“Anyone Who Wants A Vaccine Can Get A Vaccine”… Unless They Are Chronically Ill Or Disabled

As I explained in a previous post, My Job, Not My Illnesses, Got Me A COVID-19 Vaccine. And my getting the vaccine only solved half my problem. The other half of the problem is that my husband, who is unable to work remotely, and works in a very public-facing occupation, had yet to be vaccinated as of the end of March.

My husband has asthma and high blood pressure. While he’s 37, he’s definitely at higher risk of getting serious illness if he were to contract COVID-19. Not to mention, he lives with someone who is immune-compromised (even though that’s not something that anyone seems to be considering).

He was on no less than five different waiting lists for the vaccine including grocery stores with pharmacies, free-standing pharmacies, the county health department, and multiple hospital systems.

And guess what? Thanks to a local Vaccine Hunters Facebook Group and some chronically ill tenacity, his wife (me) got him an appointment at a CVS 30 minutes away from where we live.

(To date, my husband has only come up on one of the waitlists he was on.)

But the experience confirmed for me yet again that the system is 100% broken. Our local, state, and federal officials have told us that “anyone who wants a vaccine can get a vaccine,” but this simply isn’t the truth. It couldn’t be further from the truth, actually.

Maybe by 2022, everyone who wants a vaccine will be able to get one. Trust me, I’m grateful that vaccines are available and that I was able to get one. I’m grateful that Vaccine Hunter groups exist that use the virtual hive mind to share information. But at the end of the day, don’t our elected officials have some responsibility not only to keep us safe, but to follow through on the promises they make? (And no, I didn’t sleep through 2020, so I’m aware that these questions are basically rhetorical)

As I hear from many of my chronically ill friends around the country and in Canada, who are no closer to getting a vaccine than they were when vaccines weren’t available or have to battle to get one, I feel their frustration. I feel the frustration that those of us who are under the age requirements that were priority, but have significant health conditions, have been totally left behind. Those of us with chronic illnesses and disabilities are not only not a priority, but we are an afterthought.   

As has been the case throughout the pandemic, chronically ill and disabled people have been left behind. And even those who don’t think of themselves in those terms but who are high-risk for COVID-19, like my husband, are simply an afterthought. Even more of an afterthought is that he lives with someone who is immune-compromised.

The longer the pandemic drags on, the angrier I become at the level of risk our elected officials have been allowed to pile on us, with little care or concern for the consequences.  

If you haven’t been able to get a vaccine, I would strongly recommended looking on Facebook to see if there is a vaccine hunters group in your area. I would also suggest that as things open up – (today in Michigan everyone 16 years and up is eligible) – to the general public that it might be easier to secure a vaccine, even though it shouldn’t have been like this. Everyone that was eligible based on age and conditions should have been able to get vaccinated before it opened up to everyone.

I’m looking forward to the day when my husband is fully vaccinated and I’m also looking forward to the day when we can truly say that “anyone who wants a vaccine can get a vaccine”. 

But I’m no public health expert, right? I’m just a patient.

My Job, Not My Illnesses, Got Me A COVID-19 Vaccine

For those of us who live with illness, the pandemic has brought into relief for many what some of us recognize is a daily slog of inequality and missed opportunities. There have been many lessons that I’ve learned over the past year, and I’ll have another post about that. But the major issue right now, is getting vaccinated. And I’ve been vaccinated, not because of my illnesses, but because of my job.

And I think that says a lot about what’s wrong with this country. We prioritize people’s careers over everything, including their health. I have chronically ill friends who are too ill to work. Or don’t work in healthcare. And they are still waiting to get vaccinated, with no real date in sight for when that might happen. So, they, and even I, who has been vaccinated, continue standing vigil over our own lives while seemingly everyone else attempts to get “back to normal” at our expense.

I thought everyone that wanted a vaccine would be able to get one. And that’s clearly not the case. My local hospital system has had to cancel vaccine clinics for weeks because they simply don’t have the supply.

My husband, who can’t work remote at all and has been public facing throughout the pandemic, has asthma and high blood pressure. He is on a waiting list, but because he’s 37, we literally have no idea when his turn will happen. And no one has accounted for people that live with high-risk individuals. Honestly, he should have been vaccinated before me because that would have provided mutually beneficial protection.

