Nov. 26, 2022

Perfect Match, Part 1: A Kidney Transplant Tale

Perfect Match, Part 1: A Kidney Transplant Tale

Inspired by saved cards and letters, Michael and his wife Cindy share the tale of her survival – and their daily lives – as lupus led to kidney failure and her first two transplants.


Episode 9 Notes

Perfect Match: A Kidney Transplant Tale, Part 1

The saga of Cindy and Michael begins with a somewhat extreme case of saving past treasures that I couldn't throw out.

It's a piece of paper left under the side door of my family's house in Topsfield Massachusetts in August 1975.  It was scribbled by someone whose many fine (and always understated) qualities made her a celebrity in my high school circle and, later, in my grown-up world.  That's why we call her The Very Famous Nancy.

Nancy's note was my introduction to another life-long friend who happened to live two doors down from Cindy's freshman college room.  That's how it all began.  And that's why I still can't bring myself to shred this.

An even older treasure is the photo below, which shows Cindy as a little girl. I love that this photo lets you you see the person who existed before health problems became so significant.

Despite everything that followed, Cindy never lost that young person's sense of joy and wonder. You can see it in paintings she creates now, and in this crazy kind of map that Cindy sent me after my December 1982 visit to San Francisco.  All the places we went and things we did are represented.  Except there was a little less glitter in real life.

Here's a little sample of the many Cindy letters I saved from those early years -- this one from after we met in college. All of them are in a tiny scrawl, often with made-up words and spellings.  This particular letter let me know that Cindy was taking a class about teaching sign language to people with mental disabilities.  She also informed me that she had accidentally ripped up the sweatshirt that I earned as a coxswain on the college crew team.  

As was so often the case with us, something damaged later was revived.  Cindy sewed up the holes in that sweatshirt with colored thread and, of course, I couldn't throw it out.  So I still wear that 1976 artifact when I'm gardening.

Here's one of the cards Cindy made for me in the early '80s, when she had to admit that she was wrong about something we discussed.

I know there's a photo somewhere of the dinner Cindy made me in the 1980s when I asked for eggs -- and she translated that to spotted quail eggs in a hand-threaded nest of pita slices.  Unfortunately, I can't find it.  But these photos give you the idea of how her creativity was expressed via food.  For the meal below, the bread course started with a message to me -- and dessert was a tribute to my love for gardening.

And here's one of Cindy's theme dinners.  I think this one was based on a book we were reading?  Maybe Moby Dick -- since the cheese course was served over the bathtub where the water had been dyed blue and scented with oils from one of the hand-decorated aromatherapy bottles that she used to sell back then.

If Cindy hadn't received two kidney transplants in those years, I wouldn't have any of the artifacts I saved to remind me of these experiences.  This is yet another reason why we're very grateful to the medical teams that kept her going. 

If you ever want to make a donation in support of the kinds of medical miracles that we experienced, here are some options we recommend:

American Kidney Fund
They get the highest possible ratings from all the groups that evaluate charities.  So you can be sure that donations are well-spent.

Lupus Research Alliance
Another highly rated organization, making good use of funds to explore treatments for lupus.

United Network for Organ Sharing
Well-rated organization that works to improve the organ transplant system.

Tufts Medical Center Giving
Cindy got her first transplant in 1980 at Tufts in Boston.  This is a general link for donating to the hospital; we couldn't find a specific link to donate to the kidney transplant unit. 

UCSF Foundation
Cindy's second transplant was in San Francisco from UCSF Hospital.  Again, this is a general link for the hospital, not for the transplant unit (where two of Cindy's wonderful doctors are still practising). 

Columbia Presbyterian Medical Center
Cindy got her third transplant here -- the one that involved me too.  In this case, you can specifically choose to donate to the Transplant Research Fund – Division of Nephrology


And now... on to the finale of our story in our second kidney transplant episode...

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Will anything get tossed? Could happen. THANK YOU for listening!

Transcript

I Couldn't Throw It Out, Podcast Episode 9

Perfect Match:  A Kidney Transplant Tale, Part 1

MICHAEL SMALL: On today's episode of I Couldn't Throw It Out, my wife Cindy and I share the tale of how she survived five decades of kidney failure and three kidney transplants.

AUDIO EXCERPT

CINDY RUSKIN: You know that in college and in high school, I really didn't think I was gonna make it.  Or even in my early '20s.  My parents were expecting me to die.  I just didn't think I had a chance.  And I lived as if I was going to die.  I never lived as if I had a future.  

SALLY:  Wait a minute.  Did you just say that you and your parents thought you were going to die when you were a teenager?

CINDY:  Yup.  Definitely.

END AUDIO EXCERPT

MICHAEL SMALL:  Coming up is the full story that no one has heard in its entirety, until now.

THEME SONG EXCERPT
 
  I couldn't throw it out
I have to scream and shout
Before I turn to dust
I've got to throw it out
Before I turn to dust
I've got to throw it out
 
END OF THEME SONG EXCERPT

MICHAEL SMALL: Hello Sally Libby!

SALLY LIBBY: Hello Michael Small!

MICHAEL: Well, this week, you're in luck. For this episode of I Couldn't Throw It Out, I reached into my boxes and pulled out one thin folder.  It contains just 14 cards and notes. 

SALLY: Excellent. This will be our shortest episode ever!

MICHAEL: Oh, I wouldn't count on that. Those cards and notes may be short. But they hold a LOT of memories. I can't even think of throwing them out till I tell you the whole story.

SALLY: Don't let me down. I want a good one.

MICHAEL: Consider this. The tale inside that folder spans nearly five decades.  It includes many kinds of narcotics, masses of blood, precious artworks, excruciating pain, absolute joy, big mistakes, big love, bad behavior, many brushes with death, and a magical twist of fate so surprising that if it were fiction, you'd say it was too corny to be true.

SALLY: Oh, I think I know this tale. It IS a big one.

MICHAEL: Actually, I'm pretty sure that nobody knows the whole story. Except me and a key witness who is sitting right here and has been unusually quiet.

SALLY: Cindy Ruskin!

CINDY RUSKIN:  Hi Sally!

SALLY: You're here to tell your tale!

CINDY: Well, Michael's here to tell my tale.

MICHAEL: An arm got twisted.  Now, my mom used to describe this as a great love story.  You like that?

CINDY: Yeah.

MICHAEL: I thought so. And my sister Debbie often said that it was about heroism.

SALLY: I like that version.

MICHAEL: Yeah.  But guess what?  Both those versions are oversimplified and distorted. I'm absolutely convinced that the truth – at least in this case – is much  more interesting than the fantasy.

SALLY: And if you're right, I'm here to certify it.

MICHAEL: Why, thank you! The only way to get the full impact is to start at the very beginning. It's a very good place to start.  It's the summer of 1975.

CINDY: Oy.

MICHAEL:  And it begins with one key person. Sally, s omeone you've known for many years.

SALLY: That part, I figured out. It starts with Cindy.

MICHAEL: Nope. She comes in later. As with so many things in life, the pivotal person is... our friend since 7th grade... 

SALLY: Oh, t he Very Famous Nancy?

MICHAEL: You got it.  Of course, it's Nancy.

SALLY: But if I know Nancy, she won't like this. She'll be very modest and say that she didn't do a thing.

MICHAEL: She did something major. In high school, Nancy used to be a very skilled horseback rider. And I t was through horseback riding that she met someone she thought I'd like.

