There Are Many Ways To Protest

Over the last few weeks, as someone who is #HighRiskCovid19, I have struggled with whether or not to attend a protest. I fully support Black Lives Matter and I truly believe that there are significant changes that need to happen in our society. I also know that my struggle of whether or not to attend a protest is part of my privilege.

Clearly, I haven’t been the only one struggling with this:

https://www.ghlf.org/fight-for-racial-justice-high-risk-for-coronavirus/

Therefore, I think it’s important to talk about other ways that we can “show up” without having to be present in person at a protest. One way that I’m doing that is to expose racism when and where I see it.

A friend shared a post about vile, racist tweets that had been connected to the Chief of Police of Shelby Township. I won’t post those here because they are highly offensive, but if you Google any of this, you will be able to find them. When I looked at the picture of who the tweets were being attributed to, before I even saw the name, my heart sank. I know him. I’ve dealt with him. And I am, unfortunately, not surprised.

How do I know Robert Shelide? I won’t rehash what happened to my dad. You can search my blog as I have frequently written about it. However, I had horrible interactions with this man, who was the Deputy Chief of the Southfield Police when my dad was missing and ultimately, was found dead.

I sent the following letter to every member of the Shelby Township board, and a variety of local and state officials and members of the media:

To Whom It May Concern:

In the flood of 2014, my dad went missing. My mom attempted to report him missing and no police departments would take a report. At the time, my parents lived in Southfield, but my dad worked in Shelby/Clinton Township. The Southfield Police Department was particularly cruel and insensitive, especially my interaction several months later with, at the time, Deputy Chief Robert Shelide.

My grievances with the Southfield Police Department have been aired, but by the time that we had an opportunity to sit down with the Chief of Police, Mr. Shelide was no longer employed with the Southfield Police Department, so they refused to address anything related to him.

I had written a letter to the Southfield Police Department outlining what had occurred with my dad and where I felt they had failed in serving and protecting. I received a phone call from Mr. Shelide. Amongst other things, he told me that the steps I was requesting wouldn’t have been taken “for a family member of the mayor.” He also told me that my dad could have been “at McDonald’s or in a hotel” and “that he didn’t warrant departmental resources.” As you can imagine, this was shocking and devastating to me. My dad, in fact, was not at “McDonald’s” or “in a hotel.” He was found dead in his car the day after he went missing, not by the police, but by a person that lived on the block where my dad's car was parked.

Totally unrelated to my experiences, it has come to my attention via several social media posts shared by friends that have identified abhorrent posts that Mr. Shelide, who I have never followed on social media, has posted. These posts invoke violence against people of color. At best, they are unequivocally racist in nature. At worst, they are criminal and should not be acceptable coming from any human being, let alone a law enforcement officer.

I randomly came across the social media posts, and felt a sense of dread. Not only do I know who this person is, I have experienced his lack of empathy and compassion firsthand. I have wanted to write this letter for years, to make sure your community was aware of the kind of person that your city had as its police chief. But I resisted the urge. But what the last few days have taught me is that I have to use my privilege for good. And my concern, more than for my dead father, is that if your Chief of Police could speak to a grieving daughter that way, what else is he capable of? And how many police departments in this state will pass him around, hoping that he will magically change? If change is going to come, it has to start with the people that have power. And you do. So the question is, how will you use your power?

It is my sincere hope that by taking a long, hard look at who leads the Shelby Township police, you will take a look at yourselves. Would you be okay if the next George Floyd occurred in your city? Forget about Neal Rott, of blessed memory. Think of all those who don’t have the privilege I have to even be able to write this letter.

Black lives have always mattered, but apparently they matter more to some than to others, and others should not include law enforcement officers.

***

While just hours after the story broke, he was put on “indefinite paid leave” and issued an empty, thoughtless apology, it truly appears that the media is trying to squash this story. It also appears that the board, afraid of a lawsuit, is going to take their time in doing what needs to be done.

We cannot let that happen.

It’s simple. If the sentiments expressed by the Chief of Police truly due not represent the views of Shelby Township, then they need to do what needs to be done. Forget contracts and legal requirements. He has to go. He needs to be fired. And he needs to be barred from working in law enforcement ever again.

Not one person on the board or member of the police department has publicly spoken out against this man. The “he does not represent our views” trope is callous in the face of refusing to prove that by standing up and saying that his views are disgusting and should not be tolerated. How can this man keep people safe when he publicly vows to do the opposite?  

Here is a link to an online petition that is asking for this man to be fired from his job as the Chief of Police of Shelby Township:

http://chng.it/GLDBBb5MsH

I am *not* the author of the petition, but if you feel strongly about the changes that are needed, it starts with this. It starts with exposing racism and forcing people who glorify those feelings out.

