Tuesday, September 15, 2015

On death and dying

I just read an interesting article about a 23-year-old woman diagnosed with a terminal form of brain cancer who crowd-funded her own cryo-preservation. She raised $80,000 to have her brain preserved so she could have the chance of another life in the future, when science could either repair her brain and install it in a new body, or upload her personality into a digital consciousness.  

While the science behind the process – where a brain’s intricate pathways are mapped out and preserved and the entire organ frozen until the unforeseeable future when science can use those pathways to program the individual’s personality into an artificial life-form or even perhaps a cloned new self – is not particularly appetizing or confidence-inspiring to me, the story itself, of a young woman facing the prospect of dying young, I can relate to.

While thank God I am not dying (well, not any more than any of us are), I have twice had to consider the prospect of Death’s early arrival. The first time was when I was told I had malignant cancer and the second when I was told I had a brain aneurysm. Each time, I went through that indescribable out-of-body experience of considering the question of “Am I gonna die?” You suddenly telescope up and away from all of your petty concerns like how fat you are or whether you’ll get promoted this year, and look down on your life as outsider. The image you see is a photo where someone has toggled all the way to the right on the brightness/contrast option – the grays amplified to blacks or whites and all of the little things blurred out. You see your life in purely broad strokes.  

Here Lies Zee –

Recent wife to one awesome husband, daughter to two contrary parents, sister to three equally-warped siblings, aunt to thirteen amazing midgets, and friend to a few patient souls. She thought she’d live longer so her epitaph isn’t as cool as she’d hoped. No Nobel, Pulitzer, or even World’s Best Mom. But she did manage to rescue some stray cats and birds, never stole except for that one time when she was five, and tried to give more than she got. The end.

That’s about it. Not very impressive and the prospect of just that being my final tally was actually surprisingly unpleasant. When I was a kid, I was one of those emo, ‘why-am-I-alive?-what-is-life?-I-didn’t-ask-to-exist’ types. I grew up to be a young adult often accused of having a death wish, and agreed I probably did. Even now, as an adult, I’ve never been one to ‘cling to the earth in fear of death’ and have thrown myself out of a plane and into harms way on numerous occasions. I thought I was pretty chill with it. But when Death shows up as a potential appointment on your current schedule, no matter how blasé you think you are, you don’t want to meet him.

It turns out that when I found out I could die from my illnesses, I really didn’t want to. I’d betrayed my cold-hearted teenage self and invested in humans and life. I couldn’t leave my poor husband alone in this world. What would my family do without me to play as negotiator and therapist? Who’d feed the cats? I always said I’d write books but hadn’t found the time! I had too much unfinished business. I needed to do what I could to stick around and thankfully, in both cases, I was able to. My cancer-harboring thyroid was evicted from the Zee Body Politic, and my explosive brain was defused with glue. God gave me that reprieve that so many would and have paid fortunes for, not once, but twice.

So I don’t judge Kim Suozzi for launching that Reddit campaign to raise funds to give her consciousness the opportunity to come back. Because if you don’t believe in an afterlife, and this life is it, well, 23 years isn’t very long to give life a go. It’s just long enough for you to gather the tools and beliefs that will lend some purpose to the decades ahead. In your early 20s, you’re still young enough to believe in your vast potential but not yet have had the chance to test it. Such a short life is not long enough for stress and failure to sap your confidence, or the pains and indignities of old age to make you hanker for that final rest. You want more, and if you don’t have that mortal hope of an immortal soul, well, wouldn’t you want to do whatever you could to get a chance? I hope somehow Kim gets it.

Wednesday, August 12, 2015

The Emergency Room - Where everybody knows my name, doo doo doo, and they're never glad I came, do doo doo...

This is another drive-by update.

I turned 33 this week. I am now JANNAH TASTIC. Cuz apparently 33 is the age of people in heaven, so say some ahadith. Does this make me heavenly? IT SURELY MUST. DO NOT DEBATE THIS.

Seriously though, I feel fairly meh. I’m out of shape and have gained a few pounds. My family insists the weight has filled out my face so I look healthier. I personally prefer the wan and consumptive face I usually have when my body is closer to my preferred weight but all one’s preferring won’t keep cake from jumping into one’s mouth and finding its way to their jowls. I guess my face looks ok otherwise. Some wrinkles but hey, I’ll swap them for the absence of acne any day. About damn time those bastards left me alone.

