There’s a girl I know named Marisa…
So I'm the brother, Scott... the orneriest of the bunch, the one that broke Aimee's arm once in adolescence cause she has a hard time (apparently) roller skating whilst being shoved by me at Mach 3 around the rink screaming for her life. Ehhhh, it happens, right? Right??!!
Anyhow... Aimee recently participated/contributed to something I'm a part of, and suggested I write a guest post to let others know about it.
I wouldn't normally do this... but it's for a reason and purpose that's very close to my heart. So I'm going to tell you a story... a long, but very real story.
My very best friend's name is Marisa. We met back in the mid ‘90s when my family moved to Scottsdale, and we have been friends ever since. Marisa turned 31 about 6 months ago. When she was born (and old enough to understand), she was told she shouldn't live past her teens – because at birth, she was diagnosed with Cystic Fibrosis.
Cystic Fibrosis is a genetic, degenerative, and presently un-curable disease. In short, due to a faulty gene, sodium and chloride don't pass through cells like they should. The result of which causes thick mucus to build up in the lungs and nutrient malabsorption in the intestinal tract. In 1930, life expectancy of babies with CF was up to one year. By the 1950s, it reached 5 years. By the 1980s, it was nearly 20 years, and today, it's almost double that.
Marisa told me once that growing up, she always had a number in the back of her mind... the number was what she believed to be the age of her last birthday. As the years went on and advancements in treatments and drugs were pushed to market, she kept surpassing that number in her head. To be honest, I know she still has a number and how that weighs on her conscience, I can't even fathom.
(Watch for Marisa in this CF video.)
Life with CF consists of 3-4 times daily hour-long nebulized/inhaled breathing treatments and 3-4 hour-long chest percussion treatments, all in an effort to thin and expel the mucus - enabling you to breathe, function, and carry on with your life. You also can't eat anything (unless you want it to come out in less than 30 minutes) without ingesting 7-10 enzymes per meal so that your body is forced to absorb the nutrients from food, because of how CF affects the intestinal tract.
Anyhow... Marisa wasn't alone in her struggle... her younger sister of 5 years also had CF. It affected her sister differently and more severely than it does Marisa... her sister's lungs weren't as strong and at age 17 (in 2000), she underwent a living donor, double-lung transplant. You and I have two lungs comprised of two lobes each (upper and lower). Wellesley and her mom & dad were thankfully genetic matches for transplantation. So, all three of them went under the knife at the same time and her mom & dad each had one lobe removed…those two little adult lobes then filled their daughter’s chest. The surgery went well, the recovery was long, but Wellesley enjoyed a quality of life she hadn't seen... ever. In February of 2001, Wellesley sadly lost her battle with the disease due to complications at the age of 18 – a few months before her high school graduation.
Until recently, anyone who meets Marisa wouldn't have a clue she has Cystic Fibrosis. You might notice she coughs from time-to-time (well, all the time) but other than that, Marisa doesn't acknowledge to herself that she's sick. She's just Marisa. If you hung out with her for a full day you'd get to see how intense her lifestyle is just to keep breathing. You'd notice how she hides her chest percussion machine and makes it look like an end table, and puts her nebulizer in away out of sight. If you watched closely, you'd see her sneak pill after pill after pill into her mouth. If you hung around long enough, you'd learn she's admitted into the hospital two to three times a year for 4-6 weeks for what she calls a "tune-up".
Again, let me remind you... Marisa doesn't see herself as sick... this is just her life and she functions juuuuuuust fine. She has graduated college, held jobs, travels, has fun, loves her family and friends and on and on. She's just like you and me, but was dealt a very different hand at birth.
Outside the hospital, Marisa lives by herself – is very independent, and qualified for "disability" a few years ago which provides some passive income. She’s also found a few awesome families for whom she can nanny that accommodate her (unexpected, unplanned and frequent) health challenges and hospital admits. Combined, she's been able to afford her independence in personal expenses... just like you and me and anyone else because Marisa isn't sick... she's entitled to everything that everyone else is and she's been determined to do just that.
A few years back, I learned (through some brow beating it out of her) that based on affordability, she was choosing NOT to fill some of her prescriptions. Her family and I intervened, changed all the mailing addresses on her medical claims and bills and health plan to someone else's address, and made her swear not to open another bill. We made her promise to fill all her prescriptions when she needed to, and not to worry about how much they were. We've been able to keep the out-of-pocket medical expenses just under $10,000 per year. Yes, yes, that's a fortune… but behind the scenes her extended family and I make it work, and on the surface we tell Marisa the medical fund we established through Bank of America is flush with cash. (In truth it's never flush with cash but we make it work, and it removes the burden of Marisa choosing groceries over medicine or visa versa).
So here's the latest update... Marisa was recently discharged from the hospital after having spent the longest stay of her life (to date) there. Eight weeks to be exact. She wasn't getting any better inside the hospital... (that has NEVER happened). She kept on getting lung infections, she was coughing up blood... she didn't feel well, she was scared.
