Your kid will change costume ideas at least two times one year.
You won’t be able to find the costume in their size and you’ll have to go on a hunt at least one year.
You’ll run out of candy for TOT’ers one year.
Your kid will pick the same costume as a hundred other people one year and you’ll try to accessorize your Elsa to set her apart one year.
You’ll get crappy candy one year.
Your kid will refuse to keep on the mask, or the hat, or the wig, for a costume one year and they’ll look like they’re from a small town in Alabama instead of being Luigi in Nintendo overalls, or a sweaty pineapple instead of Princess Belle. You will try again other years, thinking this year they will keep their promise to wear it for at least 3 houses.
By the time you have 3 kids, you suddenly reocgnize the pro moms (and dads) who pick costumes that are recognizable once they are put on, without accessories being required, but which can be used if they want.
You will lose that one accessory they really liked and would have worn, when you take pictures for an event before Halloween and they’ll be mad and not want to wear the costume without it.
If you love dressing up, you’ll get a kid who dislikes it and is over it by age 8. If you hate dressing up, you’ll get a kid who wants to, and insists you do, too.
We won’t discuss how Halloween costume sizing is configured. But it’s extra fun when you’re either a tiny grown up and it’s all too big, or you’re “super sized” and there are only 3 costumes in existence that really work for you if you don’t make your own.
Your kids will be upset when you call time on TOT’ing some years, and other years they will be finished before you are, and you’ll be baffled.
You will teach kids about the 10% parent tax off the top of all Halloween candy, and be upset that your favorite one isn’t there. (The 5% you eat while “holding” their bag for them is NOT included in the parent tax. This is an additional deduction.)
Make up will be smeared immediately. If not smeared, the wearer will be itchy all over their face and will keep trying to just “poke” the spot with a fingernail without messing it up. (It won’t work.) Your kid will sweat or cry if the make up even makes it out of the door, and everyone looks the same by the night’s end: a distorted version of the Joker from Batman.
Your kid will say something embarrassing to your neighbors. (This can be avoided by trick-or-treating at a grandparents house, or another area where you don’t live and it looks like a place that would have good candy.)
You will confuse your Elsa with someone else’s and scold the wrong kid at least once for not saying thank you and be mortified.
One year you will think you just drive your kids crazy with your holiday antics and you’ll decide not to do something, only to have them ask why you aren’t doing it, and finally find out that despite the feigned embarrassment of you, they actually liked your holiday enthusiasm!
Your pumpkin won’t last until Halloween one year because you live in Florida and carved it more than 24 hours in advance.
You will make at least one trip to the ER because someone tried to slice off their finger carving pumpkins.
If you live in Florida, you will give in, eventually, to the theme park haunted houses, and pay a ridiculous amount of money for an experience that rarely comes with much candy, and that your kid will harass you to go to, insisting they can handle it, and you’ll have to carry them out before the end.
The reward for all of this will be a big pile of sugar that will make your kids hyperactive, ruin their teeth, and cause them to leave candy wrappers everywhere until you throw the rest away a few days after Halloween. (The trash can you will use is the office. You can’t prove it’s Halloween candy in the law firm bowl.)
One year there will be a pandemic and most kids will have to forego traditional activities in favor of quarantine holiday activity ideas.
You may be longing for the days your children are old enough that you don’t have to participate in this craziness anymore.
Until those days come, for one reason or another.
Then you’ll miss it. All of it.
So slow down. Take it all in. Every tantrum. Every mistake. Every half of a costume. Take pictures. Because believe it or not, you’ll miss it. And when you’re no longer here to miss it, they will miss it, and eventually, they will pass many traditions on to their own kiddos, or any kids they care about. (Including fur baby traditions.)
In part one, I spoke about the medical experiences that have led to clinical PTSD and anxiety about medical appointment, especially when meeting new doctors. I probably expressed how if it all possible, I always take a second adult with me to medical appointments because there will always be more than one of them, but it’s so easy for them to say you hurt something wrong unless you have a witness present. But this time I expressed that I met a new doctor who gave me what I described as as a new term: a medigasm.
Even as I finally finish the last of the labs on the last possible day I can do them before my appointment, after putting them off since March because of fear of going to a lab among the virus, I at least am able to take a little bit of comfort in knowing this is my new doctor, and now I can see him virtually. Finally, a rheumatologist is on my case. With a neurologist. It’s like medical Christmas! Now prayers that nothing happens to the insurance and all of these doctors remain on the same or another plan together. I’m starting to just have anxiety about losing doctors now.
Below are all of things he said that, each on its own was shocking enough to rock my world, but together, left me speechless and wondering if I was about to wake up from a dream. I felt as if someone had told him all the right things to say to make me think I was crazy, or that I was on candid camera. If you’ve experienced all that is the world of a professional patient, you will understand each one of these statements and why they are shocking. Imagine getting them all at once.
1. “I have several patients with your condition.”
What? I have never even met anyone else with my condition. My pulmonologist has one other patient with it. That’s the extent of people I even know exist in the area with this condition. It is diagnosed in 1 out every million people, so many doctors don’t even meet someone with it, and it isn’t in their norms wheelhouse unless they’re done a felllowship at the Cleveland Clinic, where this condition is studied, as my hematologist did. But even the rheumatologists I met had to admit they did not have any patients with this condition. So hearing that this doctor has several, while also hearing very clearly that he understands this disease the way you would imagine doctors understanding medical conditions without having to research them. That alone was enough to shock the conscience.
2. “This is not about my ego, it’s about your health.“
I’m sorry can you repeat that? Louder for the doctors in the back.
3. “I’m an expert in medicine, but I’m not an expert in your body. You are the expert in your body. I need your expertise to be able to do my job.”
OK, now you’re just poking fun at me, aren’t you?! If not. I have a liar of doctors who could use your guidance!
4. “I am never going to treat you like you’re crazy.”
I am not sure that’s entirely medically responsible. If I wasn’t crazy before, I am most definitely crazy now, after dealing with a bunch of doctors who are not you. I am heavily medicated for your protection. You have been warned. But thank you for giving me the opportunity I wish others had given me to try listening.
5. “I get the sense you can hold a lot. I can tell you are in more pain than you are telling me. I have a feeling by the time you get around to asking me a question, it’s way out of the spectrum of what is normal and I need to listen.”
🥺🥺🥺 I have said these words to people, trying to get them to understand my pain tolerance. How did he know? I didn’t tell him. But this has happened repeatedly, to the point that most people who know me enough to know anything about my medical condition have probably heard about this issue. It has been repeated in many settings. The most telling was the one when the kiddo‘s father went after the nurse to explain that my tolerance for pain was much higher than normal people, including his, and that if I am crying, that means something is wrong. Got to give the man credit there. 🙃 He was not wrong.
6. “If you’re telling me something is wrong, I don’t care what the numbers say; it means we need to keep looking to find out what is goingon.”
Holy shit. I mean, just holy shit. Excuse my language, but there is no other thing I can say at this point that expresses my shock that this guy would actually pay attention to something if the labs come back showing that I am healthy.
7. “I’m so sorry a doctor treated you that way. What an awkward situation to be in.”
OK I’ve heard that’s weird. I’ve heard a sort of stunned silence because the doctor didn’t know what to say about what would happen to me. I’m sure as a professional, they were wondering in the back of their minds if I did something to provoke it. But this is the first doctor who actually acknowledged comprehending how completely uncomfortable my experience would have made ANY patient. He actually recognized the emotion I would’ve felt in that circumstance.
