Back to School

I was of two minds going back to school. The first was like Peter Pan and his shadow.

“If he thought at all, but I don’t believe he ever thought, it was that he and his shadow, when brought near each other, would join like drops of water, and when they did not he was appalled.”

I would slip back into the rhythm of school, with its percussion section of tests and deadlines rattling away, and the music of learning would enchant me as it always did. My department would once again feel like home – a sort of chaotic, dysfunctional home at times perhaps, but home nevertheless. Oh, there might be a few changes, but once I was back into the swing of teaching and studying and tutoring, I would be back.

I tried not to let the other bit of my mind have too much air time, because it wasn’t particularly concerned with “thinking” either. Instead that bit of my brain tried to shake and worry the details of my return like a puppy with a rag – should I tell my students? What about my bosses? How was I going to manage to lecture when I couldn’t always stand? How was I going to keep medications close by and manage to take them at the right time when I was running back and forth to jobs and class and meetings? When would I get a chance to rest? Would there be someplace private at school I could rest, if I had to?

Still, most of those thoughts, such as they were, were about details. Minutiae. I’d get it figured out in the first few weeks, I told myself. There was no reason to think that I and school wouldn’t eventually join up like two drops of water.

Instead, I sank like a stone. It wasn’t two drops of water, seamlessly blending together. It was like being underwater and staring at pool toys on the surface, all bright colors and cheerfulness bobbing away out of arm’s reach. The other students all have lives, problems, and dreams, the same as I do, but college convention dictates you discuss the trivial.

“Why didn’t they give me a fork with the salad?” “I don’t think the professor will like my title.” “I have to prepare for a meeting with my advisor! I’m so nervous!” “It’s such a long walk over to the big library, so maybe I’ll order the book and have it delivered…”

It wasn’t that I didn’t care about those people, and by extension (some of) their problems. Especially since I knew a couple of my fellow students well enough to know that actually there were other bigger, much more terrible things going on in their lives, too. But at school that wasn’t part of the picture, and everything became just so terribly remote. I floated in the darkness below the flotsam of normal life. Sometimes it was peaceful, realizing that I didn’t really care that much anymore what a professor thought of my paper title, or if my notes were perfectly in order before a meeting. Other times I felt like I was drowning, trapped below the surface and riding much colder currents of terror and pain while the top at least looked comparatively placid. While the others wondered about forks for their lunch, I wondered if I’d go into anaphylaxis as my skin began to burn and my throat itch. They thought about the inconvenience of a long walk to the library, and I thought about joint hypermobility and if I’d be able to walk at all. I felt fresh out of trivial.

The adrenaline-fueled race to grab knowledge, keeping so busy that I danced on the edge of losing it – well, that joy feels a bit more fleeting and muted. The joy of being able to keep breathing or to eat without being sick feels much more immediate in comparison. When it’s not my body that’s pulling me apart, it’s my mind. The research I was doing before would enrich human lives, reclaim a lost part of history, and help explain how a part of society functioned. The medical research I do now, wading through dozens of scholarly articles while simultaneously playing catch-up from an education designed to prepare me for the performing arts instead of science, might save my life tomorrow, or someone else’s in a week. They’re both exciting in their own way, and I love both. And right now, my body still doesn’t have the capability to allow me to thoroughly dive into either.

I know because I tried to do both, sort of … to be the old graduate student me. I told myself that if I wanted to slip back into this world, I just needed to do what I did before. Fake it until you make it, right? I faked it for a week. I didn’t know that old habits would be so destructive, though, perhaps because they weren’t before. I went into anaphylaxis, fought off a cold, got physically ill, locked myself out of my apartment and my car, and slept for 12 hours straight when I made it to the weekend. I still missed 3 deadlines although they weren’t critical. Clearly I still have much to learn at college … and it looks like one of the biggest lessons of the term is going to be how to listen to my body but still keep my mind alive and my program’s requirements met.