Marisa doesn't let a lot of people into her thoughts (she's tough as nails, and has to be), but a couple weeks ago, we both had a little meltdown. I was staying with her in the hospital and ultimately came up with the idea to write down some very specific questions because we knew the pulmonologist was making rounds the next day. He came by and took about an hour to humor us... through tears and silent moments, Marisa got to talk to those who have become her "friends" (not doctors) over the last three decades of hospital stays, about what's really up. The army of doctors and nurses who treat CFers down in Tucson, AZ, know that this routine isn't new to their patients – it's their life. So, you don't often get bedside consults… because at the end of the day, it is what it is. They do their best to monitor your health and get your lungs feeling better, then push you out the door to see how long you can stay on the outside until you have to come back in.
The bottom line is that Marisa is having to face the fact that her health has turned a corner. She doesn’t know if it will find its way back... doesn’t know if there will be gradual or rapid hills that go down or up… doesn’t know if she can turn BACK around and get on the same path she was on before she was admitted. But this last time, she wasn't pushed out of the hospital with the same vigor as she had been previously.
This time, however, she was pushed out with a fancy new machine – an oxygen compressor that she now uses overnight so that her blood’s oxygen saturation doesn't fall below a certain level. She also was put on a recently FDA-approved inhaled medicine that actually has its own machine to administer it and ions to charge it up, and weird stuff I don't even understand. The manufacturer had to comp it for the first month, because it's insanely expensive (like $5,000/month), but it's showing promise. The Cystic Fibrosis Foundation and drug manufacturer’s goodwill program are trying to get it into the lungs of lots of CF patients so they can prove it works, get it subsidized by grants and private funding, and distributed widely, so the cost comes down. If you’re keeping track, that's 4 more treatments a day on top of the others to add to her routine.
If you've made it this far, congratulations!
If you read no further, I hope you leave with the impression of understanding that lots of people have lots of struggles in their lives. Some are consequences of previous decisions, some are merely circumstance… but it's how you deal with them that counts. It's how you react to them that defines your character.
For anyone who knows Marisa personally, you'd know that she's far from perfect herself, but that every single day she chooses to live one more. She chooses by taking her medicine, by trying to work out her lungs and increase their capacity, by trying to cough up that mucus, by making sure she's taking the correct dose of enzymes, by making a cough sound like a sneeze in public so people around her don't think she has a cold, by letting this funny machine shake her for an hour – 3-4 times a day to loosen up what's in her lungs. She does all this with the best attitude one could ask for, each and every day. So what I take and have learned from knowing her, in reflecting on my own life and mortality, is that I've learned not to sweat the small stuff, to enjoy each day, foster productive friendships and relationships and get rid of negative ones, and to have fun for crying out loud! That's what I hope you get from all this.
If you want to know how you can make a difference in Marisa's life, please keep reading!
Marisa's parents had an idea that they got Marisa to tentatively agree to prior to her leaving the hospital. The proposal involved her changing her focus of balancing work/life/expenses to something more singular. They told her that her new full-time job should be her health, that she should commit to that every morning, noon, and night, and try to have fun along the way. Marisa's stepmom hatched up the idea that if just 50 people contributed a mere $20 per month, that $1,000 per month eliminates her from HAVING to work to maintain her modest lifestyle, enjoyment of life, and independence. I'm the super geek behind the scenes that threw up a website that explains the program and I encourage you to take a look. We got Marisa to agree to this because we said people are constantly asking her parents if there's "anything they can do". Now, in addition to your thoughts and prayers, there is a way to help – in a small way alone, but collectively in a very significant way. Marisa only agreed to this on the condition that NONE of her friends knew about it – she doesn’t want charity, but she is realizing that she needs to focus on her health right now. (A few of her close friends do know, and are now helping – relieved to be actually doing something and remaining anonymous, all at the same time.) We also asked Marisa, that if SHE was presented with this idea, would she contribute $20 a month to someone, enabling them to live and breathe and enjoy their life – she sighed and said she "totally would"… so a little reverse psychology helped too. :)
Marisa sometimes reads this blog so I asked Aimee to bury this post with other posts above it after a day or so, and maybe even yank it (cause Marisa would hit the roof if she found out and pull the plug on the entire thing). Please don’t say anything to her, to make sure that doesn't happen... ummmkay?
Thanks for reading this far and thanks for checking out the website.
It’s me, Aimee…
Marisa is one of the most beautiful people I know, both inside and out. She has cystic fibrosis, but she doesn’t let it define her… though sadly it has ruled her life. Marisa has always been an amazing friend to my brother and our entire family. We’ve been so touched by Scott’s tireless efforts on her behalf, and can’t think of anyone more deserving.
If you would like an opportunity to directly affect someone’s life, please visit:
Every little bit helps, so please forward this to those who might also be interested.