “cup-like” position as I found out.

My right hand is now entering a stage of numbness where my fingers are very heavy and tingle while the function is draining. I can still use my hand (my left is weak but actually now the stronger of the two hands.) My hand is just slow. Simple things such as holding a drinking cup (unless a mug), I now hold with both hands. I hold my toothbrush and chapstick a certain way between my index/middle finger as I drop them otherwise. I cannot pick things up with just my thumb and index finger, so when I drop anything on the floor, I have to use both hands in a scoop like fashion to try to recover it (while also trying to keep my balance). Zip lock bag days are nearing an end; and opening anything else in the kitchen can usually be done with these gripped circles my mom has or with a trusty pair of scissors. 🙂 I can’t get my hair ties in my hair and just an honest note, even sometimes certain things in dressing myself becomes difficult. And typing is finger poking.

These changes in my hand have happened very quickly over the past two months–it is often hard to see past the downslope of health. Next week will be the end of two months on the Sirolimus chemo treatment. My MRI is this Friday (the 23rd) and doctor check up on Tuesday (the 27th)–between the results of those scans, my current physical state and chemo–there is a lot to think and pray about. Try as I can to remain trusting in the Lord, my mind is often consumed with the “what if” of the unknown future that it consumes me. This happened last week, but it was also largely guilt I placed on myself for getting my chemo doses wrong with the new syringes.

In a conversation with my sister, she mentioned that because I have changed so much physically over the past few months, the mental/emotional part of my body is trying to catch up to speed, resulting in the way I have been over the past few weeks: emotional, distant and when not thinking of health, consuming my thoughts with things like teas, books or movies. I am not content…I have been in need. So when my sister mentioned this equation imbalance, I saw the truth in it. Up until this year, all the side effects in my physical body have been slow progressive. This enabled me to adjust to the changes at a steady pace…whereas these past few months it has seemed to be my whole body and I cannot keep the same pace.

I think often: “How am I going to continue to live like this?” But then I remember that I DO live…and God will be at my right hand until the end (Psalm 121:5).

Madam, when you [come] to the other side of the water, and have set down your foot on the shore of glorious eternity, and look back again to the waters and to your wearisome journey, and shall see in that clear glass of endless glory nearer to the bottom of God’s wisdom, you shall then be forced to say, ‘If God had done otherwise with me than he hath done, I had never come to enjoy of this crown of glory’. It is your part now to believe, and suffer, and hope, and wait on[.]

Samuel Rutherford*

*”4/to Marion M’Naught.” Letters of Samuel Rutherford: A Selection. Carlisle, PA: The Banner of Truth Trust, 2012. pg. 18.

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August 14, 2013 · 9:09 pm

A cup of tea

Mr. Tumnus: “Daughter of Eve from the far land of Spare Oom where eternal summer reigns around the bright city of War Drobe, how would it be if you came and had tea with me?”

“Thank you very much, Mr. Tumnus,” said Lucy. “But I was wondering whether I ought to be getting back.”

“It’s only just around the corner,” said the Faun, “and there’ll be a roaring fire–and toast–and sardines–and cake.”

C. S. Lewis. The Lion, the Witch and the Wardrobe. Great Britain: (Geoffrey Bles, 1950.) pg. 116.

I think Mr. Tumnus was on to something: tea is best when shared with a friend (or a way to make new friends); tea is always better served like a tea party (although I question his choice of sardine refreshments); and tea no matter what time of the year it is…is tea, and can be fully enjoyed whether on a sunny day or in the winter chill by a roaring fire. (In my opinion, rainy days make great tea days.)

The concept of tea started for me at an early age. We sisters would sometimes have tea parties. My older sister had a tea set and Mom would serve tea (apple juice) with refreshments (usually graham crackers.) Tea time was serious excitement.

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Melissa and I

tea0002 Megan

After the apple juice excitement faded, tea was non-existent in my youth–although I applaud my Mom’s efforts in having us try herbal tea. “Add some honey.” Even honey was not sufficient. I never touched tea again until college. Then everything changed. Tea is now a hobby.

