Brain Fade

One of the hard lessons you learn when you struggle with mental illness is that your brain is not a reliable witness. That’s really true for everyone I think, but it’s extra true when you grapple with a mood disorder. You believe, and see evidence all around you, that everyone hates you or that you’re a musical genius or that you’re desperately in love with that person (who isn’t really sure who you are) or that you’re dying of some improbable disease. But then the view shifts slightly, your medication adjusts, the seasons change, and whatever you knew for absolute certainty disappears so suddenly you’re left gasping. How could I believe that obvious untruth? What the hell is wrong with me?

Which is to say, I’ve had a lifetime of dealing with emotional whiplash, of reacting to things based on the specious data provided by my bi-polar brain and afterwards having to perform emotional forensics to determine what really happened. I’m used to not believing myself right away. I’m used to second guessing myself constantly. I’m used to feeling pretty insecure about my perception of the truth. All of which is perhaps part of why it took me so long to realize that I was, honestly, losing my mind.

I can’t pin down when I noticed it at first. 2018ish? Maybe? On or about the same time that I started experiencing unexplained full body fatigue and joint pain, my brain just started to feel…weird. It felt as if I was trying to think through mud. My brain “felt” which is a weird thing to say. Brains don’t usually feel like anything. But I could feel neurons buzzing. I could feel my brain straining, like my skull was shrinking. It wasn’t pain. I’ve experienced migraines in my life, and it wasn’t like that. My brain wasn’t working right. And I didn’t know what to do about it.

A brief catalog of things I have endured since 2018ish: I completely changed my career path twice, moving from the administrative side of librarianship to the direct public service management side and then back to a different aspect of the administrative side. I was diagnosed with fibromyalgia and psoriatic arthritis. The Trump Administration. Severe lower back pain due to degenerative disc problems. COVID. Officially transitioning into menopause, something that happened abruptly and early and which led to a complete and dramatic heat death of my sex drive and my personal sense of any value as a female human bean. The Trump Administration. COVID. I gained 30 pounds, tried everything to lose it, lost 15 and then immediately gained them back and now I’m a plus sized activist/revolutionary because I’ve Had Enough. I came to grips with the fact that I have ADHD, along with all my other bullshit. Plus, you know, life. And the Trump Administration. And COVID.

I was pretty vocal with all my doctors about the brain thing, but a quick look at the above paragraph makes it clear that I was dealing with a lot of other issues, some more immediately urgent than others, all during COVID. If you’re not sure what impact COVID had on our healthcare industry, talk to anyone who has one or more chronic illnesses. It was bad y’all. It’s still bad. Referrals take months to even get scheduled. Appointments are rigidly confined to one and only one issue at a time. Doctors don’t want to play House to your fuzzy brain problem. They want to medicate it or refer it. (And if they medicate it, it will take you months to get the prescription filled because someone TikTok’d that your medication will turn you into a unicorn and now everybody wants it.) (PS IT WILL NOT TURN YOU INTO A UNICORN!)

When the cognitive symptoms first started, I was maybe six months into a new job that I was really loving. I loved my staff. I loved working in a library branch with a team devoted to helping people. I loved my boss, who was smart and funny and who challenged me to do better. The job involved a lot of administrative work including time sheets and leave requests and desk schedules and ordering supplies that I was struggling with but working hard to improve. It was a big adjustment, transitioning from a job that I knew so well I could do it tap dancing backwards in high heels to something that felt like starting over, but I had gotten so bored with the tap dancing backwards that I wanted to challenge myself, so I did.

As the brain fog rolled in, it made those administrative tasks more difficult. One of the aspects of ADHD, which the fog kicked into overdrive, is that it can be difficult to impossible to maintain focus on tasks like maintaining an Excel spreadsheet that accurately shows when and where all 20 of the staff should be working at any particular time. Maintaining the desk schedule took hours of my time every week, time that became more and more tortured. I was constantly forgetting where I was in a task, or what I was doing. I made so many mistakes. I was in a state of constant apology. My boss and I discussed the need for me to maybe take some training on organizational skills. I found and tried to consume training videos the content of which I would forget while I was watching them.

And meanwhile, the shit kept coming. COVID hit. In a matter of days, we had to come up with a completely new service delivery model. We had to implement new health and safety protocols. I’m immunosuppressed and I was terrified, and I also needed to care for my team who were also terrified.

Like a lot of people who are neuro-spicy, I’m traditionally good in a crisis. When the world goes to shit my brain just goes oh, yeah, welcome to The Show baby. This is what we’ve been training for. And some of that definitely kicked in during the immediate weeks after COVID. But I’ve always prided myself in being a creative thinker, someone who likes to problem solve or improve systems to make them better and easier. But as I tried to call on those skills over and over again in the months to come, I became aware that that part of my brain was just… gone. I couldn’t access that program.

