Tag Archives: living with a disease

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. ūüôā

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

3 Comments

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

NF Awareness Month

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

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

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

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

Revelation 21:4

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

3 Comments

Filed under Adjusting to NF2, Paintings, Uncategorized

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?

 

2 Comments

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

The Open Door

“What’s the point of having a handicap sign on the door, if there is no handicap button to open the door?” My question was intended for Mom as we made our way into a store. A man nearing the entrance at the same time may have heard my blunt, yet honest, question as he held open the first of the double door entryway. I smiled and said, “Thanks!” as I passed on the way inside.

A situation such as this really is not something that is one to dwell on in frustration. I think I simply asked my question, because I am seeing this same concept more often now that I use and depend on my walker in public. But maybe that is where my frustration sometimes comes from–I think the concept of having a sign but no modem is misleading and I want to voice my opinion about it very loudly.

And this is where my thoughts collide. It is not easy for me to be disabled; sometimes my frustrations at my physical state (slowness due to hands, upset stomach, the fact that I can’t go downstairs by myself anymore or get myself outside either) causes me to want to voice my opinions strongly about the unfairness of life; (I do that anyway when it concerns health insurance woes.) This way of thinking endangers me in selfishness…that things should be as I want them to be.

And so I think of doors in an analogy of my life. Not all closed doors are meant to frustrate; not all open doors are meant for me to walk through; some doors will have misleading signs; some doors will not open on their own, but will take physical effort on my part. Discerning the right door to enter is dependent on the door to my heart–“Guard your heart above all else, for it determines the course of your life.” ~Proverbs 4:23, NLT

Doors of Greece. Pictures taken by Mel ūüôā (Greece trip, May 2010)

Myceneans Mycenaean tomb

Athens Athens

Greece0075 Phillipi

Philippi Greece0002 Ruins of the church building, Phillipi

Philippi Greece0001 Phillipi

4 Comments

Filed under Adjusting to NF2, Family Times, Uncategorized

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

7 Comments

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

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)

3 Comments

Filed under Adjusting to NF2, Family Times, Uncategorized

In the Storm

I’m just going to be honest here…this weekend has been rough. Like a sea of emotions, mixing memories of the past with the present times and having to face the reality of potential changes in the near future. Collide them together and the waves crash into the boat. And it feels as though I have been thrown overboard and I get physically sick. Weak and vulnerable, I feel my courage start to fade.

I am in the middle of the storm. A voice calls out,”Take courage! It is I. Do not be afraid.” (Matthew 14: 22-33)

He bids me come…but I am fearful of the waters, the waves–I am fearful of letting go of the sinking ship that is currently keeping me afloat. I must decide. Do I wait until the boat is no more or do I release my grip while it is still in sight? The decision is mine. How long I remain at stalemate is unknown.

Yet in the storm, I see Him waiting. He has not abandoned me. I cry out; I plead for strength, discernment, hope.

Reach down for me, True God; deliver me.
The waters have risen to my neck; I am going down!
My feet are swallowed in this murky bog;
I am sinking‚ÄĒthere is no sturdy ground.
I am in the deep;
the floods are crashing in!
I am weary of howling;
my throat is scratched dry.

But, Eternal One, I just pray the time is right
that You would hear me. And, True God,
because You are enduring love, that You would answer.
In Your faithfulness, please, save me.

Psalm 69: 1-3, 13 (The Voice)

21 Comments

Filed under Adjusting to NF2, Family Times, Uncategorized

Lifeline

Yesterday morning, I spent two hours at the hair salon getting my perm redone. For the amount of time taken, the result looks lovely (and bonus points to me as having no sense of smell fully pays off in these instances.) Nearing the end, I had twenty minutes of waiting, during which the solution needed to soak into my hair with the curlers still set in place before my stylist removed them. I asked the lady sitting next to me if she could pass me a People magazine…just something to glance at as I waited. “Pointless readings,” I tell myself, but I didn’t read much anyway as I didn’t have my glasses on at that moment.

I did happen to find one good article about a girl my age who lives with Down Syndrome. As I skimmed the blurry article, I was impressed by her courage not to let the disease define her; she had even gone to court to declare her independence rights on choosing where to live. I don’t know her name or the edition of the People Magazine for quotes, but I do remember reading a few sentences where she states that she is an independent person–she just might need a little help sometimes. I had two thoughts: First, I fully relate to what she is saying. She and I may struggle with vastly different physical limitations, but there is a common understanding both in emotional and mental thoughts of what it means for independent living. And second, whether you struggle physically or not, don’t we all have moments where we might just need a little help? It is our human nature; it keeps us humble.