Socially, I don’t throw tea parties but I have thought about it a few times. Back at my birthday, being in the south where the best tea resides, my parents gave me a book on tea party history and etiquette. It is fascinating. Books and tea, what could be better?

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You don’t necessarily need a tea party to share with friends. Over the past few weeks, I have been given in gracious amounts–tea–resulting in the enjoyment of a few cups during the day. I have been given teas that I have never tried or even heard of in flavor. Once again, excitement resides!–because as far as tea goes, I usually stick with flavors I know or ones that help my stomach (such as peppermint or Bigelow’s Lemon Ginger Plus). But now that new flavors are being given to me as gifts to try, my knowledge of tea choices is expanding and in turn I share the new favorites with my family or other friends.

In order to give, we must also receive.

In life, we have been given a divine invitation…more than just a tea party, the invitation is for eternity, “For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.” ~John 3:16.

The gift has been freely given–freely receive.

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August 12, 2013 · 11:39 pm

Recap: Art on the Lawn Festival

Hi everyone. 🙂

Can I just say for a Monday, today was good! I read Psalm 23 this morning in my study of finding the phrase “steadfast love” within the Psalms. Psalm 23:6 says, “Surely goodness and mercy shall follow me all the days of my life.” I never took note of this before, but today I read the numerical at the bottom reference to the word “mercy.” It says, “Or steadfast love.” So I noted the verse in my notebook.

I found Psalm 23 exactly what I needed to read after getting through the rest of last week and the weekend. God’s mercy and goodness was evident, but I cannot say that I held on to the steadfast love in all areas like I should have–instead I chose to cling on fear to a few health related issues…forgetting the peace and calmness of the still waters; forgetting how He restores the soul.

I am entirely grateful to my family who put up with my frazzled grumpiness and helped me immensely in the preparation (writing the price tags, putting in the thumbtacks and twine on the back of the paintings for hanging), set up/take down of my booth on Saturday and stayed all day with me at the festival. I could not have done this without them!!

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I will say though that overall I was better prepared this year than past year, including getting a better nights sleep. It is interesting to see the difference one year can make, even within my painting style. As Mom and I were pricing on Thursday, I took note of my work: focused on smaller paintings, more abstract and ones with media. I stretched myself last year in my paintings to paint detail and broad themes; some of my best work is from last summer.

But over the year much has changed and I can see the paintings this year represent my style of what I am comfortable with and best at painting–a more relaxed approach yet detailed in its creativity. I would be lying to say that I don’t miss details, because I do. But sometimes even painting my “Mel” at the bottom corner is enough detail for me. I am just thankful that I can still paint!

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So how was the art show? Fantastic! It was a LONG day…I could have gone for a second round of coffee, but the day could not have been better. We were blessed with beautiful weather and my booth sat right in front of a huge tree, which offered pleasant shade in the afternoon. In conversation, I did fairly well. It is hard for me, because I talk more than I listen just because I can’t hear…but as time went on, I felt more relaxed–enjoying watching people point to paintings they liked and meeting people or talking with the friends who came to my booth too. At the end of the day, I survived staying awake through dinner but then fell asleep on the drive home (last year I fell asleep AT dinner).

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I want to say a thank you to the staff at the Village Artians, who coordinated this event. They went above and beyond making sure that the vendors’ needs were met. I can’t say that I will be in next year’s festival (who knows what another year will bring), but if the door is opened, then I would love the opportunity to participate again. Either way, painting this year will not stop for five months as it did last year–doors continue to  open and I am ready to restart on the journey through art.

Creativity takes courage. ~Henri Matisse

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August 7, 2013 · 12:03 pm

Unshakable

The other night at dinner, we were discussing old movies. Old–as in black and white…as in Charlie Chaplin, Laurel and Hardy and the like. We grew up watching many of these kind…either that or classic reruns of black and white television shows, such as The Lone Ranger, Petticoat Junction, The Dick van Dyke Show, I Love Lucy, The Beverly Hillbillies or The Andy Griffith Show. If I ever need a hearty laugh, these are bound for success!

