[The 2005 posts collectively won the 2005 Brass Crescent Award for Best Series]
I became ill with Devic’s disease (neuromyelitis optica) in 2003, five months after my marriage.
Having Devic’s (initially classified as a sub category of Multiple Sclerosis, but now generally considered a completely separate, rarer, and more severe condition) means that one lives with alternating episodes of spinal inflammation that result in varying degrees of paralysis, & optic neuritis which causes partial or total blindness.
Recovery from these episodes can take months &, sometimes, years, and is often incomplete.
These entries represent my on-going exploration of living with an illness with my faith, & a sense of beauty & gratitude intact, God willing.
October 2005 was a particularly good month for reflection, as I was in the hospital for three weeks.
February 2003
Morphine What happens when you get married, move cross country, start a new job, & suddenly wake up one day unable to walk?
April 2005
My Right Foot All of creation bows in gratitude. How can I be more like that even during paralysis?
June 2005
Afterglow Reflecting on the life force of a child.
Beautiful Day Sometimes you’re given a day that shines like a pearl. This is one of them.
July 2005
True Romance A weekly date with an MS shot to the thigh is alleviated by halal pepperoni pizza, Don Juan, & Seyyed Hossein Nasr.
Knowledge Exploring the difference between knowledge & information.
August 2005
There but for the Grace of God How much of our lives do we really have control over & actively choose?
Tales of a Biotech Guinea Pig The funny side of being in an experimental chemo research study.
September 2005 (Beginning chemotherapy)
Chemo/Therapy The first time.
Benevolent Elixir & Sacred Letters Post-chemo quietude.
Gratitude Shukr, baby!
Relapsing/Remitting Of spinal hiccups & mercy.
Insomnia Dealing with an addiction to sleep medication.
October 2005 (Most written during a long hospitalization)
Crouching Tiger, Hidden Baraka Can’t walk, but still flying.
Plasmapheresis & the Generosity of Souls Getting ready for a medical proceudre with thoughts far away in an earthquake struck homeland.
Connectivity Online & live from the hospital.
Finally, a Room with a View Finding beauty even in the hospital.
A Sudden Burst of Green An encounter with the wild green parrots of TMBCE and how we barely escaped with our lives.
Blood & Sugar George Clooney hand-feeds me dessert.
Cheveux Hairy Purelander women exposé!
Veneer Sometimes you realize just how petty you really are. And that you’re deeply blessed in spite of it.
Home Sweet Home Released from the hospital, but not without a dramatic going-away present.
Behind the Mask Halloween & my jugular vein.
November 2005
The Unbearable Lightness The summer I learned to swoon.
Sheer Delight How it feels to be home.
Sunday Paper A very short poem.
The Well Another.
December 2005
Intersections An exploration of becoming increasingly disabled.
January 2006
The Year in Gratitude Thinking back on a tough year healthwise
February 2006
The Cord of Love Finding a deeper meaning in illness
Pop a Wheelie Remembering the first time I used a wheelchair and the joy it brought my two-year old niece.
Outed Examining my discomfort in joining an online Devic’s support group.
March 2006
Quake How far can I run if disaster strikes? Especially since I can no longer run.
Puberty Going through it for the second time at 33 ain’t easy.
June 2006
Anniversaries Looking back at a year of blogging and of time spent in illness and otherwise.
Postponement Finding the perspective to postpone chemo.
July 2006
Thoughts before Chemotherapy People tell me it’s odd that I consider this illness a blessing. But through it I have become more humble, grateful, content, and attuned to the joyous beauty God has created.
Post-Chemo Thinking back, and ahead.
August 2006
Birthday Chemo A birthday spent in mindful preparation for chemotherapy.
January 2007
The Gratitude Challenge Dealing with negativity as I creep my way back to health
February 2007
Hospital Humor Farting roommates and the gratitude challenge
September 2007
October 2007
I am a human tikka A newfound sympathy with skewered chickens after a botched spinal tap
November 2007
Chemotherapy Limbo Rituxan interruptus
Darkness, My Old Friend Admitting depression and spiritual distances
Resetting the Timer Thoughts on having an exacerbation again after two years
The Second Husband There have been three of us in this marriage since day one
December 2007
An Afternoon with the Hijabed Dealing with post-chemo affects and Basil’s depression
February 2008
Has Class Trumped Race? The interactions of class and disability.
The Case of the Big Black Boot When vanity and disability collide
A Good Life Dealing with my own illness and the medical conditions of others makes me reflect on what it means to live a good life versus a good death
Puppy Love I have so much to learn from the loyalty and love a hurt puppy dog shows his Master
March 2008
Becoming Sahaba Hesitating on the edge of community
A Storm of Blossoms Spring flirts with San Francisco and a tree once again shows me, struggling with a stress fracture, how to be.
May 2008
Allah’s Plan Humans plan and Allah plans, and He is the best of planners. But accepting that isn’t always easy
December 2008
Recovery Struck down with meningitis in a city that sees only a dozen cases a year. With odds like these, I should play the lottery.
February 2009
Chemo Friday Every 14 months the chemo infusion rolls around again, and yet I never feel prepared.
Cultivating Surrender A dear friend of mine who is a caregiver to her husband breaks down and gives me perspective on my own mental state & upcoming chemo treatment.
April 2009
The Holey Brain Memory lapses are a part of NMO, and occasionally cause great amusement.
3 comments
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March 7, 2006 at 9:50 pm
Granny
I don’t think I knew any of this. Your soul shines through.
Perhaps I did and have forgotten. Age does that to one sometimes.
June 29, 2006 at 3:04 pm
lisa schamess
i hope this finds you well. i just saw a link to your blog from my brother-in-law Andrew’s site, semitism.net, and whether he found you through my connection to you or on his own, no matter.
i haven’t visited your blog in a while, and actually never with such focus on your private life. i am so sorry to know you are struggling with this illness, and so grateful that you are turning your suffering to something so alive and helpful to the rest of us. Martin Buber said of the three heirarchies of suffering, that they are crying for ourselves, crying for others, and turning our pain to song. You are doing this for us. Salaam, lisa
February 5, 2007 at 3:43 pm
Pam
Maureen (Land of Little Rain) told me about your blog and knew I would find your words, and you, inspirational. She was right. I have ALS and have difficulties putting my feelings “on illness” into words. You have done it for me.
I wish you well.