I’ve asked widows and widowers I know to share their experiences with the health care system in America. I thought we’d have unique perspective because many of us have had more experience than the average American with health care and end-of-life decisions.
The list below shows everyone who's participated so far, but please note, the project is ongoing. I’d love to have your participation using your own blog, Facebook, or another medium. If you need some help using the index linking service, or if you have other questions, please write to me direct (Supa DOT Dupa DOT fresh AT gmail DOT com).Here is the list of entries -- go ahead and add your post in the fields below.
More details and some questions and answers are in this post.
If you are interested in participating -- by sharing your experience with the U.S. Health care system or health insurance -- please write to me direct at supa.dupa.fresh AT gmail DOT com.
10.29.2009
My Testimony: Reforming End-of-Life Care
I’ve asked widows and widowers I know to share their experiences with the health care system in America. I thought we’d have unique perspective because many of us have had more experience than the average American with health care and end-of-life decisions.
You can see the list of testimonials here and please note, the project is ongoing. I’d love to have your participation using your own blog, Facebook, or another medium. If you need some help using the index linking service, or if you have other questions, please write to me direct (Supa DOT Dupa DOT fresh AT gmail DOT com).
---
As for my experience -- I have a lot to say about health care in America, and how the system as a whole has served and failed my family. My husband and I were informed and intensive users of medical services for routine care, to manage chronic conditions, and in his fight against cancer. After 40 years’ experience in what I had come to think was a very “medicalized” life, I feel I can make the biggest difference by testifying about my experience with end of life care.
However: if you are interested in more evidence against the thieves and liars of the private health insurance industry, and their captive government regulators, I’m happy to provide the evidence offline. Just wink.
I’ll also say that a public option is a must: we were fortunate to live in a state that provided a way into private insurance for self-employed people with preexisting conditions. Despite its limitations, we would have been much worse off without it.
---
The real story here is about death. The inevitable. The universal. Americans don’t ignore it: it’s in the news every day, and gosh we just eat up those vampire books.
But here’s the rub: No one should receive a diagnosis of a stage IV cancer without entering into a conversation about their final wishes.
Yes, you can fight, and you must. Strap on your Bernie Siegel and visualize away. Get everything you can from conventional medicine and stimulate your immune system with herbs all you want. (Nor should anyone be set adrift in a sea of unbelievably expensive decisions. Choosing a path for treatment should not be like choosing an entrée. I wish we’d been assigned a patient navigator.)
But understand at the same time that we are all dying. Gavin and I had had experience already; we thought we were more aware than the average bear. Patients with terminal illnesses and their families lose sight only occasionally of the black wings hovering over our shoulders. We revel in the deliciousness of this day and in gratitude. But that doesn’t mean we’re really dealing with it. Denial is complicated, and honestly, not entirely a bad thing. It can be pretty useful if you have a life to live in the meantime, and don’t we all?
But once you get really sick -- particularly after a catastrophic diagnosis like ours (which can bring on symptoms of PTSD) -- you really won’t want to cope with your will, wishes about burial, or plans for those left behind. Thank God Gavin’s advance health care directive was already in place, because I don’t think we could have done it while he was sick.
Nothing stayed the same for more than a few months. One therapy seemed to push the disease back a bit. Recovering from surgery (Gavin had two big operations) is a hurdle that requires you to build up energy and fortitude. It’s satisfying to have concrete goals. It was easy for us to forget that every step was considered palliative care from day one.
Please don’t get so far into positive thinking and manifesting whatnots that you forget you’re mortal, like we all are. Yes, you might get a miracle; but have a plan B.
At parties, we used to say that Gavin was just dying a little faster than everyone else. When we’d get in the car I’d point out he was at more risk from the daily road risks than from the cancer (especially if I was driving. But that’s another story).
For a time, even on the downhill slope, my dying husband and I were able to adjust to each lesson or new fact or change. But the last six months were a decline of breakneck speed punctuated by the brightest rays of hope: two new drugs were approved.
It didn’t matter. The first miracle drug destroyed his quality of life with fatigue that he couldn’t tolerate, despite the fact that it was working. But it looked like he had a second primary. Then one titanium strut supporting his spine broke. Then, mouth sores. Weight loss. Planning more radiation. Candida. Edema. Shingles. BOOM BOOM BOOM BOOM. Whatever you do under these circumstances, you turn away from earth. We looked up, away from each other. And we got less and less able to talk about “next steps.” The wings were beating furiously, too close. Neither of us wanted to hurt the other.
