#i can see myself moving back to a touch smartphone eventually but my habits have been forever changed for the better

[skeuo]

reflecting on what it's been like primarily using a flip phone in the current year. i've been using mine for a good few months now. i want to write a piece on this soon.

[honeyhopeful]

how to navigate personal hygiene and self-care when the days become hard

When I was at my lowest, I remember how hard it was to do things. I would leave my room a mess, I wouldn’t bother combing through my hair, and I would neglect my meals  - all I had the energy to do was lay in my bed and wait until minutes passed by, and eventually that turned into hours.

 It has been years since I had my last low-point, which is a celebratory thing. But I knew how hard those days were when all you really had the energy for was to lay in bed, or stare at the wall, or sleep for long periods at a time.

 Then, I figured, why make things hard on myself? I cannot control my periods of inactivity, but I can make my environment more understanding and nurturing. Here are some of my personal tips to make me feel slightly more alive, and all of these take very little energy to execute.

 1. Cleansing facial wipes were a godsend

 Washing my face every morning became a routine late-2013. There’s something refreshing about washing away the grime and sweat that accumulated after a good nights’ rest. Massaging my face in little circles with warm water also properly woke me up to face the upcoming day; especially since I knew I would be outside for long periods of time, I always liked to properly prep my face with nourishing skin-care and a strong SPF. But on the days where I didn’t feel up to my usual routine, for one reason or another, I always returned to my trusty facial wipes – safe for sensitive skin – my Simple Facial Radiance wipes always does the trick. These wipes are filled with gentle, skin cleansing ingredients without any harsh additives – so they can easily remain on your face and no need t rinse afterwards. They impart a light, gentle scent which does not overwhelm the senses and retains its scent for a long time. These wipes yield a nice, soft clean face and it can make all the difference in your mood and how you feel throughout the day. I would definitely remind yourself to add the SPF – as that provides facial protection against harsh sunrays, but if you can’t then I would wear a hat and stay out of the sun.  2. How to take care of your body's' hygiene. Similarly to facial wipes, when I don't feel up to showering but I still need to clean up I like to use a warm damp washcloth. Focusing on areas deemed the most important - such as underarms, genitals, and chest. I like to add soap when it comes to cleaning my underarms to really exfoliate the skin and have it smell clean and fresh.   Applying deodorant directly after also makes it last longer; if you're someone that sweats easily I would opt for using a men's' based deodorant - the scents in the men's range are more powerful and have better long-lasting power.  For my hair, especially if I haven't touched or combed it in a week - I like to apply dry shampoo to the scalp to soak up some of the greases as well as impart a fresh, floral and slightly fruity scent to my hair. I then either wear a hat or pull my hair up in a tight ponytail to make it look polished and clean.   3. Understand your environment and make it work for you Last winter, I was presented with the opportunity to completely change my environment. Because I was always working and did not dedicate enough time to clean my living space, I made it so that cleaning would take less than 30 minutes. Before I converted my living space into a breathable minimalist room – I had shelves upon shelves upon shelves and tiny knick-knacks gathering dust – you could only imagine the amount of mess that was accumulated in that tiny room. So, I was fed up – got rid of all my shelves and clutter and only retained a workspace, a vanity table, and a bed-side table. Reducing the number of shelves and the space for clutter immensely freed up my cleaning time. While before I took almost all-day to organize, dust, polish, sweep and wash my room – my cleaning time was reduced to 30 minutes or less, and that includes organizing my wardrobes. But back then, I had to compile creative ways to make sure I don’t make a mess of my room. What I did back then was move my bins closer to where I was working, that way if I needed to throw away some recycling all I had to do was drop them into the bin next to me without getting up and moving. I would also move the things I used the most closer to me. For example, on days where I will be working from home, or need to have a day in bed, I would move a bottle of water, my bin, and my low-maintenance facial creams on my bedside table - this helped me retain hygiene whilst also understanding my limits that day. When I needed to start cleaning my room, I would start on a small section and spend 5-10 minutes tidying up – this could be as simple as organizing clutter to simply wiping down the countertops – whatever I had the energy for that day – sometimes when starting with a small, easy area that is done in a few seconds, it would give me that burst of energy to continue cleaning. Blaring my most productive music on full-volume, I would clean up my entire room and then celebrate with a nice, long warm bath. However, I am a big believer in moving things around to suit your needs and understanding your environments in most problematic areas. Practising this had made me more in-tune with my living space, my strengths and my weaknesses. One of my friends' tips, when she struggled with cleaning her kitchen, was to remove the cabinet doors – she said allowing her to see what was inside saved her from opening and closing and made her cleaning process faster. Little tips like that can seem excessive, but they do work. Another favourite tip of mine is working in piles. If I am arranging my wardrobe, I work with one shelf, and then I would just do shirts, the next day I do skirts, the next day I do jeans ­ these tips also help if you’re easily fatigued and/or distracted! What I also like to do is do small cleaning rituals one day of the week, and then a full thorough clean another day of the week. I space them out to give me enough time to recharge in-between cleans. I also make sure I am in a good mood whilst I clean, and I do this by perhaps putting on my favourite music, making sure I have adequate sunlight or I am well-hydrated. It's important to track your mood and try to take advantage of your good moods, bad moods and neutral moods.  4. Lists, alarms, reminders and everything in between Recently, I had oral surgery and I had been put on an oral-cleaning regimen that requires me to brush my teeth every 45 minutes after a meal. So, naturally, my phone's timer has been pulling double-duty.  But long before that, I have been utilizing alarms, reminders, schedules just to remind me of the little things and, in some small way,  provide the incentive for doing something. For example, when I wanted to remember to drink water, I had my phone send me notifications, gently asking me if I drank water that day. I downloaded a charming little app on my smartphone that charts your water intake and you get a virtual plant friend to cheer you on, thus giving you more incentive to drink water. I had completely stopped drinking fruit juices and sodas and was drinking about 2 litres of water a day. I have also begun to the habit of note-taking and list-making. I lined up everything I wanted to get done that day and crossed them out when I was finished. There are several list-making apps available on smartphones and one of my personal favourites is Habatica - a whimsical app that takes completely tasks into a fun little game where your virtual character grows stronger the more tasks you complete.  Notifications, sticky notes, lists, reminders, alarms - a lot of those help me remember about things I need and want to do. Sometimes when I'm working, or having a particularly rough couple of days, having my phone which is on me almost all day remind me about basic things such as teeth brushing, cleaning my room, eating and even drinking water helps me not lose myself to the confines of my bed - where hours melt into days and my energy dissipates.  5. It takes a village sometimes.  I am privileged enough to not be living on my own and I am comfortable in my limitations to ask for help whenever I need to do something but I simply cannot complete tasks on my own, either due to lack of focus, energy or time.  I strike deals with my mother that if I polished all of the furniture in my room, then she could wash the floors while I reward myself with an extra 30 minutes of sleep. When it comes to washing the dishes, me and my sibling would split the task - one of us would do the drying, and one of us would do the washing. When I really need to clean my living space but I have no one to ask for help physically close to me, I like to call my friends and talk to them while I clean - this really helps cut out distraction using your smart phone and computers - especially when both of you are cleaning at the same time.  Forcing yourself to clean is never easy, and if you can ask for some help, I would highly suggest doing so - sometimes having your parents check in on you and remind you to do things can really help. One of my friends lives in a shared house together with a bunch of strangers, on their cleaning days they have a list of chores that they fairly separated and delegated together. When one of them does not have the energy or mental capacity to clean, the people pull double-duty to let the other person rest.  The beauty of humanity is that we're not meant to be alone. People have helped each other and supported each other whenever it counts; villages have often tended to the sick and the elderly, whilst men hunted and brought back enough food to feed everyone. In many close-knit communities, historians can definitely tell you one thing: no one gets left behind.   If you are feeling particularly bad or spent or you can't fathom any energy to clean your house, or room or living space - don't be afraid to reach out and ask for help. If you have a very limited amount of contact with people; finding online resources and online support groups can often help. At the moment, I am currently learning the KonMari way of tidying up. Maria Kondo is a Japanese organizer that has lately been making the rounds on talk shows, home-organising shows and articles. Her gentle, nurturing approach to tidying up is one that is a breath of fresh-air with extremely effective and useful advice. People with obsessive-compulsive disorder, ADHD, and hoarding tendencies have discussed how this woman has helped them keep track of their living space and curating a joyful home environment.    But what happens if I can't do all of this?  That's okay.  Recovery is not linear, and sometimes taking care of yourself feels like an uphill battle. This article may or may not work for you, but it's here for when you're ready to try. If all you did was get out of bed and let some air out of the covers - then that's enough. If all you did was brush your teeth, then that's okay!  It's always good to remember that your recovery journey and self-care regimens come at a slow pace and you should not feel shame if you cannot clean your room, or wash the dishes, or brush your hair or even take a shower - while these things must be done - you must be gentle with yourself and remind yourself that this is a hard thing, but someday you will achieve your goal.  Until then, stay hopeful.   

