Diane Shader Smith
In May my mom died, last week my daughter. This has been a very difficult year. While our hearts are broken, I don’t want today to be about grief. Instead, I want to share a few memories of Mallory and hear stories from some of her closest friends and family.
Mal called herself a cockroach, saying CF keeps trying to kill me but I don’t die. She knew dying was a real possibility and in fact, left written instructions. These are her words:
- I want my family to lean into each other, not shatter, while dealing with grief.
- I want my parents to support and embrace Micah and cultivate a rich family life with him despite his making choices they might not agree with.
- I want to be remembered – all the stages of my life, NOT just me as a sick person at the end.
- I want my death to bring positive change, by spurring people to love more fiercely, take advantage of opportunities, enjoy their lives, and to give back and make an impact in healthcare, social justice, and the environment…these are issues about which I was passionate.
- I want my mom to read my journals, and edit them to get rid of anything that’s mean or hurtful. I want my journals to provide insight and material for people to feel like they have something left of me to hold onto. I wouldn’t want it to be something that hurts anyone because of something I wrote when I was emotional or upset years ago.
When Mal was getting ready to leave for Stanford, I told Maria that with Mal gone we didn’t need live in help. She was part of our family and so I would do whatever I could to her find another family for her to work for. Mal interrupted me to say that if Maria wasn’t welcome to live with us, when it was time to come home for Thanksgiving vacation, Mal wouldn’t be coming home. Maria is still living with us 7 years later and is here today.
A few years back, when it was clear to me that our beloved Dewey, 11 year old white lab, was struggling to get up because his hips were bad, I told everyone it was time to put him down. Mark and Micah weren’t happy with this but seemed to understand I didn’t want him to suffer. Maria called me a murderer. Mallory simply asked, are you going to put Grandpa down too because he has a bad hip?
There are so many stories of Mal and her instinct to protect the underdog, or in this case, the dog.
As many of you know, I was Mal’s Wingmom. Got the nickname years ago, when we were on vacation in Hawaii and I would troll the beach for her finding kids to play with, and in later years, when we were out and about with her friends I’d call out CBAs, which stood for cute boy alert. As the years passed, and her health declined, my job as wing mom was about creating a life for her inside our various homes with dinner parties and movie nights so that she wouldn’t be isolated. Through all this I’ve come to care about Mallory’s friends with the same love I do my own amazing friends and often say I channel my inner 25.
A few weeks ago, right before Mal went into the hospital for the last time, Mark surprised me with this Wingmom license plate. I thought it was super cool but wanted it as a work of art, not for my car. Mallory looked at Mark and quietly pulled me aside to say that Mark had been working on getting this for me for a year and she was afraid I’d deeply hurt him if I didn’t use it the way he’d hoped. This was vintage Mallory – always reading social cues and worrying about people’s feelings.
On one of my visits to LA, when Mark was in Pittsburgh, I tried repeatedly to reach Mark but he didn’t answer. Mal had had a bad bout with hemoptysis and I was worried sick. After four tries I gave up. About 15 minutes later Mark tried to call me but I was so upset he hadn’t taken my calls I decided to punish him and not answer. He was completely on to me (I guess it’s hard to get away with anything that transparent after 30 years of marriage) and said if I was going to be so childish we should just get a divorce. Mal was a witness to this exchange and gently told Mark he was overreacting. She explained to him that I was distraught at leaving her and to cut me some slack.
How Mallory was so wise, so caring is still a mystery, but it explains why she was so beloved … as she always put the needs of others before her own.
Mal’s friends are too numerous to name. But I can tell you she had great taste with regards to whom she chose to hang out with. In all the years she made her own plans, I never ever had to suggest that someone was NOT a good influence. Same for the boys she dated. Starting with Julian and ending with Jack, we came to care about each one of them and saw them through her filter – as kind, caring and beautiful people. When friends would complain that their moms didn’t approve of their boyfriends, she would thank me for accepting each of her choices. I told her it wasn’t hard to do as she had impeccable taste. Especially with Jack.
