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Monthly Archives: October 2013

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My back hurts. Buy it a cupcake?

Aaaaaand now that I’m out I can’t go back in again, and overwhelmingly I am getting asked one question from the people who know me in real life:

How come I didn’t know you were sick?!

Well, it’s not really a talking point for most of my day.

Welcome to my office, I have chronic disease!

Nice day isn’t it? Yes, especially for tachycardia!

Would you like some coffee? It won’t make you sick.  Unlike me, who’s totally sick.  And maybe even DYING!  Cream and sugar? 

cupcakes}Unless you’re my cardiologist, neurologist, endocrinologist, orthopedic surgeon or physiotherapist, there’s a good chance that I have no reason to keep you actively and intricately informed of how I’m feeling.

The exception to this is my husband, who hears way more about how I’m feeling than he probably ever wanted to.  (My toes hurt! They want a cookie!)

You may also be the victim of limited observational data- you only see me when I’m fit to be seen.  You don’t see me sleeping off pain for hours at home.  You see me when I’m feeling good, because if I wasn’t feeling good then you wouldn’t be seeing me.

I don’t define myself by my illness.  I have more in my life going for me than being sick.  I have work, kids, and a charming, obnoxious, supportive husband.  I have places to go, things to do, and topics of conversation other than chronic illness- like Khalid, who yesterday said to me, “Momma, are babies toothless mammals?”

“Yes, I suppose they are,” I tentatively replied.

“But I was born with teeth,” Khalid said.

“No dear, you weren’t.  You didn’t have any teeth when you were born either.”

He seemed disappointed.  Poor toothless mammal.

To talk exclusively, or even primarily about how sick I feel for the day would not only make me a total downer to hang out with, it would also be self-centeredly depressing.  I deal with pain all day, the last thing I want to do is talk about it all the time too. I rather enjoy having normal friendships, normal conversations, and normal people around me who talk about normal things.

My sickness is a bit like the news- if it’s relevant or urgent you might want to know.  But if you leave it running in the background then people just tend to tune it out.  That doesn’t mean I’m not willing to talk about it, provided there’s something you’d like to know and it adds value to your day somehow.

So yes, you may have known me for the past three or four years and I may never have mentioned that I’m sick, but I humbly hope there is more to me than just my status as a chronically ill person, and you’ll still be my friend if I talk about things other than chronic pain and my favorite new heart medication.

Which is procoralan.

By Abez, the end.

Alhamdulillah! I’ve been upgraded!

There aren’t enough characters in the title limit to fully express how many Alhamdulillahs I would like to put in the title, so I have to settle for one.

So, Alhamdulillah, my neurologist in Chicago (who I visit this last week) has helped me clarify what exactly’s going on with my body.  To make a long story short, I do have muscle atrophy, but Alhamdulillah- it’s not from unspecified myopathy- it’s from my brain!

Yes, this is actually a better prognosis than before.  See, before I was told that my muscles were atrophying because there was an unknown problem with my muscles.

Now, it turns out that my muscles are atrophying because my brain is not communicating with them properly, and the reason for this is because I have:

  1. Autonomic Dysfunction, specifically Postural Orthostatic Tachycardia Syndrome
  2. Ehlers-Danlos Syndrome

I’ve leave you to the googles to figure it out.  Neither are curable, both can be severely debilitating but guess what- at least they’re both known disorders!  And, either one of which can be life-threatening due to complications, but neither are inevitably terminal in and of themselves! Alhamdulillah.

Did I say Alhamdulillah already?  Alhamdulillah.

To be frank, this doesn’t change much in terms of me maybe or maybe not dying.  Just in case you were hoping I’d be checking out soon and leaving my impressive bottle cap collection up for dibs.  Or, if you were hoping I’d be magically cured.  Having been to the neurology specialist in the US and been extensively poked, prodded, tested, and even strapped to a table that tilted like a carnival ride, I have the same medical issues that I left with, but with one important distinction.  I’ve been upgraded from unknown and possibly terminal, to just chronic and possibly life threatening.

Alhamdulillah. 🙂

By the steeds, choo choo!

Autism has its pros and cons- and boy does it ever have its cons- but SubhanAllah, it really has its pros. Khalid doesn’t just like dinosaurs, he likes reading about them, and he doesn’t just read stories, he reads encyclopedias.  And he’s not just reading encyclopedias, he is memorizing them- word for word, page by page, and he’s on his fourth dinosaur encyclopedia now.

camarasaurus

Roar.

If you ask him about the Camarasaurus, he won’t just tell you it had four legs and went roar.  It was a four legged herbivore with a bony crest on its head, and it was between 15 and 23 meters long.  It had hollow vertebrae and was one of the larger sauropods.

And it went roar.

And here’s a picture.

And it was also known as the morosaurus.

