I’m starting a bit later than usual to plunk out my thoughts this week because I had to spend some time in one of my happy places to insulate my emotional reserves some for this topic. Which of course, should serve as a warning that I may be about to type some things that some of you won’t necessarily agree with. Those of you who have been reading with me for a while may remember that popularity isn’t my strongest point these days.

For those of you who have more recently begun checking in on my blog, I am sure you have probably figured out that I don’t have mainstream views for the kinds of care and support an individual with the level of disabilities our son has should have access to. The most concise way of summing up what I advocate for is that I support every effort for maximum inclusivity possible. I find that isn’t always the first thing people consider when thinking about someone like our son, though I hope in time that will change.

I hope each of you, in having been warned you may not agree with me, will at least hear my perspective with compassion and recognize the humanity of our family in all of this. That being said, I cannot go any further down my planned path without first dropping to my mental knees, bowing my thoughts, and honoring the pain and loss caused to so many with the deaths of more than 570,000 Americans from COVID.

The number is heartbreaking, and it will only continue to grow. I believe the reporting shown in this screenshot kind of sums this up: the lack of cohesion in following mitigation strategies in our collective actions have ensured that COVID will be part of our society for quite some time. New variants will continue to emerge, updated vaccines will continue to be required, far too many people will continue to die, and many survivors of even mild illness will continue to discover that their health may never be the same.

Although there is now evidence that COVID infections were occurring in the US earlier than originally thought, in my community there wasn’t really much serious discussion about what could happen long term until early March 2020. By the end of March I had already been through some experiences that made it clear to me that pandemic pressure was going to feel differently for our family than for some. From that moment on, I carried a tremendous weight from the expectations held by some that anyone working or living in our home was more likely to get COVID because of my husband’s job. For those of you new to our blog, my Andy works in healthcare.

Some feel this is logical and prudent. I respectfully feel that protective equipment properly worn combined with the training my husband received places him at a risk substantially lower that that experienced by many other professionals, such as those working in restaurants, grocery stores, or pharmacies. My honey also always knows the symptoms of a patient before he ever interacts with them and can don increasing levels of PPE accordingly, on top of having ample opportunity to wash his hands or clean surfaces before and after every patient. Again, that isn’t an advantage afforded to workers in many fields. My husband never caught COVID during this past year. He was tested for antibodies at one point even to make sure there wasn’t an asymptomatic infection that had been missed, and that was negative. No one in our house has been sick that way this past year (anaphylaxis and POTS don’t qualify as viral infections), and now he’s fully vaccinated. But we are still on the “too risky to interact with” boat for some people because of his job and for some people we may always be.

In giving those brief comparisons I feel that it is necessary for me to state that I don’t advocate stigmatizing anyone based on their perceived job exposure, and I have chosen to respect the comfort levels of everyone involved whatever that may be. I think we are all in this together and we should all do the best we can to be there for one another in all of this. My freshman year of college, I volunteered for an HIV awareness group, and we went around campus discussing the importance of testing and safe sex. One of the things we often pointed out is you can’t tell whether or not someone has certain STDs based on how they look. And with a pandemic where asymptomatic spread is such a driving force, we can’t succeed at limiting cases if we think that we can tell how risky someone could be based on where they work. If we want to reduce spread, I think we have to treat everyone as if they represent the same level of risk. For me, because I don’t advocate shutting down our entire society, what that means is I wear a mask around everyone I don’t live with. Period. No matter how much I love them. No matter how much I miss seeing their face. No matter how uncomfortable the mask is or how much it is ruining my makeup. And believe me, especially if I have to do community safety exercises with Tony and another therapist, wearing a mask with fabulous filtration ruins everything from the cheeks down! And the mask will remain even after I get the second vaccine dose because of the variants.

A few months into the pandemic, someone who interacts with our family on a regular basis caught COVID from someone else that they had direct daily contact with. After I had expressed my concern for this individual, I sank into the floor sobbing. The pressure of the expectation that anyone connected with us would get sick from us had done dark and ugly things to me emotionally for those first few months, and I had to do a whole lot of self-care to keep that weight from crushing me. I thought perhaps in that moment, this might illustrate to those around us who were still concerned that risk isn’t always what people think it is.

What people thought then and what people think now isn’t really in my control. I find that people still certainly can view things differently, even if they work in some area of healthcare themselves. And believe me, nothing causes pandemic pressure like finding out a provider necessary for your medical care has staff that isn’t willing to work with you because of potential exposure from your husband’s job. A year into this with a virus that likely will be around in some form or another the rest of my life, that can honestly feel pretty scary. I just try not to live in that fear while I am seeking to respect individual wishes and do the best I can to move forward someplace else.

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The isolation from this pandemic nearly ate me alive. But it didn’t in part because of those who trusted our family to do the best we could to protect them as they worked with us in home or who participated with us via telehealth. Sometimes the level of diligence required can emotionally be hard. I got together outside at a park (masked of course) recently with my good friend Gena and left early because Andy texted me he had a headache. I’ve only seen her a few times in this past year, and we used to get together every week. Turned out to be related to some cramped muscles, but I don’t feel like we’re in a place where I can just shrug things off without investigation because I live with this heightened awareness that some view contact with us to be riskier because of my honey’s job. Even if he’s vaccinated. Even if he’s wearing an N95 and a face shield as needed.

Sometimes I have to play extra little games with myself mentally to keep from going bonkers. I actually really love to visit with and talk to people on a regular basis. I kind of smother to death internally with too much isolation, but I’ve found that sometimes making random notes in a book I’m reading that would be similar to the types of comments I might make while watching a movie with a friend can keep me from totally loosing it when I need more people time. I’ve had to learn I can and should be my own friend in all of this. Because the pandemic pressure has been very real for me in a different sort of way, even if none of us here have had COVID at this point.

And I’m thankful for that. And I am thankful for each of you.