This week, we present two stories about the mother-child relationship, from a daughter and a mother.
Part 1: Actor and writer Erica Silberman tries to find a place for her mother with Alzheimer’s.
Erica Silberman showed promise in science for one brief semester in high school when she got an A+ in chemistry. Since then, she has become a playwright, director, producer, and in home color consultant. She’s published in The Best Monologues from the Last Frontier Theatre Conference, Playscripts, Teachers & Writers, and the Sunday Salon. She has been a mentor and a workshop leader, and served on various boards at Girls Write Now, a presidential award winning after school mentoring program for high school girls from underserved city schools. In the spring of 2018 her play, In the Night Everyone is Equal, will be produced by The Dramatic Question Theatre at Art NY.
Part 2: When Pat Furlong’s sons are diagnosed with a severe type of muscular dystophy, she’s determined to find answers.
Pat Furlong is the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Their mission is to end Duchenne. They accelerate research, raise their voices in Washington, demand optimal care for all young men, and educate the global community. Duchenne is the most common fatal, genetic childhood disorder. It affects 1:4,600 boys worldwide and has no cure. When doctors diagnosed her two sons, Christopher and Patrick, with Duchenne in 1984, Pat immersed herself in research, working to understand the pathology of the disorder, the extent of research investment and the mechanisms for optimal care. In 1994, Pat, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure. Today, Pat is considered one of the foremost authorities on Duchenne in the world.
Part 1: Erica Silberman
A bunch of years ago, my fiancé, Peter, and I, who were actors at the time, we were working in restaurants. We had just gotten this amazing, beautiful, sunny, huge apartment in Brooklyn. And two months after we moved in, I moved my divorced psychotherapist mother, who had just been diagnosed with Alzheimer’s, in with us. She couldn’t live alone anymore so my sisters and I thought it was best she live with me because I was managing her care and because basically my sisters had a lot of crap going on in their life and I got… I was the one.
My fiancé, Peter, thought, “Yeah, this is a great idea. We have the space. This is wonderful.” He was super supportive and he was great with the move. So I plucked my mother out of Connecticut and I dropped her into our Carroll Gardens, Italian-American, forget-about-it neighborhood. The deal was that Peter was not responsible for her. He didn’t have to cook for her or clean up after her or walk her, bathe her, help her with her dressing or anything like that.
My mother was really, really sweet and really, really loving, and she didn’t have the usual Alzheimer’s changes like being, all of a sudden, really angry, having a complete personality change and being really agitated and aggressive and searching for things in the drawers and rattling things around. She just would ask the same questions all day long, like, “When am I going home?” And, “What day is it?” And, “What day is it?” And, “What day is it?”
Then she would ask, “Erica,” very seriously, “do you have any chocolate?” I didn’t.
So then she would say, “Does Peter?”
But this went on like all day long, all day long and all night. She didn’t wander. She wasn’t a big… like we weren’t scared that she was going to run away, which is what everybody is scared about when somebody has Alzheimer’s. She did have this one weird thing where she was obsessed with our bedroom. She didn’t open any other door and this apartment had lots of closets. It was very unusual.
She just was obsessed with our bedroom door and she would, in the middle of the night, open the door and then stand there expressionless and silent. It was really creepy and Peter was really creeped out about it, so I'd have to get up and walk her back to her room. This would happen like several times a night and Peter was just like, “Whoa. I can’t deal with that.”
So we put a little latch on the door but then it was like having Jacob Marley and his chains, Scrooge’s dead partner, trying to tell you something. So I would go back with her and I'd lay in bed with her and I would answer her questions over and over until she went to sleep. And then she’d come back and it went on all night long.
Then I would go back to my bed and I would imagine what it would be like to be her and everything is so confusing and crazy and then I would drive myself crazy and then I just quit acting, because the real world was a little more important right then. So I can imagine being in an imaginary world. I was in the imaginary world. I was imagining what it was to be her.
So one night I stayed late at the restaurant and I had a drink. Then I had another drink, then I had another drink. Because, if your mother has Alzheimer’s, you're going to want to drink. You just are.
