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I am not a superhero

Angel Ackerman Leave a comment

I have been trying to write this blog entry since late Thursday– and I have failed to find the time. Each time I approach the task, I find I have a new take on what I want to say.

I have lost my footing.

Eva warned me it would happen. I don’t understand it, and I can’t articulate it well. The closest thing I can say is that I realize that had rigid systems in place to keep myself together, and now my atittude toward those systems is more fluid. That leads me to have a more flexible approach to those systems, making myself believe I can function without such structure, and my productivity falls apart. Or, perhaps another way to put it, the more I recognize the patterns and behaviors that drive me, the more I interrupt them. This makes me calmer, but eradicates my ability to get work done.

Or very simply: I work like I’m in the midst of a manic episode or I don’t work at all.

Yesterday I started realizing all of this, and I thought, “I am not a superhero.”

I don’t know if that makes sense to anyone else, but in that moment, I broke down and cried recognizing that all the jokes other people had made about my capacity to do all the things were true. That is was not normal to approach work with the urgency I did/do. That I performed at some ridiculously high frequencies, that weren’t healthy, and I don’t know if I can do it anymore.

My superpower has always been innate time sense, and I feel like fading away.

One of my dear friends sent me this email responding to a blog post from earlier this week, which I am quoting here for future reference in my own world:

I have no doubt that adderall works for you; there’s a different level of calm in you when you take it. It’s hard to describe from an observer’s point of view, and many might not see anything different, but in borrowing your own image of the filing cabinets, it’s like instead of all this frantic opening and slamming of filing cabinet drawers going on in your head, with some files just landing in the air or on the floor, instead there’s a different set of office workers calmly opening and closing drawers as they file thoughts and ideas away — productively and with a quiet focus, but still getting the job done faster and more efficiently. Not sure that makes sense, but I think those closest to you notice it.

This morning I received another email from a friend who works in the psychological field who, unbeknowst to me, has been reading the blog. She commended me for my willingness to embark on this journey on this potential disaster train.

To top off my adventures with potential undiagnosed ADHD, I reached out to an old friend about some emotions I’ve been having– yesterday was my 27th Wedding Anniversary after all and my estranged husband seems to have really found himself (I am truly happy for him)– and the old friend and I ended up in an argument which made me cry more, right after I got this email from Susquehanna Service Dogs:

Thank you so much for joining us for your Meet the Dogs session and also for your patience as we conducted additional evaluations. I’m sure this waiting period has not been easy.

After reviewing your session and our evaluations, we have determined that there is not a tentative match in the group of dogs that you met.

So friends, that means South and I did not match. I have to trust the process on this one. South was adorable and soft, and smart– which means that hopefully all the future dogs I meet will have the features of Ms. South, and that if I loved South, I will find the future matches even more of a fit. On a practical level, it’s a relief that the process has been delayed. The reality of taking a month off during the college semester, right before the Greater Lehigh Valley Writers Group Conference that I chair, and when Canyon, the cat who formerly lived under my bed, has made such progress… it’s a lot. I don’t think I realized how close to having a dog I was, and once I get that match I have four months to prepare financially. That means I will lose income, empty my savings account and add a member to the family with minimal time to prepare.

On a medical level, this disappoints me. I have been struggling lately and might be so bold as to say I have been in a period of decline. My neurologist put me in for physical therapy, and if I can get on their list before the end of the year, I will do it, but the reality is I can’t afford to do physical therapy once my deductible resets.

Today Eva and I went to the Nazareth Farmers Market to hear the delightful Larry Sceurman tell Halloween stories… Hopefully, that will be my tale for tomorrow. We also went to Barnes & Noble yesterday to look at the planners, and we each bought one. That should be an entry.

The Day Has Come

Angel Ackerman 1 Comment

In the early days of exploring how to stop the fire raging in my brain, I mentioned that I firmly expected to be prescribed an SSRI.

The day has come.

I handed it my complex spreadsheet to my shrink-by-proxy, and the surprise on her face said a lot. The doctor had already made his recommendation based on the assesments from last week– so I’m not sure I understand the point of collecting all that data.

He gave me a choice of taking 50 mg of Zoloft for 2 weeks, followed by increasing the dose to 100 mg for two more weeks or doing six weeks at 50 mg.

They are concerned about my scores on the screenings for anxiety and depression.

If we could have ended the appointment there, I would have remained agreeable, even though several of the potential side effects of this drug could make other symptoms worse. Apparently, one common side effect is drowsiness and fatigue, something I currently struggle with due to my history of anemia. And dizziness, great for someone with a history of orthostatic hypotension. It may cause shaking and tremors, and my hands already shake. And it could cause problems with my sleep and sex drive. And I’m a monster if I don’t get my sleep.

But I’m willing to do their experiment…

But I got angry in the appointment and had to hold back my reaction. My practitioner went into therapist mode, and suggested I should be in regular therapy at least once a month. I know and understand my issues, I told her, but I struggle to get past the reaction I have to my triggers. And I told her about how I woke up in a wonderful mood but it quickly disappeared when I saw I got my paycheck. It was exactly what I expected but it still made me anxious and I had to look at all my finances. Yet, I helped my daughter buy a new vacuum without a second thought (because she agreed to pay me back by buying groceries– which I tend to not do because everything is so expensive).

She suggested I make a strict budget and adhere to it because it would make me feel better.

If any of you know me, you know how ridiculous that it. I have lived under a strict budget that goes six weeks out for the last 25 years.

And now I’m angry for the first time in weeks, not frustrated or overwhelmed, but angry.

I don’t know what happens next, but I am feeling a tad misunderstood, which is common in our medical system and I will have to have more patience and wait it out and prove my point with data, not emotions.

No one is even considering that on the four times I took Adderall, all of those symptoms went away, and I slept better than ever.

They won’t consider that until they rule out anxiety disorder and major depressive disorder.

The Dave & Buster’s revelation

Angel Ackerman 1 Comment

My Sudafed is wearing off. These last two weeks of severe allergies have been exhausting and maddening as I drown in phlegm. I took my Zytrec, my Flonase and Sudafed this morning.

I learned at 9:15 a.m. that in order to make my 11 a.m. social commitment at Dave & Buster’s, I would need to accompany Eva to two clients and sit in the car from 9:45 to 10:45.

One thing about me: I can be really flexible, but once plans are made, I don’t handle change well. I am slow to recalibrate my thinking in the face of change. I had already threatened to back out of the social engagement, but now it was too late, and I would be a jerk if I had said I was going to be there and then not show. There were a limited amount of tickets, and someone else could have gone if I decided not to.

I love Dave & Buster’s, but I don’t do well in social environments. So the promise of some of my favorite arcade games– including a version of Hungry Hungry Hippos where you sit on the hippos and have to shovel the balls in their mouths– forced me to go. And more often than not, I force myself to social engagements despite social anxiety because I want people to know that I would like to support them or spend time with them.

And sometimes it can be fun.

At this point, Eva looks at me, and somehow we get to the idea that I could use a dose of Adderall. “You’d be doing me a favor,” she said. “I haven’t taken mine in more than a week, and I shouldn’t take a whole one for my first dose.”

So we split it.