I had planned to tell you more about this amazing young man and the beautiful relationship he shared with my daughter, but Jack is going to speak and since he’s the ONLY non-family member who gets a pass on the time limit, I suspect you will understand why we have grown to love him and consider him family.
Just want to share one moment, this past summer when Mal, Jack and I were hanging out on the couch in Pittsburgh. Jack turned to me and asked if I would ever let Mal live with him. I was incredibly touched by this respectful and mature gesture but something inside me said I’d better not answer. I took a pause and in that moment, Mal jumped in and looked at Jack incredulously and said, why are you asking HER. I can decide with whom I will or won’t live. Despite her easygoing nature and skills of diplomacy, she knew when and how to assert herself.
After transplant, in the brief period between when she’d finally gotten past the unbearable surgical pain and before she wound up back in the hospital, we spent MANY hours talking about Jack, their future and what she wanted for herself. She so wanted to live with him at the beach but said he might be moving to the East Coast for work or grad school. I said whatever she wanted to do was fine with me but the one thing I didn’t think she should do is have a long distance relationship once she was FINALLY able to live with some semblance of health. Mal said she would never do that. Her words, Mom, Jack has made so many sacrifices to be with me I will support him in whatever he wants to do. Always unselfish, always putting the needs of others before her own. That was Mallory.
Mal was also an overachiever. In addition to being a 3 sport athlete in high school and winning Athlete of the Year, she was a straight A student and Prom Queen. This last accomplishment became a running joke between us as I would always list it when talking about her and she would say, mom, no one cares, always accompanied by a very dramatic eye roll. But I maintain that it speaks to her popularity as she wasn’t the prettiest girl in the senior class but rather loved by so many.
Two sports stories about Mal. The first was when she was on Bruce Resnikoff’s basketball team in 6thgrade. The tallest on the team, Mal was usually in a position to shoot the ball but would often get fouled. She’d head to the free throw line and then almost always miss. But in the final playoff game, with the score tied, she went to take the buzzer shot, and was fouled one last time. She found herself back on the free throw line in the swim gym at Beverly High. The entire season was on the line and I remember looking at her and noticing across the court that on the other side was Jack Nicholson, who was waiting to watch his son in the next game. In that moment, I thought I was going to barf, so worried that Mal would carry the weight of the world on her shoulders if she missed. She picked up the ball, threw it straight into the hoop and secured the championship. Her competitive spirit, fierce determination and natural talent would serve her well for the rest of her short, sweet life.
The second story was when Mal was a sophomore in high school. It was the day before CIF volleyball, the start of the championship series and Mal got really sick. She wound up in the ER all night on an IV morphine drip. The next day she wanted to be released so she could support the team. Her doc said no so Mal checked out AMA, Against Medical Advice. She told me she wanted to suit up to sit with her team. I was worried she’d be too sad not to play but she insisted. Next thing I knew, she was her on the court warming up and then when the whistle blew to start the game she was in the starting line up. I freaked out but she was determined to play and was on fire that day. Her team advanced to the second round, the first time they’d done that in 14 years. Mal’s grit never ceased to amaze.
Hawaii was always Mal’s happy place. Our vacations were either to Maui or Oahu. About one particular trip she wrote this in her journal:
When I’m there I’m in my element. I’m in the sunshine, I’m happy, I sleep well, I’m not stressed, I exude confidence, I’m in the water, playing volleyball, surfing and doing these things WELL. There’s some combination of factors that makes me stand out in some way, and it makes it really easy for me to make friends and talk to people (because they start talking to me first, or smile at me and show that they’re receptive to me talking to them). By the end of each trip I am friendly with all the people who work at the rental place (who give out the surfboards, towels, waters, etc) and with people I meet on the beach. This trip I wasn’t with a friend and it was nice to not feel alone and still have plenty of people to talk to. It struck me as I was returning to California and realizing that a lot of times at Stanford I feel like an anonymous person; I have some very very close friends who are so loyal and who I love so much, but in terms of the class as a whole, I think I’m pretty unknown and don’t get out that much and never meet new people. So it’s nice for once to feel like people notice me and care that I’m there and know who I am, instead of me just being a random person going about my life independently while everyone else goes about their own lives separately.
