Mark Ruffalo's Story

Mark Ruffalo describes his experience with his acoustic neuroma in this in-depth interview with the Acoustic Neuroma Association.

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I was working on a movie, uh, when I heard, uh...

[ums and ers]

I had a, a dream

that I had a brain tumor.

[deep breath]

And, uh, I - it was like no other dream that I'd ever had.

[inhales]

And so... I'd become friendly with the set doctor on that movie, who was on the board

of, uh, of the local, um [sniffs] uh, hospital.

[deep breath]

And... I went to her that morning

and I said listen:

I had a really scary dream last night,

and you'll probably think I'm crazy, but um...

[deep breath]

...I think I have a brain tumor. And I'd really like to, uh, get it checked out. [chuckles a little]

[sniffs]

[wry] And she said "You ARE crazy, but you shouldn't have to live with that fear..."

"...so I'll order you an MRI tomorrow, er," [he amends with a gesture] "CAT scan tomorrow."

I went in to the hospital with her, and

[amends with a gesture] actually I went by myself, I was gonna meet her later, uh, with the neurologist

[deep breath] And, I, ah,

got my CAT scan, and, umm...

[pause]

....met her in the neurologist's office an hour later,

[inhales] and, uh...

and the neurologist's nurse came in [gestures] and asked her out of the room

and I could hear, uh, [gestures] some murmurings in the room next door

and she came in and she was, uh, [gestures] white as a sheet

and she sat down and she said, um... you have a, you have a mass behind your left ear, the size of a baseb- [amends] the size of a golf ball.

and, um... we don't know what it is exactly, and you'll need an MRI.

And, uh... [nodding, resigned] I was like [nod, nod] yee-up.

Not a great time to say "I knew it," but...

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I didn't really have any tinnitus, or, uhh [repeats with alternate pronunciation] tinn-ih-tuss; I didn't, um, I didn't have any really, uhh, displayed, umm, [shakes head] symptoms...

After I'd found out what it was and got my hearing checked, uh, I'd lost 7% of my hearing, but they thought, y'know, it's a very slow growing tumor, so...

it was ... [ums and ers] ... it was undiscernable to me, over that time - I didn't feel like [gestures] I couldn't hear out of that ear any worse than I could [gestures] in my other ear.

[deep breath] Um. [inhales]

And it was on my facial nerve, and it was on my, um - y'know, then I went and got an MRI and met with the neurologist.

[takes a breath]

And they said, uh, "Well, y'know, uh, the good news is, uhhh, it's not malignant, we don't think."

"We think it's an acoustic neuroma, which is the best of the worst."

[sucks in a breath]

"And, um..."

[lips make a sucking noise]

"...y'know, we think it's operable, we think you should do it quickly, because it's on your facial nerve..."

"...and you have a 80% chance of losing your hearing in your left ear, and a, uh, 20% chance of losing your, uh, facial nerve."

[takes a breath]

"But, um, we suggest you, uh, you hurry up."
[soft clap as he brings his hands together offscreen on his lap]

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My surgery came, probably...

[deep breath]

...from the time of finding out to actual surgery was about four weeks.

and, umm... my wife was, ah, about to deliver our first child.

[inhales]

And, uh, and so, I didn't wanna... ruin that for her, by, uh, breaking her the bad news, that, that, uh... that her husband had a brain tumor, so uh, I -

[inhales]

I waited to tell her till after the baby was born, which was about, oh, three weeks after I found out, and a, a week after he was born.

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It was... scary, obviously. And I also, um, had an odd bit of shame about it, or fear about it.

and how it would be perceived, ah, especially in my profession.

[deep breath]

And, um... and so I didn't really tell anybody, I told, uh, my best friend, and he was the first person I told.

[takes a breath]

And I told, um... my manager at the time, uh, a few days later.

[shallow breath]

And, uh, those were the only people I really told.

For - till I was gonna - about to get my surgery. [shrugs] Then I told my family. My dad I told soon too. And then uh, one other guy, and, uh -

- but, but I really kept it under wraps, because, uhh, it was already a lot to deal with, and, uh,

people [inhales] sometimes tend to make your, uh [chuckles wryly] your tragedy their tragedy.

