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:


Monday, September 22, 2014

"I coulda been a contendah, but that damned gorilla kept throwing barrels at me!"

So, you may not know this, but I’m kind of a big deal.

Ok, not really. Or at all. Actually, that was just what my brain tossed up when I was looking for the words to say that: you probably don’t know this, but I’ve kind of lived through a lot. (Alhamdullilah)

Of course, that statement is relative, subjective, and various other qualifiers, but the general verdict of anyone who’s privy to the details, is that my life has kind of been an insane rollercoaster. At one point a few years ago, I had ticked off all of the Major Life Traumas on a stress checklist, save for the death of a loved one. And that was before my cancer or aneurysm. (Subhanallah.)

Why am I saying this? Because it sort of colors what I’m going to say next, which is: I don’t get the victim mentality.

I meet so many people and read so many blogs and tweets that seem to mainly moan, cry and fixate on all the ways they've been wronged, big and small. It’s like ‘The Universe’ (y’know, that faceless, hip, and secular entity that’s replaced ‘God’ to many) is out to get them, plaguing their lives with traffic that clogs their way, bosses who sabotage their careers, parents who willfully misunderstand them, etc. They seem to approach life from the perception that they are being victimized, lending everything around them the tinge of negativity. It’s as if they living their own real-life version of Donkey Kong, with some big mean gorilla deliberately and unceasingly throwing barrels at them just when they finally made it up a level.

And if it’s not the small daily injustices that they feel are getting them down, then it’s the big “I was not allowed to become as awesome and amazing as I could have been because the world did not give me a chance, denying me what I was owed.” That sounds pretty dramatic, but think about it. I bet you know someone who regularly blames someone – a parent who didn't support them, a teacher in college who brought them down, their lack of wealth/status – on being behind their sad state today. They could have had it alllllllll, rolling in the deeeeeep, except they were born under an ill-fated star that prevented them from getting all those things lesser deserving mortals obviously got.

I suspect there are two reasons why we fall into this self-victimization. One, is that this is just how some people get attention. “I am DYING from this cold! UGH. ” “I got four blisters walking to the Metro. Could this day GET any worse?” “My boss asked me to work late! CAN YOU BELIEVE THIS?” I’m not saying I’m immune to such pity-me posts – I can gripe as well as anyone. But if you’re doing this every day and little else, it may be that you never grew out of that baby phase of crying when you wanted your mommy to pick you up.

Yep, these regular complaints/kvetches are the equivalent of a toddler crying and pointing at their booboos to get attention. We live in an era where attention – in the form of 'likes' and comments – is currency, so Twitter and Facebook become the platform where we showcase life’s outrageous misfortunes. Complaining is an easy way to get people to focus on you – it’s the opposite of showing-off, after all. So if you’re sad sort of person who needs external validation but lacks other means to gain it from your peers/society – like accomplishments, sense of humor, charm, beauty – then attention-seeking complaining can seem an obvious route to take. 

The other reason people may have such a negative narrative to their existence is their sense of entitlement. If you constantly feel put out, offended or enraged, it seems likely that you are comparing things to the easy ride you assume you were promised. Because everyone in this great big world signed a “We shall not inconvenience/impinge upon/annoy (Insert Your Name)” agreement, which they are now reneging on and you’re within rights to complain about it. Yeah, no. We didn't. Life isn't fair. We've been hearing that since we were 5, but it doesn't make it any less true.

Let me say it again: life isn't fair. That means you were never promised or guaranteed any of those easy rides and good days you keep mourning. You got some good things, and you didn't get some good things. And the thing is, that’s how it is for all of us. I've genuinely never met a person who had it all. Even those with seemingly all of life’s gifts and material comforts can have heads and hearts full of misery, fear and insecurity. So, instead of complaining about all the things you DIDN'T get, do yourself a favor and enjoy and appreciate the things you did get. Because if there was a fairy godmother who heard your 'that’s not fair' whinges, and with the wave of her magic wand equally distributed all the world’s wealth, privilege, health, and beauty, I bet you’d be far worse off.

Of course, there are some people who genuinely do have it tough. They've been dealt a particularly crappy hand, probably through no fault of their own. And for them, I have more sympathy than annoyance if I find them hosting a pity party of one. Life can be damned hard. If I didn't believe in a religion that teaches that God doesn't place a burden on a soul greater than it can bear, and that it all difficulty will be rewarded in the next life, I’d have cashed in my chips a long time ago. So I know how life can get you down and make you feel like you've been unfairly targeted.

But you haven’t been. Unless you survived Auschwitz or something. Really. And interestingly, folks who actually have been through the absolute worst tend to be the least self-victimizing. You know why? Because they’re facing a real life-or-death situation, and they know that the victim mentality may cost them their survival.

Yep, the cost of the victim mentality can be that severe. When you go around thinking that your life and all it contains is constantly being sabotaged by various others, then you give power and control to them. On a basic emotional level, that’s going to constantly cost you your happiness and sense of wellbeing. And if you are being physically wronged/victimized, then believing that you are doomed to be a victim of these relentless bullies will prevent you from recognizing how and where you can put your energies to improve your situation. Think about it like this: in classic horror movies, which type of character always dies and which type lives? The ones that give in to fear and stop fighting usually die and the ones who keep looking for a way out are the ones who make it.

In short, the victim mentality is bad whether you've been really victimized or not. If you really are facing a tremendous challenge with nearly insurmountable odds – life threatening illness, financial woes, abusive relationship, etc. – the only way you’re going to get through is by staying positive so you can keep working towards different solutions. And if you’re an Average Joe who’s allowed themselves to fall into the victim mentality, then even your surmountable odds will prove overwhelming and cost you your happiness/security/health. Your negativity and self-victimization will turn normal everyday life dramas into unending nightmares.

Rant Over. 

Thursday, August 21, 2014

On cosmic hamsters, Grainy Golden Girls, and Swamp Thing

I think I am done complaining and stressing (for now. I suspect this is cyclical and I am but a senile hamster trapped on this cosmic running wheel). Life is a mixed bag for all of us. No one gets everything. The hope is that no matter how insane your mix is, you at least get something in it that you value, whatever your values are. Luckily for me, I value my faith, and poor health not only does NOT reduce my faith, it can actually increase it. So there.

