Tag: disability

The Long Road to #StoptheShock

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For two decades, a Massachusetts school has been under fire for torturing disabled students with shock devices. Now, activist efforts to end the practice may soon pay off.

Originally published by The Progressive
BY MEG HARTLEY
FEBRUARY 1, 2023, 6:00 AM

In the mid-90s, around the age of eleven, I saw a television show on PBS about old asylums that would do horrifying things to people society deemed insane. It scared me, especially since it didn’t clarify what happened to those same people in modern times.

I asked my mother, who took some time before she answered. While waiting for her response, my mind raced with early memories I tried to suppress: frequent teasing, adults concerned about how I didn’t “act normal” and had atypicality in developmental milestones.

“Well, there’s definitely still improvements to make,” my mom finally said, “but those awful torture-like treatments don’t happen to people with mental health issues anymore.”

While she was right about most things, she was sadly wrong about this.

To this day, there are Americans being subjected to a treatment that the United Nations Special Rapporteur on Torture has officially condemned as torture at the Judge Rotenberg Center (JRC), a residential school for students with disabilities in Canton, Massachusetts.

Patients at the facility with “developmental disabilities, emotional disorders, and autistic-like behaviors” are being shocked using an extreme form of aversive therapy. This procedure sends strong electric shocks throughout an individual’s body with a device called a graduated electronic decelerator (GED). It is often used when patients exhibit unwanted behavior — which, according to those who have undergone the treatment — pretty much means not acting “normal,” a standard that the center defines loosely.

In fact, the movement against JRC, known online as #StopTheShock, gained traction in 2012, when partial footage of a Black autistic teenager named Andre McCollins being shocked thirty-one times in seven hours was made public. McCollins was allegedly forced to undergo the treatment for refusing to take off his jacket, while all but two of the shocks were for “tensing up” or “screaming.” JRC claims to only use GEDs in extreme cases, but, again, that deeply conflicts with the experiences reported by many people who have had to stay there.

Additionally, the only defense that JRC offers is claiming the GED is necessary to prevent self-injurious behavior (SIB) as well as aggression (AG) and saying that they have the most difficult cases in that regard. But the FDA strongly disagrees. The FDA’s 2020 inspection reported, “25,000 is a reliable, conservative estimate for the number of the more extreme cases of SIB and AB in the United States. We have no evidence establishing that, of those, JRC receives the most extreme or refractory cases,” additionally stating, “JRC has not established that its residents on whom ESDs [electric stimulation devices] are used are refractory to other treatments, and the evidence shows that state-of-the-art alternatives have generally been successful even for the most difficult cases.” JRC doesn’t need to be shocking these already-struggling people, it’s just not necessary.

You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”

To give you an idea of just how strong the shocks are, JRC’s strongest device, the GED-4 — a type of electric stimulation device that is not approved by the Food and Drug Administration — shocks patients at 90 mA, which is nine times higher than a cattle prod and around twenty-two times stronger than an electric fence.

The fight to end the torture happening at Judge Rotenberg has been going on for nearly two decades, but JRC’s influence and funding has been an obstacle. In 2020, they received $84,108,326 in grants and other government funding. That same year, the FDA attempted to ban ESDs at large, stating the agency “has determined that these devices present an unreasonable and substantial risk of illness or injury,” which could include “depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness.”

But JRC reacted by suing the FDA, and in July of 2021 the ban was overturned by the U.S. Court of Appeals for the D.C. Circuit, stating, “a use-specific” ban “interferes with a practitioner’s authority by restricting the available range of devices through regulatory action.”

But, due to the efforts of community activists, most vocally the Autistic Self Advocacy Network (ASAN), that may soon change — the recently passed omnibus bill includes a provision that gives the FDA the right to ban contingent electric shocks used for behavior modification. Now the agency just needs to know that the public is against this torture and in support of the #StopTheShock movement.

We’d like to think that we’ve moved on from the days of treating people who can’t squeeze into a homogenized idea of “normal” as less than human, but in far too many cases, we really haven’t. As a neurodivergent person who’s had public autistic meltdowns — something that can get you put in places like JRC — this is a terrifying example. So, please, for the sake of the millions of neurodivergent people in this country, and especially those at JRC right now, please bust out that phone and start putting pressure on the FDA.

You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”

Again, big thanks to The Progressive for funding and originally publishing!

Jennifer Msumba/Wikimedia — A drawing by a former resident of the Judge Rotenberg Educational Center depicting the punishment of GED shocks while restrained to a four-point board. According to the artist, residents sometimes received multiple GED shocks while restrained to a four-point board as punishments for standard infractions.

