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 … Continue reading Realizing just how out of shape you are
The medication that’s taken 6 months of discipline and lifestyle changes to get me to where I’ve been, suddenly isn’t available.
Now, moments of clarity when I started to understand a bit more about the housing crisis. Mood: ominous clouds on a highway. I watched The Big Short last night, on Thanksgiving … Continue reading Takeaways from the Great Recession
I’m deciding what to do with this space.
Because right now it’s just a mish-mosh. Kind of like my life. Feels like it’s on the verge of changing, but not quite there. I’ve been throwing myself in a number of directions, hoping something sticks. It feels inauthentic to be casually re-posting articles I write for other places here, but at the same time I don’t feel like any of those places are a home base. Linkedin, the Odyssey, the Mighty, pinterest, facebook, twitter, stumbleupon – just the splattering of online personas.
Having so much time on my hands the past (going on) 7 months, I’ve become enormously interested in personal development. That doesn’t necessarily mean I’m just looking up stuff that affirms whatever views I have about myself. I’m exploring everything, challenging my own views – literally my laptop has become my classroom. I know it’s easy to judge the amount of time I spend on it, but right at the moment, I’m able to learn more here than anywhere else.
Politics, narcolepsy research, environmental matters, MBTI, the Enneagram, cognitive functions, personality disorders, recreation therapy (my own profession should probably be in here too, right?), technological advances in health care (and health care in general…), disability awareness and racial tensions, white privilege, feminist issues… the list goes on and on. I list it because I’m both impressed with myself but also a little judgmental because I’m not an expert in any of these areas… I know enough to discuss with someone who is more knowledgeable than me, but am not to where I can teach anyone, which I quickly learned not so long ago and felt I’d just ruined the whole thing.
Oh, and finding a job. Finally working on that as well, but nobody anywhere moves faster than cold syrup. The job is kind of like my golden ticket; getting that means I can move out, have a schedule and routine, meet and interact with people on a regular basis, and have some money to do more than desperately search for free events happening in my area or have my friends make me dinner at their houses.
Things aren’t moving fast enough. Not in the way when I was a teen and adults chided ‘don’t wish this time away!’ but in that I’m actually not doing enough (I’m also sick, again, but I was healthy for a good 10 days before that).
In an effort to ‘do more’, I thought it’d be a great idea to buy a domain name.
Why? What does this have to do with anything honestly? And what am I going to do with it? Candidly, I just had a feeling I should, and since the .blog domain is all shiny and new I was able to get something with my actual name and not have to turn it into some cryptic code because everything else was taken.
So hello elizabethjane.blog – I mean it has a nice ring to it doesn’t it? Currently I’ve no where to host my little piece of internet (because more money), but I’m fine with that. Having something that is literally mine means I’m now invested to some degree. Usually I make sure I’m *not* tied into something too far so I can just pitter around until the next thing comes along, but no more!
Seeing as I now write for The Mighty and The Odyssey in addition to this quiet corner of mine, I’ll probably be cross-sharing more. Hopefully it’s not seen as laziness; if I write something, I now have three disjointed arenas I’m considering, and I’d like to try and have all my original work at a home base of sorts. Right now, that’s not very organized, but it’ll improve. So, without further delay:
A quote I see floating around on Pinterest frequently is “what screws us up most in life is the picture in our head of how it is supposed to be.”
I had a specific idea of how my life should be six months out from graduation. At the time, it seemed pretty realistic; I accounted for some struggles, but also assumed there’d be some successes and left space for “come what may.”
For instance, my new home didn’t have to be anything fancy, though I really wanted a porch or balcony and a cozy corner where me and and a dog can cuddle up with a book on a rainy day. I probably still have ten “what the hell am I doing” moments a day at my job, but love the people I work with and am making enough to cover my loan payments and complain when I can’t do something because of said loan payments. When I get a little overtime, I treat myself to some riding lessons and a deposit in a piggy bank designated “world travel.” I’ve probably made some friends whose company I genuinely enjoy, though still likely feel lonely or a little lost sometimes (and have already downloaded and deleted Tinder at least twice); but when a cute boy takes me on an honest-to-goodness date, and I come home and tell the mutt puppy I adopted about how much fun I had, I am wholly and completely in the moment and ready for whatever comes next.
