I was recently triggered (unintentionally) by a friend's blog to return to a place of feeling ...it's hard for men to feel so we repress those feelings and live in the moment. Often we forget that there is a history to the present moment ... a continuous thread which pervades life and living. I needed to go back and remember Adam prior to July 24, 1998, the moment of his accident and a point in a timeline of change and personal growth. These moments below allow me to remember and experience that "chronic sorrow." That is good...because I know that today is the same as yesterday, and, in many ways, better.
"Chronic sorrow " is a set of pervasive, profound, continuing, and recurring grief responses resulting from a significant loss or absence of oneself (self-loss) or another living person (other loss) to whom there is a deep attachment. The way in which the loss is perceived determines the existence of chronic sorrow...a painful discrepancy between what is perceived as reality and what continues to be dreamed of. The loss is ongoing since the source of the loss continues to be present. The loss is a living loss." p.26
"While chronic sorrow is conceptualized as being normal and understandable, there are no formal and customary social supports and expectations, rituals or recognitions of the catastrophic loss, since the person who is the source of the loss continues to live. Adaptations are usually drastic and disorienting. Simultaneously and absurdly, the person who is the source of the sorrow may at times be socially unrecognized, as if he or she does not exist. If there is no existence, there is no loss; therefore the grief is unacknowledged and unaddressed by society." p. 2
The above quotes are taken from a book, "Chronic Sorrow", by Susan Roos
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| Couldn't crop out the stomach and double chin, but that was long ago ... bit different today (sayin' that makes me feel better) |
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| Taken just days before the accident (near-drowning) |
.....everyday is better than yesterday....the honor of caring for a severely disabled child/man.
One of the best blog posts i have read ever!
ReplyDeleteThanks, Gavin, it has been quite an honor having you with us on many steps of our journey and I hope this will continue as we pursue our work with the young man. ABR has literally been a life-saver!!!
ReplyDeleteBeautiful pictures of my nephew and family.
ReplyDeleteThanks, Pam....time goes by too quickly
DeleteDear Phil,
ReplyDeleteYour blog cam in as I was sitting with a 24 yr old male discussing the meaning of ritual, ceremony & initiation in this culture. We had just touched on the collective grief that is invisible within us as individuals and collectively in this culture when we remain unacknowledged in the crucial crossroads of our lives . We were interrupted and I took the opportunity to check my e-mail and read your blog. First I read it, then, to him.
We were in awe of the many ways your total honesty spoke to our conversation.
Then later I was rummaging through my bookshelf looking for something and this set of notes from Krishnamurti's INWARD REVOLUTION fell open:
"COMPASSION MEANS PASSION FOR ALL, WHICH YOU CAN ONLY FIND THROUGH THE FLAME OF SORROW.
PASSION, COMING FROM THE FLAME OF SORROW BUT WITHOUT UNDERSTANDING THE MEANING, THE DEPTH OF SORROW, YOU WILL NOT HAVE THE ENERGY OR VITALITY, THE VERY PASSION NEEDED TO INVESTIGATE AND FIND OUT FOR YOURSELF WHAT LOVE IS...
ONE CAN ONLY SEE SOMETHING VERY CLEARLY WHEN THERE IS NO CHOICE...TIME IS THOUGHT AND TIME IS SORROW...
LOVE HAS NO TIME"
So, may the fruit of your sorrow not be chronic, but a transformation of a flame of love that endures day in and day out....that the flame be eternal, and not the sorrow.
My question is: How would you create an acknowledgement for yourself and the community of parents of disabled kids look like?
okay...
much love comin' your way
Terri
Terri, thanks for your insights and wisdom, once again. The sorrow is somehow chronic and does extend over many lifetimes. Those lifetimes fuel that passion at levels not quite discovered by me . . . I guess I try to confront the indifference that disabled feel; I fight for their right to determine what is right for them. I am sure the flame will be eternal and it does draw its strength from some wounds which never heal. Ya gives me so much to reflect upon...thanks!
