What good are words?

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“The words. Why did they have to exist? Without them, there wouldn’t be any of this. Without words, the Führer was nothing. There would be no limping prisoners, no need for consolation or worldly tricks to make us feel better.
What good were the words?”

Markus Zusak, The Book Thief

I just finished The Book Thief and I can’t help thinking how timely it is, how appropriate that I find it ten years post-publishing instead of as a high school student. I can’t help but parallel its setting to present day, as the United States slowly reduces the boil that’s been bubbling over for a majority of this year.

An elected president most would never have expected, yet we are all implored to offer him respect and support as he criticizes the manner in which people congratulate him on winning the presidency.

Confusion as we just “don’t know what to believe,” everything is questionable, unless it directly lines up with what we want to believe. Is the media rigged? By whom? Aren’t we the media now, too? Are we just as unreliable? Or are we entitled to our opinions as fact – if we believe it just enough, will it be, and is it, true?

I relate to Liesel Meminger, a foster child living in Nazi Germany as Hitler comes into power, in the above quote. She’s sitting in a home library in 1943 with the snowflake-remains of a book she’d just shredded surrounding her on the floor.

What good are words anyways?

If it weren’t for those damn words, we wouldn’t be fighting with relatives, friends and coworkers – or complete strangers. If it weren’t for words, how many wars, ranging from spats between neighbors to global entanglements, could be avoided?

If it weren’t for words, people wouldn’t have to be comforted and told that a threat made on their life was empty and shouldn’t be feared, or reassured that what kids say about you at school doesn’t have to define you. Or should it? Is it fact? According to him, or her, yesterday or today?

As usual, I’m looking at the big picture, which I’m often criticized for, but I naturally lean towards that.

In the traditional sense, I’m not all that cultured: I’ve never been out of the country or west of the Mississippi (though my eastern experience is better), all my closest friends are white just like me, and my permanent address has been in the same small town from the time I was about 7 months old. So when considering my “big picture,” I recognize that plenty of others have a lot more to work with, and just as many have a lot less.

What I have had, like Liesel, are books and an environment that gave me lots of little experiences to shelve into my library of The Big Picture.

And for most of 2016, I’ve been writing about a lot of these little experiences in a green military log book (so sturdy. so vintage.) given to me by an internship supervisor while she purged some file cabinets. So, I guess words are good for something like that.

There’s other things, too.

I was in a used book store recently, one I’d never visited, but was incidentally located in the city I was born in (this would be those 7 or so months not in my current town). Whether because of the physical size or because I don’t remember the last time I was in a shop of this sort, it just felt inherently good. Just as I found a book to take up to the register, a woman came in asking if the store was hiring. I thought it would be quick, but after the older woman behind the counter explained that they weren’t, the visitor asked if they knew of anywhere else that might be hiring; her voice cracked as she continued on and said she was homeless, then quickly thanked them and turned around to leave.

Whether real or imagined, I felt rolling waves of shame, disappointment and then self-criticism at too-high hopes, coupled with an overwhelming urge to just go and hug this lady. To encourage her, find a resource for her or guide her in the right direction, something.

When she was almost to the door, the older woman called out to her, took some tissues and then walked her back. More words. Maybe they could help her. The shop visitor said she was a military veteran, and that she just wanted to get her life back together. It felt so trivial to be waiting to buy my silly book, and prying to listen in on this conversation about someone who’s basic needs aren’t being met. From the remaining snippets I gathered, it turned out that the older man also behind the counter owned the book store and was involved in the social assistance agency next door. It sounded as though proceeds from the shop went towards the agency and helping people find work.

What were the odds? Some information was given to the woman, plans were discussed, and seeing as it was already after-hours, she promised to go to the assistance agency the next day it was open. Thanking them again, she left.

Was she really homeless? Or a veteran? I can’t prove anything she said. But if it is true, timing and words and a kind man and woman and their words may be able to do a lot of good for her.

Words can do so much harm, cause so much confusion, but also so much love, laughter and knowledge and that’s where their real strength lies. That’s what I intend to draw from going forward, using the strength of words rather than their divisiveness.

What good will they do for you in the next year? How will you choose to use them?

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Realizing just how out of shape you are

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Back when I was actually fit, hello 2010. Of note: pointing lady who I’d like to think was totally amazed by me (but probably pointing at her child), and Hershey-shirt guy, which just seems ironically fitting.

