Dictated to a friend on Monday, June 22, 2015:
I’m finding these past couple weeks I have been struggling with my mornings. More so the past week and a half because in nighttime my sleep has been restless. I am not sure why, but as my vision continues to go I am starting to get more dizzy feeling, even when I lay in bed and it is somewhat dark. I’ve been having weird dreams right about the time that I’m supposed to be getting up, I’ve been talking more in my sleep and there is some evenings where the bed pans never seem to end. I’m finding by the time that I get up in the morning I have been thinking back to when getting ready used to be more than just getting ready. The other morning especially, I was a bit upset. I had to hold in my tears until after breakfast because then, in my whiteness I just started crying. Like a lot of other things I am forgetting, I was trying to remember what it was like when getting ready in the morning was a fun experience. Like all the times when you could get out of bed and brush your teeth and see what was in your closet and have several options for the day. Here I can’t remember what colors I have of my t-shirts, and really, unless I have a specific one I do remember, just go along with whatever they pick out for me. There used to be a time when at home my health care aide would even pick out some socks and jewelry to go along with my outfit. Not that any of that essentially matters anymore, but I think the other day what really got me was my hair. No matter how many times I tried to explain how I like my hair clipped back, it can never be done right. No one can do it just like Mom. And it was in that moment that all a sudden I got the homesickness again and just really wanted to be out of here. The thing is, that I know that I cannot, but as things progress, so does this white of a veil in my eyes, that in the morning time simply still cry out to God and say, “Can I just please break through this veil and see color again?”
The color white is usually one that represents purity, like a bride, which is why I thought of seeing through a veil. But the white in my eyes I consider a stumbling block. It will fade from the dark to a light color, and to where I can kind of make out shadows if people are wearing dark clothing. In my hours of sitting in whiteness I still ask God what comes next because I can’t see anything past this veil. The other morning I did remember a poem that I wrote in high school that’s called Crystal Clear Carpet. It says,
“Life is a journey
Starring on crystal clear Carpet
Dipped in heaven’s colors
To each of us a gift.”
Sometimes since then, in the way that I feel like I’m spinning in circles, even though I just sit, I try to think of all the things of how life is still a gift. In Michael W. Smith’s song, “This Is Your Time,” came to mind in which he writes,
“This is your time
And this is your dance
Live every moment
Leave nothing to chance
Swim in the sea
Drink of the deep
Embrace the mystery of all you can be.”
I don’t know how to embrace my mystery just sitting in a chair in whiteness, but today, walking back from physical therapy, not being able to see anything in front of me, but trusting my physical therapist’s arms around me with every step that I take, could be just a little bit of that mystery. And I could see in the greater picture that also might be my walking through this life, as if seeing through a veil might also be trusting that one day that veil will be lifted and now I can see color. Until then, I will just keep seeking even if I cannot see with typical eyes.
Jeremiah 29:11-14 (ESV)
11 For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. 12 Then you will call upon me and come and pray to me, and I will hear you. 13 You will seek me and find me, when you seek me with all your heart. 14 I will be found by you, declares the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, declares the Lord, and I will bring you back to the place from which I sent you into exile.
My Life with NF2 