SALLY: Cindy!  I didn't know you were a horseback rider!

CINDY:  (laughs)

MICHAEL: Okay, that says it all. Nancy's friend was named Maryellen, and we were about to start our freshman year at the same college. So Nancy wrote Maryellen's name on a piece of paper.  And yes, look at this.  I have it right here. On one side, it's some kind of bill that Nancy received for oiling her typewriter. And on the back is a note from Nancy, telling me that she'll miss me and don't forget to write.  But it says, "When you get to school, you've got to find Maryellen.  She's a great kid. So I hope you meet her."

 SALLY: You kept that scrap all these years?

MICHAEL: It's kind of a sickness. I found it in one of my boxes. Well anyway, on my first day at school, I took this piece of paper.  I went looking for Maryellen. I found her room. I knocked on her door. But there was no answer. Then I looked up and two doors down, I saw something that took me by surprise.

SALLY: Cindy!

CINDY: (laughs) And my mother and sister.

MICHAEL: Exactly Here's what I remember: Three were three of you with blond curly hair. You all had extremely strong South African accents. I couldn't understand a word you were saying. It was like another language. And you, I believe, were wearing that crazy striped dress that hung down like a tent.  And you had those striped Alice in Wonderland stockings on.

CINDY:  Stockings? Socks.

MICHAEL:  Whatever they were.  Socks.  And you had some kind of kooky, like, platform shoes – or something.

CINDY: Yeah.  I bought them in… I had just been in Brazil and I bought them in Brazil.

MICHAEL: And with all that curly hair, you seemed very tall.  And I thought the three of you were roommates.

CINDY: My mom would have loved that. I can't believe you didn't tell her.

MICHAEL: Wherever she is, we're keeping her happy. Anyway, when I saw the three of you, I thought, "I am in the wrong school. These people are so weird. And they're so old. I don't belong here. I want to go home."

CINDY:  Mom isn't old.

SALLY: Oh yes you did.  You belonged there. And you'd fit right into "weird."

MICHAEL: Thank you. Later on, I met Maryellen – which was a relief, because she seemed like a normal person. She told me, "You've gotta meet my neighbor Cindy. You will love her."

SALLY:  Wow.  Wow.

MICHAEL:  But I was in no rush to meet someone so weird. Took a few months. Then we went to her room. And do you remember that time, Cindy?  

CINDY: I had mono.

MICHAEL: Yes.

CINDY:  And I was actually asleep.  So I didn't know anyone had come into my room.  And then I woke up and there was a little elf at the foot of my bed, telling funny stories.  He was a very cute elf.

MICHAEL: Well, there were a couple interesting things.  First of all, she did have mono, as she said. So her immune system was already a mess. And we laughed a lot and we didn't stop laughing.  I'd say we hit it off. And we were pretty much  friends from that point onward. I looked it up and we grew up about 7,716 miles apart. 

CINDY: "About."

MICHAEL:  "About." I was born in Concord New Hampshire. And Cindy, you were born exactly three months later in Cape Town South Africa. Was it Cape Town?

CINDY: Belleville.

MICHAEL:  Okay.  We were in different hemispheres. We were in different time zones. But we had a lot in common. I made a little list, just to get things started.

- We both were nerds who loved school. 

CINDY: My dad wouldn't say I was a nerd, just by the way.

MICHAEL:  I would say you were a nerd. We both loved reading. 

- We both grew up in the countryside. And our moms would send us out in the morning and tell us to come back for meals. Pretty much.  Like "Go outside. Come back when you're hungry."

- After you moved moved to the U.S., we were both at public high school in Massachusetts, and we were about 25 miles apart for 10th, 11th, 12th grades?

CINDY: Correct.

SALLY:  You both had three siblings.

CINDY:  Yes!  Two sisters and a brother.

MICHAEL: And I think the key point is, we both liked to keep busy with projects.

We had a lot of projects.  So, as soon as Cindy got out of that bed and was feeling better again, we started doing things.  I think we both saw life as kind of an adventure. A lot of things were new to Cindy because she had grown up somewhere else. And a lot of things were new for me – because I had never left the town of Topsfield, Massachusetts. 20 miles away! And so there were so many things we wanted to try and see.  We went on that rock climbing adventure.  We decided to go with the rock climbing club.

CINDY: And we were the only two that couldn't get up the rock.  Well, maybe Michael just stayed with me.

SALLY:  I love it.

MICHAEL: No. I was too short.  I couldn't reach anything.  And thenwe liked the sound of… on the blue line subway, it said it ended at Wonderland. So we took the train there. 

CINDY: Oh, Wonderland is so good!

MICHAEL: Remember what happened there?

CINDY:  Yes, we went on that ride where it spins and you lean against the wall and you get stuck and the floor goes down…. The guy I think was on crystal meth or something.  But he totally forgot about us.  So we were going round and round and round.  And I definitely was about to throw up.  I mean, it was unbelievable.  When we got off, didn't he offer us some crystal meth?

MICHAEL: Angel dust.

CINDY: Angel dust.  Okay.

MICHAEL:  So that was fun. We took that intellectual history class where Cindy got an A…

CINDY: Oh stop it.

MICHAEL: … and I got a B- -- and I read every single freakin' book carefully.

CINDY: I don't know if I got an A.

MICHAEL:  Yes you got an A.  And Cindy…

SALLY:  Did she rub it in?

MICHAEL: She didn't read one of the books.

SALLY: Did she gloat?

CINDY: I had read some of the books.

SALLY:  Michael always said you could take tests and just ace them without doing any of the studying.

CINDY:  No he's talking nonsense.  I had read Virginia Wolf.  So I could write about Virginia Wolf.  

MICHAEL: Well, Sally – I don't think you'll be surprised. But Cindy was very entertaining. One of the things she did -- she made up her own alphabet. Because she was tired of the normal alphabet.

SALLY: Oh, how did that work for ya, Cindy?

MICHAEL:  How did it work for you?  I'd get these notes like hieroglyphics.

CINDY:  Well it's because I was taking a course on the history of the English language. And we wrote out pronunciation. And that was just the beginning of an exciting new language because, you know, you could turn things into something else.

SALLY:  Did you take a little from cuneiform, steal a little? 

CINDY: No, I took it from Doodlemania.  

MICHAEL:  I'm pretty sure I have some of them in my boxes. But all I could find was a lot of letters, with tiny little scrawling, and little pictures drawn on them.  Oh yeah.  I have thousands of these in there.

CINDY:  Oh please let's throw those out.  I'd like to throw them out before I even read them.  Can I have that? 

MICHAEL: No.

CINDY:  I want to shred it. 

MICHAEL: No, but in this letter… the reason why I saved this one… is because it says…. Cindy's family had moved to Bermuda. For spring break, Cindy invited me to visit her family. They had just moved to Bermuda. And it says, you have to come to Bermuda and visit.  Which I did.

CINDY: Twice.

MICHAEL: Yes.

CINDY: He'd never been on a plane before he came.

MICHAEL:  Right.  I'd never been on a plane.  Cindy, that was kind of your reckless phase then. There were coral walls along the water. You would go down and you'd run across a little bit of beach and then you'd jump up – with your rock climbing skills – and climb up the other side.  And when I went to follow her, I was too short to grab where she climbed up.  And the wave came in and smashed me against the coral. 

