If you follow me here, I wanted to link y’all to a new mini-essay I published this morning about disability & the election (I know, how many more election essays can this world hold, but it’s almost over, right?). Also, it’s about my new favorite hat, which looks like this:
I’ve noticed that you’ve been getting a lot of flak. A lot of hate. People use you as a punchline. Like, “I had a cold.. but WebMD told me I had cancer!” That must be hard. So I’m writing to let you know that I’m still here, as a friend. I’m a loyal, true believer. Yes, there have been times when I just had a nosebleed and you told me it was either a brain tumor or like, I don’t know, Ebola, but one time, when it really counted, you were my ally.
You probably don’t even know what I’m talking about, so I’ll tell you. Once, when I was 18 and home on winter break after my first semester of college, I had just gotten over what my local doctor told me was a bad virus when my feet went numb. And then they stayed numb. It was very odd. I did a lot of things to try to get them to un-numb themselves, but nothing worked. I put on warm socks and ran up and down the stairs. I rubbed them a bunch. I took hot showers. And then, WebMD, I turned to you. I plugged all the things I was feeling into your lovely symptoms checker and you spit back at me “Multiple Sclerosis.”
Multiple Sclerosis was something I knew nothing about. I didn’t know anyone who had it. I knew that sometimes people did charity runs or bike rides for it because it was A Very Tragic Disease that, I don’t know, probably Only Very Sick and Old People had and probably led to them being Confined to Wheelchairs. Thus, I yelled to my dad, “Dad, could I have multiple sclerosis?”
And he, as every father probably should when a teenage daughter says “Dad, could I have [insert tragic disease here]?,” said “No, what? No.” Thus I attempted to put it out of my mind. But, as the existence of this blog might have led you to guess, you were right, WebMD. You were right! You are probably wrong a lot of the time, but with me, you were right. And I argued with a few doctors and convinced them that something was really wrong and that I knew my body and knew that it didn’t feel right and that I really really did need an MRI. Finally, though they thought I was crazy, they gave me one and then they scratched their heads because you guessed it, there were lesions, and without your symptoms checker, I might not have gone to the doctor.
Which is really my point, other people who might be reading this letter (oh, is this on my blog? How interesting.). My point is that you know your body better than any doctor might and even though WebMD is often wrong and you don’t have a new kind of cancer every time you have a headache, sometimes they’re right, and if it’s WebMD who convinces you to go to a doctor and makes you feel legitimate enough to say, hey, listen, I want you to run that test, then so be it.
A thing, though, which is strange, is that I went back, for old time’s sake, let’s say, and I put in all those symptoms that I had, because, I don’t know, masochism, and MS didn’t come up. The top results were much less serious conditions, even though I put in all the symptoms I had which were accurate and pointed to an accurate diagnosis. I had to scroll down a very long list to find MS. WebMD, are you feeling pressured? Are you trying to change your reputation as an over-reactor, the website that says cancer when it’s just a nosebleed? Don’t tell someone like me “Poorly fitting shoes” (an actual result just now) when they have MS. You know that doesn’t explain the nausea, the dizziness, the vertigo, the vomiting.* WebMD, be yourself. Just tell us your truth, we can take it! Be a tool of empowerment, even if people don’t see you that way. Some doctors suck and barely listen, but you take every symptom into account and give every possible answer. Keep doing that.
a Hopeful Fan
*seriously, I have worn some poorly fitting shoes in my life, and they have never caused… MS-like symptoms.
If you get strep throat (which I just did), you go to a doctor and get antibiotics. Right? This is how you fix strep throat.
If you break a bone, you get a cast.
If you trip and fall, you pick yourself back up and if you cut open your finger, you put a band-aid on it.
We seem to have very standard ways of dealing with a lot of problems that can happen to our bodies. If any of the above things happened to me and I didn’t follow the courses of action that I outlined, you would wonder why, right?
If I got strep throat but told you that I wasn’t really convinced that antibiotics would help it, you might be a little confused.
For some reason, people seem to think that this isn’t how it should be for some diseases. For instance, we’re supposed to be chill with the fact that Ann Romney, along with many other MS patients, has chosen to not take any medication.
What? Apparently the PC thing to do about that is to not say anything. We can’t comment because it’s her choice and we can’t laugh at her stupid horse therapy (“hippotherapy,” whatever) and we can’t make value judgments because apparently she has made her own logical choice.
I’m really tired of this.
She’s being irresponsible. She’s opening herself up to the possibility of being literally struck down with an MS relapse at any time which could put her in a wheelchair or cause full-body paralysis or cause her to become incontinent or cause blurred vision or nausea or vertigo or… the list is pretty damn long.
