I’m scared because I haven’t written anything–and I mean anything–since April 2017. I have tried, but my brain can usually only get out only a few words before the chaos of brain fog starts.
It all started when I moved down to Ames, Iowa summer 2016, the summer before starting my PhD in Rhetoric and Professional Communication at Iowa State University. I was fresh off of presenting at three conferences in two weeks.
And this is where my brain is starting to descend into chaos. I’m trying to hold it together. I didn’t even get two paragraphs in. I’m hoping that continuing to write–even if it is writing about what I’m thinking–will help me get through this. So, this is going to be a chaotic post obviously.
So, the summer went by and it was really hot. But it went by and not really any major issue other than I had a sore butt and my shoulder was really hurting. My shoulder hurting wasn’t anything new, that had started Winter of 2015 after visiting my Giraffe in Rhode Island.
So, the school year started and decided to go in because of my sore butt and shoulder pain. I also had an umbilical hernia that had arisen (Is that the right word? Sure, we’ll go for it. It is a real word) over the summer. It didn’t hurt, but I was pretty self conscious of it and knew it was ugly. But I don’t really go anywhere without my shirt on, so who cares and it doesn’t hurt. I went to the doctor around the middle of September.
On September 29, the weekend before I was going to present at a conference whose name I have forgotten, (I tried to look it up, but can’t remember the name or anything) with Dani Alexis Ryskamp and Athena Lynn Michaels-Dillon, I was called back to the doctor. I went in with the idea that they might be diagnosing me with diabetes. They had only run regular tests, so it probably wouldn’t and couldn’t be something like cancer or something like that.
Well, they did diagnose me with diabetes. And I remember trying to learn how to stab myself with a needle to draw blood so I can measure it. I had someone “train” me who didn’t seem to understand 1) how to train and 2) how the machine actually worked. They had me stab myself and draw blood, but it wasn’t enough blood. So, she put in a new strip to test my blood sugar on. And I tried with again with the same blood that I had gotten out while she was putting it on. But it still wasn’t good enough. So, she told me to wipe my finger off with an alcohol swab and try stabbing myself again. So, I did…in the same finger…in the same place. God damn, that hurt. But then, guess what! The machine had automatically shut off because the strip had been in there too long. And all of this was on the day before I was scheduled to fly off to East Lansing to present at a conference.
I had forgotten to register for the conference and only remembered on the flight to East Lansing. Thus, I was not scheduled to present at the conference, but because I was presenting on a panel who knew I was coming, I was still able to present. I wonder now as I write this if everything had really started all the way back in September. I only really started noticing it in November, but that’s getting way too ahead of the story, so back to September. I decided that if I was diabetic, I was going all-in. I was going to go completely sugar free, and very minimal carbohydrates. Every Sunday starting the week after I got back from the conference, I would cook several meals that I could have for the week or possibly month. I ended up cooking 7 meals in one day one week.
It was fun. On Saturday, I would put together a grocery list after finding recipes that sounded good to me. Then, I would order them on the HyVee delivers. The next day, the ingredients would come and I would start cooking.
Around October, my sleep pattern began to diverge from what I had been having. For lack of a better word, it switched to a bisleep schedule. I would go to sleep once I got home from teaching or taking classes, wake up a few hours later, ready and able to work on homework or cook or play games.
My days would look like this
12:00PM – Wake up to go to school to teach two classes and take a class,
7:50PM – Come home
8:00PM – go to sleep
12:00AM – Wake up and cook or do homework.
8AM – go to sleep
I felt amazing with that sleep schedule. I had tried unsuccessfully to have a “normal” sleep schedule of one long block, but that hadn’t worked. When I had tried to do that, I would generally be stuck doing nothing because I didn’t have enough energy to do anything–homework, cooking, even playing games. But this schedule worked. I remember one night where I felt like I had enough energy to go walk to HyVee (which was about 3 blocks from my apartment) at 3AM. I ended up going there, listening to podcasts, and bought a thumb brace because my thumb was giving me problems at the time. That was all I bought…at 3AM.
But then it started going downhill. For an entire week in November, I wasn’t able to speak. I wanted to, I knew what I wanted to say, but my brain just wouldn’t make words. That same week, while teaching, I found out that my aunt died of Ovarian Cancer.
My uncle and her had had a codependent relationship and my parents and I were worried about him. My parents were visiting me that weekend and, sort of ironically, we were watching the movie Ghost Town when my mom saw that she had missed several phone calls earlier that day. I looked up the phone number as we were watching and saw that it was the City Hall of Philadelphia, where he lived.
