It's Mara
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The Story
Hi Folks! Here's the story straight from the horse's mouth:
August 29 I stumbled over a word. It wasn't a big deal but I noticed. Then on Thursday night (August 30) David and I left on a fabulous long weekend in Syria. Friday we left Damascus for Palmyra. It was really hot. That day I stumbled over a couple words too -- it stood out to me since I never do that....
Saturday we walked all over Palmyra and I was really suffering from heat, or so I thought. I felt like I was making lots of mistakes in my speech -- but David didn't notice. Then I noticed that I had a small numb spot on my scalp behind my right ear. Strange, strange, strange. On Sunday, back in Damascus, the speech got worse (comegranite instread of pomegranite, etc.). By the end of the day I really felt like I was having trouble simply getting sentences out that were in my head. I couldn't make small talk with strangers (imagine that for me!) -- it was stressfull.
When I got home Sunday night I wrote my melanoma oncologist and he said I should immediately get an MRI. So Monday morning by 8:30 AM our fabulous health unit in Amman had me in a an MRI machine. By 9:30 I was out and found that I had metastatic cancer lesions (tumors) on multiple sites in my brain. Most notably, a frontal left lobe that deals with oral expression (the largest at about 1.8 cm). I also have one on the base of my brain where it connects to the spine, which may or may not have to do with the scalp numbness.
So -- Monday was a fabulous day in the hospital in Amman where practically everyone I have worked or played with in the past year came to visit -- it was a big party! By the next morning I was on a plane back to New York, accompanied by the Embassy's excellent doctor -- Curt Hofer. Tuesday night we arrived in New York and took a taxi directly to the Memorial Sloan-Kettering Cancer Center hospital where we met my mother and oncologist. The past week in New York has blown by with tests and doctors and museums. David arrived from Amman on Sunday, September 9, and is going to be able to spend a month in the States (actually, we had a vacation planned now...).
So -- that's the beef. No headaches. No stroke-like symptoms. Just speech problems. In the last week the numbness on the right side of my head has covered my ear, jaw and moved down my neck and right arm. But as you will see from the blog -- treatment has begun so I hope it will all get better soon.
The plan: three weeks of full brain radiation (with weekends off). That is about all I know. There will be a plan afterward but we have to wait and see what this does before we decide. I still have a number of melanoma "freckles" on the skin of my chest -- so those have to be dealt with. I will keep you all updated regularly through this site!
August 29 I stumbled over a word. It wasn't a big deal but I noticed. Then on Thursday night (August 30) David and I left on a fabulous long weekend in Syria. Friday we left Damascus for Palmyra. It was really hot. That day I stumbled over a couple words too -- it stood out to me since I never do that....
Saturday we walked all over Palmyra and I was really suffering from heat, or so I thought. I felt like I was making lots of mistakes in my speech -- but David didn't notice. Then I noticed that I had a small numb spot on my scalp behind my right ear. Strange, strange, strange. On Sunday, back in Damascus, the speech got worse (comegranite instread of pomegranite, etc.). By the end of the day I really felt like I was having trouble simply getting sentences out that were in my head. I couldn't make small talk with strangers (imagine that for me!) -- it was stressfull.
When I got home Sunday night I wrote my melanoma oncologist and he said I should immediately get an MRI. So Monday morning by 8:30 AM our fabulous health unit in Amman had me in a an MRI machine. By 9:30 I was out and found that I had metastatic cancer lesions (tumors) on multiple sites in my brain. Most notably, a frontal left lobe that deals with oral expression (the largest at about 1.8 cm). I also have one on the base of my brain where it connects to the spine, which may or may not have to do with the scalp numbness.
So -- Monday was a fabulous day in the hospital in Amman where practically everyone I have worked or played with in the past year came to visit -- it was a big party! By the next morning I was on a plane back to New York, accompanied by the Embassy's excellent doctor -- Curt Hofer. Tuesday night we arrived in New York and took a taxi directly to the Memorial Sloan-Kettering Cancer Center hospital where we met my mother and oncologist. The past week in New York has blown by with tests and doctors and museums. David arrived from Amman on Sunday, September 9, and is going to be able to spend a month in the States (actually, we had a vacation planned now...).