I am now trying to see what I can do to make things a bit more manageable. I’ve started trying to slowly reclaim my lost strength and stamina. A year ago, I worked out over an hour 5 days a week, but I’ve not done much of anything for about 6 months, after I started feeling my aneurysm twinge to the beat of my pulse. Earlier this week I finally returned to the gym, and have begun the agonizing process of trying to get fit again. I'm still limited to lifting no more than 5kgs, so I’ve started with walking on the treadmill at a brisk pace for 30-40 minutes. I stop when the skin on my feet starts to blister or rip (a lovely EDS side effect). Aside from the foot pain, I feel fine. Or rather, I felt fine. Until the day before yesterday. My hips, back and neck have been on fire ever since and I’ve got a limp that’s one part cowboy one part got-shanked-in-Sing Sing. I guess that’s either my fibromyalgia or my arthritis. Take your pick. Whee. :D

I’ve read a lot about the impact of food/nutrients on the severity and manifestation of various illnesses and symptoms and am looking to cut out the 'bad foods' and replace them with good ones.

I kind of grew up on aspartame (my well-intentioned mom’s attempt to keep her kids from sharing her weight problem), but have been avoiding it for the past year. The cancer in mice research you once scoffed at before somehow becomes much more ominous when you’ve had cancer yourself. So I take Stevia in my tea and coffee now and try not to rely on ready-made diet sodas or foods that contain aspartame or its ilk.

I’ve done low-to-zero carb for months on end and have not noticed any change in how I feel, so I’m not actively trying to cut them out now. I don’t eat a lot of bread or rice as it is, but I am going to try to avoid more processed foods, like cereal and crackers. And while I’m not gluten intolerant, there seems to be a lot of claims that our wheat reliance is not good for our health, with at least some research supporting that it can worsen IBS symptoms. I do have IBS-like symptoms often, which is pretty normal for EDS, so I’ve been looking at the alternatives being touted in the ‘ancient grains’ trend.

The ‘ancient grains’  trend claims that the grains our ancestors ate are better for us because they’ve not been selectively bred and genetically modified over the centuries like wheat, corn and rice. Debates on the dangers of GMO withstanding, I figured it’d be worth trying them, especially as some have more protein, insoluble fiber and nutrients than the usual stuff. So I’ve picked up a bunch of locally-available ‘ancient grains’ – quinoa, amaranth, barley, and millet – with the notion that I will start working them into salads and making ‘rice’ with them. So far though, they’re chilling in the cabinet, having ancient grain conversations. Y’know, catching up on what’s happened since Roman times, complaining about grains these days, worrying that Frankenfood is taking their jobs, etc. I imagine something like Grainy Golden Girls, with more patrician accents.

I also want to eat more highly nutrient dense foods, in the off chance that somehow my poor health is being exacerbated by a missing nutrient or two. Though I eat healthy, I tend to eat repetitively, and have had a diet based around apples, cabbage, chicken, coffee, popcorn and lettuce for years. I had a bunch of superfood powders brought from the US – acai for its highest Oxygen Radical Absorbance Capacity among fruits, flavonoids, and anthocyanin effects; goji for its beta-carotene, immune system support, energy and improved gastro function; kale for its vitamins K, A and C, antioxidants, iron, fiber, anti-inflammatory Omega fatty acid; spirulina for its protein, amino acids, gamma linoleic acid, chlorophyll, omegas, calcium and tons of other nutrients/vitamins; and wheatgrass for its vitamins A, C, and E, Iron, iron, calcium, magnesium, amino acids, and the long list of diseases it supposedly fights. A spoonful of those all go in the blender with aloe juice, coconut oil, gelatin, green tea, gooseberries, spinach, cucumbers, banana, carrots and agave – all things that have valued nutrients. I give it a whirr, and the resulting dark green sludge is my breakfast of champions. With that unbeatable mix, either I start feeling better, or I start becoming Swamp Thing. It’s a win-win.

Bottoms up!  

Wednesday, August 6, 2014

References to TMNT, The Simpsons and Star Trek all in one depressing blog post

It's not been a good week. For reasons unknown to me, it seems like my body has finally woken up and been like: "DAYAMN. I DO NOT FEEL GOOD. LIKE WHAT THE HELL MAN. DID YOU SLIP ME A ROOFIE? HOW LONG WAS I OUT? WHAT'S WITH THE NEW SCARS? WHY AM I ALL BRUISED? DUDE, WHAT DID YOU DO?! HOW COME EVEN MY HAIR HURTS? HAIR DOES NOT HAVE NERVES. I WOULD KNOW. I GROW IT. IT SHOULD NOT HURT. OW. OK EVEN COMPLAINING HURTS. OWWW!" 

Basically, yeah, everything really hurts. Body wise. Brain is ok. Brain is humming along, still throwing out random spikes and jolts, mushing my words and occasionally going all throbby, but otherwise ok. It's had its moment, proved its point, and doesn't need the attention any more. But my body is like: "MY TURN. WHEWWWW."

And along with the body pain, there's weakness. My legs seem no longer up to the task of carrying me around. They go wobbly if I walk or stand for any great length of time and everything tires me out. Even sitting. For someone who's been athletic and strong all of her life, this seems like such a huge betrayal. Suddenly, I'm Krang. I'm just a grumpy vulnerable blob of talking brain that is marooned and fairly useless unless my red briefs wearing robo-body plays along and does my bidding.

What bothers me about all this is that, I don't know how and why it's happening. I didn't feel this bad in the weeks after my surgery. I didn't even feel this bad last week. But this week, it's like the rug's been pulled out from under me. And I can't figure out why.

My worry is, this isn't a side effect of the brain surgery I had last month. I worry that it's the slow degradation that my sister Zeba has been experiencing over the past 4 years. You know, the one she 'came out' about in that Muslim Matters post. The one where she shared that she's not gay, but she could be dying. Yeah, that one. 

You see, Zeba and I have been competing in medical misadventures for the past few years. Not intentionally of course. That's just our running joke, so's to not cry.

