Tuesday, September 17, 2013

Four Hours A Week

The debate of the semester (between my counselor, my friends who have the same illness I have, and myself) has been a heated one. It has been this, which should be a simple question, why is it that I can be little miss advocate all over Facebook, to my doctors, in the classroom, and more but not stand up for myself at clinicals?

Why do I insist on going every week and refusing to advocate for my needs fully in demanding to use my wheelchair? Asking to sit down while looking at charts? Taking my water bottle with me? Having my salty snacks with me? Why every where else but here? Why can't I advocate for myself at clinicals? This should be a simple answer, no? So why can I not tell anyone why I can't advocate for myself here, at the hospital? Why do I have to be super human here? Then I have to deal with the week long crash afterwards because I don't advocate for myself to get my accommodations that I deserve at my clinical sites. Why have I not been able to answer this 'simple' question that affects my health so drastically to anyone, including myself?

Well, I answered it today. For some reason, today, after a long day of clinicals, walking out of the hospital, on my way to my car, praying I would make it before I passed out, sipping on my water that just had a whole bunch of salt dumped in it to get my salt and fluid intake up fast...I answered my question without even realizing it...with all the chaos of my body going on, cars passing in front of me, under my breath I whispered "Damn, that was fun."

And I started bawling. That was the answer. 4 little words. After 4 long hours. After 3 weeks of not knowing why. It was such an easy answer. You see for 4 hours a week, I get to be a productive member of society. And I really, really miss that. I really miss feeling useful. I really miss feeling needed.

For 4 hours a week I get to pull my hair out trying to remember equations I learned 3 semesters ago and put them into use. I get to try to figure out what diet is best for this patient, what diet is not so good for this patient, is this patient going to even listen to me no matter what I say. I get to try to do math I can barely do because I have no oxygen in my brain because I've been standing up for far too long and all the blood is pooled in my feet. I get to look at labs while I'm trying to fight off the hot flash I'm having from the drop in blood sugar I'm having. And I love every second of it. Those that I can remember that is. ;)

For 4 hours a week, I get to be the person holding the chart. Not the person that the chart is being dictated about. I get to be the one making the medical decisions. Not the one the decisions are being made about. I get to be the one looking at the labs, not the one getting the labs done. I get to be the one making sure the patient is eating properly. Not the one getting checked on to make sure I'm eating and ordering enough food and that my food is the right consistency. Today I got to assess and do a plan for a patient by myself for the first time ever. That means I had to find everything all by myself in the chart, do the plan, find the calorie intake level recommendation, etc and then go in the room and talk to the patient and educate them, and then come out and write my diagnosis, recommendations, and monitoring and evaluation recommendations. And it felt amazing. Maybe that's why I had this breakthrough today of all days. For 4 hours a week, I'm not chronically ill. For 4 hours a week, I'm not sick. For 4 hours a week, I'm not a patient in the hospital. For 4 hours a week, I'm the one treating the patients. For 4 hours a week, I'm the one making people feel better (hopefully). For 4 hours a week, I'm the one that is making the decisions that will impact their care. For 4 hours a week, I'm normal.  And this part of my brain turns on, and I can't turn it off.

Humans need to feel needed. Humans need to have a purpose. We are created to be useful beings. That is why there are so many instances in the Bible where there is mention of doing good work and deeds. Because we are made to do things. We are not made to sit on the couch and do nothing for the rest of our lives. And that is exactly what having a multitude of chronic illnesses at such a young age where you are told that you will never be able to work again does for you. It sucks your purpose right out of you. And with it goes your joy. Even if you don't mean for that last part to be true and do everything you can to make it stop. When you lose your dream job at 26 and then start taking classes for a job that sounds really, really cool that you know you will never be able to work at in the typical way it makes you wonder what your purpose is. Right now, I am not sure what my lifelong purpose is. No. But I do know my purpose for 4 hours a week I get to change lives and do what I would like to do full time for a small amount of time. Today, I don't think I found my purpose, but I think I remembered it. And I know I fell back in love with dietetics. And I know I fell even more in love with God for helping me realize my purpose, especially given how perfectly this fits in with what tomorrow's blog was/is going to be already (stay tuned)! And it caused me to walk out of the same hospital today that I walked out of crying Friday as a patient frustrated beyond belief after another stupid test, bawling my eyes out because I had finally found my purpose there, I had finally figured out that I love being there (as a staff member/student intern/whatever). It's so important to always remember that you always have a purpose, no matter what you think. There is always a purpose for your life. Always. Don't ever forget it. And always go after your dreams, because they just may come true, walking out of a hospital, that you've walked out of 400 times (as a patient and a student), thinking different thoughts, until it hits you over the head about why you are really there. 


  1. I'm so glad you wrote this post! I get it, and I'm glad you figured it out. I have been screaming this (screaming in my head, softly pleading it out loud) for the past 7 years. A lot of times I still feel like I'm watching from the sidelines even though I know that I DO contribute. Trying to raise 2 kids is an obvious contribution, but trying to do so with dysautonomia (among other things) can make one feel like their coming up short all the more. For the brief time I was back in school I felt more accomplished than I had in years. Starting Sapling Stories was my saving grace. It morphed into something that I was passionate about (funny story: I originally stayed away from health advocacy because my cousin had already started Just Mildly Medicated and I didn't want to be a copy cat. Never mind that I had started a support network years ago on xanga - wow, I feel old)... Anyway, sorry about my rambling. This just really hits home for me :)

  2. I'm so glad that you're so glad I wrote this post. And I know I do contribute (and in other ways besides this too). But it's so hard to realize it sometimes. Sometimes school makes me feel so unaccomplished, but accomplished at the same time, if that makes sense. But today I felt like I had real, real purpose.

    And don't feel old. I had a xanga too. Though I didn't use it for health advocacy, I used it to track my mountain climbing and hiking escapades. But what will be will be ;)