Mal was always humble, always modest, never understanding how many loved and admired her or how many were inspired by her life.
Until we started the transplant process, life seemed manageable. But when it came time for Mal and me to move across the country, we were both scared of the unknown. The best part of this process was meeting the new medical team and finding the most amazing place to live. We set up a life there and many of our friends and family came to visit. We were happy and hopeful. I would sing to Mal, somewhere over the rainbow there are lungs. It was my version of prayer. When transplant finally happened, I change the lyrics to, somewhere over the rainbow there were lungs. And the dreams that we dared to dream really did come true. The rainbow became symbolic for all our hopes and dreams.
So many people cared about Mal and asked me for updates during the end. It was not possible to respond individually and so I chose Facebook as the way to share her story. All the time people took to comment was and continues to be such a gift, as I would share them with her. In the beginning, she would smile and we’d talk about the comments but as things progressed I would read them to her and she’d muster a little smile.
Now that she’s gone, in private moments when Mark, Micah and I are alone with our grief, we will look back at everyone’s pictures and posts and relive the magical moments of her life. These memories will be a blessing.
Near the end, Mal said, Mom if I die you’ll get your life back. She also said her biggest fear of death was what it would do to me. Even facing death, she was thinking of others. Mallory, you put up the most amazing fight and lived so much longer and so much better than anyone hoped after you were colonized by cepacia. You deserve to let your beautiful body and soul rest in peace. I love you and will hold you in my heart forever.
Mark Smith
Thank YOU, Jesse, for herding the cats.
And thank you to all of you for joining us here today to celebrate –
THE BRIEF WONDROUS LIFE OF MALLORY BEATRICE SMITH.
[Jesse:] Mallory always lived happy, and taught Diane and Mark to do likewise. And she did this with full awareness of her own mortality.
[Mark:] One afternoon, when she was 9 years old, Mallory refused to do her airway clearance treatment. Diane, usually so persuasive, couldn't make any headway with her. She called me at work and asked me to come home to see what I could do.
I sat down with Mallory at the kitchen table. Knowing it was not time for sugar-coating, I said, "Sweetheart, we don't insist that you to do your treatments just so you'll feel better. If you don't do them, you WILL get sick and die."
Mallory burst into tears, leapt up, ran into her room, and slammed the door … twice! I asked myself, "Have I been cruel, forcing upon a 9-year old the certain knowledge of her own death?"
Mallory didn't speak to me for three days after that, but she never missed another treatment. And she wrote her high school Health class term paper on improvements in the mean survival age of cystic fibrosis patients.
Forced to grow up early, she was always an old soul. Unlike many teenagers and twenty-somethings, she never acted like she was in a dress rehearsal. Life was opening night for Mallory.
She connected with me differently than with her mother. Diane was her Wingmom; I was more the academic consultant. Our connection was intellectual… humorous… literary and… sadly… medical.
Before she could read, I read aloud to her. On car trips, we listened to audiobooks. And when she started to read on her own, I tried to keep up with her voracious, eclectic reading appetite, until I couldn't anymore. We formed an informal two-person book club. We learned from our reading, and from each other.
When we read Slaughterhouse 5, by Kurt Vonnegut, Jr., we learned the lesson that Billy Pilgrim learned from the Tralfamadorians:
When a person dies, he only appears to die. He is still very much alive in the past, so it is silly for people to cry at his funeral. All moments, past, present and future, always have existed and always will exist. Tralfamadorians see the moments together in one glance, the way we see a mountain range. Seeing a dead person, a Tralfamadorian notes that the person is in bad condition in that particular moment, but that the same person is just fine in plenty of other moments. He shrugs what he has instead of shoulders and says, "So it goes."
