Category Archives: Adjusting to NF2

May 3, 2014 · 7:33 pm

Under the Heavens

Yesterday at breakfast, Megan and I started discussing some of the different college courses we had taken during our years of studies. Old college days have been in thought since this weekend marked Marcia’s college graduation. Our “baby sister” now a college graduate! 🙂

In the course of our breakfast chat, Megan and I discussed our science classes. I had taken Environmental Science (being a Business major, this was the easiest to comprehend–bonus, the shortest labs!) and Megan had taken a course from her college that was equivalent in study to my Environmental class. We both concluded that the study of rocks was not our keen interest. We ventured to other areas of nature…the oceans and heavens, and it made me think back to the last summer I lived at home (San Luis Valley), before permanently moving to Denver that Fall to finish school and work.

IMG_4951 Cosmos.

To cap off my Gen-Eds, I took several online courses from Red Rocks Community College. Besides my Humanities curriculum and online discussions, my next favorite that summer was Astronomy. Being in the science department, this also meant labs. But I didn’t mind the labs. From my parents backyard, on clear evenings with little or no moon, the heavens sparkled!! I could spend hours gazing at the stars, trying to find constellations in my Dad’s telescope or drawing the phases of the moon. One couldn’t do that living in Denver.

Growing up, we sisters would take blankets out on clear summer evenings and lay out on the grass. We would talk about life–funny stories, the little insignificantly seeming things that back then got on our nerves, fears or dreams–and stare up at the sky. I remember feeling so small…one can’t even see the whole expanse of the sky without turning your head. I know the ocean is deep, unmeasurable, but the heavens are unfathomable.

il_570xN.592181820_c2f2 Northern Lights Show.

Once in junior high, I was getting ready for bed. On summer evenings, it was typical of us to leave our windows open as to get a cool breeze and hear the outside voices of nature (my poeticness version of saying, “Hear the cows chewing the grassy fields and mooing distress-fully.”) I was closing the curtains half-way when I noticed the sky was glowing red. My first thought, “Jesus is returning!” and went into an excited panic moment. Then realized it was not, but couldn’t put my finger on what I was seeing. Still in an excited panic state, I ran downstairs (yes, I literally used to run down the stairs), and yelled, “The sky is red!!” My Chicken Little moment. Dad looked out the study-room window, but the corner of the roof blocked his view of the red, making my Chicken Little situation all the more realistic. But I persisted that he go outside. When we did, the sky was aglow! Northern Lights…right out my bedroom window. Unfathomable.

He who made the Pleiades and Orion,
    and turns deep darkness into the morning
    and darkens the day into night,
who calls for the waters of the sea
    and pours them out on the surface of the earth,
the Lord is his name.

Amos 5:8, ESV

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April 29, 2014 · 11:44 pm

Dial tones

Talking on the telephone is not my forte. Let me clarify this: talking to anyone that is not a family or friend is not my forte. It is not social ungraceness on my part (my pride rings in there), but rather, it is lack of understanding. On the receiver end, they lack patience or clarity of how my Captel phone works (though it is the first thing I explain); on my end, it is the words…I sit in delay. And today’s phone call to my pharmacy definitely proved this to be true.

Timely communication. In our fast-paced world, we expect it. And when you face the untimely pair–Deaf person and the automatic voice communicator spouting number options in order to connect the call to a different line, when I just want to talk to a human being), it confuses the system. And when you’re the one on the slower end, it can get to you…very much like the feeling when your “taking too much time paying as fast as you can in the grocery store line.” We can’t handle untimeliness.

9byN5Db9EK-8 (drawception.com)

Over the years, I have had many interesting phone conversations while using Sprint Captel online: some calls I literally yelled at the receiver end as their lack of patience exposed my own lack of patience and anger; others I cried, still others I had a pleasant chat. Then I just stopped all phone communication. When I finally restarted, using the Captel land-line phone, it felt like re-learning communication. Dad and I made some test calls; I was so nervous. But the feeling didn’t last long. How could it?, when I finally was able to call my grandparents. 😀

Being Deaf, I could choose to use untimely communication in life as crutch. I would rather use it as a staff, moving forward and learning lessons.

