Wednesday, May 13, 2015

Dorothy Gibbons

Dorothy Gibbons is the CEO and Co-Founder of The Rose, a medical non-profit that provides high quality breast healthcare to women regardless of their ability to pay. The first of its kind, Dorothy founded The Rose with Dr. Dixie Melillo in 1986. Each year, The Rose treats over 35,000 women, many of whom cannot afford to pay even $150 for a mammogram, let alone the thousands of dollars needed to pay for breast cancer treatment. Dorothy lives in Houston with her husband, Pat.

What’s your story, Dorothy?
I think if I were going to say something about myself, it would be that I am a great fan of women. I tell my employees that I am a feminist. It's not that I don't love men – I love my husband and my son, but I think if you're a feminist, you truly understand the value of a woman.

People ask me what it is about The Rose that keeps me here. Am I a survivor? Do I have a family member who is a survivor? And the answer is no to both. Breast cancer is, of course, the focus of The Rose and has been for thirty years, but it's the women that we are serving, and the stories of those women, that keep me so passionate about this organization.

I grew up in an environment where there was nothing but women around. My father left when I was young. We were very poor and living off relatives. Looking back, I see now what a strong woman my mother was, but as a child, you don't always see that. My mother died when I was twenty two years old from cervical cancer. The irony is that the Pap smear was out and available, but my mother didn’t have health insurance, and she didn’t know where to go even though she knew something was wrong. I remember her telling me that when she finally went to see a doctor, she had a douche that morning because the smell was so bad. Since I've been at The Rose, I’ve learned that smell was the smell of cancer, and that's a smell that you can't ever wash away.

Dr. Dixie Melillo,
Co-Founder and General Surgeon
of The Rose
Back in the 1970s, I was in Public Relations at Bayshore Medical Center. It was the tenth largest hospital in the city, but it had only one female physician on its active staff, Dr. Dixie Melillo. She was a surgeon too, which was even rarer. One of the things that Dixie was so passionate about was breast cancer, and she campaigned for the hospital to have a dedicated unit. Back then they were still doing mammograms with a standard x-ray unit, the kind used for broken arms, and insurance didn't cover screening mammograms, something which just doesn’t seem possible now.

So Dixie and I started going to talk to women in the area, at civic clubs and so on, to promote the Bayshore Breast Center which offered a dedicated mammogram unit.  We also went to the International Breast Cancer Conference in Miami and met Rose Kushner, who was there as a speaker.

Rose was a journalist for the Baltimore Sun and when she found a lump in her breast, her doctor told her that if they found anything during her biopsy operation, they would tell her husband and immediately do a mastectomy without waking her up. They didn't have a two-stage procedure; they didn’t wake the woman up and tell her she had breast cancer, they just went ahead and did her mastectomy. Imagine the psychological impact on those women who woke up without a breast, it was horrendous. Well, Rose was not going to let that happen to her, but it took her sixteen doctors before she would find someone who would wake her first.

I had already read Rose’s book which set out what you need to know about breast cancer for lay-people like you and me. At the conference, Dixie and I managed to have dinner with Rose and told her what we were doing to educate women in Houston, and we talked about how terrible it was to see these women who were coming in with late-stage cancer, and had no insurance to cover treatment. Rose looked at us and said, “Well, just quit your moaning, get off your ass, and go start yourselves a non-profit!”

After that, Rose would call me every Friday to ask what we had done about the non-profit, about calling our congressman, about getting Medicare to cover screening mammograms. Finally, we got our 501(c) non-profit status, and Dixie and I decided to call it The Rose as a living tribute to Rose Kushner.  We also wanted to have a name that women would feel welcomed them when they walked in the door.

The Rose’s Mobile Mammography 
Outreach Program operates 
a fleet of vans to reach thousands 
more women in outlying counties.
Now at The Rose, we can offer women a mammogram, ultrasound and biopsy, and we can also help them get access to treatment. We have Patient Navigators who guide them to a treatment program somewhere. Usually we can get them into Breast and Cervical Cancer Services, which is a state program, but the problem is that BCCS doesn't have a lot of money. It’s currently being reviewed in The Senate, which could mean that next year we get even less money. Sadly, because it’s all about women's health – and we all know the way our Texas legislature feels about women's health – we have a battle on our hands. I was in Austin four times last month, sharing our women’s stories and hoping that someone would listen. Thank goodness that State Representative Sarah Davis, herself a breast cancer survivor, is working in the House to protect BCCS, so perhaps we won’t have to face that next year.

But the BCCS is just one program. Last year we diagnosed 350 women, and 260 of those were uninsured. Almost 150 of those went through BCCS, around fifty went through Harris County, and we have a few that could get into Methodist Hospital. In our outlying counties, sometimes we just have to work with the Physicians Network, with doctors who have agreed to help take care of these women pro bono. They won’t get care for every health issue, but at least they will get chemotherapy or surgery.