When I’m relapsing, my vertigo is too strong for me to walk. I can’t eat anything without throwing it back up. I can’t take a shower without collapsing on the bathroom floor. I go to the ER and they give me one drug after another until I’m too exhausted for them to do anything else and then they send me home. My (wonderful) friends and family drop everything to take care of me. When I’m relapsing, what I want is to just sleep through it. Since I’m a responsible person, I’m on a drug (Copaxone) which reduces my relapses by 30%. I have an illness/disease/condition/new-best-friend-for-life/whatever you want to call it, and I treat it. Because that is the logical thing to do.
Aside from all the other crap that Mitt Romney does (see my last post for some details), do we really want a president whose wife is a ticking time bomb? At any moment, she could relapse, and all his attention would have to be on her. As it should be, since they’re married. But all his attention wouldn’t be on her because he loves her or because she has MS, it would be because she’s irresponsible, and she’s put herself in a precarious position. I have no respect for that. And neither should you.
Yesterday was a very happy day. Why? Well, in case you (somehow) hadn’t heard, Obamacare passed.
From CNN: “the law makes it illegal for any health insurance plan to use pre-existing conditions to exclude, limit or set unrealistic rates on coverage”
Hey. You guys. That means me. And anyone else out there with MS. We can all get insurance now.
Which is great, because my medications cost around $5,000 a month without insurance. Luckily, I’ve been on my parents’ plan so I’ve never had to pay anywhere close to that. But, not gonna lie, I was totally freaked out about what would happen after I couldn’t be on their plan anymore. How would I get a job right out of college that was good enough to get me good insurance? While many young adults are healthy and would simply not get insurance so they didn’t have to spend the money, that was never going to be an option for me.
Some thoughts I have on health insurance:
1. There are a lot of people on the internet who are talking about Obamacare like it’s some big conspiracy to get us all to buy something that we don’t need. No, this is just how civilized countries do it. I know we’re a little backward (especially here in PA, where we apparently don’t allow expert witness testimony in trials… what?) but this is good news. Universal healthcare is a good idea. People being healthy is good.
2. Our public health insurance system is a little convoluted, and I’m hoping that now that more people will be on public health insurance, the system can be reexamined and fixed. If you’re not sure what I mean by convoluted, here’s an example: A woman who is already on the California version of Medicaid, Medi-Cal, who needs breast or cervical cancer screening, must also apply to the Breast and Cervical Cancer Treatment Program (BCCTP) and then, if she also needs screening or treatment for cardiovascular problems, must sign up for a third program, WISEWOMAN. There’s no good reason for those to be three separate programs, as far as I can tell, and I spent a semester studying the whole system. Hopefully Obamacare will lead to some streamlining of public health insurance!
3. Many people seem to be upset about the “healthy” people taking care of the “sick” people. This is really bizarre to me. Health is not a permanent condition. People always ask me how I got MS, and they always seem to be hoping for it to be something that I did. They want to blame it on me (do I drink? do I smoke? do I not eat enough vegetables? do I not exercise enough? do I watch too much TV? do I get enough sleep?) so that they can have some way of avoiding it. If they can figure out what I did “wrong,” then they can just not do it and stay healthy. That’s not how it works. One day I was healthy and the next day I woke up nauseous. One day I thought I might have Lyme disease and the next day I knew I had MS. For a lot of diseases, it’s not about doing something “wrong.” They just come out of nowhere. Cancer can hit anyone. MS can too. Healthy people are not likely to stay that way, and perhaps they should be a little bit nicer about taking care of us “sick” people. Because they’re probably paying it forward.
4. People’s idea of “expensive” medical care is very strange to me. In a class I took last semester, a professor defined “expensive” medical care as being $5,000 per year. As I already mentioned, my meds are $5,000 per month. AKA $60,000 per year. When I first tried to talk about this to some of my friends, I wasn’t explaining it that well, and their response was “yeah, but you’re not the average person.” The more I thought about it, though, the more I realized that many other people are in my situation. My syringes cost $143 each and can only be used once. I need one per day. That’s true for everyone on Copaxone. There’s probably a similar cost for other injectable medications as well, including medications for diabetics and blood-thinners. Sometimes it seems like people are mad at those who use the ER for doctor’s visits because they don’t have insurance or people who are on a lot of prescription meds that they don’t need, and think of those people as the only ones with “expensive” medical care. That makes “expensive” medical care seem unnecessary. That’s not the case for those of us with chronic illness, and I think our situation needs to be publicized and discussed. We have “expensive” medical care, in numbers too big for a lot of people to even fathom. And it’s very, very necessary.