I must speak simply and clearly. Find me alone, and I tend to over talk. It even shows in my writing. Everything must have an explanation. I must define, describe and be known. I want to be heard,  but sometimes being heard means meekness.

Slow conversation doesn’t have to be a hindrance. In fact, it can be enjoyable. Here’s why: when I am waiting for my words to be encrypted, I have to “listen” and even though I can’t hear the voice over the line or timely lip-read, I am processing what the person is saying without thinking of my next “sudden response.” When I sit in a person-to-person chat or talk on Skype, the timely communication effects this “think-while-silent process.” It goes in full reverse, focusing back on myself. When I focus on others, I receive more joy.

Untimely calls can make a difference in someone’s day. And in return, it blesses mine.

 

 

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April 28, 2014 · 11:14 pm

Cute Shoes

If you recall, I have this knack for cute shoes. I think it could be partially genetic–a family trait that naturally flows throughout my genes, much like my love of coffee and good reads. The artistic eye for cute shoes is also a key conversation starter with strangers. “Cute shoes!” I say honestly and enthusiastically while waiting in long, slow lines at the store. Time suddenly seems to quicken its pace and before you know it, your engaged conversation is ending.

Even though this intrigue of fashion is still very much part of how I complete my wardrobe for the day, it is not as much of an importance of appearance anymore as it is sturdy convenience–although at this point in time, I can argue the fact that it doesn’t matter what is on my feet…I am still prone to ankle twists, bad balance and falling: thus, I still own a pair of cute slip-on shoes that I save for special occasions, just like my bag of make-up. (Secret! 😉 )

Because I realize that my walking is declining and my bones are fragile (it is a miracle that I am even walking, let alone have not broken any bones during my falling episodes), I am trying to take the appropriate steps in safety by wearing regular shoes–except that I can’t physically tie shoes due to my hand conditions. My physical therapist had mentioned last Fall during one of my PT sessions that there was a shoe and leather repair store, in which she recommended to her patients. This store specializes in shoe adjustments as well as repairs. My adjustments would be removing the shoe laces and getting Velcro straps.

“Sounds old-timer fashion,” my first thoughts concluded. (No offense meant to my elderly readers.) But when I received my pair of tennis shoes back, I actually think that they are kind of cute. 🙂

DSCN3430

 

Remember how exciting it was as a kid when you first learned how to tie your own shoes? My Velcro straps enabled me to re-experience that simple childhood joy.

The Sovereign LORD is my strength! He makes me as surefooted as a deer, able to tread upon the heights. Habakkuk 3:19, NLT

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April 23, 2014 · 11:05 pm

Eye Appointment Findings

Today, Mom and I went to Cincinnati for my ophthalmologist appointment. I was super excited this past November at my last check up that I could extend my next appointment from 4 months to 6 months, as my optic nerves had been very stable and doing well. Three months later, the end of February, I started noticing blurred vision in the farthest corner of my left peripheral vision; random days of blurriness in my vision began in both eyes by mid-March; by the first of April it was consistent.

Considering the extent of my disease, this probably is not the best way to go about living everyday, if and when, I am feeling or “seeing” new changes. But oftentimes, I give the changes a fair chance to prove they are significant changes before I mention anything, because some changes are not worth a huge fuss over. However, if I feel the changes are a major issue or I am concerned right at the start, I will talk to my parents and make them aware. Just depends.

In this case, I only mentioned something about my left peripheral vision when I announced my driving decision. At that point in time, I did not think the hazy blur would change and would just show, at most, as more blind spot on my visual field test in May. But when the blurred haze started becoming more frequent, I also noticed it was affecting the ways my eyes react to light and focusing–ultimately, balance and lip-reading as well.

By now, I am not sure if I had so much mentioned the problem to my parents, but I know I did a bit of gripping about my vision frustrations–and besides that, I would take off my glasses to read, as I can’t focus fully without major squinting when wearing them. First time Dad saw me in this manner, he sort of gave me that shock look (“What are you doing?”)…”I read better without my glasses on,” I tell him. Reading without my glasses or else squinting profusely are now a pretty normal sight to see.

