Browsing Tag

Cystic Fibrosis

Guest Posts, Inspiration

Invisible Strings.

November 14, 2014

By Marika Delan.
Fifteen days.
The average number of days in a grace period. It was also the number of days I knew Rose Alma.I wouldn’t have thought that was long enough to get so tangled up in someone else’s thread but I met Rosie on the third day of June. Fifteen days later, I mourned her.I hadn’t even “met” her if you want to get technical. I heard a little of Rose Alma’s story from Jen Pastiloff who had blogged about visiting her in Atlanta, where Rose was hospitalized. Rose had asked Jen to visit her and Jen had gone. Jen had never met her either.

I couldn’t explain how a perfect stranger compelled me to reach out, except that Rose was one of those people whose light could bounce off anything like a mirror in the sun. It’s hard not to want to get close to light like that; it makes everything bright enough to see clearly where there was only darkness before. And Rose reminded me of things I had lost: most recently my nursing job. Thirty years ago, my friend, Lisa Rose.

I felt inexplicably drawn to send Rose a message on Facebook that Monday in June. She was asking all her friends to do random acts of kindness every day of June until her birthday, coming up on June 25th. She would have been 26.

Continue Reading…

Book Excerpts, Guest Posts

Excerpt of “A Life In Men.” A New Novel By The Incomparable Gina Frangello.

January 28, 2014

Excerpt of A Life in Men By Gina Frangello.

Three Honeymoons


What would happen if one woman told the truth about her life? The world would split open. —Muriel Rukeyser, “Käthe Kollwitz”

On New Year’s Eve, 1994, she didn’t think she’d make it to ’95, but here it is almost spring, and she is not only still kicking but feeling inconceivably fresh off another overseas plane ride and holding a fruity welcome drink in the main house of the most luxurious resort she’s ever seen. Its architecture resembles that of a turn–of–the–century village, as envisioned by a partnership of Travel and Leisure and Gaudí. Instead of one big hotel, approximately twenty “villas” dot the elaborately landscaped gardens like mini fairy–tale castles, all squat turrets and shiny tiles and pastel shutters. Instead of outhouses or vermin carrying bubonic plague, the place is so clean that Mary would feel perfectly comfortable licking the floors.

“This looks like someplace Snow White would hang out if she had a price on her head,” she whispers, and she and Geoff laugh into their drinks, intoxicated by their shared delight at the absolute lack of authenticity. They will be on Tenerife for a week, and their covert plan is to never leave the premises of the resort. In their first few days, they stroll the gardens, eat gourmet meals or quick snacks at their choice of restaurants, read novels and drink on the private beach, and then go back to their villa to make love until they are exhausted enough to sleep, only to wake and do it all again.

Geoff calls this a “no stress” vacation. No backpacks, no flooding bathrooms, no hitchhiking. “I don’t want to see you while I’m at work,” he tells Mary, meaning at the hospital. Over their first shared paella he informs her, “I’m going to fatten you up.”

Imagine a man saying he wants his woman fat! Envisioning a fuller swell in her breasts, her thighs brushing one another when she walks, Mary orders a third margarita — plus crème brûlée.

“No more slumming in the third world for you,” Geoff says later, as they float aimlessly in their personal Jacuzzi, sprinkled with fuchsia flower petals, the aroma deepened by steam, so that the air is thick and perfumed like an opium den. “I’m going to make you take it easy if it kills you.”

Then he grimaces.

Places to make love at the resort abound. The hammock on the hill, late at night when no one is around. Their Jacuzzi, Mary lying on her back outside the tub, droplets chilling on her body, while Geoff, standing inside the water like a statue of a Greek god, thrusts his hips, her legs slung over his shoulders. The crevices of the garden, on all fours behind bushes, peacocks gazing on. Mary and Geoff sneak around like children, looking for new places to copulate. A deserted chaise longue at sunset, while the rest of the guests are at the dinner seating. “This is what I wanted to do to you on that chair in Plati Yialos,” Geoff says, diving between her legs. For a moment the ghost of Plati Yialos — of Nix’s nude body hurling itself into the surf — hovers, but then Geoff’s tongue sets to work, sun looming above the water before dropping under, a giant yolk falling into a bowl, and Mary’s back arches and her thighs grip Geoff’s head and muffled voices in the distance only spur them on.