[flas]

Flour or Wheat - Wentworth Miller

I've been coming here a long time, to this strip mall hole-in-the-wall Mexican restaurant off the freeway, with the chicken quesadillas I decided somewhere in my mid-20s (without much research, admittedly) were the best in Los Angeles.

In 199-something it was a small chain with franchise dreams and few locations, one of which was near-ish my apartment. When it closed I started commuting to a location that was not near-ish. It was far-ish. And when I brought someone along they would inevitably pronounce, between bites, that it wasn't worth the gas.

I paid them no mind.

I have a history of mental health issues and routine is important to me. Also consistency. Which might be why, once I started coming, I didn't stop. Why in the hundreds of times I've approached the counter I've always ordered the same thing.

Always.

One chicken quesadilla on a flour tortilla with guacamole. Rice and beans on the side. Plus chips.

Seriously. I've never tried anything else on the menu. For all I know the shrimp tacos make men weep. I don't care. They're not on my radar.

Yet somehow, despite getting the same meal about twice a month maybe ten months a year for almost fifteen years, the guy behind the counter never remembers my order.

Ever.

Or, by extension, it would seem to follow, me.

This isn't "Cheers." Nobody knows my name. And if anyone's glad I came, they're keeping it to themselves.

Eventually I learned not to expect the guy behind the counter to know my order. What I could expect was a set mouth and a flat stare. Free of charge.

And that's been a relief.

At times.

At times I have deeply appreciated being made to feel anonymous. No one approaches me here. No one asks for a photo. No one seizes an opportunity to go full koala around my waist while a friend repeatedly fails to take a picture on their smartphone.

Other times, vacuum-sealed in my LA existence, moving from apartment to car to freeway and back, the luxury of not having to touch or be touched by another human being mine to indulge, I have very much wanted the guy behind the counter to know my order without me telling him first.

But no. Every time I walk in we have essentially the same exchange we've been having lo these many years:

Him: Upward nod and/or raised eyebrows with a split second of eye contact to signal I have his attention.

Me: "Chicken quesadilla, please."

Him: "Flour or wheat?" They've got two kinds of tortillas to choose from.

Me: "Flour." Let's not go crazy.

Him: "Rice and beans?"

Me: "Rice and beans."

He spreads a flour tortilla on the stovetop, sprinkles it with cheese while I pay at the register then get my salsa from the salsa bar. Unless I get my salsa from the salsa bar first then pay after. That part changes depending how fast the lady at the register rings me up. (I think of this as my chance to practice being flexible.)

When my tortilla is done browning and the cheese melting, the guy takes it off the stovetop and says, "Chicken or steak?" Even if I am the only customer in there, mine the only order being juggled, I will be asked to repeat my choice of protein.

Me: "Chicken."

Him: "Rice and beans?"

