Category Archives: Funny Stories

Road or Air?

Road trips. Yeah, I just laughed out loud at the memories. If I were an author, I could write children’s novels on the subject using my family’s experiences and adventures. As a family, we took many road trips especially in the younger years–even when Marcia was in a car seat. I don’t know how my parents survived.

My extended family circle is big. I am extremely blessed. When my Dad felt led by the Lord to move West (Colorado) for work, my parents made every effort to make certain that we kept in touch with all three sides of the family. Because of this, road trips took different directions: one year, we would go northeast states in a loop, squeezing in as many family/friends as we could in the short period of vacation time; the next vacation, we would go in the opposite direction doing the same pattern. Road trips also gave an opportunity to visit historical places and other tourism specialties in different cities.

In our suburban, there was this unwritten form of conduct for the seating. Because Melissa and I didn’t get carsick, we were always smashed in the backseat. Melissa’s long legs could only handle so much of the no leg room and for myself, my pet-peeve was not being able to hear the music. Literally the example: No one is talking, so I ask, “Can we turn up the music, please?” Mom turns up the volume. As I have now broke the silence, now everyone is talking or bickering between the middle/backseat–Mom turns down the music. Unfortunately, the only music we never wanted to ask to be turned up was Dad’s oldies. I finally learned to appreciate them (before I went deaf.)

Now, the backseat was responsible for getting the snacks, packed lunch or Dad’s Diet Pepsi from the cooler. Being efficient packers, the cooler always landed in the farthest back of the trunk, in which one had to unbuckle their seat belt to practically climb over the pillows and duffle bags to get in the box. Somehow, someone upfront was always hungry when the backseat persons were sleeping. The middle seat was responsible for the trash bag. I am not sure why this was a big deal, but most of the seat bickering was based on the trash bag, or the fact that they had controls for the air vents, their windows rolled down and they had the best seats when we played the Alphabet game (of course, Dad driving had the best seat of us all!)

When we started traveling by plane, I liked the convenience of getting to our destination quicker and always tried to act more mature when we sisters got to sit by ourselves apart from Mom and Dad. The only real code of conduct our family has for air travel is that we get to the airport a prompt two hours early to check in our luggage and get through security. Traveling the air was a breeze, until this time my ticket officially labeled me as a disabled passenger.

The disabled label does not have any real grasp on my mentality…it used to irritate me significantly, but now it is something that I have come to acknowledge. My disabilities are not always visible, which is why no one fully understands the amount of physical pains, pressures and problems that my body endures. I don’t blog about this subject–even though it is one of the biggest physical challenges I daily encounter–but to understand the significance of my fear for this flight, you must understand that like any other area in my body in which the tumors destroy the nerves–there is disaster in waiting. In this instance, it is my bowels. I have little to no control of them or their patterns. I often feel controlled in fear of having accidents; no 26-year-old should be having accidents, but it has happened. It’s humiliating.

So as I started preparing for the flight to Colorado, I felt fear take a strong grip over me and I asked a few close friends to join 1me in prayer about this–I needed peace. Our flight out left at 7am, so in code, we arrived to the airport around 5:15am for check-in and security. We checked in our two suitcases, as well as my walker. I was then pushed through security and only stood (Mom holding one of my arms to keep me balanced) when they performed the security pat-down. Passing the requirements, we headed to our gate.

You can tell that it was our first time traveling in this manner, because when we arrived at our gate, we said our thank you to the girl who pushed my chair and then she left to go help another wheeled chair passenger. When they joined us, Mom and I saw the lady tip the employee. As she left, I looked at Mom and she asked exactly what I was thinking: “Were we supposed to tip her?” We looked in our wallets and resolved to use what few dollars we had to tip any others that help in such a manner. 🙂

Being a disabled passenger flying Southwest airlines is sort of like having First-class seating. I was wheeled to the plane door, then helped to the seats…Mom and I decided just to sit the first row. There is a first time for everything. Still nervous for the flight, Mom gives me reassurance prep-talk and soon the plane is running down the airstrip. I remember take-off. Then sleep found me. We landed in Denver and I was one of the first few of the plane, once again pushed in a wheel chair to baggage claim, although this time they buckled me in…which I found quite hilarious! It made sense, however, once we rode on the concourse terminal train. I have never felt so much freedom at the sight of my walker waiting for me at baggage claim!

