Category Archives: Adjusting to NF2

June 2, 2013 · 11:26 pm

Thursday’s doctor visits.

And it happened. May is now officially over and June has just begun. Crazy to think!

So I thought I would just recap from where I left off…Wednesday evening:

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest of the year, but as I gather my list of inefficiencies, I remember that when I can’t…He can.

I wake Thursday morning around my typical time, 6:10 a.m. This typical morning time started about a month ago…steroids can cause change in sleeping patterns. Lucky me, I get morning shifts where I see the sun come up and drink fresh cups of coffee at breakfast.

Thursday was no exception except our coffee was on the go, because we had to get down to Cincinnati for my doctor appointments. The day turned out to be relatively fast appointments and we even made it home before 4:30 p.m. which is a record breaker!

I came prepared with my list of questions and observations of things over the past three months. The doctors said I am doing well for the condition that my body is living. And considering the results of my MRI, that prior sentence is an answer to many prayers daily on my behalf.

The MRI of the spine showed stable, which is not what I was expecting, because it usually has more liquid in the tumor at the base of the neck growing in the spine. I asked if there was more fluid in this tumor, but the measurements did not show so.

The MRI of the brain is what surprised me. It showed tumor growth in the meninges areas, including the 5th nerve, etc. I asked out of curiosity if my doctor had a count of how many tumors were growing. He did not know, but estimated about 80% of the tumors in this meninges area were growing; a few as much as 3-5mm and that is the most growth I have had yet. The tumor on the left acoustic nerve has also grown. When I mentioned that I had more ringing and my hearing test results from last week, it made more sense of why my hearing has decreased in that ear rapidly over the past two months.
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Because I have had a lot of new side effects, I asked if the tumors from the brain are the ones effecting the rest of my body. It seemed strange to me that this could be probable. I guess I don’t know enough about the brain. Anyway, my doctor said that between the tumors in the brain, the one in my neck and all the ones in the spine down lower at the abdomen–it is extremely difficult to decipher which tumors are causing the problems.
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My initial thought was that they would increase my steroids, but because I have been experiencing certain side effects, they are keeping me on the same dosage I had been taking already. The steroids are just to help keep the pressure from the tumors down, but don’t have any control on the tumors as I also have thought this whole time.
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Right now, I do have a chemo treatment option. It is also the last option at the moment that I have as far as studied/approved treatments. It is an oral treatment, so I would take it by pill. We went over the possible side effects again. They seem tolerable if I would get any but most effects deal with the blood cell counts and high cholesterol. I could also get a rash, swelling in the face, sores in the mouth (things like this.)
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Thursday morning, my reading in Oswald Chamber’s My Utmost for His Highest talked about complete trust in Jesus: “Jesus Christ demands that you risk everything you hold on to or believe through common sense, and leap by faith into what He says.” I didn’t make my decision on this chemo treatment on Thursday. In fact, I still have to pray more about it and make sure that this is what God wants me to do. But one thing is for certain–I feel God had prepared me for that day, the news, the treatment possibility. I had a peace that I normally don’t feel at doctor appointments.
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I can’t say that over the weekend the peace remained as strong as what I felt on Thursday. There were times of doubt, fear of the unknown, hard questions to ask myself. But when the time comes for my decision, I want to know the fullness of His peace like I felt on Thursday. The peace that passes all understanding and say, “Whatever my lot, thou hast taught me to say, ‘It is well! It is well with my soul!'” (Horacio G. Spafford, It is Well with My Soul. 1873.)

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May 29, 2013 · 5:16 pm

List of my insufficiencies

Kermit. Miss Piggy. Animal. Rowlf the Dog. Beaker. Fozzy Bear. The Electric Mayhem.  Statler and Waldorf. Rizzo the Rat. The Swedish Chef. (Just to name a few.) If you have ever seen any of the Muppet movies or The Muppet Show episodes, I am sure you can envision the characters, the voices, the humor. And sometimes God uses the strangest Muppet analogies to give me humor in spite of my insufficiencies.