To be fair, I don't know his name or order either (assuming he eats there too). To be fair, I'm sure it's no picnic chopping onions and grilling carnitas for a living. I spent a summer scraping uneaten refried beans off plates at a Mexican restaurant in Phoenix. An outdoor restaurant. In Phoenix. In summer. So while I don't/won't insult the guy behind the counter by pretending to understand the depth/breadth of his experience, I feel like I can imagine it. At least a little bit.

Or maybe not. Maybe I'm just a spoiled jerk with a sense of entitlement. Maybe the guy's having an off decade. Maybe his dog ran away and never came back. Maybe he needs some sweet understanding. Maybe I should cool it with the judgments and projections. Maybe it shouldn't matter to me that he can't (won't?) remember my order.

But it does.

Whatever. I don't come for the service. I come for the quesadilla. Which, most likely, is average. But which, drawn to ritual as I am, I've eaten enough times to become sentimental about. Ditto the 90-minute drive there and back, the smell of the hand soap in the bathroom, the validation stamp with the red ink they stamp on my parking stub that gets on my fingers if I touch it before it dries. This is my spot. My joint. My Cheers. Even if nobody knows or cares what my name/order is. This (most likely average) quesadilla is threaded through my LA history, this city I've liked and hated (almost) equally, a place I came to because it's "where the work is" and, now that the work is taking me away, I'm thrilled to leave. A town that has never felt like home, even if it was where I chose to lay my head.

As the poet said, #notmyvibenotmytribe.

Which is why, on the eve of my permanent departure, about to begin a new job in a new city in a new country, as I ready myself for a set of experiences that promise change and growth and shift and all the things that used to frighten me but which today I recognize and embrace as gift and gold, it's only fitting that I make the drive to my little Mexican restaurant one last time, for one last chicken quesadilla on a flour tortilla. And by doing so honor all the other times I came here to enjoy "my last quesadilla." Not because I was leaving town but because I was going to go home and kill myself.

Of my close friends, I've known Depression the longest.

By 10 we were well-acquainted. He was there for my first attempt, at 15, for my second, freshman year at Princeton, and for the multiple dress rehearsals and close calls that followed. He was there as recently as four years ago, seated in the front row for what was in some ways my most serious breakdown since college. When all I wanted was to die. When Depression had me convinced - deep down, on a cellular level - that I Would Always Feel This Way and that There Were No Other Versions Of Me/Life On Offer.

That was before I realized Depression is a Liar.

That was before the daily meditation, the prayer, the affirmations. Before the therapy, the men's work, the move from isolation into community. Before the self-expression via writing (privately, professionally) and coming out (publicly). Before the gentle (and sometimes not-so-gentle) letting go of the people, habits, and belief systems that knocked me out of my body, lowered my frequency, and robbed me of a good night's rest. Before the gradual conclusion that I did not come into this world preprogrammed to self-destruct. (That upgrade/virus came later, courtesy of outside influences.) Before the understanding (remembering?) that my birthright is joy. But joy won't just come when I call it. I have to invite it. Gently. With intention. Building a connection, a trust, over time.

But I digress. Where was I? Oh yes. Chicken quesadillas.

Over the years, on a handful of dark days, I would determine that my final meal would be my favorite and when it was finished, I would exit this earth. Because I couldn't imagine feeling better. Because I couldn't imagine a different, vastly improved state of existence.

Which, obviously, represents a colossal failure of my imagination.

That was another tool in Depression's toolbelt: the limits of what I could and could not imagine.

The man I was then couldn't have pictured the man I am now, moving (more) consciously and (more) thoughtfully through the world, (more) alert to the people, habits, and belief systems that invite peace and purpose into my life on a daily basis. A man departing (escaping) Los Angeles with a plateful of things to look forward to.

The man I was then wouldn't have believed any of this was possible. But it was. Is.

And to celebrate, I'm treating myself to one last chicken quesadilla on a flour tortilla before I go. Because it's f-cking earned. If I do say so myself.

I park my car in the underground lot, get my parking stub, enter the restaurant. I walk past the guy behind the counter and into the bathroom to wash my hands. Emerging, I get my tray, approach the counter, and see that for the first time in the near fifth of a century I've been frequenting this chain, on what is potentially and very probably my final visit to this strip mall hole-in-the-wall, this totally unexceptional restaurant I've spent years patronizing and a not inconsiderable amount of gas money getting to from various apartments, the guy behind the counter has already got a tortilla heating on the stovetop for me. Flour.

Eyes down, he sprinkles it with cheese, says to me or himself or to both of us, "Chicken quesadilla."

It is a statement. Not a question.

I say, "Yes. Please."

And "Thank you."

[cutepoison0104]

In honor of Wentworth Miller’s decision to unpublish his facebook page, and his granted permission to save anything we’d like to, I’d like to post the first ever thing I read on his facebook page; something that impacted me greatly. Word for word. Link for link.(Because why preserve something if you only take pieces?)

Flour or Wheat. 

I've been coming here a long time, to this strip mall hole-in-the-wall Mexican restaurant off the freeway, with the chicken quesadillas I decided somewhere in my mid-20s (without much research, admittedly) were the best in Los Angeles.

In 199-something it was a small chain with franchise dreams and few locations, one of which was near-ish my apartment. When it closed I started commuting to a location that was not near-ish. It was far-ish. And when I brought someone along they would inevitably pronounce, between bites, that it wasn't worth the gas.

I paid them no mind.

I have a history of mental health issues and routine is important to me. Also consistency. Which might be why, once I started coming, I didn't stop. Why in the hundreds of times I've approached the counter I've always ordered the same thing.

Always.

One chicken quesadilla on a flour tortilla with guacamole. Rice and beans on the side. Plus chips.

Seriously. I've never tried anything else on the menu. For all I know the shrimp tacos make men weep. I don't care. They're not on my radar.

Yet somehow, despite getting the same meal about twice a month maybe ten months a year for almost fifteen years, the guy behind the counter never remembers my order.

