Silence: Stories about finding our voices

This week we present two stories about the sounds that silence can take on.

Part 1: Kambri Crews attempts to smuggle a gift into prison for her father, who is deaf.

Kambri Crews once lived with her deaf parents in a tin shed in Montgomery, Texas. She now owns and operates the performance venue Q.E.D. in Astoria, Queens. Kambri is also a renowned storyteller and the author of the critically acclaimed and New York Times best selling memoir Burn Down the Ground (Random House). She has performed on The Moth (MainStage & radio), Women of Letters, Risk! and Mortified. In 2014, Kambri opened QED, a performance venue meets community and learning center. With over 100 events per month ranging from comedy, storytelling and music to classes like embroidery, cartooning and writing, there is something for everyone. Since its opening, QED has been featured on The Jim Gaffigan Show, NY1, The New York and LA Times and countless other media outlets. Performers have included the super famous like Leslie Jones, Kate McKinnon, Janeane Garofalo, to the first-time performer and everyone in between. Also a public speaker, Kambri has given speeches for Girls, Inc., University of Texas, Texas Book Festival, University of Oregon, SXSW (South by Southwest), DeafHope, and many other schools, colleges, book festivals, and events.

Part 2: As Kristine Lycke enters kindergarten, her mother starts treatment for a mysterious illness.

Kristine Lycke is a Daughter, Mother, Survivor, Warrior. She holds an Honors B.S. Degree in Applied Psychology from Farmingdale State College, which she received – along with the 2017 SUNY Chancellor’s Award for Student Excellence- just 3 years after completing treatment for Stage III Invasive Ductal Carcinoma (breast cancer). Cancer has always been a part of Kristine’s life, having lost her mother to the disease when she was only 8 years old. Wanting to give back to the facility that saved her life, Kristine works as a Patient Care Coordinator at Memorial Sloan Kettering Cancer Center. When she is not working, Kristine enjoys spending time with her wife and learning far more about My Little Pony than she ever thought possible from their 6 year old daughter.

 

Episode Transcript

Part 1: Kambri Crews

Hey, everybody. Hello. Before I tell my story, I would love to give you guys a fun little fact, a little bit of trivia, I guess. In prison, gum sells for a dollar a stick. It’s pretty impressive, right?

On the list of items that my dad, Number 1133944, wanted me to smuggle into him in jail, gum seemed pretty harmless. He'd also asked for a needle and a hundred dollar bill. No, I'll stick with the gum. Thanks, dad.

My dad’s prison is in Huntsville, Texas and it’s a lot less scary than I expected. Honestly, it looks like a junior high, just wrapped in barbed wire. Everyone there is really friendly in that stereotypical Texas friendly way, you know. For example, there's this one guard who inspects me in my rental car when I go to visit and he is straight out a central casting.

He's potbellied, has a ten-gallon hat, cowboy boots and a big, white, handlebar mustache. He looks at my driver’s license and he goes, “New York City, huh. Get a rope.”

Kambri Crews shares her story with the Story Collider audience at Caveat in New York City in September 2019. Photo by Zhen Qin.

Kambri Crews shares her story with the Story Collider audience at Caveat in New York City in September 2019. Photo by Zhen Qin.

Yeah, I know. He just made a joke about hanging me at a prison that’s kind of famous for its executions. But he's really nice. He's really nice when he says it and he's really slow. He is like just that Texas slow, but also he's wearing cowboy boots. Like what would he do if somebody just busted through the gate? Like, really, what would he do?

But I guess he figures that somebody would never be a girl in high heels from New York City and she most definitely would not smuggle a jumbo pack of Wrigley’s Juicy Fruit in the waistband of her slacks from Banana Republic. Not me, of course.

So he's inspecting me with his metal detecting wand and it screeches exactly where I've got the gum hidden and I’m like… I tense up and he goes, “Oh, don’t you worry, sugar. That’s just your belt buckle.” I’m not wearing a belt.

Juicy Fruit, however, is wrapped in foil. Not something I'd considered and, apparently, neither did he because he's like, “You have a nice visit with your daddy now,” and he just sends me on ahead.