8. “Thank you for bringing me these records.These will help a lot. They’ve given me a lot of background information to work with.”
He said this while actually looking at the records and making reference to what they said! To be contrasted against the many doctors who say thank you for bringing them records and stuff them into the back of the file, never to be seen again. And he actually understood why they were each significant and why I brought those specific records and not every record I have. This showed me that he understood my disease. That is a rarity in itself.
9. “Oh you came from this doctor? I love him! I work with him all the time. I love working with him.”
One of my dreams is that all of my doctors will communicate with each other the way my late husband’s doctors communicated with his oncologist at meetings to discuss his treatment plan. This doesn’t happen for people who have an autoimmune disease covered by a rheumatologist, who is usually primarily set up to treat arthritis type diseases, and only sometimes deals with other areas like vasculitis. I still don’t understand why there is not a specific position to deal with autoimmune diseases like an oncologist, and we are left to see specialist after specialist and try to get them to communicate with each other, which sometimes leads to inferiority/superiority/insecurity issues and may even cost you a doctor. You would be surprised how many doctors operate like teens or young adults when it comes to inferiority/superiority complexes, and will not hesitate to put something in your medical record out of spite, that will hurt you when subsequent doctors review it. You can tell me this doesn’t happen, but as a retired professional, I know this happens. I would hear about previous attorneys, and I would carefully evaluate the client to try to find out if the other attorney was actually a bad attorney, or if it was a bad client and likely to be a repeat. It’s a valid concern. And a very irresponsible and immature way for a doctor or other professional to respond. It was such a relief for this doctor to understand and acknowledge how Trumatic it was to go through that experience when I was already going through a Trumatic medical experience to begin with.
10. “You’re on this drug? Already? I was one of the first doctors do use that drug when it was released.”
😳 Are you serious!? 😳 It turned out he had been trying to figure out how to get his patience on the auto injector, which my pulmonologist had just gotten me approved for. He was very excited to know there was a way to do it, and was very excited that I was already on that treatment because that would’ve been his recommendation. He knew extensive information about the studies, and from there on, his knowledge surpassed mine. That’s the way I like it.
There were so many wonderful things he said, that I’ve decided to make this into a three part blog. I have written a lot of blogs and posts complaining about doctors, and they have taken a lot of space. But never have I had so many good things to say about a doctor that I ran out of space twice. But this is that time, and I’m willing to give it the time and space it deserves. Because I’ve noticed good doctors have no idea what other doctors treat us like. And we deserve better! So demand it! Wait for it. It took me 3 years. One step at a time!
OK, we get it. There are many legitimate reasons that people may not be able to wear a mask, or may not be able to do so without great physical or psychological trauma associated with it. This is valid. We need to have respect for people not wearing one, because it’s possible they have a legitimate reason we know nothing about.
That said, I would like to point something out. Those of us who are high risk for this virus have been isolating since March. We have not stopped. Especially if we live in the fabulous sunshine State with Governor Trump. We take a lot of extra measures, which protect us as well as others. We have our groceries and medications delivered. We didn’t go to the salon as soon as it opened. We are still doing virtual appointments whenever possible.
Furthermore, if somebody jumps into the elevator when it’s not empty enough to social distance, I get out. I have lost my place in line because the person behind me at the ATM couldn’t keep their distance, so I stepped aside and let them go. I understand that I am the weak link. It’s frustrating, and it isn’t my fault, but it’s not their fault either. So I try to keep that in mind and worry about myself.
I am grateful for the people who can and do compassionately follow all of the rules and precautions, even when they are not high-risk themselves. They are doing it because they care about others, and not just about themselves. Think about that. The selflessness.
But…. you’ve got a waiver. That’s great! It’s wonderful that somebody recognizes your medical need to not have to wear something that causes you any kind of distress for medical reasons. But here’s the thing. That doesn’t give you a right to just ignore the effect it has on other people.
If you can’t wear a mask, even if it’s justified, you are still creating a dangerous situation when you’re close to people without one. You are also creating a dangerous situation just walking around breathing on things that other people will touch even if they are not near you. So why are you doing it? Why don’t you stay home?
Sounds awful, doesn’t it? It kind of is. It’s what we’ve been doing since March. We are high risk, and while some counties have passed mask mandates, and there are minor things being done to try to protect us, for the most part, this country has failed to protect us in the ways other countries have succeeded. Ask yourself what is different in the land of the free and the home of the brave.
So what are we told to do? Stay home. We want to open the economy back up, so if you happen to be in that significant number of people who is high risk, just stay home forever. Or until there is a vaccine or a cure, if there is ever a vaccine or a cure, and if you live long enough to see it.
If you’re looking for pointers and what the current recommendations are, here’s a Link to the CDC website. Please note that nowhere does it say to wear masks “OR” social distance. It says to wear a mask. It also says to social distance. It also says to wear a mask especially if you are unable to social distance.
Here’s my point. Just because you have a mask waiver doesn’t mean you can and should just go on about your business, without a mask, and pretend the virus doesn’t even exist. Just because your health condition is better without one, and perhaps your risk is low based on your age and other health condition, doesn’t mean you can and should just go plant yourself in the middle of a group of masked people who, for whatever reason, are taking the virus seriously enough to “wear the damn mask.”
It’s Florida. It’s hot. Masks suck. So if people are wearing them, there is a reason. Just as you would like us to respect the fact that you cannot wear one because of your medical condition, perhaps you can also respect that because of our medical condition, we absolutely cannot be subjected to being in the same space as you without one.
So allow me to share the advice we have been given because of our special medical conditions. Stay home. Have your food and medications delivered to you. Use Amazon. Use telemedicine and other virtual ways of interacting with people.
No, it’s not fun. It’s not fair to anyone. Nobody asked to be in the circumstances they are in. But here we are. You wanting to be respected for your reasons for not wearing a mask, and I, wanting to not die because of my medical condition and people who don’t wear masks, don’t wear them correctly, or don’t stay home when sick.
When you think about it, it’s really a matter of mutual respect. Just as I step aside when I require more space than the average person, you can keep a bigger distance between you and other people wearing masks if you know that not wearing one, while medically necessary for you, can be deadly for those around you. You can go to the grocery store and the pharmacy. You can breathe all over everything. That’s your right. But if you want people to respect it, you should also respect their right to protect themselves from it, and do your best to minimize the risk you create for them. I expect nothing more from others than what I’m willing to do for them.
Respect is not something that is automatically given. It is earned. Ideally, people would respect each other out of human decency. But life has taught us that the amount of respect we give someone we don’t know is tentative, and their actions can change the level of respect we have for them in a very quick minute. So do what’s best for you. But don’t forget to consider others when you do it.
Finally, if by some chance you are one of the many, many people with a mask waiver who doesn’t need it and just doesn’t like being told to wear a mask, an interesting question has come up: If you don’t need to wear a mask because God will protect you, do you also not carry a gun since God will protect you? It seems to be the same crowd. The same crowd that says restaurants have a right to deny service to people based on their sexual orientation. Suddenly, however, the same group feels their rights are being violated by being denied service if they refuse to wear a mask, just like if they refuse to wear their shirts and shoes. In fact, I believe the technical word used to describe people line this used to be “snowflake.” So please practice what you preach. It’s just a mask. There is no reason to become unhinged and go all out Karen about it. We, those who wish to protect ourselves for various reasons, understand we have offended your delicate sensibilities.
