Me vs. My Brain: Stories about losing your self

This week, we're presenting stories about what happens when our own brains keep us from being fully ourselves. 

Part 1: 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. 

Part 2: Chemist Toria Stafford's untreated mental illness starts to overwhelm both her science and her personal life. 

Toria Stafford just finished her PhD at the School of Chemistry at the University of Manchester. Her research looks at lanthanides, uranium and other radioactive actinide elements by emission spectroscopy to further understand processes and fingerprint species relevant to the nuclear fuel cycle. She has a passion for science communication, public engagement and women in STEM advocacy, jumping at the chance to take part in events throughout the UK. Outside the lab, Toria enjoys reading sci-fi/fantasy books, watching musicals and eating chocolate.


Episode Transcript 

Part 1: Sandi Marx

“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. 

Sandi Marx tells her story at Caveat in New York City in March 2018. Photo by Nicholas Santasier.

Sandi Marx tells her story at Caveat in New York City in March 2018. Photo by Nicholas Santasier.

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.


Part 2: Toria Stafford

I have always loved science, even when it wasn’t one of the cool subjects at school, I loved it.  So when I chose to do science at secondary school and on to do chemistry at university, it was only really ever the only thing I was going to do.  I actually even met my boyfriend at a University Open Day.  He was the tall, dark, handsome one that you could tell lifted weights at the back from the same tall group as me.  Very lucky. 

Although we ended up at separate universities, we stayed together.  And when I started university I thought life couldn’t get any better. 

At the end of my first year, I was diagnosed with several food allergies.  I was given this huge list of things that I shouldn’t be eating and things that I have to now avoid.  Although the science had always been there and I'd avoided eating nuts for quite a while, something about it being medically diagnosed flipped a switch in my head.  In a very short space of time, I drastically changed in me. 

I saw contamination, or what I thought was contamination, everywhere.  I thought that anything that I hadn’t personally cleaned and scrubbed was contaminated and dirty.  So in response to all of these thoughts going through my head, I started obsessively washing things. 

It started with my hands.  I had to use a particular soap that somehow in my head I had approved for use.  Then I used to have to wash my hands in a particular sink at university using this particular soap.  And then how many times I had to wash my hands increased.  Three, five, seven, double figures, twelve, fifteen.  It got to the point where my hands were dry, cracked and bleeding from the excessive washing. 

But it didn’t stop there.  I used to come home at the end of every day, take a shower, and I would scrub my skin until it was raw and stinging because I felt dirty, although there was nothing on me. 

And I would always wear something with long sleeves so that I could use those sleeves to handle anything that I was scared of.  At this point, that was pretty much everything.  Do you know how difficult it is to flip through a lab book through your sleeves?  That’s what I was doing every time I had to handle it outside of the lab. 

At the time all of this was going on and going through my head, I remember there was a video going around on social media and it was of this woman who was trying to open a bathroom door without using the hands that she just washed.  She was using elbows, knees, feet.  It was pretty funny to watch, but all I could think of when I was watching this video was, “That’s me, except with everything, not just the bathroom door handle.” 

And all of my friends were laughing at this woman.  I spent countless nights lying awake thinking, “But they're laughing at her.  What if they discover my secret?  What if they discover all of this thing that’s going on in my head that I don't even understand?  What if they turned around and had the same kind of thoughts about me?  What if they started laughing at me?”  That terrified me. 

These thoughts continued and it got to the point where my mood was suffering.  Everything was suffering.  So after a lot of coaxing by my partner, I finally went to the doctor about six months after my allergy diagnosis, and I just completely broke down in his office.  I needed help.  I couldn’t do this anymore.  I couldn’t cope with any of it.  It was too much. 

The diagnosis?  Severe anxiety, depression, and obsessive-compulsive disorder or OCD.  The worst bit about the whole situation, I was too scared to accept medication to help with my condition, or conditions.  At this point I didn’t even have paracetamol or ibuprofen because I was scared about taking them as well. 

So when the scientist in me, although at this point it was very, very buried, kind of thought the medication would be an option before I'd seen the doctor, I did what any scientist would do and I spent a while researching it.  But that was my mistake because it became just another obsession. 

I would spend hours and hours and hours going over the same things over and over again, trying to persuade myself that it would all be fine.  You wouldn’t get all of these side effects.  It will do you good.  So although I came across all of these benefits that I could have from taking them, I saw all of the negatives and that’s all I focused on.  Just the negatives. 

Toria Stafford tells her story at Cambridge Junction in Cambridge, UK, in March 2018. Photo by Claire Haigh.

Toria Stafford tells her story at Cambridge Junction in Cambridge, UK, in March 2018. Photo by Claire Haigh.

And when I told Conrad about this he begged and pleaded with me to accept the medication.  But I was so scared just the mere thought of medication made me feel sick and dizzy. 

But I did accept some help.  I started counseling and also cognitive behavioral therapy or CBT.  Starting counseling is one of the hardest things I have ever, ever had to do.  We talked about some surface issues but we never got to the root of the problem, because one of the things about counseling is there's only a limited number of sessions that you can have.  So not long after finishing, my mood started declining and I was basically back to square one.  I had no idea what was going on or where this had all come from.  But I got to have a good cry. 

The waiting time for CBT, because it’s so in demand, I had to wait over a year before I could start.  By this time, my obsessions and my compulsions were an all -time high and my mood had reached an all-time low. 

