I have moved over to WhittereronAutism.com. Please follow the link to find me there. Hope to see you after the jump! :)

Sunday, January 13, 2008

Russian Roulette

Many people consider a diagnoses of autism to be a curse, a curse more dire than cancer. My knowledge of medical matters is minute, but I now know for certain, that there are many other diagnoses that make autism pale into insignificance. One diagnoses that I wouldn’t wish on my worst enemy, assuming I had one, an enemy that it to say, would be Malaria.

So lets say that a great being from on high offers me one wish, wipe out autism or eradicate Malaria, mine to choose. Malaria is a disease that steals children away from their parents in their thousands, in a hearse or a funeral pyre, a permanent solution.

Family members gather from the four corners of the globe to celebrate the wedding, a blissful oasis of sanity in torrential British Rain.

Less than 24 hours later, I awaken at 2:55 a.m. on the morning of our departure. I check the children. Everyone is asleep. Maybe I am a nervous traveler. I conclude I am nervous. I acknowledge that I am a traveler. I examine the floppy underside of the four poster bed’s canopy, threadbare and suspended by thin rusty wires that will mark the fabric in a month in this cool, damp atmosphere. Who in their right minds could attach a stick to each corner of a mattress, throw a sheet over the top and cal it a four posted bed? I focus on other real and imaginary faults in our hotel room, as there is nothing like a good moan to make me feel oh so much better. I refuse to think about the impending disaster that is about to unravel until I have concrete facts not conjecture. I concentrate on irrelevant trivia instead.

Our goodbyes are hurried and harried as we head off for Heathrow at four in the morning. The children doze and sleep during the five hour drive. “They’ll be awake on the flight now!” I moan.
“It’ll be fine,” he coos glancing away from the chevrons on the motorway as we creep our way along the three lane super highway at 28 m.p.h. We trundle through the familiar steps of returning the hire car, bussing to the airport, checking in and baggage drop. We divide our attention. He does the former, I deal with herding and entertainment, a semi-seamless exercise in well practiced teamwork. In 13 hours we will be back home in San Jose, all ready for the next bout of dental surgery and a quiet New Year celebration. We already know that everyone in our household will be awake to celebrate as that's one of the advantages of jet lag.

We corral our energy reserves and our children for the last leg and most significant impasse of our return. Loins are girded, steps are sequenced and reassurances fill the fetid air. Only 20 minutes to go.

The public address system summons their father as my heart sinks. They always call the father, the man. It’s a pre-emptive strike, a matter of public policy. It works on the underlying assumption that the woman will collapse in hysteria and cause a scene. Scenes at airports are not welcome in a sea of nervous passengers. I wait in a holding pattern with my children, but I already know what he has to report.

He returns, grey faced under mid day stubble.
“She has cerebral malaria. She's been admitted to Derriford Hospital.”

We are couriered to a quiet spot where telephone calls are possible as well as the exchange of information. I hunker down on the carpet with a cell phone attached to my ear. I store facts in a new file in my brain:- parasites, few people actually die of malaria, they die of massive organ failure, long term effects, treatment.

Of course there isn’t really a choice, but I pretend that there might be one as my eyeballs and his, lock together. I suspect that to abandon your spouse and three young children in an airport, 15 minutes prior to a transatlantic flight, is more than adequate grounds for divorce.

The caller passes the phone to my daughter, who is remarkably lucid. She provides me with dire and graphic descriptions of the progress of the disease, one that she has witnessed first hand. I am unable to process the references to falling platelets, Velcro and glucose, but it gives me cause to wonder why someone has given her a truth serum.
“Tell you what, give me a moment and I’ll be with you as soon as I can.”
“What about your surgery?”
“What surgery?”
“Oh I’ll cancel that.” Fancy her remembering! “I’ll make my way back down to you and I’ll try and by there before nightfall.”
“It’s dark by 3:00 mum! Are you coming in a rocket?”
“If you’re quick you can catch the 1:30 bus.”
“I’ll be as quick as I can dear, I love you.” How can she be delirious and yet have the Heathrow to Plymouth bus timetable in her head after more than a year in Mozambique?

I resist the urge to bolt out of the airport to run the 225 miles to Plymouth. I take them aside, one by one, to remind them of the rule, carefully instigated some 6 years ago. The rule, written in blood, states that whoever is ill gets mum’s full and undivided attention. Everyone else is left to starve. When it’s your turn to be ill, you will be number one. Each child protests at the unfairness of being absent for a year and then stealing the entire show. They grumble but accept the truth.

