Search This Blog

Tuesday, June 28, 2011

In Gratitude

First and foremost, I am thankful to Allah (God) for this life and everything and everyone in it. This has been a very big trial, to say the least. I can only take that as a position of honor in that He will not put a burden on any soul greater than it has the strength to bear. Even I didn't know my soul had that much strength. And, how does the saying go? Whatever doesn't kill you makes you stronger. Well, while I wait for my strength levels to build, I have been well supported by a community of family and friends who are experiencing their own related trials in this situation.

I'm currently in Northern Virginia this week for a little R&R, a vacation of sorts. Actually, it's more like a staycation that's all the rage in today's economy, except I'm staying with good friends instead of at home. This allows my girls (who were sent away from home on June 13) to return home and re-establish their routines before summer school/camp starts in July. We're also hoping it gives Mom and David get a chance to re-group. Their lives have been turned upside down and inside out caring for me.  But, they're not the only ones...

I don't want to list names without permission, nor would I seek to dilute the blessing of anonymous generosity. So instead of naming individual people, and there are many, I want to show my appreciation for the many acts of love, kindness and service that have been flowing my way. I am immensely grateful to each and every person out there (you know who you are) for every...

  • moment spent in prayer on my behalf
  • meal, snack, or drink brought to me in my sick bed
  • medicine reminder
  • night (+ days or even weeks) spent having my girls sleep over
  • mile traveled to visit or help our family (and associated gas $)
  • dollar given to ease the burden of mounting medical and dependent care costs
  • pot of yummy, nutritious food cooked with that extra healing ingredient, love
  • household chore done for us
  • bouquet of flowers, card, box of chocolates or gift intended to brighten my day
  • piece of advice on how to heal, recover, relax
  • hand or companionship given to facilitate one of my daily walks 
  • positive thought on my behalf
  • intention or act of which I may have no knowledge but from which I enjoy benefit
May Allah (God) reward you in goodness. Jazakum Allahu Khairun.

Sunday, June 26, 2011

Walking on wet sand

This process brings to mind an analogy of a swimmer at a beach who has been swimming way too long.

That swimmer loves to swim, to race. She sometimes even wins a race, but not often. She usually finishes well, but it always seems like the other swimmers around are better for the race while she's done in at the end. Paying very careful attention to her lifestyle, she wonders why its so difficult to establish a comfortable routine. She tires slowly and recovers more slowly, exhaustion lingering as the others party on the beach in the evenings.

One day, she wants to race badly, but her energy level has reached new depths as her pain soars. Usually, she'd just muddle through the painful fatigue, but it's unrelenting this time. Everything she loves has become an annoyance at best. Even opening her eyes in the morning seems a chore and promises glaring light, jarring noises and an ocean that threatens to drown her if she just dips in a toe. This day, she cries out for help.

A lifeguard runs to her saying, "Hey! What are you doing? You can't swim like this."

She says, "Its been harder and harder to compete lately, but I really don't know why."

"Well, we usually don't dictate what kind of swim suit people can wear here at the beach. But, I just gotta tell you, that chain mail will get you nowhere. You might even drown swimming in that stuff."

"Oh, this? Well, I can't seem to get it off. I figured it was okay as long as I could still get my head above water. But, lately, every time I get out of the water, it takes everything just to walk on the wet sand back to my towel. I just can't do it anymore."

He helps her across the wet sand, "Come on. Let's get you someplace where you can get out of this monstrosity and find something appropriate." 

So, its not a perfect analogy. Chain mail would definitely be a choice, and a stupid one at that. As a matter of fact, I just took on, not off, a bit of metal mesh. Also, I am well aware - this is for all you psychoanalysts out there - that life is not a competition. It's not whether you win or lose, it's how you play the game. Play the hand your dealt. I could go on, but why?

My Chiari malformation was conferred at birth, and I had to go through brain surgery to attempt getting rid of it. Did the surgery even work? I'm still walking through the wet sand rather slowly. I can't even swim again yet. The best we can say at the end of week two is: So far, so good. 

Friday, June 24, 2011

Don't Baste on Me!

10 days after decompression surgery and my stitches are out. Yay!