Why do you do what you do?
When I was the PR person at the hospital, I was also the photographer, taking pictures of tumors and things like that. When I stood outside one of Dixie’s examination rooms, I knew what I was about to see was something that no one should ever see, and I could smell that smell that I had smelled on my mother. In the first year of The Rose, Dixie had something like thirteen women whose tumors had grown so big they had exploded through the skin, and were still getting bigger and bigger. I kept thinking, how could you live with something like this and not share it with your husband or family? It's got to be on your mind the whole time. How could these women have waited this long, because these women are not dumb. It's all about access to care, and they just don’t know there is anywhere they can go for help.

And let’s be clear exactly who the uninsured are. I know people think it’s only homeless people who live under the bridge or in the park, but no. The uninsured are people like my sister, a single mother who couldn’t take a 25c an hour raise at her job because it would have meant that her diabetic son would have lost his Medicaid coverage. It’s people like the substitute school teacher that only works one day a week or the mother who can’t possibly justify spending $150 on a mammogram when she’s not sure she can afford to feed her children that night. So let's get real clear about who the uninsured are. And now we coming up against the myth that everybody has insurance because of the Affordable Care Act. Wrong. Because Texas did not expand Medicaid, half of the women that we sponsored over the last three years still have nothing.

We also see a lot of young women who have invariably been misdiagnosed. They’re told it’s just a rash, or asked if they changed washing powder or deodorant, but actually it will be inflammatory breast cancer and it's very aggressive.
The Rose inspires all kinds of people to
raise funding to help women
with breast cancer
Every year we have to raise about $3 million to take care of nine thousand women who walk through these doors without insurance. We take care of women with insurance as well, and those insured women give us a base so that we can open our doors and take care of the uninsured. We still have to raise money but they offset some of the cost.

For every three insured women who come through our doors for a mammogram we can take care of one uninsured woman. We could do more free screenings, if one diagnostic exam was all that was needed, but by the time they come to us, many of these uninsured women are also certain to need ultrasound and biopsy too. I always tell my staff that until we don't see women with late stage cancer anymore, our job isn't done.

What is your Houston story?
I've been in Houston 64 of my almost 66 years, but you know, you can't claim to be a Texan if you're not! I was born in California, but my folks were from Texas and they moved back here. They had gone out there during the war, my father was older, so he didn't have to serve. He was working a lumber yard, then I came along and my sister came along, and we move back here to be close to my mother’s folks.

I married young, but you know, it takes two to make a marriage and two to break a marriage. I’d been without any kind of true love for a long, long time, but I was sure in my heart that love still existed. So after I’d been divorced a little while, I decided that I was going to find my beloved, and I did. I manifested the perfect man for me straight out of the universe.

First of all, I had to quit male bashing and putting men down. I also had to quit listening to my girlfriends and to all the women who were so tired of supporting men. Once I decided that I didn't want to live the rest of my life without loving someone and having them love me, I started off a ritual that I did every Friday. I started writing down scenarios about what it would be like to meet the perfect man for me. I opened my heart to love and to possibilities, and I made room in my life for another person.

Before long, I started chatting online with a man in Canada, in a non-profit grant application forum. We talked over about eighteen months, just in friendship, we never even exchanged a picture. Then he called to say that he had a friend in Houston and he was coming to see this friend over Memorial Day weekend, and would I like to meet up? You know, I fell in love with Pat that weekend, and a few weeks ago, we celebrated twelve years married.

Who or what has been the greatest influence on your life?
Books. As a kid, I was always able to imagine something different, and I think that came from reading so much. No matter how hard things were, I was always able to go find a book and be somewhere else. You know, I get teased about having a PhD in Self-Help because I've read so many of those books, but still, I know that it is those books that can move you forward. It is those books that you can hold onto it when people let you down. The books are always there. I also know that I had teachers that pushed me to read beyond where I thought I could, to challenge myself.

What advice would you give to someone new to the non-profit sector?
I love to tell Rose’s story, because if you have something that you feel strongly about, and if there's a Rose in your life, it can make all the difference in the world. You have to find someone who's going to push you and who’s going to believe in you. And you have to believe in yourself. When I look back I know there was a lot of times we wished for a sugar daddy, or for some wonderful institution to come in and just give us all the funding we needed to go on. But do you think I would have the stories I have now if we'd had that happen? We sure would not be the same organization.

I would also tell them that even though they run a non-profit, and it’s their life’s work, it must still be run as a business. If you have a year in deficit, you don't get grants because people don't want to take a chance on you, so you have to be a successful business to a certain level, though not too successful. It's like you're always walking this little tightrope.

How do you find, or seek to find, balance in your life?
I journal every morning, though I think this life/work balance is a bunch of hokey. I don't think you can find that as long as you're working. Yes, I would like to have more balance, but most of the time, when it's your passion, it doesn't feel like working. But when I do need a break, I go off to the country and work in my garden.

