Category Archives: Summer 2011

Doubting

I have not done a very good job of staying on top of this experiment… its like that mold you plan to grow in to the shape of a unicorn or something, but then all the life and the friends and the adventures catch up with you and your left with a hunk of disgusting in the back of your pantry…

I hope this isn’t a hunk of disgusting mold.

Anyway. For all you non-existent readers who don’t know, my summer has thus far been spent living out of a tent in Slade, KY (hence the lack of connection to the real world/ the internet). I’m babysitting one of the coolest little kids I’ve ever met, climbing, and relaxing, all away from the humdrum of suburbia. I love it.

But its certainly been an adventure.

Let’s just say there was a lot of drama followed by calm. What started badly has turned a corner, and the last few weeks here have been truly enjoyable… minus the sick.

The foggy summer nights and long, hot days have been full of everything I could ask for: good people, rock climbing, and lots of sun. It has all been tainted, however, by the sick. While I would normally be on cloud nine, Ive instead been struggling with very low energy, lack of motivation, a near incessant nausea, and the pain that not eating tends to leave. Even with my feeding tube and being on formula, I have not been able to get near enough calories or nutrients that I need, sometimes going for days on potato chips alone. Sometimes, I can’t deal with this. There have been nights that I sat lying awake, wondering what I’ve done to deserve this tortuous set of circumstances, wondering if it will ever cut me slack, and wondering how I will keep dealing with it if it doesn’t, and nights I’ve sat on the verge of tears, thinking ‘I’m too tired to keep doing this. I’m ready to be done’.

When I first decided that I would come here this summer, this whole situation was one of my biggest fears. I still don’t know what to do about it. I try so hard to not think about how it is I feel physically to get the most out of where I am and the rest of my situation, but these efforts are often for naught. I wish I could say I was strong enough to not focus on it.

My potentially deteriorating health, alongside this mental breakdown, has been challenging as well. Not only am I feeling worse, but I also doubt my ability to assess how I’m really feeling. I can’t convince myself that it is truly worse than before, there’s always the doubt of my sanity or my strength that creeps its way into my peripherals. It whispers, “You’re not sick, really. You just want attention. You’re making yourself feel this way, if you’re even really feeling anything at all. You’re just too big a coward to face real life and too weak to do what you need to do to feel well.” I don’t want to believe it.

After talking to my doctors in Denver about the whole situation, they have made this matter even worse for me. Instead of giving me the definitive “Yes, please come see us now” or “No, it can wait til before you go back to school”, they have decided that its my choice to figure out whether I need to go now or wait it out. I honestly do not know what to do. If I go now, and its nothing, then I’m just wasting everyone’s time. If I wait, and it is bad, then not only do I run the risk of missing school right off the bat, but I have to wait the rest of summer feeling the way I think I do. I can’t decide if it’s worth it to stay here with the frustration and doubt and combined physical and mental exhaustion all of this has brought on. I do not know what to do. I do not know what to do. I do not know what to do.

 

 

Besides all the medical stuff, though, this summer is proving good for me. I’m learning a lot about myself and finding ways to slow everything down. I am also being forced to learn to make decisions, which is good for me, I suppose.

Heres to hoping summer brings adventures yet, at the APFED conference, the rest of my dirtbagness, and the return back west for doctors and school and friends.

 

“If man will begin in certainties, he shall end in doubts: but if he will be content to begin with doubts, he shall end in certainties.” –Sir Francis Bacon

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Unfinished Business

Schools out. No tests to study for, no presenations, no papers… well actually, I do have one of those yet… another day, though.

Ive been home for about 5 days now… its been very strange. Ive loved seeing everyone for sure, and sleeping in my bed is nothing less than heavenly… but all very strange none the less. Siblings are still in school and parentals are working, so I have the house to myself almost all day, exept for Rusty… but he doesnt count. He sleeps as much as I do. I feel so utterly useless during the day. Then, when my family finally gets home, Im off doing other things (endurance is coming back, slowly but surely).

Anyway, all this sitting time has left me focused on two things: how Im feeling and life. (Broad topic, I know.) Ill start with the easier. One of the nicest things about being home has been the ability to talk to people face to face about gut problems who understand… like tonight at dinner, there were 4 of us discussing our bowels. It was fantastic… and amusing to watch the expressions of the other people at our table 🙂 Im slowly realizing what sort of situation Im in, though. I tend not to think of my situation as espcially serious. Sure, I have a tube, Im not really eating food, I cant tolerate eating much of anything… but everyone is a little screwed up, right? Tonights discussion and the last few days have me wondering if my gastroparesis is getting worse (I know this is really information you want to know)… and it makes me nervous. I had been doing really well with not feeling nauseated after eating/feeds for the last few months, but the last few days have not been good. Ive had to stop eating/feeds and have wound up venting my stomach a handful of times already. It seems like its that and a potential reaction… but I havent really added anything. I dont know. Its frustrating, and Im worried something drastic will happen while Im in Kentucky… I know it wont… but what if?

Thats all just my surface level worries though. As per usual, Ive let my brain slip into the depths of things I dont necessarily want to think about. All this visiting is making me realize all that Ive missed and the fact that this is not going to be a permanant place for me anymore. I really miss everyone here… it hits me hard everytime Im hanging out with them. Im torn between feeling like I should just stay here and fall back into the comfort of all of it, or recognizing my need to be elsewhere and to keep here as a point of refuge. Its all very confusing sometimes.

(Side note. Ive learned how to spell definitely. The word feels different now, as I think “def-ina-telly” now, to remember how to spell it. Funny how words get such a feeling to them.)

I let this sit for too long. Last edited May 14th, the feelings have changed. So Ill post this. Sorry if it leaves you feeling incomplete or something… You being my non-existant audience.

“Can anything be sadder than work left unfinished? Yes, work never begun” -Rossetti

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