Friday, September 2, 2016

a cordial invitation to fight me

I'm having trouble believing that what I'm about to tell you is an Actual Real Thing that happened to me.  Maybe I was transported into some sort of parallel Twilight Zone-esque universe.  Maybe this is an elaborate plot designed to test my ability to handle frustration.  Jury's still out.

I'm mad.  Really mad.  The kind of mad that makes your hands shake and your thoughts race.  This experience might win the award for "most ridiculously incomprehensible thing that has every happened to me."

Here's the deal: Just like last year, Steve has been living in the lounge on my hall.  He's tucked away in the corner inconspicuously.  Our lounge is pretty big and people are hardly ever in it.  I didn't imagine him causing any problems.  My imagination must be pretty limited, however, because someone actually complained about his presence.

I'm gonna let that sink in for a moment.  Someone went to Residence Life to complain about the existence of my mobility aid.

The only identifying information I have about this someone is that he's male and lives on Fourth Belk.  And also that the mere presence of a marker of disability so upsets him that he has to complain to administration about it.

Firstly, I'm sorry that the existence of my mobility aid makes you uncomfortable, but I need to keep him somewhere.  You might not have had an experience with a person who uses a mobility aid before coming to this campus. This situation might be new and weird for you.   But my ability to navigate campus probably trumps your discomfort with the having to see a marker of disability.

And, like so many other interactions, that's the heart of this matter.  Disability is unsightly.  It's unsettling.  It needs to be kept out of the public eye.

Time for a history lesson, folks!  In various cities across the country, it was at one time illegal for people with disabilities to appear in public.  These "Ugly Laws" prevented anyone whose appearance was deemed unseemly (read: disabled people) from being seen.  In some cities, these laws remained in existence until the 1970s.  Now, thanks to the ADA, you can no longer legislate that.  But legislation doesn't always change socialization.

Trust me, I am well aware that my presence causes discomfort.  I've developed a pretty thick skin in this regard, but every time I use my mobility aid, I'm aware that my embodiment is unsettling to some people.  Imagine going around with that in the back of your head all the time.  Now imagine it being shoved directly in your face.  Imagine someone being so bothered by a reminder of your disability that he needs to get it out of his sight.

Here are the specifics, as I understand them:  At the first meeting for the men on the hall, a student brought up his problem with the existence of my scooter.  The RA told him he was going to have to deal with it.  This guy, unsatisfied with that answer, took it to the higher ups.  But here's the kicker - they listened to him.

Instead of supporting my right to exist in public and telling this guy to take his ableism and shove it, Residence Life mentioned the complaint to me.  If someone had complained about a girl on the hall wearing a hijab, or sharing a bathroom with a gay student, I wonder if RLO would have responded the same way.  I seriously doubt it.  I love Davidson, and I've found most people here (including RLO) to be friendly, warm, and accommodating in every aspect of my life. But this notion of disability being unsightly, this notion that it's my job to accommodate other people's discomfort with my existence, is so deeply engrained into our society that RLO viewed his complaint as valid enough to raise with me.

Because this guy is made uncomfortable by my disability, he gets to choose where and how my mobility aid and I exist.  He gets to remind me that my disability is an unwanted intrusion on people's daily lives, and that I have to do everything in my power to mitigate that.

Ultimately, I did move Steve to the lounge on the first floor because of the potential for elevator issues.  This move was definitely the best in terms of my own ease of access.  I want to make that clear - I moved him after some discussion and deliberation because it was what would be best for my own mobility.  But while I didn't do it because of his complaint, he still got what he wanted.  As petty as it is, I would've loved to have kept Steve in the lounge just to spite him.

So here's your invitation: let me know who you are and let's have a chat (contrary to the title of this post, I'm not actually interested in a fight.  Anyone who's read my blog knows that I just like to give things silly titles).  I've laid out my argument, and I'll listen to yours.  I'm interested to hear your take on things.  Maybe we can see each other's sides, and meet somewhere in the middle.  You're not obligated to come talk to me, of course, but perhaps we might get something valuable out of learning about experiences different than our own.


Friday, July 8, 2016

f**k you, you can't be magneto

Three weeks ago, Charlotte had its biggest annual comic book convention, HeroesCon, and being the true nerd that I am, I simply had to attend.  And being the nerd who never really outgrew dress-up or arts and crafts, I also had to attend in costume.  This quirky hobby of dressing up as a pop culture character and wandering around a convention is known as cosplay, and it's very silly and very fun.  Some people take it extremely seriously and build entire Iron Man suits with lights and moving parts and all that.  It's crazy.  You should Google it.

