Am I Alice? The White Rabbit? Or the Mad Hatter? Or the Queen of Hearts?

Angel Ackerman Leave a comment

Who doesn’t love a good mystery?

Anyone who deals with serious medical issues has experienced a sense of Wonderland. Is your regular life Wonderland? Or is the medical system Wonderland? Who is Alice? Who is the White Rabbit leading Alice down the rabbit hole?

We all have a lifetime of experiences. Some good, some bad. Some of us got “good” bodies, some of us have bodies we hate. Some of us have learned to accept our bodies. Some of us work really hard to change our bodies.

Some of us want to understand. Some of us want only to survive.

All of those things are okay.

We all have Alice in Wonderland moments.

It’s been a couple of weeks since my daughter, who has ADHD, floated the idea that she inherited the ADHD from me. It’s been one week, almost to the minute, since I took 10 mg of extended-release Adderall to test her theory, at least to give us data on if the drug brought me up or down. And the answer was down, pointing toward something not neurotypical.

And as you will see later in this entry, one of the stumbling blocks to determining what exactly my brain needs– whether that is treatment for ADHD, anxiety, depression or nothing– is, as my daughter would put it, I mask so hard even I don’t see the problems.

I have always been extremely organized, and I forgot nothing. And yesterday, at my second doctor appointment of the day, the clinician got out the standard short ADHD screening and asked the questions related to inattention. I don’t have a problem there. But I am realizing more and more, I write everything down multiple times. I write in my journal, on my paper calendar, on post-it notes, on my electronic calendar, in this blog. I write down when I take my medicine. My blood pressure.

And this morning– I went to blow my nose. Allergies are hitting in full force and Eva has an ear infection. In the middle of blowing my nose, I put the tissue down so I could take a Zyrtec before I forgot. I do not remember if I took the Zyrtec. I did not log it in my phone. The cap is off my water bottle, but did I take the pill?

Could my “obsessive” habits, like checking my bank balance several times a day, be not a form of soothing my own anxiety but something I do to prevent myself from missing something?

And even right now, as I write this, Eva has interrupted me and the entire train of thought for what I was writing completely disappeared. I had to reread the whole paragraph and reconstruct what I was trying to say. Is that normal? I’m honestly asking. So before I get too much more ahead of myself, let’s talk about yesterday.

Yesterday, I met with my longtime mental health therapist. I wrote a quick entry yesterday about that visit, posted it, somehow managed with a same day appointment with the practice who handles my everyday care, realized that the post was worse than I thought it was, and so I took it down with the intent to do a better job with new information.

And here we are.

Some observations from that appointment with the therapist who started treating me for anxiety more than 15 years ago. (That seems crazy. It can’t be that long. It just can’t.)

  • My individual complexity may prevent a simple diagnosis/solution. My history of childhood trauma and neglect, my family history of addiction, substance abuse and domestic violence. My physical disability (to which he adds “never discussed nor treated). So my brain could be doing anything for any reason. I believe this is why I’ve developed many of the habits I have that are masking how I feel on the inside. Whether we attribute this to ADHD or anxiety, that is part of the mystery.
  • Even looking back, with my history of doing and achieving all the things and doing them pretty well, it would be difficult for a clinician to trace this back to my childhood. Childhood presentation is one of the required elements for an ADHD diagnosis. (But, again, I was dealing with a lot of things, things I didn’t understand… from my body and my environment.)
  • My therapist theorized that if I have ADHD, I may have inherited it from my biological father. And that was a lightbulb moment for me. The first time I met him, I was

(I picked up my phone while typing this. I have no idea why. Got lost scrolling Instagram. Put the phone down. Realized I was in the middle of the sentence. And don’t remember what I was saying. So I distracted myself?)

  • … impressed by the breadth of his creativity and the projects he undertook. But I also remember that he had decided to remodel the bathroom and had never finished the one wall. It was still primarily the framing. Functional. But no real wall on the inside of the room. And when he and my mother split up, he went with his dog and lived in a cave in the woods until it got cold. Then it built a shelter. And when he and his wife split up, he left in his pickup truck, with his dog and a duffel bag and moved to the midwest. Where he got a job at Russell Stover chocolates.
  • My therapist can provide a letter of support to my primary care provider, and he reminded me that it didn’t matter the diagnosis if we could find a treatment that could bring relief. (And my therapist and doctor know each other so that helps.)

