How Does She Do It?

Wendy Carlyle: Giving the Gift of Life

What would you do if you were asked to save a stranger’s life?

For Wendy Carlyle, her answer was unwavering. “It was never a question for me. Never.”

Though first she had to get beyond the skepticism with which she took the call from Miami in 2008. The person on the other end told Wendy she was a possible match for a bone marrow transplant which could save the life of a man dying of leukemia. “And I was thinking it was a prank phone call, because I had NO recollection of registering. I finally said, I need to see something in writing because I don’t know who you guys are!”

Arriving at her doorstep the very next day, the paperwork refreshed her memory of an event six to seven years earlier. A friend at her synagogue had egged Wendy into giving a swab from her cheek as part of a bone marrow donor registery sponsored by the Gift of Life Foundation.

A lot had happened to Wendy in those intervening years – it’s no wonder she forgot that day. Like having two more babies and her husband Reuven’s announcement in February that he planned to run for the state legislature that November.

Although Reuven had been involved in politics from a young age, it was new turf to Wendy. She soon learned how all-consuming a campaign could be.

“Reuven’s the kind of guy – when he decides something it’s an all or nothing gig. It was a very tough election and he did it all, all the time. He put 100% of his time and effort and everything into the campaign.” Fundraising, sign waving, attending events, and ringing as many doors as possible each night before the sun set – and during the Seattle summer the sun can set as late as 10:00.

Wendy Carlyle, husband Reuven, and their 4 kids in a campaign photo

Their nanny took care of the kids when Dr. Wendy Carlyle was at Virginia Mason Hospital, where she works part-time as an anesthesiologist. “But the nanny really just worked the hours that I worked. So when I came home she left, and it was home from work and Reuven not there and it was all the carpools, all the dinners, all the activities…” Wendy counts off the items with her head turning, as it must have been doing at high speed back then.

“And on top of that, I would have to show up at all these campaign events. When I could I went doorbelling, and on the days I came home from work at a reasonable hour, I’d stand at the corner and wave signs, sometimes with my one year-old.

“That was a hard year,” she says, and then emphasizes, “a super hard year”.

It was into this level of family mayhem that Wendy took that call.

Her skepticism now put to rest, she agreed to take the first step – the initial blood work. Wendy pumped out a few vials to send to the lab to test if her markers aligned with the recipient’s, and learned shortly thereafter that the tubes had broken in transport and she’d need to do it again.

“And then months go by, really. And finally, I get a call back and they say, ‘you’re a perfect match. A 5 out of 5 match for man with leukemia and would I be willing to donate’?

“So my only response was, could it wait? I’m not sure how urgent this is, but if I could wait until after Election Day it would be easier.”

Reuven Carlyle got elected to the Washington State Legislature on Tuesday November 4, 2008, and the following Monday, Wendy checked into the University of Washington Medical Center to donate her bone marrow for a total stranger.  (below: Wendy and 2 year old Nava t Mount Rainier)

But before the actual donation – and squeezed into the busy campaign season – Wendy was fully evaluated, both physically and psychologically. There were many hours spent, for an EKG, chest x-rays, blood work and a total physical exam. All to make sure there was no hidden medical condition that could put her at risk. The psychological exam was done to determine that there was no coercion, no money being passed under the table. “They close the doors and say look, you know you really don’t have to.    

“People I talked to would say they would never do it, but for me, there was never, never, an inkling of hesitation. When I got the phone call that said I was an exact match I was just overwhelmed with the opportunity to potentially save somebody’s life.”

Sitting with Wendy two years later at our outdoor café table, I see the emotion of that moment in her eyes. It has the look of someone overwhelmed by the generosity of a tribute or a gift. It is the emotion of gratitude mixed with humility. The feeling of someone deeply touched who doesn’t feel herself worthy of the recognition.

“It was an amazing experience, an amazing opportunity to save someone’s life. I mean, I’ve given birth, I’ve given life. I have four children, but it really is nothing like this. And it’s all anonymous, which makes it even more special,” says Wendy, pausing a moment to compose herself. “Because you’re doing it not out of personal love for somebody or family obligation, like if your brother needs a kidney and there’s all that emotional stuff that comes with that. But I have no idea of who this person is.”

