I wish I could speak this eloquently!
Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism.
I wish I could speak this eloquently!
Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism.
Do not go where the path may lead, go instead where there is no path and leave a trail.~ Ralph Waldo Emerson
I really wish you could understand that the human body is an ecosystem. Everything that happens affects every part of the human body. It’s not as simple as fix this and everything will be fine. Your fixes have frequently created more problems in my ecosystem. And, by the way, each ecosystem is unique and responds differently than any other ecosystem out there.
If only you could pull all the information I have about my ecosystem into your head and see what my life really looks like. Maybe you would stop guessing so much. Perhaps you could admit that you don’t understand and need to study things some more. On a shooting star, I wish you’d stop telling me that all my problems are psychosomatic. I have consented to your tests, hospital stays, blood draws and office visits so you could have data you knew how to quantify and draw conclusions from. Now all I want is for you to follow through and do your job.
That’s right. Do. Your. Job. Use your powers of inquiry that got you into your chosen profession. Stop limiting yourself to the narrow box that has come to define your idea of disease. It’s rumored that we use less than 20% of our brain’s capacity. Imagine what you could do by committing even 1% more to solving the mysteries of my life.
Stop complaining about me wanting answers. Stop denying me basic medical care because you don’t believe I have any illnesses. Stop reading just one line of my chart and spend a few minutes seeing where I’ve been to help me get to where I’m going. Stop treating me like I’m an idiot and have no idea. Stop trying to use terminology you think I won’t understand in an effort to “satisfy” my line of questioning. Just STOP.
Before you start griping about me, think about how you would feel being on the receiving end of your statements. Think about what it’s like to be told you are purposefully making yourself sick. Think about the impact your words will have on me. I came to you because I wanted help and hopefully answers. Not because my self-esteem needed another hit.
Act. Tell me your theories. Give me space to tell you my experience, which may answer more questions that you have. Apply your knowledge and realize that my ecosystem is rather precariously balanced. Don’t just toss out random lines of thought. Do your research and be ready to DISCUSS, not tell, the information. You see, I’m not quite the idiot you make me out to be. Maybe that’s what knocked you off course and made you think it’s all in my head. Just a hint…while I may not have a medical degree, I’ve been sick long enough to know my own symptoms AND to recognize where you are blowing smoke up an orifice.
The Patient You Blew Off Today
I’ve been undercover most of my life. Now I’m “out” I can read pieces like this and vigorously nod my head in agreement.
Undercover Autistic: on disclosing autism in the (academic) workplace.
Attitude is a little thing that makes a big difference.~ Winston Churchill
I had another doctor’s appointment today. Another specialist who is referring me to yet another specialist. Some days it seems like an endless road of cobblestones with the all too frequent speed bumps. I know I’m not alone on this journey. Many of my social media contacts seem to have similar paths. I read their updates and laugh/cry with them. I’ve met many of them in person now and am constantly amazed at how much people cope with on a daily basis.
Today my new specialist asked me how I could be so clinical and calm when describing my health. I must have looked weary as well since she asked me how many times I had repeated my history. Truth be known, I’ve lost count. I’ve been ill since 2000 and “chronically” ill since 2010. My life changed. I can’t do some things anymore. I’ve discovered new pursuits to replace the ones I’ve had to cross off. My coping mechanisms are wide in scope since I have so many things to deal with. Yes, I am clinical. It’s actually one of my ways of dealing with the speed bumps.
What I find interesting is how different people look at their circumstances. I have one friend whose battle cry is “Quality over Quantity!” This friend is determined to live a full life, however long it is. I read their updates and find myself hoping it’s a long one. The sheer will to keep getting up day after day, never knowing how beat down you’ll be at the end of the day, is a testament to the strength of the human spirit.
And I know other people who see what I envision as small challenges melt into a hot mess. Their response to a stubbed toe is worthy of an Oscar for Best Acting. Yes, I find myself chuckling and restraining myself from posting something sarcastic. I keep telling myself that I haven’t walked in their shoes and shouldn’t judge. But, really. I have a hard time sympathizing with you over a cold that lasts THREE WHOLE DAYS when I have weeks where I struggle to stay out of the hospital.