My pain levels are good though. Not at their lowest, but manageable at a five out of ten. I can walk straight and am not limping or wincing, though my skin still has that constant bruised feeling going on. For me, that’s a pretty good pain status. Unfortunately my energy levels are shot. I seem to always be extra tired these days. I’m considering upping my dose of pep pills, but I’m wary of self-medicating. Can’t put my finger on the cause of this down-tick. I hope it passes. I’m tired of being tired, waking up like the walking dead only to mostly stumble through the day. It’s no fun at all.

So of course, I celebrated my birthday with….. a….. FUN MEDICAL MISADVENTURE!!!! WHEE! It wasn’t anything dramatic though. I had some dental surgery the week before and woke up with a fever and face like a chipmunk. So away the husband and I went, to our favorite date spot – The Emergency Room – where everybody knows my naaaaame *que the Cheers theme song* (at least the receptionists and pharmacists do)!

It seems my dental surgery had resulted in an infection, and they needed to be sure it wasn’t in my sinuses as well, so I had to X-ray my head. One X-ray image in, and the technician stops the process, comes out of the monitoring station looking all concerned and asks me: “are you wearing a nose ring?” Uh, you see my face. It is not nose-ringed. I don’t have such extra holes in my head. She looks at me in consternation, as if squinting at me will make my naughty invisible nose-ring appear, and goes back to the monitor. Then she gets her manager. I hear hushed whispering. The husband is with them and asks “What’s going on? What’s the problem?” More hushed whispering.

Then the lead technician comes over. She too looks at my problematic head, confirms I have no grommets hanging out of my nose, and then says “Ma’am, there is some abnormality.” Not this again. Abnormality is practically my middle name. The husband calls out “they say they’re seeing something weird on the scan on the right side of your head.” What do you mean weird? And are you sure it’s the right side? “Yes ma’am, on the right, near your nose.” I start wondering if any of my many nights of lucid dreams were actually alien abductions with traditional nasal implant souvenir. Or maybe I shoved a crayon up there when I was a kid and forgot about it. OR maybe one of the doctors left something in my sinuses to remember him by. My troublesome head boggled at the possibilities.

“You’re SURE it’s the right side?” I ask again. “Because I DID have brain surgery but it was on the left side.” They all go back to the monitor, staring and discussing. Finally I hear Mali announce “It’s a flipped image! It’s the left side! This must be from your aneurysm surgery!”


And lo and behold, the abnormality showing up in the X-ray wasn’t just FROM my aneurysm surgery. It WAS my aneurysm they were seeing. Apparently, the Onyx HD glue the neurosurgeon used to seal up my 10mm aneurysm shows up on X-rays like a solid object, complete with daughter-aneurysm lumps. So I do INDEED have a rock in my brain.  Checkit out!


Awright, that's it for updates. I shall probably now disappear for another few weeks. Try not to miss me too much. :P

Monday, August 3, 2015

Yo man.... perspective.... and kale.....

I had a couple of instances I wanted to blog about but it’s been really busy at work so I wasn’t able to catch those thoughts and put them down to electronic paper before they faded away. But I'll try and recall them.

July 3 was the first anniversary of my brain surgery to repair my aneurysm before it ruptured. In the past year, all the memories and stresses of that time have gone from stark Technicolor to washed out – which I suppose is one of the good things about having a wonky brain and memory.  I remember the bleed-out at the clinic that did my angiogram the day before the surgery, and the amazing sandwich I got to eat after fasting for a trillion hours (I LOVE YOU JIMMY JOHN’S). And I remember the never ending pre-surgery preps, with the surgeon’s nurse and head OT nurse having some kind of weird territory/power struggle over my gauze becapped head. And of course, I remember jumping into the conversation about some sport that the doctors were having as I was slowly fading out of consciousness, and my fuzzy brained hope that I was being appropriately social and not sounding drunk. And I remember waking up in recovery, and the drama with the damage they did to my throat when they took out my tubing, which turned me into a blood fountain. But that’s mostly it. The rest, my husband has to remind me about.

It’s funny how something that once loomed so blindingly large in your life can fade to such banality. I realize how blessed that makes me – that I was able to have my life-saving surgery within days of my aneurysm’s likely rupture, and that I was able to return to work without any noticeable side effects or changes, to such a degree of success that I now sometimes forget to tell doctors about the aneurysm when sharing medical history. Inshallah (God willing) in a month or two I’ll head back for my second post-surgery follow up angiogram, and hopefully it'll find everything in there as good as they need to be.

