Tag Archives: finding hope

To Feel Numbness

This past Mother’s Day, we decided to treat Mom with a picnic at the state park just down the road. It was such a lovely day! After the Frito taco style lunch, everyone played some outdoor games…I focused on Frisbee and amazed myself how good I could catch while sitting on my walker. Throwing it back to another person was a different a story. The day had me thinking of years past where we would take family picnics in the mountains. But instead of picnic birds and cute chipmunks joining the feast, we just had bugs. While Melissa’s pup, Basho, tried to eat a caterpillar, I was distracted with a few baby spiders crawling around at the end zone of our picnic table cover.

“They’re in nature and they’re so tiny,” I kept telling myself. Mom and Dad have done a pretty good job of keeping spiders out of view in the house–it has been a while since I have even seen one so close. I think the time helped calm my previous state of hyperventilating in arachnophobia; even watching The Hobbit: The Desolation of Smaug. was more tolerable (of course, Marcia and I were a little distracted too at that part, as we were attempting to get my caption specs to work properly!)

Anyway. back to Mother’s Day, the sun was shining and not yet having my sunglasses on, I was in squint mode trying to keep up with all the lip-reading conversations. Up until this point, lunch had peacefully survived without epidemics of girlish squeals of bugs–but I broke that trend when all of a sudden, I realize that this is no cataract fuzz in my right eye view. It was a spider! And it was no tiny baby one at that either! My first reaction–the glasses got thrust off with my left hand and shoved into Dad’s face (well, more like over his plate that was still full of Frito taco lunch.)

“There’s a spider on my glasses!!” Dad takes my glasses and flings the spider off into the grass. I continue, “Gross! I am infested with spiders!” Still disgusted, it occurs to me, “That could have been crawling on my face!” And Marcia confirms, “Well it was on your arm.” Yeah, thanks for the warning.

I am not certain as to why numbness is a side effect of the tumors. I understand muscle atrophy and weakness, but not the numbness or why/how it also affects the muscle weakness too. I can’t even tell you when the numbness first began…I don’t remember. All I remember is that it started in my left ring finger at the tip. Slowly over time, it progressed to other fingers in the left hand and my toes. A definite turn took place the summer of 2010 when the tumor on the 5th Nerve doubled in size, suddenly leaving me with intense jaw pain. I first thought it was TMJ, as others in my family have the condition, but as soon as I felt the first tingles of numbness I knew it was tumor related and it was confirmed by the MRI results.

Numbness in the face was strange at first–now, it covers everything: forehead, gums, cheeks and neck. As of this past week, I have confirmed numbness in  the upper left lip. Mom says it is not noticeable, but if you studied my face closely, you can see the lip is a bit poofed and that makes the lip slide to the right (just a tad, but still, I see it.) It’snot just my face…my feet (can’t really wiggle my toes anymore), whole left leg and right arm and hands…areas on my shoulders and back too…numb.

It is hard to describe “numb.” One would assume when you’re numb that you don’t feel anything. Almost but not quite. I feel things, depending on what it is. Just examples: I feel the ground when I walk and I feel what I touch with my fingers (minus the right pinky and my grasps are very weak); I can’t feel temperatures in the hands or feet, so it is hard for me to tell if my feet are really cold or if the plate coming out of the microwave is hot. Numbness tingles like when you come indoors after being outside on an extremely cold day–the thawing effect. Numbness is heavy. Numbness is a pain (although too figurative, I am implying the literal definition.)

As I was thinking of numbness this week after confirming it in my upper lip, different situations came to mind. I found myself, in numbness, with a burden for those who hurt deeply (physically, mentally, emotionally, spiritually.) Whatever state, I realized that people in immense pain use “numbness” (or the forms of action in a way to numb the pain), to escape pain (or the hopes of escaping their current suffering.) But you never escape through numbness–because you feel numbness…it is heavy, it is a pain. Numbness (or the denial of the situations/conditions one is living) is not the answer.

“Held” by Natalie Grant

(*Second verse)–This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

 

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

The Art Show

Last week, we–as a family–headed down to Cincinnati for an evening of fun. First stop was a run-around through Ikea (that place is like a corn maze!) with the intent of finding a reading chair for my room. The hunt turned out quite successful as we left with a small recliner-style chair loaded in the back of the suburban. It is a simple, but lovely black chair and it has already been well used! We also went to Jungle Jim’s–the coolest international market around! We all ventured to our favorite places around the world in search of goodies. My focus was the variety of teas: Papaya and Passion Fruit black tea from the Asian section and herbal teas from the England section–Raspberry Cream Caramel and Tangerine Almond.

