There are inevitable realities that we must embrace as part of our membership in the human experience: birth, disease and death. It is within the intervening moments of these realities that we try to distinguish ourselves; define our lives; create some happiness; and for better or worse, beget a personal legacy.
In between birth and death, is "disease." Not all of us will be directly stricken. But disease will touch all of our lives in some way. Then there are those of us who find imposed upon our reality, the learning to live with chronic disease. That can be tricky. An inevitable component to learning to live with a chronic disease is the "looking over the shoulder" to see if the disease is catching up. For most of us living with metastatic breast cancer, it is fairly inevitable that at some point our MBC will indeed catch up with us. But even the inevitable can leave you feeling like you have been kicked in the gut.
This past week has been a gut kicker.
Essentially, this week I have been sitting "blog-os-phere" shiva for a fellow metastatic breast cancer journeyer. A brilliant blogger/essayist. An accomplished individual in all her own rights - a woman who did distinguish herself; defined a life for her and her husband and family; who from all sources created happiness not only for herself but for those fortunate to be within her sphere; and who bestowed a legacy that is being cherished by so many that she touched. A beautiful soul that left this pedestrian journey to explore a new path on a different plane.
cancerculturenow.blogspot.com
http://cancerculturenow.blogspot.com/2012/02/rachel-cheetham-moro-1970-2012.html
Shiva is a an integral stage in the mourning process. The first stage of mourning is aninut, or "[intense] mourning." An onen (a person in aninut) is considered to be in a state of total shock and disorientation. Initially, when I heard the news of Rachel's passing, I felt dizzy and frozen at the same time. The room was spinning, but my breathing was stifled by the emotional vertigo that gripped me. Then there was this eruption of emotion, punctuated by a deep growling sob. The sound was coming from me? How could this "force" that is ... had been, Rachel been extinguished?
Rachel's last post on CancerCultureChronicles, on January 19, 2012,included her usual snarky, intelligent and challenging style: "...Given Komen's relentless pursuit of the almighty dollar, and its almost megalomaniacal status as the world's leading breast cancer organization, is it not time for Komen to be more transparent about where it's future priorities lie and how it evaluates it's success?
Don't we, as the donating public, deserve better? Come on Komen, what's your plan for the next $2 billion, and if you are no longer for the cure, then what are you for?http://cancerculturenow.blogspot.com/2012/01/for-cure-or-not.html
Aninut is immediately followed by avelut ("mourning"). Avelut itself consists of three distinct periods.The first stage of avelut, and the most commonly known, is shiva (Hebrew: שבעה ; "seven"), a week-long period of grief and mourning. Observance of shiva is referred to, at least by western Jews, as "sitting shiva". It is considered a great mitzvah (commandment) of kindness and compassion to pay a home visit to the mourners.
Rachel Cheetham Moro
So many have been writing about their memories and feelings for Rachel. Many and most are screaming their outrage of the needlessness of Rachel's death. Rachel had not been doing well. She shared that with us. Never in a whiny, poor-me fashion. No. Her frustration and fears were expressed with humor, challenging those who read her well-crafted essays, to dare to feel sorry for her. Rachel's strength and joyful audacity was evident even through the medium of blogging.
I never had the opportunity to sit and share face-to-face conversation, and wine, with Rachel. I will never get that opportunity, at least on this plane. It is my loss.
This past week, however, I have re-read her blog entries. I have re-read her comments over the last 14 months to my blog entries, as well as her Facebook postings. I have visited her posthumous blog, sharing in the pictures and chronicles (no bad pun intended) of her life, preserved in the memories of her husband, Anthony (whom she referred to as "Beloved") and her family. I have spent this week of avelut sitting shiva and thinking about and remembering Rachel as I knew her. Contemplating how she touched my life, and what meaning she brought to our shared experiences.
Rachel was a light that I looked to each week. Especially when I was re-staged with MBC this past summer. We both had a propensity toward snarkiness and irreverence (and at times, downright hostility) toward the industrial machine that dominates breast cancer research - Komen-led, and vacuously marketed by pink banner-cutsie profit-seeking retailers. I could relate to her frustration and shared her call to change the scripted conversation that has stymied the "breast cancer conversation" these last 30 to 50 years.
