I HAVE A DREAM- Tales & Food Indulgences from Atlanta
I had a dream … that one day my CF friends and I could travel together, without the worries of CF or cross infection. I had a dream that together we could breathe freely, share a hotel room, eat to our hearts content, and laugh without coughing. That dream came true in Atlanta. Thanks to four transplants between us, we were free at last. We had overcome. In a very different way, I felt that the battle for our lives resonated with the battle for racial justice that raged in Atlanta and other Southern cities decades ago. Though CF was no comparison to the inequity and social pain of that era, the similarities were one thing: we all just wanted better lives.
Just two weeks after returning from Japan, Isa and I, and our film co-star, Anna Modlin, were scheduled to lecture at the annual CHEST conference of pulmonologists in Atlanta. This was a talk we had prepared intensely for months. We were invited to lecture together at the CHEST Conference by Dr. Upadhyah, a Stanford pulmonologist who had cared for Anna prior to her transplant. The biggest challenge was that Dr. U wanted us to share our story, show clips from the film and educate pulmonologists on the patient’s perspective in just 25 minutes. That was extremely limiting. Since I was determined not to fly to the other side of the country for a mere 25 minute talk alone, I had solicited the Georgia transplant and CF community months earlier to inquire about interest in showing our film or hearing us talk while we were there. Much to my surprise, we ended up landing four gigs in three days- typical Stenzel style.
The trip began with a fried food tolerance test. Directly from the hotel, we stopped at the famous Gladys Knight and Ron’s Chicken and Waffles restaurant, where we indulged in a Southern favorite- fried chicken and waffles (http://gladysandron.net/locations_atlanta.html). It was only 4:30pm, but already there was a long line outside the restaurant. Some say the line goes down the block at peak times. Because my gut is no longer functional nor normal, I settled for the non-fried food (I think it wasn’t fried but I couldn’t tell under the gravy) and enjoyed macaroni and cheese, chicken and rice and collard greens, followed by Georgia peach cobbler of course. It was decadent. I’m so grateful I still have my appetite. The restaurant was in an African American neighborhood and we were the ”minorities” in the restaurant. Since it was close to election day, I proudly wore my Obama/Martin Luther King t-shirt (bought in Memphis in 2008 during the last election) and got some compliments from fellow patrons. The meal was amazing- a great start to our trip to Atlanta.
That evening, as the sun went down, we visited the Dr. Martin Luther King National Memorial near downtown Atlanta. Dr. MLK has been a hero to me since childhood. Not only did he give Isa and me an extra holiday every January (we enjoyed Christmas, New Years, our birthday and then MLK’s birthday in consecutive weeks throughout our lives) but our life-influencing sixth grade teacher, Ms. Gaines, taught us about him and I was inspired to do some research projects about him in college. So MLK was a BIG deal to me. His words always give me goose bumps. I see him as a prophet sent by God, a man inspired by the truest of Christian values, and a martyr whose life was an example of man’s cruelty to man, conviction, perseverance through evil, and a symbol of hope and forwardness. So at his memorial, with the eternal flame, a reflecting pool that shined in the moonlight and his tomb next to Coretta’s, I was humbled and in awe. The memorial is a block long- and includes a museum, the famous Ebenezer Baptist Church (where he, his father and grandfather were preachers) another larger church across the street, a museum (housing his Nobel prize), a visitor center showing a film of his life and a summary exhibit of the Civil Rights movement, and a rose garden. Down the street are his childhood home and elementary school. We visited the museum and his church. Again, I had goose bumps inside Ebenezer Baptist church, in awe that I was standing in the same room where Dr. King was once. Where would our society be if he had not been here?