By the time we got to the arcade (and I got to pet some dogs on the way), I was calm and not antsy about things. Eva came along to play some games with me, and I noticed they had removed my Hungry Hungry Hippos. I played some games, had some food, and even asked one of the teenagers to play Mario Kart.

Now, here’s the interesting part:

I struggle playing video games. My heart races and I get really anxious as if the games had real stakes. I’m really uptight about it. And Eva doesn’t like to play with me, because I’m too competitive and I get grumpy when I don’t.

Today, I played Mario Kart and enjoyed it, without stress, carrying no physical angst of the competition. I didn’t care if I lost, and even more shocking, I felt nothing when I won.

I felt no different whether I won or lost, either way it was just good fun.

It’s almost 5 p.m. now and my blood pressure is 110/69.

Every day it gets easier to get distracted

Angel Ackerman 1 Comment

My daughter has ADHD. She is medicated, and I can see the difference medication makes. We had no clue she had ADHD until the pandemic made her structured school life fall apart. It was like someone took her brain out of her head.

But looking back, I see some behaviors in her childhood. When she was a baby, we had to swaddle her so hard she couldn’t move at all or she would wake herself from sleep fidgeting.

Any diagnosis of clinical ADHD requires childhood presentation– and it doesn’t have to be diagnosed in childhood but there has to be some evidence that it existed in childhood even if it is a parent’s recollection or a note on a report card that says a child can’t sit still.

If you have ADHD, you get easily distracted and can’t finish tasks.

Can we take a look at that?

For those of us born in the 20th century, we had less to be distracted by. When my mother plopped me in a shopping cart, she did not hand me an ipad. I sat there. Doing nothing. Our parents didn’t schedule us for lessons or playdates or activities. They tossed us outside. My parents didn’t play with me. If I was lucky, my dad would play a half-hearted game of Uno with me while he watched the Steelers on television over my head. And no one included children in conversations or decisions or asked us what we wanted for dinner. We were told.

We have two television channels. Sometimes three– ABC, NBC, CBS. On a really good day, we also got PBS and I could watch Sesame Street. And we had to wait to see what happened next: daily for soap operas, weekly for episodic television, a month for magazines or comic books. We were trained to wait. Nothing happened instantly.

I can remember a world where you had to wait for the clothes to dry on the line. Or wait for the food to reheat in the oven. Or wait for access to a telephone or a response to a letter. If you had a pen pal overseas, you never knew when the letter would arrive.

I lived in a rural area of Pennsylvania growing up. The Slate Belt. It was a five mile drive to the little family owned store that was more like a bodega than a true grocery store. We had to drive twenty minutes to get to the Laneco or the Shoprite. We had to drive 20 minutes to get a bottle of NyQuil. A hospital? Easily thirty minutes.

Want to visit a friend? No one lived within walking distance.

When I was young, our only access to new music came from the radio. My mother had an eight-track player and a record player (and I was not allowed to touch records). I remember the first car we had with a cassette deck. My first exposure to compact discs came in college– my roommate had a CD player.

You had to wait for a song to come on the radio. And if you didn’t like the song on the radio, there wasn’t really anything else to listen to because only so many radio stations existed in the area. And each station played different styles of music. Same with TV. And movies– you had to catch them in the theaters or you missed them.

And then VCRs came out. I remember when the Sears catalog first started selling movies on videocassette. For $100 (and this was in the early 90s!), you could own the new Batman movie starring Michael Keaton. And they didn’t offer it until about six months after it left theaters. That’s why movie rental became a key element of our entertainment consumption. For $5 you could rent the movie for a night. But sometimes you had to wait to get it because other people got it first.

(Heck, we had to wait to talk to our friends– no texts, no phones in our rooms, and we shared the same phone number with everyone in our house.)

Today, I listen to music on Spotify and skip songs I don’t like. Sometimes I spend an entire car ride listening to only the first 30 seconds of every song that comes on. Sometimes I can’t find anything to watch despite six streaming channels, and other times I find myself compulsively watching a show because I have to watch all of it before I start a new show. This was a huge problem with Sister Wives because after five or six seasons, I couldn’t stand it anymore but felt committed.

When we sat down to watch television or a movie when I was a child, we didn’t have an iPhone to buzz or social media to lure us away.

When we needed clothes or shoes, we had to drive to a store and find them. And sometimes we had to check multiple stores. And if we needed something unusual, we had to find the store first. Now, we just go online and have everything and everyone at our fingertips.

While today’s kids have fidget toys, I can tell you that most of my notebooks from school have other items in the margins. Not doodles like a normal kid, but often notes for stories or observations about teachers. Was my own brain my fidget toy?

Just thoughts on a Saturday morning.

Not looking for a mental health diagnosis, I’m seeking understanding and relief.

Angel Ackerman Leave a comment

In many common injuries, and with certain illnesses and diseases, clear trajectories and treatments exist/are followed. I think in reality, nothing is ever that simple due to all the quirks that make us all the people we are.

Last year, I asked every practitioner on my care team how they felt about Valium.

Even on my beta blockers and other blood pressure medication, my heart would have these periods of elevated heart rate, even as my blood pressure was under control. And when physical circumstances coincided with these events, such as muscle pain and discomfort from too many hours at the restaurant, I would find myself taking triple my normal recommended dose of baclofen. And it didn’t relieve any of it.

So, I wondered if a low dose of valium could be a breakthrough med to relax my muscles and my heart rate. But no one on my team was comfortable with an experiment like that. I got on a list to speak to a psychiatrist. A year later I am still on that list.

A recent experiment with a dose of Adderall showed that I may respond to stimulants and/or that I have a touch of ADHD. I set up appointments with my therapist and my doctor to discuss. I got a referral to a new in-office case manager who can work with patients and report to the psychiatrist so family medicine can prescribe medication.

Earlier this week, the case manager who works for my primary care p behavioral health matters called me. She said she would talk to the psychiatrist whom she works with on my behalf, but already in that initial conversation, some of my complexities popped up.

She called me back Wednesday morning and asked if I could come in that same day or Thursday as she had time scheduled with the psychiatrist Friday. The psychiatrist recommended some screenings to give us some more information and a letter from my current therapist — whom I have been with for the last 15 years.

That in itself is hard to believe.

So God Bless him, he wrote me a letter and emailed it to me. With minimal notice.

I walked into my primary care physician’s office and, because this case manager is a new addition to the staff, they have her tucked in this odd, closet-like room in the back corner of the practice. Which had no windows. And she lit with a tiny desk lamp. Which might make some people feel cozy, but I kept thinking, “We are in a closet. In the dark.”

I screened higher than I would on the depression screening. (Which today I would do significantly better on because my good mood and hope is back– so of course that led to a mood disorder screening, which suggested I might exhibit some bipolar symptoms.) I scored “high” on the anxiety screening. And I do show symptoms of ADHD but not enough for formal diagnosis and no clear childhood presentation.

Remember– I didn’t receive medical treatment between ages 5 and 21. Except for physicals and immunizations required by law for public school and those were administered by a semi-retired doctor around the corner who only accepted cash. And this was in the 1980s: things were different.

“Did your teachers or counselors notice anything?”

