Category Archives: Adjusting to NF2

Novelties not Written

Much like my right eye,  I depend greatly on my right hand–because I am a natural right-handed person. It wasn’t until this February that the numbness started to rapidly increase, causing my fingers to curl inward like the left hand. There were several factors in my decision to stop driving at the end of March, and the right hand was one of them. Weakness has been a problem more in the left hand, but now, I often feel that even though my left hand is the weaker hand, the grip is better than the right just because the numbness is not as heavy. It gets confusing. Another mind game.

Compared to the rest of the present happenings of the body, I don’t talk much to anyone about my hands past the typical comments that they’re cold or my bad (really declined) penmanship, finger-poking computer times or asking for help opening things. Others are just obvious and a bit embarrassing, especially when it comes to eating…sometime even just around my family. I’ll comment how I miss taking a notebook and pen outside and just write,, but I don’t say much how I often miss just pampering myself…putting my hair in a ponytail or up fancy with cute bobby-pins, adding a little make-up and wear my Promise ring. I don’t like to comment how much I feel like a kid when I can’t buckle my seatbelt or punch my PIN number at the store; how frustrating it is not to be able to hold my books or almost drop my shower head while rinsing my hair or how long it takes to get dressed some mornings or hardly being able to set my alarm or punch the buttons on the microwave. And now that we are incorporating more sign language in the family, my hands struggle…the signs barely visible, if any at all.

Things, things, things…everyday. I usually just adapt–because I have to–and just don’t say these things. I think I let it build this past week, silently, after all the PT/OT and other personals gave me the “strength tests”: Squeeze my fingers, don’t let me push your arms down, and such. My doctors at Children’s do the same, but they always end withe the same question: “Can you still hold a paintbrush?” As if nothing else I wish I could still do is essentially important, because they know my paintings…they know my story and how painting brings me joy as I share it with others. I may have the penmanship of a seven year old and finger-poke in typing, but I can hold a paintbrush. There is almost a sense of freedom and I forget my woes of hands, if only for a moment. My stubborn and numb and curly and weak hand.

Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.

Isaiah 41:10

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The Stair

The stair. It’s staring back at me. Like it knows, the first step is the hardest and so it stares at me…waiting.

Even before finishing the typical first session questions and personal history analysis, I had already claimed my ultimate goal for this series of Physical therapy. In a word: stairs. Even before my major eye corrections, and no glasses since July, the tendency to be nervous around stairs started earlier in the spring when my balance began to again decline. By summer, I was no longer trekking the stairs alone and even getting myself down one and a half steps outside the back patio door–grasping the side handle–seemed dangerous enough for me to stop doing that altogether as well. Without help, I am not able to meander outside or get to the basement. My life is the first floor.

My PT thought this was a good goal–but I also need to rebuild strength in the other everyday movements as well…even simple exercises of properly standing from my chair was enough to leave me heaving in large breaths. I am still needing to be mindful of my posture. After the workout and instructions on which exercises I am to daily repeat until she returns next week, she asked if I wanted to try the basement stairs.

When she had first arrived in the morning, I was seated at the dining room table organizing my new “care kit” container for the inside of my walker; a little compartment to hold a few items I use often, such as, safety scissors, a notepad and pen, my phone and ChapStick and a few snacks. Marcia recommended the idea to me after my OT session, partly because she saw my sincere struggle to open a zip-lock bag to retrieve my muffin the day before. I could have stood from the table and retrieved a pair of scissors from the other side of the kitchen, but I decided to do it the hard way.

Off to the side of my “care kit,” I was finishing my morning coffee in my thermos, all decor in the Denver Broncos logo. As PT first began, we talked about getting my stitches out and how my leg felt overall and I brought up the stairs again, as I also pointed out my thermos with a bit of anticipation: “It doesn’t matter to my family, but the NFL season has started and I have not even been able to watch any games. I mean, I even missed the opening Broncos versus Colts game!” My hands flying in the air as I make my point–entertainment is downstairs. It isn’t just football, but painting as well. So when she finally asked if I was ready to try, my achy body re-surged and I gave a few victory pumps of the arms in the air and said, “Yep!”