This past weekend, I started my notes of things that need to be discussed with the doctors tomorrow. I see a team of different specialists: my main doctor for the MRI results and treatment plan; a pain team management doctor for the tumors in my hands and the pain in my neck/upper back; a follow-up with my doctor for the blood clot and a few others. It is a long day–early to late in the afternoon with all the evaluations being meticulous, but repetitive. There are the talks of future possibilities, different treatment options available, different steps or things to watch. My brain about half through goes into standby. So I started bringing a list. I do better with lists. I am a note-taker person. It helps me focus and understand or stay awake. 🙂

So this list is all the changes that have occurred in my physical body since my February visit. After my scribbles of a list was finished, I put my pen down and cracked my knuckles. (I know you are not supposed to do this, but it feels good and I figure my fingers are already worse off anyway.) I look at my hands and start to laugh. Out of nowhere I remember my MRI experience from last Thursday. That day, I thought I would take a nap during the scan, but the technician asked if I wanted a movie. I looked at the list anyway and figured I would just watch something fun and that I have seen before so if I fell asleep then it was no big deal. I skim the options fast and choose what I see as “Muppets.” Now assuming this was The Muppet Movie, I get cozy with my arms strapped in and headgear set in place. The movie starts and this is no Muppet beginning…it is Muppets from Space and I think, “Oh boy. I haven’t seen this in forever!” The first fifteen or so minutes, I was breathing so hard through my nose, because it was the only way I could keep from laughing!

I did end up falling asleep during the movie, but I don’t think I would have ever thought of this on my own if I had not watched that particular movie, because unlike the other movies where Kermit and Miss Piggy are the lead characters, this time it was Gonzo and Rizzo the Rat. Gonzo. Classic character. Classic nose.

gonzo http://www.imdb.com/media/rm2902164736/tt0158811

See that nose? If you are wondering how my left ring finger now looks as it continues to curl in–think Gonzo’s nose. It matches. Find the humor in the analogy and laugh. It’s ok, because I already did.

In making my list for the doctors, I found the “head and shoulders, knees and toes” song was the best way to organize my list so I started with my hearing; then my neck and upper back–more pressure and getting hard again to stand up straight or hold up my chin; my arm and hands–besides the “Gonzo nose” finger, my left middle finger has significantly started to curl as well. Whereas my right hand just went completely numb to my elbow making things like holding pens, buttoning my pants, putting in bobby pins, holding cups or texting, holding my toothbrush, tying my shoes, pouring coffee from the pot and typing more of a daunting task than they should be. My bowels still deal with constipation; and my legs/feet are weak. I can hardly get up off the floor or when I bend over to pet Muffy, if I am not holding on to something then I easily loose my balance and occasionally just fall over. Strange though, I have not had any pain spasms–Charlie Horse cramps in the legs–but no pain spasms!

I usually look at my list and I see my life becoming less independent. And if there is one thing in life that would be the hardest to surrender, it is my independence. It was the reason last year that I struggled so hard with moving back home. But where I could only focus on the losing part, God had bigger plans and he has been helping me to see that I can still live fully on my own. I just have a few speed bumps that take a bit slower t0 get over. Yes, there are days when I am completely frustrated at my hands or cry and say, “A 25 year old should not have this problem!” (like not being able to button my pants.) But to see past my insufficiencies helps me to see how blessed I truly am, because I have resources available to help and when the resources can’t, my family can.

Over the past few months, things of this have been changing: I got my own plates, bowls and cups that I can hold better; I have my special silverware and we just ordered more because I constantly use my fork and spoon now as it is. (See utensils here.) We also just ordered a button hook so I can button my pants; coiler elastic shoelaces so I don’t have to worry about tying my shoes or bending over when they come untied; and I bought hairbands so I don’t always have to use bobby pins. If I go clothes shopping, I have to be able to put the outfit on myself or I don’t buy it; I went back to wearing dangling earrings, because most often they don’t need backs so I don’t have to worry about trying to hold the tiny piece of metal; I gave away all but a few cd’s as I came to a peace about losing my hearing; and have been getting really good at finger poking at the keyboard when my hands otherwise are too tired or cramped to type in a normal fashion.

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest 0f the year, but as I gather my list of insufficiencies, I remember that when I can’t…He can.

I think I can’t, I think I can’t
But I think You can, I think You can
I think I can’t, I think I can’t
But I think You can, I think You can
Gather my insufficiencies and
place them in Your hands, place them in Your hands, place them in Your hands

~Relient K, “For the Moments I Feel Faint”

Other resources:

http://www.arthritissupplies.com/good-grips-button-hook.html

http://www.arthritissupplies.com/coilers-elastic-shoelaces.html

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May 28, 2013 · 8:30 pm

“Awaiting a Cup of Coffee” and other ramblings…

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It’s like waiting for a cup of coffee.