Now, I know “euphoria” is one reason people who don’t have ADHD take Adderall. And I’ve taken other types of medication: Lexapro for work stress and then depression (which helped in that “take the edge off” kind of way); beta blockers to control my heart rate (which failed); and Ativan for panic attacks (great, as long as I just wanted to come down and not do anything for the rest of the day). When I took Adderall, it wasn’t euphoria– it was the sensation of being able to let go of the adrenaline, the sense of doom and the constant muscle tension and being able to effectively regulate my emotions because normally my emotions also stress me out because I can’t do anything to work through them. I could on Adderall. If anything, that is what I want. I want that.

I asked my therapist: What would you recommend as my next steps? Since I have not been able to get past the waitlist for a psychiatrist, should I make an appointment with my family doctor?

I went home and called the office.

(Right now I am sitting here, forcing myself to finish this because it’s important. I need to pee. I’m very hungry. It’s 9:22 a.m. and my daughter and I are leaving for Susaquehanna Service Dogs which is sooooo exciting and stressful and… but if I don’t do this now I will not do as good of a job if I do it later and I don’t want to forget a single detail because the details can mean the difference between finding answers and getting the run-around from the medical establishment. This is how my brain works.)

I was offered an appointment with my regular provider October 13 or I could see another doctor in a couple hours. I took the appointment in a couple hours. I knew nothing would get resolved quickly, but wanted to position myself “in the system” to get the process working. That’s the hardest part of the medical system. Positioning yourself to get access to physicians and presenting the case with evidence, not anecdotal experiences.

That was why I started with my therapist. While he’s the most expensive provider on my list of medical professionals, he was the most qualified to give an opinion. Offering his opinion, based on our experience of 15 years, will hopefully show this is a legitimate possibility and not just a drug-seeking behavior. I specifically work with this therapist because he is a Ph.D. psychologist– I wanted someone who could help me grow as a person, not just medicate my brain. I have done a lot of worth in those 15 years, but recent years have shown me how much I fight myself and that I could have a chance at actually slowing down and enjoying more of my life, not just frantically surviving it and celebrating sporadic moments. Because in my brain, nothing is ever safe, or enough, or helps me overcome the doubt and doom.

(Okay, I need to get up and pee now. I’ve had 10 ounces of coffee and like 24 ounces of water… Be right back.)

(Hi, me again, I stopped to look in my protein bar basket. I should eat something. My belly hurts I’m so hungry. I have these blueberry breakfast biscuits that taste nice but don’t have any real protein. I also have a cookie dough protein energy bar from Aldi that is high in protein but full of chemicals, sugar and preservatives… I can’t decide. I have them both on my desk. I really want a piece of toast, but then I need to find and decide on bread, wait for it to toast. I should make an egg sandwich, but that is a whole undertaking of cooking. I guess I’ll open the breakfast biscuits… The taste bad. They usually don’t taste bad. And they smell weird. Are they spoiled. “Best if used by August 2025.” Did I mention I tend not to eat food I like because I might want it more another day? And then I panic that it’s not the best day to eat it? And now I’m sad that I let them spoil. Like really said. But honestly– they were Dollar Tree biscuits. So now I feel bad that I feel bad. I don’t need to beat myself up that much.

Now, do I eat the protein bar? Because I do not want to eat now. I threw out the biscuits. But I put them in my office garbage can. And the dog often gets in that can. Maybe I should empty it. Yes, let me do that quick. BRB. Again.)

So the doctor. She’s a great doctor. I mention that my daughter, and I both use the practice and my daughter does have ADHD. I tell her that I know we won’t have answers today, and I don’t expect that but I would like to start investigating this. She listens attentively and we explore the classic short ADHD. I have the anxiety-laden portion of hyperactivity impulsivity but not much else– and I ask her– I probably do fidget, but I have a spastic muscle disorder that means my legs cannot move. So how do we know? And I have similar I don’t know answers to some of the other questions. The test is inconclusive. She mentions other SSRIs. And that Wellbrutin has shown to improve symptoms of ADHD that coexist with symptoms of depression but it makes anxiety worse. And then she adds, “so that would be a bad idea for you.” And she wonders if I should try other SSRIs.

