Monthly Archives: October 2015

Dictated to Mom Wednesday, October 28 and typed October 29

I can’t remember the last time I used an alarm clock! It was definitely the time I was home, even before I started using home health care aides. All I remember is that my alarm clock started to get tricky when light sensitivity began to be a problem. As my vibrating deaf alarm clock would go off under my pillow, my eyes were being “blinded” by my flashing lamp and I’d usually end up smacking my alarm clock endless amounts of times until I could find the snooze button! I pretty much ended using my alarm clock when I started home health care. My aide would come in the morning to wake me up in typical “good morning “ fashion. The first thing was to shake me awake then open the curtains! In typical morning grumpiness, I tried very hard to explain “no sunlight until I have my sunglasses on!” by the time we had a good morning and had the routine down, I entered Children’s Hospital and then I transferred here to the nursing home. Now I don’t use alarm clocks, snooze buttons, nor am I “blinded” by sunlight in the mornings. It does take me a bit to get a good routine down. The mornings are my favorite time of day here, for the most part. They seem to go by quickly and the best part is I control my own breakfast menu!

When I first moved in, learning the way things go as far as eating and the times in which to eat were one of my biggest adjustments. Everything is scheduled here. I could no longer eat whenever I wanted to or what I wanted to because that was all set for me. However, I did get a little break at breakfast. Our family considered pancakes, sausage and the farm-style breakfast to be a dinner. We always had a bowl of cereal in the morning. “All I want is a bowl of cereal and a cup of coffee, that’s breakfast!” I soon got tired of Corn Pops and Rice Krispies. I even talked to the nurse about more fiber. She suggested oatmeal for a few days while Mom got me stocked on a few boxes of fiber cereals. At least that was an easy fix! However, it took me a while to figure out that I was being served decaf coffee, instead of regular coffee in the morning. Once we realized this problem, we quickly fixed it. I now have a large can of Folger’s and an assortment of powdered creamers sitting on my shelf next to my cereals. Just take it from my experience, if you’re ever looking for ways to cut the caffeine in your diet quickly, just try that method—DECAF all the way!!

My favorite part about breakfast here is the juice. They always bring me a cup of juice from the dining hall. It was about this time last year in which I was recovering from eye surgery and many stitches in my knee after a fall. Besides OT and PT, I did nothing but have my feet propped up and read on my Nook. One of my favorite books I read was Treasure Island by Robert Louis Stevenson. After I read the book, I realized that Disney’s Treasure Planet is based off the book. As I re-watched the movie, I found it all spectacular. In the movie, Jim Hawkins is off once again getting in trouble while his mom is overwhelmed at breakfast time in the diner that she runs at the end of the port. All these funky looking creatures are eating as she is trying to talk to a family friend who is a dog and all the ladies in the corner. One every so often waves a cup and yells, “Mrs. Hawkins, my juice!!” It’s a good thing most of my aides are somewhat my age or younger because one morning, I thought of this scene and told the aide, laughingly. She had seen the movie, so I didn’t have to explain anything further to her. I stopped talking and just laughed and finished my juice.

Anything past breakfast can make or break the day. Since lunch and supper times are a bit more set it has taken me awhile to figure out how much I like to eat at those times. It still has taken me awhile to figure out what my stomach and intestines like and what they truly reject! With my body constantly changing, it’s now not just my intestines that are a problem. I’ve had lots of discussions with my dad about my chewing and swallowing. I also discovered last night that I now have a lisp! That’s kind of besides the point of eating, but the fact is I’m having a lot of problems just in how I eat my food and even swallowing my water. One night though, I was really disgusted at dinner and when Dad came in that night, I started lamenting about the foods I was missing because a lot of food typical on the “outside world” can and are considered an expense here.

Since the season is changing and November is coming up, I started talking about my envision of a Thanksgiving dinner that I knew I wasn’t going to have here. “Oh, I know we will get mashed potatoes and gravy as we seem to eat that a lot here”. It wasn’t until the next day that I realized I really have nothing to complain about even if some foods make me sick or I find them gross. Also, I feel like a baby that is being fed and always asking for a drink because I cannot do it on my own. But the thing is I am being fed and fresh water is always available to me when there are millions around, not only in America, but also in the world who have nothing to eat or drink. I’ve never know hunger or thirst. Yes, I’ve been thirsty, but even then I get “filled”!