Seeing as Steve the scooter is all decked out in Captain America stuff, I had to tie my costumes into that general theme.  Friday I wore a costume I made from scratch that was a relatively obscure reference to the first Cap movie.  It was extremely simple, but I still nearly tore my hair out trying to make it, so I was proud.  Saturday I was Peggy Carter, the love interest of the first Cap film and one of my all-time favorite characters.  She's a complete badass who doesn't have any powers but still manages to take down the bad guys without smudging her perfect red lipstick.  She got her own TV show that ran for two seasons and it was pretty fantastic.  Although she doesn't necessarily have a superhero costume, I managed to piece together the most iconic outfit from the show.

Overall, the convention was a delight.  Most everyone there - the artists, vendors, con-goers, staff, writers, etc - was so friendly and I had a great time meeting people and chatting with them about comic book stuff.  It's really easy to start conversations when you have an instant common interest.  I was worried that people were going to be weird about the "young woman with mobility aid" thing, but they really weren't.  People treated me like a regular old nerd in costume.  They were friendly and remarkably not-weird (I think when you're operating in a world where it's normal for people to spend months crafting exact replicas of comic book costumes, there's very little to be weird about).  Lots of people recognized my Peggy costume, and I was even asked to pose for several pictures, which is common in cosplay.  One of my favorite comic book writers actually complimented me on incorporating my scooter into my cosplay so like, you know, no biggie. (No but seriously that was an awesome moment)

I'm gonna take this moment to get up on my soapbox on how awesome mobility aids are (again).  Last year I went to HeroesCon and had to take breaks every ten minutes to sit down, and still didn't last much longer than an hour.  By the end I was clinging to my siblings for balance and spent the next several days exhausted and ill.  This year I could go two days in a row and stay as long as I liked, and had very little recovery afterwards.  So yeah, mobility aids rock.  They're not confining or limiting.  They open up a whole world of possibilities.

So, for the overwhelming most part, the con was awesome.  But, of course, there were a couple obnoxious moments.  I knew, going into it, that at an event this size, I was bound to get a few stupid comments.  I'm going to tell you about the one that bothered me the most.

I'm wandering down the aisles with two of my friends, my little sister, and a friend of hers, minding my own business.  And from across the aisle, a grown-ass man, a vendor who's selling stuff at the con, a complete stranger, a man I have not so much as made eye-contact with, hollers "I'm with you on the whole Agent Carter thing up until the electric wheelchair.  She just wouldn't have that," and then laughs.

I literally did a double take.  Did someone seriously just say that to me?  Are people honestly that rude?  I saw red for a brief moment, but, exercising truly superheroic self-restraint, I said nothing to him and kept going.  I just kept saying "Did he really just say that to me?"  and "God, I'm so mad!  I'm just so mad!" over and over again to my friends.

I was too wrapped up in my rage to realize that one of my friends, Madison, wasn't with the group.  A word about Madison - she's my oldest and dearest friend.  She's practically family.  She would do anything for me, and vice versa.  She has no real interest in comic books, but volunteered to come to this wacky event because she's simply a really nice person.  She's also going into her senior year at the Air Force Academy, and for as sweet and lovely as she is around me, she's also a stone-cold badass.  So when I realized she wasn't with the group, I knew exactly where she was (despite expressly telling her before we arrived to let these sorts of stupid comments go).

As I had expected, she returned to the group, and said the guy wanted her to tell me that he was "really sorry."  I demanded to know what she said to him to elicit this response, but I couldn't get a straight answer.  All I know is he feels really bad about it now.  And I did feel a little better knowing that justice had been served and he didn't get away with being a douche.

I've spent a lot of time trying to unpack this comment and I just... don't get it.  On several levels.  For one, who on earth is actually that rude?  Do you also go up to little kids in wheelchairs and tell them they can't be Spider-Man?  What was even the purpose of that comment?  Do you just like making fun of people's disabilities?  What is wrong with you?

Or are you somehow suggesting that because I can't physically do the same things as the character I'm dressed up as, I shouldn't be dressed up?  Fine, okay, then we better demand that every Wonder Woman fly.  I guess I'll just go chop a hand off of a Deadpool cosplayer, because we should expect him to be able to grow it back.  Oh, you can't literally manipulate metal with your mind?  Well fuck you, you can't be Magneto.  Do you see how little sense this is making?

