Welcome to the Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers, and advocates.
Phil O’Neil:
Hello, I’m Phil O’Neil. Thank you for joining us on the MS Australia Raw Nerve podcast. Our guest today is the lead singer of a band that formed in Portland, Oregon in 1991. Their first three albums all went platinum. The single that we all know, Santa Monica, was the Billboard Rock Charts number-one single for three weeks. They’ve sold over 6 million records, nominated for a Grammy Award in 1998. They’re about to tour Australia. The band is Everclear. The lead singer is Art Alexakis. Thank you so much for joining us on the podcast, my friend.
Art Alexakis:
Thank you, Phil. Thanks for having me. This is special. Thank you for asking me to do this.
Phil O’Neil:
I want to show you a photo which I’ll also put on the MS Australia Facebook page.
Art Alexakis:
Is that 2020?
Phil O’Neil:
- That’s you and I having a chat before a radio interview that we did in 2017. What I find is interesting about that is, we’ve known each other off and on over 30 years, but I didn’t know at that stage I’d just had a really big secret, just as you had a really big secret. We’d both been diagnosed with MS just before that interview, and yet neither of us knew that about each other.
Art Alexakis:
That’s interesting. That’s really interesting. When were you diagnosed?
Phil O’Neil:
In 2016.
Art Alexakis:
Me too. I was diagnosed in April of 2016. I got into a car accident. No one got hurt, but a couple of weeks later, I had a pinched nerve in my neck and I called my orthopedic surgeon. He’s like, “I’ll set you up for an MRI. Go get an MRI. I’ll see where it’s at, and I’ll give you an epidural, and I’ll loosen it up. It’ll be fine.” I went and got the MRI. I show up in his examination room, and there’s like five guys in there with white coats and clipboards, and I’m like, “Oh.” Check this out. As I walk in, they’re all like, “Oh,” they all look at me like that, and stop talking. I’m like [inaudible 00:01:42].
Phil O’Neil:
Yeah. “Okay. This is actually probably more serious than I initially thought.”
Art Alexakis:
I walked out to my car. I called my wife, facetimed my wife. We both started crying. We were scared. I had no idea what the hell MS was. For all I knew, it was what Jerry Lewis had telethons for. I didn’t know. Time I got home, about an hour later, my wife had her computer out, my computer, my daughter’s computer. Looked like she was trying to hack into Fort Knox or something, and she’s like, “Baby, we got this.”
Since then, I would tell friends and family, and if people brought it up or I saw someone in a wheelchair, I’d go talk to them. If they had MS, I’d relate to them, but I wasn’t ready to be public about it. Then, I started working on a solo record in 2018 that I put out in 2019, and I wrote a song called Hot Water Test. I knew that people were going to know.
Phil O’Neil:
For the people that don’t know, and for the uninitiated like me, who I thought I knew so much about this, this goes back 1800s.
Art Alexakis:
1800s.
Phil O’Neil:
They diagnosed for MS by putting people in a hot water bath.
Art Alexakis:
They would wrap them up in burlap, and then put them in 100-degree, 120-degree water. It was either called the “hot water test” or the “hot bath test”. If they exhibited symptoms… I felt coming out and being vulnerable about this disease, and the acceptance of this disease, was like a hot water test of my own.
Phil O’Neil:
Of course.
Art Alexakis:
I’m sure you’ve experienced something similar to that.
Phil O’Neil:
Of course.
Art Alexakis:
When I first came out, I wrote a letter to my social media, or the 250,000 people who were on our social media, and it went viral. I started getting requests for Rolling Stone, Variety, Good Morning America. People wanted to talk to me about… and that’s when I came out and I started being more active, activist about MS.
Phil O’Neil:
Like you, I went home with my wife and I cried for about 10 hours, but I didn’t do what you did. I didn’t Google, because I was afraid to go on and find out what was going to happen. It was only when I started the journey that I became more aware of what MS is, and what it does. I think that my personal advice would be, to anybody, educate yourself.
Art Alexakis:
Absolutely. It’s a lot less scary when you know the parameters and what other people are going through, and when you really get in and understand what a lot of the research is uncovering, and the protocols out there that can help you. Diet, exercise, medication. When I was down there last time, I had MS, but it’s really hot there in the summertime. I had a bunch of outside shows, which were difficult to play. This time, most of our shows are inside, so that’s good.
Phil O’Neil:
How does it affect you in terms of your performances on stage, and also, as far as the progression is concerned, how different is your life now to it was pre-diagnosis?
Art Alexakis:
Oh God, that’s a question that’s going to take a minute to answer. How does it affect me on stage? When I get hot, like most people with MS, I get body spasms, muscle spasms, my leg kicks, I feel inflamed. I feel what I call “feeling MS-ey” where I just feel that, just pins and needles, pain all over my body. I feel overheated. I get very testy. I can get angry easily, I can get fatigue. Usually fatigue, and I get a lot of confusion. It’s hard to focus when I’m hot.
