Wednesday 5 October Need a Refill
I need a refill. Every time I take my medication—see the dwindling number of pills in the bottle—I think, I need a refill. Then I put the bottle away and no longer hold the thought in my head. So the next day I take my medication, see the dwindling number of pills in the bottle, think, I need a refill, put the bottle away and forget until the next day.
Until the day there is no medication left. Dang, there’s no medication left, I think. But I have work to do so I forget about the medication and begin to work. The work is not going well. Why is the work not going well? I think. But I have work to do so I continue to work. The work is not going well. Why is the work not going well? I think. Wait. I ran out of medication.
So I stop working and call the refill requests phone number. This reminds me that I’m worried I’m not going to get my medication because 1. my doctor changed jobs and is no longer my doctor and 2. last time I took a drug test it was positive for opiates. So I make another call to my doctor’s office while I’m thinking about it and the receptionist says, “You called for a refill seven minutes ago, you have to wait and see what the doctor will say,” without listening to why I’m worried or why I have to call now while I’m thinking about it. I feel bad, but what can I do? I wait.
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Wednesday 20 July Drug Test
The nurse handed me a cup with an orange screw top lid. I didn’t need to pee a little into the toilet before peeing into the cup, but I did it anyway, used my internal muscles to cut off the stream, abdomen bulging as it contracted, then lowered the cup between my legs. The position always odd, but I knew it was in the right place (not like the first time I gave a urine sample, held the cup too far forward, peed over the side of the cup and my hand.) And the not unpleasant feeling of pee filling the cup, not a hot beverage nor room temperature water, but perfectly body temperature liquid. I screwed on the top, washed my hands, gave the sample to the nurse.
I hadn’t gotten a prescription in a while, overdue for a drug test. My last refill was in April, when I had scheduled an appointment but was too distracted by life’s minutiae to remember it. I scheduled another in June, and, in sheer relief at having secured the appointment, forgot to attend. They weren’t simple forgettings; the other things in my life felt urgent, and taking a drug test did not feel urgent (because I already know I don’t take other drugs.) It only feels urgent when I need my medication.
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Federal Gov’t, Medical Inst., and Me
Adderall is a Schedule II federally controlled substance. Legally this means the federal government classifies it with a high potential for abuse, but an accepted medical use. Practically, this means anyone prescribed Adderall must submit to drug tests at their doctor’s discretion. This identifies if a patient is A. selling the drug instead of taking it as prescribed (if the test is negative for Adderall), B. abusing the prescribed drug (if the amount of Adderall indicated is more than prescribed), or C. using other drugs. The first, an attempt to keep the drug from those who would abuse it. The latter two, for doctors to diagnose and treat drug abuse and/or addiction. However, this implies patients cannot be trusted to tell the truth. And it is true some patients lie to their doctors. And it is complicated to treat drug abusers and addicts, both on an individual and societal level. I understand but feel humiliated by not being trusted to report my experience. The situation infantilizing, paternalistic: we are doing this for your own good; you are just a drug addiction waiting to happen.
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Thursday 6 October Schedule Appt.
My phone vibrates as I sit down to a meeting. I’m expecting a phone call, I think, and grab my phone, abandoning my things in the meeting room.
It’s Tyler. She says, “I’m sorry but we can’t refill your medication until you get established with the new doctor.”
“Okay, when can you get me in?”
“She doesn’t have any openings until November 21.”
“But that’s like two months from now! I can’t go without medication for two months!” Later, I would do the math; it would be 48 days without my medication.
“I’ll talk to the doctor and see if there are any options. Maybe she’ll give you a temporary refill. In the meantime you can call scheduling every day to see if there are cancellations for a sooner appointment.”
“There’s also the issue that I tested positive for opiates–”
Tyler cuts me off, “Yes I remember. You talked to me about that.”
“Well. Is the doctor going to give me a refill?”
She says, “You’ll have to see what the doctor says. For now let’s schedule this appointment.”
“Hold on, let me grab my planner.” My planner is trapped in the meeting room. I crack the door open and to my relief the meeting has not started, others are chatting. I bring my phone call into the room. “You said November 21?”
“Yes.”
“That works for me. Thanks so much Tyler.” And the phone call ends. And the meeting starts. And time continues its passing.
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Monday 1 August Drug Test Results
I received two letters. One from my doctor said I tested positive for opiates which might be a mistake of in-office screening and she’d send it to a lab. One from the office, after my doctor left, said the lab said the opiates were not a false positive.
What the hell, I thought. What the fuck, I thought. I didn’t take any opiates. And then, What does this mean? Can I still get my medication? Characterizing this as thought feels false, I only remember panic.
I called my doctor’s office. “Hi, can I talk to someone who can address this medical concern I am freaking out.”
“Sure. We’ll have the nurse call you back. In the meantime you can call this number.”
The other number knew less than the reception desk.
I called my mom. I was having a panic attack, crying and hyperventilating. What else was I supposed to do? My mom calmed me down. Otherwise I could only wait for the nurse.
I distracted myself. (YouTube videos, podcasts, whatever fills my mind.) Eventually the nurse called. This is how I met Tyler, although our entire acquaintance has been via telephone.
I told Tyler that my drug test was positive for opioids and that I hadn’t taken any opioids and that I was worried I wouldn’t be able to get my medication and that I couldn’t ask my doctor because she was no longer my doctor but that I really needed my medication to function. I may have started crying again.
Tyler did not say she believed me that I had not taken opioids. I understood she did not say this because it was a restriction of her profession. But she said, “I’m sorry, that sounds stressful,” and “I’ll do everything I can to help you.” She explained the prescribing doctor determines whether to prescribe a medication, so I would need to wait to see what my new doctor would say.
I asked, “And if that doctor refuses to prescribe my medication I can find a new doctor?”