Silence is complicity. I believe that white people no longer have the right to remain silent. When we encounter racism, we have to expose it and defend against it. You may not feel comfortable writing a letter to the degree and tone of mine. You can send form letters and emails and sign petitions. And you can do research. You can look into how much money your city spends on the police versus how much they spend on other things, like health. And you can let your local and state officials know that we need to prioritize health, schools, and other social services. For example, in 2017, Detroit spent $310,200,000 on the police, 30% of the general fund budget, and $28,900,000 on health, 1.6% of the general fund budget (This report outlines police spending in other cities, as well: Freedom to Thrive: Reimagining Safety and Security in Our Communities).

It’s not hard to see how we got to where we are, with a pandemic raging that is disproportionately effecting black communities. We can’t talk about the police without talking about health, and we can’t talk about any of this without addressing the structural inequalities and systemic racism that exists in our country.

I certainly have more to do, but I hope that by exposing racism and speaking out against it, I am taking the first step to becoming anti-racist.  

Being Chronically Ill In The Age of COVID-19

(https://nypost.com/2020/05/20/end-new-york-citys-lockdown-now/)

I happened upon the May 23, 2020 issue of the New York Post and was greeted with “One Man’s Plea” regarding re-opening New York City, the crux of which was, “The elderly and infirm can continue to be isolated,” but the quarantine must end for everyone else.  

This trope makes me so angry.

Why is this narrative okay? Why is this thought process okay? Because we’re useless? Because our lives don’t matter? What I’ve learned from this pandemic is that a lot of people lack a sense of social responsibility. It should not be every person for themself. Like refusing to wear a mask because it may make you physically uncomfortable temporarily. But it may also save other peoples’ lives if you are asymptomatic but have COVID-19. Everyone’s actions in regard to this virus have consequences on other people. It’s not just you endangering your own life.

While I have been very much in support of the Governor of Michigan throughout the pandemic, I am somewhat dismayed at the lack of effort that has been put forth regarding at-risk populations.

Did you know that in the Governor’s plan for re-opening Michigan it is strongly suggested that at-risk people shelter-in-place through Stage 5? Stage 6 is post-pandemic. As in, there is a vaccine. Best case scenario, that’s six months away, but more than likely that’s 18 to 24 months away. And that’s really only if it’s not a live vaccine because that will mean that many at-risk individuals, including myself, won’t be able to get it. And that would mean that everyone who isn’t at risk that is already calling the vaccine “the government’s excuse to microchip us” would have to put their theories aside and get vaccinated for the sake of others, because many of us who would get it won’t be able to.

I’m sick of the crying and bellyaching about how people are minimally inconvenienced by wearing a mask. I’m angry that a lot of people are willing to throw away the lives of others. The “why should I give up my freedom for your life” is more “why should I give up my life for your freedom.” But really, it’s a false dichotomy. Such questions and decisions diminish us all. It is inherently ableist to think that the “elderly” and “infirm” can be thrown away.

We’re being forced, not into institutions, but into our own homes, where it is presumed we will stay and be quiet until the appointed time it is designated safe – if that ever happens – for us to re-enter the world. But we all have lives that exist outside of the four walls of our homes. And those lives are vibrant, valid, and as important as any one else’s.

So while I’m happy that everyone else’s life is opening up, restaurants and bars are re-opening, I’m sorry to say that I won’t be going. Because the reality is, the only one who is going to keep me safe is myself. And for now, that means staying at home.

***

As of this writing, the guidelines have changed. But at-risk individuals should still practice social distancing and wearing masks, while apparently no one else has to. Staying home is safer. Now we have a target, not on our backs but on our faces. This everyone-else-can-go-about-their-business is bullshit. And it’s tacky. The state basically re-published the guidelines and plastered on it “Reopening programs and services for older adults age 60+ and vulnerable individuals with underlying health conditions.” This isn’t progress, this is politics.

And we weren’t asked. As far as I can tell, no patients or doctors were consulted in this decision-making. And we deserve a place at the table. No evidence has been provided. And maybe there isn’t any, but if there isn’t, that should be disclosed. “We have no evidence to support our poor decision-making. Consult your health professionals for guidance.” Whatever. That’s better than what we’ve got. And what we’ve got is nothing. If, after careful thought, consideration, and planning, it is still deemed that the most realistic option is to shelter-in-place as much as possible, I will take it. But I cannot and will not accept no effort or thought being put into this decision.  