The joy of being in Atlanta was being with Isa and Anna Modlin (our dear friend of >20 years who is in the film who received a transplant in 2010) for several days. The challenge was all of us in the same hotel room, eating Southern food and sharing a bathroom! Believe me, between the Miralax, enzymes and my GI “issues” with chemo, we had a lot of laughs. I think I also ate more food (and enjoyed it!) than I had in previous months. On Sunday morning, Isa had breakfast with an elementary school friend, Clarissa, who lived in Atlanta. We had not seen Clarissa for over 30 years but somehow years ago Isa and she reconnected again through Facebook when Clarissa discovered our book. Since my sightseeing time in Atlanta was limited, Anna and I left Isa with Clarissa and returned to the MLK memorial in daytime to visit the museum. Inside, there was a chronological display of MLK’s life, the civil rights movement, and audio/visual records of how the south was in the 1960’s- a place filled with conflict, segregation, hate, sick racism and yet a coming together of the African American community and select faith groups, and a belief in equal rights amidst so much desperation. I thought of my husband, who was born in California in 1966 to a white mother and an African American father and how that was a crime in many states at that time. I just could not imagine a world where a person couldn’t enter certain stores, or couldn’t attend certain schools or even get their hair cut by a different raced barber just because of their skin color. I thought about the pain, the suffering and the hatred that is so hard to understand. If our generation finds the inequity of the 1960’s unbelievable, in 50 years will the new generation look back at the gay rights movement of today and also ponder in disbelief at what a big deal it was? I left emotional and very moved. One of my favorite moments was hearing MLK’s speech, Drum Major Instinct. The last 3 minutes of that speech really resonated with me:
“Every now and then I guess we all think realistically about that day when we will be victimized with what is life’s final common denominator—that something that we call death. We all think about it. And every now and then I think about my own death and I think about my own funeral. And I don’t think of it in a morbid sense. And every now and then I ask myself, “What is it that I would want said?” And I leave the word to you this morning. If any of you are around when I have to meet my day, I don’t want a long funeral. And if you get somebody to deliver the eulogy, tell them not to talk too long. And every now and then I wonder what I want them to say. Tell them not to mention that I have a Nobel Peace Prize—that isn’t important. Tell them not to mention that I have three or four hundred other awards—that’s not important. Tell them not to mention where I went to school. I’d like somebody to mention that day that Martin Luther King, Jr., tried to give his life serving others. I’d like for somebody to say that day that Martin Luther King, Jr., tried to love somebody. I want you to say that day that I tried to be right on the war question. I want you to be able to say that day that I did try to feed the hungry. And I want you to be able to say that day that I did try in my life to clothe those who were naked. I want you to say on that day that I did try in my life to visit those who were in prison. I want you to say that I tried to love and serve humanity. Yes, if you want to say that I was a drum major, say that I was a drum major for justice. Say that I was a drum major for peace. I was a drum major for righteousness. And all of the other shallow things will not matter. I won’t have any money to leave behind. I won’t have the fine and luxurious things of life to leave behind. But I just want to leave a committed life behind. And that’s all I want to say. If I can help somebody as I pass along, If I can cheer somebody with a word or song, If I can show somebody he’s traveling wrong, Then my living will not be in vain. If I can do my duty as a Christian ought, If I can bring salvation to a world once wrought, If I can spread the message as the master taught, Then my living will not be in vain. Yes, Jesus, I want to be on your right or your left side, not for any selfish reason. I want to be on your right or your left side, not in terms of some political kingdom or ambition. But I just want to be there in love and in justice and in truth and in commitment to others, so that we can make of this old world a new world.” – Drum Major Instinct – MLK 1968.
Wow-what a gift he was to the world.
Mid-day, we headed back to the hotel to pick up Isa and head to Emory Children’s Hospital where our film was being shown at 2pm. The Reaching Out Foundation, a non-profit organization that helps local CF families with financial assistance (led by CF/lung transplant recipient Susan Burroughs), and Dr. Nael, a CF researcher at Emory, had agreed to host the film and had helped publicize the event. Although the attendance was a little low, the film still made an impact to the 20 or so people who were there. We truly appreciated those from the transplant community and CF community who joined us for this event. And I was especially happy to see my former genetic counselor co-worker at the event. I hadn’t seen Pat in over 10 years and it was a wonderful reunion.
After the film, Anna, Isa and I headed to another recommended southern cuisine restaurant, Sweet Georgia’s Juke Joint (www.sweetgeorgiasjukejoint.com). It was a blues club and restaurant so while we devoured our favorite foods, we listened to blues in the heart of downtown Atlanta. I ordered the shrimp and crawfish e’toufee and the others ordered fried catfish. Of course we started the meal with fried green tomatoes, and ended the meal with pecan pie and peach cobbler. I think between us, we must have emptied half a bottle of pancreatic enzymes that night. I love Southern food and said a prayer that night that my gut would cooperate.
