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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