DeleteMy, my, my....I want to say my goodness but I've read your subtle feelings towards "organized religion" :-)
ReplyDeleteLovely post; I feel honored to have read that and thank you deeply for sharing your pictures with your readers.
Thanks for dropping by this place and thanks for the kind feedback...I also look forward to following your journey. BTW, I have few subtle feelings about issues...makes my life as a care giver that much more exciting. A second BTW, in a bizarre sense I still see Adam as 12 years old, and not 26...it's like time freezes. Warm wishes and my best regards.
DeleteDear Phil, I'm with Gavin, one of the best blog posts that I have EVER read! I love you guys so so so very much and am thankful to have you in my and my families life, and I don't have the words to express how much you mean to me/us. Sending you one of my super bear hugs. Love you, Mel xxx
ReplyDeleteThanks Mel, you make me blush; I always am open to those bear hugs and I certainly feel the same way about you guys...always loyal and faithful. PS Have been looking up info about the iRobot now that you peaked my interest...if it's not a great robotic vacuum, it will chase my dog around the house. We're all lucky to have great kids.....makes it all worthwhile.
ReplyDeleteI am sitting here at my computer, scrolling through your words, your beautiful son's photos, beautiful and always beautiful. Tears are streaming down my face -- tears of sorrow and chronic sorrow, tears of love, too. Thank you for sharing him with us, then and now and always.
ReplyDeleteThanks, Elizabeth....In a way the sharing was for me also...when I repress what was or could have been for long, the dam breaks...somehow touching the past allows living in the present to become that much more valuable.
DeleteThe last picture of Adam, in hospital, was too much for me and I could not comment yesterday as a result.
ReplyDeleteSome go into hospital, even for life threatening reasons and somehow persevere, even get better. Your son went in, technically brain-dead, and if he was coming out, you knew you weren't getting back the person you had created on this earth, the one you had nurtured and loved, observed developing at a certain pace into a complex functioning human being.
The tragedy cannot be wiped away, what is done is done. But the triumph, as seen in his smile, is so much greater therefore.
Thanks, Eric, for being here as usual. You are so right that smile, every morning sustains. The triumph is great....it is so amazing to constantly re-discover that which sustains us and to know that the "it" is within us. Regards to Segev and dad...
DeleteI'm sorry that I've taken so long to respond to your post Phil. It had a profound effect and I needed to gather my thoughts. I always admire the way you view life Phil. You inspire me and add to my resilience. I have definitely spent too much time dealing with chronic sorrow. I don't quite understand how it works. I have never felt sorry for myself or my situation - but the blog you referred to at the beginning of your post struck a chord with me too. I look at your situation and those wonderful memories and I know these pains are never going to be resolved. I still feel the pain for my two little babies who were never going to be all the things a mother dreams for her children. I just have to keep reminding myself that they are here for a much greater purpose. They have brought out a person in me that I didn't know existed before them. I am a much better person than I ever thought I was capable of being. I am so much more knowledgeable now, so much more capable, more giving and more compassionate. I hope I am passing that on to others. Their siblings are definitely more stronger and open-minded than I was as a young person. We've also got to just give ourselves a bit of a break and think - 'Are we making them happy, do they know they're loved?' The answer is, of course, yes! Sometimes it doesn't feel like it's enough but I think that's where we're just beating ourselves up and the chronic sorrow sets in. I'm never going to quite get over the sorrow - yet they make me happier and laugh more than anyone else. So life is weird. We can do this. You inspire me - so you're doing something right. Just keep doing it and keep loving that boy - 'cos I'm as sure as hell that he's loving you right back.
ReplyDeleteMarcelle, thanks you for always thoughtful and insightful words. It amazing how in different parts of the world we share a community with the same experience, the same pains and joys, the same types of wounds which never seem to heal. The inspiration is certainly mutual...and I drawn strength from that. I am still aghast that strength comes from those so far apart sharing the same tears and anxieties, and not from those nearby were it should come. This understanding is so very important to me. I am always grateful that you share your life with us. With my warmest regards....
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