Dr. Jon Weingart is someone for whom I will always have a fond appreciation, the neurosurgeon who's gifted hands and team set out to return what has eluded me for an untold number of years: normalcy. They got into my head performing several surgical procedures including
  1. a craniectomy - removed a flap of bone from my skull
  2. a laminectomy, removed part of my first vertebrae, and 
  3. a duraplasty - slit, patched and subsequently expanded my dura (brain covering); and
  4. installation of titanium mesh - so my neck muscle would have something to which to fuse.
Finally, they zipped up my head by sewing a very nice blanket stitch with stinging, itchy knots one each end. You know, after the surgery, I was a little confused. I don't remember most of the next day, but rumor has it I told that doctor, "Nobody bastes on me like that! It's gonna be me and you in your office, 10 days from now," or something like that.

So, I got up Thursday morning and went down to the Johns Hopkins Outpatient clinic to take care of my (previously scheduled) business. Dr. Weingart looked at the zipper, declared it ordinary and started snipping (painlessly) with tiny scissors. He then used tweezers to pull all the little threads out (felt like he was repeatedly poking me with a sewing needle). You know what they say: You've gotta rip what you sew. No more sutures in my future, inshaAllah. 

I now have permission to get my scar wet, take a dip in the pool (but not an actual swim), drive and just chill. I can take all my supplements and over the counter meds that were banned before surgery. Work and exercise are still banned for at least a month.  After that, I'll follow-up with the doc again and see if we can extend that work ban for a few more years, hmmmm.
  • Note that this series of fortunate events may just settle a 14 year marital argument - I am such The Brain! Unfortunately, for some, the question still lingers: Who's the genius and who's insane? Well, I do have newly enhanced telepathic mind control powers useful in taking over the world, now with a built-in titanium mesh amplifier, mwu ha ha ha haaaa... I'm just sayin!
Also, I must add that the new drug coctail, which now includes that wonderful analgesic ibuprofen, has my pain levels at a consistent 2-3. For most of my first week home, they had a  range of 4-8 (on a 10 point scale where 10 is the worst pain imaginable and 0 is no pain at all). Woo hoo! Now, I really have to learn some self control. Going forward, I'll have to keep it calm because I know I should, without (hopefully) the threat of head-splitting excruciating pain as an immediate consequence. Here goes.

Until today, wearing a scarf on my head felt like wearing a toddler as a hat! I could tolerate it as long as it took to make salat. Speaking of salat, I was previously doing the qiyam (standing) position only. Even a slight bend was painful, and  the half-way Tasleem I made probably looked more like "slaw layka ratala" But, I'm doing my physical therapy - nodding, head turning, head rocking and shrugging - and my range of motion is increasing. Combine that with the new pain management routine and I'm cookin wit gas. Now, I can do a proper qiyam, ruku (bend), and jalsa (sit). Tasleem (head turning) looks like at least "Slawma Laykum wa Rockmawn to Allah!" Sajda (prostration) is still somewhere down the road. 

Tuesday, June 21, 2011

Rain = Pain

For the third time since Thursday, I had a real throbbing headache that just wouldn't quit this morning. I'm just realizing that, each time, it was rainy. I hope I'm not gonna be one of those people who's ache tells them rain is coming, and in the head no less! Ya Allah, please spare me that one.

I also want to give a general update on my progress so far.

Now, the doc said not to lie down unless I'm actually going to sleep. Otherwise, keep it moving, but nothing strenuous: sit in a recliner, TV, read, write, eat, computer, walk. That's easier said than done. I actually get tired of holding my head up after a while. At those times, I recline my head on a pillow in the living room with an ice pack (sweet cooling relief).

I wish I could say my pain is diminishing, but I still need those pain killers. When I sleep through a dose, I can barely lift my head off the pillow. I don't know if it's all in my head (figuratively) but the pain starts to increase when it's almost time for a pain killer. Am I just becoming a drug seeker? A couple of times, I put the medicine in my little serving cup and forgot for 15-20 minutes without disaster. You go figure.

I can say that my movement is improving. My neck's range of motion is definitely increasing, alhamdulillah. I do the Physical Therapy exercises they taught me in the hospital and take several walks a day, each one a little longer. It seems like the walking helps reduce the pain slightly.

