Oh yea, I took a trip last weekend

I wrote 620 words over the past, oh… five days before I took a look at my recent blabberings and realized I was repeating myself once again. More of the self-comparisons between real and typed life, more explicit confessions of not knowing why I’m doing this, being a constant over-thinker and over-achiever, not being happy where I’m at, etc etc etc.

“You’re not giving yourself enough credit,” said my therapist earlier this week. As she reminded me, I really am doing better than I think. Of course, I immediately begin comparing that ‘doing’ to what I *could* or *should* be doing. Alone and with my therapist are apparently the only times I can admit that I am not always looking-on-the-bright-side as I appear. In the presence of most family and friends, I can believe what I’m saying as I pretend to give myself credit in order to come off as this strong, pushing-through-my-hard-times kind of character.

I’ve half-jokingly told people that I wouldn’t change how my life is playing out because a majority of people I went to college with are now graduated, have done the whole move to a new place, get a new car/apartment, start the first job schpeel, and now… that’s what they’re doing. Working 40 hours a week, driving the same commute, living for the weekends where they can drink, go to a concert or the next wedding they get invited to and update their family on their jobs either being good or bad. The next step usually seems to be either adopting a pet or taking a trip out of the country.

I’m simplifying obviously, but that life is so unappealing to me. Which, I guess is convenient considering 28-hours this week at my part-time job felt like almost too much and I don’t see myself capable of more anytime soon.

If you are that person living that life, I don’t mean to criticize. I know it’s the one expected of us right now; it’s supposed to be the one that’s attainable for everyone and provides the kind of lifestyle that leads to well-rounded happiness. I hope you are able to create meaning, take care of yourself and pursue things outside of work – it just seems so unfathomable to me for any length of time. I did it for one semester in college and then about two months early this year. And each time my health deteriorated the longer I went. I’d need the whole weekend to recover, and with the timing of my medications during the week, my only priorities after work were to shower and eat before going to bed. And trying to live like that with either a partner, pet, or child(ren)? I don’t know how anyone with a chronic illness does it, but if it involves any of the shortcuts, thought-patterns and sheer willpower I felt I used, that is not living, it’s surviving.

stlouisskyline
panoramic night skyline of Saint Louis with lit buildings of varying heights from left to right

This time last week I was in Saint Louis, having just finished a day-long conference for people with narcolepsy. Speakers included Thomas Roth, PhD and Ariel Neikrug, PhD. The former defined the differences between narcolepsy and hypersomnia in a way I’d not heard of before: I’ve always considered narcolepsy to be it’s own hellish form of sleep deprivation because we do not get adequate deep-sleep at night. Unlike the average person, our sleep patterns bounce up and down like a pogo-stick, whether we actually wake or not. Roth presented narcolepsy as not sleep-deprived, but sleepy – that’s it. I questioned him on this and am still wrapping my brain around this new definition. To be clear, we are not more or less tired than anyone else – in fact, the murkiness of tired’s definition is probably why so many loved ones have such a hard time understanding narcolepsy.

If I told you I was soooo tired, you’d probably agree with me. Who is not tired these days? The more you think about it, the more tired you become. If I were to instead tell you that I am very sleepy, I may at that point be having trouble keeping eye contact, my head may be bobbing or I might forget a point I’m trying to make mid-sentence. There’s a clear difference here, but at the same time, in my own experience, ‘sleepy’ just sounds… weak? And yet it is more than tired – I will either be physically incapable of ‘just pushing through’ this or make some serious errors in my desperate attempts to fight my own broken internal clock.

Roth also reviewed the Epworth Sleepiness Scale (which measures how likely you are to fall asleep doing things such as watching TV or driving), Swiss Narcolepsy Scale (measures for symptoms of cataplexy mainly), and the diagnostic process for narcolepsy – things I’m all now well-versed in, but have to remember that these are not mainstream terms or procedures for a good number of people with narcolepsy, let alone without.