Phil O’Neil:
I read a really interesting meme actually. It was from an MS website and it said, “Not everything is MS.” I guess you start to learn about your body, but in the initial stages, your first reaction is, “Am I having a relapse? Is this MS?” You want to tend to blame everything on that. It’s not until later on that you realize that your body does things anyway.
Art Alexakis:
Well, absolutely, and I’m 60 years old, we’ve got a lot of that to blame as well. Being 60 years old, I haven’t been the best of my body in my life. The last 33 years of sobriety have been much better, but before that, I did horrible things to my body. I think you’re right. It’s a large part of that, but I find that they’re interlocked and they affect each other. Case in point, when I got Covid January of ’21, I was on a medication that was an immunosuppressant. It suppressed your immune system.
Phil O’Neil:
Yep.
Art Alexakis:
That left me wide open to getting Covid, being really bad to me. Now I’m on a medication that’s an immunomoderator. It’s much better. I got Covid when I was over in England just about two months ago, and I kicked it in four days. I missed one show, and I kicked it in four days. I think that when you have MS, when you’re older, you just have to be very cognizant of everything that you’re doing and that’s going on, because I feel like I’m a big jigsaw puzzle with loose pieces, trying to hold it together.
Phil O’Neil:
That’s the thing about MS. It is a jigsaw puzzle. Your Covid experience was quite frightening for you, though. I know when Covid came on the scene, for a lot of us with MS, our first thought was, “Well, I hope we don’t get a relapse as a result of that.” Did you end up getting a relapse as a result of your Covid?
Art Alexakis:
Oh God. It was so bad that it progressed my Covid. I got three new lesions and all of them became inflamed, and I was having really bad side effects. My neurologist at the time was like, “Oh, it’ll probably calm down.” I’m like, “Probably calm down? No.” I went to a new neurologist. She put me on the medication I’m on now. It’s a once-a-month infusion. I feel pretty good.
Phil O’Neil:
Obviously, a testament to that is the fact that you can do a grueling tour with a band, and doing a tour with a band is like getting in the ring and doing boxing, obviously without the punches, but doing some really physical activity. The touring that goes with that as well.
Art Alexakis:
Grueling.
Phil O’Neil:
The in and out of hotels, totally grueling. How different is your touring schedule? Do you space the period between the shows, or is it just business as usual?
Art Alexakis:
Business as usual. It gives me a sense of urgency, because I feel like I have to work as much as I can now because, one, I don’t know how long I’ll be able to, people want to pay money to see Everclear. Two, I don’t know how long I’ll be able to do this. Right now, I feel like I could do it for another 10, 15 years.
Phil O’Neil:
Sure.
Art Alexakis:
Who knows? There’s a sense of urgency where I have to work as much as possible. We had our biggest year in 20 years last year. We played 90 shows. Already, with Australia and all the shows we have booked as of right now, we’ve already got 49 shows booked.
Phil O’Neil:
That’s the thing about the diagnosis with MS. Once you get your head around it, then you suddenly realize that your life does have a sense of urgency, doesn’t it? You start doing things that previously, you hadn’t done. I’d wanted to get my motorcycle license since I was 17. I’m now doing it at 60. All of a sudden, you have this real different appreciation of time.
Art Alexakis:
Absolutely. Appreciation of the lack of time, I think. That’s good, because I’m very grateful. I have a lot of gratitude. I’m very connected to my sober fellowship and community, which I was before, but not as much. Because, I always had a problem with meetings, physical meetings. When I lived in Portland, Oregon, more of a smaller town, and I was a big fish in a small town, people would break my anonymity all the time.
Phil O’Neil:
Right. Yeah.
Art Alexakis:
It just made me like, “Man, I don’t want to do this.” Now, in 2020, I found Zoom AA meetings and it’s mind-blowing. I have a wonderful fellowship of guys who are in the business. Not just musicians, but producers, actors, artists, crew guys, guys that we can all relate to, that we know a lot of the same people. I hope to reach out and meet some people in the MS community too, while I’m down there. I try to do that. I did that when I was in the UK. I’d like to do that down there as well.
Phil O’Neil:
Have people reached out to you since they found out about your diagnosis? What kind of questions do you get from people?
Art Alexakis:
Almost every day. Almost every day. I have people come up to me in Starbucks and, “Are you the guy? You’re Art, right?” I’m like, “Yeah.” “And you have MS?” I’m like, “Yes, I do. You don’t have to whisper it. It’s okay.” Yeah. Yeah.
Phil O’Neil:
Well, that’s it, people don’t quite know how to react when they find out, initially. That was the same thing with me, with my diagnosis. I thought, “I don’t really know how to tell people, because I don’t know how they’re going to react to that.”
Art Alexakis:
Yeah. That’s one of the main reasons I didn’t tell anybody for about three years.
Phil O’Neil:
Then you find that people are fine with it, and are interested.