Ever.

Or, by extension, it would seem to follow, me.

This isn't "Cheers." Nobody knows my name. And if anyone's glad I came, they're keeping it to themselves.

Eventually I learned not to expect the guy behind the counter to know my order. What I could expect was a set mouth and a flat stare. Free of charge.

And that's been a relief.

At times.

At times I have deeply appreciated being made to feel anonymous. No one approaches me here. No one asks for a photo. No one seizes an opportunity to go full koala around my waist while a friend repeatedly fails to take a picture on their smartphone.

Other times, vacuum-sealed in my LA existence, moving from apartment to car to freeway and back, the luxury of not having to touch or be touched by another human being mine to indulge, I have very much wanted the guy behind the counter to know my order without me telling him first.

But no. Every time I walk in we have essentially the same exchange we've been having lo these many years:

Him: Upward nod and/or raised eyebrows with a split second of eye contact to signal I have his attention.

Me: "Chicken quesadilla, please."

Him: "Flour or wheat?" They've got two kinds of tortillas to choose from.

Me: "Flour." Let's not go crazy.

Him: "Rice and beans?"

Me: "Rice and beans."

He spreads a flour tortilla on the stovetop, sprinkles it with cheese while I pay at the register then get my salsa from the salsa bar. Unless I get my salsa from the salsa bar first then pay after. That part changes depending how fast the lady at the register rings me up. (I think of this as my chance to practice being flexible.)

When my tortilla is done browning and the cheese melting, the guy takes it off the stovetop and says, "Chicken or steak?" Even if I am the only customer in there, mine the only order being juggled, I will be asked to repeat my choice of protein.

Me: "Chicken."

Him: "Rice and beans?"

To be fair, I don't know his name or order either (assuming he eats there too). To be fair, I'm sure it's no picnic chopping onions and grilling carnitas for a living. I spent a summer scraping uneaten refried beans off plates at a Mexican restaurant in Phoenix. An outdoor restaurant. In Phoenix. In summer. So while I don't/won't insult the guy behind the counter by pretending to understand the depth/breadth of his experience, I feel like I can imagine it. At least a little bit.

Or maybe not. Maybe I'm just a spoiled jerk with a sense of entitlement. Maybe the guy's having an off decade. Maybe his dog ran away and never came back. Maybe he needs some sweet understanding. Maybe I should cool it with the judgments and projections. Maybe it shouldn't matter to me that he can't (won't?) remember my order.

But it does.

Whatever. I don't come for the service. I come for the quesadilla. Which, most likely, is average. But which, drawn to ritual as I am, I've eaten enough times to become sentimental about. Ditto the 90-minute drive there and back, the smell of the hand soap in the bathroom, the validation stamp with the red ink they stamp on my parking stub that gets on my fingers if I touch it before it dries. This is my spot. My joint. My Cheers. Even if nobody knows or cares what my name/order is. This (most likely average) quesadilla is threaded through my LA history, this city I've liked and hated (almost) equally, a place I came to because it's "where the work is" and, now that the work is taking me away, I'm thrilled to leave. A town that has never felt like home, even if it was where I chose to lay my head.

As the poet said, #notmyvibenotmytribe.

Which is why, on the eve of my permanent departure, about to begin a new job in a new city in a new country, as I ready myself for a set of experiences that promise change and growth and shift and all the things that used to frighten me but which today I recognize and embrace as gift and gold, it's only fitting that I make the drive to my little Mexican restaurant one last time, for one last chicken quesadilla on a flour tortilla. And by doing so honor all the other times I came here to enjoy "my last quesadilla." Not because I was leaving town but because I was going to go home and kill myself.

Of my close friends, I've known Depression the longest.

By 10 we were well-acquainted. He was there for my first attempt, at 15, for my second, freshman year at Princeton, and for the multiple dress rehearsals and close calls that followed. He was there as recently as four years ago, seated in the front row for what was in some ways my most serious breakdown since college. When all I wanted was to die. When Depression had me convinced - deep down, on a cellular level - that I Would Always Feel This Way and that There Were No Other Versions Of Me/Life On Offer.

That was before I realized Depression is a Liar.

That was before the daily meditation, the prayer, the affirmations. Before the therapy, the men's work, the move from isolation into community. Before the self-expression via writing (privately, professionally) and coming out (publicly). Before the gentle (and sometimes not-so-gentle) letting go of the people, habits, and belief systems that knocked me out of my body, lowered my frequency, and robbed me of a good night's rest. Before the gradual conclusion that I did not come into this world preprogrammed to self-destruct. (That upgrade/virus came later, courtesy of outside influences.) Before the understanding (remembering?) that my birthright is joy. But joy won't just come when I call it. I have to invite it. Gently. With intention. Building a connection, a trust, over time.

But I digress. Where was I? Oh yes. Chicken quesadillas.

Over the years, on a handful of dark days, I would determine that my final meal would be my favorite and when it was finished, I would exit this earth. Because I couldn't imagine feeling better. Because I couldn't imagine a different, vastly improved state of existence.

Which, obviously, represents a colossal failure of my imagination.

That was another tool in Depression's toolbelt: the limits of what I could and could not imagine.

The man I was then couldn't have pictured the man I am now, moving (more) consciously and (more) thoughtfully through the world, (more) alert to the people, habits, and belief systems that invite peace and purpose into my life on a daily basis. A man departing (escaping) Los Angeles with a plateful of things to look forward to.

The man I was then wouldn't have believed any of this was possible. But it was. Is.

And to celebrate, I'm treating myself to one last chicken quesadilla on a flour tortilla before I go. Because it's f-cking earned. If I do say so myself.

I park my car in the underground lot, get my parking stub, enter the restaurant. I walk past the guy behind the counter and into the bathroom to wash my hands. Emerging, I get my tray, approach the counter, and see that for the first time in the near fifth of a century I've been frequenting this chain, on what is potentially and very probably my final visit to this strip mall hole-in-the-wall, this totally unexceptional restaurant I've spent years patronizing and a not inconsiderable amount of gas money getting to from various apartments, the guy behind the counter has already got a tortilla heating on the stovetop for me. Flour.