We then headed out to the Clifton Cultural Arts Center for the art show in which I was a participant, with collaborating artwork and two of my own paintings. Although I barely missed meeting with the three girls that I had been in Skype contact with over the previous months, I did have a chance to meet the two professors–Jenny and Sarah–and one other student from their class. The collaborating watercolor cards (that I started) were not yet complete, so I look forward to seeing the outcome when the girls send them to me in the mail; the painting canvas, however, was finished and on display. Because I had only started the canvases, seeing the outcome didn’t feel like I had any part in the project, though I did. A very strange and new experience, because I still feel as though I make art thinking inside the box…a very traditional view of art I guess. IMG_4913

IMG_4912

IMG_4932 Jenny, me, Sarah

IMG_4916 My own paintings: Clematis in Full Bloom and Fire and Ice

As I ended viewing the art exhibits around the room, I had a chance to talk more with Jenny about the class, art experience and purpose of this particular show. I had noticed a theme: much of the art descriptions discussed around the area of cancer or other life-threatening traumas–the pain, emotions, questions, fears, doubts, hopes and dreams, survival. Jenny mentioned that she had encouraged the students to think deeply of these things and portray them–because we are all affected, whether you are the one facing the trials or it is someone else you know. Art is a medium to express these different side-effects of disease.

One art set was a participant project where cards and pens had been placed on a table. You were invited to write an encouraging letter to an anonymous adult cancer survivor or patient. (Read about full project here: The Mandala Project.) I locked my walker so I could sit at the table and picked up a blank card. At first I didn’t know what to say…I get a lot of encouraging letters, sometimes even from strangers, but here I sat speechless for a few minutes. I finally started just by saying my name and that I didn’t have cancer, but a rare disease with tumors. After my first introduction sentence, thoughts just started to come…

I concluded my note by mentioning strength, because, let’s be honest…whether it’s cancer, NF2 or another disease, any can initially wipe out your strength–physically, mentally and emotionally. I have been there. I still am there. And it is when you cry out in your uttermost weaknesses, that God answers in His fullness of strength…in ways you never anticipated, hoped or dreamed.

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.

Romans 8:26, ESV

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Limitless

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

Ephesians 3:20-21

Yesterday didn’t quite seem like the first day of Winter. Of course I was not going to complain…warmer temperatures, a little humidity and rain was a bit refreshing for me personally, as I could actually walk on my own in the outdoors. I probably am quite alone in this excitement, but I am also truthfully a little sad that for Christmas we may be seeing green grass instead of a blanket of white. Guess it just goes to show that, “The grass is always greener on the other side.” I find the weather pattern here to not follow a pattern, so you never know what we will expect this week for the holiday anyway.

Yesterday’s less-winter-like weather didn’t stop us from enjoying the Nutcracker ballet performance in Dayton. Even though I could not hear the music, I was surprised at how much of the music I remembered and also how good the timing of music in my head was to the dancers onstage! (Ok, just had to have the boasting moment. 🙂 ) It was a memorable performance.

It really didn’t start at the Nutcracker, but the past few days my balance has been the worst yet. I think a main reason for yesterday was due to only being able to get a few hours of sleep the night before, so my body was exhausted. I have also struggled again with my bowels, so that may also play a part…the tumor pressure in the lower spine…the increase numbness in my left foot, resulting in a pained ankle and swelling. There are many things. By the time I am getting ready for bed last night, I have already forgotten about the fun of the day–the time I got to spend with my family, the magical performance of dancers, the chance to be out enjoying life.

I used to be a morning person…before my body got old. Before my body slowed, making any hurried situation a nightmare. I despise being rushed or racing time. I never win. This morning getting ready for church was like this. I could have been on time…if getting down into the garage didn’t mean coming right back up to use the bathroom; if getting outside in the wind didn’t interfere with my balance and the fact that I couldn’t get the side door to lock; if putting my walker in my car didn’t mean causing my finger to bleed or using all my arm strength. I slammed the door as I finished putting the walker in the back seat, balanced myself in the wind and let the tears flow. Everything in me wanted to turn right back around and just stay home.

