July 21, 2014 · 10:34 pm

History Tree

This past weekend, I learned something about myself. I am a hypocrite. Yes, gasp and say it ain’t so, but it is true. Here I am…loving all things history, learning, spending hours reading different subjects while piecing timelines together, asking questions, sharing with anyone interested (or offering an open ear) my findings and listing my future endeavors. But after attending a small family reunion, I realized there is so much more history to uncover: my history.

I’ll admit–ancestry is a confusing topic for me if I do not see the names nicely written on their appropriately placed tree branches. I can tell you the names of my grandparents and a few great-grandparents, but they would have a funny story associated alongside them for me to remember properly. Besides knowing the states in which my grandparents were born, college attended, occupation or years of service to our country…I don’t even know that much about my grandparents and that made me sad. Suddenly I want to know what they dreamed of as kids and what they did as chores; what did they do with their friends in high school or what music styles they enjoyed; when did grandpa(s) know that she (grandmas) was the one he would marry? 🙂

I got to spend a few minutes with just grandpa and grandma this past weekend. I had inquired about a hand-sketched picture. It was grandma’s childhood home, the family farm. As I listened (lip-read), I was thankful for the moment…

Future endeavors leave me with questions about all my grandparents and the lives of older generations in the family tree. I am sure my parents, aunts and uncles can help fill in the blanks of my curiosity, as well as my own reading of family albums that have been scrap-booked with loving care. I guess up until now, I never thought to sit and listen to their stories.

I have three sets of grandparents. Each, in their own way, have given me a piece of personal history by living an example of what following Jesus with their whole hearts truly means. If I get one more chance to ask a question, I will ask how they came to know the Lord. Because it is in our roots, my roots. It is a legacy–passed down through the branches with generations to come.

We will not hide them from their children,
but tell to the coming generation
the glorious deeds of the Lord, and his might,
and the wonders that he has done.

Psalm 78:4 ESV

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July 16, 2014 · 11:59 pm

Purple self-pity

Tonight I realized that I have been in a stage of silent self-pity. Getting tired of trying to sort out details for some important weekends ahead, I have tuned out priorities of real life with a much better satisfaction by having my nose in a good book. Escaping.

When I finally went down to paint, I got to thinking and in letting creativity flow, I didn’t realize I was getting purple acrylic everywhere. Mom found me starting clean-up and offered a hand by wiping down the purple handles of my walker.

I bought a nice stationary set yesterday that reads, “Life is a journey not a destination.” I can’t physically escape what may come ahead on the journey–and I am not promised escape either. There will be more days of self-pity and sorrowful “woe-to-me” I am sure, though most of my silence builds until it overflows like tonight’s mess of purple acrylic paint.

The tiny 8×10 was a struggle to paint tonight due to lighting issues and my eyes, yet it was relaxing as I watched the colors blend together, creating an abstract picture. The abstract mesh of my life may not make sense to me, but it does to the One who sees it clearly.

Be still, my soul: the Lord is on thy side.
Bear patiently the cross of grief or pain.
Leave to thy God to order and provide;
In every change, He faithful will remain.
Be still, my soul: thy best, thy heavenly Friend
Through thorny ways leads to a joyful end.

“Be Still, My Soul.” (Hymn.)

Life is struggle. Life is beautiful. Life is a journey.

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July 11, 2014 · 6:27 pm

Double Check

For the fourth time in the past two weeks, Mom and I headed down to the CEI center at Blue Ash (Cincinnati suburb). On the way home today, I think the view and drive was starting to get strenuous and well, boring. To lighten the mood, I suggested the next time we travel down, we play a game–“Like, guess what book I am thinking of!” It definitely lightened the mood. 🙂

Last week, it was the left eye cataract correction on Tuesday, with an immediate follow-up appointment on Wednesday morning. My last left eye check was this past Tuesday, in which the doctor told me that the eye looked really good! To hear this and see that my sight is clear made the day! (I am not certain, but I feel I did better too in reading the letters on the wall.) 🙂

I was born with a lazy left eye. Being a baby, I don’t remember anything, but it seems from stories that up until my eye correction surgery (around 11 months old), I didn’t see clearly. After my surgery, Mom took me outside and I touched every leaf in sight; almost as if there was a whole new world to explore…waiting just for me.