Start going too far and it’s easy to see how you can get lost in it. What do you do when it’s not how you pictured?
You’re hella confused, first off. Especially if you supposedly followed the steps to get to the picture. AP classes in high school? Check. Plenty of activities and sports? Check. Accepted at a good in-state university? Yep. Graduate after being involved in more things than you can keep track of, a full-time internship, and with some honors? Check check. Then you’re angry – you put in the work, where’s your prize? Why did this turn out so differently? They say to begin with the end in mind, and you’re sure you did that; like that one frame on your wall that just won’t stay straight, you’ve dutifully tweaked and tilted it almost every day back to where it should be, and should stay.
One day you come home to find the whole thing on the floor, glass shattered and picture ripped and punctured in places. Where the frame used to be are all the additional holes and knicks made in an attempt to get the damn thing to just. stay. straight.
I’m realizing that while I was so concerned about keeping this frame of “how it should be” straight, I never considered that I could move it somewhere else or change the picture itself. Why do I let myself be constrained to this one picture in this one place?
“There’s no time like the present.”
When was the last time you just thought about yourself in this very moment? How about this one? And now? Have you moved since three moments ago? Been in the presence of other people? Checked your phone? Felt some sunshine? Felt cold?
If you’ve read this far, you’ll never go back to the exact moment when you started reading this. I’m not in the same moment as when I first started writing this, and actually this has turned out very differently than what I was expecting. For several days I was determined to write exactly what I had in mind, and I made zero progress. Frustrated, angry, and ready to say screw it because what am I even trying to say?
Then I deleted over half of this and decided to just write. Funny what happens when you decide you don’t need to be anything. I know I’m not the only back living at home, or the only one who’s health has derailed more than one plan. I know I’m not the only one who misses the comfort and vibrancy of my college town, finding myself wistfully scrolling through this feed or that of all the people still there. I know I’m not the only one who wonders if they’re a failure for not getting that first job break in spite of being fully qualified and “doing everything you were supposed to.”
So, what do you do when it’s not how you pictured? You decide if you want to leave the mess as it is and complain about it, or if you’re going to take what you can, clean up the rest, and start making something new. I’m making something new; no idea what it’ll turn out to be, nor do I want to know right now. The important thing is starting.
I was here. Probably sweating, possibly tipsy, and definitely screaming with everyone else each time we (frequently) screwed up a play, handed our opponent a gentle first down, or left … Continue reading Three years ago today..
Once upon a time, I had a blog over on blogspot. I think I started this one just after I had began high school, and I’m now so glad I … Continue reading From the archives: Peanut
Doom and gloom seems to be the recent theme, so here is some sass that I wrote for my latest post on the Mighty:
How do you feel about disabilities? Because I have one.
Whether seeking employment or a date, if you have an illness, condition, or disability, there’s always the question of when you should “disclose” this information, or if you should at all. A quick Google search of the topic will summon thousands of hits trying to decipher this new art form. Among these results are people asking for help. Should you do this during the interview? After you’re hired? Later down the line? When it becomes a problem? Or with dating, what’s the time frame? Is it a third date topic? After you’re committed? On the first date? That seems too risky…
Advice ranges from the super-enlightening, “if you think it could help,” to, “Don’t. It’s only caused problems for me,” to the instruction manual in another language: “Well, if X, Y, Z has happened and A, B, C could happen, then maybe…”
I think you get the picture.
