I’m a 45 year old 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 11 year old, who I’m thankful has grown up just in the right times that my illness doesn’t put her in danger.
They have all suffered to some degree due to my health, but the older two weren’t strangers to that, since we lost their father to melanoma skin cancer that spread to his lungs and brain. Now I am left being a professional patient, and knowing what my late husband went through. Likewise, I’m terrified to leave the one daughter who won’t have a parent left, alone in the world.
I have learned which family isn’t family, and which friends are, and I do feel hope and confidence in the few people who already care about her, and I know she will never be alone. She’s a fighter. Like her dad combined with me, which I’m not going to lie, is a bit terrifying at times.
I was approved for social security disability due to a very rare autoimmune vasculitis, Churg Strauss Syndrome. It is diagnosed in only one 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. In connection with this condition, which often occurs in people who have had a lifetime of allergies and asthma, and been dependent on Singulair and or prednisone, I also have severe asthma with refractory bronchospasms (meaning it does not respond to most medications), hypertension (which becomes pulmonary hypertension during a flair), and most recently, drug induced “pre-diabetes,” if you believe in such a thing. (I consider that the equivalent of being a little bit pregnant.)
It has been an incredible journey, both from the beginning until diagnosis, which took approximately three years, from the time I knew what it likely was. Seven years from when the first symptoms began in 2008, and since diagnosis, learning to navigate the terrifying world of government medical insurance coverage through Medicare, and trying to find qualified physicians who are willing to take me on. i’ve had to learn quite a bit about medicine having such a rare condition, which makes me a difficult patient. But my best doctors are the ones who are not offended by my knowledge, and appreciate that I understand, as well as being willing to help when I want to understand more than the average patient. I asked more questions. I make more suggestions. But I am so grateful to those doctors. They have saved my life more than once. I had four surgeries for my sinuses in 2009, 2011, 2012, and 2015. Whatever the ENT did differently during the last surgery seems to have helped significantly and I have not had another one. I still get the infections, but at least the polyps have slowed their growth. I died once. Many years ago. Due to an allergy attack that turned into life-threatening anaphylaxis. Nobody even told me my heart had stopped. I was looking at medical records later and noticed one said cardiac arrest. It seems like that’s something they should maybe tell you, right?
My condition is sarcastic and ironic. 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. Especially when you are in my life, and the adventures that nobody can ever believe happened to me. Follow along, and you will begin to understand eventually. A sense of humor is definitely a requirement. If you don’t have one, this is not the blog for you.
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 at her school. I can’t get fired from that, and after volunteering one day, I can take another day or two to recover.
Rather than posting novels as Facebook statuses, I decided to take a stab at blogging. It’s always an adventure. 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.
“With a heavy heart I’m writing to let you know that *Amy passed away Monday morning peacefully in her sleep.”
Name changed for privacy
You know those reality TV shows, where there is a picture of each member, and as they are voted off of the show, one of the pictures turns gray every week?
It seems like such a ridiculous comparison; being booted from a TV show for entertainment, and someone losing their life to a ridiculous and heartless disease. Nevertheless, the connection is there.
I’ve already lost count of how many of these messages I’ve read. It’s the message that comes up in your support group when someone is taken from us too soon. No matter how many times it happens, you’re never ready, you’re never expecting it, and you’re always shocked.
I’m pretty sure everyone has the same reaction. It is grief, after all. It has a pattern. A cycle. If you’re familiar with it, you know that it doesn’t really end. You cycle back through it. Rinse, wash, repeat. It does get a little bit easier as you process the same loss over and over again. I tell people who ask that you will never forget. It will never go away. Anyone who tells you it will is lying, in my personal opinion. What will happen, however, is it will get easier. You will start to remember with more joy than tears. It won’t punch you in the gut as often. It’s a little less violent.
After seeing a version of this reflected in a humorous way on the show, Jane the Virgin, I am convinced many of us go through a full mini-cycle of this when we learn about these kind of deaths on a consistent basis.