Ummm… schools for GenX did not have counselors. Remember all those memes that circulate around January 28: They put a teacher on the space shuttle, shot her toward the moon, and every school age child in America watched her blow up LIVE on television. Then, they shuffled us back to our classrooms (because at my school we watched it as a group in the multi-purpose room like an assembly) and pretended it didn’t happen. I was in fifth-grade. I was almost 11-years-old.

I think every GenX (and Boomer child) understood that we were expected to sit still, do our work, get good grades, and if we didn’t the school and/or our parents would punish us– and the school could even hit us if necessary. My parents never hit me, but my mother was/is the queen of silent disappointment and perpetually pointing out individual flaws. My mother dropped out of high school, but she never hesitated to make her first statement about my report card to be about the lowest grade.

“Why did you get a B+?”

A B+.

Couple that with the childhood trauma I lived with at home– slight food insecurity, sporadic but frequent domestic violence events or risky behavior from my parents, alcohol abuse, etc.– school was my safe place. My teachers nurtured me, educated me, (sometimes even fed me and protected me) and listened to me. I would have done anything to make sure my teachers would not be disappointed in me.

So I was the perfect student. But I talked. And I often spoke inappropriately. And despite my good grades, I struggled with studying. Repetition and lots of notes are still the only way I can learn new things.

And the organization issue? Developing systems not to forget or overlook things? I had a very unpredictable household. I had to keep myself together. And my mother loves everything clean and in its place– if I left something out of place in the common areas of the house, my mother would pile it on the stairs for me to take to my room. And if I didn’t take it up, she would nag me. And if I still didn’t take it up, she would. And when she did it, she would often clean and reorganize my room while I was in school.

And if we’re looking at my borderline results for ADHD and comparing them to other brain issues, we have to consider how symptoms of depression and anxiety overlap with ADHD. And how especially adult women get treated for a mental health condition when the issue stems from neurodivergence. So am I manic– or am I hyperactive/hyperfocused? Am I depressed– or am I in a burn-out phase? (And I would add how do these correspond with hormonal cycles. When I was traditionally ‘fertile,’ I had great mood and energy, when I am approaching menstruation, I crash.)

And fatigue is also a symptom of everything. I have a history of anemia, which causes fatigue. I have a chaotic sleep schedule, which interrupts my routines and causes fatigue. I eat primarily vegetarian vegan and my B12 is on the low side of normal, is that causing fatigue? I perpetually overschedule myself. This causes fatigue. I think if depression were causing my fatigue, I would be more prone to not get out of bed. I always drag myself out of bed on time.

So, in the end, it sounds like this case manager wants a mental health history of my biological father to be the determining factor on the ADHD issue. Problem is he’s been dead for like twenty years. His ex-wife whom I knew for all of the time I knew him, also dead. My biological half-brother, I’ve never spoken with them. The few people who friended me on Facebook who share his last name and said we are family– I’m not even sure who they are.

And then there’s the issue of trauma.

I have experienced a lot of different types of trauma from the unstable environment of my childhood, a period sexual abuse by my grandfather that could have escalated had I not made the decision to avoid him, and multiple experiences in hostile work environments. (One boss who randomly fired me after recuiting me for the job to hire a friend, One boss who threw things at me. Another who made me constantly fix her personal failings. And the final one: she was an all-out tyrant.)

I even mentioned to the case manager that I had spoken with my therapist on one point about why I ended up in so many of this situations: Was it me? And the case manager rephrased some stuff I have probably heard before, but didn’t really make sense until now: You will be more prone to ignore or not notice red flags. And that made total sense. That‘s how people end up repeating cycles. You can’t recognize the subtle signs and once you are knee-deep, you rationalize, as in “the devil you know.” Or, in the case of some family cycles, the child of a drug addict might think some overconsumption of alcohol and behavior related to that is okay, because it’s “just beer.”

Note that none of this addressed the fact that I also live with a mobility disability. And my medical issues– which I am considered prediabetic now and had gestational diabetes. I have always had a strong reaction to sugar and less reaction to caffeine and alcohol. And I also react to certain chemical flavors. (I would love to find out if I react to Red 40.)

As a woman with a mobility disability, I will be extremely hesitant about any SSRI that list side effects as weight gain– I have worked really hard to lose 12 pounds and need to lose at least 20 more. This is not due to vanity. This is due to risk of Type II diabetes AND the fact that more weight will put more stress on my body that already struggles to move.

Anyway, the case manager is meeting with the psychiatrist today to discuss my case notes. If I had to guess what they will suggest, I would say they will probably try to treat my anxiety with an SSRI and refer me to a trauma therapist to explore PTSD. And I suspect they may hint at depression, or even bipolar, expecting to treat it with whatever SSRI they pick.

But I think the constant interplay of some behaviors being driven by rumination or compulsion (“I must do the dishes if the bin is full”) and my avoidance of minor, personal tasks (I struggle to put my laundry away, every time, and I’ve never developed a system) and so many other things like:

  • focusing on projects I like to the extent that I won’t stop until I’m done
  • struggling to start projects I don’t like and giving in to every distraction
  • doing several things at a time and sometimes leaving some half-finished (moving into my office)
  • lacking proper mood regulation
  • obsessing over procedure, routine, documentation and details on items I deem important
  • missing details or skipping steps on things I cannot get emotionally invested in
  • writing down tasks in 5-6 different formats while doing them as to not forget and to not worry about forgetting
  • sharing and writing down important or “pretty” numbers
  • food issues: aversion to textures, difficulty motivating myself to eat or eating too much
  • inability to recalibrate when faced with unexpected change
  • must redo entire household financial plan 30 to 60 days out every time a purchase more than $100 is made or if receiving income in that range
  • pausing in the middle of simple tasks to complete a more appealing task (I picked up my phone today while putting on flip flops and left my foot half-inserted into the shoe. A flip flop!)
  • monitoring medical information more than necessary (Blood pressure: sometimes once a week, sometimes three-times a day; Weight: at least twice a day.)
  • unable to ask for help and will instead take on large projects and complete them alone
  • feeling worthless when I do not meet my goals, no matter how big or small
  • high level of rejection sensitivity
  • always making decisions based on my “gut.”

These make life/diagnosis complicated.

I have spent about two hours on this post. It is 12:30 p.m. I have not eaten yet today. I need to pee. Because of the SEVEN medical appointments I had in the last two weeks, I am behind on some projects due Oct. 10.

And tomorrow I have a business road trip.

And Sunday, I am meeting new friends for tea.

So I need to get shit done…

Meet the Dogs

Angel Ackerman 4 Comments

Yesterday, I met the dogs.

Today, I woke up from a terrible anxiety dream for the second time this week.

The first anxiety dream had me working in the newsroom again and I was behind on stories because of my other jobs– and I missed a council meeting because of job conflicts. I considered quitting one of the other jobs and remembered the newspaper hadn’t paid me in a long time. (Yeah, about 18 years.)

This morning I woke one minute before my alarm from a dream where I was traveling, and I was attending some sort of Asian-themed conference in France. I suddenly found myself without plans for dinner and thought I would visit a nice restaurant. And at the last minute, I remembered my traveling companion M was in the hotel. I opened my phone to text and invite him and none of the apps would give me his number. I took out my iPad (I last had an iPad when they first came out, it was a first gen) and it wouldn’t work either. And then some guy tried to steal my iPad, realized how ancient it was and gave it back to me.