She affirmed this, although I was inventing future problems. But because I still had medication, it wasn’t something to worry about now, and the office would call when the new doctor came. At least, I think that’s what she told me. Given I didn’t get a phone call when the new doctor arrived, I am doubtful. Not of my memory– which is faulty in some respects but reliable in others; and remembers dialogue well– but it would be laborious for the office staff to call all patients who needed the new doctor. I also didn’t expect Tyler herself to remember my needs and call when the new doctor came. Mostly I didn’t think these thoughts when I talked to Tyler. She reassured me, so medication no longer seemed an urgent problem. I didn’t think about it again until I was out of medication (when my memory failed me.)
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Response to Federal Gov’t
Adderall addiction is less likely in people with ADHD than people without ADHD. ADHD is in part a disorder of the neurotransmitter dopamine; ADHD brains 1. produce less dopamine 2. use available dopamine less effectively and 3. reuptake (reabsorb) dopamine before it can be used. Dopamine affects reward and pleasure– thus people with ADHD often do not process long term consequences (both positive and negative). Our brains are compensating for a dopamine deficiency so we seek immediate pleasure. Psychologists call this “interest-based attention,” which describes a physiological inability of ADHD minds to focus on what does not interest us.
ADHD is a misnomer because it is not an attention deficit but an attention disorder: we cannot focus on some things, but we also suffer from hyperfocus– when something interests us we cannot tear our attention away, which may lead to forgoing eating and/or sleeping in favor of what devours our attention. (Hyperfocus is how I write about ADHD without sources. This information has collated inside me for years. I research and read studies on psychology and neurobiology, not only because it is relevant to my life and helps answer questions like why is this happening? and why am I like this?, but because the subject captivates my mind, holds me in thrall.) Hyperactivity refers to stimulating our brains in other ways to release dopamine and make focusing easier. Psychologists categorize this in two ways, “hyperactive” and “inattentive” (which can also manifest as “combined”); in the former, stimulation is external (often physical) and in the other stimulation is internal (i.e. daydreaming); and though this seems a clear distinction, socially it is not. What is perceived externally, what disturbs and distracts others? I run my fingers along my scalp (a physical action and sensation.) It feels good. I could do this for hours except I feel silly for “wasting my time.” But since this behavior is not disruptive, it is not seen as hyperactive. A gendered aspect: disruptive behavior is somewhat more socially acceptable in boys than girls.
But I digress. I was saying Adderall addiction is less likely in people with ADHD because it helps in dopamine production and distribution, so it remedies an existing deficiency. For those without ADHD Adderall floods the brain with excess dopamine, giving them a pleasure high they may become addicted to. However, people with ADHD are more likely to abuse or become addicted to other drugs, including alcohol: because it is difficult to get medication to treat ADHD; because the world is overwhelming and difficult to navigate with how our brains work; because I need the world to be quieter, my brain quieter, myself more capable (I am so incapable), and I know, I know, what it is like to need something, god, anything. The difference between myself and an addict is I have access to resources, treatment, medication.
I am comparing myself to addicts here because the federal government did it first. When I mention this in conversation, others respond in ways that both lack compassion for those who abuse drugs or suffer from addiction, and do not acknowledge what else might cause drug abuse/addiction. When in college, not older than 21, I would mix whiskey in coffee and take it to class. I abused alcohol: everything was overwhelming, my feelings too big for my body, I wanted the fuzzy distance a buzz can bring. I knew this was unhealthy. I was perhaps abusing caffeine, one cannot control a cup of coffee’s dosage: I was exhausted, I wanted to stop feeling tired. (No amount of caffeine made me stop feeling tired.) I didn’t want this to become an addiction. I had the privilege to seek treatment, and now take medications that bring me peace and stability (which I never had with drinking.) Medications I am not at risk of becoming addicted to. I need them, yes, they help me feel better; this is not addiction. But treatment should never be a privilege. If the federal government wants to prevent addiction, they should make healthcare easier to access. That access to medications is restricted due to fears of drug abuse, and lack of access leads to drug abuse—recursive logic.
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Monday 10 October Wretched Bureaucracy
I get a phone call from a nurse (not Tyler) asking me to get my medical records from my previous psychiatrist. I moved from Arizona to New Mexico for graduate school and I haven’t seen her for over a year. I call the behavioral health clinic and the receptionist tells me they don’t keep records in the office past a year and I’ll have to call the medical records department. I call back and this time follow the phone tree to medical records and they tell me I have to sign in person to get my medical records. I am not going to drive to Arizona. They say the only other way to get my medical records is for my doctor’s office to fax over a request form, signed by me. I call my doctor’s office again and get a different nurse (also not Tyler) and when I tell her the office has to send a request form, and I have to come in to sign it, she says, “That’s all?” as if I’ve wasted her time. At least I’ve only wasted 5 minutes of her time as opposed to the hour I’ve wasted playing this phone charade. What is the point, when I know I am not going to drive the 15 minutes to and 15 minutes from my doctor’s office to sign a paper? I am simply not going to do it. Because it will not get me a sooner appointment, and it will not get me medication sooner, it’s just something that the doctor wants. It is meaningless to me and takes more energy than I have to give. What is the point?
I also asked the first nurse about scheduling a sooner appointment but she said I have to call scheduling. I call scheduling, now that I have been reminded to. They pick up and I say, “Hi I’d like to schedule a sooner appointment with Dr. S.”
“Dr. S.?”
“Yes.”
“Soonest we have is the week of November 21st.”
“I already have an appointment then.”
“Oh. Okay.”
“Okay. Thank you. Bye.”
