Tribute to Lourdes Garcia

From Robert Marion, MD

For the past 21 years, since the Einstein/Montefiore Spina Bifida Clinic moved from Einstein Hospital in the Bronx to Blythedale Children’s Hospital in Westchester I have proudly served as Lourdes’s spina bifida doctor. Although we were supposed to be only doctor and patient, ours has always been something much greater than the usual patientdoctor relationship: we have been friends and colleagues, teacher and student (and I mean that with both of us sometimes serving as teacher to the other), comforter to each other in times of sorrow and congratulator in times of triumph. Together, we have faced extraordinary challenges in Lourdes’s life as well as in my own.

And always, no matter how dire or serious times became, Lourdes somehow managed to face each day with a smile on her face and a happy and supportive word coming from her mouth. It was her smile and her optimistic attitude that were Lourdes’s most memorable features. At all times, sometimes against terrible odds, she always found the ability to smile. In fact, up until the death of her beloved Albert a couple of years ago, I can only remember her crying once. Since this episode is so emblematic of who Lourdes was, I’d like to recount it for you now.

It was a Friday morning in the early 1990s. Lourdes, in her role as patient liaison in the spina bifida clinic, was translating for a new patient who had recently come to us from Mexico. Sandra was a beautiful 18 year old young woman who seemed perfect in almost every way. Until very recently, she had been able to walk, climb stairs, run, all without need for assistance. However, because of a low sacral spina bifida, she suffered from the complete lack of sensation in her feet, a complication that made her susceptible to the development of infections and ulcers. Approximately a year earlier, Sandra had cut her foot and developed an infection, which, in Mexico, had not been adequately treated. The infection had spread to the bones of her foot. She had come to us in an attempt to find out if anything could be done to treat this problem.

X rays done at clinic that morning showed that all of the bones of Sandra’s foot had literally been eaten away by the chronic osteomyelitis, the official name of her infection. Looking at the X rays, Dr. Seimon, our orthopedic surgeon, realized that the only option was to amputate the leg below her knee and provide her with a prosthesis. Dr. Seimon entered the exam room, put the X rays on the light board, and explained the findings to Lourdes, who transmitted the information to Sandra in Spanish. At the end of his explanation, Dr. Seimon asked, “Sandra, what would you like us to do?” Without hesitation, Sandra replied, in Spanish, “I know you cannot fix my foot. The best thing would be to remove it and give me an artificial one.” Lourdes translated these words to Dr. Seimon, then wheeled herself out of the exam room, and disappeared into the clinic’s bathroom. Carolyn, one of the nurses, summoned me to find out what was going on.

I entered the bathroom to find Lourdes sobbing. When I asked what was wrong, all she could say was, “Why did it have to be Sandra? She’s so beautiful, so perfect. Why couldn’t it have been my foot? I don’t use it anyway. Why couldn’t they take mine and leave Sandra alone?”

This is how Lourdes was: she was always more concerned with the well-being of those around her than with herself. Through her terrible medical problems, through her bout with breast cancer and the multiple problems with her kidneys and bladder, her legs and her feet, her shunt and her skin breakdowns, Lourdes never asked, “Why me?” never asked for special help or special attention, never seemed cross or angry or depressed. She greeted each day and each interaction with her beautiful smile and, as I’ve already mentioned, with a kind word to everyone who crossed her path. It is this that will live on after her in our memories.

But that’s not all that will live on. As I already mentioned, Lourdes and I had a relationship that transcended the relationship most doctors have with their patients. Because we were friends and colleagues, I took advantage of her on many occasions, asking her to speak to trainees about what it was like to live in the Bronx in the late 20th and early 21st century with Spina Bifida. Through the years, Lourdes has spoken about her life to more than 200 pediatric residents at the Children’s Hospital at Montefiore, more than 500 medical students at the Albert Einstein College of Medicine, and more than 200 genetic counseling trainees from Sarah Lawrence College. She has indelibly etched herself into these people’s memories, becoming a permanent part of their understanding of exactly what it means to have spina bifida.

