I was in my closet the day I heard those three letters: ALS. Eric called me from the doctor’s office in San Francisco; he’d flown down to see a neurologist there. His symptoms started maybe a year prior. When we would have a meal with the kids, he’d say things like, “Something’s wrong with my hand.” He was struggling to use his chopsticks, dropping his food. That was when he started seeing doctors. He was initially diagnosed with a few other things, but he had this sinking feeling that it was something more serious. And I was like, “No, it’s not. I promise you it’s not. I can feel this! It’s gonna be okay.”
When he told me that day, he just started weeping, as did I. It didn’t feel real because he was still okay. I was here at home with my youngest daughter — my home, that I share with just the girls, since Eric and I separated in September 2017 — and I’d gone into my closet to take the call, trying to be private. She was saying, “Mommy, what’s wrong? What’s wrong?” I tried telling her, “Honey, nothing. Everything’s fine,” because I couldn’t process it. I didn’t know all the details like I do now, but I knew enough about ALS to know that there wasn’t a cure.
About a week after the initial shock, we decided to tell the kids. We wanted to have complete transparency and honesty with them. They’re older now — Billie is 15 and Georgia is 14 — and I’m a horrible liar. You can see right through me. So I asked a therapist, “What is the best way to do this?” We’ve had a family therapist who we’ve been working with since we separated, but I sought out professional help targeted toward teenage girls because it’s such a formative time in their lives — they’re trying to individuate while they’re having to deal with this really huge loss and anticipatory grief. And she said, “The kids will let you know; they’ll stop asking questions when they can’t handle it anymore, when it’s too much information.” So we wanted to give them the opportunity to speak with his doctor, because they had a lot of questions that at that point I couldn’t answer, and I don’t even know if Eric could answer them. They’ve talked to her, and they know that she’s available at all times.
The problem with this diagnosis is that there really isn’t a road map. Someone can tell you, “Okay, this is what you have, and you’re having some weakness in your right arm,” but what’s to come? They can’t really lay that out for you very well; instead, they’re like, “We’ll see you in three months.” No matter how prepared you are, or how much I prepare the girls, or how much Eric prepares himself, he’ll wake up one morning and there’s something else that is an obstacle, or he’s lost the ability to do one more thing — it just comes out of nowhere. It’s a terrible, terrible disease. I think it took probably six months to wrap our heads around it and to realize what it actually meant and the changes that were starting to come pretty rapidly.
Strangers started noticing that something was going on with him when he’d be out and about. In March, for spring break, we decided to split up and have some alone time with the girls, each one of us. I did a mommy-daughter trip to Paris with Billie, and he took Georgia and her best friend on a trip as well. On that trip, he tripped and fell a few times; he was starting to lose his balance. One day, they were out on a boat to go snorkeling and decided to go swimming in the ocean. As he’d later tell Diane Sawyer, he “realized I couldn’t swim or generate enough power to get myself back to the boat.” Our daughter had to help get him back on the boat.
My phone kept ringing in the middle of the night because of the time-zone difference, and when I picked up, he had just gotten back on the boat. It was a pretty sad conversation: I was gutted hearing how upset he was. I was also scared; I wanted to make sure Georgia was okay — I was worried about all of them, to be honest with you. He was just so emotional — Eric played water polo, water’s his thing — and I knew that it landed, it hit home. It was a big realization for him: This is actually happening.
In April, he decided to share his diagnosis with the world. He was losing his balance, he was dropping things, and we just didn’t want people making up false stories out of any behavior they might see or speculating like, What’s going on with him?
When Eric went public, so many people reached out to him, and to me, to express their support. His friends, family, co-workers really showed up. It was so loving and kind and generous that people wanted to share their resources and their contacts and their experiences. But I’m not gonna lie, it was a little overwhelming. All the while, we were trying to figure out, Okay, should we try stem cells? Should we try exosomes? Should we try this treatment or that? But there’s a handful of women who reached out to me who are either currently walking down a similar path as I am or have been through it that I never would’ve connected with, and I am so grateful. Because I do not know how to ask for help. Even just calling up someone to say, “Oh my God, I’m having the worst day today” — that has been a big learning curve for me. I left home a few months before I turned 16. I grew up in Hazard, Kentucky, a coal-mining town in the Appalachian region, and there just wasn’t a lot to do there, and I knew at a very young age that I wanted to be an actress. I moved to New York, where I started modeling and later acting. So I’ve always been self-sufficient. I’ve always taken care of myself. I was taught that that’s what you do: Be strong and resilient and you get through, and you don’t need people and you handle things.