I know his death would have been easier if we’d entered hospice sooner than 3 days before he died (even the experts didn’t think he’d go that fast). Maybe he could have been at home instead of spending most of the last 2 weeks in an ICU. We might have thought differently about the risks of that second, brutal surgery. I know that Gavin had interventions that were painful, destructive, and expensive – as well as pointless.
Studies have shown that patients have “better” deaths and families grieve differently if they have individual, realistic conversations about end of life care.
Yes, our medical team did the best they could reading our states of mind and the level of conflict -- with the end, with each other -- at each appointment for 22 months. I’m sure they intended to ease us into hospice. If only there hadn’t been so many twists and turns. Or maybe if we’d been more open.
It shouldn’t have been our choice. Maybe it sounds like “planning to die” to you but having this conversation is really the only way to balance your family needs, religious and ethical values, and the non-negotiable reality of biology.
I hope I’ve illustrated how often things can change: how mixed are death’s signals. You can’t really “plan” how it will work out, but if you have an existing relationship with a hospice counselor you can discuss how you’d like to approach different scenarios. An Advance Health Care Directive is just an outline, but it can provide a basis for making ongoing decisions that comforts you and your loved ones who really, I tell you, WILL be forced to make decisions that they will always have mixed feelings about UNLESS you contribute.
It sounds awful, doesn’t it? Having to think about “how” and “when” you might die, about radical interventions, telling your loved ones whether you want food, water, what. But I watched my husband die, and I want to say I’ll never be scared of any conversation again. Words don’t break flesh down to a wisp. Worrying about hurting Gavin’s feelings, or about jinxing his miracle, were inconsequential fleas of politesse next to the Big. Giant. Mortality.
Don’t wait until there’s no “undo.” It’s the process, the conversation, that matters. Perhaps after diagnosis is too late to begin the discussion. Maybe when we hit 50 we should all talk about death. Or 40. It certainly should be part of every pre cana. Maybe it could be included in a rite of passage, if our modern lives would allow such things:
“Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows.” -- Pope Paul VI (1897-1978)
There are dozens of ways to get comfortable with your own mortality: Art, music, poetry. Psychotherapy, film, faith. Structure, freedom, study. (Bonus: you get to sound "deep" at parties.) But you have just one “today” to begin.
Above all, keep those you love close as long as humanly possible by sharing your thoughts on the end.
* * * Read more testimonials about health care by widows and widowers here * * *
* * * Comments * * *
You can see the list of testimonials here and please note, the project is ongoing. I’d love to have your participation using your own blog, Facebook, or another medium. If you need some help using the index linking service, or if you have other questions, please write to me direct (Supa DOT Dupa DOT fresh AT gmail DOT com).
---
As for my experience -- I have a lot to say about health care in America, and how the system as a whole has served and failed my family. My husband and I were informed and intensive users of medical services for routine care, to manage chronic conditions, and in his fight against cancer. After 40 years’ experience in what I had come to think was a very “medicalized” life, I feel I can make the biggest difference by testifying about my experience with end of life care.
However: if you are interested in more evidence against the thieves and liars of the private health insurance industry, and their captive government regulators, I’m happy to provide the evidence offline. Just wink.
I’ll also say that a public option is a must: we were fortunate to live in a state that provided a way into private insurance for self-employed people with preexisting conditions. Despite its limitations, we would have been much worse off without it.
---
The real story here is about death. The inevitable. The universal. Americans don’t ignore it: it’s in the news every day, and gosh we just eat up those vampire books.
But here’s the rub: No one should receive a diagnosis of a stage IV cancer without entering into a conversation about their final wishes.
Yes, you can fight, and you must. Strap on your Bernie Siegel and visualize away. Get everything you can from conventional medicine and stimulate your immune system with herbs all you want. (Nor should anyone be set adrift in a sea of unbelievably expensive decisions. Choosing a path for treatment should not be like choosing an entrée. I wish we’d been assigned a patient navigator.)
But understand at the same time that we are all dying. Gavin and I had had experience already; we thought we were more aware than the average bear. Patients with terminal illnesses and their families lose sight only occasionally of the black wings hovering over our shoulders. We revel in the deliciousness of this day and in gratitude. But that doesn’t mean we’re really dealing with it. Denial is complicated, and honestly, not entirely a bad thing. It can be pretty useful if you have a life to live in the meantime, and don’t we all?
But once you get really sick -- particularly after a catastrophic diagnosis like ours (which can bring on symptoms of PTSD) -- you really won’t want to cope with your will, wishes about burial, or plans for those left behind. Thank God Gavin’s advance health care directive was already in place, because I don’t think we could have done it while he was sick.