We debate backpacks and hand luggage.
“What do you think?”
“I have pull ups, changes of clothes for 3, water, medications and cuddlies.”
“I’ve got the new toys and other questionable forms of entertainment choices for a ten hour flight. Oh, and the emergency bag of Goldfish crackers.”
“Hand over the fish!”

I stand and hug my partner. He hugs me too. We stand and hug for a few seconds longer than strictly necessary. “See you later!” I beam as I retreat with carefully measured steps. I attempt saunter rather than march, gallop or warp speed. I ensure that each time I turn and wave that I wear my Cheshire Cat face, the one that equals ‘all will be well’ because I am a well practiced charlatan, but only at ten second intervals.

I leave in the clothes I stand up in, a handbag, a backpack of irrelevancies and a heart full of woe. Once I am sure I am out of sight I speed up. I become immediately aware of airport design. Airports are designed to funnel and channel large groups of people in one direction. I am now the lone wayfarer traveling in the opposite and wrong direction. All the signs are positioned with care to fit the oncoming traffic. I face the backs of all personnel who concentrate on the mainstream traffic. I have reason to ponder how many people change their minds at the last minute and jump ship, squander hundreds of pounds in non-refundable air fares every day?

I wait in a long queue outside the ticket office. The huge clock ticks on the wall. I present myself as the next candidate and make my request. The 1:30 is full. Panic. The next bus isn’t until 6:30. She suggests a standby option. If some unfortunate soul fails to make it on time, I will be granted the opportunity to steal their seat. I take my ticket and park myself of the cold metal mesh bench to wait. I glue my feet to linoleum to stop my toes tapping.

I use my time constructively. As I am the unluckiest person on the planet, everyone will be on time for the bus and everyone will take their seats. There will be no spare seat for me. However, I can secret myself in the luggage compartment if I’m sneaky. If I’m discovered I’ll climb into the overhead baggage rack. If they find me I shall commandeer the public address system and plead my cause to my fellow passengers. Who will give up their seat for me? Surely some kind hearted being will take pity on my plight? How much to make it worth your while? I check my purse. Dollars predominate rather than pounds. Everyone in England will be aware of the chronic exchange rate. I check my personage for valuables. A tired and tatty wedding band is my only option, worthless because it is devalued by the inscription on the inside. I resolve that during my next international travel excursion I shall drape myself in the Crown Jewels. Is there such a thing as a collapsible tiara?

I decide to be mature, calm and practical. Om. I shall plan for contingencies. What will I do if I can’t get on the bus? It is possible to wait in a bus terminal for an additional four hours? I could walk up and down to calm myself, or maybe round and round. How many miles can I walk in four hours? Will they sue me for the trench that I leave in my wake? No, impossible. What then? I know! I’ll take a bus to Victoria and take a train. Will there be a train, will there be a bus for that matter? No matter, I’ll take a taxi. Am I willing to waste a perfectly good bus ticket, forty pounds, 80 dollars and spend more money? I know. I’ll take a taxi to Gatwick airport and fly down to Plymouth. I’ll be there in a trice, in next to no time, blast the expense. What if the flight to Plymouth has already left? I shall hail a taxi and drive like the wind and add a second mortgage to the impending divorce bill.

The public address system announces the arrival of the bus, the 500 to Plymouth departing from Stand 11. I skuttle out and take my position ready to pull my forelock, if not completely tug it off. I mentally practice hurling myself on the ground, throw myself on other people’s tender mercies, preferably without cuts or grazes.

I watch the seats fill with weary passengers as they steam up the windows and their luggage clutters up the hold. A traveler from India presents his ‘e-ticket.’ The conductor is unimpressed and explains in painstaking and lengthy detail, why this is an inadequate means of passage. I shift my weight from one foot to the other to ensure that my blood continues to circulate through my brain, rather than burst through my ear drums. I dither.

Is now the time to be an assertive American? Can I be an assertive American? Can I pretend to be an assertive American? I extend my hand that clutches the damp and scrumpled ticket. I am suddenly aware that my arm is quaking. I realize that I have no-one to put a brave on for which means that I am in danger of melting or leaking. I decide to dissolve after I know the fate of my transportation.
“O.k.” he beams. O.k.? I am immobile with shock. "No luggage?" he prompts. My startle response is fine. I scamper onto the bus in a heartbeat and climb the stairs to the only available seat.

I perch on the only available seat and wait for the whoosh of the pneumatic doors. I secure my seatbelt to hurry things along. I concentrate on the large sign at the front of the bus which reads ‘TRIO.’ I try and work out what this could possibly mean?

