Category Archives: Adjusting to NF2

August 30, 2014 · 4:55 pm

Infested

It all started Tuesday night a month ago, when I bumped my leg getting out of the shower, in which caused a deep gash on my left shin. A little background information might help explain the situation: It wasn’t my first time hitting my leg on the bathtub sides. In fact, both shins were already portraying an array of nicely blended shades of black and blue that had already been there for some time, due to the longer healing process in taking blood thinner pills. Add the delicacy of the skin, due to long-term use of steroids and complete numbness in the left leg, often I don’t know where most of my bruises come from–except the ones on the front shins.

I often think that I am un-observant. Or maybe things get so routine that it just doesn’t phase the mind that something is different. Such is the case on that day when I was exiting the bathtub. My bathtub already has higher-than-normal siding, not making it as an excuse, but my legs just can’t quite ever make it over the hurdles of a bathtub without contact, unless I am making a “leap in the air” look…which I am sure looks different in my mind than real life. I never ran track. Or hurdles.

My leg that day hit the rim, but I didn’t notice…actually, because it hit the heaviest portion of the bruises, I can’t even remember feeling it. It wasn’t until I noted scarlet red all over my new bathmat that I realized I had been wounded. Good thing I hadn’t ventured off the bathmat yet. I couldn’t reach the ever-present band-aid supply in my counter drawers by the sink, so I made myself presentable for assistance and then pushed my Lifeline button.

After several boxes of large band aids and keeping the wound as cleaned and protected as possible, it still was not healing properly. When I went to Children’s last week, doctors looked at the wound and my ankle as a redness and swelling of the skin under the actual gash had started. We set an appointment to see the Wound Team on September 9th, went to Cleveland for the weekend and started the new week. Then came Tuesday evening.

It hadn’t been until Tuesday that the redness and lower swelled ankle really started to hurt. That evening as Dad was helping me, he was carefully wiping the area with a warm washcloth before applying the new band-aid on the actual wound; it felt like pins and needles!! The next day was no better and by Thursday morning, Mom called my Nurse Practitioner at Children’s. I was just ending my early morning Skype chat with my friend when Mom comes in with a note saying that Children’s wanted me to their ER as soon as we could get there–more along the hopefulness that we could figure out the leg problem and still get me to my CEI appointment by 2:30. Like a two-in-one day. It’s not possible.

Already being set to go for the day, I just quickly put on my shoes, grab the rest of my half-eaten apple and a Fiber One streusel bar while Mom fills my Tervis with my morning coffee. Off we go. At the ER, we get into a room…do some waiting, watch an episode of Bonanza, talk with a few different doctors, more waiting and I fall asleep in my chair. Mom had already called CEI and explained the situation, and they kindly rescheduled my appointment to the following day (yesterday.)

It is in these situations that you learn patience; after much waiting, I got the ultrasound done one my left leg to ensure there was no blood clot problems. The good news is that there is no blood clot problems! 🙂 What the results show is that it is Cellulitis. It’s a skin infection. Germs, even the tiniest, enter through the wound and start to spread as an infection: infested…seems so gross. It’s not like I wasn’t keeping my hygiene or things like this, it just happened. But getting the proper antibiotics now will, in hopes, keep it from continuing to spread. It can get into the blood stream or the bones and that is something not wanted or needed at the moment!

Please pray this infection heals enough by next week, as timing of the eye surgery is mostly dependent on this…

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August 27, 2014 · 11:24 am

Privacy, Patience, Public Restrooms

Don’t worry, this post is still G-rated, but the more I thought about how to go about this, the more I wanted to give you a better understanding of what a day in the life of Mel can present. Not that I am special; I just require a new format of special needs in certain areas of daily life.

I’ve talked about things before, especially during last Fall’s sessions of Occupational Therapy. A few: I have fancy big pens I use for “writing,” special handles on my silverware, plastic tableware to eat from rather than heavy plates and bowls, reusable straws to help when I drink, a shower chair and Dad attached a new, secure handle for me when I get in and out of the shower.