In both my flights, I had to completely surrender myself and trust in God’s protection. It was NOT easy! But I saw answered prayer; I lived answered prayer. On the last day of meeting friends, I had the chance to see my interpreter from CCU. We were discussing this flight story and I told her that I had been challenged by the experience. How often it is that I say the simple phrase, “I’m praying for you.” Then I forget or say it once quickly, then get busy and move on with life.

It humbles me to know that I have prayer warriors who daily lift up my name to God; they present my personal, detailed requests…as well as the need for comfort and strength. Prayer in my life, as of late, has seemed to be an unwritten code of conduct–very formal, lacking zeal. Like the Disciples (Luke 11:1-4), I often in question say, “Teach me to pray.” And I know He will answer.

The function of prayer is not to influence God, but rather to change the nature of the one who prays.

Soren Kierkegaard

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To Feel Numbness

This past Mother’s Day, we decided to treat Mom with a picnic at the state park just down the road. It was such a lovely day! After the Frito taco style lunch, everyone played some outdoor games…I focused on Frisbee and amazed myself how good I could catch while sitting on my walker. Throwing it back to another person was a different a story. The day had me thinking of years past where we would take family picnics in the mountains. But instead of picnic birds and cute chipmunks joining the feast, we just had bugs. While Melissa’s pup, Basho, tried to eat a caterpillar, I was distracted with a few baby spiders crawling around at the end zone of our picnic table cover.

“They’re in nature and they’re so tiny,” I kept telling myself. Mom and Dad have done a pretty good job of keeping spiders out of view in the house–it has been a while since I have even seen one so close. I think the time helped calm my previous state of hyperventilating in arachnophobia; even watching The Hobbit: The Desolation of Smaug. was more tolerable (of course, Marcia and I were a little distracted too at that part, as we were attempting to get my caption specs to work properly!)

Anyway. back to Mother’s Day, the sun was shining and not yet having my sunglasses on, I was in squint mode trying to keep up with all the lip-reading conversations. Up until this point, lunch had peacefully survived without epidemics of girlish squeals of bugs–but I broke that trend when all of a sudden, I realize that this is no cataract fuzz in my right eye view. It was a spider! And it was no tiny baby one at that either! My first reaction–the glasses got thrust off with my left hand and shoved into Dad’s face (well, more like over his plate that was still full of Frito taco lunch.)

“There’s a spider on my glasses!!” Dad takes my glasses and flings the spider off into the grass. I continue, “Gross! I am infested with spiders!” Still disgusted, it occurs to me, “That could have been crawling on my face!” And Marcia confirms, “Well it was on your arm.” Yeah, thanks for the warning.

I am not certain as to why numbness is a side effect of the tumors. I understand muscle atrophy and weakness, but not the numbness or why/how it also affects the muscle weakness too. I can’t even tell you when the numbness first began…I don’t remember. All I remember is that it started in my left ring finger at the tip. Slowly over time, it progressed to other fingers in the left hand and my toes. A definite turn took place the summer of 2010 when the tumor on the 5th Nerve doubled in size, suddenly leaving me with intense jaw pain. I first thought it was TMJ, as others in my family have the condition, but as soon as I felt the first tingles of numbness I knew it was tumor related and it was confirmed by the MRI results.

Numbness in the face was strange at first–now, it covers everything: forehead, gums, cheeks and neck. As of this past week, I have confirmed numbness in  the upper left lip. Mom says it is not noticeable, but if you studied my face closely, you can see the lip is a bit poofed and that makes the lip slide to the right (just a tad, but still, I see it.) It’snot just my face…my feet (can’t really wiggle my toes anymore), whole left leg and right arm and hands…areas on my shoulders and back too…numb.

It is hard to describe “numb.” One would assume when you’re numb that you don’t feel anything. Almost but not quite. I feel things, depending on what it is. Just examples: I feel the ground when I walk and I feel what I touch with my fingers (minus the right pinky and my grasps are very weak); I can’t feel temperatures in the hands or feet, so it is hard for me to tell if my feet are really cold or if the plate coming out of the microwave is hot. Numbness tingles like when you come indoors after being outside on an extremely cold day–the thawing effect. Numbness is heavy. Numbness is a pain (although too figurative, I am implying the literal definition.)