If happy families are all alike, the only thing more homogeneous still is a happy couple. See Mary and Geoff lying poolside with the other young men and women, all paired off like animals marching onto Noah’s ark. Pretty, tanned twentysomethings chatting around the bar, swapping meet–cute stories (Mary and Geoff’s always wins) in their various German, English, American accents. If Mary coughs now and then, even pulls out an inhaler, nobody seems to notice. If she disappears into the villa for a stretch of time to do her PT, surely everyone only assumes she and Geoff are in there swinging from the proverbial coital rafters.

Or maybe that is too simple. Mary’s lungs are still suffering the aftershocks of her Mexican infection; her daily life continues to revolve around time–consuming physiotherapies; now that she lives with a pulmonary specialist, she is less able than ever to forget about her illness. Geoff even does bizarre things like invite his supervisor, her longtime physician Dr. Narayan, over to their house for dinner, and insists on calling him by his first name, Laxmi, though Mary blushes every time, and lives in perpetual fear that the elderly man who has handled her lungs since she was seventeen will now accidentally encounter a pair of her thong underpants or, say, her vibrator while visiting.

She knows that her current bliss cannot be explained away as her feeling “exactly like everybody else” suddenly, but precisely the reverse. To be in such normal love, while simultaneously cognizant of her own difference, makes it seem that the bond she and Geoff share must be deeper, more profound or extraordinary, than bonds shared by the other, regular couples at the resort. Yes, for the first time since high school, Mary has been granted entry to the Normalcy Club, but this time undercover. She and Geoff are complicit in their pretense, so that the average itself has become exotic: every ordinary moment carries an electrical thrill.

Is this finally “happiness”? she wonders. Is this what she always craved? And if so, how long will it last?

On the fifth day, guilt–tripped by the other couples who rave about the casinos and discos in the touristy Playa de las Américas section of the island, Mary and Geoff venture outside the walls of their resort and head for the beachy boardwalk. But despite a dearth of American tourists in the Canary Islands (mainly because most Americans have never heard of them), it turns out that Germans and Brits are just as adept as any ugly American at co–opting a place until it becomes a Fort Lauderdale – like strip mall, complete with fish–and–chips joints, bratwursts, and endless pints of beer, with neon signs and fat senior citizens in sensible shoes. Bombarded by gaudiness, Mary and Geoff scurry past the casino, the dance clubs with wildly pulsating 1980s tunes shaking the sidewalk, the bars in the big, glitzy chain hotels, bypassing the crowds. They amble along the rocks
that line the beachfront, until they once again reach seclusion. Mary takes off her clothes and Geoff looks around nervously but then removes his, too, and they do it up against some rocks that poke and scrape their skin but provide good foot leverage for Mary, since usually she is too short for them to have sex successfully standing up.

Mission accomplished, they hurry back to the idyllic world of their resort.

This, then, is love. That elusive bird that managed to fly forever out of Mary’s reach even in the great cities of Europe and the African bush. That state of being or beast or concept, impossible to pin down, that had started to seem to her a great, mythic hoax — or if not that, then some salve for the simpleminded, not worth its hype. But how underrated, joy. How incompatible with everything she thought she knew of life. In real life your boyfriend ditches you the moment you get sick; in real life planes explode in the sky; in real life your long–lost father is a polygamist shaman. Now, only two months in, Mary is a zealous convert to love and its attendant happiness: an optimism junkie.

She never wants to go back.

On their last night at the fairy–tale resort, they dine in its five–star restaurant. There is only one seating per each evening’s three–hour affair, and you have to dress for dinner. Mary and Geoff wait in the cigar lounge for the seating, sipping cognacs. Geoff has put on what Mary’s father would call a sports coat, and he looks so handsome her brain hurts. At twenty–eight, he is less muscular than the boy she met years ago in Greece (he says he was on crew back then), but his new spindliness becomes him, has taken the macho edge she distrusted in Mykonos off his appearance. He looks kinder now, more vulnerable in his beauty. Sometimes Mary thinks Geoff looks like an actor cast to play the role of himself in a film; his face is too pretty to make sense in the context of a Cincinnati hospital and seems more Hollywood’s idea of what a “good–catch doctor” would look like. His dark hair falls softly in a curve over his eye, making him look like a boy in a 1980s band, sans the eyeliner and with his square jaw for a dose of masculinity. Mary is pretty sure every woman he encounters would like to fuck him, though Geoff says this is ridiculous; he has slept with fewer than ten women, her included. Still, she sits in her strappy black dress next to him, euphoric. This is my boyfriend. This is my life.