CINDY:  Oh, I’m sorry.  No, I really am sorry.  This does not justify that at all. But you know that in college and in high school, I really didn't think I was gonna make it.  Or even in my early '20s.  My parents were expecting me to die.  I just didn't think I had a chance.  And I lived as if I was going to die.  I never lived as if I had a future.  And I took crazy crazy risks.  And I’m really sorry that I dragged you along on some of them.

SALLY:  Wait a minute.  Cindy. Did you just say that you and your parents thought you were going to die when you were a teenager?

CINDY:  Yup.  Definitely.

SALLY:  Oh.

MICHAEL: I think that brings us to a key detail in this story. There were some big differences between Cindy and me.  Particularly when it comes to health. I had some serious illnesses. I had some hay fever.  A very severe poison ivy allergy. Very sensitive digestive system. And, to top it off, I had an overlapped toe. But Cindy had only  minor problems, like she had tuberculosis when she was a baby.

SALLY:  Oh my God.

MICHAEL: Mm-hm. Then she had severe lupus – which led to extreme sun sensitivity, kidney failure and prescriptions for huge doses of steroids.

CINDY:  Massive in those days.  Massive.

MICHAEL: And Cindy didn't get diagnosed with lupus till she was 15 – after she got to the US. But I noticed a pattern when she told me about her early years. Cindy, can you tell us about your birthdays when you were a little girl?

CINDY:  When I had giggle-itus?

MICHAEL: Yes.

CINDY:  That wasn't necessarily birthdays.  That was when people came over.  Friends would come over.  But I would often be in bed because I was running a small fever. And we would all just crack up laughing.

MICHAEL: So the point is, she was always laughing.  But she has a lot of memories of being in bed because she wasn't well.

CINDY:  Well, it was not really that I didn't feel well. It was just very short times in bed.

MICHAEL:  Anyway, your parents wanted to leave South Africa because they hated the Apartheid government.  And that was in 1972?

CINDY:  Correct.

MICHAEL:  You weren't diagnosed with anything at that time, were you?

CINDY: Well, we knew there was some kidney issue.

MICHAEL: Which became switched later on especially after her parents came to the U.S. to look for a place to live and they left Cindy at a camp in Switzerland.

CINDY: We were basically climbing mountains and the last mountain we had to climb was Mont Blanc.

CINDY: And – should I tell this?

MICHAEL: Yes.

SALLY: Are you kidding me?

MICHAEL:  Yeah, but listen.

CINDY: So I was probably the youngest person there.  At a certain point near the end, I was really feeling terrible.  And I just… you know, I assumed it was altitude, and also I didn't know that the sun was an issue for me.  Anyway, I was pushing and pushing and we were very close to the top and I couldn't do it. I just couldn't do it.  So they took me off the ropes and left me. And the rest of them went up to the top.  And I just lay in the snow in the sun. When they came back and picked me up, by the time we got down the mountain, I was very sick and had to be hospitalized. 

MICHAEL:  She's a 15-year-old English-speaking person alone in a place where they speak French. And basically, being in the sun on the white snow is like poison for someone with lupus. 

CINDY: It aggravated my lupus. But of course, I didn't know I had lupus.

MICHAEL:  Yeah.  And I want you to know that Cindy underplays it as she always does.  They had to carry her down.  She was REALLY in bad shape. So, Sally, I would like you to keep a tally if you would.  Could you get a pen and a piece of paper? 

SALLY:  Alright.

MICHAEL: And just keep a tally of near-death experiences for Cindy. 'Cause the number is gonna get pretty high.  Being carried down Mont Blanc because you have lupus and you've been in the sun on the white snow.  Let's count that as #1.

SALLY:  Yeah, but that's nothing – that's NOTHING compared to an overlapped toe.  (laughter) Do you know how much that hurts?  In your shoe? (laughter)

MICHAEL: So, when we were in college, Cindy was always pushing herself – because  then it was known that she had lupus and she was on big doses of steroids. And anytime anyone heard an ambulance near campus, it was like, "Oh, what did Cindy do this time?"  She was designing the set for The Pinafore, I believe.  Gilbert and Sullivan. And you passed out on the set, right?

CINDY: I totally forgot.

MICHAEL:  Yeah.  You were the very model of a modern…

CINDY: Oh, stop it.

MICHAEL: …major lupus patient.  So you didn't graduate with us because you were too sick to take all your classes, right?

CINDY:  Eventually, I… they put me on "work and pay," which is where I could take as many classes as I could handle so I could start dialysis. I was now in end-stage renal failure.  Back in those days, they really waited till you were in end-phase.

MICHAEL: So when we were graduating from college, you were going on dialysis?

CINDY: I was already on dialysis.

MICHAEL: And you were on dialysis for a year then?

CINDY: Yeah.

MICHAEL:  Okay.  So Sally, do you understand what dialysis is? Do you know?

SALLY:  Well, kinda.  But I don't know what they're putting in you. 

MICHAEL: Let me see if I can sum it up and Cindy will correct me.  First of all, 

It's a wonderful thing because it keeps people alive until they can get a transplant. 

CINDY: Or until they die.  Because back in those days, transplants…. Dialysis units were limited, never mind transplants.

 

MICHAEL: You would not be here today without dialysis?

CINDY: Of course not. 

MICHAEL:  Okay.  For some people, later on when it became more normal, dialysis was doable. For Cindy, it was often very difficult.  So what happens Sally is, you don't pee. Your kidneys don't work.  So you don't pee.

CINDY: Well, that first year I peed.  Not a lot, but I peed some.

MICHAEL: Yeah.  But I mean, you're not peeing out your toxins.  That's why you go on dialysis.

CINDY:  That's true.  Yes.

SALLY:  So where do the toxins go?

CINDY:  They stay in you.  So that's why you get sick.  Because you're not excreting them.  So they're in your bloodstream.  So you have to get them out of your blood, and they do it through this machine, which uses osmosis and pulls the toxins out of your blood.  But you go every other day, which means that the toxins build up and then you get completely cleaned out. And they also squeeze the extra fluid out because, you know, you haven't gotten rid of all the fluid.  You haven't peed.

SALLY:  And how long does each time last?

CINDY:  It would be four hours.  But you have to get on the machine, which takes a while and then you have to get off the machine. I often felt kind of woozy after I got off.  So that would take a little while before I got home.   

MICHAEL:  And just so it's totally clear, they take all the blood out of your body, run it through filters and put the blood back in your body.

CINDY:  It goes out of your body and your same blood goes through this machine and it comes back in your body.  And it goes round and round and round and round.

MICHAEL: Yeah.

CINDY: You're not getting extra blood.  Same old blood.  Just getting cleaned.

MICHAEL:  I would say you were in pretty bad shape when you got your first transplant.

CINDY: Yes.

MICHAEL: Yes. And kidney transplants were new back then.

SALLY: Okay, so how old were you then?
 CINDY:  I think I was either 21 or 22.  

MICHAEL:  I think Sally can add this to her Near-Death Experience thing.  That's number two, Sally. 

SALLY: Okay.

CINDY: The thing with transplants then is that the most successful – and that is always true – the most successful transplants are living-related donors.  Meaning, you're related to your donor and it's someone who's alive.  And none of my family matched.  Not my parents.  Not my siblings. Nobody matched me.  So. I had to get a cadaver donor.  Back in those days – '79/'80 is when I went on dialysis – the odds of success were… I think it was under 50%. So I was going into a high risk transplant, meaning that there was no guarantee of success.  You go through the surgery and it doesn't necessarily mean you're going to keep it.