 

 

 

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Me, Disability, and Higher Education

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I nearly cried after a meeting. Not tears of pain, or despair, or grief – those usually need little explanation. No. I nearly cried because I met an active researcher, professor, and librarian who was disabled.

Why did this affect me so profoundly? Perhaps it is time for a little bit of background on the state of disability in United States higher education.

10.3% of the U.S. population in their working years is disabled. 13.5% of students ages 3-21 receive accommodations, but only 7.6% of grad students are disabled. Only 42 U.S. schools offer a semblance of a disability studies program. (Stats from US census, NCES, and Syracuse University, courtesy of Niki Schroeder).

If only 7.6% of graduate students are disabled now, the number of tenured professors — some of whom may have finished their studies before the ADA was passed in 1990 — is probably equally slim. Since many with disabilities do not report them and tracking such data can be a violation of employee privacy, no firm data is available. However, the National Science Foundation reported that as of 2008, “out of 269,400 science and engineering doctorate holders with appointments in higher education, from chancellors to teaching assistants, approximately 19,700 (or 7.3 percent) had a disability (http://www.jstor.org/stable/23395468).

For me, the statistics are a little more grim. I attend a large research university. In 2013, the campus enrollment was around 43,000. However, only 10 students had registered with the disability services office for wheelchairs, and only 500 students were registered with the disability services office. That’s 1.16% of the student body (http://www.cincinnati.com/story/news/2013/12/25/fighting-for-more-than-herself/4197415/). As of today, 60-80% of students “do not feel ok reporting their disability on campus” according to the Electronic and Information Technology (EIT) Accessibility Program (https://gallery.mailchimp.com/17adf2dfe1e5d7d355b632521/images/7f39892f-bc21-4777-8551-b5ea7f8a4eab.jpg).

Additionally, I am a graduate student, thus already part of a statistically smaller registered disabled population – and I am at a performing arts conservatory. Now, over the eons of the arts, there have been many examples of successful disabled artists. For instance,  there was Ray Charles, a blind pianist, or Itzhak Perlman, a violinist who was struck by polio in his childhood. Ludwig van Beethoven and Bedrich Smetana composed while deaf. Vincent Van Gogh had epilepsy in the last years of his life and suffered from mental illness. Frida Kahlo painted from her bed.

Still, the world of the arts may not be as inclusive as those few artists above make it seem.  Male conductors still far outnumber female conductors, and its only in the last few decades that some predominantly male orchestras have even allowed female performers to become full members (in 1997, the Vienna orchestra famously finally allowed a female harpist membership). The university marching bands usually don’t have any member with obvious physical disabilities. At the professional level, physically disabled performers are virtually non-existent on Broadway, at the Met, or the American Ballet Company. That is probably why my school, which focuses on preparing students for just those sort of professional careers, does not seem to have any obviously physically disabled students.

But what of invisible illnesses? Of those, graduate students have plenty. There is no data on the number of students with, for instance, fibromyalgia, dysautonomias, chronic fatigue syndrome, etc. But there is some information on mental health and graduate studies, and the picture is bleak. In 2004, a survey of graduate students at the University of California Berkeley discovered that 45% of respondents had experienced an emotional or stress-related problem that had significantly impacted their well-being or academics. 1 in 10 had seriously considered suicide (http://regents.universityofcalifornia.edu/regmeet/sept06/303attach.pdf.). In 2008, a new survey put the number of graduate students who had considered suicide at exactly 50% (http://abcnews.go.com/Health/DepressionNews/50-college-students-felt-suicidal/story?id=5603837). In comparison, only 6.7% of the adult population of the U.S. experiences a major depressive disorder each year, and anxiety disorders affect about 18% of the population (https://www.adaa.org/about-adaa/press-room/facts-statistics). Of course, most of the data on mental health and graduate students comes from a single university – the University of California Berkeley – so perhaps it is just an exceptionally difficult program, and the situation isn’t really that bad – and everyone knows that statistics can be manipulated.

