Tag Archives: living with disabilities

Driving: Take Two

Yesterday started out like any other typical “It is an important day today!” —

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Let’s just throw out the fact that it was a Monday.

Yep, the day in which I was to complete part two of my driving evaluation tests could not have started out with any better of the typical important day fashion: sleeping past my alarm and Mom waking me up fifteen minutes before we had to leave. Her ever-calm assurance in these situations met my panic mode as I stumbled out of bed and started going through my morning list of important things I had to do (let alone getting somewhat presentable for the day): feed Muffy, take medicines, etc. “And I need coffee.” Mom said she would make sure Muffy is fed and start some coffee.

Only a few minutes past when we had to leave–with fresh coffee and an apple for breakfast–I get in the car and feel like I can finally catch my breath and looked forward to getting the test over and done! It amazes me that something like this can consume your mind. I do not have a problem with my driving–and yet when doctors first ordered the evaluation back in August, all of a sudden the restriction caused me to doubt my driving–so much that I was having dreams of being in accidents. After the first evaluation September 19th (even though I passed), I still had restrictions until I took this second part. I was able to practice in empty parking lots, which boosted confidence, but it is not a main road.

Feeling confident, I sign in and a few minutes later head out the door with the PT to the Student Driver car. I have only driven one of these official cars once for Driver’s Ed class…that was ten years ago. My instructor (who was also my history/government teacher) must have trusted his students as for our actual driving license test, we could choose between the Student Driver car or one that we had that we were more comfortable driving. I chose the latter of the two options…nothing compares to our family’s 1987 Honda Accord. It is like an heirloom. It witnessed at least thirteen years of high school drama from the parking lot between me and my sisters. Pretty classy!

Anyway, I would have felt more comfortable in my own car (logically), but since it was not a possibility in this situation, I tried my best to adjust to the Student Driver car even though there were many things very different from my car. I found my biggest frustrations being their steering wheel having these huge box-like attachments right above the “9” and “3” area..which is usually where I place my hands. (Note that this test was caused by the concern of my hand function in the first place, so the scenario didn’t suit well.) I also had a problem with the side view mirrors not having the small blind-view mirrors. (Those have saved me from numerous episodes of changing lane woes and proved so when I was doing some reverse exercises with cones in the parking lot.)

We finally get to driving around in a very pretty residential area–being fully determined not to mess with my chances of the evaluation, I kept my focus. Once we determined that the motion for “keep going straight” involved two hands (better clarification), I meandered, slowly, through the neighborhood. When we finished and headed back, the PT asked me how I felt about the driving and I told her my honest opinion (seeing no problems). Never assume a professional PT sees your driving the same way. As we met to discuss the results with my Mom, the PT explains her two things that she sees as a concern (which I do not see in context of the driving experience how they fit in properly to what I thought was the main concern : the grip and strength of my hands!) As soon as I figure out that I still do not have the official okay to drive and that I must return one more time, I bluntly express my point of view in one short sentence. I set up my next drive for the 21st and cry in the elevator–expressing my frustrations to my Mom. There are some things I just do not understand and what they want to see in these evaluations from me is what I do not understand.

There was good in the morning though…I can drive normally in my car as long as one of my parents is with me. Talk about feeling like being back in high school, but I am very thankful for this outcome (even if it is still an inconvenience to our schedules.) By driving  the roads, I can now get back to feeling like a normal driver and hope I spend less time dreaming doubts and trusting that God can use this time to help me gain more confidence as yesterday was my first time “on the road” since August.

But yesterday I also felt my conscience tug at my heart over my attitude at the PT right before we left. I did not mean to bluntly express my opinion, but it came out. And I feel bad for it; I hope I did not ruin her day. I am sure it was just as awkward and maybe frustrating for her to navigate a deaf person around a neighborhood and through cones in a parking lot. In my childish actions in response to the PT’s professional opinion, I see how wrong I was and asked God to forgive me.  Taking my driving evaluation as a lesson: These are events that I  cannot go back and change, but instead, learn from it and set out focusing on doing better next time.

Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear.” ~Ephesians 4:29

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Appreciate the Hands Day

There seems to be a “day” for everything. My favorite part of the lounge at work was the huge calendar posted on the wall with different events for the week or special days, such as “National Marshmallow Day”; “Chips and Salsa Day”; “National Crossword Puzzle Day”; “National Peanut Day”…I mean literally–the list is endless! The only one that I have never been a fan of is “National Talk like a Pirate Day.” Our brother dorm during my freshman year of college literally took the day into full effect, some with costumes even. It was fun but after a few “Argggg Matey !” I had heard enough. But they did it ALL day–gruffy accented pirate talk–I just found it annoying. 🙂

There are days of fun, days of remembrance, days of randomness, days of awareness. Even this past Sunday was National Coffee Day, in which I took the liberty of enjoying a second mug of our freshly brewed Seattle’s Best. This post has been long time in the making…in other words, I have wanted to do this post for a long time but I believe that the timing was delayed….because God was bringing me to this point where I would learn from this post experience…where my physical body would be at a place to where I fully understand the significance of being thankful. It is the season of the soul.

Therefore, I now take a new liberty and declare today as my own, “Appreciate the Hands Day.” (In part celebration of the last OT session this morning, in which we finalized my list of things needed to order on my own and also received a few new helpful tools for my finger function).

Take these hands and lift them up
For I have not the strength to praise You near enough
See I have nothing, I have nothing without You

Bebo Norman. “Nothing Without You.” Try. 

Around my birthday, my grandpa sent me a card with a beautiful picture on the front. It was one of those reprint cards where it was an artist’s painting…in this case a watercolor. Curious of the painter–figuring it was someone famous like Monet–I flipped it over and the first thing I notice is how sloppy the artist’s signature looked. My mind is not fast to pick up on these things, but it took me a few minutes to make the connection (and also reading the description of the author) that this particular watercolor was not an ordinary watercolor. It was designed by this artist who painted it with his mouth as his hands were idle. My mouth just dropped. I would have never known if it had not been for the signature and description on the back. Come to think of it, up until that point, I don’t think I had ever known about that type of art work…only one exception would be Joni Eareckson Tada.

I googled a bit and found the Mouth and Foot Painting Artists website and soon found myself reading through the list of artist bios and pictures. Just astounding talent and artwork! http://www.mfpausa.com

The thing is at that point in time, my hands–although starting to weaken and numb–were very able to function “normal” (to borrow the term.) The thought came to mind that I should try a painting by using my mouth only, but never put the full effort into the idea as I was painting other canvases, especially for the show. Now that my hands have come to a point in major lack of motor skills and function, the mouth painting idea came back to mind. To fully appreciate  my hands, I wanted to “have none” for a painting. It was an eye-opening experience. (Although I did ‘cheat’ a tad, because I was home alone and had to set up, choose and squirt my paint using my hands, but the painting itself was all by mouth. Even my ‘Mel’ signature. It really gets to your neck after a while!)

I still say “good grief” in frustration tones at certain times during the day when my hands just become frustratable (yeah, I just made up a new word! 🙂 ) But in this season of learning to give thanks for everything–joys or trials–I am now seeing that my feeble hands are still strong enough to help me, so I can’t give up on them just quite yet.

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I have set the Lord always before me; because he is at my right hand, I shall not be shaken. Psalm 16:8

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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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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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When I Grow Up

Do you remember sitting in elementary school and being asked the question, “What do you want to be when you grow up?” Like an early career fair, sometimes you wrote a paragraph on the topic or discussed it in class when guest speakers came to relate their exciting tales of their specific job positions.

However, to be honest, I don’t ever remember someone specifically asking me this question (besides the classroom setting as a whole) or if I ever gave a specific answer. I have tried to think back to see if I can remember, but I think my career interests back then until the time I reached high school were merely daydreams. I do remember at a young age seeing an orchestra perform on television and that is when I decided I would someday learn to play the flute. When this turned into a reality, I then ventured to dream that I would play in an orchestra…maybe a famous soloist. Well, I did get my solo moments in concert band. We may not have been an orchestra, but I consider performing Georges Bizet’s songs from his opera Carmen a good try (plus it was my favorite solo moment.)