Dr. Neikrug continued a conversation started last year in Chicago by newly-elected Society of Behavioral Sleep Medicine (SBSM) president Dr. Jason Ong. There is a small, but growing number of practitioners who are doing research and practice on the efficacy of Cognitive Behavioral Therapy (CBT) as a treatment for sleep disorders. Having used CBT myself treating individuals with chronic pain, I know there is promise for this when presented and implemented correctly, and as someone with both therapeutic experience and a sleep disorder, I can’t help but think that this, this right here, could be something I want to be a part of. The question is how; how would I get my foot in the door of this niche if I can’t gain more experience working in a hospital or other center full-time? How do I start something where I’m at, when I was fired by one of the largest providers of mental health services in my state, because of my inability to work full-time (because of narcolepsy)?

I’d rather not end on that note though… after I took my token grainy panoramic picture on top of the City Museum that night (which, 10/10 would recommend to anyone visiting Saint Louis), I was at least able to enjoy the breeze on my face, twinkling lights and simple opportunity to be in a completely new place for the first time as a welcome reprieve from the sticky buzz of Saturday night attraction-goers just below me.

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What do I want?

It seems like I should write about the fact that I’m helping move my sister into her apartment tomorrow for her senior year of college. Or that I’m going to a narcolepsy conference this weekend (I’m excited for this – I learned such a great deal at the one last year and hope the same will go for this year). Or the disgusting white supremacist protests in Virginia. Or something else – it’s always what I feel I should write about.

What do I want to write about? Start, stop, contemplate. One, two paragraph and then scrap it. I should be doing something other than writing says the little voice in my head.

The voice I live with said the other day “I don’t know why you didn’t just hurry up and eat so you could go with her. What are you going to do, sit on your laptop?” This was deeply triggering to me for some reason, and I spent the better part of an hour after this interaction trying to figure out why.

“I just thought it’d be nice for you to go with her.”

The tone had me nervous, justifying and trying to explain myself – trying to convince her that I was still going to be productive. I heard myself say that I actually had things to do, like finish my laundry, do the dishes and clean my room. All I wanted was rest. To be clear, I’m in no physical danger. This is my mother, who allows me to live with her, pays for most of my food, my car insurance and phone plan among other things. I’m grateful.

The problem is that there is always an undercurrent of not being grateful enough.

Not what I want…

I don’t want to be writing about my mother. I want nothing more than to have a healthy relationship with her, especially at this point in my life. I should right? The shoulds both drive me and torment me – I should be living on my own, in a different city or state perhaps, should have a job doing what I love and have expertise in, should be dating and falling in and out of love, should be doing little things to show appreciation to my parents for all their hard work in raising me. Some of those I know aren’t possible, others feel like they are, but it’s me not putting in the effort.

There was a period of about 6 or 7 years where I saw myself as a complete failure more often than not. I didn’t share these thoughts or views, and now that I’ve been working on it, I realize nobody else can tell a difference. It’s rather lonely. I want validation for ‘all’ I’ve been through, ‘all’ I’ve overcome, ‘all’ my potential – but how can I expect that if I don’t believe it’s true first?

Finding self-belief

I think the reason I keep alluding to the same things (over and over… and over) without any coherent story-line is because of the above. I don’t believe I have a story worth sharing, not really. I want someone to tell me I do, to tell me it’s safe and that there’s really something here. Is there?

Another issue: If I start telling a story, I feel like I have to do it perfectly. One story requires context from another story and then I’ll realize I’ve left something out in this part and then I just think that there’s no way I can… do my own story justice? How conceited! What the hell? My first feeling is disgust, but why? I don’t find myself inherently disgusting anymore… but I still see my own self-promotion that way. Everyone else, it’s fine, it’s great! People need to share their stories! I love hearing those pieces of people they’re brave enough to share and allow others to carry with them as precious treasures. It’s just… mine, at least anything beyond what I’d include on a resume.