The point is, we shouldn’t have to deal with this pressure (example of someone ignoring this pressure [and promoting democracy!!] seen in the instagram to your right. Caption is more important than the selfie). Weighing whether a potential partner or position will be worth losing if you volunteer this information, or constantly analyzing situations and people to determine if, when, and how we “confess” this information is ridiculous. Because that’s what it’s turned into, a confession. While the ADA (Americans with Disabilities Act) has brought positive change to multiple areas of life, there is still work to be done.
What has happened so far in my experience? Well, I’ve realized I’m not the only one feeling the pressure. I have seen panic (or at least some moderate anxiety) in the eyes of someone interviewing me if I go anywhere near “accommodations” or “chronic illness.” On at least four separate occasions I’ve been cut off, told hurriedly “that’s something you’ll have to talk to HR about” or “OK, that’s good, that’s all we need to know!” The subject is quickly changed, and as I rejoin the conversation, I observe the person (or persons) opposite me slowly relax after averting certain crisis. As of yet, I still haven’t disclosed I have narcolepsy with cataplexy in an interview because I haven’t had the opportunity.*
*Side note: As far as I can tell, there’s been no ADA violations because 1) I don’t push the subject, 2) I get where they’re coming from and 3) typically, I’ve either ended up with the position or there’s an unrelated reason as to why the position won’t work for the company or myself.
This is wrong. People with disabilities won’t disclose because they don’t want to be discriminated against, and I think some employers avoid the topic like the plague in an interview because of possible legal repercussions if they don’t end up hiring this person. To me, narcolepsy is just another fact. It’s not necessarily something I want in bold on my resume, but due to its good-day/bad-day fluctuation while I figure out which concoction of treatment best appeases my particular set of symptoms, I want you to know I have narcolepsy so there’s a plan already in place.
We need another perspective change. The most recent trend has been the idea that people with disabilities are these magical creatures of strength and resilience here for inspiration, the proof “it could always be worse!”
My disability is “invisible,” so my experience is limited here. Imagine though, being someone in a wheelchair, with an amputation, or someone with Down syndrome, and being told the following on a possibly regular basis:
1. “You are so brave.” (not included: – “for being here, in a wheelchair. How do you do it?”)
2. “It must be so terrible; I can’t imagine.” (not included: – “life without your arm. At least I don’t have to deal with that…”)
3. “She can do that?!” (not included: – “this completely normal task, since ya know, she’s got Down syndrome and I can’t address her myself.”)
It would get real old, real quick.
What do I want? To go into an interview and discuss my qualifications, experience, etc., etc., and when the interviewer asks me for a bit more about myself or if I have questions, I can say “Well, Mr. Supervisor, one thing I like to note is I have narcolepsy, which just means I typically ask for a little more flexible schedule to allow me a couple naps during the day and to go to medical appointments as needed. This worked well in my last position, and I’d like to know what the company’s experience accommodating employees with disabilities is and if accommodations could be put in place prior to any start dates.” The supervisor, completely at ease, would be able to tell me the company has hired people with disabilities in the past and has a few “standard” accommodation plans already in place but that they always have a conversation with new employees before their first day.
Pipe dream? Having a go at those with an implicit bias or stereotype, asking them flat out how they feel about disabilities before any of this disclosure took place, with an honest answer from them. I don’t look like someone who would have a disability, so I relish the opportunity to try and challenge perceptions, even if it doesn’t seem to work. I know I’ve got a better-than-average resume, and that’s not just “better than average for someone with a disability” – I worked my ass off for it, like anybody else. My secret? I sometimes have had to go about getting my experiences in different ways. This, right here, would be my point. If I can accomplish the same quality, why does it matter if my, or anyone else’s methods, are different from “normal”?
I’ve already experimented to see what would happen in a real-world situation, just not in an interview (yet). I decided to test out how a stranger would react to the knowledge of my disability in the most neutral, welcoming, and non-judgmental forum I could think of: Tinder.
I can see the eye-roll emojis and “that actually sounds like a terrible idea” thoughts. But… Surprise! It went well. Better than expected. On separate occasions, several months apart, I told roughly four or five of my matches I have narcolepsy. Caveat: this is not a line-opener. Just like an interview, it would be after we’d at least formed some type of conversation. This isn’t the most important thing in my life or in this situation, so it doesn’t get to be the first thing I talk about.