So I got back late and Peter was furious. He started yelling at me and my mother was, “This is about me, isn’t it? You’re fighting because of me, aren’t you?”
And I told Peter if he wanted to yell at me he would have to yell at me outside because it was upsetting my mother.
So we went out onto the street and we went in front of the community garden. Peter was yelling at me there by the whatever flowers were blooming and I was crying. Then all of a sudden the cops showed up. They separated us and the male cop took Peter over to the fence of the garden and I got escorted into the female cop’s car.
She asked me what was going on and I explained it all to her. She looked at me and I felt like the most irresponsible parent ever, like just such trash. And she said, “Hah, that’s hard. Maybe you should call a support hotline.”
I said, “Yeah.”
And she said, “Maybe, you know, you shouldn’t drink. Drinking makes things worse.”
I was like, “Yeah.” Yeah, I was going to drink.
So after the cops left, I decided that I should take Peter seriously when he said to get my mom and her Alzheimer’s out of the house so he could get some work done and have some peace. But the problem was finding a place for my mother because she wasn’t a New York resident and we didn’t know where she was going to be. She wasn’t really ready for an Alzheimer’s place because that also cost a lot of money because they considered her a flight risk so everything had to be on lockdown. And she just wasn’t going to play this Alzheimer’s game like Simon Says and sing Alzheimer songs like Row, Row, Row Your Boat. And the people who were there doing that stuff, who really were deep into Alzheimer’s, they were just going scare the bejesus out of her.
So I was racking my brain for where to go and I was stomping my way to the bank one day and like no sleep, crazy self pity, of course. All of a sudden I see this glass door. Spelt out in these ninety-nine-cent-store gold, metallic letters it says The Eileen Dugan Senior Citizen’s Center. And below that was this flyer. On the front it had this caption that said, “Happy Father’s Day. Definition: Father’s Day, just like Mother’s Day, but you don’t spend so much.”
So I open the door and the door opened. It wasn’t locked. I peeked in and I grabbed a flyer and I raced home.
I forgot to mention that my mom, one of the things about Alzheimer’s is that you eat a lot. She was on this hobbit diet where it was like several meals a day. I had already made second breakfast for her, but when I got home I had to make elevenses and lunch.
Then I waited until she was thoroughly engrossed in picking lint off the floor, because that was one of the activities she could do, and I made a call to make an appointment. This guy named Matt answered the phone. I sort of explained the situation, sort of left out the fact that she had Alzheimer’s.
Matt said, “Oh, that’s okay. Yeah, okay. Yeah. It doesn’t matter if she's a New York resident or Connecticut or if she has a little dementia,” because that’s sort of what I said. “It’s fine. She's totally welcome here.”
So I was really happy, but then I spent the next twenty-four hours trying to figure out what am I going to say to my mother because if I tell her where we’re going, she's not going to go.
We’re at the office. We get there and there are all these women in the office and they're all laughing and talking and then Matt shows up and he greets us. Matt is super, super friendly and my mother is super, super suspicious of anyone who is super, super friendly.
He greets her and he's telling her all about the programs and the arts and crafts and my mother is just looking at him blankly. And he says, “Hey, we’ll find something here for you to do. Do you like Bocce ball? We have a Bocce ball court here.”
My mother turns and looks at me and she's like, “What the hell is this guy talking about?”
I look at her and I’m like, “I don't know. Why don’t we take the tour?”
So we go on the tour and along the way Matt’s greeting everybody by name. Everybody is laughing and cracking up and gossiping and playing cards and doing arts and crafts and reading papers to each other and laughing, and we get to the Bocce ball court. No one’s playing Bocce ball but there are four guys at this folding table and they're playing poker.
Then there's this really agitated guy standing behind them and he's yelling and he's like, “What? Why can’t I play?”
The guys are like, “‘Coz you cheat, that’s why.”
And he says, “I don't cheat. I got money. You want my money? Fuck! Take my money.” And he reaches into his pocket and he pulls out this crumpled dollar bill and he throws it on the table.