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Some Context
I’ve waited to reveal the information that I am a graduate student, worrying it somehow invalidates my story. It’s an odd social position. Access to higher education is a privilege, and many think academics out-of-touch. In the United States, higher education costs are obscene, so we who pursue it either have money (which is what most assume); or resign ourselves to a lifetime of debt; or struggle to make ends meet; or this otherwise begs the question how one can afford it. And our educational institution pays us a pittance, like it considers us disposable: I asked my uncle how much he thinks I earn as a graduate worker, teaching two classes a semester, with my tuition covered; he said, “24k a year;” I laughed (dark laughter of absurdity), “Try subtracting nine thousand from that.”
I come from a family with money, and, undeservedly, have access to money. (There is no rational reason I can afford to go to graduate school instead of anyone else.) Some benefits: the ability to access medical care, to pay costs arising from my status as fuck-up (parking tickets, late fees, other social taxes of disability.) But I also hold onto money knowing I have never been able to work five days a week, and I don’t foresee ever being able to. I think the 40-hour work week is inhumane, but some manage to have lives despite it; I know I never will. I know I only live due to the privilege of wealth, and I would give it up in a second if it meant everyone could live without fear of poverty, had the same access to care (medical, familial) that I do.
I waited to reveal the medication I needed to refill was Adderall; I did not mention it until the third section, trying to avoid stereotypes about it. It is associated with drug abuse and addiction not only because it is a controlled substance, but because it is chemically similar to meth. It also has a stereotype as a study drug, that it’s just a pill shitty college students take as they cram for a test, which plays into my reticence to say I am a student. I need Adderall even when I am not a student.
After I revealed it is Adderall I take*, I waited until the sixth section to make a connection between it and ADHD. The connection is inextricable, but most people’s conception of ADHD is so misinformed that I wished to avoid association until I could use description of my experience to communicate what it’s like. Some think ADHD isn’t real, or only children have it, or only boys have it, or think it’s overdiagnosed— ‘Kids these days with their medications and disability accommodations, back in my day we just dealt with it and we were fine.’ Okay, there’s some truth to that, not that ADHD is overdiagnosed (it is underdiagnosed, actually) but that things have changed. We live in a time more overwhelming than ever; ADHD traits historically might not have interfered with life as much, or even been advantageous; but now the world is more complicated, not made for us. Many don’t recognize ADHD traits, but instead think we are weird or a spazz, annoying or incompetent, or lazy or stupid or making excuses, not trying hard enough. Most underestimate the effect ADHD has on our lives.
*I take other medication to treat brain stuff but they are not controlled substances and I mostly do not have problems accessing them. That said, the U.S. medical system has many failure points so I have had some problems, but I can only allow so many digressions. Part of why it is more difficult for me to get Adderall is that I have to call a different phone number than for my other medications, which come with months of refills. Since Adderall is a controlled substance, I’m technically not getting a refill, but asking my doctor to write a new prescription every month. It may seem inconsequential but with ADHD any difference in systems, patterns, and routine can be the difference between getting something done and not getting something done.
The first time I went without Adderall, last spring, I had misplaced the card with the refill phone number on it. By “misplaced” I mean I knew where it was but it was in an inconvenient location so I did not retrieve it: I had just moved and it was still in a box. And unlike my pharmacy, I could not google the business phone number. So I went without for a week or two. Then, crying, I wondered why the last week or two had been so difficult and remembered I did not have my medication. So I dumped the box in question onto the floor, found the card with the phone number, and got a refill. And entered the number into my phone for good measure. And the contents of the box remained splayed out on the floor for at least another month, a source of stress but I had too many thoughts in my mind to attend to it so it contributed to the clutter in my mind but I was too overwhelmed to do anything but the mess was overwhelming, and so the sprawl on the floor went on, in aeternum, amen.
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Tuesday 11 October My Responsibility
As a graduate student my responsibilities are reading and writing for classes and teaching two sections of gen ed composition. When emailing my professors about my situation, thankfully, they understand; if I must, I can do all the classwork in the last three weeks, but it is unpleasant. People with ADHD are serial procrastinators because: 1. we’re not supported in developing systems to work continuously and on time 2. we use norepinephrine (a hormone/neurotransmitter that triggers hyperarousal—fight or flight) to supersede dopamine deficiencies, which a time crunch generates. But using norepinephrine instead of dopamine is mentally and physically taxing; using norepinephrine, brains do not record information as effectively. If attending school to learn, why must I depend on behavior that makes learning harder and worse?
But I can suffer my education made substandard; I cannot put off teaching work; it becomes a problem for my students. On Tuesday I am lecturing on research, though this is not my strongest point of instruction. I need to write a lesson plan so I remember what to cover and how to explain it. I take Friday off as a rest day, so I have Saturday Sunday and even Monday to work. Saturday passes and I have not done it. Sunday passes and I have not done it. Monday passes and I have not done it. Where the hell has my time gone? I wake on Tuesday and I can’t do it, a wretched inability inside me, my chest tissue paper torn to shreds. I have to cancel class. At least I have the rest of the week off for fall break to get myself together; but for now I must sit very still and wait for my soft, torn-up insides to stop taking space in my chest.
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Wednesday 12 October This Again
I call scheduling for a sooner appointment. They pick up and I say, “Hello, can I get a sooner appointment with Dr. S?”
“Sure, just let me check the schedule.”
“Okay.”
“Looks like we’re scheduling for November 23 at the moment.”
“I already have an appointment before then.”
“So you don’t want me to schedule you for the 23rd?”
“No, thanks for your help. Goodbye.”
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Tuesday 19 July A Mistake
I thought eating the poppyseed muffin might be a mistake before I ate it but I knew if I did not eat it I would not eat anything else. I didn’t know if the urban legend that eating poppyseeds can cause one to fail a drug test was true. But now I know it is true.