Out of all the additions, there is one–probably most significant–that I neglected in thankfulness and took for granted. Until I could not physically function on my own. Truly, if it were not this past weekend’s experience, I would still be living in the same denial of this helping hand: raised handles on my toilet seat.

It’s like anywhere else I sit–the couch, kitchen table or ca seat, I cannot physically stand without the use of my upper body and arms pushing against something. My legs and ankles are on the down-slide, but the fact I still get out of bed on my own each day is a miracle in itself.

So this past weekend, I find myself in a predicament: the toilet is too low to the floor and is next to the bathtub, unlike most others where it is near a wall or the sink/counter. The tub is about the same height at the toilet…too low to push from and my walker handles are too high. I am stuck. Humiliating and humbling, every time that I used the restroom, either my Mom or sister had to help me stand.

You know, I’ve been to Greece. At Phillipi, most of the ruins were still in good form: doors, stairs and walls of the First-century era. The main city entry and stone are original, making it slippery. We saw the amphitheater, the gladiator entries, and the hole in the ground that they termed as a prison. And we saw the public restrooms–

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We’ve come a long way from this picture–much to be thankful for in privacy and patience. But this is what my life with NF2 is becoming: a special need that could one day require more assistance apart from my family’s helping hands. For now, there are no words I can express to my family for their sacrifices in those needs; and there are no words I can express to God for providing in those needs. It is learning humbleness, that I see the Love of God shine in others…and it’s contagious.

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August 25, 2014 · 2:30 pm

In a few words…

Normally, I like to give my MRI results in a full detailed account. However,in thinking of last week, the past few weeks, the past few months of complexity–I just want to tell you simple. In a few words…

My parents told me the results before my eye appointment, because I would be seeing my neuro-ophthalmologist and would need to discuss my questions and tell of my changes in the right eye vision. I suppose too, my parents wanted to tell me themselves and not have it come to me as a shock or surprise. It didn’t. “I saw this coming,” I told them. And even though it didn’t make it any easier, the fact that I knew in gut-feeling that my scans would reveal something, somehow made it easier to comprehend.

“There’s good news and bad news,” Dad begins. The good news: MRI of the spine showed stable. That is good news; although I have had more weakness in my legs, I probably would have been shocked if there was growth, because the lower half of my body (besides intense bruising on the legs from bumping into things) has not been a problem.

The bad news is that most of the tumors (besides the ones on the acoustic nerves, which wouldn’t matter to me since I am deaf already anyway) have grown…some significantly, some in areas by the skull that are likely causing pressure and the effects seen in my curling right hand, weaker left hand and numbness in the face/neck area adding to the choking, chewing and voice changes too.

These changes are slower, more “normal” to me to adapt to in everyday as compared to the right eye vision. The scans showed that there is a tumor growing next to the right optic nerve. “I am trying to see God’s goodness in all this,” I type to my best friend. At the time, I didn’t see it, but now I catch a glimpse…the fact that the tumor is next to the nerve and not on the nerve, is goodness.

This is what has been causing the grey veil and blind spots in the right eye. I don’t know much about eyes–I truly regret not taking Anatomy in high school or college, but there’s nothing I can do about that now; so I learn from my physical woes. I was told that your optic nerve is protected by a sheath, in which my right sheath is very swollen (thus pressure on the nerve.) I meet a surgeon on Thursday to discuss the surgery to release that pressure in hopes it helps the vision.

That is my last and only option. For the remaining tumors, I have no treatment options. “Your tumors will continue to grow,” my doctor tells me. We have had the discussion several times and I know that he and the rest of the team of my physicians feel helpless in the situation. He expresses his concerns on my current physical state and then asks, “What can we do to help, for you and your family?” Minutes before, I had just been in a state of tears and floods of emotions. Without a moment’s hesitation, I reply, “Well, you can start by getting me a limo and a personal chauffeur. That would help my Mom.” It made for good laughs; it released pressure.

I have not been abandoned though–I do have one more option: “Do you trust Me?” As I sat at the kitchen table that night with my parents, I started asking my questions as if I had already gone blind. My biggest was communication: I’m already deaf and couldn’t learn braille with my hands being so numb–was what I reasoned. How will we do this? Dad gets up and comes to my chair, gives me a bug hug and says, “Like this.”