Then came glasses: After my few years of cute, red, circled lenses, I started a new school with new frames. It was not the fact that I was a new student that made me popular; It was the patch that I was required to wear over my right eye, so that my left strengthened. I’m not sure if it worked…when I am tired, my left eye drifts–pictures are evidence. Regardless, every year growing up I would have to take an eye test. Until the seventh grade, when lenses actually could be strong enough in prescriptions for my basic near-sighted blindness, it looked as if I wore goggles. Being about the only kid in elementary school with such spectacles, my peers would ask if they could try them on. “Be very careful,” I would say as I watched them just about fall over when their perfect vision met my blindness.

My eyes reached a plateau around high school, and I only had eye tests so that they could monitor my optic nerves through visual field tests. New glasses frames for college days, and I didn’t have an eye test again until I moved here. All was well until the first time the optic nerves started swelling in 2012. My right eye has been my strong eye. Almost perfect vision, it has carried the weight of both eyes for years. Just like my two blood clots, though in the same leg and same area, the side effects were so vastly different that I didn’t recognize the second clot as a clot. This is exactly the same situation for the nerve swelling. My first experience was a solid black dot in the right eye that would follow my every move. This time, it is the grey “veil” appearance that has changed over the past few weeks since doubling the eye medicine.

Seeming that the “veil” was worsening…there are days when I almost cannot do anything without refocusing my eye or it is as if I am seeing through an appearance like looking out the window through a shade or blinds…at my Tuesday appointment, they scheduled me for a regular visit with my ophthalmologist. After talking all my woes–there are many other observations–he checked my optic nerves and reported that the right nerve was just a bit smaller. Why the nerve is smaller yet then side effects more often and in a larger circumference of the right vision? I am not sure. The good news is that the nerve is not larger! The plan in sight for now is to remain on the twice a day, doubled dose optic nerve medicine, rechecking with a visual field test in late August.

Last night, I woke around 2am…just drifting back to sleep, I started mumbling sorts of prayer requests that came to mind. Then I remember saying, “I don’t want to be blind…” I don’t remember anything after that.

Faith is like being blind; it is like when my eyes are unable to focus in the sunlight and my walker becomes wabbly–and when I am about to stumble, a strong grip from a family or friend holds me in place, Faith holds me in that place…where there is still hope.

“Hope In Sight” by Out of the Grey
(2nd verse) Peace, when it goes
Oh, it leaves me with just one hope
No matter how near or how far
Your light is the brightest star
There is hope at both ends of the telescope tonight

Chorus: There’s hope in sight, hope in sight
If seeing is believing, then call me a believer
Hope in sight, there’s hope in sight
Now that I can see You through the eyes, the eyes of faith

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July 8, 2014 · 6:21 pm

For the Caregivers

I am currently reading the book, Joni & Ken: An Untold Love Story. Prior to its release last year, I think it is a safe assumption to say that when in conversation, if the name, Joni Eareckson Tada, should happen to be mentioned, most anyone could say a few common knowledgeable facts about her life: quadriplegic due to a diving accident as a teen; writes books and draws amazing sketches or paints with her mouth; founded Joni and Friends, in which works with the disabled community throughout the world. Through Joni and Friends, many more around the globe are touched through outreach ministries of the organization, such as Wheels for the World and Joni’s 5-minute radio broadcast aired daily.

I realize that this could just be me. However, I might add another bold assumption that while Joni’s name and story is universally known, her husband’s story is not. In fact, I couldn’t have even told you his first name or what he looked like (not that it matters) or anything about his walk with God and with being married to Joni. So as much as I have enjoyed being deeply encouraged again by Joni’s testimony, I am even more so inclined to Ken’s story.