Eating is difficult. No, making food is difficult. No, they’re both difficult. The problem with making food is that in order to make food I have to start making food and starting anything is always the hardest thing I’ve ever done. The problem with eating is that it’s overwhelming; food has all these textures and flavors and smells. Adderall helps with starting things and it helps with overwhelm but I hadn’t had spare Adderall in a while. I must eat what I am able to prepare and I must eat what I am able to eat because not eating is worse. Rather, I must tell myself not eating is worse because otherwise I wouldn’t eat; not for any other reason than it seems like too much effort to bother.
(In retrospect, I wonder if not eating really would have been worse. I would have felt lightheaded, dizzy, depressed, hopeless, fatigued, tired for a while– that old familiar feeling– but I wouldn’t have jeopardized access to my medication.)
I do not have an eating disorder, but this is called disordered eating. It goes astonishingly unacknowledged in literature about non-eating-disorder mental illnesses and neurodivergences. In literature on ADHD, if these subjects are addressed it’s about children with ADHD. A disturbing lack of resources for a constant issue: one must eat three times a day, 365 days a year, every year of my life. This is an overgeneralization (a cognitive distortion); not every meal will be a crisis, but perhaps a third of mealtimes will be difficult for me. At those odds, it’s better to be prepared for the inevitable.
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More Context
I don’t mean to romanticize either the past or pastoral life but think how many distinct bills one is responsible for in contemporary life. 1 rent, 2 water, 3 electricity, 4 gas, 5 internet, 6 cell phone, 7 renter’s insurance, 8 medical insurance, 9 car insurance, perhaps 10 car maintenance, and different places for engine checks and tires, renew car registration and get a smog check; frankly, my brain struggles to keep up with this let alone whatever else a person may be responsible for; grocery shopping, cooking, cleaning, having clothes to wear, buying cat food. As a single adult I’m responsible for it all, how did we get here? In the past extended families living together may share domestic responsibilities, but then post WWII we started living in smaller nuclear families, and even that falls apart as we start families later and spend time living alone, struggling to manage, where’re our support systems?
(It is perhaps misleading to call myself a single adult, given how I rely on my family: after college I lived with my parents, normal enough; but when I moved out I moved to the same city as my brother, relied upon him; and when I moved to New Mexico I knew it was unwise to live without support, so my sister moved with me. What would I do if they weren’t here? What will I do if my life takes me further than they are willing to go with me? In my worst hours I cannot help but wonder, am I a burden?)
Recent developments in human history, such as the internet, and don’t let me start on the prevalence of screens, information and images and sound blasting at me 24/7, and it takes time to process but no here’s the next thing not a moment of rest not a moment of silence but constant cognitive stimulation creating static in the brain, cognitive tinnitus, it wears me down when I try to sleep there’s that noise there’s never peace. This is all new for us, as a species we’ve lived for thousands of years and we expect ourselves to understand technologies invented and societal changes from the last 200, 100, 50, 10 years. Listen, we are stupid babies putting strange objects in our mouths.
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Friday 14 October Fuck no I can’t anymore
I sleep until noon. Fuck, without my medication I can’t do anything except sleep. This is a problem. I call scheduling for a sooner appointment.
“Hi, I’m calling for a sooner appointment.”
“Who with?”
“Dr. S.”
“Let’s see, we’re currently scheduling for December 1.”
“I already have an appointment on November 21! Are you sure you don’t have anything sooner?”
After a pause, “No, that’s the soonest.”
I try not let frustration color my voice, but I do not succeed, “Alright then. Thank you.” And hang up.
My time is running out. Next week I have to be back at school. Without medication I can’t focus enough to start tasks (initiation) which is part of executive dysfunction. Executive functions, carried out by the pre-frontal cortex, are the most complex cognition (they coordinate other thinking skills), and include planning, working memory, self-control, focus and attention, time management, etc. All things people with ADHD struggle with. Because executive functions operate with dopamine.
Knowing why my brain works this way isn’t helpful in solving the problem because my solution is to take my medication. It’s unfair that my medical providers are denying me medication for 48 days. Because Adderall is a federally controlled substance I cannot access it, and trying to access it can be seen as drug-seeking behavior; and because my problems are cognitive, then it is okay for me to go without medication, because my physical life is not in danger, never mind that if I had less understanding professors I would fail my classes, and if I had a different job I would be fired (and if my life were different, losing my income could be life-threatening.) But even though my life is not in danger does not mean my suffering does not matter; I’m still in school, and I have my job, but I can’t work, which disrupts my life.
And throughout my interactions with the medical system, largely with people whose jobs are to answer phones and not to provide medical care, it’s not that people deliberately think bad of me, and it’s not that my medication is maliciously being kept from me, but that nobody cares about me as a person, and nobody cares about my medical problems. It is the cruelty of indifference.
Every time I call the office there’s a message, “If this is an emergency, hang up and dial 9-1-1.” I am having an emergency and 9-1-1 can do nothing for me. I contemplate calling a suicide hotline but I am not suicidal, I just want my medication.
I call my mom, because I am upset and crying and she cares. My mom is dismayed, but can only provide suggestions: could I go to another doctor’s office? I have excuses why I cannot: who’s to say another office would have availability; or I would not find another that accepts my insurance. But the real reason I can’t do this is that I can’t do basic tasks; I can’t search for another doctor’s office, nor go through the steps needed to obtain an appointment.
My mom suggests I contact someone who will listen to my problems and help me resolve them. I am determined (though still crying) to demand I talk to Tyler. She is the only person who can, rather, is willing to help me.
I call the doctor’s office, “Hi this is Echo, can I talk to Tyler?”
The receptionist says, “Sure, but I think she’s busy right now. Can I have her call you back?”
“No, I’ll wait, thank you.”
Not even a minute later Tyler picks up the phone—this is so much faster and easier than I thought it would be.
I tell her, certainly crying, “Tyler, I can’t do this, I can’t go without my medication. It’s really bad.”
“What symptoms are you having?”
