WHEN DRAGONS COLLIDE

Wow.  Thats about all I can muster. My superstitious fears that I deserve this or did something to bring it on are overpowering. I've always been one who lived by the "whatever you surround yourself with is how your life will go" kind of mentality. And so here I've been spewing negativity and sarcastic rage into the Universe and seemingly it has come back to bite me in the ass. Big time.

On Wednesday afternoon November 17th at approximately 4:15PM we received the phone call. Emily (my spouse) has invasive ductal carcinoma - breast cancer.
{cue screeching tires and crash}
Hope, fear, dread, crying, laughing, insanity. All so surreal. We're one minute wailing sobbing and finding ourselves the next walking through Job Lot of all places listening to cheesy Christmas music (it's the most wonderful time of the year) looking for luggage, fielding calls from oncology social workers, preparing for our trip to St. Louis for Thanksgiving next week. When we got that first call and the doctor told us that Emily had breast cancer (there, I've said it twice without falling completely apart) we asked if we should cancel our trip. To which the doctor replied, "no no. just go and enjoy your holiday." Did I already use the word surreal?

TO PARK WHERE DRAGONS PARK

I loved this article written by Geoff Edgers in the Sunday Boston Globe magazine.  Its title was "Access Denied" and it ran in 2007.

In 12 years, Blue Man Group has played a few thousand shows at the Charles Playhouse, as part of a company that, conservatively, pockets $2 million a week. But there is another, more important number you should know: Twenty-six. That’s how many stairs you have to climb to watch the paint-spattering baldies in Boston. A woman in the box office told me this on a recent afternoon. What’s odd is that I was sitting in front of her in a wheelchair. Wheelchairs, incidentally, don’t do so well on stairs. "We can get you carried up," she offered cheerfully. "A lot of people do that." 

How dignified. And how virtually impossible for someone like Brian Moore, a 22-year-old Boston man who uses a heavy, battery-powered chair as the result of muscular dystrophy. "All his muscles have rotted out and he’s taking steroids that make his bones brittle," says Jim Moore, Brian’s father. "Even when we transport him, we have to use a special lift to keep him from breaking his arms and legs." 

Twelve years ago, I took a wheelchair out for a test drive through Boston, as part of my own unscientific study of the city’s attempts, or lack thereof, to comply with 1990’s Americans With Disabilities Act. Since then, I’ve found myself making mental footnotes as I see the best, and worst, efforts to get up to speed. Recently, with Brian and others in mind, I figured this was a good time for an update. Bear in mind, my experience, no matter how annoying, was brief. I can walk. The point was to get a refresher, up close, on how the city fails to be accessible to all. 

Three snapshots from my day on the town: 

A minivan with a "This Heart Loves Jesus" sticker is parked illegally on Court Street, blocking the ramp to the curb. I try anyway, and my wheelchair topples, soaking my leg in a puddle. "It’s so hard to park," the driver explains as she emerges from Staples, pleading with me not to give her a ticket. She scoots off, not giving me time to explain that I’m a reporter, not the police. 

I get stuck momentarily in a section of loose brick near City Hall. Brick, as those special people in the Fenway Alliance love to remind us, is such a wonderful aesthetic touch. Just try riding a wheelchair over it. 

At Locke-Ober, I arrive to sample fancy-schmancy chef Lydia Shire’s cooking. Instead, I’m confronted by two granite steps. The man at the door offers me the name of a manager to contact to complain. I would have preferred the soft-shell crabs. 

None of this surprised Bruce Bruneau. He was my guide back in 1995. When he was working, Bruneau was the trailblazing watchdog in the state’s Office of Disability. Now 59, Bruneau’s off the beat. He sounded discouraged. 

"I thought I could make a change when I started doing this," Bruneau says. "I was wrong." 

During the day, I found too many places without curb cuts, making the sidewalk a dead end for anybody in a wheelchair. I found steps blocking my way into the best restaurants and most basic coffee shops. Just try figuring out which T stations have an elevator. Want to get out at Government Center? They’re working on it. 

John Kelly, a local wheelchair advocate, told me of one of his least favorite spots, a warped stretch of sidewalk on Huntington Avenue near Symphony Hall. It was never installed right. The Massachusetts Architectural Access Board agrees with Kelly. Since November of 2005, it has been fining Boston $500 a day until it fixes the area. Despite the city’s appeal, the fine stood at $325,000 at press time. 

"Nobody knows," Kelly complains. "It’s barely been in the papers." 

Back to the Charles Playhouse. Just to get into the box office, the cashier had to open a door in the neighboring Shear Madness space and get a construction worker to push me up a crumbling, too-steep concrete ramp. Inside, after nearly selling me a ticket, she mentioned the 26 steps. I didn’t make a stink. For one thing, I needed her help getting back out. 

"Well," I told her, "I’ll pass for now." 

"You can always come back if you reconsider," she said, and smiled.

WHAT DOES A DRAGON DRESS UP AS?

