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.

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. 

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.