Then there are my “in between” friends. They triumph over challenges and quietly mention their latest success. They write about things that bug them and a few days later post about how it’s amazing the way things work out. I read about their kids and family members and cheer them on. Again, seeing the human spirit in action is an amazing thing.
So what am I talking about in this blog post? Attitude. There’s a whole lot of “not fun” in this world. there’s also a lot of great opportunities. People who get hung up on the “not fun” parts absorb that attitude and, in a way, make their own lives “not fun.” I used to be one of those people. There was a time when I would have stayed in bed all day because of a cold. I’d bemoan my stuffed up nose and feather-filled head. Even in the early years of being ill, I’d do an “oh poor me” schtick for anyone who would listen.
Now, I see things differently. I weigh whether the level of “not fun” is worth doing an activity. I speak up and tell people what activities I can do without experiencing too much “not fun” as a consequence. Ever so slowly, my friends are picking up on my cues. More people are becoming less fearful about including me in activities. I like to think it’s because I’ve put them at ease. That maybe they have learned that while I’m ill, I’m still a person who needs companionship. I can still do many things. Sometimes it’s mind over body if I really want to do something.
It comes down to attitude. We have to make peace with our past, cherish our todays and celebrate our tomorrows. That’s what I told the specialist today. The look on her face was one of astonishment. And we proceeded to map our the next plan of action to deal with the latest issue. I encourage you to continue moving forward, head held high, facing the challenges with grace and dignity. It’s your call.
She had been doing this for some time when a man approached her and said, “Little girl, why are you doing this? Look at this beach! You can’t save all these starfish. You can’t begin to make a difference!”
The girl seemed crushed, suddenly deflated. But after a few moments, she bent down, picked up another starfish, and hurled it as far as she could into the ocean. Then she looked up at the man and replied, “Well, I made a difference to that one!”
I’m just going to throw this one out there. Mental health is just as important as physical health. Study after study shows that people who take care of all aspects of their health live longer, more fulfilling lives. Like many health related things, however, people don’t want to talk about it.
So I’m going to talk and hope at least one person listens. In the last two months, several people I care about have become so disillusioned with life that they decided suicide was the only way out. While I’m not an expert, I’ve been there myself and walked with many others who have felt this way. I’m not going to sugarcoat things here with the hope that at least one person understands what I’m saying.
At the time a person reaches this point, the sense of reason is gone. There is literally nothing visible to the individual aside from release. It’s like tunnel vision or wearing blinders. Distraction is almost impossible because the fixation on relief is so strong. If someone is well and truly only focused on the relief, there is not much anyone can do to stop the inevitable conclusion. You can try to talk someone off the ledge, but a truly determined individual will not hear you.
Which brings me to my next point. We’re social beings. If you start to see a friend withdraw, ask why. This is the time your words may be heard. Waiting until the cries for help become so obvious they can’t be ignored is too long. Engage your friends on a regular basis. Check on each other and listen instead of thinking about your next activity. Just imagine if we all paid as much attention to the people around us as we do to celebrities. Everyone’s well-being would improve.
The flip side of this is to recognize when you are over your head. Some people need more help than others. While a chat or a hug may help someone regain a wider view, it’s just not possible for everyone to bounce back as easily. The airline advisory to put your own mask on first is so true. If you become fixated on helping someone who doesn’t want help, you can go down as well. Especially if the person is ultimately successful despite your efforts.
Ironically, mental health professionals are some of the lowest paid individuals and yet they carry such a huge responsibility. My insurance only reimburses up to about 1/3 of what they pay my physicians. As my news feed becomes plugged up with stories about how mental illness is to blame for most shootings, I just think about how great it would be if we not only had the professionals, but also the respect for the profession. Money isn’t everything, but everyone has bills and it would be nice if the people we hope will step up could be compensated accordingly.