(And this question brings more relief than anything. Finally someone addresses my acute medical problem.)
“I can’t work, I can’t do any of my work, I can’t do most basic tasks, all I do is sleep.”
“Can you be more specific? Is it difficulty focusing?”
“Well, I try to work and can’t… I just… can’t. I get hungry but when I go to prepare food it’s overwhelming, so I don’t eat. Everything is completely exhausting, so I go back to bed and sleep.”
“I’ll talk to the doctor about this. Maybe she’ll let you see one of the residents. I’ll figure something out and call you on Monday.”
I trust Tyler to take care of me.
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Monday 17 October Processing Thoughts
Since Adderall is a stimulant, I decide my best strategy for getting by without is drinking coffee, also a stimulant. Stimulants affect the central nervous system, triggering release of dopamine and norepinephrine, aid in alertness and focus.
I arrive on campus early to buy coffee, since I don’t have any at home. I ran out of grounds and never bought more. But I’m pleased it’s time for autumnal flavors; I can almost pretend I am buying myself a treat instead of desperately hoping this stop-gap measure will work.
In class, I can process what’s said, but I don’t feel like participating as usual, more likely due to emotional toll than lack of medication.
My phone vibrates. At first I don’t notice it but then I process the sound and think I’m expecting a phone call and grab my phone, simultaneously trying to leave class as speedily and quietly as I can while also answering the phone so it won’t go to voicemail while also not answering the phone because my phone is always on speaker so I can understand phone voices (a frequent comorbidity of ADHD is sensory processing disorder) and I don’t want that noise to disturb class. But I burst through the door to the outside autumn chill and I can process what is coming from my phone and I say, “Yes, this is Echo.” It’s Tyler.
“Hi, Echo. We have another new doctor joining our practice and you would be able to see him sooner than Dr. S.”
“That’s great! When can I get an appointment with him?”
“Well, first I wanted to check if you feel comfortable with seeing a male doctor.”
I have multiple thoughts at once:
| It doesn’t matter. I need an appointment now. I need my medication now. I need to see whichever doctor will see me soonest. | I intentionally haven’t had a male doctor since I was a child. I need my doctor to listen to my experience: it’s part of being a transgender person seeking medical care. Due to how society is gendered, women are taught to listen more than men. But if my experience with drug testing has taught me anything it’s that medical professionals may not trust my experience regardless of gender. So it doesn’t matter. |
and with the flood of thoughts I pause and don’t register how I respond but I think I say, “Yeah, it’s fine.”
Tyler takes my moment of processing to mean I am reluctant to see a male doctor and assures me I do not need to see him.
I reiterate, “Really, it’s okay, it doesn’t matter,” but she persists in assuring me.
I interrupt again, “No, really, I need to get my medication, so I want to see whoever can see me soonest.” It’s cold out and I’m pacing to keep myself warm.
Tyler gives me some final assurances that I can ask for a different provider. I am annoyed at having to reiterate my decision, but Tyler has done so much for me that I feel I should be grateful she cares about my comfort. She says Dr. W still has to fill out paperwork, but she’ll call when everything is ready.
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Tuesday 18 October The Worst Class
It’s time to teach the class on research, I cannot put it off any longer. I want coffee before I teach and I arrive 10 minutes early to get it but the line for the café is so long that I worry I won’t have time before I start class. I stand staring at the line, mass of students. If I were a student I could show up late to class but for an instructor it’s not a good look. I feel a wretched self-importance, that my need is more urgent than theirs, but of course I don’t know anything about their lives, and it’s our cultural custom to give services sequentially, not thinking of an individual’s need or circumstance. And if we did, who would judge, who would arbitrate most in need?
Although I have a page of notes, I can’t focus. My thoughts are not following in sequence, I trail off, my mouth dropping its offering of words. My voice dull and monotone compared to my usual bright chatter. I speak louder, as if volume will make up for my deficiencies. It’s the worst class I’ve ever taught. I’ve told my students about my situation, so they know why class is like this today, why I am like this. I see pity in their eyes, sympathy for my disability made overt.
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Saturday 22 October Time Blindness
Another week passes me. I’m uncertain how time moves, I check the time and then I check again and it is hours later and I do not know what I have done. I can try to backtrack: I know I went to this class; I know I managed that task: but there are so many hours. What have I done with them? An hour like an object I have misplaced except an object is concrete, has certain solidity, exists in physical space, and I can navigate physical space in a way I can’t navigate amorphous time.
I draw a day in my journal, tangible object; give its 24 disembodied hours each a patch of paper to reside. If I record the hours maybe I can stop losing them.
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Monday 24 October The Feeling of Being Unmedicated
Today I’m teaching poetry to a peer’s intro to creative writing class. As one of few poets in the program, I’m a de facto expert on poetry, and I delight in sharing my love.
I finally have coffee grounds and am relieved to not have to think about going to campus early to get coffee. I just show up, stimulated and ready to teach. I begin by saying I have ADHD so I’m going to write on the white board and go on tangents but generally follow my lesson plan but also to interrupt me with questions because I don’t like when I cannot interrupt. And I’ll ask them questions to respond to their understanding of poetry.
I tell them this because it takes but a minute, helps students understand my pedagogical approach, and here I’m not worried about stigma. I feel safe being myself in a classroom and my credentials as a poetry expert will soon become clear. In this, my ADHD is an asset: poetry is something I care about, know about, get excited about. That interest-based attention.
What is the difference between writing poetry and prose? In one sense, nothing. It is writing. But there must be some difference because we collectively understand it as different. Firstly, it looks different, broken in lines. How does a poem appear on a page? What effect does this have? But, since prose poems also exist, what else is there? A difference of priorities, aesthetics, and values. Literary devices, sound work, form, image are all concerns of prose, but not as much as they are of poetry, which as a compressed form has more of these per inch of text.
