12.24.16

“Nothing you can see that isn’t shown. No where you can be that isn’t where you’re meant to be.” – The Beatles

I woke up this morning to grey skies and pelting rain on this suburban New York Christmas Eve. The dreary weather seemed appropriate to my mood – unable to sleep for days while feeling restless, unable to grasp the concept of joy while feeling existentially lonely, unable to concentrate while feeling overwhelmed, unable to express truth while feeling overpowered.

I floated into a mid-afternoon coffee with my mom, at a quaint French café where they precognitively know my almond milk latte order. I sat at the bistro table, tears welling in my eyes, taciturn, immobile, incapable of forming words from such extreme emotion. I swore I’d stop crying in public. Why am I still crying in public? I return back home, make-up washed away, self-defeated. Not aggravated at the world, but disappointed with myself.

There’s a gathering of friends in the house where I’m living. I hear laughter. I hear voices. I hear cooking…pots and pans clanging in the kitchen. I hear kids running and shooting Nerf guns (they still sell Nerf guns?). I hear the din of many people talking at once, with the TV on NFL football. Those are good sounds. Positive sounds. I allow them in. I join in. I stop crying.

It’s Christmas Eve night, and I’m upstairs in my room. It’s quiet, save for some parental elves finishing up Santa’s work for their little ones fast asleep, drugged on cookies and milk. I turn on my computer. It’s necessary to write. It’s necessary to reflect. I take stock of my year… the three different places I’ve lived, the work I’ve done, the motion, the change, the disorientation and the orientation. But most of all – the people. Those I didn’t know one year ago today, those I’ve known since I was five. Those who have been present, those who have been absent, and those who entered and abruptly exited.

A couple years ago, while I was still able to browse books at The Strand, I picked up a modern dystopian novel recommended by the staff. It was a quick, semi-entertaining read. But, one line from the novel’s ending has remained with me since – drifting in and out of my conscious recognition – as I move through my days and hours. The protagonist proclaims, “Everything ends, and everything matters.” Yes, it all certainly does. So here’s the end of another year. And here are my words in epistles, brought forth from my heart, to all of you. Because all of it… every part of it… it matters.

To my mother: There’s never been another person in my realm who cares as much about me. I always had problems saying I love you. Scared if I uttered those words, it meant you would disappear. You never had problems saying those words. In my illness and in my breakdowns, when all is dark, I glimpse your light to get me through. In my elation and my successes, when all is well, I first share that ease and brightness with you. When I feel I have nothing left to give, you remind me that my existence is gift enough. There is no greater gift a mother can give than that… my life, and her love. And for that, I love you.

To my new family: Charlie in his erstwhile 9-year-old wisdom said it best, “The only things I do not find are the things I lose.” There are no words commensurate to express who you are to me. For what you’ve given me is not just a safe home and a new family, but you’ve granted me a way back to find myself, and an understanding of how to love. You’ve given me the clarity to believe that even when I lose what I thought I’d found, it doesn’t mean all is lost. Your home, your family, your shelter, your hope, your courage, your care, your laughter, your spirit – it’s more than my heart could ever have imagined someone sharing with me. When I question “Where is love in my life?”… I know it is present through you, every day.

To my friends: Whether we once made pencils dance on our desks, dreaded the sadistic chaos of March, accidentally scattered M&Ms all over Hesburgh Library during finals week, drunkenly wandered into oncoming traffic on Bleecker and (um… where were we?) to hail a cab at 2am, downed venti lattes while setting up live events for New York’s media elite, quoted Wes Anderson lines over design deadlines, swapped Paleo cookie recipes, shared battle scars from chronic illnesses, or called each other from everywhere and anywhere to support, listen, congratulate, and reassure… you are all what makes my life colorful when it’s so easy to live in gray.

To my EHS comrades: I’m continually moved by your spirit and your strength; by your empathy and your bravery. From England to California, from Mexico to Maine, I’ve received messages of hope, support, and care, as well as sorrow, pain, and grief – from those equally suffering with Electro-Hypersensitivity and those fighting for environmental health. Within all of those heartfelt and heartbreaking emails, letters, posts, and phone calls, what I sense is a universal intuition between us. An innate understanding. A connection within disconnection. And a will to keep going, no matter what. There is no greater energy than that.

