Some sass about disability

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…”

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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.”

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Chronic illness and icebergs

What do these two things have in common?

And if you have said this, you don’t know what hypocretins are. #educateyoself
Accurate. For many, I’m sure.

 

First, my realization that narcolepsy had turned into this cold, lonely, and heavy weight attached to me. And second, there’s a whole lot I don’t want others to see in regards to how much I’m struggling with this darn thing. At my follow-up appointment with a new neurologist in February, I told him that while I had thought a regular routine and schedule would reduce my symptoms, I was moving in the opposite direction the farther I got in my internship. I was looking for help; I told him I want to be working, I want to be doing something I love, and I asked for more behavioral-type coping skills I could do, a change in medication, something. I just wanted to be better, because even at this point, I could see what I was doing would not be sustainable in the long term. What I got out of his response was that he wanted to help me, but I had to remember that narcolepsy is a lifelong condition and I essentially may be as good as I can get. Oh, and if I thought seeing a therapist would help, he would give me a referral to a therapist, if I found one for him.

The gravity of “chronic” suddenly hit me, and I left that appointment in a slow fog. Literally, because I was having to avoid any emotion and count my steps to keep myself moving to the car, and dragging this big ‘ol iceberg was not helping.

1, 2, 3, 4. 1, 2, 3, 4.

When my thoughts drifted from counting, I’d feel the familiar buckle and wobble in my knees. I took the elevator instead of the single flight of stairs, and the normally 3 minute walk from the check-out desk to my car took closer to 10. When I had finally made it into my car, something great happened: I broke down. I melted and I cried and cursed and hiccuped and wallowed in my self-pity for a good 20 minutes.

Why was this great?

I hadn’t been able to cry for months because the emotion that comes along with tears and puffy eyes was apparently too much for my cataplectic body to handle, and whenever I would come close, I’d wilt into “numbness” (cataplexy). Basically, I’ve got no emotion (or movement) for however long my body decides it needs. Might be 10 minutes, might be 2 hours. Either way, I give no shits about anybody or anything during this time, which one might think is good, but you’re just avoiding the problem, and so it keeps building under the surface. Each time I tried to address it, my body was like “nope. can’t handle. TIME OUT.” I’ve been building an iceberg, and maybe I chip off a chunk or warm up a minute amount when the sun is particularly strong, but I’m still sitting in the arctic. Each time I couldn’t deal with what was happening to me, the submerged part got a little bigger and a lot heavier; all of these emotions to deal with and my own condition was suppressing them.

Now, bear with me, because I love me some metaphors and also, I learned a lot about icebergs during this – takeaway: icebergs are super interesting.

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THIS IS SO COOL and there’s more

So, when you have turned into an iceberg, how does one expose the 90% of you chilling underwater?

The answer is that you don’t. Well, technically you could if you can flip the iceberg over. However, I would not suggest that seeing as 1) it takes a whole lot of work 2) it can release the same amount of energy as an atomic bomb (what the hell?) and 3) you’re still going to end up with a majority of that thing underwater.

For a long time though, that’s what I’ve been trying to do. Flip the iceberg. I thought that if I could just try a little harder, accomplish one more thing, or go just a little longer acting like I wasn’t as tired as I felt, I could flip this and get myself back.

It’s not going to work like that for me though. I don’t need to flip the iceberg, I need to not be an iceberg. Duh. You know what an iceberg normally does? It just goes along its merry way, floating through the ocean, soaking up some sun, riding the waves, and generally moving toward warmer waters. And as it does, it gets bopped around, loses a piece here or there, and melts until it’s a harmless nugget called a growler, and eventually it’ll completely melt. It’s still h2o, no matter what it looks like, so to me, melting is fine in this situation. (Note: Climate change & global warming is something I am not ok with – giant glaciers melting and falling into the ocean and such, not cool. Tiny hunk of ice just doing it’s thing, ok.)

In English, what I’m saying is that I’m done fighting and building my big, cold narcolepsy iceberg. Acting like I’m ok and getting better when I’m not (yet) is only more draining for me in the long-term.

Tropical paradise with turtles:
Probably won’t end up in Hawaii, but go big or go home, eh?

I mean, I’m trying to undo over 2 years of chronic sleep deprivation, so that requires some patience. But instead of putting up the facade I’ve perfected, I’m finally allowing myself to just be “sick.” Of course, there are instances where this isn’t feasible, but for the most part, I’ll feel what I feel. It’s not going to be easy, because I am normally a very active and on-the-go kinda gal, but the truth is that I am a whole lot of tired, a whole lot of time. I’m going to try and think of this time like I’m stopping to smell the roses (or, take a nap at the roses, whatever), see what opportunities I can find with my slow journey, and trust that the current is moving me toward warmer waters.