When I first moved back in my parent’s house, I thought I was losing all independence. It took time for me to process that I never lost my independence; living at home ensures that I can live independently. Yet, I am surrounded by family who can help if I just might need it: opening zip lock bags or medicine bottles if Walgreens places the lids in the wrong direction; putting on my compression stocking or clipping my toe nails; carrying my groceries up the stairs or my full laundry basket to the washer. Or in the event that I have car problems, need to get Muffy’s food from the patio but it is dark outside, I accidentally break a dish while loading/unloading the dishwasher…help is there as well. It is safe independent living.

hermie¬†“I’m…independent!” (samefacts.com)

To maintain continual safe independence–while at home–I now wear a Lifeline necklace. Wearing this necklace does not change any part of how I currently live. I still get up in the mornings on my own; bathe and dress on my own; make myself meals and, of course, the morning pot of coffee; I can still write (chicken scratches), type (finger poke), text, and paint; I still climb up and down the stairs, even if it is a slow one-step-at-a-time; and, I still drive, run errands or go to church on my own as long as I have the energy and weather permits me to do so. ¬†The Lifeline’s purpose is to inform others if I needed help–the communication is accurate and efficient. The necklace works only at my home (garage, basement too) and outside property. Once I leave the driveway, I am too far from the sensor for any signals to send. ¬†However, being out in public, my chances of being all alone are quite slim. ūüėČ

When we first set the Lifeline in place, I was confused as to how I, personally, talk with the personnel over the communicator (set up in my parents room) as I am Deaf. I really do nothing, except push the button on my necklace if I need assistance. The personnel from Lifeline contacts my parents through the communicator and notifies them that my button was pressed, so they can check on me. If no one answers that machine call, they immediately start calling my emergency contact numbers in order; my mom’s cell phone is first, etc. In the case I fall and I am unresponsive, the sensor on my necklace cues in on this and Lifeline automatically sends emergency medical help. It is safe independent living.

Lifeline is unlike a regular 911 emergency contact. It doesn’t have to take a catastrophe of epic proportions for me to push my button for assistance. It can be something even as simple as accidentally breaking glassware while doing the dishes and not being able to safely step away from the glass; if Mom is outside working in her garden, how would she know I needed help? The necklace is also waterproof, so I wear it in the shower. It is only by God’s goodness and perfect timing that my parents were still at home on that Sunday morning when the first blood clot hit as I was in the shower. Because I was hyperventilating and had my left arm slung through the handle on the shower wall in order to stand up straight, the only way I could contact for help was to bang my right fist against the shower wall. At that time, I didn’t even think it was being heard. After a few solid bangs, my mom finally decided to check in on me. You can see the importance of having this in place as I continue to live independently.

Although Lifeline is often aimed in advertising for the elderly, I know for myself–and the family–wearing the necklace puts ease in the mind of constant “What if’s?” It reminds me of my times in¬†prayer. I don’t have to wait for epic catastrophes in order to present my requests to God. Prayer replaces the “What if’s?” with constant peace.

The Lord is my chosen portion and my cup;
you hold my lot.
The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance.

Psalm 16:5-6 ESV

3 Comments

Filed under Adjusting to NF2, Family Times, Uncategorized

When waters still

I’m not a person who dreams of a vacation at the beach. I am not one you would find fishing while sitting in a boat, kayaking down a river or swimming in the ocean, signing up for snorkeling lessons, or being a lifeguard; I¬†don’t even like swimming pools.¬†Maybe because we didn’t grow up near beaches, but did fish/canoe in the mountain lakes and there was a nice hot springs about an hour from home that we sometimes went to in the evenings, big bodies of water are not something I enjoy. They scare me: the depth of the waters and what is unknown underneath¬†is what it is. That and I can only backstroke.

This past weekend, we visited family in Wisconsin. My uncle is very passionate about sail boats and sailing, so it was no surprise that we discussed a sailing adventure, as it was going to be a full moon and the winds would not be as bad in the evening. I had to humble myself and remind my lack of enthusiasm (plus I was feeling extremely sick all weekend, but no excuse) that even though sailing was nothing I loved, it was something that my extended family did as a family activity and I should at least follow along and enjoy being with them rather than moping in negative thoughts.

We had to borrow their jackets, gloves and hats as we were not prepared for how cold it turned out to be, but once we layered up, we were on our way. Me, getting on the boat, would have been a Youtube video sensation. ūüôā Once I got on the boat, I sat and didn’t move until we made it back to the dock. I must admit, I had momentary jealous thoughts,¬†because my cousins were balancing on the front of the boat just hanging on to the sail’s ropes. You would never catch me doing that sort of thing!

We get to the middle of the lake and it is a pretty view…darkness had settled in for the evening and all around the shores were lights shining. Then the wind stopped. Inner panic set in and the first thing I think of is C.S. Lewis’ Voyage of the Dawn Treader in the Chronicles of Narnia series where they experience a time of no winds. Of course we were not in a huge boat and have modern technology, so after trying to get a natural wind..we ended up having to use the motor to return.