The reality is, this pandemic has brought into full relief the injustices that have always existed in this country, where minorities of any kind are at higher risk for worse outcomes of everything, including COVID-19. And as the last several weeks have shown time and again, at risk of death from many things other than deadly diseases, simply because of their minority status. 

So if this feels like a kiss off, it probably is. As I railed against this to a friend who is not chronically ill, she said that the state should have just put a post-it note on the document that said “be careful, good luck…” It’s basically akin to “stay safe out there.”

This is a failure of epic proportions. It’s not just a healthcare system that was unprepared, it’s a government that has been teetering on the brink for longer than we’d like to admit. It’s that America has never had a good safety net in place for the most vulnerable among us. And to think that altruistic people will remain so when they are out of work and struggling themselves is completely unrealistic and puts the blame everywhere other than where the blame should be.

So before newspapers like the New York Post give front-page status to a whiny baby, maybe they can make room for the people that need their voices to be heard. Maybe someone, for one minute, can try to understand that while I am lucky to have a home that is livable and clean, has functioning utilities, and is safe, being at home indefinitely may not be the best option, physically or emotionally, for me or any other high-risk person.

Ultimately, it’s about what we are willing to accept, as individuals and as a nation. Mitch Albom wrote more eloquently than I ever could about “acceptable losses” and how much we are willing to lose for the freedom to leave the house and move through society unfettered while the pandemic rages on, whether we want to admit it does or not (https://www.freep.com/story/sports/columnists/mitch-albom/2020/05/27/mitch-albom-coronavirus-100-000-covid-19-memorial-day/5251822002/).

Truly, I have very little desire to be anywhere but home right now. It’s not that I don’t yearn to get back to my life as it was before March 13, 2020. I do. But right now, everyone is a threat, those wearing masks less so than those who aren’t. I will live in a bubble that I didn’t consent to.

My chronic illnesses have morphed into something that I clearly haven’t accepted because in 12 years, with the exception of once, I’ve never had to accept this kind of personal protection. I never signed up for being chronically ill meaning that I’d be afraid to leave the house and I’d be afraid of every single person that I came in contact with. I never considered that what could be floating around in the outside world could be worse than what was going on inside my body. And I never expected that when everyone had to be weary of that threat that the resounding response would be “Not me. It’s not my responsibility.”

Because we know that “The elderly and infirm can continue to be isolated” isn’t just the plea of one man, but the plea of many.

I Lead A Good Life And I’m Not A Burning Down House (Or Shit People Say To People With Pre-Existing Conditions)

First, Senator Pat Toomey (R-Penn) compared people with pre-existing conditions to burning down houses, stating that it’s pointless to insure a house that’s already on fire, and so the same follows that people who are already sick aren’t worth insuring (1).

Then, Representative Mo Brooks (R- Al) said that healthy people are people “who lead good lives” and are those that have “done things the right way” (2).

And you’re probably thinking what the what.  Of all the stupid shit…

So if you’re a sicko like me, I guess that means you’re a burning down house of a bad person. 

The Government is trying to beat us at our own game.  They are trying to make us feel inadequate.  They are trying to reinvigorate feelings that you may have had when you were first diagnosed. 

I know that when I first got sick, I wondered if my life was going to be worth living.  And I wondered what I had done to deserve being sick.  I thought I had been living a life that would keep me from harm.  But I was wrong.  And for someone to suggest that any of us are to blame for our chronic illnesses is disgusting, shortsighted, ill-informed, and just plain wrong. 

What I have come to realize over the last nine years is that, yes, my life is worth living.  And no, there was nothing I did or didn’t do that caused me to get sick.  Other than living in this country, that is.  If you’ve seen previews for “An Inconvenient Sequel,” it makes me wonder if living in a country of privilege like America has caused the uptick in autoimmune diseases.  And all of the other money that our government is cutting is just going to make that worse.  But I digress. 

This is not the country my great grandparents fled to from violence and religious persecution.  This is not the country where I have had dreams of raising my future children.  The past, present, and future hinge on the decisions that our government will make about us and the worthiness of our lives and our place in the fabric of America because we are sick.    

We currently live in a country where those in power think they have the right to say stupid shit about people.  Why?  Because Senator Toomey and Representative Brooks know that most of us with chronic illnesses are out living far better lives than the ones they are.  Minus the money and influence, of course.  

Our government is building a wall, people, but it’s not between America and Mexico.  It’s between the healthy and the sick.  And maybe it’s a wall that has always existed.  I know that I have felt envious of my healthy counterparts since the day I got sick.  But the wall they’re creating is a bigger than that.  And it might ultimately mean a wall between the living and the dead.      