The Kübler-Ross model of grief represents five stages of grief: denial, anger, bargaining, depression and acceptance. I think this leaves out one initial stage. It leaves out the stage of shock. It seems like a rather important one to me, because it describes what you’ll later refer to as a trigger. That first moment when you learn of a death, and the world stops for just a moment.
It’s not like anything else you hear in a day. Someone’s life is over. Many other lives are affected. Some more so than others. When it comes to illness, especially a shared illness among people in a support group, it’s not just someone. It’s someone like you. It could have been you. So the world stops. You stop.
For a moment, sometimes a very brief moment, and sometimes for a lot longer, there is nothing. Only shock. Only the words. You don’t process them. You just understand what they mean. I learned in therapy that the word for this is dissociation. At least, this is my first reaction. And I suspect this is the reaction people describe as shock.
It’s the same feeling you have when you have a grief attack. That’s what I call a Moments when all of this bubbles to the surface and it feels like it just happened. Even 20 years later, it can feel like yesterday. It just takes a trigger. Something that reminds me of that moment, and it’s like I’m transported there. It’s the same feeling of shock every time.
I recently received news that somebody who is critical in my life was diagnosed with a very dangerous disease, that could end in death. I knew I was not reacting correctly. But I went about my business, took care of some of the related issues, and it wasn’t until that evening, at least 12 hours later, that I broke down and the reality of what was at risk hit me. I wanted to call my old therapist and say, “I get it now. I understand dissociation now. To the point that I know when it’s happening.”
Today when I received news that someone in my support group had passed away, in my mind, I saw the name fading. Knowing people through a support group, especially when it’s for a terminal illness or one that has no cure and can become terminal at any moment, means you get very close very fast. You learn to trust people you have never met in real life in a way that you don’t trust anyone in your “real” life. Which makes those people very real.
Sometimes you don’t even have a face to associate with a name, but you know the name very well. You get used to seeing the same names responding when you post about serious and complicated issues. You start to associate those names with a feeling of being cared for. Of being understood by somebody who gets it. For me, my condition is only diagnosed in one person out of every million per year. I’ve never met anyone else in person that has my disease. So the only people who “get it” in my life ARE those names for whom I have no face to connect. Other than a profile picture or pictures shared since I met them. (This might be a good time to mention that sick people don’t often like taking pictures of themselves. So it’s probably not a surprise that most of the profile pictures are not actually pictures of people.)
After hearing or reading that somebody has passed, I sit in disbelief for a minute. However brief, even if I don’t recognize the name at all, I still experience that numb initial moment of shock and disbelief. I question whether I would’ve been ready if today had been my day. What if I’ve been meaning to do that I still haven’t done? This many people later, why haven’t I done them?
Then there is, for at least a moment, a feeling of denial. No matter how many times it happens, there’s a little person inside of you that screams, “NO!” Every single time. Stage one of the five stages. Or stage two if you’re counting my extra one.
And then it’s sort of feels like I experience the rest of them all at once. Anger, bargaining, depression and acceptance. It’s almost as if we live in a constant state of grief once you enter this world, and each time you learn about another death, it’s just a surge of all of these emotions. But somehow, still always, shock.
That moment where we realize one of the people who entered this game in reality just got… eliminated from the game. There is silence. We all entered together. We’ve all had a core experience in common. It has gotten real many times. We’ve seen this happen before. We all know this is going to happen. And happen again. And again. And again. And still again. We all know the next one could be us.
And then we have to go back to life. Knowing that some people are not getting to go back to life after this. We have to keep moving as if everything is OK. Please understand that we carry those gray pictures with us. And they pile up. You start with one, then you have a few, then you can’t remember how many you have. But it’s a wall. It’s a wall in your mind with profile pictures fading away… much faster than they should.
If only it was a reality TV show that would end with the players back in the game of Real Life.
22 BLACK LIVES LOST TO GUNFIRE SINCE I ATTENDED LT. DEBRA CLAYTON’S SERVICE WITH MY DAUGHTER IN 2018. THEIR NAMES WONT RECEIVE A HASHTAG FROM MOST OF AMERICA BECAUSE THEIR BLACK LIVES DONT MATTER BECAUSE THEIR BLACK SKIN WORE A BLUE UNIFORM.
