Modifying myself in an un-modifiable environment

Sketch of person praying for exam success

Sketch of person praying for exam success

I have a psychiatric disability. Before this year, despite that I have been psychiatrically disabled for 13 years and have gone through my entire college career with this disability, it wasn’t until recently that I identified with that label, or really understood what it meant. For me, for many years, it was a nicer term, a replacement label for “mentally ill” but was still tinged with slightly negative connotations. It wasn’t until this year that not only could I fully realize the pain of disability, but the pride of it. Especially in a place like Academia, where rationality and the cogent mind is highly valued, having a psychiatric disability can make you seem unfit for the job. But, I realize now that I am fit, it’s just academia is not. Not yet, anyway. I’m finally OK with not being just rational, but being rational, and crazy. The two aren’t mutually exclusive.

At the beginning of the year, I was a member of my school’s Graduate Student Advisory Council, the chair of the Student Welfare Commission. I had a great job as a graduate student assistant at the Graduate School, and the mom of a 3 year old and a new baby. I was studying for my qualifying exams, scheduled for May. At first I felt confident about juggling my various duties, but as the date of my qualifying exams grew closer, I began to feel flustered, irritated and distracted. I grew more and more tired, and time began to slip away from me. I set aside hours each week for studying, but no matter what I did or how hard I tried, the hours would slip by and it seemed as if I had gotten nothing done. The tiredness turned into anxiety. What if I don’t get through all this material? What if I fail my exams? What if I have to postpone my qualifying exams, and then keep postponing them? Will I ever graduate? Such thoughts, normal perhaps for many graduate students, propelled me into activities to manage my anxiety but quickly grew into a steady state of fear and panic. I made endless lists and schedules and downloaded various apps and software to help me manage time and material. I was spending an inordinate amount of time trying to find tools to help me do what only months before I could do on my own. Time and time again, I found it hard to sit still, to focus on the words on the page. Then my anxious thoughts turned into something more panicked: What if forget how to read? What if I can’t do this? What if I am completely unable, in the way that my brain works, in who I really am, to do this at all?

I pared down on my responsibilities by leaving the Graduate Student Advisory Council, deciding to chalk up my lack of time and energy to being the mother of two children with too many responsibilities to be able to actively participate in the organization. I found ways to increase the amount of time studying, sometimes taking evenings away from home to study. But all along, this bone-tiredness, this anxiety, was all a precursor, a foreshadow, of my year to come. By the time I took my qualifying exams in May, I was a complete mess. I remember when they were delivered to me by email. I opened the email, read the questions and my worst nightmare had come true: I had forgotten how to read. Panicking, and crying, I called a friend (who isn’t in my program, or in grad school, just a great friend who is calm and positive) to read them out loud to and we discussed them. Only after she was able to calm me down did the meaning of the words on the page slowly make sense. Still, I felt sick to my stomach, my hands shook, and my head started humming. My vision would blur and I’d have to strain my eyes to bring the words in focus. What followed was three days of compulsive writing. I couldn’t step away from the computer for longer than a bathroom break, or the overwhelming anxiety would cause my hands to shake and my stomach to lurch. I would have to rush back to the computer and begin typing-anything-to bring the anxiety back down to a manageable level. I hardly ate, but when I did, I did so over the computer. I wrote all day, into the night, often going to bed long after 3 or 4 morning and not sleeping well. My thoughts were disorganized, there but not connected, like a tag cloud. Even though I had an intuition of how they came together, I couldn’t pluck it from my head and put it on the page. I wrote pages and pages of thoughts, attempting to bring them all together. I would rewrite the same concept, and being unable to revise or choose between different versions, I put them all in the document. Everything I knew about writing: organization, flow, structure, order of ideas, topic sentences, thesis, grammar and punctuation, revision, everything had evaporated. I was simply writing constantly and compulsively to manage my anxiety. I was downloading my brain in a raw format.