As I was thinking of numbness this week after confirming it in my upper lip, different situations came to mind. I found myself, in numbness, with a burden for those who hurt deeply (physically, mentally, emotionally, spiritually.) Whatever state, I realized that people in immense pain use “numbness” (or the forms of action in a way to numb the pain), to escape pain (or the hopes of escaping their current suffering.) But you never escape through numbness–because you feel numbness…it is heavy, it is a pain. Numbness (or the denial of the situations/conditions one is living) is not the answer.

“Held” by Natalie Grant

(*Second verse)–This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

 

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Everything I Am Not

In season three of The Andy Griffith Show, there is an episode titled, “The Great Filling Station Robbery.” In the beginning of the show, we find Deputy Fife (as usual) trying to bring the Mayberry jail to more modern terms with technology, though it is not needed. As the episode progresses, the Filling Station has a theft problem. A troubled teen named Jimmy had just been given a job there to assist Gomer in the pile-up of cars needing to be fixed while the owner, Wally, is away. Because of his troubled past record, Jimmy is blamed for the robbery. Andy takes the calm road and waits for the next evening to see what happens; Barney, of course, sets a flawed attempt of greatness to catch the crime in action and jumps to conclusions. At the end, it is Jimmy’s knowledge in modern technology that catches the true criminal in action, proving that he was not what everyone thought he was to be.

Although Deputy Barney Fife didn’t do anything to solve the robbery, the ending minutes can make you giggle when Barney calls his gal, Juanita, at the diner. In typical Barney-ego seriousness, he recites a poem:

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Juanita, Juanita…lovely, dear Juanit

From your head down to your feet,

There’s nothing half so sweet–

As Juanita, Juanita…lovely, dear Juanit.

Oh, there are things of wonder of which men like to sing.

There are pretty sunsets and birds upon the wing.

But of all the joys of nature, none truly can compare

with Juanita, Juanita…she of beauty beyond compare.

Although I don’t recite poems comparing a sweetheart to the joys in nature, I have found myself lately in a state of comparison, usually in physical terms only. I can compare myself to others placing myself above them (judgmental) or placing myself below them (insecurity). Yesterday, I did both.

Being disabled, it is easy to find yourself in this position. I wonder if any other disabled individuals can also agree to this, but personally, I find myself comparing my physical and mental state towards other disabled individuals. There is always the persons that are far worse off than yourself; sympathetic thoughts towards that individual mingle with your own thoughts of gratitude…”I’m glad that’s not me.” And it is wrong.

On the other spectrum, there are those who you may consider not as bad as what you endure, so you place yourself above them in judgement. This is my downfall. In comparing myself to others in this way, it makes my own pains seem not as heavy. And it is not so much a condemning judgement, as it is maybe more self-pity; a “I can no longer do these things, but you can…” But even this thinking is wrong.

Comparing myself to anything other than what God holds true in my life can only be “half so sweet…” and I miss the purest blessings of reaching out to those around me.

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Strengthening exercises

Yesterday, I had a short appointment to meet my new primary family doctor. It is necessary for me to have a local physician to cover the basic grounds of needs that I may have, like getting my ears cleaned or lab work done. Most importantly, I needed a local doctor to regulate my blood thinner levels when I take an INR test at home. Because I am now at a certain age and new health care policies, some of the doctors from my team of specialists at Children’s can no longer see me as a patient. Not that they don’t want to see me (as I was told last Fall when I had my long day of seeing the team in rotation,) but I would soon be out of their age of expertise. My birthday early Spring marked that I am now too old. 😉

The local family physician will now be, in terminology, my hematologist (regulate INR levels) and my Genetics doctor (regulate my thyroid level and others like Vitamin D, etc.) I am very thankful that Children’s has an adult program for patients with extreme rare diseases like myself and that I am still under their quality care; but for the basicness, I must admit…having care so close to home is a nice aspect.