LT. DEBRA CLAYTON WAS KNOWN FOR HER WORK WITH CHILDREN AND SHE WAS ADORED BY ALL WHO KNEW HER. SHE WAS WITH THE DEPT THAT PRIMARILY RESPONDED TO THE PULSE TRAGEDY. IT WAS THE LAST LEO SERVICE I’VE ATTENDED.
I wanted to repost this amazing article written by a friend because it really describes a reality I deal with every day. For people who think that sick people who are disabled or sitting at home just enjoying not having to work, this is what we deal with every day. We don’t get a single week off. Every day there is a doctor to call, a lab to get done, an insurance call to make, a medicine to pick up,I wanted to repost this amazing article written by a friend because it really describes a reality I deal with every day. For people who think that sick people who are disabled or sitting at home just enjoying not having to work, this is what we deal with every day. We don’t get a single week off. Every day there is a doctor to call, a lab to get done, an insurance call to make, a medicine to pick up, and that’s all without counting the time you spend actually being sick, which we often don’t have time for.
I’m re-posting this on my blog as well as in support groups for my specific condition. Many people with my condition also suffer from cancer. But these tips are definitely universal. And they are especially appropriate if you are a Type A personality, and struggle with your inner Karen when you are being ignored, patronized, or just plain treated like you don’t matter. I will be printing this list to remind myself of things I can do besides snapping someone’s head off.
I hope someone else finds it as helpful as I do.
Some of you may remember the posts I’ve written about how I often feel dehumanized at the hands of the American Healthcare System. Looking back, I …
Posted by a friend who knows what to do with her privilege, Kayli Carter, on Instagram, and I couldn’t agree more with what she said.
Maybe there is a reason Trump thrust the rights of GLBTQ people into the forefront right on the anniversary of both National Loving Day (remembering the landmark US Supreme Court case Loving v. Virginia, decriminalizing interracial marriage) and the anniversary of the horrific mass killing at the GLBTQ club Pulse… (a straight up, all out, blatant attack on LOVE in both cases) at the same time as the biggest movement against racism that has existed in most of our lifetimes. Independently, both groups have struggled for… well… forever.
But what would happen if the black and GLBTQ communities (the ones who don’t already co-exist in both) got together? And what if the black Latino and Latino POC communities joined them? And the women who don’t want to be paid off to be quiet about abuse? Together, that’s one massive group of people.
Together, it would most easily be possible to take down the greatest threat to humanity I’ve ever seen: the Orange Gruppenführer. Together, we could show the grand Trump that America is only great without him staining the Oval Office and our place in the greater world. The only way Trump will make America great, is by exiting, stage left. ￼Enough is enough!
Please read this amazing post by a beautiful black trans woman and her struggle to matter.
“If all lives matter, then get out here and HELP ME MATTER!”
2020 is truly giving us an Oscar worthy performance. From the plot twists, evil villains, and fallen heroes, at every turn, I keep waiting for the camera to showcase a new scene in what has become the thriller of some of our lifetimes. It seems like a great epic film, a mini-series even, with each month revealing more and more about the cast of characters assembled.
It is so eerie to me that in June of 2020, we are viewing many topics on our screens: a corrupt president, Pride month, the murder of innocent Black people, and a worldwide pandemic. All at once. I don’t think even Stephen King could have pulled off such an epic feat.
In my 28 years of life, I’ve seen life through three different lenses:
This is an apology. It’s an apology to all black people. I’m apologizing because I’m sorry and embarrassed about some of my past behaviors.
I never considered myself racist. I’ve never picked my friends based on the color of their skin. I have always had friends from every race and ethnicity. Being a military brat virtually ensured this. I have stood up for people in all kinds of minority classes, as a child, as an adult, and as an attorney.
I thought that was enough.
I am a police supporter. My father is a retired military police officer. My first serious relationship was with someone who became a police officer while we were dating, and I spent a year and a half raising his child with him. I married a police officer and had a child with him, who I’m raising right in the middle of all of this mess. (Later divorced, but that’s a different story.) I still have many friends and people I care about in law enforcement. Photos like this one bring me to tears every time.