And if it weren’t for my job, I’d be waiting just like him. And there’d be no end in sight. And there’s still this archaic notion that only older people can be high risk. That only old people get sick. Like our state and federal governments think that allowing those 65 and older covers a large swath of the population. Thankfully, both of our moms have finally been able to get vaccinations.

But this is not the Oprah show. “You get a shot, and you get a shot, and you get a shot.” “A round of shots for everyone!” I get the job thing in terms of vaccinating frontline people first. I also get the idea of vaccinating the elderly. But the fact is, once again as has happened so many times during this pandemic, chronically ill people are left behind. We know exactly where we stand in the food chain. And in a world where it’s eat or be eaten, chronically ill people are the main dish. We are put on the altar of sacrifice with barely a second thought.

The slipshod, piecemeal approach doesn’t work. By letting the states decide, the guidelines just don’t make sense. For example, according to the New York Times, “Type 1 Diabetes will qualify you for a Covid vaccine in Ohio, but not in Indiana.”[1]

So instead of letting states decide, how about the government offer some guidelines? Didn’t we learn anything from allowing states to shut down and open up indiscriminately? Oh wait…Texas, I’m looking at you here…We’re still making the same mistakes that helped everything get so messed up to begin with.

I’m hearte1ned to see that in some places, my chronically ill friends (the majority of whom are under the age of 65) are starting to get vaccinated. But this is the vaccine Hunger Games, and for chronically ill people, the odds aren’t in our favor (unless you have a job that qualifies you).

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[1] https://www.nytimes.com/2021/03/09/us/covid-vaccine-eligible-preexisting-conditions.html?campaign_id=9&emc=edit_nn_20210309&instance_id=27904&nl=the-morning

My Experience with the COVID-19 Vaccine

First off, a Trigger warning. If you don’t want to read about vaccinations or see a picture of me getting one, then please skip this post.

I hemmed and hawed about getting the COVID-19 vaccine. Not so much because of the vaccine itself, but because I work in healthcare and was able to get it fairly early on. But I couldn’t help feel like there might be people needing it more than me. I didn’t read this New York Times article, If You’re Offered a Vaccine, Take It, until after I got my first vaccine.

I received my first dose of the COVID-19 vaccine on January 16, 2021 and my second dose on February 6, 2021. For those wondering, I got the Pfizer vaccine and I didn’t know I was getting it ahead of time. I do know people who got their first vaccine a week later at the same site I went to and they got the Moderna vaccine, so I think it’s pretty much based on availability and literally luck of the draw.

For the first shot, the site was drive up. It was pretty surreal getting a shot in the car, but it was super quick. For the second shot, the site was moved inside due to the winter weather. Even so, the queue moved quickly and seemed like a well-oiled machine. The first vaccine was given by a public health nurse and the second was given by a member of the army/national guard. I have to say, it was rather exciting to see public health in action.

I was a little nervous both times because I have had reactions (non-anaphylactic) to a few other vaccines in the past (HPV-II and pneumovax). However, I waited the prescribed 15 minutes after both times and was totally fine.  

After the first vaccine, I had a sore arm for three or four days. It wasn’t horrible, but was definitely noticeable. After the second, I started feeling “off” about six hours after receiving the vaccine. I had a stomachache for three days and a slight headache off and on for three days. My arm hurt too, for about the same amount as after the first one. I don’t think I ever ran a fever and it was nothing that knocked me out. I don’t know whether to celebrate the lack of side effects or worry about whether I got full immunity. But it’s not exactly something I can control.

I did contact my rheumatologist ahead of time and he did confirm that I should get the vaccine if I was able to get access to it. I’m not on biologics and I didn’t stop any of my medications ahead of time or afterwards.

Obviously, talk to your rheumatologist and/or other members of your healthcare team to make sure that there is nothing specific to your situation that disqualifies you from getting this or any other vaccine or whether there are any changes that need to be made to your medication regimen either before or after getting the vaccine.

I don’t think anyone really gets “excited” about getting a vaccine, but this felt different. Sure, I was worried about the side effects, but I was more worried about not getting the vaccine and being 100% vulnerable to COVID-19. It has been almost a year since I’ve been in the COVID holding pattern and I think it’s really important for everyone to understand that putting limitations on life hasn’t been easy. It’s exhausting to fear for my life every time I go to the grocery store.