OH! And I was able to fast all of Ramadan! Subhanallah (glory be to God). That was such an unexpected gift. Last year, I couldn’t fast at all, as I had my surgery right at the start of the month, and was on such heavy medication throughout that I wasn’t physically able to. I’m still on a cocktail of pills so I wasn’t sure how I’d manage if I was unable to take them at the normal times, and also have access to interventional medication when I was feeling especially ill. Everyone in my family was VERY wary of me fasting and kept trying to dissuade me but man, last year was the first time in my life I didn’t fast a Ramadan and it felt bad. Like I was deprived of something. I need that month of discipline and increased spiritual focus. It helps reset your body and soul. So I made my mind up that I’d fast as much as I could and do whatever necessary to ensure that. For me, that meant I had to take two naps a day, go to bed early, and put up with a near daily mild-migraine. PLUS, I was operating at about 1/3 of my normal productivity levels at work. But hey, so is everyone else who’s fasting, so it went unnoticed. 

This is the year I am supposed to be getting back into shape, after two years of being in a recovery/post-operative state. But unfortunately I haven’t yet gotten there. I’ve thrown out my back and even sprained about five times this year, with increasingly little provocation. Each time it happens, I am barely able to walk or sit and have to be on muscle relaxants and pain meds for weeks. Even right now, I’m still getting over a sprain that had me in the emergency room and on bed rest for nearly five days. Just when I think I’m better, I do a little more activity and suddenly, I feel that gut-wrenching twinge in my back that is the precursor to days of agony and immobility. Sigh. So I’m taking it easy for another week or so before I hop back on to my elliptical and try some weights. I wish I knew a physical trainer out here with the expertise needed to train someone with a connective tissue disorder and spinal degeneration. I think that’d help ensure I don’t harm myself trying to get fit.

AND, I am going to try a new diet. Yep. It’s not a normal Zee year if I’m not trying to starve myself thin. I keep foolishly hoping that somewhere out there is the diet that will work with the confusing conundrum that is body in the best way possible, making me effortlessly thin. This time I’m doing a version of the Fuhrman diet, which promotes eating food with the maxium micronutrients per calorie. This means you eat tons of greens mostly (KALE?! KALE!) and avoid animal fats and protein, processed foods and carbs. My mom has been doing it on and off and has lost about 40lbs and just seems a lot healthier. I love veggies so hopefully this one won’t be too difficult.

And…. I’m turning 33 soon. Whoa. Like. Whoaaaaaa. But Subhanallah, you know, I’ve had an amazing 32 years, and I can only hope and pray the rest will be even better. :D



Wednesday, May 6, 2015

WHERE WILL YOU BE WHEN THE BASS DROPS YOUR MEDS INTO YOUR BLOOD AND MAKES YOU ALL LOOPY?

I’m on drugs.

Medical ones. Obvs. Vat you thawt? Haw. Anyways, these ones are for the fibromyalgia that has been my near constant companion for about 5 years. Fibromyalgia is an annoying kind of disease. Cuz it’s not really a disease. It’s the term they slap on widespread muscular and/or skeletal pain that happens for no known reason. Well, they think they may know the reason – a physically traumatizing event like infection, injury, surgery, or prolonged psychological stress that ends up amping your nerve sensitivity to such a level that just existing hurts. But so far, no tests to prove it.

So yes, I hurt, all the time, in many parts of my body, for no obvious reason. I just wake up like that and have for a while now. It’s not the end of the world, but it does wear you down and sap your energy. After years, it starts to stress you out and mess with your sleep, which in turn, makes your symptoms worse. It’s a VICIOUS CYCLE. I love that term. I always imagine little circle monsters with sharp pointy teeth trying to eat themselves.

But because there’s no one real cause for fibromyalgia, there’s no one real cure. Just lots of things to try till hopefully something takes a bit of the edge off. I’d been ignoring mine for the past few years, but I’ve got a new doc who thinks that if she fixes my fibromyalgia, she can improve my quality of life. So hence, the new meds.

You get three options for fibromyalgia meds – pain relievers, anti-depressants and anti-seizure meds. The idea is that the pain relievers can either inhibit your brain’s production of the chemicals that cause pain and inflammation, or they can reduce the inflammation in the body that is causing some of the pain.  The anti-depressants work on the pain center of the brain, reducing the pain felt – though how isn’t fully understood. And the anti-seizure meds seem to interfere with the brain’s over-transmission of pain signals from the damaged nerves.