Her plan becomes three-fold:

  1. Get the letter from my therapist.
  2. Book an appointment with my regular doctor ASAP because he’s a busy guy. (Did not expect that.)
  3. She gave me a referral for a behavioral health case manager. This professional should be reaching out to me to prepare my case for review by a psychiatrist. It sounds like she does the evaluation, makes notes and gives them to the doctor so I can get medication through primary care… or through that psychiatrist. It’s a program designed for people like me who don’t have dangerous behaviors or immediate needs. And reduces the waitlist problem. That people never get off the list.

(I don’t want to write this anymore. I am forcing myself to do it. Just so you know.)

I leave the office. Hear from Eva that she got antibiotics for her ear infection. I email my therapist but then decide a phone call is more expedient and professional, so I call. He leaves me a voicemail a little later that we will get the letter together. And then the funny part– my actual primary care doctor comes to the restaurant, drives up to me in the drive-through, and chuckles when I ask what name to put on his order. He knows nothing of what I have gone through this week, or maybe he does, but I don’t think the other doctor finished her notes yet.

And that’s where all that stands.

Now if you’ll excuse me, it’s cold this morning and I am debating making a can of Spaghetti-O’s for breakfast.

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?

Hello, Ferritin, my arch-nemesis

Angel Ackerman Leave a comment

If you don’t already know, I had ridiculous anemia when Eva was in kindergarten, circa 2009. Luckily, we had already trained her to make a pot of coffee.

My stored ferritin was in the low single digits– I want to say if I was lucky it might have been a four. My menstrual cycle had always been heavy and at that particular time period, it had gone positively insane. My primary care provider at the time shrugged it off, which made me cry. And I remember sitting in the car, on my cell phone, crying to my husband, Darrell, who basically reminded me that I don’t usually take shit from anybody and I should direct my infamous temper at said medical provider.

One of the fun symptoms of anemia is that it gets worse in the hot sun. My problems started due to work stress wreaking havoc on my body in the spring. I (luckily) got fired from that job in March and the problem got diagnosed in the early summer. My daughter started afternoon kindergarten in late August. I would walk her the half-mile to school, and somehow walk home, and then back to retrieve her, and home again. But by the end of that last walk, I was so exhausted I would sit on the couch (and sometimes lay on the floor if I couldn’t make it to the couch) and wait for my five-year-old to make me a pot of coffee at 3:30 in the afternoon.

She would bring me the coffee. I would drink enough that I could stand up again and make it to the dining room table. Around 3:45 I would make my way to the dining room table, where she would refill my cup and do her homework until her father arrived hime at 4:40 p.m. On the days he found me sitting at the table drinking coffee, he would make dinner.

When my doctor showed no desire to investigate or improve my condition, I started the search for a new primary care physician (the one I am still with today). I had heard so many good things about this potential new doctor, and they turned to be true, because he had a three month waiting list for new patients. I really thought I would be dead in three months if the intense bleeding and the iron loss continued.

And then brilliance struck– I called my gynecologist. If anyone knew about issues from menstrual bleeding it should be my gynecologist. They heard my story and brought me in to see a nurse practitioner the very next morning.

When they saw the results of my blood test, my medical team asked how I was still walking around. The answer was adrenaline and stress.

The gynecologist’s office gave me a mountain of prescription Vitamin D and iron tablets. I started eating more cream of wheat, drinking nettle tea and getting more Vitamin C.

But my iron has never fully recovered. It’s at the highest it has been in a long time right now–31. Which is technically normal. But evidence shows that a level around 50-75 (and the higher end if you have problems like restless leg) is optimal. I heard that from my primary care physician and from one of my favorite doctors on Instagram (smilesandscrubs, her stored ferritin is 22 right now.)

I get my blood tested– for the third time in six months– next Saturday morning. My doctor wants the full iron workup, my A1C and my cholesterol.

My eating this week has been mediocre. And this weekend it got worse. I was down to 162, then yesterday I was 169, and now today I am a little under 168. Can I clean myself up?

I’ve been taking iron at least every other day, two vitamin D plus calcium tablets every morning, a multi as often as I can, and the occasional zinc.