Wendy knew only that the recipient was a 46 year-old man with leukemia who weighed twice as much as she did. Given that he was so large, they had to take the absolute maximum amount of bone marrow from her that would be safe. Even that was just the minimal amount that would be acceptable to him.

Bone marrow donation can be done in one of two ways, either through a surgical procedure where needles withdraw liquid marrow from the back of the pelvic bone; or through a non-surgical procedure where the donor receives daily injections of a drug that increases the number of blood forming cells in the bloodstream which are then separated out through a machine like that which is used for dialysis.

Wendy didn’t want to go through the medication, so she chose to have the marrow extracted surgically.

“The day of the donation was so exciting, it was just so exciting.” The nanny took the kids to school while Reuven and Wendy went to the hospital where they were met by a representative from Gift of Life, who had flown out from Florida to be with them.

With her share of experience in the operating room, Dr. Wendy Carlyle wasn’t too concerned about the procedure itself. “But it was a big blood loss because they had to take so much. I was severely anemic and dehydrated. My only concern in the recovery room -- I was just weeping because I was so hoping that it would work for this person. I knew I’d be ok. I did what I could and now it was out of my hands and I was so overwhelmed with emotion for him.”

Wendy knows her recipient survived his first year, at which point communication cuts off unless he chooses to initiate contact. She would like to know how he’s doing but she’s fine with giving him the choice to contact her or not.

The year after her donation Gift of Life sent Wendy two tickets to their annual fundraising event in New York. “I took my oldest daughter and it was an AMAZING evening. They introduced three sets of donors and recipients who met on stage for the first time. There are tissues on every table because there is not a dry eye in the place. Everybody made such a big deal about the donors, but the way I look at it, for the donors, the procedure is an inconvenience, but it’s not life threatening. I think the real heroes are the recipients who have made it through this amazing medical procedure.”

Gift of Life is a Jewish bone marrow registry, recognizing that ethnic groups have a higher chance of having bone marrow similarities. A visit to their web site introduces one to a Rabbi who reminds us that “this is an intrinsic Jewish value to share the gift of life.” (For another amazingly inspirational story about the importance of ethnic bone marrow registries, listen to or read this story on NPR about a Nigerian Olympic hopeful and graduate of Yale Law School who started a registry to help people of African descent after he was diagnosed with leukemia).

This year, Wendy’s chance to connect with her Jewish heritage was a spiritual rather than physical one. Her eldest daughter, Adi, had her Bat Mitzvah and in celebration, Wendy and Reuven took her and her sister Liat to Israel.

“The girls really got the connection between the Jewish history and the Jewish present and the fight for the Jewish future.”

 

Adi, Liat and Wendy in Jerusalem

As for the Bat Mitzvah? “It was really the first moment when it felt like I was passing the baton. It’s not any more about me and my generation – it’s the moment where you see that this is the future. I don’t think I expected that.”

It’s a theme that underscores our entire interview – Dr. Wendy Carlyle, passing on her love, nurturance, spirituality, life, to those she knows and loves, and even to those she doesn’t.

- Janet Pelz

Wendy Carlyle’s Not-So-Secrets for How She Does It?

• I think I keep everything in perspective. I really don’t get rattled or worked up about a whole lot of things. Part of that comes from the job that I have where I see real emergencies, people with real illnesses and real crises, so it’s hard to get worked up about my situation.

• If you’re a little late, so what? Everyone’s going to eat, no one’s starving here, they’ll all get to sleep. I just try to not sweat the small stuff. And I have good kids, who are pretty independent, and they’re all used to being in a very busy household.

• I exercise almost everyday. I run, I ride my bike to work. I take aerobics classes at the health club. I see friends when I can.

• Wendy places tremendous value in her community of friends. After the bone marrow donation, “I was blown away by my friends who dropped off meals, came and helped with the kids – the support from my community was amazing. Really, it takes a village. I could not have done it without that support for sure.”