I hate halloween. There, I've said it. And you can think of me what you will - party pooper, kill-joy. I don't care. I have a kid with a disability and halloween stinks. Where should I even begin? So halloween was two nights ago and while most children are excitedly running around the house and putting on their own costumes, my 11 year old is being dressed by me. It is bad enough I need to wrestle with her on my none too clean floors each morning struggling to get on socks, braces, AFOs and shoes the size of gunboats. But to have to do it all again in the same day is just unfeasibly unfair. And mind you, I'll go back to the "relative" thing and say again that my daughter has "mild" c.p. She mostly dresses herself (a sight to see as she manipulates her legs as if they belong to someone else and rolls around her floor). I know other kids have it worse, can do less, but again, that downward comparison doesn't make me feel one iota better.  It just doesn't do it for me. The reality is that I'm still working up a sweat every morning, twisting, writhing, struggling, swearing. But I digress.


Back to halloween. Luckily this year's costume wasn't very involved. Those costumes that require lots of bulk or straight lines, cardboard, masks, gloves or swords are a recipe for disaster. My daughter has enough trouble managing her own body and the various accoutrement that she requires in order to navigate her way from one place to the next.  On top of that, she has no sense of balance at all. Her brain doesn't realize when she is teetering and the ground is quickly rushing up to meet her. She doesn't know that she is falling and therefore doesn't know to put out her hands to stop herself.  She generally stops a fall with her face, which by then is way too late. But she has had this same body for 11 years now and has, after hundreds of thousands of hours of rigorous physical therapy, finally figured out how to keep herself upright (at least most of the time). 


An aside: I went grocery shopping one day with my daughter not too long ago and was lamenting mostly to myself the fact that I had to make so many trips into the house. My daughter happily and cluelessly offered to help. Not to burst her bubble and wanting to encourage her helping others, I carried her and her crutches and a bag of Wonder bread (yes, I love Wonder bread - one of my guilty pleasures) and got her to the doorway of our condo. Then I ran back to the car to scoop up other bundles. I heard the expected crash before I'd even gotten to the car. Used to such things, and since I didn't hear any screaming, I meandered my way to the car, got a few bags of groceries and then, bundles in hand, I made my way to the house, where I found my daughter sitting up in the doorway clutching a mangled loaf of bread. She said, "don't worry happy, I'm fine. The bread threw off my balance." And lucky for her that big soft loaf of white bread broke her fall. Thanks for the help though honey. But seriously, the weight of a loaf of Wonder bread threw off her balance?!


Anyway, I digress again. I feel as though I get smarter every year. Not smarter in the way of real actual life. But smarter in the way of navigating life with a child with cerebral palsy. I so wish ucp had a clue. Why should I have to reinvent the wheel at every turn? Is there no one with a child similar to mine but a few years older?! With parents who might be willing to share some of their hard earned triumphs in the day to day struggles? 
So this year's costume was... clothes. Regular plain old clothing. With some fabric paint on the front to look like bones - she was a skeleton. Perfect! Thank goodness for my creative talented crafty spouse! It was the perfect costume in so many ways. It was warm enough (we used long underwear), not bulky, didn't restrict her movement, allowed her body to be in whatever position it needed to be in, allowed her to be in her wheelchair or use crutches, was "halloweeny" enough and didn't throw off her balance! What could be better?


Well, curmudgeon that I am, I have a list of things that "could have been better". It is hard enough to navigate a wheelchair along city streets and sidewalks in the light of a warm summer day. It is nearly impossible to do on a cold nearly November evening in the dark. Is that a curb cut? Oops, sorry honey, I didn't mean to launch you from your chair. 
Because trick or treating is a longer trek, we used the wheelchair. But to get up to people's houses we also had to have along the crutches. And don't forget the bag for candy! The monumental effort to get the stinking bite sized snickers (which she doesn't even like) would leave me screaming, "fuck this!" for lack of a more lady-like phrase. But not my child. Plodding on house by house, out of the chair, adjusting the crutches, slinging the candy bag over the crutch handle, slogging her way along. Do you think these morons would come out of their houses once they realize my kid is struggling to get out of a wheelchair at the bottom of their front porch stairs?! Nope. They stand, bowl of candy in hand, holding open the storm door, barely leaning out. Meet her halfway for the love of Pete!  
But people are so unaccustomed to seeing handicapped people, especially children, they freeze in that awkward not knowing what to do fog of stupidity. Halloween makes it worse because... are those crutches part of the costume? Are they swords or light sabers or actual crutches? Do you think the other children, all dressed up and hyper, pushing, shoving, eager, blinded by masks and hampered by ghoulish titillatingly scary surroundings even notice my daughter struggling? Do you think their parents, watching from afar, meandering slowly along the sidewalk, chatting distractedly with other adults, call out, "hey johnny, watch out for the handicapped kid! you're knocking her down the stairs!"? Does one single child or adult stop and notice, make way for my child, let her go first? Candy is involved pal, no way. Every man for himself. In that way halloween is just like every other day. Only more so.


And this year my daughter used up so much energy, worked so hard, exhausted herself so much, that she ended up physically sick - fever, chills, aches, pains - and missed school the following day. Hooray for halloween.