When storyteller Sandi Marx begins to develop cognitive symptoms of lupus, she worries she'll lose the aspects of her personality that she values most.
Sandi Marx, a retired talent agent, has been touring the country, telling stories, for the past three years. A multiple Moth story slam champ, she has been featured at the Women’s Boston Comedy Festival and regularly performs on shows such as Risk, Yums The Word, Women of Letters, Soundbites, and countless others. She can also be heard on podcasts for all the above and also HotMic with Dan Savage. Most recently, Sandi was featured on PBS for “Stories From The Stage." She is thrilled to be back at Story Collider, her favorite show for brainiacs.
This story originally aired on August 3, 2018 in an episode titled “Me vs. My Brain: Stories about losing your self.”
Story Transcript
“It could be a lot worse.” I say this a lot. I say it all the time. You see, I have lupus and it’s systemic so it affects a lot of me. And when I run into friends or family on the street sometimes and I look like I worked the graveyard shift at a graveyard, and I see the look. It’s that hound dog, like a real hound dog, the one with the pipe and the hat look. And I always think, “Do not feel sorry for me because I don’t feel sorry for myself.”
I thought I did a better job covering the fact that I look so shitty because I wear so much makeup. I’m like a concealer, like an angry clown concealer that I don't notice is that bad until I get home and I think I’m like one of those cheesy velvet paintings that you buy. But anyway, this is what I do. But when you live with something that’s chronic, you have to deal with this stuff. And I never know if it’s a good week or a bad week and it’s been twenty years of this shit, so I just kind of live with it.
Now, I happen to have some ridiculously creative and artistic friends. One of them is my friend Nanette who decided when she saw that I needed to work with a cane because I was having trouble with my hip, she took my cane, she painted it red, and then she bedazzled that fucker. I mean like covered it with those jewels you get in the bubbles when you put the vending machine money in.
It was so sweet and I know she thought it would make me feel jaunty or something, but when I used it, I looked like an old woman who is a pimp running women. Like running women to the Jewish Federation, some sort of aged home.
But I know her heart was in the right place because I get it. Nobody wants to see their friend look like a piece of crap and I don't want to see myself look… I’m very vain. I do a lot of work to look this average. I do. I do.
So I have a ritual, which is something that anyone with chronic conditions probably does. When I wake up in the morning I do a body check before I get out of bed. I want to see what’s working, what’s not working, what might look funny so I’m thinking hips, my back, my feet. I get these horrible rashes I’m always checking. I never really know what’s going to be the event of the day.
A couple of weeks ago, this happened where I woke up and I saw my chest was covered in red. I went into the bathroom to get a closer look and it wasn’t until I started washing that I realized that it was Cherry Garcia. It was Ben & Jerry’s. That I was just eating my feelings the night before. There was like an empty tub by the side of my bed, the detritus of my misery. So sometimes it works, sometimes not.
But you have to understand, someone like me who was so athletic, I was a dancer as a young person. Not only was I a dancer, I was a professional fucking cheerleader for the New York Cosmos Soccer Team with Pele and Giorgio Chinaglia.
And I used to go to Giants Stadium in New Jersey, which is probably named now like, I don't know, Enron or Staples. I don't know what it’s called. But I would go there and I'd have to wear this ridiculous costume and carry very heavy pom-poms and run the length of Giants Stadium.
I don't know exactly the yardage. It’s a lot of yardage. And I did that in like high heels and hot pants while I had to yell things like ‘defense’ and I had to spell names, like Canali, and I was never out of breath, because that’s what you're supposed to do when you're a cheerleader.
Now, when I meet my friends for lunch or dinner and I’m huffing and puffing and they ask, “Why were you rushing for?” I would wait and I'd say, “I wasn’t fucking rushing. I parked my car right out in front. I have a systemic disease. My lungs, everything, my heart, my bones, my head, my brain. We’re all affected.”
And it isn’t easy. This body that gave birth to three children, the third one while I was in an office meeting because I work full time. While I was in that meeting I was timing my contractions while my staff looked at me and I was holding it up like, “You see? This is hard work, you bitches. Don’t complain. Don’t tell me you have a headache. I’m having a baby now.”
Okay, so this is a body that I really… I mean, it was like my reformed fucking temple. This body was my everything and now I didn’t know from one day to another what it was going to be like.
But that wasn’t the worst part. The worst part was when I got what a lot of people with autoimmune diseases know is what we call fog brain. This is when you start realizing you don’t remember specific words that are in your everyday vernacular. Like not being able to say ‘hat’ or ‘door’. It just escapes you.
And slurring your speech and realizing that your balance is off. I started getting bruises on my arms and my thighs because I couldn’t clear doorways because my depth perception was off. I was like a cat whose whiskers got cut. And I was freaking out.
Because I could live without going back to tennis or playing sports or spin class. Screw it all. It’s overrated. I don't need to exercise. I’m already thin. It doesn’t matter. But my brain, my mind, my sarcasm, my cutting wit, this is all I had left because this was something that was my stock and trade. So this is what happened.
I started thinking about my loss here. Now, I was never really that smart, not like everybody here. When I was in high school, I think I had the record of the lowest SAT scores. Not easy. 730 combined. If you’d taken the SATs you know you get 600 a walk in the door, so that means I either fell asleep or just had no idea what I was doing.