What does Houston mean to you?
I love Houston. We now have a little country place, but for years I couldn't imagine living anywhere else but here. I love concrete and steel. I even love the traffic. It's that excitement and bustle, and folks don't realize how convenient it is to travel around the world from here. I can be in and out in no time from the airport, but I’m always happy to come home.

I also love the diversity. I got to be part of the American Leadership Forum in Houston which is wonderful program. It changed my life, because as a senior leader with a few years behind her, it was easy to get caught up in always doing things the same way. But at ALF, you get thrown in with all these people who are business savvy, and you build relationships with them in a whole different way.  You don't even realize that you've lost that skill over the years, but it can be hard for us as adults to create new relationships with other adults after we get so settled in our lives. I would seriously encourage anyone to do it.

Where is your happy place in Houston?
It's really my own backyard – and I mean that literally, with a spade in my hand – because if you can’t find happiness in your own backyard, then where can you find it?

What's your favorite place to eat or drink?
There's a wonderful restaurant at this end of the world called Cullen’s and I love that place. When we go into town, I love Seasons 52 on Westheimer. I love Indian food too, and we like to go to little bitty places, but I'm also very lucky that my husband cooks. I think he would prefer to eat at home anytime.

What is your Houston secret?
I've been part of the Mary Magdalene community since 2005. This coming July at Christ Church Cathedral, we are having the Magdalene Festival, organized with Brigid’s Place. We are inviting artists to come and re-image Mary Magdalene.

Myths were created in the Middle Ages that Mary Magdalene was a prostitute, the penitent whore, but that was a total lie. So we are inviting artists to bring us a new Mary – Mary who was a teacher and Mary who was the apostle to the apostles. After all, Mary was probably the reason why Jesus’s community could function, and without Mary Magdalene we wouldn't have Easter. She was the sole eye-witness who watched him be put on the cross, taken down again, and who followed the body to the tomb and stayed there all night. Her name was the first name spoken by the resurrected Jesus.

But I don’t think that this sort of event could happen in many places except Houston. Believe me, there's a lot of people who think we shouldn’t even be talking like this, but that’s what is so wonderful. This is a city that will allow this idea to be discussed, that has a church that's open to hosting it, and that has a strong artistic community to draw on.  

If you could change one thing about Houston…
Billboards. Our buildings are so beautiful, but the billboards just get in the way.

Who would be your own Inspiring Houston Woman?
Marian Sparks is a sky-diver who does an annual event – Jump for The Rose – to raise funds for us. But she is so much more than that. Marian was one of our sponsored women. She was divorced and as a result, she didn't have health insurance anymore. She got a mammogram paid for through the American Cancer Society, and when it came back with a problem, she came here to have her ultrasound and biopsy, and we got her into treatment. Since then, she has done her skydiving event once a year and so far she's raised more than $85,000 for us. I even tandem-jumped with her one year!

Marian’s life has been so full of challenges, but still she has this event for us so that we can take care of others. She is a very special woman, but her circumstances are typical of the women we see at The Rose. A woman lets her career slide when she has children, but then loses her health insurance because of a divorce. It’s tragic. We just never know what is going to change our lives in the blink of an eye.

For more information on Dorothy’s work at The Rose, or to make a donation, visit the website here.

For more information on The Many Faces of Mary Magdalene art event, visit the Brigid's Place website here.

If you would like to join in the Jump for the Rose, visit the website here.

Wednesday, April 8, 2015

Chris Cander

Chris Cander’s novel, Whisper Hollow, has just been published by Other Press. Her other published work includes the award-winning novel 11 Stories, and her picture book, The Word Burglar. She co-wrote the screenplay for an animated feature film, Germs!, currently in pre-production, and she has written hundreds of articles for magazines and newspapers on health and fitness and parenting. She teaches creative writing to elementary school students as part of Writers in the Schools. A former fire-fighter, fitness competitor and model, Chris has a 2nd degree black belt in tae kwon do and is a certified women’s self-defense instructor. She lives in West University with her husband, Harris, and her children, Sasha and Josh.

What’s your story, Chris?
I’ve loved to write my whole life. It's always been a passion for me. I'm an introvert, and although I have become socially comfortable as an adult and have plenty of friends, growing up, I was always very comfortable being alone. I liked to read, I liked to think, I liked to write, and I liked to draw and take pictures. I also chose individual sports like swimming and martial arts, relishing the pursuit of personal challenges rather than competition against other people.

All my life I have I wanted to develop my strengths both literally and figuratively, and that has helped give me the impetus to do things that I had always wanted to do. One of these was to become a firefighter, which I did.

Chris Cander was a featured bodybuilder on an
episode of NBC's Baywatch
I'm pretty small to be a firefighter, and so I got interested in weightlifting and strength training. Around that time I met my husband, Harris, and we actually did much of our courtship working out together at the gym. He taught me the basics of strength training, and I started to see results really quickly. Given my nature to want to compete, not with others but with myself, I took it as a challenge to get into the kind of shape that would allow me to be competitive as a bodybuilder. I entered a fitness competition called the Galaxy, which was 50% athletic, and 50% swimwear, and I did well. In fact, through my involvement in the Galaxy, I was featured as a guest on an episode of Baywatch. It was so much fun, and I’ve just bought the DVD of that episode to show my kids.