Symptoms of anemia start a lot more basic than crippling exhaustion, although falling asleep in the middle of the day and not being able to stay awake despite buckets of caffeine does make it rather obvious. Other signs:

  • brain fog
  • mixing up/forgetting words
  • pale/dull skin
  • brittle nails/pale nail beds
  • cold feet and hands
  • racing heartbeat
  • shortness of breath

This Pizza May End Decision Fatigue

Angel Ackerman 1 Comment

This blog and website started life as my journalism portfolio, and if you look to the side menu, that stuff is still there. It morphed into some place to chronicle my travel writings, my adventures, and my restaurant “reviews,” and then headed down the road of my disability experiences. I guess, in essence, this blog can serve anything.

One of the best perks of social media is exposure to restaurants and attractions you’ve never heard of– with many of them in your own backyard.

Instagram decided I needed to know about Spice Crust Pizzeria, located at 2910 Easton Avenue in Bethlehem, Pa. It’s a pizzeria– and it does indeed serve standard pizza, but it’s specialty is traditional Indian flavors served on pizza. Now, Eva and I love two things: pizza and well-done Indian cuisine. Other members of our household are less adventurous so we left them home. Now that we know they serve boring pizza, too, we can bring them next time.

If you know Easton Avenue, it’s in the plaza behind the Dairy Queen– the one Eva and I call “creepy plaza,” because the area is a little run down and at night can look extra dilapidated.

In the midst of my recent health journey, and refining my eating patterns, I don’t eat out much. And working part-time in a fast food restaurant, I do typically make good choices like kale salads and yogurt and fruit cups but when I’m stressed I eat the ginormous fried chicken sandwich and gain two pounds the next morning.

So if I’m going to make a choice to eat out, I want it to be special and “worth it.” And I want options that aren’t fancy sit-down ordeals, but conducive to a relaxing evening of doing nothing. For many of us, pizza is a go-to. And Dominos, with its inexpensive delivery and special deals can be cheap and satisfying, but so bad for your body. Chinese and Indian are other great go-tos, and at least offer more opportunities for vegetables, but Eva and I see those menus and order enough food for a family of ten.

This is a great compromise– the ease of pizza, the lazy shove it in your face experience, but the culinary adventure of spices outside your everyday repertoire. (And I made an Indian-spiced lentil stew on Sunday that I have eaten for the last three days, but this was still better, and more delightful, and welcome.)

In the gallery below, you will see two medium pizzas. The one on the left, where you can see a pizza box, is the veggie paneer pizza. The one on the right is the chicken curry halal pizza. They are very beautiful, colorful pizzas full of texture.

We arrived and we ordered the halal chicken curry pizza. Eva grabbed a couple of their in-house-bottled mango lassis and I picked a lychee drink, which was very floral yet not heavy. It offered a great reprieve from the spiciness of the pizza.

We later learned that they make their own yogurt for the lassi, and Eva brought home three more for her breakfast. The lassi has the perfect blend of sweet from the mango, and tang from the yogurt, but had a delicateness to it that I would attribute to their homemade yogurt. Eva has already texted her father about stopping on his way home from visiting his mother to get her more.

We also ordered the fried broccoli cheese bites. Yeah, I probably shouldn’t have. I didn’t need more food and I certainly didn’t need fried food. If I hadn’t ordered those, the scale might have been kinder to me today.

But it is nice to do something out of the ordinary.

The pizza arrived and it was really amazing. They didn’t skimp on toppings. Every mouthful was full of flavor and exploding on the tongue.

That’s why we ordered the second pizza to take home. It’s waiting for us in the fridge.

Their web site reads: “Diverse Tastes, Unforgettable Flavors, Offering a Unique Dining Experience That Blends the Rich Flavors of Indian and Italian Cuisine.” Visit their web site here.

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.

The Brussel Sprout Challenge

Angel Ackerman 1 Comment

This summer, since May specifically, I have been doing well with writing in my journal everyday (which is especially nice as Lauren Wenson and I are facilitating a journal writing workshop at the Easton Book Festival in October.

I hope that now that my journaling consistency has been restored that I can apply some of that same discipline to this space. we’ll see how that goes.

On Friday night, my daughter yells from the kitchen:
“Hey, Mom, you could totally eat 14 side orders of Brussel sprouts at Red Lobster, couldn’t you?”

I thought about it, and if a side of Brussel sprouts in like six to eight Brussels… I did some quick math. “14, no. But I could totally eat ten.”

“No way,” her boyfriend replies. “If you ate that many Brussel sprouts I would pay you $100. And I’d pay for the Brussel sprouts.”