Eyes down, he sprinkles it with cheese, says to me or himself or to both of us, "Chicken quesadilla."

It is a statement. Not a question.

I say, "Yes. Please."

And "Thank you."

www.huffingtonpost.com/news/national-suicide-prevention-month/ www.thetrevorproject.org www.afsp.org www.suicidepreventionlifeline.org www.activeminds.org www.iasp.info

[phillyvoices-blog]

The Whirlwind: In Conversation with Nico Meyering

“You don’t really have a choice about getting knocked down. You do have a choice between staying down or getting back up.”

The view from this height is breathtaking.

I’m meeting my interviewee for lunch at the University Club, a top-floor members-only restaurant and lounge for students, faculty, and staff of the University of Pennsylvania. I’m a PhD student there, enjoying the Club’s “first year of membership free” perk. And my interviewee is enjoying the large tables.

“Sorry bro, I like to spread out.” Nico Meyering grins sheepishly at me, running a hand through his blonde hair, a nervous habit he will repeat often during our time together. On the table are a spreadsheet, a notepad with some hasty scribbles, a smartphone he uses like a computer, a half-forgotten graphic novel, and a sparse lunch of sweet potato soup, two turkey burgers, and mixed vegetables that he keeps meaning to eat. The phone lights up with some sort of reply and Nico speaks into it, recommending a sleep study and a “trach downsize before decannulation” before adding that he isn’t a medical professional. I admit that I don’t know what any of those words mean.

Nico isn’t a medical professional but he IS a whirlwind.

I met Nico years ago when we were both graduate students at Binghamton University. I thought his energy and constant movement was just the result of too much coffee or the stress of final exams. But here, dressed semi-formally, he’s the same whirlwind from before. The first thing I learn about Nico is that he’s always moving. I’ll learn much more over our hour together.

Nico was born 31 years ago with a nervous system disorder called congenital central hypoventilation syndrome (CCHS). The most notable and life-threatening symptom is the body’s lack of an automatic impulse to breathe, which means people with CCHS need lifelong mechanical ventilation when they sleep. Some need around the clock venting. Other CCHS concerns may include eye/vision issues, speech delays, or digestion issues.

After Nico was born, his mother swung into action, finding other CCHS families and bringing them together to share stories, support one another, and eventually connect doctors to families. A few decades later, those ragtag families are now The CCHS Family Network, Inc., a federally-recognized nonprofit that funds research and raises tens of thousands of dollars for the roughly 1200 people worldwide living with this condition.

Nico has been ever-present; he shows me photos from each successive gathering. He rattles off his various duties: moderating the group’s Facebook presence, being a liaison between people with CCHS and their families, explaining CCHS to general audiences (his TED talk from December 2017, Dis-ABLE-d, has been viewed on YouTube over 500 times), and trying to mentor teens and preteens with the condition.

“We are ninety-nine percent just as healthy or normal as people who don’t have CCHS. We have hobbies and interests and pet peeves and everything. I keep telling people: CCHS is manageable when you stay on top of it. It’s not fatal. It’s not degenerative. We have equal or better life expectancy. We get married, we have jobs, we get stuck in traffic, everything.”

The second thing I learn about Nico is that he jokes as much as he moves: constantly. It’s possibly his humor that has kept him going; while CCHS isn’t fatal, it also isn’t trivial. Nico rattles off over a dozen names of friends he has lost to illnesses made worse by CCHS or to tragic mistakes like falling asleep off their vents. “It’s up to us, you know, to keep their names alive. We gotta keep telling their stories.” He says determinedly. Behind that determination, however, is a measure of sorrow: Nico has lost many friends and he admits that it’s difficult to find new ones. But when he feels like I’m asking too many questions about the sadness, anxiety, and risk of living with rare diseases, he noticeably steers the conversation to a happier topic.

“You don’t really have a choice about getting knocked down. You do have a choice between staying down or getting back up.” He points out, making rare eye contact with me.

At 31, most Americans are building resumes or families. Nico is helping to build a movement. His vision of the CCHS community is larger and more comprehensive than the original group that met once every few years.

“I think something every group needs to constantly work on is inclusion and evolution. Our group is no different. That’s why we had a paper newsletter for so many years and now we’re online. It’s why we were English-language only for a long time and now we have some volunteers who can translate for us. We began by talking mostly about physical health and medical issues, now we include mental health and social issues. Young adults with CCHS were the first people to begin discussing the emotional burden of life with a rare disorder.”

I ask him what else the CCHS Network needs to do.

“We need to keep raising money because that money goes right to funding CCHS research. We’re rare and we’re a small group, so nobody’s gonna save us. We save ourselves. We share research and medical articles on CCHS, but we also need to start dealing with practical questions. I mean, a young couple who find out their baby has this disability aren’t interested in medical articles right away. They need to know about trach care, venting options, and how to talk about CCHS with other people. Chances are that they’ll have to educate doctors and nurses about it all.”

Nico’s in-your-face advocacy didn’t come naturally. He wasn’t outspoken about disability issues and disability rights when I first knew him. He is an introvert and his family is private by nature; Nico thinks it took significant time for them to accept Nico speaking candidly about his disability. And while Binghamton-Nico is different from Philadelphia-Nico, the seeds of change were always there: his early championing of LGBT and mental health issues years ago influenced how he advocates for people with CCHS today. “Whether it’s gay rights or disability rights or any other issue, this is true: if you don’t talk about it there won’t be any progress. You make your own momentum.”