Nothing stayed the same for more than a few months. One therapy seemed to push the disease back a bit. Recovering from surgery (Gavin had two big operations) is a hurdle that requires you to build up energy and fortitude. It’s satisfying to have concrete goals. It was easy for us to forget that every step was considered palliative care from day one.
Please don’t get so far into positive thinking and manifesting whatnots that you forget you’re mortal, like we all are. Yes, you might get a miracle; but have a plan B.
At parties, we used to say that Gavin was just dying a little faster than everyone else. When we’d get in the car I’d point out he was at more risk from the daily road risks than from the cancer (especially if I was driving. But that’s another story).
For a time, even on the downhill slope, my dying husband and I were able to adjust to each lesson or new fact or change. But the last six months were a decline of breakneck speed punctuated by the brightest rays of hope: two new drugs were approved.
It didn’t matter. The first miracle drug destroyed his quality of life with fatigue that he couldn’t tolerate, despite the fact that it was working. But it looked like he had a second primary. Then one titanium strut supporting his spine broke. Then, mouth sores. Weight loss. Planning more radiation. Candida. Edema. Shingles. BOOM BOOM BOOM BOOM. Whatever you do under these circumstances, you turn away from earth. We looked up, away from each other. And we got less and less able to talk about “next steps.” The wings were beating furiously, too close. Neither of us wanted to hurt the other.
I know his death would have been easier if we’d entered hospice sooner than 3 days before he died (even the experts didn’t think he’d go that fast). Maybe he could have been at home instead of spending most of the last 2 weeks in an ICU. We might have thought differently about the risks of that second, brutal surgery. I know that Gavin had interventions that were painful, destructive, and expensive – as well as pointless.
Studies have shown that patients have “better” deaths and families grieve differently if they have individual, realistic conversations about end of life care.
Yes, our medical team did the best they could reading our states of mind and the level of conflict -- with the end, with each other -- at each appointment for 22 months. I’m sure they intended to ease us into hospice. If only there hadn’t been so many twists and turns. Or maybe if we’d been more open.
It shouldn’t have been our choice. Maybe it sounds like “planning to die” to you but having this conversation is really the only way to balance your family needs, religious and ethical values, and the non-negotiable reality of biology.
I hope I’ve illustrated how often things can change: how mixed are death’s signals. You can’t really “plan” how it will work out, but if you have an existing relationship with a hospice counselor you can discuss how you’d like to approach different scenarios. An Advance Health Care Directive is just an outline, but it can provide a basis for making ongoing decisions that comforts you and your loved ones who really, I tell you, WILL be forced to make decisions that they will always have mixed feelings about UNLESS you contribute.
It sounds awful, doesn’t it? Having to think about “how” and “when” you might die, about radical interventions, telling your loved ones whether you want food, water, what. But I watched my husband die, and I want to say I’ll never be scared of any conversation again. Words don’t break flesh down to a wisp. Worrying about hurting Gavin’s feelings, or about jinxing his miracle, were inconsequential fleas of politesse next to the Big. Giant. Mortality.
Don’t wait until there’s no “undo.” It’s the process, the conversation, that matters. Perhaps after diagnosis is too late to begin the discussion. Maybe when we hit 50 we should all talk about death. Or 40. It certainly should be part of every pre cana. Maybe it could be included in a rite of passage, if our modern lives would allow such things:
“Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows.” -- Pope Paul VI (1897-1978)
There are dozens of ways to get comfortable with your own mortality: Art, music, poetry. Psychotherapy, film, faith. Structure, freedom, study. (Bonus: you get to sound "deep" at parties.) But you have just one “today” to begin.
Above all, keep those you love close as long as humanly possible by sharing your thoughts on the end.
* * * Read more testimonials about health care by widows and widowers here * * *
* * * Comments * * *
10.27.2009
The Scariest Basement
My daughter’s friend has a basement that’s been all decked out by her older brother’s friends for Halloween. Short Stack was making a big deal about how great it was. But it galled me to think that merely by “working” on a holiday project someone could accomplish a more frightening basis for a house than mine.
Seriously, my basement has, ORIGINAL: a labyrinth of low-ceilinged rooms, the largest one is one-quarter unexcavated, one window total, feeble fluorescents, a giant “diving bell” (dead, orange, rusty coal-fired furnace), and a stairway to nowhere, not to mention the usual pointy bits of hardware, broken tools, and shelves of leftover flammables.
