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.

Why Saying "Not All X" Makes the Problem Worse

For people who wonder why saying "X isn't all bad" (ie. "Not all Cops" or "Not all Men") is an issue, maybe this will help.

Let's say you live in a neighborhood and there is a fire. Several houses are on fire, but not all of them. The firefighters come and start spraying down all the houses, on fire or not. Some people whose houses are not on fire are very adamant about getting an equal spray down for their houses, even as the ones on fire aren’t getting enough water to slow the infernos. This seems silly, right?

The houses that need the water are ON FIRE, the others aren't benefiting from it and might actually be being harmed (water damage). In addition since the firefighters are not all focusing on the houses on fire, the fire could grow and spread and take out the entire neighborhood. Obviously the people whose houses are actively burning down are going to be upset in this situation. After all, it's their houses burning down, but it isn't just an issue just for the houses that are on fire either though. No matter how you look at it the entire neighborhood is at risk if the fires in those particular houses that are actually on fire aren't put out quickly, efficiently, and permanently.

Basically by saying "X isn't all bad" you are being the firefighter shooting water at a house that isn't on fire or, if you are being completely insensitive, one of the short-sighted and selfish home owners who insists on their house being sprayed even though it isn’t on fire. You are turning the focus away from the very obvious issue (houses are on fire). In addition you are actively harming the X's that aren't doing the bad things by making it seem like the innocent X's are against addressing the issue and dealing with the non-innocent X's obvious problems. Yes, not all "X’s" are generally never ALL bad, although exceptions to rules always exist. Generalizations are generalizations after all. However when specific houses are on fire it really doesn't matter that others aren't, you know? Everything could end up burning down if you don't actively work together to solve the problem while it is still manageable.

Masks and Manliness

I've been thinking about "manliness" and the whole "hold my beer!" mindset. I see fewer men than women wearing masks properly (or at all) in public. I've seen enough commentary to know that some guys think (in a very paraphrased for public consumption way) that wearing masks isn't "manly." This hurt my brain for a bit.

I think I get it now though. I think it's part of how toxic masculinity is affecting our men. They've been taught that to be "manly" you cannot show fear even in the face of terrifying things. You need to be able to work an 80 hr work week, pay all the bills, gun down all the baddies, chug a 12 pack, burp the alphabet backwards and then face down a charging lion, assured by your own male superiority that you WILL WIN! NO FEAR!!!


If you were raised steeped in this toxic stew of fear, even healthy respectful fear, equating to weakness then it makes sense to not wear a mask. It makes sense to want to reopen before safety measures are in place. You are the bread winner. You are the protector. You HAVE to be safe and prevail because any other option means you are weak and you can't be a guy and be weak...

It's so sad how much damage our culture has done to our men.

Sitting with Fear: Covid-19

Fear.

Fear is a thing most people rarely have to sit with.

Fear is a thing people avoid. They run from it. They close their eyes and pray it will go away.

Sometimes fear doesn't go away. Sometimes it is there to stay and nothing you do or say will convince it to leave.

Fear makes people want to lash out, to find a scapegoat, to find something, anything to blame and punish that might possibly make the fear go away so they no longer have be there, soaking in it, marinated by tears and anxiety and what ifs.

Fear is an unknown. It is about the unknown. It is about lack of answers, lack of stability, lack of safety.

Fear is that moment when you were little when you lost your parent in the store and had no idea where they were and if you would ever find them again. But then you did and all was well. That can't happen right now.

Right now we have to live with our fear, hold it's hand, comfort it like we would the little child crying because they lost their parent.

The thing is, it will get better. It might also get worse. It will very likely do both and possibly at the same time. That's a hard thing to digest, much the less accept.

Change happens. Change is scary. The unknown is scary. But Time also happens. Things change. You never step in the same river twice.

This isn't where we want to be. This isn't the life we want to be living, but it is the one we were dealt. We get to choose the cards to play, make the best of a bad hand and do our best to find some little bits of good among the fear.

Like with a chronic illness, it's not about what you've lost. It's about what you are still able to do. Mourn your losses and then focus on your strengths. Focus on what you CAN, not what you can't.

