My Life with NF2

“You’re not going to let me fall?” “I’m not going to fall, am I?” Each question, each answer the same: “”No, I will not let you fall.” Not fully reassuring my fears, I had but no choice to place full trust in those helping me. Because I fell and it left me, in a moment, in full dependence on others. I fear falling.

I have a history in falling. By the time I was baby walking, I never seemed to grow out of it. My parents tell the stories of our family walks when I was around maybe five years old or so. I would trip on the sidewalk resulting in meeting new people around the block, as we would have to get to the nearest house for paper towels and a possible bandage. My bathroom drawer is stocked with Band Aides; I carry different sizes too in my wallet. Best to be prepared.

I was not, however, at all prepared for what happened last week. After getting home Tuesday evening, I went to bed. I did nothing Wednesday, except struggle to write a quick Facebook post that I was home and talk for a few minutes to a lady friend from town who brought pretty Get-Well flowers. I slept at all other times, even just going to bed by 9PM. I was told rest was good.

Around 5AM or so, I got up to use the restroom. As my right foot reached the line where the carpet meets tile, my natural curve hit the tile and my foot dug in the carpet, stubbing my baby toes and sending me off balance…plus my eye is completely swollen shut, so I am blind on that side. My bathroom has two sets of lights and Mom, in genius thinking, had left the light on that is above the toilet which just so happens to be the first tthing on the right when you walk in the door.

I am a known sleep-walker, but in this case, I know I was awake. Yet even the light didn’t help me see much as I started downwards–first ramming my right ribs on the door frame and then aimed for the toilet bowl. I am glad God created us with elbows and armpits, because those are what saved me from landing face first in the toilet bowl. My armpit caught the side of the seat and the elbow came withing inches of the water.

By this time, I am crying and breathing hard due to my ribs; as I pull my face up, I sit up and see a pool of blood. My left leg had been gashed right above the knee by the metal part of the brake on my walker wheel. I started hyperventilating. Mom was in the bathroom in less than a minute and wasted no time getting an ambulance. In the ER, I get a few CAT scans and x-rays to be certain of no inner damage. After 8 stitches in the wound, I get discharged with my leg in a brace to keep my knee from bending. We got home around 10:30AM. I just went back to bed.

There were some good things the rest of Friday, but by that night I was feeling sick; Saturday, the headaches increased with loss of appetite and I felt sick, Plain sick. As Mom helped me get myself ready to go back to the ER, I just said that too: “I feel sick. Everything is so wrong!” And it is. My body is wrong, because I live in a fallen world.

But the story doesn’t end there. My story doesn’t end there. Because I have been saved and even when I fall, He is right beside me. My friend was over today nd we were discussing things. I told her how it takes looking back in times like this to see the Goodness. My eye was never touched even though my face flew a mere inch from the toilet handle bar. My Lifeline was not connected properly that evening, because the phone line was down and my phone had been pushed away when my walker skidded across the bathroom floor. My own calls for help would have been useless. Yet God had awoken Mom at the timing of it all.

Losing my independence, though temporary, has been humbling. It has given me a chance to sit and rest. Sit and think. Sit and read. Sit and talk to God. I can’t say I will miss being dependent when this stage passes, but I might miss these moments (minus the painstiffy!) But in this experience, I have seen my life–my full need of dependence on God. Without Him, I am nothing.

Take my body and build it up
May it be broken as an offering of love
For I have nothing, I have nothing without You

All my soul needs
Is all Your love to cover me
So all the world will see
That I have nothing
But I love You

*Bebbo Norman. “Nothing Without You.”

Last week, if you recall, was the surgery for the right eye to see if by releasing the pressure of the swollen sheath surrounding the nerve, due to tumor growth, that it might help my fading vision and even the left eye. The morning of, I only had one pre,surgery rule: eat a light breakfast before 8AM. I never start my week of having breakfast with my dad, but there we were eating together before he set off to work, before joining us later.

After my bowl of blueberry Frosted Mini-wheats and a cup of coffee, I think I started to get more nervous about that evening, because I started getting the jitters (so to speak.) Having already accidentally dropped a new roll of toilet paper in clean bowl water, I also broke a mug and dropped a pill that just so happened to land on the tip-toe of my slipper. We laughed at that one!

We get to the hospital on time, but since one appointment before me was cancelled that morning, as soon as I signed in, I was ushered for preparations. After getting prepared, I met my anesthesiologists, and saw the surgeon for a quick moment. I still did not feel prepared enough mentally, but went under anyway. I don’t remember too much at first when they woke me up–and since it was a later surgery, they wanted to observe me overnight. Dad left for home for work the next day and Mom stayed in my room.