To him: One day, we shall both grant each other forgiveness. Until then, I borrow these words from a poet to send to a prophet…

“I remember the way we parted.
The day and the way we met.
You hoped we were both broken-hearted.
And knew we should both forget.”
– Algernon Charles Swinburne

And to all a good night: It’s nearing midnight. Santa’s on his way (or so says Google’s Santa Tracker). Tomorrow, I will wake up early, to the sounds of my friends’ two kids dragging their parents out of bed, rushing them down to the Christmas tree. I had forgotten that tingly feeling… the anticipation of each ribbon-tied box, the wonder of each new toy, glitter stuck to my pajamas, the warmth of a post-present breakfast. I forgot that sensation existed until now. I forgot that way of looking. I forgot that way of being.

I tell myself a lot of stories. And I write a lot of them too. Stories about my life, my grief, my trauma, my loss, my pain, and my endings. Stories about my patterns and my cycles, my regrets and my shame. But, there’s space in between these stories. There’s light in the confusion of loss, there’s movement in the distortion of transience, and there’s beauty even in the midst of sadness. Tonight, I spied a 12-year-old crawling under the Christmas tree, flipping over gift tags to find his name, beaming when he did, far too excited about tomorrow’s unveiling to get a decent night’s sleep. Maybe that’s exactly what I needed to be shown, in order to see.

 

 

Reservations

“There are several ways to react to being lost. One is to panic… Another is to abandon yourself to lostness, to allow the fact that you’ve misplaced yourself to change the way you experience the world.” – Audrey Niffenegger

Jack Kerouac didn’t have it this hard. He just got on the road.

For me, travel is not that simple. And I don’t mean your typical first-world problems, like: you get bumped from first class for coach; the waiter is rude at Gordon Ramsey’s new hot spot; Amtrak takes 4.5 hours instead of 4.25 hours; the posh urban boutique hotel doesn’t stream Netflix; you queue up over an hour for a cronut; the Uber driver is 15 minutes late, your Marriot Rewards points only secure two free nights in Turks and Caicos; you can’t get a Wi-Fi signal in the remote Tuscan villa. Especially that. Don’t complain to me about that. I would do anything for that.

Because this is what it’s like to travel when you’re Electro-Hypersensitive. These are the mountains I move, the walls I scale, the friends and the strangers I lean on, the concessions I make, and the existential questions I face, all to venture out beyond my hometown front yard.

To start, I beg everyone I know for a car ride to my destination. I can’t take a plane or a train or a bus. Each of those transport icons reduce down to this: a large metal box with electromagnetic fields bouncing off the interior walls. It’s like sitting in an electrified microwave tin can for 5 hours. Nor can I drive myself. I get heart palpitations and zapping pains when I take the wheel. I need to be the passenger. So, I offer money I barely have, to people I barely know – to housekeepers, college kids, high school students, husbands of friends, colleagues. “I’ll pay you $300 to drive me to Virginia,” I offer. I can’t afford more, but I doubt that matters. People turn me down, and it’s not about the money. “I’m sorry, I’m busy that weekend.” Or vaguely, “I’m sorry. I can’t, but I’ll ask around!” (I bet they never ask around). People have their lives, their friends, their families. They don’t want to spend 8 hours in a car driving up and down the East Coast, when they could be home binge-watching House of Cards all day. I don’t blame them. I would likely do the same.

So I feel heavy-hearted as I beg my mother to drive me. My mother who is exhausted at the age of 70, still working a full time job. My mother who has done everything and anything for me, since I was a newborn. I should be the one driving her to a spa getaway. But, I have no way to reach my destination, and no one else to help me. So I ask for her chauffeur services. She consents. And I feel terrible. I feel pathetic. I feel like I’m using her, even though I know I’m not. Even though there is no one else I’d rather take a road trip with, because it’s fun time alone with my mother, time I want to share with her before I move away. But, I also want her to sleep soundly. And I want her to be safe, not driving an antiquated car back to New York on the 95 corridor alone at night. And I want to get to where I need to go by myself. Because I used to hop flights to Chicago on a moment’s notice. I used to book an Acela to Boston to chill with my friends. I used to be an excellent driver (well, except for the parallel parking thing…). I used to be in control.