I’m like, “All right. Great.” I got the Juicy Fruit safely tucked away.

And I go inside and I wait for my dad to come into view. And when he does, my God, my breath is just taken away. It shocks me to see him hunched over and in pain. It looks like he can barely walk. Like, my God, what happened to him? He had mentioned a couple of prison fights but this is not what I was expecting.

He's like in tremendous pain and I don't want to have him see me upset so I put on a fake smile. I’m like, “Hi. Hi, dad.” He just concentrates on each and every painful step and my heart just breaks. I think, “God, I've let my dad rot alone in prison.”

And the feeling overwhelms me and the tears well up in my eyes and I start to cry and that’s when my dad stops, stands perfectly upright and then starts dancing the jig. “Ha-ha. Ha-ha-ha.” And he signs in sign language, “Ha-ha, see what happens if you don’t visit me more. I’m an old man.”

Then he starts walking with his trademark strut, cockiness just dripping from every pore. Steel bars, they can’t cage charisma.

My dad, who’s in jail, is deaf and a prankster. So I mean, yay. Great, dad. Good job. I’m like, “You jerk,” and we give a big hug. Not a long one, you know.

“No touching.”

“Sorry. Okay.” And I hug my dad.

Yes, my dad is deaf, but also his sisters are deaf. My mom is deaf. My mom’s sister is deaf. Her parents, all her aunts and uncles, almost everyone on my mom’s side of the family is deaf. And this usually prompts a lot of questions so I will go ahead and answer the top three FAQs so we can just all stop thinking about them, okay?

One, yes, I know sign language. Two, I know how to talk because I’m not deaf. And three, nope, I don't know Braille. Sorry. That’s a fun menu. I like all the little bumps and stuff. No, I don't know Braille.

And another one people do want to know is that generational deafness on my mom’s side of the family, is it hereditary. Well, that’s actually quite rare. The statistic is 90% of deaf parents have hearing children and 90% of deaf children have hearing parents. So yeah, it’s very rare. Do the math. Like it’s a small anomaly. My mom’s family is an anomaly.

And then another one I hear all the time is like, “Oh, my goodness. Oh, I’m so sorry your family is deaf. Oh, your whole family? Even your mama too? Oh, bless your heart.”

Bless my heart, bitch? I said they were deaf, not dead.

Think about it for a second. You're a kid. Your parents don’t know what you're doing. The down side is what exactly?

Our trailer was the place to hang out. We could listen to music as loud as we wanted whenever we wanted. Sneaking out was walking out the front door. “Bye, mom, bye, dad. See you later.”

Sneaking back in, just as easy. As long as we didn’t vibrate the trailer, which was up on stilts, or shine headlights in their face or something they didn’t know what we were up to.

Anyway, back in prison with my dad, we go out into the prison visiting yard and I notice my dad has a new tattoo. Like, “Where did you get that?”

He says, “Oh, a boy in the textile mill gave it to me for my 60th birthday.”

“Oh, really?” It’s a Tasmanian devil with his tongue sticking out doing the ‘I love you’ sign. Like, oh, my God. Real mature. I guess his decisions, like he's in jail so he didn’t have good decision-making qualities, I guess.

‘But speaking of birthdays, I have a surprise for you. I have gum.”

And he's like, “Whooh, gimme, gimme.”

I’m like, “Dad, calm down. Calm down.” I look around to make sure the coast is clear and I slowly pull it out of my waistband. And he just rips it out of my hand, tears it open and starts chomping on a piece of gum with his remaining front teeth, his back teeth having been knocked out from those aforementioned prison fights but also the dental system in prison isn’t topnotch like they all advertise.

So he looks like a cow chewing cud. He's like num, num, num. And it only takes a couple of num, num, num for the taste to overwhelm him. He hasn’t had gum in years.

He closes his eyes and he leans back and he puts his arms out like he's praising Jesus. He's like, “Whooh, long time. Wow. Tastes different. Long time, I guess.”

And then out of nowhere, just starts shoving sticks of gum in these secret pockets that he's cut in his shoes, right? His Converse sneakers he's got little hidden pockets between the cushion and the soles of his shoes and he's shoving stick after stick of gum.