And, I, I, I didn't have the energy... to deal with that, and, and what it meant to other people was... so profound...

[slightly shaky breath] Uh.

and so scary to them, I just didn't want to visit that on them till it was time to do it.

So I carried it, pretty much, quietly for a while.

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Well my greatest fear, honestly, was that I was gonna die! [laughing a little]

Uhh...

I didn't know whether it was benign or malignant when I found out about it,

and my dream was so startling that, uh - and it was so [gestures] uhmm, the impression from the dream was that it had to be dealt with immediately, and because of that, I had an added sense of anxiety.

And, um... I just had this fear of dying on the operating table.

[haltingly at first] That was kind of based in what I'd read about, um, the anesthesia, and the, uh, how some people react to it -

- and I'd had surgery in the past and had a really bad reaction to the anesthesia.

[sucks in a breath]

Anyway, so I, I was uh [smiling] honestly afraid of dying! That was my biggest fear.

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As soon as I, I found out about it I went on the internet, uh - thank God we have the internet - and, uh, but there wasn't a lot of material up on it at that time.

Y'know, at this time, this is twelve years ago, so... [takes a breath] acoustic neuromas at that time weren't quite as popular as they are today.

I think they've probably tripled, uh, since, since I got mine.

[deep breath]

And, uh, there wasn't - not a lot of information; there was the ANA - and I was, honestly, was afraid to, uh, to really reach out.

I talked to somebody, briefly, and it wasn't, uh, it wasn't very, uh, [starts laughing] it wasn't very, uh, [gestures] how shall I say it - comforting!

[is adorable]

Um - and - what I was facing with my paralysis.

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Well, when I woke up, I was SO sick...

[chuckles] [fumbles for words]

[takes a deep breath, exhales]

I was not dead, which was good, but I was so sick I almost wished I was. [laughing softly]

I mean, it was - I was SO sick, from the anesthesia.

[takes a breath]

And, um, [bites lip, making a tiny squeaky sound]

Then I felt - y'know, they told me the surgery went off well.

and they, uh... my father told me that my heart had stopped briefly, on the operating table, and so that was scary to me.

[deep breath]

And, um...

They told me that the um, the surgery went well; they got all the tumor; they preserved my nerve, but I just heard a ringing in my left ear.

And I, uh... [laughs once] I sort of - before I went into surgery [gestures] I, I remember I was [fiddles with pocket, sounds slightly sheepish] y'know, when these things happen, you sort of remember your religion a little bit

[takes breath]

And I was, uh, praying!

and sort of bargaining with God [laughing at himself] I was like [stoner voice]: hey man [gestures] uhh, please, um, y'know....

[suddenly serious] ...don't take my face, and don't take my life.

Cuz, without my face I can't really support my family.

And, uh, without my life, I DEFINITELY can't support my family.

uh, but you can take my hearing.

And, uh, be careful! [gestures emphatically] what bargains you made, cuz uh, those, uhn, sometimes those're the one that are stuck wi- to.

[deep breath]

And, uh... yeah. So I woke up, and realized I'd... lost my hearing - [sniffs] - and, um, the first day, y'know, I was just out of it.

Then the second day they in, they were [touches cheek] checking my face, and, uh, my face, uh, began to go paralyzed.

[takes a breath]

So by the third, mm, third day out, fourth day out from the surgery, I couldn't close my eye...

and, uh... and I couldn't move my face - [gestures] my left side of my face - and that was pretty alarming,

it was alarming to me, I, y'know, I think it was... confounding to my doctor, he really didn't know what was happening. Thought it was swelling.

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I had a lot of weird complications [windmill gesture] I think, ongoing complications, because of that, that made my recovery a lot different than other people's.

But - [sniffs decisively] - the things I did do, to support myself, and I think this is really important for people, is to find, um, there should be a, um, a post-op, kind of protocol, and I don't know if ANA has that now, they didn't then,

and I did a lot of walking, y'know, I had a, uh... the one, the one other time that I feel like I've had any divine intervention in my life,

other than that dream, was another voice saying, "Keep moving."

[deep breath]

And that just became my mantra. Just keep moving.