In the morning, we had a two hour window of free time so we headed to the Centers for Disease Control (CDC) for a tour. As huge disease and epidemiology buffs (and being the nerds we are), Isa and I were so ecstatic to be at the center of the nation’s health and disease database and research center. Wow, the CDC!!?? As we entered the driveway, we could see the barricades and check points, the barbed wires and security towers. The public was only allowed to go to one small area which enclosed the museum and gift shop. Our rental car was searched, and we had to check in to receive badges to enter. This was the place where they took bioterrorism very seriously! We joined a tour and learned about the history, role and the importance of the CDC in investigating, researching and eliminating diseases that have affected our country and others for centuries such as malaria, polio, small pox, tuberculosis, the plague, various parasites/worms (there was a great exhibit on clean water efforts to reduce disease), and more recently, AIDS, Ebola, West Nile, anthrax, meningitis, SARS, H1N1, and more. During the tour I was fascinated by the iron lung, disgusted by the Ginny worm, and awed by the film about anthrax and how they identified that in the letters that were mailed throughout the USA in 2002. Each exhibit was so educational-there were original news clips and photos of the first AIDS cases, maps of the current “outbreaks,” and tools used by “disease detectives” to find the source of an infectious disease, isolate it, and ultimately treat it. The CDC, a federal agency, was originally established in the early 1900’s in Atlanta, because the government was working on malaria abatement programs in the South at the time. Years later, Coca Cola company, based in Atlanta, sold a large plot of land to the feds for $10 for the purposes of making a permanent home for the CDC in Atlanta. Today, it employs over 17,000 employees worldwide. Many areas of the CDC are off limits to the public, most employees and only the most authorized individuals are allowed to enter under extreme bio-hazard conditions. We also saw a short film about the biggest current public health problem- the increase of chronic diseases like diabetes, heart disease and cancer. We learned of grass roots efforts, led by the CDC to educate the public about healthy lifestyles and diets to minimize the risk of these silent killers. I left with the conviction that I will NEVER travel to most of Africa, and that much of our germ paranoia IS justified. I also left with a greater appreciation our government’s role in public health, and the dedication of so many public health professionals who work so hard to understand, treat and prevent infectious and chronic diseases on a large scale. As CF and transplant patients, we are indirect clients of the CDC. We are biological specimens that have probably been tied to some research done at the CDC at one point – be it on CF’s germs like MRSA, cepacia or MAC, or on the large range of opportunistic infections that can affect us as immunosuppressed patients any time, any place. Needless to say, we washed our hands before we left.
We headed directly to Piedmont Hospital transplant Institute, where we were scheduled to speak for a lunchtime meeting for the hospital’s transplant professionals. Isa and I gave a 40 minute presentation sharing our story and the miracle of lung transplants. Piedmont Hospital is well known for performing many liver, kidney and heart transplants (they just celebrated their 500th liver transplant) but they are not a lung transplant center, so it was a topic that was a bit different from what they were used to. There were over 60 people in attendance, including nurses, doctors, social workers, chaplains, transplant coordinators and administrative staff. We were able to show clips of our film. Overall the event was well received. Our host was a familiar face from Team Georgia from the US Transplant Games. We joked how we could barely recognize each other outside of our casual team sports uniforms.
Although lunch was served, we avoided it, as it was a buffet that was ransacked by dozens of healthcare providers and our germ paranoia, accentuated from the visit to the CDC, got the best of us. Instead, after the talk, thanks to GPS and YELP, we headed to a quaint neighborhood of Virginia Highlands where we ate at DBA BBQ (www.dbabarbecue.com). Isa and Anna Modlin enjoyed sweet tea, pulled pork sandwiches, macaroni and cheese & coleslaw, and I enjoyed honey corn bread, BBQ chicken sandwich and creamed corn. It was more Southern food heaven. It was a gorgeous day, with blue skies, slight breezes and a temperature in the 70’s. We sat on a balcony overlooking some trees and quaint shops. With great friends, good conversation and 2 out of four lectures done, life couldn’t be better.
After our lunch, we headed back to Emory for our evening lecture. We were invited to speak at the monthly meeting for the Atlanta chapter of the International Transplant Nurses Society (ITNS). This group, which has chapters nationwide, is made up of dedicated transplant nurses- the warriors who witness it all and take care of donor families, donors, and recipients before and after transplant and organ donation. I was so honored to meet so many of them- some had been in the field for over 17 years. ITNS was a donor to our film so we were so honored to be able to thank this group. Isa and I gave a PowerPoint lecture catered to nurses and then showed several clips of the film. Of course we end our talk with Q&A with Anna Modlin joining and many accolades to the nurses for their role in keeping patients like us alive. Afterwards, we were greeted by many; some shared it was the best talk they ever heard and I blushed. One nurse said she was feeling burned out and our lecture was just the perfect message she needed to hear to get back on track. How humbling.
It was past 8:30pm and we were tired. But alas, it was dinnertime and our stomachs called for more Southern food. “I’m not sure I can stomach more fried food,” said Anna Modlin. “Let’s try something simpler. “ I agreed. The previous night’s very spicy crawfish e’ttoufee had shocked my intestines and I was in serious need of some relief. We had a hard time finding something open around 9pm until we stumbled across a diner that had been in business since 1923. Open 24 hours. Perfect- just what we needed. We vowed to g o “easy” as the three days of SERIOUS eating was taxing all of our systems. We joked that people with CF are good at 2 things for sure- eating and shitting. And we were at it again. I ordered the waffles with pecans (topped with only 4 fried chicken tenders), plus a side of fried okra. I know I was trying to go easy, but I LOVE fried okra and it’s rare to find in Cali. To my surprise, the “side” was actually about 2 cups worth! OMG! Isa went all out and had a pork chop the size of a glove, collard greens, grits and more fried okra. Needless to say, we hobbled out of there around 10:30pm, moaned our way back to the hotel, fought for first dibs to the bathroom, and finally dozed off after a very long day.