The guys are like, “Whatever.”
He looks at them and he says, “My money is no good, huh? Is that it? My money is no good?”
“You cheat!” the guy says.
And so the guy says, “I don't cheat. I win. You don’t like me playing with you because you don’t like losing. I'll show you how this game is played. You wanna know how this is played? I'll put a bullet in your back.”
So I’m holding my mom’s hand and I just sort of squeeze it and I’m thinking, “Wow, this place is colorful. This is like, wow.”
Then the man, the agitated man starts pulling his pants down. Matt races over to him and Matt starts yelling at him, and the agitated man yells back at him. They're yelling at each other until finally the agitated man, he calms down.
Matt rushes over to us and he's like, “I’m so sorry. I’m so sorry. Oh, my God, I’m so sorry. It’s okay. He doesn’t have a gun. He was just trying to show that he's not holding any cards.
He's not dangerous. It’s not dangerous here. It’s a very safe place. There's always one in every bunch, right, right?”
And I’m thinking, “Wow, this is fantastic. I've got Matt on the defensive. He's never gonna know that my mom has Alzheimer’s. And if he does, he won’t care.”
So he says, “Would you like to continue the tour?”
I’m like, “Absolutely.”
So he turns to my mother and he says, “Ann, your daughter tells me that you like to dance. Well, I've got a surprise for you.”
And my mother says, “I can’t wait.”
So I thought that the Bocce ball court was the crown jewel of the senior center but I was wrong. The real crown jewel, the real Hope Diamond of the Eileen Dugan Senior Citizen’s Center was hidden behind these closed double doors. When we get to them, Matt opens the doors and a tsunami of music pulls us in, and I gasp.
Then Matt shouts over the music, “Enjoy yourselves. Take your time. Come find me when you're done.” And he disappears like Glinda the Good Witch without the bubble or the fanfare.
I’m taking this all in, I’m in super slow motion. There's this little old man, little dapper old man playing the keyboard and he's singing Frank Sinatra tunes into the microphone. And people are dancing and the people who are seated are tapping their walkers and their canes. They're having such a good time.
It’s like that scene in The Godfather, that wedding scene when Al Pacino tells Diane Keaton, “That’s my family, Kay. It’s not me.” It’s like this scene has been playing out for years since they shot that picture and the whole cast has aged into senior citizens. We sit down and we watch it and I’m smiling this big Macy‘s-Thanksgiving-Day-parade smiles. I’m imagining my mother here laughing and dancing, dancing in a way that my dad never danced with her. I’m just thinking this is just so fantastic.
I’m in this state of awe, and I look over at my mother to see if she is in the same state of awe. She's in a state of awe, all right. She looks like somebody just gave her front row seats to a pole dancing contest at Show World. The first round, not the finals.
So I nudge her. I nudge her because I could always make fun of her and she would laugh and laugh and laugh and laugh until she spit and then kind of choked. So I nudged her and I do this kind of like shimmy, ha-ha-ha, and she kind of gets on board with me. Then this cute, suave man sort of cha-chas over to us and he says to me, “Would you like to dance, pretty lady?”
And I’m like, “Oh, I’m so charmed. My God, that’s so sweet. I’m okay, but maybe my mom would like to dance with you. Mom, would you like to dance with this charming man?”
And she, my mother who has this really great manners and she's so sweet and kind, she’d take care of your baby if you're stressed out on the subway. She’ll hold it for you a while to give you a break. My mom says, “No.”
And I look at her and I say, “Mom, you love to dance. Why don’t you dance with the man?”
“I wanna go home. It’s loud.”
I apologized to the little man. I tell him, “I’m so sorry. I guess my mom is not feeling well. Maybe another time?”
The man sort of shrugs and he cha-chas over to another old woman.
We get out on the street and my mom has her hands over her ears for dramatic purpose, to tell me that it was really loud in there and I should have known because my mom hates loud sounds.
And I realize I can’t do this. I can’t. There isn’t going to be a place for her. There isn’t going to be a group she's going to like because my mom never liked groups and she's not going to like them now.