So even though I’m vaccinated, will I be running around mask-less any time soon? Nope. And I won’t be going out to eat in a restaurant either. But that’s my preference. It’s not worth the risk to me. And while I can sleep a little easier knowing that if I were to get COVID, it will hopefully be manageable, I am going to do everything I can to, well, continue to avoid the plaque…like…the…plague.

Photo credit goes to my husband from the front seat. I could not take the picture myself, did not want to see that needle coming at me.

Thanksgiving is Canceled

 

I haven’t written a lot during the pandemic. I guess because I’ve sort of felt that we’re all in the same boat, even though we’re not. We’re not because there are people who continue to flout responsibility. 

There are people who think the pandemic is a hoax. Still. Even after nearly 250,000 of our fellow Americans have died. A quarter of a million people. Let that sink in.

In Michigan, I thought we had turned a corner. In June, we were down to 100 cases a day. And then our Republican legislature decided that it would be a good idea to have our (Democratic) Governor’s powers struck down. And can you guess what happened? Our cases have gone up, astronomically. (See graphic below)

(From https://www.clickondetroit.com/topic/COVID-19_Data/) 

Last week we reported over 8,500 cases in one day. More than double our worst day during the first go around. I’m not trying to be overly political. It’s a fact. If you look at the graph and look at what happened after October 2, 2020, it’s pretty clear to see (and if you can’t tell, I added an arrow and a box for reference).

Even before our state came out with new restrictions, we made the difficult decision to cancel Thanksgiving. It was a difficult decision, even as a high risk individual, but it ultimately is not worth the risk to myself and to the rest of my family to hold a gathering. I don’t think I’d be able to live with myself if anything happened to anyone in my family because we held Thanksgiving despite the risks.

So I decided that I would make food and we would drop it off to everyone – outside. That way, we can all be fed. I even found a way to get Kosher Thanksgiving food delivered to my sister and her husband in Ohio.

And for those who are mad now, just wait. I guarantee the restrictions that are starting aren’t going to be enough. And you know what? I don’t care if you’re mad. You know why? Because I want to live through this, and I want my friends and family to live through this. I’ve been on near house arrest for 9 months and I’m not complaining. For those who feel that their freedom is being diminished? How would you feel if for 9 months, your entire existence has been diminished? Those who say that those of us who are chronically ill and disabled can just stay home while the rest can go on living their lives? If you can’t see past your own nose, that’s the problem. This isn’t about you. It’s about the collective, we, us. We need to be safe, not just for ourselves, but for everyone else. I would love, love, love to spend Thanksgiving with my family. But it’s just not safe.

This year sucks. That’s the only way to say it. While I do know someone who had COVID in the summer, I now know people who have family or friends that have died from it. Don’t believe me? Read this heartbreaking blog post from my friend Kelly. So the reality is, things are as bad as they are claiming. COVID seems to be getting closer and closer, no matter how hard we try and avoid it.

So yes, we have been and will continue to do hard things, to protect ourselves and our loved ones from COVID. It may fall disproportionately on those who are high risk than those who are healthy or opt to believe that COVID isn’t real or that it cannot possibly get them. I saw a meme that said “Zoomsgiving is better than ICU Christmas”. So do what you have to do to make not celebrating this year akin to celebrating. Know that making the choice now means more celebrations later.

And just remember, while Thanksgiving is canceled, love and family are not. Be grateful that we have technology that can connect us with our loved ones, no matter where in the world we (and they) are. We cancel this year so that next year, we are all healthy, safe, and alive so that we can gather together then. Because there are people, like my friend Kelly, who won’t be able to have Thanksgiving or any other holiday with their loved one again.

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.

A House Divided, But We Stand United

I am lucky that I have a job that is allowing me to work from home, potentially for the long haul. I am lucky that I have a company laptop, and that our house has a reliable internet connection and all of the other necessities that I need to be able to do my job from home.

And just to be clear, my company wasn’t set up for this. My set-up at work includes a laptop and an additional monitor, while the normal set-up is two monitors. I started working from a home a week before all hell broke loose, not realizing that this would become anything other than temporary situation.

On the other hand, my husband works at a big box store that has been open for the duration of the pandemic as it has been deemed “essential”. (No offense to my husband’s livelihood, but this #HighRiskCovid19 wife disagrees with that designation) His job cannot be done from home. His continuing to work unfortunately increases the risk level of bringing COVID into our house. Due to other issues, my husband didn’t work for several weeks when the pandemic was really starting to surge in Michigan. One thing his employer has done is provide a fair amount of additional paid and unpaid time. My husband basically takes several days off a week to limit exposure, but also to stretch the amount of time off he has to utilize.