“When are we going to Red Lobster?” I ask.

The answer was today. I did the research. One order of a premium side of Brussel sprouts is 380 calories. They are roasted, with soy ginger sauce and crispy onions. That’s a lot heavier than I was thinking. But a bet’s a bet.

I didn’t really have time to prepare. We left home Sunday morning around 11:45 a.m. when I started to get hungry. I had had a cup of coffee at 7 a.m. but nothing else. When we arrived at 12:15, we were the only people in Red Lobster, besides the one guy day drinking.

We do a brief explanation to the waiter. He promises to bring them with no crispy onion topping.

“You better eat, girl,” he tells me.

Game on. He returns with my first five orders, reporting that the chef wanted to put them all on one plate but he said they had to be on separate dishes.

I get a glass of water and only have a sip. First three bowls disappear in about fifteen minutes. Next two slow down, and I’m not enjoying the large, wet ones. I like the ones that look overcooked. The dry roasted leaves are easy to consume and taste better, especially as the big sprouts get cold.

I get up to use the bathroom. I’m definitely satiated, but I’m not disgustingly full. I order two more sides of Brussel sprouts.

When I get have way through the next platter, I realize how nonstandard some of the portions have been. And I’m getting really bored of chewing, and the flavors are getting monotonous. I don’t want to eat Brussel sprouts any more.

Eva is disappointed. “Oh, come on. You can’t stop because you’re bored. You’re not even full!”

“Do you know how hard it is to eat cold Brussel sprouts when you’re over them?”

She gets a brownie sundae and can’t finish it. So, after five-and-a-half plates of Brussel sprouts, I finish her brownie sundae, drink the rest of my water, and finally enjoy a Red Lobster cheddar biscuit.

A woman holding a sundae glass enjoying a brownie sundae with five empty plates piled in front of her and some portions of brussel sprouts
Me, eating Eva’s sundae

Eva’s boyfriend put $60 on the table. my prorated winnings.

“That might be the dumbest thing I ever spent $300 on,” he said.

We all found that hard to believe.

Reflections on Health Improvement (and other updates)

Angel Ackerman 1 Comment

Part One: Reflections on Life Insurance

Earlier this month, I received a letter from my life insurance company. When I turned 50, my term life insurance policy could no longer continue at the rates I had paid for 20 years… after all, I am old now and the likelihood of my death exponentially increases.

I thought I had reduced the coverage– after all, the house is almost paid for now and the child is almost out of college so the need to have a healthy policy no longer seemed so important. Now I just want to make sure the child can burn me up and dispose of my ashes. Apparently, I never complete the process and find myself receiving a new letter that my premiums are almost doubling, after they almost tripled last year.

I called the company, spoke with an agent, and reduced my current coverage. But to maintain a long-term policy at stable rates, I needed to prove I was insurable. I scheduled an appointment for two weeks out to have bloodwork, urine and measurements done as part of a physical. For that two weeks, I drank no Diet Coke, ate no added sugar, avoided salt and processed food, ate lots of fruits and vegetables, drank ridiculous amounts of water and took my vitamins.

I lost seven pounds in that two weeks. All while thinking about the fact that life is so much harder when you’re not traditionally healthy. It doesn’t matter if you’re fat or disabled or diabetic. Part of the issue with my life insurance stemmed from the fact that I had an incident of Afib with RVR after a bad fall four years ago. Here’s some of that saga.

I believe, and my cardiologist agrees, that the Afib occurred due to bodily trauma. It was my second hard fall in two weeks that required medical attention and my body had enough. I have not been taking any medication, and my blood pressure has been fine. (And part of me still wonders if food doesn’t play an issue in that.)

But I find myself thinking once again about the gatekeepers who decide what our lives and our bodies are worth, and yes, I’m referring to life insurance and medical insurance companies. It’s exhausting to have to prove to corporations and to doctors what goes on in our bodies.

I finally had a chance to look up the numbers for my test results (and I downloaded the PDF and sent it to my doctor). Most everything looks really good and even the results in the cautionary zone of normal (all the stuff that relates to blood sugar and what not) are still normal. So, we’ll see if the insurance company declares me healthy.

Part Two: Service Dog Update

Yesterday while I was in Maplewood, N.J., with R. Diskin Black, the poet and writer and YA novelist who wrote The Night of Swaying Grass, (an experience I wrote about on my Substack newsletter here and hope to write more here in another entry) I checked my email while we were preparing to leave the diner where we had a classic New Jersey meal: eggs and hashbrowns at two in the afternoon.