Still.

Graduate students are about 20% more likely than the average US population to experience a mental health issue that affects their health or performance at school. Yet most of the time, this isn’t discussed. In fact, the same 2004 UC Berkeley survey found that nearly 25% of its graduate students weren’t even aware of on-campus mental health services.

I’d love to believe that someway, somehow, my school is simply far healthier than the norm. That’s not exactly a supportive, inclusive wish, but it is better than the alternative – realizing that the low numbers of students registering with disability services or feeling comfortable about admitting their disability is actually more indicative of a culture that hides weakness and disguises illness rather than accepting, supporting, and healing those who are struggling. My hopeful wish withers in the face of the evidence I see every day of every week. It’s the inaccessible grad carrels on the 8th floor of a library. It’s the Starbucks “cure all” drink named after the school that everyone slugs when they’re sick, but can’t stop to heal. It’s students sleeping everywhere, any chance they get, and not just during finals week. It’s classmates coming to seminar doubled over with the flu. It’s seeing bouts of crying and apathy at every corner.

The school, to its great credit, is aware there is a problem. On the campus level, the IT department is trying to ensure electronic universal design and bring the campus up to the 1990 ADA requirements (after a tangle with the Office of Civil Rights). On my own college’s level, there is a physical therapy office in the complex to treat dancers when they inevitably get injured (a more-or-less accepted occupational hazard). There are now mindfulness classes offered, and the counseling office has decided that the conservatory is a good location for an emergency drop-in office. The library is in the process of changing its layout to make all areas more accessible – a massive venture. I do think that the heads of the school are trying to change the culture, and for that, I am both grateful and proud.

On other campuses, the fight continues. At the University of Pittsburgh, complaints have been filed every year since 2010 (http://pittnews.com/article/107584/featured/diversity-includes-disability/). Depressingly, the same article states that Pitt’s numbers are about average. The University of Santa Barbara California has a “Disabled Students Program … conveniently located on the second floor of the Student Resource Building”  – and separated from the elevator bank by a mesh walkway (http://dsp.sa.ucsb.edu/). At the University of Virginia, students are battling to have an adequate number of disabled parking spaces, since the current need far outstrips the minimum standards (http://www.cavalierdaily.com/article/2017/03/accessibility-issues-affect-students-on-grounds).

This is why I was so overwhelmed when I, as a graduate student, met a professor in my field who was disabled, because it felt like there was hope. This is why advocacy is important. This is why awareness is important, because without it, students will continue to struggle on, alone and afraid to get help, and no positive changes will happen in higher education.

#disabilityawarenss #inclusivity #365dayswithdisability

Chronically Ill Bitch, Baby!

I am a Bitch. I got called that during one of those long weekends that should have been going swimmingly — the beautiful blue sky, warm weather, fun events, and large party of people — but oddly, almost incomprehensibly, it wasn’t going well. I made it 30 hours before I was repeatedly dubbed a bitch in a restaurant by a member of my party. My crime? Well, succinctly, being a strong but chronically ill young woman.

The possible provocations, when broken down, were those aspects of living life publicly with a chronic illness: I am a Bitch because I didn’t want to discuss my food allergies with my fellow diners, loudly and publicly, in a restaurant, and I apparently had a Bitchy tone when I tried to shut the conversation down.

I am a Bitch because I didn’t want to try something, and so I just said I didn’t want it. I was also allergic to it, which might account for the “not wanting to try it.” Unfortunately I had to go into that in order to defend not ordering and paying for, as an adult, a food I couldn’t eat.

I am a Bitch because I needed to quickly eat a home-prepared snack in order to take medications about an hour before eating at the restaurant. The restaurant where I’d called ahead and discussed options with the chef before pre-ordering the only safe thing on the menu for me … oatmeal. I don’t think spoiling my meal was an issue, although I’ll say this: the restaurant really pulled out the stops on their oatmeal for me.