And to be honest, we had the conversation of going without his income. If he felt the risk became too great, he could take unpaid leave. Unfortunately, when you live with someone who is #HighRiskCovid19 but doesn’t have COVID-19, that scenario doesn’t fit into any of the extra-extra time off categories. So just because I’m high risk and my husband lives with me and loves me, doesn’t mean that his employer (or anyone) feels that he should get over and above time off to minimize his risk, which subsequently becomes my risk. And it’s not just his employer. There seems to be a black hole for this type of situation.

And making this is decision wasn’t just about me. We had to consider my husband’s mental health. What would it be like for him to not have anything to do and nowhere to go all the time? On the flipside, we don’t want his mental health to suffer if the concern for risk at work becomes too great and he is anxious all the time about the risk to either of us.

While we could live without my husband’s income, we cannot live without his benefits, which means he has to work enough so that his paycheck is enough to cover our benefits.

We are lucky in so many ways. But this struggle is real. The decision for my husband to go back to work after his initial time off was something that we both agonized over. Because once the cat is out of the bag, there’s no turning back. If he ends up exposed, forget everything.

These are the steps we’ve taken to do what we can to minimize the risk of my husband getting exposed to COVID-19 and bringing it home and exposing me:

1.       My husband wears gloves and a mask at work;

2.      He leaves a change of clothes in the garage, changes in the garage when he gets home, and leaves his work clothes in the garage until he washes them;

3.      We got him his own thermometer to take his temperature – doesn’t seem like the best thing to share at this point (and I don’t trust the inexpensive forehead thermometers that we could share);

4.      We have a very small stock of our own gloves and masks so that he isn’t relying on his employer to provide PPE;

5.      He uses disposable items to transport and eat his lunch rather than using items from home, like reusable containers, bags, and utensils, so these items are not being brought back into our house. 

Of course, by virtue of my husband leaving the house and going into an environment with co-workers and customers coming from all over, there will never not be a risk. But we are doing the best we can with the situation we have, knowing that we are incredibly lucky to both still have jobs during this difficult time.

And while we are divided in our ability to work from home, we are united in the quest for both of us to stay COVID-free.

In This Age of Connection, Why Do I Feel So Disconnected?

Today, we are more connected than ever. There’s Facebook, Instagram, Twitter, Snap Chat, text, email, snail mail, Zoom, Face Time, Houseparty, and the list goes on and on. (I’m almost in my mid-30s, I’m trying to keep up with the times, but it’s getting hard) There are so many ways to connect outside of IRL in this age of social distancing, yet what I crave is connection. IRL.

I have nearly daily Zoom meetings for work and I get to see some of my co-workers that way, but it’s not the same.

And the funny part, coming from this introvert, is that all I want to do is see some of these people and hug them. (Ew, gross, so not a hugger, can’t believe I would even suggest that, so not work appropriate) And I know that when I do eventually get to see them, I won’t even be able to do that.

The prospect of continuing to work from home indefinitely is daunting. Not as much the productivity part of it as much as the camaraderie part of it. As much as co-workers can sometimes get on our nerves, I miss most of mine. I miss being able to walk from my office to their desk to talk to them or ask a question. I miss being able to wave “hello” in the morning when we arrive.

What’s interesting is that nearly all of my chronic illness relationships were born, and built, online. There’s only a few handfuls that I’ve gotten to meet IRL. And all of those relationships have truly been life sustaining, but we’ve never known any different. Being spread across the country and world, IRL is a luxury and not a guarantee, with different diagnoses, and different levels of illness and ability.

But now, even the relationships that were born and built IRL are being forced out of IRL and into the world of Face Time, Zoom, and Houseparty. And I really don’t like it. Like I said in my last post, you can keep malls and movie theaters, and I’ll add casinos, gyms, theme parks, and beaches. I don’t need those. I can make my life smaller. But what I can’t do is live without my peeps. I just cannot.

I saw my mom the other day very briefly and I hadn’t seen her in over a month. A MONTH. And she literally lives 10 minutes away. Some might say we’re being overly cautious and that we aren’t living life at our own expense. But honestly, as someone who is #HighRiskCovid19, is being too careful a thing?

Is my feeling of disconnection the price of keeping myself safe?