Having run the gauntlet of pain meds, without result, my doc has put me on the other two options – anti-seizure and anti-depression meds. And holy moly is this a whammy of a combination. The first day I took them, I actually fainted. Walked up the stairs at my house and blacked out at the top. Woke up to being surrounded by my three kitties, who I am sure were just concerned, not deciding if I was dead enough to nibble on or unconscious enough to sleep on. 

The next day, I made it to work ok, but spend the entire day like a zoned out zombie. Except I didn’t want brains, I wanted a bed. Desperately. I cut back to one of the pills, in the hopes that I could give my body time to acclimate before I tried the complete dose. It works – mostly. Some days I’m fine all day, and some days, I don’t know why, but the delayed release capsules will suddenly hit me with a big dose and BOOM. THE BASS DROPS. At random parts of the day, I get dizzy, fuzzy, and light-headed. Pretty much high (from what I've heard), but not in a remotely enjoyable way.


The first time it happened I was out with Mali and his friends for dinner and a movie and suddenly it was like I was stuck in plastic wrap. Couldn’t think or walk straight. Apparently I spent a good portion of the night staring at the floor and the ceiling and moving and speaking in slow-mo. Many jokes were had at my expense that I have little memory of. And may have eaten a really scary amount of popcorn.

I was good for a few days after that, but today, again, it hit me. Now I've spent half my day slowly blinking at my computer screen, stumbling off to get coffee, downing it, and then trying will myself into appearing present and upright. Except no amount of caffeine or sugar is helping. Every time I blink, I find myself loving the inside of my eyelids and wanting to hang out in there for a while. I feel like my head isn't screwed on properly and if I move too fast, it'll fall off. My breathing and heart rate are that kind of slow that happens before you fall into deep sleep. Given how sleep deprived I always am, this would be lovely if I was anywhere but not at my standing desk, in the middle of a hellishly hectic work week. Alash.

In the meanwhile, if any of you see a hijabi wandering around looking a bit tipsy, bumping in to walls, squinting at everything, and slowly blinking at the world, judge her not. She may be me. And me am are on the meds. 

*tips over*

Wednesday, April 15, 2015

Tales from the other side of 30

I was chatting with some of my younger colleagues the other day and they were discussing aging. As a bunch of 20-somethings, for them, getting closer to 30 is terrifying and strange. All those bewildering social expectations – marriage, babies, savings, mortgages, and careers. Plus the general horror of ‘getting old’. But you know, I’m over 30. Plus about 3. And for the most part, it’s not very different than being in my twenties. In fact, there are even some things that get better as you get older.

You stop caring as much about what other people think about you. I have always had pretty bad social anxiety, which I've poorly managed in the past by trying being as amenable, neutral or helpful to others as possible. For years I had a weird version of the Ella Enchanted curse where I couldn't say no. What, you need me to look after your Schiztu and give it daily baths while you’re away? Sure. You want me to write your thesis for you? Fine. Need me to expend all my emotional energy holding you together? Ok! But it’s gotten a lot easier to say no. Aint no body got time fo' dat. If you really need me, and you’re worth it, sure. But I gotta look after me too.  

You become more confident in what you know you can do and less apologetic or uncertain. The idea of taking charge in a group without being explicitly ordered to used to be absolutely foreign to me. But now, if no one else knows how to do it better, then I’ll do it. No prob. I've also been much better able to toot my own horn when needed and fight for my rights (though I’ll give myself a stress stomachache for doing it). I aint The Shit, but I’m not shit either.

You do actually know stuff, instead of trying to find your way in the dark. Wisdom. Yep, it’s real. Seriously, my brain shocks me with the stuff it’s filed away and offers up (usually) at the right time. Yes, I DO know how to make profiteroles. You want me to analyze your business plan, no prob. I can also sew and paint. You pick things up when you've been kicking around the planet for eons as I have. :P

You aren't as fussed about your looks. That crooked nose you've hated all your life is still there and hasn't resulted in an angry mob at your doorstep to burn the monster that you are. These imperfections have been with you longer than many dubious friends and often have caused less harm. You still aren't that ideal weight the magazines tell you to be, but somehow, meh. It’s ok. You've learned how to dress the body you have, not the body you've tried starving and punishing yourself into. Sure, there are wrinkles and white hair, but the good thing is, your eyesight isn't as sharp as it used to be either, so as long as you don’t look too hard, you look awright.