I know that this is the case, because wherever I go, at Montefiore or at Blythedale, at the medical school, or farther afield, when I’m invited to speak at other institution, former trainees always come up to me and ask how that woman with spina bifida is doing. Because she has become a lasting memory for all of these people, Lourdes will live on for many years to come. Whenever the term “spina bifida” is used, the picture of this smiling, laughing woman sitting in her wheelchair, talking about her life will always come to their minds. And there’s more. In the past two years, Lourdes has become obsessed with the plight faced by adults with spina bifida in our society. She came to understand, through her own personal experience, that once school ends at 18 or 21 years of age, and services dry up, people with spina bifida as well as those with other disabilities, essentially become marooned in their apartments; there are few services available, little chance for social interactions with anyone other than their immediate families, a paucity of opportunities to find a job, and no chance to further their education.

Although many people who find themselves in this situation would become depressed, bitter, and angry, Lourdes simply wasn’t wired to respond this way. Rather, she decided to organize a support group for adults with spina bifida. And so, with some help from Joanne Siegel and me at the Kennedy Center at Einstein, against virtually all odds, Lourdes pulled this off: in June 2008, the Bronx Adult Spina Bifida Support Group celebrated its first anniversary. Meeting monthly in the Kennedy Center to provide educational, service, and, most importantly, social outlets for our expanding group of adults, the group has been a tremendous success. Like all those people she helped train, this, too, will live on into the future, aiding those who Lourdes felt closest to, serving as a permanent legacy to Lourdes.

And even that’s not all. Through the many years that Lourdes, one of our founding members, has been a part of the Spina Bifida Clinic at Blythedale (I liked to tell people that she was our second oldest patient…. Lourdes always gave me hell about this…she was a little vain about her age!), Lourdes continually taught us, the staff of the Spina Bifida Clinic, about the condition. Yes, we had been to medical school or nursing school, or some other professional school, and yes, we were all very experienced in our different fields, but although we could “talk the talk” it was Lourdes who, through her presence and her personality, helped teach us how to “walk the walk.” For this, all of us, Linda Schendel, the nurse-coordinator of the clinic for these 21 years, James Goodrich, our neurosurgeon, Leonard Seimon, our orthopedic surgeon, Stanley Kogan, our urologist, Richard Borkow, our physiatrist, Lynn Nichols, our orthotist, and the rest of our staff, are forever in her debt.

Now that, after all she suffered in her life, Lourdes has finally found peace, we will have to go on without her. This will not be so easy: I have lost a loved patient, a valued colleague, and an old friend. Rest in peace, Lourdes.

From the Class of 2010

Lourdes Garcia was a teacher well-known to the Human Genetics program. Many students over the past ten years will remember their time with her. Our one-time lesson with her lasted no more than a half hour this past Halloween at Blythedale Children’s Memorial Hospital. Lourdes greeted us with a dynamic personality in a tan trench coat, aqua pants and bright smile as we sat in an assortment of costumes ranging from a witch to a pirate to a unicorn. Lourdes had spina bifida, and, at age 39 was the second oldest patient with spina bifida known to the Blythedale Spina Bifida Clinic. The condition had confined Lourdes to a wheelchair; she sat bravely and boldly in it. As part of our Introduction to Clinical Medicine class, Dr. Robert Marion was to introduce us to Lourdes to allow us to develop an idea of what people with this disease face and how this affected woman’s spirit persevered. When Lourdes was growing up, treatment for people with spina bifida was significantly limited. Since success was thought to be unlikely, it was recommended that children be placed in wheelchairs before having the chance to walk, thus stripping of them of their independence. By the time Lourdes wanted to walk, she was no longer able due to muscular atrophy. She faced many other challenges while growing up and was kept from school until the age of 11 because of her many ailments.

