Kindness: Be Kind, not Nice

Last week I got a new roommate here in rehab. She’s recovering from some pretty major surgery and really isn’t “alert and oriented”. Her husband has been coming here every day and sitting with her for ten to twelve hours a day. He clearly loves her very much and wants to do all he can to care for her. And he’s quite affectionate with her, too.

Of course it’s also 2023. We’re approaching four years since COVID entered our lives. At this point, we’re all well versed in basic COVID protocols: wear a mask, maintain social distancing, get vaccinated. And the most obvious, of course–avoid contact with people who test positive for COVID.

Hospital Stays during COVID

Now I’ve had two hospital/rehab stays since COVID began. The first one was in May of 2020. Before vaccines. Everything was still locked down tight. No visitors. Masks and gowns and face shields for anyone coming into the room. While masks weren’t required for patients in our rooms, they were strongly recommended. I wore one almost all the time, both in the hospital and in rehab. But for this second stay, things have changed a little bit. In spite of the governor’s best efforts, more than 80% of Floridians have received at least one dose of a COVID vaccine. More than half are fully vaccinated, too. And with COVID vaccines being widely available, and infection rates down, visitors are now welcome in the hospital and rehab as long as they wear a mask and attest to being negative for COVID.

It would seem to follow then, after all of this time to get used to COVID protocols, people like my roommate’s husband would be used to the COVID routine in health care settings. Go in. Fill out paperwork promising that you’re negative for COVID. Get a visitor badge. And of course, wear a mask. Wearing a mask properly however, seems to be beyond the capabilities of some people. Including my roommate’s husband, who seems to think that his mask is actually a chin guard.

Kindness and COVID

So I’ve been wearing an N95 mask whenever he’s here in the one place I’m allowed not to wear a mask–in my own room. It’s annoying to have to do that, but my safety is important. I’ve got enough to deal with on my plate without COVID and all of its potential risks and complications. If that means I have to wear a mask in my own room while he’s in here, fine, I’ll do that. The nurses can’t monitor his mask wearing all the time, but this room is prime real estate here, near the nurses’ station and the med cart, and with a nice view outside. The nurses pass by here often, and they do say something.

And then yesterday, my roommate’s husband was here in the morning, and he left as usual for lunch, and didn’t come back. I was surprised, since he had always told her when he was going to be late or if she would have other visitors. But I had other things on my mind and didn’t really think about it until last night, when Kim came in to tell me that the nurse would be coming around to test me for COVID shortly. It’s not my usual COVID testing day, and that’s usually done by daytime nurses anyway, so I was confused. At least until Kim told me that my roommate’s husband had tested positive for COVID. That, obviously, explained why he hadn’t come back.

Testing and Waiting

Shortly after that, the nurse showed up and swabbed my roommate. Then she came over to me. I asked if she wanted me to do the swab myself, and she tore open the package and pointed it at me. I removed the stick, swabbed my nose and set it on the card, offering to watch it while we waited for the results. The nurse let it on the table with me, and left the room.

Before the nurse had even come back to look at my test, all of the quarantine gear was being hung on our door. My roommate had tested positive for COVID. We’re restricted to our rooms–no visits to the therapy gym, no attending any social activities or visiting the dining room or tv lounge. And worst of all? No showers.! Only bed baths until our restrictions are lifted. I’ve only been allowed to have real showers for a few weeks and now, even that little pleasure is gone.

My test, thankfully, was negative. Still, I’ve been exposed and therefore I’m stuck for the time being. This positive COVID test also means that visits from other people–Maria, the CNA I practice Spanish with, Danielle, one of the nurses, Amarika, who is buddies with my usual daytime CNA, Tianna (who is on vacation this week,) and all of the other people who help keep my mood from plummeting can’t stop by to visit and say hello. To bring me an extra cup of tea, or drop off treats as several people did on New Year’s Day. No.