Part of Nico’s value as a patient advocate comes from the bonds he’s formed in progressive communities. He marched alongside Occupy Wall Street, handing out water bottles and band-aids to other protestors. He volunteered with a soup kitchen and still keeps in touch with the guests he served. When a local school district cut sex ed classes, Nico volunteered with a LGBT community center to talk about contraceptives and consent. He protested so much at city council meetings that he eventually got thrown out of Binghamton’s City Hall for promoting services for homeless people, something he still gets visibly annoyed about. Seven years later, though, the people that share his posts and donate to his CCHS fundraisers are those same people he spent so long helping. In the week since our interview I found myself back in Binghamton to see family, and almost everyone I talked to, from the city’s former Mayor Ryan to guests at Nico’s former soup kitchen, remember his name and deeds.

Nico cracks a grin when I mention my Binghamton visit. “The biggest thing I learned there is that you eventually need friends, allies, people in your corner. You can do a lot on your own, but you do more in a team. If we can work together to write a grant or help someone in need, then that’s what we’re gonna do. Eventually the CCHS Network will have to work with biotech or pharma companies to develop a cure, so it’s good practice.”

I ask him about partnerships the Network has formed already and he demurs, but he does offer some thoughts on rare disease partnerships in general: “I was at the Global Genes conference [for rare disease research] back in June, and I can tell you that most research hospitals and biotech companies recognize the need to work with patient advocacy groups. We are no longer ignored. There are maybe some researchers who think they can whip up a cure without patient involvement, but they’ll learn really fast that they need our input because without it they will go bankrupt.” He rubs his goatee briefly, “The market is real Darwinian like that.”

We pause so Nico can send an email to a CCHS family in Michigan. He signs off with an apology for replying so late. When I see his phone wallpaper it’s a woman with long black hair holding a long, black cat. He sees me looking and smiles. Nico is never short on words and each story is like a voyage.

He met Brittany online in April 2016. He noticed they were both AmeriCorps alumni and shared an interest in anime and Star Trek. At first he hesitated. He was unemployed and she mentioned wanting to eventually move to New York City. Nico was looking for a long-term relationship and she was only in the area to tend to an ill family member. But he took the time to send a few paragraphs and their first date was at a local Thai restaurant. The two now live together in Philadelphia, where she is a teacher and he is a financial administrator for a rare disease center. The couple got engaged in December and they share their apartment with three cats: Apollo, Hera, and Hermes.

“I dated some women for a year here and there, but we’d always break up whenever I finished school or moved states to take a new job. Brittany has really stuck with me.”

Nico claims to have been a nervous kid growing up, dealing with health concerns and wanting to fit in. Sometimes he’d descend into crying fits because he felt emotions too strongly, like a time when one or two misbehaving kids caused his entire class to miss recess.

“I think we get this message as kids, and this is especially true for boys I think, that emotions should be buried or that you handle difficult situations yourself. This is a bad message. It’s harmful. It took me a while to figure out that emotions and friends are strengths rather than weaknesses.”

I don’t see any trace of that nervous kid. Nico leans back in his chair, rubs his hand over stubble, peppers his sentences with “bro”, “dude”, and “man” regardless of gender, and fires off a quick message about different CCHS mutation types. To passerby, he is just a nerd reading a Spider-Man 2099 comic (he points out that it’s a different character than regular Spider-Man,) not one of the biggest names in a very small pond.

But why is he so busy? Why now? After living in a handful of different states and working tons of different jobs, Nico saw some patterns emerging for disabled youth. For one, he says, there’s a knowledge gap and a skills gap between the end of high school and becoming an established adult. The time you spend getting your health under control is time you can’t spend learning life skills. In fact, Nico reveals that he learned how to tie a tie and how to shave by watching YouTube videos.

“When I was on the job market, CCHS moms would always remind me ‘You need a job with good health insurance!’ They wouldn’t stop reminding me. I think they may believe it is easier to get a full-time job with benefits than it really is. Even if you have the schooling and the skills, it’s difficult. Even when you have insurance, it’s tough to understand it.”

So Nico made a checklist to help young adults and their families prepare for independent living. “It’s a conversation families need to have together. It’s not you versus your kid. It’s your whole family versus the problem.”

Other projects followed: a guide to seeking employment while disabled, a guide to CCHS care in schools, one-page factsheets about CCHS for families to give to doctors and nurses, a slew of public speaking appearances, mostly at comic conventions (his talk on disability representation in anime was rated the best panel at GeneriCon 2019, and he repeated the talk at Wizard World Philadelphia this summer.)

He talks animatedly about another idea: setting up a small fund to buy pulse oximeters and other vitals monitoring equipment.  “Our bodies send signals that our brains don’t always catch, so we could be ill and not know it. If you have a machine that tells you your oxygen levels are low, that could be the difference between resting at home or exerting yourself and ending up hospitalized or worse. I haven’t fleshed this concept out yet though.”

He also wants to help people with CCHS explain the condition to others. “Stigma kills people and knowledge kills stigma. Our disability is nobody’s fault. It’s not contagious. We haven’t done anything wrong. It’s just the way it goes, dude.”

And he talks about money. Since being elected to the Board in 2015, Nico has worked hard to lead collaboratively and to consult others before taking action. It’s what led to his popular Dungeons and Dragons charity games, which raised several hundred dollars at the last CCHS conference. It’s what led to his “Faces of CCHS” project last November, which was shared on Facebook over one hundred times. His last fundraiser brought in several hundred more dollars.

“We need to make a difference AND get attention at the same time. Good cash flow lets charities steer their own ship; even $10 from a few people helps us go to rich people and say ‘Look, we have all these people participating. They believe in our cause. Will you believe too?”’ and then send them some cute baby photos. That’s a good pitch.” He smiles.

It’s clear Nico loves talking about CCHS and his work in disability issues, but getting to know the man behind the work is frustratingly difficult. I ask him about his hobbies like video games and hiking, but he says it’s difficult for him to find the time for those hobbies: “Sometimes I wish I could finally finish a game, but I don’t go ten minutes without needing to do something or reply to someone.” His lack of free time doesn’t seem to bother him. “Anyone can turn on a PS4. Anyone can read a good book. But not everyone can help a CCHS person or family in need. The work is the important thing here.”