Until now, I’ve spent the majority of the last decade responding to every incident of police brutality (or perceived police brutality) jumping to the defense of police. I understand that side of it. I understand the split second decisions they have to make, and I understand that they don’t have time to even process whether or not to make a racist decision most of the time.
What I was missing is that it was never about any specific black person or police officer. It was about racism. And on that issue, I am no expert. Racism is dangerous across the board. But what makes it more dangerous in a police officer is the assumption of innocence on the part of the law enforcement officer, and the license to use force that would otherwise not be legal, and to not have to answer for it until later, if ever. I actually saw a police officer asking why people filming didn’t intervene. 🤯 Seriously!? As if he thought people could’ve intervened without being killed themselves, being arrested, and probably convicted of violence against a police officer. If they did what they did to a suspect, what would they do to a civilian trying to pull them off of the suspect? And then the police would have looked justified in what they did to Mr. Floyd.
I didn’t understand it was less about blaming law-enforcement, and more about seeing racism. Until now. Seeing four…not just one… but FOUR police officers kneeling on a handcuffed man’s neck until he stopped breathing for almost 9 entire minutes was my breaking point.
Then two things happened. First, someone posted a video that showed Jane Elliot asking a question that “left a [white] audience speechless.” She asked how many people in a room would trade places with somebody who was black. She asked the question twice, and nobody raised their hand. Then she pointed out that nobody wanted to live life the way black people live their lives because we can see that it isn’t good or right, yet we allow other people to be treated that way. Why!? That is one of the most profound questions I have ever heard. https://youtu.be/YTOierm0P4Y
Then, someone who is responsible for a lot of good in the world posted in a group I belong to, and believe wholeheartedly in, a “listening.” She asked for people of color to say what they wanted to say, and said, “We are listening.” Another friend posted a similar sentiment on her page to simply hold space for people to post what they felt and took it a step further by asking white people to not comment. She asked people to take a look at themselves if that made them uncomfortable, and question why that is.
That was the moment. That’s when I got it. It’s the shutting up. That’s the part I wasn’t getting right. It’s not about a conversation, or a debate, or a winner. Its not about being right or wrong. It’s about acknowledgment. It’s about letting people share their experience and not questioning it. Because it is their experience, and nobody has the right to question someone else’s experience. And they want to be heard. So my job is to shut up and listen. With no agenda, no reply, no opposing viewpoint, no alternate hypotheticals, no rationalizations… Nothing except acknowledging and validating their experience, and being willing to stand up for them and with them UNTIL IT STOPS.
So there are some things I need to change. Maybe some of them are things you want to think about as well. Maybe you’re shaking your head at me and saying, “Well, it’s about time!” I am sorry. I’m sorry it took me this long. These are only three of the most important things I know I have done wrong, and which I will change.
Saying “All lives matter.” I was coming from a place of supporting law enforcement officers who had been killed. Meaning both of the ridiculously sad and unnecessary killings matter. But again, the issue here is racism. That’s why I never understood why my comment was offensive. As I saw someone explain, to say “all lives matter” would mean that black lives are included, which would mean there was no issue to begin with. A better analogy was that it’s like saying that all houses should be sprayed with water because one is on fire, rather than spraying the houses that are on fire. The issue is racism. “Black lives matter” does not mean “ONLY black lives matter.” It means black ones SHOULD matter AS MUCH as all the rest. I get it now.
Responding that there are “good police.” We know this. That doesn’t excuse the bad ones! Until bad ones are held accountable as often as they should be, how are people supposed to feel safe around them? Unfortunately, the bad ones make it worse for the good ones. This is why the good ones need to work harder from THEIR positions, to eliminate corruption. Good police mean nothing if they aren’t there when the bad ones kill innocent people, or they don’t feel confident and secure enough to intervene and know they will be supported by their agencies. Responding to a specific injustice by saying “there are good police,” is almost invalidating that the injustice took place. If someone says their parent died, you don’t reply by saying, “Well, not all parents died.” How would that help?!