Aside from that, apparently CNN mis-announced the results at first, leading to a slew of highly embarrassing “Goodbye Obamacare!” happy facebook statuses. I love when Republicans look dumb. Lucky for me, the Tea Party keeps talking!
TL;DR health insurance is important for sick people, and healthy people don’t always stay that way so they should be happy too. Yay Obamacare!
…and other common misconceptions about multiple sclerosis!
If you happen to go to the grocery store and peruse the magazines, you’ll notice that the cover of the current issue of People is the story of Jack Osbourne’s very recent MS diagnosis. (here‘s the version that they put online, very abridged)
Um, to the writers of People articles, do you get your medical information from the 1980s or something? Just a few quick quotes from their terribly researched article:
–“..symptoms could flare up as seldom as every several years, though they usually grow more frequent and debilitating as a patient gets older”
–“MS usually begins with symptoms that come and go. It typically progresses over 15 to 20 years into a more debilitating form that leaves some in wheelchairs.”
–“MS attacks the brain, and in its relapsing-remitting early phase, which Osbourne has, causes fluctuating symptoms.”
-and most wonderfully, from the cover “‘I won’t let my son die’ Sharon and Jack Osbourne on the diagnosis that has the 26-year-old fighting to save his vision, his future and his life.”
To clear up all the misinformation that you guys just read: MS no longer necessarily progresses, patients diagnosed today with relapsing/remitting MS (RRMS) typically have a 25% or less chance of ending up in a wheelchair, and um, RRMS is not an “early phase” for some more horrible version. People, you suck.
But Jack Osbourne, man, you rock. Here are some better quotes (which amusingly contradict all the crap that People is trying to tell us in the exact same article):
–“Right now am I going to be in a wheelchair? No. But if I don’t take care of myself, who knows.”
–“There’s no rhyme or reason. That’s the worst part. You can go to bed feeling fine, and you can wake up and your leg might not work.”
–“I think within the next 20 years they’re going to have a cure for this.”
–“I think when people hear that you have MS, they think, ‘Oh, I’m sorry, your life is over,’ but my life is far from over”
So I’m currently tweeting at Jack (I am really bad at tweeting) and hoping that he’ll click over to my website, because I wanna be MS friends with him. Jack, if you clicked my link:
Do you want an MS friend? I’m pretty low-key. I have Clay Walker’s phone number and didn’t give it to anyone. Also I was the flower girl in Ethan Hawke and Uma Thurman’s wedding and I haven’t even sold the dress on E-Bay. So I’m probably kind of trustworthy. The things you said in the article were super-cool, sorry that People writers are douchebags who don’t even know to wikipedia a disease before they write about it. Contact me in some way pretty please! We can try to figure out what Race to Erase MS even is (since it’s not an actual race) (with that name it should clearly be some sort of walkathon!) and talk about Copaxone. I’ve been on it for over a year now, gross.
I’m fairly bad at predicting what I’m going to want to write about. Actually I think my brain rebels against it. Every time I’ve said I’m going to write about something, I’ve turned around and gone to pretty much the opposite of that topic. I don’t know what’s up with that. Consider this my apology for doing it yet again.
Today what I want to talk about is accessibility. Accessibility is a really big deal, and I think a lot of people are really used to buildings being accessible in the US. Probably because that’s how it should be? Yeah, that. I’m fairly used to seeing ramps and elevators. It’s a good thing.
Wesleyan doesn’t seem to agree. Wesleyan Students for Disability Rights (WSDR) founder Allegra just emailed our listserv asking for thoughts on Wesleyan’s accreditation self-study in regards to disability, and here are my thoughts.
In the accreditation self-study, Wesleyan says “Limited funding, steep topography, and numerous historic buildings challenged the University’s ability to satisfy accessibility needs without compromising the historic character of the campus.”
I love Wes and everything, but I didn’t realize our semi-shitty classroom buildings were so “historic” that we couldn’t possibly add a couple ramps and elevators without “compromising” them. And ya know, those works of art that are the Foss dorms probably couldn’t be contaminated with wheelchair access either. I think it wouldn’t be a big deal. I think the more honest answer is the “limited funding,” since it’s becoming less and less of a secret that Wes is a bit strapped for cash (need-blind? What?).
I decided to do a little bit of lazy “research” and found that 25 of Wesleyan’s buildings are listed as “first floor access only” (sometimes worded differently than that) on their disability accessibility map page thingy. And not every building is even listed. Including my house, where not even the first floor is accessible. That’s not awesome, Wesleyan. First floors are usually not all there is to a building. Classes aren’t always on first floors, our friends’ dorm rooms aren’t always on the first floor, that art show we want to see or lecture we want to hear isn’t always on the first floor. This is a little bizarre.