MICHAEL:  Now, of course, I love to block out of my mind anything that seems serious like this. So I definitely didn't take it seriously enough.  And I came up to visit Cindy.

CINDY: Oh, you came after the transplant.

MICHAEL: Yes, I came after the transplant.  So she then got toxic shock.  Remember what that was Sally?

SALLY:  Well, I remember it had to do with, what was it… tampons?  And you got it that way?

CINDY: Yeah. Because… Well, there were a variety of reasons but the main reason is that I took drugs to suppress my immune system so that I wouldn't reject the kidney. And because my immune system was suppressed which it was as well when I had mono – I mean, my immune system has been suppressed since I was 15 years old.  In fact, my birthday this year will be 50 years on prednisone. 

SALLY:  Oh wow.

CINDY:  And the amount of prednisone has gotten less and less and less as medical science has improved.

SALLY:  I've heard that prednisone is kind of a difficult drug because it has a lot of side effects.

CINDY:  Sure does.

MICHAEL:  But we didn't know about them.  The doctors never said that it affected mood.  We learned about that decades later. But anyway, you can count the toxic shock… that was another near-death.

CINDY: Oh, that was horrific.  

MICHAEL:  Yeah.  Add that to your list. So…

CINDY: We went… there's a whole long ER story, which I'm not gonna go into.

MICHAEL:  The point is, the woman was 22 and she'd had three near-death experiences already and believe me, there are many more to come.  So don't lose your pen for marking more of them.  I, again, went back to my life.  I didn't give her much comfort, which should have been a sign to stay away from me. But somehow she…

CINDY: No.  You actually were lovely.  You were very sweet.

SALLY:  Well, were you getting into your first job, Michael?

MICHAEL:  Yes. Anyway, sometime after that, Cindy ended up moving to San Francisco because your parents were there.

CINDY: Yes.

MICHAEL: And for me, this meant more plane rides and more adventures. I visited Cindy several times. She was living on Sacramento Street. Even the street names were cool. Divisidero. We loved saying "Divisidero. I'll meet you on Divisdero." And, it was all so new, and we had more adventures. We had extremely ambitious plans when I would visit.  I have the evidence, some of it right here.  More from the boxes.  It's like an artwork and it's a map at the same time.  It has silver glitter on it.  Kind of a strange map of San Francisco.  It shows all the things we did. There's a picture of a punk club that we thought was so avant-garde because they were projecting music videos on the walls. That was new in '82. We went wine tasting at Rutherford Vineyards. I don't know how I was able to drive after that.  Not a good idea. Went to a cabaret show that I never would have remembered.  It's called FemProv. 

CINDY: Oh yeah.  There's no way I would have remembered that either.

MICHAEL: We ate Double Rainbow ice cream, which we thought was a big deal at the time.  It's all on this map.  We drove down the crookedest street in the world.  We were busy!  I'm gonna put a picture of it on our website, throwitoutpodcast.com. This was also the time when Cindy got very interested in music and got me up-to-speed too.  So I also have here another artifact, Cindy. 

It's one of the mix tapes you made me. She taped off her favorite station KUSF. And it's all this TINY scrawled writing, and it has The Violent Femmes, The Cure, the Ramones.  Those are some of the artifacts that came out of my boxes.  And then, on one San Franciso visit, it's when her parents were away and they left us in their place with a bottle of wine, and they had a hot tub whirlpool in their bathroom…

SALLY:  Oh oh.

MICHAEL:  Let's just say, that was a turning point.  So we had lots of great memories.  But, I'm afraid this is also the beginning of what I'm gonna call The Time of Turmoil.  Um, Cindy had some problems.  And I became one of them. (laughter)

CINDY: One of the biggest.

SALLY:  I would assume the biggest one.

CINDY:  Yes.  Definitely one of the biggest.

MICHAEL:  Yes.  For a decade or so, I was a very confused person.  And I don't want to dwell on this.  It was long ago.  That's where it should stay. But in this particular tale, it's very important to eradicate the myth of Michael Small as hero.  Because there definitely were a lot of flaws in my behavior through all of this. Part of the problem was that when I graduated from college, I had experienced true intimacy with only one person. And his name was…  Michael Small. And t his was not a good thing. It puts an adult at a disadvantage. When it came to reading Proust in French – which I tried to do even back then. Or earning a living. Or keeping to a budget. Or feeding myself. Or cleaning up. Setting up an apartment. Visiting my parents. Chatting over dinner at the Limelight nightclub with Kevin Bacon and Kyra Sedgwick. (Side n ote: To anyone listening. You are now two degrees from Kevin Bacon.) With all those things, I was extremely adult.

But when it came to human intimacy, I'd say I was about 15-years-old. And Sally – you remember me at that age. Would any adult want that in their life?

SALLY: Absolutely not!

MICHAEL: Even worse than that , I was a 15-year-old with the dogged determination of a reporter who was gonna systematically explore his every conflicted and confusing feelings. And sometimes, to be honest, this did lead to great excitement, good experiences, fun. Moments when other people were very generous and very  kind to me. But usually it also led to pain for anyone whose orbit got intimate with mine. And, I would say, even more pain for so many of my friends who had to hear about my endless self-obsession. Right, Sally?

SALLY: Right, Mike!

CINDY:  Uh huh.

MICHAEL: Looking back, I think part of the problem was that I saw myself as such a nerd, I didn't think I could hurt anyone. But I want to give a warning to all nerds. You can do more harm than you realize. And I, seriously, want to apologize from the deepest part  of my heart for the pain or annoyance that my Time of Turmoil caused for anyone. And I really…. I can't say that strongly enough.  And this includes a big apology to Cindy Ruskin, who was a major recipient of the pain that I could create.  I would say, the worst of it was in 1988, during all of my confusion and turmoil, I decided to take a sabbatical from work so I could go to San Francisco and try living with Cindy.  This was the beginning of the end for your first transplant. You were going downhill and your were on lots of steroids.

CINDY I was always on a lot of steroids back then.

MICHAEL:  And the steroids did have an effect of making someone super-productive. Like, I think you were working on the book about the Names Project and the AIDS Quilt.

SALLY: Oh yeah.

CINDY: I think I'd finished the book by then. I was working on the movie.  I was living in the Castro.  It was during the time of AIDS. Everybody was really sick.  All my friends were sick.  It was a very scary time.  They were immune-suppressed because they had HIV.  It was a very upsetting, difficult, devastating time. It was, you know, the first pandemic I've ever experienced.

MICHAEL: But I don't want to leave out on a positive note that the book you wrote about the Quilt – which was a memorial to people who had died of AIDS – the book was nominated for a Pulitzer Prize.

SALLY:  That's so amazing.

MICHAEL: And this was a book written by somebody who really had struggles of her own. I also remember that the enhanced energy from steroids sometimes  affected what we ate. Once you asked me what I wanted for dinner. And I said eggs. Do you remember what you served?

CINDY:  Yeah.  But that's got nothing to do with steroids. 

MICHAEL:  Well?

CINDY: I did this little nest, little quail eggs in like a nest made out of tacos, or…

MICHAEL:  So all I said was that I wanted eggs for dinner and I got a nest with spotted quail eggs.

CINDY: But that had nothing to do with steroids. That was me living my way I live.

SALLY: Oh, I love it.

MICHAEL:  What about the dried pasta incident?

CINDY: No, no, no, no.  We're not even going there.