There are two hours until my next class. I treat myself to lunch because I did a good job. (Later, a student would stop me and say, “Are you Echo? You gave a really good poetry lecture.”)
I feel fatigued already, at 2 p.m. It takes more energy to do something outside of routine. I get a second cup of coffee. I return to my office and stare into the middle distance for an hour. I go to class.
The second cup of coffee does not help me focus. I am jittery and impatient: people talk too slow; the air in the room is too still; my legs bounce of their own accord, I am making the floor shudder; I try rocking in my chair instead, but it squeaks rhythmically. I am being annoying, I know, but I can’t stop myself. I would feel better if I could reach into my pen bag, grab a pen, open my journal, and begin drawing. But I can’t do it. No, my hands betray myself, they won’t do it.
(Having a cognitive disability, I struggle with “can’t”; struggle with people who cannot understand my “can’t”, with my physical inability coming from my own mind. It’s hard to even believe myself, and if I don’t believe what is happening to me, then how can I hope another will believe, regardless of my best efforts to explain? The part of my mind that thinks thoughts isn’t connecting with the part that acts. I’m moving; bouncing, rocking; but it is out of my control. Hyperarousal, the biological state of norepinephrine flood, what we call “fight or flight”, can encompass many responses, including “freeze”. I can’t move. I’m physically incapable of moving.)
For the last part of class we write. Although my laptop is open in front of me I can’t put my fingers to keys and type. The room is too still. Even if I could my thoughts refuse to come in any type of order, my thoughts refuse to come in any type, my thoughts refuse to come, my thoughts refuse. Perhaps I could write by hand instead? The pen bag, the pen, the journal? Nope? My hands remain traitors? It’s fine, I definitely wanted to spend this time staring at the ceiling.
As I stare at the ceiling, I realize this feeling is familiar, though I haven’t felt it in years. This is the feeling of writing an English paper in high school; when I would stay all night in front of the computer, waiting for something to happen, but nothing ever happened; or it happened so slowly as to be imperceptible, one sentence every ten minutes, one bullshit sentence every ten minutes or so. This is the feeling of being unmedicated.
The professor asks how writing went and I explain my feeling. (Because I am writing about the institutional lack of access, the rhetoric of being positioned against my own needs, the embodied knowledge perceived as academically invalid. I am writing about not having my medication; I am writing this.) And the professor, who is kind and understanding, says you should write that down before you forget. I could scream. Did I not say the feeling of being unmedicated is the feeling of being unable to write? Also, as if I could ever forget: my mind holds onto emotions; and even if my mind forgot, my body would never forget; if, no, when this happens again my body will conjure the sense memory of all the times it felt this feeling before.
When I get home, the second cup of coffee does not let me sleep.
From a neurobiological perspective, what happened here was the stimulant (caffeine) released too much norepinephrine and not enough dopamine. A year after I started taking Adderall, I wanted a different medication. I don’t like how it makes my heartbeat loud; I can feel my pulse thrum through my body, can hear it in my ears. Cognitively, it was only moderately effective, we (my psychiatrist and I) could do better. I liked how Ritalin affected my brain, but it gave me such severe nausea that I could only eat crackers the week I was on it. Any extended-release stimulant made me sleepy, zombie-like, brain static and body lethargic. We opted not to try any medication that would lower my blood pressure; my blood pressure is naturally low, so we didn’t want to risk me having fainting episodes. (Adderall raises my blood pressure, bringing me to “normal.”) We also tried a norepinephrine reuptake inhibitor which made me restless, anxious, and I didn’t sleep the week I took it: the feeling slightly like not being able to sleep after drinking too much coffee. I stuck with Adderall; we could not do better.
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Cognitive Points of Failure
- No trigger—the psychological definition of a trigger is a thing that makes you think of a thing. In discussions of anxiety and PTSD, may refer to what causes panic attacks, but the word is value neutral. My planner triggers me to think about what I need to do. Creative writers also use this word to describe what causes the writer to write, what propels the speaker to speak, notably in Richard Hugo’s book The Triggering Town. I frequently write in response to barriers I encounter, trying to understand them and how to overcome them.
- Trigger but no thought—how many points of failure in processing sensory input? Take hearing, for example: a sound vibrates your eardrum, resounds in your middle ear, and knocks against three tiny bones in your inner ear; this mechanical stimulus transforms into what can be carried by your nervous system in a process called transduction; nerves transmit the input to relevant areas in your brain (for sounds, mostly the temporal lobes); then your brain must process the sound to perceive its duration, intensity, location; if it is language it must further be decoded into words, syntax, meaning; then, the information sent to the pre-frontal cortex to decide how to respond to it. But if your pre-frontal cortex is already working at maximum potential, engaged in focusing on something else, it may simply reject the trigger; I can feel this happening in my brain, someone speaks to me but I can’t respond because I am busy thinking.
- Aborted thought—the doorway effect is when you walk into a room and immediately forget why you entered the room. The doorway signifies entering a new space and your brain resets your working memory for that space. My mind is a house with many rooms, and my thought is constantly entering a new room and leaving previous thought behind. I write with elements of separation; sections, drawn lines between sections, bullet points, even poetry’s line breaks; it feels like how I think.
- Thought but no action—perhaps the executive function I struggle with most is initiation, the ability to start tasks (at least, I feel I struggle with it most, due to how long I spend thinking about things I need to do, knowing I need to do them, and being unable to start.) This can happen for many reasons, such as the inability to automatically break a task down into smaller steps. When I explain I can’t do something, others’ response is usually, “Well, just do it,” which is phenomenally unhelpful and makes initiation problems worse due to frustration, but one winter break I complained to my brother about my inability to complete a mountain of grading and he said, “Did you open the document on your computer?” which enabled me to get back to work. But breaking tasks down into steps doesn’t always help; thinking can prevent me from starting, so listening to music to distract myself from thinking allows me to work, but only on physical tasks, not cognitive labor. Another reason I can’t start is because I am tired: my brain exhausts itself processing; medication helps to an extent but eventually I just need to sleep; I sleep frequently, at any hour, to manage cognitive fatigue. This works for me but makes it difficult to participate as a member of society since I don’t keep normal hours. Also, I am tired of being tired.