Mallory had a highly developed sense of humor, and was unflaggingly kind. She always laughed at my jokes, no matter how many times she had heard them before. One night at the dinner table, Diane scolded me for forgetting to do something I had promised to do, saying "You're really in the doghouse." Looking up guiltily, I said, "Woof!" Mallory laughed so hard that milk sprayed out of her nostrils. Much more than my feeble attempt at humor, her spontaneous response had defused the tension.
I loved every minute I got to spend with Mallory. My grief today is dwarfed by the joy she gave me. I will be forever thankful for the 25 years I had with her … and to whom do I offer these thanks?
TO DIANE! Without her clearsighted sensitivity, her tenacious persistence and her unerring judgment, Mallory would not have lived into her teens.
Diane arranged playdates for Mallory, but only with girls whose mothers would dispense her enzyme pills. When Mallory asked if she could take piano lessons, Diane said, "No! We can't have you sitting around inside when its sunny outside. YOU should be outside, playing soccer," and thus began Mallory's impressive athletic career. Diane never missed a soccer, basketball or water polo game, a volleyball match, or a swim meet, at home or away.
When Mallory's health started to decline, Diane became her fiercest advocate. She did battle with stupid hospital policies, lazy nurses, non-compliant doctors, and murderous health insurance companies. When she and Mallory were on the way to the airport to go to Pittsburgh for Mallory's initial transplant evaluation, the hospital called and told them not to come, because the insurance coverage hadn't been approved. Diane did not even think about turning back. Working her phones and email from the car, the airport terminal and the airplane itself, with an assist from Don Fracchia, she persuaded the insurance company to reverse itself, and they confirmed … in writing … that UPMC was approved for the evaluation and for the transplant itself, and would be treated as an in-network provider.
So thank you, Diane, for myself and on behalf of everyone who loved Mallory, for your superhuman efforts that gave Mallory the most normal, the most wonderful, life she could have had in her circumstances. And thank you most of all for the last ten years we all had with her.
We will miss you, my darling Mallory. We will strive to live our lives so as to be worthy of your memory.
Rest in peace.
So it goes.
Jack Goodwin
I’d like to talk to you about titles.
As you probably know by now, I’m known simply as “The Boyfriend” in the Shader-Smith family … an illustrious title, but it was not always this way. It took me a while to earn it.
It’s safe to say that I am the newest member of the inner circle of the Mallory Smith fan club. I’ve worked hard to earn a place in that circle. Along the way, I’ve held many titles.
Diane reminded me of a story earlier this week of when Mallory and I were first courting. Mallory and Diane were on the phone together and Diane asked who was coming to visit Mallory in the hospital that day.
“Becca, Michelle, Ari, and… Somebody”, she said…Somebody. Awesome. Humble beginnings, clearly.
Soon after that I ranked up to the next level, attaining titles which contained the word “boy” in them, for whatever reason. “The new boy”. Or for short “the boy”. I even heard “boy of the moment”… Really guys? I know she’s popular, but, come on now.
Soon after that I peeked again, this time attaining the title of “Mule”… When Mallory travels, in addition to the already massive array of clothing and garments she insists on bringing, a theme shared by some un-named members of her family…
*look towards Shader-Smith family*
…she also had to bring with her enough medicine and portable treatment devices to last her a week. Let me be clear here, when I say “she had to bring all this stuff”, really itmeant that “I had to bring all of this stuff” for her… maybe some of you can relate to this. Maybe not.
I appreciated every moment of the process.
Finally, I made it to the title of “The Boyfriend”. I worked hard for that title. I’d like to keep it that way, if that’s alright withyou guys.