*A draft from a few weeks ago that I never released. Interesting to read it just after the election since I wrote it just before.
2020. It will forever be a warning, a flashback, a joke, a survival story, a sad story, and a story with a lot of laughs and jokes sprinkled in.
The memes just keep circulating. The division, furthered by an election year that stands to benefit from the polarity from one end or the other, depending on which end you stand on, has only amplified every single issue.
But there is something much deeper going on then the crazy predictions of 2020 bingo. We are dealing with a lot. But we are always dealing with a lot. What’s different this year is not so much masks, restrictions on our speech, violation of our privacy, as it is life… life and death.
All of the big issues of 2020 have been issues of life and death. The virus is the most obvious of them all. Some people believe it’s real. Some people believe everyone who has lost someone has either made it up, been lied to, or is part of the conspiracy. In the middle of it, you’ve got to be pretty off your rocker not to understand that no matter how important you think it is, many lives have been lost, and many more lives are at risk depending on the decisions people make, and sometimes, depending on the decisions other people make for you. That’s heavy.
Add to this, the fact that our children are not immune to this. I mean, yes, they are less likely to be affected to the same degree. But they are not immune to what is happening. They are feeling the stress and the burden of worrying that they will get their parents or their grandparents sick. That they will become sick and their parents will be mad because they didn’t follow directions. They are worried they will get their teachers sick. When a student is absent, they probably worry that the student could die. I can’t imagine the long-term effects of this, whether our students are in classrooms or at home. They will be affected in some way. We all will be. But again, it is not just adults dealing with this. It is also children. And it is still life and death. What life and death issues did you really have to worry about as a child? Looking both ways before you cross a street? Not touching snakes or spiders if you don’t know what kind they are? Not talking to strangers? Did you have to worry about breathing on someone, or getting too close? Or forgetting your mask and killing them by accident?
OK let’s forget about the masks. How about the schools? Surely we can open the schools. That’s definitely something we all know is necessary. But… Do we open the schools physically and risk children and teachers dying? Or do we try to do this virtually, knowing that it will be substandard education compared to face-to-face, but will keep everyone alive? And for how long will we need to do this? It’s hard to commit to some thing not knowing how long it will last. Again, for all parents and teachers, this has been a life and death decision. Some desperately needs school services, or confidently believe the schools can protect their children. That because their children are healthy, they will probably be fine. But a part of them is worried. It has to be. I can’t imagine the parent who will have to live with being the first parent to lose a child because they had to send them back for any number of reasons. Or to see what these kids will go through when a teacher dies. Life and death. They’re too young for this.
Then there’s the racism. Racist law-enforcement officers are being caught left and right doing things they shouldn’t, sometimes resulting in death. Good officers are being targeted because of the actions of others. The same is happening in the black community. People are being targeted just because they are black. Black police officers are in a position where they feel unaccepted and unsupported by either group they belong to. And at the end of the day, whether you are in a uniform, or trying to protest for equal rights and treatment, it’s a life and death situation. Many police officers don’t make it home. Many unarmed black men don’t make it home. Life and death.
People are dying, and just when it seems like we might be turning the corner, some of us live in states where our leadership has failed. We live in a world that is supposed to be all about freedom of speech, freedom of the press, but where everything is being manipulated by a government that has no problem misleading the American people, as long as it results in political gain. Even if it means giving out false information that will put lives in danger simply because they did not have the information they needed so that they could make safer decisions. Life and death.
I don’t know what the rest of the year has in store for us. But I know 2020 has shown no signs of slowing down. With the election just weeks away, I wish I could go to sleep and wake up in February after the inauguration. And whatever comes after it. I suspect this will be one of the strangest elections ever. I just want everyone to remember one thing. If by some chance, the president is reelected for another term, please remember all of the ads, speeches and tweets about how this promises to be a fraudulent election. Because the only person who would be making those accusations now, would be somebody who expects to lose.
In the meantime, take it easy on each other. People have lost loved ones without being able to say goodbye. People have had scares they have made them appreciate life and people they love in ways they never thought they could. People have had to really search themselves for answers about difficult questions and make big decisions. Life and death decisions. Try to show each other a little grace. Somebody showed me grace early in the year, and it became my word for the year.
I am (W)Ron(g).
(W)Ron(g) I am!
I do not like that (W)Ron(g)-I-am!
Do you like
This teaching sham?
I do not like it, (W)Ron(g)-I-am.
I do not like this teaching sham!
Would you teach kids here or there?
I would ONLY teach them HERE,
I WILL NOT teach just anywhere.
I do not like
This teaching sham.
I do not like it, (W)Ron(g)-I-am.
Would you teach them in your house?
Would you teach them with a mouse?
I’ll ONLY teach them in my house.
I’ll ONLY teach them with a mouse.
I will teach students HERE, NOT THERE.
I WILL NOT teach just anywhere.
I do not like this teaching sham.
I do not like it, (W)Ron(g)-I-am.
Would you teach in a plastic box?
Would you teach a kid in a mask made of socks?
Not in a box. Not in their socks.
ONLY IN MY HOUSE
ONLY WITH A MOUSE
I will teach them HERE, not THERE.
I WILL NOT teach just anywhere.
I do not like this teacher sham.
I do not like it, (W)Ron(g)-I-am.
Would you? Could you? From your car?
Teach them! Teach them! Here they are.
I will not, shall not, from my car.
You may like it. You will see.
You may like it, if spaced by three feet!
I will not, shall not, at three feet.
Not from my car! You let me be.
I will not teach them in a box.
I will not teach them in their socks.
I will not teach in your schoolhouse.
I will ONLY teach them with a mouse.
I will ONLY teach them HERE, not there.
I WILL NOT teach just anywhere.
I do not like this teaching sham!
I do not like it, (W)Ron(g)-I-am.
In rain! In rain! In sun or rain!
Could you, would you, in the rain?
Not in the rain! Not at three feet!
Not in my car! (W)Ron(g)! Let me be!
I will not, shall not, in a box.
I will not, shall not, in their socks.
I will not teach without a mouse.
I will not teach in a schoolhouse.
I will ONLY teach them HERE, not there.
I will NOT just teach them anywhere.
I do not like this teaching sham.
I do not like it, (W)Ron(g)-I-am.
Say! In the park? Out in a park!
Would you, could you, in a park?
I would not, could not, in a park.
Would you take them from a train?
I would not take them from a train.
Not in a park. Not in the rain.
Not in my car. Not from three feet.
I do not like this, don’t you see?!
ONLY my house. Not in a box.
WITH a mouse. Not in their socks.
I will ONLY teach them HERE, not there
I will not teach just anywhere!
You do not like this teaching sham?
I do not like it, (W)Ron(g)-I-am.
Could you, would you, with a shield?
I will not, shall not, with a shield!
Would you, could you, on a field?
I will not, shall not, on a field.
I will not teach them with a shield.
I will not teach them in the rain.
I do not want them on a train.
Not in the park! Not from three feet!
Not in my car! You let me be!
I will not teach them in a box.
I will not teach them wearing socks.
I’ll only teach from my own house.
I’ll only teach them with a mouse.
I will not teach them here or there.
