Tag Archives: hope

Homemade OT

“Do you want to go out on the patio to sit?” We had just finished dinner and Dad was up from the table already starting to clear the dishes to the sink. It was a particularly toasty day, so I had only ventured outdoors when Mom drove me to my short doctor appointment in town. But around supper, the temperatures dropped slightly making the air pleasantly calm and a soft warmth.

“I’m not sure what I am going to do,” I reply to Mom’s question. Before dinner I had finished a book–downloaded on my Nook–that a friend recommended to me. I was all caught upon emails, not planning on starting any paintings, had a clean room and just did laundry a few days prior, and didn’t feel like resuming finger-poke blog entries just yet. In a word, I was a bit bored. I could have called someone on my Captel phone for a conversation, but decided fresh air was needed.

I was taking the last of my medicines in the kitchen and thought of what to do while outside. Mom was going to be planting the yellow Columbines she recently bought from Lowes and Dad was working on (what looked like to me) weeding and installing the new garden hose. Never being one with a “green thumb” and now too adding my limitations of walking, bending over due to balance and my hands–I am pretty much no use in the garden. (Although I do play a role sometimes of watering the flowers and small bushes near the house with the hose.)

I decided I could sit at the picnic table and continue where I had left off earlier in the morning, reading and recording the verses where the phrase, “steadfast love,” appears. I had started this quest last Fall, but stopped after finishing Psalm 119. The notebook of references fell to the bottom of my upper right dresser “junk drawer” and it wasn’t until yesterday that I found it.

Lost in thought about the Psalms, Mom comes back to the kitchen and starts talking to me about using rice as an Occupational therapy exercise. Taking into consideration how the numbness in my hands affect my feeling, holding or picking up objects (I demonstrated with my medicines,) Mom continues to explain this simple exercise in an excited fashion. Totally missing a few context pieces to the conversation puzzle, I just understand that if you put rice in a bowl with objects, such as beads or coins, use your hands to feel around for the objects (because you can’t peek in the bowl for them), then it helps–not only your hands and finger touch awareness–but strengthens the mind. It’s like a psychology OT exercise! Stimulating!!

Instead of sitting around the picnic table, Dad suggests sitting under the tree nearer to where they are working. It was lovely! As I am getting ready to pull out my Bible, Mom asks if I wanted to try the rice bowl activity. “Sure,” I say. Mom goes in and gets a bowl of rice and places in “hidden objects” for me to find with my hands. The objects slowly discovered: nice sized wooden beads and pennies. “How many pennies are there?” Mom turns her head so I can lip-read, “Twenty.” Twenty? I found two. ūüôā

It amazed me how just weaving my hand in a bowl of rice “looking” with my fingers for objects, felt like an exercise. My hand was physically tired; I rotated between left and right. My physical therapist had commented on how much atrophy she saw in my hands, then showed me a strengthening exercise to help with the curling fingers. But it persists. The hardest part of nerve loss is that it can never be regained, though I can keep it for as long as possible if I retrain my brain using the muscle exercises. It might not amount too much, but it is better than being idle.

The book that I had finished before dinner is an autobiography titled, Life, In Spite of Me: Extraordinary Hope After a Fatal Choice,¬†by Kristen Anderson. At age 17, Kristen had lost all hope to live and attempted suicide by laying on a train track one block from her home. But she did not die. God, in miraculous ways…unfathomable ways…spared her life–a second chance. Through the long, hard recovery, Kristen came to know the healing power of God’s forgiveness, mercy and grace. Although she didn’t understand God’s timing, she started to share her story. She had questioned what life would hold with no legs…her future…but the more she shared, the more outflow of how her testimony helped others who were hurting came to light. Feeling God’s call, Kristen started in full-time ministry and founded Reaching You Ministries.

There are moments in my life where I question my abilities, strengths and future. It is not an easy road…and unlike Kristen, my body will never recover here on earth. But the encouragement and hope I found in Kristen’s testimony gave me the reassuring peace that my abilities, strength and future are not like the shifting sands…but solid, unshaken…held in God’s hands.

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.

Refrain

On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground isinking\

“The Solid Rock.” Edward Mote. 1836.