And while I feel like I sit around waiting for the brew button to shut off, I am finding that the cup of coffee comes with preparation. I wake in the morning and come to the kitchen. Lights turn on and the cupboard to the stash opens. I place in the filter and measure the fine grind coffee, often adding an extra pinch for a strong cup. I add water, push the start button and watch the coffee begin. The smell enters my nose. I get excited as I pull out a mug, the creamers, the spoon to stir. Then I wait.

Most days, I feel like I too am just sitting around waiting for the signal to turn off so I can grab my cup and go. Do something meaningful, something big. But God is showing me that while I wait for His timing on a job, there is work to do. There is preparation. I need to let go of my expectations, impatience, doubts that form in my limitations.

Then it happened. This morning the light came on and the door to my heart opened. I filtered my thoughts and measured the cost of saying “Yes, I will wait for the Lord.”  I added in His promises and watched the day begin. And in seeking Him, the sweet aroma of peace started to fill my body.

And I wait.

Psalm 40:1-5, 16-17 ESV

To the choirmaster. A Psalm of David.

I waited patiently for the Lord; he inclined to me and heard my cry. He drew me up from the pit of destruction, out of the miry bog, and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. Many will see and fear, and put their trust in the Lord.

Blessed is the man who makes the Lord his trust, who does not turn to the proud, to those who go astray after a lie! You have multiplied, O Lord my God, your wondrous deeds and your thoughts toward us; none can compare with you! I will proclaim and tell of them, yet they are more than can be told…

But may all who seek you rejoice and be glad in you; may those who love your salvation say continually, “Great is the Lord!” As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God!

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May 23, 2013 · 11:55 pm

Half the Results

It is that time again…after three months of no doctor appointments (give or take a few random ones), today was my annual MRI and hearing test day. I only have half the results as I will find out the results of my MRI next week when I see my team of doctors at Children’s in Cincinnati.

My results are from my hearing test. I had actually prepared myself (maybe prepared is too strong of a word)–hmmm. maybe I should say, “wrestled with my emotions” on this subject weeks ago. It first started when I was on the spring break vacation with my family. I felt isolation. There were the large family dinners with company. In those moments, I felt anger and frustration. There were the nights I laid in bed and talked to God and just asked Him how I was going to live with all this new change. I felt sadness. There were the moments my family signed to me and I understood; practicing a language brought laughter.

I didn’t really have any emotions today going into my hearing test. Well, ok, maybe one slight assertive emotion: I go in and sit in the chair and we start discussing how my hearing has been and changes I have noticed. In the conversation I bring up my well-reasoned and thought out explanation of why I choose not to do the test where they read the word but cover their mouth. I say, “I just make up words.” Not on purpose, but I have no idea what the word is. I just think: that sounded like it started with a “C” and then say a word that it could be. Think of words! My probability of guessing the right word is off the charts! Which is why I always get zero correct when lips are covered. Then we test where I can read lips. A much more enjoyable experience! Sadly though, my assertiveness does not compare to set procedures, so I had to take all the word tests. I am sure the audiologist does not hear cases like mine often, since I am so old compared to the other patients there, so I am thankful she took time to hear my argument. 🙂
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My right ear has stayed the same since February which is good news! The tinnitus today was not that bad, so I am glad for that too as some days it is SO loud, I feel that affects my hearing. I have an appointment next Friday with the Hearing, Speech and Deafness Center to get my hearing aid on the right side adjusted to a higher volume of hearing compatibility, because I don’t hear anything out of my left. The audiologist said, “It is not deaf yet,” because I could hear the beeps at two different levels (which I was not expecting). I was shocked! When I asked, she said it was at the highest level…so if you had regular hearing, I wonder how loud it would be! Basically, in order to “hear” something out of my left ear, it would have to be a volume of epic proportion–and at that point I still have my right ear so how would I be able to distinguish left from right?
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I have been going without my left aid most often as it is a waste of battery. I usually just wear it in order to change the settings for the right as my right hand is so numb that changing the settings with it gets frustrating. At the present moment this is what I will continue to do. We did discuss very briefly the fact that cochlear implants is still an option if I choose. I previously had discussed with several doctors and did my own thinking and praying, listing of pros and cons on the subject. Right now, I still don’t have a peace about it, but I also feel that it is time to relook at my list, research and pray again about the subject just to refresh my knowledge. It is one of those situations I often wish that there was an easy answer for–but if the answer was easy, where would my faith be?