My scarf is out of the question! When I went to the hospital, I wore a loose, thin scarf. That thing felt like a person was laying on my head! I kept it on while I was there for fear of airborn germs only. As soon as I got in the car, that thing was shed. Shoot! Most of the time, my hair is all piled up at the front to avoid that weight, let alone a scarf. I'll just wear an imaginary one if it comes up.

Most of the time, I'm taking way too long to do simple tasks like eating, writing or reading. I'm so fuzzy, probably thanks to those little teeny, blessed pain pills. I tried to paint my nails the other day, and it was so tedious and difficult. I wouldn't mind talking if it didn't make my face hurt and head throb half the time. Still, I look forward to the healthy, adult visitor if only just to listen to them.

Some have brought food, gift baskets, flowers and snacks along too. Thanks and smooches to each and every one of you angels. I must admit, I mostly get enthusiastic about eating fruit and salad. Nausea is still an issue from time to time, and I have little appetite. Still, I try to eat at regular times. It makes me feel much better when I do.

Saturday, June 18, 2011

Scared of the known and unknown

Yesterday, I saw Raabiah and Janan for the first time since Monday's surgery. When they came through the door after Jeyda's graduation, all I could see was speed and grime. They were just excited to see me, and moving a bit less cautiously that would have made me comfortable. They were actually pretty clean (for them), but new-found germophobia led me to see stickiness and dirt where there was probably just brown skin and a little ash. Someone had prepared them, though, and they dutifully went straight upstairs, changed their clothes and washed their hands. Bless their hearts! The hugs turned out to be gentle and safe.

Last night, I went to the one place I'd hoped to avoid in all of this... the Johns Hopkins Emergency Department. OMG! They are SO not set up to help the walk-in citizens of Baltimore City! To the contrary, it seems like there just might be a concerted effort to be as ineffectual with emergencies as the hospital is known to be great for the rich and rare problem coming from all ends of the earth.

So, all day long, I'd been feeling like my head was swelling. The ringing in my ears (a regular sound pre-surgery) came back briefly, I felt a bit wobbly when I stood, and my head was feeling numb and throbbing simultaneously. Tannaz had come over in the morning and encouraged me to call the doctor. When they finally got back to me, they said they would have to take a look in order to tell me whether or not things were okay. They said if I went to Emergency, they would call for the neuro doc. Somehow, that memo was delayed by several hours, however. Nevertheless, four hours, a crackhead meltdown, several germy coughs, a face mask and a pint of hand sanitizer later, I was sent home with that ever so blessed and welcome label: normal.

Friday, June 17, 2011

Home at last

I came home yesterday. Things are definitely different here...
I must admit, I've got a new headache. Neurosurgery is nothing to sneeze at, or cough for that matter. I have feared a cold before with my chiari headache. These days, I live in mortal dread of a cough. I've figured out a formula, though: line a pillow with a wide ice pack, wrap that around my neck and hold tight, next I cough ever so gently, once, maybe twice, that's it. After that, I try to recover and pray my throat stays clear from then on. My consolation: today's cough is easier than yesterday's.

Whenever I suffer through some new and/or different surgery related pain, I just remember that, since Monday, the pain is diminishing, not increasing. That is the opposite of my life leading up to June 13, 2011. Yes, I do wonder when the new headache will be gone. Also, I am thankful for the steady, hopeful improvements brought by each day so far.

Wednesday, June 15, 2011

My very own zipper!

2 days out of surgery! Here's the best front/back I could manage without completely dejabbing. I just want you guys to know that my new "zipper head" represents improvement...

I feel like I am sitting stationary, no longer free falling backwards, bed and all.
I walk down the hall, and the hospital stays put, it doesn't spin.
My headache is improving over time, but I know its shape and size, it's not radiating down my back.
No random fluttering in my ears.
No random vision spots.
No random back shudders.
Nausea is subsiding, slowly.
Notice, no superstar glasses. I don't seem to need them for light sensitivity, just stardom!

We're still working out the kinks, so stay tuned.