MICHAEL:  Okay, we won't go to the dried pasta incident.  Let's just say  there was an incident involving dried pasta.

CINDY: I got… I was a little moody.

SALLY: My dad broke a tooth on my pasta.

MICHAEL: Something almost got broken this time. But it didn't have to do with eating the pasta.  Um, what were you gonna say, Cindy?

CINDY: Nothing.

MICHAEL: Okay. But we still had a lot of fun exploring and laughing. We were livin' large.  We had no money.  But we were livin' large. But it didn't end that well. I was there six months, and then I was asked to leave San Francisco.

CINDY: No, I asked you to leave my apartment.

MICHAEL: Okay, and when I got home, a box with everything I ever gave Cindy arrived in the mail. And the contents…  some of the contents are still in Nancy's garage.

CINDY (laughing): It's my fault.

MICHAEL: No, well…

CINDY: I needed to move on with my life.  And I didn't need his stuff.  You know, he left.  But he left all this stuff in my apartment.  I had a one-bedroom apartment.  I was back on dialysis.  I just did not need this.

SALLY:  Mike…   did you leave it, Mike, so you could come back?

MICHAEL:  Who knows what I was up to…

CINDY:  So I had a therapist who basically said you need to get him out.  Return the stuff and move on.

MICHAEL:  So very appropriate for an overgrown 15-year-old, I went home and immediately developed such a severe case of mono, I had to go home to my parents for several months.  And I would say that while I was messing up your life, it was a terrible time for Cindy. Her mom had cancer.  And she lost her mom.  And she also lost her kidney.  At the same time. And I… and I left.  That's how I was not helpful.  When you lost your kidney, it was from…

CINDY:  CMV.  I picked up one of the opportunistic diseases that people with AIDS get.  But I was luckier than a person with AIDS back in those days because I could stop my immuno-suppressive drugs in order to get enough immunity to be able to fight the CMV. And then maybe, you know, get it back up again so I could hold onto the kidney. But in fact I lost the kidney.

MICHAEL: You know how careful we are now with Covid.  Nobody said to Cindy, "You should not be around sick people."

CINDY:  Well, I don't think they even knew that I was writing a book and a movie about AIDs.  And that I was, you know, visiting… I had friends that I was visiting in the hospital.  I stopped doing it and that was devastating.  Because one of my closest friends died of CMV and I stayed away from him near the end of his life because I was petrified of…  you know.  It was very very devastating.

MICHAEL: Yes.  And so Cindy was back on dialysis three days a week. We told you that that was not a good situation.  I think you also had your transplanted kidney removed.

CINDY:  Yes, that's when I stopped peeing altogether.

MICHAEL: Because it became infected, or they thought it was…

CINDY:  No, there was some thought that maybe the transplanted kidney was somehow a problem.  So I had a surgery to remove it.

MICHAEL: So, back in New York, I developed yet another unfortunate habit. And that is… with anyone who risked getting intimate relationship with me, I would talk about Cindy. And everyone had to hear about Cindy and her projects. I even tried to convince other people to try to do  projects the way Cindy did. This was not always popular. I believe at one point, I heard these words: "You and your stupid projects!  If you want to do projects so much, why don't you go back to San Francisco and live with Cindy!"

SALLY: Now who said that?

MICHAEL:  I… we'll just go on… We'll just keep moving on here.

SALLY:  Did I say it?

MICHAEL:  No, but at this time – it was the spring of 1991 -- my first play was being produced at a gallery that was part of the CBGB nightclub in New York City. The main character was based on Cindy. Originally, the character was on dialysis. But I had a director who was very wise.  He said, "You don't have the skill to write about this." So I cut out the dialysis part.

CINDY:  But… I know my favorite part about the show was that the character was on dialysis and she was fun and adorable and funky and all these things – creative.  And then she had a transplant and she became a BITCH!  (laughs)

MICHAEL: Anyway, when the show was running, I was going for much-needed counseling. One day, I was very upset.  I said to the therapist -- Cindy's dialysis wasn't going well. And I started crying. And I said, "Cindy's dying and I don't know what to do."  And I remember, he paused. And he looked at me and he said, "I  think you know what to do." He was a good therapist.

SALLY:  And you did, right?

MICHAEL:  Within a month, I packed up everything and moved back to San Francisco.

SALLY:  Aw, great.

MICHAEL:  Now you might think you've heard a lot about Cindy's medical challenges. But you have not heard anything. This is where things are gonna pick up a little. When I arrived in San Francisco in 1991, you been on dialysis for more than two years….

SALLY:  When you were on dialysis, could you read books?

CINDY:  I had complete brain fog.  I couldn't… I couldn't see beyond what I had to do at that very second, which was survive.  My body was just… It wasn't about pain.  It was about discomfort.  I kept saying, "I feel like I have dis-ease." I was uncomfortable in my body.  I wanted to jump out of my skin.  I was thrashing.  It just didn't end.  Every day.  Every night.  Forever.  It just didn't stop.  I couldn't sit on a plane.  I had to walk up and down the aisles.  In movie theaters, I was so restless, I had to walk up and down the aisles. 

MICHAEL:  I remember one person sitting behind us complained.  And I yelled at her and I said, "She is a dialysis patient!"

CINDY: That's 'cause I was wiggling.

MICHAEL:  Yeah.  I don't think she got it.

CINDY:  I can't even tell you how sick I was.  When your whole body is just full of toxins…

MICHAEL: And calcium deposits under her skin....

CINDY: Yeah.
 MICHAEL: …that made her itch.  So she'd scratch until her skin bled.

SALLY:  Oh, that's so horrible.

MICHAEL:  Yeah. She was covered in scabs.

CINDY: You just felt like, "Oh my God. You just hated…. I hated my body so much, it was a source of so much craziness.  Your legs would cramp if they took out so much fluid.  So I'd start kicking the wall.  Then I couldn't sleep.  And that went on for years.  I was just so tired.  And they put me on halcyon which was this drug that later was used by the defense in a murder.

MICHAEL:  That was the one time when I was near death. (laughter)

CINDY:  I really was only half-functioning the whole time.  You know, it was hell. And the longer it went on, the more hell it was.

MICHAEL: During that time, your fistula stopped working. 

SALLY:  What's a fistula do?

CINDY:  It's the port.  Basically, you put this needle into your arm in order to get the blood out and another needle to put it back in again.  But the blood flow is too strong for a vein.  So they join a vein and an artery together so that you have a stronger vessel closer to the surface – so you can put the needle in there.  I went through multiple fistulas surgeries.  Ultimately, had to have a second one, because they got clotted.  Things went wrong with them often. I think the main thing about dialysis that people don't understand is that you never get a break. There's no such thing as a vacation.  It's always there.  It's either today or it's tomorrow.  Doesn't matter if you are so sick.  You still have to go.  I was in a car accident. I still had to go.  It doesn't.

SALLY:  But what happens if you miss a day?

CINDY:  Well, you can get away with a day.  But basically, you're gonna get toxic.

MICHAEL:  You're gonna die.

CINDY: Now in my case since I had zero kidney function, I didn't have much time if I would miss a day.

MICHAEL: If you had to estimate, how many times did you have your fistula operated on?

CINDY:  I don't know.  Maybe five? Or six..

MICHAEL:  This is not…

CINDY:  I had a second one. Yeah.

MICHAEL:  Sally, this is not easy.  This is a big deal to have a fistula put in and operated on.

