My chronic illness and academia

A friend happened to send an interesting article  about chronic illness and academia my way today, and it made me realize that a post on the topic is long past due.

For those of you don’t know, I have Lyme disease. I was diagnosed in October 2007 (pre-tenure), but had been ill for at least a year before that. I blog about my Lyme disease at http://gotlyme.wordpress.com (inventive title, I know :)). A special section of the blog focuses on work and illness. Lyme disease was debilitating for me, and I was on disability (part time) during part of my treatment. I am now much better, but still have relapses about once a year and bad days more often. Prior to my experiences with Lyme disease, I had a very difficult repetitive strain injury that also caused severe impairment (typing at most 30 minutes a day at first, 2 hours a few years later). This occurred at the start of my PhD and lasted into the beginning of my first faculty position.

I don’t want to go into details about those illnesses here, rather I’d like to speak about the relationship between having an invisible chronic illness and being an academic. I have had more than one person approach me asking for advice and guidance as they deal with their own illness, usually by word of mouth. Illnesses like mine (and many other chronic illnesses) are mostly invisible, and it can be difficult to find information about how to cope with them. When other academics disclose their own struggles and process (such as Elyn Saks’ article about working with schizophrenia, or Gerry Gold’s article on the social context of long term disability as an option for those who are considering leaving work because of their illness) it can be eye opening and inspiring for those of us trying to find our own way forward. Equally important is access to facts, such as the AAUP’s report on how faculty members with disabilities should be accommodated.

For me personally, one of the biggest changes I’ve had to make (and most positive) has related to my  approach to managing my time. Time management has been a theme since early in my graduate school career and I have learned never to take time for granted, how to prioritize, and when to cut back. I discuss some of the things I learned on my Lyme blog:  managing an unpredictable illness, and trying to manage a full time job on a half time schedule.

Another big challenge has been disclosure. It took a great deal of time for me to value the label “disabled” as a valid description of myself, and I have always been sensitive about it not only personally, but also with respect to my work. I never filed anything official with the university during my graduate school experience. I did not speak of my impairment during my job search until I reached the negotiation stage. I did however confront our dean at the time when I thought he wasn’t doing enough to prevent others from suffering the same preventable injury I had.  At CMU, I spoke with my department chair as soon as I had a diagnosis. However, I waited to file anything official until I desperately needed a parking permit, and one close to my building. Even then I accepted second best up until the day when I almost collapsed trying to get from that spot to my office. Finally fired up, I marched (well hobbled with my cane) straight into the deans office and demanded something better.

Although I have disclosed much of my experience at this point and freely speak of it when it seems pertinent, there is still one area that I rarely discuss: the cognitive impacts of my disability.  At my worst, I would sometimes spend more hours each week in fog and pain than out. Thanks to my very supportive husband, I would grab my computer and do essential thought-work whenever the clouds cleared and he’d take the kids so I could do so. Even so I read one journal paper (submitted before my diagnosis) in horror when the proof came back a year later. I have experienced moments in meetings with students when I could not find the words to express my thoughts; been reminded that I just said the opposite of what I meant, and experienced large black spots in my memory. These moments (though thankfully mostly behind me) were experienced as fearful signs of the possibility that I might not be able to continue as an academic. Most difficult is when they occur in public contexts, such as the difficulties I had at a talk I gave a few years back, and the program committee meeting that led to a blog post on the difficulties of re-integrating into academia after a long pause.

But what has defined the positive side of my experience, more than anything, is the support of those around me. I will never forget hearing that my advisor almost got into a fight defending the truth of my claims that I could not type. Or the day that an angry stranger mumbled about supporting the disabled as he opened a door for me when the push button failed and my hands lacked the strength (this led to my eventual acceptance of the label disabled and a related lifelong interest in assistive technology research). I have had long phone conversations with a colleague in our field who experienced chronic fatigue. I have been given a role as a collaborator when I sorely needed it. Instant Message chats galore have enabled remote and close colleagues to help me work through difficult patches and decide strategy. I have been driven home countless time by a close friend when I ended my day too weak to bike or walk, and been given writing aids (as a graduate student with RSI) and more recently teaching leaves, co-instructors, extra TA support, classes scheduled around my disability, and control over my tenure clock.

If you experience a chronic illness, I encourage you to go after the support you deserve, accept help, and seek advice. Drop me a note any time. Check out the Chronic Illness and Academia forum at the Chronicle of Higher Education. Talk to the people you trust, and get advice about when to say more. Stand up for yourself when you need it, and if people are not supportive, find other friends. Above all, know that it is possible to be both disabled and an academic, if that is the path you choose.

Learning languages

I’ve mentioned before that one of my sabbatical goals was to learn a new language (Hindi). I am not fluent, but I think I came a fair way with it, and I want to comment on the role of different technologies and approaches in our successes (and failures) as a family to learn the three languages that we tackled on this trip.

One of the most useful technologies we employed was the Rosetta Stone software. The kids loved Rosetta Stone, which we started using almost as soon as the sabbatical was approved to get them familiar with Hindi. They spent about 30 minutes at a time on it at the beginning. At our peak, this happened almost daily (after we left Pittsburgh but before we were settled in India. Eventually we hired a tutor (a wonderful friend now) to come for about an hour most days instead. The kids were far more resistant to being tutored than they were to using the software, but I feel we covered much more ground in those hours. We made up all sorts of games, retold fairy tales, played shop, and generally did our best to make it child friendly.

Hindi was a relatively hard language to learn (new alphabet, different sentence structures, and so on). Once we got past the vocabulary phase,  progress was slowish. Still, by the end of the fall we could have whole conversations in Hindi as a family. The kids were not alone in learning the language: Anind and I were trying very hard to learn it as well and we tried to speak it at meals, with our Indian driver, and so on. So between the tutoring and the daily practice opportunities, they used Rosetta Stone less and less.

The Rosetta Stone was not a pure success. It required the right context to be used — enough motivation, and not too much other support. We almost never used the German Rosetta Stone I bought, and of course the kids are far more fluent (they are immersed, unlike with Hindi, and it is a much easier language for them to learn). Use of Rosetta Stone is rare at this point, and mostly me.

You get free tutoring through the online package with Rosetta Stone, along with access to online games. The games are a fun way to practice but slow. When possible, I sign up and have a session with an online tutor. It is based on the material I’m currently covering in the software. However, they only let the kids do it when there’s no other remote participants, which is sometimes hard to find at popular times in the early stages of learning a language.

As a computer scientist, I cannot help but be impressed by the software. It is dedicated to learning language through immersion, and the authors have done an excellent job of maintaining that throughout the software and the tutoring sessions. It uses speech recognition to check pronunciation, and provides multi-media support for learning. And it works, if you put the time in with it, you learn. To my mind, it’s a success as an educational tool and an interactive tool. It supposedly has a social side as well, though as a Hindi learner I was one of few and could not take advantage of it. I’d be curious to see what it’s like.

It has always seemed such a shame to me, that learning multiple languages is not a norm in the United States. During our travels we met 10 year olds who spoke 5 or 6 languages, all with fluent ease. They never needed to touch a piece of software or a tutor. The world has become so small, yet so many of us in the United States fail to give our children the gift of understanding and the mastery of complexity that comes with learning multiple languages. Most of my swiss cousins have raised children who are bi- or tri- lingual, and without the errors that plague even my immersed children.  There is no substitute for that level of early exposure.