Political Medicine

I’ve always known we had issues with our medical system. Over specialization (lacking the ability to see the whole picture), lack up updating current data and going off of antiquated literature, inability to think ‘outside the box’ for those of us that don’t fit in them, and lack of advocacy for those suffering chronic conditions. Bias still exists in the medical field. Patients have had to advocate for themselves, educate their own doctors on conditions misunderstood or conditions most medical professionals are simply unaware of.

But I never expected that we would simply change our medical system to political medicine. Never did I expect that government, big corporations, and a portion of society would accept this change at the expense of the vulnerable and those fighting for body autonomy. Never did I expect so many to go along with it, unquestioned and spew so much hate towards those that know a medical system of ‘the greater good’ would be harmful to apply across the board and be harmful to those of us who are vulnerable.

I’m thankful there are still some good doctors and medical professionals who are standing up for body autonomy as we are not a one size fits all society. It is not possible to be without causing harm to a portion of the population.

Where do we draw the line?  We fight hard enough to be heard by uneducated doctors and society who have no idea of the health conditions that exists among us who have no understanding of the day to day of what we go through and we expect the government and big corporations and society in general can suddenly make those decisions in our best interest? And to stand up for our own bodies, health, and situations is now suddenly ‘harmful’ and ‘unethical’? How did something right become wrong so quickly?

Just Eat The Cookie and Die

It’s amazing to me how many people are willing to sacrifice others for a false sense of security, to make them feel safe. It’s even more amazing when it comes from someone in your own family who has had the time to know your life, your experience, your health issues, your story, and yet they still want you to eat the cookie that could potentially kill you, just to make them feel safe.

The cookie in question would be a cookie that you have a known allergy to, as well as a prior history of eating that cookie and having your health destroyed. Knowing there are many others like myself who have also eaten that cookie and had the same reaction and struggling just to live life with the myriad of conditions and health issues spurned by those damn cookies.

Those cookies destroyed my health. When trying to find out why, no one seemed to care. What makes my genes different? What made people like me respond in the way in which we did? There’s an obvious genetic component involved but no one wants to study the issue. Why? I can only assume, since the manufactures have no real liability, they have no real incentive to research the issue. Studies costs money. There are many many willing participants who’d love to be involved to see what makes us different so we can enjoy a safe cookie like everyone else but we’re the minority and I’ve since learned, we really don’t matter. No one wants to spend the money and they likely don’t want to admit that their cookies can cause that kind of harm in the first place.

For two decades, I’ve brought up these questions. I’ve asked medical personnel. I’ve been silenced, gaslit, and told correlation doesn’t equal causation… Let’s think about that last statement. Correlation doesn’t equal causation. Wow, can that apply to many things but in my cookie case, it almost always seems to apply. We know that only a small number of people have their injuries reported in the first place. This is fact. Even drug reactions are rarely reported, I’ve witnessed that many time. If these reactions are not being reported as they’re supposed to, then we don’t have a legitimate accurate database where we can see how many people had the exact same reaction and how that reaction grew over time. We miss the obvious, that many have had that same response and correlation is looking much more common than otherwise reported. Seeing those numbers would then, ethically prompt more research into the issue. Just like a black box warning applied to meds that were later deemed unsafe for a subset of the population. But cookie injury reporting is one of the least of all reported types of injuries. Again, is it the lack of liability? Why wouldn’t we want a safe alternative for those who can’t digest it?

In becoming injured by those infamous cookies, health declining and disabled, I have become the vulnerable. The vulnerable who can no longer eat of those cookies. It would be harmful to my health and since we don’t know what the mechanism is behind it, we have to assume it’s the entire cookie. Had they researched the issue, maybe we could have pinpointed something in it or understood the way in which my body processes those cookies but again, no one cared enough to investigate the issue. In addition, current cookies now contain an ingredient that I do have a known allergy to. And sadly, I was told by my own family member that I should eat it anyway. Aren’t they the ones who are supposed to eat the cookies to protect me? The ones who can’t? That’s the line we’ve been fed for generations yet that somehow suddenly doesn’t apply? Or is my family member just being toxic and selfish willing to sacrifice another for the impression of saving himself? That’s what catering to the ‘greater good’ does to people. It’s always at the expense of another and I just so found out, I am the other they’re willing to sacrifice. Doesn’t look good on this side of the fence.