So -- that's the beef. No headaches. No stroke-like symptoms. Just speech problems. In the last week the numbness on the right side of my head has covered my ear, jaw and moved down my neck and right arm. But as you will see from the blog -- treatment has begun so I hope it will all get better soon.
The plan: three weeks of full brain radiation (with weekends off). That is about all I know. There will be a plan afterward but we have to wait and see what this does before we decide. I still have a number of melanoma "freckles" on the skin of my chest -- so those have to be dealt with. I will keep you all updated regularly through this site!
19 comments:
Yes, I know she's THERE, a little sad, maybe, but transformations take time.
Although she looks melancholic on that beautiful picture, I hope, Mara's soul triumphs.
Peace to all,
Zlatna
As the blog is emptying itself, I feel the urge, on this monday morning to write something:
a few years ago I bought this cd of patti smith's - gone again - about her deceased husband, a musician too. It goes like this:
Beneath the Southern Cross
Oh
to be
not anyone
gone
this maze of being
skin
oh
to cry
not any cry
so mournful that
the dove just laughs
the steadfast gasps
oh
to owe
not anyone
nothing
to be
not here
but here
forsaking
equitorial bliss
who walked through
the callow mist
dressed in scraps
who walked
the curve of the world
whose bone scraped
whose flesh unfurled
who grieves not
anyone gone
to greet lame
the inspired sky
amazed to stumble
where gods get lost
beneath
the southern cross
I'm sorry I can't be there at the memorial weekend, but I think Ems will "cover" me when she is there. Jeroen.
Dear Mara,
I know that you are not physically with us but your kind and peaceful spirit will always be. I will remember the ringing of your laughter and contagious smile. I am glad that your are at peace dear friend. Love you, Sheila
I have many Mara stories floating around in my head. Mara has been probably the most influential person on me professionally, and personally has been a huge inspiration over the years as I've struggled with issues incomparable to what she's been through. She was my supervisor and cubicle neighbor at Mercy Corps and easily one of the most intellectually creative people I've ever met.
When I first started as the Civil Society Assistant Program Officer in 2001 Mara was obsessed with measuring impact of our diverse civil society strengthening program. She would keep me at work late every night the two of us holed up in a little room with a flip chart trying to measure impact. At the time all this was so new to me I really just followed along. We continued our project when she returned from a trip to Tajikistan where, in the midst of standing and thinking at the flipchart stand she noted that she had a bump under her arm and was going to the doctor. This was the beginning of her struggle with cancer. Instead of remembering her cancer though, I remember her incredible dedication to our work for those next couple years that we worked together and I learned so much from her. She took us to Istanbul for the worldwide MC civil society conference and in true Mara style we had to taste all the food the guests would be experiencing before the big event. She loved Istanbul so much that I instantly did as well.
We have Mara's cats. They are the most incredible cats we've ever met. So full of love and character. I'd met them twice before taking them when she and John split and had loved them from the beginning. Maddie and Grizzly bring so much joy into our lives and I always felt so good knowing that Mara knew that we loved them so much. When we were doing a long training session in Tblisi and the cats were still hers and Mara was uncharacteristically tired one night, I'll never forget her saying how nice it would be to be home that Sunday morning in bed with her kitties. She loved them so much.
I will likely share more stories later as I continue to reflect on Mara's amazing and brief life and how it's touched so many of us.
Lots of love to all of you and count me in to help with the fund and with the Mara day.
This will be teary Monday. -Sarah Buckley
A poem for beautiful Mara and her beautiful family...in honor of who she is and in honor of continuing to carry forth the way she lived. And volunteerism day in her honor and her fund are such wonderful ideas. I will love participating in both. Thank you and sending you my love, Paula Winch-Paulorinne
Red Brocade
From 19 Varieties of Gazelle,
by Naomi Shihab Nye
The Arabs used to say,
When a stranger appears at your door,
feed him for three days
before asking who he is,
where he's come from,
where he's headed.