We locked my walker by the stairs and I sat on the seat watching as my PT showed me a new way to try going down the stairs, instead of the typical–hold he rail with right hand and brace myself with the wall on the left.  I am one, whether going to sit, stand, or stairs, to grip with both hands. It makes me feel more secure, because often I don’t feel how I am griping the handles or rails. Often, I recheck the position of my curled fingers to make sure my grasp is as accurate as possible. Because the basement stairs only has the one rail, she wanted me to try going sideways, holding the railing with both hands. I position myself and she is right there with me. I move my foot closer to the edge and gaze down. It’s just one step and it is staring at me. In that moment, I begin to shake and tears come. She helped me sit back down and when I was ready, we did the stairs in the garage.

I am not sure why it is just the basement stairs…why I almost fear them. My PT said we’ll continue working on ideas and building my confidence to take that first step, because once I do, there is no turning back.

Cause I’m not who I was
When I took my first step
And I’m clinging to the promise
You’re not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to

~Ginny Owens, “If You Want Me To”

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Making Progress

“Can I have a cup of cold water, please?” I am standing at the table clutching my walker handles, yet just about to transfer to the chair. Marcia is heating the pizza left-overs in the microwave and turns towards me. Said very matter-in-fact, “Why don’t you get it yourself?” I stand speechless as my brain processes the statement; then I come back to reality: YES! I can get my own cup of water. So I did.

They say you form a new habit in twenty-one days. I beg to differ a new  number, based off these latest life events, and give it less than fourteen. Of course, the need and dependency on others for even a cup of cold water played the lead role in this habit, but still, a habit formed and now is in process of returning to the more “normal” Mel–just as the rest of the body after sitting for two weeks. It’s a mind and body game of recovery.

Monday, after my first session of Physical Therapy, a motto was formulated: “Making progress!” There have been times of major moments and minor detailed ones. I got my stitches out on Tuesday, had Occupational Therapy and another PT session today. I can get myself out of chairs and bed without assistance, bonus being able to just roll over in my sleep now that the brace is gone. I can dress myself, somewhat make my bed (it used to look better), get my food from the pantry or utensils from the cupboard and wheel them on my walker to the table. I can get a cup of cold water.

But it is still only the start of regaining strength. After today’s session of repetition PT exercises, I felt the muscles ache and wanted just to sit again. But where would that lead in making progress? If I ran (not literally) from every obstacle in life, where is the endurance? The hope in suffering–my weakness is His strength.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

2 Corinthians 12:9-11

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Infested

It all started Tuesday night a month ago, when I bumped my leg getting out of the shower, in which caused a deep gash on my left shin. A little background information might help explain the situation: It wasn’t my first time hitting my leg on the bathtub sides. In fact, both shins were already portraying an array of nicely blended shades of black and blue that had already been there for some time, due to the longer healing process in taking blood thinner pills. Add the delicacy of the skin, due to long-term use of steroids and complete numbness in the left leg, often I don’t know where most of my bruises come from–except the ones on the front shins.

I often think that I am un-observant. Or maybe things get so routine that it just doesn’t phase the mind that something is different. Such is the case on that day when I was exiting the bathtub. My bathtub already has higher-than-normal siding, not making it as an excuse, but my legs just can’t quite ever make it over the hurdles of a bathtub without contact, unless I am making a “leap in the air” look…which I am sure looks different in my mind than real life. I never ran track. Or hurdles.

My leg that day hit the rim, but I didn’t notice…actually, because it hit the heaviest portion of the bruises, I can’t even remember feeling it. It wasn’t until I noted scarlet red all over my new bathmat that I realized I had been wounded. Good thing I hadn’t ventured off the bathmat yet. I couldn’t reach the ever-present band-aid supply in my counter drawers by the sink, so I made myself presentable for assistance and then pushed my Lifeline button.

After several boxes of large band aids and keeping the wound as cleaned and protected as possible, it still was not healing properly. When I went to Children’s last week, doctors looked at the wound and my ankle as a redness and swelling of the skin under the actual gash had started. We set an appointment to see the Wound Team on September 9th, went to Cleveland for the weekend and started the new week. Then came Tuesday evening.

It hadn’t been until Tuesday that the redness and lower swelled ankle really started to hurt. That evening as Dad was helping me, he was carefully wiping the area with a warm washcloth before applying the new band-aid on the actual wound; it felt like pins and needles!! The next day was no better and by Thursday morning, Mom called my Nurse Practitioner at Children’s. I was just ending my early morning Skype chat with my friend when Mom comes in with a note saying that Children’s wanted me to their ER as soon as we could get there–more along the hopefulness that we could figure out the leg problem and still get me to my CEI appointment by 2:30. Like a two-in-one day. It’s not possible.

Already being set to go for the day, I just quickly put on my shoes, grab the rest of my half-eaten apple and a Fiber One streusel bar while Mom fills my Tervis with my morning coffee. Off we go. At the ER, we get into a room…do some waiting, watch an episode of Bonanza, talk with a few different doctors, more waiting and I fall asleep in my chair. Mom had already called CEI and explained the situation, and they kindly rescheduled my appointment to the following day (yesterday.)

It is in these situations that you learn patience; after much waiting, I got the ultrasound done one my left leg to ensure there was no blood clot problems. The good news is that there is no blood clot problems! 🙂 What the results show is that it is Cellulitis. It’s a skin infection. Germs, even the tiniest, enter through the wound and start to spread as an infection: infested…seems so gross. It’s not like I wasn’t keeping my hygiene or things like this, it just happened. But getting the proper antibiotics now will, in hopes, keep it from continuing to spread. It can get into the blood stream or the bones and that is something not wanted or needed at the moment!

Please pray this infection heals enough by next week, as timing of the eye surgery is mostly dependent on this…

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Privacy, Patience, Public Restrooms

Don’t worry, this post is still G-rated, but the more I thought about how to go about this, the more I wanted to give you a better understanding of what a day in the life of Mel can present. Not that I am special; I just require a new format of special needs in certain areas of daily life.

I’ve talked about things before, especially during last Fall’s sessions of Occupational Therapy. A few: I have fancy big pens I use for “writing,” special handles on my silverware, plastic tableware to eat from rather than heavy plates and bowls, reusable straws to help when I drink, a shower chair and Dad attached a new, secure handle for me when I get in and out of the shower.

Out of all the additions, there is one–probably most significant–that I neglected in thankfulness and took for granted. Until I could not physically function on my own. Truly, if it were not this past weekend’s experience, I would still be living in the same denial of this helping hand: raised handles on my toilet seat.

It’s like anywhere else I sit–the couch, kitchen table or ca seat, I cannot physically stand without the use of my upper body and arms pushing against something. My legs and ankles are on the down-slide, but the fact I still get out of bed on my own each day is a miracle in itself.

So this past weekend, I find myself in a predicament: the toilet is too low to the floor and is next to the bathtub, unlike most others where it is near a wall or the sink/counter. The tub is about the same height at the toilet…too low to push from and my walker handles are too high. I am stuck. Humiliating and humbling, every time that I used the restroom, either my Mom or sister had to help me stand.

You know, I’ve been to Greece. At Phillipi, most of the ruins were still in good form: doors, stairs and walls of the First-century era. The main city entry and stone are original, making it slippery. We saw the amphitheater, the gladiator entries, and the hole in the ground that they termed as a prison. And we saw the public restrooms–

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We’ve come a long way from this picture–much to be thankful for in privacy and patience. But this is what my life with NF2 is becoming: a special need that could one day require more assistance apart from my family’s helping hands. For now, there are no words I can express to my family for their sacrifices in those needs; and there are no words I can express to God for providing in those needs. It is learning humbleness, that I see the Love of God shine in others…and it’s contagious.

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In a few words…

Normally, I like to give my MRI results in a full detailed account. However,in thinking of last week, the past few weeks, the past few months of complexity–I just want to tell you simple. In a few words…

My parents told me the results before my eye appointment, because I would be seeing my neuro-ophthalmologist and would need to discuss my questions and tell of my changes in the right eye vision. I suppose too, my parents wanted to tell me themselves and not have it come to me as a shock or surprise. It didn’t. “I saw this coming,” I told them. And even though it didn’t make it any easier, the fact that I knew in gut-feeling that my scans would reveal something, somehow made it easier to comprehend.

“There’s good news and bad news,” Dad begins. The good news: MRI of the spine showed stable. That is good news; although I have had more weakness in my legs, I probably would have been shocked if there was growth, because the lower half of my body (besides intense bruising on the legs from bumping into things) has not been a problem.

The bad news is that most of the tumors (besides the ones on the acoustic nerves, which wouldn’t matter to me since I am deaf already anyway) have grown…some significantly, some in areas by the skull that are likely causing pressure and the effects seen in my curling right hand, weaker left hand and numbness in the face/neck area adding to the choking, chewing and voice changes too.

These changes are slower, more “normal” to me to adapt to in everyday as compared to the right eye vision. The scans showed that there is a tumor growing next to the right optic nerve. “I am trying to see God’s goodness in all this,” I type to my best friend. At the time, I didn’t see it, but now I catch a glimpse…the fact that the tumor is next to the nerve and not on the nerve, is goodness.

This is what has been causing the grey veil and blind spots in the right eye. I don’t know much about eyes–I truly regret not taking Anatomy in high school or college, but there’s nothing I can do about that now; so I learn from my physical woes. I was told that your optic nerve is protected by a sheath, in which my right sheath is very swollen (thus pressure on the nerve.) I meet a surgeon on Thursday to discuss the surgery to release that pressure in hopes it helps the vision.

That is my last and only option. For the remaining tumors, I have no treatment options. “Your tumors will continue to grow,” my doctor tells me. We have had the discussion several times and I know that he and the rest of the team of my physicians feel helpless in the situation. He expresses his concerns on my current physical state and then asks, “What can we do to help, for you and your family?” Minutes before, I had just been in a state of tears and floods of emotions. Without a moment’s hesitation, I reply, “Well, you can start by getting me a limo and a personal chauffeur. That would help my Mom.” It made for good laughs; it released pressure.

I have not been abandoned though–I do have one more option: “Do you trust Me?” As I sat at the kitchen table that night with my parents, I started asking my questions as if I had already gone blind. My biggest was communication: I’m already deaf and couldn’t learn braille with my hands being so numb–was what I reasoned. How will we do this? Dad gets up and comes to my chair, gives me a bug hug and says, “Like this.”

It’s the picture of trust…”Do you trust Me?” Because in good news or bad news, God holds me.

Hold me Jesus ’cause I’m shaking like a leaf

You have been King of my glory

Won’t You  be my Prince of Peace

~Rich Mullins

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The Blob

Yesterday had me feeling like a blob. There’s nothing worse than feeling like a blob–I had entered the room with great defense, but left like a weak and helpless one. Being a blob in your mind will have you wallow in this way. I put my brain on mental stand-by as we made our way to the car and dozed while Mom and Dad made their way in construction and traffic to the nearest Cracker Barrel.

Comfort food, I started to regain composure. I can’t say it was back to Mel, but I was trying, although I just wanted to be home. That was comfort. At home I make tea and start a new book on the library app that I have downloaded on my Nook. A black background and white words. It’s like a photo negative effect and I read the text so clearly.

It reflected my day completely. My inner blob was my defense. Turn the room of people around like viewing from a negative in the light: and see the defense signs from the bleachers, from loved ones in the crowd; those around cheering me on, those around working ideas to keep me going, those around hindering my path that leads to the blob.

The Blob. It’s pain, suffering, confusion, justification, frustration and fear, selfishness and comfort, unfocused purpose. It’s the complete negative (literal meaning) of the Fruit of the Spirit.

The blob in me comes and goes as I embrace the newness of realty: “Man is like a breath; his days are like a passing shadow,” Psalm 144:4. It is not easy lowering your defenses..but it is not a weakness either. In living, I am learning this…

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