I’ve noticed in my time here, since going blind, how much more that I am spiritually “hungry”. Now that my eyes are darker, they seem dry, almost like the dryness that I sometimes feel in my soul when I am alone. But just when I need it most, God fills those longings with new songs and a few Bible verses I can think of on my own and I can fellowship with Him. Yesterday, I had two people visit me and read me verses from the book of the Gospel of John. I went to bed last night feeling more satisfied as if I had just eaten a piece of banana cake. That is the reason why I continue to trust God, even like the night before when I was in such intense pain thinking it was my last hours. Maybe that is why mornings are my favorites too because there are some mornings I don’t want to get out of bed. The fact that a new day has just begun is something worth praising God for. Now that I cannot see, I always ask if my shade is open and if it is a sunny day!

John 6:35

Jesus said to them, “I am the bread of life; he who comes to Me will not hunger, and he who believes in Me will never thirst.

Dictated to Mom October 20^th, Typed and posted by Dad October 23, 2015.

Sometimes I feel like I’m living here in the twilight zone. I really have no idea what this place looks like, except for a couple of memories. Because I spent a lot of time in my room when I first moved in, I could tell out the layout of the room. I have places where I like to sit. I know if I go out of my room and take a left there is a family lounge area at the end of the hall. I know if I take a right out of my room that takes me to the lobby area. I use to sit at the table in the lobby with my prayer journal or would look out the big windows . . . past that, I can’t tell you the layout of this place, especially the outside. I started learning the layout piece by piece with people who would take me on outings. They would let me touch the holly bushes or tell me when the sidewalk ended and we would turn around. I was also told there were cows in the field behind my room! There is a fountain outside in front of the building. “A fountain!” I exclaimed excitedly. At that point, the image of the sound of music with Maria and the Von Trapp family singing around the large fountain came to mind. “It is really not that big,” Marcia corrected. “Oh!” I exclaimed, but it was too late as the movie scene had come to mind. As I continued on my thought of the Sound of Music, Rolfe tells Liesl his concern for her because she doesn’t understand the outside world. He says he will take care of her because she is alike a “big baby”. She says she is sixteen, and what’s so “baby” about that?! Of course, the next musical score starts on its way, “I’m eleven years Liesl’s elder and sometimes I want to say my age and say what’s so “baby” about that? But the truth is over the past two and a half weeks; I have started to decline and entered into what I call “baby days”.

About two weekends ago, I had the privilege of finally meeting my friend Jess from England! She also has NF2. I was apart of the book she published of people around the world who have NF2 and their stories with the disease. I first met her on line in 2012 and we chatted back and forth. We both have one thing in common. We both really like Anne of Green Gables. We had kept in contact and had tried to meet before, but it had never worked out. I finally did have a little contact with her at the beginning of the year, so when Dad said “Guess who is coming?” she is not the first person I would have guessed was coming. Jess and I had a great weekend! It truly was one of those times that I really cherish! She had gone to Prince Edward Island before visiting me. She described in writing on my arm all that she saw. I envisioned it in my head. That weekend seems like the “top of the mountain” with Jess and family also visiting me. I was never really alone.

Things suddenly changed, as at the end of that next week I seemed to have fallen off the mountain top cliff into the deepest of dark valleys. Literally, almost all my family and extended family went to my cousin’s wedding in Chattanooga, Tennessee. And guess who didn’t go! I was already a crying mess and throwing my hands up in the air as the aides were getting me dressed on Friday morning. I didn’t feel physically well. I also didn’t see any purpose for me for the weekend. I really did struggle too because my eyes went from seeing lightness to being pitch black in an instant. “It’s the black spinning that makes me feel really sick. I was very grateful that a few friends stopped by as chats helped take my mind off of myself. I still had hours by myself—even my sleep was restless. I tried to sing songs and think of people to pray for, but I couldn’t get past my own physical suffering.

I was really troubled and despaired and I heard a voice in my head telling me that I should just “curse God and die”. As I shouted back, “No! I will not!” I asked God how much more I could give that hasn’t already been “taken” from me. Then a list of “somewhats” came to mind:

• I can “somewhat” chew and swallow my food.
• I can “somewhat” swallow my pills.
• I can “somewhat” take a drink without choking.
• I can “somewhat” move during the transfers.
• I am “somewhat” not confined to a bed yet.
• I can “somewhat” hold a toothbrush.
• I can “somewhat” feel things with my hands.

I started doing better when the family returned from the wedding . . . hearing all of the stories and getting the details of the weekend helped bring some laughs and joy back. I still was struggling inwardly as a lot of my dreams are pointing toward Heaven. My friend came on Friday with peanut butter and jelly sandwiches. It was delicious. As I sat talking with my mouth full, the subject changed to how I was doing. I gave her the typical run down and finished my bite of food. Then I started crying and asked my friend if it was selfish of me to pray for my heavenly healing? I’m still not sure about this question. I know one day I will have a heavenly healing, but is it right for me to plead to God to take me when He still needs me here to help others. Jesus gave everything I continued to say and He trusted Himself to God even though He knows what was ahead. I don’t know what is ahead, but I have truly given Him everything. It may not mean giving Him everything physically, but have I given Him everything in my heart? As my body continues to do down like “a baby’—trust is the one word I’m told all the time. If I have to trust everyone around me for my needs, then I should trust God and His timing.