It’s the picture of trust…”Do you trust Me?” Because in good news or bad news, God holds me.

Hold me Jesus ’cause I’m shaking like a leaf

You have been King of my glory

Won’t You  be my Prince of Peace

~Rich Mullins

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August 22, 2014 · 10:48 pm

The Blob

Yesterday had me feeling like a blob. There’s nothing worse than feeling like a blob–I had entered the room with great defense, but left like a weak and helpless one. Being a blob in your mind will have you wallow in this way. I put my brain on mental stand-by as we made our way to the car and dozed while Mom and Dad made their way in construction and traffic to the nearest Cracker Barrel.

Comfort food, I started to regain composure. I can’t say it was back to Mel, but I was trying, although I just wanted to be home. That was comfort. At home I make tea and start a new book on the library app that I have downloaded on my Nook. A black background and white words. It’s like a photo negative effect and I read the text so clearly.

It reflected my day completely. My inner blob was my defense. Turn the room of people around like viewing from a negative in the light: and see the defense signs from the bleachers, from loved ones in the crowd; those around cheering me on, those around working ideas to keep me going, those around hindering my path that leads to the blob.

The Blob. It’s pain, suffering, confusion, justification, frustration and fear, selfishness and comfort, unfocused purpose. It’s the complete negative (literal meaning) of the Fruit of the Spirit.

The blob in me comes and goes as I embrace the newness of realty: “Man is like a breath; his days are like a passing shadow,” Psalm 144:4. It is not easy lowering your defenses..but it is not a weakness either. In living, I am learning this…

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August 21, 2014 · 1:22 am

Secret Codes

When we were little, my sisters and I played “Spy.” If you have never been associated with this game, allow me to explain. It all begins with a sheet of wide-ruled paper and a wooden No. 2 pencil that was usually used for math class, hence, it lacks the eraser. After spending half of your spy time by creating a detailed floor plan of the downstairs areas, especially the kitchen, the game has now begun.

It’s a parallel to hide-and-seek with follow-the-leader. The objective is to pinpoint the non-playing family members and spy on them without being seen or heard. Melissa, being the eldest and cunning, always seemed to end the spying eye on her at first notice; Mom just played along, even when we giggled or accidentally moved the table chairs while trying to knee past them on the tile floor. It was the era of Carmen Sandiego and our games of Spy just happened to help us solve our curiosity mysteries.

Fast forward to junior high days–it was in these days that I learned two fundamental traits that would guide me as I started losing my hearing in the end of eighth grade: sign language and lip-reading. I first learned sign language from Melissa my sixth grade year, as she had learned a song at summer camp. That next summer meant that I was old enough to attend church camp as well, but I did not take the signing class–my friends did, however, and that year I learned, “I Can Only Imagine.” My junior year of high school, I took a community ASL class with my Dad; I had been self-teaching myself from a few signing books I purchased at the local college, but the course helped increase my vocabulary.

Until my lip-reading rehabilitation course during my first rounds of radiation in 2002, I never realized how much I was already reading. I sometimes get asked when I first started, and I honestly don’t know. I do remember once getting a talk from Mom after getting into trouble, in which I read her lips…but I always thought that may have resulted from a guilty conscience rather than hearing loss. 🙂

We may have no longer played our games of Spy, but we sisters developed in the junior high years a code. A secret code, and we would relay this message to each other in our times of need: SPR!! Yes, these three letters were part of the foundation to my lip-reading career. Best part was that we could say them to each other from across the dining room table or Sunday School room. The message was simple, so loud and clear: Secret Private Room. It usually was the closet, but some of our best secrets and cases solved were a result of the SPR!

Fast forward to the present day: I no longer play Spy or hold SPR meetings in my closet, but I do enjoy the game of CLUE. My college roommate and friend from Denver days surprised me with a visit on the weekend of the art show! Considering my past history in solving mysteries, one would think I would have not been so confused at the situation, when Callista taps my shoulder and I look up to see her smiley face. I was at the kitchen table reading, so I had my glasses off; Mom had just been discussing the new neighbors, resulting in my next sentence understanding of who I portray Callista to be in my mind: “You look like my roommate from college.” The lip-reading, because in my mind I know it is Calista, but I think it’s the new neighbor–it just threw me off completely.

