Category Archives: Muffy

The Book: “NF2: Our Journeys”

Question: Where has this year gone? Here we are in July already! Stop and think for a moment on all that you have done in the past six months. If you are like me, you may be wondering how you are going to write your Christmas card this year; thankfully, we still have another six months to figure that out. 🙂

As I reflect, there is a list of major events on my calendar: blood clot, hospital trips, Physical therapy, paintings, a few visits to see grandparents, Spring Break vacation, books read, made new friends, turned another year older, overcoming new physical limitations, visited my sister a few times in Columbus and Megan visited from Colorado…and last but certainly not least: I wrote about my life (limit 1500 words) for this book NF2: Our Journeys.

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January 2, 2o13–a representative from The Children’s Tumor Foundation contacted me through my blog in response to a letter I had sent to the foundation at the end of the previous year. Three days later, she contacted me again. The Children’s Tumor Foundation works alongside a foundation in the UK called, Children With Tumors. There was an opportunity for those with NF2 to participate in this publication (sharing their story)–all started by Jessica Cook who also lives with NF2.

January 9, 2013: Unexpected blood clot.

January 10, 2013: In hospital and I get an email from Jess. This is where it began.

I can count on both hands how many people I have known/met personally that live with either NF1 or NF2. Yes…less than ten people. It was only when I started this blog that my social group of “meeting” people who live with NF2 expanded slightly. When Jess first emailed me, it was about the book. I had no idea over the next five months I would not only get to be part of this amazing opportunity to share my journey of living with NF2, but also make a new friend in the process.

January and February were crazy months of doctor appointments, physical therapy and painting. I had until the end of February to write my story. Not that I procrastinated, but a combination of all taking place those months and just a lack of not knowing what to say, I finally forced myself to sit down a few days before the due date and write. I submitted it the day the rough drafts were due. By this time, Jess and I had been emailing back and forth and she responded to my draft with praise saying that it was what she had expected. That put my nervousness at ease.

My story was edited (spelling, grammar, punctuation) by Jess and a few of her friends and then sent back to me to read and review. I asked my cousin, who is known for her exceptional editing skills, for help on a few sentences and wordings–then satisfied–I sent it back to Jess saying it was final on my end. I picked my “author name” for the introduction and submitted a picture. (Muffy is famous! 🙂 ) By this time, I now had told my family about Jess and the book; I had mentioned it to my doctors in Cincinnati and wrote about Jess to my grandparents. Just talking about it all was exciting!

Getting to know Jess over the past six months has been both encouraging and inspiring. We never started our emails from the past (full life story)…we started right where we were at the moment. Sure, past events have come up in our conversations, such as, physical changes we have endured, emotional battles we have overcome (such as isolation and self-image struggles) and how living with NF2 has broadened our life’s story in ways unimaginable.

Jess’ work in the UK through her social advocacy website and group–Can You Hear Us?–has inspired me to be connected. I have been reading other blogs from people living with NF2 and (though good intentions) need to make a better effort to seek out the Deaf community here. It has also helped me to seek out the possibilities when life hands you disabilities; I believe God placed this book opportunity in front of me for a reason–because these past six months, I have seen my body change and weaken faster than the other nine years of living with the disease combined.

I say it often, but it is the truth: It is only by God’s strength and mercy that I can still function what I am. And He has shown me in abundance the past few months that what I currently struggle with physically is not the end–there is still more to my story waiting to be told. There is always room for hope…

My story: I seems to be a re-occurring phrase over the past few weeks. A few days ago I thought of the hymn “Blessed Assurance.” I think Fanny Crosby wrote what I feel about my story best:

Perfect submission, all is at rest
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

This is my story, this is my song,
Praising my Savior, all the day long;
This is my story, this is my song,
Praising my Savior, all the day long.

– – –

To buy a copy of the book:

http://canyouhearus.co.uk/nf2-book/shop/

(Shipping is included in the book price and PayPal converts the total for those ordering from the United States.)

For More Information:

Cook, Jessica (producer). NF2: Our Journeys: A collection of inspirational stories written by people with NF2. Lavenham Suffolk, UK: canyouhearus.co.uk, 2013.

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips, Muffy, Paintings

Thursday’s Terrible Tumble

Two are better than one, because they have a good return for their labor:
If either of them falls down, one can help the other up.
But pity anyone who falls and has no one to help them up.

Ecclesiastes 4:9-10

I wouldn’t call it ironic, but yes, I did read this passage of Scripture in the early morning hours with my cup of coffee.

The day seemed to start so typical in routine. Awake by 7am-ish, make a cup of coffee, feed Muffy breakfast, watch a deer eat the farmer’s soy beans, eat my own breakfast and morning readings. This morning, my intent was to get to the gym for an exercise before coming home to finish a few lingering projects. I should stop planning my days.