Keep trying to move my face. So every day I'd get up in the morning [starts twitching his facial muscles to demonstrate] and I'd try to make those muscles move.

and I'd focus on them, and I'd spend about an hour doing that every morning, to no avail [deep breath] um, and I'd walk. And I'd walk, and I'd walk, and I'd walk miles and miles and miles and miles and miles.

And those two things, I think [breathes in] started to help me with my balance?

My balance came back a lot quicker than a lot of people's.

And um, and uh, I think also, uh, getting some of these toxins out of my body.

[takes breath]

I did acupuncture [points emphatically], I did myofascia [points], I did craniosacral therapy [points], I did herbal therapy [points], I did massage [gestures], I, um.

I did every alternative thing that, uh, that I could find... to make me feel like I was in power after my post-op.

And uh, I think it's really important to find some sort of, um, group, or, uh, support team, after the surgery, that is uh, that is more focused on you, uh, getting to be wholesome again than it is just getting that tumor out of your head.

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I was looking at the end of my acting career! [laughs, fiddles with ear] and I kept a, uh, I kept a diary, uh, I kept a video diary

[takes a breath]

uh, and, um, that became a way for me to deal with uh, um, my, uh, fears, and uh, and then to also [gestures] to see any progression in my recovery.

and to mark my progression, to give me a, give me a sense of uh, y'know, of [gesture] of actual becoming normal again, er, [makes air quotes] my idea of normal.

Um - and, uh, and, y'know, my, my relationship with my wife, uh, deepened, uh, enormously at that time.

And so, my emotional recovery [deep breath] also became [huffs] um, understanding what I was made of, as a man, and uh, uh...

when you're faced with a difficulty like that, uh, you uh, you draw upon parts of yourself that you, you didn't really understand had existed.

[takes breath]

And so, the tumor in a odd way started to become this, uh, a blessing in disguise, as, as time went on -

[scratches nose] and as time has progressed over the years, as well.

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Under the circumstances it was pretty amazing, uh, y'know, we're newlyweds, we had a newborn colicky baby

[sighs]

We were - we'd decided we'd go upstate, I couldn't, I couldn't be in the city, it was too intense for me...

...uh, especially on the steroids, 'cuz they uh, they open up your adrenal glands, so you're [sucks in a breath, swallows] you're living predominately in a, in a kind of fight-or-flight [gestures] reaction to the world.

[sniffs] And so [swallows] I um [smacks lips]

the city was, was overwhelming: the noise [soft clap as he rubs his hands together], the, the [gestures] intensity, the energy, I was very acutely aware of it

and so, we had a place in upstate New York and I just said - it was literally two days before 9/11 - let's go upstate, and let's recover up there.

But I didn't - we didn't really know anybody there, and didn't a support group there [inhales] and, um.

y'know, then [gestures] 9/11 happened, and uh we couldn't get back into the city, [gestures] our house was down here, and so uh

[gestures] down in the area that was shut off, and so uh, [breathes in] we spent the next, basically, four, four months up, up there, recovering.

And it was just the two of us, and it was hard.

And, uh, the steroids didn't help. They made it, uh, really difficult.

And I wasn't getting any better.

And, um.

And, uh, she was an absolute, uh, mm, saint! Uh, but it definitely tested every [inhales slowly] aspect of our relationship, and our friendship.

and um.

the future, our ideas for the future,

uh,

it, it put everything, uh, to the test, in, in a really [laughs lightly] in a really heavy way!

[laughingly] For so early a, uh, marriage!

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It was about a year. Uh. For me. Um. Y'know, uh, there was a time -

[interrupts himself, suddenly louder] after I, I started to come off the steroids, shortly after I started to come off [amends] taper off the steroids [deep breath]

Uh. Which was about... ten months.

At the ten month mark, uh, my face started to come back.

Which was, itself, uhh, kind of unheard of, because

[deep breath]

after about seven months, if your face stays paralyzed, they sorta... [rueful smile] ...think the nerve is dead, y'know.

[deep breath] Um.