And I think I know why: because in my life–I am “Joni.” In this book, though I have never been quadriplegic nor have I had breast cancer, I relate to Joni. She speaks of emotions and questions and a longing for Heaven that I understand; It comes with the physical suffering. Still God has given her daily strength, grace, good humor and an abundance of helping hands–Joni responds with praises in all circumstances. In reading the testimonial of the Tada’s marriage and faith in all things, I am seeing God’s hand working in Ken’s life. And in a way, I am seeing my family there too–the caregiver.

There are no words, really, to describe my family. The past twelve years since diagnosis has most likely been just as crazy of a whirlwind roller-coaster ride for them as it has been for me. For me, it has taken years to finally release the guilt, comes with the likeness of a heavy disease, that I am not a burden…not necessarily “me,” but the extraness, expense, inconvenience of it all. It effects everyone. (I sometimes wonder if Joni has ever experienced this same guilt feeling?)

Over the past few months of physical changes, I realized the once-removed guilt thoughts had returned. I am in process of starting to depend on care from others more than I ever had before. It has been humbling and frustrating and definitely an area in my life in which God is working with my stubbornness in just simply letting go and asking for help when needed. What has come to mind in this reading, thinking of caregivers is that it probably can be just as frustrating watching someone fight so hard against simply asking for help. I just smiled to think of the moments when I am trying to open something in the kitchen and after many (many) minutes, Mom will approach and I turn feeling half-defeated (pride)/half in gratitude for her presence as I hand her what I cannot open. “Determination,” I told her once. She said she knew…didn’t have to say anything else. 🙂

I’ve never thought of my family in terms as “caregiver.” I had always reserved that title for association with elderly and nursing homes. But my family is my caregivers: they care and they give. So as I finished a chapter in the book two nights ago, I was in thought by a story that happened to Ken. Joni, home recovering from her breast cancer surgery, was relaxing in the living room. Ken decides to use the time to get the patio ready for the upcoming July 4th holiday with friends. Going into the garage, he needed to move the car and as the radio came on, so did a Joni and Friends 5-minute program that he had never heard before. Joni said:

Life is hard for people in wheelchairs…but it’s just as hard when you’re the caregiver. So let me take a minute and pray. I want to pray, not only for you who are listening today who might have a physical disability, but [also] let me pray for the people who help…

Joni & Ken: An Untold Love Story. Ken and Joni Eareckson Tada with Larry Libby. (Zondervan, 2013. pg. 29)

It was then that Ken realized Joni prayed for him. And I sat there…such a simple yet profound gesture on my part in return for my family, my caregivers. Yes, I pray for them, but never talking to God about all that they have done for me…never asking on behalf of their bodies, for continued peace and strength as they continue to help my weakening one. And through this new way of prayer, I hope to see my guilt cease and praise to God in all thing increase.

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July 5, 2014 · 10:22 pm

Round and Round

I never took note of how many circular objects you can encounter in a day. It can start the moment that you get out of bed…for me it is taking my walker (circular handles) to the bathroom and brushing my teeth. Circular toothpaste tube, toothbrush handle…the hair accessories such as mousse, hairspray–I finally resolved my shampoo and conditioner bottles had to contain the pump lid or I didn’t purchase it.

Then you enter the kitchen: cups, retrieving coffee creamers or my water bottle from the refrigerator, medicine bottles (specifically a big container of Miralax that seems to enjoy being dropped to the floor,) my special utensil handles, the coffee pot handle (mugs included) and many food itemed jars or containers. Let’s not forget to mention food…even just a few minutes ago it was my sweet potato. You have handles on the stair railings, my painting tubes and paintbrushes, and even the mouse that is battery connected to my laptop. This is just a few things in my house…the list can go on, even down to the Communion cups at church (someday it will be impossible for me to hold one of those without spilling!)

