Over the past couple of days, I’ve been called a Hero twice. Once by a passing stranger who said, “You’re a hero!” and made some kind of ‘thumbs up’ sign and the second time via an email by someone who knows me well. Both instances were hugely irritating to me and in both cases I chose not to respond. To the first guy, I felt no urge while trying to complete a series of dull but necessary errands to stop and explain why using the “H” word is so offensive in relation to disability, that Heroism has nothing actually to do with living one’s condition(s) in day to day life and that by calling me out that way he was taking a  mental snapshot of me that had more to do with his ignorance and his level discomfort then me as an actual person who shares the sidewalk with him for a minute or two. Not every moment, I have finally come to accept, needs to be a teaching moment. To my friend who sent me that email, I wanted to slap him upside the head and say, “Hey, you’ve seen me happy, sad, bleeding (not all at the same time) you’ve held my baby as he spit up on your shoulder, we’ve had the “language talk” more than once, even if you disagree with me you should know better!” And it’s because I think he should know better that I didn’t bother to respond. Wouldn’t you know it, a couple of days after reading the “H” word, my friend sent me another email, a brief one saying that he hoped his last email didn’t offend me. Okay, so maybe he did learn something.

After the thumbs-up guy had long since disappeared down the street, I got to thinking: What if I actually said, “Yes!” to everything that people, well meaning bipeds included, actually said to me during the week. My usual mode of being while walking is to politely decline the many offers of assistance that I receive, UNTIL I actually need help—like when I fallen and yes, can’t get up. To all the other statements that come my way, I generally make some kind of contact, a smile, nod, and keep on moving. The exception to this is children. I will ALWAYS stop and talk to a kid who wonders aloud about my crutches, scooter, etc, and try to come up with an age appropriate response, even if it makes the accompanying biped parent uncomfortable.

What if I said Yes to everyone? Would there be teaching moments for me? Would I learn about the fundemental desire in most people to do good deeds? Would I become more grateful? Would I make more friends?

Here a list of the questions/statements that I get while walking/scootering during any given week:

Do you need help?

Can I carry that for you?

Can I get the door? 

Are you in pain?

Can I carry you up the stairs? (Oh, I would love to yes to that one just once. Hi-jinks!)

You must be very strong/ You must have very strong arms/ You do really well don’t you?  I like your hair/glasses/purse/earrings.

I want one of those! (scooter—or sometimes I think they mean Ethan. He’s mine. They can’t have him.)

Can I get a ride?

Take your time!

Let her do it herself. She wants to do it by herself. She likes to do it by herself!

You’re  a hero.

You’re an inspiration to me. (A very nice woman who works at the Y where I workout said this recently to me, as leaving, walking down a flight of stairs. I had to take a deep breath and stop myself from seizing the teaching moment.) 

Let me get that for you.

He looks just like you.

Would you like this chair?

Do you know where you’re going?

Having lived in NYC for so many years, I know that sometimes, just making eye-contact with someone can give you just the boost you need keep going. Even the interactions that  drive me crazy usually give me something worth remembering. There was a time when my younger, brazen self would fall on purpose in front of a good looking biped just for an opportunity to CREATE a moment. Woody Allen help me up once as did Wally Shawn but I swear I didn’t fall on purpose. 

I probably don’t say yes half enough, I’m so hell bent on Independence and everything that word implies. Maybe I could ease up a little. OR NOT, I don’t know. May it just depends on how I feel on any given day. I have one wonderful biped friend who often says when she’s with me, “I’ll only help you if you ask me.” I love her for saying that to me. I love that she watches me bend down slowly to pick something off the floor and then she goes back to her Ipad. 

E’s first grade school production is coming up in a few days and while he’s slightly miffed that he doesn’t have a speaking part this year, he’s still excited to getting dressed up to look like a Billy Goat Gruff and having to sing and dance, as he says, “at the same time, mommy.” I’ve asked him to sing me the song but he refuses. I’ve asked him to show me the dance but he only looks at me aghast. He does tell me that he needs a pair of grey pants with a grey shirt in order to look more goat-like. He says:  ”You won’t be able to tell it’s me because I’ll be wearing a funny hat.”