Here's the summary: I threw the gauntlet down with scoliosis and spinal degeneration about 5 years ago. She upped it with her own scoliosis, extra ribs, and osteopenia. I started getting chest pains and muscle and ligament tears. She started spraining and breaking things. I'm diagnosed with fibromyalgia and spondylitic arthritis. She's diagnosed with arthritis and Sjogren's Syndrome. I develop bursitis in my hips. She can't go a few months without bronchitis or laryngitis. Doc finds lumps in my thyroid. She starts blacking out for no reason. The degraded discs in my upper spine start pushing into my nerves. She starts getting progressively weaker and losing nerve function. Doctor tells her he doesn't know what she has, but it's probably terminal. I have malignant cancer. New doctor tells her he thinks the unknown ailments are Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachychardia Syndrome (POTS). When being checked if I have it too, doctors discover I have a brain aneurysm. As well as the other two.

TL; DR version: We're a few illnesses off of Monty Burns Disease. You get the picture.



Where we are now, is we've both been diagnosed with EDS and POTS, which explains about 90% of the things that had been going wrong. But, it doesn't explain everything. It doesn't explain the muscle weakness and loss mobility that's been happening to her, and now, I fear may be happening to me.

And that's something I have not yet made my peace with. Hell, I haven't made my peace with Zeba's severity of illness, and that's been happening for a few years. I keep hoping and praying and researching for some kind of explanation and solution. But I haven't found one yet. And now I'm worried it's catching up to me too. Going out with a subcranial bang, I was ok with. A gradual progressive weakening and loss of function, not as much.

I guess I know what I have to do. Which is get over it and stop stressing. Allah gives and Allah takes. This life is a test, and everything I am given in it, even my body and my health, are just a loan that can be reclaimed. The goalposts have not moved. They remain as living this life to the best of my ability in pursuit of the approval of my Creator. That doesn't require strength or mobility. But it does require my faith. And that I have to make sure doesn't get eroded or damaged by life's difficulties.

Turtle Power.



Tuesday, July 22, 2014

BRAIN: RED ALERT RED ALERT. PERIMETER HAS BEEN BREACHED. RELEASE THE HEADACHES.

It’s now been 20 days since I had my brain fixed. Which I typed as ‘fidex’. Which is one of the odd post-brain surgery kinks that I am still discovering and hoping will vanish soon. But Alhamdullilah, time has just flown by. And yet, also, I still feel very much recently invaded and glue rocked.

I tried taking myself off my heavy duty pain meds 5 days back, in the hope that I could manage without them to do the remaining Ramadan fasts, and also, preempt any dependence on these potentially habit-forming happy pills. That was quite an interesting wake up call. Till then, I was pretty sure that my surgery was no big deal, and I was quite recovered. But without a 4-times daily influx of barbiturates, hot damn did I feel poorly.

Like, whoa. Amazingly weird headaches, sharp eye pain, strange squeezy feelings in my brain, plus full body ache and shocking fatigue. The first day off the pills, I couldn’t get myself out of bed till I’d clocked over 12 hours of sleep. The second day, I did a solid 11, and I think I also took a 3 hour nap in the day. The third day, I tried replacing my barbiturates with a barrage of OTC pain pills. Max doses of Panadol and Aleve just took the edge off it and barely got me through the day. And then, on the fourth day, not even the total quota of Panadol and Aleve could dull the pain in my head enough to let me sleep, so I took one of the barbiturates. And the next day, I had to do it again. Sigh.

I know, taking your prescribed pain pills is nothing to be ashamed of, weak, or immoral. I just don’t like to be dependent on meds, especially for pain, which I find my body tends to acclimate to in time anyways. And plus, I think I’m just always the kind of person who is very much wanting and willing to believe I’m cured and better. I don’t need anything. I’m fine. There’s nothing wrong with me. Etc. (Which is, on a side note, why I always take it very personally when people imply that I’m a hypochondriac or it’s all in my head. Cuz punk, I did not fabricate my lab results and diagnoses, and any given week I soldier through what would knock you flat or send you running to the ER.)

So now, I am ‘taking it easy’. I surprisingly took the full extent of my medical leave, till July 22nd. Plus I have permission from my boss to work from home till the Eid break ends in 13 days. I just popped in to the office today to sign some forms and show my face, so they know I’m here, alive with new and improved rock brain, and back on the job – albeit, with limited eyeball battery life and energy. Also, cuz I am a nutter with guilt issues and the great kindness they have shown me in facilitating my surgery has left me feeling extremely indebted. So I will work from home on the book the office is still waiting on me to finish and intermittently respond to emails and edit requests. And when needed, I will take my barbiturates and not beat myself up about it. Scout's honor.

In the meantime, I am hoping my brain stops throwing a fit about its perimeter being breached after 31 years of impenetrability and the installation of outsider in its midst. The headaches, exhaustion and speaking/spelling/writing issues I’ve been having are harshing my chill. I’m a writer, I have to at least be able to get words close enough for spellcheck to swoop in and save me. Lately, she’s as lost as I am. If Microsoft Word, my near constant companion of the past 12 years, could speak, she would, in the voice of Sarah Vowell, say: “Dude. I cannot even begin to fathom what you are attempting to spell there. Do you want me to switch to a Klingon dictionary?” The doc says the pain and weirdness should subside over time, as my brain adjusts to the 10mm glue rock left behind in my brain and my body recovers from the intensity of having two large catheters thread through my circulatory system. I’m just impatient and slightly delusional.

But again, I am also extremely grateful. I could have died. I didn’t. I could have had brain damage. I didn’t. I could have suffered loss of vision in my left eye from the procedure. I didn’t.

I’ve just got to wait out the healing process and Inshallah I will be back to my usual mildly maflunctioning self soon enough.

Monday, July 7, 2014

The Things One Finds On Youtube....

One of my science writer fellows is the neuroscience writer for The New York Times and she sent me a video explaining the mechanics of Onyx embolization, if you are so inclined. Have it it.


I Present To You, The Newest X-man: Rock For Brains


Good news: I live!

Subhanallah.

I had the Onyx embolization procedure of my aneurysm last week and now in place of an aneurysm, I have a 10mm glue rock in my brain. I shall henceforth be known as Rock For Brains. Yes, I am finally a Real Pathan. :P

I guess I should share all the interesting stories. The day before the surgery, I had what is called an angiogram to give the doctor an updated image/map of the aneurysm. I've had one before. They're not fun but not a huge deal. They sedate you, open up your femoral artery, thread a catheter through your circulatory system up to the base of your brain, where they release dye and then take contrasted pictures. Or something like that.

