Domestic terrorism?

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Yesterday, I was discriminated against because of one of my disabilities. The acts of one individual and by extension, one agency, caused me to seriously think about the state of our rights here in America. What happened yesterday amounted to a unautorized search under Constitutional law. But, because it was conducted under the auspices of “security,” it was perfectly legal.

I watched literally hundreds of people shuffle through the TSA checkpoint yesterday. No questions asked, they just shuffled along dropping their clothes and shoes into bins to be x-rayed. They consented to pat downs and partial strip searches because TSA asked them to comply. Americans are so accustomed to the invasive practices of TSA that they don’t even question the legality of what’s happening in the name of security.

I for one am outraged. There was no justification for what happened to me yesterday. I requested that a vial of insulin not be x-rayed as that process ionizes the medication and renders it useless. The TSA agent told me I was the first person to request this. The TSA then proceeds to rifle through my belongings. I was threatened with security and being removed from the airport at least six times.

In an attempt to figure out what had triggered this event, I asked the agent in charge why she insisted on a full search procedure. I was told it was because their policy dictated it. I also learned she felt that working for TSA for 8 years and having a degree in Criminal Justice made her somehow better than me. Her chiding tone confirmed that she no longer saw me as an American citizen just trying to get home. No, I was an inconvenience to be handled.

The agent insisted she was just keeping everyone safe. I, for one, did not feel safe. Honestly, I don’t feel any safer under TSA than I did 13 years ago. This agent threatened to force me out of the airport with no recourse. It was truly comply or else. I asked how she was making things safe and was told she didn’t need to explain herself. TSA has become an agency that answers to no one. They hide behind policy and procedure. There is no accountability. There is almost no respect for the people they are supposedly helping to feel safe.

Since the TSA has failed to do anything in the way of preventing terrorism, what is their true mission? They came claim that by their existence, they are a deterrent. Yet, aside from confiscating millions of gallons of wine, water and baby formula there is nothing to show for their efforts. Tons of metal products including scissors, knitting needles and pocket knives have been seized under the guise of protecting the public. Millions of people have been harassed, assaulted, ejected and threatened under the guise of keeping the traveling public safe. Enough is enough.

Looking in from my place, the agency is nothing but a group of domestic terrorists. They have implemented policy that discriminates and degrades to the point of instilling fear. That is terrorism.

It’s time to realize that bit by bit we have lost our Constitutionally guaranteed rights. I’m not talking the big, controversial rights. It’s the little drops of water that have worn away the touchstone of democracy. It’s the quiet stealth of the government peering into the windows of our lives. If you’re okay with peeping toms, than you should be comfortable with the way our government has snuck into every corner. I’m not okay with peeping toms. I’m standing at this point and loudly declaring that enough is enough.

#TSA  #standupnow

Wings

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And when you finally fly away
I’ll be hoping that I served you well
For all the wisdom of a lifetime
No one can ever tell

But whatever road you choose
I’m right behind you, win or lose
Forever Young, Forever Young~ Rod Stweart

 

Tomorrow, my oldest daughter turns 21. A magical, mystical age where although she will be an adult for all intents and purposes, she’s still my little girl. This is the baby that turned my world upside down. I was a young mother, 24 years old. I was also recently married (less than three years), recently relocated from West Coast to East Coast, hundreds of miles from family and in a culture I was still trying to understand (military).

I was warned that I would be overprotective and quite possibly overbearing with my firstborn. And I was. She would tell you I still am.

 

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Fortunately for her, I outgrew much of that as she gained siblings. My daughter blazed trails every place she went. She was reading to her siblings and then watching over them at school. Her sense of justice developed early and she stood up at every chance. Watching her grow up was fun and truly joyful.

Tomorrow, she will become a legal adult. She will travel the world. Her thirst for knowledge will lead her to successes we can only imagine. Her determination to do the right thing may rock a few boats, but I know she sleeps well at night knowing she has done the best she could to be true to herself.

Here’s to you Beanie Baby…happy birthday and may all your dreams come true.

 

 

 

 

Dear “Autism Parents,” We Don’t Want To Be Cured

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There’s a worrying trend among parents and carers of autistic children: trying to cure autism. Be it through training autistic children like dogs, sending them to special schools to be “controlled,” by donating money to organisations like Autism Speaks (widely held to be a hate group by autistic adults) in the hopes that their research can find a “cure” for autism, or even through drinking bleach (seriously)- a large number of “autism parents” want to see the end of autism. If you’re unfamiliar with the autistic community then you may ask why this is a problem: what’s wrong with wanting to cure autism?