After that, I continued to compete but I shifted format to bodybuilding. I'm very dense and I weigh a lot for my size, so I was always competing as a heavyweight but the upper end of heavyweight was limitless. I was up against these enormous, incredibly muscular women, and although I did as well as I could, I soon realized I could not – and didn’t want to – compete with that. But all that experience gave me a start in writing about fitness and nutrition. I became a contributing editor for Oxygen, Maximum Fitness and Clean Eating, and I wrote for many other magazines too.

For several years I combined my freelance writing with a job in software marketing. Though I published some essays in a local newspaper, I didn't really get into fiction until I was laid off from my last position during maternity leave. They reorganized while I was gone, and it turned out to be the best thing for me. I was forced to re-evaluate what I wanted to do, and so I decided to be at home full-time. I continued to write, but it was only when Josh was born that I realized I was ready to start trying longer form fiction, and I started my first novel when he was just a few months old.

That one was called One Last Time Forever, and though it got me my agent, Jane Gelfman of Gelfman Schneider Literary Agents, she wasn't able to sell it. The story is literary with some metaphysical twists, and at that time, editors weren’t sure how to position it, whether it was commercial, literary or something else that didn't have a clear shelf on the library or bookstore. Of course, I was disappointed, but I think of it now as the book through which I learned how to write books.

Once I had finished One Last Time Forever, I started to write Telling Ghost Stories, which eventually became Whisper Hollow, although my first draft was very different from the book that is coming out now.

Whisper Hollow, as it is now, follows the lives of three women through the first half of the last century in a coal mining town in West Virginia. It’s geographically remote, but culturally very diverse, full of immigrant families from Poland, Germany, Italy and other European countries. The people there have a hard life, literally scrabbling to carve out a life and a community for themselves and their families in this new country. I called the town Verra, based on the Latin root for truth, because the book is very much about the truths which these women and the people around them have, those truths that are revealed and those that they choose to bury. Those buried secrets drive so much of what happens to them, and between them, throughout the story.

My other novel, 11 Stories, came about in a very different way. Once my agent started trying to sell the latest redraft of Telling Ghost Stories and publishing houses were not sure, yet again, how it might fit into their lists, I got impatient. So I decided to write something completely commercial. What came out is 11 Stories. Apparently I'm not able to do something completely commercial! I wrote it pretty quickly, in only about eight months, and though it was a real labor of love, I simply fell in love with my characters, particularly Roscoe, the superintendent of the Chicago apartment block which has, of course, eleven stories. Once it was finished, I sent it to my agent. She liked it a lot, but since she was working hard on selling my other manuscript, she didn't want to try to sell 11 Stories at the same time. So she encouraged me to publish it on my own.

It wasn't an easy thing to do. I wanted to print it, not just publish it online, so some friends and I created our own publishing company. It took a tremendous amount of research to find out how to go about it. To be honest, I wanted to mask the fact that it was author-published, and in the end, I was really pleased with the appearance of quality and I've had an amazingly positive response.

11 Stories came out in 2013, and that year was also the year that my picture book, The Word Burglar came out. Since my daughter Sasha was tiny, she has wanted an original story from me every night. Wow, it's a lengthy process to put that kid to bed! When she was nine, she went to sleep-away camp for the first time, so I had the idea that every morning I would get up, make a pot of coffee, and give myself 45 minutes to write her an original story. The camp staff said that if I got it to them by 10am, they would print it out and put it on her bed for her to have at bedtime.

The Word Burglar was one of twenty-one stories that I wrote during those three weeks. I started posting them on Facebook and they were getting a following. This story was passed to Lucy Herring Chambers at Bright Sky Press by a friend, and Lucy decided to buy it. She also gave me the opportunity to have one of my very dearest friends, Katherine Tramonte, as the illustrator. Katherine is a very talented artist, and would send me sketches at five o'clock in the morning. It was so neat to watch her put the book together over the process of about a year.

In the meantime, Jane was working with the latest draft of what had now become Whisper Hollow and when she showed it to the editors at Other Press, they loved it and bought it. Even before publication, Whisper Hollow was getting some incredible interest. I am so blown away. The American Booksellers Association named it one of the Indie Next Picks for April out of the hundreds they could have chosen. And now I'm heading off on a multi-state book tour.