My "virtual" connection with Rachel was bittersweet, however. Rachel had been living with MBC for several years when our blogging paths crossed. She had originally been diagnosed with breast cancer in 2004, and three (or so?) years later re-staged with MBC. For me, Rachel was living with "our" disease a few steps ahead of me. To witness the progression of her disease was like having the advantage of a cruel "crystal ball." Many times I wanted to through a hissy-blog-fit with Rachel and beg her to stop the chemo. Just stop! The ravages of the treatment are killing you! I could never disrespect her, or anyone else, with my opinionated prejudices. I kept my own counsel. But I am angry now. Not at Rachel and her choices. She chose the color of her journey, and bravely lived through its ruthless intentions with such enviable vitality.
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| Rachel |
This inevitable reality, although well-known but equally well-ignored, is a real gut-kicker.
Here is to you Rachel. You are still a light, a force to be reckoned with. You nurtured a legacy that will keep you present with us. You, and the 41,000, give voice to the dire need for change both in the breast cancer conversation and in the current potentates in the breast cancer industry. We must find a way for not only the voices of the 41,000 to be heard, but to be the catalyst of live-saving change.
On October 10th, METAvivor Research and Support launched its 30% for 30% Campaign in a concerted effort to improve longevity and quality of life for persons with metastatic breast cancer (MBC). The concept is simple: Since thirty percent of all breast cancer patients develop MBC -- a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to MBC. At present, only 2% of breast cancer research funds go toward MBC research and support for the disease is rare.
"People do not realize that metastatic breast cancer is widespread and deadly, and that it strikes on whim and takes 41,000 American lives every year. Survivors think they are safe because they are 5 years out ... or were diagnosed early ... or were told they are 'cured', but MBC plays by its own rules." says METAvivor President, CJ (Dian) Corneliussen-James. "People diagnosed at stage 0 as well as 30-year survivors can and do metastasize. You feel great one day and the next day learn you have MBC. Your life can change that fast." http://www.metavivor.org/METjoin_30430.php
Well said, my friend. Thinking of you during this rough time. See you soon.
ReplyDeletePatti - you are on my mind. It is quite comforting to know you are out there, and so close. YES we will see each other soon. ((Hugs))
DeleteReading your blog I had goosebumps. You expressed every emotion one could feel. Last year when another Blogger by the name of RivkA With a capital "A" died I felt gutted. I called the Rabbi here in my city cried and asked him to please pray for her during the next service. I mean I am so Catholic I went on to explain to him. I wasn't familiar with what to do. He briefly talked about sitting Shiva...I did what you did I read her blog from start to finish and then some. I read her funny emails. Our plan to see an Opera in an open venue in Jerusalem..
ReplyDeleteI haven't come to the part yet trying to make sense from Rachels death. Because there is no sense. So many women are dying unnecessary painful deaths. Someone remarked to me last week I was lucky I was "ONLY" Stage 3 Grade 3 if I was stage 4 game over..I wanted to hit them so badly. But this is the attitude of so many ignorant of the effects of Mets.
All I can say at this time. Is God Bless You! God Bless Rachel, God Bless me and everyone dealing with this shit! This was not the way our lives were supposed to end up.
Love Alli X
Alli - "being 'LUCKY' in being diagnosed with any form of is one of the most insenstive and socially awkard statements...and also one of the most common statements made by the "lay person" (well, even some medical pros). People just don't know what to say, and instead of following grandma's advice -- "if you can't say something nice don't say anything at all", out spills these inane platitudes. A combo of emotional/verbal tourettes. Yesterday, at a conference a dear and lovely lady I have known for years through my advocacy work, could only say..."well you still look good, no one would ever know." Yup, and that is so what is important...oy!
DeleteNo, this is not how our lives were supposed to end up. But then again, I never anticipated that I would be able to have 3 children; be in my profession; ...etc. Life is about the curve-balls: some you hit down the line and get lucky, others nail you in the face and leave you dazed. At Stage 4, I am still in the game, despite the hits!
Thank you for the blessings, they mean more than you can know. <3 TC
TC,
ReplyDeleteThank you for this post. I haven't been able to write anything about Rachel yet that seems worthy or meaningful enough. You certainly have done a superb job here. Like you, I've felt a wide range of emotions since learning of her death. Anger is definitely one of them.
Your statement, "This inevitable reality (dying), although well-known but equally well-ignored, is a real gut-kicker," sums things up pretty well. And you're so right, "We must find a way for not only the voices of the 41,000 to be heard, but to be the catalyst of life-saving change."
We must do that. We just must.
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