There’s an inspiring woman with EHS who moved to Green Bank, West Virginia last year, in order to save her own life. I met her mere months ago. Her equally inspiring husband still lives in New York. He tirelessly drives back and forth every few weekends to visit her. So, I may have a ride to Virginia. But, I don’t have a ride back. I call this woman’s husband, and I inquire if he’s perhaps going in my direction back to New York in mid-December. And if so, could I hitch a return ride from the Shenandoah Valley? I’m en route in his journey. I’m happy to pay for gas and tolls. Our schedules actually mesh. Is this a pre-Christmas miracle? Or just the overlapping coincidence of two women with the same functional impairment, and a compassionate man who graciously understands our shared predicament?

It’s a bitch to get from Point A to Point B, and then back to Point A again. But it’s an exercise in zen mastery to find a place to stay. I comb through Airbnb, HomeAway, VRBO, looking for a space that I can rent for a week. I need to disable Wi-Fi routers, power down circuits, unplug electronics, shut the lights, sometimes even shut the heat. I can’t stay in a hotel or a motel or an actual B&B. Every coveted hotel homepage boasts super-speed complimentary wireless internet. Every quaint country B&B now promotes “Free Wi-Fi” instead of “Free Breakfast.” Drive past a shady rundown motel. The dilapidated “No V ca cy” placard hangs by a hinge. But in bright pink neon letters, a new sign flashes to lure late-night bleary-eyed drivers: “Come in. We Have Wi-Fi.”

The first time I visited this friendly Virginia city, it took me weeks to vet my accommodations. After tremendous strategy and a leap of faith, I secured an Airbnb one-bedroom apartment in a large building downtown. Upon my arrival, I unplugged the Wi-Fi and found the lowest EMF spot in the flat to sleep. I gave up the king size bed for a hard Swedish futon, moved it to the far side of the room, several feet away from the wall’s electric sockets, with the patio door open to air out anything off-gassing from their recent renovation. And there I slept for 7 nights. That was how I survived.

The host did not know about my environmental sensitivities. I never look sick to the average eye. And I do my best to play along with the charade. Because I can resume the role. I remember what it’s like to flit about town dressed in my preppy-bohemian best, with an almond milk latte in one hand, and a moleskin notebook in the other (she takes notes… she must be important). But the host did not know I unplugged everything in her apartment for the duration of my stay, that I never used the AC, that I kept the lights off, and that I resided in a self-contained corner save for bathroom trips. Upon leaving her place, everything plugged back in, clean and tidy, she said I was a lovely respectful perfect guest (which I am), and she’d be happy to have me back anytime.

When returning to this city for another week in December, I asked to book her space. She immediately accepted. I knew I’d be sleeping on a hard sofa again, likely with the heat off, because I can’t tolerate an HVAC. But at least I could be safe and self-sufficient. At least I’d sleep and have stamina for my days.

So when this Airbnb host canceled on me, a mere 5 days before my arrival, I stared at her sincerely apologetic email on my screen in sheer panic. She broke up with her boyfriend, so she needed her apartment rental back. This I understand. This type of breakup is traumatizing… The end of a relationship. The splitting of stuff. The division of assets. The return to your singledom. Stepping foot back into your one-bedroom loft after sharing a house – a home – with a man you loved. I feel this pain, this loss. But, I also feel my own survival at risk. There’s no where else for me to stay. So, I offer things no respectable human would suggest to another human… to a virtual stranger nonetheless. Out of fear, out of desperation, out of concern for my safety, I ask if I could pay for her own hotel stay, while I reside in her apartment for the week. She kindly declines – she has a dog, and can’t take him with her. I ask if I could pay for her apartment rental, while she crashes with friends. Again she declines – the dog cannot get along with her friends’ two cats. A feline-canine war is at stake. Last ditch effort, I ask if I could pay to sleep on her couch, and for the inconvenience of turning her WiFi off at night. As I awaken out of panic, resolving to reclaim my self-respect, I shoot a second email 20 minutes later to take back my suggestion. “No worries,” I say, “I’ll figure something out.” Shelter is not something for which a person should ever beg.