Art Alexakis:
I found out that a friend who I talked to a couple of times a week… I used to work with him as a colleague, but we were still really good friends and we talked often… and I had no idea that he got diagnosed in 2014. I had no idea. I think it’s one of those things when you go back, when you know, you look back and say, “Okay-”
Phil O’Neil:
“That makes sense.”
Art Alexakis:
I was having a hard time walking five years before this. When they diagnosed me, he said, by the look of my lesions, that it looked like I had had it for, minimum, 20 years.
Phil O’Neil:
Right.
Art Alexakis:
20 years. I don’t know how long… what they said to you about your diagnosis, but that was amazing to me. But as I look back, I saw it creeping up as I got older. Right?
Phil O’Neil:
Yeah. Yeah. Yeah. Once you know the signs.
Art Alexakis:
Right. I think that’s true for a lot of people. Man, I respect… because of my experience in the 12-step program, I am huge on anonymity and I’m huge on whatever people feel like talking about, god bless you, man. You can tell me, “Well, this is… I’m asking for a friend, but-”
Phil O’Neil:
Yeah.
Art Alexakis:
“What are some of the symptoms of MS?” I go [inaudible 00:11:31]-
Phil O’Neil:
Yeah. I find it really interesting as well, with MS, because like you, I don’t want to be defined as the guy that has MS. I have MS, and I have a motto, “I have MS, but MS doesn’t have me.” I certainly found this, by sharing the fact that I’ve got it, I can really help other people and that really is a blessing for me, to be able to use what knowledge I’ve got, and also being able to use my profession on a platform like this. In a lot of ways, the sharing thing, I imagine it gives you so much more as well, it makes your life a lot richer.
Art Alexakis:
You and I are public people, and we choose to talk about it because we’ve seen that it’s been of service to people. That, to me… I’m sure you find something similar… gives me the feeling that having MS has a bigger purpose than just something that happened to me.
Phil O’Neil:
Yeah.
Art Alexakis:
It’s something that I have that other people, the majority of other people, don’t have. I have to integrate it into my life and into what I do. I’m not going to let it hold me down. I’m going to use it. Like you said before, I’m not going to say, “MS has me.” I have MS. I’m going to control what happens to me. One of the ways I can do it is how I eat, and how I work out, and taking my medication, and getting rest. Making sure in the afternoon, I have time for take a nap. I get fatigued.
Phil O’Neil:
Yeah. Because you’ve got to prioritize, don’t you? You really do have to put everything else aside and prioritize yourself.
Art Alexakis:
Well, I’m really good at doing that because my wife is really helping me.
Phil O’Neil:
Yeah, yeah.
Art Alexakis:
She’s like, “You know what?” She’ll call me, she’ll go, “What are you doing right now? Go into your room. Turn off that stupid computer. Pull down the shade.”
Phil O’Neil:
Yeah. My wife’s the same.
Art Alexakis:
“Lay in the dark for two hours.” Well, I don’t feel like I can sleep. Of course, once I do that, I’m like, “Ahhh.”
Phil O’Neil:
I mentioned my motto, and that is that I have MS, but MS doesn’t have me. There’s loads of mottoes that you have.
Art Alexakis:
Sure.
Phil O’Neil:
One of the ones that I noticed that you said, that really resonated with me as well, is, “Doesn’t matter how many times you get knocked down, it’s how many times you pick yourself back up.”
Art Alexakis:
“It’s not how you get knocked down, it’s how you pick yourself up.” Thank you. That’s something that I’ve had my whole life. I wrote a song called One Hit Wonder when we had a lot of success. A lot of people in Portland and different places were calling us “one hit wonder”, and instead of just accepting that or believing that, I just gave them a big FU, and I wrote a song about it. The repeating line in that has become a mantra of my life, [inaudible 00:14:07] “They can’t hurt you unless you let them.”
They can kill you, they can beat you, they can do things to your body, but they can’t make you, the person inside, they can’t give you pain unless you allow it. They, whoever the proverbial “they” are, they can’t conquer you. They can’t control you unless you let them. That’s something that I’ve never done, and that, I give that to my mom. My mom taught me tenacity. My mom was a hillbilly. She’s like, “You want something, boy? You take a bite and don’t let go.” I’m like, “Okay. All right” Still, at 60, I’m doing the same thing.
Phil O’Neil:
[inaudible 00:14:47].Art Alexakis:
Thank God I’ve still got my teeth, right?
Phil O’Neil:
Yeah. If only I had my hair.
Phil O’Neil:
Yeah.
Art Alexakis:
I’m missing a couple of teeth.
Phil O’Neil:
Art, I really appreciate your honesty. We all do. And your strength. Thank you so much for being part of the MS Australia Raw Nerve podcast.
Art Alexakis:
Thank you so much, and same to you. Thank you for handling what you do, and being of service to people with your broadcast, and talking to people like me about it. Because as you know, it does nothing but good. It takes the fear out of it for a lot of people, when people like us can talk about it.
Phil O’Neil:
Thank you so much.
Art Alexakis:
Same to you.
Voiceover:
Thanks for listening to the Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.