I leave a note for my sister that I headed to the gym with a salutation, “Be back soon, xo.” I had used the bike yesterday, so today I wanted to walk two miles in preparation for Sunday’s NF Walk in Cincinnati in corporation with raising awareness and funds for research with the Children’s Tumor Foundation. We have known about this for months, but I was not fully interested in taking part of the event until I participated in the Miami Valley Women’s Center, “Walk 4 Life,” in May. Shortly after this, I emailed my family to see if they were interested still in the idea, as I would only be I interested if someone walked with me. I would not walk again by myself. Although my parents would be out-of-town that day, my sisters committed to the walk.

So, taking my momentum of excitement to the gym, I decide I can walk the two miles better in a straight line than 16 times in a circle around the indoor track. I go for a treadmill. My thoughts betrayed me.

I was doing just fine. I actually have no idea what went wrong. I am a symmetric person (the accountant in me to balance like an equation), and when I exercise it is no different. I warm up for five minutes then do a faster walk for ten or twenty minutes then cool down for five minutes. I was walking slower than an average person’s stride for the first five minutes, clutching the handle with both hands. I barely notch up the speed to get my legs moving and I don’t even think it was but a few minutes later that I just came down.

It was slow motion: my nose planted in the middle of the handle bar and I try to pick myself up and regain balance but then my feet just buckle from underneath me and down I go…hitting my mouth on the way while belly flopping on the moving tack. I very ungracefully glide off and somehow landed on the floor sitting up cross-legged. I had lost my glasses on the way down so I can’t see and hold my nose and say, “Ow. That hurt.” Then I realize I am bleeding from my nose and considering my fall plus blood thinner pills–well, the equation was very messy and did not balance.

Within seconds I had at least from what I remember, four people at my side. One gave me towels for my nose, another had my glasses and two finally helped me to my feet when I was ready. The lady there helped me to the bathroom to wash my hands and arms and then when I was a bit clean (still bloody nose), I sat out at the tables and they did paperwork. They were very concerned and helped me call my sister (we woke her up) and she came to pick me up.

The rest of the day goes from there…while I sit on the couch with ice on my already blackish-blue nose, Marcia is making all the necessary phone calls in order to figure out what to do next. My doctors at Children’s wanted a CAT scan of the nose and neck to ensure nothing was broken but most importantly the bleeding factor, even though I was not showing any signs of something drastic. We ended up leaving twenty minutes later for the ER and spent the next few hours there. Thankfully, my nose is not broken and nothing wrong otherwise but a low INR count.

The point of my story is not necessarily my poor decision to decide to walk on a treadmill with weak legs and ankles (and not attaching the safety stop clip to myself either), but that I would have not made it through the day without the kindness and help from those around me or those on the other end of the phone with my sister. Even if I did not have NF2, I still believe that after a tumble like that, I would have required a helping hand.

This is why I am excited to be part of the NF Walk on Sunday–because I can be a helping hand in bringing hope to others just as others have done for me.

We can’t do everything, but can we do anything more valuable than invest ourselves in another? Elisabeth Elliot

For more information:

My team, “We walk with Mel!”:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1044487&supId=373310036

NF Walk in Cincinnati: http://ctf.kintera.org/faf/home/default.asp?ievent=1044487&lis=1&kntae1044487=AC40628269E94A3193B4E32ACD2CA733

The Children’s Tumor Foundation: http://www.ctf.org/

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Filed under Adjusting to NF2, Family Times, Hospital Trips, Muffy, Random

Nature’s Night Lights

Random fact #0613: Mel sleeps with a nightlight. Two actually. One in my main room off on the side left wall and another in the bathroom which I can see from my bed. I am not afraid of the dark–I just don’t like the dark due to bad balance. My night lights serve as a safety purpose, without them, I fall.

I will leave you to imagine how I look when I walk in the dark. Darkness is the reason why I do not especially care for winter months. In the summer, I can still be outside around 9pm and be fine. When it finally gets dark, it is best that I have assistance…usually an arm from a person walking beside me or if I go out on the back patio to feed Muffy his bed-time snack, I initially hold on to the rail by the door to balance then take it slow to a chair (plus the patio lights are on and I stay in the lighted area).

I find it is easiest to wait for Muffy to finish eating by just sitting. Thus, I sat last night with no thoughts–just staring into the darkness ahead of me. Then it happened…Fireflies!!! I have been waiting for this moment since the start of Spring! In my mind, it is now the official start of Summer!!