That night’s rest was off and on. Between getting vitals checked and a few chats with Mom, I also suffered a severe migraine. I don’t know how long it lasted, but I remember my Mom sitting on one side stroking my hair and my nurse on the other holding my hand. And after being checked in on by an ER doctor who was finishing his rounds (around 5AM), I truly had a greater appreciation and thankfulness for what these professionals do for their patients. It made me see things from the past, growing up, in new light that I had never experienced before…little things…because each hospital visit, there is always something. 🙂

I finally got some good sleep and when Mom woke me, someone had ordered me breakfast. I guess they thought I had a hearty appetite that morning as I was served two slices of French toast, two strips of bacon, juice and a nice size mug of good coffee. I ate maybe a fourth of the toast, a little bacon and all the coffee. Mom had my juice.

I got discharged around noon, rushed to change back to my regular clothes and then we headed to Children’s for my Wound Care appointment, concerning my left leg. Everyone thought it was because of my swollen shut, puffy and pretty purple eye. I was so tired from the surgery and had a headache, by the time I get in my appointment, I am pretty grumpy and basically fall asleep. Mom was everything that day and when I got home, I basically just went to bed. But it was my bed!

Last week was a blur, really, but as the days went passing, my purpleness faded and the eye started to flicker. Sunday it opened fully for the first time, but didn’t want to stay open long. Yesterday it stayed open for longer periods of time, but most often the eyelid likes to stay half shut; it is still weak. I also let the eye get lazy for that last few weeks prior surgery, it will take time to get my brain re-thinking to have the eyes work together. My right eye is blurry, but I do notice colors seem to be a bit more normal, although it is still sensitive to bright lights.

I have been asked if I think surgery worked, if it was successful. I honestly can’t say yet; it takes a possible up to a month for full recovery. I see my surgeon this Thursday for a follow-up appointment. Thank you for you prayers for this surgery: the peace, for my family and for the surgeons and other staff. Your prayers were heard.

I lift my eyes to the hills,

where does my help come from?

My help comes from the Lord,

Maker of Heaven and Earth.

Psalm 121: 1-2

Two months ago, it was just a mere sentence thought. After trying the doubling of eye medication without success it was discussed as a possibility again. After my MRI, it was decided that the time was best to try–I have no other options.

I knew it was coming. Last week, the hopes was to have the surgery on the right eye this weekend, but that didn’t happen. My left leg still healing and switching from Warfarin (blood thinner pills) to the shots for surgery preparations, it still hadn’t really registered that surgery is coming. Until this morning; Or maybe two nights ago, when important questions started entering my mind; questions I didn’t think to ask at appointments.

I had just been to see my local family doctor earlier that afternoon for pre-surgery check-up procedures. At the end, he asked, “Do you have any worries?” I thought for a second and shook my head in a “No” fashion. Like a blank mind. I don’t worry about my body per say, but the outcome..the effects and details surrounding it. And so I am more thoughtful of how life will be after surgery-depending on the results. It is then, in those thoughts, my mind begins to see the worries of the actual physical portion of the situation.

I was talking to my aunt about this as I made my Starbucks refresher drink in the kitchen today. In telling her that I was seeing the negative, she encouraged me to hold to hope. And that is what I am prying until Monday–to see the hope, like the story of life, knowing whatever the outcome that God still has something special written just for me.

My surgery is set for this Monday, the 8th at 6:30pm. I sign in at 4pm. I will spend the night to be monitored; discharge is anticipated for early Tuesday morning and we might still have my Wound Team appointment (for my left leg) that day, since we are down there only a few blocks from Children’s. It’s no wonder the weeks seem to fly by so quickly. 🙂

I thought I would say a few specific prayer requests:

For peace–that I will continue to hold to hope (and being put to sleep is a fear of mine from a previous bad experience.)

For my family as they are in this with me and take care of me.

And for the surgeons/other medical staff..for wisdom and steady hands.

I won’t be on my blog until I return home; however, I may post updates on the Facebook page. 🙂 More to come…

I am not one of those morning people who get up around 6 or 7AM, fully set for the day, and singing jolly tunes (much to anyone else’s delight.) But, I also am not one to habitly sleep in until morning is over either. So I compromise: around 9:30 or so. I have, however, that my sleeping is getting deeper–and longer. And this morning when I woke, I was stiff and getting out of bed was just not something I wanted to do, but since it was almost noon, I was hungry. So I made myself get out of bed.