Whom Does Wendy want me to interview next?

• In my own circle of friends, they’re all amazing, but you should interview Carol Wiley Cassella, who just published the novel Oxygen (click the Amazon ad on this page to order it and to support the blog!) She has two sets of twins that were born 15 months apart; she’s double-Boarded in internal medicine and anesthesiology. I don’t consider myself amazing. I’m just a regular person, but she’s amazing.

What books has Wendy read recently?

• Girl with the Dragon Tattoo trilogy by Stieg Larsson. “Fabulous!” (click the Amazon ad on this page to order it and to support the blog!)

How Do You Indulge the Occasional Need for Self-Pity?

My last interview, Joyce Israel, talked about what she did when in need of a ‘pity party’.  You know what she means, those moments when the weight you carry threatens to send you deep into a box of kleenex  or a family size bag of Fritos with sour cream dip.  Joyce turns to the tear-jerker movie rental, preferring to cry at someone else’s woes rather than her own.

How about you?  Do you have a tried and true outlet when you feel like the ASPCA has brought all its dogs to your front lawn to poop?  Any advice you care to share?

 

On the more optimistic side, look for my next post coming soon on a woman’s path to save a stranger’s life.  Would you do what she did?

- Janet Pelz

Joyce Israel: Finding Unconditional Love for her Special Needs Son

Jonah wasn’t her first. Seven years earlier, Joyce Israel had Noah, a bright eyed intense baby boy. “He popped out of the womb and I was in love. I never knew you could love that intensely.” Those early years with Noah were magical “He had to learn everything, and do everything ahead of schedule. He was very, very bright. He was all right there.”

Noah Israel today

Living in Australia for her husband Rick’s work, Joyce became pregnant again. Everything went smoothly, with none of the first baby anxieties Joyce had with Noah. “I had never been so fit, it was all fabulous. And then I had a baby and everything seemed fine, but Jonah never really responded to me the way Noah did.”

All children are different, the doctor reassured her. Don’t expect another Noah. “So, I thought, all right, he’s different – fine. And then three months down the road he starts having miniature seizures.

“At this point I realize something’s wrong – I mean, I’m a fairly astute person,” says Joyce rolling her eyes upward.

She and I are satisfying our mutual need for rich coffee after our morning workouts, Joyce looking much better put together than I. Her time in the locker room produced a matching white bag and trench coat while I barely managed a clean pair of yoga pants. We both arrived at the café a couple minutes before our appointment time. “I’m ridiculously punctual,” says Joyce, as if an apology is needed.

She saw the pediatrician immediately who said Jonah needed to see the neurologist. It was the Friday before Joyce’s 41^st birthday. “So the doctor called to make an appointment and he hangs up and said, sorry, no one can see you for another month, and I said, yeah right. I get on the phone right there in his office and I say, someone is going to see me, MONDAY.”

Joyce and Rick spent an anxious weekend waiting with their three month-old for that Monday appointment. After preliminary tests, the neurologist insisted that Jonah stay overnight in the hospital. “They’re doing all sorts of tests on my little boy – I have to hold him while they do this.” Joyce holds her arms as if they still have her baby within them. “They’re monitoring his seizure activity, they had to do a CAT scan on his brain. And that’s when we get the results. Neurologists – they so lack in the personality department. He tells us our kid has a condition called lissencephaly. And he tells us Jonah has a particularly severe form -- he has agyria. – which means he has no gyri.”

Lissencephaly is caused by an arrest in development of the fetal brain during early pregnancy. The cerebral cortex, the top layer of the brain controlling higher thought processes, does not develop the normal indentations or valleys in the cortex, and gyri, the ridges or convolutions seen on the surface of the cortex. Instead, the cortex in a person with lissencephaly is thickened and smooth with disorganized neurons that have not migrated to their proper places.

“And then he tells us outright, Jonah’s got two, maybe four years to live. He’ll be vegetative. He won’t eat orally. He might not ever smile. And they want us to spend another night in the hospital and we’re like, ‘why’? We’ll just take our kid home and let him die,” Joyce voice trails off, remembering the feeling of futility.

