Mondegreen

There’s a line in the movie Hairspray from 2007 uttered by Miss Maybelle (played by Queen Latifah) when her son Seaweed brings white classmates home from school with him. Seaweed introduces Penny to Miss Maybelle and Penny says, “I’m very pleased and scared to be here”. “Here” being a predominantly black neighborhood. Maybelle’s reply was, “Now, honey, we got more reason to be scared on your street”.

 

Since the first time I saw the movie, this line has been rolling around in my mind.

 

Like y’all, as I have aged and had more life experience, my thoughts and opinions have evolved through the years. Things that I thought to be true simply aren’t true, either because I initially learned them incorrectly or because the world has changed. Conversely, things that I thought weren’t true, are true.

 

I’ll start with something easy and mostly relatable to illustrate my point. You heard a great song as a kid. You learned all the lyrics. You have been singing this song for years, perhaps decades. One day you hear the song performed by a different artist and some words sound different to you. You take to Google, and WHOA! You realize you have been singing different words forever!! 

 

What do you do with that information? Do you argue with Google? Do you rant on the internet about how XYZ changed the lyrics to this great song? Chances are, you are a reasonable person, and you say, maybe sheepishly, wow, I’ve been singing the wrong words all these years. Now that you have this information, do you continue to sing the wrong lyrics? Of course not. You accept that you learned (or heard) the lyrics wrong and move on.

 

Why is it so difficult for us to translate this premise to other issues? Why do we refuse to see another side if it’s different from what we know? Why can’t we listen to new information and make informed choices? Why do we dig in our heels and defend our position when faced with contradictory information? Why can’t we admit that we are misinformed? When someone presents us with facts that are the opposite of what we thought to be true, why do we continue to hold onto archaic, misinformed tenets?

 

Why are we so afraid to be wrong?

 

Some years ago I wrote a Facebook post about white privilege. I wrote how when I first heard the phrase, I was indignant. I wasn’t privileged, how dare someone call me privileged! At some point, I heard ~really heard~ the word white and understood that white privilege is vastly different from having means. From there it was easier to open my eyes, my mind, and my heart to acknowledge that white privilege exists, racism isn’t gone, and yes, I had been wrong for years. In short, my outlook evolved.

 

I am ashamed of how long it took me to realize this. I went to a great school, and I had no idea that my friends of color were dealing with racism. I worked in a store where the clientele were predominantly people of color, and it never occurred to me to treat any customer any differently because of how they looked. We lived in Chicago, and we had friends who were from all corners of the world. It never occurred to me that any one of them was facing bigotry. Because of my limited scope, seen through the eyes of a white person, there was no racism because I wasn’t racist. I didn’t see it happening to my friends. I honestly thought racism was a thing of the past.

 

Then we moved back to Buffalo.

 

I was genuinely surprised by how segregated my city was (and is). Was it like this the entire time I lived here before leaving for Chicago? The answer was yes, yes it was. That, my friends, is white privilege in a nutshell. Having the luxury of being oblivious to the fact that the evils of racism are alive and well is the very foundation of white privilege.

 

I hope that you can be open to learning the hard things. I hope you are willing to have the hard conversations. I hope you are willing to evolve. I hope I continue to listen, learn, and evolve.

 

I hope.

 

 

 

 

 

 

 

 

 

 

 

 

Churning Butter and Other Musings

One time I was filling out a form online and I mistakenly clicked “start over” instead of “continue”. Of course, everything I had just typed in was gone and I was annoyed. Grumbling under my breath about the placement of the buttons while I was redoing the form, I stopped typing. At that moment, I had a shift in my way of thinking. Yes, it’s true that I HATE redoing things for no good reason, it’s also true that it’s only some keystrokes to complete it. It’s not as though I was redoing an entire cuneiform tablet or a mural with hieroglyphics.

Things like that make me question whether I would have survived in ancient times or even fairly recent past times. On those rare occasions when the power goes out, I sort of lose my mind. It’s usually too dark to read, and everything else I think of doing requires electricity.