I am a Bitch because I needed to stop and take some medication. It’s something that I always try to do discretely but, thanks to the curiosity and control-seeking tendencies of my fellow event-goers, had to be explained in excruciating detail. (Where are you going? Why? Why do you need to take meds? What for? What meds in particular? Have you taken them yet? No, I don’t think you should take meds now!) I am a Bitch because I finally told them to go ahead so I could go to the bathroom (and deal with my medications in relative peace); I would catch up at the cars. I am a Bitch because I have to take medications about 8 times a day. My life-preserving measures are, of course, a huge inconvenience to everyone else, and earn me some well-deserved ire.

I am a Bitch because I had to take a lunch box and small bag of gear with me through an entire event (event staff did not have any problems with this). I am a Bitch because I walk slowly through the rushing crowds, and sometimes I need to stop and sit. I am a Bitch because it is safer for me to take the elevator instead of the stairs, even if this means I have to first find and then wait for the elevator to take me only one or two stories.

I am a Bitch because exuberant driving, like roaring through suburbs and pulling Gs at corners and lights, makes me motion-sick. Informing someone of my growing queasiness is spoilsport, complaining behavior. I am a Bitch because I need to sleep instead of party the entire night.

I am a Bitch because, while everyone else gets up, puts on clothes, and leaves, I get up, stretch, eat, shower, dress, and pack my lunch. And no, we were not late, and I did not wake anyone up.

For some reason, this particular instance of name-calling hurt far more than the odd cat-call on the sidewalk or elevator eye on the train. Coming from someone I knew, it was more personal at the same time that it is dismissively derogatory and shamefully sexist. On the other hand, the situation itself is rather painfully familiar both to me as a woman and someone with a chronic illness. As a woman, my desire to walk to the car by myself was interpreted as dismissive and arrogant, not assertive and capable. As someone with a chronic illness, I was flouting their concern for my well-being; no one had heard of the term “ableism” and it wasn’t quite the time to bring it up… or the presence of ramps, elevators, and shuttles scattered liberally through the event grounds that would enable me to make my way safely back to our cars. Throughout the weekend, my chronic illness meant that I had to behave in ways other than expected for a woman of my age. This might mean anything from going to bed early to being pro-active and firm about my diet. This meant I was defying social norms, and because of this willful defiance, I was a Bitch. As for tone, well, a person’s tone of voice is always subject to interpretation and is a messy no man’s land of interpersonal communication. Whether I was whiny or just trying to pitch my voice to be heard over the restaurant babble without simply shouting, even I couldn’t tell you. This doesn’t even take into account perceptions of the timbre of women’s voices over men’s. On an individual level, of course, thanks to the acoustical wonders of my human head, my voice always sounds different to me than it does to others.

Leaving that aside, however…

I am a Bitch, everyone!! It’s time for some deserved reappropriation. I earned my new title of defiance by being a chronically ill and assertive young woman. Even without the leg up in the bitchiness standings that my illnesses and sex have given me, it is entirely possible for you too to become a Bitch. Stand up for yourself. Trust your instincts. Take care of yourself. Do your own research. Think for yourself. Come to a reasoned decision, and then stand behind it. Don’t compromise your health for someone else’s comfort. Speak up. Don’t let others shame you for your race, sex, health, or any other little metric. Respect yourself.

To all my fellow Bitches, whatever your gender, hello! And welcome to the party. Fly high and strong.

 

Food Allergies and Vacation

My vacation is a series of family celebrations strung together like colorful glass beads on a summer camp necklace. Each bead for me is both beautiful and breakable. You see, eating is a central element of most of my family’s celebrations, whether it is potlucks or dining out at restaurants or ad hoc affairs at breakfast around the worn kitchen table with close friends.

And I have food allergies and sensitivities.