But what I did have was a sparky personality. And I won a scholarship and a medal called the James Hackett Medal for Oratory in spite of the fact that my high school did not have a debate team. I think that they gave this to me because I was the only one who could renegotiate all of my grades and the teachers thought a tip of the hat.
Now, not only was I efficient at that, I was the class comedienne at Forest Hills High School with 1600 graduates in my class and I beat out boys who could light their fucking farts. But I had this ability to make fun of other people in a way that wasn’t too harmful but people would laugh and I just had an understanding of how the world worked.
Now, we all learned years later, I’m old, that was called EQ as opposed to IQ which we knew we didn’t have, but it was the EQ that led me to a career running a talent agency with my partners. We did very successfully. I could barely add two digits but it didn’t matter. I was just very good at assessing, making friends, understanding, reading a room, reading a situation and being sort of in control and understanding what leadership really meant. That’s what I did. That was my stock and trade.
I mean, I had an assistant who had his master’s from Columbia getting my coffee and I did not graduate at NYU where I attended because I was too stupid to take any of the prerequisites, like Spanish and math. Didn’t matter. Here I was feeling pretty good about myself and now, now I’m not. Because in addition to not being able to climb a flight of stairs, I’m not thinking. The one thing that I coveted. My sass, my sarcasm, my wit. It’s gone. And this is not something I can manage.
Now, I have had the same doctor who I adore for the last 20 years and he saw what this was doing to me. I was like a former husk of myself because I was starting to doubt that I even mattered. Like why am I even here? So he decided to do what a lot of doctors would do and he prescribed an antidepressant. Because he thought, well, we’ll just make you feel a little better. That was the worst mistake because now I have this sort of flat affect and I lost whatever sharp edge I even had. It was like becoming some sort of beveled of stupidity and now I’m really not myself. I still can’t walk very far and I’m still huffing and puffing and now I’m like stupid.
By some miracle, and I had no idea how this came up, but my doctor said, “There's this drug that’s been around forever. It’s called Acthar and it was originally created for babies who have epilepsy. But I've been starting to get results with patients who have a few different autoimmune diseases, like lupus or MS, where they're feeling relief with their rashes, with their swelling.”
And I said, “Bring it, baby.”
Now meanwhile, this drug is super expensive if it’s off-shelf use. If I were a baby with epilepsy, it would probably be covered. But my insurance, which is one of the big ones, said, “No, we’re not covering it. It’s not really mandated for your disease.”
So I say, “Okay, what do I do now?”
I happen to have the kind of doctor who’s a friend and kind. And he said, “I’m going to do it for you in my office as sort of humanitarian effort and we’re going to run it like it’s a study so I can get away with getting the supply.” I’m still sort of thinking maybe this will work, maybe this won’t. I’m not really sure but I say fine.
So he starts injecting me. It’s once a week. It takes a couple of weeks. But then about the third week something crazy happens. It’s like do you remember in the Wizard of Oz when the scarecrow gets to emerald city and all of a sudden the wizard gives him a brain. And he starts like E pluribus unuming, I don't know, EMC-squaring, which I don't know what any of that means.
But all of a sudden, at around the month mark, I started realizing that my brain was far and away better than it had ever been even when I was mildly intelligent. It was like I was thinking in a way that was just completely different. I was focused. I was understanding. I was analytical. I was retaining information, like your name at a party. I was remembering stories you told me a month ago that I never would have remembered. I stopped slurring my speech. I wasn’t bumping into furniture.
I know it was this drug, which probably was because it’s mostly steroid, I’m sure, and it affects all of those receptors in your brain that probably are in that part of your brain that are creative and for speech and whatever the hell that is because I’m not a neuroscientist. But whatever it was, it was working.
And all of a sudden I could do every Jeopardy answer question. Not an answer. It’s a question. And I would be yelling at the contestants like, “You moron! You should know that answer. It’s Gustavia, Saint Bart's.” Whatever it was.
And then I was starting to do the crossword puzzle in the New York Times until Thursday. Not in ink, but I could get to Thursday. Which for me... I mean I’m not that smart.
And then I started writing and writing and writing, because this outlet, I'd already retired, I wasn’t really well enough to keep my career, my job, so I'd been home. And now I started writing these stories and I started telling my stories.
And I realized that I was becoming this other person. I started thinking, “What happens if this is really like Flowers for Algernon?” I don't know if any of you are old enough to know that movie. But what if it’s really great and then I’m on a swing eating a lollipop like Cliff Robertson in six months? Because I’m a Jew. We worry about everything. I didn’t really know where this would go.
Well, it’s been two-and-a-half years. I've written about fifty stories. I tell them all over town. Some of them make sense, some of them might not. I don't know. My family feels more comfortable because they see how happy I am. I have a lot of limitations but I do a really good job whenever I can to hide them. And I've really understood and realized at this point in my life I don't know what my future is going to bring. It’s definitely the kind of disease that gets worse year after year and I understand that there are limitations that I've had and I will continue to have, but it’s not that bad. I have the clarity to understand that as I stand up here in front of you and I can tell this story and it makes somewhat sense, then it’s not that bad. Thank you.