So we go back and I call my sisters. I tell them, “I can’t do this. It’s not gonna work. I don’t have the money to stay home all day and take care of her, and I don’t have the money to pay for someone to take care of her.”
And Medicare doesn’t pay for companionship because they don’t consider Alzheimer’s to need companionship or supervision, which is really the one thing that people with Alzheimer’s actually really need.
So after a lot of negotiation, like a lot of negotiation, my oldest sister, who had a child at that time, a young child, she says that she’ll take my mom in and share her childcare with my mom. And my other sister and I will go up on weekends and other conditions.
So my mom is going to move and it’s going to be one of many moves. Then Peter and I break up. Then after my mom moves out, I join lots and lots of groups.
Part 2: Pat Furlong
I’m from Middletown, Ohio. It’s a place you've never heard of unless you've read the book Hillbilly Elegy.
My parents are from Germany. They told me I was from good stock. I married a physician and we had children, four of them. I worried about two of them, the two boys, but I pretty much dismissed that they were fine because my husband was a football player for Notre Dame and these little boys would grow up big and strong just like him.
On sunny days in summer I sat outside with a lot of women on a rock wall that separated driveways and we watched our children play. Patrick was two, Christopher was four, Michelle, or Mush, was six, and Jenny was eight. That continued for several years.
But in 1984 those ages increased by two years. They were four, six, eight and ten. When we were watching them on those rock walls they were doing things like somersaults in the grass. They were trying to ride their Big Wheels. And Chris, my six-year-old, was really struggling to pedal that Big Wheel. Uphill was impossible. Downhill was easier, but still not easy.
There was a moment I was standing there talking to my neighbors when I heard a bloodcurdling scream. Chris was in pain. I ran over and grabbed him. I checked him for cuts and bruises, but there were none. But what I saw was a calf muscle that was just expanding in size and redness. A single calf muscle.
I carried him into the house, put him on the bed, and watched him all night. Gave him a little Tylenol, rubbed that little sore leg. In the morning, when Tom was going to work, he came to the door and said, “Take Chris to see Steve Pledger,” our orthopedic friend.
I said, “What’s wrong?”
He said, “Nothing. I don't know. But I think he needs to be checked.”
So that morning, I grabbed Chris, got a babysitter in for everyone else, and we went up to Steve’s office. He walked into the waiting room and he took one look at Chris and he said, “Duchenne Muscular Dystrophy.”
I'd never heard the word. I’m a nurse, but I blanked out all pediatrics because children shouldn’t get sick and, after all, I’m from good stock and I married a physician and we couldn’t have any illness in the family. I just didn’t have any history of it so Plan A was healthy children.
I said, “So tell me. What does this mean, this word Duchenne Muscular Dystrophy?”
He said, “Well, his muscle is missing something. We’re not quite sure what it is,” it was 1984, “but we know his muscle won’t survive. So he's not going to walk for a long period of time, probably before he reaches his teenage years he’ll stop. By the time he's in his teens he won’t be able to raise his arm to his mouth and this is 100 percent fatal.”
“So what does Patrick look like?”
I said, “It’s the same body type, two years younger.”
And he said, “Then you have two with Duchenne Muscular Dystrophy.”
So I came home that day and by the time I pulled in the driveway the entire neighborhood knew Duchenne Muscular Dystrophy, and probably a lot more about it than I was able to grasp. That day, I went to the bank because I thought, “Well, I'll just cure it. I'll just fix it.”
So my husband was at his office, in tears, and I went to the bank because the bank was giving out a lot of money to doctors. I borrowed a hundred thousand dollars and signed my husband’s name. At dinner, Tom asked me what I did that day and I said, “Well, I borrowed a hundred thousand dollars.”
He said, “Let me get it right. We’re borrowing for my office, this house, practically for food, and you've added a hundred thousand?
I said, “Uh-huh, but I could cure this disease.”
He said, “You won’t. You can’t. Nothing can happen.”
I then ordered in all of the publications. Keep in mind, Al Gore had not given us the Internet, so I had to order publications and it took two weeks. When the publications came, I circled the PIs of those publications.