It largely seems I just want to write about myself. And I feel guilty about that, like there are much more important things to address and it’s selfish to focus on myself. Yet here I am… How are other bloggers so vulnerable? How do they throw caution to the wind and allows themselves to just be, in all their glorious flaws, struggles and continuing lessons? Or face that fear of being found and having real life repercussions?

Chasing stats and other distractions

Not long after publishing two days ago, I got my first like. There’s always that giddy feeling of someone else acknowledging whatever you just threw out on the internet. Before long, there was another one. More affirmation! And then a third, a fourth – I found myself going back and forth between clicking the little bell and then checking various versions of my overall statistics. I had x views in June, and then improved that in July. I checked the past several weeks – each week had been better than the last. I can do this, I can make it. I just have to make a schedule, stick to it, start researching and planning out some topics I want to teach everyone about.

Yesterday was much of the same, but it didn’t feel as sparkly. I went through and visited the sites of everyone who liked my rambling about authenticity and no bullshit. Deep, esoteric thinkers, raw photographers, story tellers, poets and lifestyle/travel bloggers  that I’ll probably continue to stalk a bit and then decide to follow. But do I follow everyone, one at a time – would I leave anyone out? None, is it too soon?

The excuse of overthinking

Too, too much overthinking. Too, too much going on; that I see, hear, want to comment or write something about, do something about. I’ve spent much of the last year and a half with not enough: social interaction, money, energy, independence, gratitude, joyful experiences, purpose. Lately I’m having trouble deciding what my priorities are, and as a result have a dozen things juggling at once. Which is better than randomly accepting commitments as I used to, trying to be busier than everyone else. I am entirely past that, thank God, though I still have some second guessing guilt with each “no.”

I don’t want to be that busy anymore, ever again. As I state that though, I have an online puzzle waiting for me, and an unfinished podcast about marketing manipulation paused because I was wanting to write up some of my takeaways. And here I find myself.

It reminded me of how inundated I am with messages and knowledge from all corners of everywhere, in my pursuit of “learning” and how I bounce from thing to thing when I’ve consumed it but, having not processed it, can’t apply it yet. I get incredibly frustrated when, later I may try to explain the concept to someone and find that my understanding isn’t enough to relay it externally. In response, I go learn something else, consume another thing, I suppose hoping that this time it’ll just stick. Shitty cycle. I don’t know if that makes any sense, but it (kind of?) does to me.

Gotta publish by x time

I’m leaving my house soon, and already found myself battling the inner dialogue of “hey, if you publish this just before you leave, you can look at stats when you get back!” What’s my motivation for that? It doesn’t matter when I share shit (so, no idea yet). There’s also the worry that I won’t finish this if I leave it because it’s a little (lotta) all over the place. This is so damn uncomfortable because I’m the one who knows what I want to say, knows what I’m doing, can answer any myriad of questions or help you with any number of tasks. I know how to write something of decent quality, convince an audience of my point of view or educate a listener. I’m not doing any of that right now. I’m making up random tags, holding back on the ‘discover’ one because isn’t that a little too self-promotional right now?, and creating subheadings that have nearly nothing in common with what follows them.

Put it in a journal…

Yea, maybe I should. Safer there. I don’t know if my desire to share this sort of post stems from desperately wanting validation or if I think there’s utility in my mess. Makes me wonder how it would change; two posts of this ‘style,’ if I can call it that, is hardly enough to assume anything. Maybe in a couple weeks I’ll change this back, sweep out my dusty confusion and dribbling emotion and exchange it for a logo, marketing strategy, professional pictures and some sort of “product.”

The above just reeks of self-deceit right now; I’ve tried it and in no way was ready. I applaud those who are doing this authentically right now, in the near future, or have done it in the past. I felt like a fraud, incompetent, and beyond that, it just felt not right. At the very least, I’ve learned to trust that. Icky as this is, it seems a bit more right… I think.