You have the choice every single moment of every single day to choose good. You aren't perfect. You won't get it right all the time and that's ok. Just try to choose the good over the bad as often as you can.

Learn to live with your fear, to comfort it when it cries out in terror at our current world. Know that you aren't alone. We are all here in this together. The world will get though this and will keep on turning.

Mantra

I will remain true to the person I know I am.
I will honor myself by not allowing myself to be pulled into drama.
Although the unpredictability and cruelty of the world may hurt,
I will not allow myself to be pulled down by it.
I will remain a kind, loyal, and supportive person throughout it all.

The universe made me who I am.
There is only one me.
I matter.

Is insecurity really a character flaw?

This world equates attractiveness with confidence and independence.  There is a constant disparaging of insecurity.  People call it being clingy and needy, a character flaw that needs to be "fixed" and anyone who cannot "fix" it or at the very least hide it semi-successfully is a failure on top of the crime of being insecure.  This concept is no more than a hold over from when mental health care was electroshock therapy and real men didn't cry.

Lets break down the word itself.  Insecure means "not secure" and secure in this instance means "not subject to threats, certain to remain safe and unharmed, stable, and free from anxiety."  So basically being insecure means you do not feel safe, stable, and free from threat.

Say you are walking along and suddenly, with no warning at all, the ground gives out as you place your weight on it.  You fall.  It hurts.  You try to figure out what happened so you can avoid falling next time.  You pick yourself up and go on with a shrug.  A while later, it happens again.  Then at another point, again.  And again.  It gets to the point you never know which step will give out.

There is no pattern you can discern.  You just know that every time you walk there is a chance you will end up losing your footing this way.  Over time you learn to adapt somewhat.  You figure out how to catch yourself up short when you feel the ground give way.  You learn to walk more carefully, more slowly, always testing the ground.  You see other people running freely without a care in the world because the ground never gives way for them, and you are envious and at the same time glad they have safe footing even if you do not.

Now you know what it is like to be insecure.  You do not feel stable, or free from threats.  You never know if the next step is safe or not.  It does not make you a bad person.  It does not make you less than or not good enough.  It simply means that you are not in a space where you feel safe.

People with anxiety are by definition insecure.  Anxiety is a glitch in the brain, an over active fight/flight response, which in many cases is caused by a history of trauma.  You can move past insecurity (and anxiety) with time and patience, but it involves learning to trust that the ground will not give way without warning.  That is a hard thing to do when the ground keeps randomly giving way.  Think about the levels of courage and trust it takes someone to keep taking that next step knowing each time that it may be the one that drops them to the ground in pain again.

Many people can get from a place of insecurity to a place they feel secure if they work on it and if they have help and support, but insecurity is more often than not a symptom of lack of safety and stability in a person's life or past, not a character flaw and should be treated as such, not demeaned by the people who do not bother to understand it.

Why is one person's passion "less" simply due to level of education required?

Somethings about our world make no sense.

Everyone knocks fast food workers, but most people eat fast food. What if someone truly loved working in fast food? What if it was the job that gave them true fulfillment? They would be told it's an entry level job, that they need to spend tons of money and go to college to earn a degree in a field that is not nearly as fulfilling to them to get a job they hate just to make more money.  They would be looked down on for fulfilling their passion, all the while treated as less then, and likely as unintelligent, simply due to their method of earning income.

On the other hand, what if that is the only job someone can hold?  What if that is where their skills lie and even with training and patience they will never be successful in another career?  What about the people who went to trade schools instead of college?  Those who work with their hands instead of their brains?  And what about the people who simply do not care, the people who simply want to be service drones, put in their hours then go home and live their lives?

Why shouldn't someone be able to support themselves working in a job they truly love, even if it's one that isn't "good enough" in the eyes of society? Why do we honor people's passions with paychecks they can live on only if those passions need degrees from four year universities?  Why does it require a college degree to earn enough money to support yourself "respectably"?  Why would anyone think that there should be full time jobs that do not pay enough to support a person working diligently at them?  We are not talking getting rich flipping burgers, simply able to pay for food, bills, medical care, and a roof over your head.