I passed those exams, but by the time I received the decision I was in such a bad place that I couldn’t feel elated, or even relieved. I certainly didn’t feel proud. Something about qualifying exams broke something inside me. In the weeks following, I crashed. hard. Over the summer, I became increasingly distracted and unable to concentrate. I had trouble sitting still, and had to listen to music while working, which didn’t help my concentration much, but was the only thing that soothed me and made me feel like I wasn’t going to fly apart at any minute. I began forgetting things. It started with a misplaced paper, or how to do a task at work, or forgetting important chores or errands. then I started forgetting words, in mid-sentence. I began to feel like I was thinking through corn syrup, or like I couldn’t access a part of my brain I could before, or like the different parts of my brain weren’t communicating to each other. I would get lost in my own house, finding myself in the hallway or in the pantry, not knowing how I’d gotten there or why I was standing there.

I was unable to sleep. During the day I felt slowed down, unable to move or concentrate, like I had a heavy weight on top of my head. But at night, adrenaline surges would send me moving, like a motor that couldn’t stop, around the house to compulsively clean or check on things, or fidget during a TV. show or movie. I couldn’t focus on dialogue in even a short TV. episode and would finish the show, confused about what had happened. My children and husband would talk to me, and it took me mid-sentence to realize that they were speaking to me. But their words would evaporate as soon as they were out of their mouths, before they reached my ears. I would spend many hours staring into space, knowing I was miles away, but unsure of how to get back.

At the same time I was slowing down and becoming disconnected, I was also becoming more high strung. I felt like I was full of horrible, hot energy and that I would explode. I felt angry, because I could feel inside that creativity, that brilliance that had made me think I had something to contribute to the world, to academia, but I was unable to access it. Because I couldn’t funnel it into work, it was slowly destroying me. And one day, I realized that I was thinking of doing something drastic and horrible. I wanted to die.

This is part of what it is like for me to have a psychiatric disability. Life events such as having a baby, or having kids in general, are stressful. Add to that service work and graduate study, and the stress compiles. But a lot of people are able to do lots of different kinds of work and activities while at graduate school. I know many people who have published several times, who have gone to several conferences, who serve on various committees and do various service activities, and still they manage to get their qualifying exams, their dissertation proposal, their dissertation, done on time. I want to be that kind of person, and so I try. But the stress starts an already vibrating wire inside me to vibrate even more, then to swing, then to swinging around in huge, uncontrollable arcs. I crash. And so, by the end of the summer, I felt like a used-up shell, a stupid person no longer able to think, a waste of a human being because I couldn’t do any of these things without ending up in the state I was in. I was convinced I should leave graduate school. I was completely unable to read. Whenever I opened a book, I would stare at each word on the page, but they refused to become a sentence, they refused to have any coherence or meaning. I couldn’t focus on dialogue in a TV. show, or hear what my family was saying to me. I had to quit the Council, I had to quit my job. I was left alone at home, on the couch, feeling like my brain was goo and I was useless. The very things I need to be able to do to be a successful academic, such as read, understand, critique, argue, write, perform service activities and have a job, were the very things I was unable to do. I believe that is because the academic environment makes it very hard to people like me to do this kind of work, demanding so much in such a short amount of time that we work harder than people without disabilities. We push ourselves too hard because we are pushed to do so. We give so much of ourselves that we end up a beautiful, brilliant sun that burns too hot for too short a time, then collapses, dark and cold.

And all the time I was struggling with this horrible up/down, brain fog/weight on my head, the confusion and sadness, I was desperately writing, trying to salvage the situation, trying to salvage myself, to prove to myself that I can do this, I am a smart person, I can think and write. I am not a waste. And I wrote like I wrote on my qualifying exams. A series of decent, but disconnected and messy thoughts. I struggled with taking what was in my head and putting it on the page for others to read, to make sense of. I struggled with expressing those thoughts and ideas in my brain, which like an electron in some kind of Higgs-Boson cloud, would quickly shift and be lost as soon as I had pinpointed it. I wrote several very bad versions of my proposal. Two of them I sent to my understanding, and wonderful, Chair. But each time the verdict was the same: the ideas were there, but not in any cogent, usable format.