CINDY: And then, if it's not working, you still have to go to dialysis.  So they have to dialyze you through the groin.  They actually go into an artery in your groin and that is NOT fun.

SALLY:  I have to ask.  Are you put out with anesthesia?  Or is it a local anasthesia?  What is it?

CINDY:  You have a local block because it's on the lower half of your arm.  The first time I had one, I was in college I guess. You know, they have to cut an artery. I couldn't see the doctor at all while they were operating.  And the nurse would come and check in on me and I was facing away from the surgery.  So I didn't actually see them.  Then, when they left, they said goodbye to me, and they were COVERED in blood.  ' Cause my artery must have squirted all over them.  I was just like "Oh my God!" 'Cause I felt fine.  It was outpatient surgery.  And I came wheeled out and people were all sitting in line waiting for their outpatient surgery, and they were like, "Oh my God!  She's alive!" When they saw these two butchers walking out…

MICHAEL:  Well, okay, going on from that, there was also the fact that Cindy was on a very strict diet because the toxins don't come out of your system.  We were eating a lot of blueberries and iceberg lettuce.

CINDY:  Well, that's because they were the lowest in potassium.  I mean, really, no fruit and vegetables are good for you. But I was craving fruit and vegetables.  I really wanted tomatoes more than anything.  And avocados.  But they were all high in potassium.  And that was my biggest issue.  Potassium can… If your potassium is too high, or too low, it can stop your heart.  Because it affects your muscles.  If it's too low, you just eat a banana or something.  If it's too high, you have to get it out of your body.  And dialysis is how you get it out of your body.

MICHAEL:  Now do you want to talk about the tomato incident?  When I came home and you were eating a tomato?

CINDY:  No, I don't remember it.

MICHAEL:  Oh yeah.

CINDY:  But I'm sure I was crying.

MICHAEL:  I came home one day. She was eating a tomato and crying because she wanted the tomato so much, she just didn't care anymore.  She was just going to eat that tomato.  And she was sobbing while she ate the tomato.  That was the closest she ever came to self-destructive behavior.  There were pretty rough times. We were both emotional. One day, we were driving to Stinson Beach, which is north of San Francisco. We were on this  winding, VERY skinny road above a steep cliff. You've seen it.  It's very dramatic.  It's in movies and commercials. We're on the way --  Cindy and I have a huge argument about a movie. Cindy got so upset that she opened the door while I was driving and acted like she was going to jump out – over that huge cliff.

CINDY: I was going to step out.

SALLY: Oh my God.

MICHAEL: … crashing  to the ocean below.

SALLY:  Oh Cindy!

MICHAEL:  I was so shaken up. I found a place to pull over. And  I screamed at her. And I said, "What you said about that movie is so ABSOLUTELY WRONG! Did you even see it?" Then there was a bit of silence. How did you respond?

CINDY: …. "No."

MICHAEL:  She hadn't even seen the movie.  And then, I had to admit that I hadn't seen the movie either!

SALLY:  We've got two charlatans here.

MICHAEL:  We almost lost Cindy's life over a movie neither of us had seen!

CINDY:  You thought…. I knew I wasn't going out that door.

MICHAEL:  This is also when Cindy got an assignment to write a history of Sesame Street. A book.  And she'd done the reporting in New York. But she was still too sick to pull it together.

CINDY: I was still on dialysis.

MICHAEL: Yeah.

CINDY:  I was on dialysis for five years.  So this went on and on and on.  And I got sicker and sicker.  Each year got worse.

MICHAEL:  It was rough times.  And I had to try to pull the book together.  I dropped my work and I worked full-time on that Sesame Street book.  When we submitted it, it wasn't what they wanted and the book was canceled.  One painful detail that I hardly can believe is that we had a copy of the book and when we were escaping from New York for the pandemic, you had me take it downstairs.  I shredded it.  A big mistake.  It hurts me to this very moment.

CINDY: Oh, I’m so happy.  That was so great.

MICHAEL: I could have had that in my boxes.

CINDY: Oh, thank God.  That is actually me trying desperately to be normal. And feeling like I could do things.  And I really couldn't do anything. I could make art.  Art was my lifesaver.  But I really couldn't write.  I couldn't see the arc of the book. I had nothing in me.  To own up to that at some point, and to beg Michael to take over for me, was absolutely horrible.

MICHAEL:  Talk about all the horrible things, in 1992, a car plowed into Cindy while she was driving.  She got a huge gash in her leg that wouldn't heal. It had to be stuffed with gauze every day and then the gauze had to be pulled out.  I said to the doctor, "Where's the nurse to do this?" And he was like, "No. You're doing it." 

CINDY:  I would put the gauze in an then he would have to rip it out.  And I would scream when he ripped it out.

MICHAEL:  I tried doing it once and I started to dry heave. So the dialysis nurses did it. 

SALLY:  What was it, like a separating wound?  Why was it so disgusting?

CINDY:  It was DEEP.  All the way to the bone.

MICHAEL:  To the bone.  Yeah. You could see the bone.  So that was another bit of bad luck, for someone on dialysis to have a car accident, to have that happen.  And then, Cindy would feel so terrible, she'd go out to hail a cab to go to dialysis. And she couldn’t stand anymore. So she'd sit down on the curb. Because it was San Francisco, people would… they thought she was just another crazy person. They'd steal her cab.

SALLY:  You should have put a cup out there and see how much you got.

CINDY:  It was like… I didn't know what to do.  And no one helped me.  I had to sit on the curb and try to get a cab.  Because I couldn't…. I needed someone to pick me up, to put me in the cab and, you know… no cab driver's gonna pull over for a person sitting on the…

SALLY: I can't believe all these things that happened to you.

MICHAEL:  Oh yeah.  We've got a lot more.  I was messed up in some ways back then.  I know.  But I was not going to sit by and let this happen to Cindy. I was determined to approach her illness like a very challenging reporting assignment. I just had to dig deeper to work things out. So I would write everything on my reporter's pad, and I would insist on joining Cindy at meetings with her doctor, and I'd go in with my 17 questions written out . Cindy, did your doctor enjoy this?

CINDY:  He would…. I told Michael, "Hide your questions!" Because my dialysis doctor at the time would look over your shoulder, and he would jump to, like, number 19.  And he would ignore the others.

MICHAEL:  For me, who was trying to get everything resolved, there was always unfinished business when we left that office. It was really challenging.

SALLY: And Michael is the most tenacious person you could ever meet.

MICHAEL:  Well, it didn't work for us then. But now we're gonna get to the 

worst and scariest situation. We're gonna get to some more "near-death." Which is that she had a rare condition that no one understood. Out of the blue, her potassium levels would go sky high.  And when your potassium goes sky-high, it stops your muscles. And your heart is a muscle.  Okay?

SALLY:  Oh God.

CINDY:  The first time it ever happened was before I understood any of this.  And I was with a friend on a bus, and I'm like, "Whooo. My legs are like Gumby."  I thought it was so funny.  I had these spaghetti legs that just sort of collapsed underneath me.  But ultimately, right after dialysis, it happened.  And that doesn't make any sense.  Because you've just had dialysis.  So you should be clean. But within half an hour, my lips would start feeling numb.  I started to know what the symptoms were.  I would say, "Oh my potassium's up." But, of course, you can't go into an ER and ever tell anyone that you know what's going on with your blood levels.  Because they don't believe you. Ultimately, the dialysis team knew that I knew.

