Many people make a bucket list, a wish list of “musts” to see and do before they die. But how many are tucked away in a drawer, and left forgotten?
Meet Sandi Alvaro, a young West Virginian who has lived with cystic fibrosis (CF) her entire life and is out to “conquer the world, one day at a time.” Sandi, who will turn 29 in April, is also the author of the “Behind the Smile of a Cystic” blog — and the keeper of an ever-growing wish list that today is as much a tally of accomplishments as of wishes. It’s a list she began after watching the 2002 movie “A Walk to Remember,” and has been updating ever since.
In the movie, a teenager dying of leukemia (Jamie) tries to fulfill her bucket list with the help of her boyfriend (Landon). For Sandi, the film was a kind of epiphany, and she started her own teenage list against all odds. She had been diagnosed with CF just hours after being born, having failed to pass her first bowel movement test, one of the first signs of CF in newborns. The disease is characterized by thick, buildup of mucus in the lungs, pancreas and other organs, causing persistent lung infections and progressively limiting the ability to breathe. A genetic disease, CF was no stranger to Sandi’s family — it already had been diagnosed in three of her cousins.
Still, Sandi describes her childhood as relatively easy and enjoyable, not much different from that of any other child. “Growing up I was a typical kid, although I thought my friends were all a little strange [in] that they didn’t take medications and hours out of the day for breathing treatments. For a while, I literally thought they were the ones who were ‘different’ or sick. Through grade school and high school I was practically healthy. I was active in many school activities, dirt bike racing, cheerleading, theatre, pageants, and modeling. It was until my junior year in high school that my health started to decline,” Sandi said in an interview with Cystic Fibrosis News Today.
Even when her health started to deteriorate, she did not let it stop her from doing whatever she wanted, and her list blossomed and grew. Unlike Jamie, who had eight specific wishes to fulfill, Sandi’s list is varied and playful, designed with the goal of enjoying life with a smile, experiencing her dreams, and encouraging others.
“It was more of a to-do list than anything else. Once a doctor would discourage or say that I wouldn’t be able to do — insert dream here — I just wanted and went for it more and more. I have done more things in 28 years than most healthy people can say they’ve done in 80 years!,” she exclaimed.
“I have the milestones, which mean so much and they rank pretty high. Such as having my sweet 16 birthday party. Oh, hell, every birthday bow is a weeklong celebration when you are told forever you’d never make it to the age you are celebrating. Graduating HS [high school], going to college, turning 18, getting married, and the normal list of things that healthy people never pay much attention to.”
According to the National Institutes of Health (NIH), the average life span for people with CF is about 37 years.
Among those milestones are events like — as Sandi noted — graduating from high school and going to college, living in California, and getting married. Some are everyday life goals, others are truly extraordinary by any measure. “You then throw in the dreams that I started accumulating while I was growing up, like modeling for clothing companies, magazines, runways, and a living. All of those were and still are dreams I’m in the midst of accomplishing,” Sandi said with pride.
At age 23, she began working as a model in Los Angeles, and a year later modeled on a runway in Hollywood. She remembers dreaming of working for the Playboy Mansion since she was 17 — a dream she achieved when she was 24. “Nothing is better than walking by magazines or clothing in stores, knowing that you are an article or part of an advertisement for that company. Especially when I was always told I was too little and too short, and my medical problems would hold me back. I never let that stand in the way. To this day, my modeling is done wearing my oxygen and rocking CF like it is just a very unique accessory.”
Sandi is only 5-foot-2, carries a scar across her stomach from bowel obstructions and hernia repairs, and requires a feeding tube — all points not exactly matching the traditional standards of fashion. But Sandi takes any challenge as it comes and often finds in each a learning experience — such as modeling a rather revealing swimsuit. “[It] became something that was very controversial for me as I never wanted to show it, until I was cast in a swimsuit show, showing off my scar. And that helped to let me see that even that scar, as ugly as I thought it was, was actually very helpful in letting me know that beauty is everywhere. Scars and all!”
Letting go of her own negative feelings toward her body and the physical burdens of her disease helped to open her eyes to an entirely new world of beauty, she said, that of helping others. Among Sandi’s achievements is sponsoring a child’s “Make-a-Wish” trip to Hawaii, which she visited in a memorable trip at age 16, and helping other non-model-types with their own modeling careers.
“Once I stopped hiding my insecurities that came along with CF, it became that much easier to help others dealing with body imperfections who were wanting to model and not be afraid of what society thinks. I have always had a positive outlook on my life and my disease,” she said. “If it wasn’t for my personality and always smile attitude, I wouldn’t be here right now. Knowing that the worst thing anyone can tell you in life when trying to accomplish your dreams is ‘No,’ conquering my world one day at a time seemed to be so much easier after that.”
Her blog, “Behind the Smile of a Cystic,” was started largely to allow her to simply unburden, but became, in time, a great source of comfort to many others with CF. “My blog, to this day, still blows me away to be truthful. I started ‘Behind the Smile of A Cystic,’ just as an outlet to write and get things off of my chest. Little did I know that so many people would even care what I thought or had to say,” she said, adding that she tries to write about topics not usually addressed within the CF adult community.
CF used to be thought of as a childhood disease, but treatment advancements have allowed many to live — and live fully — well into adulthood. Sandi believes that an open and honest conversation about the disease and its impact on adults is still lacking, especially on topics concerning “sex, tattoos, the party scene, and so on.” That absence — for a woman who married in September 2011 — is a reason she lives her life as an open book, encouraging others to open up as well. “I personally don’t life to sugar coat anything about the disease. I feel that only hurts people in the long run, if you aren’t upfront and honest about things.”
Sandi is fully focused on raising awareness about CF, and sharing her story. She encourages everyone to exchange tips and tales of everyday life with CF, but also to smile through the disease, the only attitude that she feels truly helps people. “I feel that we shouldn’t allow the disease to take away our happiness, especially because the disease isn’t going anywhere anytime soon,” she said.
The model, wife, and tattoo enthusiast continues to document her journey and expand her bucket list. Her main goals now, she said, are to finish an autobiographical book based on the blog and get it published, and to become a mother and advocate for CF. And, like the film’s Jamie, Sandi’s wish list is now being fulfilled with the help of a special man, her husband, Tyson.
“I am always wanting to keep being a voice for CF and all rare diseases, volunteering, and helping give back as the much as I can,” she said. “I’m not as busy as I once was, when my world consisted of modeling everyday. Now that my dreams are closer to home … Lending a helping hand, CF education and awareness, and living the rest of my days with my husband by my side are still the best dreams and goals I have ahead of me.”
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