Replying at all. This is an issue for me in general. Feeling like I have to respond to everything. I don’t. Or at least I don’t have to rationalize it. Sometimes I just need to acknowledge that something exists, and just sit with it. Sit with a person who is hurting, and just support them. Even if I have an opinion or a response. When someone is discussing these sensitive issues, they are seeking support and validation. You can’t listen if you’re busy formulating your “response” (argument).
The last of these points was clarified for me in part of another article that discussed “private policing.” I had never even considered this concept prior to reading it last week. The problem is when white people correct, critique, compare, advise, or otherwise take it upon themselves to offer some kind of “instruction” to black people much more often than they do white people. The fact that I didn’t even know this was a thing makes it likely I have done this without knowing, as I do believe much of racism comes in the form of subconscious bias. https://www.huffpost.com/entry/police-violence-black-community-activism-ally_n_5ed01d2ac5b6b6261ab53962
One of the issues I am the most passionate about, probably due to being an attorney, is sentencing disparity. Studies repeatedly show that black people are convicted and sentenced at much higher rates than white people for the exact same crimes. I do not think people sit in jury deliberation rooms and decide someone is guilty or not guilty because they are black or white. However, when they are undecided and they decide to just trust their gut, I think most people don’t realize that their gut is biased.
Another friend recently posted a study done by Harvard that I have often referred to as well, which allows people to learn about their own hidden bias. Take the test and find out how you score. Read about hidden bias and then select “race” from the list. (You can also test for hidden bias when it comes to gender, age, sexual orientation, etc. Bias and bigotry comes in all shapes and sizes.) https://implicit.harvard.edu/implicit/takeatest.html
I am grateful to everyone who has tolerated me for all of the years it has taken me to finally “get it.” I am especially grateful to my black friends who have so graciously excused or understood my behavior and that it wasn’t intentional, but rather a lack of understanding. There is always room for growth and learning. I’m grateful for such an important lesson in life, for learning it in time to help me parent better, and for having time left in my life to make changes and hopefully become a true ally.
I’ll close with the link and lyrics to a song that truly represents the current times, and how critical it is that we stand with each other.
“We, the [Parties], of the United States, in Order to form a more perfect Union, establish Justice, insure domestic tranquility, provide for the common defence, promote the general welfare, and secure the blessings of liberty to ourselves and our posterity, do ordain and establish this Constitution for the United States of America.”
The Constitution for the United States of America
What? Is that not what it says? Wait… It’s “We the PEOPLE,” not “We the PARTIES”?! 🧐
We live in times where nothing can be discussed or decided without making every issue a blue or red issue. Left or right issue. Rich or poor issue. Have or have not issue. Privilege or discrimination issue.
It should be no surprise to anyone that there is a debate about opening the states back up, and different states are going at different paces, with a definite leftist/blue identity leaning towards staying closed, and the rightist/red identity leaning towards reopening.
I have been exhausted by political parties for years, and I left mine to become independent for that reason. This pandemic and the reaction to it has been all of the evidence I need to know I did the right thing. Until people stop looking at this as a political issue, and start listening to the people with medical degrees, since we are discussing a medical issue, it’s like we are in kindergarten and we are being taught to read by being given numbers.
The medical opinions should be provided. And they should be provided independently of any concern about the financial well-being of the country. Working from that, the government needs to do whatever it needs to do in order to try to manage the financial devastation. The fact that there is financial devastation does not change the medical facts.
Here, in America, that’s not how it works. Instead, we remove medical professionals from meetings, remove them from their jobs, remove them from public sight and earshot, while everybody screams and cries and stomps their feet at the other side making wild accusations, usually directed at a political official from a different party.
The struggle is real… For everyone.
It really seems like there’s only one way to resolve everything when it comes to reopening. Here’s what we have.
Some people think it’s time to re-open and some people don’t. Those who think it’s time to reopen fear for the collapse of the economy. And for the losses of their income, homes, and life’s work/careers. Some worry about mental health issues, and that being quarantined for too long it’s going to result in increased suicides. I can’t argue that fact. These are valid concerns. I’ve seen some measures put into place to help for people who need help due to depression and anxiety caused by this.