At dinner, they order the catch of the day, filleted tableside. They drink a sauvignon blanc from South Africa, which Mary is relieved is dry. She doesn’t know much about wine but recalls having had a sauvignon blanc with Geoff before and its being distastefully sweet. Geoff explained that this has to do with where the grapes come from and in what region the wine is made, but sauvignon blancs seem to come from all over the place, and she cannot keep it straight. He claims it’s his favorite white wine, although Mary finds this perplexing, since it never tastes the same. However, she likes that Geoff knows about wine. It seems a grown–up thing to know about. It makes him seem the antithesis of Joshua or of Mary’s parents. It seems an obscene, glorious luxury to be genuinely invested in the idiosyncratic taste of a grape and to have protracted discussions on this topic without the slightest tinge of irony.

“Look.” Geoff points toward the entrance of the restaurant. “There’s Olivier.”

Mary turns her head. Olivier is what they call the Frenchman who wears a skimpy black Speedo at the pool, his penis coiled like an enormous snake inside. They do not know his actual name, the penis being too terrifying to permit small talk, but Mary, Geoff, and all the other couples have been laughing about him for days. What is he doing here all alone? What is his story? Is his penile bulge fake? Mary watches him enter the restaurant in a loose–cut suit, no woman on his arm. It seems entirely reasonable to suppose that perhaps Olivier exists only for their amusement.

“We should have toasted,” Geoff says, and Mary has to turn away from Olivier’s grand entrance to look at him again. “To our last night in Tenerife.” He raises his glass.

She picks up her own to clink and drink. And there it is.

The reasonable conclusion to all her happiness.

When Mary sees the ring, she does not feel shock. She and Geoff have been together only since the New Year, but still Mary finds she expected this, not only in general but tonight. She thinks maybe she should gasp and clap her hands to her mouth or offer another dramatic gesture of surprise, but all she can do is smile.

“I should have gotten your number at home before you got on that ferry,” Geoff says, not for the first time. “I knew I’d never forget you — I was already in love with you.”

“I want to have a baby,” Mary blurts out. She knows she should be worried that this admission, or at least her timing, will make her sound some combination of unhinged, pushy, and desperate. But she is not worried. It feels perfectly reasonable to conclude that worry has been banished now, too, along with shock and loneliness.

Geoff beams. “Of course! I want that, too!”

“But,” she begins, unsure why she is suddenly compelled to play devil’s advocate to her own desire, “pregnancy could make my health decline. What if I were to leave you with a young child? You’d be saddled for the rest of your life, and I wouldn’t be there to help. It might make it harder to have a full career and to, like, find another

Geoff gapes at her. “Another wife? Are you nuts?”

“Well,” she stammers, “I mean . . .”

The ring is at the bottom of the glass. Geoff glances at it nervously, as if he has suddenly realized that maybe it wasn’t the best idea, chucking it in there while she was scoping out Olivier. All at once he picks up the glass and drains it in one gulp, sticking his man -fingers into the delicate bowl of it and fishing out the ring, thrusting it forward at Mary. “I want you to listen to me,” he says, sliding the wet diamond onto her finger. “Your FEV values are amazing for your age, you have a milder gene mutation — I think you’re going to live for a long, long time, Mary. And as far as a baby goes, I’d never want you to do anything you weren’t comfortable with, but studies are showing that women with good pulmonary function don’t usually decline from pregnancy — some show that women who have children actually live longer. Plus, when the pancreas isn’t affected, as in your case, a transplant could someday offer an entirely new lease on life, where you’re not sick anymore at all.” He gets out of his chair and comes over to her side of the table. For a moment Mary thinks he will get down on one knee, but he is too dignified for that, too full of midwestern reserve, and merely crouches next to her chair. “Look, I’m not kidding myself — I know there are no guarantees. But if I were ever to lose you, the only thing that could make it even slightly bearable would be if I were raising our child and still had a part of you in my life.”