Haunted: Invisible Illness

Published on by megglesworth2 Comments

Originally written on April 29, 2017, a year and a few months after I nearly died from a congenital vitamin B12 deficiency (maintained with help of the aptly-dubbed MTHFR mutation), which sent aggravating fibromyalgia symptoms to completely horrifying and utterly debilitating. I hope it helps someone out there in the worst of it feel hopeful and less alone:

Due to a problem with my nervous system, I am disabled and chronically ill. My symptoms often become incorporated into my dreams, sometimes it’s almost funny: a man getting an electric foot massage on my back when the machine shorts out. (Okay, weird/scary, not that funny.) More often, it’s just me trying to keep up with the dream and sorely falling behind.

I just woke up from a miserable one. A repeater. Familiar people are telling me that I’m faking it. That I’m pretending to be weak to get attention. That I’m just irresponsible and lazy and need to try harder. Or worse, they roll their eyes and give one another a knowing smile like, “Won’t this be fun to dish about later?”

It’s bad enough constantly having to explain what’s wrong with me and why I can’t do x, y, and/or z just like everyone else — but then to have convince them that you aren’t telling falsities, and to do so when your brain can’t even recall basic information reliably — I can’t explain how awful it is. How demoralizing. How it just makes a person want to give up.

But then to also do it every night in my dreams? Shiiiiiiit, this has to stop.

I clearly still have issues with people from my not-so-distant past, that’s where I can do work. Forgiveness. Self-love. Continuing to hang with empathetic folks.

But the real problem lies with society. The people in my dream aren’t “bad” guys. They are very “normal” people. We, as a society, still don’t have a strong understanding of invisible illness. (Even though it’s pretty darn common.) And we definitely aren’t aware of how to behave with empathy in regard to it.

Just because you can’t see a person’s pain doesn’t make it less real. To us who deal with invisible illness, it’s all the more real: because we’re so often received with disbelief and even bitterness in place of compassion. Can you imagine? No, like, really try to imagine.

Take a couple of minutes: Imagine waking up in agony, trying to shake off dreams like I just explained. Knowing that you have maybe 3–4 usable hours, that this agony is as good as you’ll feel all day, that it’s just going to get worse. Pushing through everything that you can get done despite your symptoms — which is never even close to the amount that needs to be done. As far as keeping up with life goes, you’re fucking drowning.

And then the pain levels rise so high that you can’t think straight. And then the fatigue levels get so high that just taking a bath is daunting. The television, and all sounds, feel abrasive; so all you can do is lie there until you feel tired enough to pass out despite the pain. But once you actually get to bed that’s rarely the case, as your memory foam feels like pavement — squishing your tender body and making it scream all the louder, a cacophony of miserable symptoms that you just have to lie there and bear. For hours. Every. Single. Night.

Imagine getting through a day and night like that, and then having someone say to you, “Man, I’m jealous — I wish I could stay at home all day!”

Do you see how demoralizing that could be to someone? It’s a private fucking hell, it’s truly awful. Not that my whole life is awful, but more days than not are indeed this bad, and all too often that’s people’s attitude. It really wipes my resting niceface right off, and totally screws up my “fake it ’till you make it” coping strategy.

But how can you really know if someone’s sick if they don’t look it?

WITH THEIR WORDS, dummy. YOU LISTEN TO THEIR WORDS.

Trust the people in your life who tell you they’re not feeling well. Your reaction to someone else’s admittance of that, which often doesn’t happen until a breaking point — can have a HUGE impact on their life. Be the person that helps them find the right doctor. That googles their symptoms in-depth to help find answers. Or simply be the person that listens to what’s going on with them, instead of hurrying away uncomfortably or changing the subject.

We’re doing it all wrong when it comes to our attitudes about chronic illness, and it’s at the detriment of those of us already in a very precarious place. This is off-topic for the website, I know, but it’s really important to me — so I suppose my sharing here is fuckless.

Thanks for listening.

How cannabis helps ‘spoonies’ soothe the symptoms of chronic illness

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By Meg Hartley
Published on May 17, 2019 • Last updated July 28, 2020

Medical cannabis is known for its ability to quell seizures, dull pain, and squash anxiety. It can also aid people with less well-known—but not uncommon—conditions, ones that often come with a life-long sentence. We call ourselves “spoonies.” In my case, fibromyalgia was the main force behind my conversion, but sadly there are a lot of ways to join the ranks.

The term was coined at a diner, when a lupus fighter named Christine Miserandino tried to explain the challenges of living life with the disease to a friend. Her friend knew the facts, but wanted to know what it felt like as an ongoing experience—as a lifestyle. Christine was a bit stunned: trying to sum up the limitations that affect every single aspect of your life is an overwhelming task.

Cannabis is a very common medical aid and ally to spoonies, offering soothing powers to all kinds of symptoms through the power of the body-wide endocannabinoid system.

She then grabbed a bunch of spoons from surrounding tables. She handed her friend the utensil bouquet, telling her that life with chronic illness is like only having so many spoons to get through the day—far fewer than the average person. If she borrows from tomorrow, she might be able to swing what she needs to get done today; but tomorrow has just as few spoons, so she’ll run a high risk of running out. And running out of spoons/overdoing it means big-time symptom flares and even less spoons. Maybe for weeks.

Christine asked her friend to go through her day, removing spoons appropriately as each activity demanded: getting up, showering, getting dressed, eating, etc. Half of her friend’s spoons were gone before she even left the house. Christine told her she had to decide what to miss out on in order to conserve spoons—run errands or make dinner? Wash the dishes or your hair? See a friend or catch up on work?

Her friend became sullen and asked how she possibly dealt with those limitations every day, forever.

A best friend to so many kinds of spoonies

Christine answered her friend’s serious question with a serious answer, and told her that spending her precious spoons chilling together was always a wise expenditure. Personally, I would have added: “And there’s no effing way I could do it without cannabis.” Though it can’t give me desperately needed spoons, cannabis makes getting through a regular spoon-starved day a whole lot more palatable—and a full-blown flare less horrific.

Cannabis is a very common medical aid and ally to spoonies, offering soothing powers to all kinds of symptoms through the power of the body-wide endocannabinoid system. We’ll touch on five conditions that can turn someone into a spoonie, as well as how cannabis is said to help treat symptoms.

Lupus

In the disease fought by Christine, the body’s immune system becomes hyperactive and attacks normal, healthy tissues, and organs. It affects many different systems, resulting in many different symptoms. These may include extreme fatigue, headaches, painful and swollen joints, fever, anemia, confusion and memory loss, swelling, pain in the chest with deep breathing, hair loss, light sensitivity, abnormal blood clotting, ulcers, and more—including very serious issues like organ failure.

Science is extremely behind the ball when it comes to studying how cannabis can assist chronic illnesses, and the lupus community has not been served in this effort. However, there has been promising results in regard to cannabis aiding other diseases that affect the immune system and inflammatory response. Lupus is nicknamed “The Great Imitator” due to sharing symptoms with other diseases, and science has proven that cannabis aids in many of these shared symptoms. The next disease is one such example.

Fibromyalgia

This is the bugger getting me down. Many kinds of physical pain are involved with this disease, whose cause is unknown. I could write a whole essay on the different kinds of pain, but instead I’ll share that when I broke (nay, shattered/comminuted fracture) my foot a while back I walked on it for ten days because it hurt less than the rest of my body, so I figured it was fine. Oops. And then there’s the mental confusion of “fibro fog,” fatigue, insomnia, and other fun stuff like depression and IBS symptoms.

My dear friend cannabis helps ease the pain, turning cutting shards of glass in my body into warm melty goo. It aids in lifting my spirit, which helps me push through the exhaustion, then gets me to eat through nausea. When I can do no more—when I become spoon-less—cannabis helps me emotionally handle the extreme amount of rest dictated by this advanced stage of the disease. And science backs me up here, with one fibromyalgia study showing so much improvement using cannabis that half of the participants quit their other medications completely.

Myalgic Encephalomyelitis (ME)

Referred to by some as chronic fatigue syndrome, ME causes severe exhaustion, a debilitating symptom that’s often minimized by culture and, deplorably, even by the medical community. The cause is unknown. Rest and sleep don’t improve overwhelming ME fatigue, and it worsens with physical and mental activity. Sufferers also battle headaches, poor memory, difficulty concentrating, dizziness, nausea, palpitations, insomnia, and sore throat or glands.

Unfortunately, science has not studied ME much in general, and not at all in relation to cannabis, but it has been recorded as anecdotally helpful by scientists. Another fibromyalgia study also showed improvement in many overlapping symptoms. Because of the sedative effects of certain cannabis strains, it’s said that using an energizing strain during the day can be crucial factor in improving symptoms of ME. Modest dosing can also prevent feelings of sluggishness.

Crohn’s disease and Colitis

Ulcerative colitis and Crohn’s disease are the two primary forms of inflammatory bowel disease (IBD). They are both characterized by chronic inflammation of the digestive tract, though colitis is limited to the colon and Crohn’s can occur throughout the digestive system. Both diseases can result in abdominal pain, severe diarrhea, rectal bleeding, fever, fatigue, nausea and vomiting, weight loss, anorexia, and malnutrition.

Cannabis can lend a hand in living life with colitis or Crohn’s. It’s often a qualifier in medical cannabis states, with patients using it to fight the full range of symptoms. Cannabis is an effective IBD aid largely because of its ability to reduce inflammation. A small-but-promising study on Crohn’s disease found that participants needed less surgery and reduced bowel movements while using cannabis, as well as drastically reduced need for other medicines.

Endometriosis

A woman’s uterus has endometrial tissue that builds up throughout her hormone cycle, then breaks down and sheds—a never-particularly-fun process called menstruation. In endometriosis, this tissue grows outside of the womb, spreading itself on the fallopian tubes, ovaries, and other organs. When it’s time for the shedding of blood and other cells, they become painfully trapped in the body.

This problem can result in severe menstrual cramps, chronic lower-back, abdominal, and pelvic pain, painful intercourse, painful urination or bowel movements, IBS symptoms, and infertility. Traditional treatments (including risky surgeries) only try to keep the endometriosis from advancing, but cannabis has actually been shown to stop cell growth in mice as well as helping symptoms, especially pain.

We’re more common than culture regards

There’s many more ways to become a spoonie: Lyme disease, multiple sclerosis, Ehlers Danlos syndrome, or Hashimoto’s—all four (and potentially many more) may be aided by cannabis via the body’s widespread endocannabinoid system. It’s frustrating that science doesn’t understand these illnesses quite yet, regardless of the stunning amount of promise it shows in improving the lives of spoonies.

When you total the numbers of Americans estimated to be suffering from the eight diseases mentioned in this article, and there’s many more, you get 91.5 million—that’s about 27% of Americans. Though there is comorbidity to be factored in (people who have more than one of these diseases), there’s also millions still searching for a diagnosis, as well as many conditions that weren’t mentioned.

We’re talking about a lot of people suffering from conditions that are barely regarded by society here. A whole lot. And they are generally invisible illnesses, which adds another dimension to feeling ignored. It’s like we’re drowning a world of problems that only we can see. Hug your spoonies (and maybe smoke ‘em out), because you probably know at least a couple—whether you’re aware of it or not.

I Am A “Spoonie.” Here’s What I Wish More People Knew About Chronic Illness

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MindBodyGreen, November 28, 2016
By Meg Hartley, mbg Contributor

I Am A "Spoonie." Here's What I Wish More People Knew About Chronic Illness
Photo by Stocksy

Are you familiar with the Spoon Theory, or the term “spoonie”? If it sounds a little odd, hear me out.

It began when a young woman named Christine Miserandino explained to a friend what it was like to have lupus. They were chillin’ at a diner when the friend asked what it was like. Christine gathered all of the spoons from their table and a few more from others, then explained that when you have a chronic illness you only get so many “spoons” per day.

Every tiny thing uses up spoons: doing the dishes, showering, having feelings, getting dressed, ever-y-thing. When you use up all of your spoons for the day, you can borrow from tomorrow—but you will PAY, making tomorrow otherwise worthless, and probably the next day, too. (And if you incite a flare, weeks!)

Another factor for many spoonies is being homebound. I was a public-transportation-lovin’ Portlander, walking up my half-mile hill like it was no thang just a year and a half ago—but now that hill might as well be Everest. Other spoonies are homebound due to their conditions alone, lucky to manage even checking the mail.

Being a homebound spoonie isn’t fun. It’s actually super difficult. It also must be hard for our friends and acquaintances to know what it’s like, and hard for them to know how to help or what to do. Here are a few things that I want everyone to know about this sitch:

1. We rest up to see you.

Before I leave the house to the doctor, to see a friend, or anything—I have to lie around for two days to gather my spoons, if you will. I learned this the hard way: by being in public when level “too much to physically function” creeps up. Now I rest up. This is something to be mindful of when making plans with a spoonie.

2. We recover from seeing you.

For two days after I run errands or socialize, I have to recover. I’m currently at a health stage where those things take up all of my spoons, and I have to pay the price for it. (To my homies—it’s totally worth it!)

On the few days a month I’m actually able to leave the house, it’s not uncommon to hear, “But you look and seem great! Are you sure you’re so sick?” It seems innocuous, but most of us spoonies have had to try to convince people that we are physically unwell for years, and a comment like that can really stir up the feels.

3. Getting my diagnosis took years, and I was accused of faking it many times.

It’s hard to express just how difficult that was. When your body isn’t working and no one can tell you why, let alone how to fix it, it’s the most powerless feeling on earth, but then to have to try to prove that you’re suffering—it was profoundly deflating.

I’ve also found that when I act like I’m feeling better than I am I can actually distract myself from the symptoms for a bit and get some shit done. If I have to get through a doctor’s appointment and grocery shopping when it feels impossible, staring at the good stuff and forcing myself to engage in a little chitchat is really helpful. It’s kind of a “fake it till you make it” approach, and I’ve gathered that it’s a common one. But we’re putting on a face to cope—it’s harder than we make it look.

4. It’s a big financial stress.

Figuring out how to make money when you can’t leave the house, or even function much of the time, is incredibly difficult. It’s taken me 11 months, and I still don’t have a consistent income put together. (Thinking about how chronically ill parents possibly deal with this, man, I can’t even…)

It’s been a whole lot of hustling for gigs that can be done at any hour from anyplace (whenever my body allows, and from home), and those are really coveted freakin’ gigs because who doesn’t want that kind of vocational freedom? If you know someone in a situation like this, money is likely to be an issue in their lives, especially if they’re just learning how to cope and in a world of medical obligations.

My friends, family, and the badass community that I grew up in gathered together this winter and raised enough money to get me through the scariest part of my life. I can’t even begin to express how much gratitude I have to everyone who’s helped me this year, I look forward to finding actions, because words just won’t suffice.

5. If we ask for help—we’re desperate.

Obviously everyone’s different, and some people have no trouble asking for help and/or have a badass support network that doesn’t require them to. Others struggle with feeling worthlessly small when they have to ask for help, and they only have a few close friends in their new-ish city…. (Hey yo.)

I’ve gotten the impression that sometimes people feel like they want to do a good thing and so they offer to help or say yes when asked, but they don’t fully consider whether they really want or are able to, and so wind up bailing.

It’s a really lovely intention, but the thing is when people offer to help and then bail at the last minute—we’re screwed. Like as in no food, or no medicine, actual, in really real ways. So please don’t offer or say yes to someone in this situation unless you can definitely follow through.

6. Offering help is amazeballs.

When people let me forgo the asking for help part by asking what they can do to help—man oh man, is that just spectacular. I could use help pretty much all of the time. I usually just buckle down and figure out a way to do it on my own, which can get dicey. When someone steps in and they’re like, chill, I got this, it’s just the best. My neighbor sometimes calls from the grocery store to see if I need anything while he’s there, and it just makes my day. Small things go a long way in this sitch!

7. We get really enthused about small things.

When I finally get to leave the house I’m like a child, staring at my beloved city with new eyes, pointing out all of the awesome everywhere. I’ve gathered from medical ride providers that I appear a bit silly when I do this, but who cares? The world outside my apartment is currently precious and fleeting, and when I get to play in it—I PLAY in it.

8. But sometimes we need to cry our eyeballs out.

I have a family friend who’s become wonderfully close over the last six months. She’s someone who knows how to hold space, to listen with empathy and without judgment. I know my words won’t escape from her mouth to others’ ears. Being able to call her and let those feels out has truly been a lifesaver.

Samesies for others who’ve seen me at my absolute worst, my most desperate, and yet still come ’round all full of acceptance and kind words. They make me feel safe. Like I’ll make it. It’s so precious. When human contact is rare, the desire to try to make it a wholly positive experience can be overwhelming, so providing a spoonie with a safe space to release the bad feels is an ENORMOUS help.

9. A text message is not a phone call.

This winter I went over two months without hearing the voice of a beloved human. I’d call people, but they’d text back. I used to be the same way—I totally get it—so I didn’t want to pester anyone, but it was desperately lonely. (Yet my Facebook was blowing up! It’s a strange world we’ve made ourselves here.)

10. But a text message is better than nothing.

So many people from all over have been checking in on me throughout this journey, and it’s meant the world. I remember how crazy life is out there, and it’s heartwarming to know I’m thought of and that they took the time to express it.

11. Because sometimes it feels like we could just disappear.

When you’re alone so often, and especially during stretches like in No. 6, it feels like you’ve already vanished—and the world’s just fine without you. It can feel like you don’t matter. I’ve learned to create some semblance of community, and that’s helped lots, but those feels still haven’t quite gone away.

So love on your spoonies, people. This is hard. It’s harder than we make it look, and we’ll probably never actually divulge just how hard it is. (Health issues are often embarrassing.) Before all of this, I remember sometimes whining about not having something I wanted, then rolling my eyes and sarcastically saying, “At least I have my health”—like it didn’t even count.

Never. Again.

How a vitamin deficiency nearly paralyzed me

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SheKnows, JULY 21, 2016 AT 8:00AM AM EDT
by MEG HARTLEY

How a vitamin deficiency nearly paralyzed me
Xesai/Getty Images

This fall, after a lifetime of odd health experiences, I became too sick to do literally anything. Lifting up a book to read or my phone to scroll was too painful for my arms. Sound frequently and intensely irritated me, making binge-watching out of the question. Every time I stood up, blackness would cloud my vision, and I’d be sure I was going to faint. Once I was up and the darkness lifted, I couldn’t walk right. My legs were too weak, and it felt like something was tugging hard on my nervous system, pulling it upward like I was a marionette.

I thought I was dying — and I kind of was. Without a diagnosis, I would have died. I had a total of 33 miserable-making symptoms.

It came on slow. It was tiny aspects of my experience — a cyst here, a rash there. Or other random things, like being clumsy and having to pee all the time. Sometimes it was bigger things, like a mental break or endometriosis symptoms. There were also the ever-increasing changes in my demeanor and level of energy and an electric pain that started as innocuous pins and needles.

I didn’t want to admit something was wrong. So for a while, it was easy to pretend I was fine, but it turns out I’ve been ill for a very, very long time. It’s hard to say exactly how long. I can’t go back in time to give a 10-year-old me with ulcer symptoms a blood test, but that period of pain went unexplained and was consistent with what’s made me so sick now: vitamin B-12 deficiency, of all things.

My symptoms have progressed to funicular myelosis, which is the combined degeneration of the spinal cord. It’s probable that without treatment I would have been paralyzed by now. MRI scans revealed that my brain looks much older than it should, with white foci sitting where they ought not. And six months into treatment, I still can’t walk more than a few minutes without dire punishment.

And because of a vitamin. A vitamin. It’s fucking nuts.

So why wasn’t I tested before the age of 33? Why didn’t they figure it out before it got so bad? I’ll leave out big pharma’s role and pin it two big things: misdiagnoses and misconceptions. Vitamin B-12 deficiency mimics many other diseases, and it can look like almost anything, making misdiagnoses rampant.

Doctors have also been taught to consider serious B-12 deficiency an old person’s disease. When people get older, their stomach often stops working right, and they can no longer absorb B-12 through foods, eventually creating a deficiency and an array of symptoms. Although that’s when it’s caught most often, it can happen at any age.

Another misconception is that because B-12 is only found in animal products, only vegans and vegetarians need to worry about it. Nope. In addition to stomach problems, which are created by many things such as surgery or autoimmune disorders, it’s possible to become deficient even if your intake is sufficient. It can also come from a very common genetic mutation called methylenetetrahydrofolate reductase, or MTHFR for short. (Apt, isn’t it?)

That MTHFR of a reason is mine. My prognosis is good; treatment is simply B-12. I’m getting better, oh-so-verrrry slowly but surely. Most of the random symptoms have vanished, which is wonderful. The biggie now is the electric pain; I feel like I’m being electrocuted most of the time. That and if I move too much (barely at all), I lose the ability to walk.

I’ve had a lot of time to reflect. It’s a strange thing to discover that you’ve been sick most of your life and you didn’t even know it. There are so many little symptoms that I thought were personality quirks, like excessive sighing (shortness of breath), getting confused or being lazy (weakness and low energy).

I look forward to a new shot at life. In my daydreams, I regain levels of health I once knew as a competitive dancer, and life is imbued with a level of vitality I haven’t known as an adult. Everything is easier, and I feel like a super-me, able to hike up mountains and actually consider it to be fun. I travel the world and explore ancient ruins without ever saying, “I’m tired.” Ah. Let’s hope.

And as for you, I recommend that if you have any, and I mean A-N-Y, unexplained ailments (including mental illness and infertility) you get your B-12 levels tested. Early B-12 deficiency can look like almost anything, as it affects the nervous system, which is part of everything. Also, find out if you’re a MTHFR, and take the appropriate precautions. It might seem like a pain in the ass, but just do it. Trust me.