“Okay,” I say.

Every other day or so he asks me if I’m going to be there. By “there” he means his school auditorium which has as I remember from last year, has a lovely, inviting stage at the front of the space. Last year the moment the kids appeared from behind the curtain, I bawled and hiccuped and am resolved not to be overly-emotive this time around, but I may bring a fist full of tissues just in case.

“Are you coming on your crutches or  your scooter?” He asks me.

“I don’t know yet.”

“If you come by scooter you’ll have to sit in the back but if you come on crutches you can sit anywhere.” He pauses and adds, “but I won’t be able to see you.”

“I’ll be there,” I tell him.

The school productions are part revival meeting part rock concert. Parents dance in the aisles, take pictures, call out to their children. 

“When it’s over I want you to bring me a red flower.”

“Do you mean a rose?”

“Yes, a rose.”

“I can do that.”

“After the production,” he says, “we’ll go to the cast party.”

The show is always followed by a small party in his classroom, plates of mini cupcakes and bowls of unsalted pretzels abound. Parents serve food and take more pictures. “And then after Early dismissal I want to go to S-burger for a burger and fries.”

“Won’t you be full after the party?”

“At the party, I’ll only eat one mini cupcake and one juice box so I won’t be full.”

“A burger after school… that sounds good.”

Ethan nods, pleased at my reaction.

Give him a little bit of structure and Ethan thrives. Recently he brought a little two minute sand timer home from school and now he uses it when he takes showers. Two minutes to wash six minutes to play. Not a bad equation to live by. 

I belong to several disability-specific online groups and I’ve learned that there’s something satisfying about being able to communicate with like-minded (or like-bodied) people who might not have the opportunity to meet or talk. I like to be able to chat about the particulars of my disability experience  without having to explain what the heck I’m taking about because the PWD’s I’m talking to already have the same frame of reference. There is strength in numbers yes and in the simple idea that groups members can easily relate and support an individual’s experience.

Recently in one of these groups participants talked about how they felt old in their bodies. Most of the comments were made by people in their early twenties to thirties. When I read the comments I found myself nodding in agreement. As a person with a mobility disability there is the sense that day after day you must push your body to the limit, fight spasticity and gravity, work hard to complete tasks that many people take for granted. Once and a while, a new day begins and it feels as if the weight and wear of fifty years has slammed down on your body without warning or permission. You lie in bed debating whether staying in bed would even help the exhaustion you feel. (It usually doesn’t.)

As I read the comments, and added a few of my own it would’ve been so easy for me to be dismissive, sarcastic and say something like: Hah! I got twenty years on most of you! Just wait til you get to be MY age! Then you really feel OLD in your disabled body. But I held back. Instead I thought about how when I was younger, I often pushed my body too far in an effort to prove that I could succeed in an able bodied society that expected me to keep up. “Aren’t you just like everybody else? Don’t you wanted to be treated like everybody else?” Yes, said I, the young supercrip. The older PWD says, “Yes, but…my Body is not like everybody else’s… And who is Everybody anyway? To me now, any response to these tried and true questions seems too simplistic— hardly able to address the ignorance built into the question or the actual experience of the person who responds.

To my fellow PWD’s who wonder what OLD is gonna feel like 2O years from now, based on only my own experience I can say that you will discover reserves of strength that you never knew you had and that these reserve will serve you well. There are days when staying absolutely still is just fine and can in fact, be instructive. There are days when all you can do is draw on the reserves of other people—always a tough one for me, my tendency is to be Independence crip and withdraw when things get tough.