Eric and I have known each other for a million years now; we met in 2003. I care about him deeply. We had a really lovely marriage for a long time — we were married for 15 years — we created two beautiful girls. But also, lots of shit went crazy in our relationship, and it wasn’t good. We separated, but we never got a divorce; we were about to and then we didn’t. We haven’t lived in the same home for eight years; he’s dated other people, I’ve dated someone. It’s a very complicated relationship, one that’s confusing for people. Our love may not be romantic, but it’s a familial love. Eric knows that I am always going to want the best for him. That I’m going to do my best to do right by him. And I know he would do the same for me. So whatever I can do or however I can show up to make this journey better for him or easier for him, I want to do that. And I want to model that for my girls: That’s what you do. That’s the right thing to do.
This year, the girls and I have spent a lot of time at Eric’s house, which is about a 12-minute drive away from our home. We have a lot of meals together. We do a lot of drop-by visits — well, I don’t just drop by. I always call and say, “I’m coming up the hill” or “I’m dropping Georgia off.” We wanna take advantage of the time that he has right now. He made it very clear that he wants to spend time with his family as much as possible, and I am committed to facilitating that. That was an easy conversation to have. Some of the harder conversations — about down the line, two or three years from now, what does that look like? — we haven’t really started to have, or we sort of touched on them, but they are just too sad. I’ve heard from people in the ALS community, this new community I have, who have reminded me that time moves really differently for kids. They sense the time as passing either much slower or much quicker. One of my friends was a similar age as my daughters when her father had ALS, and she said that it seemed to happen overnight. It was like one morning she woke up, and suddenly her dad couldn’t walk or communicate.
Eric has 24/7 nurses now. Just figuring out the health-care system is its own thing — the health-insurance company will deny you what you’re asking for and you have to appeal and then you have to apply again. With the nurses, the woman from his insurance said to me, “You can keep applying, and I’ll keep denying,” I was like, Oh? F that. I made it my mission. I was “locked in,” as the kids would say. I crashed out, and then I locked it in. And we got it approved after two appeals. The week is divided into 21 shifts. There are times that shifts aren’t covered, so I cover them. There was a 12-hour shift recently that I could not cover. I could only do four hours because of all the stuff that the kids are doing. So I had to call on two of Eric’s friends, one of them who had never really taken care of him in that way. I thought, I can’t believe I had to ask someone to do this. And of course when I asked for help, they said, “Yeah, anything, what do you need? What’s going on?” And they both showed up and did a wonderful job.
The flip side is that there are a lot of people who used to be more present in my life who I think about and wonder, Where’d they go? I’ve thought about it a lot, and I’ve talked to my therapist about it a lot. Most people are not great in this situation because it’s so heavy. It’s not easy for people. So I don’t hold any grudges toward who hasn’t shown up. It’s funny, like, Oh my God, that person who I never would’ve imagined has really been helpful — and this person who I thought would be by my side every day hasn’t called me in six months.
Lots of people online have also reached out to the girls, or try to, through social media. I look at those constantly and tell them, “Listen, just because someone writes a really nice note to you that is very thoughtful and nice, it doesn’t mean you have to respond and start up a conversation with this person because adults really should not be talking to kids online.”
The hardest part about it being public is just knowing, when we go out to dinner or something, that there are eyeballs on you. I haven’t experienced paparazzi for so long. I get it: When you decide to become an actor, that’s what you sign up for. Still, it’s one thing if you’re going to a premiere and another if you’re running out on a Sunday night to have dinner in your sweatpants. We went to have sushi one night, and it was the first time I had to unload the wheelchair and open it and get Eric into it on my own. And oh my God, I was sweating bullets and there were people watching and taking pictures and I was so upset because I was really struggling. I had a flashback from when I was a new mom and I didn’t know how to open the car seat — panicking and the baby’s crying and I’m trying to do this. It was that kind of a feeling, just awful. But I’ve now mastered that thing. And we are really much more careful about where we go out and when we go.