I always had fantasies that Gavin and I would someday make the neighborhood’s destination Haunted House. I mean, it’s so “Buffy,” you’ll see in a minute -- though any mausoleum would be more finished. But when Gavin got sick and death hovered around us for months, the idea lost its appeal.
A few days ago, after keying them up a bit for a contest, I took the two girls down there and this is what happened. Hint: My basement lost. Not spooky enough to freak out two little girls. Apparently it’s “healthy” and “natural” because insects can live there.
They took it even further because a child’s natural optimism must always win. The girls declared that our basement just needed some “decorations.” While I was on the phone they picked wildflowers (dandelions, weedy daisies) and some of the good dahlias, without discrimination, located glitter shaped like dinosaurs and silver pipe cleaners, and sprinkled them all about.
No, I don’t know how it turned out... I’m afraid to look.
* * * Comments * * *
Seriously, my basement has, ORIGINAL: a labyrinth of low-ceilinged rooms, the largest one is one-quarter unexcavated, one window total, feeble fluorescents, a giant “diving bell” (dead, orange, rusty coal-fired furnace), and a stairway to nowhere, not to mention the usual pointy bits of hardware, broken tools, and shelves of leftover flammables.
I always had fantasies that Gavin and I would someday make the neighborhood’s destination Haunted House. I mean, it’s so “Buffy,” you’ll see in a minute -- though any mausoleum would be more finished. But when Gavin got sick and death hovered around us for months, the idea lost its appeal.
A few days ago, after keying them up a bit for a contest, I took the two girls down there and this is what happened. Hint: My basement lost. Not spooky enough to freak out two little girls. Apparently it’s “healthy” and “natural” because insects can live there.
They took it even further because a child’s natural optimism must always win. The girls declared that our basement just needed some “decorations.” While I was on the phone they picked wildflowers (dandelions, weedy daisies) and some of the good dahlias, without discrimination, located glitter shaped like dinosaurs and silver pipe cleaners, and sprinkled them all about.
No, I don’t know how it turned out... I’m afraid to look.
* * * Comments * * *
10.23.2009
No Longer in Active Grieving? HA!
Three years after my husband’s death, it seems I’ve picked up a new hobby: trumpeting how much better things are. How I’m still a widow, living and integrating the loss into a good life, and how much easier this is than active grieving. Tales of how I regained my mojo, dated, remarried and started to settle in with what I refuse to call “a new normal.” (It’s just life!) How my kid is growing to understand that she has had two Daddys and how I am so glad I escaped the Single-Moms-Can-Cope claptrap.
Maybe grief makes me preachy. One morning while I lie in bed wondering why I can’t get anything done, why I’m overcommitted to everything, why my back is starting to go again, and how slow I'm making progress on the packing and moving business, it hits me: low motivation. Muddy thinking. I may not be full-scale depressed again, but I’m back in full grief.
Knowing this allows me to give in. Dinner’s been impossible. I’ve been cooking from scratch, for better health and better taste, plus I know I need to stretch and work my cooking muscles in order to reach full adult height again. But it’s still a damn mess between shopping and cleaning up.
Surrender means I get that one day’s worth of stuff done. I make a giant list to contain my stresses and stare at it for a few days (it should be in the recycle bin by Sunday).
And then I return to Trader Joe’s. Even as I tumble back through the welcoming automatic doors I’m grateful to have permission and something decent to fall back on. I search for the breaded eggplant and decide I’ll give their pizzas a second chance. Short Stack and I relied on Trader Joe’s frozen pizza for “movie night” for more than a year, but they deteriorated and finally jumped the shark. On the other side of the shark we found Paul Newman and he’s been fine for a year now.
(Why has no one else noticed that Trader Joe’s pizzas started to suck? I’ve been Googling it for nearly two years and either I’m the only one, or Google’s broken. But I can taste that Trader Joe’s suppliers have been using different flour and inferior sauce. Mr. Fresh thinks this is another case of the “rising standards” I’ve developed, but I remind him that “bait and switch” is a very profitable and extremely common strategy which most of us don’t want to see.)
A return to active grieving explains why we were two hours late for the dolphin show at the aquarium. Perhaps a normal person might just take the road they’re familiar with. But that is the same way we used to go, sometimes weekly, to Gavin’s oncologist. As we passed the sign for the alternate route we never took, I picked an internal conversation with Gavin. “Someday we’ll take the tunnel,” he used to say. He would have loved it. As we sped through miles of industrial zone, vintage warehouses, piles of salt, gravel, asphalt, unknown substances in cones, silos, hills, pyramids, and under fields of tarp blue, I told Shortie how Daddy would loved these images for his “industrial landscape” drawings.