That way, he'll have strength
enough to answer.
Or, by then you'll be
such good friends
you don't care.
Let's go back to that.
Rice? Pine Nuts?
Here, take the red brocade pillow.
My child will serve water
to your horse.
No, I was not busy when you came!
I was not preparing to be busy.
That's the armor everyone put on
to pretend they had a purpose
in the world.
I refuse to be claimed.
Your plate is waiting.
We will snip fresh mint
into your tea.
My favorite poem to help me deal with loss is "In Blackwater Woods" by Mary Oliver. The last stanza is:
To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.
I just left a comment on the "notional plans" posting but failed to mention that I have some amazing photos of Mara from my wedding in August. I'll send copies to Carol's house...
Julie
I don't know why these things happen but God has a plan. He keeps our children safe and in his hands. Our heavenly father knows the best way to care for us. I will be contacting you all soon.
Carol and George Schneider
much as I want to be eloquent and speak of how grateful that Mara's passing was peaceful, I just want to SCREAM at some unknown entity for taking my beautiful friend too soon. I had so many talks left to have with her, she had so much good work to do, and languages to learn and countries to see, and people to touch, and children to laugh with and foreign food to taste and I am angry and sad and lonely for her company and PISSED OFF at Cancer because it affects so many people I love. I had breast cancer the same year as Mara and we laughed about our flat chests and one evening she came over for dinner with my family and she just whipped off her bra and plopped the jiggly implants on the table and we howled at how crazy the whole thing was. One morning we sat on her bed in Deb and Davids basement and made matching "sister" necklaces from beads she brought back from Ghana. She loved my turquoise necklaces I made and one time she bought several for friends and several for herself. That girl had powerful spirit in her and knew how to make you feel so good about yourself. I miss her generosity and am sad for all of you and lonely for her and I know all of you are and I feel it just needs to be said that it's not fair and that I am angry at God for taking Mara. I will not be able to be at the Memorial, and I am deeply sorry to be missing what I know will be an incredible tribute to her. I will be honored to volunteer in her name, and encourage others, including my kids who have been inspired by Mara's work, to do the same. Thank you all for hearing my rant. I do believe we are better for expressing grief out loud and I am grieving for my friend daily. This blog helps- thanks David and Carol and everyone else. I know you are feeling so much pain and I wish I could relieve you of it but I can't. I am sorry for that. All my love, Jo
I just don't know what to do - I so badly miss Mara. I keep thinking brave and comforting thoughts, but I can't calm down, I keep thinking about her; Mara is in everything I see around, talk about or think of: the coffee mug on my desk, the scarf around my neck (green and warm, a gift from Mara from Turkey for Christmas, a few years back), a funny little toy-creature, nodding to the world when sitting in the sun, neck-strings of semi-precious stones she made herself, books, albums... anything I turn to take happens to be a gift from Mara, or a strong reminder of her! I desparately bring to memory scores of funny experiences we've had together, but the truth is I remain very sad and I miss her so much.
David, Carol, Gil, David, Elise and Mary, I hope you are strong!
With all my admiration and love for you!
Zlatna
I miss Mara so much... I keep thinking about her and miss her beautiful smile.
She was one day in my office when she saw on my desk a wrist pad in the shape of a cute little kitten laying on her back with her arms folded behind her head and one leg over the other. "It's so cute!" Mara exclaimed. I gave it to her of course thinking that this little kitten looks like it doesn't have a worry in the world - very befitting my Mara. The day after Mara passed away, I went to her office and looked for it. It is now back on my desk as an "unnecessary" daily reminder of this very special person...
Mara, I miss you so much.