There were other daydreams. I had always wanted to be a singer in a band. I strummed my air guitar or keyboard as I jammed to the music. Being an over dramatic girl, I played the roles of Florence Nightingale or once pretended to be a doctor. I sat on the side of my bed, clip board in the left hand, and stared at my invisible patient. As I went on to explain how the eye is connected to the brain, my invisibility was intruded when my sister (unknown to me) walked in on my consultation. Yes, the eye is connected to the brain, and somehow that was the funniest scientific truth my sister had ever encountered.

It was not until high school that I started to take interest in careers that were more than daydreams. Once I discovered I had interest in the world of business, I filled my schedule with classes such as Accounting I and II, Marketing, computer courses (much has changed in technology since then!) and I jumped at the opportunity to be an editor of our school yearbook. After I graduated, my job at the local florist shop gave me experience in every area, with my favorite of handling the money transactions or office management, such as mail and filing. It came to no surprise then when I started college with an Accounting major in mind. After failing miserably on my mid-term in Accounting II, I realized that the subject was way over my head and focused my emphasis on Management instead.

The funny part about having a degree is that sometimes it pertains nothing to your current career. To make a living while finishing college, I worked as a cashier–even after graduating. I slowly gained responsibility and trained to be a cash officer, which ironically, resembles an accountant’s role minus taxes and payroll. I enjoyed this and for the first time felt I had “a career.”

I was crushed when I felt God calling me to end my career that I loved last October, but I see now that it was His timing as the winter brought all the health battles. By the time March rolled in, I was feeling myself again physically and was becoming bored. So I restarted job searching. I wrote once back in college, “Job hunting is like chasing a white rabbit in the snow.” My sister wrote me back and commented, “That’s a simile.” I don’t have any clever similes up my sleeve this time, but I will say that the search has been frustrating. Not because there are no jobs on the market, but because I am not physically what I was even two months ago and I guess I question what I can actually perform in the world of work.

I know work means many things–there is work where you get paid or you can volunteer your time and work to serve others, both being honorable positions as long as the motive in your heart is pure. Colossians 3:17 says, “And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.” I enjoy the times of volunteering–even if it is just time spent with a friend on a lunch date. But I also have a desire to work and finally admitted I needed help in that process, so I contacted the Bureau of Vocational Rehabilitation. After being approved for their services, I had another meeting with them yesterday to continue the process.

I was still uneasy about the meeting, but over breakfast I did more brainstorming on different areas that I wanted to discuss with the counselor. As I finished my coffee, I set out to finish the last chapter in the devotional book I started about a month ago. God’s timing of words spoken to the heart never cease to amaze me. And so I read:

Out of all history, God chose this time for you to be on earth.

We may think back with regret on who we wish we’d been. We may look forward with fear about who we might (or might not) become. But the only place where we can offer ourselves, where God can use us, is the moment we’re in right now.

Gerth, Holley. You’re Already Amazing. Grand Rapids, MI: Revell, 2012. (180-181).

I may not kn0w my future career, or the timing of it how it will all come together, but I can rest assured…life is more than the aimless chasing of white rabbits in the snow.

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The Book: “NF2: Our Journeys”

Question: Where has this year gone? Here we are in July already! Stop and think for a moment on all that you have done in the past six months. If you are like me, you may be wondering how you are going to write your Christmas card this year; thankfully, we still have another six months to figure that out. 🙂

As I reflect, there is a list of major events on my calendar: blood clot, hospital trips, Physical therapy, paintings, a few visits to see grandparents, Spring Break vacation, books read, made new friends, turned another year older, overcoming new physical limitations, visited my sister a few times in Columbus and Megan visited from Colorado…and last but certainly not least: I wrote about my life (limit 1500 words) for this book NF2: Our Journeys.