If they were in a movie, this is the part where Mary would begin to cry — where she would fling her arms around him and shout, Yes! to the cheers of the other restaurant patrons. But she is too numb with relief to even speak. She cannot cry. She cannot even feel, precisely, except for an enormous wave of letting go, of surrender. She looks down at her ringed finger and nods, unable to meet Geoff’s eyes. He hugs her tightly, and she wraps her arms around him and hangs on, thinking of the first day he brought her back from the hospital to his condo, and the way she wondered at her lack of nervousness or even, precisely, lust, when they fell together onto his bed. She felt, in contrast, as though they had already been making love for years and had returned to each other after an involuntary absence. For the first time, nakedness seemed neither a costume nor an escape route. Above Geoff’s bed was a framed Nagel print, and abruptly Mary cackled and said, I didn’t realize we were back in 1986, so Geoff, naked with his hard–on bobbing up and down, had stood on the bed, taken the picture from the wall, and put it inside his closet. “I guess since my decorating skills are so awful, you’re just going to have to move in and save me from myself,” he said, and although he had not even been inside her yet, the deal was done. She had already resigned from her job in Columbus and was unlikely to find a new teaching job before the fall, but the very next day Mary took the art she’d acquired in France, Japan, Kenya, and Mexico and, clutching the emptied travel tubes to her chest, spent five hundred dollars having it all framed.

“Hey,” Geoff says, standing quickly, discreetly, before the other restaurant patrons start to stare, “maybe we should come here again on our honeymoon.”

“I can’t believe it,” Mary whispers. “I was just thinking that.”

Click picture of book to purchase.

Click picture of book to purchase.

Gina Frangello is the author of three books of fiction: A Life in Men (Algonquin 2014), Slut Lullabies (Emergency Press 2010) and My Sister’s Continent (Chiasmus 2006).  She is the Sunday editor for The Rumpus and the fiction editor for The Nervous Breakdown, and is on faculty at the University of CA-Riverside’s low residency MFA program.  The longtime Executive Editor of Other Voices magazine and Other Voices Books, she now runs Other Voices Queretaro (, an international writing program.  She can be found at

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Jennifer Pastiloff is the founder of The Manifest-Station. Jen is a writer and retreat leader based in Los Angeles. Check out her site for all retreat listings and workshops to attend one in a city near you. Jen and author Emily Rapp will be leading another writing & yoga retreat to Vermont in October. 

Inspiration, Video

Live From The Hospital in Atlanta. Being Rosie. Video.

April 28, 2013

Hi Tribe,

Yesterday I went and visited one of my readers. It was the first time we’d ever met and it was truly inspiring. Rosie Alma has cystic fibrosis and just received a double lung transplant. Unfortunately, it wasn’t successful but we know the next transplant will be a  match. Rosie did a guest post here on my blog back in October which I am linking here  in case you missed it.

She’s touched me in so many ways, namely by reminding me how it is possible to be present and full of light despite being in a less than desirable situation. How we react is everything and she is the embodiment of her name: Rosie.

Please like her page on Facebook and support her as well as possibly sending her an email or writing on her wall. Her email is Her page is here.

Also, her brother is videoing and chronicling the whole process. It’s so incredible. You can check that out here.

Guest Posts, healing, love

Don’t Miss The Roses.

October 9, 2012

By Jen Pastiloff

Listen up. You love someone? Tell them. You want to see someone? See them. You want to do something? Do it. Stop making excuses.
A couple months ago one of my readers Rose Alma posted on my page that she was in the hospital after having had a double lung transplant and could I come visit her while I was in Atlanta? Naturally, a million excuses came up as to why that would be hard. (I was only there for the weekend. I didn’t have a car. I was busy leading a workshop and bla bla bla.)
I told my excuses to “buzz off” and I went. I went and my life was changed. That’s all it took. Meeting that sweet little light was all I needed to make a huge difference in my life. A huge remarkable difference. Now, had I not gone to see her because of x, y or z? Well, she would have died today and I would have never known how so much joy could emanate from a tiny sick little body. I would never have understood, I mean REALLY really understood what it meant to be gracious in the face of uncertainty, in the face of possible death. I would never have had my life touched. Nor would my sister or my young nephew. Rosie passed away today due to complications from cystic fibrosis and I am heartbroken but I am grateful I had that time with her. I experienced that connection. I could have easily have not. I could have easily said “I am too busy” because, let’s face it, we are all busy. We all have too much to do.
But here’s the thing: nothing is guaranteed. So if you want something, go get it. If you love someone, show them. If you think you are owed anything beyond this moment, you are in for a wake up call of the hardest kind. The truest wake up call there is. And that is that there are no guarantees. That the time is now. That if we spend our lives saying “I can’t” or “I am too busy” we are missing the beauty. We are missing the roses.