I had an email from my service dog program where I have been on the waiting list for a couple years now. This might be the first post I made about filling out the application. 4 years and one month ago. They said then that the process took 4-5 years. This is a post about my early in-person interview. And here’s one from my most recent visit to the training center.

ANYWAY.

The email was from Deb Tack, the executive director at Susquehanna Service Dogs. I open it.

Hi Angel,

I am reaching out today to extend an invitation for a Meet the Dogs session. Please read the following information on how to sign uo and what to expect:

I froze. “Meet the Dogs.” Does that mean what I think it means? My heart skipped a beat.

Now, a few weeks ago, I admitted to Eva that I often felt like I was a failure because I haven’t been able to pay off a $20,000 personal loan I took out when I lost my job at Stitch Fix. It hangs over my head like a car payment without the car. I mentioned that in all this time I haven’t touched any of the money that I have saved to pay for my service dog (some of which came from that $20,000 loan) and that maybe that shows that I should be working harder to pay down my debts, that I do waste too much money, and maybe I should use some of that service dog money to reconfigure some household debts.

“But,” I said, “If I did that, the service dog people would tell me my dog was ready.”

So… Is my dog ready?

I didn’t finish reading the email. I mentioned it to Ray, who in his professional life was a lawyer. I offhandedly mentioned, “Of course, this could happen now. I have my little part-time job in a restaurant so I wouldn’t be able to bring a dog.”

“Why not?” he asked.

“It’s food service. I could bring the dog there to eat, but I can’t bring the dog behind the counter.”

“Isn’t that discrimination?” he replied.

“Put your lawyer brain away!” I told him.

We continued our outing, and checked the oil in my car with a dryer sheet from Food Lion, and read the email in the car, quickly, and forwarded it to Eva without finishing it.

I texted her.

I sent you an email. If you want to call and talk about it, give me ten minutes to find the highway.

Eva, the practical one, replied: I’m leaving for work. We’ll talk when you get home.

When I get home, I don’t have a chance to talk to Eva right away. I book an appointment for September 25, because it’s the only day that Eva and I can both go. It means I have to reschedule my day trip with another author, Geraldine Donaher, but I think she’ll understand. Or so I hope. Then– and only then– do I print and read the letter.

– What is goal of Meet the Dogs? The goal of a Meet the Dogs session is to begin to understand what type of dog you fit best with and what definitive task list our trainers will need to train your dog to perform. We intentionally invite more Partners than there are dogs available to ensure that we are able to make a match. Not every Partner will match during their first session, and some may need to come back for multiple sessions in order to find their match. Overall, our goal is to match you with a dog that you will be able to have a successful bond and work well with for many years to come. 

– What happens during a session? Members of the Partner Services and Training staff will meet with you for your session. First, we will spend time discussing any pertinent updates and then delve into which tasks and cues would be most beneficial, as well as places that a trainer should focus on taking your future dog to train. Then, you will have the opportunity to meet 2 to 5 dogs-in-training, work with each individually for a brief period and provide your feedback. 

– What happens after my session? Following the session, the SSD team will meet to discuss their observations of the interactions with each dog along with the dogs’ responses and strengths.  Approximately six weeks following your Meet the Dogs session, you will receive an email regarding whether you have received a tentative match along with information regarding Team Training. 

– Can I bring someone to the session with me? Absolutely- We highly encourage that a support person/s are present. While they will not interact with the dogs during the session, they will be able to be a second set of eyes, help with building the task list and take pictures and videos should you choose. 

As you can see, there’s a lot of “maybe” in this whole letter– and there’s more when you schedule the appointment. The confirmation reads:

“More potential partners have been invited than there are available dogs to help us ensure we find the right placement for each dog. We know everyone has waited a long time, and those who do not receive a tentative match will experience disappointment.”

No, I won’t be disappointed. I have no doubt the dogs will know. The right dog will find me and any potential disappointment will be flanked by resolution and commitment– that the closer I get to meeting my dog, the more I have to take care of myself, the less excuses I have, so that my service dog and I will have a good life together. When I think back to the animals in my life that meant the most to me, I didn’t pick them. They picked me.

