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Veneer 10 June 2008

Posted by Ayesha Mattu in BARAKA, Spirituality.
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My family is unfailingly polite.

My sisters, during labor, continued saying “please” and “thank you” in between contractions, much to the consternation of the staff. And I’m told constantly that I’m a model patient by the nurses. “Stable” is what they like to call me. The easy patient they can assign to the floater nurse because I’ll sleep through the night and will not smack them when they come to take my vitals or blood at 4 am.

Well, all good things must come to an end.

I think I’ve rung the call light more in the last 24 hours than I have since I arrived in the hospital 16 days ago. I’ve been itching to go home since yesterday once they completed my seventh and last plex in the morning. I was ready to have the catheter yanked from my jugular (they assure me it’s like taking off a band-aid) and go home immediately after.

Negative. My excellent and sci-fi loving neurologist explained they would need another Magnetic Resonance Image (MRI) of my spine and brain before I left and that they could not take out the catheter until my fibrinogen (blood clotting factor) had returned to at least 100 for fear of excessive bleeding after removal. The day after the plex it is usually only 75 and I would need to be under observation for a few hours afterwards. So, another one or two days in the hospital before I could be discharged.

Somehow, this was unbearable. After quietly getting through each of the last 16 days in the hospital, I was on the verge of flipping out over another 24-48 hours. I wanted to blame it on the Prednisone steroids which can make people very angry and emotional but since I hadn’t been feeling that way before and my dosage is actually decreasing over time I know it’s not that.

It’s the not-so-nice, grouchy, cranky, ungrateful side of me coming out that I don’t like to acknowledge but can’t always repress.

I like to think of myself as dealing with this illness with faith, grace, and patience. But the truth of the matter is that there are some days when all the dhikr (meditation) in the world can’t keep me from boiling over.

Murphy’s Law being what it is, combined with hospital bureaucracy, it took them 24 hours just to schedule the MRI. The test is around two hours long and you can’t move once it starts so I wanted to have at least a couple of hours warning so I could reduce my fluid intake. Instead, they came to me 5 minutes before I was to go, just as I had eaten dinner, and was working on the steaming mochaccino Basil brought in for me.

*gnashing of teeth*

Once you’re irritable, the world seems to conspire to bug you. The hospital aide who came to wheel me to the MRI asked, “So, where are you from?”

This is my least favorite question in the world. Americans have a passion for asking this question of non-whites as if we don’t belong here, and it always makes me snippy. Even more so in my current foul mood.

“You mean, what’s my heritage?” I asked tightly. “Pakistani.”

“Oh. Maybe you could explain something to me then? It’s been going on for as long as I remember, and I’ve never understood it. What’s happening in the Gaza Strip? I mean there was an earthquake there right?”

*blink*

A teachable moment while I’m in the worst mood possible. I briefly explained the difference between Palestine and Pakistan, and gave some background on Partition and the dispute over Kashmir. By the time we reached the MRI doors, he looked, if anything, even more confused.

The MRI tech wasn’t there yet. Another delay. I grimly decided to meditate. But the chatty tech aide had other plans. She asked my second least favorite question in the world.

“Are you Indian?”

If the fates are conspiring to make me laugh, it isn’t working.

“No.” I say shortly. “Pakistani.”

“Oh, I’m sorry, is that offensive?”

(YES. *deep breath*)

“No, but you could ask if someone is South Asian instead. Cover more countries that way and probably won’t offend anyone.”

She’s very young, giddy, and uses “like” for every third word.  Just when I think I can’t take the non-stop chatter anymore, they take me to the Machine.

Now, I don’t know if you’ve ever had an MRI, but it’s a very unsettling experience. I’ve had three in the past six weeks alone and many since my Devic’s diagnosis three years ago, but my heart always starts pounding when I face the Machine.

It’s like a huge coffin, big enough to swallow you with small openings at both ends. They slide you in head first and the space gets tighter and warmer around you until your elbows are touching the curved walls and the roof is a few inches from your nose. I’m nearly 5’6″ and thin and it makes me claustrophobic, so I can’t imagine what broader, taller people experience.

They provide earplugs to help drown out the noise. It’s a cacophony of jackhammers, clicks, hammers, train horns and bangs jarring you almost endlessly for the duration of the long test. The small light lessens the feeling of entrapment a little, but it still makes me think of the grave.

I think that’s what gets my heart racing each time and why it takes a good while for me to control the panic. You’re strapped in unable to move and bombarded by noise that easily translates to that of hell. When a brief silence descends and the cool air blows I’m reminded of the ease and light that is possible there too, insha-Allah.