I love you Rose Alma. RIP

Below is a guest post Rosie did in October on The Manifest-Station….

The Hunt is Over, Happiness is Yours by Rose Alma

Connect with Rosie by clicking photo.

What is happiness? If I may, I will tell you what it is not. Happiness is not external. It is not an object that we must perpetually chase after. The world has often taught us that happiness is in the material. That we have to pay for it: sacrifice our money and our time, our sanity and our soul to find it. But happiness is something so much more. Something so much deeper, and yet so simple and close. It is something dear and unique to wonderful you.

Happiness is within you. Just as true peace and happiness is already within all beings. We all have the capacity to discover it and genuinely feel it. And it is time you knew this beautiful truth.

If you are having trouble believing this, I ask you to honestly examine all the aspects that currently make up your life. Are you really freeing yourself from the things that do not positively serve you? While you quietly think this over, allow me to explain where I am coming from:

Personally, I am on a neverending journey to expand my consciousness. My struggles with my health, and my journey through the beginning stages of the transplant experience, have been the primary forces that have launched me into this new phase of my life. And I am grateful for the thrust they have given me into genuinely examining who I am as a living being, where I am going, and what ultimately means the most in my life and in this world. The majority of what I read and listen to is all centered around these very subjects: truth, understanding, transformation, and love. All of it intended to help my overall well-being, and to expand my heart and consciousness. Over the last 50+ days, I’ve also dedicated myself to daily meditation. And this in itself has added a whole new depth to my personal journey. Along the way, I have learned so much about myself and about the world (and I continue to). Although I never want to tell others how to live, the vibrancy, energy, and love that is unfolding within me can’t help but extend out to others – to all the beautiful souls who may be able to learn something with me on this journey.

So here are some practices that may help us come closer to our true happiness:

1) Release. We must let go of anything in life that causes us stress or negativity. These elements limit our potential for exploring our true selves and finding our authentic happiness. Though this process of letting go may not always be easy, in the end, we will benefit in ways we may never have imagined possible. So let us release that which no longer serves us.

2) Embrace. One of the hardest practices yet, which I am continuously working on, is embracing change. Because it is an inevitable force; and there is much to gain when we open our arms to change. In what I have been reading and meditating on, they mention that when positive changes come into our lives (job promotion, new baby) we generally welcome the new chapter. But when something unexpected happens – something that may be considered a loss rather than a gain – we close ourselves off to it or resist (like job loss, divorce, moving away). They say that we should pause in those moments of stress or sadness over the unexpected change, and be open to the idea that though this change is hard or not exactly what we wanted, there could be something positive to come of it in the end. Even if we can’t see or predict what it might be. This simple act of opening our mind and heart could make a world of difference in how that change impacts our lives. If we can just continually work, in those moments of struggle or despair, to be open to the light at the other side, it will make the journey through the change so much more beautiful.

3) Explore. Once we have begun to release what does not serve us, and embrace the coming changes of our lives, we are ready to open our hearts and minds to the idea of exploring new sides of our being. We need to seek out new experiences and people who will help us better know and understand our truest self. We must try things that feel both naturally interesting to us, and things that seem outside our comfort zone. (As long as they are safe and healthy.) Pushing ourselves to break past self-imposed barriers, and try things that we might never do otherwise, will allow us to blossom authentically and beautifully. Take up new hobbies, travel, make new friends, write a novel, learn a new language, volunteer at a shelter. We have to learn to step outside the mold we live in – that is, the person that we think we have to be – and start learning to become who we were born to be. And only we, as individuals, can know who that beautiful being is and feel when we are one with them.