My parents are notorious at knowing my disease (a whole lot better than myself, how ironic) and when I finally explained my eye problems in full-length, analogical descriptions, several possibilities were discussed: maybe I just needed new glasses or bifocals; it could be my optic nerves, but it didn’t seem to quite fit as I have had that experience previously; or it could be cataracts, as long-term use of the steroids can cause an increase in this area. Keeping all these in mind, I wrote my blog update very vague, because even details to me were not worth trying to figure out on my own–leads to worry anyway.

And so today, we learned a few things: 1) By the way I was holding my punch button while taking the visual field tests, it was proof that I did not grow up playing Mario Brothers. And I mentioned this to the lab technician as we started the right eye test for a second time, (haha).  2) My visual field tests and optic nerves are actually around the same results as they were in November. Stable results are joyous thoughts of thankfulness! I am so glad it is not my optic nerves! 3) Thus, the cause and problem is cataracts. I see a surgeon specialist, highly recommended by my ophthalmologist, on May 14th where we will discuss what comes next. For now, it is back to waiting in the blur, without worry.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:18, NIV

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April 21, 2014 · 10:36 pm

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.” 😉

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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April 18, 2014 · 12:52 am

A “Pick-Me-Uppy”

During my parents ten-day absence, my Lifeline was set so in the case I fell, triggering the sensor or needed help, thus personally pressing the button–if no one answered with the communicator over the intercom, the Lifeline representative would automatically dispatch emergency personnel instead of calling my parents cell phones, which is usually the prior action in normal circumstances when they are home.

Knowing this, I took extreme extra caution as to my watching my balance (although I could not fully control that aspect) when standing up from sitting at the table or the times of bending over to retrieve something off the floor. I also made certain that I tried my best not to accidentally bump my necklace and set off the sensor without my knowledge. Last thing I wanted was for an emergency squad to come barging in finding me perfectly normal or otherwise startled by their presence. I only had to concern myself with this thinking when I was home alone.

I had an immense!! coverage of helping, encouraging, loving, giving hands during this time. Actually, it is not something new; I just felt the impact of everyone’s generosity and concern more being here alone. And I am grateful…so blessed. There were hot evening meals, invites to get coffee or help me with errands, if needed; there were those who offered to be “backup” plans just in case and one to be available to help with outdoor needs, such as in the event we got snow. I got texts and emails from friends out-of-state making sure I was doing well and had the chance to make a few Skype video chats and call my grandpa as well. The week was anything but the dull-drums! 🙂

Because I do need more help these days–and just for a safety factor–we did ask two girls my age to help me on a regular basis. One came for a few hours in the afternoon and the other stayed with me late evening until mid-morning. They helped me get to the basement so I could paint, walk to get the mail or take me for errands/church; dishes, folding laundry, cleaning Muffy’s kitty litter and taking out the trash; even getting my compression stocking on in the morning! Things I can no longer do well or if at all on my own. Marcia was around often too, but it was nice not to lay all responsibility on her shoulders; my family does so much already.

However, it was Marcia who saved me from a Lifeline emergency squad experience. The day after my parents left, my friend had invited me over to her house to be with her family and stay for dinner. I had roughly about an hour between my evening helper leaving for the day and my friend coming. I finished getting ready and then decided that I had enough time to quickly check my email. I pushed my walker into the study room to use my parent’s computer as it was more convenient (or so I thought.) I parked my walker to the right of the office chair and was in the process of swiveling the chair around so I could sit when my shoe hit the floor mat and sent me off-balance.

I blurt out, “AH!” and since the chair is also moving, I have no composure–only the downward decent to the floor. Now keep in mind this all happens so quickly, as like my thoughts–and as my head is swarming with perceivable outcomes (emergency personnel, being stuck on the floor, my friend coming), I suddenly feel a pair of strong arms trying to ease or prevent the rest of my fall to the floor. I am Deaf and my position to the computer left me with my back facing the study room door; plus I was home alone two minutes prior.

One would think that this would have at least startled me or caused another blurtation, “AH!”–but instead I am thinking thoughts of an angel. I finally land on the floor sort of siting awkwardly cross-legged and see a whiff of hair out of my right peripheral vision. I tilt my head up and see Marcia’s smiling yet concerned face peering down at me. “Oh! Hello!”…the first words out of my mouth. The Lifeline sensor finally sets off the intercom; Marcia goes to correspond with the representative and then returns to help me off the floor. I would say “impeccable timing,” but my friend that evening declared, “Hand of Providence!” Indeed, it was.