And then I got up and walked to the hospital for my bloodwork.

This is what happens when you overschedule, have been life events, and stuff happening.

So, I came to the magic table at Panera to write down my thoughts about the dogs.

We left around 11:20. It’s a 90-minute drive to Grantville, where Susquehanna Service Dogs has a beautiful training facility. Our appointment was for 2 p.m. but when traveling long distances for important appointments, I leave wiggle room for traffic, accidents and construction.

On this particular journey, we always stop at a certain Sheetz before Route 81 that we never remember where it is until we almost miss the exit. We stop here because it has a wall of icee and smoothie flavors. On this particular day, this is extra important because Eva has an ear infection. It is the same exit for Eva’s favorite Girl Scout Camp, Wood Haven.

We always think maybe we’ll stop somewhere else or visit something, but there’s not much out there.

But Eva got her icee. I probably should have gotten gas, but that place is always crazy. I still haven’t gotten gas, and that’s on my mind.

We arrived at the facility early. I checked my email and answered some business messages. We got out of the car and went to the building at 1:45 p.m. We went into the classroom at 2:05 p.m.

I met a whole panel of employees. Many of whom I’ve met before, some were new. The head of the agency was there. Everyone had tablets and paperwork. They asked me about my health, my life, and we reviewed all the tasks that I requested.

And then we got to meet some lovely yellow labs.

This process is long, and weirdly precise. They’ve had several weeks of people meeting various dogs. And they take notes on every interaction to try and match the person with the right dog– personality, energy, brains, willingness to do the tasks needed. If I match with one of these dogs, they will tell me I matched in about a month. But I won’t be told which dog. They train the dog for your jobs before they tell you who it is. Because it could happen that a dog couldn’t learn an important task, or that another dog was better for it. Or maybe a dog completely washes out of the program.

There’s a lot of moving parts.

And as someone who’s worked with animals my whole life, volunteered in cat rescue and dealt with/helped rehab difficult cats, and learned about dogs and dog training from my daughter and her business (and I inadvertently trained a chicken alert dog!), I get it. I trust them to know their dogs and to stand behind their work.

I met four dogs. They use the information from those four dogs to weigh options in the future if this doesn’t work out. So even if this doesn’t come to fruition, it helps get me to the best dog possible.

And man– looking at these videos I feel so old and frumpy. I hate watching myself walk, and I had frumpy even more.

I did attend the session with no muscle relaxers in my system after a long car ride. I wanted that dog to interact with me when I was more prone to need help.

Dog 1: Marlin

Three out of the four dogs were large and male and from the fish-themed litter. Marlon was the name of the local police officer who would come break up the fights when my mom and dad would have violent fights.

He was big, but not huge. He did his job well, had his basic obedience down. His only interest was food. He didn’t really want to interact with me socially, he actually back away a few times. But he did what he was asked to do. When we walked together, his heel was a tad drifty.

Dog 2: South

She was the oldest (by two weeks) and the only female and from the Wanderer litter. South is also cardinal direction associated with fire and creativity, but I can’t pick a dog on my witchy ways. At first I thought her name was Sal, then I thought Sol, like Sun. But when they said it again, I realized it was South.

Angel, a trainer, and SSD South

She had a bright pink collar. That’s my business color. And when I touched her– she didn’t feel like a lab. She felt soft. She was like a stuffed animal I wanted to cuddle. She came out and greeted me. And she was excited to meet me and interacted with me more than looking for food. She prances when she walks. She has a really nice gait. When we didn’t tell her to do anything, she sat down and focused on the treat pouch. When we still didn’t ask her to work, she flopped down on the floor and waited.

And she was small. Compared to the boys. I liked that about her. Some of the trainers said some people found it hard to treat the smaller dogs because you had to reach down. And her heel was tight– so much that when my treat pouch shifted she followed it. And because of that I thought I was failing her, when it reality, the treat pouch had moved. And when we were sitting and it came time to treat her, she patiently put her head in my lap instead of getting pushy like the boys.

They asked if I could take a dog home today, fully traied, who it would be. I said South. Eva said South.

Her small size would make my life easier with the strange and crowded types of public access we might encounter. And there’s a good chance this dog will end up on a plane or at the very least a train. But her mellowness when we weren’t working is great for my office days. And I believe the incident with the treat pouch shows she can walk on the right. That’s the main task we need.

Dog 3: Skip

My father’s brother was Skip. So another dog with a name from my past. And another fish. He was massive and a drooling mess. And I was told he was not a candidate, but they were giving him a chance to learn and practice by meeting me. He had me covered with drool. He was the biggest dog. And he had so much energy and pushiness. And he struggled with basic commands.

Dog 4: Pike

Smaller than Skip. Bigger than Marlin. Another fish. High energy. But fairly patient and responsive. If I needed a big dog, he would be my choice.

The ADHD rabbit hole

Angel Ackerman Leave a comment

My daughter, now in her senior year at Lafayette College as a psychology major, has been armchair diagnosing our friends and family since her early high school days when she would read the DSM-V for fun. It’s fascinating for me as a parent to hear my child talk academically about topics and use language outside my understanding. And I do enjoy it.

If you know me, or you’ve read this blog for any significant time, you may know that I have struggled with my mental health. I exhibit symptoms of anxiety and depression from time to time, love routine yet challenge rules, obsess over numbers and patterns, overschedule myself and never relax. And the funniest part of that– I have gotten better about these things.

Through casual observations, it seems obvious that ADHD runs in my husband’s family.

But my daughter continued to study people– and me– and one by one she made her diagnoses. “Your dad had a type,” she said to me once. “His wives were all narcissists.” Or she’d suggest a medication to a friend looking for relief. And I have never seen her be wrong.

She has recently declared that her father is “autistic as all shit,” (which my mental health therapist had suggested might be the case more than a decade ago) and that she thought that she “inherited her ADHD” from me.

I protested. “My executive function is fine.”

“Is it, Mom?”

Her words make me recall a conversation I had with a friend of mine before I left for Ireland in the spring. I don’t even remember details of what we said, but it was a business call, and I remember listening to this woman I respect and adore the creative work of, a woman who had ADHD, and thinking “that sounds a lot like me.”

At Eva’s urging, and her constant reminder that traditional medical research applies to 40-year-old white men, I looked at the symptoms. And when I google information, I always evaluate the source. I look for articles from medical centers, government agencies, professional organizations and publications like Psychology Today. (It may reduce everything to layman’s terms but it does have a responsibility to be accurate.)

These are symptoms of hyperactive impulsive ADHD in adult women that spoke to me:

  • racing thoughts
  • subtle fidgeting
  • excessive talking
  • overcommitting
  • burnout
  • rejection sensitivity
  • hiding internal struggles to appear calm and organized
  • burn out
  • signs of anxiety
  • signs of depression

Let those last couple sink in. Women with ADHD are commonly misdiagnosed and treated for anxiety and depression.

I wonder if I would be more restless and move more if I didn’t have spastic cerebral palsy that prevents my legs from doing things. The more I pay attention, the more I see how my daughter’s ADHD habits totally mimic my own. And I never noticed.

And I know people with ADHD often self-medicate with caffeine and sugar. I never experienced a cup of coffee calming my thoughts, but I do know I can drink a lot of caffeine with minimal reaction but I get a sugar high really easily.