Everything. Everything is wrong with wanting to cure autism.

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Autism is not a disease, it’s not a sickness, and the vast majority of autistic people do not want to be “cured.” Autism is a huge part of us, and removing it would radically change…

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Atlas Shrugged

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If you’ve ever read any of Ayn Rand’s writing, you know the focus is on a dystopian future filled with philosophical implications. I originally read her works over 30 years ago as a teenager. Then, they seemed to be a rallying cry for my rebellious self to shirk tradition and become a “forward thinker.” Now, her writings seem more predictive in that many of the situations presented in her books seem to have come true.

Atlas is a Titan from Greek mythology who crossed the Gods and must now hold the sky up for eternity. Many people believe Atlas was charged with holding up the Earth. Either way, the implication is that a sole being is responsible for maintaining the balance. That is a mighty burden.

Until recently, I felt I had found a kindred spirit in Atlas. I had crossed the powers that be and my punishment was to forever battle the weight of the world. For 4 years now, I’ve been fighting to find out what was making me so ill. My doctors fought me literally every step of the way. I would research a possibility and then be told that there was no way that could be my problem. As this process repeated itself, I became very depressed. I felt like I was the only one who was interested in discovering what was happening to me.

Last year, I was able to convince one of my doctors to send me to The Mayo Clinic. He did it reluctantly and told me that the only reason he was writing the referral was to convince me that my illness was psychsomatic. When all was said and done, I received two diagnoses. Neither one could be “faked” or deemed psychosomatic. From November until January, my doctors continued to deny I was physically ill. They refused to provide treatment for these illnesses, claiming that I was making up my symptoms. At the end of January, a decision was made by the medical group to fire me as a patient. They claimed I used too many resources and filed too many complaints about my care.

I’m sure the medical group felt they were punishing me by forcing me out of their system. In the last 6 weeks, I’ve discovered that the medical group actually did me a favor. And today, I shrugged.

I now have providers who see me as a person and are at least professionally concerned about my well being. Today, I had a provider caution me about corporate policies and what I needed to do to ensure that my medical needs were being met without crossing corporate decision makers. I have been reassured that I have physiological issues that are severe, but manageable. I was told, very compassionately, that this is my life now. No more tests, no more medication trials, no more feeling like a guinea pig. We’ll follow new developments and talk about if they are worth trying for me. I was given permission to live again.

This. Is. My. Life. I don’t consider that a death sentence. It’s a challenge. Live fully. Love unconditionally. Enjoy every sunrise and sunset. Stop worrying about my medical journey. “We’ve” got your back. And with that conversation, I realized that I was going to be okay. No promises of smooth travels, but it will be okay. And I can live with that.

“Home” by Phillip Phillips

Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave (wave) is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
You get lost, you can always be found

Just know you’re not alone
Cause I’m gonna make this place your home….

One Way Streets

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There is some self-interest behind every friendship. There is no friendship without self-interests. This is a bitter truth.~ Chanakya

Lately I find myself re-evaluation my priorities. My health issues are happening more frequently and with greater intensity. While not life-threatening, it is annoying. This situation is also making it harder for me to sustain relationships that are one-way streets.

We’ve all been there. Friends of convenience that you share a common interest or two for a while. Friends that seem to pass through for a while. Relationships that never seem to really take off. Relationships that become forced over time. All in all, these relationships are very taxing for me.

I count myself lucky that many people have passed through my life. Each relationship has enriched me. They helped me see the greater diversity that makes up my life. As they fade and disappear, I mull over what brought us together in the first place. The reasons are as different as the relationships. Some were because our children were in the same activity. Some were because we had similar life situations. Others were through professional organizations or jobs. Many were because of a common interest or two. And, when circumstances changed, we parted quietly and moved on to the next stage of life.

Recently, I realized that many of my relationships were one-way streets. I was working very hard to make the friendships happen. I would schedule “dates” and be the one who initiated contact. The more I examined things, the more I came to understand that reciprocity was missing. In one case, I learned that a relationship was based not on mutual respect, but on what I could do for an organization. In another I looked backwards and realized a person didn’t make time for me and repeatedly broke “dates” because they didn’t feel like going out. Then, a few days later, I found out they had received a “better offer” and had gone out with someone else.