Now, back to the guys.
Whether it was a “fun fact about me? I’ve got narcolepsy!” “one thing you should know is I’ve got a chronic illness, it just makes life more interesting,” or the time I actually did say, “So how do you feel about disabilities? Because I have one haha,” I was met each time with genuine curiosity, questions, and respect for throwing it out there, and not once did I regret telling someone. That last one actually resulted in meeting the person and subsequently going on several dates, but even the ones I didn’t meet were consistently polite (shocker) and interested in learning at least a little bit more, so I consider this a success and promising for future research.
The lesson? Don’t let anyone tell you what you should or shouldn’t hide about yourself. If the situation is appropriate, ask more people how they feel about disabilities, honestly, and challenge (but don’t force) their thinking with how amazing you are. It’s true, right now you still typically need to be tactful with this information and you may have to hold back. However, the more brazen people there are who bring this into standard conversation, the more likely it will start to become standard conversation. And the asshats who continue to ignore these efforts or say “so sorry, it just isn’t a good fit” (and you know there’s more to it), are truly not worth all of the amazing things you have to offer. Don’t settle in any area of your life just “because you have one.”
I have about 10 different drafts that I’ve tried flushing out over the past month.
Each time, I come back to the confusion in my life. Have you ever had one of those moments where, as time slows down and pauses around you, you’re watching what’s happening instead of experiencing it? And as you’re watching yourself, you already know that the person before this moment, their book, is finished. Not just a chapter, because that would imply a continuation of the same story. Although maybe it is, you can’t really tell because it doesn’t feel like you’re the author at the moment. You just know this is important, for better and for worse.
And then you’re back in yourself, you walk out of the moment, and continue on. I feel like this would be an understandable experience to have when I was diagnosed with narcolepsy, but this is different.
Am I being dramatic? Probably. Maybe. No? When you realize there are large gaps in your memories, and you find yourself desperately trying to remember details that prove something, but come up blank… You’re confused.
Worse, you can’t place names, or even general references. You can’t research or ask others’ opinions, because nobody else was there. I started a blog for writing practice, for fun, and it’s given me the opportunity to be a contributor for The Mighty, which has been empowering and something I’ve enjoyed after the two articles I’ve submitted so far.
For the past month though, all of my energy has focused on this. People write vague things about their struggles on the internet all the time, whether alluding to it or calling it outright for what it is. I could imagine why people would do it before, but now I understand it. You just need something to be outside of your head and a notebook. I can’t write about anything else until I do this, annoying as it is, because I know how much I’ve changed recently. My perspectives are different, my trust is certainly being held close at the moment, and I’m hyper-vigilant to seemingly everything (hello exhausting). I’m in flux about my values, my goals, my identity (guess this is a premature quarter-life crisis), trying to piece together my past to better understand the present, and mostly avoiding the future right now.
But, here’s what I’ve learned so far…
- I am so, so much stronger than I have ever given myself credit for.
- I am incredibly intelligent (and have undermined this my whole life).
- My ways of adapting to my circumstances has resulted in some residual problems I now have to deal with, but I don’t regret what helped me cope.
- My life events are the same, but my experience for so many of these events is in question. I’m still me, but my perception of myself is unsettled and changing, and I’ve got to spend time with and learn who this new perception is.
- There are still some really damn amazing people in my life, and I’m more thankful for them than ever.
I’ve said it before and I’ll say it again; if you would have asked me if I thought a, b, c, or d would be in my future 1 year, 2 years, 5 or 10 years ago, I would have said “nah.” Here I am, and here I go. And it feels so good to write that.
What do these two things have in common? First, my realization that narcolepsy had turned into this cold, lonely, and heavy weight attached to me. And second, there’s a … Continue reading Chronic illness and icebergs