Or maybe you don't want to take it that far, but you're just saying disabled people should only dress up as disabled characters.  By that logic, non-disabled people should only dress up as non-disabled characters too, right?  So the Daredevil I saw on Friday, who probably wasn't actually blind, is breaking the rules.

Do you realize that none of these arguments make any sense whatsoever?  So here's a suggestion - stop policing other people's self-expression and hobbies.  And stop being rude.  I wish I could go into a more complex analysis than that, but this comment wasn't said with good intentions or because of innocent ignorance.  It was just a guy being a dick.  So the simple answer is to stop doing that.

My only thoughtful reflection from this interaction is that it's very easy to distance ourselves from others, especially people who seem different.  You may think you have nothing in common with a young woman dressed up in a silly costume on a mobility scooter, and that makes it very easy to be rude.  But we do actually have a great deal in common.  We're both human beings, and we both want to be treated with respect, kindness and dignity.  Try to see past our differences to our common humanity.  I get it - it's very easy to forget that other people have feelings, and that we wield enormous power over those feelings.  But as Spider-Man taught us all, with great power comes great responsibility.


Monday, April 25, 2016


If you don't have anything nice to say, don't say anything at all.  It's an age-old saying that I've found to be pretty good advice.  I'm not saying I always follow it (hey, nobody's perfect), but I at least try to show a little restraint when the urge to snark sets in.  This general philosophy is why, when I received a message last night with unsolicited medical advice, I forced myself not to respond.

I posted something on Facebook and Instagram last night that was tangentially related to chronic illness.  Mostly, it was an examination of my complicated relationship with makeup (Quick summary of the post: Pros - it makes me feel cute.  Cons - sometimes I can't feel cute without it), but once you throw disability into the mix, however incidentally, people latch onto it.  Of course, it didn't take long before someone had to make a comment that elicited a long-suffering sigh.

I'm not going to name names, and I'm going to try to give as little identifying information as possible, because the purpose of the blog is never to call people out.  But an acquaintance, who I haven't talked to in over a year, felt the need to slide into my DMs (as the kids say) and give me some unsolicited medical advice.  Even better, the unsolicited medical advice was essentially "Have you tried changing your diet???"

The short answer is "Yes, now please leave me alone."  The long answer is "You've probably never heard of my illness, but you're still probably going to make a lot of recommendations about dietary changes, many of which will be directly contrary to advice given to me by actual, educated medical professionals.  For about a year, wheat gave me bad stomach pains, so I gave it up.  I already eat a vegetarian diet.  I drink 4-5 liters of water a day.  So I'm doing pretty well. But you're probably going to tell me to start juicing or some such nonsense.  Drinking a large glass of juice would, in fact, be very inadvisable for me because of my reactive hypoglycemia.  A glass of juice in the morning means my blood sugar will be about 40 in a couple of hours, which is a recipe for fainting.  You'll also probably tell me to cut out salt.  Surprise!  POTS patients are actually recommended to consume as much sodium as possible in an attempt to retain water (yes, this essentially means my goal is always to be bloated, which as a 19 year old girl, is annoying).   That cup of instant noodles I just ate actually benefits my health. You'll probably recommend ways to lower my blood pressure, which would only serve to exacerbate my symptoms.  I'm actually on medications to raise my blood pressure.  So, my buddy, my pal, before you try to sell me some random supplement, or tell me dairy is the root of all evil, I highly recommend you actually be educated on my specific dietary needs.  If not, please mind your own business."

I know that this woman probably meant well.  She probably thought she had something helpful to offer.  But the presumptuousness it takes to tell me - who's been living with a chronic illness for over 3 years - that you - who probably hasn't heard of said illness - know more than I do about my health is truly staggering.  I've done extensive research.  I've inhabited this body for 19 years.  I've consulted with experts in the field.  Do you really think you're going to find the cure to all that ails me if I haven't already?  If all it took was some kale, don't you think I'd have done that by now?

Look, I've got nothing against complementary medicine.  Like I said earlier, I do modify my diet.  I eat a low carb to stabilize my blood sugar (RIP waffles).  I limit my sweet potato french fry intake.  I do my best to eat fruits and vegetables and protein.  I've done acupuncture, and actually found it extremely helpful; it was the only treatment that fixed my insomnia.  So I'm all about herbs and supplements and whatnot.  The issue here is not nutrition as treatment, it's someone completely uneducated about my needs trying to tell me what to do with my body.  It's suggesting that what I'm currently doing to manage my health somehow isn't enough.