But fuckit if we didn’t miss the damn exit and end up miles and miles out of our way. Thirty bucks down the toilet. (They did let us see the fish, just not the ticketed event. How could I argue?).
Grief is a saboteur. It explains why when my doctor referred me to Gavin’s cardiology specialist I said, “No, it won’t be a problem” but two years later, I still haven’t had the stress test. (They always liked Gavin. And someone from the office had to come to hospice on his last day to switch off his defibrillator. Of course they had to stop and tell me what a great human he was.).
Am I back? Back there, or back to myself? I don’t know.
Most of my minutes take place in my new life. But I don’t believe I have a “new” life any more than I like the term “new normal.” It’s just one life. We only get one (man, do we ever only get one).
It must be grief: I’m thrust back, every fall, to thinking about my Dad a lot. Because every loss recalls the first. And he used to say, when we fussed about what food was touching what other food: "It all gets mixed up in your stomach anyway." (He thought he was being funny. You know, in that “pull my finger” way.) But in some ways this is a secret of life: don’t spend too much time being careful about categories. They’re not very comfy to live in.
More coffee, some nice Piñon (Gavin spent his early years in Albuquerque and loved the smell) from Trader Joe’s, and I’ll try to get back to packing.
(And I'll report back on the pizza).
* * * Comments * * *
10.21.2009
Young Widow Support Groups, 3: Finding Peers
[Start at Part 1 and read an important notice]
I hope I've convinced you to reach out and find some peers. It can be a major pain in the ass to find a support group, because we're so rare, and as I said in part 1 of this series, just any old group may not be a good fit for you.
I'll go through the steps I've used in finding groups for folks outside my area. Then, I'll talk about some alternatives if you can't find an organized support group that meets your needs.
Another important note: Joining any new group is stressful, and things can get pretty intense among grieving people. I was advised to attend group for 2 or even 3 sessions even if I didn't like my initial visit. I'm not saying that every group is perfect for every person, only that it might be better if you don't decide based on only one impression. (Particularly if different people show up each week, as they did in my group).
(1) Work your Google, baby. I’ve had luck with “Young widows groups,” “bereavement groups,” “grief support,” plus city name, state name, region name (like, “Central PA” or “MD Panhandle”) or zipcode [or "near" zipcode].
Look at, or better, call the social workers at hospice organizations or the chaplains at hospitals. Even if they don't offer what you're looking for, they may know what similar organizations are doing. Very important: most hospice organizations offer excellent grief support groups. In most cases, you do NOT need to have used that organization (or hospice at all) to receive this support, and it's usually free. Don't be afraid of the word Hospice. These organizations have been helping people like you for years, and before the Internet, and they can be pretty terrific.
We are a small and dispersed population and appropriate services are hard to find. You may have to travel. It may be worth it.
(2) Don’t sweat the details. From what I’ve seen and heard, age and parenting status seem to be the main indicator of how well a group will connect. (In my experience, widows and widowers as old as 55 may share many of the above factors with “young widows and widowers,” but may face resistance joining a younger group.) While every grief, every situation, every widow and widower is unique, the following differences did NOT seem to affect how well my group jelled:
-- Whether the death was "anticipated," sudden, or slow
-- Formality of relationship: married, engaged, otherwise securely partnered
-- Sex. Yes, men experience grief differently, but the widowers in my group seemed to get a lot out of it. (They’ll always be outnumbered: in a small population, there’s still just 1 young widower for every 7 young widows).
-- Amount of time lapsed since loss
-- Religious, ethnic, or cultural background (unless the group leadership shows a preference)
-- Personality type: if there’s a mixture of types, there’s more room for you.
(3) Religion can be a double-edged sword. On the one hand, pastoral counseling and church communities are the backbone of support for people and families in crisis, if they were members of those communities before their loss. I found my interfaith community an endless source of hugs, appropriate sharing, ideas, and activities as well as support for my needs as a parent. And I made new friends, as well as easy paths to help others in need (which was really, really helpful in my “recovery”).
If you don’t belong to a religious tradition (or don’t like the one you’ve been with) you might try visiting a Unitarian Universalist or Quaker meeting to find if this “time aside,” contemplation, or community are restorative. These faith traditions generally welcome folks with any "creed" (set of beliefs) or none (atheists, humanists, agnostics).