It hurt. I know I’ve lost many friends because of my illness. Some were “fair weather” friends who just decided I was too much work. Others didn’t know what to do, so they did nothing. A third group starting telling me they just didn’t want to hurt my feelings. I even had a group that was solely based on what I could do for them and they had no intention of reciprocating at all. At first, I missed these people and mourned the loss of the life I had. And then, I realized that my garden was blooming brighter and some of the low-lying flowers were now receiving sunlight. Those flowers have become the garden I cherish and look forward to spend time in.

There is still some bitterness, but mostly directed toward myself because I didn’t weed my garden sooner. I know that I am the only one who can change myself. Expecting others to change for me seems to only lead to heartache. I had to grasp the concept of my own self worth before I could see which parts of my garden could be weeded and which parts needed nurturing.

The bottom line is that even friendships run their course over time. There is no success to be found in forcing a one way relationship. While each friendship may develop because of self-interest, if it never moves beyond that initial phase it probably isn’t worth expending the time and energy required to keep it alive.

Advocate

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Earlier this week, I was asked why I advocate. The discussion was both about my own advocacy in pursuit of healthcare and the advocacy I do for people affected by disabilities. As I tried to explain that being a “sheeple” was not in my nature, the following two pieces came to mind.

“Once, on ancient Earth, there was a human boy walking along a beach. There had just been a storm, and starfish had been scattered along the sands. The boy knew the fish would die, so he began to fling the fish to the sea. But every time he threw a starfish, another would wash ashore. “An old Earth man happened along and saw what the child was doing. He called out, ‘Boy, what are you doing?’ ” ‘Saving the starfish!’ replied the boy. ” ‘But your attempts are useless, child! Every time you save one, another one returns, often the same one! You can’t save them all, so why bother trying? Why does it matter, anyway?’ called the old man. “The boy thought about this for a while, a starfish in his hand; he answered, “Well, it matters to this one.” And then he flung the starfish into the welcoming sea.”
― Loren Eiseley, The Star Thrower

This reflects my own struggle to get doctors and healthcare professionals to understand that I am deserving of their time. I have recently been feeling that my health is only a priority to me. My last set of physicians dismissed me while I was medically unstable because I “used too many resources.” Fortunately, I believe I am now with a group that is interested in my care. The last two weeks, I been able to establish care with providers who have taken the time to hear my story. They have not dismissed my illnesses as psychosomatic. I am now receiving the care that should have been happening for the last two years.

“First they came for the communists, and I did not speak out—
because I was not a communist;
Then they came for the socialists, and I did not speak out—
because I was not a socialist;
Then they came for the trade unionists, and I did not speak out—
because I was not a trade unionist;
Then they came for the Jews, and I did not speak out—
because I was not a Jew;
Then they came for me—
and there was no one left to speak out for me.”

― Martin Niemöller

I have considered this piece as one of the most important lessons that came out of World War II and the Holocaust. It projects the effects of apathy on the human race. For me, it gives the impetus to advocate for those whose voices may not be strong.

Both pieces highlight the importance of doing something…whether for yourself or someone else. When you turn away from others, you are denying yourself the opportunity to lift someone else up. And there is really nothing quite like the feeling of making a difference.

Brewing Storms

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Disciplining yourself to do what you know is right and important, although difficult, is the highroad to pride, self-esteem, and personal satisfaction.~ Margaret Thatcher

This past week has been mixed emotionally. I’m finding more people who are struggling with the healthcare facility I am no longer allowed to use. These people were treated badly…in some cases to the point where they left the facility in worse condition than when they started. What’s going on is at a minimum morally wrong. It could even be perceived as malpractice in some cases. And now I know that this facility is planning to abandon even more patients under the guise of providing those patients “better” care by “allowing” them to choose private providers. Those quotes are because the added expense of the co-pays will bankrupt many families.

So, what is right and important? As I explained to someone last week, raising awareness is the key. Bringing attention to the situation is not easy. I know that eventually someone will come across these writings or read my story elsewhere and it will make my life difficult because doctors can be a pretentious lot. I was told last week that my self-awareness about my disease processes actually works against me because doctors don’t like patients who have more knowledge than they do. I find it truly sad that there has been so much emphasis put on “partnering” with patients and now I know that it was never an even partnership. It was always going to be a very lopsided relationship with my opinion having very little value.

Pride is what inhibits growth. It is almost impossible to grow when you think you’ve already reached your peak. Telling people that their knowledge is invalid because they lack a medical degree is asinine. With all the information available at our fingertips, people are able to research their diagnosis and bring that knowledge to their doctors. I’m not advocating trading “Dr. Google” for professional training and knowledge. But, I have more time to focus on my conditions than my doctors do. Why shouldn’t I ask questions?