Looking to the future, all Nico sees is hope, the word he has tattooed on his left arm. He plans on seeing a CCHS cure in his lifetime, he tells me. Until then, he’ll keep on making the CCHS journey easier for everyone.

“I think some parents are frightened when they realize their children are growing up in a very different world. And I think CCHS kids are scared by the responsibilities that come with being an independent CCHS adult. It’s less scary when you listen to each other and work together.”

[realsamcalloway]

Now is the Time for Men Survivors to Admit: It Happened to #MeToo

By Sam Calloway

October 2nd, 2018

I, like millions of others in the country, tuned in on Thursday September 27, 2018, to see who Christine Blasey-Ford is; what she looked and sounded like and to see if I thought she was credible. I was also curious to see what Brett Kavanaugh would say, following Ford’s remarks. I, like thousands of others across the country and world, wasn’t prepared for what Ford’s opening statement would do to me.

Listening to Ford speak in her opening statement was rough, as was the proceeding Q&A session, which lasted for hours. Like you, I watched and rode the rollercoaster with her; from her having to relive what little details she could remember and successfully articulate, to answering what her “strongest memory” is. It was at this moment, with the question posed to Ford by Vermont Senator Patrick Leahy, that my own sexual assault memories came flooding back.

To be expected, by those who are at least somewhat educated with sexual assault and rape statistics, the Internet was set on fire with people’s own survival stories. The Rape, Abuse and Incest National Network (RAINN, for short) help hotline received such a huge influx of calls that people were having to be put on hold. RAINN later announced that they had a 147% spike in calls during, and immediately following, the Ford hearing. In the midst of this slow-running and unending train ride that is the #MeToo movement, Ford’s testimony thrusted attention back on to survivors of sexual assault and reshuffled the deck to place victims and their stories at the forefront once more. However, this time is different.

What was on display at the Senate on Thursday, September 27th was shameful, to put it lightly. Using a victim of an alleged sexual assault as a political pawn, without supportive evidence, was a disgrace. Watching old-time, Republican men elect a much younger, female prosecutor to do their bidding, only to scream at their Democratic counterparts across the aisle once given the chance to speak (I’m talking to you, Lindsey Graham). Ford admitted that she was terrified but also that she felt it was her “civic duty” to come forward. With her story, brushed aside especially on the Republican side of the line, America witnessed a true patriot who was about to unwittingly become the face of so many peoples’ own pain and trauma; people who, like Ford, have worked to forget their own sexual assault horror stories.

 People like me.

 Eighteen years ago, I was sixteen years old and the year was 2000. I was a confused teenager—I thought maybe I was bisexual but was beginning to lean gay. I wasn’t out to neither one of my parents and only a few, select friends. At that time, we gays didn’t have smartphones or the apps that are available today, oh no; we had to work to find and make like-minded friends. Around that time, I will admit that I did have some sexual encounters, but never intercourse. I can be honest about that, unlike that sad display we all witnessed by Brett Kavanaugh, the man who claims to “REALLY LIKE beer” but then cringes when asked about sex or blacking out (or sex while blacked out), as if to say to the Senate without using words, how dare you. I am not ashamed to admit it, I was a hormonal teenage boy. However, I would not consider myself promiscuous at that stage of my life, by even a far stretch. (See how easy that was for me, and I’m not even on a job interview. I have nothing to lose, whereas Kavanaugh has a lot on the line and still tried to sell us his devotion to his university studies and his faith, working out and abstinence.)

I eventually met an older guy named Vincent. We spent many days and nights, exchanging emails back and forth. He eventually talked me in to coming over to check out his place. I was scared at first but that quickly went away the first time I got into his car and we headed to his place; he was smiley, very attentive and responsive to my habit of talking too much. He had this weird comfort about him. Keep in mind that I wasn’t officially out, so it was nice to be able to talk freely about things I enjoyed; female musicians like Madonna and Mariah Carey or female-fronted bands like No Doubt… you know, that kind of stuff. Stuff that would have had me automatically labeled “Gay” and laughed at by the boys at my school because it seemed soft or girly and not macho enough. Vincent was my first openly gay, adult friend.

The first time I was over, we did get on the subject of sex at one point. I explained to him, when he had asked if I’ve ever had intercourse, that I had not and that I felt it was special and should be saved for that special someone. I, with rose tinted glasses, explained my fantasy of how great it will be once it is experienced with my first, true love. He said to me that that “was great,” and that it “should be sacred” and should happen “when it feels right.” I appreciated that, and it only made me more vulnerable to him. Not only did I like how cool and hip he was, but I enjoyed the conversation, talking about guys and now, my being open with him about my ideals and how I viewed intercourse as sacred. I hadn’t shared that with anyone up to that point.

What didn’t cross my mind at that time was that I was ripe-for-the-picking, naïve, fresh fruit hanging upon a tree of whimsical innocence. I didn’t even think about how I was fresh meat that had entered the lion’s den… that I was prey, being circled and about to be devoured by a shark. When you’re a teenager who is somewhat socially awkward and out-of-touch, your mind just doesn’t go there. I was more focused on being this open book to him and having him actually listen to me and I anticipated his response and his knowledge. I liked that he was 47, older and out with his sexuality. I enjoyed talking about his life experiences over our spaghetti dinner. I liked when he told me about his time in Italy and when he said lines to me in Italian (he was Italian). I just thought he was cool, and he felt like a safe place. He was also very attractive for his age. I went back over to his apartment a handful of times. In between those visits, we spent a good amount of time chatting and really building a friendship and trust.

I didn’t know then that this was all a part of his plan.

I was his underage, dirty little secret whom he was conditioning to become an easy kill. He was essentially building me up to let me down. The second-to-the-last time I was over at his apartment was when he raped me.