I faked it. I became very into asking other people what they thought we should do, playing the part of the magnanimous boss that wants to include all voices. And look, I was that person. I am that person. The best people to tell you how to do a job better are the people doing it. But I couldn’t add anything to their suggestions. I couldn’t synthesize and come up with a master vision, which is the other necessary part of being a good leader. I was living like a goldfish, only focused on what was exactly in front of me with no way to guess what was coming next.

The fog kept getting worse. I would forget things always. Things at work. Things at home. I missed appointments. I forgot to pay bills. Any “big plans” I had for projects at home or at work just evaporated. My husband would ask me to do a simple thing, and I would say yes, and then it would be gone. I wouldn’t just forget the task, I would forget that he’d asked me anything at all. 2 minutes ago. I stopped writing, though I did not stop constantly beating myself up that I was not writing. I lost my ability to read anything longer than a Tweet. Me, a librarian, who has for most of my life always had at least one book with me at all times. I tried. I would stare at the page. I would use all my concentration, only to realize that by the time I got to the bottom of the page, I’d already forgotten what happened at the top.

I stopped cooking. Cooking is something I really enjoy doing, particularly baking. But reading a recipe was torture. I would look at the measurement for something, and by the time I’d turned around to the cabinet to pull out the measuring cup I’d forgotten what I was doing. Paired with the physical back pain I was experiencing, that made standing torture I had to just stop.

Life became agony. Everything I did required a huge investment of will. I had no momentum. My brain was a dinosaur trapped in a tar pit. Everything was overwhelmingly difficult. Housework. Home projects. Lots of things were left in the dust, but on those occasions I was compelled to do them, it took everything I had. I stopped committing to things. I stopped volunteering for things. I stopped doing things.

My bipolar brain did work hard to try and help, and it fell back to its common response to depression, which is to generate tremendous anxiety. Depression is still, but anxiety is action! Depressed that you can’t write? Spiral into anxiety that you will never write again, that you’re not even a writer really, certainly not a good one, you’ve been lying to yourself for 50 years. There! You’re not doing nothing, you’re actively torturing yourself!

I kept mentioning it to my band of doctors who nodded and shrugged. The doctors said it was menopause, like that’s an answer unto itself, like oh it’s just menopause la di dah. It will either go away or it will be the new you. Or the doctors said maybe it was long Covid. Or maybe it was because I was depressed? Had I tried exercise? Or the doctors said maybe it was my diabetes. Was I managing my blood sugars? Or the doctors said, while looking at my long list of chronic bullshit that I deal with that, you know, you have a lot going on. It could be anything, or multiple things. There’s just no way to know.

Things at work got worse. My cool boss left and was replaced by a crazy boss. In my state I didn’t have what it took to deal with crazy boss, so I transferred to a new position. It was the same job, but at a smaller branch. I went from a branch with over 20 staff to one with 5, including me. I was there for less than six months, and I was sleepwalking. I kept the doors open. I kept the schedules done and found the substitutes and met with the Friends volunteer group and did all the things, but I was sleepwalking.

I missed my brain. I missed caring about things. This problem had been going on for years at this point, and nothing I tried worked. So I just sunk into it. I maintained a façade that everything was fine. Well, maybe not fine but you know, just keep going. Walk it off. I started using edibles on weekends to shut down completely. You would think that’s not the best choice to deal with your brain not working. It certainly didn’t improve my cognitive function, but it wrapped my broken brain in a warm blanket and turned off the horrible anxiety and self recrimination that had become my constant companion.

An opportunity opened in my system for a job that would have me back on the administrative side, overseeing programs for the library system. It made me a bit excited, which was a feeling I didn’t get very often. I made this choice to transfer based, I believe, on what I remembered my skills to be, but not what my skills had become.

While I own that the shit I have been going through definitely made things worse, I’m not going to throw myself on the grenade. There are issues with this job. It’s not well defined, and the description of the job I interviewed for is not the job that I’m doing. My boss doesn’t always provide me with all the information and context I need to do things well. There’s a lot of complicated blah blah blah that is a whole other blog post. But the reality is that my cognitive issues made dealing with the frustrating aspects of the job almost impossible. And it made it impossible for me to handle the impossible tasks I kept being handed in a way that ensured I covered my ass.