But I’ve also heard of diverse Christian church support groups that simply offer Jesus as the solution to all grief needs. And for many of us -- even those who have always considered themselves faithful -- that just doesn’t work during a crisis like the loss of a spouse. Religious leaders may not have training in complicated grief, and you may feel judged by the community (even if it’s just your own baggage). Church friends -- even familiar faces -- don’t always create the most accepting environment for talking about the complex and often ugly feelings brought up in grief.
I know a lot of people who said they felt “let down” by God after loss. Platitudes about heaven or God's purpose rank high on every list I've ever seen of "annoying things people say after a death." Many widows and widowers are willing to look pretty much anywhere else for kinship.
(4) Don’t expect the group to be your only lifeline. If you need therapy or individual grief counseling, and if you can get it, DO.
(5) If you can’t find a formal support group, you may be able to find a meetup, Tweetup, or get together of some other kind. In my area, there is a county group that gets together once a month for dinner at a restaurant, and a regional group that meets “somewhere fun” every few months. To find them, I had to go to group to meet other people.
All right, Supa, I looked. There’s zero, zip, zilch, nada for me. I’m alone.
Don’t start eating worms just yet.
(1) Rustle the bushes just a bit and see if you can find a few special people near you. Ask around. Read the obituaries and write letters to people whose stories you identify with. (Yes, I have done this on Facebook. It’s not as ridiculous as it sounds. They’re looking, too).
(2) You may be able to organize a peer group in your area. I can guarantee you that folks with complicated grief will come out of the woodwork if you stomp your feet a bit.
(3) “Widow Match,” offered by the folks at Soaring Spirits Loss Foundation, sets you up with a peer for e-mail or phone communications. If you don't find the relationship (which is voluntary and unmediated) satisfying, you can apply for a second match. Again, sometimes it takes a while to get comfortable.
(4) Go online. In person support is awesome but the fact is, many people just never make it to an appropriate group. You should still find some peers to connect and share with! I created Widowed Village as an outgrowth of a community that grew up around me on Facebook a few years ago. We've grown to more than 2,000 people (as of August 2012).
Widowed Village welcomes men and women of all ages, of all faiths and traditions, gay and straight, those who were married and those who weren't, any amount of time after your loss, and with any parenting status. We have MANY people in their first few weeks and months. The site is public; check it out and see if it sounds like a good place for you. We are the only online community for widowed people that checks that applicants are actually widowed, so please allow us a little time to process your membership. Widowed Village is run by Soaring Spirits Loss Foundation (SSLF), a non profit organization, and it is always free. We are also the only organization with both online and in-person programs. Read more at CampWidow.org and SSLF.org.
(5) Consider contacting a grief counselor. I’m “online friends” with several very knowledgeable grief counselors who were widowed themselves, and some offer very useful resources on their blogs and websites. Many work with people over the phone, sometimes in groups, or on specific topics like beginning to date again. I don't have experience working with any of them, but they are everywhere, so try it out if it calls to you!
I hope this is helpful. Please let me know what you think, or send questions in a comment or DM.
* * * Comments * * *
I hope I've convinced you to reach out and find some peers. It can be a major pain in the ass to find a support group, because we're so rare, and as I said in part 1 of this series, just any old group may not be a good fit for you.
I'll go through the steps I've used in finding groups for folks outside my area. Then, I'll talk about some alternatives if you can't find an organized support group that meets your needs.
Another important note: Joining any new group is stressful, and things can get pretty intense among grieving people. I was advised to attend group for 2 or even 3 sessions even if I didn't like my initial visit. I'm not saying that every group is perfect for every person, only that it might be better if you don't decide based on only one impression. (Particularly if different people show up each week, as they did in my group).
(1) Work your Google, baby. I’ve had luck with “Young widows groups,” “bereavement groups,” “grief support,” plus city name, state name, region name (like, “Central PA” or “MD Panhandle”) or zipcode [or "near" zipcode].
Look at, or better, call the social workers at hospice organizations or the chaplains at hospitals. Even if they don't offer what you're looking for, they may know what similar organizations are doing. Very important: most hospice organizations offer excellent grief support groups. In most cases, you do NOT need to have used that organization (or hospice at all) to receive this support, and it's usually free. Don't be afraid of the word Hospice. These organizations have been helping people like you for years, and before the Internet, and they can be pretty terrific.
We are a small and dispersed population and appropriate services are hard to find. You may have to travel. It may be worth it.