Psalm 150 describes praise to God: praise Him in all things and for all things. You can praise God with your life in many ways, but the psalmist goes on to describe musical instruments, in which can be a mode of how you make a joyful noise to the Lord (in praise): verses 3-6

Praise him with trumpet sound;
praise him with lute and harp!
Praise him with tambourine and dance;
praise him with strings and pipe!
Praise him with sounding cymbals;
praise him with loud clashing cymbals!
Let everything that has breath praise the Lord!
Praise the Lord!

I’ve never been one to consider clanging, or loud clashing, of cymbals to be melodious. And it is not my intentions to have problems grasping circular objects either. It comes as the numbness in the hands increases. Numbness makes it not only weak in grasp, but my fingers to be slippery as well. [The same for my feet: if I am barefoot and standing on carpet, my feet will slide. It is very strange.] In all this, there are some days when the hands just can’t seem to get it right and I spend most of it sounding like a parade of clanging cymbals.

I think by now my parents are used to the excess noise. However, there are a few times in the mornings where they check in to reaffirm that all is well. In these cases, especially the ones where my hands can’t seem to hold the mousse or hairspray bottles, I think of the Muppet’s character–Dr. Teeth. In Jim Henson’s The Muppet Movie (1979), Fozzy Bear and Kermit the Frog first meet the Electric Mayhem in a Presbyterian church. In their rock and roll fashion, the band doesn’t see the visitors until their song is over, to then Dr. Teeth acknowledges: “Our gentle morning melodies has attracted wandering admirers.” Some morning, I might have to quote this. 🙂

Because I am deaf, I don’t hear the volume of loudness or crashing dialects when items fall out of my hands. But since I have an imagination, I perceive that they do not all sound alike based on heaviness and materiel make. In saying such, I was startled to find that my “morning melodies” did not cause Mom’s appearance to the kitchen at a faster rate. In dropping items, it normal to have my inner independent pride state phrases as, “I got it!” so it is known that I am fine. If Mom heard the noise, she had every right to assume that I had the situation controllable…which in this one, I did not.

I had been rummaging through my pantry shelf when I discovered a hidden jar of instant decaf coffee pushed to the deepest back corner. Retrieving it, I picked it up (with the right hand) by the lid (Yes, a very silly error on my part!) About middle to the shelf opening I reach my left hand in to help hold the bottom of the jar and fully retrieve it. All happening so quickly, my right hand slips and in doing so, the lid pops open. Trying to save a mess, I fumble with the open jar, but alas, it crashes down–taking with it the remains of instant decaf coffee beans. It just about covered the food and picnic style items we store there on the last few shelves of the pantry. Somehow it got a circular coffee bean slogan on my shirt and all over the floor as the jar (which resemble glass) finally touches ground. (Did I mention that morning I was barefoot?)

I stood, did a little “gasp” then muttered,”Oops,” with a little giggle–though at this point I am contemplating two things: Mom’s reaction and how I am going to clean the mess. My phone was with my walker a few feet over, so I could not text Mom. I didn’t think the story was one for a Lifeline call, so I didn’t press the button. I wouldn’t want to start their morning with this kind of conversation:

Operator-“Melinda? Are you okay?”

“Yeah. I just spilled my coffee.”

Still no Mom, but I was still apprehending the conditions and not really trying harder to get her attention. I suppose I could have just tried blurting out her name, but there I stood, motionless and bewildered. And that’s how Mom finds me when she finally entered the kitchen. One look at me and she bursts into laughter. Laughter…it puts me at ease and I can finally laugh myself without guilty thoughts of finding the situation a little hilarious. Mom gets the vacuum cleaner and the clean up begins; she didn’t inquire about the happenings, though I told her the story anyway.

As much as I try my best, there are some days when my body just can’t seem to get things right. It resembles morning melodies much like a clashing cymbal, so vastly different from the boldness of trumpets, the soothing lure and harp, or graceful dancers that I could desire it to be. And while everything around me clashes simultaneously, I stand motionless, bewildered as if apprehending my current and future state for the first time. But I am not. It has been years of journeying to be able to reaffirm that in all things, God has something greater in sight; to say this doesn’t make me a hero, it makes me vulnerable..because all I currently see is the remains of spilled instant decaf coffee.