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January 2, 2o13–a representative from The Children’s Tumor Foundation contacted me through my blog in response to a letter I had sent to the foundation at the end of the previous year. Three days later, she contacted me again. The Children’s Tumor Foundation works alongside a foundation in the UK called, Children With Tumors. There was an opportunity for those with NF2 to participate in this publication (sharing their story)–all started by Jessica Cook who also lives with NF2.

January 9, 2013: Unexpected blood clot.

January 10, 2013: In hospital and I get an email from Jess. This is where it began.

I can count on both hands how many people I have known/met personally that live with either NF1 or NF2. Yes…less than ten people. It was only when I started this blog that my social group of “meeting” people who live with NF2 expanded slightly. When Jess first emailed me, it was about the book. I had no idea over the next five months I would not only get to be part of this amazing opportunity to share my journey of living with NF2, but also make a new friend in the process.

January and February were crazy months of doctor appointments, physical therapy and painting. I had until the end of February to write my story. Not that I procrastinated, but a combination of all taking place those months and just a lack of not knowing what to say, I finally forced myself to sit down a few days before the due date and write. I submitted it the day the rough drafts were due. By this time, Jess and I had been emailing back and forth and she responded to my draft with praise saying that it was what she had expected. That put my nervousness at ease.

My story was edited (spelling, grammar, punctuation) by Jess and a few of her friends and then sent back to me to read and review. I asked my cousin, who is known for her exceptional editing skills, for help on a few sentences and wordings–then satisfied–I sent it back to Jess saying it was final on my end. I picked my “author name” for the introduction and submitted a picture. (Muffy is famous! 🙂 ) By this time, I now had told my family about Jess and the book; I had mentioned it to my doctors in Cincinnati and wrote about Jess to my grandparents. Just talking about it all was exciting!

Getting to know Jess over the past six months has been both encouraging and inspiring. We never started our emails from the past (full life story)…we started right where we were at the moment. Sure, past events have come up in our conversations, such as, physical changes we have endured, emotional battles we have overcome (such as isolation and self-image struggles) and how living with NF2 has broadened our life’s story in ways unimaginable.

Jess’ work in the UK through her social advocacy website and group–Can You Hear Us?–has inspired me to be connected. I have been reading other blogs from people living with NF2 and (though good intentions) need to make a better effort to seek out the Deaf community here. It has also helped me to seek out the possibilities when life hands you disabilities; I believe God placed this book opportunity in front of me for a reason–because these past six months, I have seen my body change and weaken faster than the other nine years of living with the disease combined.

I say it often, but it is the truth: It is only by God’s strength and mercy that I can still function what I am. And He has shown me in abundance the past few months that what I currently struggle with physically is not the end–there is still more to my story waiting to be told. There is always room for hope…

My story: I seems to be a re-occurring phrase over the past few weeks. A few days ago I thought of the hymn “Blessed Assurance.” I think Fanny Crosby wrote what I feel about my story best:

Perfect submission, all is at rest
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

This is my story, this is my song,
Praising my Savior, all the day long;
This is my story, this is my song,
Praising my Savior, all the day long.

– – –

To buy a copy of the book:

http://canyouhearus.co.uk/nf2-book/shop/

(Shipping is included in the book price and PayPal converts the total for those ordering from the United States.)

For More Information:

Cook, Jessica (producer). NF2: Our Journeys: A collection of inspirational stories written by people with NF2. Lavenham Suffolk, UK: canyouhearus.co.uk, 2013.

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips, Muffy, Paintings

I Breathe

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“Today” by Iona

– – –

Today the grass is greener

than I have ever seen

Today the sky is bluer

than it has ever been

And Today my heart is breathing

like I’ve never felt it beat

And Today flowers are growing

from the ground beneath my feet

– – –

Today my hope is stronger

and the visions clearer

To walk in Love eternal

the path that takes me nearer

And to You the music’s playing

like it has never done

And to You my feet are dancing

underneath the sun

– – –

In You I Live

In You I Live

In You I Live

and breathe

This song is exactly opposite of what I actually felt this morning. The day is indeed beautiful with the sky bluer, the grass greener and flowers growing around the back patio. And inside myself I felt distant from this beauty of the day. I did not feel like dancing, making music in praise. I felt heavy…burdened. Sorrow instead of joy in the morning.