I am also prone to hyperfixation. And taking on hobbies with gusto and then suddenly never doing them again. It’s like one of my existing hobbies will suddenly explode and become all I do and then, one day, I never wanted to do it again. When Eva was born, I made something like 18 scrapbooks in her first three years of life. Since she turned 4, I did not have a photograph printed. (I blame the iPhone. Not my brain.)

As a well-behaved patient should, I called my mental health therapist/psychologist to see if we can explore this idea. He will see me Thursday. And it might be wishful thinking, but he sounded like the concept might have triggered a “lightbulb” moment for him– because I know he has grappled to find “what I need.” His formal diagnosis has stated that I exhibit occasional symptons of generalized depression and anxiety.

Any good theory deserves an experiment. So, after a few online surveys, I took a trial dose of Adderall. I was terrified to do so. I have issues with high heart rate. I was fairly confident I would be very uncomfortable.

And then, in a conversation with my daughter about 20-30 minutes in, my brain felt soft. And then about 40 minutes in, my hands started tingling. All my fingertips felt weird.

“Mom?” my daughter said. “Is something happening? How do you feel?”

“My brain feels like goo,” I told her. “And something’s wrong with my hands.”

She took my hands and looked at them. “What’s wrong?”

“They’re tingly.”

“Mom,” she said. “They’re warm. That’s all. You have circulation. Your hands are not cold.”

My hands and feet are never warm. My body temperature is usually around 96 degrees. I had first-wave COVID, and my “fever” was a body temp of 99 degrees. And even on the hottest summer day, my hands are usually chilly when other people touch them.

And in that moment, I knew I had slowed down. It was like someone just took the energy that was “me” and turned down the flame a couple notches. I read my tarot cards; they felt it. I went to the grocery store and casually looked at the options and didn’t run from one aisle to the next. I wrote a Substack newsletter. Because I wanted a record to see if my writing had changed. (You can read that here.)

All the stuff I normally worried about and used all my energy to “do,” it didn’t feel urgent. I laughed easier. Moved slower.

I remember the day my daughter first took her ADHD medication. She was standing at the table in her grandparents’ kitchen, animatedly telling a story. As I listened, I realized that she had stopped vibrating.

I had stopped vibrating.

“It’s like your aura has changed,” my daughter said.

“I’m calm,” I replied.

“I never understood what you meant when you said that I ‘stopped vibrating,'” she said. “I get it now.”

I had stopped vibrating.

The thought that I really could stop vibrating made me want to cry– from relief, because of the new understanding, in fear that I would never feel this way again, hope that I could.

I slept like a baby that night. And the next few days I went back to being me. The me I know. My heart rate and blood pressure hadn’t been impacted.

We opted to do the next trial dose yesterday. I was meeting a good friend and wanted to see if she saw a difference. I was scheduled at the restaurant. I wanted to see how it felt in a different environment.

I took the medicine. Went to Panera for my writing date. I drank herbal tea to be safe. At 9 a.m. I caved. I had 12 ounces of coffee. And then about 6 more. It did not disrupt my zen. I did my writing. I was less talkative.

I came home, did more work on my personal project because I wanted to, and I didn’t fret about all the things I “should” do. I knew I would do the things I should, but I didn’t stress over doing them right now. Then, I watched TV for a while. And I didn’t feel guilty about it. My daughter came home from school and her 3:30 dog walk canceled so we didn’t have to rush out the door. I sat on the couch and chatted. I didn’t try to do more.

Now, the medicine should have worn off by the time I went to work at the restaurant. But I don’t think it did. I sat in the lobby watching everyone. It made me happy to sit and watch them. I thought they were moving slowly. That maybe the restaurant wasn’t the busy place I thought it was. I am often stressed by the fact that the kids I work with don’t think anything is urgent. Maybe they are right. My heart was not racing in anticipation of my shift.

I was not thinking about all the stressful things that could happen.

But as the medicine started to wear off, the restaurant got busier. But even as my heartrate and workload increased, I didn’t feel the “panic” I would normally feel. I didn’t feel the need to analyse and make a plan every two seconds. And then I thought of the perfect way to phrase it– because I got moved to a work center that stresses me out– even though the medicine was wearing off and I could feel the stress in my body, my brain and my behavior were not motivated by a sense of impending doom and disaster. I know that sounds dramatic, but every piece of stress I feel it my body feels like if I don’t keep up with the moment/the environment/the task, I will face a disaster.

Remember the television show LOST? There was a button on the island that someone had to push. I believe it was every twenty minutes. No one knew what the button did, but they all believed that if they didn’t push the button, something terrible would happen.

My brain is pushing that button all the time.

But on the show, I believe something bad did happen when they did not push the button.

And I feel like even when I did not have the full effect of the medication in play, my sense of doom dissipated. And that was amazing.

When I took this medication, I felt like I could relax. I have been wishing for decades that I could find a way to relax. I thought I needed a hobby, not amphetamines.

And today my daughter tells me that cerebral palsy is also lumped into the neurodivergant classification… More to think about.

**I cannot find much information on this, but my anecdotal experience on medication suggests that although it should not, my mobility and spasticity improves when I take Adderall. My experience feels like I no longer hold as much stress and tension in mu muscles. Which is why I wanted the small dose of Valium. Maybe I need the opposite?

Do I need to put on clothes today?

Angel Ackerman Leave a comment

Tonight I have a long-for-me shift at the fast food restaurant. 4 p.m. to 10 p.m.

Tomorrow I have a very busy day– gynecologist appointment at 7:30 a.m., helping Nan with her stuff around 9:15 a.m., teaching in the afternoon.

Thursday, we are recording our radio program at WDVR. Then, selling chicken from 4 p.m. to 9 p.m.

So, today I wanted to send out our acceptance letters for the Greater Lehigh Valley Writers Group The Write Stuff conference, March 11-13, 2027 at the Homewood Suites by Hilton in Center Valley, Pa. And I almost sent one so far. It’s ten minutes from noon.

Did I do things? Yes. Were they important? Yes.

Just not what I intended.

One of the items I have needed to do is grab a few groceries. I have been very careful with my diet lately (which has led to a new number today, one I haven’t seen in more than a year if not since the pandemic when I started rapidly gaining weight). And my daughter made me get dressed and go to Aldi.

Why Aldi? I wanted chicken salad and shelled endamame.

They didn’t have chicken salad and only had whole edamame. I didn’t want whole. I also wanted a salad and all their greens and pre-bagged salad mixes looked past their prime. So I came home with baby carrots (which I don’t eat, and I was hoping to make carrot pickles but I didn’t get the vinegar…), plain greek yogurt (because the flavors have too much sugar, but I probably won’t eat the plain), half and half (but I did not get coffee), crab cakes, and cheese. And bologna. Cheap cheap bologna because despite my primarily vegan tendencies I just really needed a bologna and cheese sandwich.

And two boxes of protein bars since I didn’t buy much food.

I did not want to get dressed. Until later.

Yesterday, I had my annual physical with my primary care physician. It was the first appointment of the day, and he spent 45 minutes with me. I had told myself that I did not intend to bring anything up. That I wanted to get in and out, continue my own experiments into diet, exercise and sleep, and ask for follow-up bloodwork.