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NF Awareness Month

Well, it came and went–May, as I forgot and was reminded yesterday–was NF Awareness month. It was also Autism Awareness month. I don’t find it necessary to tell you facts or stories of NF–you have already read my blog entries. So, I will end this NF Awareness month with something different–none of the talk, such as, “This is a side effect of medicine or tumor function;” But talk of living life with NF2–because,¬†I will tell you plain, it has, is and will continue to change my life.

Once in a conversation with my friend Jess, we discussed our thoughts and feelings about the topic of researchers finding a cure for our disease. I thought about it for a long time and finally responded to her email, saying that I cannot imagine life without it. Please don’t consider me a strong person, because if anything, this disease knocks you down. There are more moments were I detest my own body, wishing that I was something more rather than being thankful for what I have–in other words, as my body continues to unwind, I feel left behind.

Yet looking back at the road thus far, I am aware that life has been filled with divine moments. Moments where God met me in my lowest state and helped me back to my feet, never leaving me behind. And so life continues–to the end, which is the beginning of Life.

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Revelation 21:4

PS. I believe that¬†God has given doctors and researchers the skills, resources and knowledge to help individuals suffering with illnesses, such as myself.¬†Although at the current moment, there are no treatment options available for me, I still desire to walk with hope in the Cincinnati NF Walk, June 22nd, and support the further research of NF, along with those persons in which the research impacts through results, such as new treatments. If you would like to donate for this cause, there is still time: Team A Mile in Mel’s Shoes

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Sounds of the Soul

Something’s missing.

That is how I have felt these past few weeks. I don’t have to embark on a search party to find what I am missing, because I feel it deep down. Deep in the soul. I know what it is: it is music.

I think the feeling of void came flooding back when I was making a short list of important songs for my parents before they left for their trip. One song being an old favorite by rock band Petra, I spent a few hours one evening between email replies singing to oldies by watching music videos. I admit–I even watched my boy band. Yes, this is extreme music voidness if you find yourself reliving those junior high obsession heart-throb days. But there was no turning back; Plus One’s hit is forever, “Written on My Heart.” ūüėČ

And so Easter morning arrives…yesterday was gorgeous. The sun shining as if radiating glory and proclaiming, “He’s Alive!” Not that Easter morning has to be sunny. Jesus is very much alive today as He was yesterday or will be tomorrow. That is the hope and joy of Easter. (Hebrews 13:8.) But the sun made it extra special to say the least and I was excited for worship that drive to church.

My excitement wore off as we started singing. I only knew two songs. Sure, I could read the lyrics on the power-point and could make-up tunes of how I thought the song sounded based on the tempo I was lip-reading (a bit fun, almost like imagining character voices in your head when reading books), but it is not the same. The void came crashing back and instead of Easter joys, my mind started meddling with self-pity.

The sermon starts and I am not getting much out of it, because there was no sermon notes left in the foyer, nor did they use the power-point unlike usual Sundays. My eyes are not lip-reading well that far from the pulpit, so I start thinking of music and my favorite Easter songs, such as “He’s Alive” by Don Francisco. Then in almost in demanding anger, I say in my head, “I want to hear music!” The music void.

I sit and think. Then it dawns on me, like the morning sunlight: My ears are dead and useless to me now, but one day, they will hear again. And what a sound it will be!!!

 

 

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Today’s expectations

I expected it to be an early morning: 5am, it was.
I expected the coffee machine at Children’s to boost my morning energy: the new machine was broken. 8am, no coffee.
I expected the appointments to discuss the main issues–balance, intestines and overall function–with a long list of things that can help for “future” changes: it did, but without the long list.
I expected my MRI results to come back reporting “stable” conditions, even though I have still experienced ¬†some physical changes, like numbness in the right hand: it did and I am thankful for no tumor growth.
I expected my doctor to want an MRI in another 4 months: he didn’t and left the choice to me. Next MRI is planned for mid-August (6 whole months!) ūüôā
I expected all my questions to be answered: they were, along with much great conversation.
I expected to leave by lunch: 12pm, we did.
– – –
Life is often lived in arrays of expectations. A day like today shines bright and hopeful; other days, the expectations fall into shadows of despair. And what of the expectations I hold for myself? I often feel the “need to perform” or “prove” to doctors that I am still doing my best possible. And though I did not struggle much with that today, there were still moments.¬†And what of the Great Physician? Why do I feel the need to prove myself to God physically? He knows my body is broken. And he heals: maybe not in the ways I expect, but always in hope.