And I finally broke down and went to see my psychiatrist. For over a year I had been medication free, managing myself through various techniques I have learned over the years through alternative therapies and psychotherapy. And I was doing a damn good job of it. But when I found myself thinking of dying, with my thinking so fragmented I couldn’t remember what I was doing while I was doing it, so exhausted that I lay on the couch for hours listening to TV. shows I couldn’t understand, I realized I needed assistance. That drive to his office was like a walk of shame. I cried as soon as I saw him, ashamed that I had failed to manage myself in my own way, ashamed that I was broken and useless, ashamed I wanted to take medication. He hugged me, and after I told him everything I had been through, he seemed proud of me for being able to do it on my own for so long.

And so I went back on medication not only for myself, to calm down the anxiety, to lift the depression, to make the puzzle pieces of my brain come back together again, but to be able to read, critique, write, think, argue, to be able to work and do service, all those things I have to do in order to be a successful academic. And I kept writing, through 6 medication changes. And finally, received an email that this draft of my proposal is “successful.” With a few minor changes, it will be sent to the committee

I did it. Through all those ups and downs, through the crashes and the depression and the confusion and the irritability and the anxiety and the panic, through the medication changes and the brain fog, the lack of sleep, I did it. It took me longer than expected, than perhaps it “should,” but I f**king did it. And I’m proud. And I can safely say that in some ways I did it despite my psychiatric disability, or rather the way academia is disabling toward individuals of nerudifference, but I like to think I did it BECAUSE of that disability.

The problem is that academia, and society generally, is built for a type of homogenous, ideal being and brain that doesn’t really exist. We’re all different, and some of us are a little more different than the rest. For my specific way of being and thinking, the problem with graduate school is that too much is demanded on too tight of a time frame. Artificial timelines that serve administrative needs can be disabling to individuals of neurodifference. I am more than capable of doing those things: writing, publishing, going to conferences, working, doing service activities. And I want to do them. the problem is that so much needs to be done on so tight a time frame that doesn’t map to my way of being and it causes stress and stress creates a cascade effect. This causes me to crash and then become unable to do the things that caused the stress in the first place. It’s a vicious cycle. And it makes me feel like I’m the problem, like I’m broken, unable to perform the kind of work I have wanted to do my whole life, to be a successful person. But none of that is true, it is just the situation that hones in on me, and not larger systematic issues. It makes me feel like I’m the problem, and it masks my work and progress because when compared to this artificial timeline, and others who can work on that timeline, it makes my progress look like the opposite. I need a more relaxed timeline, and I have to simply take it, hoping that it doesn’t make me look unable to perform, or put me in a position to be dropped. There’s only so long you can take to finish your PhD, and that is my clock, as well as the student loan clock. I’m quickly nearing the cut off for how much I can borrow. Past that, it will be even more of a strain on my family to go through school. But I’m going to keep trying. Until I hit the absolute last wall and can go no further, or until I can graduate, I’m going to keep going. If you think that a more flexible timeline isn’t fair to everyone, ask yourself: is it fair to demand that I take a medication in order to work on that timeline? Or would it be more fair that I were not forced to do so, but work in my natural way on a more flexible timeline?

I don’t have the answers, or how to fix this problem. I do know that I am not the problem. I won’t deny that having a psychiatric disability isn’t painful, or fraught with problematic issues. I was in a lot of pain this year, and I had to modify myself because I couldn’t modify my environment. But I refuse to give up, and I refuse to think that I couldn’t do this, or wouldn’t have succeeded, or that I only did so because of some special dispensation or particularly understanding committee. I did this because I did this. That same brain that under extreme pressure becomes unable to perform on that artificial timeline is the very same brain that produced a successful draft of my proposal. I worked hard, and I dare say I worked harder than most people who do not have a neurodifference. I also didn’t work as hard as some individuals of neurodifference have to. In the end, that is what it is to have a psychiatric disability as a grad student: not that we cannot do the work, just that we have to work a lot harder to do it, and the cost is sometimes too high. But that also means the pride I feel is perhaps, just a little more, and just a little more justified.