Dreams are strange, mysterious. Most of the time, I don’t remember them; but lately, I awake with a few memories. This morning as I sleepily made my way to the bathroom to freshen up for the day, I thought of my dream. I don’t remember anything of my dream except that Mom and I were in a discussion about health and the word, “Painsty,” was mentioned a few times in reference to my pain.

As I am brushing my teeth, I decide to change the word just a bit to a better formula that makes sense: Painstiffy. It’s genius. It tells in one word how I feel: pain and stiff…well, the stiffness and numbness and muscle weakness or atrophy, especially in the neck, are the cause of the pain. It’s like a stiff pain…not excruciating pain. It’s hard to explain.

I decided this new form of a word would be how I answer my doctor’s opening question: “How have you been?”

“Well, I have been struggling with painstiffynes.” I assume they would want me to elaborate on the word with examples, so I already know my response: “It makes me grumpy.” Then I would probably laugh. 🙂 But it’s true–this morning I was grumpy and still God found me. Listing everything already going wrong or not working properly…like my hands, this hymn came to mind:

Count your blessings, name them one by one,
Count your blessings, see what God hath done!
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.

“Count Your Blessings.” Words by Johnson Oatman, Jr.

And I found myself literally asking, “How do I count my blessings?” Because I felt overwhelmed, to see past my painstiffyness for a moment and breathe in the reality of blessedness. You see, this past weekend was physically not the greatest, though from the outer sense, a person would never know. However, it was also a very fantastically fun weekend; I think God knew that I needed the balance. Yet as evening approached last night, fatigue and frustration set in my body. I found myself, yet again, using the bathroom and after I washed my hands, I just stood there in front of the mirror. Then started crying.

I’ve been so emotional as of late anyway, but last night, I finally had a chat with God. I said, “I need help.” At least that was my first sentence. It is hard for me to admit that I need help; admitting that to God was a first step in the full dependence and trust He desires me to have, to seek.

It’s a beginning…and I think that is why He wanted me to see past my woes, my paistiffyness and count my blessings. Because it keeps me focused on His Goodness.

It was my sophomore year of college that my hearing rapidly declined in the right ear at the beginning of the Spring semester. I was ordered a hearing test and having been a while since I had one last, I met my new audiologist. He was deaf, had cochlear implants in both ears and wore hearing aids. His assistant ran the tests.

As the “press-the-button-when-you-hear-the-beep” test started, I found myself in tears. A little embarrassed as the audiologist enters, I start to apologize and he kindly interrupts: “There is no pass or fail in this test…” It is the best medical advice I have ever received and I think in part that in coming from him, being deaf and knowing first-hand, made it not seem like a fake sentiment.

I’ve repeated that sentence to myself many times: at my last ever audiology appointment, where I beard nothing in the left ear; when doctors do the strength tests, “Don’t let me squeeze your fingers together” or watch me walk the hall. And the most recent: visual field tests and the letter chart on the wall. I suppose if I grew up playing Nintendo, I would find visual field tests more fun; I find holding the test button just as hard as trying to keep my eye focused on the orange light spotted in the middle of what my eye views.

I know my right eye has decreased since June, but it wasn’t until yesterday when I was reading the shown letter on the mirror on the wall that I realized how much I have been letting it slack. I know the greyness and bind spots are not cause of my slackness, but I am supposed to try to keep my eyes fixed straight ahead as possible and I have not–I am letting my right eye be lazy. Even if I were doing a better job at keeping it straight, my reading has still been effected greatly. My eye used to be near 20/20. Now I can read “E” and “HB”…then I start squinting. It’s not fair really–who puts “DO” together? 😉

My left eye has always been one for frustrations in this test, so no initial shock when I start squinting too after the annual, “HB.” The assistant shows a new slide, where I see an “A.” I think capital “A’s”are pretty distinct. But I am also seeing a large “O” that is heavier outlined on the bottom than by the pointy tip of the “A.” No pass or fail, I remark, “I know this is serious and I shouldn’t be joking around, but this looks like a baby penguin’s face.” Because it did! I had already talked aloud that it was either an “A” or an “O,” so at least they knew I was trying. I was half right,”DOAF.” Good grief. 🙂

The surgeon and his assistant come in and mostly talk to my Mom as I have been going without my glasses (they make me dizzy sick.) I get a few clues from hand motions: they were chatting about my leg, last year’s blood clot and my eye. Later the assistant fills me in: basically, the infection needs to heal, as they don’t want it entering the blood stream and getting to the eye. There is also the fact that I am on blood thinner pills. It was not an issue for the cataract surgery. However, for this right eye surgery, I have to follow the procedures of preparing for the surgery and change from pills back to the shots, until pills again in post-surgery. My doctor will regulate this, as they also don’t want me to get another blood clot.