- Aborted action—so I’ve managed to start, and somebody, or something, perhaps my own thoughts, interrupts me. Curses! Now I must start all over again.
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Tuesday 25 October Schedule Appt
Tyler calls me saying Dr. W has completed his intake paperwork.
“When is the soonest appointment?” I immediately ask.
“Tomorrow, early in the morning.”
I’m relieved, grateful, I feel Tyler has saved me. What was previously a sentence of going without medication for 48 days has been merely 22 days.
But I feel an abyssal dread crawling inside my ribcage: if not for Tyler, I would still be waiting. One kind individual can help another, but this doesn’t reform the broken system. Something is wrong with the state of medicine in America, and I am powerless to change it. Tyler is powerless to change it. Drs. S and W are powerless to change it. What do we do? What can we do?
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Wednesday 26 October Appointment
Dr. W asks, “So what’s been going on?” and I describe what it’s been like without my medication.
He responds, “Well it sounds like we better get you your medication then! We’ll just have you take a drug test and I’ll send the prescription to your pharmacy.”
The nurse hands me a cup with orange screw top lid, and I go to the bathroom to pee into it, screw the top back on, wash my hands, give the sample to the nurse.
As she’s checking my records before I leave, she says, “Oh dear, looks like Dr. W has printed your prescription instead of sending it to the pharmacy. He hasn’t quite gotten the hang of our system yet. I’ll sort it out.”
It’s only later I realize neither he nor I mentioned my previous drug test was positive for opioids. What was the point of all my worry? And why, then, do I take a drug test every six months if the results don’t matter? I don’t know if Dr. W hadn’t noticed what was in my records, or if he decided it didn’t need addressing because it was in the normal range for having eaten poppy seeds, or that I wasn’t showing any other signs of opiate or drug use, or thought it was enough that I took another drug test, or didn’t mention it for some other reason. What is the point of this?
My prescription isn’t filled until 4:45 p.m.
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Wednesday 26 October Emotional Dysregulation
At 4:45 I’m in class. We’re talking about The Curious Incident of the Dog in the Night-time, a book with an autistic protagonist, Christopher, although he does not call himself autistic but “someone who has behavioral problems.” The author, Mark Haddon, regrets describing Christopher with Asperger’s in the book’s first synopsis, wished for readers to perceive Christopher as a character rather than a representative of a diagnostic experience. (Asperger’s was removed from the DSM-5 in 2013 because there is no meaningful difference between it and autism, but the book was published in 2003.)
(I feel reasonably qualified talking about autism because once in my neurodivergent journey I asked, “Am I autistic?” but concluded it’s not a useful question. Medically speaking, diagnoses only enable access to medication or treatment, otherwise may cause harm if attached to permanent records. Socially speaking, diagnoses can function to form identity or community, and advocate for specific disabilities, but the identity “neurodivergent” could suffice for me. But I found autism resources helpful for managing my experience of neurodivergence (likely because most ADHD resources are aimed at parents of ADHD children). Later, I learned of overlap between ADHD and autistic experiences; but the cognitive processes are different. I am probably not autistic.)
(I’m embarrassed of the time I thought I was autistic—not because I would be ashamed to be autistic, but because of my failure to understand my cognitive functioning. And I’m embarrassed to write the following, because it both shows a community I value in a not-so-flattering light, and some of the least socially acceptable neurodivergent behavior.)
We’re discussing the book’s narrative design and lines of suspense. At the end, we don’t know if Christopher can go to university, but are we satisfied that he thinks he will? I point out this premise is flawed because his (fictional) life has value regardless of his ability to attend university. (Do I only have value because I graduated college? And now am in graduate school? What if I had flunked out of college and lived with my parents, relied on them to support me? (Would I have deserved it? I was, still am, a terrible student, despite desperately wanting to be good. I can’t keep up with what’s required.) I have friends in this situation, yet I still value them.) Also, that he lacks compassion for other special needs kids at his school. (Does he also lack compassion for himself?) I posit disabled people matter regardless of whether we can contribute to society.
Then, having shot the first arrow of criticism, classmates descend, vultures upon a corpse. I didn’t know yet, but our nuanced conversation was already dead. Should Mark Haddon have published a book with an autistic character despite not being autistic? (I hate that question. He did, whether we like it or not. A better question would be ‘What does he owe the autistic community?’) A peer argues the autistic character’s point of view is a gimmick. Rage hovers over me, blocks my vision. I don’t remember this conversation clearly as I usually do, anger clouds my senses, a thick fog. I know I say something like, “It’s not that he made the choice to write from an autistic character’s perspective, it’s that every other author makes the choice not to write from an autistic character’s perspective,” because later, saying this to a friend she’ll laugh, “Yes, you said in class.”
It matters that I read this book when I was 14; gives me perspective for what I thought about neurodivergence then. I feel like my peers are saying this book shouldn’t exist, although that’s probably not what they’re saying. I’m not giving the book a pass either, I want to understand what effect an allistic, or non-autistic (that 1. I’m the only one here who knows this language and 2. I feel I’m not being listened to is 3. some horrible dramatic irony) author writing an autistic character has on the portrayal of autism. But that’s not the conversation we’re having.
