Andrea Miller on Life, Legacy, Loss, and Love
The first time I walked into the Miller household was seven or eight years ago. Andrea Miller would soon become my mom’s best friend; a woman who’s walked alongside us through some hard times, always with a voice of reason and love. She has become a second mom, a cool aunt, and a woman that I admire beyond belief.
Andrea is a mother of two and a wife to Tom Miller, who suffers from Amyotrophic Lateral Sclerosis, a progressive neurodegenerative disease better known as A.L.S. Among many things, Andrea is a wildly intelligent, compassionate, caring soul. She helped her husband create a nonprofit called #WinningWithALS to support children who have a parent with A.L.S. She was one of many that came together to plan and put on Cripple Creek Music Fest this past October. Oh, and she’s teaching one of her daughters how to sew.
Tell us about yourself.
I had a really awesome childhood. I played golf in high school. I was the only girl on the boys team – started in eighth grade; played varsity golf – but it was awesome. It made me work, you know? I had to play from the guys’ tees. I had to work a little bit harder to compete with them, but then when I went to go compete with the girls, it was easy.
My dad died when I was 15, and that kind of changed everything. I think that plays a big role in what is happening now in my life and with my kids, with [Tom’s] A.L.S., and being like, “Okay, I need to figure out how to protect them and how to get them through this journey.”
Anyway, so I went off to college and met Tom, and that’s when I kind of felt secure again after my dad had passed. I met Tom and I’m like, “Yeah. That’s what I’m missing.” He was funny and he liked good music and I loved his shoes. He went to law school, and that’s when I started in the pharmaceutical industry.
My family owned the company. I got a really incredible opportunity to learn many aspects of the pharmaceutical industry. I was a psychology and philosophy major, so I thought I would do that, but this job presented itself. It was with my family. It was an opportunity to learn. Tom was getting ready to go to law school, so I needed to be the support.
It was great. I loved all the different things that I learned. It was sales. It was marketing. It was the operations. So I really enjoyed that. Then Tom passed the bar, and the day we found out I said, “Okay, now can we have a baby?” [Laughs.] So, we had a baby and I stayed at home for a little bit. I realized I just really enjoy the world of work. After I had Grayson, I went back to work in the pharmaceutical industry again.
We built this house and moved into it. We’ve been here for 14 years, and it’s the only place Camryn’s ever lived. It was one of Tom’s great ideas. He said, “I found this great house and I want to move there.” It was like 900 square feet.
My mom walked in the front door and was like, “Oh, I like the foyer.”
I said, “No, this is the living room and the dining room. That’s not just the foyer; that’s everything. This is the house.” We basically blew off the back and built the house. In the meantime, we lived with my grandmother. … Then we moved in here and had sweet Camryn a couple years later. Tom’s practice was thriving and I was selling pharmaceuticals and life was just moving along. I was doing all the volunteer work. I always feel like you have to give back however you can, whether it’s running the swim team or volunteering in the classroom. Now I have to get help from others, and it’s hard, ’cause I’m always giving help. I don’t like to ask for help.
Walk us through the timeline of when Tom was first diagnosed.
So, spring break of 2015, we were at his parents’, and he started having these really bad cramps. I said, “You have got to go to the doctor about that.” Now, men don't like to go to the doctor, especially when they think something’s wrong. [Laughs.]
He ended up in the hospital because he had a Crohn's attack, and during all of that, we were starting to see neurologists. We were going to doctors, and they were trying to rule everything out, and there was nothing. It wasn't copper levels. It wasn't electrolytes. We go to a neurologist while he’s at St. Elizabeth. She says, “You know, I want you to go have this test…” Basically they take needles and they stick them into your muscles and watch the reaction. So we had that done, and then the doctor wants us to come back in a couple of days because it looks a little troubling. We were like, “No, no, no.” We knew we were looking for something that was not A.L.S.
The only true freedom we really have is the freedom to choose the attitude we take toward the things that we do.
So they sit us down and tells us it’s A.L.S. and, “You have two to five years to live.”
Tom says, "Well, I don't understand how that can happen cause I've never played baseball." [Laughs.]
And the doctor looked at him like, "Oh my gosh. This guy just joked about the fact that I told him he was going to die in two to five years." So we then had to pretend that life was normal and we had to go work a swim meet.
Had you told your daughters by this point?
No, because it was Grayson's freshman year of high school and she was getting ready for exams. I was like, “We can't do that. We can't tell her.” I told my mom and she's like, "Oh my god, we've got the curse."
I say, “Mom, no, this is not the curse. This might be the blessing.”
How have the girls been with this whole process?
Completely different – from each other. Camryn doesn't want to talk about it, but she's the one that will go to therapy and speak to her therapist about it. She is more introverted and quiet – which kind of worries me a little bit. The great thing about Grayson and her vivacious, strong personality is I know exactly where she stands and what she's thinking. [Laughs.]