I fear that if we try and go back to “normal”, it will all fall apart. Is it really possible to get together, wear a mask and stay six feet apart? I believe the need for normalcy will trump (no pun intended) the need for being and remaining cautious.

We don’t want to throw the baby out with the bathwater. But what good is physical health if emotional health is non-existent?

I know that life as we knew it may never be the same as it was before the pandemic. I know that there are sacrifices everyone is having to make. But how do we balance the sacrifice with quality of life? How do we make life as we know it now just as fulfilling as life was pre-pandemic without jeopardizing our safety and the safety of others in the process? And how do we maintain connection when we are so physically disconnected?

When It’s Over, Will It Really Be Over?

I’ve had a lot of time over the past days and weeks to reflect on COVID-19 and my experiences as a chronically ill person. To say I’ve been scared is an understatement. At home, I feel safe. I’ve barely left my house in over six weeks, and don’t plan to unless I absolutely have to.

From a personal standpoint, what I’m struck by the most is that I’ve once again been forced to face my own mortality. This isn’t the first time, and I know it won’t be the last. And don’t get me wrong. The specter of this hangs over my head as a chronically ill person all the time, but there are some times when I feel it more than others, and now I’m not sure I’ll ever be able to not think about it.

When I was 7, my grandfather died. When he died, I think that was the first time that I really understood what death meant, and that eventually it comes for everyone.

When I was 22, I was diagnosed with lupus and rheumatoid arthritis. It felt like until that point, I had been plugged into a wall outlet and the plug had been pulled out. It felt like I was dragging an impossibly short cord.

Two years after my diagnosis, I got a pneumonia vaccine at the recommendation of my rheumatologist. To this day, no one is sure if the reaction I experienced was due to an allergy or because the vaccine had been administered incorrectly, or both. I spent three days in the hospital, almost lost my arm, and could have lost my life. It was the first time that I realized that these illnesses could kill me.

When I was 29, my dad died unexpectedly as a result of severe flooding in Michigan.  To that point, the worst thing that had ever happened to me was getting diagnosed with multiple chronic illnesses. When my dad died, the worst thing that ever happened to me happened to someone else, happened to someone that I love(d).

Many things happen in life that we will never understand. They happen indiscriminately. But what really gets me about COVID-19 is that there were warnings. There were signs. There were things that could have been done to prevent it or mitigate its effects. And now, daily, hourly, people in our country are suffering and dying. And for what?

And those of us with chronic illnesses/disabilities have targets on our backs now more than ever. I know that I fear getting sick and not being able to get care if it is rationed to the degree that people are talking about.

I’m also frustrated, because as things start to reopen, I know that my life will not reopen like it will for healthy people. I realize that my life won’t get back to “normal”. And that’s when I realize that I lost the luxury of “normal” 12 years ago, when I was diagnosed with multiple chronic illnesses. I lost the luxury to make certain decisions that I would have made indiscriminately before, and are now made at the behest of my chronic illnesses. So for all those who celebrate the “new normal” that will come, for me, there will be a “new new normal”. Another mind- and heart-shift amongst many as a chronically ill person.

Right now, I don’t know what that “new new normal” will look like and I don’t know when it will occur or it already has. All I know is that when I left work the second week in March, knowing that I would be working from home, I never imagined that there wouldn’t be an end date. I never imagined that going to the grocery store, something I clearly took for granted before, is totally off limits to me now. I never thought I’d have to think about every move I make or every place I go. And I never thought I would have to justify my very existence to people I thought were friends. But in the age of COVID, nothing, and everything, is off limits at the same time.

The only thing that makes me feel more “normal” these days is that because COVID has sidelined everything, I’m going to doctors on a more normal schedule. My gynecologist cancelled my six-month follow-up and my dentist cancelled my every-three-month cleaning. Makes me wonder how essential they were all along. But for now, with no problems to speak of in those areas (knock-on-wood), I’ll take the break. Because going to the doctor right now, if I don’t need to, feels like more of a risk than it’s worth.     

I am grateful for many things, and know that I am in a position that not everyone can be in right now. I have a job that is allowing me to work from home. I still get a paycheck. I am able to afford what I need. But I miss my family. I would like to be able to see them more than just through my side door. And that’s all I want. I don’t care about going to the mall or the movie theater. I just want to spend time with them, because as this pandemic has reinforced, life and time is something that we aren’t guaranteed.