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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First Fall Monarch

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I was at the end of a walk, feeling a little tired and disappointed about not getting very many good pictures for all the weight of the camera I’d lugged along, when suddenly a bright orange shape winged above my head. The first monarch of fall. It landed high on a tree and tested its wings against the wind. Shiny, almost tentative, and with nary a scratch or peck on its scaled wings, it must have been a relatively young butterfly.

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I grabbed a couple of quick shots before my long-range lens – and my arms! – gave out, then headed back with the start of fall’s glorious copper flame dancing over my head.

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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

Titanium All Around

I’ve moved!!

And now I’m surrounded by a lot more metal than ever before. Even when I lived in a (to me, HUGE) city, I was still somehow out in the suburbs, commuting in each day. Now I’m much closer to the heart of my city – one of those places where all of a sudden public transit is a reality and dinner is a quick stroll up the street. There’s construction and sirens and helicopters and guys talking to their battered shopping carts filled with the flotsam of life on the fringe.

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It’s a shock all right. There were no birds on my non-existent balcony, no rabbits snacking on the carefully planted flowers, no dapple-coated fawns wobbling across the dew-soaked lawn this morning. Yes. I miss the green.

The good news: there IS green about, and it’s not very far. It’s more of a treat than an everyday reality, but to be honest just trying to live in my old place, with its three flights of stairs that insisted on pitching and yawing like the deck of a schooner in high seas, took so much of my energy that I didn’t really have a chance to explore the green around me. This might be much, much better — as soon as I find my missing roasting pan and fix my camera lens.

Time will tell. Strangely, in this new place I’m increasingly reminded of the reasons why I decided on titanium for half of my blog title. Strong, light, and resilient, it can burn where nothing else can throw off light. I hope that, mixed in with my flitting butterfly migrations this summer, I might also absorb a little of my new environment and learn a bit of titanium’s properties as well.

In the meantime, I may yet learn urban photography. One can only hope…  🙂

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The Downside of Positivity

I was on the phone with a dear old friend, telling him about an upcoming move. “And it’s right across from the hospital, which is either terrifically convenient or phenomenally depressing!” I finished, describing my new apartment’s location with as much humor as I could manage.

“Well, that’s a good thing!” he said.

“Why?” I asked. “Which one? That it’s convenient…?” There was something in his tone that made me think I was missing something here.

“I was going to say, because it will inspire you to get better!” he told me.

Ouch.

 

With well-known illnesses — say, a cold — most people do not dole out droll little bits of wisdom concerning positive thinking and inspiration. No one believes that a cold will go away because I simply want it to. Instead, they recommend some OTC medications, rest, and perhaps a good hot whiskey with lemon. It’s only when an illness or condition is not particularly well-understood and is (usually) long term that the troubling statements about positive thinking start. Once you’ve experienced this for a while, you begin to notice some very troubling downsides to positivism.

  1. The continual stress on “being positive” can deny the validity of other feelings, like sadness, anger, or loss.
  2. Pushing positive thinking can lead someone to feel guilt over feeling any other emotions but positive ones.
  3. Positive thinking alone will not cure diseases. But statements like the one my friend made place the burden of regaining health solely on the patient. To get better, I just needed the proper mental state, or the right motivation.
  4. The “positive thinking will cure you” mindset leads to guilt on the part of the patient when positive thinking does not actually lead to health. Since guilt is a negative emotion, this can lead into a downward spiral … must think positive to get healthy – not getting healthy – not positive enough – my fault, guilt is a negative emotion, must instead think positively – still not well, more guilt because the first influx of guilt wasn’t apparently quashed well enough. Guilt on top of guilt.
  5. If a cure is not achieved, then to those pushing positive thinking, you just haven’t thought positively enough. This leads to patient-blaming by those who believe in positive thinking as a cure-all.
  6. A failure to improve could imply that you just need more motivation to truly be positive. This does not always mean creating positive and enjoyable experiences for a patient. My friend thought that living next to a hospital might, through mentally stressing me, inspire me to become get better. Emotionally and physically vulnerable patients can be put in harmful situations quite easily. To this school of thought, a more intense job, a long hike, or abusive emotional manipulation are all just things to motivate you to get better, and are therefore completely justified.
  7. I sometimes feel that positive thinking became a fad so quickly because Western society is losing the ability to deal with negative emotions. We become frustrated when someone is hurting and we can’t do anything about it, and instead of empathizing, we cheat. We tell someone to stay positive. We blame them for their emotions and condition. We run from the wide range of emotions someone who is chronically ill experiences. Embracing positive thinking as a cure for illness doesn’t just hurt the patient — it stifles emotional growth for those around them by giving them an easy out. Blame is usually easier than empathy, sympathy, and compassion.