“Thank you.” The two-worded phrase doesn’t seem to circumference the gratitude I have for all that is bestowed…whether in meeting my physical needs or upholding my name in daily prayers. To each of you–may you be richly blessed. ❤

—

You Tube video: (you can click on the song title to be directed o the page)

“More Than You’ll Ever Know.” Watermark. All Things New. Rocketown Records, 2000.

 

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April 16, 2014 · 11:40 am

Pride and Humility

“Oh, the things you used to complain about,” I tell myself as I rummage through a stack of folded clothes on my closet shelf trying to find a pair of cozy sweatpants. It was getting later in the evening and if I hadn’t already thought the rest of my day had been a frustrating one, I did even more so at that moment. The unexpected sick intestines always forces one to extreme humility. Learning humility is not a glorious experience. Yesterday was just one of those days.

My parents just returned Monday evening from their special anniversary trip. During their absence, I had an abundance of help, but also had times when I was alone. I thought I did pretty good for myself, considering everything. I even boasted, “I’m so proud of myself,” and would continue to tell why this was so.

Growing up, we sisters liked to watch the Kevin Sullivan televised movies, Anne of Green Gables and Anne of Avonlea. I am surprised those VHS tapes lasted (better still that my parents still have them!) One of my favorite characters is Mrs. Rachel Lynde–always in the gossips and people’s business, or as Marilla Cuthbert would say, “meddling in other’s affairs.” This would draw a sharp gasp from Mrs. Lynde as if she were offended by such an accusation, though it never took her long to get right back to her normal self– “You know I pride myself in speaking my mind.” In her eyes she was never at total fault for her disputes with Anne and offered sound guidance to any ear listening, which usually was Marilla. “You know what they say Marilla: ‘Pride goes before the fall;'” Anne had just left for Diana’s pre-wedding b0nfire party, thus leaving the two old friends in the kitchen. Marilla is at the stove retrieving the water kettle, back turned to Mrs. Lynde, she semi-rolls her eyes before turning around and patiently replies to her friend. An act of humbleness.

I don’t think yesterday was an example of a “Pride goes before the fall” moment, rather, I believe God used it to show me Jesus. You see, as I was fumbling around trying to change clothes and make myself cozy, Mom was on her hands and knees cleaning up in my bathroom, because I physically can’t myself; even my “help” at the end didn’t account too much. When crisis happens, I am not abandoned, but surrounded with helping hands. Yesterday, though not a glorious day, was my humble reminder.

But Jesus, even after showing His Love to His disciple’s by getting down on His hands and knees to wash their feet, was abandoned by all in His greatest time of need. Mocked, beaten, betrayed and death–it was then that his disciples, in confusion, thought they had been abandoned. Shocked and morning His death, they didn’t understand..not until later when the Truth appeared to them–Jesus was alive! The Easter story is not about abandonment but salvation–surrounded by Christ’s Love and held in the nail-scarred hands.

But may it never be that I would boast, except in the cross of our Lord Jesus Christ, through which the world has been crucified to me, and I to the world. 

Galatians 6:14, NASB

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April 13, 2014 · 8:21 pm

Just Thinking

I’ve slacked on my physical therapy exercises for my neck and upper arms. I used to spend the first half hour of my morning sitting on the edge of my bed performing the simple repetitions. I am not really sure if it necessarily “strengthened” my muscles, but it kept them active. I want to move for as long as I am enabled.

The brain is as much fascinating as mind-boggling. The communication between my brain and muscles is simply cut off by the tumors on the nerves. Numbness, weakness, atrophy, fatigue. It is days like today–major fatigue–where I feel the side-effects most. I can’t deny it, numbness and weakness is increasing in my hands and feet; Sometimes it is a workout just to keep my head in a proper upright position. It feels relieving just to let my bend down–if I am at a table, you will most likely find me holding my head up with my hands under my chin. So mush for proper manners. 🙂

This afternoon I was writing a few letters. For one, I sat thinking of an encouraging verse to share. Psalm 3:3 came to mind. “But you, O LORD, are a shield about me, my glory, and the lifter of my head.” In turn, God encouraged me: It was what I needed to hear, remember, and build strength upon. 