It's interesting, because when you go through a grieving process, rarely is it anticipatory grief. When you get a terminal illness like A.L.S. where you know there’s an end, you have anticipatory grief. You start going though those stages of grief before the actual end even happens. There’s the anger and the sadness and the denial, and maybe the depression, and then the acceptance. It's one of the things I need to learn a little bit more about. I feel like you might get to a little acceptance and all of a sudden you step back into the anger and then you step back into the sadness.
What can we do to make these kids’ lives as normal as possible in this place of uncertainty?
One of the things that I say when they start to be sad is like, “You know, today's not the day to be sad. We will know when that day will be. We can be sad that day, but right now there's months and there's years.” With A.L.S., your muscles are always firing and it basically wears them down. They're just always working and then they eventually die. Everybody moves through it differently, which is one of the difficult things. Tom's started in his hands; that typically moves slower. The last place it hits is your lungs, and once it starts to hit there, that's when you kind of know that things are moving in a direction of death. We've been blessed that his lungs have not changed in functionality at all. In the meantime, Grayson gets diagnosed with juvenile Idiopathic Polycystic Arthritis.
How did that diagnosis come into play?
We came home one day and both of her knees were swollen, and I'm like, “That's not an injury. That's something else.” She had always been an athlete: swam, rowed, five, six days a week. So we took her in and in a matter of three or four months, they say she’s got arthritis in her jaw and in her knees and in one ankle and then her fingers.
But I think it gave an appreciation for her dad: all the sudden not having the ability to do physically what you're used to doing. Instead of rowing five days a week, she can barely go up the steps. One of the thing about autoimmune diseases is you don't see what's going on. You look just like everybody else. So we spend a year dealing with Dad’s diagnosis, then one year later, she gets diagnosed. Now, she's in remission; she's on medicine. I give her an injection every two weeks.
Tell us a little bit about #WinningWithALS.
So it started as kind of a joke. We would go somewhere and we had the placard for the car. We could park wherever we wanted. So Tom would take a picture of the handicapped parking right up front and say #winning, and then it became #winningwithals. It was getting to meet bands; getting to be in the front row; getting special seating; having people part the waters when he goes to Octave to see a show. They're like, “Hey, let this guy up here because he's in a wheelchair.”
This legacy that Tom wants to leave… I think he said it best in that your legacy is not something that you build, but it’s the people after you that build and maintain your legacy. One of the blessings of having a diagnosis where you are kind of told you have limited time to live… It’s like this blessing and this curse. The blessing is: “I have an idea that I only have a certain amount of time.” [Tearing up.] The curse is: “Okay, I only have a certain amount of time.” I don’t think many people get to play a hand in creating their legacy, but he’s getting to do that.
So, we started thinking about, you know, “What do we want to do?” Tom decided he wanted to start a nonprofit, #WinningWithALS. Then we had to determine what our mission statement was, and that’s where we kind of pulled in, “What is it that we feel is missing?” There's a lot of research and there's a lot of support for the patient. But there's not a lot of support for caregivers – more specifically, the kids.
We want to say, “Yes, yes, yes, you can do that. Yes, you can have that.”
We decided we wanted to support children whose parents have had an A.L.S. diagnosis, to help provide the financial stability that is taken away from them. One of the biggest things for me is people would say, “What can I do for you?” and I’m like, “No, it needs to be, ‘What can we do for my kids?’” Making dinner for me, it really isn't for me. I give that time to Camryn; I’m teaching her how to sew. So what can we do to make these kids’ lives as normal as possible in this place of uncertainty? When you tell your kids that their parent is gonna die, it's scary. I'm blessed because I’ve got incredible friends, an incredible family, and school systems that are helping my kids. I've got a lot of support, but I don't know that it’s out there for everybody. The money that we raise through #WinningWithALS, we want to provide financial support for kids to continue to do travel soccer teams, to participate in art club or take art classes, to go to prom, or go on vacation, or go to camp.
Can you tell me about the festival you guys did?
We had this music festival in October called Cripple Creek Music Fest. We were gonna do a golf outing and my husband said, “Well, I don't like golf and I don't play golf, and I love music. Let's have a music festival.”
People were there for the music and then they learned that they were there for a bigger reason.
His friends said, “Okay, if that's what you want, then that's what we'll do.” It was one of the most incredible days of my life, even though the winds were 50 m.p.h. We had six bands, two stages. We had food trucks and beer and a bourbon bar. It was a beautiful day and the sun was out. Everybody smiling everywhere we went. People were there for the music and then they learned that they were there for a bigger reason. At 8 o’clock, we had our friend Rachel Roberts present a grant to a family who has four kids. They got to come up on stage and Rachel announced their names and they received a check, because they're going to Disney in the spring. This gave them all their own extra spending money. That was the first big gift that we got to give. That's what we wanna do. We want to say, “Yes, yes, yes, you can do that. Yes, you can have that. Yes, you need tuition for school because you wanna stay at the same school and it's a private school and tuition is expensive and you don't have the income.”