I’m not affected by this right now in that I’m not in a wheelchair.* In fact, I’m pretty sure that no current Wesleyan student is wheelchair-bound. I don’t really think that’s a coincidence. I think that if you’re a student looking at colleges and you’re in a wheelchair and you come to Wesleyan, you’re probably going to look around and realize it’s not the place for you. And that means we’re losing people who could be awesome members of our community.
I don’t know if other colleges do it better, to be honest. But I do know that Wesleyan is an awesome place that I love a lot, and I wish the community could hold itself to a high standard of accessibility and acceptance of disability. (Kinda like we do for the LGBTQ community, do many colleges have this going on? Didn’t think so) And let everyone get to WestCo wine and cheese.
*but the cool thing about MS is that I could be in a wheelchair at any moment (plot twist!), and if so, I like to think that I’d be able to stay at (and still love) Wesleyan
Home and Magic are two things that I maybe didn’t fully believe in until after the past two days.
Home is a thing that’s hard for me to define. There are places that feel like home and can be clearly defined that way: my family’s house in Gettysburg, for sure. It is the address I put for “permanent address” on forms, it is the place where I can stay up until 4 AM and walk around in my underwear without worrying. It is where my parents, brothers, and pets live, it is where I spend my breaks from school. Having just left it, I do feel homesick. Especially for my mommy, who writes such nice blog posts about my messy room.
But it’s in a town that’s not home. I’m going to awkwardly quote Bowling for Soup now:
I hope this song finds you well.
And I hope that you’re doin’ fuckin’ swell.
I hope that you’re back up if you’ve ever been down.
And I hope that you got the fuck out of our hometown.
I try not to refer to Gettysburg as my hometown, although it is a town which my home is in.
But then, my parents’ house isn’t my only home. I was very much reminded of that today.
Being back in Provincetown is surreal. I walk around town and everything seems less colorful than I remembered it. Smaller than I remembered it. The problem with being a child in a place and then leaving is you have this image of all streets as wide, all flags as bright. FAWC, where my dad used to be director, seemed familiar but not quite right. There was the place a cat scratched me (I was just trying to be friends!), the little house on the quad where we lived, the newly renovated offices that used to have swinging doors that I would skip through. Memories of silent auctions and days spent sitting under wooden staircases, telling myself stories.
Commercial Street was also strange. I found the coffee place where my mom would buy me muffins and scones (lemon poppyseed was my favorite, I think), but it was closed for the off-season. I found two places that sold salt-water taffy, and, wanting to buy some for myself and my brothers, I was torn. They were across the street from each other, I could remember being in both stores. Which one was better? Did I have a preference, ten years ago? I chose the one whose door was hanging open, it seemed more welcoming, but I instantly regretted it. It felt touristy and fake, the other one, out the window, looked more family-owned and homey. I was shamed, a tourist in a town that had once been home. I bought taffy and left, annoyed.
But then. Magic! My dad and I went over to Pat‘s house before going out to dinner with her. Everything was exactly as I had remembered it. Pat’s house is unchanged, but also organic and living. Her new dog, a wolf mix (70% wolf, Pat thinks) barked at me and I remembered that I was a stranger and that things were new, I guess, even if everything seemed perfectly congruent to my memories.
Pat’s old dog, Atisha, had been my peer as a child. We were the under-table dwellers, those who played with tennis balls, the shorter-than-everyone twosome. I had hung out with her in a den of pillows and sheepskin under a table, that den was still there. It looked impossibly small. Paintings, some by Pat and some by others, covered the walls. Plants grew everywhere. Outside, we could see the beach.
I can say “I never lived there, it is not my home.” But I was alive there, and it felt like home, so maybe that’s not true. I have no concept of how much time I actually spent there, if the way I feel about the house as a place is reasonable or deserved. If I am just one of many children who feels that they grew there, though maybe not up. Maybe just better.
Home for me is also a weird concept I guess because of the whole long distance relationship thing. A part of my home is always with Ari (oh hey) even though we’ve never lived in the same place. Teenage love is very self-centered, though I just told my dad that compared to other teenagers, Ari seems about 50 years old. In a good way. I have an old-person’s disease (so people tell me) so I guess we’re both secretly elderly.
Next year my home will be a little less torn. Ari got into Wesleyan. Real tears of joy happened on my end (Dad was very amused). I guess that’s a little magic too. I’m not the “tears of joy” type (usually).
I’m really happy right now.
PS: sorry about the pictures of Pat’s house. It was a terrible moment when I realized that I was in one of the most magical places in the world and only had my cell phone as a camera. Atisha’s grave is the first picture, the rest are inside Pat’s house.