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April 10, 2014 · 10:53 am

Like a blur…

It has been progressing, slowly. At first I thought it was dry eyes–that could still be part of it even though I use eye drops multiple times a day. There are a few other thoughts we have discussed about this–my vision. I am not so much in panic or alarm as I am pure annoyance.

My vision just gets blurred. I can’t focus, I am starting to squint more. It is like getting teary eyed..when the water is in your eye and it makes your vision a blur. You blink and the blur subsides as the tears flow. I blink and the blur is still often there. It is also like getting dizzy–where you close your eyes to refocus. This is the best I can explain.

The annoyance comes as it affects my reading, especially lip-reading. and my balance is thrown off as well. Different light settings can also determine how bad the blurred vision is–my laptop and cell phone screens especially. I have days that are better than others, but I have seen (haha, sorry I couldn’t resist the pun!) a steady increase of this problem over the past month. My checkup appointment with my ophthalmologist had already been set months ago for May 7th; we called in and it is now April 23rd.

This is all I have for you. I do not wish to outline my further medical “could possibly be this assumptions. I just write for a prayer request: that the vision problem can be recognized at my appointment, and if so, properly treated in a timely manner. I depend on my vision, because I don’t have hearing. It has become a test of faith.

Be Thou My Vision

Irish hymn, translated by Mary Elizabeth Byrne

Be Thou my Vision, O Lord of my heart;
Naught be all else to me, save that Thou art.
Thou my best Thought, by day or by night,
Waking or sleeping, Thy presence my light.

Be Thou my Wisdom, and Thou my true Word;
I ever with Thee and Thou with me, Lord;
Thou my great Father, I Thy true son;
Thou in me dwelling, and I with Thee one.

Be Thou my battle Shield, Sword for the fight;
Be Thou my Dignity, Thou my Delight;
Thou my soul’s Shelter, Thou my high Tower:
Raise Thou me heavenward, O Power of my power.

Riches I heed not, nor man’s empty praise,
Thou mine Inheritance, now and always:
Thou and Thou only, first in my heart,
High King of Heaven, my Treasure Thou art.

High King of Heaven, my victory won,
May I reach Heaven’s joys, O bright Heaven’s Sun!
Heart of my own heart, whatever befall,
Still be my Vision, O Ruler of all.

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April 2, 2014 · 9:15 am

Standing Still

Please read: this is not a post to stir controversy, point fingers in blame or have any affiliation with political parties; it is not my intention to come across in a complaining “woe to me” status or even use this post to vent personal opinions on the subject at hand.

This post is about me and my disease; how curve balls thrown at you in life don’t hit the gutter as they usually do in bowling lanes–but hit you straight on, leaving a knockout of confusion and frustration. Leaving no answers. You know my story: my body is changing, becoming more dependent on others. And as my body continues to change, so does everything else–medicines, insurances and provider policies, and the like. It affects me. It affects my family (my parents as they are my ears on the phone and the brains as we read the paperwork during these situations.) But even my parents don’t understand everything.

“Living with a handicap is not simple,” I said as Mom positioned herself in the driver’s seat after just placing my walker in the trunk for what seemed to be about the thousandth time. The reality is that anyone can say this about life: it is not simple and changes are not easy. You don’t have to face life-threatening or long-term illnesses to affirm this. Speed bumps come in everyone’s life–different time, circumstances. Some we see as we draw near, allowing us to prepare and take caution. Yet others take us by surprise, shock and confusion as they appear to come out of nowhere.

Last week, my life hit a large speed bump. Unexpected, as I am in the midst of changing health insurances due to age, I find I have been dropped from another; Frustrating, there was no warning, no official papers. Confusion at this critical time. And still, as I slowly go over this bump, what seems to be a total mess (which it is)…God is supplying the persons and resources necessary to meet my need. I could not have planned this course, nor do I understand it either. It is a God Room speed bump. His ways are best.

Stand and watch, but do not fight the battle. There, you will watch the Eternal save you, Judah and Jerusalem. Do not fear or worry. Tomorrow, face the army and trust that the Eternal is with you.

2 Chronicles 20:17 (The Voice)

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