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. For a people shall dwell in Zion, in Jerusalem; you shall weep no more. He will surely be gracious to you at the sound of your cry. As soon as he hears it, he answers you. And though the Lord give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you, saying, “This is the way, walk in it,” when you turn to the right or when you turn to the left. ~Isaiah 30:18-21 ESV

That is all I have today…more to come.

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May 20, 2013 · 4:55 pm

Two Ways to Exercise

This morning, my exercise routine was vastly different from what I participated in on Saturday morning: this morning was the gym; Saturday was a two-mile Fun Walk through Xenia to support the Miami Valley Women’s Center. Two ways to exercise–two ways to view life.

I have taken up exercising at the gym here in town. It’s indoor track is smooth with lanes so I can practice walking in a straighter line than what I do on the bike path. There is too much freedom on the bike path; I wobble uncontrollably all over the path. It is not only is frustrating for myself, but I am sure for the bikers or rollerbladers who are coming up behind me, ready to fly past. Thus, I can, but I resolved not to, walk the bike path alone.

And even when I do walk the bike path with someone, I take my walking sticks that I termed, “rod and staff” (Psalm 23:4). Who would have known that these trusty metal sticks would be the extra pair of legs that I need most often when I walk outdoors? They traveled all throughout Greece, hiked mountains in Colorado and now trod flat bike paths, occasional treks through our 3-acres of grass in the early morning or through town on the rough terrain otherwise known as the sidewalk. You can see why I have decided to take up the gym…it is conveniently safe, air-conditioned, and a time of socialness with the senior citizens of town.

At the gym, I usually walk around the indoor track–maybe a half mile or so–then use the stationary bike. It is like multitasking. I bike and read at the same time! In fact, I think I get more exercise this way, because I get lost in my book that I forget to check how long or how many miles I have been pedaling. I have also taken to the bike, because my left leg is now numb. Not that it affects anything other than just feeling like “muscle stiffness,” but being on the bike gives my ankles a rest: It gives my right ankle a rest from twisting and it gives my left leg a rest from taking the weight that the right ankle should carry on its own. The bike gives my back a rest from the “S” posture that the tumors are causing; and it gives my neck a break from tirelessly trying to hold itself in an upright position. When I bike, I rest.

Contrast to Saturday. It was hot, humid and threatening to rain. I was up early so I could eat a solid breakfast and grab a cup of coffee before heading out. I made sure I had everything (like my own little First Aid kit)–rod and staff, an apple, a SoBe Life water, my baseball hat, band aids, my registration papers and pledge money, and a tiny wallet with medical information papers/driver’s license. All checked and ready to go! I get to the Women’s Center in plenty of time to park, get in and out of the registration before lines start piling up and grab a cup of orange juice while making casual conversation with the volunteer at the table. I was excited. I had only ever been on committees to coordinate events like this or volunteered otherwise at the big 5k events.

I did not know what to expect really. All I knew is that I was determined to walk the full two miles. That might sound ridiculous (it is only two miles!), but considering two nights prior I could hardly walk a mile on the bike path with my parents as my neck was causing me so much strain, standing upright hurt to almost breathe…I literally strained everything on my rod and staff to make it back to the car. Good workout and I fell asleep fast that night when I got in bed, but I quickly reminded myself that there was a reason why I exercised in the morning rather than the evening: my body has more energy, better posture, better mental determination. I have to admit, I like being a morning person. 🙂

I get nervous when I walk around a crowd with my rod and staff. They help me maintain my balance, but they sometimes cause problems. Luckily, I did not trip anyone as we got started, but I did accidentally hit a lady’s ankle from behind…must have felt like a shopping cart hitting your ankle sort of feeling. I felt horrible. She did not turn around but I called out a sincere apology anyway. We get going around the first block and my mind is already thinking that they are going to take us to the bike path and then we follow a trail there and then turn and come back. I mean, after all, with all these kids and baby carriages that would be the safest route.

Nope. We end up trekking through the busiest streets of town on the roughest sidewalks–past McDonald’s, Taco Bell and Wendy’s drive-thru intersections and more. This was NOT what I was expecting. We get about a mile down and I am walking by myself, which I enjoyed. The “trail” was only marked by little signs that had arrows, but I could see the walkers in front of me by a few hundred feet so I was not lagging too far behind. A small family caught up with me by the time I rounded the main intersection in town. We exchanged a few words and they continued on after I stopped to use the restroom.