Being positive is not completely a bad thing. Most of us, when given the choice between being depressed and being content, will wholeheartedly chose contentedness! It is also very possible to be both chronically ill and happy. I am by no means against positive feelings or saying that those with disabilities cannot be happy. No.

Rather I think it might be time to admit that positivism has a negative side too, and applying it as a panacea might very well wound those it is supposed to heal.

 

 

 

Butterfly on the Go

Many different species of butterfly migrate, traveling long distances on fragile wings in journeys that cover thousands of miles.

I am on my own annual migration – vacation. Each year I travel home for Christmas and/or a couple weeks of summer. This year was a grand trip that will mean several important events – anniversaries, birthdays, holidays, and graduations. I’m documenting what it is like to travel and vacation with a chronic illness. Already I am deeply envious of those butterflies, who seem to glide so gracefully through the air on their journeys … but even they face the odd storm.

The first challenge of The Vacation was setting dates. On top of the normal summer work/study that is a graduate student’s life, I had to also work around a rigorous schedule of doctor’s appointments, testing, and surgery. I tried pick dates when I wouldn’t be as sick [“you’ll be all better by then!” relatives sometimes insisted, and I would do my best not to try to explain the meaning of “chronic” and the difference between “treatment” and “cure” again.] I jammed as much medical stuff as I could into the weeks before The Vacation. And I paid out-of-pocket for medication refills that my insurance wouldn’t cover because it would run out before the end of the trip.

The next challenge was packing. I had enough medical paraphernalia to fill an entire carry-on and then some. My sister and I were going to travel together. We split a checked bag and I packed a few things into the extra-large duffel, hoping desperately it would make it through. Important medications went with me. My carry-on was definitely over the size limits, but fortunately no one made a point of it. I bought a portable sharps disposal container (it looks rather like a very very large crayon).

It has been working great. I had medications that needed to be kept cool, or better yet frozen. I purchased a medication cooler case online. I had no trouble making it through security with that or the medications. I told every single TSA agent I met that I had medical implants and a bag fully loaded with medical gear, and they could inspect it any way they liked! In the end my pack simply went on the conveyor belt through the machines, and a few whispered conversations later, I was just handed my bag at the end of the line. They were helpful and respectful the entire time. The hardest part was the endless standing in lines – to drop off checked baggage, use the bathroom, or get through security. I have POTS/VVS, and one of the challenges of that condition is standing for long periods of time. My heart races, my blood pools in my extremities, and I feel absolutely wretched. If it takes too long, I’m in danger of passing out. But I did NOT want a wheelchair! Instead I wore compression socks and imitated the children in the airport… I sat on my luggage or knelt on the ground when I needed a break. There was the occasion odd look but no comments, and I count it as a success.

Once through security, we learned our plane was broken and had to be fixed. It took so long they had to get new pilots!  By that point we’d spent so long at the airport that I’d needed to eat twice and take medications. The employees at Starbucks gave me hot water to mix medications in for free. No one looked at me oddly while I took pills. There was a sharps disposal unit on the wall of the women’s bathroom. And Smashburger has a simply AMAZING allergy app to help you find safe foods. In the end we raced a thunderstorm off the runway and into clear skies. It was a very positive experience even with the delay.

The plane was another story. It was cramped and uncomfortable. There wasn’t anything that I, with my food allergies, could eat. Even though the cabin was felt icy to me, my medications were thawing by this point, the little gel packs giving up after a lengthy battle against entropy. I asked for ice from the stewardesses and, after some discussion, they filled an air-sickness bag full of ice. My sister, capable and fierce travel companion that she is, helped me fill a sandwich bag with ice for the interior of medication case, then stuff the entire case into the barf bag of ice and wrap that in a jacket. It stayed cold the entire flight. While it might have been a little messy, we made it! And everyone was so helpful.

Finally, we picked up our luggage and our ride picked us up. We had to break the four-hour long drive home into legs, but after only 14 hours of travel, we made it to our home away from home.

Lessons learned: have food picked out at the airport ahead of time. However much food you pack with you … times by 1.5. I wasn’t the only one going through the lines with medical supplies, by any means, and I noticed the TSA seemed to handle it much easier if you declared it frequently and politely. Those who didn’t warn anyone took longer going through the checkpoints. I’m also going to see if I can’t find some tiny instant-ice packs. Supposedly, if they are deemed “medically necessary” there’s a chance they’ll be allowed through. On the homebound leg of this trip, I’ll traveling for 5-6 hours before even getting into airport security, and the first packs will already be…well, slush might actually be a tad too optimistic.