As I round the outer-edge of another decade part of me is proud that I made it this far, part of me kicks myself for often feeling like I haven’t accomplished enough (I battle my inner check-list) and yet another part thinks:  how did it all go by so fast when this body, my body moves so slowly? Maybe on any given day the best that I can do is be respectful to all of these parts, let them wrestle and pin each other down I as wave  from the stands and slurp my iced coffee. Or maybe I’ll fire up the computer and tell a tell a quick story  just so I can imagine the PWD’s in cyberspace nodding in agreement.

The thing that struck me after the Zee wore off and the fog lifted was what the doc said as I was leaving his office:  He said, “It was a pleasure” and he shook my hand. An ordinary comment, a common enough gesture but how often does that happen after a routine gynecological exam? Not bloody often I suspect, but can we really call my exam routine? First, the examination table that lowered and raised is in itself is reason to celebrate. Having the right equipment present reduces stress and eliminates the need for drama:  no calling in the support staff and the guy off the street to heave me up where I belong. And then there was the dialogue. We actually talked, Dr. M and I—he wanted a detailed cp history and a conversation about proper positioning, what, he asked would work and not work? I could see that he was ACTUALLY ENJOYING figuring out how to make this appoinment fruitful for both of us. The time we took now would make my next visit easier and faster.

Not to be too self-congratulatory about all of this, but an appointment that goes the way  it should serves as a reminder for all the ones that didn’t.  Do I blame attitudes and ignorance of medical staff? Yes and we all know the problem runs deeper:  How much disability awareness training do medical professionals receive in school? A couple of hours? A single course? Is it taken for granted that doctors know how to to talk to us just because they’re doctors and we’re in need of repair or at least proper maintenance? What I need from any medical professional is a willingness to listen and to trust that I know the quirks, the ins and outs and the experience of my “cripness” better than anyone.  I hope that I’ll  get to the point in my life when a successful doctor’s appointment  is not a cause for celebration but just another task completed in my otherwise ordinary day.

As a person who lives with cerebral palsy, every once and a while it’s necessary for me to take muscles relaxants for specific events, like medical appointments that involve more mobility than simply sitting in an office and talking to doctor. Under the guidance of my trusted neurologist, I take pills for “special occasions” the way that other women might buy a new dress:  You buy it, wear it once and then put it away until you need another dress for the next event. Of course there are many of these types of drugs on the market and in an effort to give my ever- so- tight “cp-ness” a break once and a while, I’ve tried many over the years. The one that works for me let’s call it, Zee, is tiny, round  and looks harmless enough. I take it an hour before my appointment and then when it hits my brain, when it hits, I am, for the rest of that day, lost, utterly gone.

Zee is my brainf**k. On it, my brain is awash with endorphins and the promise of sleep and deep, deep relaxation. On it, my pelvis unlocks, my stride is longer, my back stops hurting and my shoulders sing. On it I don’t fight my body. Zee makes me loose in a bipedal way, makes me think this is what it must feel like for an able -bodied biped to move. And I want that feeling all the time. I want it bad. I think, why don’t I just stay on it, take it three times a day like it says on the bottle? I can live free of my spastic discomforts, the tightness that defines me. Why the hell not.

On Zee, all I want to do is sleep. Oh it feels so damn good to sleep. Just let me lie here. I’ll get to my life next month. I also struggle to stay awake, I can’t think clearly, coffee makes no difference, I can’t write a single word and I certainly cannot shepard a child through his day. On Zee I don’t function.

This gets me to thinking about all of the people who have no choice in the matter. They must because of their physical disabilities,  their illnesses, their psychiatric disabilities live on a daily cocktail of medications, that delicate balance that allows them to get through a day and maybe have a day worth remembering at the end of it. They are brainf**ked without their version of Zee. And yesterday, as I headed in a cab to doctor’s appointment fully zee’d and zoned out, I thought of us, PWD’s all, on our various essential regimens. I raised my pillbox in a salute as I plotted out how much coffee I’d have to consume for the rest of the day in an attempt to remain concious. All of this thought and planning for just one pill and one appointment. At this time in my life I can choose my tightness, the spazzy-ness, that is me. I’m able to choose to be alert and available. It’s a trade-off I can live with for now.