You figure out better uses of your time and energy. I am pretty sure 25-year-old Zee would be horrified with what I wear to work – basic skirts, blouses, simple scarf, flat shoes, and just a lick of make-up. It takes me 15 minutes from when I wake up to when I roll out. Why? Cuz it’s a job, not a fashion show, and I got nothing to prove. Plus, I like to sleep and waking up 30 minutes early to plan a cool outfit isn't worth my time. 

You’re no longer obsessed with 'defining' yourself.  In my twenties, it feels like I spent half my time taking stupid quizzes and psychometric tests. I seemed to mostly be doing things to prove a point to God knows who. I was so consumed with trying to figure out who and what I was. I was constantly trying to find ‘my measure’ – to figure out how other people saw me, and what it meant. Now, I dunno, I've just accepted that I’m just me. A tangled ball of experiences, neurosis, ideals and instruction. Nearly impossible to sort out so best to just let it be. I’m a mess, but everyone is. 

You have a ton of stories. Ok, the advantage of this is debatable. If you're not careful, you can sound like a 'topper' - or a compulsive liar, or just a windbag. But used with caution, they're good for parties and smalltalk. I can regale you with stories of food poisoning in exotic places, dodging howler monkey poop in rainforests, and various run-ins, nearly literally, with some heads of state. Living means trying stuff and sometimes failing, and hopefully with some maturity, you can find and share the funny. 

So yeah, being 'old' isn't so bad. Don't sweat it kids. :)

Monday, March 30, 2015

Where Zee discovers she cannot remember numbers correctly and may be a junk car

Yes, yes, I know. Long time, no update. I've got my usual excuses – I have been insanely busy and extremely stressed. You may pick one or both, whichever one gets me out of the dog house. Sorted? 


I had my six month post-brain-surgery angiogram last month and Subhanallah, my brain is all good. The repair is holding up, and none of the glue they sealed the aneurysm has leaked. And best of all, no new aneurysms – which is something I was a bit worried about, because I have basically constant headaches. 

The trip itself was epic, in all the usual ridiculous Zee ways. The day before I was to fly out, I got sick. Like, REALLY SICK. In fact, I haven’t been this sick as an adult, ever. I started feeling weird in the early afternoon and within an hour, I felt like a wobbly human radiator. I finally let Mali drag me to the hospital around 4:30, so we could be ok to fly out in the morning. Turns out I had a 103 fever and raging strep throat. The docs put me on intravenous antibiotics and fever reducer and after about 5 hours in the emergency room, let me go, saying I’d be ok to fly out in a few hours. I went home, went to bed, and then at 2am, woke up delirious. The fever was back and even higher. So back we went to the hospital, and this time I had to be admitted, as they couldn't get my fever to stay down. Of course, we missed our flight. I was stuck in the hospital for nearly two days (I think) riding the fever rollercoaster, living on lame liquids, and sporting a face so swollen I looked like a cavewoman. By the second day, I decided I couldn't keep postponing our tickets and appointments (the doc had a three month waiting list), so I told the doc “give me your strongest med and release me, I gotta get my brain checked.” He gave me the whole “I don’t approve of this but you're an adult” shpeel and let me go, 102 fever and all, and off we went. 

We got to Chicago and after a few days of recuperating, drove down to Nashville for my brain angiogram. Alhamdullilah, despite the bad winter weather and the rash of anti-Muslim hate crimes, we got to our hotel in Nashville fine. Checked in. Had my last meal before starting my pre-procedure fast. Went to bed. Woke up and headed out for the procedure, on time and all ready. Except, we weren't. Cuz I’m me. The Maflunctioning Robot.

We were five minutes into the drive when Mali says “huh, no traffic this time. Weird. Last time, there was so much rush-hour traffic going in to the city.” I thought about it and replied “It’s probably because it’s Saturday.” *pause* *blink* *think* “Mali, today is Saturday? But, the hospital doesn't do procedures on Saturdays.” *pause* “ZEE. WHEN IS YOUR APPOINTMENT SCHEDULED FOR?!” We stop the car and I pull out my appointment slip, which I’ve had in my purse the whole while, and check it. Lo and behold – my procedure was the day before. I had mentally misfiled the date of the procedure. We missed it by a day. Cue complete Zee meltdown.

We spent the rest of the day frantically calling, trying to see if we could reschedule. Finally, by the evening, the surgeon himself got back to us and told us he’d fit us in on Monday. We just had to wait around in Nashville – yes, the country music capital in that lovely state that only recently tried to ban Islam – for the next coupla days. Oh joy.

