So today I received a call from Mayo Clinic informing me that the department they would refer me to is not accepting new patients. Therefore, I will not be able to go there for testing. My reactions always surprise me most, because I never plan on getting emotional. Today, however, I couldn’t stop the truck that hit me and I quickly found a vacant stairwell to house my meltdown.
I don’t consider myself to be an emotional person. I can usually reason away feelings before they get to me too much, but today I think I just collapsed. I have been fighting this for so long, and although I was scared to death to go to Mayo, it was one of the few hopes I’d allowed myself to believe in. I felt myself becoming disillusioned again about doctors and wellness in general, and I wanted more than anything for someone just to come and pick me up, maybe just for the sake of being held. I feel ashamed even admitting that.
There are some things (well a lot of things) that have been really bothering me today, and I just need to get it out. I don’t think I’ve ever seen myself just give up like I did today. People meant well by asking how I felt, what the next step is, or simply telling me that I’ll make it through, but something inside of me was very resistant to hearing any of it. It’s like my spirit was angry at the thought of anything outside the moment or analyzing my emotions. I couldn’t even fathom the idea of telling “my story” one more time, even to people I was close to. My best friend asked me how I was feeling and I ended up telling her that I was too tired to give her an answer. I really needed to talk, but I literally couldn’t, and I’ve been like this all day. My mom wanted to discuss options, and I basically shut down. I didn’t like this about me at all.
I don’t know how to feel about any of this or even how to be. I don’t even know what I should be. I’m a fighter, and I don’t give up, but I think the thought I can’t stand the most is living for myself all this time. I feel like this whole process has made me so inward-focused, and that frustrates me. I don’t want to live a selfish life. In that regard, I would so much rather give up trying right now and live the rest of my life just dealing with it. Life is short, right? I’ve lived with this for 8 years; what’s another 17? (I’ve had a long-standing joke that making it to age 40 would be quite an accomplishment). I want to leave myself behind and focus on the needs of others around me. When I think about how I want my life to be defined, thinking about myself isn’t even on the radar.
There is a major flip-side to this coin. At the rate my disease (or whatever the heck you want to call it, apparently it has no name) is progressing, it won’t be too long before walking is a moment-by-moment struggle and my intestines start shutting down. In a lot of ways, both have grown to be pretty debilitating, much more than I want to admit to anyone. I can’t believe, if I am honest with myself, that I have to live like this for the rest of my life. I have dreams from as big as running an orphanage to as small as being able to ride my bike again. I hate being defined by this box I live in. I’m a free spirit, and yet I feel so trapped. I’m getting claustrophobic.
Part of me wonders who would ever want me like this. I’m a mess, or so it looks like. I don’t want to leave the impression of what I can’t do; I want to be a treasure worth having and knowing. What is left of me at the end of the day? I guess I just have to trust that God can make beauty from ashes.
I don’t want to miss this unique journey that God has planned for me, but I am fighting a resentment growing in my heart. Yeah, trusting God isn’t as cut and dry as they teach you in Sunday School. How do I trust God? Do I keep fighting or do I stop the doctor stuff here and now? Here I am pretending that I even have a choice…
You see, somewhere over the rainbow there aren’t going to be any more tears, but as a 23-year-old, I certainly hope I’m nowhere close to that. It’s easy to get lost in that thought, and I have begged God to take me at times. Especially when I lie down at night; that’s when things are the worst. However, even in the midst of all of this, I want to live, and I want to live well.
I hope I’m not bearing my soul too much. I feel like I have been on display lately because of having to go through all of this. It seems that I have no secrets anymore-almost. I have fought trying to keep some of this to myself for so long, but I don’t even care anymore. Maybe that’s how I’ve been feeling all day: like I’m tired of caring. There’s something about having to fight a monster that makes you realize sometimes you’re pretty sure you’re losing. But where do you go from there? Today as I sat in the stairwell, I felt as if the weight of the world was on my shoulders. I longed for someone to come and fight this for me, and then I realized that no one else could. People could walk with me and give me comfort, but this is my burden alone to bear and my battle alone to fight.
People who have never gone through something like this are quick to admonish me for saying that. “You are never alone! Jesus is with you!” And yes, that is true. I don’t know what I would ever do without Him. However, He does not always take away the sting of pain or the overwhelming suffering. I still feel it all, and sometimes trust feels like a hand reaching in the dark toward His presence I have learned to know is there. It is a heavy thing to carry. Right now, I’m in so much pain, all I want to do is sleep. Do I keep pressing on or do I give in? I have no idea.
However, in the midst of the darkness there shines a light that is brighter. This joy that God gives cannot allow the sorrow for long. I love the book of Lamentations because it is so honest. There comes a point in chapter 3 where the author just can’t hold back the light anymore (vs 19-38):
“I remember my affliction and my wandering,
the bitterness and the gall.
I well remember them,
and my soul is downcast within me.
Yet this I call to mind
and therefore I have hope:
Because of the Lord’s great love we are not consumed,
for His compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, ‘The Lord is my portion;
therefore I will wait for him.’
The Lord is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the Lord.
It is good for a man to bear the yoke
while he is young.
Let him sit alone in silence,
for the Lord has laid it on him.
Let him bury his face in the dust—
there may yet be hope.
Let him offer his cheek to the one who would strike him,
and let him be filled with disgrace.
For men are not cast off
by the Lord forever.
Though he brings grief, he will show compassion,
so great is his unfailing love.
For he does not willingly bring affliction
or grief to the children of men.
To crush underfoot
all prisoners in the land,
to deny a man his rights
before the Most High,
to deprive a man of justice—
would not the Lord see such things?
Who can speak and have it happen
if the Lord has not decreed it?
Is it not from the mouth of the Most High
that both calamities and good things come?”
I feel that most of my blogs, especially lately have asked more questions than anything, and I guess (was it Plato?) that’s a pretty good attitude to have. There’s just so much in my life that doesn’t make sense to me right now. I guess it doesn’t have to. There are two things I hate: being weak and being vulnerable. I feel that I am both right now. I feel incredibly alone. I don’t know how to reach out. I was telling a friend tonight that I never know how much people want to hear, so I generally air on the side of caution because nobody likes “too much information.” I feel like I can write on my blog, because people can stop reading anytime they want to, and I’m not imposing on their politeness and time. Sometimes, like today, I couldn’t even talk at all. I just wanted a hug. If my mom would have been closer than 8 hours away, she would have definitely been there. I’m eternally grateful for the support of my family. It will be them and the grace of God that is going to carry me through. I’m at the end of my strength right now.
I guess maybe I should go get some sleep. I just want to say this: I am so blessed. Thank you, Lord, for entrusting me with Your story.