When I came out, there was a large group of families with baby strollers making their way back so I joined, but found myself feeling like my rod and staff and wavering balance were getting in the way so I passed and walked a bit quicker to the next light where I ended up having to wait to cross the street. A different group caught up with me at this point and when the light said we could go, I was in the front. I started to feel pressure–I am not claustrophobic but when people follow me, I feel their eyes watching my ankles and I get nervous…which I am sure is all just in my head, but as I get up to the next curb not only do I feel this nervousness, but also the sidewalk is now slanted to the right (Why? I have no clue!) I tried to regain my balance as I felt myself starting to shift downwards but ended up landing gracefully in the bush instead. I tried to get myself up, but was having a hard time with my rod and staff flying in different directions and the slanted sidewalk. I feel a hand grasp my left elbow which helps me get up. I give a big thanks then add, “At least I fell in the bush”–while thinking it was genius that I had packed those band aids just in case I had a worse fall.

The last quarter-mile was this uphill, slanted, cracked sidewalk journey that made me start to wish that I was just done. That is when I decided to think of other things. I thought of how some days in life seemed like this walk–full of dangers at the intersections, rough terrains, heat and sweat like trials and tears–not like my safe, air-conditioned gym. I don’t know why the two miles caused my body to react all weekend in the way that it did, but I do know that crossing the finish line seemed victorious; my apple on the way home seemed sweeter; my Saturday afternoon of reading with my feet propped up seemed more relaxing; and my nap yesterday afternoon was a deep satisfying sleep.

I will still exercise in the gym, but I now have a greater appreciation for what it provides. Just as in life–there will be pain, but it will give me a greater appreciation for the days I have been given rest; there will be tears, but it will give me a greater appreciation for the days I have been given joy; there will be days when I fall down, but it will give me a greater appreciation for when I have been given the grace to stand back up on my feet.

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed. (2 Corinthians 4:7-9)

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May 14, 2013 · 7:45 pm

Little Joys!

Have you ever stopped for a moment to listen to the water as it drips out of the faucet? What about the sound your sheets make when you ruffle them as you make your bed in the morning? The sound your fork or spoon makes against the dish; the taps your fingers make on the keys when you type; the brushstrokes when you paint on a canvas; the click of your eye shadow case as you finish getting reading in the morning; or the sound of pages turning as you read a book? Little joys!

Yesterday I got my hearing aids fixed! 😀 Funny is perception. It has only been a mere three weeks since they went from usable to unusable overnight. It seems much longer than that! The hearing aids currently are back to where I had them set before–I have them turned up all the way though, as we did not adjust any of the settings due to my last hearing test being in February. At that point in time, my left ear had gunky-dark fluid behind the ear drum and I received some medicine to see if that would clear out. I had my ears checked once and it seemed to be helping slowly. It was not until after the spring break that the tinnitus (insane ringing in both ears) became increasingly loud. So there is much difference in my hearing since February.

Changing the levels now seemed in wrong timing, because I have my MRI/hearing test next Thursday the 23rd. My regular doctor appointments are the following Thursday the 30th. As far as my hearing test goes, I am thinking my left ear has not improved any even if the gunky fluid is out from behind the ear drum. Even with my hearing aid in, I am not hearing much (though I placed it in first this morning and then shut the lid to the case and heard it clear as day…guess that is a good thing!) I do know, however, that I depend on my right ear/hearing aid the most. It used to be the opposite, but I can tell already that my hearing aids are helping…maybe n0t improving my balance but I have not run into as many walls today as I round the corner–little joys! And, after going three weeks with no hearing, I think I did improve my lip-reading and we started incorporating more sign language at home.

My dad is sneaky. He found this website where you can look up words you need and they give you a video of the sign. Last weekend, we had company and at Sunday’s lunch we had the typical tuna sandwiches, chips and salsa, carrots and grapes and cookies for dessert. I see my dad pull out his phone as the others at the table are in conversation. Not thinking anything of it, I return my attention back to lip-reading but sort of just sit in a daze. (I get bad at that. I stare like I am lip-reading but I am not paying attention at all in my mind! I need to work on staying focused!) Anyway, dad never waved for my attention or anything, he just moved his hands. I knew it was a sign, but since he did not mouth the word, I had no idea what it was. Instead of guessing or pointing aimlessly at the table, I just said, “I don’t know what that sign is.” It was grapes!!!

I should have remembered. I learned it in ASL I. Although dad was trying to be sneaky and not ruin the conversation at hand (I think I did 🙂 ), our table then erupted in sign–from discussion of ASL vs. ESL or SEE to guessing the word being signed (as my dad passed on his phone to my sister who put the website and my memory to good use!) Sometimes these conversations are awkward for me as I feel I should be the one to know all the signs (I don’t), but because our guests both had reference and previous experience to sign language, we were able to work through and remember words with sign together.