Dear Government,

One day, you’ll get sick.  And while it’s likely that your money will get you farther than my witty banter will get me, it won’t do everything.  One day, your money won’t get you anything but dead, just like we’ll all end up one day. 

So here’s a few tips, because having money and influence doesn’t make you a good person.  Neither does being involved in politics. 

-         Think before you speak.  Now there’s an idea. 

-         Words matter.  The things you say matter.

-         Stop using big words you don’t understand. 

-         Take a refresher course about how insurance actually works since you seem to be missing the point of it.

-         Stop throwing shade at the people who are paying for your unnecessary vacations while those very people struggle to pay for the medications and medical care that keep them alive.   

-         Power and influence don’t matter if you don’t use those powers for good.

-         Having empathy and compassion make you a good person.  Putting yourself in the shoes of someone whose personal experience is completely unlike your own and trying to understand their situation is a helpful life skill.  People will like you.  Your mother will be proud.

I am not in politics.  I don’t desire to be in politics.  But I desire to create change.  I want to make the world a better place.  And I think that’s more than can be said about a lot of the people that seem to be influencing our government right now.

I know the difference between right and wrong.  I know that what these politicians are saying is wrong.  I know that the potential consequences of their actions is wrong.  I know that providing access to quality healthcare for ALL is right.  And I know that leaving out the sickest among us is WRONG WRONG WRONG! 

Yes, I understand that I feel passionate about this because I am a “sick” person.  I am also passionate because this negatively impacts a lot of people I know and love.  But I’m also passionate because I was once a “healthy” person.  And when I became a “sick” person, I learned that the distinction between “healthy” and “sick” is a tenuous one.  We unknowingly teeter on the border between healthy and sick until we are no longer healthy any more.  Then we are sick.  And for some of us, we never become healthy again. 

But that doesn’t mean that we did something wrong or did something to deserve our illnesses.  And it doesn’t mean that we deserve to pay more money – money that we don’t have and can’t afford to pay – for healthcare because we are sick. 

The richest among us are proving that they don’t want to share the wealth or the health.  That they don’t play well with others.

Jimmy Kimmel is brave.  He’s using his powers for good and not evil.  And yet there are those who are pushing back, who are saying that they do not want to pay their money for his sick child (3).

But this is the way insurance is and has always been.  If you’re healthy, you pay for insurance so that if something happens, you won’t be bankrupt and destitute because of it.  And if you are sick, you have insurance so that your life doesn’t completely fall apart.   The reality is, we will all get sick someday.  And when we need it most, we will want insurance to be there so our lives won’t fall apart any more than they already have. 

My today could be some Republican’s tomorrow.  Or anyone’s tomorrow.  No one is immune, literally and figuratively. 

I’m lucky.  I know that I’m privileged in that I can stand on a soap box and don’t have to worry about losing my job.  Because my employer knows I’m sick.  They knew prior to day one.  And I’m lucky that I didn’t fear not getting my job because I am sick.  But I know that, that is a reality for many.

So I want to speak for those who are frustrated, angry, and disgusted but do not feel they can publically voice it.  I am mortally scared that employer-based health insurance will no longer be affordable and that I will lose coverage, and as a result of that and my multiple pre-existing conditions, I won’t be able to afford any insurance at all.  And that will render me without doctors and without treatment that will quite likely and relatively quickly leave me in pretty bad shape.  In unworkable and non-functioning condition.

Premiums for rheumatoid arthritis and other autoimmune diseases could rise to $26,580 per year (4).  That’s one of the highest premiums for any disease that isn’t cancer.  And that’s more than I make in SIX MONTHS PRE-TAX (so I don’t actually take home that much at the end of the day at six months).  So I would literally be working to pay for health insurance.  I wouldn’t be able to afford food or rent or my student loans.  And I probably wouldn’t be able to work at all because it’s unclear what spending all that money would get me, other than insurance, which would literally be a plastic card that I could wave around with my arthritis-ridden fingers. 

So thank you.  Thank you Senator Toomey and Representative Brooks.  Thank you for saying stupid shit about people with pre-existing conditions.  Thank you for giving us a reason to use our voices and fight for rights that we clearly don’t have but clearly deserve. 

(I could have posted this a week ago, but I was going to be traveling and didn’t want to risk the plane being shot down or ending up on the “do not fly” list)

#HealthHasNoParty

#Iamapreexistingcondition

(Photo credit @HugoOC and @TheLizArmy)

***

(1)   http://www.phillymag.com/news/2017/01/25/toomey-health-care-preexisting-conditions/

(2)  (http://www.salon.com/2017/05/02/alabama-congressman-people-who-lead-good-lives-dont-have-preexisting-conditions/

(3)  http://www.cnn.com/2017/05/02/entertainment/jimmy-kimmel-baby-surgery/

(4)  http://time.com/money/4769050/ahca-pre-existing-conditions-surcharge/

It’s Personal And It’s Political

I’ve been absent from my blog for a while now.  It’s not that I don’t have anything to write about.  I do.  I had surgery in November that I haven’t even talked about.  There are other things that have happened, too.