“Hold on a sec and let me get my glasses on,” thinking of how I don’t like new introductions as I am terrible at names. I turn back around, see Kate and glance back at Callista. “What are you doing here?” It finally settles in–yes, these are my friends and they came to see me. 🙂 Later that night, we played CLUE. My hand of cards was not the greatest. I had all characters and two rooms, no weapon options. We play a few rounds and I had two characters left–still no weapons marked and only one room (besides my own) marked off the choices. Deciding to subject my own character to checks and balances, I place him in the nearest room and random grab a choice weapon.

“I think it is Mr. Plumb, in the kitchen with a candlestick.” Kate had no cards, Callista had no cards; they look at me like I am pure genius. “It was just a guess,” I had to assure them. Back came the conversations of Carmen Sandiego and I mentioned the show Sue Thomas, F.B.I.–inspired by the true story of Sue Thomas, who solved crimes by lip-reading: a deaf F.B.I. agent.

I must have been inspired by all these memories when it came to Monday’s MRI. Being an older, complicated body patient, my scans usually get scheduled for the last of the day. Monday was no exception. I was to report by 5pm for the preparations (which is translated as paperwork and questions); the scans starting at 5:30. I am comfortable with the long scans–usually they are my nap time when scheduled for earlier in the day. With this scan scheduled late, I knew if I napped, I would not sleep when I got home. Selecting my movie, I toyed with the Lord of the Rings, but once I start one–I must watch them ALL. To escape this, I selected Star Wars V: The Empire Strikes Back.

They get me settled in with the head-gear, strap my arms in, blanket and knee lifter; I am all ready for the scan and movie, although the goggles pressed hard into my nose. The opening overture and text starts–I find that looking at the screen with my left eye is actually blurred. So I allow that eye a break, close it, and view the movie from my right…aside from color differences, I saw things pretty normal considering its condition.

We’re still the beginning parts of the movie: Rebel forces are fighting the Empire on the ice planet Hoth and aside from that action, there are a few scenes with Darth Vader and his top commanders on his spaceship. It was right at the moment when the light, snowy planet Hoth gets cut off to the scene of the darkness of the spaceship that I am thinking I am seeing a secret code! You’ve heard of it before–movies will flash messages to the audience: “Buy popcorn.” Or something to that extent.

As the camera zooms in on the outer of the spaceship, I am seeing words, in what I think is the little lights from the inner of the spaceship. All excited, I start squinting to decipher the code, thinking, “Wow. My right eye problems give me a chance to see things different!” I start to see it is in sentences:

“This movie is 2 and a half hours long….” It goes on to tell me that it is not good for my eyes and that I should shut it off and sleep. But just in case I still wanted to view the movie,”Press [*].” So much for codes-Luke hadn’t even gone to Dagobah to find Yoda yet and it wants me to sleep! Thinking that my eye had recently gained some sort of cool lens power made me laugh.

In life, there are secrets and mysteries. Some will be revealed, some will not. Instead of solving them, I am learning to live in them.

Call to me and I will answer you, and will tell you great and hidden things that you have not known.

Jeremiah 33:3

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August 12, 2014 · 11:59 pm

I’m Confused

If you and I were sitting at a table, just talking about life and letting conversation flow, I would hope like any other normal conversation, there would be transition sentences to help me follow the train of thoughts of topics at hand. Maybe there is too much of a writer’s dream in that thought. But maybe that is my problem–I read too deeply into things; and my lip-reading often leaves my decoding of transitional phrases not what the transition is even about..so off sometime that my Dad signed to me (after patiently trying to help me understand), ” I’m changing the subject.”

“So, we’re not talking about writing letters anymore?”

“No.”

Such clarity, simple change. After yesterday…I could have used a little clarity, because what I have been living with over the past two or so months is anything but simple change. My Life with NF2 is appropriately labeled more as, My Life is so Confused.