We stopped the movie and my dad called. We were told that my uncle had hanged himself the night before. The rest of that weekend was making phone calls trying to figure out what to do. None of us had enough money to go to Philadephia, nor cremate him, nor anything.
Soon after that, I started having a hard time doing my schoolwork. I would start it and then my brain would descend into chaos. I’ll try and word it another way or give an example. I would be working on trying to read an article for class and I wouldn’t even be able to understand what it was saying. And it wasn’t just the Foucaultian confusion or anything like that, it was simple ideas that I couldn’t wrap my head around.
Then, when it came time to work on my projects and papers, the same thing would happen. I would start working on it and then, my brain would just become incredibly confused as to what I was even trying to say. I worked with a group for a project and I felt horrible because no matter how hard I tried, I just couldn’t get my brain to work. I would sit at my desk staring at a blank screen knowing that I was supposed to be doing something, but unable to do it because I didn’t understand the complex process of it.
In the beginning of the semester, I was turning them in a week or two after they were assigned. But in the end, I was barely even able to get my papers done.
The brain fog (as I call it) started randomly, once every few weeks, then once every few days, then every day. I believe that forgetting to register for the conference was one of the early examples of brain fog.
Then, several times in November and December, I would end up walking in slow motion. That was the only way that I could describe it at the time. No matter how much I wanted to walk faster, I couldn’t move faster than a person who is walking on very thin ice and is about to fall not only on their butt, but through the ice. By January, I was having it every couple of weeks. By February, I was walking in slow motion every couple of days. And then March…March…the month that will live in infamy.
I got sick during Spring break, which was the first week of March. It was a cold that knocked me completely on my ass. And when I “got better” from the cold, the slow motion walking was every day. And something new had joined it, a heavy feeling. I liken it to wearing a 500 pound suit of armor everywhere you go. Imagine lifting your arms to eat, walking a mile and a half on campus in that suit of armor. There were several times where my parents would see me have one of my heavy episodes where I couldn’t even lift a piece of pizza to my mouth.
In March, I found out that I was accepted into a conference that only selects 500 participants from around the world and was going to be held in Scotland. I was elated and so honored to have been chosen. In January, I had two Proposals for chapters accepted–one with Alyssa Hillary in the Routledge Reader for Disability Studies in Education and one in a book about monsters.
As I was trying to write the monster chapter, my brain fog hit really hard. I did the best I could, but I don’t think it ended up making any sense. The premise that I was making is that what defines a monster is essentially a disability. Frankenstein was a monster because he has several disabilities. I’m not explaining it very well right now. I’ll try again. I critically look at the definition of monsters (as put forth by an article that someone wrote) and show that it corresponds with disability. Then, I use a case example of Frankenstein to illustrate it further.
All I know is that it was several weeks late and I didn’t feel good about it. I did try my best, but that didn’t matter. I had had such a difficult time writing it that I hadn’t been focusing on my schoolwork. And then my final papers were due. My parents were worried that I wasn’t going to be able to finish the year.
I would get home from school and just crash, staring at my tv or computer, unable to process anything going on around me. Reading a simple article on Yahoo! was impossible because my brain couldn’t process what was going on.
Eventually, I needed to add absences to my list of accommodations with the disability office because I was missing classes due to my heaviness and brain fog. I was missing classes nearly every other week because I would get done teaching and have absolutely nothing left in the proverbial tank to go to class.
So, at this point, your probably wanting to know about doctors. After the heaviness started in March, I went to the campus health office to see the doctor who had diagnosed me with diabetes. I told her what was going on and she did an A1C test to find out if it was the diabetes…it wasn’t.
She then thought that it might be depression, so she upped my antidepressant medication. Two weeks later, the heaviness continuing to get worse, she increased it to the highest dose and put me on another antidepressant medication.
Two weeks later, she recommended I see a psychiatrist to figure out if it is depression. He took me off of those and put me on venlyfaxine highest dose. It didn’t help. The psychiatrist decided that whatever I have isn’t caused by the depression.
It was then around this time that they found out that I had iron deficiency anemia. So, then they thought that my heaviness and brain fog was related to that. I went to see a hematologist who was convinced it was celiac disease. I had 4 iron infusions, a colonoscopy, endoscopy, and cameraendoscopy and a lot of blood work done. I didn’t have celiac disease. My iron was now normal and it didn’t help my fatigue at all (by that time, the doctors were helping me find medical terminology for what I was going through and the heaviness was fatigue).
I started seeing a psychologist because I was having such a hard time dealing with all of this medical stuff. He was amazing! Within the first few sessions, I found out that he had also had medical problems and one of his specialties is helping people who are having medical problems.