Narcolepsy is everything I’m not

Since I’ve been diagnosed with narcolepsy, I’ve not taken the time to fully process it. Sure, I experience it everyday. I live in a constant state of “I’m tired,” without knowing what that really means. Is my tired really more tired than your tired? Aren’t we both as tired as we feel? I shouldn’t be able to criticize someone and say “You don’t know what it’s like, I have it so much worse than you,” because I don’t know what you are going through and dealing with. Do I get a pass? Or am I whining? Should I “just do it?” So many people do – so many people stronger than I.

Chronic illness. Yep, this is me today. I meant well today, but nope. Done. Bedtime at 5:40 pm.:
So fibro & narcolepsy have some things in common.

It’s easy to fall down a self-deprecating hole. Narcolepsy makes me feel like I am not enough. I’ve been down that road before – depression sucks too. And I can’t say one is worse than the other, because at the time, that depression (not diagnosed, but I know whatever I was, it wasn’t well) was rock bottom. I could sit and dwell on the negative aspects of myself for hours at a time, staying up late into the night with the neon glow of the internet as my companion, thinking all the time that “it could be so much worse, why am I not able to see that and just be happy?”

This is different – maybe worse, maybe not, but I know how hard it was to build myself back up from a place where I was convinced of how little I mattered to anyone. Being a chronic people-pleaser, my logic was already flawed. I did everything in my power to make sure I was not disliked, and yet I wondered if it would be better to be hated or disliked by people, because it would prove that I existed. Obviously there’s a disconnect here, and I have no idea why my mind was working as it was. Regardless, I didn’t hear gossip about myself, good or bad, because I was trapped in a vicious circle of trying to be so painfully average.

And now, in a twist of irony, I finally reached a place where I could fully accept, be, and share myself, but now, so often, I cannot physically do so. I finally embraced being loud, bubbly, quirky, sarcastic, and a secret bad-ass, but now I literally crumple to the floor. Coming home each evening from my internship this spring, I’d manage to get the key out of my Ford’s ignition and then fall forward onto the wheel for several minutes in relief, catching my breath from the physical concentration and exertion required to drive home. Climbing up the stairs just inside the entryway, it wasn’t uncommon for me to sit down halfway up, because I didn’t have the energy to go up the whole flight at once. I walk with a consistent limp, my knees buckling, head drooping, dropping things this way and that – but only when I’m alone (which I still don’t understand). My mind says, no one wants to see me sprawled out on the floor – it’s attention seeking. No on wants to deal with me slumped halfway on my bed; why could I just not get on the damn bed? No one wants to see me just sitting on the floor in the middle of the bathroom because it’s easier to conserve that standing energy for later and do my makeup sitting down. I don’t want people to see me clawing my arms and wrists to stay awake, or staring listlessly at a wall for an hour while I’m paralyzed in another awkward position.

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And yet, this is where I’m at.

Problem is, I don’t *look* sick. I’m the tiny one on the left hopping like a peppy cheerleader, after running a 5k. How does one go from that to taking multiple two hour naps in a day? I’m an open, transparent person, and having an invisible illness makes me feel like a fraud. I’m smart, articulate, and inquisitive – with narcolepsy, whether I can blame it or not, I’ll stop mid-sentence while talking with someone, furrow my brow, and then concede defeat with a “what was I saying?” or “what did you just ask me?” Or I’ll find myself in a situation where two years ago, I would have struck up conversation with a stranger just because they looked interesting, and instead I can feel my body grow heavy and my mind slowing down, forcing me to put full concentrate on keeping upright, walking straight, or picking something up. And the moment passes.

Writing, reading, running, playing with my energetic young cousins and spending time with the rest of my family; all things I love dearly, and yet have become overwhelming to just begin as I try to figure out if I have the energy (which also requires effort it seems). Being spontaneous and going out for drinks or a random trip have been replaced by a need to stick to a consistent bedtime if I want to maximize my chances for a relatively decent next day. This could soon change. I’m hopeful, which is why I said screw the bedtime, I’m going to write. If it does change, I’ll need more comparisons to see if there’s a difference. I’ll probably re-read this and find multiple errors, but finally, I’m writing something for eyes other than my own. While narcolepsy may be everything I’m not and usually isolates me, I’m going to let this remind me that it doesn’t have to be everything I am.