The hope of the righteous brings joy, but the expectation of the wicked will perish. ~Proverbs 10:28 ESV

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Thinking of you.

Three words. It can change the whole course of the day, especially when God intervenes in timing. He knows when you need to hear them spoken to the soul, when you need the nourishment because the circumstances around you have left you exhausted and dehydrated. I can’t even count the times this has happened during my journey, the last 11 years.

Last night, I found myself on Youtube watching those inspirational-acts-of-kindness movies that get you a bit teary eyed. It might be part of my personality traits, but I got to admit…all those childhood days of pretending to be Florence Nightingale¬†came to memory and I suddenly wanted to do something for someone. Something big.¬†I wanted to be one of those inspirational stories; I wanted to make a difference in someone’s life. All I could think of was donating money to different places. Why does it always seem t0 come to that?

Today I finished an autobiography, Unthinkable, by Scott Rigsby. He is a double amputee above the knees. At the age of 18, a truck collision shattered just about everything in his body, especially his future dreams.¬†Reading the first two chapters you clearly see that it is a miracle he is even alive. Over the next twenty years, Rigsby went through countless surgeries, therapy, drug addiction, party life, seven years of college (and still graduating with no sense of direction in life), a severe case of TBI (traumatic Brain Injury) and depression, debt and no money for bills, in and out of jobs and lawyer cases for settlement issues, and the constant public eye at his “disability.” I think he went through just about everything.

In his own journey, God led him to¬†a place where¬†Rigsby surrendered everything and it was only then that¬†God¬†started to piece together a new course: the unthinkable. Rigsby had always been a runner, but dreams of a future in¬†that seemed impossible; he is now¬†a life showing that nothing is impossible for God.¬†After picking up a few¬†sport related magazines with stories¬†of¬†triathlon athletes, he got a crazy idea–he would participate in a triathlon. He had virtually nothing going¬†for him..not in the¬†physical or financial realm, training or knowledge of what this all entitled…he just knew this was the open door that God was gently leading him through–the chance to use his disabilities to bring God glory for the capability.

As I read, it became obvious that God used ordinary people with big hearts¬†to help Rigsby accomplish his dream: the Hawaiian Ironman triathlon. They saw a need and simply used their time, talents or training skills, connections, hospitality to meet the need. His supporters didn’t¬†act because they wanted to be a huge “inspirational teary-eyed story.” They helped because their thoughts were for Rigsby…they were his “Thinking of you” crew. He couldn’t have achieved his goal on his¬†own. Rigsby now uses his¬†testimony to help others¬†cope with loss and shattered dreams.¬†He doesn’t do it by heroic deeds, but words of encouragement and¬†guidance.

This weekend¬†has left me with many thoughts–I still don’t feel like I¬†have a dream. I still see limits in my life physically, but learned¬†much from Rigsby’s testimony of trusting God with the impossible. I need to be more in prayer for direction–how¬†God can use me (my time and talents) to help¬†others. I don’t want to just say, “Thinking of you.” I want it sincere, with Love.

Life’s most persistent and urgent question is, “What are you doing for others?” -Martin Luther King, Jr.

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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. ūüôā 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

Walking with my Raincoat.

I’m looking for a friend to hold the door

It’s cold outside when I don’t know where to find

A sheltered place secluded from the race

Of this old life

It is rainy here. Gray, misty, windy. Reminds me of this past month. Seems every turn had bad weather.

As I walked out in the downpour with no raincoat

I was soaked down to the bone from head to toe

Without my raincoat, anywhere I may go

I still get wet somehow

And yet right now as I sit and glance out the window…blueish clouds set in a faded yellow sky. I can’t help but smile.

I found a friend. He’s with me to the end.

He promised me that He would not forsake His own

And when a promise never ends

It can only mean one thing…it’s from above

The sky is now pale pink. The reminisce of hope in the storms.

Now I walk out in the downpour with my raincoat

After all is said and done, He’s still the One

With my raincoat, anywhere I may go

I know I’m alright

Reference: “Raincoat.” Downhere. Word Entertainment, 2001.

 

 

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