Inevitably, my mind wanders to other things such as, how did people with MS manage without modern conveniences? We’ve known about MS for just over 150 years, but I would hazard a guess that it’s been around for much longer. How did the pioneer woman with MS churn butter? How did the knight don armor in the summer?

Of course, like free word association, other questions arise. Here it is 2022 and people don’t fully grasp what MS does to a person. How on earth could someone in 1653 explain that they couldn’t lift the pail of water from the well because they were just too weak? How could someone in 1778 explain that he couldn’t wear the wool uniform in the summer because it was way too hot? How could an infantryman explain to his CO in the civil war that he couldn’t march 200 miles in 17 days?

If I had no air conditioning, I would likely be incarcerated for manslaughter, or at the very least assault. When I am overheated, I am this/close to turning into a rabid animal. How did people with MS function before Mr. Carrier invented air conditioning?

How could Miss Eliza convince anyone she couldn’t walk? I imagine she looked fine, except that she couldn’t walk. How did Henry the VIII’s chef explain he forgot about the venison cooking and it burned? I cringe at that scenario. It’s not like there was Door Dash back then.

People with MS are (sometimes) miserable in modern times. I can’t imagine living in the past with MS. I know in those 10 years (in the 20^th and 21^st centuries!) I spent searching for an explanation/diagnosis, I really began to doubt myself. After years of hearing that I was “fine”, I was somewhat unsure if there was anything wrong. I wonder how people in the 14^th or 19^th century dealt with having MS, especially not knowing it was MS? In my case, not knowing what was wrong with me was maddening. I can only imagine that people thought themselves cursed; that there was witchcraft or voodoo at work. One could argue that they were indeed cursed- haven’t we all felt cursed at one time or another?

Being Aware

With MS Awareness month (that would be March to you civilians) almost over, I have been thinking about what I should write. How to make you more “Aware”. Truth is, nothing I write will matter. 

Yay, you know about MS. Yay, you know some of the symptoms. Yay, you might have a vague idea of life with MS. Unless you have it (and to be crystal clear, I don’t wish this on ANYONE, and I mean I wish NO ONE EVER got the MS diagnosis- not even my worst enemy), you won’t fully understand. MS Awareness Month is every month for me. I am painfully aware of MS twelve months of the year. I don’t mean this in a “poor me” way, it’s just factual.

Conversely, while there are similarities with other diseases, I don’t fully understand them on a deeply personal level. I know people with Rheumatoid Arthritis, with Lupus, with Fibromyalgia, with Depression, and with other chronic conditions. I sympathize, I commiserate, maybe we even have a symptom or two in common. But I don’t know precisely how they are feeling. One thing I don’t do- ever – I don’t ever suggest how they manage their disease. I may ask if they heard about a study or a new medicine, but I don’t tell them what they should be doing. EVER.

I don’t grill them about every treatment they have ever tried, I don’t chastise them for stopping a treatment for whatever reason, and I don’t make them feel like they should do more to “cure” their condition. I don’t tell them that my neighbor’s cousin’s friend’s middle school teacher ate nothing but marigold petals and it cured his disease. I don’t make that person feel inferior for not trying the marigold petal diet to “cure” their incurable condition. I know it's difficult enough to live with a condition that's unpredictable and incurable. I don't want to add something else to deal with by badgering someone.

So in a nutshell, I think I figured out this “Awareness” thing. I would respectfully ask that you not offer “helpful advice” that includes suggesting supplements, diets, getting more rest, sleeping less, exercising more, drinking water, choosing to be happy, going outside, or smiling more. I would respectfully ask that you don’t chastise the person for not trying your suggestions. I would respectfully ask that you don’t talk to the person as if it is their fault they have the disease. I would respectfully remind you that if you don’t have that condition, you do not know more about their condition than they do*.

If a person decides that they want to be honest with you when you ask, “how are you”, please know that this person trusts you, appreciates you, and feels safe enough to tell you the truth. PLEASE, please, please be mindful of that when listening to their answer. Please know they are not looking for answers or suggestions, they are unloading a burden. Please let them talk.

 

*** PUTS AWAY SOAPBOX***

*If you are a specialist in that field, there’s a chance you might know more, but believe me, no one does more thorough research than a person diagnosed with an incurable condition.