In the first grade, I remember learning of our five senses. One of the best memories was a game we played with a partner, in which we learned about our sense of taste by learning about the different areas of taste-buds on the tongue. As we took turns being blindfolded, our partner chose food items to place by a spoon on the different areas of the tongue; being blindfolded, you had to guess the food item. I don’t remember what my partner told me not to give her, but in my first-grader mind, I guess I thought it would be funny to do it anyway. Obviously, great minds don’t think alike in this matter and I paid for it with a heaping scoop of dry instant coffee on my next turn. Makes sense now that I think of it–I cannot drink straight black coffee. 🙂 (haha)
Our five senses: sight, hearing, touch, taste and smell.
By reading my posts, it is rather obvious that this disease affects the five senses. Most often, I write about my senses of sight, touch or hearing, because on the scale of daily activity, these are the largest portion of frustration and concern for future needs of dependency. The other two senses of smell and taste are also effected, but not anything too immense as of yet in my view. I can still taste food…though some is extremely bland when it probably is not and others extremely spicy when it probably is not. As my tongue, gums, throat, and neck continue to numb, I do have to eat with caution–chewing more carefully and making sure to watch for the hot temperature foods, but still taste.
My sense of smell is an entirely different story. My freshman year of high school, I underwent a six weeks of intense radiation…the tumor growing on the 5th nerve in the brain was one of the ones targeted, among others in the brain and neck. NF2 is already a rare disease, then add my doctor listing all the possible side-effects from most common to rarely seen ones–the last few were pretty strange. One was the way radiation could affect your sense of smell. “It’s very uncommon in most patients,” I was told. I may have put a slight startle in that comment, as the only real side-affect I endured (besides hair loss and fatigue) was indeed an overly dramatic sense of smell. Because Children’s Hospital was Downtown at the time, Mom and I would have to drive Colfax Ave. from there to Aurora where radiation took place. Colfax made me sick. We tried to avoid getting behind semi trucks for that reason.
Fast forward eight years and I am still in Denver…having just graduated from CCU, a trip to Greece, a steady job and still hanging out with Street Church, life was so great! Then the tumor on the 5th nerve started growing fast. And we discovered all my radiation from freshman year was unwinding and causing problems, and I would restart chemo. Life was still great, I just entered a new stage…one that led to where I am now. And the first of my five senses to depart was smell.
When we moved here, my smell was already gone although I could get “wisps” of scent every-so-often. No more. No more flowers, soaps or lotions, dinners, deserts or the “eat fresh” vibe of Subway; no more gas station smell as you fill the tank or anything burnt. Nothing. Really, it doesn’t ever cross my mind in a day unless I think o a fire. A fire would involve all my senses–in which I lack the alarm in every area, so I leave my worry on that subject to God’s protection. The only other time I think often of smell is when I can. Yes, I just wrote that I have no smell, but here the past week, I smell.
This has only happened once before–over a year ago–in which I wrote an entry about smelling a sweet aroma. As quick as it came, it vanished. I completely forgot about this sensation until it reappeared. I still can’t describe the smell…even saying “the smell after the rain,” is not quite, but the best I can think of at the moment. All I know is that no one else can smell this and it has been designed for me. I believe even the timing is a God-thing.
This past week or so has had many experiences to make this a memorable holiday season…some joyous and other not. “Remember the good times,” Dad tells me with a hug after my intestines ruined the Christmas shopping fun. And I am trying. Yet I still climb in bed and often completely lose myself in desperation before God. He quietly reminded me again that I just need to be still, the battle is not mine. He goes before me, and as hard as it is to endure this physical state, it is the sweet assurance that my battle has already been won. I can live victorious.
’Tis so sweet to trust in Jesus,
Just to take Him at His Word;
Just to rest upon His promise,
And to know, “Thus saith the Lord!”
Jesus, Jesus, how I trust Him!
How I’ve proved Him o’er and o’er;
Jesus, Jesus, precious Jesus!
Oh, for grace to trust Him more.
I’m so glad I learned to trust Thee,
Precious Jesus, Savior, Friend;
And I know that Thou art with me,
Wilt be with me to the end.
~Louisa M.R. Stead