Silent Echos

Crying a dozen tears,
collecting puddles along the way
Anguished over lost years
Waking to the same, each day

Feeling trapped, paralyzed with fear
Heavy chains pulled tight
Is there no one to really hear?
I toss and turn throughout the night

A body that won’t comply
An overwhelmed and angry mind
Struggling with the thought of goodbye
Will there be a rainbow that I find?
Or am I lost, lost, only to be left behind… DM 7/5/21

The Sacrificial Greater Good

I’ve been hearing the term, ‘The greater good,’ quite a bit lately. Apparently, it has it’s roots in Utilitarianism.

utilitarianism: the doctrine that actions are right if they are useful or for the benefit of a majority; the doctrine that an action is right insofar as it promotes happiness, and that the greatest happiness of the greatest number should be the guiding principle of conduct. (via our lovely google dictionary).

On paper, it seems right. It often shapes our decisions in life and helps us to make decisions that would benefit the most. But what about those who become the sacrifice for this greater good? That is an often, swept under the rug discussion that can quickly turn ugly if not silenced quickly. I’ve had the unpleasant experience of being the sacrifice more than once in my life and it’s opened my eyes to an uglier side of society that has no room to take a true look at what that looks like. Closing their eyes and shutting down so they don’t have to face the harm that their decision could cause. Is it just their way of protecting themselves and their feelings about the matter rather than facing the ugly truths that exist?

I’ve noticed those that are ‘plugged in’ will have the same lines of thought, words of indoctrination (?), using the same style of language and lingo to justify their viewpoint and leaving no room to think outside that box. It’s a split society in those situations that have painted the picture as either black or white, ignoring the gray that sit in front of them as if it doesn’t exist. They will argue vehemently to defend their position and give you absolutely no room to simply discuss the fall out from that line of thinking. Instead of critical thinking and curious discussion, it’s near immediate ego insulting and name bashing against the one who sits outside the box both in thinking and in experience. Their way is the only way and anything else is pure selfishness.

Yet, life is not black or white. There are sacrifices to the greater good and their voices deserve to be heard. After all, isn’t it my sacrifice that keeps you going? Let’s look at WWII. Some of the most horrific and brilliant doctors and scientists committed some the most outrageous atrocities against mankind. On paper, if you asked anyone, most of society would be disgusted by their actions. But when you boil it down to the finer details, you can excuse them by this thinking of the greater good. Did we not learn much from their discoveries? Did our country not then hire some of those same doctors to keep the studies going? But that’s not something most want to think about or are even aware of. The uglier side of things, swept under the rug and justified by the thinking of the greater good. We simply learned so much, right? I wonder how those poor souls felt being forced to give their lives, their comfort, their humility suffering for the sake of others. How many universities, governments, corporations dipped their hands into the pot of human experimentation, ‘for the greater good,’ before laws were formed to stop the overt practice on human life? Just research the topic and you’ll be surprised how common this was. The people experimented on didn’t have a choice in the matter. That’s an ugly truth that simply is.

It’s easy to rationalize and justify thinking that simply wouldn’t happen again, after all, didn’t those laws come into effect? In the 80’s. We’ve evolved from that kind of behavior, right? No. Tigers don’t change their striped, they simply camouflage themselves much better and push the idea of the greater good, dressing it up in a beautiful wrap and calling it something pretty. Critical thinking and open debate began slipping further and further away from the curriculum taught in schools and universities and group think began. A world wide social experiment with deep effects into the minds of the plugged in. The idea of a different viewpoint becoming an anger inducing division of minds and a black and white scenario with no room for individual thought and discussion. It is ‘the collective’ and the divergent.

Those who’ve become the sacrifice, awakening to the injustices that hide beneath the fabric of this collective thinking of the greater good and the finer details that are hidden even deeper within. It truly explains the immediate silencing and ostracizing of those outside the box. The unplugging from the collective.

The Next School Shooter

Several years ago, a mother in my state wrote an anonymous post about her child being the next school shooter. It took a post like that for a doctor in another state to reach out and help her child. Yet no change took place in Idaho. Our mental health system here is a broken wreck, we know it, they know it, but no one is doing anything about it. It’s been years, yet here we are with the same broken system. A young girl, a 6th grader became the next school shooter. Thankfully for her, no one died. I sit here wondering what help she will truly be given and what changes won’t take place because of it.

I sit here and wonder if my child will be next.

Did you know the state of Idaho does not have ONE anger management class or sessions for our youth? Not one, so they say. My child has actually reached out and asked for help with this anger that comes out of nowhere and rages out of control. He hates it, we hate it, but how do you control it? How do you stop it from unleashing in the first place? Doctors want to throw anti-psychotic after anti-psychotic at them but it does NOTHING to help the child. My child doesn’t do well on meds. Period. We’ve tried so many of there damn drugs but not one has helped. He lives with extreme over the top anxiety and panic attacks and nothing has touched it. It took YEARS to even try a fast acting anxiety med in the first place because they were too concerned with addiction than helping my child.