And looking to the future? Well, I’ve just sent my next novel manuscript to my agent, and I’m also working on my first movie. It’s an animated feature called Germs!, and I wrote the screenplay with some great friends. Sarah Blutt, David Eagleman and Tobey Forney. We worked on it every week for about four years. It placed well in a couple of screenplay competitions, and I am so excited that we have recently signed an attachment agreement with Cinesite and Comic Animations. So we have a producer and they are finishing putting together the funding and hiring a director. We’ve even put together a list of our dream cast voices. It’s just amazing to think that all this could actually happen. It's a really fun story for us to tell, and as a foursome, we have become even better friends over the years as a result of doing this.

Why do you do what you do?
Because I'm passionate about it. My son, Josh, asked me the other day, “Mom, if you weren't a writer what would you do?” and I said “I'd be a writer. There's nothing else that I would rather do.” I can legitimately say that I am doing exactly what I want to be doing and I passionately love the way I get to spend my days. I'm incredibly lucky to be able to say that, I know. I really am doing my favorite thing.

I also teach children to write through Writers in the Schools and, although I didn't think I was going to, I love teaching those kids. Before I began, I worried that I wouldn’t know how to break down what I had learned in a way that would make sense to someone else. How could I teach these kids anything meaningful about writing? But then I realized that if teaching the craft steps of writing is not my strength, then perhaps my strength lies in encouraging people to be fearless when they write. So I created a mantra, “I am a fearless writer!” We say that at the beginning of every writing session throughout the whole year. I hope, if nothing else, they'll remember that, so that when they are confronted by a blank page, they will be able to tap into that fearlessness. I have two classes of third graders at Presbyterian School, and I love it there. I have such great support from the administration and the teachers, so I'll keep going back as long as they’ll have me.

What is your Houston story?
I got here as fast as I could. My dad was a commercial airline pilot and he was stationed in Atlanta when I was born, but my parents moved here when I was three months old. I've been here almost since the beginning, so I consider myself native. My mom’s side of the family was from West Virginia, but my dad’s side was all Texas, so I have a lot of family here. My sister’s here, and my parents, and there's lots of cousins and extended family around.

My Texan roots are deep, but I do feel a strong link to West Virginia too because of my grandmother. She lived there for ninety years and that’s what drew me to set Whisper Hollow there. It is such a distinctive place in her history and my childhood, so I wanted to honor that. She lived in the northern part of the state and I set my fictional town in the southern part, somewhere in Raleigh County, where there is a long history of coal mining. Even though I had to move it geographically to be relevant to the occupation in the story, my sense of connection to the setting remains strong.

Who or what has been the greatest influence on your life?
This is such a difficult question because I'm almost 46 years old and I've had incredible influences all along the way, in family, friends, teachers and other writers, but I think it would have to be my children. I had to be a better version of myself to do justice to raising them. They have given me so much, they have taught me how to see the world with wonder again. When we, as adults, see something we automatically filter it through our own histories, without stopping and really trying to wonder about it. So I have loved looking at the world again through a child's eyes. What we writers do is observe and talk about our observations, so for me to be able to slow down and see things stripped of my prejudices and my knowledge and my experiences has been wonderful.

What advice would you give to a young person who wants to become a writer?
Be patient. Write as much as you can, and read even more than that – but also, have a life and create experiences that you can draw from. You must meet people, travel, and taste the world before writing convincingly about it all.

How do you find, or seek to find, balance in your life?
It's a discipline to be balanced and I do actually find it. I like order, so I have a natural system of dividing my day up into pieces There is a piece carved away for writing, when I can be alone and listen to my wind-chimes, and there is a piece that belongs to the kids, a great big piece. Then there's the piece where I can socialize with friends or I can go and work out, because health and fitness is still hugely important to me.

I had done a little martial arts training at college, so when Josh was old enough for pre-K and I suddenly had time to return to it, I did so with great passion. Now I'm a 2nd degree black belt in tae kwon do, and a certified women's tactical defense instructor. I teach self-defense classes to women and girls, showing them how to be aware of their surroundings, and how to make small changes to what they do to make sure they stay safe.

I don't feel guilty for making that time for myself, to stay fit, to create my art and hone my craft, or to take it to the world. I think so many women feel guilty about the time they take for themselves, but by finding that balance, they are modeling good behavior for their kids and for the community. People should celebrate creative endeavors and legitimize them. What my kids see me do, for my writing and for myself, will inform their future decisions. When they try to undertake something of their own, they will be able to say, “I'm going to do that because it's important to me, and it should be important to the people that care about me too.”

What does Houston mean to you?
It means home, it really does. Houston is such a welcoming place, our arts community is so vibrant, and there is so much that is available and accessible. You don't have to have a lot of money to enjoy some really amazing things here. I feel very comfortable here, and whenever I would go away, like when I studied overseas or when I went to live in Venezuela after college, the place I always wanted to get home to was here. Houston has always made me feel like I can breathe right.

Where is your happy place in Houston?
My home, if that's not a dorky answer. Specifically, my office in my home, where I'm surrounded by books. It's a portal to another world. I love being alone in my office knowing that my family is close by, but that I still have some quiet time. I know that sounds antisocial but it means such a lot to me.