Since my conversation with my friend, I’ve done a lot more thinking and praying. The songs I sing point toward Heaven, but I do see I have things I need to finish here. I pray that when my final breath has been taken, I will have finished all that God intended me to do.

Isaiah 40: 28-31

Do you not know?

Have you not heard?

The Lord is the everlasting God,

The Creator of the ends of the earth.

He will not grow tired or weary,

And his understanding no one can fathom.

He gives strength to the weary

And increases the power of the weak.

Even youths grow tired and weary,

And young men stumble and fall;

But those who hope in the Lord

Will renew their strength.

They will soar on wings like eagles;

They will run and not grow weary,

They will walk and not be faint.

(Dictated to Mom on September 30th)

Last summer when I participated in the Children’s Tumor Foundation NF2 walk in Cincinnati, OH, I got on the website to register the team name. As I was looking through the other teams, one was named “NF Gets On My Nerves”. Maybe you have to have the disease to find that ironically humorous as I did! I still think it’s funny, but in all reality, my nerves really don’t as since the last blog post, they have taken a lot more pressure from the tumors.

It was just a few days ago that in thinking of this blog post, I really didn’t know what I was going to write. I get tired of telling everyone about my physical woes as if I don’t have anything else to talk about. I know it’s important to share so people are updated and know how to pray for me. My body continues to go down, but sometimes I feel that I’ve already said enough. There are always the physical changes, but over these past few weeks, I’ve experienced a state of mental and spiritual changes in dealing with the new level of nerve functions. At the same time, my body has been battling between the flesh and spirit. One night, as my dad and I were discussing my physical conditions, I found myself getting really frustrated and angry during some of our conversations. As Dad was giving me a hug that night, I suddenly realized that I was doing the same in my prayers and attitude toward God. I don’t think that I’ve ever had such a state of loneliness in my life before to where I was so angry at God I just couldn’t understand why things were happening to me, I’ve never been depressed before, but in some ways the attitude I had could have been so.

A lot of my physical pain now deals with having numbness that has now pretty much taken over all areas of my body. This isn’t really anything new, except for one thing—my breathing. The entanglement of tumors behind my intestine problems is obviously nothing new either as I had this problem for several years now. Over the past few weeks, what has been happening is more tumor pressure in my middle part of my spine. The tumor that is growing on the inside of my spinal cord at the base of my neck is causing pain when I breath. If you look closely, sometimes you can see my head bob because my heart is beating faster. I wonder this is a side effect of the tumor? In all of this, I also am experiencing some general “mishaps” here and there. Once, as I was spilling my capped water mug yet again, I cried out, “What do you want from me? Why am I still here?” I was so frustrated and at such a low that I told Mom that I was “done” and wanted to give up! I’m tired of being “brave” and taking the road less traveled—separated from my friends and family. “It’s not fair”, I cried. I was letting my flesh “win” even though I know I have the victory in Christ!

Often times at night, I wake up between 5:30 and 7:00 a.m. to use the bathroom. When I’m lifted back in bed, I started to fall asleep. Often Audio Adrenaline’s song called This Day comes to mind. The song talks about getting out of bed and starting the day with every breath of God. It’s sad to say that by the time it’s 9 a.m. (and transferring me to my chair)—I have long forgotten the song. I have learned a lot over these past few weeks since the last blog post. Most importantly, I’ve learned how significant every breath of life is—each breath may be full of pain, maybe in a small or big way. I know now that every breath is surely a gift. Some may say it’s a miracle—and maybe it really is. I don’t know, but I do know that as long as I am still breathing that I am here for a reason. That reason sometimes is just to pray to God—I’m still learning this lesson like every brush stroke.  I feel the joy of what that breath of praise can really mean. Sometimes I still want to know “why” but I don’t need to ask that question anymore.

Thank you all for your continued prayers and encouragement because it makes my heart overflow with thankfulness. And a thankful heart is a happy heart!

This Day

Sung by Audio Adrenalin on the album Underdog

It’s six A.M

I’m so tired

The alarm sounds

And the new day begins

Before I go

And disturb this peaceful moment

I look to You

[CHORUS:]

I want to say a prayer

Before my feet can hit the ground

Lord I give this day to You

I’m amazed how You forgive me

Yesterday seems so far behind

It’s a brand new day

And every day’s a new beginning

I look to You

[CHORUS]

Breathe in

Breathe out

Breathe in

And watch the day begin

I wanna watch the day begin

[REPEAT CHORUS]