Tuesday, June 14, 2011

Against Sick / Sic in the Penthouse

Akilah looked good this morning.  I mean, a million times better than yesterday.  I can prove it, too, having documented everything with photos all along the way.  But the fam vetoed [embargoed?] the idea of a photo essay on this particular occasion.  So you'll just have to believe me that she looks a ton better.

She feels better too.  Downstairs on the 7th floor, the new nurse, Beth let us in early this morning -- even though visiting hours did not begin until noon.  [I hope Beth does not get fired.]  Akilah was up and ready to eat breakfast -- back to solid foods after a day of IV and low-level pain killers.  We brought her something a bit better than the standard-issue hospital rations, and she was able to take /real/ pain medication.  She was out of the woods.  Whereas yesterday the pain was sometimes at 11 on a scale of 1-10, today it was at 5 - the trigger to let her move out of critical care and to the recovery room, where she would stay for the next few days.

She was just moved up to the 9th floor, the highest level in the Meyer building (outside of Osler where the operation happened, and above 7th Floor Meyer where the NCCU is located).  Kate is the new nurse up in the penthouse suite.  Akilah's companion has the same doc!  

Finally, finally, Akilah was able to see and recognize her totem -- which by the way, I've found is an entirely legitimate way to describe the lillies.  See, e.g.,   [So -- no sic.] She's back!  In sha'Allah home soon.  And in sha' Allah, fully recovered and better than ever soon after!  [So -- no sick.]

Tremendous, tremendous thanks for all the prayers and well wishes and support otherwise.  We are extremely blessed to have you, and Akilah and all of us appreciate you enormously! May God in turn reward you generously and Be with you and us all.

It may be that these events are stark reminders for us all -- to turn to God and to enjoy Life.  It is as a friend's dad reminded us recently with simple words that his recently deceased wife brought to mind after a lengthy illness:  "I wish you good health.  And that you enjoy life, every moment of it."


Ending Limbo

How *does* one know they're in limbo? A friend pointed out (though, not gutsy enough to do it online!) that my so-called totem was all wrong. The person has to bring an object with them that /they/ can recognize, and observe in various possible states whether it follows the ordinary laws of the right world, the right state. That friend probably also had an urge to correct my posts for inevitable grammar and spelling mistakes. My apologies to all offended by hints of fictional infidelity. But might I invite you to still run with me on the metaphor for a bit longer?

To some extent, Akilah left the greatest danger-zone last night, when she showed herself to be lucid enough to intermittently speak, albeit while managing considerable pain. Dr. Blanco and his staff came periodically, asking her to speak, move her eyes up and down, shift them side to side, stick out her tongue, shrug her shoulders, wiggle her toes, shift positions. She spoke coherently about how she was feeling, and finally, they said she was aware enough to receive a device to manage her pain herself. Dr. Weingart came by and satisfied himself that all was (still) ok. He reassured us that all was according to schedule. All was excitingly ordinary.

Yet, she was in a lot of pain, working on managing it. If and when the levels get down below 5 on a 10-pt scale, she'll leave the ICU for regular recovery where she would then stay for another few days. The doctors will make the rounds again this morning to make a determination on that score.

When she moves to regular recovery, that's when she'll get to see her 'totem' [sic].

- IR

Monday, June 13, 2011

Spinning / Invisible Totem

Akilah was unable to see her "totem." Well, it was really because we weren't allowed to bring the callalillies into the ICU for risk of bacteria. But even if we had brought them in, she might not have seen them continuously. She was slipping in and out of consciousness -- deeply snoring one minute, then awakening the next, swearing up-and-down that she'd been awake the whole time without interruption.

The doctors said that she is not out of the woods yet. Dr. Weingart and Dr. Blanco have been in touch, trying to help manage her pain, and explaining to us -- along with nurse Hazel -- that they cannot give too much sedation or pain medication, despite the serious surgery. They have to make sure over the next two hours that she actually feels everything, that the surgery has not affected other areas of her body, and that her sleep is not due to some post-op malfunction.