Additionally, as much as the current nutrition-crazed internet wants you to believe, not all (or even most) chronic illnesses are caused by diet.  Sure, dietary changes can be helpful, but no amount of quinoa is going to cure me.  I eat pretty darn healthy, and I'm still pretty darn sick.  Yes, I indulge in the occasional mozzarella stick, but I'm not eating so unhealthfully that it's wreaking havoc on my entire autonomic nervous system.  To suggest that I am blames me for my illness.  If only I took better care of myself, I wouldn't be in this mess!  I could fix it all if only I had the dedication to change my diet!

Once I got the message, I took a screen shot and sent it to my mom and my best friend.  And they were both as frustrated as I.  Because the amount of uneducated, unhelpful comments you receive increases exponentially once you reveal you have a chronic illness.  Here are some personal favorites: "But you don't look sick!"  "You're too young/pretty to be sick!"  "You take too many medications!"  "It's probably just stress!"  "I get tired, too!"  "My [insert obscure relative here] has that and she runs marathons!"  "At least it's not cancer!" And of course, my personal favorite "Have you tried changing your diet?!"

These comments are so ubiquitous that someone far more clever than I made them into a bingo game.  There's an irritating comment on every space, and you get to fill it in once you've received the comment.  So at least, despite how incredibly irritating these exchanges are, you can find a way to laugh about it.  I'm sure it'll take just a little more time on social media before I get to yell "Bingo!"


Thursday, February 4, 2016

wikipedia ruined romance

Warning that I totally spoil Me Before You in this post.

Caveat to the warning: You don't want to go see Me Before You, so I might as well spoil it for you.

Let's proceed.

I am a total sucker for romances.  Love songs, love stories, romcoms, all of it.  I totally fit the English major stereotype of going into cardiac arrest when Mr. Darcy does that whole "I love you most ardently" bit in Pride and Prejudice (And in the movie when they're standing in the rain???? It's too much for me to handle).  So I was really excited to see that there's a new, highly anticipated romance movie coming out.  With two actors I really like!  Can life get any better?

Well yes, yes it can!  I watched the trailer for this movie, Me Before You, and... the main love interest has a spinal cord injury!!!  Here's a guy portrayed as super hot and romantically desirable and charming and he uses a wheelchair! He requires a personal assistant!  He calls out people on their ableism!  There's an adorable shot of the couple dancing with his wheelchair!  I was over the moon about the potential for fantastic disability representation.  More disabled love interests 2k16!

However, the entire time I was watching the trailer, a tiny, persistent voice at the back of my head was saying "This is too good to be true."  To which I responded "Just shut up and feel the warm fuzzies!"  But the voice would not be quiet.

"Okay," I said to this voice. "I'll prove it to you.  This movie is based on a book, so we're going to look up the plot of the book and you'll see how much great work this movie is going to do for disability."

So I looked up the plot on Wikipedia.  And I was struck with the strong urge to slam my head against the wall.

So here's the deal with this Me Before You business:  Fantastically Rich Guy is injured in an accident. Fantastically Rich Guy is paralyzed.  Fantastically Rich Guy attempts suicide.  Fantastically Rich Guy survives, but decides he's flying to Switzerland or something for an assisted suicide in six months.  Along comes Awkward Girl.  Awkward Girl becomes Fantastically Rich Guy's personal assistant.  They fall in love and are extremely happy together.  Fantastically Rich Guy decides to go through with the suicide anyway, despite expressing that the time he's spent with Awkward Girl has been the happiest of his life.  Awkward Girl is left a large sum of money.  The end.

So what we're saying here is that people with disabilities want to die.  Disability is a fate worth than death.  Disabled lives aren't worth living.  Even if someone falls madly in love and is extremely happy, none of that matters in the face of the unbearable, soul-crushing misery of having a disability.

I'm sorry, come again?  Because last I checked, none of that is true.  I don't mean to ignore or romanticize pain and suffering.  An hour or so ago I was too tired to change into my pajamas so I just sat on my bed, immobile.  And that's extremely unpleasant.  I miss being able to go to concerts, because I'm no longer able to stand through one.  I miss being able to spend all day out in the heat at the beach.  I miss hot baths.  I miss the ability to be relatively carefree and spontaneous.  I miss a lot of things.  But none of that overshadows how fantastic my life is.  Yeah, I'm dealing with some shit.  We all are.  But I've laughed today.  I've discussed literature.  I've pet a dog.  I've eaten a doughnut.  I've spent time with my friends.  I've scooped a spoonful of peanut butter from an untouched jar.  My life is so full of joy, and it only presents the possibility for more.  I might fall in love or find a new favorite song or adopt a kitten.  None of that is diminished by having a disability.  Is being sick sometimes unpleasant?  Yes.  Is it occasionally pretty awful?  Sure.  But my life is still worth living.