MICHAEL: So there was one New Year's Eve that we went to the ER three times.  Three times, right?  Three times on New Year's Eve. 

CINDY: I had dialysis.  By the time I got home, I felt the symptoms.  They said come back.  My potassium was high.  They re-dialyzed me on a zero potassium bath.  Got home and I could feel it again.  Got there.  Retested my blood.  Potassium was high.  Had to do dialysis again.  I mean, it was crazy. And no one knew why. 

SALLY:  What year are we talking about now?

MICHAEL:  This was about '92, '93. At this time, I decided we should go to couples therapy because I felt my needs weren't being met.

CINDY: You were already in therapy.

MICHAEL:  Yes, I know but it seemed like everything was about Cindy's health.  And it was a challenge.  I couldn't really speak up because everything was an emergency every day. We had no time for anything except Cindy's health.  So we get to the therapy and I go through my whole story... "I handle everything – the food, the cleaning, the money. I have my needs. My needs need to be met." And Cindy's listening and she's not saying a word, which was not that usual.  She was so quiet and so I thought, "Well, then I should keep going." So I said more things.  I went on and on. Cindy still is quiet.  She's just saying nothing. Finally, I used up everything I could possibly complain about.  Then I turned to Cindy and we said, "Cindy, do you have anything to say?" And Cindy said…

CINDY:  I think my potassium is going… My potassium is high.  I wanted to tell him all along.  But he wouldn't breathe to give me a break to be able to….  I didn't want to interrupt him in the middle of the whole thing.  But I'm starting to slide off the chair.

MICHAEL: Yeah.  Because her muscles…

CINDY: I'm slumping on it. I was like "Hurry up, Michael." God, you know,  I don't want to be the one to interrupt.  And I was so upset that my health was going to intrude again on his moment. 

SALLY:  A movie scene if there every was one.

MICHAEL: So her muscles… her muscles are stopping.  So our wonderful therapist Virginia and I carry Cindy to the car. 'Cause Cindy cannot move. Then, like in the movies again, I'm racing to the hospital, and I'm not a great driver.  Going through red lights. Honking my horn.  We get there, we're screeching in.  We jump out. I think I took the keys to the car, but I…

CINDY:  You jump out.

MICHAEL:  I left the door open. I run and grab a wheelchair. I'm trying to get her into the wheelchair on my own.  'Cause she's bigger than I am.  And I get her in.  I'm running, pushing her with the wheelchair through the hospital. Running, running, running.  Screaming for help, help, help, help.  Come on. And when we get to the dialysis unit, it's like those doctor shows. They push me away.  They pull the the curtain around Cindy. I could hear them pounding her chest with that heart thing.  And they're talking to each other and I'm, like, just standing out there, outside the curtains. Like, what do I do?

SALLY:  Pay no attention to that man behind the curtain.

MICHAEL: Yeah.  That's what happened.  Well, you can add that to the "near-death" for that one.

SALLY: Okay.

MICHAEL: I think the moral is: If you live with a really sick person, please don't complain.  Anyway, Cindy survived on dialysis for FIVE YEARS. Five years! And eventually we got a call from the hospital where Cindy was on the waiting list for a kidney. I think it was…

CINDY: December '93.

MICHAEL: Right.

CINDY:  I had an aroma therapy business and I was busy making bottles for people – 'cause I had a lot of Christmas orders.  I hand-made the labels.  I had a lot of work to do.  Then they called and said, "We MIGHT have a kidney for you."  Then the entire day goes by.  It's like 8 o'clock or 9 o'clock at night.  I called the unit and there's no reply.  Everyone's gone home.  And I'm like, "They had a kidney for me.  What's going on? So I guess I didn't have one." But then Michael's like, "Come to bed. Come to bed."

MICHAEL: No but also, we need to say, this is not the first time we got a call.

CINDY: Oh yeah.  That's true.

MICHAEL: And nothing ever happened before. 

CINDY:  The big thing is, I had a beeper so they could beep me.  And people would dial the wrong number and it would beep.  So that beeper gave me many heart attacks because I thought I was getting a kidney and then it was a false alarm. But this was a phone call from someone who said, "We've got a kidney for you."

MICHAEL:  Yeah. So I said, "Just go to bed.  Forget it. 

CINDY:  I was like, "No, I'm getting it, I’m getting it, I'm getting it."  I packed a little bag and he was like, just looked at me like I was an idiot.  And eventually I got into bed.  I'd hardly put my head on the pillow and the phone rang and I went, "Ah ha!"

MICHAEL: And then we get to the hospital at whatever, at one in the morning or something.

SALLY:  Wasn't it Christmas Eve?

CINDY: It might have been December 24th.

SALLY: Because I think you called me on Christmas Eve and told me that Cindy had a new kidney.

MICHAEL:  Yeah.  It was somewhere around that time.

CINDY: Yeah.

MICHAEL: So we get there and Cindy's fistula had died again.

CINDY: They dialyze you before the transplant.  And dialysis stopped because my fistula collapsed before we had finished the dialysis session.  So if I needed it again after the transplant, I had no fistula.

MICHAEL:  Not a great situation.  But Cindy got a new kidney.  I feel like the fistula failing…. You already had two fistulas.  You were in a very dangerous situation.

CINDY:  Yeah.  We'd have to reconstruct something.  If my kidney had not started immediately, I would have had to do the dialysis through the groin again. I was scheduled for fistula surgery. And I ultimately had a transplant instead.  Yay!

SALLY:  So is this number five for a near-death? Or not? 

MICHAEL:  I would say yes.  But Cindy seems to say no.

CINDY: Nah.

MICHAEL: Okay.  We're not near-death.  But Cindy comes out of surgery with a new kidney, and there's an instant surprise. Which is that that restricted diet is gone. Cindy can have whatever she wants. Instantly.

CINDY: I mean, it was amazing. The first transplant, afterward I was still on a dialysis diet for a while.  This time, in the operating room, they said, "What do you want to drink?" And I said, "I can only have limited amounts of water for the last five years.  And that's it."  I never drank anything else.  I had to limit my fluids. So I said, "I don't know. Like, what can I have?"  They said, "Anything!" And I said, "Anything? Like, orange juice?" And they said, "Yes. You can have orange juice." Orange juice is packed with potassium.  I was like, "NO!!?!?" And they said, "Welcome to transplantation of the '90s, Cindy.  And it was amazing!  Didn't you start crying?

MICHAEL: Yes.  She'd been waiting five years for that glass of orange juice.  Five years.  And, as you reminded, she couldn't even drink a lot of water. She had to chew ice in order to get fluids. Always chewing ice. When I saw her drinking that orange juice, I started crying and shaking all over.  And – the thing is – it changed my life too because I haven't stopped crying since then.  I turned into the town crier that day.  Like I cry at commercials.  I definitely cry at Undercover Boss.

CINDY: I used to be the crier. And now he's taken over. I feel so stoic now.

MICHAEL: Anyway, Cindy had a new kidney, her second transplant. She could eat whatever she wanted.  But we did learn that Cindy was allergic to cyclosporin, right?

CINDY: Yeah.

MICHAEL: It's Cindy Ruskin.  So it couldn't be simple.

CINDY: We didn't know it was an allergy.  So what happened is that I couldn't walk.  I had to be in a wheelchair. I couldn't walk at all.  My joints were in agony.  It's so interesting.  Every time I have a reaction to something that's not positive, it's always joints.

