I’m a 46 year old mom to 3 kids and grandma to one, a military brat, a music lover, a widow, and an involuntarily retired attorney who got smacked with the most sarcastic and ridiculous disease on earth, completely changing the future I had worked so hard for, and the plans I had for myself and my family. I have a 26 year old stepdaughter who has my 8 year old granddaughter, along with my 21 year old daughter and the baby, my 12 year old, who I’m thankful has grown up just in the right times that my illness doesn’t put her in danger.
My condition, Churg Strauss Syndrome (CSS), or Eosinophilic Granulomatosis with Polyangitis (EGPA), as it is currently called, is sarcastic and ironic, just like I am. It is an autoimmune vasculitis that causes inflammation, and one of the primary symptoms is an intolerance to nonsteroidal anti-inflammatory drugs (NSAID’s). And that irony and sarcasm just carries on throughout the entire journey. One thing it is not: boring.
It is diagnosed in only one to two out of every million people, and was featured on the fifth episode of House MD, if that tells you anything about how rare it is. It is most evident for me in the way it made my asthma go from completely controlled to uncontrolled, no matter what we do.
I’m currently on a low dose of chemo and a biologic in addition to prednisone, and trying to wean off.
My previous life was being a family law attorney. I try to assuage my guilt about my daughter not seeing me as a professional working woman by volunteering as much as I can.
People always tell me I should write more, so here we are. Maybe my escapades can make somebody else laugh, or make someone feel less alone if they are dealing with similar circumstances. If nothing else, it will be something for my kids to be able to read later in life to remember who I was.
Until then, I plan to live the hell out of every single day I am given. And laugh as much as I can, when it won’t cause an asthma/coughing fit. I truly believe laughter is the best medicine. (When it doesn’t cause a deadly asthma attack.)
This is an excellent blog post about something I hadn’t put much thought into, having had many urinary tract issues as a child and being used to being exposed. But it hit home when I read and thought about it.
There is a lot to be said about perceptions and it is incredible the difference when you’ve had the opportunity and misfortune to sit on the opposite side of the desk than you’re accustomed to.
Going from attorney to client, doctor to patient, or even from one profession to another, where you are used to being spoken to, seen and treated with a level of respect, and suddenly find yourself at the mercy of someone else now filling those shoes.
I always tried to go in asking clients what they knew, so I could figure out the best way to explain something. When you’re used to understanding and explaining difficult concepts for a living, and suddenly you know everything you’re being told is being dumbed down, it is infuriating!
I’ve often said the higher you climb, the harder you fall. Nobody ever wanted to be a patient when they grew up. The doctors and medical staff who remember this do very well, and those who don’t could learn a lot from them.
I think every professional should have to spend a week on the other side of his/her respective desk. Just for some perspective and understanding.
Please read the following post, which really explains this idea perfectly.
Recently, I had to disrobe completely for a scan. I was already wearing a hospital gown that I’d been given after I tried to stay in my own clothes …
As this weekend has approached, I have watched the 2021 Valentine’s Day challenge. I get it. Rather than going out and risking people’s lives, people are sharing pictures of past “dates” and “events.” And with this holiday, we come full circle into a year of Covid.
However, I wear several different hats. While I am divorced, I am also a previously widowed wife and mom to one of my late husband’s kids, one of our own kids, and one more with my ex-husband. Losing someone at a premature age is not the same as a divorce.
While I see one set of questions being asked on my main social media page, I see a different side of questions being asked in a sub group of women who lost a spouse at a young age. “When did you lose them?” “How long WERE you together?” Some of them have been there as long as I have. 20 years is a long time. But as anyone who has lost a spouse knows, this kind of grief is never completely over. The love never ended. Life did. It’s so different.
I scrolled through some of the posts. There are others who are veterans, like I am. There are some who are halfway as far as I’ve gotten. And there are those who lost somebody yesterday, last week, last month, or last year. Trust me, most of the first three years, at least, remain a blur for the rest of your life.
That’s when I realized something. One of the hats I wear is being a professional patient with a chronic illness and a looming knowledge that I could follow in his footsteps in a flash due to my own medical condition. I’ve lost a friend who has the same condition, as rare as it is. I’ve had friends come close. I’ve helped a friend grieve somebody they lost to Covid. Now I’m trying to support her as she has become a long hauler, sick longer than two months now. And I know people who have lost several family members.
I’ve had to learn how to come to terms with something called disenfranchised grief. losing people you have gotten to know very well, but mostly online, so that you feel like you aren’t part of their real life, and aren’t entitled to grieve. I’ve gotten used to that. Although I have to say, I wasn’t expecting the last one. And it’s different losing them to Covid with a vaccine on the way.
The thing I noticed suddenly tonight is that while I am used to losing members of my medical support groups, I failed to notice that my support group for people who were widowed at a young age has been growing at an alarming rate. It seems like the obvious, but it’s just not something I noticed. Until now.
So if you are posting the Valentine’s Day challenge, by all means, do it! Milk every second you can out of your time with the people you love most. Nobody understand that better than we do.
But also take a second, if you don’t mind, and say a prayer for the many people who are spending this weekend alone because their everything, their person, their reason for breathing… wasn’t one of the lucky ones to survive this last year.
Maybe say another one for those who are waiting alone at home, hoping NOT to get a call about a last video with their partner.
And maybe one more for everybody who has lost a child, a parent, a grandparent, a sibling, aunt, uncle, cousin, niece, nephew, a close friend, or other loved ones.
And maybe one for the kids who can’t go back to school without endangering their own parent, and those who have to go back to school, and may have to live feeling guilty for tragic results.