While they were still in the hospital, in a room along with several other kids, Joyce remembers seeing another mother tend to her child. “She was so beautifully dressed. She had a 13 or 14 year-old boy, and the nurse was about to start a tube feeding on him and she said, ‘no no no, I’ll do that.’ She was so efficient, and I thought to myself, that’s me! That’s my picture right there! I sure hope I have the nice clothes too! It was like watching an out of body experience. I couldn’t fathom any of this.

“Sadly enough I spent the first year and a half of my kid’s life waiting for him to die. Maybe wishing for him to die,” Joyce admits. “I don’t know, maybe I wanted to get on with my life if he wasn’t going to stick around.

“I couldn’t get invested emotionally. It’s really sad for a mother not to bond with her child, and I so regret those years when I see who Jonah is to me now.”

Amazingly, today Jonah Israel is almost ten years old, smiling, eyes twinkling from his wheelchair. He’s beaten the odds, outlived the predications. And Joyce has learned to love him unconditionally, counting each day a blessing while remaining realistic about how many days may remain.

She attributes her transformation in large measure to the people she brought into her family circle to help. Topping the list is Jonah’s inspirational pre-school teacher at the Boyer Children’s Clinic in Seattle, Mary Ellen Buchanan – “now that’s who you should interview next”, Joyce tells me, underscoring this with a fork pointed in my direction.

“I remember, we walked into her classroom and she held up these two objects in front of Jonah and she said brightly, ‘Jonah, which of these do you like, do you like the blue (pointing to one hand) or the green (pointing to the other)?’ And I thought, lady, what, are you on drugs? My kid is a vegetable, what are you doing? And do you know, within six months, Jonah was turning his head, making a decision between the blue and the green? She gave me hope. This woman changed my attitude about my child in a huge way. I came to understand that there was somebody home. And gradually, gradually, I learned how to love him.”

It was Mary Ellen who encouraged Joyce to have Jonah tested and fitted for glasses. “Glasses? I don’t know how they can figure out a prescription (since Jonah can’t read an eye chart), but they do, and all of a sudden he’s sleeping less during the day, he’s focused more – I can see that his world is opening up.”

Joyce believes so strongly in the Boyer Children’s Clinic that she sat on their Board for five years.

“So, at this point, I’m starting to see that I have a little person here. I’m starting to see – I know how to keep this child alive.” Recognizing that Jonah is not processing food well, Joyce starts him on a high fiber, low-fat diet. He can’t eat solid food so she grinds his breakfasts of bran cereal, lunches of salad with avocado, and dinners of tofu and vegetables. He’s no longer constipated, which means his body can absorb his medications. She has him working with one of their long-time helpers doing yoga, which she describes as miraculous, helping Jonah avoid hip surgery, a common occurrence among children with lissencephaly.

Monday through Friday he’s at Lowell Elementary, a Seattle public school that houses the city’s Low Incident Special Education program, teaching children in specialized, self-contained special ed classes. In addition to his physical, occupational and speech therapy, he spends time in a general education classroom that pairs with Jonah’s class for activities each week.

“For me, school for Jonah is primarily social. I mean, he’s never going to read, he’s never going to write, whether or not he’ll ever use one of those fancy- schmancy boards to communicate I don’t know. I’ve never had lofty goals for my kid other than that he should be happy. And being around other children makes him INCREDIBLY happy.”

And this year, school has brought what all parents hope for their children – a friend. “This is the first time this has ever happened. This little girl put a note in his lunch box asking if they could have a play date together! So I’ve taken them to movies, the Science Center, the Aquarium. When we go to the museums, she’s busy looking at the exhibits and he’s looking at her. It’s all about her. I mean, you even mention Dylan’s name to Jonah and you can see him light up. She even sits with him at lunch at school. This little girl loves Jonah. It’s a miracle. And they’re perfect for each other because she can’t stop talking and he can’t talk at all!”

Jonah Israel enjoying an outing with friend, Dylan

Joyce describes a time when she set Jonah up in his room so Dylan could read to him. “When I returned, she had him cuddled in her arms. It was too sweet,” she says the emotion of that moment still very strong.