MRIs always break my heart. They remind me of the day when I’ll be lowered into my grave, spiritually alive, physically dead, able to hear but not to respond or call out as I hear all my loved ones walk away.

They also remind me that should my illness worsen I could be locked into a paralyzed and blind body in this life long before I die.

Without fail, the lesson is always waiting for me when they slide me out. Last time, there was a small, three year old child drugged into unconscious immobility with a tube ventilator stuck down his throat waiting his turn. The sight of his limp body sickened me and my heart ached for his parents.

Today, there was a woman who moaned in anguish at the lightest touch, wires and tubes thrust into her whole body. The doctors held a pen and keys in front of her and asked her what they were. She couldn’t say, just looked at them confused, unspeaking.

We were lying right next to each other, on separate gurneys; her suffering a handspan away twisted my gut with fear and horror. And that’s when I lost it. Tears started streaming out of my eyes as I realized how lucky I was to be going home, even if a little later than expected. I thought about all my petty complaints during the day and cringed. I thought of how blessed I was to be able move on my own, to be free of pain, to be able to recognize and name the world around me. I thought of how much worse it could be and of how very ungrateful I am.

And I thought of what I heard today. Of strangers with candy in Pakistani earthquake refugee camps: doctors who have no anesthetic but only sweets to give to children before they amputate their injured limbs.

Ahamdolillah. Alhamdolillah. Alhamdolillah. Sometimes it rips you right in the heart and you finally mean it when you say it. Sometimes the veil is lifted and you realize just how very petty you really are.

Ya Rabb, my Lord, forgive me. Even now I don’t see the infinite blessings You’ve bestowed on me.

Originally posted in Rickshaw Diaries, October 2005.

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Comments»

1. maximus mercury - 10 June 2008

Subhanallah! Subhanallah.

2. Achelois - 10 June 2008

I am weeping. Alhamdulliah that I have you in my life to teach me sabr, shukr, humility, love, and understanding.

I am praying for you. Please get better soon.

I love you!

3. Umm Salihah - 11 June 2008

Salaam barakah,
you’ve made me cry.
It’s good to have sabr, but it’s okay to feel the things that are not so good isn’t it and allow them some expression. We always treat ourselves more poorly than those we love. If it was someone else you loved, wouldn’t you want to hear their compliant and to share their pain?
Allah (SWT) bless with you health and ease.

4. Baraka - 11 June 2008

Salaams all:

Just a note that this is a re-post from my last major exacerbation in October 2005. Alhamdolillah I’m well and appreciate your duas and love :)

And, Umm Salihah, it’s absolutely true that we should allow ourselves expression even when feeling down…but I find it very difficult to give myself that space without feeling immensely ungrateful. No matter how hard it is for me, I know there is someone it is much worse for and it seems petty and wrong to complain.

I am working on balance though – jazak Allah khair for the reminder dear!

Warmly,
Baraka

5. Priscilla Gilman - 12 June 2008

Beautiful, Baraka. Thanks for re-posting these older pieces; they certainly deserve it. I had my first MRI a few weeks ago and it made me think of you as I guessed you had been through that a lot.

peace,
Priscilla

6. Baraka - 12 June 2008

Salaams and thank you, dear Priscilla. I do hope that your first experience with the MRI was smooth.

In February, I went to a new lab and their machine is larger and more powerful and gives the most amazing warming, vibratory “backrub.” I had a hard time not falling asleep!

I’ll be booking all my future appointments there :)

Peace and health to you,
Baraka

7. ~W~ - 13 June 2008

Ahamdolillah. Alhamdolillah. Alhamdolillah. With every hardship comes ease. I learn a lot from you dear Baraka, and I am happy that you are in better health now. Indeed, No one is promised tomorrow, so let us seize the day.

8. Baraka - 16 June 2008

Salaams dear ~W~ alhamdolillah, and thank you. I learn so much from your beautiful attitude towards life too and pray for your health and happiness.

Warmly,
Baraka

9. shannon - 18 June 2008

salaams aisha, not often i post, but it is often i read. first, glad to hear this is a repost, i was getting frantic for your number. the grave part is so profound. i was just thinking the other day about how babies go through the birth canal and how similar that is to our temporary resting place the grave, the constriction, the darkness, the ‘major event’ on the other side. what an awesome insight you had during your mri’s. jazakallah for sharing this.

insha’allah in real time time you’re well;)


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