So they are keeping her in a near-dream state, with as minimal medication as possible while still trying to make it manageable for her. It is hard, because she said initially that she was in extreme pain -- an 11 on a scale of 1-10 at one point, but then it was quickly brought down to "8" or "9." Still pretty daunting. With the next dosage, it is supposed to go down even more. Dr. Blanco tells us that this particular medicine takes about a half hour to take full effect. I hope they strike the right balance. I hope she will soon wake up in the next post-op room, outside of the ICU (or here NCCU - Neruosurgery Critical Care Unit), and see her totem without pain. We read some Qur'an and it was nice to see her deep frown slacken if just a bit.

Mom and David are here and feeling much relief that Step 1 is over. Sabrina has been helping keep vigil today, too, and just left. We'll all be even more relieved when we pass this next Step. Next update just as soon as the totem a) stops spinning and/or b) becomes visible (well, when we're allowed to bring them in)!


The Excitement of the Ordinary

Run-of-the-mill, ordinary, unsurprising. These are usually terms that elicit chagrin. We want excitement that puts us as far away from mediocrity and boredom as possible, believing the extraordinary to provide some formula for just that.

But Dr. Weingart told us that everything went according to plan, that all was as expected, that there were no surprises. We have never been more excited by the ordinary. And grateful to God for answered prayers. Akilah is out of surgery successfully (though not out of the woods quite yet).

She is now coming out of the deep, deep sleep induced by the anesthesia. Bryan had told us that she would remember our conversation with him and her from before the surgery and then remember waking up, possibly as if no time or just 5 minutes had passed. Like the blink of an eye. Like this whole life.

How is she to know which life she's in, whether she's awake, if the passage of time is at the "ordinary" rate? We've gotten her a totem (showed her before she went in). The hospital staff will think they are ordinary flowers, the type that family and visitors might bring. But they are the way Akilah will know she is back.

We will see her soon, in sha' Allah.


Super Akilah

Surgery just started.  We woke before dawn and drove through the empty streets and beneath streaking, strikingly calm and mesmerizing soft blue skies to Johns Hopkins.  David, Akilah and I picked up mom along the way and arrived to the hospital at 5.30am.  Dad was there when we arrived.

Akilah went in for pre-op preparations -- getting suited up, IV'ed up, and the like.  After some time, we spoke to the anesthesiologist Dr. Lee and his assistant Bryan, the nurse Sherry and a few others at some length, and most importantly, to Dr. Weingart.  He put us all at ease -- not by anything he said per se, but by his demeanor and expertise. And his empathy.  Though his team was delayed (it was not until about 8.00am that we spoke to him), he was patient and answered our last questions.  He has performed this operation hundreds of times, as the number one physician specializing in this, and through trial and error discovered that some of the complications of which "Chiarans" [sounds like cousins to the Romulans or the Vulcans] have complained have been from an old method.  He has since discovered a way to insert titanium mesh into the affected area in the dura, which strengthens the place of the operation and avoids the complications.  

I think he is creating a superhero.

Akilah insisted on seeing X-Men yesterday [well worth seeing!].  It seems that her "mutation," manifested as Chiari "malformation," is one that has given her extraordinary powers to be super-smart, super-kind, super-sister/daughter/mother/friend.  Super Akilah!

The surgery is scheduled to take three to four hours, and it will be another hour or two after that before she comes to. More updates later ... 


Today's the day...

How do I feel? Physically, I'd rather not complain. Suffice it to say that my lifestyle has been limited in many ways. Emotionally, afraid and determined. Plus, you know that I am so often mired in some random, seemingly far-fetched situation. I just hope this is the RANDOM, CRAZY story to end all stories. I mean, really?!? I thought I had a fairly large head with a pretty decent shape. Apparently, Chiari Type I is a problem for people with an unusually small or mishapen head. Or, maybe my brain really is too big for my own good. I wonder: if my parents had named me a less cerebral name than Akilah (which means intelligent), would I still have this problem?

This morning, I'm reciting a very real quote from one of my favorite works of fiction:
"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain." -Bene Gesserit Litany Against Fear, Dune by Frank Herbert

Friday, June 10, 2011

...but for the Grace of God...

Alhamdulillah (all the Praise is for God) for the circumstances of my life. Facing major surgery and/or chronic pain, possibilities, signs and blessings are foremost in my purview. It's almost as if my perception has gone HD.

