I wish I could speak this eloquently!
Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism.
Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism
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Tag Archives: Patience
Dear Doctor…
Do not go where the path may lead, go instead where there is no path and leave a trail.~ Ralph Waldo Emerson
Dear Doctor,
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.
Sincerely,
The Patient You Blew Off Today
It Wasn’t Personal Until…
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.
Orphan Zebra
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.
Clann
Family means no one gets left behind or forgotten.~ David Ogden Stiers
Over the last few days, I’ve seen multiple stories in the media about families. A woman who has 15 kids now is demanding that someone, not her, take responsibility for them. A 5-year-old girl has been missing for two years and her family no longer mourns her. A young man was killed in a drive by shooting a year ago and his mother is still passing out flyers asking for anyone with information to come forward. A teenaged mother threw her newborn over a fence so her parents wouldn’t find out she had been pregnant. All this is swirling around my head, begging me to ask how did we as a community reach this crazy place?
I admit I was raised under rather traditional rules. My parents are immigrants (hence the Gaelic title of this entry) and raised us how they were raised. Even in the 70s, my childhood friends would comment on how weird we were. We ate dinner together almost every night. My parents were present at our activities. They were involved in our schools and communities. Discipline came swift and hard to violations of the house rules. My friends laughed at my curfews, since they had none. They laughed at the boundaries of my life, daring me to bike further from home in defiance of the rules. I remember believing that my mother was omniscient as I was always called out on those transgressions. Turns out she just knew someone in every part of my life who would call her and tell her I was misbehaving.
I look at all the “family” things that make the news and wonder how anyone could stop missing their child. How anyone could just give up. How anyone could abandon a child. The families that keep fighting are becoming less noticeable. The only place I saw news of Joe Bell being mowed over in Utah while on his walk against bullying was on social media. The family of a New York teen with Autism is raising money to offer a reward for the safe return of their son who wandered away from school almost two weeks ago, also on social media. A Florida family is trying to get the word out about concussions because their child died after a football collision, again on social media. Broadcast media is still going with “if it bleeds, it leads” and has no interest in sharing these stories.
I don’t think I will ever understand parents who have such callous disregard for their children. I hope my three children know that the village that raised them will welcome them back anytime. I’m pleased that they already seek to find the good in people and to work towards improving their communities. Because that’s what it’s about. Accepting responsibility, building community, strengthening relationships and knowing that your family has your back.
And just in case you missed it in previous posts, family is not defined by blood. Surely that is one of the first things most of us experience as children. But as we grow older, family becomes those we choose to allow into our lives. If each of us refused to leave others behind, I think humanity just might have a chance.
Pay It Forward
Patience is necessary, and one cannot reap immediately where one has sown.~ Soren Kierkegaard
I was recently part of a discussion about parenting children with special needs. One person basically came right out and said there was no way I could understand a child with Autism because I’m “just” a mother. Another commented that because my children aren’t “severely” disabled, I can’t understand what other parents are going through. I’ve already written about how I feel when people start playing the disability olympics. I struggle so much with wanting to tell people that every day is a new day and then being shot down as overly optimistic.
I am optimistic when it comes to children. They represent new opportunities for everyone. Just as each adult brings a new thread to the tapestry of life, so do our children. If you think about it, we were all children once. We learned, struggled and overcame obstacles. We became reflections of our upbringings.
It is those upbringings that parents are responsible for. It’s tough being a parent. Despite all the parenting advice out there, each kid is unique and doesn’t fit “perfectly.” I’ve had friends whose babies started sleeping through the night within weeks of birth. Other parents have had to cope with colic for over a year. Consequently, we’ve all learned to adapt to our children’s needs in order to keep our lives running more or less smoothly.
My knowledge of children with disabilities comes from both raising Autistic children, working with children who have significant disabilities in the school setting and providing advocacy assistance for families whose children have a variety of disabilities. I do not profess to have all the answers. But, I can offer advice from a variety of perspectives. The first piece of advice I always offer is that tomorrow is another day.
I have been following another blogger as her toddler with Autism grows. When I first started reading that blog, I smiled a knowing smile to myself. The frustration and love for her child were evident in her writing. Yet, I knew she had many days of discovery in her future. Life would change, sometimes for the good and sometimes for worse. She is now blogging about how cool it is to watch her child start to do tasks that her friend’s kids did a year ago. I wanted to say “I told you it would be okay” so many times, yet did not feel it was my place.
My advice to all adults out there, parents or otherwise, is to be patient. Be patient with yourselves. Be patient with your children. Be patient with the kids you have in your life. Know that parents are trying to figure out how to be parents. Don’t judge, even if your kids share a disability diagnosis. Be kind. Remember that you’re a role model for those around you. You don’t have to be perfect, just patient.
Oysters and Life 