I remember fireflies when we lived in Toledo until I was six. After the move to Colorado, our days of seeing fireflies were limited to when we took family vacations back out east to visit family and friends. Once when visiting friends near Chicago, we were taking a walk and fireflies came out. All of a sudden, gleeful cries and the pursuit of catching them took place…never mind the fact that we were teenagers. I still find it fun to catch fireflies and last night in my excitement, I banged on the window and yelled, “I just saw a firefly!!” I even held up my arms like a victory field goal, which probably looked and sounded more like George Bailey wishing Mr. Potter a “Merry Christmas” in It’s a Wonderful Life.

Although Colorado does not have fireflies, I don’t think that it ever bugged me. (Bugged: haha, Mel humor!!) I know this because God provided a different form of fireflies: nature’s fireflies. Best part was that I did not have to wait for certain seasons to see them. From our backyard, in complete darkness, the vastness of the evening sky and the twinkling of unfathomable numbers of stars was far greater than trying to catch fireflies.

A few months ago at dinner, I told my mom that I was having a hard time reading Holley Gerth’s blog posts, because all this talk about having God-sized dreams left me feeling like I was sitting in a closet with the lights turned off. “I don’t have any God-sized dreams,” I said. Truth…I still don’t–at least I do not recognize them at the time. Not only my Mom, but countless others have kindly reminded me that I don’t have to do big things to be used by God. Even the tiniest star in the sky is still visible, just because it shines–and it shines even brighter when surrounded by others doing the same.

“Shine like stars across the land.” Philippians 2:15b (The Voice)

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Hearing All into One Ear

You have most likely heard the expression, “In one ear, out the other.” It may not be official living proof, but soon I will get to say that literally speaking (not figurative)…with a more emphasis, “In one ear, transfer to another.” 🙂

Last Friday I went to get my right hearing aid adjusted. Because it is now my only ear I hear from, I needed a bit higher frequency for normal routine living. We did not go overboard on volume, but enough to where I hear voices better, including my own. The minute I started talking in a normal tone of voice was when we knew the volume was just right.

There was also exciting news! Instead of a cochlear implant on the left side, I am now anticipating the arrival of my new Phonak Cros. Phonak is the brand name of my hearing aids as well as other products such as the Cros. The Phonak Cros is a device that looks similar to a hearing aid, but smaller and has a completely different function. cros_bte_single

hearingadvisor.co.uk

This is the Phonak Cros. However, I opted for a light mocha brown instead of blue. It is relatively smaller in size than my hearing aid. There won’t be any need for an ear mold as what you see here goes in my ear. How does it work? Well, since I have no hearing on the left side, I miss cues–mostly dealing with people talking or someone approaching me. The Cros has nothing in part on my left hearing. I will still hear nothing out of this ear even though I wear the device. What happens is that the microphone picks up on the sound (like someone saying “Hello”) and will transfer the noise to my right hearing aid.

If this does not make sense, just know that my right ear will have double time work! It will take time to get accustomed to the direction in which the sound comes; however, I am excited! I am excited to see how it works at the dinner table, in my shopping trips, listening to music in my car, Muffy meowing…it will be interesting!

When you depend on technology for physical needs, it can get frustrating. It is never a surprise to me anymore when in the middle of an important conversation, my hearing aid battery just dies leaving me to transition to full lip-reading. But for all the times of tears, hearing aid appointments, and cost of batteries (I might add), there are blessings. Not only will this new arrangement (in time) help me maintain a bit of social grace, but also the Cros will be linked to my right hearing aid, as was my left hearing aid before, so where I can switch the settings and volume with my left hand as it is my stronger hand.

God is my stronger hand. As I learn to depend on Him daily, I see there is still so much to learn. “Call to me and I will answer you, and will tell you great and hidden things that you have not known,” Jeremiah 33:3. Like the Phonak Cros, God links together the my disabilities with His abilities and carries them all in His hand. It does not stop my life from tears, doctor appointments, and the cost of following God into the unknown but when I do, there are blessings.

I am still learning this dependency–

…It’s amazing
How I forget
Can’t live my life
For lack of it
But the Light of day
I’ve always known
It’s in my heart
I’m not alone

Speak to me
Tell me all the things I need to know
I want to hear You now
Can You speak to me
I’ve opened up Your Word to free me
I want to hear You now

Make Your wisdom clear
The words I hold so dear
Bring the light into my dark
I hide them inside my heart…

*Audio Adrenaline. “Speak to Me.” Lift. 2001.

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Filed under Adjusting to NF2, Muffy

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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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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Filed under Adjusting to NF2, Muffy, Uncategorized

Unorchestrated.