Praise isn’t just the simple morning melodies. It’s a trust–and every time a little more of what remains is taken, God says, “Do you trust me?” It is now up to me to decide.

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July 5, 2014 · 12:54 pm

Beauty Rain

DSCN3713 Sunset in Rain.

A few nights ago, we had an evening of thunder, lightning and heavy rains. I was typing at the dining room table and like any other storm, I simply just unplugged my laptop and ignored the commotion outside (minus a few commented phrases– “Wow, that was a bright lightning flash!”) My eyes finally needed a break, so I sat back in my chair and gazed out the window.  By this time, the storm had calmed and the evening sunset was attempting to shine through the grey.

Beauty Rain…when the strength of light and color emerges from the deep of dark greys.

Don’t doubt in the dark what God has show you in the light.

 https://www.etsy.com/shop/BrushstrokesbyMel

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July 2, 2014 · 6:47 pm

Greater Expectations

If, by chance, my high school English teacher reads this particular blog entry, I feel inclined to start with a sincere note of appreciation to her outstanding tutelage in the area of classic literature. It was in her class that I first discovered (for as smart as I claimed fame to be), I was clueless when it came to Shakespeare; appalled at the darkness of Edgar Alan Poe’s works; wanted justice after reading George Orwell’s Animal Farm; and thought there was no greater written soap opera than that of F. Scott Fitzgerald’s The Great Gatsby. We encountered The Grapes of Wrath, sections of The Canterbury Tales, and most of all, works of the highly esteemed, Charles Dickens.

I like to give any read I pick up a decent try. There are the books that are enjoyable (say 3 of 5 stars); books that are worth discussing and sharing the title along to your friends (say 4 of 5 stars); and books that are all of the previous, plus the fact that you instantly want to reread the book, it is always in thought someway during the day and you take part of the action of plot while dreaming at night. Yes, a true 5 of 5 read can affect one in this manner (true story!) Sad to report, a devastating read can trigger the opposite of all joyous 5 of 5 characteristics single-handedly. For me, that took place my freshman year of high school. The novel: Great Expectations by Charles Dickens. Maybe it is because Dickens already happened to be a favorite author of mine at the time, that I expected to enjoy the novel as I had A Tale of Two Cities. (Of course, growing up, nothing was considered more classic and traditional in our house at Christmas than A Christmas Carol, especially if Jim Henson Muppets were involved. 🙂 ) Although my English teacher lectured and presented the novel with great enthusiasm, Great Expectations is placed on my “Abandoned: never-to-read-again” shelf in my mental library.

The more I think of expectations, the more funny it seems. We cling to expectations…they are the wins and losses. We run back and forth between the two–expectations must be balanced between the positive and the negative, much like a teeter-totter. When you have no expectations, you can find yourself thrust into a situation where you are inclined to making expectations on a whim. And for me, I did just that very thing yesterday after my cataract correction surgery on my left eye.

Eye surgery is strange; it is vastly different than other surgeries I have encountered. At one point in time, though highly on my anesthesia about ready to be wheeled in the surgery room, I remember thinking, “How am I going to blog about this?” 🙂 The preparation meant loads of different eye drops, getting my IV in place and vitals completed. Towards the last few minutes, the nurse squirted in the final eye drops and I was told to close my eyes. When she left the room, she shut off the lights. I fell asleep.

It was a great sleep…like the deep slumber you enjoy between smacking the snooze button vicariously on your alarm clock in the morning. I had no snooze button, but was quickly awakened when the nurses came back in the room and turned on the lights. Momentarily blinded by brightness, I read Mom’s “I love you” signed hand and they start wheeling me out in the hall. Now, I get confused easily, especially when it comes to reading lips dealing with medical things through eyes such as mine (that is my excuse…truth is I just miss a lot and find out about it later.) A few examples: I thought the surgery would take long (my expectation), but it really was only about twenty minutes. I also knew in my head that I was not going to be put to sleep, but got confused when they put the tubes up my nose (Mom told me later that it was oxygen.)