I think in great part cuz of the acupuncture, uh - it was, it was after an acupuncture, uh, uh, session,

- and I was going probably three or four times a week at that time -

uh, after an acupuncture session, I had the [indicates face] first movement in my eye; it was just literally... [eye twitches minutely] ...that.

[pauses, demonstrating how little movement there was in his face]

And I was [gestures] looking at myself in myself in the mirror, the car mirror, [sounds very satisfied] as I did after every acupuncture,

and I was just willing it [chuckling at himself] to move. [inhales]

And it just moved [indicates face] a tiny bit. It was just, just a little glint of a move.

The, the [evocative hand flailing] neural pathways kinda got mixed, and so...

...or, what I'd thought [gestures] was, was going like this [raises and lowers eyebrows] was actually [scrunches face] going like this.

And I had to - [screwing motion] - a lotta things got switched around.

[deep breath] And, uh...

And so I had to kinda relearn [grabby gesture] to use [rubs eye] that side of my face.

But, y'know, [gestures] here I am, I'm still acting. [warm, happy]

And, uh, and... A year after that, I, I, I got a great job [sniffs] and um, [gestures, soft slap of hand on arm off camera]

y'know, I've been really lucky.

Most of it's come back.

I mean, [shrugs] yeah, it's, it'll never be back, uh, a hundred percent, but - and I, and I, and I really was afraid of that, and I was afraid to tell people that [gestures]

but it, it, y'know [rubs nose, gestures] I've integrated it all into my life. And here I am, better than - way better than I was then.

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I, I'm a lot - I think I, y'know, I learned a lot about life, and mortality, and fallibility, and

uh, and so, [gestures] y'know, [touches face, gestures] on a spiritual, emotional level I just think I'm a much bigger person, than I was before that.

[deep breath] And, um...

y'know, to overcome adversity is a, is a [gestures] is a great thing for a man or woman.

And uh [breathes in] and uh...

understanding [gestures] y'know, my strengths and my weaknesses, and, um.

[gestures] My ability to, y'know, to not give up, [flops hand] persevere, uh [hand flop] have all [gesture] fed into my confidence

and my uh, willingness to uh, be more fearless in the way I live [rubs nose] my life.

And, umm.

More empathetic, uh, to people.

And, uhm... yeah!

After that, I - became much more grateful, uh, for what I had!

And, um [scratches shoulder]

I hope I haven't [laughing] lost any of that as time's gone, time's gone on.

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[clicks tongue]

I'd say "be patient."

[inhales] Um.

Y'know, we live in a very fast time, and um.

We expect things very quickly.

And, uh, we're, we're trained to do that.

And, uh, uh, y'know, we don't wanna wait for anything.

And I didn't wanna wait for my recovery.

[deep breath]

And I didn't want to wait for what my body needed to go through in order to recover and to feel normal again;

I wanted to feel normal, I wanted to get back to my life, I wanted to be the person I was before... [breathes in]

Uhm. I, I, I was - and I would get frustrated and angry, uh, at myself, for not, uh.

And I'd - so I'd say to myself, "Mark, be patient... these things... have a gift in them somewhere..."

"Uh, and... and, just be patient, and. And... accept the journey that you've been, uh, that you've been asked to take. Whether you wanna take it or not."

"Take it with some grace, and dignity..."

"...and know that, um. You're gonna - y'know, you're on this road alone, ultimately?"

"Ah - yes, there'll be people around you to help, and so on and so forth, but ultimately, this is a journey into, uh, you."

[sucks in a breath]

"And, uh... and in the end, you will be better for it."

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[laughs gently]

Sleeping.

Sleeping on my good ear. It is amazing. [laughs]

I could sleep through anything.

Uh, I've had two other kids since then, and, um... [laughs] I could sleep through babies screaming right next to me...

[breathes in] Uhm...

I could sleep, I could sleep through anything.

And, uh, that's probably the greatest gift of single-sided [chuckles] hearing.

And it's - it cannot be overlooked, [scratches nose] nor, uh [chuckles] nor given too much credit.

[inhales]

Seriously.

Interviewer [indistinct]: I have to give you a hug! Mark: Oh!
[sound of chair crackling as interviewer gets up]

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Mark [V/O]: We're survivors.

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