Arwa
It is with great sadness that we absorb the news of Mara's passing. She was such a bright light in our lives in Amman. She will be geatly missed by friends and colleagues. Our condolences to David and Mara's family, Nancy and David Piet
Dear Carol, Daddy David, Gil, Elise, David, family and friends,
We have no words to say how sad we are and how much we think of you these days. We did not write earlier because we were weak and felt that we lost a member of our family. We are so grateful to have been part of Mara’s life in Berlin and afterwards. We worked together in this city, travelled together to many countries and learned a lot from each other . She once said that she knew she could always come to our house when she felt like putting her feet on the table to rest. She also knew that she could speak with us about her problems...and she did so. We were really like a family… and she was our "second daughter". She will be far but her smile and positive personality will remain in our hearts. A friend whose baby died told us once that God sent this kid to fulfill a mission. We surely all do have a mission on earth, but Mara must have had a very special one because she worked for peace and made so many people happy with her personality. Would otherwise so many people cry now?
We wish you lots of strength during this surely most difficult time in your lives. Unfortunately we will not be able to attend her memorial but we will be in our thoughts with you. We also like very much the idea of the fund and will be happy to support it.
Good-Bye, Mara! See you some day again… somewhere!
All our love,
Dany, Gadi and Liliana
Berlin
Although I've already left my Mara story on the "Good-bye" post, I just wanted to respond to Jo. I agree wholeheartedly. Anger can indeed be healing. Rage at the universe over its unbelievable unfairness has its place. When my mother died many years ago, long before her time, too (cancer also, of course), I cursed God 20 ways from Sunday. No thunderbolt struck me down from out of the blue, and it made me feel less helpless and alone. Cursing at God is a very intimate act, after all.
Of course, my anger didn't bring my mother back, but it had its place as an element of my healing. One never really "gets over" the death of a loved one (such stupid advice), but one does become able to live with it eventually, and even enjoy life again.
So all of you out there who feel the need - curse away. If there is a God out there, he/she/it can certainly absorb your rage-filled grief without feeling the need to retaliate.
Lisa
Dear Jo and Lisa,
I wholeheartedly agree with you.
In fact, Jo, I'm glad to read that I wasn't the only one felt your way.
Afterwards, I felt so throwuppalbellled(ded?) that I decided , for restauration, to make Lisa's soup.
It is more than delicious;warming to the heart.
Thank you , Lisa, for this " Lisa'sMarablogthingsoup" as it'll be known here, now. (I did't try the matzeballen yet, butÏ will)
much love, Ems
Here in Istanbul, Julia and I think of Mara morning, noon and night. Her name is always on our lips, we cannot stop talking of her--and with her. I awoke this morning thinking of Mara, and thinking of Gede.
Gede is the Haitian divinity of death, sex, cemeteries, and the crossroads. Actually he's the collective name for an army of Gede characters, the beloved dead. The Gedes are tricksters, truth-tellers, provocateurs, exhibitionists, teachers and healers. Gede is the most beloved divinity of all the Vodou pantheon, whose shrine is kept in every traditional Haitian family compound and every Vodou temple.
In Haiti, as in Mexico, November is dedicated to the dead, and the most intensive days of the dead are the first days of the month, when ceremonies are held in temples and cemeteries --Gede is invited to visit, heal, prophesize and make people laugh, cry, dance, and understand their own mortality in cosmic context. Celebrations are raucous, as costumed Gedes in mock undertaker's attire and white face swagger merrily all over town playing pranks and doing cleansings.
Haiti may be one of the few nations on earth that Mara never visited--or perhaps she did. (God knows Haiti could have used her skills.) But I think Mara would have appreciated the 'Fet Gede' [Fête de Guedé]. She would have loved the laughter and dancing, and felt a natural affinity for the trickster/healer of the crossroads.
When somebody dies, the Haitians say: "Gede te balanse kay-sa. " Roughly, it means: "Death has rearranged that house." It's a simple but profound observation about the nature of energy, which is never lost but transmuted. Death causes this re-balancing--nothing is lost, everything is changed. Gede has rearranged the house.