This all started to make better sense when she told me this, because on the drive home I started talking about the fact that I was “asleep” yet saw the light and things moving around my eye. The light was so bright that up until I left the hospital everything in that eye was orange. 🙂 We were given the instructions for the continuing eye drops at home and they covered my left glasses lens so my eye would not be strained for the day.

I had greater expectations for recovery in terms of time. I expected fast; indeed, the initial results are fast! Immediately after surgery, though temporarily orange, I could see clearly. No more cataract, no more haze! 🙂 But I also learned full recovery takes time. July has just begun. Among everything else in schedule, I have the entire month filled with eye drops three times a day and letting my eye adjust before I can go to a regular eye doctor for a new prescription of a glasses lens for the left eye. My expectations–frustrated!!!, but I can bring it back to balance–as always–by offering praise and thanksgiving, for the ability to see and the blessings from those around me who are the helping hands in my recovery.

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June 29, 2014 · 11:59 pm

Seek (It’s always been there)

I think I made a discovery. If it’s not obvious yet, sometimes it takes me a while to piece together clues within the day-to-day activities before it just dawns on me what a surreal possibility could be indeed the happening (in accordance to the repetition clues acted or observed.) As far as my discovery, it is both action on my part first noted by a frustrated, accumulated observation with prior knowledge and experience.

Discovery–visual field tests do not lie. Let me re-emphasize that point: where your visual field test shows black on the report, you have a blind spot. You didn’t see the light flash, so you didn’t click the button, so it shows truthfulness in the results; It is no game boy stimulation. Last thing you want is to read is a “Game Over!” sign. Knowing that I just had a visual field test and even know (previously discussed) where my vision has worsened due to the optic nerve swelling, one could assume that I would note quickly why I was (or can) get increasingly frustrated while using my laptop or parent’s computer. Light sensitivity is now more minimal annoyance as I found a position at the dining room table that suits best…yet even now my right eye is re-adjusting and re-focusing. Some days are just better than others.

My discovery came after an evening of trying to write a letter in Word doc form with a few pictures added at the bottom for my grandparents. I wanted to tell them about the NF Walk and what we (me, Tasha, Chelsea) had done over the weekend. I love writing fun update letters like this to my grandparents! After me and Mom returned from the CO trip, I had done the same thing, but it was not like this past week’s experience. It proves the visual field test true.

The problem of my discovery: my mouse cursor point (in sight on-screen) will just disappear at certain areas of the screen. I had already, months ago, changed my arrow appearance to black and had enlarged it a little, so it should be easily seen. Last week especially, I would be using my computer and mouse–it would disappear. Frantic sometimes if I am in the middle of important work, otherwise, I usually let out my “Mel is frustrated, yet determined to finish!” grunts and continue to make motions with my mouse to see where the arrow causes pop-up action. It’s like playing hide-and-seek.

In my annual making the evening tea ritual, my brain starts to process what has been happening. Mom walks in the kitchen and I bluntly state my profound discovery: “My cursor and mouse arrow disappear in the lower middle section of the screen.” Yep, profound…because at that instant I continued my ramblings in orderly sense–perfectly clear sense: My swollen optic nerves worsened my visual field test blind spot in the right eye at this area, but I have also noticed that vision overlaps–so where it is a blind spot, it is also cataract hazy from the left eye. It is a mind-boggling scenario.

Having this blind spot reminds me of my walk with God. I don’t believe that God hides from me..His presence is always beside me. However, I think that sometimes God chooses not to reveal Himself as a strengthening of faith. When I lose my cursor or mouse arrow, although frustrated, I become more alert to finding even the smallest motion on-screen that signifies where my displaced subject awaits. When I lose sight of what God is doing in my life, I get panicky and frustrated. Seeking Him whole-heartedly, even the smallest motions of faith will indicate which direction I am to follow. And when God chooses to reveal Himself again, it is too wondrous to comprehend.

Amazing Grace, how sweet the sound,
That saved a wretch like me….
I once was lost, but now am found,
Was blind, but now, I see.