What's your favorite place to eat or drink?
No question about it, Shiva in Rice Village – it’s absolutely amazing. My husband and I went there on our first dinner date, and we've done all our major celebrations there since. The food is wonderful, and it's very sentimental place for us.

What is your Houston secret?
I am as passionate about reading as I am about writing, and I absolutely love Inprint’s Margarett Root Brown Reading Series. Eight times a year, they bring in these incredible writers and we sit in the intimate setting of the Wortham Center to hear them read from their work, answer questions and sign their books. Why doesn't everyone in the whole city take advantage of this? Well, I suppose not everyone loves reading as much as me, but it's one of my favorite things to do, such a cool thing.

If you could change one thing about Houston…
I hate the humidity, it does terrible thing to my hair, and I can't stand the traffic, but really someone needs to figure out the public transportation. I wish there were more opportunities not to use your car, whether it was on a bike or on public transport. Actually I like to walk, but trying to do it in this city, I feel like an interloper. They don't make it easy for you to cross streets and people look at you funny if you aren't in your car.

Who would be your own Inspiring Houston Woman?

There are so many women who inspire me, but in particular, I have two. 

I have always had an incredibly close relationship with my sister, Sara Huffman. She's always been my first reader and my biggest champion. She is an incredibly talented jazz singer, with a couple of albums out, but she’s also a fifth grade teacher at Hunter’s Creek Elementary School. After only three years, they chose her as teacher of the year because she really does an amazing job with her kids.

My other inspiring woman is someone I admire professionally. Robin Reagler is the executive director of Writers in the Schools. She has done so much for literacy in and around Houston, and her work and commitment bring the love of words to children all across the city. I love her spirit. She's a poet and an advocate, but also she's a mother, a wife and a great friend. I'm grateful to know her and I'm grateful to have been working for her the last few years.

For more information about Chris and her new novel, Whisper Hollow, click here.

For more information about Writers in the Schools, click here.

For more information about Inprint’s Margarett Root Brown Reading Series, click here.

Friday, February 27, 2015

Kelly Lyons

Kelly Lyons is a sophomore at Seven Lakes High School in Katy and a keen dancer. At 11 years old, she was diagnosed with Crohn’s disease – an auto-immune disease which causes inflammation of the digestive tract. Since then, Kelly has been determined to face her health challenges head-on, and to use to her leadership skills and inspiring story to raise money for Crohn’s research and to extend awareness of the issues which make life so challenging for those suffering from this debilitating disease. She founded her Lucky 15 project in 2012 to raise funds for the Crohn’s and Colitis Foundation of America, and in 2014 she became CCFA’s Youth Ambassador. She also serves on the Children’s Patient Advisory Council of Memorial Hermann Hospital.

What’s your story, Kelly?
I'm 16 and a sophomore at Seven Lakes High School. I've always been really interested in school and I always enjoy learning about something different. I've always naturally fallen into a leadership role and though I knew that is what I wanted to do later in life, I wasn't sure how I would come across a leadership role that would really fit with what I wanted to do.

When I was in sixth grade, I was diagnosed with Crohn's disease, which is an autoimmune disease. How it affects you is a little different for everybody, depending on where the inflammation in your digestive tract occurs. I have it in my stomach and in my intestines, and it prevents me from absorbing nutrition. When I was diagnosed, I only weighed about 50 pounds and I wasn't eating anything because everything hurt when I was digesting it. That meant I wasn't gaining any weight. The doctor told me it was like having mosquito bites on your arm that you just keeping rubbing, except that it was happening inside me as food was trying to pass through. I started on three months of steroids to get me back to a place where I could absorb nutrition. I am now on one of the newer biologics, Remicade, which I've been on for four years now.

I found out great news in December, my Crohn’s is in remission. Unfortunately, I will need to keep up with treatments to keep it there, and those come at the expense of my immune system. At the start of the year, I spent two weeks with pneumonia because Remicade suppresses the immune system. This means that for about four weeks of every eight, I basically have no immunity to infection. I can still go to school but I try not to sit next to people that might be coming down with something, and we always stand up at the doctor’s office. Crohn’s was the first diagnosis that I had, but it was simply the beginning of a long list of other things to follow. I also have dysautonomia and intracranial hypertension. It's hard to point the finger at which condition causes what symptom, but definitely the intense fatigue makes it harder to get up at six and go to bed at ten, and have to do it all over again every day of the week. Unfortunately, this year, I have had to miss several months of school because I couldn’t stay healthy enough, but I am feeling stronger now and am catching up so that I can return in March.

Sixth grade was hard for me, and during seventh grade, I had to be homeschooled for almost the whole year. Because I wasn't able to attend much, school became more precious to me. I started to realize how precious so many things that I took for granted things are. That was when I decided that if I wanted to accept this new life, and also make it less intimidating on a day-to-day basis, I had to find a way to make a positive impact, to find something that would change my life for the better.