I’m like, “Dad! Dad, what are you doing?”

He says, “I can sell these for one dollar a stick.”

“Oh, my God. What?” And he starts shoving stick after stick of gum in his other shoe. And he's being really obvious about it, doesn’t seem to care if anyone is noticing.

I’m like, “Oh, that is why he wanted a jumbo pack.”

He specifically was like, “Jumbo. Don’t forget jumbo pack.”

I’m like, “Gosh, he really likes his Wrigley’s.” I thought like he wanted a fresh piece every 30 minutes or something. I don't know.

No, I’m a mule. That’s what it is. I am a mule and I’m freaking out. I look around to see if anybody has paid any attention or seen what’s going on and that’s when I notice this really big, beefy inmate to my left who’s got a horrifying facial disfigurement. Part of his skull is missing. His eye is missing. His mouth is drooping and saliva drips out and he has to mop it up with a handkerchief.

I’m like, “Oh, my God. What happened to him?”

He says, “Oh, him? He killed his wife and his kids and then tried to kill himself but it didn’t work. Good man. Quiet.”

‘Quiet’, says my deaf dad. And good? Well, it’s all relative if the disfigured murderer is a good man in my dad’s eyes, because, if he isn’t, I mean, well, what does that say about dad? Judge not lest ye be judged. That’s kind of how you get by on the inside.

And I’m really contemplating that and I’m getting overwhelmed by the fact that I’m a mule. He's smuggling gum inside and this disfigured murderer. What’s happening?

That’s when I hear a loud shout from across the room. “You!”

Kambri Crews shares her story with the Story Collider audience at Caveat in New York City in September 2019. Photo by Zhen Qin.

Kambri Crews shares her story with the Story Collider audience at Caveat in New York City in September 2019. Photo by Zhen Qin.

It startles me and I flinch. My dad, being deaf, doesn’t hear it but he sees me flinch and he says, “What’s wrong?”

I said, “I don't know. I heard someone scream.”

And that’s when I hear it again. “You!”  

And I look across, it’s a man in a beige suit, cowboy boots, cowboy hat, Texas. I recognize his face from the portrait on the wall. He's the warden. He's pissed and he's looking at me? Or him?

“Him. You, come here now!”

My dad gets up, saunters over like no big whoop. I’m like what the hell is happening?

The warden knows my dad is deaf but he screams anyway, like that’s going to help. He's like, “What’s in your mouth?”

My dad opens his mouth and shows him this wad of chewed gum on his tongue and the warden is like he's going to pop a gasket. “Where did you get that?”

My dad, without hesitation, points right to me. “Her.”

I’m like, “Oh, my God. He's just ratted me out quicker than a wink.”

The warden makes him spit the gum out and my dad comes over like, yeah, this happens every day, just like junior high. You know, you can’t have gum in school.

And I am freaking out and the warden, his eyes are just boring down at me. So I just pretend like I’m deaf. I’m like, “What’s wrong?”

And my dad says, “Oh, you're not supposed to have gum.”

And I’m like, “Oh, sorry, I didn’t know.” Fuck, I got to get out of here.

So I've never really been in trouble my life and I’m shaking. I wish I were exaggerating. It was like this. So I grab my Dr. Pepper and I’m dribbling Dr. Pepper down the front of my shirt.

My dad is like, “Are you shaking? You scared? Pussy.”

For those in the side who are listening to the podcast, imagine a horse’s vagina. That is the sign for pussy.

Yeah. Yes, I am shaking and, yes, I am scared and, yeah, I guess that makes me a pussy. But you know what else I am? Free. And I’m getting the ‘F’ out of ‘D’.

“See you, dad. Good luck with that strip search you got coming. I’m getting out.”

And so I’m just like, “Bye, everybody. Bye, bye, bye,” and I speed walk across the parking lot, because you don’t want to run in a prison.

So I’m just like, “Bye. Bye. Gotta go, bye.”

And everyone is still just slow as molasses. “Oh, bye.”

