Healthy Mind Farms: An America 2.0 Tale

Dig and plant.  Dig and plant.  Dig and plant.  He focused so hard on digging and planting.  He had to.  He wasn’t allowed to think about the dirt working itself into the crevasses of his fingerprints and fingernails until it was so ingrained that no amount of washing would ever make them feel clean, not even after his skin was cracking and bleeding from so much scrubbing.  If he thought about it for even just a moment… DAMNIT!  Now it was all he could feel, and he had to get it off!  

But he couldn’t.  Couldn’t.  Couldn’t.  He had to dig and plant.  Dig and plant.  Dig and plant.  But he wasn’t because of the feel of the dirt.  The plants were untended at his feet.  Instead, he was vigorously trying to wipe the dirt off his hands and onto his “Healthy Mind Farm Approved” overalls.  An Overseer would notice soon.  They always did.  He couldn’t stop though.  He HAD to get the dirt off.  He could FEEL IT everywhere!

In that moment, for a brief flash, he remembered the before times and how much easier it was on his meds.  He had never been on a lot because he had a lot of supports and didn’t need a lot of medical management, but he missed them so much right now. It had just been Prozac daily and a small dose of Xanax for the full-blown panic attacks, like the one he was having now, that’s it.  Nothing hardcore.  Part of his mind was quite coherent and knew this would end badly for him, but there was nothing that whispered voice of reason could do to stop the sheer horror of the feel of the dirt.  He didn’t know why the dirt set him off so badly today.  He’d managed to keep from drawing the Overseers attention for weeks now.  The inside of his cheeks bore wounds in various stages of healing, dug out by his teeth as he forced himself over and over to pretend that nothing was wrong in order to avoid their attention.  

During intake, they had given him a piece of paper with his diagnoses on it in large print:  Autistic, Anxiety, possible OCD.  Then, during introductions, that piece of paper was torn from his hands and ripped to shreds in front of him.  That Overseer, clearly a good Christian citizen with blond hair, blue eyes, and a chiselled jawline, barked at him that he was none of those things, that he did not need meds or supports of any kind.  The Overseers made it clear he’d better not forget that because he wasn’t going to be leaving the Farm or having any contact with anyone from the outside until he recovered from the woke mind virus he was infected with.  

That was after they had stripped him of everything that was his, including his name (he was now Patient # 25937), forced him into the brand new, stiff, scratchy overalls that made his skin recoil, and shaved his head (supposedly to prevent lice).  He’d been off his meds for about three days at that point because as soon as someone was sent for placement on one of the Healthy Mind Farms all psychoactive meds were stopped, cold turkey.  All of that had, of course, caused him to meltdown the worst he had in decades.  At the Farm though, they weren’t allowed to call them meltdowns, here they were tantrums or disruptive emotional outbursts and were viewed as intentional misbehavior.  It had taken weeks for the bruises from the “correction” that “emotional outburst” had earned him to fade.  However, the Overseers found any chance they could to layer on more bruising consequences for any and every possible infraction, so he hadn’t been without bruises since before his arrival.  The Overseers say all of this was to get the patients “detoxed” from the “poison” of the medications that treat “psychiatric conditions” because those conditions don’t actually exist.  All mental illnesses and developmental delays are, in reality, just moral failings.  That was the whole point of the Healthy Mind Farms.  

On the Farms people with moral failings were supposed to have time to reconsider their choices, get good, healthy exercise out in the sun and fresh air, and renew their connection to God.  It was supposed to show the patients the error of their ways and teach them to be good, upstanding citizens.  He supposed it was a good goal, but in the before times, the meds had worked, and here he was, after weeks at the Farm, scrubbing his hands on his pants hard enough to rip skin while convulsively crying over every single sensation he was experiencing.  The funny thing was, since he had been here, he couldn’t remember anyone being sent home because they “got better,” not even the people who he had never seen show symptoms, not even the exemplar workers who were the pets of the Overseers.  The only people he knew who had left were the ones the Overseers “corrected” too strongly for the capabilities of the on-site infirmary.  Those patients had left in what looked like ambulances.  They never came back.  