Many years ago a movie titled “Crocodile Dundee” screened across America. The title character is from Australia and ends up in America. He has a conversation about life’s troubles with the female lead who mentions her therapist. And the words he spoke “don’t you talk to your mates (friends)?” still reverberates in my mind. We have all become so busy that we have forgotten about our mates. In this crazy, self-absorbed society we have left our friends to fend for themselves. And that is just not cool.
For those of you who contemplate relief on a regular basis, I urge you to seek out professional help now. For those of you who think, but don’t act, reach out. There are many avenues out there available to you. Sometimes you just need to see around the next corner. For those of you who think you’re immune, I ask you to share your strength. Engage with your friends and community. Help others see the sunny side of life.
We’re all in this together. Don’t place blame. Shaming people because you think they’re weak is not okay either. You don’t know what is up next in your life. Or how well you will cope with the next curveball life throws you. It’s okay to ask for help. It’s okay to offer help. Don’t shy away from someone because they have hit a bump. You may be the one who makes a difference.
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.
In the United States, the only place you’ll see a live zebra is in a zoo. I’m sure there are exceptions, but we don’t have roaming herds of zebras in the streets. Which means you have to go out of your daily routine to see one. Which, by definition, makes seeing one an unusual occurence.
In the medical field, physicians are taught that when they hear hoofbeats, think horses not zebras. Meaning that most illnesses are common enough that physicians see them all the time, like horses in the United States. Every once in a while, a person shows up with something that isn’t a horse. These diseases are referred to as “zebras” because while uncommon, they have been identified. Zebra illnesses are absolutely no fun. Most don’t have enough research dollars attached to them to make studies viable. So, people with zebras tend to stumble along, treating symptoms as they appear and hoping for the best.
Then there are people like me. I’m coining the term “orphan zebra” here. Not only are some of my illnesses zebras, they are so rare that there are fewer that 300 confirmed cases worldwide. We’re orphans in the medical field because doctors only read about these illnesses. Our illnesses are often mistaken for horses because the doctor has never even read about the illness. And as far as treatment goes, unless some fabulously rich individual happens to take pity on us, we muddle through because no one wants to research something that isn’t funded.
I think the worst part about being an orphan zebra is that no one believes these illnesses exist. There is very little research and you have to dig through many medical journals to find it. Doctors are uncomfortable with the findings because they’re not “normal” and thus out of anyone’s area of expertise. You can treat the symptoms, but there is no guarantee the standard treatment will work, because the treatments were developed with horses in mind.
The second worst thing for me is knowing exactly what is wrong and not being able to do anything about it. I have the diagnosis. Now what? Well, nothing. I can’t travel to an exotic location where the one person who is researching these illnesses lives. There are no clinical trials. It’s all hit or miss, mostly miss unfortunately.
The third thing that bothers me is that people with similar symptoms suddenly believe they have the orphan zebra. I’m not naming things in this post because I’m tired of others assuming they have these orphan zebra illnesses. This is a personal pet peeve. In some social media groups that focus on chronic illnesses, it’s called “the dyingist game” and people post to one-up each other on who is the sickest. This kind of behavior detracts from the seriousness of the illness.
I will give one example. Our local news outlets have spread the word that this year’s flu is deadly. In my home state, 23 people have died from it while over 25,000 cases have been reported. I was in a local emergency room last Tuesday. There were people there who had been waiting over 4 hours to be seen. Many were school aged children who were running laps around the waiting area. As I watched them be called back and sent out 15 minutes later, bottle of acetaminophen in hand, I wondered why they didn’t just stay home and let the bug run it’s course. Then I realized the media had turned a horse, the flu, into a zebra.
In the meantime, my zebras were running rampant in my body to the point where I was about to pass out. After 2 hours, I was placed into an ER room. I swear those zebras trampled my innards, worked up a sweat that translated into a fever for me and burned up all my glucose causing a diabetic emergency. A bottle of pain reliever was not going to fix this.