He went through my late June bloodwork I did for him and the mid-August bloodwork I did for the life insurance company, with me, and requested I do another A1C and some vitamin D and some stored Ferritin… He was surprised to see– that as I told him– my “bad” cholesterol and my weight change very quickly according to what I eat. It’s how I gained almost 15 pounds this winter and lost it since July.

I still think I am among a rare amount of people who really pay attention to their bodies and try to understand and improve. He also asked how long I’ve been off my blood pressure meds– and I said– “about a year,” and then I reminded him that my cardiologist knows, or at least I told her I would probably stop taking them.

“Your blood pressure is great,” he said.

“The pills didn’t help,” I replied. I was prescribed the beta blocker because of my single incidence of afib. I stayed on it because I hoped it would help my anxiety– specifically the way my heart will sometimes race for hours for no reason. But the medicine never stopped that. If anything (and I have yet to prove this, my evidence so far is purely anecdotal, it’s food. I think the right blend of high sodium and refined white carbohydrates makes my heart want to explode.)

And my blood pressure has maintained itself in a healthy zone the entire time I have been unmedicated.

But then my doctor found out, I have been having stress dreams, disrupted sleep routines and general poor sleep since incorporating more “easy food” and less of my “outside aisles of the grocery store” home cooking. And now he’s worried about sleep apnea, my tendency to display symptoms of mild clinical depression, and my inability to relax (or have fun). He offered me a temporary antidepressant, and I declined.

And then today I remembered… I have been on the waitlist for a psychiatrist appointment for almost a year. During my routine physicals last fall I talked with my entire care team (primary care, cardiologist, mental health therapist, and neurologist) about the prospect of trying a low dose of valium as a breakthrough medication.

According to my research, doctors often give valium to children with cerebral palsy to calm spasticity and help them sleep. I asked my team about it. No one has experience with that sort of thing so they referred me to psych. So I reminded my doctor of this is an email. I told him that on bad days I often take 60 mg of baclofen– so could we try a small dose of valium in a small amount of pills to see if I took 2 mg of valium instead of all the baclofen if that would calm my muscles, alleviate my twitching hamstring, settle my heart, reduce my spasticity, and allow me to (1) stretch everything, (2) sleep better and therefore (3) recover better.

Remember– my leg muscles are unable to relax. I can’t even describe what it feels like. Sometimes it feels like my calves are so tight they burn. Sometimes my thighs feel like bricks. So if my doctor thinks I might benefit from a little something… this might be the something.

And on my one tangent for today: I have been binge-watching Nurse Jackie. I never liked Jackie, found her repulsive as a person but the older I get the more I recognize the accuracy of the depiction of people in addiction. And my daughter brought up something vital to consider:

Is Nurse Jackie an unreliable narrator?

My daughter votes yes, because there’s no way that an addict taking as much shit as she does (especially as a nurse) could appear to have her shit together as well as she does.

Interesting thought.

I have reached the midpoint in the series, and I’ve never watched this much before. And she has entered rehab and thrown her husband out of the house. And I’m thinking about it.

Meanwhile, my daughter has been tracing ADHD and autism in her family tree. My daughter– from a young age– has been super keyed in to people’s minds, patterns and habits. And just like she’s freakishly good at seeing every ripple in a dog’s body language, she’s damn accurate with her psychiatric diagnoses. And she’s finishing her bachelor’s in psych at Lafayette, she’s also developed some ideas about medication (so I asked her to do one of her recent psychopharmacology assignments on valium). She’s wondering if I might have ADHD.

My response is typically that it doesn’t matter.

I have a disability. One that stems from lack of oxygen at birth. One known to affect GABA in the body.

I score fairly high on the ACE scale for childhood trauma.

My parents were alcoholics.

Did I inherit generational trauma? Probably. Do I exhibit everything from OCD to depression to anxiety? Yes. Because my brain never learned how to feel safe and/or let its guard down. I never relax. The last time I felt truly relaxed was during some good adult physical activities that I don’t get nearly enough of. And do you know how much I need to trust my partner to let that happen?

My daughter believes something interesting about this whole ADHD hypothesis. She basically said I have not allowed myself to fail enough to recognize the truth it what she’s said. AND that because of that no clinician could ever diagnose me.

Strange food for thought.

Why the Disability Struggle Impacts All Humans

Angel Ackerman 1 Comment

It’s Monday morning, and while my red blood count maintains there is nothing wrong, my body shows the signs of anemia, which feel better when I follow a strict regimen of healthy eating, vitamin D and iron supplements… but that is something my primary care physician and I will discuss at my annual physical in September. And he will probably express disappointment that I have regained the ten pounds I lost last year.

It’s true for all of us– when we’re sick or weak or broken, we take care of ourselves (or we try to, I hope) and when we feel better, the routines that help us maintain that wellness fall to the wayside and lean toward repeating the same problems. I know I have a 20-year history of struggling with low ferritin reserves, why don’t I do better to always keep a routine of quasi-regular supplements?

Many disabilities are permanent but not progressive. And most people experience disability at some point in their lifetime– either congenital, temporary or permanent. Any person with a disability or aging person can explain the weight of co-morbidity, that while their various issues alone may not be progressive, when combined with our temporary or new ailments can make life exponentially harder.

My mother struggles to understand how I could be so easygoing and mobile as a kid while experiencing more falls and discomfort now. As my mother, she is no stranger to the aches and pains and limitations of aging, but she didn’t connect that the running and playing and constant activity I had as a child kept my muscles looser and healthy in a way that I can’t match as a fairly sedentary adult. That’s part of the reason why I’ve usually had a part-time job that requires movement and pursued strength training as a hobby.

I know that I need to lose 30 to 40 pounds. As a person aging with cerebral palsy, this would help my cardiovascular system and help take so much stress off my musculoskeletal system. But I have learned, through years of strength training and nutritional counseling that my body reacts strongly to salt and sugar, which means if I wish to lose weight I need to not only increase my activity level, but also cook whole foods, every time. The vicious circle of “I don’t exercise enough because my body hurts/I can’t breath/I’m tired” perpetuates itself because the only way to get past the discomfort is to do it… and survive and persist. (And then there’s the ironic reality that you can overdo it, and hurt yourself trying to do what’s right.)

This is not a disability struggle. It’s a human one.

All people experience a disappointment in and/or failure of their body. It’s a point Johanna Hevda and Julia Watts Belser both point out in their work. They claim that everyone experiences disability within their lifetime, but I extend that same idea to say that all people at some point experience some sort of body dysmorphia. Even if your body works, and is completely normal, people will experience dissatisfaction with it at some point. Maybe you hate your hair, struggle with your weight, identify as trans, wish you were a better athlete. All of these experiences have nothing to do with disability, but stem from the body.

A pile of three disabilty-themed books. The top one, How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva, is pink with red stars. The next on the pile is a beige memoir, FIfty Years of Walking with Friends, by DeAnna Quietwater Noriega. The one on the bottom is vivid yellow, Loving Our Own Bones, by Julia Watts Belser.

Disability Pride Month is celebrated in July because that’s the month when the Americans with Disabilities Act was passed. I didn’t put that together until today, so if you needed that tidbit of knowledge, there you go. I happened to order a whole bunch of disability-themed books in late June because my good friend Nancy Scott told me I should be doing more writing in that space, and she’s right, and she’s tired of hearing me say, “when I write my medical advocacy memoir.”