Most of them are new. There are a lot of unknowns. Only 4 days before I left for vacation, I went into anaphylaxis for the first time. The day before I got on the plane I collected my first set of epi-pens — and I still don’t know what precisely triggered anaphylaxis the first time. In the past year and a half, food went from being a joyous, tasty celebration of life into a horrible, illness-inducing, possible cause of death. The upshot: I was going on vacation, armed with allergy pens, a hastily drawn up diet that my doctors hoped would work, and my wits. It wasn’t going to be a pretty battle.

I had my first food reaction only hours after getting off the plane.

I’ve learned a lot from the school of hard knocks and frantic research on a cell phone in the wee smas.

  1. Always ALWAYS ALWAYS carry your epi-pens and allergy medications with you. Pack extra if possible.
  2. It’s great if you have an “eating buddy” or two — someone who knows what your allergies are and is close at hand in case of a reaction or an unexpected situation. Some sites recommend having everyone in the party know, but I’m an adult and frequently travel with large groups where it’s impractical to have everyone know, or even, if someone is very squeamish or this is business travel, potentially a liability. But I do need someone to have my back. Case in point: I’m sensitive to citrus. If I go to the bathroom and a helpful waiter fills my glass with water from a pitcher with lemon slices in it — a common occurrence — I’d never know until it was too late. My allergy buddies have me covered.
  3. Case the restaurants ahead of time like you’re a thief planning on stealing the Mona Lisa. Check out the menu ahead of time, if possible. Some restaurants have allergen menus online, and the chain Smashburger even has an app. If there are still questions — and in the case of nice restaurants, I’ve found there often still is — try to call ahead during a non-rush time. If you get the feeling that they aren’t taking your requests seriously, go with your instincts and move on to the next restaurant. I made the mistake of dining at one spot where the person who answered rather flippantly said she was certain they used canola oil, only to have my mouth break out in sores when I ate my french fries. A call the next day yielded a different answer: they in fact used soybean oil.
  4. Some restaurants will allow you to pre-order meals the day before if you have to be very careful, make a lot of changes, or are going to be ordering off-menu. I pre-ordered oatmeal from the breakfast menu for a lunch date at one restaurant because I couldn’t find anything else that would work well … and the restaurant threw in whatever they thought could ever possibly go with oatmeal, carefully put in side dishes, for free. 🙂
  5. Be polite but firm when asking for changes to a meal. Stress that this is because of an allergy. Most places will accommodate quite gladly and mark your order as an “allergy order,” because nothing gives a restaurant a bad rap like having one of its guests carted out via ambulance. It completely destroys the ambience. 😉
  6. If, even after all your precautions, you start to react, follow the suggestion of The Hitchhikers Guide to the Galaxy: DON’T PANIC. It makes it worse. First, medicate if you are capable. Try to make sure you are in a safe place — if you pass out, are you going to fall onto a hot grill or bang your head on a table? Get safe. Relax as much as possible; mast cells degranulate with stress. Then communicate to your allergy buddy or whoever is nearby, and follow the rest of the process… calling 911 or trying to find the nearest hospital, screaming, general mayhem, and crushing disappointment. Or skip some of those last few. 😉
  7. Having a list of safe restaurants already in hand is incredibly useful, even if it is just a few of your favorite chain restaurants. I, for instance, can eat exactly two meals at Panda Express, and about the same at Wendy’s. Having a list of slightly more fancy restaurants for the town you’ll be staying is also very useful when friends and family are planning events.
  8. Just because a restaurant has something on the menu you can eat DOES NOT necessarily mean it’s safe to eat there. Unless a kitchen has allergy protocols in place and uses designated cooking areas, traces of foods you’re allergic to can still be in your food. This is called cross-contamination. I experienced it in a “well DUH” moment of epic proportions, eating out at a dive of a seafood restaurant that regularly cooked shellfish in soy oil on the same grill I was getting my oil-less mahi-mahi cooked on. I had a burning dragon rash climbing with prickling talons up my skin in minutes and very narrowly dodged doing the epi-pen experience. Lesson learned: question before consuming. If a restaurant or kitchen doesn’t look like it’s handling things correctly, leave.
  9. I always carry some food with me (and have more at wherever I’m staying) in the quite likely event that wherever we go ends up not being safe for me. It’s also helped smooth the bumpy road of eating-based social interactions for my vacation thus far. At times, we’ve gone out for desert, but there was absolutely nothing I could eat. Being able to munch a fruit snack or Lara bar helped me still feel included and made my fellow party-goers feel more comfortable.
  10. Besides the websites of most restaurants, there are some other great websites to help you find safe food. One of my favorites is AllergyEats. https://www.allergyeats.com/. They even have apps for your cell phone. It’s dependent on user reviews, though, and can have spotty to non-existent coverage depending on where you are. Allergic Traveler has laminated cards you can order to show at restaurants: http://www.allergictraveler.net/. Or you can print out free cards at http://safefare.org/chefcard. Several sites offer translation cards for travel to other countries or dining at ethnic restaurants, like Allergy Free Table or Select Wisely. I’ve read a lot of blogs, trying to get a clue about how to protect myself. Allergic Child at http://home.allergicchild.com/traveling-and-eating-out-with-food-allergy/ was very thorough, and even though it was aimed primarily at parents with children, it was a good start for someone like me who is just now entering the world of allergic reactions. Another blogger who travels worldwide suggested bringing along pictures of what it was she was allergic too, in case something is lost in translation.