My parents are here tonight. I think they feel in love withMal from day one too. I’m so grateful for their support in the past and present, and that they’re here now.
I grew up an only child, with an amazing childhood. However, I never had a sibling to call Brother, or Sister.
That changed this week, because I gained a brother, in Micah. That is a title which I also hope you let me keep.
Diane and Mark; I know that you did not give birth to me, my parents are responsible for that one, but although I’ll neverbe your son, I always hope to be part of the family.
I’m honored to hold these titles. However, when it came to Mallory, I’ve known for some time now that the title of Boyfriend would never be enough.
Fiancé. Husband. Father.
These were my penultimate goals with Mallory.
We shared many of our dreams with each other, Mal and I. She knew that her body would likely not be able to bear children. Despite that, we both still wanted kids. I told her of the image, forever burned into my dreams, of Mal and I; one arm around each-other, the other arm around a child, one each, on our hips. She said that that would be lovely. She would have been the greatest Mother…
I’ve thought a lot about life this week - about the future Mal and I would have had - about the love we shared - the dreams that will no longer be realized together.
Many people have told me recently that I’m a good man… Incredible, extraordinary, even. I am not deserving of such titles… or at least, I am certain that I would not be, were it not for meeting Mallory. She’s the one that brought out the best in me; She’s the one, that brought out the best in the best in everyone.
In my eyes, my only extraordinary moment was just my extraordinary luck; to find someone as beautiful, as kind, as selfless, as perfect, as Mallory Beatrice Smith.
Diane once asked me, “When you first met Mallory, did you even know what you were getting into??”
No, God no.
“Given what I know now, would I do it all again?”
*Lengthy Pause*
The answer is yes, a thousand times, yes! Thank you all so much.
Michelle Wolff
It’s incredible to see the outpouring of support for the Smith Family and be here today with all of you to celebrate our dear friend, Mallory. Mal and I first met when we were five years old and played on the Purple Ponies soccer team. I remember Mallory got to play on two soccer teams that year, our purple team and a yellow team. I asked my mom why this was, and my mom told me that Mallory was very special and needed to do more exercise to keep healthy. I didn’t think much of it then, and years passed until we would be teammates again in high school. That was when our friendship blossomed, from playing volleyball together. We would spend hours hanging out both on and off of the court, eating copious amounts of food -- my favorite times were spent eating Diane’s salads and baked goods in the Smith kitchen. We also laughed at the silliest things and had fun doing both everything and nothing. We stayed in close contact after high school when we both went to college in Northern California, and our friendship since endured times of health and sickness, boyfriend ups and downs, more volleyball, an amazing trip to Hawaii, telling funny stories and having conversations about life in a few different hospitals, and a shared interest in making a difference for the CF community.
One of Mal’s qualities that never went unnoticed for me was that she cared so deeply for those around her. Mal valiantly fought her battle with CF, and with her family raised millions of dollars to support research for the rare bacteria she acquired. But Mal’s vision was bigger than raising money to just help herself. As she inched closer to needing a double lung transplant, she aspired to use her community to help raise money to fund organ rejection research, which would benefit the entire CF community. Bo and I wanted to help her in any way we could, and when the Smiths made the move to Pittsburgh after Mallory was finally listed for transplant, #Lunges4Lungs was born.
In the last three months, we’ve done a lot of lunges, spread awareness about CF and organ rejection, and raised over $84,000 to fund research. It breaks my heart that Mallory isn’t here today to lunge with us, laugh with us, and celebrate the profound impact she had on all of us. When I was with her in Pittsburgh last week, she was so happy to see so many of her friends visiting her, and as we talked about future plans to go back to Hawaii, hang out, eat, and do the same things we always did, she put her hand on her heart and crossed her fingers that it would happen soon.