During these past three weeks, I now have experienced both sides of the spectrum in terms of hearing and hearing loss. Just the other day I read this quote. I think it sums up my thoughts the best way possible: “Heard melodies are sweet, but those unheard, are sweeter.” ~J0hn Keats.

I am happy to hear, thankful to hear, liking to hear…and I think it is because I had none–that I appreciate it more! Little J0ys!!

PS. This s0ng came to mind this morning:

Carolyn Arends, “I Can Hear You”

Leaky faucet dripping in the kitchen
Rubber squealing — watch out in the alley
Mr. Marley’s probably late for work again.
Birdie singing — telling me to get up
Such a soothing sound floating on the wind
I just keep listening

Funny how You speak to me
In such mysterious ways

Chorus:
I can hear You
I can hear You
It’s so amazing how Your voice keeps breaking through
I can hear You

There’s a church bell ringing out the hour
Like an old friend calling through my window
With the laughter of the children playing down below
You’ve got a way of getting my attention
In the rhythm of life, everywhere I go
Somehow You let me know

If I’ll only stop to listen
You’re in everything

I can hear You
I can hear You
I can hear You
I can hear You

Music video: http://www.youtube.com/watch?v=GtsWtNS-3Og

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May 10, 2013 · 8:29 pm

In the Kitchen

I think my sister was right: “It is so weird to see you put black olives on your sandwich.” We were at Subway and I was loading my turkey melt with veggies (might I add avocado!!! Yum!) It is a little strange, considering that I spent my childhood trying every possible way to get out eating my veggies at dinner. “They are getting cold,” Mom would say. Truth is, I did that on purpose. They tasted more tolerable when cold.

It was not until after college that I started to eat more outside my normal eating habits–maybe partial roommate influence (positive peer pressure if such an oxymoron exists) and the tumor growing on the 5th nerve causing a decrease in my smell–my view of food changed. No more “plug your nose while you eat…you won’t taste it” sort of fun. This is now my reality. Having no sense of smell changes your eating habits.

Strange though, I can still smell coffee and can tell when there is BBQ cooking. I can taste the seasoning of Mrs. Dash and sea salt if large portions are applied to the food. I noticed I still tasted the ketchup on my potatoes tonight at dinner and the blueberries in my muffin this morning. So not all is lost.

Growing up there were a few vegetables that I disliked the most: beets, asparagus, peas, and acorn squash–but especially asparagus!! We did not eat it often but when we did, it was awful! Fast forward to the year 2010, my roommate was having a birthday potluck/game night at our apartment. I had to work a late night shift, so by the time I got there, food was already served and the game was about to start. I remember walking in and smelling bacon (this is a few months prior tumor growth, so I still had regular smell at this point.) As I get my plate full of food, a friend asks if I want some of what he cooked: asparagus wrapped in bacon. I agree, but winced because I knew I did not like asparagus. As I ate it, I realized the bacon took most of the flavor. If I were a food critic, I would have starred it with a 4 out of 5 stars–only because the taste of asparagus was still not the greatest. That was the last time I had eaten the vegetable.

It might just be that time of year–the garden recipes, grilling tips for your patio parties, fresh “make in minute salads”–and I don’t know how or where asparagus fits in all that, but it has been a reoccurring word ever since I discovered a simple recipe in a book that I finished last week. “I can cook this!!” I said: asparagus, olive oil, sea salt and pepper. Asparagus was on my next shopping list. And it was weird. 🙂

Tonight we decided to put it with dinner: tilapia and potatoes and the asparagus. As I am trying to cut off the end, I am getting frustrated at their stems. “It is like bamboo!!!” Not that I have ever tried bamboo before but I was making a point. Mom suggested the food scissors instead of a knife. Brilliant. This is why I cook with her present in the kitchen! I start spreading the olive oil on with a brush that you use for applying barbecue sauce to your grill meat, while offering my next statement with a laugh: “Painting asparagus!” I had just come from the basement where I had been painting. Guess it was still fresh on my mind.