I will not teach just anywhere!
I do not like this teaching sham!
I do not like this, (W)Ron(g)-I-am!
You do not like it. So you say.
Try though! Try it! And you may.
Try it and you may, I say.
(W)Ron(g)! If you will let me be,
I will try it. You will see.
Say! I like this teaching Sham!
But I’m feeling ill now, (W)Ron(g)-I-am!
I shouldn’t have taught if not remote.
I shouldn’t have come to your clown show!
I will not teach like this again.
Not in a park. Not from a train.
Not from my car. Not spread three feet.
This is so bad, so bad, you see!
So I won’t teach them in a box.
And I won’t teach kids wearing socks.
And I won’t teach in your schoolhouse.
And I won’t teach without a mouse.
I’ll ONLY teach them HERE, not THERE.
I WILL NOT TEACH JUST ANYWHERE!
I still don’t like this teaching Sham!Get it together! (W)Ron(g) and Crockoran!
Adapted by Gladys D. Smith-ManganfromGreen Eggs and HamBy: Dr. Suess/ Theodore Geisel
I was so disappointed today to hear that, while teachers won the very important case of the Florida Education Association against the Governor and Commissioner of Education of Florida, granting an injunction against an order requiring all counties in the state to open brick and mortar schools no matter what their numbers were and what their local health officials said, and while this case will set precedent (assuming no appeal overturns it), reporters were laughing at it this morning on the radio. Laughing that it was too little, too late, sarcastically saying, “Good for you, Teachers, but what good does that do now? School already started. What are you going to do, not come back? HAHAHA!” Really, Florida? Is that supposed to be funny? It’s inhumane how many teachers were forced to risk their lives or lose their livelihood, despite having risk factors that put them in categories where they SHOULD have been given an online option. These are TEACHERS. Without education, every other career ceases to exist. They are professionals. They are not caged animals!
Actually, I think refusing to go back in until there is a safe plan is EXACTLY what they should do. Parents may not like it, but they are also poorly informed (intentionally, by their government) and would NOT be any happier burying their kids, or leaving them orphaned if THEY get sick as a result of the child bringing the virus home, and killing a single mother.
One thing I keep hearing is everyone saying, “If teachers don’t want to go to work [in person], and everything can be done online, because ‘schools aren’t daycares,'” the common rallying cry, continuing with: “Why do we even need teachers, then?” Here are my thoughts on that.
It has been made apparent during the HOURS and HOURS of meetings by school boards, medical advisory committees, and union meetings, that without these professionals, society would crumble. Specifically, the following parts of society would fall apart:
Food: Without teachers, children all over the United States would go without proper nutrition. It is true that some students are having their first meal since March in schools that have opened back up.
Shelter: Without teachers and schools, some kids don’t have a safe place to exist. Ever. They live in cars, on the street, on the couches of friends, with family members, in foster care and anywhere else they can. The only stable place for some of these kids is… school.
Child care. Without teachers, parents would have to find someone else to be available to help younger children with everything from a runny nose, to a fight with a friend, to a potty accident, to tying his or her shoes. This includes hugs, kissing boo boos, and just making them feel better when they are young, and sometimes, even when they are teens. Some have never had this, and they attach to teachers like they are their moms or dads. If you have any doubt about this, ask any parent how many times their child called them by their teacher’s name, and ask any teacher how many times they’ve been called, “Mom.”
Custodians. It is important that, even if the kids live in filth, when they go to school, their rooms shall be sanitary, so as not to spread the virus. They should supervise going to the bathroom, without violating any other policies, like watching kids in the bathroom. They are to clean and disinfect between classes, but may not accept air purifiers or cleaning products donated by parents, and may only use things like the gallon of sanitizer some teachers received with no pump. They announced they would no longer be providing Lysol wipes to some school nurse offices. How do they keep it clean for your student, as promised by the state? Your guess is as good as mine, and as good as the teacher’s. But it’s his or her problem.
Transportation. Remember that part of teachers being able to educate our children includes getting them to school. Many, many parents rely on public school buses. Like custodians, these people will spend HOURS each day with many children going in and out of their doors, including some who will show up without a mask for a variety of reasons, and some who will take off and throw away the one given to him/her by a bus driver. But it’s easier to risk their lives than for parents to take their kids to school, right? Businesses won’t accomodate that for employees who are parents. Why not? Why isn’t that the standard?
Medical care. Without teachers, some children would never get necessary medical care, as the only medical professional they ever see is the school nurse. This is the only way many children have a chance of anyone even knowing they need medical care, and sometimes, forces the families to obtain it when they wouldn’t otherwise, because their kids can’t return to school without a doctor’s note. Further, some don’t have insurance and can’t see a doctor absent an emergency room that is required to take them, so the clinic is a luxury they do not have outside of school hours.
Social Workers. It has been argued that domestic violence and other abuse, neglect, or abandonment will flourish if schools don’t open. The theory is that school is the only chance for teachers to spot families or students in need of assistance through social services. If you didn’t hear about it, one article told of a student who began the year logging onto virtual learning, only to have her teacher mute her because of the shouting in the background, and then watch the student cover her ears as a shot rang out, killing her mother, before killing the video feed as the bullet destroyed the school computer screen. I would argue that there is a better chance of families hiding issues when they ship their kid to school, than if there is a microphone and camera on in the home. Privacy issues also concern me, but it is definitely worth noting that teachers are mandatory reporters of abuse, abandonment or neglect, which puts them in the additional roles of “social workers” and “first responders” as part of their daily responsibilities.
Socialization. This has been the primary reason people have cited for returning kids to school, almost at any cost. Kids need socialization. Their mental health is struggling. Some are becoming suicidal. The answer to this appears to be socialization. At school. This is where they will receive the necessary “socializing” and care from friends and teachers that they need to live. Except we are in a pandemic and they are not allowed to hug, get close enough to whisper, or do many of the things they want to return to school to do. Psychologists have written that if people think staying home a few more months and doing virtual will cause psychological trauma, hang on tight as we open the schools so you can see what a child will experience when a friend or a teacher dies, especially if they feel in any way responsible for it. Now imagine they lose multiple young friends and/or teachers in the space of a year. Ask some of the survivors of the school shootings how quickly they recover from that psychological trauma, and if it’s better than the trauma of being home a few more weeks!
So to all of the people who think teachers are NOT underpaid, undervalued, underappreciated, and under a ridiculous and unfair amount of stress and responsibility for little compensation, who are asking why we even need teachers if they aren’t going to provide child care, food, medical care, social services, and loving to our children… obviously we need teachers! So if you are a parent and are not supporting teachers, these heroes who stand in our place as pseudo-parents for more time than many of us spend with them during each week, my question to you is…
Today in Orange County, Florida, it’s our turn to join the ranks of schools around the country and the world that have tried to open their doors in the middle of the 2020 pandemic. It has been a nightmare getting here, and even as the doors open, the legal battles continue. Even with directives and mandates, science proves time and again that it does not bend to human will. If we learn nothing else this year, we have learned that.
I just want to wish every single one of you all of the luck, prayers, peace and hope I can muster as you start this day. You are warriors. Whatever some ignorant fool said yesterday doesn’t matter. What I say doesn’t matter.