And I don't know what’s going to happen with my dad in the strip search. And because he's deaf, I have to wait for a letter. A few weeks later, I get a letter from dad.

“Surprise, I still have the gum. I kept some for myself, I sold some others, and I paid off some debt,” because he has debt in prison.

He goes, “Next time, I want you to sneak in a Dairy Queen Cheeseburger.”

“Okay, sure. Where am I going to hide that?”

Thank you.

 

Part 2: Kristine Lycke

I’m the youngest of her four children. She was concerned about the fact that I would be starting kindergarten. She was worried about having an empty nest long before empty nest syndrome was even a thing.

I remember as spring turned into summer, tension in the house started growing. There was a lot of whispering, secret conversations, discussions happening behind closed doors. At some point, my parents sat me down and explained that she needed an operation and who would care for me in her absence. My father made it clear that questions were not welcome. I was to listen to my brothers and sister and be on my best behavior while my mother recovered.

She came home in bandages all over her chest. She was frail and devastated. One of the most vivid memories I have is her sitting in the living room in the dark on the couch crying. She was sobbing but when I asked her what was the matter, she would respond with, “I'm just sad that you're going to start school soon.”

Another memory I have is her being devastated over the fact that she couldn't take us school shopping. She was forced to ask my aunt to take her place.

As I started kindergarten, my mother started treatment. That's what they called it then, treatment. But every now and again I'd hear someone refer to it as chemo.

My mother didn't drive so she was forced to have others take her. Her cousin Josephine was my favorite chauffeur. She would spend time playing with me during the hours that my mother spent receiving her treatment. Promises of bagels and Happy Meals kept me on my best behavior.

Kristine Lycke shares her story with the Story Collider audience as a show presented in partnership with Memorial Sloan Kettering in New York City in December 2018. Photo by Zhen Qin.

Kristine Lycke shares her story with the Story Collider audience as a show presented in partnership with Memorial Sloan Kettering in New York City in December 2018. Photo by Zhen Qin.

But other times it was my mother’s sister who would take us, and she would just drop us off at the hospital, leaving me to sit outside in a hallway waiting for my mother for those hours she was in during treatment.

The surgeries and the treatment, they were torture for my mother. The days following treatment, she was so, so sick, but like my mother, she did her very best to keep it to herself. But I knew something was terribly wrong.

The surgeries and treatment, they were devastating for my mother, but what really destroyed her was gossip. She had found out that a nurse, who was working in the local hospital where she was treated, had shared information, private intimate information regarding her treatment with people at a local fire department and where my parents had been once active.

Almost overnight, my parents decided to sell their house and move down to Williamsburg, Virginia. It was a place they loved dearly, and I can only guess now a place where she could really escape the cancer.

Friends and family were told that she was in remission. We moved and started a new life. On June 25th 1983, as the sun set, my sister and I were running around the house playing tag when my father and my brother pulled up. We ran to them and my father, not being able to connect eye to eye kind of blurted out, “Your mother passed away this afternoon.”

Not really understanding, I looked and I asked him, “When is Mommy coming home?”

He couldn't look back, he couldn't respond so it was my brother Kevin who looked at me and said, “Mommy is never coming home. She died.”

Kevin took us in his room to talk, to console us as he often did, and my father made phone calls and arrangements. We were to move back to New York immediately.

I had never heard of a wake, let alone ever been to one. I remember holding her cold hand, and every now and again I would ask my father to lift me so I could kiss her gently on the cheek. I held it together pretty well for a kid until the morning of her funeral when the funeral director closed the coffin. It was in that moment I realized the finality that I would never see my mother again, that I would never hold her hand or kiss her cheek.

The years after my mother died, my siblings and I tried to piece together the mystery that surrounded her illness, and as a teenager I found her death certificate. I can't say that I was shocked when I found out it was breast cancer.

I was angry that they hadn't shared the truth with us but another part of me understood. See, this was 1983. Breast cancer wasn't about pink ribbons. It was about stigma and shame. And I understood why my mother might have wanted to keep it close, going back to that gossip and that shame and that devastation that she felt when people were talking about intimate details of her body.