The blood from his hands was starting to smear over his overalls, and still the dirt wouldn’t come off.  In between wailing sobs that he didn’t remember starting, he started coughing and gagging because he couldn't get enough air.  He was vaguely aware of the hardworking patients near him trying desperately to shush him.  He hoped they would stay away.  He didn’t want anyone else getting in trouble on his behalf, although most probably just wanted him to shut up so the Overseers wouldn’t pay them too much attention.  

On cue, enter stage right, the Overseers, two of them, always in a pair.  The stable part of his mind giggled; he couldn’t be serious even now.  Through his cross-wired mind, he recognised one of them and realised the worst possible future was playing out.  It was HIM.  The Overseers had no names, just Overseer or Sir, but this one was known to all the patients.  The gleeful gleam in the Overseer’s malevolent eyes as he realised which patient was acting up kicked in Patient # 25937’s flight response.  Sobbing and coughing, he ran while still scrubbing his hands on his overalls’ legs, trying to get rid of the feeling.  Even as he ran, he knew it was not just futile, but the worst possible thing he could be doing, but he couldn’t stop himself.

It was mere seconds before he was tackled to the ground.  In the before times, he had some martial arts training, but it’s hard to fight or even fall safely with a 250 pound wall of muscles hellbent for blood, pummeling you as you are panicking and haven’t had enough food or sleep for weeks.  He heard and felt his arm snap as he landed on it at the wrong angle under the man’s weight and screamed at the pain, struggling uselessly to get away, the dirt getting all over him now.  The Overseer roared, “I’ll give you something to scream about, you fucking useless pansy!” as his meaty fist snapped Patient # 25937’s head to one side, the patient’s jawbone and consciousness giving way with a crunch.

Invisible disabilites, or "Walk a mile in my body"

     I have a disability placard, two canes, and a walker.  I have a pain doctor I see every couple of months, at least six prescriptions involving pain (four of which are opioid-related), three supplements specifically dealing with pain, a medical marijuana card, a TENS unit, heat packs, multiple braces, CBD topicals and edibles, physical therapy treatments, and several otc medications I use as well.

    Yet, most people have no idea how much pain I am in on a daily basis.  I only use the disabled placard when I feel my level of disability on any particular day necessitates its use if I want to get everything done that day.  Even on the days I use the placard, it is unlikely you will see me using my cane or walker even though I may badly need them.  I look like an able-bodied person to most people.

    Why on earth won't I use my mobility aids if I need them?  It seems counter-productive. doesn't it?  However, when I use a cane or a walker, I am putting weight and stress on my wrists, elbows, shoulders, arms, and neck.  I had double cervical disc replacement surgery two years ago and I have carpal tunnel in both wrists.  While the surgery means I still have the use of my arms, it also means that certain types of stress and pressure to my arms or wrists cause me pain.  To use my mobility devices to prevent pain, I have to cause myself pain.

    My physical therapists have warned me about using my braces too often or for too long.  On one hand, they will lessen the muscle strength I need to keep my joints stable to counteract the damage my hypermobility syndrome causes.  On the other, they will reduce flexibility and motion in my hands, but they do help with pain and stability if used as prescribed.  

    The other thing the physical therapists have pounded into my head is NEVER limp. Ever.  Limping causes so many long term problems, so even when the pain is bad, my goal is to not limp because while it might help ease the pain now, I will absolutely pay for it later.  Even when my pain numbers are well above 5, I still try to do my physical therapy exercises every day through the pain because if I don't I won't be able to do anything very quickly.

    All of the pain medications come with side effects.  ALL of them have noticeable side effects that impact my daily life functions.  I have prescriptions to deal with the side effects of some of my pain meds.  Most of them impact my ability to drive safely which makes dosing medications dictated by my (and the children's) day's schedule more than by my pain levels.  

    What it comes down to is that on any given day at any given point you are seeing me at between a 2 and 7 on the pain scale.  I am never not in pain.  I am rarely not in pain that actively affects me even if I am on multiple medications for it.  The pain makes me tired.  I am also never not tired.

    The thing is, I am just one person whose story you haven't personally experienced, simply one person who, from a glance, seems able-bodied and healthy.  Any person you meet could be me.  Any person you meet could have dramatic, life-affecting situations they are dealing with while smiling at you and chatting about the weather.  Be kind.

Coming to terms with being disabled, but not legally so

Disability is defined as a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits, a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions and as an impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment. (from www.merriam-webster.com/dictionary/disability)

By both parts of that definition, I am disabled.  My conditions, all put together, significantly limit me on a daily basis and I have not been physically able to work a full-time job, or even a regularly scheduled part-time job, for years.  It's been a struggle as it is to educate my children, be my son's aide twice a week at school up until this year, and squeeze in as much side work as my body will allow.

This has been something that has been very hard for me to come to terms with.  I kept hoping things would get better and I would miraculously go back to the functionality I had for most of my life.  It is amazingly hard to accept that this body that I inhabit, that for years was very responsive and obedient to my wishes, that allowed me to work construction, do marathon arts and crafts sessions, and that birthed, fed and lugged around two children, now can't pick up a gallon of milk some days.

It was even harder to come to terms with when so many people kept saying things like, "Oh, it's just the aging process.  Everyone has aches and pains when they get older."  I'm turning forty-two this year.  The vast majority of forty-two-year-old women with my history and habits are not in constant pain every day, but the message of "Suck it up and deal," is a very powerful one in our culture if you are young (enough) and appear to be healthy.  

That's the other thing, I look healthy.  I'm not wheelchair bound.  I don't need a cane (most days) or slings/braces (also most days).  Generally, none of my issues show on the outside.  In fact, to try and improve symptoms, I lost a lot of weight.  Now I am more slender and still have all the health problems I did before.  People notice the weight loss, not the limp (in part because the physical therapists pounded it into my head to avoid limping if at all possible) or the careful way I have to get up and down from a seated position or the fact I often avoid carrying anything remotely heavy or how I freeze when faced with sudden change.  

The long road to finding actual diagnoses did not help the process.  It was one problem stacking on top of another, stacking on top of another over years.  It turns out in the end that many of them are intertwined symptoms rather than diagnoses on their own.  The whole process, from beginning to end, from the time I first started trying to solve some of the related health issues was at least five years.

When I finally admitted to myself that maybe, just maybe, I'm not going to get back to a point where I can work reliably, I looked into going on disability.  What I learned is that the system is rigged against people like me.  It sounds cynical, but unless you have worked enough in the past five years to have earned enough credits then you do not qualify for SSDI.  I obviously haven't because I have been disabled and trying to recover to a point where I wasn't and, on top of that, I was raising my kids, homeschooling, and acting as my son's aide on a volunteer basis, none of which counts for disability credits.  

I also don't qualify for SSI which is where I was pointed when the credits problem was explained.  To qualify for that, I would have to get divorced and get my name off one of the cars, close my business bank account, etc and so on because we make too much as a couple for me to qualify for that either.  The cut-off, by the way, appears to be $1500 a month for a couple at least in California and you can't really have any property of any value.  While that is just above the federal poverty level for a couple, we have two dependents which doesn't seem to be factored into the SSI information at all.  

Not to mention that finding ANY clear, concise information concerning requirements and income levels and all of that is a full-time job in and of itself and caused me massive anxiety attacks.  The Social Security Office wasn't helpful.  The local support agencies weren't helpful.  Even my health insurance company which has a kind of advocate for such things wasn't helpful.  It feels like the whole process is set up to make people give up.

(This was written the summer of 2018 and I forgot to publish it then.  Some things have changed and I hope to post about them soon, but I figured I should put this up in the meantime.)