I’m not being prideful in my quest for raising awareness. I will admit that I am hoping for some personal satisfaction when I’m done. No one should be allowed to degrade people in the name of “helping” them. As this country moves toward universal healthcare, we need to watch out for each other. We need to call out the practitioners who choose quantity over quality. There is no shame in sharing knowledge and asking questions.

Who Are You 2

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I have no issues with my identity.~ Rashida Jones

In the last 24 hours, I’ve had reason to contemplate “identity” from various points of view. If you’re going to throw yourself to the social media wolves, you have to expect that kind of thing to happen. My last entry generated some words about how I define myself solely as a medical patient. Those words were not meant kindly, but were rather an attempt to censure me. It seems I touched a nerve.

For the record, my life does revolve around medical care. This is primarily due to the fact that without medical care, well, my life would be very different. I go from one appointment to the next, one treatment to the next and one more set of challenges shows up at least weekly.

I do not consider my illnesses to be my identity. That would be short-changing all the other aspects of my life; wife, mother, sister, teacher, mentor and community volunteer. While illness is certainly part of me, it’s not all of me.

ci2

It Wasn’t Personal Until…

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If you don’t like something, change it. If you can’t change it, change your attitude.~ Maya Angelou

I’m the kind of person that believes in live and let live. First do no harm is one of my favorite statements about life in general. I don’t take many things personally because we’re all human beings who make mistakes. But, at some point, you realize that someone has risen to such a level of incompetence as to cause harm. At that point, I move into “protect myself” mode.

Let me start by saying I rarely set out to anger someone or cause drama with supervisors. I honestly believe that most people are hard-working individuals who are trying to perform well at their jobs. Sure, every now and then a person slacks off. I’m even guilty of that in my own life.

I’m medically complicated. It’s that simple. The medical community I have been interacting with is in way over their heads. Three weeks or so ago, there was a decision made that I was a “difficult” patient. You can interpret “difficult” however you desire. But, my main doctor flat-out said that I complain too much and am using up too many resources as they attempt to resolve my complaints. I found out about this decision two weeks ago…during a medical emergency when the ER doctor walked into my room and asked me which hospital I wanted to be transferred to because there was a “Do Not Admit” note on my record at that facility. Did I mention this facility is considered to be a major medical center?

If you’ve been following my blog since August, you’ve already read some of my writings about the medical community. I’ve had great interactions with a fairly significant group of people. People I could probably be friends with if it weren’t for the situation. Most medical people seem to be more or less normal and probably live “normal” lives outside of work. There just seems to be two forces at work in the medical community, neither of which bodes well for consumers.

The first is organizational inertia. This happens when the processes just stop being functional. It’s like when I saw a specialist two weeks ago who prescribed a certain medication. I went to have the prescription filled at a retail pharmacy only to discover my primary doctor had to approve it. So I went to pharmacy #2 which just happens to be a military pharmacy, handed over the prescription and walked out the door 30 minutes later. No questions, no authorizations. I can’t figure out why the process exists. Organizational inertia also occurs when people start pointing fingers at each other and acting on rumors. Had the medical community I am involved with acted reasonably along the way, there probably wouldn’t have been a panic moment when my primary doctor realized I had not been told that I was being dismissed as a patient.

The second force is what I like to call “fiefdoms.” Fiefdoms happen when a person decides they hold all the cards and attempt to micromanage situations. They stop communicating with other people who should be involved in decisions and act solely to wield imaginary power. You can find fiefdoms in every possible industry, but in the medical field fiefdoms can be deadly. Imagine a doctor who thinks they are the expert on a medical condition and decides to ignore other opinions from their peers. Or a doctor who no longer listens to a patient because the doctor has decided what is wrong with the patient and refuses to entertain any other diagnosis. Now you get the picture of how this is a problem for patients. I’m not saying that a cold isn’t a cold. But, if it lasts for 10 weeks, perhaps a bit more investigating should be conducted.

So, to all the people who I’ve angered, stepped on or walked over in the last two weeks…I’m not even going to apologize. You can blame lack of resources, being bound by policy, overworked, underpaid or whatever. Don’t take it personally, but those things are not my problem. YOU are my problem because you refuse to see the impact your decisions have on ME. And when your feathers get ruffled and your supervisor starts looking closer at your actions, you have no one to blame but yourself. Don’t even try to blame me for being “difficult.” If you see something is not working, try to change it. Don’t succumb to inertia. Don’t cut yourself out of the loop and think there will be no consequences. Take responsibility for improvement. Change can be painful, but not changing is really a luxury none of us can afford.