(2) Don’t sweat the details. From what I’ve seen and heard, age and parenting status seem to be the main indicator of how well a group will connect. (In my experience, widows and widowers as old as 55 may share many of the above factors with “young widows and widowers,” but may face resistance joining a younger group.) While every grief, every situation, every widow and widower is unique, the following differences did NOT seem to affect how well my group jelled:
-- Whether the death was "anticipated," sudden, or slow
-- Formality of relationship: married, engaged, otherwise securely partnered
-- Sex. Yes, men experience grief differently, but the widowers in my group seemed to get a lot out of it. (They’ll always be outnumbered: in a small population, there’s still just 1 young widower for every 7 young widows).
-- Amount of time lapsed since loss
-- Religious, ethnic, or cultural background (unless the group leadership shows a preference)
-- Personality type: if there’s a mixture of types, there’s more room for you.
(3) Religion can be a double-edged sword. On the one hand, pastoral counseling and church communities are the backbone of support for people and families in crisis, if they were members of those communities before their loss. I found my interfaith community an endless source of hugs, appropriate sharing, ideas, and activities as well as support for my needs as a parent. And I made new friends, as well as easy paths to help others in need (which was really, really helpful in my “recovery”).
If you don’t belong to a religious tradition (or don’t like the one you’ve been with) you might try visiting a Unitarian Universalist or Quaker meeting to find if this “time aside,” contemplation, or community are restorative. These faith traditions generally welcome folks with any "creed" (set of beliefs) or none (atheists, humanists, agnostics).
But I’ve also heard of diverse Christian church support groups that simply offer Jesus as the solution to all grief needs. And for many of us -- even those who have always considered themselves faithful -- that just doesn’t work during a crisis like the loss of a spouse. Religious leaders may not have training in complicated grief, and you may feel judged by the community (even if it’s just your own baggage). Church friends -- even familiar faces -- don’t always create the most accepting environment for talking about the complex and often ugly feelings brought up in grief.
I know a lot of people who said they felt “let down” by God after loss. Platitudes about heaven or God's purpose rank high on every list I've ever seen of "annoying things people say after a death." Many widows and widowers are willing to look pretty much anywhere else for kinship.
(4) Don’t expect the group to be your only lifeline. If you need therapy or individual grief counseling, and if you can get it, DO.
(5) If you can’t find a formal support group, you may be able to find a meetup, Tweetup, or get together of some other kind. In my area, there is a county group that gets together once a month for dinner at a restaurant, and a regional group that meets “somewhere fun” every few months. To find them, I had to go to group to meet other people.
All right, Supa, I looked. There’s zero, zip, zilch, nada for me. I’m alone.
Don’t start eating worms just yet.
(1) Rustle the bushes just a bit and see if you can find a few special people near you. Ask around. Read the obituaries and write letters to people whose stories you identify with. (Yes, I have done this on Facebook. It’s not as ridiculous as it sounds. They’re looking, too).
(2) You may be able to organize a peer group in your area. I can guarantee you that folks with complicated grief will come out of the woodwork if you stomp your feet a bit.
(3) “Widow Match,” offered by the folks at Soaring Spirits Loss Foundation, sets you up with a peer for e-mail or phone communications. If you don't find the relationship (which is voluntary and unmediated) satisfying, you can apply for a second match. Again, sometimes it takes a while to get comfortable.
(4) Go online. In person support is awesome but the fact is, many people just never make it to an appropriate group. You should still find some peers to connect and share with! I created Widowed Village as an outgrowth of a community that grew up around me on Facebook a few years ago. We've grown to more than 2,000 people (as of August 2012).
Widowed Village welcomes men and women of all ages, of all faiths and traditions, gay and straight, those who were married and those who weren't, any amount of time after your loss, and with any parenting status. We have MANY people in their first few weeks and months. The site is public; check it out and see if it sounds like a good place for you. We are the only online community for widowed people that checks that applicants are actually widowed, so please allow us a little time to process your membership. Widowed Village is run by Soaring Spirits Loss Foundation (SSLF), a non profit organization, and it is always free. We are also the only organization with both online and in-person programs. Read more at CampWidow.org and SSLF.org.
(5) Consider contacting a grief counselor. I’m “online friends” with several very knowledgeable grief counselors who were widowed themselves, and some offer very useful resources on their blogs and websites. Many work with people over the phone, sometimes in groups, or on specific topics like beginning to date again. I don't have experience working with any of them, but they are everywhere, so try it out if it calls to you!
I hope this is helpful. Please let me know what you think, or send questions in a comment or DM.