What matters is that no matter how you’re doing it today, you are taking a stand, for kids, for teachers, for your families, for yourselves, for society, and for each other. Some of you are sitting it out for yourself and your family, so you can be here next year to teach when it’s safe. Some of you are teaching from home, whether or not you wanted to, which takes a lot of patience with your pets, your children, and your home on display for critique by the best critics of all: children, and sometimes their moms, dads or others. Some of you are going into the classroom. Some of you are going by choice, because that’s how strongly you believe in what you’re doing. Some of you are going because you don’t have a choice. My heart is breaking for you. Some of you are just rolling with the punches, because you can, and you are praying for the best. I’m praying with you.
I have used this year to teach my daughter so much about humanity, government, money, power, compassion, democracy, whatever it is we have masquerading as democracy right now, international relations, consumerism, and just a lot of topics that nothing else could have taught better than 2020. Because I am somewhat a teacher at heart, I turn everything into a lesson… because it’s what we do in our family. Which means I know it’s exactly what you will do. And you will do it much better and effortlessly than I can without the professional training you have. It’s what you do.
At the end of the day, or the year, 2020 is going to be one of the biggest chapters in history that has ever taken place. Things are going to get even harder. You are going to be asked why. You’re going to be asked why something inexplicable happened. You’re going to be asked why we are where we are. You’re going to be asked why something is happening NOW, before we even know it’s happening. You’re going to be asked questions you don’t even have the answers to. You’re going to try to figure it how to answer without an angry parent showing up minutes after the bell lets kids go, because they don’t agree. You’re going to be asked to explain why something is fair, and you’re going to do your best to answer, even when you don’t think it is. Because you know what children need to hear.
Somehow, you’re going to figure it out. Because that’s what teachers do. And that’s why lawyers can be lawyers, and doctors can be doctors, and engineers can be engineers, and even politicians can be politicians. (Because anything can be exploited.) But at the end of the day, everything is made possible because somebody taught…. someone taught us all that anything can be figured out. And if you don’t know something, you will find the answer. No matter what anybody chooses to do in life, that is the most important lesson you all teach us. You are the foundation of our future and you are responsible, in large part, for who these kids become. And they are starting from a place none of us have ever had to be. For many of them, you are their only beacon of hope, honesty, and hopefully a little bit of compassion.
I have also learned over time that kids are often our beacon of hope, honesty, and compassion. I hope that if nothing else happens today, at least one child reminds you why you are doing what you’re doing, and that you find some sense of the incredible value you have to so many people, which has been hard to see in the current climate.
I am part of a law enforcement family. My family is also made up largely of military, doctors, and so many educators. Today, you are the Frontline workers. Today, you joined the ranks of my family members who have been fighting on the front lines for generations. Today you have the impossible task of doing what you do every year: not just teaching a curriculum, but shaping the little humans who will be responsible for making something out of whatever is left of this world when 2020 finishes its work. For some kids, it will be the first time they get real information about what’s happening in the world.
Whatever you do, try to be patient with each other. Try to be patient with kids. We never know what they were taught. (Or rather, sadly, we do.) Remember everyone comes from a different background that has shaped their view of the world and their reactions to it. But in this…. everyone wants to stay alive.
Please know that I have not stopped praying this week for all of you, and will continue to do so on a daily basis. I pray that you all make it through this year, in all of its fluidity, and that you are able to tell the amazing stories of your experience to many future generations. Please know I am here, and I am a human being before anything else. Please don’t hesitate to contact me, and I will do anything I can to help. I will listen. I will donate what I can. I will fight for you in whatever small ways I can find, and in bigger ways if they present themselves.
When it’s all said and done, there are not enough words to thank you for what you do. Anybody who doesn’t understand this should really consider why children so often call their parents by their teachers’ names, and their teachers, “Mom.” Thank you for everything you do for put babies, young and old, and may you stay safe and protected while you offer up your lives for one of the most sacred professions in existence. May the people who don’t get it yet learn to appreciate you as they should.
Today, as always, you are the heroes of the world. Don’t let the fools of the world be the voices you hear just because they are the loudest. Know your worth. Make sure your students know theirs. There is so much more to teach this year than what is in a book. As always, I know you will rise to the occasion.
Thank you. With everything I have, thank you. Wear that invisible cape proudly! (And with a mask.)
If you have dealt with a serious illness of some kind and you have had to search for a doctor, or change doctors more than once, you have undoubtedly encountered somebody who accused you of doctor shopping.
I used to get very defensive about this. And then one day a lightbulb just went off. So the next time somebody, usually my spouse (now my former spouse) or a family member casually made this accusation, either directly or in an offhand indirect manner (otherwise known as passive aggressive) I was ready:
“How did you get the shoes you’re wearing?“
“Why does your purse match your pants?”
“Who gave you the ring on your finger? Is it stolen? Or did you or someone else pick it for you?”
“What kind of cereal do you keep in your house, and why? Do you have a favorite?”
“Your glasses seem to fit your face. Am I to assume you can get such a great pair of glasses off of Amazon? And they magically fit!? Wow.”
“That’s a nice car you have there. Who gave it to you?”
“Is that health insurance you have? Can you go to any doctor you want? That must be nice. How did you end up with that particular insurance? Have you ever wished you had a different one?”
“That’s lovely nail polish.”
“The highlights in your hair bring out the color in your eyes.”
“What kind of make up do you use?”
“How did you get the house or the apartment you’re in? Does it have enough rooms for all the people in your family? If it does, was that on purpose? Or did you just go out and buy the first house you saw on sale, and just decide to try to fit into it, whether or not it was too small or too big? Or affordable? Or accessible if you had a disability? Or close to a school that you need for your children? Did you just luck out by getting the things you wanted and needed?”
“Wait, what’s that? You mean YOU picked your own car, house, dishes, clothes, jewelry and accessories, toys for kids and adults, and in some cases, even schools? But why? You wanted to drive a quality car, wear quality clothes, live in a quality area in a suitable home, and have your clothes and accessories reflect YOUR lifestyle and personality? That’s okay with you? Isn’t that just like doctor shopping?”
What’s the Difference?
Why is it that you can shop for anything from your underwear to a gift for a colleague, from accessories to the home you will pass down for generations, from the food on your shelves to the school you will go to to get an education that will determine your caree; and you are even advised from early youth and going forward about the various factors you should take into consideration when making purchases? Why are these decisions considered so important and expected to be taken seriously as you enter the adult world and start learning the value and consequences of your choices?
In case you weren’t familiar with my particular brand of sarcasm, that was a rhetorical question. The answers are obvious. Every time you have the opportunity to make a purchase as a consumer of anything, whether it is a physical item or a service, you have both the opportunity and the responsibility of making an intelligent purchase. You also have the choice of making fun purchases sometimes, which is just fine, as long as you have your priorities taken care of. Why wouldn’t you shop for the best, or at least the most appropriate for you?
For reasons I can’t understand, this doesn’t translate to finding a medical professional for your health care. I have been a patient my entire life, and I’m now what I consider a “professional patient,“ meaning it is now my full time job, and the only one I have the time and ability to do, other than raise my kids. From the time I was a toddler, visiting the KinderCare Pediatric Hospital in Germany, or having allergy tests done in Philadelphia while we lived in New Jersey, or having urinary/kidney issues, in both of these places and in Alabama, during two of my dad’s tours, I’ve been a patient, so I was trained early.
