Tuesday, March 25, 2014

Ghost Plane: A short story inspired by recent events

"Are we there yet?" Ming asked. He stared out into the pitch black, knees pulled up to his chin, shivering.

"Not yet. Soon." his Mom answered, squeezing his shoulders, her chin on his head.

"Are they going to turn the lights back on?"

"In the morning. It's time to sleep. That's why they turned them out. Just like we do at home."

"But at home I have a nightlight. It's too dark!"

"Oh, I guess theirs broke. Here's our light." She directed her mini-mag light against the back of the seat in front of them, her hand forming a barking dog. Ming stared, thumb in mouth.

"I'm hungry"

"We'll eat soon, at breakfast. Now we have to sleep". She stroked his hair until Ming nodded off. As he did so, he felt as if he suddenly drifted faster and faster, careening fast as light.

* * *

He woke to the sound of conversation. It was light, and a man's drole face stared blankly at him from the seat before him. It annoyed him. The blinding bright light streaming in annoyed him. In the cabin card games were being played, cocktails were sipped, and dinner was being served. Ming squinted his eyes at the steaming tray of crab legs being lowered onto trays across the aisle. He breathed it's warm briny scent.

"Hey! It's supposed to be breakfast!" Ming said.

His Mother sat beside him, thumbing dreamily through an in-flight magazine. She raises her eyes to him, then lowers them again. "Aren't we lucky though. Eating like kings." Sure enough, a clay hotpot is set before Ming. The steward lights a flame underneath the hotpot. "Space noodles!" says the steward.

He shoves the lid aside to peer at noodles, meat, and broth jiggling inside. He eats hungrily and loudly. When he finishes he picks up the lid to place back on to the pot. Startled, he sees the ocean below right through the bottom of the pot. He stares. The ocean sparkles in the sharp light below. "Hey," he says, "where's the land? There's no land yet!"

His mother peers over at the newly discovered portal. "Oh yeah. I see. I guess that's what they were talking about a little while ago. The captain came on and said they can't see any land; they are looking."

"Soooo, they can't find any?"

"Well, keep looking and maybe we will find it."

"I have to find it?"

"Someone has to find it, right?"

Ming scans the waves below. But the waves all look the same and they are so tiny. He doesn't know where to look. He scans right to left, from the bottom to the top, as the ocean traverses beneath them. When he tries to focus, his eyes quickly tire from the bright light. "I need my sunglasses Mommy"

"Your sunglasses are in our suitcase. And you know where our suitcase is!"

"In the ocean!" His eyes are wide with mirth.

"In the cargo hold, with the other suitcases, and the naughty children." She smiled.

"Can we go down there!"

"Maybe after lunch. After they clear the aisles."

"You mean breakfast. We just ate breakfast."

His mom considers his statement, then continued with her magazine. Ming squinted his eyes as he munched on chocolate covered strawberries, the red juice dripping. The liquid drips down into the claypot-portal. Instead of splashing onto the surface of the portal, the liquid crystallized and burst. Red shards shoot down toward the sea and disappear. Meng wonders if some things can go through the claypot, and other things can't.

"This is nice," his Mom says, peering down at an item in her magazine. It is a full-page item, which means it is special. Ming recognizes a pontoon boot. He scans her face, unsure what interests her about the boat. "What do you want that for?"

"Well, the thing is, you never know what you will need and when" she replies snootily. Subsequent pages display: real estate, animals, rocket ships, boats, and food of all kinds, both fresh and prepared.

"Could we get this." Meng leans over and puts his thumb on a 1/4 page add displaying a bouquet of chocolate flowers exploding out of a candy house.

For reasons she doesn't recognize, the sharp shove from his little body annoys her terribly, as if her son were no more than a tumor embedded in her side. Even as she chases away this sensation, a portion of her boils and threatens to shoot right through the roof.

"You'll get fat" she reminds him, satisfied with her cruelty. From the catalogue she orders a prefab single family house, which can be assembled in a single day using simple tools. In response to Meng's questioning look, she opens her eyes wide and shakes her head to put a kiss on him.