Remember back when I was accepted to present in Scotland? Well, that was coming up. I had ordered the plane tickets and registered for the conference. I had my presentation all ready. My parents and I had a heart to heart where they asked if I thought that I could handle going to Scotland. I said I didn’t know, I thought I could. But the night that we had that conversation, my fucking apartment flooded. There was standing water through nearly my entire apartment. Both bedrooms, the bathroom, part of the living room. My clothes soaked by a broken bathroom pipe in the apartment above me.
I woke up to being rained on…by brown water (albeit most likely rusty). Oh, and did I mention that the next day, I had to start my colon cleanse for the cameraendoscopy? I don’t think I did, so yeah. I had to starve myself, take miralax that makes you shit buckets, all while high powered fans are blowing through the entire apartment making it sound like a gods-damn airfield (may be a bit of an exaggeration, but still).
My parents got down to Ames to see the damage and as soon as they came in, they started having allergic reactions and were disgusted by the smell of the apartment (Hint: soaked carpet doesn’t smell good, so don’t do it). We needed to go to a hotel and I went through with the cameraendoscopy and it came back without any information.
So, I had to cancel my Scotland trip. It took several months to get my money back, though. I never got the money back on the conference fees, though. They took them even though I couldn’t go even if I wanted to because I had to deal with my fucking apartment.
During the cameraendoscopy, I had a long talk with my parents (In case your wondering, you swallow a giant horse pill that is a camera and you just relax and not eat for the rest of the day) about what to do. I couldn’t stay in my apartment. And honestly, I had barely been able to finish spring semester. So we made the decision that I was going to move home to focus on going to doctors and getting me healthy.
Now, here’s the real disgusting kicker. Remember all of those procedures that I had to do for the hematologist (cameraendoscopy, colonoscopy, endoscopy, every appointment, iron infusions, etc.)? Well, the Iowa State Health Insurance plan I was on only covers Iowa State University Health Center visits. Yep, that’s right. I now had to deal with trying to figure out how to pay for several thousand dollars in medical expenses because my insurance company doesn’t cover crap.
So, I spent two weeks with my parents–the two weeks I would have been in Scotland, mind you. Prior to heading up there, we had separated the keep stuff from the throw stuff. A lot of my clothes had been disgustingly soiled and smelled horrendous because of the heat and moistness of my apartment. Well, we got back after the two weeks and it still smelled terrible in the apartment and they had moved around everything. And not only had the property manager moved around the keep and throw stuff, but they had put them in the same piles.
So, we ended up moving me back to Coon Rapids, it was pretty easy because I had to throw most of my stuff away because either we had to throw it because it was gross to begin with or gross after the fact. I got an insurance claim because I had renters insurance and I got back a lot of that money.
So, I had to leave Ames, I had to leave the psychologist who I really liked who understood what I was going through.
My brain fog and fatigue were horrible and getting worse. My dad helped me out by figuring out the medical bills that I had incurred. He got them to write off most of the bills, but I still had to pay several hundred dollars, but that’s better than the several tens of thousand they had charged.
My days consisted of playing video games, watching TV or movies, and reading. But then the fatigue and brain fog made it so I wasn’t able to do any of that. Right now, it’s a “good day” if I can focus enough to play a game, watch a movie/tv show, or read with my ears. Most days are not good.
I have been to the Mayo Clinic and every doctor decided that they would not treat me because I’m too fat and I need to lose weight–so have I thought about bariatric surgery done at the Mayo.
They have thought it was:
- cancer – nope
- crohns – nope
- celiac – nope
- low testosterone – nope
- low iron – nope
- depression – nope
- poor control of sleep apnea – nope
- cushings disease – nope
- addisons desease – nope
- the list goes on…
- 42 doctors worth of ideas
So here I am, having written the most I have written in over a year and a half. I have something going on. Not one of the 42 doctors know what is going on. Each has essentially said, “Somethings wrong, but I don’t know what.” I have no hope that anything is going to work because nothing has worked.
Cancer and AIDS treatment doesn’t work 100%, but it gives hope. I have no treatment options. They are treating symptoms. I’m losing iron, I’m losing testosterone, but they don’t know why. Not a single doctor has any clue what is going on.
I want to leave it off with this. I went from the most productive thing I did the past year was presenting at about 20 conferences, writing chapters for books, and going to school to the most productive thing I did this year is not kill myself.
I’m done writing this now because I don’t think I have anything else to say. And I’m probably not going to be able to write another thing for I don’t even know how long.