That summer, when we were visiting my grandmother in Denver, she let me spend time in her craft room which is full of jewelry-making equipment – beads and wire etc. By the end of the summer, my mom and I were making everything we could think of, cute homemade pieces that my friends and I might wear. That is how I started Lucky 15 as a way of raising funds and awareness at the same time.

At first, Lucky 15 was only going to be jewelry, but it has developed further since then. I was very lucky to be given support by Dr. Medrano, the principal at my middle school, Seven Lakes Junior High. When I went to see her, she immediately asked how the school could get involved. So I worked with my counselor and the principal to promote Lucky 15 within the school. We did pep rallies and spirit nights, we made T-shirts and I sold my jewelry at a holiday booth in December.

All the money that we’ve raised so far through Lucky 15 has gone to the Crohn's and Colitis Foundation of America, the CCFA, for medical research, educational and support programs, and for Camp Oasis. In our first year, we raised about $4,000 which was way past what I was ever expecting, and so far we have raised more than $15,000.

Why Lucky 15? Well, fifteen is my favorite number and I wear a necklace with a 15 on it.  It also has a turtle to represent us each taking one step at a time. Plus, I like green, so of course the color green had to be in it somehow too. I also like to ask people to think of fifteen things or people or places or times that they are thankful for. When you're struggling or having a hard time, it is helpful to be able to go back to that list. Focusing on the good things really helped me through the first couple of years after being diagnosed. I was grateful that the people who were there at the beginning really believed in the project. When they saw that it was really important to me, the project became special to them as well.

I was fortunate that my junior high and my high school are close. Some of my supporters and their parents helped me continue Lucky 15 at the high school too. It was so cool to watch it develop even further.

Why do you do what you do?
Lucky 15 has not just been about raising money to go towards finding a cure. It is also about educating people. As I started talking to people, I was surprised to hear a lot of, "I have a friend with Crohn's disease."  I have even met other kids who have been diagnosed who were in the same primary school I went to. I am so grateful that I could share my story because knowing that there was someone out there who had the same challenges as I did has allowed us to become friends and it's opened up doors too.

Kelly speaking at the CCFA Winter Ball 2014
photo: Priscilla Dickson
After my first year of running Lucky 15, I started making connections with the walk manager and the executive director of The Crohn's and Colitis Foundation of America in Houston.  They asked me to be the youth ambassador for their Winter Ball. That was such a cool experience. I had the opportunity to give a speech to a ballroom full of people. Luckily, because of the stage lighting, when you're up there you can only really see about twenty people so you feel like you're only talking to them. In fact, it was a lot easier than presenting some of my projects to my high school class. After my speech, I got to talk to some of the guests. Of course, I didn't really know who they are, but we had really interesting conversations and it was lovely to meet them. It was only after some guests had walked away that someone asked me if I had been nervous talking to them. It turns out that they were actually really important, one was the head of a major company! That evening was such an amazing experience and it really gave me the confidence to share my story because people wanted to listen. I spoke again at the Houston Walk for CCFA – they called me their Future Hero – and that speech was to about 1,000 people at Discovery Green. Those two events taught me that I love public speaking and made me more confident as a leader.

Looking to the future, I thought I might try to be an architect but since I have had the opportunity to be on the Patient Children's Advisory Council at Memorial Hermann Hospital, my eyes have been opened to some professions in the hospital. They interest me because I know how it feels on the other side of things as a patient. Of course, I don't know if I'm going to be healthy enough to go off to college right away. We've talked about it, and though I’m not sure yet what I want to do, I think it will be something where I can use my patient experiences because they give me insight about how to make the patient experience better for others. Lately I have come to understand that I am passionate about making things better for other hospital patients.

What is your Houston story, or your Greater Houston story, since you live in Katy?
I was born in Houston but moved to Covington in Louisiana as a baby. Then when I was about nine, my dad got a job here in Houston again and we moved back. Although I enjoyed my time in Louisiana, I always felt that Houston was much more like home. Although I live in Katy, I have had quite a lot of experience in Houston because I'm here all the time for doctors’ appointments and medical test and treatments. The CCFA office is here too. I have I connected with Houston as a place that has meaning to me and I am grateful to be here because the medical resources are tremendous..

Who or what has been the greatest influence on your life?
That would have to be my mother, Lisa. We were always close, but when I was homeschooled in seventh grade, she was my school and I spent all my time with her. We would drive to doctors’ appointments or we were at home with each other, so we really became very close and almost like one unit. We would even finish each other sentences. Watching her accept the changes that my diagnosis made to our lives has guided me toward my acceptance of it as well. She approaches everything with determination and perseverance, and maintains a desire for it to be done right. That has really inspired me to find something close to my heart and to go after it.