Kindness and Loneliness

Only one CNA for the whole day, and they’re supposed to limit contact. So today, it’s Marisol, who I’ve never met before. Who isn’t familiar with my tremendous tea drinking habit, or the way that when it’s time to bring around water I ask for two cups–one with ice water and one with only ice so that it melts and I have water later and don’t have to bother someone just for that. Someone who doesn’t know all of the little things that the people who are here all the time know.

But Amarika does know. Amarika is one of the people who looks out for me when Tianna isn’t here to do it. And Tianna is on vacation this week. At lunchtime today, Amarika stopped by and stood forlornly in my doorway, apologizing for not being able to come in, but telling me she still wanted to check on me anyway and letting me know that she’d make sure I got another cup of tea. She even brought me a tea bag from her own stash of ginger tea, too. She brought it back and handed it to Marisol along with a handful of N95 masks.

Kindness and the Little Things

It’s the little things that matter. That cup of tea meant so much to me today. The little bit of kindness goes so far in keeping my mood from plummeting while I deal with the consequences of someone else’s irresponsibility.

I’ve been the recipient of a lot of kindness lately. The CNAs spoiled me with food and treats for Christmas, the nurses and CNAs invited me to join them on New Year’s Eve, they shared their pizza and other snacks with me. For a few hours I felt a lot less like Erika-the-patient and a lot more like Erika-the-person.

Those things that boost the feeling that someone recognizes me as more than just a patient, they’re really important to me. They’re part of what helps me keep a positive attitude here, even when things hurt or I’ve had a terrible day at therapy. Or even on the days that I’m just sad about being here.

I think a lot about what the CNAs give me and what the nurses give me. Because every day they’re here with me, and I’m reliant on them for almost everything. I’m surrounded by people who depend on them for even more than I do, too. They work hard and they have a difficult job.

I do what I can to help myself. That’s part of being in rehab. And what I can’t do, I make sure to say “thank you,” when people help me with it. 

“You’re Nice”

So I was absolutely gutted the other day when a new-to-me CNA was here with me. After she was done doing the thing she had to do, she introduced herself. I said “Thank you for helping me. I’m Erika. It’s a pleasure to meet you.”

When I said that, she pulled back and looked shocked and confused. Like it’s something that people don’t say to her. She looked back at me and said, “you’re nice.”

My heart fell. How could a simple “thank you,” and some basic politeness mean enough to a person that they’re surprised by it. Surprised enough to say “You’re nice.” Are people really that terrible? 

It’s really hard for me when people say nice things about me. I’m a lot more comfortable with criticism than praise. But this time I really didn’t know what to say. I managed to get a “thank you” out, but I’ve spent a lot of time since then thinking about that interaction.

“Compassionate Pain,” or, “There is no ‘I’ in Splagchnon“

One of the things I’ve been working on is sitting with my own discomfort. Whether that’s people saying nice things to me or being in situations where things are unfamiliar and making me nervous or uncomfortable. But when I couldn’t get this little interaction I shared this story with my friend Laura. Who is really Pastor Laura. And who has taught this Jewish kid countless lessons about faith and compassion and humanity.

Laura found the right words to describe what I was feeling. She called it “a compassionate pain.”

 Her next text message said:

“The Greek word that gets translated compassion is splagchnon – intestines… guts. So the gospels talk about Jesus responding to the folks who are hurting and tossed aside with a love and concern that starts in the guts. I think we learn (are taught) too early to read that twinge as fear of other instead of compassion for them”.

As usual, Laura was making a lot of sense. And I had a lot of thinking to do about nice vs. kind vs compassionate and what it means to be all of those things.

Niceness and Kindness

Nice feels like it’s easy. It doesn’t feel like it takes much action. It’s easy to use polite words like “please” and “thank you,” without really thinking about it. It’s easy to have a cursory “how are you,” “Fine, thanks” exchange with someone and not actually pay attention or even care what’s going on. Nice is a lot like “polite.” We’re “nice” to waitstaff, to clerks and to strangers in general (unless we’re Karens and Chads.) So much of what’s nice feels like it’s automatic. I don’t think about saying excuse me when I go past someone or holding a door for someone. Saying “sorry” or “pardon me,” when you talk over someone or you burp, those are “nice.”