We've only been doing it since March of . It was kinda one of those things where everybody said, “Hey, we wanna do this. Let's do it. Okay.” We just started going. We raised just shy of $100,000, and now we are gonna start putting the infrastructure in place to build what we need to build and give as much as we can give.
With your dad passing when you were younger, has that helped you in this situation to kind of prepare your daughters?
Absolutely. I think the number one thing that it’s done is that I can promise them that they will have a happy and successful and enjoyable life even though their dad might die before they’re 20. They can see that I have. It can happen. That’s a matter of the choice you make. In life, you have choices. I can use my dad’s passing as an excuse to be a jerk and to make poor choices and bad decisions, or use it as a reason to make good choices, good decisions.
Sometimes I think that maybe Tom Miller needed a wife that understood what his kids were gonna need when their dad died. You never know why things happen. Later on, you figure it out or you might get an inkling, but you don’t know it in the moment. My kids needed me because they needed an example that you can still be happy and still have a great successful life with lots of friends and lots of great moments and your dad not be alive for it all. You’ll still survive and be happy. That’s kind of what I hope to give them: the safety and security, the role-modeling, the assurance that it’ll be okay.
That’s a lot to handle while caregiving, working, and trying to just be a human.
I've got a full-time job and I'm working. Then I have my kids and I have Tom to care for. My company has an incredible corporate culture and they have come alongside me and been amazing. They've set me up to work from home. Mainly what that gave him was stronger mental health: not being alone during the day and feeling safe and feeling as though he has what he needs. It's secure. That’s what you wanna give someone that's looking at the last few years of their life. You wanna give them safety and security and love and as much joy as you can. And it's not every day. There's a lot of scary days and there's a lot of hard days and there's a lot of frustration.
You might get to a little acceptance and all of a sudden you step back into the anger and then you step back into the sadness.
Again, in life, there's a bigger plan. I didn't think that I wanted to be in the pharmaceutical industry, but I've loved it for 20 years. It's really helped me to become a better caregiver. I understand the medicines. I understand how to research them. I understand how to manage insurance and deductibles and copays. I know what all of the language means. I think one of the things that's really hard is that when you're a patient, you need an advocate for you. So I'm Tom's advocate. I'm the one that can push back a little bit. I'm the one that can question a course of treatment. I’m the one that, in my opinion, is the advocate for both my daughter and my husband as we go through this.
Do you have one piece of advice for those in similar situations?
Not to live clouded by expectations. Don't expect the worst. Don't expect that it's going to be the way that you see it on the YouTube videos or the internet when you're searching for answers to questions you don't even know that you should be asking. I think that's one of the things that has been good for me is that, had I lived under the expectation that my husband was gonna die in two years, I would've been led by fear. I think there's two ways that you can approach anything in life: It's either through fear or through love.
I've got a lot of support, but I don't know that it’s out there for everybody.
There was a book that I read in college: Man’s Search for Meaning. The one thing that I took away is that the only true freedom we really have is the freedom to choose the attitude we take toward the things that we do. It's not easy to do that, and fear is real and it will creep up inside of you. But it can be overcome with love. Get out from underneath the expectation and look to approach the journey with love, ’cause there are a lot of good things that can happen in the midst of what looks horrible.
Tell us about an influential woman in your life.
Oh… I have a lot of them. [Pauses]. That's a really good question. I guess I'd have to say my mom. I think because, you know, she kind of built the foundation in me of optimism, of looking for opportunities. Turning things into positive and looking for the positive in all that we do… She laid the foundation of my faith, which has played a really big role in coping and working through a terminal illness when your spouse is told that they're gonna die. Just as much as my kids can see that as a teenager you can have your parent pass away and you can still have a great, happy life, I can see that when your spouse dies at a young age, you can still have a happy and fulfilled life.
She’s amazing. She's here all the time. She will rub Tom’s head and rub his feet and take care of him and just love on him. She's a doer and a giver. I don't ask for her to do much. She just goes and does.
[Author’s Note: Following the interview, Andrea reached out to me. She felt she left out two very important women for this question.]
Gray and Camryn. Gray told me the other day, as we pulled up to her dorm, that she had been thinking about me and that I was badass. If I am ever close to badass, it is completely and only because they drive me to do what I do. They challenge me to question my beliefs in order to make sure I’m teaching them lessons they can learn from – not just my perspective or opinion. To push through my fears, even if it is the front seat on the roller coaster with my hands in the air. To believe that I am capable. To work harder. Whenever I have failed, it is because I stopped trying to grow and push myself, stopped looking for opportunities to learn, or I took my eyes off what was most important in my life. Gray and Cam make me want to grow and explore and keep my mind open to opportunities. So without a doubt, the most influential women in my life are two beautiful and courageous young women. Their journey is much tougher than mine, and they show me how to thrive through their vulnerability with grace.