And this dog– this dog is a working dog. This dog has to want to work for me.

Some things are worth the wait.

Some general background

I have applied for a light mobility service dog to improve my gait and help me recover from falls. Statistics show that walking with a dog automatically helps people with an unsteady gait walk better, and my dog will do small tasks of retrieval (fist aid kid, light folding stool), potentially carry items if I need my hands, get my phone if I need help, or pick up items from the floor if I can’t bend. Crazy to think that the steady walk of a dog, and being near it, could decrease my likelihood of falling.

The program with which I am working breeds their own puppies, sends the puppies to families for raising and basic obedience, and only when they are two years old can a dog ethically be cleared for light mobility work. The dog must be cleared by a veterinarian to be healthy enough, big enough and have the bone structure to do such work. If I understand correctly, once the dogs return from their puppy raiser families, they learn certain tasks ALL their dogs learn. Like how to walk with different gear.

And depending on the type of mobility gear– only certain dogs will do that work. A mobility service dog can wear a hard hardness, a soft harness with strap, or just a leash. The bulkier the gear required, the more likely a dog might not want to wear it. In my case, I would be fine with just a leash, though a strap might not be the worst thing.

But there is one potential hang-up for my dog… In my evaluations, if I remember correctly, we determined that while they train the dogs to walk on the left, my dog needs to walk on the right, and the ambassador dog I was working with did not like walking on the wrong side and fought me a little. Apparently, according to Eva, I walk like a drunk with the dog on the left and walk in a straight line with the dog on the right.

Once the dogs are tentatively matched– and the dog could still wash out so even that is not guaranteed– the dog spends time training for the tasks for its handler’s specific needs. Then, a few months later, the dog and its handler spend more than two weeks in an intense in-house training program.

So, it’s an exciting time, and either way, I’ll meet some cool dogs.

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.”

Disability Lit Review, part one

Angel Ackerman Leave a comment

Let me offer a bit of an author’s note on this one, or perhaps a caveat, that I only got five hours of sleep last night, and my body hurts today. This is the third night this week I got six hours or less of sleep, due to some fairly intense routine change that is kicking my ass. And the pain I am experiencing today is not my standard everyday pain, but similar pain in a more twitchy and unnerving form.

And this may lead to some of my more strident tones. Or perhaps I always feel my opinions with a certain sharpness, but ordinarily I present them after the application of a filter.

I will try to keep my aggressive aggravation to myself, but no promises.

Earlier this month, I drafted a “bird piece” for the Behind Our Eyes anthology, a collection in the works to highlight the members of the Behind Our Eyes email-based writers group for writers with disabilities. I joined the group a couple years ago after participating on the fringes through Nancy Scott, who, in cheap amusement and most things disability, is my partner in crime. I normally lurk in the group, but recently heard they were actively looking for bird stories. The anthology features a variety of sections and one themed block focuses on animals.

I wrote a creative non-ficiton piece about my Goffin’s cockatoo and I navigating disability together, with a present-day, present tense story of Nala plucking her feathers due to her anxiety and me trying to figure out why. The plucking led to her not being able to fly, which gave her a temporary mobility disability. So I used this present-day situation to frame flashbacks exploring why Nala was anxious, but also looking at my mobility disability and the similarities and conditions that made us good for one another. The anthology committee wanted just a bird story, so they’ll be publishing the present-day section of my interactions with Nala.

This was the first of two pieces I wished to submit to disability-associated anthologies. I have drafted the second, but that one is specifically for disabled voices to share what we wished the outside world understood. I revisited my first draft, and tightened it somewhat, and thought the piece sounded like an introductory chapter to my upcoming medical advocacy memoir. That piece has two themes– the beginning talks about how my family had too many problems for me to realize I was “disabled” which seques into the second half, about me finding out my body and assembling an adequate medical team.

Nan has been encouraging me to write more in the disability space, her paraphrased quote being that I could have a real impact there. And in my experience, there are two main types of voices in the world of disability literature. The most mainstream voice is the voice of the writer-first– commonly a writer who experienced illness or disability not from birth, with either some sort of privilege or talent. The second is the disability activist who is not a writer, but congenitally-disabled and fighting for their right and the resources to exist. (And I guess the third would be the hobby disabled memoirist.)