4) Give. In order to fully understand and love ourselves, we must learn to step outside ourselves. Look beyond just our needs and desires, and consider the life and world around us. We must realize that there is a little piece of us in everyone, all the world around. And that we should give to all those beautiful souls. Some people need basic necessities, some need guidance, some need just an extra ounce of love, and some could be changed simply by the gentle power of a genuine smile. We must willingly give of ourselves, in whatever ways we can manage. Volunteer at places that meet our interests, help friends in need, be loving towards family, be kind to strangers and children, and always greet a person with a loving heart and kind smile. We can never give too much. And every time we do give, it adds more love to the world around.
5) LOVE. Love is the ultimate answer to all questions in life. It may take time to realize this, and there may be times in life when we bury this truth so deep in the dirt. But it is always there. Once we realize that love is there – even in the dirt, even in the darkness, even in the loneliness and despair – life will be forever changed. We will be forever changed. Time, distance, and differences have no hold on love. It travels everywhere and permeates everything. All we have to do is open our hearts and minds to this beautiful truth. And we must choose, every day, every moment, to live a life of love. Even when times are dark. Especially when times are dark. Because love still lives in the dark. It lives even there, so that we may grab hold of it when everything else falls away. Love is our light post. And it will show us the way to the other side.
These loving practices are what I am learning along my great journey in life. I wanted to share them with you, and hopefully illustrate how I feel you can learn with me. I am not one to tell others how to live, but please try to allow these ideas into your heart. Know that happiness is already within you, change doesn’t have to seem so daunting, and love is always around you and within you. You deserve to be free of anything in life that places negativity on you. And you deserve to give yourself a fair chance at exploring all the possibilities that the world and life have to offer. I want only for you to realize the depth of potential in you, and for you to know that the pathway to greater freedom – whether external or internal – just takes one step at a time.

Our lives and circumstances may be vastly different. But, we are one.

Let us walk together on this path to greater consciousness, happiness, and love.

Rose Alma is a 25-year-old Cystic Fibrosis patient on the transplant list for double-lungs. Ten years of exacerbations and IV treatments eventually lowered her lung function post-college. She has been listed at University of Alabama for almost two years, and is presently trying to get double-listed at Emory in Atlanta. An artist and poet, Rose also has a Baccalaureate in Education. Though she always dreamt of teaching preschool, her health has driven her to explore new realms. She has created short films, music, poetry, and also enjoys vegan cooking and meditation. Post-transplant she hopes to practice yoga, regularly volunteer in her community, and become a Certified Holistic Life Coach. 
Visit her Facebook, or her website We are one.
Join Jen Pastiloff in Tuscany Sep 17-24, 2016. There are 5 spaces left. Email asap. More info here. Must email first to sign up.

Join Jen Pastiloff in Tuscany Sep 17-24, 2016. There are 5 spaces left. Email asap. More info here. Must email first to sign up.

March 13 NYC! A 90 minute class for women, girls and non-gender conforming folks (we encourage teens 16 and up) and all levels that will combine flow yoga, meditation, empowerment exercises, connection and maybe, just maybe, a dance party. This will be a class to remind you that you are enough and that you are a badass. It will be fun and empowering and you need no yoga experience: just be a human being. Let’s get into our bodies and move! Be warned: This will be more than just a basic asana class. It will be a soul-shifting, eye-opening, life-changing experience. Come see why Jen Pastiloff travels around the world and sells out every workshop she does in every city. This will be her last class before she has her baby so sign up soon. Follow her on instagram at @jenpastiloff and @girlpoweryouareenough. Jen is also doing her signature Manifestation workshop in NY at Pure Yoga Saturday March 5th which you can sign up for here as well (click pic.)

March 13 NYC! A 90 minute class for women, girls and non-gender conforming folks (we encourage teens 16 and up) and all levels that will combine flow yoga, meditation, empowerment exercises, connection and maybe, just maybe, a dance party. This will be a class to remind you that you are enough and that you are a badass. It will be fun and empowering and you need no yoga experience: just be a human being. Let’s get into our bodies and move! Be warned: This will be more than just a basic asana class. It will be a soul-shifting, eye-opening, life-changing experience. Come see why Jen Pastiloff travels around the world and sells out every workshop she does in every city. This will be her last class before she has her baby so sign up soon. Follow her on instagram at @jenpastiloff and @girlpoweryouareenough.
Jen is also doing her signature Manifestation workshop in NY at Pure Yoga Saturday March 5th which you can sign up for here as well (click pic.)