And maybe one more for everybody who has lost a colleague and thought it could have been them.
For those who never got to say goodbye because their parents or grandparents were in a nursing home and didn’t survive.
For all of the people working, whether you are a front line medical worker or mopping the floors in the schools. Whether you are a police officer who has fought the virus, violence and hatred, or a person who is high risk because of race and being disparately impacted, or socioeconomic status.
For those who have been vaccinated and are praying that it works, and for those who are desperately waiting for their turn to get it, and for those who are choosing not to because they are afraid of the risk of the vaccine than the virus.
Whether you are a Republican or a Democrat or an independent or a libertarian, or just fed up with what we have been through politically, especially in the United States, as if a pandemic were not enough.
Just say a little prayer for people struggling through this weekend. I am grateful for the fun day and week I’ve had with my kids. But not everyone was lucky enough to have kids. Some are homeless without their partner in a world where jobs are scarce and crashing with a friend is a much bigger ask than in previous years.
Then… ENJOY THE HOLIDAY! Every minute of it. Even if you can’t go out or do something that has been a tradition. Nobody is guaranteed tomorrow. If the last year taught us anything, it’s that.
Make today count. Make every day count. Before you run out of days to count. You aren’t just doing stuff. You are making memories. Memories that will carry you if you find yourself walking a path nobody should ever have to walk. Keep making them, and then make more! Make them every day until you run out of days, even if you make it to 100 years old together. Never stop making them. Because those memories… the memories you’re making… they are everything.
I have a support group for the disease I have. It’s online. I have been a part of in person support groups. For example, when I lost my first husband to cancer and I attended the parent support group while our six-year-old attended the children’s support group. I can’t say enough about how grateful I am for what they did for our family at the time.
Fast forward 20 years and the world is a completely different place. Even pretending it’s not 2020, even as of last year, I had access to not only an online support group for my disease, but support groups for different areas such as people taking specific medications, or people with certain specific presentations of the disease. Even for people that have cancer in addition to the disease.
The value of these support groups is probably not quite appreciated by most of the people who have them. At least not in the way I do. You see, 20 years ago I lost my first husband to metastatic melanoma skin cancer that spread to his lungs and brain and took his life at the age of 28, with a 20-month-old baby and a six-year-old daughter left behind.
We had America online dial-up Internet. Most people today don’t even know what that means. It means we had to listen to a dial tone, a phone number being dialed one digit at a time, and A lot of very weird sounds every single time you logged on, and several seconds or minutes between pages. Complicated pages could take several minutes to load. I remember dancing baby that took about an hour.
I did happen to find an email support group for stepparenting, and it was the first I ever joined. But I was more inclined to use the Internet, which was new, than Josh was. He also never went to an in person support group. So, in my mind, he was alone. And you have no idea how often I think about that. I try to imagine what it would be like if I didn’t have anyone to text, message online, ask questions to in a group, or even search archives and pages for stories similar to mine, so I didn’t feel so alone.
It breaks my heart, and reminds me how lucky I am to have online support groups today. Recently, we lost one of our brightest members (ironically within hours of the 20 year anniversary of my late husband, so close that I had a candle lit for both of them at the same time). He was intelligent, well read, an incredible researcher, had medical expertise, had cancer in addition to my disease, and was one of those people who was always there for anyone who needed him, whether he knew them or not. I was the beneficiary of that help when I was in the hospital for 10 days and started to lose my mind. He was on the phone with me almost immediately and already had the phone numbers of specialists in my zip code.
The support group, which the family knew was a big part of his life, was invited to attend the funeral via video using zoom. I’m not sure we would have even had this option, were it not for the virus. But then, if it wasn’t for the virus, maybe the funeral wouldn’t have been this soon.
Nevertheless, the connection so many of us feel two people and support groups is stronger than some of the connections we have in real life. Behind a computer screen, we feel safe enough to share more, feel more, cry more, scream more, stand up and clap and dance in agreement more, and basically we are more free to be our authentic selves, when doing so in person may not be so easy. So there are things we share with online friends that we would never share with a person who lives in our lives.
I did learn that there is a word for the grief that goes with someone you knew only virtually, or in some way other than being physically present in your life in some way: disenfranchised grief. I’ve written about it before, but if you don’t know what this means, it’s worth looking up.
Because of social media, because of the Internet, we have something my late spouse never had. A community of support. Whether it’s emotional support, sharing information about different treatments, side effects, and experiences, just venting once in a while, or even sharing a funny meme or inspiring quote, there is always someone there. At almost any hour, somebody is awake and will get your message. And even a little hug emoji without words may be enough to make you feel less alone and how my late husband must have felt without that kind of support.
One of the most traumatic memories for me is when he asked me if I would allow them to cut into my brain if I were him. I told him that’s not a question I can answer for him. I would support either decision. And I made sure he knew that, and that he could talk to me about it. But I couldn’t make that decision for him by telling him what I would do. Nor did I know what I would do. I can’t help but think now that this is the kind of question he could have discussed with an online support group that had been in his shoes and could identify with the question. Someone who felt qualified to give him a better response than what I could.
So I am grateful. So very grateful that while it was too late for him, I have been able to benefit from the support of online friends and support groups, and I never feel completely alone. My world is so much larger, and even my perception is changed when I get to add global perspectives by learning how other countries use different medical systems. I do still wish I could go back in time and give that gift to my late husband. But I’ll take what I can get.
To my Internet friends and support group friends, thank you so much for your support, and for being there anytime you happen. In a life where my condition could have meant almost complete solitude, I was given the gift of you. And I will never stop being grateful for you.
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…