Lately, however, I’ve become extremely disappointed and outright offended by people who accuse people with special medical needs or desires of “doctor shopping” if they go to a doctor who gives a different opinion from another one.
What is the alternative, exactly, that people expect us to do? Just take the first doctor that comes up when you flip open the list of doctors on your insurance and follow the kindergarten rule: “You get what you get, and you don’t have a fit!”? What if your doctor doesn’t have any experience with your rare medical condition? Tough luck?
First Doctor Shopping Episode
The first time this happened was when I was looking for an obstetrician to deliver my second child. My first child ended up being born by cesarean section. At the time, I was young. I didn’t know I had choices. I thought when the doctor said it was time, it was time. I didn’t think that meant it was 530 and time for him to go home and have dinner. And maybe that wasn’t the case. I was in labor for over 30 hours. But the point is, I was too young to even ask the right questions.
Later I found out this wasn’t uncommon. In fact, it’s more common in the United States than it is in other countries. I spent the better part of a decade angry because not only did I end up having the surgery, but I missed the first two hours of my first born child’s life while everyone else got to see her in the nursery, followed by my first moments with her being in front of EVERYONE who gathered into my room after they saw me rolled from recovery to my room, and then followed me as they brought me the baby. That was 21 years ago. I was mad. I’m still mad.
So when it was time to have another baby, I was 10 years older, and a lot more educated about the choices I had. One of those choices was the right to try a natural birth. However, the doctors I chose didn’t seem to even want to. I learned through a support group that most doctors would not do one after a cesarean birth. I set out on a mission to find one who would. I went through three obstetricians before I found the right one. It was my husband, who accused me of doctor shopping. Not to say he was the only one, because I know he wasn’t. But he was the most significant, because I was having our child.
The first doctor was a woman who flat out said she would only do a cesarean delivery. I moved on to a different doctor in her practice that I heard great things about. However, he said he would also only do cesarean, and convinced me that no doctor would do a natural (vaginal) birth after a cesarean (VBAC). I had grudgingly settled for this, until about the 35th week when I asked about watching the delivery, maybe in a mirror, even if it was a cesarean. Blood and guts are usually not an issue for me. Growing up with allergy shots and medical procedures, they fascinate me rather than disgust me. He didn’t know this. Even worse, his exact words to me were:
“You don’t want to see that. Just watch the discovery channel.” 🤔
I was so angry, it didn’t even take full effect until I had left the office and processed that he actually said what he said. I was around 35 weeks, so it was a problem. Luckily, I was able to find one more recommendation, and the doctor was willing to see me and take me on at 35 weeks.
Before I left, I went to the appointment I had already scheduled, and I told the doctor I had checked with a discovery channel, and as it turned out, they were not airing my delivery of my child after all. He was completely lost. I reminded him of what he had previously said. He didn’t even seem apologetic. It was one of the only times I have gotten up and walked out of the doctors office and left him sitting in the room rather than the other way around.
Like Night and Day
Not only did the new docto see me at 35 weeks, and offer to let me do a trial VBAC, but he was the FIRST doctor to look at my records and do a physical exam to determine my chances. In the end, it didn’t make much of a difference as far as a natural birth, because what he discovered was that an accident I had when I was young fractured my pelvic bone and it was at an angle that interfered with natural birth. Now this I could live with. At least I felt like I had tried. And he would continue impressing me.
Obviously, the issue was that I wanted to be involved in the birth of my child. I wanted a birth story. One that I could tell myself, instead of one that other people had to tell me about. He got it. After he opened me, he turned the mirror, pulled her out, but only halfway. He waved her little arm at us and said, “Hi, mommy! Hi daddy!” He then asked if we had seen her before he pulled her out completely and moved the mirror. They did have to give her oxygen for a minute, but then she came straight to me.
I suppose it’s difficult for anybody who hasn’t been there to really understand the significance of what this doctor did, and why it matters. But every doctor you choose should be chosen with the same care and consideration you use when purchasing a home or a vehicle. The same considerations you use when you pick a college. Those decisions are made based on needs/preference such as school districts when you buy a house, gas mileage and payment amounts when you buy a car, what kind of engagement ring you will stun your partner with, and going to a college that offers a degree in your chosen field of study. Even your clothes are picked out according to your style, according to your needs, and according to your body size and type.
To shop for your favorite lipstick, underwear, and clothing, as well as your college, your home, and your vehicle, and then to just take the luck of the draw when it comes to a physician, would just be irresponsible. It’s probably one of the most important choices you will make in your life, especially if you have health issues that make medicine a significant portion of your life.
I no longer have a problem when people ask me this question, or even insinuate that I am Dr. shopping. I simply ask them how they obtained what they are wearing, carrying, or driving. Then I ask why anybody would be dumb enough to not shop for a doctor knowledgeable about your medical condition, and qualified to take care of you. It’s arguably the most important shopping you should do, because if you don’t have the right doctor to keep you alive, nothing else you shop for really matters, does it?
Things to Consider While Doctor Shopping
To better understand why chronically ill patients shop for doctors, these are some of the considerations we have to take into account, not just because we like it, but because our lives may depend on it:
1. Has the doctor heard of my disease?
2. If he/she has not, or has only heard of it, but has no experience, is he/she willing to learn?
3. Does he/she take your insurance?
4. Is s/he willing to take me on as a patient, after learning about the multiple and complicated medical issues that come with me? (Yes I have had doctors say they cannot see me because they are not sure how to treat me.)
5. Is s/he willing to deal with the insurance company when they have ridiculous requests like prior authorizations, even though we both think it’s ridiculous? Because without it, I will NOT get my meds. Yes I actually did have a doctor who refused to do these. While I understood his point of view, it left me in a no-win situation.
6. Even if the doctor seems qualified, is his/her staff equally qualified and efficient? The best doctor it’s not worth a hill of beans if you can’t get to him or her unless his or her secretary, receptionist, or office manager deems your need worthy of even asking the doctor.
7. Is he/she a team player? Unlike cancer patients, who have oncologists who serve as a sort of “primary” doctors for purposes of treating cancer, and regularly deal with teams of various specialists for different parts of the body and different treatments, people with autoimmune conditions have no such specialist. Our treatment comes through other specialists, or sometimes, a rheumatologist. While rheumatologists are supposed to be able to deal with autoimmune issues, many of them are much more focused specifically on rheumatoid arthritis and/or other osteopathic/arthritic issues. This has resulted in having to travel two to three hours to get medical care from a specialist in my particular disease. It is critical that my doctors communicate with each other and are not battling with each other over ego problems.
8. Do they have privileges at the hospital I go to? Because of the issue raised in number eight, I have found this to be key in getting some kind of a “team” effort. My two most important specialists are both the heads of their departments or the entire hospital where they work. This means they can access each other‘s records, they know who each other are and respect each other, and they communicate with each other about my care. Just to be clear about how important this is, I spent 10 days in the hospital with other doctors trying to release me against my doctor’s orders, even when he was the medical director of the hospital I was in! Had I not been more vocal and a stronger advocate for myself, I would’ve probably checked out without getting what my doctor needed to get my diagnosis confirmed. Therefore, having doctors with privileges at the same hospital ensures that we are all on the same page. It also protects me as much as it does the doctors.
9. Is the doctor for or against something that is controversial, that will influence his or her ability and/or willingness to care for you? For example, if one doctor puts you on medical marijuana, and you have to find a specialist, is that specialist going to provide the same quality care if they do not support the use of medical marijuana and they know I use it?