My mom also understands that I have to find balance. Even though I love my schoolwork and going to school, she knows I can't spend all my time on schoolwork, even if I've missed a day. She knows too that even though I love dance, I can't make dance my only priority. She has also taught me that I can't always be thinking about my health, only focusing on whether I'm sick or on the medications I have to take. She encourages me to find that balance for myself, and make the right choices, even though they are some of the hardest decisions to make.  I think that's one of the biggest gifts that she could have given me.

And how do you find, or seek to find, that balance in your life?
It is definitely a day-to-day thing. I have to ask, what will I feel glad to have accomplished at the end of the hour? Sometimes it's at the end of the week, but sometimes it really is just at the end of each hour. What am I going to be able to do in the next hour that is going to make me make me satisfied and happy with today?

What advice would you give to someone facing a diagnosis of Crohn’s disease?
First, I think that you really have to move in your own time. My GI nurse, Sara Hughes, really helped me when I was first diagnosed. She said, “Here's the website, here is CCFA, and here is a bunch of other resources. When you're ready to go and learn about other people and accept this, you can look into it further. You don't have to do it right now, just when you are ready.” That was one of the best things for me. She didn’t just tell me that I had this challenge and that I had to just move on with my life.  

Also, I would say that you have to find and keep that personal connection to whatever it is that you want to do. Make sure you nurture that passion. Don’t let go of everything that was important to you before, even if it doesn't quite fit into your life now. Evaluate what you want to do. You need to make your own decisions and you need to do it in your own time.

What does Houston mean to you?
I think it's so great to be in a place where there are people from all over, all with so many different goals and passions and interests. That is one of the reasons why I love my high school, which has close to 4,000 students. I love that everybody is just doing whatever they think is going to make them happy in the future. But at the same time, you cannot help but find people with common interests and goals.

Where is your happy place in Houston?
If it isn’t the dance studio, then it must be my high school, Seven Lakes. It surprises even me to say that, but I find that I am always striving to get back to school, especially after I've been home sick for a week, like now, when I’m home for weeks and weeks. I just want to be back there. Even though I end up with a lot of work, I am so glad to get back to school and into a community where I can just enjoy the ordinary stresses of being a sophomore. It will be good for me to get back to normality.

What is your favorite restaurant?
Outback Steakhouse! Having Crohn's disease, not everything sits quite right with me. I want to spend time with my friends and family, but it's not always easy to go out to eat with them. I've always managed to find something at Outback Steakhouse that works for me though. There are some pretty standard things I have to avoid, and that varies from person to person, but one of the universal things is spicy foods. For me personally, it is things with a lot of yeast like cinnamon rolls, or peppermint, which is rather strange. I also can't to drink a lot of milk products. It all depends on where the disease is in your body.

What is your Houston secret?
This must be the Adamson Ballet School in Katy. I've danced for 13 years now and dance has always been something very close to my heart. I mostly do ballet but I've also done tap and jazz, and other styles within jazz too, but ballet is usually the style I come back to and spend the most time and energy with. Dance is so controlled and so disciplined, you always know what to expect, even when you're doing something new. It's a very calculated form of exercise and it keeps me healthy in other ways. I know it keeps me from just wanting to sleep on those hard days.

Adamson Ballet School has become almost a second home to me. Everyone is so encouraging and supportive as I pursue dance even while having these medical challenges. Lately, I’ve had to accept that I cannot go to class regularly. When I’m sick, dancing can be hard, but having people there who don't look at me as if I'm crazy for trying is wonderful.

If you could change one thing about Houston…
I'd have to say the weather. The dysautonomia that I suffer is really impacted by the heat. The heat causes all the blood in my body to go down to my feet and it just sits there. I take medication that makes my body feels like it's cold in order to push the blood back up. So the heat is not my friend, and Texas is totally the wrong place to live! But then, the cold isn't very good for Crohn's disease either, so there are limitations to what I can do outside.

I am always grateful that I picked dance because it’s an indoor activity. I pleaded with my mom to take me to dance when I was three and I don't know if that was fate, but the the fact that I picked something which would not require me to run in the heat is perfect. I could not cope with that at all.

Who would be your own Inspiring Houston Woman?
When I was being diagnosed, I didn't really know any kids with Crohn’s disease, and all the adults that I had heard about were much older and I couldn't really relate to them. I was so fortunate, therefore, to get Jennifer Porter as my eighth grade counselor at Seven Lakes Junior High. When I explained my medical challenges to her and told her that school could really hard for me because I have Crohn's disease, she looked at me and said, “So do I.”

I was her office aid for a whole year, so I really got to know her on a personal level, and she also worked with me on creating Lucky 15. It was really good for me to see that even though she has Crohn’s disease, Ms Porter has a family and children,that she’s been to college and has a job that she really likes. Her mom connected with us too which helped my mom, because she could relate another mother whose daughter had grown up with Crohn's disease. To have a counselor that knows exactly what you're going through was just crazy, but fantastic.

For more information about Lucky 15, visit Kelly’s website.

For more information about the Crohn’s and Colitis Foundation of America in South Texas, visit the Foundation’s website.