Last night, I laid it all out. In my conversation with my dad, we discussed everything that I could think of at the moment…this decision about the chemo treatments is not just the treatments. I realized it goes so much deeper than that…job, living, safety factors as my body physically fades, side effects of medicines, what happens after I can no longer be on certain medicines, independence and dependence decisions, current pains, current emotions, hopes that seem lost…

In a day, I don’t think these things in this much depth. But because I fell asleep last night still questioning…today, the heaviness lingered. I started making my morning coffee and asked God, “What happened to my joy?” I remembered a verse where it talks about our sorrow turning to joy–so I set out to find it. I should have known it was in the book of Jeremiah. In chapter 29, God assures the Israelites that He has a plan for their future, one that prospers and brings hope (29:11).

This morning I felt too that I was in bondage…exile from former things, out of my comfort and asking God, “Where are You? Why am I here in this place suffering like this? And what is going to happen in my future?” Seems last night that is all that happened–I just asked a lot of questions. My earthly father put his arm around my shoulder as I wept. He could only answer my questions honestly saying, “I don’t know.” But my Heavenly Father says, “This may not make sense at the moment. I know your pain, sorrow, confusion. Seek me and trust me. I love you and have the perfect plan for you. Your sorrow will soon turn to joy.”

Then I found my verse that I was seeking–Jeremiah 31:12-14 (The Voice):

“The redeemed will return home and shout for joy from the top of Mount Zion; they will shine with the sheer goodness of the Eternal— The harvests of grain, wine, and oil; the healthy flocks and herds. Their lives will be like a lush, well-watered garden. From that day on, they will never know sorrow. Young women will dance for joy; young men will join them, old ones too. For I will turn their mourning into joy. I will comfort My people and replace their sorrow with gladness. From the overflow of sacrifices, I will satisfy My priests; All My people will feast on My goodness.”

My own visions are unclear, but seeing through eyes of faith gives freedom from this sorrow–maybe not physically, but in my soul. I learn to live. And I breathe.

We have the idea that God is going to do some exceptional thing— that He is preparing and equipping us for some extraordinary work in the future. But as we grow in His grace we find that God is glorifying Himself here and now, at this very moment. If we have God’s assurance behind us, the most amazing strength becomes ours, and we learn to sing, glorifying Him even in the ordinary days and ways of life.

~Oswald Chambers, My Utmost for His Highest, June 4.

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Filed under Adjusting to NF2, Family Times, Paintings

List of my insufficiencies

Kermit. Miss Piggy. Animal. Rowlf the Dog. Beaker. Fozzy Bear. The Electric Mayhem.  Statler and Waldorf. Rizzo the Rat. The Swedish Chef. (Just to name a few.) If you have ever seen any of the Muppet movies or The Muppet Show episodes, I am sure you can envision the characters, the voices, the humor. And sometimes God uses the strangest Muppet analogies to give me humor in spite of my insufficiencies.

This past weekend, I started my notes of things that need to be discussed with the doctors tomorrow. I see a team of different specialists: my main doctor for the MRI results and treatment plan; a pain team management doctor for the tumors in my hands and the pain in my neck/upper back; a follow-up with my doctor for the blood clot and a few others. It is a long day–early to late in the afternoon with all the evaluations being meticulous, but repetitive. There are the talks of future possibilities, different treatment options available, different steps or things to watch. My brain about half through goes into standby. So I started bringing a list. I do better with lists. I am a note-taker person. It helps me focus and understand or stay awake. 🙂

So this list is all the changes that have occurred in my physical body since my February visit. After my scribbles of a list was finished, I put my pen down and cracked my knuckles. (I know you are not supposed to do this, but it feels good and I figure my fingers are already worse off anyway.) I look at my hands and start to laugh. Out of nowhere I remember my MRI experience from last Thursday. That day, I thought I would take a nap during the scan, but the technician asked if I wanted a movie. I looked at the list anyway and figured I would just watch something fun and that I have seen before so if I fell asleep then it was no big deal. I skim the options fast and choose what I see as “Muppets.” Now assuming this was The Muppet Movie, I get cozy with my arms strapped in and headgear set in place. The movie starts and this is no Muppet beginning…it is Muppets from Space and I think, “Oh boy. I haven’t seen this in forever!” The first fifteen or so minutes, I was breathing so hard through my nose, because it was the only way I could keep from laughing!