I add the sea salt and pepper, then it was ready for the oven:

DSCN1818

Dinner turned out to be a delicious meal! Best part is, I can now add asparagus to my list of “veggie likes.” I think in part, because I did not taste the “asparagus” taste that had caused me to give a 4 out of 5 stars during the last experience. I chewed and looked outside thinking. “Hmmm, it tastes like green beans to me.” Then I add that I have a list of other vegetables I want to test–first up is eggplant. I cannot guarantee the same positive experience, but it is worth a try. Maybe that is the blessing of losing my sense of smell and altering taste: it takes me out of my eating comfort zone and into a kitchen full of possibilities.

“Oh, taste and see that the Lord is good! Blessed is the man who takes refuge in him!” Psalm 34:8

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May 6, 2013 · 11:50 pm

Even in the grey.

In the very place where God has put us, whatever its limitations, whatever kind of work it may be, we may indeed serve the Lord Christ.

~Elizabeth Elliot

This morning was lovely; 6:45 am and I am wide awake. (Ok, the Charlie horse cramp in my right leg is not the greatest alarm clock, but it got me out of bed.) I go to the kitchen to make a cup of coffee and notice how bright it is outside. No sun…in fact it was raining. The colors were vibrant. The grass, trees and shrubs look greener; the blossoms a deeper shade of pink; the tree swallows more royal blue as they flew in big sweeping motions around the deck and the robins a deeper chestnut as they hopped in the grass feeding on bugs. The only thing that looked the same to me was Muffy–but we’ll give him some slack. 🙂

As I feed Muffy his breakfast, I breathed in. Refreshing. The grey skies reminded me of limitations, as even my own physical disabilities were on my mind the night before. It is easy to see the color grey and connote it with seeming dreary, as if it is not possible to think that a day without blue skies and sunshine can be beautiful. But it was. In fact, I don’t think any amount of sunshine or clear skies could have replaced the atmosphere that lingered today. Life can seem grey. I question what I am doing or will do in the future; I question about health or finances, about where to serve or what book to read next. It does not have to be this way; I was not created to live this way. I live in beauty, because in the days of grey, I have been given hope and a purpose. (Jeremiah 29:11-13)

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April 29, 2013 · 11:59 pm

Life’s a Road Trip

Road trips. I love road trips. Usually I am the backseat driver, unless I am needed up front to drive (which is not very often) or to sit as co-pilot and make meaningful conversations to keep the driver alert. Because I had my nose in a good book last week, I opted to take the backseat. We left Thursday and spent the night a few hours down the road so by Friday we only had half the time left to get to NY.

We get to the hotel and I am laying out my things for the next day and start getting ready for bed. I take out my hearing aids and place them in their safety container; then I put my container in my purse so I do not forget them in the morning. (Can you imagine!?) Friday morning we grab drive-thru for breakfast and officially set off on our way only 9 minutes behind the schedule we had hoped for the day before (I was so proud!) Now, you have to understand…freeways, airplanes and the constant murmur in the background at the grocery store gets very annoying to hear. I usually have my hearing aids on the second setting on road trips when there is another person in the backseat with me so I can keep in conversation and I keep them at this setting when I am shopping. I just take them out in airplanes. Because it was just me in the back and I wanted to read, I left my hearing aids in their container.

We get about 40 minutes from my grandparent’s place (destination) and I am on the last page of my book. You also have to understand…I normally shy away from a few genres in literature: Sci-fi, romance novels and animal (pet) memoirs. But my latest trip to the public library had a shelf of books about animals and gardens–in theme with springtime, April and Earth Day. A few caught my eye, with this one in particular, because the owl on the front was so fuzzy and cute I just had to read it. It turned out to be a very educational read, but it was entertaining all at the same time. After two hundred and some odd pages, I am absorbed in the life of this biologist and her owl that I get to the last page and feel it coming! Yeah, the tears. Inevitable!

If you are like me and don’t normally read animal memoirs or watch the nature show, then hope you can sympathise with me on this for this very reason: tears. Not that crying is a bad thing–I think it shows how great the book is, because the author was able to relate that emotion to the reader. But when I read books that I know will make me cry, I usually like to be in my room. Alone. Yet here I am on a NY freeway trying to control my emotions that I really was not expecting until I started the last chapter. I finish the book and decide if I distract my thoughts from what I just finished reading then I would be fine. I mumble up to the front that I am getting a Charlie Horse cramp in my left leg and I need a rest stop. Up until this point I have somehow managed to keep the tears at least in my eyes, but as soon as my mom turns around to see what I need, one look and I burst out the ending of the story in one grand sentence and then sob profusely.