I called one of them in Chicago and I went there and this was a person looking at estrogen because the philosophy was women didn’t get the disease so it must be something related to estrogen. Isn’t it always?
So I spoke to him and he said, “You're a desperate parent. I can’t really talk to you because how could you ever understand science.”
So I had to rethink what I was doing. I developed a list of questions and the questions were, “How well is this disease characterized?” “Where are the gaps?” “Where is the money?” “Who’s giving the money?” And, “Is there a standard of care?”
I couldn’t go to any more physicians that were going to dismiss me because that wasn’t going to work so I became an imposter. I was a postdoc looking for a job, or I was a medical student thinking about doing an internship at various neurology clinics. I went around the world to understand my questions as an imposter.
I was in the University of Pennsylvania at a lab when the investigator, and before that no one even asked me the question, who said, “Who are you really?”
And I said, “I’m a postdoc looking for a job.”
This individual said to me, “Oh, so you know so-and-so from Minnesota?”
I said, “Oh, yeah, he was one of my teachers.”
And he said, “He doesn’t exist.”
So I said, “All right. I’m a parent. I want to get everyone together.”
I'd been visiting, by this time, thirty-five different PIs, and he said, “We’re not coming. We’re not coming to a desperate parent.”
So on his desk was Time magazine with French Anderson and Michael Blaese, who had done the first gene therapy experiment and I said, “They're coming.”
And he said, “How long are you going to lie about this?”
I said, “No, I promise they're coming. I promise. I promise they're coming if you all get together.”
And he said, “If we all get together and they come, we’ll come.”
So I left his office, I flew to California to find French Anderson and went to Washington for Michael Blaese. And I begged them not as an imposter but as a desperate mom.
They came to that first meeting and they walked up the aisle and said, “In eighteen months we’re gonna cure Duchenne Muscular Dystrophy.”
And I saw thirty-five scientists decompensate, jugular veins increase, screaming, yelling, “We can’t. There are no standards of care, there are no critical masses of people that are funded in institutions looking at specific areas, there's an area of gene and cell therapy that has to be investigated, and there's inflammation in this disease that is not being addressed.”
So I wrote down a business plan. Centers of excellence, standards of care and a plan.
Our first investment after I started PPMD, a small organization, was to create to centers of excellence, one at the University of Pittsburgh and one at UCLA. Pittsburgh for gene therapy, UCLA for inflammation.
Then I went to Washington to find out why the NIH didn’t seem to care about this rare disease. I learned that they cared about things that were in law. So I pounded the pavement in Washington, D.C., and I found some friends: the late Senator Wellstone, Susan Collins out of Maine, and others, Roger Wicker, and they asked me to write a law.
I didn’t ever know how to write laws and I didn’t remember Civics 101 so I wrote down standards of care, centers of excellence, and a plan that was translated into legislative language. And in 2001, in the House and Senate it was introduced as a law, as a potential law. And in December 2001, if George W. Bush did nothing good, he signed the MD CARE Act into law.
So from then until now we have a $700 million investment from NIH, Department of Defense and the Center for Disease Control in muscular dystrophy. We have standards of care, we have a disease well characterized, we’re knowing the gaps, we understand the questions, industry is here, forty-six companies are looking at gene and cell therapy, downstream we have twenty-four clinical trials. So we've made a difference and now we have a $6 billion investment in this disease and we feel like there's hope.
But my sons didn’t survive. They died seven months apart. On September 29, 1995, and April 29, 1996, at the same hour, they died. One died of pneumonia and one died of a broken heart.
But I believe from then until now that the universe enabled them to me so I could change one piece of this disease and drive it to therapies for every other boy so that no family would go to their friendly doctor and hear, “There's no hope and no help.”
They will rather hear that, “We know this disease well, we have standards of care, and that this child will not die in their teens, but today they have a lifespan of thirty years old. And with the gene therapy opportunities and twenty different kinds of trials and forty-six companies, there is a life that you will live and it will be a good one. You will be here for a long time and reach your dreams.”