It’s personal…and…it’s political. 

Personally, I’ve experienced some growing pains in writing for some of the other health sites that I used to write for.  I feel like Johnny in “Dirty Dancing.”  But instead of telling me I can’t do my kind of dancing, someone told me that I can’t write what I want to write.

I’ve been restless.  I’ve felt unfulfilled.  I’ve pulled back on a lot of my advocacy efforts.  Partly, it’s me.  But partly it’s by virtue of the things that I’ve been involved in.  I don’t think I’ve changed that much. 

I don’t mind edits, and criticism.  That’s not the problem.  But when I am told that I can’t write what I want, and then that because I’m not gaining enough readers to merit being a consistent contributor, I can write on a freelance basis, I have to walk away. 

I draw the line at my voice being changed, at the sentiment of the message not being my own. 

Worse than boring is being status quo, and is not standing up for what you believe in.  It means saying no even when that might mean turning down opportunities that you once would have taken without question.  It means remembering why I’m here, where I started and where I’m at now.  And reminding myself that it’s not a popularity contest.    

Because when it becomes more about the voice of the sponsor or the image of the company and less about the patient voice, that is a problem. 

In the end, I don’t represent a company or website, I represent myself.  And if I’m not representing myself and my fellow patients, then what the heck am I doing?

I haven’t worked as hard as I have to be a patient advocate in order to be a voice for the status quo.  I haven’t gained the following I have for writing anything less than the truth, be it ugly or upsetting or otherwise unpopular. 

And I think that this is a representation of the broader political climate, which is currently KILLING me.

I've seen so much infighting lately between chronically ill people that were formerly friends and I believe that’s exactly what this administration wants.  I have friends who post things like “those who have employer-based health insurance aren’t immune.”  It's a privilege that I can and do work, I know that.  But it’s not easy.  My job takes the majority of my time, energy, and attention, which has meant that this kind of advocacy has had to take a backseat.  I’m not complaining, I’m just explaining.

And to be clear, my health insurance status since I got sick has literally spanned the spectrum.  I’ve had amazing faculty-level student health insurance, mediocre student health insurance, insurance through the exchange, Medicaid from two different states (not at the same time obviously), and now employer-based health insurance.

I actually just found out that I’ll be getting new health insurance through my employer soon as a result of the current insurance company raising my company’s rates over 50% as a result of the uncertainty in the market that the current administration has caused.  My company has done a good job, so I’m told, of finding coverage that is comparable to what we currently have.  But the prospect of starting over again in this realm is overwhelming.  While I had the same health insurance for all six years of my PhD program, in the four years since then, I’ve had five, and soon to be six, different insurances.

For someone like me, who sees a doctor more than once a year, the prospect of a new insurance plan is anxiety-provoking.  So for anyone who is under the false impression that a job guarantees you health insurance, it’s rocky and tenuous, even under the best circumstances. 

I’m scared and I’m worried daily, if not hourly.  I’m worried that at some point sooner rather than later, I won’t be able to afford my medication or insurance.  I’m worried that I won’t be able to get the care that I need.  And I’m worried that friends of mine will lose their quality or life, or their lives altogether, because of the very real possibility of the concerns that I just mentioned.  And I’m frustrated that in this time of great uncertainty, I don’t have the time or energy to devote to the fight that is so, so needed right now.  

And in reality, I know I am healthier than many of the people I know that have my same illnesses.  But I too worry about the vicious cycle of not being able to afford my medication or appointments, thereby not allowing me to work, thereby not having insurance.  It’s an everlasting loop of suck, or worse, debility and death.   

So that’s why I haven’t been writing.  I’ve been pondering the past, present, and future.  I’ve thought of how best to express all of this, and I’m not sure I’ve captured it adequately here. 

But I’m here.  I’ve been here for nine years this month.  It’s hard to believe.  And I don’t plan on going anywhere.  So keep reading.  Be patient.  Don’t give up on me.  Because together, we have a lot of fighting to do (and not with each other – that has to stop now). 

We are patients.  We are important.  Our voices need to be heard.  And we need to stick together.  While I don’t think it has ever mattered who is sicker or who has a job and who doesn’t, I think it matters even less now.  Our commonalities have to be stronger than out differences.    

#Iwillnotbesilenced AND #Wewillnotbesilenced