This widely marketed mass media representation that had so much potential to advance the depiction of disability only serves to reinforce one of the most dangerous misconceptions about disability - that it's a fate worse than death.  People argue for selective infanticide, for killing disabled babies "for their own good."  And this movie seems to agree with them. I'm not talking about the right to die with dignity when you have a terminal illness and would rather end your life on your own terms than suffer for another week or two.  I'm talking about people who have the potential for long, fulfilling lives but have a disability or chronic health condition and are dealing with depression.  Because that population makes up the majority of assisted suicides.  Maybe people wouldn't want to die upon becoming sick or disabled if they weren't constantly told that they should.  I mean, Fantastically Rich Guy falls in love! He straight up says the past few months have been the happiest of his life!  Why on earth would anyone in that position want to die?  He probably needs some counseling and some guidance, because what he's going through must be very difficult, but why should he want to die?

Please, do not support this movie.  Do not support the idea that it's better to die than be disabled.  Go watch Pride and Prejudice for your romance fix, but don't give money to creators who believe that suicide is the appropriate response to disability.


(I realize this post ended up having nothing to do with me personally as a student, but it's going on the blog anyway)

Monday, January 4, 2016

it is very easy to make my day

Hello again! I hope you all had a great holiday season! I haven't been active these past few weeks because it's winter break and that has mostly involved sleeping for twelve hours a day and the occasional trip to Barnes and Noble, so there hasn't been much to report.  However, the semester is fast approaching, so I'm getting back into the world of academia and resultantly, being a student with a disability.  Today I have a story of someone being extremely awesome in a disability-related interaction, which is a nice change of pace.

Before the start of the semester, I make a point of emailing all of my professors about my chronic illness.  You know, the "Hello, I am sick.  If I am not in class one day, please do not hate me" type deal.  I think I mentioned this in an earlier post.  What I didn't mention, however, was how professors have responded to it.  First semester I got a range of replies.   One of my professors was familiar with POTS and was very understanding, telling me she knew that it could be really unpredictable.  She also asked if she should call 911 if I have an onset of symptoms in class, to which I essentially replied "Please please do NOT do that."  Two other professors were also very understanding.  One asked if I wanted to Skype into class if I wasn't well enough to go and suggested alternate ways of making up participation credit if I needed it including (if I'm remembering correctly) keeping a blog.  She also added that she was excited about the perspective my experiences would bring to class.  And then my final professor responded with one line that basically said "yeah, okay, thanks for the heads up."  I mean, I spent hours perfecting this email.  It's the equivalent of sending a deeply personal, extremely long, heartfelt text and getting back "K." (You know you've been there)

As a result, I was a little nervous about this batch of emails.  I worry that professors are going to think I'm seeking attention/special treatment or am not going to work hard in class.  There's the risk that they'll respond along the lines of "Okay, great, not my problem.  Figure this stuff out on your own," which, while technically illegal, is a possibility.  I mean, I'm not afraid to challenge authority and I have a strong sense of justice and I'm essentially 5'3" of righteous fury and determination, so I'll fight them on it, but that's not how you want to start out your relationship with a professor.

So far, I've only received one response.  And let me tell you, it was one of the kindest and most understanding responses I could've imagined.  This professor is teaching a Modern Jewish Literature class in which I'm currently enrolled, and I already think he's pretty fantastic.  He thanked me for letting him know and providing such a clear description of my situation (thank you!  I worked my ass off making that email as clear and concise as possible!).  He assured me he knew where I was coming from with the need for flexibility.  He told me that he is willing to work with me and that my health is more important than the class.  He encouraged me to reach out if I need anything over the course of the semester.  It was a really, really nice email and pretty much made my day.  I giddily showed my mom the email and read over it several times.

You're probably sitting there reading this going "Okay...? So you got an email and your professor was understanding about something he's legally obligated to be understanding about...? That's a big deal?"  And the short answer is: Yes!  First of all, this professor really did go above and beyond to assure me that he was willing to work with my circumstances during the semester, so it wasn't exactly the bare minimum.  But the larger point is, yes, doing the bare minimum - appearing willing to make accommodations and just not being a dick - is enough to make my day.  Mostly because it doesn't happen incredibly frequently.  What I'm trying to say is, accommodating my disability is not hard.  Be flexible.  That's really all that takes.  Better yet, be flexible without acting like it's an incredible burden and I'm being unreasonable.  You will stand out as an Excellent Disability Ally.