As you know, my summer started with the increasing cataract hazy blur. Add the grey veil in the right eye, correction surgery on the left eye, endless eye drops, full and well recovery for the left eye while the right eye worsens…it has reached a point where I feel more blind with my glasses on than off; and I am already as blind as a bat anyway. Except even bats are better in knowing their surroundings–they see as a result of high pitch sound waves and the echo replies. High pitch frequencies were the first part of my hearing to diminish. So, me: no hearing (which really is not all that unbearable)–but it only becomes totally unbearable when you cannot see or when you see double, all in which is now me.

I would venture to say that 98% of this perpetual blindness is the current swollen right optic nerve. My MRI is on Monday, ophthalmologist appointment on Wednesday and Children’s Hospital on Thursday; next week is going to be a long week. But I have questions and ready for more answers, regardless of what the scans show. When I have my glasses off, my left eye does the controlling, though I try to refrain from zoning my right eye out entirely and keep it functioning straight ahead. Most often though, when I lip-read, write or even type…my right eye acts like a lazy eye. It is becoming a bad habit.

In preparing for the art show, I even painted in this fashion:  one eye and one hand. No glasses.

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When we were setting the dates for my eye appointments in May, I specifically selected at the time (for what I understood) as my last appointment, post-surgery to be after the Art on the Lawn Festival. Summer in all fullness and yet eyes worsening, I was not only counting to the art show, but to yesterday where I had the understanding from earlier on  that I would be tested in the left eye for the new glasses lens to match my new eye lens they placed at surgery. I felt that would solve some of the bur problem when needing my glasses on…I can’t go everywhere without them; Although I do most often when at home, once even going down the stairs as it made the dizzy blur decrease.

These little but big changes–I was in anticipation! Instead, I left the clinic..with a dilated left eye and grey veil in the other…in my now confused mind, I had wasted a day just waiting (literally, almost five hours)–for nothing. I was so frustrated, angry, confused, not to mention hungry, and crying so hard, Mom pulled over on the highway to give me some clarity. I still don’t understand why my surgeon wants me to wait another 2-3 months, have another check and then get my new prescription if the eye is good even now. I don’t think I will make it that long! I am still confused.

But I am also wondering what next week will hold. And I often want to ask God for clarity in this mass of confusion I call a body. Not really a prayer, not really a demand…a simple question: What are you doing? And it’s a question that only faith can clarify.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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July 31, 2014 · 11:59 pm

Seeing Art (Outside the Box)

Tonight as I painted, I tried a new approach. It was called, “Mel takes off her glasses to see.” Sounds like an oxymoron, which I suppose it is, but that is what I did. (And just to clarify any safety concerns you may have in mind: yes, I was sitting.) 🙂 In fact, even now as I type, my gasses are beside me; same when I read or even eat, in some instances. Point is, I walk around in my glasses as if they are not my glasses–at first, it was just the left eye, after the cataract surgery, but now, it seems as if I am dealing with a cataract still in the right eye…blending with the grey haze. I can’t say this for certain, but will be discussing things with my various doctors in the next few weeks. I am ready to find out more of what is going on and what else we can do in this situation.

In the mean time, I find the best solution to avoiding headaches is taking my glasses off. My painting yesterday was the a simple prep of background for a painting I finished tonight and sorting through my button container to find the “finishing touches” of another. Add to that the fact it was mid-afternoon, so it was a more cheery work space, even with my glasses. Tonight I did paint two paintings while standing, meaning I was wearing my glasses. The first was a sunset–simple abstract, ten colors blending together; it’s style is one of my favorites to paint. The second was a redo, in different colors, of what my plans had been in the first attempt of Epic Fail. Using all shades of reds, pinks, purple and silver, I will be anxious to see how it looks in the full light of the morning. I felt as if I was playing more of a guessing game with my glasses on than an artist at work. From what I could see, I don’t think it will be another “epic fail;” but I already appropriately titled it, Love is Blind.

