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.

DRAGON-EXES - THE MOST HIDEOUS SORT

Hey, I can't bitch about my kid's cp all the time.  I've got lots of other things to bitch about, way too many dragons, to restrict this blog to just one.  I think the worst, most hideous, irritating, irrational and obnoxious dragon I am forced to deal with is my ex.  Yech, I just threw up a little in my mouth thinking of her!  If you have one and you think yours is bad, I can guarantee that in a side by side comparison, mine is more obnoxious hands down.  She is a gaping asshole.  A psychotic malevolent mean-spirited bully. And those, I assure you, are her good qualities.  


So now I've been told that my kid needs surgery... and guess who that means I'm going to have to deal with?! Yep, you guessed it. The duchess of douche as Valerie lovingly refers to her. Last time my daughter had surgery I thought I was going to kill this broad. If she pushed the wheelchair, she muttered loudly under her breath that she was nothing but the sherpa. If I pushed the wheelchair, she muttered loudly under her breath that I was excluding her. There is just no winning with her. At least at that time she didn't have custody - because she didn't want custody... because at most she wanted to be a "distant aunt" (her words) because she wanted to go drinking, partying and dating (she clearly entertained fantasies that someone would be interested in dating her) and she didn't want a kid cramping her style(sic). See, I told you she was hideous! I bet she even makes you throw up a little in your mouth.  3 years after we broke up she only wanted custody because I started dating. It was her way of inflicting pain on me. Anyway, for the past few years she's had half custody, something that still sticks in my craw and irritates me every time I think about it. Thankfully, because of the schedule the lawyers devised, I don't have to have any contact with her, as all pick ups and drop offs happen at school.  But because she now has half custody, she feels entitled to make decisions and shoot her mouth off about my child's care and this upcoming surgery. As if I want this malicious psychopath to be making decisions that require more than a scintilla of empathy about the medical experience, pain and feelings of a human being. Really, humans are a whole other species here. The surgery is a month and a half away and we're already beginning to duke it out about who gets how much time and how things should be done. She's emailing, texting and calling me several times daily with questions, comments and whatever drivel pops into her head... clearly enjoying all this access to me. Yippee! Shoot me now.

DRAGON LORE

I don't need to reinvent the wheel. Believe me, I've got plenty to do.  I think this woman says it best, so I'm simply cutting and pasting.  Enjoy

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley  1987

THE "RELATIVE" DRAGON - first post

I wasn't sure what I could possibly blog about that would be of any interest to anyone else (half the time the stuff rattling around in my head isn't even interesting to me).  That of course isn't to say I don't have opinions about things... I have those aplenty.  I just didn't consider my life any more or less interesting than anyone else's.   I barely have time to live my life, never mind write about it.  How do people have time to live their lives and read about other people's lives, especially people they have never met?!  And quite frankly, who the hell cares?!  Through conversations with friends though, I began to understand blogging a little better.  It isn't that anyone's life is more or less interesting.  It's about finding one another through commonalities.  My life is filled with as many dragons as everybody else.  I chose the dragon theme because of the unchartedness of life.  Life throws these dragons in your path and you've got to figure out a way of dealing with them - getting away from them, entrancing them, riding them or slaying them.  Thus far in my 45 years, the biggest dragon I have encountered in my life is my daughter's cerebral palsy.

A new friend and I were talking about "raising different children" (hers has diabetes and mine cerebral palsy) and she said, "oh there must be lots of blogs out there on C.P. just as there are about diabetes! they're so helpful!"  Apparently, in addition to the many blogs, the parent organization for children with diabetes does an amazing job - they send out packages to newly diagnosed families with teddy bears with patches where kids may have to have shots, brochures and informational pamphlets and links to helpful information.  In short, people with diabetes are not alone.  Quite unlike my experience (and every single parent of a child with cerebral palsy I have spoken to in the last 9 years) with United Cerebral Palsy.  When my daughter was diagnosed at 20 months old I called UCP.  I was put on hold twice even though I was sobbing loudly. I choked out the words through snotslurping snuffles, "hi, my name is hali and my daughter has cerebral palsy".  And the monotone response, "Yeah, sure, hold please."  There was no one available to talk to me that day so she took my name, phone number and pertinent information - without so much as acknowledging the fact that I was in a puddle at the other end of the line - and told me that someone would get back to me soon.  6 months later when I called UCP to ask a question (back in the day when I was naive enough to think I could get anything from them, even the answer to a simple question), the same woman answered the phone and recognized my name (not because she cared but because my name is so unusual) and said, "oh gee, did anyone ever get in touch with you?"  Not that she apologized when I said no.  

So anyway, Sarah and I proceeded to pore over the internet, finding a whopping 2 blogs about children with cerebral palsy and neither of them reflected mine or my daughter's experience.  This of course made Sarah sure that I should begin to blog.  Sure, why not?  I'd had her alternately in stitches and in tears with my descriptions of adventures with c.p.  Why not share those stories with others who may have similar experiences? Or at least with people who either need a good laugh or a good cry.

The thing is that I have been hesitant to write about my real feelings (even though I am quite verbose about them in other ways).  Because, well... what if my daughter should ever happen across this blog?  How would she read my words, words so carefully hidden from her?  So, I want to begin with a disclaimer:

My daughter has cerebral palsy.  I love my daughter more than I ever thought it was humanly possible to love.  She is unquestionably one of the absolute best things that has ever come into my life and I think she is one of the most amazing people I have ever encountered.  My feelings about her c.p. are confusing, even to me.  I loathe her disability.  And yet, her disability has helped to form the most brave, funny, thoughtful, spiritual, passionate, willful, determined, charismatic, compassionate (I could go on and on) person I have ever met.  So how can I loathe it?  I loathe the fact that she moves at what my friend Valerie refers to as a "glacial pace", slower than hair and nails grow, snails slither circles around her.  Yet in that glacial pace she expends more energy than it would take most people to move a small mountain.  I am sad for her that she will never hop, skip, jump, run through a field with wind blowing through her hair, dash to the end of a diving board, leaping with all her might, hitting it with the force of her weight so that she can fly through the air for that exhilarating moment while her belly does a flip flop just in those few seconds before she plunges into icy cool water.  I watch her awkwardly lunge about a playground, so out of sync with the other children who are so effortlessly and gracefully running, laughing, climbing, playing, and my heart breaks.  And I loathe her disability.

Let me be clear, my daughter has MILD cerebral palsy.  And let me also be clear that "mild" is a relative term.  I would not even consider sharing these words, these feelings, with parents of children who are in wheelchairs, who cannot move at all of their own volition.  They would laugh at me in the ways I laugh at the parents of able-bodied children who tell me that all 4th graders are slow in the morning.  They would say to me what I say to those other parents, "let me know when you have a clue... talk to me after you've walked a mile (or from the front porch to the car) in my shoes."  And yet, the downward comparison doesn't make me feel any better.  Her life, and therefore mine, are so exponentially different than any able-bodied person that they can barely be compared.  Even though she is considered "mildly" handicapped, we still struggle day by day, minute by minute and every accomplishment is gold medal worthy.

why now

why not.  as pema chodron would say, "start where you are".  so that's what I'm doing.  why this title? well, from one of my favorite books by a favorite author - "here be dragons" by sharon kay penman.  and as she explains, the phrase has its roots in the common practice of medieval cartographers; when a mapmaker had drawn upon all of his or her geographical knowledge, they would neatly letter across the void beyond: here be dragons.  "here be dragons" denotes uncharted territory... and so is life... uncharted territory.  this is mine...