Ambiguity has gone the way if the old analog TV box: nearly obsolete, in need of modifications to function. It's still hanging around but no longer being sold. Now, when I shop for truth and understanding, the choices are crystal clear.

Tonight, my daughter Yasmine helped put on a Breast Cancer benefit at school. As I listened to a survivor, I felt thankful for my circumstances. I was quickly connected with the best doctor and am supported by an amazing group of family and friends. My diagnosis is clear and prognosis is good. So, as I listened, I couldn't help but think, "There, but for the Grace of God, go I." Unearned, unplanned, but always on time: we can only be thankful for His Grace.

Monday, June 6, 2011

On motherhood...

Let me start by wishing my own mother a Happy Birthday. On this occasion, I am drawn to consider my own role as a mother and how that is ever changing. It almost feels as if, in going through this surgery, I'll be taking a break from mothering, a break I've never anticipated. Expectations are different from one person to the next, one age to another.

In light of that, I am forced to evaluate my own definition of motherhood. What do I expect of myself. What does my child expect of me. I speak of child in the singular because I feel I am four different mothers to four very different, very wonderful little girls each of whom has a unique bond with me. Ultimately, I am looking to isolate in my own estimation the essence of that bond, expectations and performance aside.

My only true point of reference in this esoteric exercise is my bond with my own mother. This is not an evaluation of our relationship. That has its own ups and downs, ins and outs, hits, misses, joy, pain, etc., being nothing more than the dramatization of the mother-child bond in its core. I just want to highlight the existence of that bond and thank the one person with whom I've had the longest unbroken connection of my life. I pray that my girls will feel the same continuity through the coming days.

Sunday, June 5, 2011

How did I find out about this?

How did I suddenly end up needing surgery on my head?!

Well it all started with a headache that wouldn't quit in March. This headache started at the base of my skull and wrapped around like a scarf. Nothing I took or did would get rid of it or even help. The first day was the worst kind of headache. You know: the kind you just sleep off. I was convinced I was coming down with the flu.

The second day, the headache was worse and accompanied by nausea. I wasn't alarmed yet, though, because day one was spent nursing a sick child with a stomach virus. She'd had a headache and vomiting. I just figured it was my turn. At the end of this day, I felt even worse. The headache was so bad, I couldn't tolerate light, sound or movement. I also couldn't sleep. Finally, I tried to induce vomiting to get that virus out once and for all. That just made everything worse. Eventually, I slept about 2 hours.

Day three: I stayed in the bed while David got the girls off to school. As I lay there listening to the regular morning routine, tears streamed down my face without the sound that would have surely split my head in two. I wanted to tell him how bad it was, but I  wanted more the silence promised by his and the chatty childrens' departure. By about 9:30 am, I called David at work to ask him to take me to urgent care.

Once the urgent care doctor determined that I did not have a history of migraines (which he'd called my headache), he ordered a CT scan. The results concerned him. He sent me back to my primary care doctor and said I should have her order an MRI. Meanwhile, not feeling comfortable with the M.D. volley, I called a friend who works at Johns Hopkins Neurology. She told me that it sounded like a Chiari Malformation, but that the MRI would confirm the diagnosis. She also made sure I got a same week Appointment with a Neurologist.

It was raining the morning I was scheduled to get my MRI Flow Study. On the way to drop the kids off at school, I crashed my car. Then, with additional neck and back pain, I went about my appointed rounds which now included insurance phone calls, renting a car and getting an MRI.

The next day, I took my MRI results to the Neurologist. He made the diagnosis of a Chiari Malformation, with a 15mm herniation, then referred me to a Neurosurgeon. I met with Dr. Jon Weingart about two weeks later. He explained that, while my condition was not life threatening, my symptoms were likely to worsen over time. He said I would have to decide what quality of life I wanted and plan surgery for a time that fit my schedule.

Well, to me, that meant I should go investigate every alternative I could to avoid or postpone the surgery. I had some pain management success that was all too temporary. I did a few things that I now know will exacerbate my symptoms. Meanwhile, my symptoms consistently worsened by the week. Eventually, my pain overtook my fear, and I scheduled the surgery for June 13, 2011.