It blew up. I fucked up some big stuff. I fucked up the stuff because I didn’t have all the information. I fucked up because the system is fucked up. I fucked up because my boss was checked out, and didn’t give me a tenth of the information I needed to do things correctly. But I fucked up things that were easily pinned on me and that I could not deny. I fucked up because the part of my brain that would have sounded alarms much sooner was offline. I fucked up because even though I was aware that the situation was going south, the part of my brain that could formulate solutions was not working.

I can’t say there’s a silver lining to the worst year of my career, but The Big Fuckup did force me to really face what my lost brain meant. I couldn’t keep working at this job if I didn’t have a brain that worked. I started looking into going on disability. I filed for FMLA leave to protect myself for taking time off. I called my psychiatrist and told her that I needed to meet with her to fill out medical forms for FMLA, short term medical leave and ADA accommodations.

I’ve been with my psychiatrist for many years. She is the person who finally helped me face my bi-polar issues and has helped me go through the lengthy process of finding the right cocktail of meds that when working keeps me out of depression, but doesn’t push me into severe anxiety. I had been discussing my brain problems with her. She offered a lot of the doctor advice I discussed above. We made some adjustments to the medications I was taking, upping my anti-depressants. It helped a little but not noticeably.

My call to her asking for help seemed to shock her. I explained that I’d fucked up at work and it was because of my memory problems. I had to get some things in place to protect myself. I had to think about going on disability. She told me to back up back up back up. I told her what I thought I had told her many times. I can’t remember things. I’ve lost my mind. I worry that I have some kind of early onset dementia. I can’t keep going. She started going through the things we talked about, the menopause, the diabetes, the PTSD that most of us are dealing with in some way after COVID. And then she said you know, this Medication X that we put you on as a mood stabilizer a few years ago can have cognitive impacts.

I’d started taking Medicine X coincidentally at the same time my fibromyalgia was diagnosed. I needed a new mood stabilizer and this one not only helped with that but also could help manage pain symptoms. It seemed like a good decision. It seemed to help with the pain and I guess I was stable, if you define stable by the inability to go into a manic state because your brain just gives up.

With psych meds you can’t just stop taking them abruptly, so I started reducing the amount I took gradually. I was taking 4 pills a day. I cut it to 3.5, then 3, then 2. I tried to go lower, to 1 a day, and started having racing thoughts and mania, so I went back to 2, one in the morning and one at night. And gradually I began to feel better. As the medicine reduced some other symptoms started showing up. Nervous tics that haven’t plagued me in a long time have started to come back. An essential tremor in my hand that hasn’t bothered me in years has come back. But so has my brain. And I am ok with that trade.

I still got the FMLA leave protection, because I’m dealing with a lot of shit even without the brain stuff and I don’t need to be losing my job because I have to go to doctors appointments. Some days are sharper than others. I’m in the process of finding an ADHD coach to work with me on building a good organizational structure. I had ADHD before the brain fade, but I managed it ok. Not great, but ok. But now it’s been kicked into overdrive, and I need help, which I’m getting. I don’t feel the need to go on disability any more. I can do the work though lately it’s a lot of fixing shit.

Now that I’m starting to feel better I have been slowly conducting that post-mortem on the almost 5 years I lost with a mixture of grief and anger. I’m angry at the medical system that failed me; that didn’t LISTEN to me; that made me feel like I was crazy to think that I was going crazy. I’m angry at myself for not fighting harder, or paying closer attention to the timings of things, which would have helped us get to a solution faster. And honestly, as much as I love all the people in my life, and especially those closest to me, I’m angry that they couldn’t see that I was drowning. They didn’t take me by the hand and lead me back to the doctors’ offices and tell them this is who she was. This is who she is now. It’s not right. You must listen to her. You must help us solve this.

What I recall vividly from when I asked my psychiatrist for help going on disability was how shocked she was. She’d heard me talk about my issues, but in her mind I was a competent person dealing with a lot of stuff but who always managed. Discussing the possibility of going on disability to my Mom got the same reaction. How could I be considering going on disability? I could walk and talk and get myself to work and my appointments. I didn’t look disabled. I didn’t seem disabled. In her mind I was a competent person dealing with a lot of stuff but who always managed. And when I brought it up to my husband I’m pretty sure he thought I was wishfully thinking, like, I’d also like to win the lottery.

There’s an image of competence and self reliance that I’ve always worked hard to convey. It’s overcompensating, because I have been dealing with so many health problems for so long. Somewhere along the way I picked up that the worst thing a woman can be is needy. It’s hard for me to ask for help gracefully. So maybe I can’t blame them all for being surprised when I finally flamed out. I was dealing with my own really complicated feelings about loss of identity. I was terrified, and I didn’t want any of it to be true.

I was trying to solve a complicated problem with a brain that couldn’t do it any more.