The four books from the disability space that I read this Disability Pride Month:

  1. How to Tell When We Will Die: On Pain, Disability, and Doom by Johanna Hedva
  2. A Disability History of The United States by Kim E. Nielsen
  3. Fifty Years of Walking with Friends by DeAnna Quietwater Noriega
  4. Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Watts Belser

I have been working to expand my collection of books by writers with disabilities. I currently have read books that range from poetry to books with characters on the autism spectrum, though none of these books include my fascination with medical fiction, a realm where Michael Crichton and Frieda McFadden spend some time, and one of my favorite memoirs (An Exact Replica of a Figment of My Imagination) which covers pregnancy and pregnancy loss simultaneously. My Goodreads shelf of “disability” books is visible here.

Poets with disabilities on my read list include Jennifer Bartlett, Larry Eigner, Susan Glass and Nancy Scott. Twentieth-century memoirists on my shelf who explore cerebral palsy include Christy Brown and Marie Killilea, and then there are the people I know, like Tylia Flores (we connected via the Internet) and Peter Altschul (who like DeAnna above is a member of the Behind Our Eyes writing group).

Here’s a very brief review for each of these four books:

A copy of A Disability History of the United States
  1. On Hedva: I already wrote a long piece about this one, primarily to keep my own notes accessible for future use. You can read that here. Hedva is a queer writer who uses they/them pronouns and has issues with chronic pain and bipolar depression. Their essays are not a cohesive unit, but based on an essay that gained them a publishing contract when it went viral. Their greater thoughts about disability are steeped in personal experience, and often tied to their sexual experiences. But this author challenges us to view the difference between capacity and capability, just because we are capable of something does not mean we have the capacity to do it.
  2. On Neilson: Nielson ended up researching disability as an accident (or serendipity?) as she worked on her history dissertation. Hedva writes philosophically about the capitalist resistance to disabled bodies (as we are worthless if we are not productive to society) and Nielson uses her history background to explore how the capitalist framework has disenfranchised all bodies that are not able-bodied white men, which I found hysterical because one of my publishing company’s initial projects was an anthology, Not an Able-Bodied White Man with Money. See that book here. She weaves together the plights of women, people of color, and people with disabilities into the same historical framework– all of them had bodies deemed inadequate and incapable and inferior by white men.
  3. On Noreiga: This was my first time reading one of Noriega’s books. She’s a self-published author of indigenous heritage who lost her sight as a child. As someone on the waiting list for a service dog, I thought it would be fun to start with her experiences with her (I believe) eight seeing-eye guide dogs. The memoir covered the first decade-ish of Noreiga’s life in autobiography format. The final chapters each provided a summary of her later-in-life seeing-eye guide dogs. While the book did offer insight as to how these dogs perform their complex duties and build relationships with their handlers, the primary focus of the book is Noreiga’s college years and first few years of marriage.
  4. On Watts: Nancy Scott ordered a Braille copy of this from the library at the same time that I ordered the print copy, and that was sheer coincidence. Some of Watts’ ideas are beautiful, like her interpretation of observing the weekly Sabbath as a tribute to not only spirituality but also to her body as an opportunity for rest. Like Heva and Nielson, she laments the push for capitalist societies for valuing bodies only on their capacity to do work– but I think all of these writers need to consider the role of industrialization in all of this. We are no longer in agrarian societies where families live and work together communally and therefore can cater the work to individual strengths and weaknesses. Watts treads a strange line. As a queer rabbi with cerebral palsy and a wheelchair user, she tends to tell us minimal information about herself, yet connect her spiritual journey to her physical one without giving us all the details. In many passages, her affluence shows through, that her financial resources and life situation have provided her with more opportunity that the average disabled person. And she seems to have a fascination with the potential amount of times blindness appears in the Old Testament. As said before, her ideas and themes overlap with Hedva and Nielson, and she focuses on building a relationship with God where you are whole and representative of God in your broken/disabled state. She applies this to beaity standards as well.

I will be revisiting some of these thoughts in my Substack this week,

Thoughts raised by Johanna Hedva

Angel Ackerman Leave a comment
Screenshot of the Goodreads review that is also quoted in the blog piece

I put Johanna Hedva’s How to Tell When We Will Die: On Pain, Disability and Doom on my wish list probably when it was a new release.

The cover design is lovely and the bio of the author is enough to draw interest:

Johanna Hedva (they/them) is a Korean American writer, artist and musician who was raised in Los Angeles by a family of witches and now lives in LA and Berlin…

I guess the first step of my thoughts on the book would be to share my Goodreads review with you.

I gave the book five stars even though the most Generation X parts of my soul wanted to give it four, because despite how much I disagree with some of her points– I can’t stop thinking about them.

My Goodreads Review

“I almost read this in one day– Johanna Hedva’s essays are poetic, academic, and provocative. Johanna has a variety of physical and mental health issues that them outside the realm of standard able-bodies. Yet, sexually and identity also play a huge role in their experience.

Johanna is about a decade younger than me, and in many ways I do not agree with their statements and conclusions, (I am a GenX white woman with cerebral palsy from a low socio-economic background and family of addicts, and if I try really hard and expend a lot of energy I can pass as able-bodied– some similarities to Johanna, enough to understand them) but their philosophy is never wrong.

When talking to my congenitally blind friend, who is a Boomer, about this collection, my friend said, “sounds like I wouldn’t like her.” And I said that she probably wouldn’t, but she still might like the book.

This book has a lot to chew on.”

So what are some of their thoughts and my thoughts on their thoughts?

Random comments first.

  1. The title is a shout-out to astrology.
  2. Their book deal for this collection stemmed from the essay Sick Woman Theory which went viral. The attention it garnered made them more of a figurehead and/or activist than they ever intended to be. The essay Sick Woman Theory is not nearly as interesting as her response to that essay, Why It’s Taking So Long.
  3. As a member of GenX, I have some discomfort with how the queer community throws around labels. Johanna identifies as a queer, and not as a woman, which is fine, but I guess I remember the days when people didn’t need to define their identity as concisely as we do now. You didn’t need to label every aspect in which you are weird. It’s okay to just be different.

So let’s look closer at some of their points.

Essay One: “How to Tell When We Will Die”

Opening paragraph:

“Heroes die on the battlefield, never from chronic pain. Diarrhea never makes its way into myth. Tragedies are devoid of menstrual cramps.” Johanna has my full attention. On the second page of the essay, they talk about the representation of disability in early and twentieth century film, and how disabled people become “flattened by some insidious super-cripple myth.” Throughout this first essay, Johanna is tossing around some serious academic critical theory before suddenly turning into memoir…

They speak about not receiving a diagnosis for their ailments until in graduate school (despite later saying that the conditions were inherited from their mother and grandmother, so I think the statement should have been that they could not get a label on the diagnosis– she does state that doctors were “baffled” by her symptoms and “dismissive of their validity.”). And they mention that they stayed on for a second master’s degree to keep their student medical benefits to the tune of $250,000, that led to a career in the arts where they refused any job that did not meet their aesthetic. They chose poverty. They chose art.