I find myself crossing all these categories. I have the natural writing talent, my background as a professional journalist, my credentials as an academic and historian, and the experience of a congenital disability. Yet, I have the privilege of being a white woman, and if I can borrow the term, I can “pass” as an able-bodied person if I focus really hard and am having a good day. I have the type of cerebral palsy that you might not notice or that might make you stare at my feet and knees.

This morning on social media, I saw a post from a disabled Iraqi/Afghan War veteran stating that he needed to retire his service dog as she had had a seizure. The man said that his career involved much travel and public speaking as an influencer and motivational speaker. I searched the internet for him and found a very basic web site, some YouTube videos and an Instagram, but no information about him or the experiences that lead him to be a motivational speaker.

Now, in everyday life, people with disabilities do not owe information or an explanation to anyone regarding details about their private lives or medical conditions. But if you build a career on your experience coming back from a disability, I think some of that information is owed to prove the validity of that expertise. (And if you are an influencer, a Google search should turn up some information about you.)

What I am about to say next is going to make me sound like an ass, and I mention to not to invalidate the experience of people with disabilities who fit the categories as I am about to describe– but the lived experience of a Cis white heterosexual male in the United States of America who develops a disability after voluntary service with the military is very different from the experience of a person who has never been able to walk, has a limb difference, total blindness or any of the multitude of disabilities that occur at birth.

(Add in family resources, and there’s another layer of complexity.)

Some people have more choices. Some people have more privilege.

ALL people living with ANY TYPE of chronic illness or disability deserve the same respect, but one must understand that they all come from different places. As all humans do.

This has led me into a brief literature review of the disability space, one I have only explored via finding books written by ordinary people on their experience with disability. My list included the third anthology from Behind Our Eyes and a service dog memoir by one of its members, Peter Altschul. I have a collection of books with connections to cerebral palsy: several modern memoirs by Tylia Flores, a pre mid-20th century memoir by Dubliner Christy Brown, and Karen, a parent’s cerebral palsy memoir that takes place about 10 years after Christy Brown, and then poetry and academic work by Jennifer Bartlett. And a highly academic poetry book by blind poet Susan Glass.

A copy of A Disability History of the United States

I recognized my need to diversify… especially as I start more work on my medical advocacy memoir and consider making more deliberate strides into this space.

Here’s what I ordered:

  • A Disability History of the United States by Kim E. Nielsen. I believe this was Nielsen’s Ph.D. thesis in history. In her introduction, she mentions that she is a white woman of certain privilege, and she ended up in this space by accident, with no connection to disability. Then, shortly after receiving a publishing contract for this book, her teen daughter contracted an illness that made her a wheelchair user and gave her a more personal glimpse of the issues she had talked about.

I finished this book yesterday, and it’s definitely an important work, exploring hundreds of years of attitudes and events about disabled bodies. Nielsen aligns disability rights with other civil rights, for women, for Blacks, for gays. She presents the idea that any body that is not strong, healthy, heterosexual, white and male faces the same discrimination and lack of belonging in the American social structure. And ALL of these bodies are disabled and deemed as unsatisfactory as part of the capitalistic labor machine.

It’s an important work that shows how ideas about disability evolved and how legal status/rights have changed.

Today I started:

  • How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva. This is Johanna’s fourth book, and the bio on the back lists them as a Korean American writer, artist and musician raised in Los Angeles raised by a family of witches.
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.

Their introduction mirrors a lot of the same concepts about the issues disabled people create for American capitalism. Their experience though is one of disability after chronic illness. I have only reached page 28, and Johanna mentions a decade of chasing a diagnosis, but states that they inherited chronic illness from their mother and grandmother– which leads me to wonder why a diagnosis was such a mystery?

I suspect the reality is that Johanna had trouble finding a doctor to label the diagnosis officially, which is the “doctors are idiots” and the “American healthcare is broken” problem not that Johanna didn’t know what was wrong.

I hope Johanna eventually shares their disability with the reader, but as of yet it has not happened, and again– I know no one is entitled to know the private details of another person’s medical situation, but it is important when one is standing in a public space claiming authority regarding such issues.

The other two books on my new acquisitions are:

  • Fifty Years of Walking with Friends, another guide dog memoir by BOE member DeAnna Quietwater Noriega. I added this one to the list because of Noriega’s Native American heritage.
  • Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Bessler Watts. Julia is a queer rabbi. This book was recommended and you had me at queer rabbi.