So my child suffered for so long without help that it’s become out of control and beyond where it needs to be due to lack of help in the beginning when we needed it most. Addiction is more concerning to them than the actual wellbeing of your child NOW. Off label meds are used more often than medications meant for the issue to begin with.

One of the biggest issues with long term drugs is that it can weeks to months to be effective. So they trial a med, fight off the side effects, only to have it be ineffective or cause more problems only to finally stop it and trial another, and another and another, to no avail. At some point the child will refuse meds. And then rage at the worthless system he finds himself under.

The state of Idaho has no real respite for older kids. I am just now learning of one on the east side of our state yet no one had mentioned it to me before. Why don’t we have one in the most populated area of our state? There are plenty of respite ideas for those with young kids but not a damn true respite for our older teens that benefit both the child and the parents. So the government contracted with the Hay’s house. A local shelter in Boise that takes kids. Apparently, paying good money from the government of Idaho to the Hay’s house to provide the needed respite for our kids in the system. Guess what? They denied my kid.

After taking weeks to even try and get someone to call me back and then go through the application process and set up a tour. I simply got a phone call telling me they don’t take kids with autism. They also don’t take kids with health issues even though my son doesn’t have any needed equipment or really any special care beyond, let him rest if he needs to and don’t require physical activity if he’s hurting. So why are they getting funds from the government, likely from us tax payers to provide a service, ON PAPER, that they are refusing to provide? It’s funny and ironic that the court order in my kids case simply says, “keep seeking respite…” Yup, we’ll keep seeking but never find.

And they wonder why kids finally explode. They wonder why suicide rates are high and ever climbing. They wonder why kids take their aggression out as a school shooter. I wonder what help the poor girl didn’t get and how long they battled the system trying to find it before she finally snapped. So what change did this incident bring about? Likely not a damn thing.

Respite for teens should provide a safe place for teens to have both enjoyment and a break from their families while providing a break to the parents as well. If one is suffering, the other will too. So if a kid goes to a place like Hay’s house and can’t even keep his phone or certain personal affects while there, please explain how that is not much different from detention? So even if he did get accepted, I can only imagine the anxiety in the back of my mind worrying about how frustrated my kid would be not having access to his basic personal affects while supposedly getting a break from the household… I honestly don’t think that would provide a real sense of relief, ie, respite. But it would be better than nothing…. until we can one day get real services and respite for our teens. If it’s not too late.

I’m so disgruntled by our system, our state, our health care. They are admittedly reactive and not preventative. But even their reactive measures are subpar, always shoving a square peg into a round hole and not getting results while continuing to try.

I would love to start a non profit and create a teen respite center in our state. A center with input from the very teens who would utilize it. But how do I do that? I’m just a disabled mom with ideas, a lack of education in that area, and very little energy to walk on my two legs. But we need it. We need it desperately as do thousands of other kids in our state who are suffering like my kid is just like the parents who struggle and need that break but are too afraid to ask for help or have asked but haven’t been heard. My ideas are endless on this program I’d like to create.

I’d also like to fix the broken juvenile justice/mental health system in our state. A REAL solution that would benefit our children that really does look a lot like common sense but our system is stagnant, apparently slow to change and how does one be the voice of change? I HAVE A SOLUTION!! But my voice travels out and fades away and doesn’t reach the ears of those who might actually be willing to make a difference. How can I be heard? How can I share my ideas that would help our kids in at least two areas where our state has failed? I need legs. I need someone to be those legs to reach the people necessary and then convince them to simply start by listening. Listen to my proposal and lets start working on solutions rather than wait till something even more drastic takes place that finally gets someone’s attention.

Will my kid be next?

Screaming to no avail

Voice hoarse, throat scratchy, dry and painful

Emotions flat yet raging inside

My mind a swirling mix of emotions and thoughts

My body clinging to life when I dream of it simply letting go

Screams of silence

Echoing in the chambers within

Lost in the confines of unstable uncertainty

Pulsating into the depths of despair

Always screaming, forever silent

With a thousand faces yet none aware

I Understand..

There are so many issues that divide our society. From my own personal journey, I can truly understand both sides of many issues. There really is no black or white but various shades of gray that make up our feelings and frustrations due to our experiences in life. Those stuck on either side of the black/white issue, simply have not experienced or walked in our shoes. They are blinded by their own journeys in life. That does not make them wrong, it makes them simply ignorant of the experiences of others and unable to see how others got to the place in which they view their side of things.