The surgeon is hoping maybe the end of next week, but there are no certainties. And as I started to immediately try to plan and think of all the details of money and insurance and other family member’s upcoming appointments, Mom just tells me not to worry…I do’t have to worry.

It’s a reminder, like “No pass or fail in this test…” that I must believe.

Over the past few months, I have noticed that when I speak, often it is not heard and ignored (unintentional.) There are other times when I am speaking and a family member will tell me, “I can’t hear you.” There are moments of patience and restating what I just said in hopefully louder voice and then there are the moments of frustration (pure annoyance from the, “I can’t hear you” phrase) in which I snap back, “Then why don’t you try reading my lips!” It’s not like I can hear loud or soft voices…step into my world, is what I am thinking.

My world once had voice; in fact, Mom often tells people that when I would sing as a little girl, I had a voice like an angel. We lived near Toledo until I was six, in during that time, I sang Honeytree songs at church and was Mother Goose in our Kindergarten play. When we moved to Colorado, I focused my stage career on the church plays, as it had both music and acting. I loved the memorization of lines and songs. My last performance was during my fourth grade year. I was the lead role of a tom-girl named, Morph. During my opening song, my voice cracked. I had hoped no one had noticed, but as I gazed out into the audience, I caught Megan’s eye and we both knew in facial expression. I had to look away to keep from laughing…concentration!

I entered junior high with a still changing voice. Not in any bully fashion, but I often got asked in the “You sound weird,” tone why my voice sounded funny. “I don’t know,” I had to say…because I didn’t and often I wanted to tell my family that too when they would state that I needed to relax my voice. Ironic, I could hear the pitches of my flute and piccolo, but not my own voice.

Although it would sometimes eat my self-esteem, it never stopped me from singing or talking. Half in love, I sang my boy-band songs so much at home, I was often told to switch the CD to something different. I only got into trouble in school twice: the first was in the 2nd grade. My “best friend,” Stephanie, and I were talking when we were suppose to be solving our math problem. Mrs. Brumfield wrote our names on the board and we missed recess that day. The next time it was Mrs. Baron’s computer class, in which we just typed (read and copied exercises.) Maybe Mrs.Baron didn’t know boring this could be day after day or the fact that Tasha and I were pretty much inseparable at the time…regardless, we were seated next to each other facing the library windows. Yes, between regular chit-chat and mouthing motions to passing friends out the windows, it didn’t take long for Mrs. Baron to move me across the room to face the wall.

When I reached high school, the aspect of my voice and hearing made sense. I no longer took stage to sing, act or play the flute–but there was just one more acting performance that I took part in, and I didn’t even have to audition. And there was no audience…well, maybe the FedEx deliverer counts? Yes, the height of my career…the big grand finale, our own Hollywood in the making–

I’ll give you three seconds to control your outbursts of laughter…3, 2, 1.

And this is just a picture; the movies are none to compare with, except maybe the real Lord of the Rings trilogy. If you hadn’t noticed, that is me with the home-made (and most itchy) hat and neon looking beard. I was cast as the “talk at the wrong moment,” lover of roasted pork and ale, but tough as a nail in battle–the stubborn Dwarf, Gimli. We filmed all our favorite scenes across our property the entire day. By the end, my voice hurt, because not only did I have to try to talk loud over the wind, but also, I had to change it to a deeper tone. Some sacrifices are worth the finished product. 🙂

The adult world didn’t ask about my funny voice, but expressed concern: “Do you have laryngitis?” they would ask as they pointed to their throat. If I ever got bored at work, I could have just started a mental tally of how many times I got asked during my shift. Why does voice matter so anyway?

I know for my doctor, this was a concern. He noticed my softness right away…things have changed since I saw him in February. I too have noticed the changes in my face, but maybe have not realized how significant they may truly be. As we continued our discussing of numbness in the face and hands, it dawns on me, like everything else effected by the pressed nerves: “Can your vocal cords go numb?” My doctor said it could be a possibility.

And so I have a quiet voice. Sometimes that is a blessings, sometimes I desire to be heard; but if I am living a life full of praise, my actions will speak louder than words.

I think that all of us have a responsibility to sing the songs as though this is our last day on earth. And we have a responsibility to live them out. Because when we sing and live together like this, uniting as one voice, it can literally shake nations.

Martin Smith, lead singer of Delirious?