Before she arrived, Dr. Marion briefed us on her life and her work within his clinic. He told us how she was a patient advocate, once determined to be a social worker to help people like her. By the age of 39, she had faced and overcome stigmas, sexual assault, cancer, and a the death of her husband, while concurrently paving a path in understanding what people with spina bifida faced as they aged and how they could do it. The phrase “fighter” is used often in the medical field to encourage and yet, Lourdes didn’t need that term; she defined it.

As she entered our meeting, Dr. Marion got ready to do his “bit” with her, as he called it, with her finishing his words and poking fun at their relationship. “Hello!” she repeated several times until we were loud enough to answer back with “Hi Lourdes!”. He began with her age of 39 which she playfully scoffed at, as if he was being too forthcoming with her personal information. However, it was soon clear that the byplay wasn’t as it should be and this was not a good day for their usual “performance”. She was evidently affected by laryngitis and chose to sit away from us and Dr. Marion. It was to “prevent us from getting sick,” she said.

While Dr. Marion did most of the talking, Lourdes sat in a floppy position, somewhat lethargic and removed from the conversation. When asked for clarification by Dr. Marion, Lourdes appeared confused, frequently repeating her words. She moved around in her chair and in the room often trying to find a comfortable position. After many inquires of “are you ok?”, Dr. Marion was alarmed that this was not the usual demeanour of his positive patient that he had known for 21 years. Despite her persistence that she was not sick, Dr. Marion went to find her nurse for a second opinion leaving us alone with her. As he left, Lourdes turned, shhh’ing us, and said “I actually am sick” with a smile on her face. While chatting with her alone about Halloween, we sat there stunned and dismayed as to what was unfolding before us. It was evident that we were all moved and in awe of her life and now her courage to come talk to us even though she was not feeling well.

Dr. Marion and the nurse decided that Lourdes should go to the emergency room due to a possible shunt malfunction. Lourdes was in obvious distress. She was quire weary of another trip to the emergency room, as her last shunt malfunction had led to several complications, including perforations to her bowel. Dr. Marion had said that he had only seen Lourdes cry once before (see below story) and yet here she sat in front of us, on the verge of tears pleading not to go, saying “I’m scared”. She begrudgingly left, with our thankyou’s echoed as she exited and waved goodbye. Our gratitude was to be sent to her in flowers and in a card with messages that related to her incredible journey, her moving story, her strength and for a speedy recovery until we could visit again. (to my clas: sorry I read the card! I didn’t want to because I knew it would be too emotional and private. And it was). Unfortunately, despite news that she had been discharged with antibiotics, Lourdes passed away about a week after succumbing to an infection. In our dismay and with our card remaining, we donated what we had gathered to the Spina Bifida Association in her name. One of my classmates, Lisa, put it perfectly by saying: “She was just an amazing person with tremendous resilience. She is the type of person so many people strive to be... and that is so many people without disabilities”

Future classes may not get to hear her speak but hopefully this story will create a better picture of who she was. The only time Dr. Marion said he saw Lourdes cry was when she translated for a 16 year old girl who had spina bifida. The woman was able to walk and managed fairly well. However, she had no feeling at the bottom of her feet. One day, this woman unknowingly stepped on glass. It became infected, so severely that it obliterated the bones in her feet. When presented with the X-ray, the doctor asked the patient through Lourdes “What should we do?”. The patient acknowledged that she could see no bones in her foot and that it should be amputated. Lourdes quietly backed out of the room at the patient’s’ resignation to the situation and went to the ladies bathroom where Dr. Marion was summoned to. “Why are you crying Lourdes” he inquired to which she responded “Why did it have to be her? She’s 16, beautiful and with her life ahead of her. Why couldn’t it have been me? I don’t use my legs. I wish it was me”.

This is how she represented spina bifida; as a champion of her illness and as an advocate for others. From this half hour, my class will always remember this condition in this positive light, and we, as well as the classes from the past 10 years, will always remember her.