Mali and I spent the next 48 hours camped out in the hotel room, eating halal gyros cooked in a microwave, watching old episodes of Castle. Other than my regular "I CAN’T BELIEVE I GOT THE DAYS WRONG” pity partiesit wasn’t so bad. Though I’d be happy not to see gyros again for at least a year.

The angiogram procedure went well. They did the usual – opening up the femoral artery and then threading a catheter through my circulatory system, up to the base of my brain, where it released a dye for 3D imaging. Weirdly, this time I was awake on and off throughout it. I remember opening my eyes and seeing this big black circle over my face and thinking “WHOAAAA, IT’S THE MAGNET THEY USE TO PICK UP STUFF IN THE JUNK YARD. BUT I’M NOT A JUNK CAR. AM I?” Turns out it’s something called the ‘image intensifier’. I also remember periodically being told “Ok Zee, hold your breath now.” Apparently that’s so they could take a picture of my brain without my breathing shaking the image. This is the third angiogram I've had and they never had me do that before – dunno why this time. Ah well. I am also very proud of the fact that this time, I made sure not to try and talk while anesthetized. Cuz you may not know this, but your brain does not realize it's compromised and thinks it's A-OK and wants to be friendly and talk to people when it's drugged, so you mumble bizarro things at them and they try and respond with a straight face. At least, I think I didn't do it this time. =___= And this go round the docs and nurses made for damned sure that I didn't pop open the artery and bleed all over the place, by squeezing the gumption out of my artery for nearly an hour. It seems they still remember the last time I turned their bathroom and recovery room into a horror movie scene. 

So yes, Alhamdullilah, my brain is all good. I’m supposed to go back again in 6-8 months for another angiogram, and then another a year after that. The doc took me off of the heavier blood thinners I’d been on, so I am no longer constantly covered in bruises and randomly bleeding at the slightest provocation. Now, I get to what I’ve been needing to do for the longest – HAVE A BUNCH OF OTHER SURGERIES. Sad, but true. Smallish and medium ones. Inshallah. Worry not.

Monday, December 8, 2014

Work horses, house donkeys, and headless chickens, oh my!

It’s been forever and a half since I updated. As all of three of you may have noticed. It’s just been insanely hectic. The Husband and I have gotten up to some serious High Level Grown Up Shenanigans, that involve moving house, buying things like toolboxes and dining seating and navigating suburbia. And in the midst of all of that kind of malarkey, we became the central meeting point for two halves of my family, and are hosting nearly four times the normal amount of people that would reside in my house. For a post-brain-op, rare connective tissue disordered, degenerative spine diseased introvert, this is all rather challenging. Yet while I did hit a wall this morning – in the literal, not metaphoric sense – on my way to work, so far so good.

Which is, actually, pretty surprising. Y’know, that I’m physically holding up as well as I am. I’ve been unpacking, installing, cleaning, sleeping little and poorly, and running around like a headless chicken for about a month now, and other than some bug I've had for a week, I’m actually doing ok.  Subhnanallah. I had thought my days of being The Tireless Workhorse (AKA House Donkey), were over. Fo sho, no longer can I single-handedly pack and unpack a house in mere days, or stay on my feet morning till night running errands, or tire out my nieces and nephews playing in the park. But I can, it seems, still do a hellova lot. And for that, I am very very grateful.

This gives me hope that a lot of the weakness I’d been feeling over the past two years -- when I first slowed down because of spine problems, then thyroidectomy, then brain aneurysm -- is from deconditioning that is reversible. Honestly, a year ago, I felt like a 50 year old. Everything hurt. I was slow to get up and move. Bending or stretching was painful and often resulted in pulls. I had no stamina and even walking a short while could cause me pain that would last for days. For my sis Zeba, that progressive deconditioning has been going on for years and she’s not been recouping, so when I was also diagnosed with the same Ehlers-Danlos Syndrome she has, I assumed that would be my trajectory as well.

Of course, EDS, like pretty much every illness, effects people differently. It seems I won the lucky draw and got the rare brain aneurysm from mine, which no one else in the family has and may it Inshallah stay that way. And though I seem to be able to recover my lost strength and stamina right now, that may change, and I may hit a new phase later where I can’t any more. But I’m glad for what I have right now. I can run up and down the stairs in my new place, and clean house and unpack and run errands, though I hurt for it later. I’ll take what I can get and thank Allah for it.  J

On a semi-related note, here’s an interesting article from the BBC on why people with disabilities seem to be happier than those without: