On Being Chronically Ill, Black and Poor

Today isn’t a great day for me. Really, the whole week hasn’t been that good, and December was a terrible month too. Actually, scratch that, 2014 was a positively awful year for my health. It’s not looking too good so far for 2015 either, but I’m trying to be hopeful.

See, I’m a Chronically Ill Person (CIP). I’ve been a sensitive, sick person most of my life. I always got the virus or germ going around as a kid, god forbid it was a stomach bug or a respiratory infection. Seriously, have you ever had a cold and asthma? No? Let me tell you, it’s terrible. What is normally a three or four day adventure in illness becomes a two week adventure with the chance of a hospital visit when you add asthma in. Flu or bronchitis? Better bundle up until you can’t move to protect your chest from the cold weather, because even walking pneumonia (aka, pneumonia lite) can hospitalize you. Be prepared to be so high on albuterol, cough medicine and prednisone that you shake in your sleep and cough until you vomit (I’ve done both). That is, if you can sleep, because sometimes you’re too jittery to sleep.

And asthma is actually the one problem I have that is the most controlled and least troublesome. Mainly because I’m supremely used to it, and there are a lot of resources and knowledge at my fingertips. Except medication, that shit is expensive. I manage my asthma on the least expensive vitamins I can get (ionic minerals like magnesium, calcium, selenium and zinc are good for asthma), caffeine, and judicious use of “fuck walking up this hill right now.” Also, by least troublesome I mean that I am used to it and handling it, not that it isn’t severe and ridiculously reactionary at the most random times (seriously, what bothered me last week may not bother me this week, but I’ll have an overblown reaction to something I’m constantly exposed to out of nowhere). Fun shit right?

But that is not the least of it! My life would be much easier if all I had to deal with was asthma. No, I have to deal with lots of other chronic health ailments. The fun life of a CIP is that, very often we get avalanched by new shit. Oh, you got used to asthma and chronic insomnia? How about worse asthma! We’ll throw in depression and anxiety too, and interpersonal issues! Worse insomnia! Crippling exhaustion, joint pain, muscle pain, brain fog, dizziness, even worse depression and anxiety.

Some of my issues improved when I graduated high school. Asthma improved, and the horrid exhaustion, brain fog and dizziness hadn’t started yet, those actually started in 2010, along with palpitations (which are sporadic nowadays) on a regular basis. My health did not improve, it hovered for a while from then to 2012, when my mental health took a dive. My health improved some in 2013 when I partially moved out, and initially improved when I completely moved out in 2014, however it took another nose dive close to spring. I ended up hospitalized with “atypical, seizure-like symptoms.” I was hospitalized for five days, had two CAT scans, an MRI, an EEG and several blood tests. I was discharged with a diagnosis of psychopathic movement disorder (a nice way of saying, your brain made you sick, aka, you crazy). I still have muscle spasms and twitching, sometimes that disrupts my strength and ability to walk unaided. Did I mention the dizziness, brain fog, nausea, abdominal pain, and such? Feeling lightheaded, unbalanced (like I could fall over or collapse, but not dizzy), weakness (generalized and specific), muscle and joint pain, and what is probably nerve pain? Yes? Good. Let’s not forget, that despite cold weather, especially cold, dry air, being a serious asthma trigger, it is the only thing that provides even a modicum of consistent relief, especially if I was just overheated, which I get easily. And being overheated makes me feel infinitely worse and always has.

See, but I can hear people already. Go see a doctor. Get a new one. Go see a specialist. Go to therapy (cuz all depression and anxiety everywhere always responds to that). I’ve done all of that already. I’ve seen five doctors in the last four years (we’re only a week into 2015, so I’m still operating from 2014), which is actually a miniscule number compared to what most undiagnosed CIP’s go through. I’ve seen five therapists. The issue, is the matter of money.

I live in America, the land of Fucking People Over, especially poor people, like myself. This means that I have limited options for receiving low cost health care, if I can find it, because there isn’t universal healthcare and I have shitty insurance. Insurance companies hate me, because they hate all sick people. They like my boyfriend, because he’s rarely sick, and only went to the hospital over a particularly bad stomach virus, because I forced him to. I have the hospital I went to calling me three times a week to collect the 500$ I owe them because I don’t even have 20$ to get a new inhaler. So, I’m actually in physical danger of another hospitalization (because asthma can kill you! Fun shit right?) since I can’t afford a basic medication. Oh, and this was after my insurance initially denied to cover my hospital stay and denied covering the ambulance. That would have left me thousands of dollars in debt, for a five day stay that yielded absolutely no viable answers or treatments as to what the fuck is wrong with me. Did I mention the ambulance was eight thousand dollars? Yes, a rolling box that took me from one hospital (the one near my house), to the hospital I was admitted to an hour away, cost 8,000$. Our car doesn’t cost that much in a year, even with gas, maintenance and insurance thrown in, and it’s a new Volkswagen. I’m twenty-three, and they were going to leave me with as much debt as my school loans because I got sick.

I’m a student, I’m black, and nobody wants to hire me to work. I cannot afford to visit doctor after doctor, or even try new medications, supplements or even change my diet. I want to change my diet, I don’t have enough plant food in my house. I love fruits and vegetables. I can’t afford to buy fresh veggies, and I sure as shit can’t afford fruit. I can barely afford meat. If Zolfyer was willing to be vegetarian I could stretch the budget more, but he needs calories and fat, because he’s a healthy, slender athlete and I would like him to stay the first and the third, and he would like to gain weight. I can’t feasibly add more fresh, whole foods and variety to my diet. I can’t plant a garden, I can’t afford pots and soil and seeds because we live in an apartment. Being poor sucks ass. I don’t want to be poor. I’d like to work, but my resume is skewed towards childcare, and because I don’t drive and am a student, no one will hire me. Most decently paying childcare jobs need very specific hours, and require a car, luxuries I don’t have. I can’t afford a second car (we really can’t afford the first one, but because we’re young and have no credit history, the only place, literally the ONLY place, that would give us a car was Volkswagen, and they made us take a new one and get super insurance on it, and Z absolutely needed a car. It was impossible for him to keep his job without it) or the scooter/bike I would be more comfortable learning to ride.

I desperately want to get better, but I can’t even afford to improve my diet from cheap, boxed and processed foods to the more expensive, healthier options. Good food is for people with money, I need to fill my kitchen on 100$ a month, for the whole month. Getting diagnosed and treated is also for people with money, because I can’t afford a copay at my doctor, or a specialist. I can’t afford to shop around for a doctor or a specialist. I can’t afford to receive tests, nor can I afford medications. I simply, can’t, pay for it. The only reason I have a phone is because someone else pays the bill. Z’s phone is about to get turned off. We’re praising the gods that gas has gone down, because now we can fill the tank on 25-30$ instead of 40-45$ We’re happy that my transferring to a new school means I won’t need a transpass or tokens (because public transportation).

Oh, and in case anyone was wondering, I’ve tried all the usual avenues before now too. I’ve tried eating healthier when I could afford it or was living at home. Didn’t work. I got a ton of tests done. Told me nothing. I’ve had ultrasounds and scans of my internal organs and brain, normal. I’ve tried working out, made everything, including asthma, worse. I’ve tried herbs, supplements, yoga, prayer. The only things I haven’t tried are osteopathy and other body work, like acupressure/puncture and massage. I’m sure you can guess why I haven’t, it rhymes with runny. Oh, and cleanses, also because of that funny “m” word and also because I’m not in the mood to sit on the toilet for days.

Let’s move on to the next part of the title, because I’m sure you’re wondering what my being black has to do with any of this. Well, the Agency for Healthcare Research and Quality, part of the Department of Health and Human Services, says:

Racial and ethnic minorities are more likely than non-Hispanic Whites to be poor or near poor. In addition, Hispanics, Blacks, and some Asian subgroups are less likely than non-Hispanic Whites to have a high school education.

Disparities in quality of care are common:

  • Blacks and AI/ANs received worse care than Whites for about 40% of measures.
  • Asians received worse care than Whites for about 20% of measures.
  • Hispanics received worse care than non-Hispanic Whites for about 60% of core measures.
  • Poor people received worse care than high-income people for about 80% of core measures.

Disparities in access are also common, especially among Hispanics and poor people:

  • Blacks had worse access to care than Whites for one-third of core measures.
  • Asians and AI/ANs had worse access to care than Whites for 1 of 5 core measures.
  • Hispanics had worse access to care than non-Hispanic Whites for 5 of 6 core measures.
  • Poor people had worse access to care than high-income people for all 6 core measures.

Few disparities in quality of care are getting better:

  • Fewer than 20% of disparities faced by Blacks, AI/ANs, Hispanics, and poor people showed evidence of narrowing.
  • The Asian-White gap was narrowing for about 30% of core measures, the largest proportion of any group, but most disparities were not changing.

That’s what being black has to do with it. Along with the fact that I’m plain disbelieved. My doctors don’t believe me when I tell them how severely sick I am. They look at me (especially as an overweight asthmatic) and don’t believe that I’m sick without cause. Being female doesn’t help, since females are “hysterical” anyway right? They just tell me to exercise. That’s it. Eat less carbs and exercise. It’ll magically give you more energy, and if you tell me it doesn’t work or makes you worse, I’m just going to tell you to keep doing it, because “it always feels worse before it gets better.” Or, “it works for my other patients.” “I have asthmatic patients who are athletes, surely you can take a walk around the block every day.” No, I can’t, I live in an unsafe, polluted neighborhood because that’s what I can afford, and my marital status, credit, and blackness aren’t used against me. I’m also horrifically paranoid about getting attacked or kidnapped and who wants to deal with getting catcalled? So no, you myopic bastard, I most certainly cannot walk around the block as a pollution, weather, and exercise sensitive asthmatic. Not when I can barely make it up the hill that I walk up every day for months. Oh, I thought your body gets used to exercise after time. WHY AM I NOT USED TO IT SIX MONTHS LATER THEN?

Sorry, touchy subject for me. Still, I find that I really can’t even fully express my symptoms to my doctors sometimes. If they don’t start talking over me as soon as I mention my pervasive exhaustion, they blow off other symptoms. I can’t even get to articulating some of my more alarming symptoms, especially the mental illness ones. Every physical issue I have has some “explanation” and well, my tests are normal, so it must just be in your head or not as serious as you’re making it out to be. Except it’s not, I know what’s in my head, and it’s a pretty scary place by the way, but I don’t know how you’d react to exactly how scary it is, and you’re questionnaire doesn’t ask or is too specific (or not specific enough), so I’m not going to tell you doctor. As well, I know these symptoms aren’t in my head, because sometimes when my mind is being a loser, my body gives me a brief break, and vice versa. Besides, I can’t afford a worse diagnosis than depression and anxiety, not when I can’t afford an inhaler, because the closest pharmacy wants 50$ for what should be a 10-20$ prescription, much less whatever it’ll cost for you to give me the crappy SSRI or anti-psychotic instead of the shiny, new shit you’ll give to your skinny, white patient which are still expensive. I can’t afford to have to go through multiple medications to find one that works either. I can’t afford it because it means my insurance company will discriminate against me even more. I can’t afford it because, even though it would probably benefit me to have such a diagnosis to access services, I don’t have the energy or patience to jump through the hoops to get those services. Nevermind that if I can jump through all the hoops, well I’m not quite as sick as I am trying to make out to be am I? Oh, silly me, it wouldn’t matter since services discriminate against me as a black female too. Heaven forbid I’m a drug-addled welfare queen! Seriously, having kids fucks you over only slightly less than not having kids when you’re seeking assistance, especially considering that many states require you to jump through hoops of flaming shit in order to keep benefits, and that is extremely difficult with children, but without children you might not qualify at all, or qualify for less than you genuinely need.

I say all this, to complain about being sick. I’m extremely frustrated with my health, especially my mental health, and my inability to even attempt to fix it. Meanwhile, my health is hobbling my efforts to get the resources I need to try and fix said health. Fun times as a sick person.

Who am I to suffer?
Who am I to cry?
Who am I to weep for the rain that passes by?

“There’s war upon us darling!
There’s starvation,
Genocide!
Who are you to wish upon the will to die?”

And who am I at all?
Who am I to dare?
How could I be so callous,
So self-centered to despair?

There’s suffering in Detroit,
There’s children whose plates are bare.
I have a roof, a job,
Some water! Oh how could I dare?

Suffering is labeled.
It’s a commodity you see,
Since there is always someone worse off than me.
Such things of course matter to those who have the mind.
They like to spout about “how could you be so blind.”

The funny thing about it though,
Is madness does not care.
It will take the suffering and magnify it,
Like a flare.

Resist the deepest sludge,
Go ahead, struggle in it,
Feel it sap away your life
And tell me if you’re in it.

Well who are you to suffer?
Who are you to bleed?
Who are you to struggle or determine another’s weeds?

Who are you to codify what counts and what does not?
Can you prove there is a proper way to suffer
And what is not?

People, the Media and Mental Illness

If there’s one thing I can’t stand it’s the media on mental illness. What else I can’t stand? Drama swarms. That’s what’s occurring right now, just like it does every time a famous person falls to mental illness (of which substance abuse is part). This is the same nonsense that happened when Michael Jackson died, or any other celebrity who has passed away because of their sickness since then. Don’t get me wrong, I love Robin Williams. He was a wonderful actor, a fabulous comedian and a fucking amazing human being. But because he died due to mental illness, the noise surrounding his passing is pissing me off.

You see, the illness is overshadowing his death and the media is using that. They aren’t reporting on the tragedy of losing a wonderful man, they’re reporting, in dramatic fashion, how a mental illness killed him. In some sense they are preventing his family and his fans from rest and mourning because they’re blowing things up that don’t need to be lambasted all over everyone’s computers and televisions. Yes, he was ill, yes it was his illness that killed him, but they don’t make so much noise over cancer or heart disease. Report it the same way you would if he had died from cancer or heart disease, because you’re just taking advantage otherwise. You’re just being sensational and annoying.

What really strikes me though, is how the same old narrative comes up again and again every time this happens. The fake, shallow, disinterested and evanescent pity and sympathy. The cries and pleas to people to “get help” and “be brave” and “find support”. The moaning and groaning of the horrors of mental illness that don’t mean jack shit. It means nothing because it’s all a farce. Nobody cares. Nobody, fucking, cares. The media doesn’t, and plenty of people who reblog and retweet and instagram and pinterest and facebook all these bullshit memes about depression and mental illness and go on and on about how they want to see change and be supportive and yammer about how people should get help do not care. 

Wanna know how I know? Because in two weeks, if that, those same people, those same media outlets, won’t have anything more to say on it. Well, the media will, actually, but it’ll be how a mentally ill black man, or serviceman hurt someone, or a crazy bitch drowned her kids or sold them on craigslist for crack money. It’ll be about how “omg that white man was such a nice person how could he shoot all those kids?” And “those fucking immigrants are stealing our jobs and killing each other!”

It’s the same bs that happens over bullying and student-led school shootings. “This kid was severely bullied, that’s why he shot those kids, we should do something about bullying and gun control!” Ha, hahaha, yeah, ok, where are you the next day then? Where is your noble ideals (which are so myopic and vague as to be useless), your renewed dedication to helping these people and kids have better lives and healthier minds?

It’s all bullshit because they don’t live up to their promises, they aren’t there. They don’t fucking show up because they don’t fucking care. That’s what I hate about this. There are a ton of people I know who care, and why do they care? Why, because they’re sick of course! There are healthy people who care too, but you’d be amazed at how even the genuine ones can be so damaging and short-sighted.

I would rather people say go fuck yourself than harp on in their self-righteous statuses and tweets. Here’s the thing, mental illness is not simple. Even for people with the same diagnosis, no patient is the same, no one experiences the illness in the exact same way. My depression does not strike me down the same way it does to my best friend. My other friend’s bipolar disorder doesn’t present the same way my aunt’s does. The meds that work for my online friends don’t do shit for me, or make me feel worse. I know more people who have given up on therapy because they’ve tried every kind out there at least three times than I’ve ever met people who say it works for them. In fact, I don’t think I know anyone it’s worked for, and if I do, I definitely can count them on my fingers, probably one hand.

These pointless narratives that crop up every time a famous person’s disease is plastered all over the internet drive me insane. They mean nothing because no one is invested. And moreover, this seesaw of interest and disinterest is hurtful. It hurts people. It hurts causes, the same way that an idiot volunteering for something they don’t know anything about is hurtful. The same way lying about your credentials hurts people. Worse than that even, because lives are at stake. I don’t think people really get this point.

All this talking about how mental health care should be more important, and more available and how more people should seek it is empty. There isn’t any follow up to actually make these things more important, available and affordable. I need mental health care, but I cannot afford it, I cannot find it and what I can find and afford is low quality and therefore useless to me. On top of that, those same people telling their sick friends cheerfully and forcefully about how they’ll be there for them abandon them or mistreat them, all while thinking in their minds how cool they are for being “supportive”. And out the other side of their mouth begrudge the ill for their illness, sometimes to their sick friends’ faces.

It is difficult to trust the healthy, because they see with clear vision and think with clear minds. They see things as easy because they are not mired in the swamp and covered in fog. Moreover it is difficult to convey to them your suffering and what they learn from casual conversation is so ridiculously oversimplified and full of prejudice that it doesn’t help them understand. Gods forbid if they’re willfully ignorant. So they tell you go to the doctor, go see a therapist. They tell you about all the articles on facebook they read and the advice columns they’ve seen, articles and columns you’ve read already and tried. They keep bringing them because the genuine ones are trying to help, but they’re not listening and they aren’t understanding. And if they’re the shallow ones who shout at the top of their lungs how helpful they are and yell the loudest about the torment of mental illness but don’t do anything about it, well they’re just stroking their own egos if they deign to help poor, weak-minded you. Why, you just need to get out more, or stop listening to that music, or try this yoga class, or eat this food, or try this supplement, or go see a doctor for heaven’s sake otherwise you’re not feeling that bad are you?

I truly hate the stigma around mental illness. Everyone has an opinion on it, but no one actually cares to learn about it. It’s weakness they say, it’s stupidity they say, it’s laziness, it’s attention whoring, it’s a personality flaw. You’re not feeling that bad if you don’t do xyz, you deserve it if you’ve ever done abc, if you would just blah blah blah then you wouldn’t be yadda yadda yadda. It’s easy to get rid of, it’s fake, there’s resources everywhere! Try harder! Oh my gods, your life isn’t that bad! There are happy kids starving in Africa, get over yourself! I know someone worse off than you who isn’t sick! I’m in just as bad or worse of a situation than you and I’m fine! Get a grip, pull yourself up by your bootstraps! Who do you think you are, having feelings, having sickness, losing strength? Who do you think you are, having difficulty? Who do you think you are, struggling? Who do you think you are, suffering?

Depression and mental illness are little demons that eat you. They eat your mind, your heart, your fucking soul. To use a concept from my religion, it is isfet, it is unmaking. These things are terrifying in their power to destroy, and they are not destroying to make room for growth. They are bombs, they are chemical fires, they are nuclear radiation. They are destroying in an attempt to crush, to vanquish, to wipe out. They are trying to make it impossible for things to ever grow again, and when things do manage to grow, because thankfully life is fantastically stubborn, they come back. And they are cruel in their working. They find the little bugs and weak seedlings, and crush them between fingers before pouring poison on the ground of your heart and mind.

And they keep coming back.

If you were alone in your house, and a gang came in with guns, knives, flamethrowers, rocket launchers and grenades, what would you do? You have weapons sure, but you’ll probably run out of ammo first, if your ammo is even useful. You might even have an army, you might be able to push them out and keep your house, but you’ll have problems. Your house is damaged, you might be injured. Things are broken, things are burned. You’re exhausted, you’ve used a lot of your ammo and your supporters are either dead or exhausted. But those bandits come back. Maybe it’s not the next day, maybe it’s not the next month even, or maybe it’s the next hour. But those motherfuckers are back, and they’ve got fresh bodies and more ammo than last time. You haven’t regained your strength and your ammo is either still low or just back to where it was before the first assault. Your house might be back in order, or it might not. Gods help you if you’re on the bad end of recovery. Let’s say you make it through that battle. Well now you’re even worse off. Guess what though? Those fuckers are coming back. Each time with new recruits, more and probably better ammo. Eventually you’re going to fucking lose.

Let’s say you go to your friends, family, coworkers for help right? Some of them will definitely help you. They grab their guns and are at your house within minutes. Some say they’ll come but never show. Some tell you no, at least they’re honest, and others ignore you. Still, after the second or third time, even the help you receive is going to be pointless. The commendable people who step up are going to get exhausted, and if they don’t, you’re all still too low on energy and ammo to hold the house. Well, maybe call for more back up? Those people who tell you no or ignore you are whatevers. There will always be people who just don’t care. But how about those who say they’ll show up? You have hope! You have reinforcements! And they don’t come. You call them again, and they might come up with some bullshit excuse, or tell you no. What was more hurtful? The people who said no or ignored you from the getgo? Or the hopeless disappointment from broken promises and careless betrayal?

Now we move on in this scenario. You keep reaching out. The bandits have your house, they’re hurting you and your supporters. But what do people say?

“You’re just full of it, those bandits aren’t that tough. You aren’t fighting hard enough.”

“Why don’t you just go get more weapons and ammo?”

“Why don’t you get used to it?”

“Why haven’t you called the Army?” (You have, they just can’t get to you. There are more important things for them to deal with. Or they expect some sort of compensation you can’t afford. Maybe they have a complicated process that makes trying to get their help pointless, or perhaps you just can’t get the right phone number. Maybe they’ve already come and only made things worse, or temporarily better).

“Have you thought maybe you attracted these bandits?”

“Your house is too cushy and well-guarded for you to be really suffering from such horrible bandits.”

“You just need to learn how to defend your house properly.”

What would you think? What would you do? These bandits aren’t going away. They’ve burned your house down. You’re hiding in the woods, trying to keep up guerrilla warfare. And oh gods, now they’ve got you. And they’ve locked you up in a cell. They know all the right ways to torture you. Maybe it’s drugging you, maybe it’s forcing you to suck down booze. Perhaps it’s throwing you into a dark pit, then suddenly turning on a hundred flood lights. Maybe they lock you in chains and then throw you on a roller coaster or strap you to a train. Or, it’s putting you in a tight closet, with just a match, for months.

Maybe they let you out every once in a while, or your supporters manage to break you out. It’s often a farce though, they know exactly where you are and they’ll come back for you. They’ll do even worse things then. Maybe they’re cruel enough to leave a little something for you. A gun with a single bullet, a belt, a bottle of pills with some water. A knife. Those drugs or booze they keep giving you. After a few more rounds of torture, maybe torture with a short lived freedom (which is its own kind of torture), those little things look better for yourself than the enemy. After all, a bullet won’t get you free of a house full of bandits. Nor will a belt or knife unless you’re James Bond or Jason Bourne.

This is mental illness. This is what you’re telling your loved one or friend or colleague to suck up, or what you’re trying to tell them to get rid of with sunshine and fake smiles and yoga and whatever else is the popular one-size fixes all thing. Sure, some of those things help, sometimes, but by themselves, especially for someone in the very depths of pain and sickness, they mean nothing but another thing to fail at and despair over. It’s shallow advice that doesn’t care. It is advice that does not care and is totally blind to the destruction of their hearts. It is simple to the point of being asinine and useless. It is myopic to the  point of being able to see your nose. You cannot just think away, or eat away, or exercise away, mental illness and for fuck’s sake stop telling people to do it.

Then there’s a little psychological phenomenon called learned helplessness. You see, when creatures are tormented and can’t escape, they learn there isn’t any point and stop trying to get away. The psychologist Martin Seligman first studied this phenomenon with dogs. He chained them inside a box where the floor delivered electric shocks (although some accounts say they were locked in a cage that did the same thing) and noticed that eventually the dogs stopped trying to escape. Even when they were unchained (or the door was opened) they didn’t move and wouldn’t move. They had to be dragged out and shown that now they could escape the situation.

People with mental illness experience learned helplessness. It is a chicken and egg case here, because sometimes it is the learned helplessness that contributes or causes the mental illness and sometimes it is the other way around. It doesn’t matter, people with this particular syndrome (and any sickness) need to be shown with love, compassion, sincerity and patience that there is a way out. But the way out needs to be clear, well informed and tailor made. Good intentions are not good enough. Anything less is insulting and damaging. Sometimes the way out is simply being the one who actually shows up when they say they will. It might not mean putting on your armor and grabbing your M-16 and C4, it might mean being the shield, it might mean bringing the food. It might mean just saying “I’m fucking here, no matter what happens.” You don’t have to try to fix everything, most times we don’t want you to, mainly because you can’t. You can make things better, but the problem, the broken program, the house being overrun by bandits, is in our heads, so you can’t directly fix it. We don’t need you to fix the problem, but we do need you to fix the IT center that handles our calls, we can’t just turn it off and back on again. We need you to fix the Army that should come and help us kick the bandits out of our house and keep them away. We need you to be there to back us up, to break us out, to bring the rations, the ammo, the shield, the attitude and dedication that you’re not leaving us stranded and broken no matter what. You don’t have to bring us everything at once, you don’t need to give us the newest shiny “cure” or suggestion. You just need to love us, to be compassionate to us, to be patient, to be sincere. You just need to do your damndest to understand and to listen.

What we need is love, not this loud and empty yelling to your ego. Not this pointless, hopeless charade that people call “helping” and “supporting.” What we definitely don’t need is yet another clueless asshole inflating and insulting the death of a person in a two-faced narcissism contest. What we don’t need is another person yelling at us to go get help when we have tried so hard to get help and simply can’t because the help doesn’t exist or doesn’t work. We don’t need another person telling us we’re frauds or fools or weak because we’re supposedly not listening to them. We don’t need people who will twirl their wands to make it look like they’re doing something and then walking away as soon as the shininess wears off, or turning around and slapping us in the face for asking them to make good on their promise to be there, or help or make help more available.

 

Something that many writers will tell you is that characters often take a life of their own. I have one character, a little girl named Elizabeth. She’s gutsy and sweet and way too honest as most kids are, and her dad is a recovered addict who suffers anxiety and depression. She asked her father what an addict was.

“An addict is a sick person who uses medicine the wrong way and for the wrong reasons.”

“Why would they do that?” She asks.

“Well, it’s because for a lot of them, they’re in pain. But, not just physical pain, like your arm hurting, but emotional and mental pain too.”

She ponders for a moment and climbs into his lap. “So, it’s like love pain?”

Now her father is laughing. “Love pain?”

“Yeah, like, not getting enough love hurts right? It hurts you all over, in your head and your chest and stuff.”

“Yes, it does.”

“So they’re hurting because they need more love. They have love pain!”

Chuckling. “Yes, I suppose many of them do have love pain.”

“Why do they stay addicts when they get more love?”

“Sometimes they can’t feel it. Being an addict makes you sick. You can’t smell when you have a cold right? So how would you know something is tasty?”

“Well you would tell me!”

“But, you still can’t smell it or really taste it yourself. You have to get better first.”

“Is it hard to get better from love sickness?”

“Haha, yes, it’s hard to get better from that, in both senses of the phrase, even when you’re getting lots of love and attention and good medicine.”

“You got better.”

“It took me a while, but lucky for me, a pretty little girl with more love than anyone was given to me. Even then, I still needed lots of help and love from others. I’m still sick, but not as much.”

“Well then I’ll just have to give you more love!”

We need more love, not more hype.

Broken

I used to fly on gossamer wings of ice
Until the sun struck me down.
It cut me open and watched my heart bleed
On the sky, the clouds, the wind.

It wove my life into ruby vines
That touched a golden ocean,
And stained the cerulean fibers
Various shades of purple.

The clouds were dipped into the paint
The paint that was my soul
And now their wispy forms are red and blue
And gold.

I fell to earth and shattered,
My wings of ice destroyed
And everything about me torn out and used as toys.

Brutal god of wonder
Vicious god of light
How cruel you are to rob me of my flight.

Whisper, whisper, as weak as a breeze.

Quiet, quiet, you’re among trees.

Listen, they only talk in a hush,

Listen to them speak in a rush.

Dark amongst them, yet they live in light,

Catch their words as they speak to the night.

Lost, get lost amongst their breath,

Then you’ll never know what happens next.

Death in their leaves, watch them fall apart

as the sky darkens and the warmth departs.

Are we not so much like them?

Can we escape their fate?

Even the evergreens eventually sleep.

Silence, silence as the cold settles in

but you can hear their whispers even then.

Pain, pain as the new growth starts.

Will the warmth return, will the morning star ignite?

Rebirth, they cry, resurrection is here,

hear their hushed and private tears.

A wish, just one, floats on the wind.

The wish, the hope, to live again.

A Short Encounter

I backed into the wall as he approached me. My heart raced with excitement as I felt the cool surface meet my back. He placed one hand by my head and another by my shoulder and leaned close. He smelled strongly of water, like he had taken a walk in a light rain and rolled around in the grass and earth. He might very well have done so today. It was a sweet smell, like flowers.

I tried to steady my breath as he put his lips to my ear.

“I need you to understand. This is no game. Do you know what you’re getting into?”

His body gave off an absurd amount of heat inches from my face. I could sleep naked with him and not be cold, even without a blanket. I tried to fight back the blush creeping up my neck at the thought. He chuckled, putting his face into the crook of my neck and inhaling deeply. He then pulled back to reveal his face.

My eyes went wide. His eyes were a vibrant orange-red, like a smoldering charcoal. They seemed to be alight like charcoal, as if they were literally lit. I could taste a hint of magic, it prickled my tongue like PopRocks and washed through my body like adrenaline. Holy shit.

He smirked. “You’re such an interesting human.”

Something about that smirk and that statement set my heart down a racetrack. Suddenly all I could see was danger. Here was someone who could destroy me. Not just maim, or kill, but destroy. He could annihilate me and feel no remorse. Not because he was cruel or sick, but because animals don’t have morals like humans. Yet, he would likely never do such a thing. I was too valuable, for now at least.

A Short Poem

How could anyone remember
How can anyone forget
What it feels like to burn,
How it feels to disintegrate?

How can you know my pain
How are you aware
Of my endless suffering
And know the pinch of every hair?

Are you listening?
Can you see?
Do you feel?
Can you hear?

Is the pain in my heart too close
Or too near?
Is it far so you understand just with your eyes?
Is it too far for you to despise?

It’s eating my heart,
The flames will consume it
But how could they know?
They only see the reunion
Of acid and earth, whittling away at
Each other.
Murderous friends and blasphemous brothers.

Are you watching?
Can you smell it?
Is it acrid?
Are you jealous?

This poem is unfinished and subject to change