When I moved into the student house the summer before and I started my CBT, I scrubbed the entire house top to bottom.  It took about a week before I was happy to set foot in there and start moving my things across.  And even then I wasn’t happy with a lot of it and I would… I had particular places for things.  I don't know why they had to go in that place, they just had to.  There was no other way about it.  I wasn’t happy if they weren’t in their place. 

And even after all of this I imposed a strict set of rules for anyone entering my bedroom which was my haven, the only place I felt safe.  Any shoes or socks that had touched the carpet or anything outside, not allowed in the bedroom.  Nothing from outside is allowed to touch the bed.  Everything had its particular place and I would actually lose sleep if I knew something was out of place. 

My partner Conrad, when he came over, had a little square on the floor where he was allowed to put his bag.  And he had a separate set of towels just for him because I couldn’t know where he put the towels down in the bathroom and that might be the wrong place, so they were dirty and contaminated. 

Every time after he left, I would scrub the floor where he had left his bag.  I would change all of the bed sheets and I would rearrange the whole room to exactly how it was before he came.  I'd basically remove every trace of him not because I didn’t want him there, not because I didn’t love him, but just because that’s what my compulsions told me I had to do to be content.  As content as you can be in that situation. 

In my CBT I started making progress.  We set small weekly goals, which is fine.  But when I say small I really mean small.  One of my biggest obsessions was food labels because of where my kind of problems came from.  I would read things over and over again and sometimes I'd even read it, a food label, like a hundred times and I still wouldn’t be happy eating the food. 

I even had my own set of plates and cutlery and things like that back home that I would use when I went to stay with my mom because, I don't know why.  I just had to.  I just had to have that.  I wasn’t happy using the cutlery and stuff I'd used for years. 

I got a call one night around midnight from one of my sisters in floods of tears.  I knew instantly what it was about.  My mom had lost her own battle with her demons and passed away.  She was the perfect example of someone who was so in denial about the problems that she had that by the time she realized, it was too late. 

I didn’t handle this very well at all.  I pushed everything that I was feeling deep down inside me.  I didn’t confront my feelings, I didn’t grieve properly, I just said I need to be there for my sisters.  No other way about it.  You can’t show your emotion. 

So that’s what I did.  I got on with everything, I went back to uni and, apart from an email that I sent to one of my tutors so that it could go on to my university records, I didn’t say anything.  I didn’t mention it to my friends.  Nothing. 

I got on with revising for my exams and that Easter I took my exams and it was the best exam season I had my entire undergraduate degree. 

That summer I was doing a research placement at the university and I was living on my own because nobody else was around during summer.  That’s when everything hit me and I went on this huge downward spiral, only much worse than the times before. 

It got so bad and I was so wrapped up in my own head that after a few months I had pushed Conrad away.  I begged him on the phone to stay, trying to convince him that I could change.  That I could be there for him.  That I could be a girlfriend, not a burden like I had been.  But he didn’t believe me because he had heard it all before. 

During the months that I had been, or years at this point, that I had been suffering he was my lifeline.  He was the only person who knew the full extent of everything that was going on and one of the only people I had told.  And now he was gone.  And the only person to blame was me.  I pushed him away. 

I was numb.  I didn’t know what to do.  My flat mate at the time went home for a week and that week I didn’t get out of bed.  I didn’t shower.  I just lay in bed staring at the ceiling, thinking everything through, replaying the years and years in my head thinking what I could have done better, what I could have done differently. 

I maybe ate some dry cereal out the box once a day if I was lucky, maybe a glass of water every now and again.  And I didn’t even make it to the Christmas meal with the research group I was doing my master’s project with because I couldn’t drag myself out of bed physically or mentally.  I was in a completely different state of mind that I couldn’t see a way out of and didn’t see a reason to drag myself out of this. 

Photo by Claire Haigh.

Photo by Claire Haigh.

When term started again, I resumed my CBT.  I made small progress very, very slowly, but I did.  But as with the counseling, there's only a limited number of sessions that you can have so they stopped.  But there was one thing that kept me going and kept me progressing and that’s Conrad. 

A few months after our breakup, we actually realized that both of us were better together than we were apart.  We spent a long time talking everything through and we decided to give it another go. 

We both made it to graduation at the end of that academic year.  We both got PhDs at the same university so we could be a lot closer.  And we ended up moving in together and everything like that. 

Since then I have made slow and steady progress.  It has not been easy.  I’m not going to lie.  But I have made progress and that’s something that I am proud of. 

At the end of last year, I had another dark moment.  But this time after a few weeks of being in a dark place, I decided that I was going to own this.  I was going to take this chance to be better than when I'd gone this low before.  I saw it as a turning point. 

I went back to the doctor.  I broke down again, scared the medical student that was in the room.  But I went, “Give me everything you've got.” 

I went to counseling again.  I haven't signed up to CBT but the biggest step was I started medication.  It was terrifying.  All those side effects that I was scared that I was going to get, I got.  It’s not fun.  Worth it, but not fun.  And I’m getting there. 

For me, recovery has meant owning my fear.  I still handle my lab book with sleeves outside of the lab, which when you're writing a thesis is not ideal.  I still make sure and double-check and triple-check that the front door is locked.  And I still occasionally will have things that will completely set off my obsessions and compulsions. 

But that’s okay.  It’s a part of me.  It doesn’t have to own me and be all-consuming.  I can still be me and live with these conditions.  I've even come to find some positives in it.  The front door will always be locked, and the windows.  And I work in a lab with radioactive material so my contamination control is pretty outstanding, if I do say so. 

I’m Toria.  I suffer with my mental health but I am still a scientist in spite of it all.  Thank you.