SALLY:  Was that from the cyclosporin?

CINDY: This was from the cyclosporin.  But it took us a year to say that, and even then, the company that made cyclosporin said that it was anecdotal. But when I stopped cyclosporin, a year later I was able to walk again.

MICHAEL: This means that all her joints were in incredible pain and she was in a wheelchair.  This transplant that was supposed to make perfect – life was far from perfect.

CINDY:  It was way better, though.  Way better.

MICHAEL: It was better.  But she really was in a difficult situation.  Now, around this time, I did some good things.  I took care of Cindy.  I held our lives together.  But again, I was not Mr. Perfect. And my shenanigans continued.  I was obsessing about who I was and what I wanted. So we went back to our brilliant and very patient therapist Virginia.  She's the one who carried Cindy to the car.  And this time Cindy was in pain and she was in a wheelchair and she wasn't in the mood really to talk.  And I wanted to talk. So I talked.  And then Virginia paused, and she said something. And here's what she said: "In light of everything that Cindy is going through, your behavior is unacceptable. If you don't decide what you want, Cindy is going to cut off from you and you will lose her forever. This is it. Either commit right now. Or let her move on. "

SALLY: Whoa.

MICHAEL: And I was like... I can't even tell you.  I was like… Wha...  What is she saying?  It's impossible to tell you how un-ready I was to hear that. I didn't have a clue.  I didn't…. I didn't expect anything like that. I couldn't believe it. This is gonna sound like an exaggeration. But at that moment, the entire room started spinning. I literally saw it spin. Like in a cartoon.

CINDY: And then Michael said, "I thought she was on MY side."  (laughter)

MICHAEL: That's what I said later.  At that moment, I mean, everything was blurry. Like, I heard a rush in my ears.  And then, the wildest thing happened.

SALLY: What?

MICHAEL: I had... clarity!  I knew.

SALLY: Wow.

MICHAEL: I knew. I swear to you, I knew.  I totally knew. No doubt. No doubt at all. None.  Gone.

SALLY:  That Cindy was worth everything. Every affliction.  And you were going to stick with her.

CINDY: No.  This is pushing it in the wrong way. Because basically Michael had major issues of his own that had nothing to do with my health.  These issues weren't about taking care of me.  I mean, that was a small part of what was going on.

MICHAEL: I would say that I was sort of leading two lives.  There was the helpful me.  And there was the other me, who was behaving in a very immature and out-of-control way. It definitely was not fair to Cindy.

SALLY:  You said you found clarity.

MICHAEL:  I found clarity at that moment.  And when we went home, Cindy was not with me yet. She was still angry with me, and for good reason.  And it's hard to be helping someone in and out of a wheelchair when they're really angry with you. But I didn't care. Because there were none left. I knew what was gonna happen. Several months later… our friends had given us their house to live in when they went overseas and we were in the garden behind their house and Cindy, I think I had a sort of half-hearted proposal of marriage.

CINDY: He says that he didn't want me to have a proposal story.  But I am sorry, Sally, there IS a proposal story.  First it was, I don't think I'm ready to get married.  I'd heard this, like, 5000 times.  I didn't care anymore.  You know, the relationship was actually going well at this point.  I didn't care about being married or not married.  So it's like, here he goes again. But he said, "I think I might be in the spring."  And it was fall already!  I was like, "What?"  And that's the last I heard of it, until I heard him on the phone to you, inviting you to our wedding.  I called my sister and said, "Karen, I think I'm getting married.  Michael just is on the phone right now inviting Sally to our wedding.

MICHAEL: When she heard the proposal, or whatever, she might have remembered that her mom… 

CINDY:  Oh, well… my mom… when my mom was… this is sad. (crying) I'm sorry.  I don't know if I can… When my mom was dying, she told me that I should marry Michael. And I said, "No way. He's completely fucked up.  I'm not interested."  She said, "That's just the person he is.  He has to try everything before he decides what he wants. And he wants you….

SALLY: Very wise. That's so wise.

CINDY:  She said, "He wants you. I can see how much he loves you in his eyes, and the way he cares about you. He really is the right person. And I said, "No he's not. I'm sorry." And she died not knowing that ultimately we got married.

SALLY:  Oh, she knows.

MICHAEL: So it was April, 1996.  We were 38.  And we were married in Marin County, north of San Francisco, behind the house of Cindy's sister and brother-in-law, right next to the redwoods. And it was very happy.  It was a pot-luck dinner and Cindy's friend from dialysis made a big part of our dinner.

CINDY: Yeah. She made the jambalaya.  Which is totally off her diet, 'cause she was still on dialysis.

MICHAEL: And a few weeks later, we bought a very tiny tiny house in the Bernal Heights neighborhood. It was the last minute when a normal person could still afford anything in San Francisco. The day after that, I got a job in New York City. How do ya like my timing? We never got to live in our house. We moved to the East Village in Manhattan. And this is where the roses would grow up around the condo in New York City and the fairy tale would end. But, little did this happy couple know... the worst pain and the biggest challenges were ahead of us. 

So I think we'd better save it for another episode.

SALLY:  Good idea.  Just hearing what Cindy has been through, I think I need a rest.

MICHAEL: So everybody say their goodbyes!

CINDY:  Bye!

SALLY: Bye!

MICHAEL: And we'll pick up tomorrow with the final installment of our tale about blood, guts, and something like a miracle.

SALLY: And some shredding of what you pulled out of those boxes?

CINDY:  Yes!  That would be a real miracle.

MICHAEL: We'll see about that.  And so will everyone who comes back for our next episode of...  Sally?

SALLY: I Couldn't Throw It Out.

THEME SONG: I Couldn't Throw It Out
  Performed by Don Rauf, Boots Kamp, and Jen Ayers
  Music by Boots Kamp and Don Rauf
  Lyrics by Don Rauf and Michael Small
 
  Out here in Nancy's – her big garage
This isn't a mi- This isn't a mirage
Decades of stories, memories stacked
There is a redolence of some irrelevant facts.
But I couldn't throw it out
I have to scream and shout
  It all seems so unjust
But still I know I must
  Before I turn to dust
I've got to throw it out
Before I turn to dust
I've got to throw it out

Well, I couldn't throw it out
I couldn't throw it out
I'll sort through my possessions
In these painful sessions
I guess this is what it's about
The poems, cards and papers
The moldy musty vapors
I just gotta sort it out.

Well I couldn't throw it out
  I couldn't throw it out
I couldn't throw it out
I couldn't throw it out

END OF EPISODE 9

Cindy Ruskin Profile Photo

Cindy Ruskin

Artist

Cindy Ruskin is a self-taught oil painter and mixed media artist. Originally from South Africa, she received her BA in Fine Arts (Art History) from Harvard. Cindy lived in New York for more than 20 years where she devoted herself to community art projects including the creation of a large mosaic for the Lower Eastside Girls Club; she also ran the art program at Avenues for Justice, an alternative-to-prison organization for juvenile offenders. In the past year Cindy’s paintings were selected for eight magazines including All SHE Makes, Clover and Bee, Goddess Art, Photo Trouvee, and The Purposeful Mayonnaise. She exhibited her work at the PxP online Gallery, and this year her work was selected for in the online group shows “Lavish” at the TMP Gallery, “Shades of Blue” Awards Show at the Camelback Gallery, and “Home” with the Arts to Hearts Project. To see Cindy's art, go to: cindyruskin.com