* * *

They are walking through the cargo hold looking for their suitcase. "I want my coat and my iPad" Meng says, scanning the stacked bags. "What? I can't hear you". The tiny high pitched scream of the engine and the interior roar cushion their speech.They walk past a row of large plastic dog crates. "Hey," says Meng, "there's a kid in there!". Sure enough a small child sits calmly inside the nearest crate, tilting a plastic maze game to work the ball towards the goal. She is dressed in traditional folk dress. The child's furrowed brow belies whether she notices them or not. "Shoot" she frowns, shaking the maze.

"Do you want to come out?" Meng asks, eyeing the catch holding the metal grate shut.

She twists her mouth sideways. "Mmmmmm, no. Not really."

"Why don't you want to come out?" he asks.

"I'm waiting for my friends to come" she replies.

"How will they find you?"

"'Cause this is where we always sit!"

"Always? You mean every time you fly to China?"

"We're not flying to China! And no – I mean always always! Most days!" She returns to her maze. The maze is a spiral formation. The tiny ball rolls, carefully missing the traps along the way.

Meng and his mom continue on their search among the suitcases.

* * *

They awake to find the item ordered from the in-flight magazine had been placed on their trays in a crisp white bag. "How long did we sleep?" asked Meng, yawning and sore.

"I don't know. I guess they landed and got everyone's duty-free picked up" said his Mom, rubbing her eyelids elegantly with just the tips of her fingers.

"Wait – we landed?"

"The captain said we were landing to refuel only. They still can't figure out where land is"

"So, where did we land. . ."

"I'm not sure. it was really dark outside. Maybe like an aircraft carrier or something?" She opened her pocketbook to find her glasses and chapstick.

Meng opens the bag from the in-flight store and unboxes the item. The house his mother ordered turns out to be a tiny detailed model. It looked full size in the catalogue. "Why's it so small," Meng wonders. He was excited about the big house, the real house in the picture.

"This is just the token for the real house" his Mom replies. "We keep this one, until we have a chance to settle down".

Meng pouts. "We should have got the chocolate."

His Mom smiles wide. "We did get the chocolate." She turns toward the window. "Look." He looks out. Among the soft clouds, and every bit as big, the chocolate lollies sway and dip in the sun.

"But we can't get there!!!" Meng wails.

His mom strokes his hair gently. "Isn't that the way it is."

Running Mindlessly (Kayla)

I went for a run today for the first time in ages, inspired by Kayla Montgomery (link to article and video). I did some short sprints as I can't tolerate exercise, heat, or being upright for long due to orthostatic intolerance. I was surprised to be able to run this afternoon because this morning when I ran errands I was in bad shape. I have been having neuropathic symptoms since last May and my mobility is suffering. I had tremors this a.m. and could not feel my legs. I was dragging my feet sideways, and leaning down onto my cart. My body felt as if it was about to give out. My lungs felt so shallow, as the lack of oxygen over time diminishes organ function.

But after a long nap, in a momentary fit of inspiration, I decided to take the doggy on a short run before I could change my mind. I was always a fast runner at short distances, and today I remembered why I loved to run. Despite (because of?!) the terror of going fast while your brain is short-circuiting, running is absolute joy and freedom.

When Kayla runs, signals between her brain and body are increasingly blocked, such that she can't feel the pain in her legs that distance runners typically have to overcome. The numbness in her legs becomes an asset, helping her overcome the MS symptoms that are working against her at the same time.

With orthostatic intolerance, blood settles in the lower body, leaving the upper body and brain deficient. It was probably an advantage to have the extra blood/oxygen in my legs. The difficulty comes in staying focused enough to stay between the lines and finish the race while your cognitive function rapidly wanes. In Kayla's case, she had to give up soccer for a sport where she can "lock in" her movement, keeping track of just a few factors. Each race is a race against time; you want to finish the race before you pass out or give out. It is counterintuitive if you think about it. The important thing is not to think about it.