So when Khalid starts getting interested in something, he doesn’t just dip his feet into the water, he dives in-head first, and forgets that there are any other things in the world that could ever be as interesting.  When he was into maps, he would wake up in the morning and read the Dubai Street Atlas.  He would carry it to and from school, and often kept mini-maps in his backpack.  To this day, he can still give me road directions off the top of his head, and will often point out when I’m taking a wrong exit. MashaAllah, he doesn’t need a GPS.  He is a GPS.

He is also a walking dinosaur encyclopedia, and now, InshaAllah, I hope he’ll become a walking Qur’an. Khalid immersed himself in the waters of Qur’an on the iPhone shortly after trains, and slightly before dinosaurs. He memorized a good half of Juz ‘Amma on his own and without us really knowing.  We didn’t realize how many surahs he knew until we heard him driving trains up and down the hallway and reciting to himself, “Wal ‘adiyati dhub-haa! Fal moori’yaati qad-haa, Fal mughiraati sub-haa!”

Even now he surprises us- the other day I was in the kitchen cooking and randomly reciting Qur’an, and when I paused to make a distinction between the black pepper and the coriander powder in my hands- he called out the next verse for me while passing up the hall.  It was in Surah An-Nabaa, which he already knew, MashaAllah, MashaAllah, MashaAllah.

And now, Alhamdulillah- with me sitting halfway across the world in Chicago and HF managing all three kids with the help of his parents, Khalid and Iman have started Qur’an class, and I am tremendously excited about what will be coming next.  Of course, Alhamdulillah, I’m excited for Iman too- she’s a bright little star and she can carry a tune and stay on pitch like nobody’s business.  But it’s Khalid- my little memorization machine, that I’m especially excited about.  I could actually, really, InshaAllah, possibly even maybe become the mother of a haafiz.   

It was narrated from Ali ibn Abu Talib (May Allah Be Pleased With Him) that the Prophet (Peace Be Upon Him) said : “If anyone recites the Qur’an, learns it by heart, declares what is lawful in it to be lawful and what is unlawful in it to be unlawful, Allah will bring him into Paradise and make him the intercessor for ten of his family all of whom have deserved Hell.” [Al-Tirmidhi 653]

I know we’re still a long way off from memorizing the entire Qur’an, but I’m excited. For Khalid, this could be an amazing use of his autism pros (laser-like focus, amazing memorization) and for me, this could be the next cool goal in my legacy project. Did I forget to capitalize that? My Legacy. There. If Khalid memorizes the Qur’an and keeps the halal halal and the haram haram, he can give his lil ole momma a leg up into Jannah, InshaAllah.

So duas would be nice, but don’t limit them to Khalid only. Include Iman in them too, because the only thing better than one righteous hafiz is two. 😉

Hifz Class

Home Thoughts from Heathrow

Chaffinch2Oh, to be in England
Now that April’s there,
And whoever wakes in England
Sees, some morning, unaware,
That the lowest boughs and the brushwood sheaf
Round the elm-tree bole are in tiny leaf,
While the chaffinch sings on the orchard bough
In England—now!
-Robert Browning

It was a strange angle for my head to be tilted at, cocked severely to the right and resting uneasily against the cabin window.  I woke up because I smelled eggs.  The passenger to my left was still asleep.  She was a designer for a major retailer.  She said you could put Hello Kitty on a pink garbage bag and it would sell. She’s right.

She fell asleep immediately after the flight took off.  It was 2am Dubai time, and by my hasty calculations, I had to stay awake for only two and a half more hours before it would be time for Fajr, and then I could sleep. Boy was I wrong. And now I’m surrounded by old ladies.

They’re in varying degrees of old and in need of wheelchair assistance, and we’re all waiting in the special assistance lounge of Heathrow Airport.  The western women, invariably, have short white hair, glasses, and cardigans.  The Asian ladies have their little old heads covered.  The African ladies are seated together in a sparkly, vibrantly-colored group.  And then there’s me- a 33 year old “white” woman in a black abaya and a flowery purple scarf.  They’re eyeing me curiously.

My calculations were totally off.  I did wudu and took a seat, waiting for my two and a half hours to pass before I could pray and get some sleep.  I turned on my tiny TV and watched Monsters University.  The movie finished and I looked out the window.  It was still dark, and in the cloudless sky somewhere over the Arabian peninsula, the big-dipper sparkled.  Bright, close, and undimmed by light pollution, it was a beautifully clear reminder of nights outside of my grandmother’s remote house in southern Indiana.

She’s eighty-eight now, and 115 pounds.  She is afraid of climbing stairs because the last time she lost her balance she fractured her hip.  I haven’t seen her for six years, and it’s frustrating to me that I should be coming so close- all the way to Chicago- only to still be so far.  She’s living in the warm, safe care of my aunt in Arizona, hundreds of miles and dollars out of my budget.

My health insurance doesn’t cover the US, so this visit to Chicago to see a neurology specialist will be thousands of dollars out of pocket.  Allah is the Best of Providers.

He is also the Best of Planners.  Right when my hands starting shaking, and my head started feeling heavier than usual, and HF and I started wondering where the money to fly out and see a doctor would come from- it came.  Allah caused an old, nearly forgotten debt to be repaid, and that’s where this trip is from: Allah.