I remember being tired during this visit and if I remember correctly, it was kind of a late visit, about 9:00pm, give or take. I remember that he had a gigantic TV in his living room, with a surround sound system. He had put on a DVD of Madonna’s music videos for me, I laid on the couch and he said he was going to take a shower. Not too long after, he came back out and sat in a chair with only a robe on. I remember he had an erection at one point, and I remember thinking that tonight was going to be the night we fooled around. I remember being excited. We went to bed eventually, shutting down Madonna and heading into his room. I remember once the living room was shut down and before we began walking to the bedroom that it was dark. It was also dark in his bedroom… no mood lighting, just the moonlight, peering through the bedroom window from outside. Looking back at these little details now, if I weren’t so naïve then I would have taken it as a sign, a red flag.

I was laying on my stomach at one point in the middle of the night when I was awakened to him on top of me. I felt him slide his hand down the back of my boxer shorts and I asked him what he was doing. He didn’t say anything. I asked him to stop and to please get off of me. He said it was “too late now.” I then felt him trying to enter me. It was an excruciating, stretching, stinging pain. He eventually got all the way inside of me. It hurt really bad (I’ll spare the details but remember that he was Italian). I remember my mouth being wide open. I remember crying and salivating, but I also remember that I was omitting no noise, like a silent shout of muted cries. It didn’t last long, but it felt like forever.

I remember being numb while I was entered without invite and looking up at the window above the bed and seeing the moonlight that creeped a line of space inbetween the blinds and onto the pillow. I remember smelling his heavy breath on my neck, coming from behind. I remember his groans and his piercing, painful thrusts.

Once it was over, he said “go take a shower.” It was a command and not his typical, seemingly compassionate demeanor that I was used to. In just one moment immediately after being violated, I was downgraded to a meaningless fuck puppet.

I remember crying in the shower and biting the meat of the palm of my right hand to try and muffle myself. I remember watching blood trickle down my right inner thigh and down the drain. I remember feeling like I couldn’t get clean. When I was done showering and dried off, I eventually manned up, opened the bathroom door back to the bedroom, and crawled into bed.

That night and the next day I don’t remember either of us saying anything. Once I was home, I showered again.

And then again. I could not be clean.

 I didn’t tell anyone and for a lot of reasons.

 First, I wasn’t out so how could I possibly tell people I was raped by a man… let alone a 47-year-old man. Second, I felt guilty-- It was my fault it happened because it was my fault for hanging out with him to begin with. Also, I went to bed and had messed around with him, which might have sent the wrong signal so dammit, I got what I deserved.

Two weeks after the rape, I took a bus to his apartment. I don’t know what I thought I was going to do, I guess confront him and tell him how I felt? To my shock, he didn’t live there anymore. The apartment was empty. He had moved. It hit me right then that he was probably a serial rapist and that there were likely other victims. But I was paralyzed in my own guilt and I couldn’t tell anyone because it was my fault. I rationalized that it’d be too big of a burden for anyone to take on… for my mom and dad. Not only was I gay, but I was raped by a man who is older than my parents.

I dealt with this secret, took on this burden and this blame for two years, but not before I began doing coke, ecstasy, acid and abusing over-the-counter medications.

Not before I began drinking hard alcohol.

Not before I began huffing aerosols.

Not before I became promiscuous.

Not before multiple suicide attempts.

During my teenage and early adult years, I didn’t care. I liked that every day was a game of Russian roulette because I had no self-worth and didn’t care if I lived to see another day or not.

For the rest of my life, from age 16 and forward, I’ve dealt with intimacy and trust issues.

That is my story of rape and, unfortunately, Christine Blasey-Ford’s story is my story.

 There are similarities in that my rape was years ago (18 years), where Ford’s alleged assault was 36 year ago. I don’t have any evidence, other than my word, however, like Ford, I would have corroborating witnesses who could attest for my telling them about my rape two years later when I was eighteen.

Because there is no evidence, it doesn’t invalidate my experience.

 To the people who have said that Ford isn’t credible because she waited for 36 years; Saying she “waited” is not a luxury that she was afforded, trust me. She has spent 36 years, based on her testimony last Thursday, trying to forget about her assault by burying it. And when she wasn’t attempting to bury it, she was trying to work through it by sharing her experience with her husband, her psychiatrist and a few close friends.

 I wish that we, as sexual assault and rape survivors, do just wait.

 What Ford did, coming before the Senate and some 20-million viewers worldwide (and those were early viewership estimates), took real courage.

Simply just sitting around “waiting” to use something so vile and soul-crushing would be a gift.

 What we sexual assault survivors really do is hope. We hope that if we don’t give the traumatic experience anymore life, it’ll just go away and suddenly cease to exist. We hope that we will get better and not continue to let our triggers completely paralyze us and/or sabotage us. We hope that our assailants don’t do what they did to us, to others. We hope we can curate real, meaningful connections, both intellectually and physically, with our partners. We hope we can get out of bed and make it through each new day.

While in the grand scheme of things I’m not exposing a potential Justice, who is applying to serve a lifetime appointment on the Supreme Court of the United States, and I’d proudly describe myself to you as a nobody, I refuse to make myself fully believe that. I’ve done that for eighteen years. Sexual assault survivors aren’t nobodies, and that kind of self-deprecating language is only a small part of the many reasons why we don’t report or come forward in the first place. It is a toxic, useless thought that falls under the broad, unfortunate umbrella of what life is like, being a survivor. Considering ourselves’ unimportant and as nobodies comes from a place of self-hatred and worthlessness… a sort of safe place we’ve all been comfortable in for far too long.

We aren’t nobodies and all of our stories matter, regardless of how people will try and water them down or brush them aside as unimportant or small. Or in Ford’s case, where her story is being exploited as politically motivated. Those are all subconscious excuses that become realized by people who are either in denial or have no idea what it’s like to be sexually victimized and violated.

There is never an inappropriate time to come forward with your story. 18 years or 36 years later, there’s never been a better time to transition from a victim to a survivor.

My story matters and so does yours.

To say we “wait” when what we’re really doing is seeking and holding onto hope, is an insult.

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