Happy vacationing, good luck, stay safe.

 

6/15

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I got diagnosed with POTS/VVS in November of 2016. They are only two of any number of dysautonomic conditions. I had been seriously ill since August of that year, and sick for about two years before that. Being diagnosed was so important for me. I had known for a long time that something was wrong, very seriously wrong, but it had been hard to convince doctors of that. Like many dysautonomia patients, I sometimes physically looked fine. I was told by more than one doctor that my odd constellation of symptoms was probably nothing and that I should go see one of the campus trainee psychologists. I doubted myself. But no mental change brought about a physical cure. Instead, I got kept getting sicker and sicker. Finally, bouts of fainting landed me in the ER. I was so ill I couldn’t drink water unless I was on anti-nausea meds, and I had no sense of balance – the world shifted around me like the deck of a ship in high seas. That got me a referral to a neurologist, and she discovered a vitamin b12 deficiency and POTS. A cardiologist later added VVS.

I was lucky.

The average time to diagnose dysautonomic conditions is six years. Six years of struggling without answers, six years of doctor’s appointments, medical tests, and therapy. Six years of doubting your own mind, and body. SIX YEARS.

The Dysautonomia Project is trying to change that.Their goal? Reducing the length of time for a diagnosis from 6 years to 15 minutes – the average length of a GP doctor’s appointment. Patients need information so they can advocate for themselves. The general public needs to recognize that this is in fact an illness, and sometimes a very serious one at that – the average rate of disability for those with dysautonomias is comparable to that of congestive heart failure and COPD. Perhaps most importantly, physicians need to be educated about these conditions. This won’t happen without a lot more awareness. If you have a moment, please visit the Dysautonomia Project or Dysautonomia International for more information and to help spread awareness about these conditions.

https://thedysautonomiaproject.org/

https://thedysautonomiaproject.org/project/615-is-the-self-proclaimed-dysautonomia-day-as-it-typically-takes-6-years-to-diagnosis-but-with-proper-training-that-time-could-be-reduced-to-as-little-as-15-minutes/

http://www.dysautonomiainternational.org/

 

 

 

Water A Flower Day

Yes, that’s right! Today is Water a Flower Day.

In the physical world, I’m all out of flowers to water. My orchids are stubbornly remaining barren, and the garden boxes are similarly devoid of blossoms. Instead, I have pictures of the beautiful flowers at a local arboretum a friend and I visited recently, armed with suddenly flimsy-feeling cameras against the hissing guards of the garden.

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Happy Water a Flower Day!!