Everyone agrees that basic fast food work should not pay as much as a four (or more) year degree trained field, there is something to be said about rewarding the extra work, effort, expense, training, and skill involved after all, but why are the people who can and want to put in the extra time and money the only people who deserve to be treated respectably by the rest of society?  Why are they the only ones who deserve the most basic of financial stability?  Why are their passions the only ones society values?  Why do we link income and education level to worthiness?  Stop and think about it.

Worthless or Priceless?

English is a weirdly put together construct.

According to Merriam Webster, "priceless" means having a value beyond any price and "worthless" means useless, contemptible, and despicable.  However, "price" means the cost at which something is obtained and "worth" means the value of something measured by its qualities or the esteem in which it is held.

It would seem, looking at the words themselves that "priceless" and "worthless" ought to be synonyms.  The words "price" and "worth" used to be considered synonyms, after all.  That is not how the English language works though.  Priceless is something beyond all measure of wonder, and worthless is the bottom of the bucket, scum of the earth.  Two words, that by all rights and means should mean the same, are turned into antonyms by English.

My depression often makes me feel worthless, but at one point someone who cared turned that word around for me.  Worthless then meant worth more than any price.  I'm struggling now, but I am holding onto that.  I have people showing me that, even when my brain is loud and raging against me, my worthlessness is in reality priceless and that I truly matter.

This is the dichotomy of my life.

Her Guardian

The uneven forest floor tore at her feet, her stockings long since shredded in her flight.  The cold of the moonlit night barely numbed the pain and the faint sounds of pursuit growing closer confirmed her trail was impossible to hide.  She threw herself down among the roots of a tree, her heart pounding as she gasped for breath, hoping for concealment among the shadows. She burrowed the fresh gentle curves of her body into her shawl in a likely futile attempt to hide its treasure from their ravenous eyes, dread filling her as the crude slurred comments drew ever closer, leaving no doubt to their intentions as though the already forming bruises had left any.

Curled up tight, eyes screwed shut, silently praying they might miss her in the darkness, her body stiffened in shock as an unexpected wave of safety and comfort washed over her with a wafting scent at once familiar and exotic.  The sounds of the men dulled in her ears as she felt soft, heated velvet nuzzling against her, the musky, sun-drenched scent of horse and jasmine enveloping her. Her eyes opened, her face tipping up, caressed by draping strands of deep midnight forelock and mane, his curling obsidian horn standing guard over her like a sword for a mere instant.

The brutal men forgotten, she blinked transfixed by him as he stepped back, his hooves silent on the leaf litter, instantly gone in the stillness of the night.  The stench of booze and man suddenly crashed down around her, the alien glow of torches intruding on the magic of the moment, her breath catching in horror as reality clarified around her.  Rough calloused hands grabbed her, ripping her from the scant safety of the tree roots as they ripped at her clothes. She fought against their grasp, twisting and biting with strength she didn’t know she had, gasping breath to scream into the uncaring blackness.

Still kicking and fighting, it was a moment before she realized the attacker in front of her was gurgling a scream of pain, his back arching, arms flung out, hot flecks of his blood soaking onto her night-cooled skin.  She staggered back, frantically trying to take in what she was witnessing as the men around her reacted too slowly, releasing her too late as confusion bloomed on their faces. The confusion shattered into fear as as incarnation of terror tore through them, horn drenched in flowing blood, mane dripping with it as one after the other fell watering the roots of the forest with their life’s blood.

Scant seconds later peaceful silence returned to the forest as the men’s bodies came to a final rest among the leaves and roots.  In shock, her back plastered against rough bark, the remnants of her clothes nothing but shreds, she absently smeared blood across her face with the back of her hand in a failed attempt to clean herself as she tried to make sense of it all.  Emerging from the darkness, his dark warm presence was once again enveloping her in safety and comfort, the soft velvet nose that nuzzled her now damp although the night didn’t allow her to see the blood against his midnight hide. She leaned her forehead to his, resting cuddled beneath his horn, allowing herself a moment to bask in the magic of her protector and hide from the horror of the world.

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.)