10. Does the doctor recognize you as a qualified person to participate in your healthcare? Don’t laugh. This is probably the most important question. It is also probably the most difficult one to find in a doctor. Just like in my own career as an attorney, I have found that when it comes to professionals, there are two kinds. The kind who believe they are there to do their job, and your job is to fill in the blanks and say “ok” to every cookie cutter question and answer, or the kind who believe nobody knows more about your body than you do, and without your input, their knowledge is not often going to be enough. This is both practically true, and psychologically true. If you don’t feel heard and valued, it’s not the right doctor for you.
Do and Don’t
DO NOT be bullied into believing that you are not worth shopping for when it comes to your medical care.
DO NOT be silenced when you want to participate in your care.
DO NOT be afraid to ask questions. Be afraid to NOT ask questions. Be afraid if your doctor doesn’t like you asking them.
DO NOT be afraid to walk out and not look back. Whether you are insured or not, you are more than likely paying this professional for his or her services. If they don’t meet your expectations and standards, know your worth, and walk away. A degree is only a degree. It is not a certification about any professional’s humanity.
DO your research. Is the doctor board-certified? Where did here s/he go to school? Where did they do their residencies and fellowships? (Does that seem like an unnecessary question? Try telling a doctor about a bad experience you had at a tertiary care center, only to find out the doctor did her residency there.)
DO ask direct questions. Ask the uncomfortable questions.
DO offer information that should be helpful, and make sure the doctor is receptive to information you provide. (I’ve seen doctors glance at documents and stick them in the back of a file without even looking at them. I have also seen doctors review them and discuss them with me. These doctors are still my doctors. Such a significant difference. It can mean the difference between life and death.)
DO respectfully challenge things you are uncomfortable with, while also recognizing that just as a medical expertise is useless without the patient part of the equation, your own knowledge is simply that. Different patients have different levels of knowledge about medicine. While you are an expert on your body, the right specialist is an expert on how to use that information in conjunction with his or her medical expertise to obtain the best result for you.
Am I Asking Too Much?
Does it seem like I ask a lot? I do. Is it fair? Absolutely. My career choice is also a professional one. While I am currently medically retired, and don’t know if I will be able to go back to practicing law at all, I know that what I expect from my doctor is nothing less than the standards I held myself to as an attorney. I was good at my job. I was great at my job. Because it wasn’t just a job. It was a career, and it was my passion.
Therefore, I know what I brought to the table as a different kind of attorney than what people were used to. I surprised other attorneys and judges with my candor and professionalism. Because of that, I will not shy away from expecting the same level of professional responsibility from other professionals in my life. I am asking for nothing more than the same work ethic I put in for my clients. Additionally, I assure you, I often met with and represented clients who had previously interviewed or been represented by another attorney. I guess they were attorney shopping. Somehow, I never heard that term thrown around the way I hear, “doctor shopping.”
If that’s a problem, I’m afraid I will have to plead guilty as charged! I have always and will always shop for, and choose any medical professionals I deal with based on my needs and their qualifications. If you ask me why I am doctor shopping, don’t be surprised when I respond with, “Of course I’m doctor shopping; the real question is, why aren’t YOU?!”
I lost my husband to metastatic melanoma skin cancer, which eventually spread to his lungs and brain, taking him from his two amazing daughters (and the rest of us). While it’s likely he got the cancer after a bad sunburn when he was 16, he never had the spot checked out. One day he was with me in one of MY appointments, and my doctor looked at him and told him to get that checked out because it was cancer. Needless to say, I got him in to a dermatologist within a couple of days. That’s when the nightmare began. He lived with the diagnosis from early 1997 through December 3, 2000, around 2:45 am.
During those four years, we did a lot. There was a surgery to cut the spot out of his cheek. This one was scary. His parents and I were there all day, and finally decided to go eat, after the waiting room rep urged us. We were not too happy to find out the doctor had come out to speak to us, we weren’t there, and she was not able to tell us what he said. It would be another few hours before we learned it had spread to his lymph nodes, and the incision went much farther than anticipated, leading to the extra hours of surgery.
The next major surgery was to remove a tumor from his brain. This one went well. Which is not to say it was easy. It’s never easy. You have to give up all control, lean on your faith, and pray those who DO have some control are successful, and guided by God’s protective hand.
I remember he was in the room one of two local police officers who had been shot had just previously been. His older daughter was six at the time, and she didn’t want to leave him. I still remember sitting on the steps outside the hospital, crying with her, waiting for her to calm down before I would drive home with her.
Whenever someone I know is experiencing things like this, things I can identify with, things that trigger my own reserves of anxiety about the situation, I feel almost as if I’m going through it with them. The same is true when someone loses a spouse. I went to a funeral for a woman I had never met, because our spouses were married and I went with him. I remember crying at the funeral as I watched the husband and kids being greeted by people, and nobody understudying why, since I didn’t know her.
What people don’t realize is this kind of trauma doesn’t go away. It stays with you. During those tears, I wasn’t mourning her death. I was looking at the people in front and thinking about what they felt at that moment. And just before. I locked myself in the bathroom before my husband’s service, and friends had to talk me out. I didn’t want to go. I don’t know why. I just didn’t. And when I saw our stepdaughter wandering by with tears, I snatched the opportunity, and took her to her room, where I stayed with her until it was over. Again, crying with her. She didn’t want an angel daddy. She wanted the dad who took her to school on his motorcycle. She was six years old. She doesn’t remember most of this, because she has blocked it out.
So I knew how much this family desperately didn’t want to be where they were. I also knew they wouldn’t want to experience the next few weeks. Or the next few months. Or the whole first year of firsts, or the even more traumatic second year, when it’s not expected to still be so significant for you. But also the moments where you realize, this is never going to be over. This is your new normal. This is forever.
The grief cycle is not kind. And the grief attacks are much more frequent in the beginning years than in later years. All of this, I knew was in their future. I knew what dad was walking those kids through and a lot of what lay ahead for them. I cried for them. My heart broke for them. I still put flowers on her grave at the cemetery my grandparents are buried, since it’s a distance and we don’t get to go often. I can’t leave without stopping by the other one to acknowledge the mom of these kiddos and send them a picture. They didn’t want a mom in on a headstone in a picture. They wanted the mom who was alive. But sometimes, the part of someone who is no longer alive has to live through you instead of for you.
Today a friend had to play the surgery waiting room game while her very young granddaughter had open heart surgery. I can’t explain it. Once you have been there, you can’t dissociate from what you know they are experiencing. I mean, you can, but like all things we dissociate from, we eventually have to deal with it in some way or another. I held my breath all day, imagining what the mom and dad must be going through at every passing hour. I watched the page they set up for prayers, waiting for an update, and praying with all I had that my friend wouldn’t be experiencing a tragedy in the middle of all of this chaos. It’s just too much.
The thing is, I didn’t realize I was holding my breath. I didn’t realize the level of anxiety I took on, again, not because I knew the child directly, but because I knew what the wait was like. There is nothing like it. It wasn’t until they said she was out of surgery and recovering in ICU with good vitals, that I found myself in tears, and realized I was literally holding my breath much of the day, waiting. I had dissociated again.