I did end up falling asleep during the movie, but I don’t think I would have ever thought of this on my own if I had not watched that particular movie, because unlike the other movies where Kermit and Miss Piggy are the lead characters, this time it was Gonzo and Rizzo the Rat. Gonzo. Classic character. Classic nose.

gonzo http://www.imdb.com/media/rm2902164736/tt0158811

See that nose? If you are wondering how my left ring finger now looks as it continues to curl in–think Gonzo’s nose. It matches. Find the humor in the analogy and laugh. It’s ok, because I already did.

In making my list for the doctors, I found the “head and shoulders, knees and toes” song was the best way to organize my list so I started with my hearing; then my neck and upper back–more pressure and getting hard again to stand up straight or hold up my chin; my arm and hands–besides the “Gonzo nose” finger, my left middle finger has significantly started to curl as well. Whereas my right hand just went completely numb to my elbow making things like holding pens, buttoning my pants, putting in bobby pins, holding cups or texting, holding my toothbrush, tying my shoes, pouring coffee from the pot and typing more of a daunting task than they should be. My bowels still deal with constipation; and my legs/feet are weak. I can hardly get up off the floor or when I bend over to pet Muffy, if I am not holding on to something then I easily loose my balance and occasionally just fall over. Strange though, I have not had any pain spasms–Charlie Horse cramps in the legs–but no pain spasms!

I usually look at my list and I see my life becoming less independent. And if there is one thing in life that would be the hardest to surrender, it is my independence. It was the reason last year that I struggled so hard with moving back home. But where I could only focus on the losing part, God had bigger plans and he has been helping me to see that I can still live fully on my own. I just have a few speed bumps that take a bit slower t0 get over. Yes, there are days when I am completely frustrated at my hands or cry and say, “A 25 year old should not have this problem!” (like not being able to button my pants.) But to see past my insufficiencies helps me to see how blessed I truly am, because I have resources available to help and when the resources can’t, my family can.

Over the past few months, things of this have been changing: I got my own plates, bowls and cups that I can hold better; I have my special silverware and we just ordered more because I constantly use my fork and spoon now as it is. (See utensils here.) We also just ordered a button hook so I can button my pants; coiler elastic shoelaces so I don’t have to worry about tying my shoes or bending over when they come untied; and I bought hairbands so I don’t always have to use bobby pins. If I go clothes shopping, I have to be able to put the outfit on myself or I don’t buy it; I went back to wearing dangling earrings, because most often they don’t need backs so I don’t have to worry about trying to hold the tiny piece of metal; I gave away all but a few cd’s as I came to a peace about losing my hearing; and have been getting really good at finger poking at the keyboard when my hands otherwise are too tired or cramped to type in a normal fashion.

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest 0f the year, but as I gather my list of insufficiencies, I remember that when I can’t…He can.

I think I can’t, I think I can’t
But I think You can, I think You can
I think I can’t, I think I can’t
But I think You can, I think You can
Gather my insufficiencies and
place them in Your hands, place them in Your hands, place them in Your hands

~Relient K, “For the Moments I Feel Faint”

Other resources:

http://www.arthritissupplies.com/good-grips-button-hook.html

http://www.arthritissupplies.com/coilers-elastic-shoelaces.html

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips

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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Filed under Adjusting to NF2, Books and Movies, Family Times, Funny Stories, Random

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…

DSCN1665

6 Comments

Filed under Adjusting to NF2, Random