The next morning, we spent some quality time perfecting our speech for CHEST’s conference. This was the main reason we were in Atlanta so we had to focus. We practiced trying to articulate, dividing the slides so that each of us had equal speaking time, and making sure the timing was right for fitting in all of our slides and 2 film clips in 25 minutes. We headed towards Atlanta’s Olympic Park and found our way in a giant convention center where pulmonary health care professionals, pharmaceutical and biotech company professionals swarmed from room to room listening to symposia, workshops, hands-on tutorials about the lungs. The Expo itself, which was like a trade show for biotech/pharma, showed dozens of booths featuring the latest in ventilator and sleep apnea technology, bronchodilator and inhaled medication advancements and more. The best and the brightest in the world’s leaders in helping us breathe were there. I had to guess there were about 3000 in attendance.
Our talk was scheduled at 11:45 am for the Women’s Health Network of the American Academy of Chest Physician’s luncheon. There were about 200 in the audience. Several other speeches were made, some awards given and then we were the keynote speakers. Fortunately everything went very well. We had a bit of a challenge with the AV- we had to switch computers every time we wanted to show a film clip midway through our lecture; but we made it happen, despite the 3 of us fumbling about on the stage. We were three chicks on prednisone, speaking a mile a minute to get everything in in 25 minutes (I think it was more like 30). The audience was engaged and grateful for our message- a well thought out description of our experience, with messages encouraging pulmonologists to work in CF, ways that they can enhance their interactions with patients, and the patient empowerment that arises after years of dealing with chronic lung disease. According to Dr. Uphadhyah, it was “perfect.” Afterwards, we met doctors from India, Switzerland and Okinawa and many complimented about our quick talk. We were pleased.
After a quick farewell, we rushed out of the convention center and began a 20 minute speed walk to the car. Our talk was over around 1pm, and our flight back to San Francisco was at 2:55pm. This scheduling was not well communicated so Isa accidently booked these flight times. To say the least, I think we all burned off the fried okra from the night before with our sweaty, panting hustle back to the car. Once there, Isa drove, I dealt with the GPS (darn thing!) and Anna packed her freebies from the Expo & changed clothes. Despite a few cuss words as the GPS took us towards the wrong airport, we arrived, dropped off the car, and shuffled through the most chaotic security line we have ever seen. Still sweating, we dodged people for an entire airport wing to finally get to our gate as boarding was well underway. Super woman Isa ran ahead; Anna and I panted behind but made it in the nick of time – we didn’t even have time to buy food or fill our waters. NONE of us would have been able to make that flight without new lungs. As we boarded, all wearing identical masks, a woman in first class made an audible comment to her friend that perhaps it wasn’t safe to be on the plane (thinking that we were sick). We replied that no, we were not sick, but we were all wearing masks since we received lung transplants and had to protect ourselves inside germy planes. She jumped in her seat with gleeful enthusiasm and congratulated us, with accolades of “you’re so amazing! OMG!” She then asked us what row we were in, and offered to buy us beers.
As the plane took off and the adrenaline of our rush subsided, Isa and Anna Modlin dozed off. Atlanta was amazing but we booked four events in 3 days. Wow… that was insane. This was one of the first trips I have taken where I had no time to buy a single souvenir. Anna Modlin survived a weekend with the Stenzels. About 30 minutes into the flight, the flight attendant arrived with cold beers, stating that the woman in first class bought them for us. I have NEVER drank alcohol during a flight, but after the craziness of the past 3 days, we all toasted our Bud Lights and said a prayer of thanks for the amazing weekend- bonding as sisterly friends (without the worries of cross infection), amazing food, many lectures to educate and inspire others, the ability to celebrate being in Dr. Martin Luther King’s hometown (and see his impact), and lastly, topped off with the kindness of strangers touched by the miracle of lung transplantation. Life is good.
As I reflect, all of this was possible because of the work of Dr. King and others like him, who opened the hearts and minds of progressive America to diversity, acceptance, equal opportunity and justice. Though we were not African Americans, we were indirect beneficiaries of the civil rights movement. As women and people with disabilities / chronic illnesses, it was his work and the work of others who allowed us to attend schools, get jobs, and attain such a splendid life despite our lung disease. Yes, our society is not perfect, but we have come a way since the 1960’s.
I got home and got on the scale- I gained 2 pounds!
Thank you for reading this very long blog. I hope you too can experience Atlanta some day.