A new look doesn’t change how loud my keyboard is…

I decided it was time for a change, because I’m not going anywhere for the time being. That means new layout, new post, new tagline that I’ll change when I come up with something better… and taking my (full) name off of what I’m writing because, although I’m aware anyone with enough time could track me down, that will hopefully be too much effort and I can enjoy at least the illusion of anonymity.

What’s my dilemma? Maybe the better question is what isn’t my dilemma? Right now, I feel like I need to explain everything. I always feel like that, and then I end up with way too much context. But I don’t have to do anything like that – the most pressing current dilemma is that I get anxious typing too much on my computer. I want to write so badly, but I stumble over words, start putting too much context, and then I’ll have my mom or sister ask me what in the world am I doing (ok, that doesn’t always happen, but I don’t want to say I’m writing… and then have them ask what I’m writing about, because I don’t have an answer for that either).

Another dilemma: categories. Why the hell do I have so many? It seems so cluttered, and I have some that might as well be multiples.

Underlying problems…

This is all to distract me from the fact that I’m disappointed in myself. Not every waking moment, but overall?

STOP SLAMMING THE DOOR.

Sorry, that was for my mom. I want to take it out, delete it, but… I’m tagging this with honesty so in it shall stay. I live with my mother and younger sister. My mother is somehow incapable of simply shutting the door that goes from our kitchen out to the garage. Instead, she slams it, as if she doesn’t have the time for that extra step it takes, or the door has a faulty frame that required extra “oomph” to ensure it stays closed. I also honestly think she just enjoys rattling the entire structure of our home, whether it’s 7 a.m. or 10:30 p.m.

My mom takes up a lot of my focus and energy. There’s a lot of baggage there, baggage I can’t just be sharing with the world because, I still live with her.

Everyone’s parents screw their kids up a bit – it’s a fact of life. It can be totally unintentional, but it doesn’t change the fact that it affects me. When in my case, my parent can’t acknowledge or recognize that she’s ever done any wrong (and now that I’m an adult, I’m not innocent either, I know), and I’ll just go ahead and say I feel like it was more than the average “oops,” well, it makes it that much harder to process and forgive and move on.

This wasn’t supposed to be about my mom or my family, but to hell with it – this certainly goes under the category of “underlying problems.”

Did I add too many tags?

Hello over thinking! My constant companion and ever loyal friend. Too many tags? Wrong category? Did I share too much? Is someone going to tell me how terrible of a writer I am? I’m trying to decide if I like the voice I’m writing in at the moment; it’s so uncertain and spastic, not at all the usual calm, articulate, knowledgeable one I try so hard to put out in public. Sure I let this out writing in a journal, but all the “how-to’s” expressly warn against this sort of lolly-gagging.

Door slam #2.

I’m not supposed to write like this. This kind of writing was for LiveJournal and MySpace and the early blogger sites. Not a professional WordPress site, or my personal brand.

Door slam #3.

Someone I know in real life might find this… and tell her… and then what? We haven’t had a good ‘fight’ in a while, so I am a bit worried we’re due, but can’t say for sure. Or maybe a future employer, although jokes on me because I won’t be looking for a full-time job any time soon! Fuck you narcolepsy. Can I say how good it feels to just swear in writing? I’ve been so tight-knit lately, and especially in pretty much all the writing I’ve done this year. Now I’m really questioning whether I should publish this, or make this dusty draft number 37 (hope I’m not the only one with this problem…) in my poor queue.  It’s so hard to determine if what I’m writing has any possible potential for value to anyone, now or later.

I have this little problem where I mistake my value for the image I think I need to portray, or the next accomplishment I see looming on the horizon. I can’t separate the two. I see now that it is, in fact, probably not good, but I don’t even know the extent of it yet. I’m kind of hoping to figure some of that out with this whole new look thing, but as I alluded to, a new look isn’t going to make my keyboard any quieter and I’ll just have to get over that.

So, yes, this is different. And scary to post. Because it’s me… not Advocate Me, not Recreation Therapist Me, not Equestrian Me, Sister Me, Runner/Healthy Me or Academic Me, or even Political Advocate Me, it’s just… me.