In this instance though, because they were going to open up my femoral artery the next day anyways for the actual aneurysm treatment, when they finished, they didn't stitch the opening closed. They just put pressure on it to make the body suck it shut, so to speak. That usually works fine. But me being me, I don't get to do anything the usual way. So when they finished the procedure and I completed the supine recovery, the time came to stand me up and see how I was doing before they discharged me. There were two parts to this challenge: peeing and not bleeding. I passed the peeing one. I failed the not bleeding one.

Yep, my femoral artery popped open mid pee test, resulting in my life's second and hopefully last "Hey This Looks Like A Horror Movie I Once Saw" experience. My leg was cascading blood. Like a slow red waterfall. "Ok. Ok. Ok. You're bleeding. Just stand up. Flush the toilet. Wash your hands. Clean up some of this blood. You don't want to scare the next bathroom user. No. No, never mind. You're bleeding on what you need to be cleaning. Just get up and get out of the bathroom. Who cares if it's rude to leave the toilet unflushed and covered with blood! They will deal with this." So I stumbled out and said "Uh, nurse. I'm bleeding." And she said "Why yes you are!"

I had great nurses and this one was the best. She was this tall, broad, wry Queen Latifa, with braids. She picked me up and set me on the gurney and tried to stop the bleeding by..... crushing the artery shut. Manually. So I had Nurse Dorothy squeezing the life out of me for 10 minutes before she decided it wasn't working and she had to call in The Marines. The Marines in question was the 6'3 kindly countryboy who I guess was the interventional radiologist or head nurse or something - I never did find out exactly what he did or his last name, just that he was The Stuff and named Danny. Danny applied his version of the Jaws of Life to my artery and managed, with bone crushing compression action, to get me to stop bleeding all over everything. "I am so sorry. That is definitely going to leave a mark." And it has. But Alhamdullilah.

I went back to our hotel for a night and then the next morning, I was to have The Real Deal - Zee's Brain Repair.

The aneurysm embolization procedure is endovascular, so the doc went in from the same femoral artery opening. The angiogram the day before had revealed that my aneurysm had an aneurysm - called a daughter aneurysm - resulting in congratulatory messages to our folks about their new grandparent status and one from Zeba saying "Ha! Your aneurysm had kids before you did!" Aside from the need for us to start saving up for a tiny deadly jehaiz/dowry, having a daughter aneurysm meant that my aneurysm was working towards a rupture. The weak part of my artery artery that bubbled out to make an aneurysm had it's own little weak corner that was stretching my already compromised tissue further. So, not great news but didn't change the plan of action.

And that plan was to go in from the femoral artery opening with a big and special catheter, enter my brain, there inflate a balloon below the aneurysm, and then pump the aneurysm full of Onyx - a type of surgical glue made to become solid on contact with blood. When the Onyx hardens, then they deflate the balloon and evacuate my brain. Mid-way through the procedure, I was woken (though I have no memory of this) to check for paralysis, brain damage and loss of sight. Alhamdullilah, I have none - at least none that I didn't have before anyways. :P So the aneurysm was defused before it could rupture and I suffered no brain or nerve damage, Alhamdullilah. Alhamdullilah. Alhamdullilah.

While they were in my head, the doc discovered that I had developed a second daughter aneurysm in the 24 hours since he had checked last, which means I was very very close to rupturing. I probably would not have made it another week without the aneurysm popping. Classic Zee, cutting it so close to the wire. I did have a scare when I came out of the OR, as apparently, when they took out all the tubing they had in me, they badly scraped/bumped my throat and sinuses. I woke up in the OR recovery area feeling the steady flow of blood down my throat, and scared that it was coming from my brain, decided the best way to get medical attention was to shout "Guys? GUYS? GUYS? UM, I THINK I AM SWALLOWING BLOOD. IS IT POSSIBLE THAT YOU CUT ME AND THIS IS COMING FROM MY THROAT?" God knows why the word 'nurse' did not come to mind, and why I become so polite/legalistic when facing medical emergency but I hope the nurses can laugh about it.

The next thing I know I was violently vomiting blood everywhere, which I proceeded to do for the next few hours. It ended up taking 12 hours for the bleeding in my throat/sinuses to stop, during which time I coughed, gagged, vomited, and sprayed blood in gradually diminishing amounts. My thoughts during one of these bloodbaths? "Hehe, it's like I have Ebola. WAIT, DON'T TELL THEM THAT. THEY MAY QUARANTINE YOU." You see, my brain, beyond being a suicidal jerk, is also quite an idiot. Anyways, when I was taken to my own ICU room, Mali finally was able to see me, and with huge eyes in a pale face, said "you look beautiful." I was laughing and calling him a liar when my mom came over and revealed the extent of my movie monster visage: "Your lips, teeth and face are covered in dried blood. We'll try and clean you off." They ended up keeping me in the hospital for 3 days till the bleeding in my throat and sinuses slowed enough to be a non-risk - but I suspect it was really to prevent rumors that the zombie-pocalypse has come.

Now, for the next 6 months I'll be on the blood thinners plavix and aspirin to reduce my risk of stroke, clots, etc, so I've been told to avoid smashing into things. That lasted about 2 days. Furniture, walls, and doorknobs are out to get me. I am considering making myself a bubblewrap suit of armor. And after a day of wondering why my brother has an indoor firefly infestation, I have realized that these are the visual auras/distortions that the doctor warned me about. I keep seeing bright sparks shooting past, lending me unnecessary dramatic special effects to things like brushing my teeth, which should go away in time. I'm also on a barbiturate for the migraines from my incensed and possibly still swollen brain but am up and around, shuffling, (a bit zombie-like, I admit, but I promise I don't crave BRAAAAAINS) around to reduce the risk of clots in my legs.

I will probably fly back to the US in 6 months for an angiogram to see how the Onyx has settled in, and am due to have other checks at the 1 year and 2 year mark. As far as long-term prognosis goes, the doc says I have less than a 1% chance that these Onyx filled aneurysms will recur or rupture, but a fairly significant chance I will have another aneurysm elsewhere in the years to come, on account of the vascular fragility I have from Ehlers-Danlos Syndrome. I am hoping though, that my brain has learned its lesson and will stop trying to kill me, as that is a very poor way to get attention.

So that, Inshallah, is the story of the time my brain tried to kill me and we fixed it by putting rocks in my head.

The End.