John Newton

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June 24, 2014 · 10:42 pm

NF Walk–A Mile in Mel’s Shoes

This past weekend marked the NF Walk that took place in Cincinnati. Being my second year attending, it had both similarities and differences: Same park, same 2-mile trail, same purpose–to raise awareness of the disease (NF1, NF2 and Schwannomatosis) and fund raise for The Children’s Tumor Foundation, in order that the research for new treatments may continue. Like the year before, the presence of Storm Troopers resulted in group pictures and rounds of high fives. Except this year, as the Storm Trooper started talking to me, I just looked at him and said nicely, “I have no idea what you are saying, because I can’t read your lips.” Maybe it is because he is used to little children “oohh, Storm Trooper!” responses, I think my comment caught him by surprise as I noted the way that he tilted his head and then looked at my friend, Tasha. haha. Not much he could do there to fix the situation, but he did talk a bit more (I assumed) about this as he was making hand motions around his “still lips.” It was kind of obvious that most people don’t small talk to Storm Troopers in this way. None-the-less, after our many pictures, he ventured to other participants and we got ready to start the walk with the others.

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Last year, with my parents gone to Colorado for a conference, my team–“We Walk With Mel,” consisted of my sisters Marcia, Melissa (brother-in-law David) and my aunt/uncle who drove up from NC as a surprise! The Children’s Tumor Foundation hosts many walks throughout the summer in different major cities. Last year, there was a walk in Denver in the early Fall. Unable to physically attend, I was there in spirit as my childhood friend, Tasha, teamed with sister Megan and roommate from college, Calli, to form their own team in my honor to walk. It was very special to see the pictures of friends I grew up with or went to college with there in Denver walking the course for the CTF. I am very humbled and blessed by all the support given both last year and this year for this cause. Thank you.

This year was exciting, because the team, “A Mile in Mel’s Shoes,” had ten people! My parents, Melissa and David, my friend Tracy and her kids–Seth and Lexi–and this year, Tasha joined me here on the walk with our other childhood friend, Chelsea. What a beautiful day it turned out to be, even with my initial plans of pushing the wheelchair until I needed rest flopped. Sitting the whole two miles was not frustrating or embarrassing; for the first time, I did not feel like I was a burden, even though I weigh 150 lbs. and it was HOT and humid. My family and friends took turns pushing me, with the hills and lows of the trail–they led me to the very end of the course and cheered with me upon finishing.

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Team “A Mile in Mel’s Shoes” was physical evidence that no matter what you are living through, those who love and support you will see you to the end. Likewise, the team is surrounded by those who were present in spirit…praying and contributing financially. When I think of all those in my life, I am seeing the fullness of how one life reaches to another: Some may have to cheer to you from the side-lines; some may have to walk ahead and when you need them, they call out to you offering advice based on their own journey before yours. And still others may just walk beside you: They cry when you cry, laugh when you laugh, or carry you when you don’t have the strength to do it on your own. In my own journey living with NF2, I have been surrounded by these all in their own ways, in God’s timing. And I am in awe of God’s goodness in this, because I could never in any wildest hopes or dreams, make it on my own.

No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you.

John 15:15, ESV

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June 24, 2014 · 2:56 pm

For when I will see clearly, again…

Not even a month had passed since I last saw the surgeon ophthalmologist regarding my cataracts. It was during that middle portion of May that the first correction surgery for the left eye was scheduled for July 1st. It seemed as such a long wait! And yet here we are..the surgery proceeding as planned–next week.

By now, it shouldn’t be a surprise (much) when I next mention that during the past month, my right eye has changed. Like any other change, it started slowly. The cataracts have already effected my vision as far as the blurry haze off-setting my balance and deepening the light sensitivity issue. I have struggled with light in darkness situations regarding the left eye (born with a lazy eye) since we moved here; I had made the decision to stop evening driving shortly after the move. My left eye just could not handle the passing car lights anymore. It was different in Denver: cities know no darkness.