If anything good was to come of that, it was that I was vigilant in my screenings. Since age 25, I had endured mammograms that turned into ultrasounds that turned into biopsies that ultimately turned into nothing. So in August 2013 when I was nursing my then ten-month-old daughter and found a lump, I wasn't particularly alarmed.

My OB-GYN didn't hesitate, given my mother's history, and he ordered the mammogram. And again I thought this is just something that's going to turn into a sonogram that's going to turn into a biopsy that's going to turn into nothing, except it was something.

I called my wife and explained to her that they think it's cancer. She hurried to the breast imaging center, she made arrangements for my sister to take care of the baby.

As I consented to the biopsy, the nurse asked me, “How old was she when she was diagnosed?” I quickly did the math in my head. She was 38. I was 38.

I slowly choked back the tears but came apart when I realized that I was going to die. She had died and I was going to do to my child just as she had done to me, except what's worse, my daughter won't even remember me.

I remember waking up after surgery and my surgeon, angel-on-earth Alexandra Heerdt was sitting at the bedside. She wasn't who I expected to see so I knew it was bad news. And she explained that the cancer had spread from the breast to the lymph nodes. She reassured me that the prognosis was still the same. It was excellent. But that the treatment would change.

I had already lost both breasts. Now, I had to lose my hair. I endured eight rounds of dose-dense chemotherapy and 33 rounds of radiation, multiple surgeries and, just to keep life interesting, an infection that landed me in the hospital for five days, which was probably the worst for me and my wife.

I just want to mention that prior to surgery, I had found myself crying every day. The month between diagnosis and actual surgery is a living hell. You have this ticking time bomb in your chest and you just want it out. But I was a stay-at-home mom at the time with this young baby who I thought was going to be a head case because her mother kept crying.

Kristine Lycke shares her story with the Story Collider audience as a show presented in partnership with Memorial Sloan Kettering in New York City in December 2018. Photo by Zhen Qin.

Kristine Lycke shares her story with the Story Collider audience as a show presented in partnership with Memorial Sloan Kettering in New York City in December 2018. Photo by Zhen Qin.

I reached out to one of the social workers at Sloan-Kettering and I explained to her, Roz Kleban that I was afraid that I was causing great detrimental harm to my daughter. She assured me that Maddie would be just fine, that crying was okay, and that whether or not I cried, Maddie would know something was wrong with mama anyway.

Roz asked me, “Christine, what are you so afraid of?”

And I said, “That I'm going to die.”

She said, “Did anyone here say that you were going to die?”

Defensively, I shouted back, “No.”

And she said, “Then stop living as if you are.”

That phone call with Roz changed everything as she reminded me it was my experience, my story. I was not her and Maddie was not me. I became the author of my own life.

None of it was easy but I was blessed, blessed with a devoted wife, an amazing daughter, an extended family who cared for us. And part of that extended family was everyone we encountered here at MSK.

Part of what makes this difficult is that I carry the BRCA gene mutation and so we don't know yet if my daughter carries the same mutation that killed my mother and caused my cancer. So we have devised a plan with the social workers here at Sloan-Kettering to discuss with Maddie openly and honestly with age-appropriate dialogue how to cope with me having been diagnosed, lived through, and surviving cancer.

Maddie is a pretty bright six-year-old and she asked some challenging questions. Lately, she's been asking, “Well, how did you get cancer in the first place?”

I explained that I have a naughty gene that doesn't work the way that it normally does in most people, and it doesn't fight breast cancer effectively.

More recently, she asked me, “Do I have that naughty gene?”

And I responded, like a punch to the gut, “Maybe.” But I assured her that her mother and I, along with everyone here at MSK, will do our best, everything in our power to make sure that she stays healthy.

I'm not sure how my mother would feel about me standing here on this stage sharing her story. I hope she's proud of me, but what I know for sure is that she'd want her granddaughter to live a long and healthy life. I'm counting on this institution, this place that collectively saved my life to fix this naughty gene, to prevent cancer, to find a cure. We can't do that alone. We can't do that by hiding. Only by doing it together, openly and honestly.