Sunday, June 29, 2014

Lesson 86 Of Why Zee Hates To Fly

In Abu Dhabi, when you are traveling to the US, you do your American security check before the flight. It's supposed to be more convenient than having to join the queues of hundreds/thousands going through that process when you land in the US. 'Supposed' is the word I stress, because in our case, despite the fact that we arrived 2 hours before our flight, were taken to the front of every line on account of the fact that I was gimp in a wheelchair and departure was delayed to give us an extra 1.25 hours of time, that pre-check took so long that my husband Mali missed our flight.

At the last stage of checking, they had sent Mali to the extra screening room 'just for a moment, to clear up a glitch around his name'. My mom and I opted to go with him, hoping the sight of his invalid wife and fluffy blonde mother-in-law would speed up the process. After an hour of waiting there, in that room full of scared, stressed and confused people, we wised up to the fact that it would NOT take five minutes. Yes, we're clever like that. Mali approached the security staff and explained that I was travelling for a critical brain surgery that couldn't be delayed (the doc is going on holiday right after he fixes me up), and Mali was my husband/caregiver/driver/handler who had to accompany me. They said "we're already working on you, don't worry." We waited for another half an hour, until just 10 minutes before the final boarding call was to go out, before Mali said "Zee, you and mom are going ahead without me. I'll come as fast as I can. But you will not miss this flight and you will not delay your surgery. Go." Which is when I lost it.

I am a pretty rational and calm person. But my aneurysm treatment has been long overdue, arranging it has been insane, and this week in particular has been a nightmare. Mali likes to joke that he's my trophy husband who I married for his body and Indian passport, but the truth of the matter is, Mali is my rock. While I appear to be some kind of stoic Vulcan to some folks, internally, I'm more like the love child of a Klingon and a Ferengi with the mixed-race-kid usual sides of severe anxiety and neurosis. If you're not a Trekkie and didn't get that, basically I'm kind of a wreck. But Mali somehow manages to pull me through, calm me down, and lend me some of the confidence he exudes. So to be separated from him, just before I fly out for critical surgery, with no idea when he'd be cleared to fly or if he'd be able to join me before they poke things into my brain, was kind of more than I could handle. I likely left a trail of tears as I was wheeled out of the special screening room to try and catch my plane.

When my mom and I got to our boarding gate, we found out the flight was delayed by at least 30 minutes. Surely, it would mean Mali would have enough time to clear the check and join us. I spent the next 1 hour and 15 minutes sitting outside the boarding gate, scanning the crowds, waiting to catch the relieved and smiling face of my husband among the final desperate stragglers to our flight. Minutes ticked by, but never did I see him. The airline agent who'd checked me in and cleared me to fly with the airline doctor (apparently, such things are required when your brain risks implosion), kept promising me he'd hold the flight and push for Mali to be sped through . He made many calls and kept coming over to reassure me everything was being done and Mali surely join me soon. Even the porter who'd been pushing my wheelchair sped off to find out from the porters inside the screening room how long Mali would take. And of course, all the while, Mali and I were messaging each other on phones with dying batteries and rapidly depleting credit, sharing updates and worries. "Don't board till they force you." "They said they'll be done soon. Just hold on." "I'm the last one from this flight waiting to be cleared. I must be next." Finally, they could hold the flight no longer, and I had to be boarded. Once again, like a very sad gimpy snail, I am certain I left a slippery trail behind me as the porter pushed my wheelchair to the door of the plane.

Even then, I kept hoping Mali would make it. Loading the baggage and things takes time. We'd have another 10-15 minutes before they shut the door. So again, I sat, anxiously staring down the plane aisle, hoping Mali would come racing through. But he never did. "I'm trying Zee. They said they're working on it. Just tell me when the plane starts taxiing so I know when it's game over." My heart sank when I heard the door of the plane shut. But I held out hope even still, till the plane finally pulled away from the airport and began to taxi down the runway. Game over. And then I really cried.

I know it's silly. What's the big deal about having to fly without your husband? It's just a 15 hour flight and I've flown alone dozens of times. Mali would probably catch another flight in a day or so and join me in time to drive us to the hospital in Nashville or at least be there before the procedure starts. But I guess when you've been through so much stress and worry for so many days, logic is no longer enough. All I know is that I felt like they'd ripped my heart out, cut off my oxygen, sunk my battleship, and other such clich├ęd metaphors. I'd been leaning on Mali for strength and suddenly he wasn't there and understandably, I toppled over. I was pretty much a mess till the seatbelt sign switched off and mobile service was restored to show me a message on my phone from Mali saying "Don't worry, I'm coming on the next flight. You were a strong woman before I met you and you still are. Be strong now and I'll be there as soon as I can be." So I was.

By the grace of God, Mali managed to catch the next flight on the following day and we just brought him home from the airport, Alhamdullilah. Tomorrow morning, Inshallah, we drive out from Chicago to Nashville, where I have my first diagnostic procedure on July 1, and my brain fixing surgery on July 2. And Inshallah, I'll have my rock with me, to hold me up and see me through.

The next time someone asks me why I hate to fly, I am going to send them a link to this post. You have been warned.

Thursday, June 12, 2014

The Adventures of New Age Amish and Oversized Mexican Companion

So, Alhamdullilah Alhamdullilah Alhamdullilah, I’ve been given the green light for the aneurysm surgery in the US.

It took 6 months and an unknown number strings pulled, but it came through. Which is great, because after the second month of waiting, I’d given up on that fight and had tried to find other options. With the number of hospitals and doctors I emailed round the world trying to find neurosurgeons who could fix my brain, I am pretty sure now I’m on Snopes list of scams, right up there with the Wealthy But In Need Of Your Assistance Nigerian Prince. Especially given that so very few of the folks I contacted responded, and no one satisfactorily. So if this approval hadn’t come through, I may have gone back to Singapore for hakka noodles with a craniotomy on the side.

For the record, I am not a scam or a spam bot. I am just a modern day Marco Polo, trying to weather the choppy and dark Seas of Internet to discover Medical Tourism Success, so please do download the angiogram and MRI files I sent you, they’re not viruses! Dammit, I am a trailblazer and pioneer! One day, in the future, they may name a special Cerebral Aneurysm Spa Hotel Flight Package after me. Or maybe I'll just banned from hospitals around the world. Fame is fame. :P

Anyways, now I am once again facing my old nemesis of Logistics. Oh, she is a cold and cruel beast. I have to book tickets from Dubai to Chicago for myself, my husband and my mom. Then I have to figure out how to get us to Tennessee in the most affordable and least stressful way possible – difficult given it will be Fourth of July Weekend. We may end up doing a ROAD TRIP. PARTY TIME. EXCELLENT. I like road trips. Though I am a bit scared of crossing the Mason Dixon Line with my headscarf and brown husband. Somehow, I think they’ll know we’re not New Age Amish with Oversized Mexican Companion. We’ll have The Mormon Momma run interference. “Do you have a moment to talk about Christ?”

Once in Tennessee, I have to make arrangements for my mom to stay someplace nearby so she can come and go between there and the hospital easily. Mali is planning on camping out on my hospital room floor, as he did in Singapore, like my own personal guard husband. My mom will come during visiting hours to keep us company. My hospital room is going to be like Weekend At Bernie’s, but with the deadness dialed back to anesthetized – which is a word I cannot spell no matter how many times I’ve had to experience it.

As this procedure is of the less invasive type I was trying to find in lieu of the craniotomy, thankfully I will be out of the hospital fairly quickly, Inshallah. I think I’ll be discharged within 3 days. I’m supposed to get some rest time in before I take my brain into the upper atmosphere so after I am discharged we drive back to Chicago and give my brain some time to decide how it likes the internal remodeling. Then it’s back to Dubai for the rest of Ramadan, Inshallah.

*whew* 

That is the plan anyways. I hope and pray it all goes smoothly.  Man plans, but God is The Best of Planners.



Tuesday, March 11, 2014

Hunger: Best seasoning. Rust remover.

In an attempt to bring more religion into my life, I’ve decided to try a diet that sort of follows the Sunnah. It’s the 5:2 or Fasting Diet, where you fast two non-consecutive days a week and only have 500 calories on those days. The Prophet Muhammed (peace be upon him) typically fasted two days a week – Mondays and Thursdays – and as a practice, only ate to fill one third of his stomach with food.

So when I read about the 5:2 diet having actual proven health benefits and results, firstly I thought, OF COURSE IT WOULD! ISLAM IS FULL OF SCIENTIFICALLY-BACKED CONCEPTS! (We supposedly backwards and barbaric Muslims are always happy for a bit of empirical validation of our beliefs). And then I figured, I should try a version where I follow the Sunnah as much as I can. So for me that means I am doing a proper Islamic fast on Mondays and have no more than 500 calories when I break my fast in the evening. And as we host a family dinner on Thursdays, which would be hard to do when fasting and less fun limited to 500 calories, I do the normal 500 calorie diet on Wednesdays instead.

It’s been about 4 weeks, and Alhamdulillah, so far so good. I’ve lost a bit of weight and I am not as constantly hungry for carbs as I usually am. But what I like most about it is how every Monday, it’s like the first iftar of Ramadan. Because I only do one proper Islamic fast a week, my body can’t get accustomed to fasting as it does in Ramadan, where it becomes easier as the days pass. That means every Monday is a struggle – I am hungry, headachy, emotionally ragged and exhausted – and every Monday night, is a revelation. 

As I finally get to eat my long-awaited 500 calorie meal, suddenly I remember how amazing the blessing of food is. Fasting shows you the taken-for-granted access and reliance on food and drink you have – throbbing as you are through the day for the want of caffeine, water, sugars, salts and satiation.  We don’t have to go to Mongolia for that Mongolian beef –  we can order cuisines of every kind to be delivered right to us at little cost. And there are numerous cafes with caffeine on offer in every make you can imagine. There are hardly any foods you can’t get with a bit of trying and nothing is rationed.

Which is not the case for many many people in the world. While we get to put our ‘suffering’ to end when the sun sets, for about 842 million people in the world, their starvation isn’t voluntary and doesn’t have a pause button. In the developing world, nearly 15 percent of people live with chronic hunger. Globally one in four children has stunted growth due to insufficient access to food and poor nutrition is the cause of half of deaths among children under five. 

These are numbers we hear all the time without much reaction, but when your memory of how awful it feels to be hungry all day is so fresh – refreshed every week in fact – it becomes harder to turn a blind eye. When you fast, you not only rediscover how amazing food can taste (“Hunger is the best seasoning”) and appreciate your access to it, but more importantly, you get a glimpse into the horror of unassuageable hunger and starvation. That is one of the best things about Islam’s tradition of fasting – it not only can lighten your body, but it can also clean off the rust on your heart. And that’s some weight we can all afford to lose. No wonder why our Prophet lived like this. :)

Sunday, March 2, 2014

On the theory of loss and hope

Do you ever just sit back and marvel at all the things in your life that got you where you are today? The lucky breaks. The miserable mistakes. The pleasant accidents. The uncountable little blessings and trials that paved your way and made you who you are? The mind boggles.

When I was in my early 20s, I thought I had an idea of my story. Who I was. Where I came from. And where I was headed. As if I had read my stars and could plot my course. I was such an idiot. A few years later, life would get so utterly and jarringly turned upside down that I no longer had any idea what it was all about. The only thing I had left was hope, as terribly cliched as that sounds. Hope that, though I apparently had gotten much of my life wrong, that it wasn't all for nothing and it'd come round.

And you know, it did. In ways I could never have guessed at. I'd grown up believing that God takes things away sometimes to give you something better in its place. You know, like, I didn't get into the fancy school but I did develop a lot of street smarts in the one I went to instead. Or, like when I'm trying reconcile my shallow wants, God didn't give me great beauty because He knew it would put too many temptations in front of me. But it was nearly always theoretical. I never had anything bloodily wrenched from me, and out of me. I never had to experience the death of a loved one, or the loss of my savings, or the apostasy of a family member. For all my life's roughness, it was without tragedy.

But then it happened, and I lost something so massive it took with it my sense of worth, my strength, my compass, my confidence and my entire narrative of who I was, and left only that hope that it would make sense one day. And I lived on that hope for a while as I slowly sifted through the wreckage and put myself back together from the few sound pieces of me left.

And today I can say with as much certainty as someone who's self-inflicted scars are still pink, I think I know why it happened. It was one of the many pieces of pavement on my path. A path that just a few years later lea me to where I am today, with a life so much better than the one I'd lost years before.

Subhanallah. I can't thank God enough.

Sunday, February 9, 2014

It's a fair cop, but Charles Dickens is to blame

I have to say, I'm kind of disappointed. When I was a kid, given to reading bleak and dramatic fiction, I didn't figure having a potentially life threatening condition would be so blah. Imagine you're a sad, misunderstood, frustrated emo child as I most definitely was, and you feel no one gets you and no one appreciates you. You live in a miserable little cocoon, unloved by all, until one day, you find out you're dying. Then, suddenly, everyone realizes how much you mean to them. They realize the errors of their ways and want to make up for lost time. And even better, somehow your sudden receipt of an expiry date crystallizes all your needs and ambitions, allowing you to rise above the confusion and uncertainty to be the best version of yourself possible. Gone are your petty frustrations and insecurities. The illness and your ticking mortality burn you clean of all but your best qualities. As the flame of your existence slowly extinguishes, you spend your days being as good, kind, and productive as possible, leaving behind a legacy of art, poetry and literature that will be remembered for generations to come.

The End.

Reality has been rather different. Of course, I am not 'dying' as such. Yep, I can somewhat hold out hope that THAT is wrench in the works. (Sigh, yes, I'm that warped.) Not that I'm a lot more mediocre than I dreamed I was. But yes, despite two life threatening diagnoses in a one year period - malignant thyroid cancer over the summer and a brain aneurysm in the winter - I have yet to achieve Dickensian hero status. I am not a better wife, daughter, sister, aunt, friend or Muslim. And while a few old and nearly forgotten friends have come out of the woodwork to tell me how much they care, a bunch of what I thought were fairly solid bosom buddies haven't even poked me to see if I'm still ticking. Ah well. And, as this blog has so amply demonstrated, no brilliance has poured forth from my fingers. While my beloved big sis Zeba has managed to turn her years of terrible/terminal health into beautiful works of love, intelligence and faith, alls I got is this blog and a website that I can't get off the ground. Seriously Zee, whatta fail.

But eh. I'm working on it. I've always believed that who we are is up to us. If I want to produce something valuable and useful, or do acts of service for those I love, then nothing will hold me back but my own lack of will. So, I shall continue to publicly humiliate myself with what will, in lieu of any other forthcoming efforts, be the threat of my 'legacy'. That is, writing this cruddy little blog. And, if writer wisdom holds true, eventually, I will drain all my latent brain crap and start to tap into something a bit more substantive in time. Or go out in a blaze of ordinary ordure. 

Wednesday, February 5, 2014

Give me liberty or give me death but don't give me logistics

So my aneurysm surgery trip didn't quite work out according to plan.

I got to Singapore fine - brain didn't go off as my plane lifted off, leading into a dramatic mid-flight death scene as had been feared. The nurses prepped me for the first diagnostic surgery. Stuck a canula in me. Loaded me up on meds. The works. Then the next day the docs came in and said "wait, you know that condition you told us you had way back when you contacted us two months ago, we finally got off our butts and looked into it and apparently, it's a big deal! People with that condition hemorrhage and rupture like crazy. It's a bloodbath in there! We can't do your procedure!" Ok, well, they didn't say it like that. But you get the gist. 

Then began 10 days of all kinds of ridiculous tests. I saw geneticists, cardiologists, dermatologists, allergists, opthamologists... I got MRE-ed, X-rayed, 2D echocardiogrammed... they came and took my blood so often I even stopped waking up for it when they'd come to take it in the night. In the end, they decided that my connective tissue disorder was too potentially scary to allow for any endovascular procedures, and oh, even more problematically, I'm allergic to the metal that the stent that was going to go in my brain is made out of. 

To the Singaporean doctors' thinking then, that only left one last possible treatment for my aneurysm, which was the big old craniotomy. You know, where after opening my neck for blood control, they crack open your skull, pry apart your brain and break bones inside your head to get access to the aneurysm, which they clamp off with titanium clips. That one is obvs way riskier. Higher risk of death, stroke, paralysis, brain damage, etc. So I said 'no thanks', and hightailed it back to Dubai to regroup and see what other options I have.

It's funny though, I was only in hospital in Singapore for 11 days, but man that felt like an eternity. I would get so stir crazy, many times a day I'd go stand at the window of my room and look out, pretending I was one of the lucky people wandering around below. Mali and I would wax poetic of the wonders of our bed at home. I longed for my car and my freedom. I missed my cats. I wanted food that wasn't bland and boiled. I craved activity so much I'd get dressed in the mornings and tidy up my hospital room in the afternoon. 

And now that I'm home, it's only been four days, but already my hospital stay seems like a distant memory. So much so that I am tempted to forget it all ever happened, including the aneurysm diagnosis, and just go back to life as usual. This doesn't feel so bad, this having a brain aneurysm thing. Sure, I get headaches and dizzy spells, and I'm acutely aware of the 'ticking time bomb' aspect of the bubble of blood in my brain, but, at least I'm free! The idea of doing it all over again - finding a new doctor in a new hospital in a new country who has a new promise of straightforward treatment for my aneurysm, arranging new tickets and new leaves from our employers is rather daunting. Death doesn't scare me. Logistics scare me. And boredom. Sigh.

But I am working on it. I've tracked down a dozen or so doctors around the world who've done some new treatments that are less invasive. Two of them are hopeful that I'd be a suitable candidate. Now I'm just trying to wrangle some insurance coverage for it all. Inshallah that'll come through soon and Mali and I will be off on a second medical adventure, hopefully one where we get good food, free wifi, comfortable beds, and lots of fun visitors to keep our boredom at bay. Oh, and a permanent solution to my aneurysm. Inshallahkhair.

Monday, January 13, 2014

The Rupture vs The Rapture vs The Raptor?

This blog wasn't started to be my medical drama diary and I promise, it won't be. But for now, I guess, that is what occupies most of my mind (well, at least, a 9-10mm bubble of it), hence what finds its way to this sad corner of the internet. Bear with me. :)

So my asymptomatic aneurysm is no longer asymptomatic. I now have splitting, nauseating, and mind clouding headaches every day, out of the blue. They come in waves, leaving me dazed, irritable and unable speak very well. Thankfully, a few Panadol gets rid of them eventually. But man do they up the stress ante.