But I got in the driver’s seat. Something in my mind just told me to press on…and church was amazing. I returned home right after church ended and finished the coffee that was still warm in the coffeepot. With the family still at their church service, I got a chance to have some alone time reading and doing some thinking. I read a newsletter from my friend. Her Christmas thoughts are taken from the experiences in her Denver neighborhood. I know the neighborhood; I had grown to love the kids and families there as I volunteered weekly with my friend’s ministry the five years I lived in Lakewood. The kids still send me get well cards–I cherish them.

My friend’s letter focused on Hope. We miss so much in life, because we see limits-even putting limits on God in all that He is, all He provides, all He promises. But God has no limits. He is limitless. I sat and pondered this. Lately my prayers have been mere few words, my frustrations in body leaving me with doubts for my future and what I will become..how it will affect my family. I have tried to ignore it, but I can’t ignore it for much longer. I can’t plan my future, but I don’t want to be unwise about it either.

Why is it hard to fully trust in the Limitless nature of God? For me, it means letting go of all I imagine or want for myself. And I guess that scares me. But it shouldn’t. Why would a Limitless God desire me to give myself fully to him, if He didn’t have a greater picture in mind? And so I seek that faith…that trust…that Hope.

Michelle Tumes, “Dream.”

Chorus: There’s a dream in your heart and His heart is your prayer
You can move mountains with your life in His hands
He’ll tear down the walls and He’ll walk where you can’t
Have faith in the power to believe
He’s given you the dream

2nd verse: I pray your dream will leap beyond you expectations
You’ll see miracles He has no limitations
Listen to His voice a spark will ignite
Let Him be the strength to carry your life
He’ll raise your spirit high

Faith in the power to believe, He has given you a dream…

 

 

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Filed under Adjusting to NF2, Family Times

Light

Today was refreshing. Encouraging. Restful. (I like naps!) A time of fellowship with a friend. And sunshine.

I am not implying that the sunshine alone turned my attitude in a 180 degree motion, but waking up to its light did lift the mood as I prepared my breakfast and sat down for coffee and morning readings. Last night, I ended the day pretty much in despair. I saw little hope. I felt sick in my stomach/intestines and getting ready for bed was in pain from the pressure in my neck.

Mornings are a better time of day for me; I am a morning person, though I can totally stay up late as well. But I feel energized in the morning and this morning was no different. I still woke to the same problems I fell asleep to last night, except the pain in the neck was gone and not as much pressure on the spine. My stomach issues are just something else anyway, but I did enjoy a light breakfast.

Finishing my coffee, I read the passage in Genesis where Jacob wrestles with God. I always find this passage interesting, because we see Jacob on his way to meet his brother Esau after fleeing from him years before because he stole Esau’s birthright and the blessing from their father Isaac. So now the night before they meet, Jacob is afraid. I read the Matthew Henry Commentary for this particular passage and it was discussing how Jacob stayed behind, alone, to pray…”wrestling” with the Lord.

And Jacob was left alone. And a man wrestled with him until the breaking of the day. When the man saw that he did not prevail against Jacob, he touched his hip socket, and Jacob’s hip was put out of joint as he wrestled with him. Then he said, “Let me go, for the day has broken.” But Jacob said, “I will not let you go unless you bless me.” And he said to him, “What is your name?” And he said, “Jacob.” Then he said, “Your name shall no longer be called Jacob, but Israel, for you have striven with God and with men, and have prevailed.” Genesis 32:24-28

I can’t say that I have ever prayed fervently a whole night about my fears…to be honest, this past week, I don’t even think my prayers got past the phrase, “I can’t do this…” Not even this morning’s prayers were very specific, but knowing that I can wrestle my inner thoughts, emotions and everything before God enables me to be vulnerable. I think of vulnerability like dependency = the sign of weakness. But it can be a source of strength–like my walker…it implies a tone of “handicap”, but it is a source of strength and stability when I walk. And today, I was able to get my walker to my car, in my car and drive to meet my friend for an afternoon coffee/chat. I don’t always need my walker or my cane as this morning, I was walking fine without them, but being independent, still needs dependent. I am finally accepting that my safety, when on my own, needs the stability.

Acceptance is rough. Although today, I found a ray of sunshine…of hope. I can live with these new changes, though I am still figuring out how, it is still difficult and I will still have melt-down days of despair, but today, light prevailed.

We ought to continue instant in prayer, always to pray and not to faint: frequency and importunity in prayer prepare us for mercy.

Wrestling believers may obtain glorious victories, and yet come off with broken bones; for when they are weak then are they strong, weak in themselves, but strong in Christ.

Matthew Henry Commentary. Biblegateway.com

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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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