“Why is it so Hard to be a Good Person”

I read a story called “Why is it so Hard to be a Good Person,” recently. And this stood out to me.

It is tough to be a good person, but it is not the act itself that is difficult. Clearing your tray at a food court, holding the door for someone, or treating someone with respect are simple tasks. All it takes is a little time and some calories.

It’s true. Those things usually don’t take a lot of effort. At least not extra energy beyond what I’d be spending anyway. Even clearing the tray, which is still a little challenging for me to do if I’m using my wheelchair. It might be hard to actually do it, but I don’t need to think about doing it. It’s just what you do when you’re done.

But are those the things that make a good person?

Kindness takes Work

Kindness takes a little work. It addresses the need at hand. Kindness is offering half your sandwich when someone is hungry. And kindness is what some of the CNAs are giving me here. The homemade tamale, the blanket, all the little treats I got for Christmas. The invitation to celebrate New Year’s with the staff. That’s kindness. Kindness takes a little effort not just in the action, but to become aware of the need for the action. Plenty of people wished me a Merry Christmas or a Happy New Year. That was nice. Noticing that I had Hanukkah decorations up or remembering that I don’t celebrate Christmas,? That was kind. Kindness is non-transactional giving. It doesn’t have to cost anything. I thought I knew how much kindness matters, but after five months of the kind of vulnerability that I’ve been living with, kindness matters even more.

I keep thinking that in the position that I’m in, I have nothing to give. I’m still recovering from a near-death experience. I’m heavily reliant on someone else to assist me with a lot of self-care tasks. Being able to have a real shower instead of a bed bath was an achievement worth celebrating. Instead, I’ve been discovering how much I can give. Someone’s daughter is planning a wedding, and I make sure to ask about that every once in a while and to remember things like where she found her dress and that it’s ivory not white.

Kindness takes Time

There’s someone going through treatment for bladder cancer here. He’s been through chemo and radiation and will meet with the surgeons and medical team who will be removing his tumor next week. I’ve made sure to remember the date he does that and the date of his surgery. And this morning, I listened to ten or fifteen minutes about his bowels right now, and what’s happening because of the cancer. And it was gross. I really didn’t want to hear about his bowels while I was eating breakfast. I could have stopped the conversation. But he needed a non judgemental listening ear for a few minutes, and I could do that. My scrambled eggs could wait.

I can’t offer anything but sympathy and a few thoughtful, hopefully comforting words. But I can offer those. And doing so makes me feel like I have some agency; just the same as when I receive that kindness from others.

Kindness and the Path to Justice

Sitting here, on the receiving end of so much kindness has led me to give a lot of thought to compassion and justice and that idea of compassionate pain that Laura had talked about. Giving to the food bank is kind. Giving the food bank what they really need is compassionate. Working to make changes that will end food insecurity and ensure everyone has nourishment is justice. Kindness and compassion are part of the path to justice, but I think sometimes we get to compassion and think we’ve done enough. I know I’ve done that before.

Kindness and Grief

Chronic illness has come with a lot of grief for me. One of the big things I felt like I had to give up was activism. And yes, I have had to give up the kind of in-your-face, in-the-streets, activism that I have done since I was a kid. The kind where you hold up big signs and get your hands dirty. And sometimes try not to get arrested. It’s not a safe place for me to be right now. The crowds, the accessibility, there are a lot of things about it that makes it off limits right now.

I’ve spent a year writing things that try to put a human face on complex political issues. To write about the impact things like denying access to LGBTQ information can have. And all along I thought it was compassion combined with anger. I was missing out on an important detail about the work I’m doing though. I’ve got a platform for justice here. Every article I write that someone reads that changes their understanding of something, every time someone shares one of my articles, I have the opportunity to make a tiny little shift towards creating a more just world. That’s a big responsibility I’ve got there. It’s time to polish up my Doc Maartens, put on my activism playlist and get moving.