The bus pulls out of the station and I am immediately aware that I really am an American afterall. My seat is on the right hand side of the bus, in a country that drives on the left hand side of the road. This means that I am unable to look out and perseverate on the road signs at ten miles intervals.

Within seconds the woman directly behind me begins to chatter on her cell phone. She has been on a trip to the Middle East for 10 days on holiday. I am unable to shut her out. I give up trying to shut her out. I am happy to dwell in her world of bad hotels and unco-operative camels, excessive alcohol consumption and inedible food. She phones her Dad first and her boy friend second. She is divorced. So is he. He has a child. She does not. I learn all about her food preferences as they discuss which take out to order. Her plans for New Year make me gulp. Will there be a New Year? Is it possible to stop time? Can you stop time if you have a really good reason? Is my reason good enough? Who can I appeal to? Two hours of personal, before she shuts the phone. It is rare to be so intimately acquainted with someone who you have never seen.

My male companion reclines his seat. I decide that I shall sleep so that I will have boundless energy on arrival. I recline my seat too. He turns his face towards mine and winks, “just like being in a double bed innit?” he smirks. I am uncertain how to respond. I only have two reactions available to me as my brain short circuited several hours ago. I can grin or cry. I opt for the former.

Another cell phone clicks open behind me. He chatters too. Several other young men turn to stare at the chatterer, to check his appearance and decipher his message. The several young men murmour between themselves, “should we tell the driver? Whaddayafink?” A corpuscle of excess testosterone. Their heads are huddled, their voices low and muffled, a conspiracy. Bottoms shuffle in seats, a double take, a double check. I hear expletives coupled with the word ‘Arab.’

I panic. I have no interest in the cell phone caller, his nationality, political allegiances and such like. I am incapable of racial profiling someone behind me who speaks in an unfamiliar language. I do know that I have an overwhelming need to maintain my current trajectory to Plymouth without interruption or delay. No pulling over, no heated debates, no explanations or apologies. I lean over to the young men, “it’s o.k. he’s just talking to his mum.” Three sets of suspicious eyes turn towards me, “Farsi,” I explain. I maintain the eye contact of a practiced and convincing liar. I pause as if listening to the next snippet, “he doesn’t want her to cook supper for him……..he’ll pick up fish and chips on the way home,” I add smiling, “what a considerate lad,……not wanting to put his mum out and all,” I beam adopting my best maternal countenance, wistful and warm. They sniff a bit, stretch out their knotted shoulders blades, unclench taught knuckles and let the blood flow again. Huff, puff and pouf.

A congestion of traffic clogs the roads as my reclining companion jitters in time with his i-pod. I believe I am suffering from a serious case of restless leg syndrome myself, without the assistance of a musical accompaniment. I lose all principles and reason. Sod the environmentalists and their disapproval of DDT. I’m tempted to nip over to Mozambique and kill ever Mosquito I can find, single handedly with a fly swat, but I can’t afford the deviation from my allotted course.

The Groom of 24 hour status, meets me at the bus station to appraise me of the developments during the last 6 hours. Plugged into the internet he has all the facts and figures at his fingertips, all of them dire.

In the hospital I approach my sleeping daughter. A tatty Xeroxed paper advises ‘would visitors not sit on the beds.’ I am sorely tempted to slip in alongside her, curl my body around hers, a sponge to absorb the sweat. I am certain that if I get close enough I’ll be able to smell an accurate parasite count, better than any blood test, as a mother’s intuition is unsurpassed. My adult child. Parents do not have favourites but my first born child, the first live birth, 26 years later now turns her face, vermilion and glistening as storm clouds of purple roil beneath her skin. Do her half open eye lids see anything as she slumbers? Tinnitus impedes her hearing, clouds her world from mine.

Our family faces a 7 day vigil, in England, in the rain, until her health is restored and the hurricane passes over. The confetti of happenstance flutters down on all our lives, without logic. On a different continent a child swallows a super sized marble and is rushed to the ER. The phase of oral defensiveness is challenged and may be conquered, given time. The evidence is there in black and white, in a x-ray. It is probably an experience that we should have experienced some 5 or more years ago, but development is unpredictable in autism. Of all the ‘diseases’ that are a scourge on mankind, I am heartily glad to know that Malaria, for one, is curable.

I wish all families could be as lucky as ours. Four healthy children. What more could anyone want?

This piece is dedicated to the memory of Katie.

Powerless little people like me all over the world "support" and mourn with her "family" for their loss.

AddThis Social Bookmark Button