I am getting ready for my last Art on the Lawn Festival next week. I don’t expect my booth to be stuffed, but it is evident that I need a few new, smaller scale paintings. Yesterday morning, I sat at the kitchen table, glasses and coffee mug at the side of my notebook and I did some brainstorming, a little doodling and just staring out the window towards the beauty of Mom’s garden.

Painting is often like taking a picture–you can never fully re-capture the moment, though you can try. I wasn’t re-capturing any vivid memory photo from yesterday, but I was trying to keep in the mood, as if the brushstrokes were the quietness of the stillness I experienced when I just sat there staring out the window. I had quite the day today and found myself saying, “Good grief!”more times than a, “Thank you, Lord.” In just a little while, it will be the start of a new day…a new invitation to just sit a while and enjoy the stillness. Up until yesterday, I have not taken the time to do this–and now its all I want to do, even though I am dragging and so behind on other things. I need a better balance, but like Mom’s garden, I will not get very far in life without the proper nutrients. And so before I take to weeding and watering areas in my life, I think I might just sit. Just for a while.

If I could just sit with You a while, if You could just hold me
Nothing could touch me though I’m wounded, though I die
If I could just sit with You a while, I need You to hold me
Moment by moment, ’till forever passes by…

*words by Mercy Me.

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July 30, 2014 · 10:01 pm

At my Worst

“You know, this is blog worthy,” I say as I pause to catch my breath. Dad turns around and gives a little laugh. I had just made it down the three stairs from the top of the patio to the gravel; I just had to cross it to get to the grass and venture in darkness towards the flaming fire-pit where we were getting ready to roast marshmallows. If you have ever seen me walking grass, even in daylight, you understand how difficult this situation turns out to be–however, that night I had my Dad walking in front holding my walker to keep it steady and my Uncle was walking close behind me, for in the event I fell backwards.

I continue my mumbling, “Yep. Someone should be video-taping this and then post it on Youtube as one of those ‘inspiring’ stories that goes viral.” At this point I have to stop, because I am laughing at the thought of it and continue, “The headline would read, ‘Watch what happens when a girl, who can’t walk on grass in the dark, goes to sit with her family by the fire-pit.” It actually would be a boring video, because that’s all I did–just sit. Mom roasted three marshmallows for me and then I just enjoyed watching everyone else; can’t lip-read in the dark…and lip-reading all weekend was difficult as it was already otherwise.

Over the past two weekends, we have had two family reunions: the one in which my parents and I made the road trip to Michigan had been planned for months; the one this past weekend was a minor spontaneous overlapping of my Mom’s siblings. Lots of aunts and uncles and cousin times, too much food, games and tourist attractions, relaxation and all the different combinations of simple family pictures–both reunions have special memories–even if they were just short gatherings.

I get emotional when I know that I have to face family and friends, in which I have not seen in quite some time; pictures and blog posts are only a fragment of the physical me…real life is always the real picture. I have had a lot of these encounters this summer–before Colorado, before my friends came for the NF Walk, before the Michigan reunion, and when the other relatives came. It will probably happen before I see my doctors in a few weeks; I haven’t seen them since February…a lot has changed since then. I don’t know why this happens–it just does. The thoughts of how I used to be, and the knowledge of where my body is now…overwhelms and frustrates me at times. And I have to honestly say, right now, I am at my worst. And that didn’t faze my family at all–to them, it was just the real me. Just Mel.

Of course, I am not saying that they ignored it all–no, they were my helping hands and we even talked openly about different health issues. And like all my other encounters this summer, my family showed that where there is love…there is no fear. My thoughts of their initial reactions disappeared and were completely forgotten the moment the first “hello” and hugs were given. That’s what made the weekends so special.

Jesus sees me at my worst…even more than just the physical. He sees my thoughts and intentions, the words on my tongue before they’re spoken and my heart. He sees the real me. And He loves me despite it all. That’s not a fearful or overwhelming thought: it’s unfathamable.

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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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Filed under Adjusting to NF2, Family Times, Funny Stories, Hospital Trips, Uncategorized

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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Filed under Adjusting to NF2, Books and Movies, Uncategorized