Broken

Lost.. drowning. Chewed up. Spit out. Unheard.

Not all voices sound the same.

If I tell you I’m struggling, imagine it 100 times worse. If I get denied the services I requested, I must not be screaming loud enough. Not all voices sound the same. Listen to the ones who speak quietly. They’re the ones who hold back. They’re the ones that put on a brave front and try to hold down the fort. The rocks. When they tell you they’re breaking, then listen to them. If they tell you they’re broken, they broke a long time ago and you just ignored their pleas.

Scattered pieces flittering away on the breeze.

Remnants battered, having been tossed to and fro.

Hands trembling, long held out, reaching without purchase.

Voice hoarse and whispered from the cries never heard.

Mind spiraling into darkness, shattered, broken.

Broken.

Would it be better if I crawled into a ball and cried,

showing my hopeless despair?

My emotions are flat on the outside but I’m screaming deep within.

Just as I ‘don’t look sick’ with an invisible illness

My emotions are far deeper and more broken than you can imagine.

My brain stuck, deep in the muck, frozen in a paralyzed state

But you can’t see or you refuse to hear the truth behind my shattered words

A desperate cry, a plea for help, in the only way in which I know

because otherwise it will be too late…

Too late for you to finally show.

Our Backwards System

Our system has it backwards in regards to helping people with a mental health crisis. Let’s be honest, oh wait!! You can’t! That’s one of the biggest hinderances to people receiving help. You absolutely can NOT be truly honest.

The stigma with mental health is another huge barrier to those who truly want to seek help. In addition, it can be illegal in the sense that one can actually be CHARGED with a crime rather than simply getting someone the help that they need. Please explain how charging someone ISN’T counterproductive in helping someone struggling with mental health issues. Sure, let’s add the criminal stigma to an already added pressure of the mental health stigma. Not to mention, the criminal aspect follows you for the rest of your life and counts towards an offense in your file. No pressure, stress, or harm caused there, right??

Shall we talk about the lack of services, providers, and understanding in our community. You need help, but sorry, it’s a years wait and the providers currently available are fresh out of high school with little to no experience. In addition, all MUST fit into the same neat little box and benefit from talk therapy. It’s one size fits all. And here’s some medication while we’re add it. Don’t worry about the horrible side effects or the fact that you don’t process the medication very well. Try the next one in the same category. And the next. And the next… But we won’t give you something for that severe anxiety that could help you now cause it could be addictive.. so we just won’t prescribe it. But try this off label med instead… it can take a couple months to be effective… if it works for you.

Honesty… When being honest nets you a jail cell or someone coming into your life to control it in ways that they think are being helpful but in actuality make things tremendously worse and cause more harm…. Haven’t they learned yet? Maybe they’re the ones with the mental health problem since they repeat the same mistakes over and over thinking they’ll net different results. Not everyone needs to have their lives controlled and items removed and meds stopped due to the thoughts in ones head. Isn’t ‘talk therapy’ one of the ways in which they say will help? Just don’t talk about that! Or that! Or that!

If a person truly wants to end their lives, they WILL find a way to do it. It doesn’t matter what you remove from their presence, they’ll find a way if determined enough. Yes, we all have those negative thoughts in a crisis of anger that, well, sound terrible, but does that mean the person is actually going to act on it? Shhhh… let’s not discuss that either. You just might be charged for your negative evil thoughts.

How about simply offering ACTUAL help in the FORM that someone needs? Wouldn’t you think that might actually reduce the amount of stress and overwhelming depression a person is suffering? No, let’s lock them up instead and add more work, hassle, embarrassment, stigma and, oh yeah, more STRESS to the equation. How about finding out what their needs truly are and why they are suffering and find solutions that help them actually function? We don’t really have programs available like this.

A lot of my own stress and anxiety is from being disabled and trying to take care of my children, one which battles his own health and mental health issues. But they make getting a caretaker nearly impossible! Hell, I had to pay for my own wheelchair since I can walk to the bathroom in my own home. We have tools to help but we won’t allow you to use them until you’re so messed up you have no choice otherwise. And respite? A glorified babysitter that gets paid to sit there and make sure your kid isn’t causing harm. How about programs that actually allow them to do something THEY enjoy for once to actually reset and take a break beyond experiencing the same day in and day out that led to their need of respite in the first place. And yes, kids need respite too. Or another option is a children’s home type environment where you’re restricted on your rights and creature comforts which just simply adds to their anxiety and removes items they use as supports, such as cell phones. That doesn’t help the child, it just makes them feel locked up.

How do we fix this broken system?