There are a few old men here too, but most of them are just accompanying their  wives.   There’s even a wheelchair assistant- an employee of Heathrow Airport- that looks like he should be the one being pushed.  I wonder how old he is, and if he’s the one who pushes me to the terminal, will he wonder why someone half his age isn’t just walking there?

I catch people looking at me curiously, and the 2.0 in me smiles back, encouraging them to approach.  No one has so far, and my guess is that they think I’m an Arab.  So the white women keep a distance, the Pakistani women don’t include me in the polite small-talk, and the one real Arab here asked me a question in Arabic earlier that I couldn’t respond to.  Sorry, I’m a fake.

Well, I’m not actually.  I’m a genuinely tired, shaky, and mobility-challenged person, but I tend to be in denial sometimes, and it doesn’t help that I still look pretty good.

2013-09-24 07.59.00I assume I look pretty good, but my eyes are tired, my scarf feels sideways, and I only managed to sleep for an hour before I was woken by the smell of food and the clatter of the air-crew preparing breakfast in the airplane’s galley.  I opened my eyes and turned my severely cocked head to see that the black, star-strewn sky was bordered with a bright-red glow that hinted at a sharp golden line at the very edge of the horizon.  It was finally Fajr, six hours into the flight and four hours later than I had planned for.

I did wudu four times for that one prayer. After the first movie finished I stretched, waited, stared out of the window, my sleep-deprived brain searching for a reason why it was still dark.  It came up with the original Xcom UFO, where your job was the save the world from an alien invasion.  The same world turned before you in VGA-glorious rotation on its axis, turning from night to day and night again.  I knew I was flying from the right side of the world to the left, but I couldn’t remember whether I would be flying with the light or flying against it.

I turned on another cartoon.  Epic.  It wasn’t Epic.  It was a mis-labeled attempt to pass 104 more minutes waiting and wondering why it was still dark.  I got up for a stretch.  I used the bathroom.  I did wudu again.

The sink was tiny.  The taps were tiny.  But the water pressure was tremendous- and the tiny stream of water was blasted into a spray that wet everything in the bathroom except my hands.  I did wudu as best as I could, washing my hands, mouth, face, arms, abaya, purse and shoes.  Then I did my best to paper-towel things dry before going back to my seat to wait again for Fajr.

I wish my kids were here.  When the plane began to descend over London, there was no one for me to share the wonder with.  We were preparing to land over a solid terrain composed entirely of clouds, except for where clusters of tall building had broken through, their lights glittering and flashing above a grey ocean. It was the famous London fog, and when the plane began slowing to hit the runway, it was doing so in zero visibility.  The sky above the fog was crystal-clear, but within the fog it was non-existent.  We had no sky.  From where I sat, the plane barely even had wings.

I want to remember these things so I can tell Khalid, Iman and Musfira about them.  There were stars- distant white diamonds in a perfectly black sky- no clouds, no lights, no other planes. Then there were the cities, their densely packed lights looking like embers on the dark background of Iraq.  I checked the map, that was Iraq.

I was so grateful to be awake.  I was afraid that I would miss Fajr, and while I have missed hundreds of Fajr prayers before, most of them were before my hands started to shake.  Once laziness made my eyelids heavy, but urgency has made them light and quick to open for prayers now.  I was so relieved to have been woken up that I was actually happy to get up and do wudu again- fourth time the charm.

I happily prayed and then turned to watch the horizon glow, just waiting to watch the sun rise.

Except it didn’t rise, becase we were flying away from the dawn and if we had been going any faster it would never have caught up.  We would have flown endlessly around the world being chased by day, hiding in perpetual dark, sharing aisles and armrests but refusing each other identities or eye contact until the fuel ran out and the plane crashed and we all died and went back to Allah where we came from.

Iman and I have made a pact- that if she cannot find me, she will come looking for me in Jannah.  But if I cannot find her, I will come looking for her in Jannah.  It’s a deal.  Khalid and I have a deal as well, but it involves him making sure that the hamster has food and water, and he gets dinosaur and train pajamas from the US.  Also, Iman wants a Chinese parasol.

I’m now going to be moved from the wheelchair lounge to the boarding gate, and the staff member who came looking for his “disabled” passenger looked at me and said, “Oh, Miss Abez? We have a young lady here.  Practically a girl… your limousine is here.”

So it’s time for me to go now.  But here I am, sitting halfway across the world, looking forward to returning home before arriving at my destination.

And Allah is the Best of Planners.

And after April, when May follows,
And the whitethroat builds, and all the swallows!
Hark, where my blossomed pear-tree in the hedge
Leans to the field and scatters on the clover
Blossoms and dewdrops—at the bent spray’s edge—
That’s the wise thrush; he sings each song twice over,
Lest you should think he never could recapture
The first fine careless rapture!
And though the fields look rough with hoary dew,
All will be gay when noontide wakes anew
The buttercups, the little children’s dower
—Far brighter than this gaudy melon-flower!