The thing about having an unruptured aneurysm is that it could rupture at any time. I've been told to avoid things like heavy lifting, strenuous activities, and blows to the head. But really, anything could do it. The weakened blood vessel that has bubbled out in my brain is now probably 4 times bigger than it should be, and was never meant to be stretched so thin. Just plain old wear and tear could be enough.

That's why every time my brain starts to twinge, I feel like old Sanford and The Big One (clip below, in case you didn't grow up watching rerun sitcoms from the 1970s).
Then I end up sitting there, very still, waiting for the "worst headache of your life" hallmarks the doctors warned me about in case of rupture, running through the list of what I have to do if it is (1. Call 999. 2. Call husband. 3. Stop driving if driving.). When I find myself still there, alive and just irritated by the tight pain in my head, I then sit there wondering: "What set off the headache? Does this mean the aneurysm is getting bigger? Does that mean I'm going to have to have open-brain surgery?" Fun times.

Was just on the phone with my sister Abez, who'd called to talk me out of my funk and fatigue, and at one point my mumbled complaint about 'waiting for the rupture' sounded like 'waiting for The Rapture.' (Yeah, sorry, having an uber Christian mother gives you all kinds of weird mental triggers) Now THAT is something to be scared of - you know, the biblically foretold end of days where the righteous are called up to heaven and the rest are left behind with James Franco and Jonah Hill. I saw the movie. I do NOT want to be there. I can't STAND James Franco.

You know what else sounds like rupture and rapture? Raptor. COINCIDENCE? I THINK NOT.




Wednesday, January 8, 2014

Zombies aren't real, so it doesn't count

One question I keep getting is:
“Are you scared?”

I wouldn’t say I’m scared. But that may just be because, word nerd that I am, I feel that ‘scared’ is not quite the right word. ‘Apprehensive’ is a better fit.

I am definitely not looking forward to the brain surgery that I’ll be having to fix my aneurysm – surgery is pretty much a miserable experience every time, and I’m not ignorant of the risk of ruptures, tears, strokes etc. during the procedure itself. Nor am I looking forward to another diagnostic cerebral angiogram ahead of the surgery – the last one was so painful it pulled me out of anesthesia. And most of all, perhaps surprisingly, I am not looking forward to being in a hospital for 3 weeks. I can’t lie down for longer than 10 hours without being in a world of ache and boredom drives me insane.  

But am I scared? No, not really. Since I was teenager, my standard line has been “I’m not scared of anything but Allah.” And that’s the truth – flying cockroaches and recurrent zombie nightmares nothwithstanding. Yes, a zombie could hurt my body, and cockroach could give me awful heebeejeebees, but nothing and no one can hurt me where it matters – which is in my soul – unless I let them. The failures and pains of this life have no bearing on the real life – the afterlife – unless you let them by allowing them to tarnish your faith and practice. In fact, illness and unpleasant surgery could actually get me closer to some good in my next life, by washing sins away and bringing me closer to God.

So I am not scared, because even if the worst case scenarios happen – the surgery goes wrong and I’m disabled or the surgery fails and I die – then if anything, I will hopefully be in a better place, afterlife wise, than before. Inshallah then it is all a win-win. I’ve just got to live up to my claim to be a Muslim and actually happily submit myself, my fears, my health, my hopes and my will – to Allah. Whatever He has planned, it will be for my betterment, Inshallah.

Tuesday, January 7, 2014

Tis but a scratch! I've had worse! Have at you! I'M INVINCIBLE!

I got to work from home for the first time today, which was awesome. Previously, my office had a policy that either you were IN the office - and 'working' - or you were absent, regardless of whether you worked while out of the office or not. When I returned from the US, I brought a note from my neurologist there requesting that I be given flexible hours to work around my symptoms, and also reduce the strain on my health from driving to my distant office. At the time, my company didn't have a policy previously to allow it, so I had to wait a month. But now they've given me the go ahead, so here I am, in jeans and a hoodie, working out of the recliner in my living room.

I guess this is me taking things a bit more seriously. I'll probably get beaten for admitting this, but two days after I was told I had a brain aneurysm, I participated in a crazy massive scavenger hunt. At time time, I didn't realize I was signing on for something that involved two hours of running up and down escalators, sprinting through malls, and fighting to get the last spot on the metro, but that's what it entailed. When we finished the race, I remember turning to my husband and panting "I probably should NOT have done that." And we laughed and forgot about it.

In my defense, the doctors have been a bit confusing with their recommendations/limitations. The doc who diagnosed the aneurysm said I was basically a ticking time bomb that could go off at any minute, which would kill me if I didn't get to the hospital right away. Yeah, that was a bit of a downer. Then the next other doc I saw said I should be fine to wait a month or two to arrange my treatment abroad and not to worry too much about the risk of rupture. Then the doc in the US said I could be active, as long as I didn't do any heavy lifting or take any blows to the head.

So, me, being me, I kind of tried living life as I would normally. I've not taken time off work - except on days when my head was really hurting. I still do my usual chores and cooking. I'd kept going to the gym and playing squash, pain levels permitting. But after last week, when a brief jog a the gym resulting in an intense eye twitch, to the beat of my pulse no less, I realized that maybe I was being an idiot. If my aneurysm has even just got bigger, that will be a bad enough thing and could mean I have a far more serious surgery. Plus, I've had lots of poking and reminding from my medical student niece that I should be more careful. So I decided to stop playing fast and loose and be a bit more cautious with my health.

It's weird. When I was a kid, I was such an attention-starved little urchin that I used to wish I had some terrible illness that would get me special treatment and all the love and care of everyone around me. But now that I have that, I want nothing more than to just live as I did before and be left alone. There's something deeply uncomfortable about that strained, compassionate verging on pitying look that coworkers and acquaintances give you when you're unwell. And I'd rather family and friends didn't worry about me - it doesn't accomplish anything and just makes me feel guilty for upsetting them. And then, I guess, part of me hasn't really come to terms with all of this either. I don't like having limitations. I was one of those 'anything you can do I can do better' kids, and have always pushed myself to do as much as I can. Now, I find myself aching for days if I just make a batch of cookies and can't walk in the mall for more than half an hour before my hip, back, feet and head hurt. Hence why I guess I'd been in denial about my health and its risks.

But hey, I've stopped pushing myself in the gym, playing squash and am even reducing my driving hours by working from home. So maybe I'm finally evolving beyond being the Black Knight. Though he still is pretty cool.