Mom and I finish our tiny chat about the book and I dry my tears. I figure it is time to put in my hearing aids. I first put in the right hearing aid but don’t hear the “ring tone” that announces to my ear that it is turning on. I put in the left (which is no longer my dominating ear but practically deaf ear) and can’t hear much of anything. I take them out and replace the batteries. Nothing. I know my left aid is working but I pass up my right aid to my mom to see if she can hear the ring. Nothing. Now I am no longer sad but a bit frustrated. What am I going to do? I just had to put them back in my case and back in my purse. “I will just have to lip-read today.” Sometimes my hearing aids just need a break and then the next day work again, and because I have had to turn them up to the highest setting most often as of late, I figure if I just try tomorrow then maybe they will work. The timing in this is not great. First, a whole weekend with my grandparents. How horrible would it be not to hear? And second, I just finished this book about barn owls and other birds who have such precise hearing that they can even hear spiders crawling up the wall. Surely adds to my frustration.

You may have guessed by now–but if not I will tell you: my hearing aid is currently still not working. I avoid the term broken, because it could be a numerous amount of factors that does not necessarily mean the hearing aid is broken but just needs a few adjustments, like new sensor pads or sometimes my ear wax will get inside the aid and cause it to not work. I am hoping it is not broken. But I did survive the weekend! Actually, I think I did quite well. I think right now I just want to have a pride moment and pat myself on the back. But I also give a lot of praise to my parents and even my grandpa who took time to sign little words (even make them up just on the spot so I would get the word at the moment) and lots of finger spelling. 🙂 Most of one dinner conversation consisted of the game “Guess the Word in ASL.” That was fun. And we toured a lighthouse on Saturday, so we looked up how to sign the word. All I knew was boat.

We finish the fabulous weekend and life goes on. I did not do anything different today than if I was wearing hearing aids. I had a meeting in the morning to discuss job potentials. The lady knew ASL, so there was no interpreter, but I think I talked and lip-read more than I signed. I notice without my hearing aids in, I am more verbal to say, “I am Deaf” and let people know why I am not understanding one word or accidentally interrupting a conversation or starting one way off subject. Deafness has blocked my hearing senses, but I noted to myself this weekend that my eyes are going to have to take more responsibility: more observation of my surroundings especially in social settings.

I did not think my life would ever come to this time…this moment when I had to face the reality of my deafness. But in a way, this weekend helped me more than it did frustrate me. I learned in part from my grandpa. He is a godly role model. His actions, faithfulness and servanthood shine louder than his words. He lives out the famous Mark Twain quote: “Kindness is a language which the deaf can hear and the blind can see.” He cares for my grandma everyday…even all hope seems lost. He is like Samwise Gamgee:

Frodo: I can’t do this, Sam.
Sam: I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there’s some good in this world, Mr. Frodo… and it’s worth fighting for.

~J.R.R. Tolkien, The Two Towers

We may not be fighting off Orcs or battling for Middle Earth, but I know even in Deafness that there is good in this world. My story does not end here. And when the new Day comes, it will be worth everything! I hold on to that hope: “[But] we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope.” Romans 5;3-4

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April 25, 2013 · 3:22 pm

All around the world

DSCN1145Love the Earth

This morning I wrote a short document for my friend about how knowing others with NF2 has impacted my life. This circumferences the “knowing on a personal level” along with “knowing [having knowledge of] others with NF2.” While I did not take much time for argument in my case, I did propose that personally knowing others with NF2 has had a greater impact in my life.

However, there is this branch (like a sublet category) in the “knowing [knowledge of] others with NF2” that I had not contemplated until this morning. The thought came: I did not know there were others around the world who lived with the same disease. It was not until I started this blog last year that these facts surfaced. How did I go almost ten years not having any thoughts that there could be others around the world who are impacted in similar struggles/disease that I face every day? The thought just blew me away. I feel almost embarrased to be so honest to say that!

A fellow blogger wrote this morning, “Choose to look at something differently, and you could just get something extraordinary,” (Kelsey Reinhart.)* I am not implying that NF2 is extraordinary (just rare)…but when I look at the world–how big it feels–knowing that there are others with NF2 around the globe who live each day just like me, suddenly makes the world seem a bit smaller. I am no longer in my mind saying, “I am the only person in the world who faces these challenges.” Granted, every NF2 patient is affected differently by the tumors, treatments, surgeries and side effects, but we have a common understanding. And that makes facing the daily challenges in my life with NF2 a bit more of an extraordinary experience.

*http://kelseyreinhart.wordpress.com/2013/04/25/perception-is-everything/

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