When I arrived at the doctor’s office I  was quickly told that the appointment was cancelled, the doctor had called in sick and could I please come back in two days when he returned?  Oh yes of course, I said. Brainf**ked again, I thought. The bottle of Zee napping in my pocket, awoke and laughed out loud. I heard it. 

Here’s something I wrote on another website that I’m putting here because it captures exactly what I was feeling in the moment.

Yesterday I walked from the Y to my local Starbucks. It’s about 4 blocks. I took my time. I enjoyed the snow. I was wearing disability-friendly weather appropriate boots. During my fifteen minute trek, seven bipeds asked me if I needed help. One of them who was young enough to be my daughter called me Sweetie. I could only conclude from this continuous solicitation that I must’ve failed to notice that my hair was on fire.

As the snow flies I sit in companionable silence with Ethan in our orange kitchen—Me on the computer—he—on my ipad playing yet another round of Angry Birds. My reasoning is: today E engaged in a long dialogue with the man who came by to confront our “mouse problem”, E played heartily in the snow, he ate a good lunch, so passing some time with boomerang bird while I whip up another post seems a good thing. We like being in the same room together.  The cat’s in the kitchen too ignoring the mice who are apparently busily making a home underneath our fridge.

I’ve noticed a theme emerging from my recent batch of blogs. As the snow continuous to swirl insuring that I’ll be staying inside for the next several days—crutch tips and ice don’t mix, I read through my entries and notice a theme of wanting to escape, to transport myself somewhere else is quietly pushing through the surface of my words. I’m walking in New York, thundering down a road in my adapted car or wanting to at least. The other day I found myself googling the words, “Fastest mobility scooters” and “writing retreats, Paris.” 

Paris. Writing. These words have a ring to them when placed side by side, non? I’ve investigated every single website that advertises a Paris writing retreat. Most of them are about a 5 days long cost, on average 1200 dollars excluding airfare and accommodations. Many promise structured classes in the morning with a bit of sightseeing in the afternoon. The classes appear to me unnecessarily intense and tiresome. “How to market your book. “Publishing House vs Self-publishing” debates and so forth. The photographs of these classes are shots of people sitting around tables looking tense.

All I really want to do in Paris is sit in cafes and write. Yes, I’d visit the Louvre and the Eiffel tower, but what I want to do is write. In cafes. Pretty much what I do in lovely New Jersey but you know, I’d be somewhere else, IN PARIS. I’d sit in a cafe, preferably outside, in the off-season, drinking good coffee and let the language, another language fill my ears. Fill my eyes with unfamiliar faces. I love cities. I love them the way others relish the possibility of new lovers. 

Recently, I mentioned this idea to my husband. This idea of finding a way to finance this trip, taking a few days to myself and going. He looked at me with a straight face and said, “Why would you want to sit in a cafe and write when you’re in Paris?” As if this was an insane idea, a waste of a good opportunity “touristique.” As the words tumbled out of his mouth so innocently, I realized that there is a kind of madness in our marriage, that this man who has been around me almost constantly for the past ten years, hardly knows me at all.

I’d be happy going with one of those tours that are populated by little old ladies, the ones who travel in packs, wave at them as they board their tour bus. And go and write.

Maybe I’ll go on my own. Get a recommendation to a good accessible hotel ( I hear these are hard to come by in Paris) and make my own schedule for 5 days. That’s a lot of coffee and if I’m lucky, plenty of words.

Maybe I’d take E with me. Yes, I’d bring him. We’d sit  at a cafe, he with his hot chocolate and my ipad me with my computer and coffee. We sit in companionable silence until we decide it was time to go, on my new and nimble scooter, speed to the Eiffel tower and look up.

I realized recently, as I was coming out of my post-driving fog, that I’m not likely to be getting a conventional job any time soon—so I’d better do everything I can to put myself out there, on my terms in a way that fits my talents, my disability, my experience and my schedule. 