My piece of wisdom for today…don’t go looking for zebras. As the United States moves towards universal healthcare, accept that you may contract some horses and take responsibility for recognizing that and caring for yourself. Going to the hospital is not “cool.” Resources are going to get scarcer and you’ll be more comfortable at home anyway. Should a zebra come knocking, make sure you do seek appropriate care and learn all you can about how to care for your zebra. And should your genetic fate include an orphan zebra, well, learn as much as you can and keep an open mind.
The only source of knowledge is experience.~ Albert Einstein
Oh, this quote could take me down so many roads…from watching new parents struggle with the new normal in their lives, hearing stories of success from the families I help support in the education system, guiding my own children as they journey to adulthood. To me knowledge is hard-won through experience. You can read books (an experience), become involved in something (more experience) or try something new (experience). It’s all in the perspective.
I wonder sometimes if the quality of the experience affects the value of the knowledge. If my school teacher (read college professor) hasn’t worked directly with elementary age students in over 10 years, how valuable is their experience today? Does the new influx of information add or detract from previously learned knowledge? That’s probably too philosophical and abstract, which means it’s best filed under keep it in my head for now.
Tomorrow, I will present my knowledge, gained through research and personal experience, to an individual who may or may not be receptive to the information. I’m no professional in the field I’m presenting and the individual is. My task is to make this information palatable so the professional can see and think from my perspective. Am I the only one who plans out these things?
I doubt it. When the message is near and dear, we all think about the best way to convince others we have at least part of the answer. For some, it’s a matter of pride. For others it’s seriously questioning the established “chain of command.” You need look no further than your news casts or social media platforms to see this playing out on an hourly basis right now.
I’m just hoping that if I leave big enough breadcrumbs, this professional will follow the trail and consider what I’m saying. I’m hoping the individual sets aside the need to be right and recognizes that I am the most invested person in the process and therefore the most devoted to the outcome. I’m hoping the individual’s prejudices can be set aside long enough for my message to be heard. That’s a lot of ifs and hopes to expect.
The next time you find yourself trying to present information, think about your audience. What can you do to make sure your voice is heard? Take the time to prepare. This applies to school, work, recreational activities and social lives. Give some leeway in your interpretations to provide an opportunity for the other person to be heard. You can be strong in your convictions, but opening yourself to new ideas can help you understand that there is a wide spectrum of ideas and some just might make sense.
guid·ance (n.) 1. The act or process of guiding. 2. Counseling, such as that provided for students seeking advice about vocational and educational matters. 3. Any of various processes for guiding the path of a vehicle or missile, by means of built-in equipment.
I have discovered a new meaning for the word guidance. It apparently can also be defined as “using policy to shirk responsibility.” As in “the guidance says that can’t be done.” Rather than think independently, it becomes easier to follow guidance. The end result is a group of people who rely solely on the opinion of others to make decisions.
In some ways, this form of guidance is very similar to definition 3 above. The trajectory of my life is being guided by the built-in mentality that allows people to blame their lack of interest on “guidance.” If this sounds bitter, it’s because the more I look at things, the more I realize how often policy dictates decision. Gone are the days of thinkers such as Jefferson. In their place, we have groups whose information and conclusions seem valid enough that another larger group believes those ideas.
You can find this group thinking across all aspects of your life, from the workplace to heath care to current politics. Ever wonder why you can’t wear sneakers to work? Would it impact productivity? Probably not. But along the way, someone decided sneakers were unprofessional and no one has challenged it so, no sneakers. Have you wondered why you have to go to physical therapy before your doctor will consider that you really hurt something? A flow chart has determined your fate. Politics…well, that’s self-explanatory.
There’s an old saying that two heads are better than one. If it stopped at 2 heads, we might have some semblance of balance. Add a 3rd, 4th or more and things start to become imbalanced. In trying to reach consensus, the individual is lost. Policy becomes more important than people.
That is my rallying cry for today. I am a person, not policy. All the flow charts in the world can’t contain my humanity. I appreciate the concept of guidance, but I do not believe that it should ever replace the power of individual thought.