Mara lived and died at the crossroads, it's clear she was born for the crossroads. It was her mission, weaving together the world, lighting up the crossroads, telling the truth, making people laugh and live their best. She danced with Gede for seven years. She didn't want to die, she sure wanted to dance, and she danced with every essence of her being. And then Gede claimed her and rearranged the house.
The hard thing is, Mara's 'house' was the entire world. We were all in it. So we are all rearranged. And we have all been star-dusted with her energy.
Though I've known and loved Mara since the instant I met her, in 1994, I look back and realize that I only actually saw her about five times--these included three weddings and a New Year's Eve (the last). How can that be? I knew her so well, she felt like a daughter. Mara had that ability to make you feel you'd known her forever, intimately. Of course, I knew her so well also because Julia kept me apprised of her journey through life, which included frequent stops in Istanbul.
Carol, David, Gil--how I wish I could be at the memorial services to honor your beautiful Mara. Like everyone else on the blog, I can say truly that it was a privilege to know her, and I can feel her energy out there in the universe, lighting up the skies and illuminating the crossroads.
P.S. I re-counted and it was actually six times, not five--I forgot one lovely occasion at Carol & Gil's house in DC! And each of those 'times' involved several days of encounter, not just one. But still, I know you understand my point...
I forgot to sign my real name, which is Henrietta Cosentino (Julia's mom). My husband Don, who is just en route back from Haiti today, reported that the Fet Gede was especially intense this year. Mara was on his mind, and though he hasn't been present on the blog, he would affirm everything I said, and had his own great admiration for 'our Mara'.
Hello all,
Once again, I am so moved by someone else's post that I felt a need to comment. Henrietta Cosentino - bunyeta - what an incredibly wonderful entry for Mara. Isn't it "amazing" how often so-called "developing" cultures (I really dislike that condescending nomenclature) like Haiti have such profoundly realized (and I think far more accurate) spiritual cosmologies?
I am much comforted by the image of Mara dancing with Gede, who sounds like a diety who's company she would have enjoyed immensely. I think you characterized her to a tee - she didn't want to die, but she did indeed dance with Gede with all her heart for those seven years. I can only hope that I'll do the same when it's my turn to meet him.
Take care, all. Have some chicken soup.
Love, Lisa (Kenn)
I knew Mara, only briefly and so know few of you, her friends and co-w0rkers. However, Gil is a much admired Frat brother and to Carol(who else)I owe a huge debt of gratitude for "introducing Mara's Aunt Peg("my" peggy for the most part of a decade) who the family tragicly lost to lung cance this July 6th. Sorry for the long into. via background, all.
It was through Peggy's visits to 1910 S strees that I came to "know" a bit about Mara. While sleeping in Mara's old room. Was amazed at her collection of books(including many of her college text books)and where she had traveled and what she'd done based on Gil & Carol's stories about their childern.
By chance I met Mara on a family Thankgiving Holiday a few yrs back. I felt a connection to her as we both had hopes of becoming offical cancer survivors at the 5yr mark which we did! Ironicly my cancer was melanoma also ...after surgery chemo nearly did me in, so I have some empathy for Mara's struggle tho my challenge pales in comparison to her fight and efforts expended.
Mara, may God Bless and hold you close. You major contributions in such a short life seem duty-bound to carry on through a ripple effect; to be felt for generations by many thousands ever millions of peoples around the Globe. Few your age have accomplished that feat. That energy and love of your fellow world travelers was you hallmark to such a successful, albeit, all to brief a time here on earth.
Thank you for your example of both how to live and how to die ...all done with a style that sets a great example for us all here. Good bye, only to your mortal form, as you'll always be remembered for your gifs of love freely given. For it's not how that gift is recieved, but the spirit in which you gave that gife of love ...unselfishly and with gusto!
Viya con Dios(Signed 11/11/07: Orrin C. Stevens, a family friend)
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