I was fascinated with the video footage of Kayla Montgomery finishing a race. You can see her struggle at the end; her gate becomes jerky, her eyes go blank. At each finish she collapses and seems to lose consciousness. Her limbs stiffen and spasm uncontrollably. After crossing the finish line, her coach and team members gather to "catch" her, breaking her momentum while she careens out of control. They lift her and carry her horizontally; she seems to float above them, limp and bereft. She dies each time – only to emerge miraculously from her stupor a short while later once her body temperature cools. I was inspired by her to stop worrying about what happens afterward and what people might think, and to trust that we will recover if we are meant to. Recovery is out of our control, but the will to run is not.

Sunday, March 23, 2014

Waiting for Health Insurance

Dear Jayne at USA Today:

Sorry for long delay; I was sidelined for weeks with migraines. Regarding your recent inquiry on the status of my health insurance, I recently received some information: ALthough the letter I received from Covered California in January stated that I was to wait until the County sent me information regarding my Medi-CAL eligibility, I finally called them in frustration. It took 1 1/2 hours and five people on the phone to inform me that I needed to speak to my Case Worker, Dave Katz, for any information regarding my insurance. Dave informed me that the COunty needs me to bring my passport in for certification of citizenship, and that I needed to fill out a form to add myself to my son's existing Medi-CAL services. I submitted these documents just last week, once my migraines subsided, and once again I am waiting to hear back. I did ask WHEN I should be able to use my Medi-CAL insurance. I was told that I am authorized to receive Medi-CAL insurance, but they don't know when my insurance number will be activated for use.

In the meantime I have had to cancel two doctors appointments (Cardio and Neuro) due to lack of an insurance card, and I have had to use emergency services when I became dehydrated from migraines/vomiting. I have requested that the COunty provide health insurance retroactive to January of this year, so I am hoping that the $1,800 ambulance and $900 ER services will be covered, as I lost my ability to pay for services when I became disabled. ER services administered Zofaran for acute nausea/vomiting, and 2 additional drugs for pain (Demerol plus one other). They told me I should be able to get prescriptions for these exact same drugs to keep on hand in case of another attack, in order to prevent unnecessary use of ER services. I do not know if Medi-CAL will cover these drugs, however, and more importantly I cannot administer a fluid IV on my own. Some POTS patients have an IV port inserted in their arm so they can hook up an IV when needed. Again, I don't know if Medi-CAL will cover this treatment.

The most frustrating aspect I have yet to address: Most doctors do NOT accept Medi-CAL, including my AUtonomic Specialist/Cardio. And since I am unable to travel, I have no idea if/how I will find a doctor willing to treat me, and how to get there? I decided to ask my new General Practitioner to request an electric wheelchair for me in addition to or instead of a Walker, as Medi-CAL does not provide Medical Transport unless you are blind or in a wheelchair. Even though I prefer to walk as much as possible I have to solve this logistical problem before I can even go see a doctor. I am simply not able to travel beyond a very small radius with the symptoms I have. My fear is that there may be a limit to how far they will transport you to a doctor appointment (some San Diego County residents travel to Riverside County in order to find a Medi-CAL doctor). I also have to wonder how the cost of Medical Transport compares to the money they save by limiting which Doctors can see us. I can't imagine that it costs less money to pay a Medical Transport driver and van for 5 hours travel and wait time, than it does to pay a local doctor a fair rate outright. Any logic is defied in this scenario.

Yesterday I did some reading online on one of the Dysautonomia forums. ONe fellow who studied medicine ( and actually comprehends the white papers on POTS unlike me!) provided a lot of helpful information. He verified the need for POTS patients to get IV fluids on an as-needed basis (when flare-ups are acute/worsening), and he does not hesitate to go to the ER when he needs fluids. He recommended contacting your GP first, in case they have time to treat you in office. This scenario frustrates me. While it is a comfort to know that ER services are covered, it would be even better to prevent such episodes in the first place through proper care and maintenance. However, I fear that the narrowing of treatments and services provided by insurers (to save costs), and the lack of doctors available to poor patients may in fact result in a very expensive and ineffective scenario.

In addition to POTS, I also suffer from Bipolar disorder. Psychiatrists and Psychologists do not normally accept insurance, and I am very afraid that I will have to go to the ER for acute mental health episodes when they arise. I am beyond frustrated; the lack of any sense in our health care system is enough to make one suicidal.

Sincerely, Naomi Spellman