I realized there is a part of me that is still grieving my own experiences. In praying for my friend not to experience a tragic loss, I was reliving the waiting room all over again. It’s truly one of the hardest things to go through. You can do nothing except pray and wait. You can try to distract yourself with social media (wasn’t an option for me 20 years ago), or puzzles, or books… but you’re not really there. I sometimes wish they could just put the family to sleep, also, so we can just to sleep and wake up when it’s over.
But this is the part we, as surviving family members, have to carry. How many times had many of us wished we could have traded places with him, to take on his pain, his stress, and his sadness, even if it only relieved him of a little bit of the weight he was carrying. But we can’t. We can only wait, and pray. It’s hard. We want to be strong for our family member, so we hide our tears, and try to smile a lot. We cried in the car when he couldn’t see us. I cried at work. His daughter cried at school. We all cried all the time, but normally not in front of him.
We can’t carry what is someone else’s to carry, even when it’s too much for them, even when it’s not fair, and even when we desperately want to. Hospice helped me understand this was a need by family members who feel otherwise helpless. Helpless and at the mercy of the doctors, of God, of the nurses, and of anyone who extends some compassion when you need it most.
This… is the part we carry. For those few hours, they get to go to sleep, and wake up when it’s over. We don’t. It’s the only time in their lives that WE are truly the ones carrying the weight of it ALL. WE are told what to expect. WE are told when there is an update. We are told when it’s over, how it went, and even when they’re in recovery. Sometimes when they wake up, it’s a family member who has to task of updating them until the doctor makes it around, unless he had to leave after the surgery. Then it’s 100% on us to deliver the news typically only given to a patient by the doctor. That is a lot. It’s heavy.
But the thing about it is, this is our only chance to do what we want to do. We want to carry some small piece of the horrific journey for them. This is that chance. In the waiting room. The surgical wait. The surgical weight. For just this brief moment, WE can carry the stress for them. Looking at it this way, it was an honor to carry him for those hours. I would have carried many more if given the opportunity.
I had the distinct pleasure of experiencing the total loss of a home due to fire last year. It was my father’s home, not mine. However, because I lived with him for a period of time within the last few years, and because I’m currently living in an apartment where storage for extra belongings is limited, I did have some belongings in it that were lost to the fire. It’s a weird thing to experience. You can’t begin to remember everything you had, until you remember something you need, and think to yourself, “Oh, I need to go get that from…” “Oh yeah, it doesn’t exist anymore.”
My father was put up in a long term hotel, which was pretty nice considering it was summer, and they had a nice pool, as well as daily breakfast, and dinner five days a week. It had an extra sofa bed in the living room, and since there were circumstances that involved the safety of my daughter and me, we stayed with my dad at the hotel, which was nice for the kiddo and for me, because it was almost like being at a resort for the entire summer, which is how long it took to investigate and process the claim. Thankfully, he had the best insurance around as a result of his military service. They pay quickly, and substantially when there is a valid claim.
While there, I registered to use my phone with an account to access the doors, rather than keep track of a card. Because I had to stay logged in, I noticed the account go through stages as our stay was extended. First bronze, then silver, then gold, then platinum, and finally diamond. With each new level, came a few little perks, like being able to “gift” one of your free nights to someone, or getting a free room upgrade, or other little goodies. It was nice. I felt like I was “seeing how the other half lives.” I imagine this is much like the “miles” people collect when they are frequent fliers. I am only a frequent flyer at medical facilities and through medical insurance.
Today I spent one my usual hour-plus long calls with my medical insurance company on the phone. Insurance is one of the ugliest beasts anyone with a chronic or serious medical condition has to do battle with, in addition to all of the other battles we face, aside from the actual medical condition itself, which we barely have time to deal with while dealing with all of the other gifts that come with it. Insurance should technically be considered a “side effuck” of our medical conditions.
Because of the pandemic, I began having my meds delivered, rather than spend the hour-plus I used to spend sitting at the pharmacy, where I’m on a first name basis with every employee and they have my information memorized, as well as my medical condition and many of my medications. In fact, my particular local pharmacy is excellent at catching things before doctors even catch it. I’m so grateful for them, and I’m certain they have saved my life on at least one occasion. Before I found out they were starting to deliver locally, I transferred some of my prescriptions to my insurance company’s mail order program. When I found out they could be delivered locally, I let them do the rest, as I really liked the service provided by my local pharmacy.
Today we’ve been trying to sort why the mail order service through my insurer has sent me varying “co-pays,” depending on whether it was texted, stated verbally by a representative, or run through the local pharmacy, all producing a copay for a medication under an insurance plan that is supposed to require no copays for necessary and “formulary” medications. (Formulary in this case means it is covered under a list of specific medication formulas.) While doing so, they explained this concept they have where patients/clients/members are regular members, and after a certain point, they are covered under “gap coverage,” which is supposed to require them to pay a little bit more of their part than the regular member. However, if you pass yet another level, you fall under “catastrophic coverage.” Under this tier, you don’t pay any copays. They cover 100% of your medication expenses. As long as they are under their formulary list or considered medically necessary after you have shown you can’t take their preferred formulary drug.
I have to say, it was a little bit of a shock to be discussing my case as being “catastrophic.” It got me wondering who came up with these names, and why. These are the little things that make people like me question our existence and the value it has to society. Why not treat us like loyal customers? Because really, we are. We are the MOST loyal customers they will ever have, as we don’t really have a choice about needing insurance. Most of us, anyway.
What if instead of becoming a catastrophe, after I passed a certain level, I was considered a “gold” level customer or client? And it came with a free box of tissues or a $5.00 coupon off of my next “purchase”? And what if the most loyal customers, those with severe chronic, terminal or otherwise extreme medical conditions, were given the top tier of platinum or diamond level members of our insurance plans? With a free item from the OTC items worth $25 or something?
It would give me just one way of not feeling like a complete drain on society, on my family, and on the very companies I support due to my health condition. I recently read a fantastic article about changing the way race is viewed in history books by changing the word “black” to be capitalized when referring to race: “Black.” It was brilliant! Words have meaning. Sometimes even though they are being created to reflect the business they are engaged in, sometimes they forget the reason their business exists is because they have “customers.” Without people like me, they wouldn’t even exist. We carry them. My $10k medication delivered, refrigerated, to my door monthly, helps carry them.
I am currently awaiting a return call to see if the last representative I spoke to, who is probably somewhere between the 11th and 15th person I’ve spoken to regarding resolving this matter, to see if he was able to resolve it by constacting my local pharmacy and other resources. Everyone agrees it should be covered, but nobody can figure out why it isn’t. This is no surprise to me, but I am reaching the level that is unconscionable to me, where my mental health takes priority and I have to agree to spend what little money I have available on disability paying for a medication I know I’m not supposed to be charged for. Because it’s easier to pay and deal with the financial loss, than to keep letting this affect my stress, which in turn, triggers flares and makes my health worse, making me even more dependent on this poorly oiled machine that does not work in favor of its best customers/clients. We deserve more.
So from now on, when I hear “catastrophic,” I will equate it with “Platinum.” With a capital P. I will also reward myself. It’s not the same as being valued by the company I’m supporting, but I deserve it, and giving myself credit for things when nobody else does has become a necessary part of living with a chronic illness that affects every part of my life.
So let’s raise a glass to all of the Platinum members of our medical insurance plans! May we raise a glass, raise our standards, and raise our value! We matter, too! We are NOT expendable.