In one of her blog posts, Mal wrote “Give back what we’ve taken by paying it forward, save a life, smile at a stranger, climb a mountain leaving nothing behind but footprints, inspire a child, take care of your body, bring happiness through laughter, plant a tree, and sometimes, just breath and exhale a little bit of calming energy to your environment. Give back in whatever small way you can, any time you can, because we are not small. No one of us can do everything, but all of us can do anything. Do it because we have survived, and that is a miracle. Do it because why wouldn’t you. Do it to justify your life.”
Mal, Bo and I promise to keep giving back through Lunges4Lungs, and in whatever ways we can. You were right, we are not small. This community here today of people that YOU brought together is not small. Thank you for being an amazing friend-- so intelligent, caring, giving, curious, and loving. Your spirit is with me everywhere I go, and I plan on always bringing a lil bit of Mal to everything I do.
Love Always,
Michelle
Betsy Streisand
Im so happy Diane asked me to say something about Mallory as a writer.
By 25 Mallory had…..written one book, was at work on another
one—or possibly two , made a film, a radio documentary posted a long
list of pieces on sites like Medium, kept years of journals and probably did much more than that.
I probably should have been getting writing advice form HER.
But here’s the thing…….
Mallory had something to say. She had a lot to say.
As I was looking back over her work—and it’s an intimidating task—
I was struck by something.
So much of the way we experience each other these days is through social media.
Smiling in pictures on Facebook and Instagram. Uploading funny videos of this and that.
And I was thinking of that now iconic picture of Mallory in her “Live
Happy” t-shirt, with her IV line running nonchalantly down her chest.
And all the other happy images I had seen of her over the years.
And my experiences with Mallory herself, when we would meet at the Montage to talk about a big writing project she was working on—on we would go over something on the phone. .
She was always, in the moment, present in the conversation.
Excited about what she was doing. Utterly delightful.
We didn’t talk about her being sick. We talked about writing, laughed about ridiculous things in the news. Compared funny notes on Diane.
And I realized yesterday, I had used all these pictures and experience to wrap myself in avery comforting lie---that Mallory actually lived a kind of double life:
The one that included CF. And the one in the pictures and the lunches that didn’t.
Of course, I know this is ridiculous. And Mallory was nothing if not transparent about her illness.
But the urge to compartmentalize and sugar coat things is powerful.
Which brings me to her writing.
Mallory was a lovely and ambitious writer
She was full of ideas. And the possibility that she could help bring about change.
Heal the planet in some small way through her words and her work. Protect her precious Hawaii.
But most of all, she was honest and brave and unrelenting when it came to telling her own story.
The one where there were good days and bad days, but they were all CF days.
As she put it in one of her posts: I am limited in what I can do, but not in what I say .
She left behind a chronicle of a real life. Of a girl trying to make sense of the world and her place in it.
Of a girl, who at age 11, learned that cepacia had taken up residence in her body, and changed the calculation of her future.
Or to paraphrase Mallory….. a girl…. who through a random encounter with an opportunistic pathogen….., had walked up to the devils vending machine, and was now expected to feel the heaviness of a mortality consciousness.
Who writes like that at 24?
Mallory understood that she understood something--- that few of us do. She didn’t choose it, but she stood defiant in front of that vending machine.
And told her story. She was disciplined about her writing. She was disciplined about her Happiness. She didn’t know the meaning of self-pity. She celebrated the good. She made no bones about the bad. She dared us all to learn the weaponized language of CF. She questioned the tragic bargain that would bring her the new lungs she needed.
Truth is under assault everyday in this country. Mallory left behind something honest and true. A compelling and heart-wrenching collection of pieces.
She said writing healed her in some ways. Her writing will surely heal others.
I had secretly hoped that I would be the person to produce the first radio piece Mallory made with her new lungs, when she could breathe deeply enough for the demands of audio. Sadly, we won’t get to make that piece.
But for all of those who knew her well, and with all due respect to EB White, I offer the last line of Charlotte’s Web.
“It is not often that someone comes along who is a true friend and a good writer. Mallory was both.”