If you recall, I have–at one point in time shortly too after the move–had swelling on the optic nerves, resulting in seeing black spots. As it progressed to larger dots, I saw the ophthalmologist–who presently still is my eye doctor–and he prescribed the medicine that causes carbonated drinks to taste metallic. Not complaining, because as of the past two years, the medicine has helped keep the optic nerves stable. (On a side note: unlike other individuals with NF2, I do not have tumors on my optic nerves.)

What then causes the optic nerves to swell? “Tumors,” would come a reply. Although it’s almost like a trick question, because there is no definite cause tumor in sight (at least for me, since I have no tumors on the optic nerves growing with obviousness alarm.)  My body contains many, many, many tumors…we don’t even know how many to be exact. With many tumors growing at the same time, it is difficult to know which tumor causes what side effect. Even when tumors on the MRI scans show “no growth,” but I have increasing side effects (numbness, intestine problems, weakness in balance and strength), we still don’t exactly know what tumor is causing the problem.

When my right eye started changing about a month ago, different to that of the cataract haze, I didn’t think it to be an optic nerve problem. It started here and there, an intense darker fuzz in the eye when it caught a time of light sensitivity causing me to have to pause longer to re-adjust my eye. It only lasted a few seconds at first, but I still got to saying, “Hold on…eyes adjusting!”–so that way the person I was talking to understood that I was no longer lip-reading, but squint focusing back to normal sight.

After the trip to Colorado, the problem started increasing more times a day and I noticed that instead of seeing the typical cataract haze, I was now seeing a tad darker tint of everything. Trying to explain this situation, Mom suggests: “Like a veil?” Mom is so good with words. “Yes! Like a veil!” It still is the hardest situation to explain, but it is not very difficult to explain when you experience seeing in “tunnel vision.” And that is when Mom called the ophthalmologist office at the surgical CEI center where they set up an appointment last week in order to see what is going on with my eyes, based off my rambling adjective descriptions of side effects.

Without even dilating my eyes, the ophthalmologist on the emergency appointment floor noted that the optic nerve on the right eye is more swollen. I don’t understand how they “measure” the growth, but he mentioned that (after taking the density) it had gone from a “2” to around a “3 or 4.” All I know is that this means it grew. The doctor asked if I had any questions–which I didn’t–and as we left, the office there set an appointment for the following day with my main ophthalmologist. Bright and early the next morning, Mom and I headed back to Cincinnati.

I ended up taking another visual field test, even though I had just been in April for an appointment. The hardest part of the test is holding the clicker; I ended in holding it in my hands much like a tiny game boy remote, but grasping the cord with my right hand so I wouldn’t drop it. 🙂 Considering the eye condition, I was a bit shocked when the visual fields showed smaller-than-expected change. The outer and upper rims are areas where changes occurred in both eyes, but the inner middle to bottom portion of my right eye is where you see the most growth of blackness on the chart.

I did have a few questions for my doctor, and then we discussed the next steps. As of right now, he doubled my eye medicine dose per day. Change may occur slowly–so it is hoped that by my follow-up appointment on August 20th that there will have been positive changes and stable optic nerves. I do have one other option for helping release the pressure on the nerve, but it is a small surgery on the outer lining of the nerve; and even though the nerve is not touched, I am preferring no surgery.

This past month…especially past two weeks..has been a test of patience. I get frustrated with my eyes. “I can’t see!!!!” It is becoming my new “Good grief” slogan; but the truth is that I can see…just not how it used to be. And until the day when my sight returns to its former self, I just have to keep focusing on the Lord. I can’t deny that fearful thoughts of blindness has already crossed my mind, but focusing on them causes me to see life through tunnel vision. Eyes of faith oust the darkness and shines the light of hope in its place.

God, my God, I cry out:
Your beloved needs You now
God, be near; calm my fear
And take my doubt

Your kindness is what pulls me up
Your love is all that draws me in

[Chorus]
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

I Will Lift My Eyes.” Bebo Norman. Between the Dreaming and the Coming True. 2006.

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