I've had several instances where I was absolutely floored by my people accommodating my needs.  Most noticeably was having friends bring me dinner one night during midterms.  I was having a rough health week and had a ton of work.  By 6pm every day I didn't have the energy to get dinner, so I just wasn't eating much that week.  And I definitely was not going to ask someone to get food for me, because I'm proud and stubborn and don't want to be a burden.  However, two friends discovered my lack of eating and basically went "???????? Why didn't you say something??????" and brought me back pasta from Commons that night.  I was so touched.  (Also no longer hungry, so it was an overall good experience)  And yeah, is bringing back some food from the dining hall a huge imposition?  No.  But minor things like that make a huge impact.

This doesn't just apply to disability.  Being kind costs exactly $0.00.  Maybe don't yell at the server when the kitchen's backed up and you have to wait a little for your food.  Maybe let that guy into traffic.  Maybe smile at someone.  And maybe respond with alacrity to a request for accommodations.  It may not be a big deal to you, but it's a big deal to someone else.


Monday, December 7, 2015

in which i ruin the day of a poor, unsuspecting nurse

I thought I had written my last post for the semester, but I'm back because I had a funny and awkward interaction at the CVS on Thursday and it seemed blog-worthy.

I went to the Minute Clinic because I've had a respiratory infection for the past two and a half weeks and despite a pneumonia vaccine, two antibiotics, and twelve days of Prednisone, my left lung has been making a persistent creaking noise and I have a really attractive wet, juicy cough.  With severe asthma, respiratory infections usually cause a fuss, so when I sent a casual text to my mom about my creaky lung, she sent me to the Minute Clinic.

Now, for someone with as complicated a medical history as I have, places like the Minute Clinic or ER or urgent care are not ideal locations for medical attention.  I'm not the run-of-the-mill patient, so doctors who don't know me don't really know what to do with me.  This usually results in a - having them doubt my history or b - having them get really, really concerned.

So I settle on the exam table and the nurse, a small, Southern woman, goes to take my blood pressure.  My blood vessels are on extremely good behavior today, and it's a startling 105/70.  She asks if that's a normal blood pressure for me and I say that it's actually a little higher than usual.  And she's like "??? higher ???"  And I say yep, it's usually more like 90/60, and that I've got a heart condition that gives me hypotension.  And she's like "okay...?" which really means "wtf is wrong with this person?"

We move on, and I rattle off my list of a dozen prescription medications, a list that I've recited more times than I can count.  She confirms everything on the computer.  Then she asks me about medication allergies.  So I explain that I'm allergic to a certain migraine medication, I can't take sulfas, and I really shouldn't take any medications metabolized along the 2D6 pathway because I'm a slow metabolizer.  At which point she looks at me with an expression that can be roughly translated to "????"

I explain that 2D6 is a metabolic pathway for medications and that because of my slow metabolizing, the medication doesn't clear my system quickly enough and I essentially overdose.  I smile and tell her that one beta blocker brought my heart rate down to 30 bpm and landed me in the ER because it was a 2D6 medication.  And then I laugh in an "isn't it funny how my body's a train wreck?" sort of way.  And she pauses and goes "I don't think I even have a way of inputing that into the system..."  Which I say is fine, because I know how to google and figure out whether a medication is safe for me.  I've pretty much gotten doctors appointments down to a science by now.

Then we move on and she asks me about my diagnoses, which is always a fun conversation to have with a new healthcare provider.  If you thought twelve medications was something, just wait until you hear all the rare conditions I have to take them for!

So I go down another familiar list, this one of severe asthma, Ehlers-Danlos syndrome, porphyria, POTS, GERD, and reactive hypoglycemia.  I have to explain what porphyria is and she stops and looks at me with another "???" expression and goes "How did this all get diagnosed?  Because that's a lot of rare conditions for one person."

At this point, I can tell that I'm freaking her out because I am a medical mess.  So I try to alleviate the tension and smile and say "I know, I kinda lost the genetic lottery, didn't I?"  She remains serious.  Then I rattle off when and where everything got diagnosed and by which specialist.  Down to a science, remember?  And then she goes "oh."