I did find just sitting there–although thinking Narnia thoughts–relaxing, and when I stopped panicking, almost peaceful. Then I remembered how opposite the situation was for Jesus’s disciples:

And when he [Jesus] got into the boat, his disciples followed him. And behold, there arose a great storm on the sea, so that the boat was being swamped by the waves; but he was asleep.¬† And they went and woke him, saying, ‚ÄúSave us, Lord; we are perishing.‚Ä̬†And he said to them, ‚ÄúWhy are you afraid, O you of little faith?‚ÄĚ Then he rose and rebuked the winds and the sea, and there was a great calm. And the men marveled, saying, ‚ÄúWhat sort of man is this, that even winds and sea obey him?‚ÄĚ Matthew 8:23-27

If anything, my weekend was much like the seas in this passage–just personally in all the¬†physical, mental and emotional. I am not sure why it all flooded in at the same time, but last night–once again crying myself to sleep–I told God that I didn’t know what to do about pretty much everything (mostly physical as that affects everything else.) I don’t even remember what my words were because I found myself in a deep, calm sleep. It was as if Jesus rebuked my waging body and instead¬†told my being, “Peace. Be still.”

I still woke up feeling the same physically…but felt refreshed mentally and emotionally.¬†There are going to be more storms in life…but I shouldn’t fear them: I am secure in The Lifeboat.

5 Comments

Filed under Adjusting to NF2, Books and Movies, Family Times

Homecoming: thoughts of heaven

This weekend was Homecoming Weekend for the university in town. Although it meant nothing to me (besides a fun parade and getting pumpkin chai with my sister afterwards), there were many class reunions during the weekend where the alumni had returned to their Alma Mater to celebrate their years of attendance and also seeing the vision of the school continue through the current students. This year was also special as it was the coronation of the new university President.

Homecoming is coming home. Ok, so maybe college is not home…nor your high school, but when you are saying “homecoming,” it is the welcoming back notion. I have to admit though, when I was in college, my term for “coming home” literally meant calling Mom and saying, “I am coming home.” Home. My mind has been thinking about this word…I think I started when we took a little weekend road trip to Toledo.

After my mom remarried, we moved to Toledo. I was about a year and a half old or so. We moved to Colorado¬†a few months after I turned six years old; my first memories of a “home” were from there.¬†As we visited¬†a few weeks ago, I¬†realized that all my memories of Toledo were of places,¬†such as the tunnel you¬†walked through under the main road to get to the¬†zoo; the Bob Evans we passed to get to our house; the house itself (I can still see the inside); the church we attended (but when we actually attended church I noted how much smaller the sanctuary was compared to my five-year¬†old mind);¬†MacQueens¬†Produce Farm and a really¬†awesome ice cream place¬†by¬†car¬†lot (which I¬†finally got the name: Jan’s.) I remember things like my classroom¬†at school, getting red tokens for lunch when you wanted pizza, learning¬†the alphabet, and being Mother Goose in the end of the school year play. I¬†remember singing a¬†Honey Tree song for church and playing in the turtle sandbox or eating orange pushups. But what I don’t place is people’s faces. I only remember them through pictures.

All that changed in Colorado. We moved in the summer,¬†meaning I started a brand new school that¬†Fall. The kids in my class were the peers I attended the rest of my school years with, graduating together¬†and continuing to keep in touch here and there¬†(thank you¬†Facebook.)¬†Home was no longer just things or places…it involved¬†people from town, school and church. Home, physically, was¬†the house…a place¬†where¬†I could be myself, protected from the world. In the bigger¬†picture, Colorado was home. I still consider it home. It is my Alma Mater.

Don’t get me wrong, I believe God moved me here for a purpose…especially in¬†the¬†area¬†concerning my health. I now have friends, live closer to my extended family,¬†a “home” church I have attended since the move and many open doors for my paintings. So why doesn’t it feel like home? Time may¬†play a part in¬†it:¬†we lived in Colorado for almost twenty years (seventeen to be exact).¬†Whatever the cause, I think it¬†fits into the season of the soul..this¬†current road I travel, with thankfulness.

Home brings thoughts¬†of heaven. As my body continues to decline, [yet¬†I am¬†still becoming all that God has planned for me in this life]¬†there are¬†times when I¬†do honestly question God in aspect, “I don’t know how much more of this I can handle.” Maybe I am using thoughts of¬†heaven as an easy way out of this worldly suffering. Heaven is joy…and I look forward to that Homecoming. There will be nothing like it in comparison. But here, in the now, I should not be praying centered around myself, but God. It is only then that this temporary home (my body) will find strength in thanksgiving, even in the suffering:

Man-centered prayers tend to ask, ‚ÄúHow can God help me with my problems?‚ÄĚ while God-centered prayers consider, ‚ÄúWhat is God doing in this? How can I join in God‚Äôs purposes here?‚ÄĚ This changes not only what we pray for, but also the way we¬†pray.

Tim Challies. “Persevere in Prayer.”

Philippians 4:4-7

~Mel ūüôā

*http://www.challies.com/articles/persevere-in-prayer?utm_source=feedblitz&utm_medium=FeedBlitzEmail&utm_content=5575&utm_campaign=Four-hourly_2013-10-02+12%3a15

11 Comments

Filed under Adjusting to NF2, Family Times, Random, Uncategorized