Just writing that sentence feels like a lot of work but here’s my truth: The best way for me to work toward financial independence, and yes pay for all my future car services, is to write my way out.

Write my way out. Write my way forward. I come to the same conclusion every couple of years and every couple of years I let life get in my way, car accidents, child care, driving lessons and trying to get all the small tasks of life keep me from what I’m good at doing and what in fact, makes me happy. Writing makes me happy. Many occupations bring me satisfaction but writing is what makes me happiest.

The reality:  Life, daily life takes time. I have disability. Daily life when you have a mobility takes more time. I’m slower BY DEFINITION. This year I will not beat myself up for the extra time that everything takes, I’ll do it anyway and ask for help more often Why spend an extra hour trying to get  my shoes on when my able-bodied spouse can put them on my feet in about 60 seconds?

The plan: I need structure—I’m starting two, count ‘em two, writing groups. One is script writing group to ensure that I’ll finish a new play this year and the other is a Finishing Group called, ‘Last Draft or Die’ (L-DOD) to finally complete the last draft of my memoir and actually follow through the pain-in-the-ass process of sending it out and yes, getting it published.

This year is the year to remain steadfastly optimistic, damn it!

Recently, I finished a intense two and a half month experience as a Writing Coach working with one client, day after day until her project was done. This was an exercise in patience for me but it also served  as a reminder that there is more work out there to be had, and money to be made as a Writing Coach. Time to finish my website, advertise my skills and rates and get on with it.

The goal: I’ve never been one who swore by New Year’s resolutions. Resolutions always seem to be short lived and not quite real. Having already faced the reality of my limitations once this year, I’m ready to write my  way down a new road and actually trust what my talents and abilities can bring to a new, unforeseen destination. Enough wallowing. I’ll write my way out, up and over. If you see me on the road remember to wave and offer me a lift ‘cause most likely, I can use one.  

I pulled the keys out of the ignition and as BIg Ben my driving instructor rambled on about one thing or another, I started to cry. He noticed and got quiet. I hadn’t been behind the wheel for a month and this time, at my 18th lesson I couldn’t find my bearings, my driving was erratic, my turns were choppy, it was as if I had forgotten everything from the previous six lessons. This time when I nearly drove off the road onto an embankment, I was able to make the correction but if any car had been near me, we would’ve been in trouble. Ben knew this and so did I but neither of us bothered to mention it.

Big Ben asked me the same questions he always puts forth when we’re back at Kessler sitting in the car. “How do you think you did? What worked and what didn’t? And the final kicker, “What’s holding you back?”

We’ve been puzzling over the that one almost from the beginning of this adventure. Is it fear? My CP or  the CP related drugs I take? My hyper focus? My lack of focus? My response time? My delayed response time. After eighteen lessons I can safely say that neither Big Ben nor I have any fucking idea. For what ever the reason I am not progressing, or I mean, I have progressed, but, more accurately, I do not drive consistently. It’s driving me crazy. It feels as if I’m caught  on a treadmill and I can’t make the machine stop, I’m trying desperately to find my balance even though I know I have no balance—If I could just catch up and hold on and keep going or stop.  

I dried my tears, gave Big Ben the keys and told him I would be there the next day for another lesson.

I woke up in the middle of the night thinking:  What’s holding you back, Katinka?  The least I could do for myself is come up with an answer.

I know that CP, spastic cerebral palsy or how it manifests in my body means that it tightens my muscles, makes me move more slowly and affects my hand/eye coordination. It’s why I have can’t catch a baseball if my life depended on it, why, when I try to walk like a biped (one leg after another) I must take my time. It’s why when I make love I am not a speed demon. It’s also why I’m a good listener, because I naturally take the time to hear through the words, it’s why I write, it’s why I can have long, weirdly detailed, convoluted conversations with Ethan or anybody else for that matter.

So, in the middle of the night, with the porchlight from my neighbour’s house pouring through my bed room window I realized that NOTHING WAS HOLDING ME BACK. In fact, my cp body was doing what my body always does, move more slowly, and yes, react more slowly, improvise in whatever way it,—I— can to stay upright and keep moving.