Metaphor of the day: fitness.

I did some math and for the past two (business, because nobody’s open on the weekend) weeks, I’ve been on the phone for an average of 40 minutes a day trying to get that damn medicine I spoke of in my last post. Probably longer since I’m not including the random phone calls I took on my home phone or the calls made earlier in the month of November.

I spoke with state offices, local offices, several doctors offices, a random specialty pharmacy in Michigan, my own specialty pharmacy, my insurance, and my insurance’s pharmacy benefit manager (which I had no idea was a thing before all of this).

Also, I now know over a dozen people among these entities by name, and I’m sure they know me as well. I’d like to think I was polite throughout this whole thing. Persistent and pestering, completely, but polite (and towards the end, slightly pitiful and a bit dejected – but when you constantly inform me it’s going to be “another 24 to 48 hours” for minor info verifications, I have no regrets for inducing some minor guilt).

My new best friend turned out to be “Tim” from my insurance’s pharmacy benefit manager (PBM) on Thursday night. As I said, I had never heard of a PBM prior to this whole mess, but positive, I know more about our shit-tastic healthcare system?

Anyways, I caught Tim twenty minutes before he was supposed to leave work (sorry) and spent a solid half hour on the phone with him as he set up a three-way call with the pharmacy and proved that this whole comedy of errors was on said pharmacy’s end (which took about 22 of the 30 minutes, plus multiple holds, me nodding off, some jokes from Tim, and crappy elevator music).

Eventually: “OK, so it actually was something we had in our system.” *facepalm*

Pharmacy then launches into setting up my order, but forgets to disconnect Tim first, who has done his part and I’m 100% sure does not care to be a part of this, but if he hangs up, there goes my order (el oh el). I apologized after the pharmacy hung up that he got stuck with that, but he said it was worth it and I proceeded to thank him more profusely (going to be sending a note of some sort to this place as well) than may have been necessary. Lastly, I’m not positive his name was Tim… I’d been without my meds for a full week at this point, and since I only spoke with him once, instead of the 5 or 6 times I had with David, Sherry, LaToya (sp?), Jenny, and whoever else, I feel this is forgivable. Sorry again Tim/Tom(?)/Jim(?)/Christopher(?).

After over 6 broken hours on the phone this past two weeks, and threats from my mom to call any of the places I listed above to literally just yell at them, my medicine arrived yesterday.

So what’s fitness have to do with the diatribe above?

I slept heavenly last night. It was fabulous, rejuvenating, restful – just what I needed.

And I feel like absolute shit this morning.

Because I (again) know how tired I am. If I haven’t run/worked out in a while, and I just wing a 40 minute workout or 3 – 4 mile run, it might feel good at the moment, but later that day or the next, reality will very quickly set in and I will not want to do anything physical for a week.

This is the same thing; I have to get my sleep muscles back. It may have been less than 10 days, but if you were significantly overweight and had been exercising/eating right the past 6 months, you might have only lost 20-30 pounds. You start feeling better, but stop for two weeks and it’s just as difficult starting back as it was the first time. Give it a few days and it’ll get better though – you’ll remember, and you’ll keep going.

And that’s where I’m at. I may be physically exhausted, uncoordinated and cognitively slower than normal, but I am happy. Content in my fatigue for the time being, because as long as I put the time in, my body will remember here in a few days, and I’ll be ready for the next thing.

When life gets tough…

This is the first thing I’m doing this morning. If I don’t write now, I won’t. Life is indeed tough right now. It’s funny.

I said, way back when, that I didn’t know what this little project would turn into. Now my name’s on it, so I can run but I can’t hide.

I started this fancy new medication back at the beginning of June for my dear narcolepsy, and it’s taken the majority of the past 6 months for me to start feeling a difference. June, July, August, most of September, less of October, and parts of November (when I was sick, ugh) I hovered a few ticks above and below where I’ve been for approximately the last three/four years. I knew I had to be patient; while I didn’t physically feel all that different for a long time, I was much more aware of it. Prior, my focus was always school, family, volunteering, clubs, sorority, group projects, friends, jobs, preparing for grad school. This time, there were barely any other distractions (besides the ones in my head), so when I started to feel a difference, I knew it wasn’t just me rushing to make a burst of energy that I’d regret later.

I’d wake up and feel like I’d actually had a night of sleep and could take on the day – I started planning and prepping for the future.

