“How’s grad school going?” my friend from home asked.

“I mean—I’m glad I’m trying it,” I stammered, going on about a few highlights.

“But do you like it?” she pressed.

The truth is that I’d been afraid to ask myself this very question, because I was afraid to learn the answer….

But first, how is grad school going?

There are times when I’m thrilled to be here, and I feel totally on top of things.  But then, ten minutes later, I’m miserable, and I feel like a complete and utter failure who will never be good enough.

Honestly, I’m finding it too easy to slip back into depression.  I don’t know if it’s because I don’t like grad school or if it’s because it’s time for my next IVIG—depression and anxiety, not OCD, are the first PANS symptoms to return in my flares.  But they’re also signs of many lonely, overworked grad students, so who even knows what’s going on?

I’m at the point in my recovery where it’s hard to tell what’s a symptom, what’s fallout, and what’s something that’s always been there—which makes it hard to know what to do.  My current issues are subtle but insidious, chipping away at the foundations of my life just enough to undermine it and make it more difficult.

The trouble with healing a brain is that your deficits aren’t always obvious to outsiders—or even to yourself. 

Everyone, including me, could see my brain wasn’t right when I had trouble walking and answering simple questions last year.  But now, when you see a young woman going to grad school and doing the same things as everyone else, you wouldn’t know how much I’m still struggling.

My main challenges are anxiety and executive functions (EF), which are the cognitive processes related to planning, focus, initiation, and more—all functions important for success as a grad student.  Scientists believe that the brain’s basal ganglia is involved in executive functions, which is the part of my brain that my illness compromised. So it makes sense that I have these issues.

So what do my issues look like day-to-day?

To start out, I can’t keep my dorm clean.  My mom, when she comes for my monthly treatments, will clean the whole thing, and within hours of her leaving, there’s already trash and laundry all over the floor.  My desk is littered with books and references scattered among my many supplement bottles—most of which are empty.  The fridge is full of trash, too, so I barely have room for food.

I don’t like the mess, but cleaning is overwhelming because I don’t know where to start.  It’s somewhat tied to my OCD, but it’s also a problem with initiation and having a hard time breaking down the process into steps—part of executive function.  It helps to be on the phone with someone (usually my parents) to prompt me at least to get started.

However, once I’ve made it past the hurdle of starting, I may jump from task to task: I begin emptying the trash but then notice I have dirty laundry on the chair and stop to work on that instead.  And then I start cleaning the sink—with the bag of trash still sitting halfway out of the wastebasket and a pair of pants still on the chair.  Luckily, I get all of it done eventually, despite my unconventional, scatterbrained methods.

Time Management Problems

The most obvious academic challenge I have related to executive function is managing time and having trouble getting started on anything.  Part of this is also anxiety, since school was once a torturous process when I was sicker, and I still anticipate that it will be even though I’m mostly well now.  But another part is that initiating tasks can be difficult when EF is compromised.

These days, I often end up putting my homework off until I’m uploading it one minute before the due date or printing out papers right as I head out the door because I struggle a lot with allocating time for everything I need to do. 

Another part of executive function is being able to control impulses and prioritize.  So if there’s something more exciting than doing homework, even when I’m sure I shouldn’t do the exciting thing, I’ll almost certainly give in and do it anyway because it’s more stimulating.  I often find myself still awake at 2 AM working on projects I don’t need to and regretting this decision and wondering how I could possibly be so irresponsible—and then I do this over and over and over again.

Problems with tackling projects

Recently, I had a big school project that I couldn’t wrap my head around.  I thought I just didn’t understand the material because I froze every time I tried to start, and it made little difference how much friends explained things to me.

But then I realized it had nothing to do with a lack of understanding—I just didn’t know how to break the project down into more manageable steps.  Whereas others could easily hold their ideas in their head and start working, I needed to know ahead of time exactly what to do at every step, what order to do things in, and what I needed to figure out about each point.  Once I took out a piece of paper to brainstorm and made a drawing and lists related to the project, I figured out what to do, and everything went fine.  I couldn’t believe what a difference it made!

Tips That Help Me Manage My Cognitive Problems

Many of you reading this probably have similar challenges or have kids who do.  So I’ll close with some more tips that have helped me:

• Write everything down even when you’re sure you’ll remember—you won’t.
• Set alerts and reminders on your phone so you don’t forget to do anything important.
• Use a wall calendar that you’ll see all the time to write down all of the due dates.  This helps you know when the busy weeks are and keeps you from forgetting to do anything.
• Take the time to make a list of every step in a project. It might take a while since planning is difficult with executive function problems, but once you get through this process, the whole thing will be easier.
• Ask for help—get a friend or family member to call or visit you to help you get started on an assignment or task or to figure out how to plan something.  When I was really sick, if there was a sudden change to my usual schedule, I’d have to call my parents and go over what I should do, because I couldn’t figure out how to adapt my routine.  It helped a lot.
• Have another person nearby sitting quietly to help you stay on task.  This is called a “body-double.”  I sometimes FaceTime my parents just so I can see them sitting there while I work so it’s less tempting to get off track.  It helps my anxiety, too.  I get so much more work done with a body double.
• Get accommodations from disability services. You may be eligible for extended time on tests and other services to help.  Some schools have readers for textbooks as well as notetakers.
• Have a distraction-free area where you don’t do anything but school/research—absolutely no checking Facebook or reading Buzzfeed when you sit there.  Having this level of separation helps condition you to focus whenever you’re there.
  • The moment you get tired and aren’t focusing, go elsewhere.  It’s important that you only associate the space with being productive.
• Cut yourself some slack.  Would you scold someone with a broken leg for not running?  If you’re dealing with an injured brain, or at least a brain that works differently from others, you’re facing obstacles that others don’t.  So stop comparing yourself and feeling bad about how you have to work because of your challenges.

For more great tips on executive function problems, check out The Inclusion Lab’s post: 15 Tips for Students with Executive Function Issues.

And to get back to the original questions…

How’s grad school going?  And do I like it?

All things considered, despite my challenges, it’s actually going really well.  I’ve even received the highest score in the class on my last two exams.  My issues apparently don’t impede my ability to be a good graduate assistant, either, because my supervisor seems pleased.

Contrarily, just over a year ago, after a disastrous PANS relapse, I couldn’t read my textbooks or answer the most basic questions my professors asked.  The fact that I’m in grad school at all, even if I’m struggling and questioning why I’m here, is amazing. 

I’m not always happy in grad school, however, especially when I’m not well, but I think grad school is getting better.  The main thing about grad school is that you have to accept that you’re not the standout anymore like you may have been in undergrad, but that’s okay—it’s not about what others are doing or what professors think about you, but about what you want to get out of the experience.  So I try to stay focused on that.

It’s not easy having my invisible executive function issues, having unpredictable moods and anxiety, and having to face treatments and appointments on top of the typical challenges of grad school.  But I’m hanging in there.  And I’m determined to keep doing so until I get this degree.

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P.S. I’m starting a teleconference support group for teens/adults with Lyme/PANS/AE and similar neuropsychiatric or chronic conditions. The first one is 2 PM Eastern Time (7 PM GMT) on December 8th. Another post with details on Second Saturday Strength coming soon…