Jeannie Bennett is a doctoral candidate at Texas Tech University. She blogs about disability, motherhood and graduate school at jeabenne.com.  Talk to her on twitter @Jeannie_Bennett.

This article was originally posted on Jeannie’s blog here: http://jeabenne.com/2013/12/06/on-modifying-myself-in-an-un-modifiable-environment/

Would you like to share your story, perspectives or arguments about disability, chronic illness and the PhD? Email us at team@phdisabled.org.

Image licensed under Creative Commons 3.0 from megacharm’s deviant art site.

Advertisements

6 responses to “Modifying myself in an un-modifiable environment

  1. It seems strange to say this is a wonderful piece, when it covers such distressing material, but it is. I have different circumstances, but the way you describe it is so very close to my experiences with what my docs diagnosed as “anxiety disorder and depression.” I have used some of the exact same words to try to describe what happens. The fog, the adrenaline surges, the burning energy – yeah.

    You have described something so strange in a very understandable way. I hope you do not mind, but I may use this next time I need to tell someone what is happening and my own words fail me.

    That might be a good take-away: For all of us to write or record our experiences when we can, when the illness is not at an apex. It may be helpful.

    You are strong and accomplished, and your post makes me feel less of a wreck myself. Thank you.

  2. Thank you for such positive feedback. I find it scary, a lot of the times, to share my experiences in public because I’m afraid no one will relate, and then I’d be truly alone. And I agree with you that we should share our experiences because I think it makes us feel stronger and connected, rather than helpless. It’s empowering to know that even though the environment I’m in makes me feel as if I’m wrong, somehow, and broken, that others out there are with me, and I can draw some strength in that. And yes, I agree about how the depression and anxiety and everything else, at its apex, can take away our ability to share those experiences. Words are how I interface with the world, how I know others and myself, and when I’m seriously in the midst of this thing, all those words are ripped away and it is a very frightening place to be.

  3. Thank you for writing this post. I am still an undergraduate student, considering further study, but it is good to hear someone express how difficult it is to research and study in an academic environment – what that environment and structure can do to you (for instance the feeling of time slipping by faster and faster, until you just can’t manage any more – it’s a painful thing and the extent of it is hard to convey to people – it’s comforting to hear something like that talked about out loud, so thank you) and also that it is academia that is the problem in this, not you (it definitely is not you that’s the problem.). the way academia is set up is sad, and unfair, for so many creative, brilliant and thoughtful people who have psychiatric disabilities.

    Huge congratulations for all the work you’ve done. And the successful draft. You should be proud. It’s not that you shouldn’t be proud when you don’t ‘succeed’, though. I don’t know how to express it properly.

    Anyway – you probably have many brilliant and solid things to contribute to thought, and I hope that you can continue to study and enjoy what you love. It’s important for your mental health to be protected though (although it’s unfair this is even something people have to do to be in academia, like it’s our duty or something rather than a right). I don’t know to be honest.

    ..It’s scary thinking about going into academia knowing how harsh it is for many people. I can imagine how the way it is would affect me :/.

  4. Sorry, I hope I expressed it properly – I meant to emphasise the importance of mental health and being OK most of all – I feel as if my words came across as saying that it’s more important to study or contribute, which isn’t what I meant.

    • You expressed everything just great. Thanks so much for contributing. We need to emphasise that good experiences are possible. But you’re right – we just don’t talk about these things enough. So here we are. Glad you could join us.

  5. Saw this post originally through PhDisabled on Twitter — just want to say THANK YOU for sharing your experience; what you describe here is UNCANNILY familiar to what happened to me following my qualifying exams. It took me two years to finally set aside the embarrassment and shame of feeling like I lost control and seek professional help. Those two years were thick with the fog and confusion you so well describe, years that are just a big blur in my memory now. It’s now been almost a year since I first sought help, and I am well on my way to a finished PhD dissertation. I hope to soon be as courageous as yourself and “come out” as psychiatrically disabled, too. For the moment, it’s heartening to read someone’s account that so cogently and accurately describes a pretty dark phase in my own life. So, thank you again, and best wishes as you move forward and continue to advocate for institutional/systematic changes.

Comment...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s