Going to the doctor’s office usually means paperwork. Even though I have been a patient before at this facility in town, due to new regulations (no doubt) and the fact that it was a new doctor/first time visit for me, we had a questionnaire to fill out before we got into a room and then had lots of conversation questions between the nurse and the doctor. I have been to my fair share of appointments, so I knew the typical routine: height, weight, vitals. Then medicines. Not to say that I am a genius, but somewhere along the way, I finally typed out all of my medicines with their full prescription names and doses. I even alphabetized them. (Genius!) haha. 🙂

Next you cover the basic family tree: paternal and maternal–parents and grandparents. Because my disease is genetic, my two older sisters also get looped in the information. Then it’s me. Where do you begin? We already covered the one sentence definition: I have NF2. I tend to talk too much and too detailed, so usually Mom or Dad give the basic rundown of history, starting freshman year of high school–the basics of treatments and how they affected my body and what doesn’t work in my body anymore. i give my two cents when needed, make corrections or answer questions.

I usually get asked three main questions: Do you smoke? Drink alcohol? Any chance you are pregnant? No, to all the above. So yesterday when the nurse started asking me questions, I was startled by the first, due to–what I considered–the randomness of the inquiry: “Do you drink caffeine?” Now understand, the past week there had been extreme late nights, awakening with early mornings and a bustle of family activity. Even yesterday, after an early morning farewell to Marcia as she heads West for the summer, Mom and I decided to do all our errands in Xenia before the doctor appointment. I like checking off my errands lists, but it leaves me exhausted..especially when in a hurry (my body doesn’t hurry.) “Do you drink caffeine?” Even after my two morning cups of Tim Horton’s coffee, obviously, my mind was not functioning.

I look at Mom with the, “I am quite confused!!” facial expression. “Caffeine,” Mom says. Reading Mom’s lips, the brain solves the equation: Caffeine was your morning cups of coffee. My eyes widen with energy, “Oh yes! I drink caffeine!” I get the reassuring nod and as the nurse continues to look at the computer screen, she asks the next question: “Do you exercise?” Fully awake and comprehending the question, I chose my reply wisely–“Define ‘exercise.'” 🙂 After a pause, I add,”because if you’re looking for running or crunches, then my answer is no. I do neck stretches, but things like walking up the stairs is an exercise for me…everyday living is an exercise.”

It’s true. Trying to stand with good posture or keeping my head upright is an exercise. Bending down to pick up something off the floor is an exercise. Folding my laundry, helping with the dishes or pouring milk from a new container is an exercise. Today, it was walking on the grass with my walker from the parking lot to the circus tent. These daily exercises may not be adequate enough to re-strengthen what the tumors have destroyed–in fact they’re not. But there is still a hope beyond the dwindling physical strength and it is more than adequate.

This is a sacred day before our Lord. Don’t be dejected and sad, for the joy of the Lord is your strength!

Nehemiah 8:10b, NLT

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I was Needed

This probably will sound absurd. It probably is. However, this morning I was needed. It wasn’t anything urgent and could have waited (I suppose), but at the moment, I decided to take action myself. I wanted to be depended upon. I needed, for myself, the reverse psychology thinking–being the giver..instead of the dependent. One small gesture gratified this. This is Muffy. He’s my cat. He’ll be ten (in human years) this Fall and has used four of his “nine lives.” He’s pretty special. When we lived in Colorado, all our cats were outside cats, making their home in the back of the barn. I never saw any mice! When we moved, Muff and his brother cat, Tux, had to do major adjusting as we had no barn. We tried purchasing a small dog house and placed it on the patio. It wasn’t appreciated at first (although Muff finally started using it, but prefers the cushioned lawn chairs.) As for Tux, he discovered the shed across the street. I always thought it funny as I referenced them in parallel to the personalities of Jacob and Esau (Genesis 25), because they certainly acted like it.

Now that it is just Muffy in our family, he has had to make more adjustments. He still loves the outdoors and when the grass grew so tall at the unoccupied neighbor’s house–Muffy was living in a jungle dream. I now have seen many, many mice (more left-over version, sad to say.) The Winter months were harsh, so he spent a lot of time indoors; in the summer, sometimes he comes in on extremely warm/humid days. Outside, he claims one specific patio chair that we placed a green blanket on like a basket-shape. Inside, he now claims my bed; or his newest fancy–the “underworld” between my mattress and the floor.

Taking care of Muff used to be a cinch. Now, I not only depend on my family to help with my own needs, but also taking care of Muffy…even something as simple as placing his food dish out on the patio. And that is where my morning story takes place:

Muffy has now, too, discovered the coolness (in literal terms) of the shed across the street, so it was no surprise to me that he didn’t come when I called his name out the screen door with a short, “Here kitty, kitty.” I ate my own breakfast and when I decided upon a piece of toast, my eye caught a whiff of black on my turn to the pantry. “Hi, Muffy!” The main door being closed, he somehow sensed my talking to him, because he started the “cat dance”: tail swishing, head twisting, rubbing his nose against the screen door. “Are you hungry?” My obvious inquiry is answered with another cat dance.