[Adj: Not orchestrated; unarranged or off the cuff]

I would venture to say that if I wrote this blog a few weeks ago then it would have had an entirely different perspective. I would have quoted to you lines from the Grinch: “Oh the noise, noise, noise, noise, noise. There’s one thing I hate, all the noise, noise, noise, noise!” Or my favorite Finding Nemo: “Mine. Mine. Mine. Mine.” The seagulls only ever quote one word the entire movie; must not have been difficult to learn their lines. Nigel, the pelican, is about to gulp down his breakfast. Annoyed at the seagulls, he turns and states in blunt authority: “Would you just shut up?”

When my hearing first started the extra editions of obnoxious noises and rhythmic patterns in my head, I had to force myself to find humor to keep myself from tears in most conversations. These two quotes above are most often what I thought. It was and is probably not very obvious to anyone (except to my family) that I am struggling to hear, most often past the extra noise. I put my emotions in the incognito, like the Penguins of Madagascar’s secret tunnel digging at the zoo: and I feel I hide the emotions well, until I can no longer conceal it.

Just%2520smile%2520and%2520wave%2520boys

Communication. Hearing. Deafness. My thoughts seem to be consumed most often about these words, their meaning in my life and how to handle them. I first started hearing a high-pitched ring in my ears in the eighth grade. I grew to ignore it; it really did not distract me or play any significance to my communication even when wearing hearing aids. I don’t think I ever really thought much about the ringing, unless it was louder than usual–in event I had a headache or something. Fast forward ten years and things started to change soon after we returned from our spring break vacation. I noticed two different rings. They both had different pitches and instead of just a constant steady ring, they made patterns almost like a broken record. This is where my first annoyance started. And I thought of the Grinch. I thought of Nigel.

NF2 is a disease where you often feel complete isolation in dealing with the different side effects caused by the tumors; but what I should know or realize by now is that I am not alone. Maybe there are a few extremes, like my sweet-smelling aroma–which I still smell!!! But the ringing in the ears, also called tinnitus, is common among other people with NF2. However, before I knew this, I finally had the courage to ask my friend–who also has NF2–if she had ringing in her ears. In our discussion about the different noises we hear, we both described them in terms of musical instruments or notes–which I thought was fun. And then I realized it is yet another area in my journey with NF2 where suddenly I am no longer isolated…after all these years of thinking that I was the only one who heard excess noise in my head! Suddenly, my perspective started to diverge.

There is no “on” or “off” button; I will live with these noises my whole life. I walked in the kitchen last week and declared, “I am nearing Deafness; yet I will never sit in silence.” As many days as there are of complete frustration in trying to communicate, even just with my family, there are other days like today where I hear the noise but it is tolerable. Maybe it is because last night I sat out on the patio and waited for Muffy to finish his midnight snack. I thought to myself about all the noises and patterns in my head, simultaneously playing their rhythms. It sounds like a 5th grade band; it sounds unorchestrated.

Then I laughed at the thought: “I wonder if any of the famous composers ever felt this way?” Hearing all the noises of the orchestra in their heads while compiling their notes together to become one masterpiece. How did they do it? I thought of Beethoven. His deafness never stopped him from becoming a world-famous composer. I can’t destroy pianos like he did, but in waking up this morning, I realized that the piano is one sound and melody in my head that I hear. The tinnitus is changing; last week it was the sounds of trumpets, electric guitars, an accordion, and clarinets (which were most annoying–sounded like someone was just blowing air in the horn and wiggling their fingers back and forth between two notes.) This week, I still hear the clarinets (though not as loud) and the accordian…but today I hear a regular piano. It has been like listening to a “rest and relax” cd you find at stores even though it sounds more like a child just sitting down and playing random keys up and down the piano. But it is a piano. It is almost refreshing.

Who knows–maybe tomorrow it will not be so refreshing; maybe I will hear something new or maybe not. These past few weeks have taught me about embracing change once again. So today I concluded that even though this may not be the “music” I am accustomed to hearing, it is music and I can praise God for the noise–even the clarinets.

Praise Him with the blast of trumpets high into the heavens,
and praise Him with harps and lyres
and the rhythm of the tambourines skillfully played by those who love and fear the Eternal.
Praise Him with singing and dancing;
praise Him with flutes and strings of all kinds!

Praise Him with crashing cymbals,
loud clashing cymbals!
No one should be left out;
Let every man and every beast—
every creature that has the breath of the Lord—praise the Eternal!
Praise the Eternal!

Psalm 150:3-6 (The Voice Translation)

References:

Dr. Suess. How the Grinch Stole Christmas. Random House, 1957.

Finding Nemo. Disney Pixar. 2003.

*Image taken from http://www.religiousforums.com/forum/attachments/religious-debates/981d1171060978-great-news-hope-our-future-just-20smile-20and-20wave-20boys.jpg.

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Filed under Adjusting to NF2, Books and Movies, Family Times, Funny Stories, Muffy, Random, Uncategorized