Don Knotts, who plays Barney Fife on The Andy Griffith Show, also starred in many funny movies: The Ghost and Mr. Chicken, The Reluctant Astronaut and The Shakiest Gun in the West are personal favorites. In the 1968 film, The Shakiest Gun in the West, we find Jesse W. Haywood (Knotts) fresh out of a dentist school in Philadelphia and now pursuing the West to open an office and provide his services there. One hilarious event after another, Haywood’s vulnerability places him right in the middle of a secret government case in which he has been lured into by the stagecoach robber, Penelope “Bad Penny” Cushing, who has been offered a pardon if she helps solve the case.

Haywood at the beginning of the movie is not what you would label a western man. Everything changes for him when the other wagon men see–what they perceive–as Haywood fighting off a group of Native Americans. Suddenly he is a hero. From that point on, his pride is fueled, enough even to accept a challenge from the famous and feared Arnold the Kid. It is only after this that he discovers the truth about his fighting abilities–it is not him, but has been Penny the entire time. Crushed, he returns to the plain old Jesse W. Haywood…a nobody in his eyes. I don’t want to spoil anymore of the movie, but I will say that in the end, we see that Haywood learns confidence. He has experienced the West and longed to be something big–but in the end, it is not his pride or fighting skills that earn him his recognition but simply by being himself and what he does best: being a dentist.

When my sister was here in July, we watched this movie. 🙂 I have thought of it a few times lately more because it gives me a few good laughs when I get frustrated with my hands. As you may recall, my hands are weakening–curled fingers due to muscle loss in the left hand and extreme numbness in the right hand which results in lack of grip and sensation. It is not entirely noticeable but my hands also shake. Not violently but just a steady jitter.

When it first started, I did not think much of it, figuring it was just a phase or I was tired that day or anything else excuse-wise that came to mind. When changes happen in my body, I allow myself a certain period of time to test and take note if it is indeed a change or just a spontaneous reaction of tumors with the nerves. Sometimes things happen only once, never occurring again. Unless it is crucial–like my notice of hearing loss–I don’t mention anything to my parents or doctors until it becomes a relevant occurrence.

One night, my sister came home and as we were talking she just broke in midsentence and asked, “Are you feeling ok? Your hands are really shaky.” I had not mentioned it to anyone yet…guess it was time to say something. That was early summer. As the summer months progressed, so did the shake. Sometimes my left thumb will spasm. It does not hurt; I just have no control over its movement.

I really don’t notice the shakiness until it is obvious: when I eat, when I write or as I observed last night..when I paint in detail. I was finishing my last two paintings for Saturday’s festival (exciting 🙂 ), but on the one I was elaborating with flowers and side margin décor. My shakiness started to frustrate me as my marginal fancywork continued to expand farther and wider than what I wanted, topping it of with my right hand smearing the metallic red paint amidst the baby blue background.

– – –

This past weekend, there had been (and will be) a lot of conversation about the days ahead and my health. Since my body continues to change, we are moving forward to get the help and resources set up in advance so when life gets more shaky, we have some stability. It was a rough weekend emotionally. As if shaking in fear of losing “independence,” I was reminded that receiving this help will in return help me to continue to live as independently as possible. There are resources and services that we are not familiar with…this is a whole new chapter in life.

It doesn’t come naturally for me to admit that I need the help, but it is then that I am graciously humbled. I had to set aside my pride to see the goodness in this situation. I see a parallelism to my prayers as well. I have been contemplating what it means to “ask, seek, knock” (Matthew 7:7). Three action verbs…why are they so difficult to act upon? And yet I can come before God at any time, not with shaking or trembling, but with confidence.

Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need…[and] let us be grateful for receiving a kingdom that cannot be shaken.

Hebrews 4:16, 12:28a

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