Asking people to stay home to protect everyone else, especially elderly and immunocompromised people, poses a very real risk of financial ruin, depression and suicidal inclinations for some people.
But asking elderly and immunocompromised people to go back to work too early, poses a very real risk of death or permanent disability.
Those who don’t want to return yet fear for their lives, and the lives of their children, their loved ones, and even people they don’t know. If they are forced to return to work, they return to an environment where we have seen report after report after report of people who simply don’t tell people they are sick because they don’t want to be quarantined. We take the biggest risk we’ve ever taken, and some of us will lose that battle, and each time, another family will grieve someone before they should’ve had to. That’s not a small ask.
So is there a viable solution? I think I know of one.
Why can’t we do both? (Test Run)
It doesn’t appear science is going to answer the question. But maybe we’re just not applying science in the right way. Some people are very hands-on. Maybe it’s time to let them try a lab experiment. Some people are very hands-on. Maybe it’s time to let them try a lab experiment.
So let’s try it. By volunteer basis only, everyone who has complained about staying home because they need money, and don’t believe in socialism, (at least at times like this, when it is necessary to implement some socialist concepts,) should volunteer to return to work on a temporary basis.
Those who choose not to, should continue to be allowed to stay home while we try this experiment out. There are many jobs to be had, because as long as a significant portion of people are remaining at home, there are delivery services galore, and lots of services being used in order to work from home. Just like there are child care services being provided for children of essential workers, people who are against staying closed can take their children to childcare centers run by other people who are against staying closed.
That can be our test run. It doesn’t require anyone who is not willing to be at risk to put themselves at risk, but also doesn’t require people who don’t believe there’s anything to fear to stay home. They can go live their lives the way they would if everyone had returned. They should feel safe, because I’m sure there are no people who will ignore the regulations and recommendations.
Then evaluate the situation after a month. After a bunch of people have re-joined the workforce. see what the numbers look like. This is mid May. If we find out by mid June what happens if we open up right now, we find out on a smaller scale, and only those who chose to go back are risking anything. Nobody is required to risk their lives to find out if it’s safe. Only those who choose to be out there.
If it proves safe, the rest of us can re-join society with those assurances and feel better about it. Maybe provide one more stimulus check for this month, and those who choose to go to work and be our test cases get the check as well, so they get a bonus for being a test case. Meanwhile, nobody who has to stay home because of their health, age or other risk, goes without basics.
If it proves not to be safe, whether it’s because the virus is too strong and we just moved too quickly too early, or whether it would be safe, but for people who refuse to wear the masks and follow the rules, and even play games by licking bottles of sanitizer or purposely coughing on people, then we scale back, but hopefully this would mean we could do so before the potential disasters, such as overwhelming hospitals, becomes too high.
If we have the space now, to handle an increase, this would allow us to test that theory, but on a smaller scale than if everybody went back all at once. If we moved to early, hopefully with part of us still not going out, we could still handle the influx of new cases. But having part of us stay home will keep it from becoming the disaster it could be if everybody goes back all at once.
This could also potentially save the lives of people who are at increased risk, who might be otherwise required to return to work or lose their jobs, by giving them a few more weeks to find out what happens, and to feel safer about returning to work if it all goes well.
We can’t have a draw.
My instincts tell me this will never happen. Because somebody has to win. There has to be a clear winner and loser. We will continue scratching each other’s eyes out until there was finally a date declared when everyone can go back to work. The date will be too late in the minds of many, and too early in the minds of others.
For the sake of every person living in America, I pray whatever date that is proves to be the right one. That we find out the measures we have taken have been effective, and we never reached that terrifying point we were worried about, where hospitals reach maximum capacity. I pray they are right.
I also pray for everyone who is in a high-risk category, and dreading the idea of going back to work before you believe it’s safe. I have been in the position of having to choose not to work because of health issues. It was a nightmare. I have the scars to prove it. But I also know that it doesn’t matter if you have a job, a home, a car, and food… if you’re dead.