I push my walker to the laundry room and get a dish of food. I had noticed Marcia’s hallway light to her upstairs bedroom was on, as well as the basement. Figuring that she was awake and in either one of those two places (she was gone–unknown to me), I text her and ask if she can help get Muffy’s food to the patio. As I wait for a reply, Muffy’s cat dances are getting pathetically cuter and I just decide–“I’m going to do this! (somehow)” Even though it is only two steps down, there is only a side handle, so logically, it is not safe for me to try to hold the food dish and screen door open with one hand and try to backhand grab the handle–it is complicated and doesn’t work…I already tried it numerous ways.

To avoid a Lifeline escapade, I open the door and stick my right foot out to avoid Muffy running inside. He just rubs his head against your foot regardless. I quickly set the dish on the first step just out of reach for the closing door line. Muffy is thrilled and starts munching away on his bland, dry breakfast food. I close the door and smiled. I just fed my cat his breakfast. 🙂

I often forget that God desires to be the Giver. He gives, even when I don’t ask, and I take the blessings for granted. He gives because He Loves. When I receive that blessing and share it with others, God too receives the glory.

Therefore the LORD waits to be gracious to you, and therefore he exalts himself to show mercy to you. For the LORD is a God of justice; blessed are all those who wait for him.

Isaiah 30:18, ESV

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Filed under Adjusting to NF2, Family Times, Funny Stories, Muffy

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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Selfies

I’ll be the first to admit that I am not tech-savvy. I still use a flip phone, none-Mac laptop and a digital camera. My social media world consists of this blog (I know the basics), a Facebook account and a Twitter (I had to ask my cousin why people wrote with #hashtags as I was clueless.) It was only two weeks ago that I joined, what I consider, the elite ranks of e-readers, as my parents helped me pick a Nook that met my needs now that my hands are starting to change and holding books is not always an easy task. Considering all this, it should not surprise you then if I told you that it was only at the beginning of this year I learned a very important word in the world we know today. The word: Selfie.

By now you have probably regained your composure from having fallen off your chair in laughter, but think me not of being a complete hillbilly, because in my defense, I was taking “Selfies” longer than the word has even been around. And I did it with film camera and it’s timer. It was only this past weekend that I placed the two key facts together (my own pictures and term definition) to realize this discovery:

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This is me–fresh high school graduate about ready to leave for my first year of college. It was a Sunday and when we got home, I decided to try taking a few “artistic” photos before lunch. I grabbed my golden 35mm Kodak camera and went to the barn where my eye had distinguished a few candid areas. I placed my camera on the third and final step that led to the upstairs recreation room, set the camera to timer mode, and quickly sat in the weeds smiling in the direction of the parked Honda. I didn’t move until I thought there had been plenty of time for the camera to “click.”

When I developed my film, I had no idea if my “Selfie” had even turned out with me actually in the picture; other past pictures had been out of focus, too far away or too close, cheesy, or vain attempts to remember my long locks of curled hair. And so as I sat this past weekend sorting my pictures, I thought of how we see pictures today: Instant. There is no waiting for the film to develop or anticipation of seeing the pictures while waiting in line to pay for them. No strenuous task of ordering reprints by holding the negatives to the light or frustration of even having bad pictures as we simply delete what we do not want before ever ordering prints online anyway. We share our pictures on social media then comment, like (or dislike), and tag each other. Everything in an instant.

I am not condemning “Selfies,” social media or even modern technology, because even I enjoy these and take part in them. It’s more the combination of having found my old pictures and then having to face my life in a new aspect of the “Selfie” living with NF2 that this past weekend caused me to slow down. Even just for an instant and face reality, choices. Life is about choices, change. And one day, it will be set for eternity.

It will all happen so fast, in a blink, a mere flutter of the eye. The last trumpet will call, and the dead will be raised from their graves with a body that does not, cannot decay. All of us will be changed! We’ll step out of our mortal clothes and slide into immortal bodies,replacing everything that is subject to death with eternal life.

I Corinthians 15:52-53

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