Tag Archives: illness

Disability, Thoughts

Life beyond science

I’ve come to realize over the years that one of the most important things we fail to do as academics is to share the reality of the priorities that we juggle and the ways we spend our time. Just a few days ago my husband and I took the time to talk about this with our son. Our ordering varied, but for both of us, family and health were among those at the top of the list, and our jobs were not first. My very top priority, personally, is sleep, followed immediately by family, because I need the former to prioritize the latter, due to my Lyme disease.

I think sometimes that our students don’t see this and we all worry about sharing that anything other than our jobs is a priority. So today, despite the looming CHI deadline, I am taking the time to make this post. I actually wrote most of it about two weeks ago. I decided to describe the day I’d just had, and spent a few minutes on it before stopping in the middle of a sentence, interrupted by something I have long since forgotten. Here’s what I wrote:

Today I am heartbroken, and angry. Distracted and busy, with many things that are anything but my job. I have a big personality when I want to, and the full force of it is concentrated elsewhere right now. That is ok, and it is as much part of me as being an academic.

I woke up this morning with a lot on my mind. So much that I popped awake right at 5:30am and had no hope of going back to sleep. Among other things, I was worried about our daughter’s insurance appeal case, which had probably been decided on Monday.

I made a concerted attempt to start the day out on a better foot, and after a nice talk with my spouse I made myself a coffee and finished reading the Sunday newspaper. I then began working on my new class for Spring 2021. I’ve been working on that now because I know I won’t have any time for it during the Winter quarter, and I’m unlikely to have much time for things once the kids start school since my daughter’s care needs may increase.

From 8:30-11, I met with students, and then had a directors meeting about the CREATE center and a mentoring meeting at 12:30. Just after 11, the insurance company called. I always take local calls because they are almost always medical-related, and handled that quickly making a plan to call back after hearing the important thing: That the appeal had been denied.

Needless to say I was very upset. My co-director kindly and with understanding asked if I still wanted to meet, and I proceeding because although upset I didn’t want to let them win or re-arrange anyone else’s schedule.

I knew the rest of the day would not involve much work of the traditional academic variety. Instead, I needed to go to battle again. I first spoke with the insurance company to find out more about what had happened. I was able to glean little from the call aside from the fact that my daughter’s case was one of 6 discussed that hour. This was our last internal appeal and our next step is an external board. I plan to use that process, but I also believe it’s time to shed light on the situation. After a conversation last night with a friend, who is going through the same appeals process with her children I was convinced that the insurance companies are more interested in making money than doing the right thing when it comes to our children’s futures.

I spent some time doing advocacy work to try to get her case attention, and helping my friend with her case, and then was interrupted by her need for care — a bad migraine and a number of spiking symptoms were making her extremely uncomfortable. 100% attention switch, fetching of supplies including hot chocolate, back and forth between that and my computer.

Another 100% switch to try to focus on my class, and a few urgent things (a paper revision and a slide deck for a funder) but I finally gave up after realizing I was wasting too much time on Twitter and Facebook and watched a movie about women scientists and then made dinner. What’s left of the evening will involve walking the dog…

I can’t tell you how that day ended. That in itself is a reflection of life as a caregiver and a parent and really any person coping with these unprecedented times. What I do know is this: in any time but especially in 2020 we should not judge the priorities we set ourselves, or others choose. That self care matters as much as all the rest, and when it is possible to do it, I will not feel guilty for doing so. And that imperfection, whether an unfinished or delayed blog post, or an abbreviated effort on a slide deck, is still worthwhile.

..., Disability

My chronic illness and academia

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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.