Eric’s diagnosis has changed my approach to everything. Even with strangers, sometimes I’ll be standing on line to get my coffee and I’ll just look at them and go, I wonder what they’re going through. Because I know everyone is going through something.
Lately, I try to stay in the moment, even though there’s no escaping thinking about the future. I worry so much about my girls losing their father — they’re going through this while experiencing all the pressures that are put on young girls, and I want to do everything in my power to give them the tools they’ll need. They will be different because of this. I know that. One thing I’ve realized, and this is something I’m working on, is that I spend so much time navigating everyone else’s emotions around this, I haven’t really sat down and investigated how I feel about things. I’ve just been going, going, going, one foot in front of the other.
I am anticipating that it’s not gonna be a great experience for me when I slow down enough to do that, which I’ve started to do with my therapist, but to fully digest this and process this is gonna be beyond heartbreaking. I am trying very much to help my kids, Eric, myself, all of us to get through this knowing that death is a part of the life cycle. And in this case, we are very unlucky in many, many ways. But we’re also blessed in that we know that time is the most valuable thing, and we can use it wisely.
And there’s still a little glimmer of hope. Like, I keep thinking, Well, with AI medical research moving quickly, there’s a very small chance, but there is a chance, that maybe they could find a medication that could halt ALS. I still have that in me. But sometimes I say to myself, Why am I letting myself have that hope when it doesn’t feel realistic? It all feels like I’m walking on one of those bridges that are made out of ropes, and it’s just going on forever and I’m never gonna get to the other side.
Spending all this time together, it’s all been really positive, and I think it’s nice for the kids to see maybe a softer side of us. It’s not that they have the hopes of us being together — kids always dream of their parents getting back together, and I think now ours don’t because they understand the reality of the situation. And hopefully, what they see instead are two adults who are trying to be mature and focus on what’s important.
At the same time, I also need to possibly have my own life. My own happiness, goals, romance. I know I’m gonna be judged for saying that, but I think it’s important for my girls to see that yes, we can do this and we can do that. Until you do it, you don’t know what it is, and if someone wants to judge me, I don’t care anymore. My mom and dad are in Kentucky, they’re older and not in the best health, so there’s my parents and my kids and there’s Eric, and I’m spread thin. I’m trying to figure out how to manage it all better. And I think I will get to a place where I’m managing it all better. But listen, I’m 54; I have been through a lot of my life. I know I can do hard things and survive them. I try not to ever read comments but, you know, you’ll see one and think, Oh, gosh. Why is it that people hate me or think that about me? That’s so not true. They don’t even know what they’re talking about. And I’m like, Am I defending myself to some person out in the ether that I don’t even know?
I’ve started going back to work. I loved working so much, so I always knew that when my girls were a little older, I’d want to go back. So I was sort of already on that path, and then we got Eric’s diagnosis and I knew I needed to go back to work because he at some point will no longer be able to work. I’ve already done a couple of indie movies that haven’t come out yet, and I have two projects I am working on right now. It’s wild because it’s so different now. Actors now do 99.9 percent of auditions on tape at home. I lived for auditioning and the callback and the producer session and a screen test. I actually thrived in a room. What do you mean I’m gonna just go downstairs and have someone videotape me? I can’t imagine that casting directors and directors are actually watching all these tapes. But I’m gonna get onboard. I just need to make my dog stop barking in the background.
Self-care is a hot topic here. I’m constantly talking about it with the girls, because I don’t want them to feel guilty for still just going out and being kids. I don’t want us sitting around thinking, This horrible thing is happening, so I’m not allowed to ever be happy or feel joy, or waiting for the other shoe to drop. I want us, them and myself, to try to focus more on the present and make today meaningful.
I say this a lot: This is not the dress rehearsal. Whatever you’re doing today, that is your life. Eric getting the ALS diagnosis has brought that to the forefront of my mind. So live for today. Wear the shoes, wear the nice bag, don’t keep it in the dust bag. Put the nice sheets on your bed, like, what are we waiting for?
Because it’s the things you take for granted that we just don’t think about. The other night, I was taking the girls to dinner and I said, “We’re taking the stairs.” And they were like, “Why?” I said, “Because we can.”
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