She listens to my lung, which is putting on quite a show of creaking and groaning.  And she steps back with a furrowed brow and says that she definitely hears what I'm describing, but she doesn't want to jump the gun and give me another course of antibiotics but that I need to see someone in the next 24 hours.  I tell her that I'll try to get in with my asthma specialist, and she tells me if I can't, that I need to go to the ER, which is always a comforting thing to hear.

She sits back down at the computer to finalize some forms.  And then she stops typing and sighs and sounds very distraught as she says "But you're only 19."

And I'm like "...? yep."

And she says "But you're dealing with so many chronic conditions that other people your age aren't."

So I say something about how it's okay because I think it's helped make me into who I am so I'm really good with it, because what else am I supposed to say to that?

And you can feel the pity rolling off of her in waves as she goes "And you're still trying to look on the bright side."

I scoot on out of the Minute Clinic with what I think is a funny but really uncomfortable story. I feel a little bad, because I upset this nurse with the whole "Hello, I am young but also pretty sick" thing.  But at the same time I'm stuck between rolling my eyes and laughing because the pity was almost overwhelming.

I've talked a fair amount on here about how I happen to be sick, but that doesn't preclude me from having a really awesome life.  And there's something uncomfortable about having someone do the whole "You poor, sick, little thing" spiel.  Being pitied is just weird.  I don't want to be the object of pity.  I don't want people feeling bad for me.

I want to take this time to distinguish between pity and compassion.  Because I live a life that's dependent upon compassion.  I know this.  I need parents who care enough to get me the medical attention I need and pay endless bills.  I need doctors who care enough to treat me.  I need friends who care enough to do things like walk me home when I'm really dizzy.  I rely on the people in my life being compassionate enough to meet my needs.  But that's very, very different from pity.

This difference can be hard to see sometimes, because even the dictionary definitions of compassion and pity are all tangled up.  But pity carries with it a lot of condescension, the whole "You poor thing... your life is so terrible... I look down on your awful circumstances and feel sorry for you..." thing.  Compassion is more "You have needs, and because you are a human being and I value other human beings, I am going to do my best to meet those needs and care for you."  It's the difference between being viewed as a person with a chronic illness versus a person whose life is consumed and defined by chronic illness.  It's the difference between thinking a life with chronic illness can still be filled with joy and that my illness doesn't preclude happiness or success and thinking the opposite.  Does that make sense?

Please, chronically ill people don't want to be pitied.  We don't want people to feel sorry for us.  It's weird and uncomfortable.  We're not miserable, sick things.  We're generally pretty okay, sick things.  I'm not saying you shouldn't care or want to help someone with a chronic illness, because that's really kind and great and all that.  Just try to leave the pity behind.


Wednesday, December 2, 2015

local student nears end of first semester, still hasn't died

The semester is drawing to a close, which is pretty wild, because a - I survived! and b - I'm almost an eighth of the way done with my college education!  Not to get too sentimental here, but it's been an amazing semester.  I've learned new ways of looking at the world and thinking about the past and present, I've made fantastic friends, I've discovered new things I'm passionate about (aka disability studies), I've read so many great new books, and I've had an incredible amount of fun.  And I'm pretty surprised I've (almost) come out on the other end with minimal casualties.

Normally my posts are geared at a non-disabled audience, but today I'm talking to all my chronically ill college pals, whoever you may be.  Because before I started school, I did a lot of googling about how to survive college with a chronic illness.  I was concerned that I wasn't going to have the energy to do what I needed to do and that I wouldn't be able to find resources on campus and I didn't have any real guidance from someone who had been there before.  So as an end-of-semester wrap up post, I'm writing a quick guide on how I survived a semester of college with a chronic illness.  Obviously this is only based on a few months worth of experience, and I'm sure I'll revisit this later as I gain more knowledge.  Additionally, I get that some of these suggestions aren't applicable to/workable for everybody.  This is just what worked for me.

1. I went to the Disability Resource Center

I can't emphasize enough how helpful this was.  Our coordinator, Nance, is amazing and gave me a lot of advice on how to navigate school in addition to setting up accommodations.  Now I have extended time and a separate setting for exams in case I need to lie down and rest for a little and some other useful stuff.  I also have Nance on my side in case I ever have to confront a professor about accommodations.

2.  I gave my professors the heads up before class started

At the start of the semester, I sent a (very) long email to all of my professors about my disability and how it could affect me academically.  This information ranged from big stuff like the possibility that I'll accrue excessive absences to little stuff like how I might have to run to the bathroom a lot because of how much water I need to drink.  Although my first instinct was to have this conversation in person, Nance told me to put it in writing.  That way I have a paper trail in case there's ever any dispute over what I said/need.  Not everyone may feel comfortable disclosing all this, but if you do, I highly recommend it.