I’m learning that the future isn’t ready for me yet though, because if I’m not taking care of the present, the past will just keep repeating itself.

Case in point: that fancy medication I mentioned? I haven’t had it for a week now, due to silly regulations, fine-print and general lack of urgency in our healthcare system. And when I say fancy, I mean extremely expensive and difficult to obtain. Sadly, no doctor is going to have any samples of this chilling in their office, and neither will any U.S. pharmacy, save for the one holding my prescription hostage (kidding… kind of). Considering I’ve spent about an hour on the phone every (business) day for the past week pestering various entities, I don’t think I’m the only one ready to have my medication again.

When you have narcolepsy, you brain has essentially forgotten how to “deep-sleep.” This is not exactly the same as REM sleep – which seems to be the coveted stage among the public. If you aren’t dreaming, you aren’t getting good sleep, right?

False, for the most part. Yes, you need REM for processing information from the day, but if your body isn’t restoring itself with some dead-to-the-world sleep, it doesn’t matter how much information you’ve got in your head – you won’t be able to use it (alternatively, if you are getting the best sleep on the earth but have no processing of information, you aren’t going to be all that useful). I have no trouble dreaming. In fact, that’s what a majority of my time spent sleeping is. I also have the oh so awesome ability to dream while awake, which sounds cool when you say it like that, but it could actually be that I’m hallucinating. Ya know, the same thing we judge people with schizophrenia for?

In fact, I dream so much, I have memories of my dreams. I usually remember anywhere from 2 – 4 dreams each night, in explicit detail. And not just for a few minutes after I wake up; bits of my dreams will pop into my head throughout the day, not just from the previous night, but from several nights ago, or several weeks ago. Or longer. Since starting this paragraph, bits of five different dreams have popped into my head, that I had from between 1 and 10ish years ago. I can’t recall them on the spot, and have since learned to not try.  Sometimes my dreams mesh with each other, or when I’m in one dream I’ll be reminded of an event in another dream and they start running together.Then those start running into reality… Coupled with the fact that language becomes harder. I mean, it’s taken me three days to finally get this coherent. It’s not that I can’t speak or anything, but I have to put a conscious effort into responding to people – think about what they’ve said and then what I’m saying. Usually it just means my sentences are slow with a bunch of pauses; sometimes I have the thought and after a few words the other end of the sentence flies out of my head.

If you had seen me, for instance, 10 days ago when I took my sister back to college after Thanksgiving break, and compared it to now, I’m like two different people. That’s how quickly I’ve been slipping back to where I was before starting that medication. The medication that’s taken 6 months of discipline and lifestyle changes to get me to where I’ve been, suddenly isn’t available. I could make a 4-hour-round-trip driving, run a few times a week, interview for a job, see my friends or even leave the house more than once a week. Sure, this came with sacrifices, including:

  • pretty much can’t drink anymore
  • have to be aware of when I eat
  • have lost a significant amount of weight
  • still need a nap almost every day
  • obsessively organize exact time-tables if I’m staying anywhere overnight or have commitments before noon

But I couldn’t care less. I have energy! I’m AWAKE! I can DO THINGS! It’s been amazing!

key_drawing drawing by yours truly to break up the wall of text

I wish it were as simple as finding a key in front of me to unlock this mess, but it is not. It never is. I don’t want anyone to pity me with writing this – it sucks. I’m frustrated, angry and would love nothing more than to figure out how to prevent lapses of very necessary medications, or how to make coping with situations like this more accessible. And to also get my meds.

I’ve already outlined the situation to a research survey I’m participating in (which conveniently contacted me this week for an update) – I know I’m not the only one who has dealt with this. But I’m going to try and find more platforms to bring attention to this problem, because I (as far as I am aware) completed all steps on my end of this ordeal in a timely manner, beginning in October. I prepared ahead, then promptly completed other paperwork, and still I am told that I need to do x, y, and z to fix a systemic issue. Ping-ponged back and forth between pharmacies, insurance agencies, doctors offices,  and call centers as both the middle man and the customer/receiver of care.

This is tough, yes, but I can handle it. I survived 8 years of high school and college like this. Writing about it gives me a voice and strength – I’d suggest it to anyone in their own tough spot. If I can write 1,100 words running on the equivalent of 2 hours of sleep for many other people, you can objectively complain as well (please know what you’re talking about though, or else research it). Along with that, writing gives me confidence, which besides energy, is something I will always be happy to have more of.