The question really is why was I expecting  this experience, learning to drive, to be different? Why was I insisting on measuring my progress by some able bodied standard that has never applied me to me in the first place? Everyone else can drive, many PWDs drive, so why can’t I? When my body wasn’t doing what it “Should” be able to do, I whined, I wondered, I cried. At this stage of my life I wasn’t expecting to have to relearn the lesson of Self Acceptance yet again. I thought I’d motored happily past that disability sign post a long time ago.

After my midnight ruminations, I resolved to go to sleep and make a decision about whether to continue or not in the morning. 

I woke up without a definitive answer. Para-transit picked me and dropped my off in front of Out Patient Services at Kessler and I still didn’t know. I waited for Big Ben for two hours, I asked to speak to him, I followed him down the hall to his office and it wasn’t until I was sitting across from him that the words finally came out. Of course, I had to start crying again, but this time I gave him fair warning. —I told him that after 18 lessons, thousands of dollars, and many hours I thought it was time for me to stop. Full stop. I doubt my answer was actually that coherent but he got the gist.

I dried my tears, thanked Big Ben, called a cab and went home.

Having made this decision, I’ve been wandering around with a bit of that sad, foggy feeling. It’s what comes when you let go something you really wanted, a job, a relationship, an idea, something you’re certain was yours anyway. I had dreams attached to the idea of driving: to be able to tote Ethan around with much less hassle, to drive to a conventional, work- at- the- office job and it goes without saying, to escape to the city.

I know the fog will lift soon enough and I’ll find away, another way, to fill the the space where “YOU ARE THE CAR!” was living. Let’s be real:  It’s a punch in the stomach, or to my ego to realize that even after all these years there’s a part of me that wanted to live just a little bit more in Biped World, wave at them, from the next lane behind my perfectly adjusted hand controls in my snazzy well appointed vehicle. 

Do I believe that I can learn to drive?

Imagine me:  I’m in a custom designed program that encourages me to take lessons every single day without fail for at least three months, a “Driving for Crips” boot camp if you will. For the first month I’m on a closed course with no distractions. Sitting next to me is an attractive, sensitive driving instructor who wants to know, he needs to know every detail about my body and he finds it all so fascinating and we’re driving and…. 

Funny, the things you miss. Even after six years of living in my little NJ suburb, I still wake up from the same dream: I’m  taking a long, late at night walk, alone, somewhere in Manhattan. For all the years I lived in NYC, I took many walks at night because I loved that purplish glow of the the city, I loved the relative calm of the city at night—there was more room to move and I loved, most of all, that I could feel like I was a part of the night-time throng without feeling compelled to interact with it. There’s something about New York aloneness that isn’t the least bit solitary. These days I barely stay up later than my six year old and while I do go for regular late night walks in my neighbourhood they feel more desolate—empty parking-lots and badly lighted, broken sidewalks. While plenty of cars go by, I don’t encounter many people—I miss that New York energy  that life force that I believe actually emanates from people’s bodies as we pounded the sidewalks and went past one another, usually without talking.

It’s so easy to romanticize my life before the suburbs. Before children and curmudgeonly husbands, before unemployment and before I started  feeling my age. It’s easy to want to go back when even something as simple as a walk held such promise. When I told Ethan that I was moving back to the city when he turned eighteen, he looked me directly in the eye and said, “Can I come?”

“Of course, you can come, I said, “It wouldn’t be fun without you. It’ll be you and me in the big city, you’ll be a street-smart kid who loves math and the arts and I’ll finally get something published and…” and off I go dreaming again.

I’ve been thinking, (day dreaming) lately of catching a train after my son goes to bed. I’ll take a train into Penn Station, walk up out the ground and go and have coffee somewhere, just to watch people walk by.

Or maybe I’ll walk with them for a little while.

(photos by Andrea Reese. To see more amazing shots go to andreareesephotography.com)