I text a friend of a friend who lives in my destination. She’s a kind-hearted Christian woman I met once. I ask if she knows anyone who might want a house-sitter for the week. I try to hide the grandiosity of my illness, yet express that I have extenuating health conditions, making it difficult for me to stay “just anywhere.” And “I’m happy to explain further.” What must she think of me? Such a strange message from an acquaintance… does my illness not have a name? But if I voice what’s actually wrong, if I say the words “electro-hypersensitive,” she’ll think I’m crazy, and no one wants to help a crazy person.

She mentions a friend who is traveling away that same week. Would I dog sit in exchange for free accommodations? I could make that work. But I soon discover the homeowner will be home for the two weekends book-ending my trip. I cannot be a burden to a stranger in her own home. People have every right to their own comforts and technology. But it’s those pleasantries and toys that will hurt me if I can’t shut them all down. And I can’t possibly ask a stranger to sacrifice all of that, just for me.

So I return to Airbnb in a harried flurry. I see a downtown loft available in a converted warehouse. If I can disable the WiFi in the unit, maybe I can find a small corner to sleep, even if that corner is the bathroom. So, I book the week. It’s the only non-shared space left in the city. I drop the address into Google. I need to learn more about the residential building. I find the rental website. And I scan with dread the words “Free Wi-Fi.” Ever the journalist, I call the leasing office, pretending to be a prospective new tenant. I ask curiously about their amenities. I inquire about the Free Wi-Fi. I sound excited about it. I want to know more. “That’s awesome. What does that mean? Free Wi-Fi!” It means Comcast set up a building-wide WiMax for all tenants to share. The leasing agent tells me, “It’s not that strong, so if you want to stream movies, or work from home, then you call Comcast and get you own high-speed internet, phone and cable package in your apartment.” Is this what apartments are doing these days? Hooking up everyone to Wi-Fi with their lease signature?  In twenty years, our public policy textbooks will cite this as a violation of human rights.

I’ve barely moved my body for days, captive to problem-solving the unsolvable. I’m left with these two confounding options. And I reach despair. I don’t know what’s safe. I don’t know what’s sane. I call my mother for the twentieth time in 36 hours. It’s night. I’m crying. I’m exhausted. I’m defeated. I can’t do this anymore. She can’t fix this for me. Do I cancel the trip? Do I give up? This is too hard. This is inhumane.

She tells me to call my friend, the one who lives in my destination city. “Call him. Now. He’ll understand.” I’m silent. I say not a word. She’s dumbfounded, “Alison, why haven’t you called the one person who can help you? The one person who actually knows how to protect you?”

Why?

Because I wanted to figure this out on my own. Because I don’t want to burden him with all my problems. Because he can’t make this decision for me. Because I don’t want to appear weak and needy. Because I want to be strong and self-reliant. Because I don’t want him to know this brought me to tears. Because it’s not his job to save me. Because I’m supposed to protect myself. Because I don’t want him to see that I’m lost…

My mother is quiet. We hang up, silently. I sense her concern, her exasperation. I remain frozen, immobile for 10 minutes, half crying, half numb. Both overly-emotional and devoid of all emotion. My father was a management consultant. A brilliant man, he could step back from any situation and make an impartial assessment, a projection, a plan, and then implement it methodically toward success. Part of this talent was passed down to me, genetically. It’s the part of my brain that thrived in Lit Crit theory analysis… it’s the same part that breaks down ad campaign strategy and graphic design conundrums. But, it’s easy to write a term paper on the sententious culpability of King Lear, or expound on where Coca-Cola fell off-brand. How do you emotionally distance your identity from your own survival?

I make a mental pro-con list. I grasp for the objective facts. I feel my body shaking, and my vocal chords blocked. The movement of my hand to the phone takes 5 minutes. And then I call my friend. I use words like “help” and “need” and “advice” and “confused.” And I feel humble and vulnerable, shell-shocked and stumbling. Because sometimes you still can’t let go, but you trust anyway. You trust because you know you can, while you’re left wondering where you lost the narrative thread to a seemingly simple journey.

I leave tomorrow morning, for the 7 hour drive to Virginia. “Where” I decided to stay is not important to this conclusion.”Why” I am traveling does not matter either. What does matter is: I need to work. Which means, I need to write. But I can’t write, if I can’t think. And I can’t think, if I can’t sleep. And I can’t sleep, if I’m under attack. And I can’t move forward, if I can’t move at all. So I’m moving myself however I can. I surrender to the disorientation. I give myself over to being lost, because who knows what I may find.