3. I got Steve

Do you think you will need a mobility aid or any other assistive tech?  Yes?  Do not pass go, do not collect $200 - just go get it.

4. I way under-committed myself

In high school, especially pre-POTS, I was hyper-committed.  I was always in at least one show, rehearsing for a minimum of 2 hours a day, as well as various clubs, dance classes, and the like.  This year, I did the exact opposite.  I didn't know how well I'd be able to manage my work, so I'm very minimally involved in campus organizations.  I do a little bit with our animal welfare group, I have a radio show, and I'm in a couple other organizations, but I've mostly just been focusing on school.  I definitely recommend going in with very few commitments until you figure out how much you can handle.  I'll be picking up more next semester, but it was a good idea to start slow.

5. I went to school less than an hour a way from home

I get that this isn't possible for everyone, but I'm lucky enough to have found a school I love really close to home.  This proximity allows me to keep all of the same doctors and to see them quickly in case of emergencies (like when I got a bacterial lung infection a few weeks ago and my pulse-ox kept dropping).  I'm also able to get to my IV infusions easily.  I don't have a car, so I have to rely on rides from my parents, and having them close by makes that possible.  Sure, I had envisioned myself going to school across the country and being totally independent, but that turned out not to be best for me.  Going to school close really isn't the end of the world - my parents don't randomly drop in or anything.  I still feel like I'm living on my own.

6. I managed the heck out of my time

Do. Not. Procrastinate.  Just don't.  This is solid advice to any incoming first year, but it's ten times more important if you have a chronic illness.  You cannot afford to put things off, because it might be the night before the paper's due, you haven't written anything, and you're too sick to get off the floor.  I made to-do lists and plans and schedules and broke my work up into small bite sized pieces each day.  I haven't had to stay up past ten studying once all semester (knock on wood, obviously).  Work when you feel well.  That time is precious and you need to take advantage of it.

7. I earned my "felt awful but did the thing anyway" merit badge

Try as you might to manage your workload, there will be times when you'll have to do something even when you feel like the smiling pile of poop emoji.  You won't always feel up to doing what you need to do, but you kinda just have to come to terms with this.  Drag yourself to tutoring, force yourself to read those final fifteen pages, shuffle to class.  I've found a lot of stupid stuff to motivate myself - there's one particular fight scene from Daredevil I watch when I feel awful but have to study.  Sometimes I draw an ancient rune for strength and health on my hand.  I write myself encouraging notes in the margin of my paper.  Whatever it takes.

8. I kept on top of my health

I've made sure to get enough water, get exercise (even if it's as small as walking around campus), take my meds, get infusions, and get enough sleep.  You might feel like you don't have time to do those things, but you really don't have the time not to do them.  It'll cost you a lot of productivity in the long run if you neglect your health.

9. I didn't party or drink

I'm not just saying this because my mom reads my blog and I want her to think I'm a good kid.  I don't drink.  Alcohol is the last thing my body needs.  In addition, I don't like parties and I embarrass myself enough sober that I really don't need alcohol to help that along.  I live on a substance free hall, so I have a lot of friends who aren't interested in partying either.  We play a lot of games and watch a lot of movies, which are all low-key and not taxing on my body.

10. I conserved spoons

I can see my parents rolling my eyes at this, but I really did make an effort to take it easy.  I viewed my school work as essential and everything else as optional.  Sometimes you have to bail on plans and blow stuff off.

11. I've become somewhat flexible

I've tried to get better at ~going with the flow.~  Generally I don't love studying in my room, but if I'm not well enough to trek to the library, I'll just do the reading in my bed.  Often I divide my to-do list into "Must Get Done," "Should Get Done," and "If You Have Extra Time."  This allows for a little more flexibility.  Sometimes good enough needs to be good enough.  Don't hold yourself to the standards of your peers/impossible standards you set for yourself.  Celebrate the little victories

12.  I kept food in my room

This seems silly, but it's a biggie.  Having small, calorically dense foods in your room is really helpful when you're not up to getting food or don't have an appetite.  Eating somewhat regular meals is important!

I'm sure I'll have more to add by the end of next semester, but these are the things that have gotten me through this past semester.  Going to college with a chronic illness is possible!  Do not worry, my incoming first year friends - you can do this!  It's not always going to be easy, but I believe in you.  Go forth and conquer!