Jonah has many others in his life who adore him. There’s Rick, whose love for Jonah is returned tenfold. “He still loves his dad more. Which pisses off me, and all the other girls who help care for Jonah. Here I am, diapering him, getting him to go to the bathroom, grinding his food, giving him his meds, everything he needs. Dad comes home, and boom, that’s it. Whatever,” she says waving it all away with a smile on her face.

“Look, I’m mostly function. He expects me to feed him. I’m the only one who can help him have a bowel movement in the toilet. He knows I’ll be the one to come in the middle of the night when he calls out.”

For almost 10 years now Joyce has been getting up with Jonah one, maybe three times a night. “I’m like an Alzheimer’s patient during the day because my memory function is impaired due to lack of sleep.” Despite this, she doesn’t nap. “I don’t want to. I want to live my life. Instead, I’ve got this,” she says, lifting the coffee cup for a long sip.

And then there are Joyce’s parents, who “are incredible with Jonah – they just love him so much.”

That wasn’t necessarily a sure thing. “I never would have suspected my mom would be ok with this kind of situation because, you know, in her mind, people who aren’t perfect get exterminated.”

Both of Joyce’s parents are Holocaust survivors, her mother having been in Auschwitz for more than a year. “Somehow she managed to survive that. She is a very, very strong woman.” Joyce acknowledges some of that strength got passed down to her.

When I asked how much of a presence her mother’s concentration camp memories played in Joyce’s childhood, she answers that rather than being overt, it was “more like the Seinfeld, yada, yada, yada, like, ‘When I was young I got into a fight with an SS officer and yada yada yada and now I can’t see out of my left eye.’ And six years later you find out she was pistol whipped.”

Despite her horrific past, Joyce’s mother helped set a standard for being a mother to Jonah. “She is the epitome of unconditional love. There is nobody like this in the universe, who would lay down herself gladly for anything.

“To need to learn to love your own child -- I just felt like such a terrible mom. Now I think he’s fantastic – he’s such a sweet little guy, so cheerful. It’s impossible not to be happy when you’re around him because, oh my God!, he just so enjoys life. You can wallow in your pity party as much as you want, but this kid, he’s not. It forces you to look at things differently.”

That’s not to say that it isn’t hard or that every day is a happy one. The pain gets less and less as the years go on “since I’ve learned to love Jonah for who he is. Certainly initially, yeah. I’d hear a curly haired boy calling his dad and I’d break down in the grocery store. There are things you want for your child – I have very simple wants now. If I could just hear my kid say, ‘mom’, I would be happy. But I don’t expect to, and you know what, that’s ok.

- Janet Pelz

Rick and Joyce Israel

Joyce’s not-so secrets for How She Does It:

• Red wine, coffee, yoga, new shoes, and date night every Saturday.
• And if I’m having a pity party, a sad movie really helps. It helps to have someone else to feel sad for.
• I hire help. I outsource! If I had been the only caregiver for Jonah all these years he would be vegetative.
• I am incredibly fortunate. There seems to be a big correlation between disability and poverty and I don’t have to worry about that. I can get extra help, I can buy a necessary piece of equipment. And here’s the irony – I’ve never been a person who needed a whole lot of money. It never appealed to me, but thank God that Rick has done so well in life because Jonah will always be taken care of, get medical care – that’s one big worry we can put to rest that many families can’t.
• Rick adores this child and is devoted to him – thank God our marriage is solid. I’ve been really blessed to have married such a wonderful man. The divorce rate for people with kids with disabilities is up around 75 – 80%! You add a big stresser like that, add the economic stress, if parents don’t agree – we don’t have any of that.
• Noah is a wonderful presence in her life, bright, personable, witty “he’s constantly cracking me up with his one-liners!”
• I’m pretty damn lucky. I feel so blessed.

What book has Joyce read recently?

• In the Time of Butterflies, by Julia Alvarez

Whom does Joyce want me to interview next?

• Mary Ellen Buchanan of the Boyer Children’s Clinic