I’m wondering why– even if they didn’t want a standard job with employee-sponsored health insurance– they didn’t just buy health insurance or take on medical debt instead of a quarter of a million dollars in student loans.

But then there are gems like “You do not have to be disabled to experience ableism” and “no matter how it arrives, disability will arrive for everyone, sooner or later” (which they repeat in the last essay.) And Johanna points out that the biggest ableist fantasy is that we control our bodies, and we will always be able to control our bodies.

Johanna talks a lot about her mother’s addictions, and the abuse they suffered at their mother’s hands, and of their own mental health issues. Her first suicide attempt happened at age nine, when she took a bottle of sleeping pills, and when she did not die, she carried on with her life.

We are more than 25 pages into the book when we learn that mental health plays a significant role in her disability, which we later (not in this essay) learn includes endometriosis and chronic shingles. I understand that people with disabilities do not owe any sort of explanation of their ailments to anyone, but if you are writing a book about disability, I believe that information should be front and center.

And in this essay she mentions her love of death and doom metal. You can hear some of her music here on YouTube.

Essay Two: “Sick Woman Theory“

The essay that started it all. I think it’s really important to understand that they called it “sick woman theory” because regardless of how they identify, the medical establishment and the world consider them a “sick woman” and they are seen as a “sick woman.” They frame their theory that our capitalist world is designed for the existence of “white, straight, healthy, neurotypical, upper- and middle-class, cis- and able-bodied man who makes his home in a wealthy country, has never not had health insurance, and whose importance to society is everywhere recognized and maybe explicit by their society, at the expense of everyone else.” To a certain extent, I want to call out a “Yes, bitch,” (as they toss around this phrase) but at the same token– would the experience be the same in the developping world/Global south.

Essay Three: “The Blast Radius of Disability”

I have to say that I love this concept, “The Blast Radius of Disability.” Disability doesn’t effect one person, one episode, or one place or time. Instead, it impacts everything around it, everyhing that it touches. Johanna speaks of time dvided into before and after sickmess, but I can’t help but wonder how they can divide time in such a way when mental illness entered their life so early they can’t really remember a before, can they?

It is in this essay that Johanna mentions that individuals with disabilities must operate according to “crip time” not clock time, doing things as the body deems itself capable not as the world says we have to do them. On one hand, I understand the point, but that’s not how the world works. I have to believe that there has to be a balance, of not overdoing things in order to conform to the mainstream standard and hurt oneself in the process. And there’s an inference that the entire world runs on the same precision, which isn’t true. There is “island time,” “Latin time,” and “African time.” Each culture has its own realtionship with time, so maybe they need to find a place and a rhythm that works for them.

Essay Four: “In Defense of De-Persons”

A discussion of capitalism and mental illness.

Essay Five: “Get Well Soon”

“Are these my limits, or are these the limits of the world?” Johanna reminds us that disability is part of a dichotomy– the ill being inactive while the healthy take action, the disabled remain still while the rest of the world creates revolutions.

Essay Six: “Notes on Activism (aka Notes on Failure)”

Organizing is exhausting, Johanna begins. Activism, they write, “reminds us how the world actually is, not now how we would like it to be.” Activism often comes off with hypocrisy– like buying your anti-racism books off Amazon.com. Their other question: How can you balance the need as an activism to care for others, yet also take care of yourself?

Essay Seven: “Letter to A Young Doctor”

I didn’t like this one. It seemed to repeat some of other concepts. Johanna tells this doctor all the other things they have already told us and will tell us differently in future essays. The doctor approached Johanna asking for advice.

Essay Eight: “Soft Blues”

Or “The Summer of the 12-inch cock.” The first several essays that are reflections on Johanna’s sexuality. And an in-depth exploration of her experience in a mental hospital for depression that led to her experiencing an entire summer of bipolar mania.

Essay Nine: “Can I Hit You?”

The BDSM essay. Which has the most amazing line: “Pain is the price I must pay to be awake to life.”

Essay Ten: “The Freak”

Another relationship essay. The only highlight I have in the whole essay is when Johanna discusses capability and capacity. They remind us that just because we are capable of something does not mean we have the capacity for it at this time.

Essay Eleven: “Notes on Trash Talk (aka Notes on Community)”

Interesting essay where Johanna gives a view of their obsession with fighting, boxing, wrestling and MMA, and how the way a coach talks to a losing athlete is the type of trash talk we could use more of as disabled people.

The next few essays are all Johanna’s entertainment criticism. I will skip those, even though they do circle around to disability as it all does.

Essay Fifteen: “Notes on Ambition (aka Notes on Survival)“

This is a complex one– looking at what we all need, versus what we want, and how many of our ambitions are actually motivating us toward ideals that might not be our own.

Essay Sixteen: “Hedva’s Disability Rider.”

They explore this rider more in a later essay, the one I mention that speaks back to the original “Sick Woman Theory” and presents the repercussions. But here, Hedva gives us the document they send to institutions that invite her to perform. I feel like some of the items on the rider should not be listed as conditions for employment, but instead factors of how much they should charge for their fee. If you know you need a business class airline seat on the aisle, you make sure you only say yes if the organizers give you enough money. Some of the informational items are valid: like allergies. But Johanna also uses the rider as a way to advocate for everyone with disabilities and call attention to how excluded people with disabilities are. They ask for sign language interpreters, live captioning, all-gender restrooms, wheelchair accessibility and audio description.

They say they know they won’t get all of it, but they like to have the conversation and point out how unaccessible and exclusionary the world is.

And this is why hardcore advocacy is exhausting, friends.

While we would like to invite all the people with disabilities to everything, why provide the services if the people aren’t there? I know Nan and I have attended shows at DeSales University where they have one performance with audio description and live captions. These shows are made accessible with grants. Start there.

Essay Seventeen: “Room Day”

Johanna’s partner is Johannes, a German citizen, which is why they now live in Berlin most of the year so they can get better medical care. She does not mention her partner until essay seventeen. The partner to whom the book is dedicated.

Essay Eighteen: “Soft Until It Gets Hard”

How can you not love this title? Another relationship essay.

Essay Nineteen: “Why It’s Taking So Long”

In this essay, Johanna discusses the rider and how when they send the rider to an individual, they would prefer not to see that individual in the context of the institution but as a person with whom they can have a conversation. Teaching moments? Which is exactly what they say later on the page when they discuss they are now part of a “learning experience” that they did not want to be. And here’s another great observation– if an invitation comes in for any event that involves the concept of care in any way and is being organized by solely white women, Johanna won’t do it.

The essay falters between the idea that Johanna never wanted to be an advocate but now that they have the power, they feel a requirement to advocate for everyone.

Here are some great points:

  • Capitalism is so demanding, it makes us all more disabled
  • Even when we are told we “have to,” humans can’t truly do anything alone
  • It’s a fallacy that all you need is will, and the proper manifestation of it
  • Care is often framed as debt
  • You might be winning, but maybe there’s no prize

Essay Twenty: “The Hag in Charge”

A lovely adventure through Greece that offers some recollection of Johanna’s poverty and her spiritual beliefs.

A line that reminded me of Nan, who says this often: some disabled people (Nan and I like to say it’s normally able-bodied people who become disabled) have a fantasy of healing, “and then hate themselves when it fails to arrive for them.”