Someone says, “It’s like if I as a white person tried to write from the perspective of a person of color.” And I say, no, yell, “It’s not the same!” though that’s not what I mean, but it doesn’t matter what I mean because what I should have said is, “You’re derailing the conversation with strawman arguments!” or, “Can we talk about neurodivergence! This is important to me; I think about this every day. Not only that it is my life, but I love what I am; will you please let me talk about it?”
My yelling interrupts my friend, who asks, “Do you need to speak?” and I say “Noooo,” even though I need to speak, partly because I know I am behaving badly, but mostly I’m unable to articulate thoughts. “I’m gonna go under the table,” sliding out of my chair onto the floor. Under furniture is dark and enclosed and feels safe. Later I realize I’m speaking in an embodied way when I can’t communicate verbally. If someone argues Christopher’s behavior is unrealistic (was that an argument? can’t remember) I am doing something similar: see? this is how neurodivergent people behave.
A couple of classmates have calmer opinions, but one rants he’s sick of these books with “backwards portrayals of neurodivergence like Curious Incident and Girl, Interrupted,” and I tut loudly because if those are backwards portrayals then I better turn in my pen and laptop to the writing police because I write exactly like this but I’m sarcastic even to myself because I could no more stop writing than stop breathing this is how I understand myself and maybe he hates reading about neurodivergent people maybe he hates neurodivergent people—
“I think we’ll end class here,” the professor interrupts. “I can’t even see Echo anymore.”
As rain clears a horizon’s haze, my anger fades; I begin crying. Why am I crying now but not when angry? Years ago, when my mom, who cares about me so much, saw me under the table, she asked, “Why are you under the table?” in a somewhat judgmental manner. But this professor has seen me under the table in a way I am not accustomed to. I know how to be angry, frustrated, determined, annoyed, anxious, overwhelmed, tired, despairing. I even know how to be happy, playful, curious, calm, confident. But I don’t know how to be understood. I don’t stop crying for a long time.
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Thursday 27 October Prescription
“I’m going to be so powerful,” I repeat as I walk to the pharmacy, which makes me laugh. I am aware that talking and laughing to myself makes me look unhinged, but I will not deny myself joy in the name of social appropriateness.
I am powerful for about a week; everything seems so easy! Until the contrast between the medicated and unmedicated versions of me wears off and life is difficult again. Intellectually, I know life with medication is less difficult, but I don’t feel it in my body anymore.
I learned something different each time I couldn’t access my medication. First, that time in spring when I didn’t call for a refill: I cannot go without my medication; I must call for a refill. Second, when I missed appointments in April and June: I cannot miss my appointments, or risk going without refills. Third, I was abandoned without a provider: I don’t know what conclusion I can make other than the medical industrial complex doesn’t give a shit about me and it will let me suffer. These are also examples of how treatment for ADHD is hostile towards those with ADHD; forces us to do what our disorder makes most difficult.
Perhaps the worst aspect of ADHD is constantly encountering the same cognitive barriers; life can feel futile, hopeless. My therapist says, yes, the way my brain works cannot change, but who I am, how I respond to barriers, what I know about these barriers can change. I am capable of learning. What seems like a circle, recursive encounters with the same problem, is actually a spiral, the same problem at a slightly different position in space. This means that I not only have to learn or remember how to respond to challenges but remember to remember I am learning, so I don’t lose hope. What other option would I have, wait for a cure for ADHD? Even if such a thing were possible, I wouldn’t want it. I like how my brain works; I just want life to stop being so hard all the time.
I can say that I’ve learned from these experiences but this changes little. You may wonder how vowing things will be different can do anything when I have this gap between knowing and doing. I used to struggle with feeding myself more than I do now; I had to endure years of hunger—feeling lightheaded, dizzy, depressed, hopeless, fatigued, tired—and teach myself to tell myself that I need to eat, not eating is worse. I learned coping mechanisms: to forget ideals of “eating healthy” because I wouldn’t eat if I held myself to standards; I learned to eat the same thing for breakfast every day so I wouldn’t have to decide (cereal with a banana; if I’m out of cereal, toast with peanut butter; if I’m out of cereal and bread, I have flour and can make pancakes, but I need groceries now). Eating changed from what seems like too much effort to bother to something that matters. I’ve struggled enough getting medication that I now regard any action to get it as essential. (Even as, intellectually, I think the whole system is bullshit.) Months from now, when the Adderall production shortage finally comes for me, I will immediately call to ask my doctor to prescribe 20mg pills (which my pharmacy has in stock) that I can cut in half instead of 10mg pills (which the pharmacy does not) twice a day. What this doesn’t change is anything else that society deems essential that does not feel urgent or meaningful to me. What is the next not eating or not having medication I will have to endure to learn a lesson?
Every other person with ADHD struggles with the same process, undergoes suffering to conform ourselves to society. A student emails me: she’s unable to write her essays because she cannot get her medication because of the national Adderall shortage. I reply telling her to call her pharmacy, call other pharmacies, call her doctor to prescribe her medication wherever it’s available, at whatever dosage it’s available. She’s only 18, so young, doesn’t know anything about solving the problem; she’s just been going without, she shouldn’t have to do this. Do each of us have to learn from experience, from personal suffering?
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Echo Jardini is currently a Creative Writing MFA student at University of New Mexico. Their work is hybrid, integrating poetry, nonfiction, and various visual arts. They have been published in Redlands Review and Mentone Special. Echo is enthusiastic about native plants of the Sonoran Desert, cozy video games, and pasta. They live in Albuquerque with their sister and three cats.
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nat raum is a disabled artist, writer, and genderless disaster from Baltimore, MD. They’re a current MFA candidate at the University of Baltimore and also hold a BFA in photography and book arts. nat is also the editor-in-chief of fifth wheel press and managing editor of Welter Journal. They are the author of preparatory school for the end of the world, you stupid slut, and specter dust, among others. Past publishers of their writing include Delicate Friend, perhappened, Corporeal Lit, and trampset.
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