* * * Comments * * *
10.20.2009
Young Widow Support Groups, 2: My Top 10 List
[Read Part 1, and an important notice, here]
Why was my real-life support group so vital to my healing? Why do I push everyone toward finding one (they're not so easy to find, see Part 3). There were 10 ways my participation in group helped me cope with grief, energized me for dealing with my real life, and helped me forge a path ahead:
1. Time. Even if I spent just that one hour each week at group, I knew that I was working on “me.” It was almost the only time to refresh and talk with adults (other than about work). I got practice using babysitters (as did my child and the sitters), which came in really handy later when I was ready to date.
2. Validation. I can’t describe how powerful it is to find a whole group of strangers who share at least one thing with you, who say they feel your pain and mean it, and who really “get it.” Because my group included folks from 2 months to 4 years after loss, it provided me with hope: someday I’d feel better, or at least different. And when new people joined, I could see in vivid color how far I’d already come.
3. Information. Grieving’s complicated, and you probably don’t know much about it yet. In group, you may have a facilitator or peers who help you see that there is a process to grief or just to own the complicated set of feelings that surround us; who support you in finding out more; who suggest resources or even give you homework (I have never heard of homework, actually, but I did read a heck of a lot). And this information can set you free: did you know it’s pretty normal to feel horny when you’re grieving? What a relief to know you’re not crazy (see “2.”)
4. A safe, non-judgmental place. So, on the horniness. Are you going to talk to your married girlfriends about that (or will they start hiding their husbands)? (It’s happened to more than one person I know.) How about your minister? You’re among friends and you’d be surprised how many of you are sick of being the responsible one. Or who have great stories about their in-laws.
5. Surprises. I’ve only recently gotten over the shock of the first session when our facilitator told us:
6. The soap opera factor. An easy one. Wait till the guy joins whose entire life revolved around his wife, she died in a car accident, he’s facing foreclosure, he’s about to lose his job, his son (who he’s never really gotten along with, and who has a parole hearing tomorrow) has disappeared, leaving his Xbox behind. I remember thinking, I have a kid in diapers, a senile mother in law, a useless family, a crappy job, and I have to sell my house to survive, and I’ve still got it better than this guy. (I smiled supportively at him.)
7. Bonuses. Not only will people in your group give you credit for making it out of bed that morning (as they try really hard not to look at your hair) but you can also share the smugness that comes with distance from the real world: you can now call yourself wise. Oh, those poor people out there who don’t know how close death is. We know, sweetie. Not like those people who think they have problems because they gained 10 lbs. We’re like you. It’s small revenge for being avoided by people you thought were your friends, being a wet blanket at play dates, and facing gritted teeth at holiday parties. But it’s kinda fun.
8. Laughter. We laughed like madmen and -women. There’s nothing like grief for letting go of your sense of what’s appropriate. And some of that crap, in the right safe environment, can crack you the hell up. (Some of this humor can’t be shared with your normal friends. They’ll just look at you like you’re crazy too).
9. Diversity among difficulty. Because young widows and widowers are so rare, you may find the people in your group more diverse than the folks you hang out with in the outside world. I met people with all different religious and cultural backgrounds, with whom, nonetheless, I shared an important connection. And from them, I learned some lessons and examples of great coping I wouldn’t have heard otherwise.
10. Friendship. Whether your support group remains a pleasant group of acquaintances with whom you can share, or whether you become close friends for that hour, group alleviates loneliness and isolation which are so common with young people who lose a partner. As you transition out of group and into your next incarnation, you may find some of these friends are now among your inner circle. I’m still friends with -- and inspired by -- several folks from my group and because my loss has so changed me, I try to keep in touch with many of them.
Yes, Every crisis ends. I bet I often sound like my life is so easy now, but it really isn’t. I have lots of challenges, and none of them are in the “gee, I gained weight” category (although that is true, I hardly count it as an issue. You know, [putting on wisdom hat] not after “what I’ve been through.”) Things are changing constantly, I learn something every day, I feel stuck in glue at least once a week, and I benefit from my regular therapy.
But the time I spent in group -- and several of the friends, and the energy, humor, and perspective they still share with me -- will always be in my heart, part of what formed me, just like the husband whose loss helped me find them. I’m thankful to the group and individuals who made it all work. And I want you to have the same (or better).
So promise me you’ll think about it. Please? At least, if we can find something near you (in part 3)?
Why was my real-life support group so vital to my healing? Why do I push everyone toward finding one (they're not so easy to find, see Part 3). There were 10 ways my participation in group helped me cope with grief, energized me for dealing with my real life, and helped me forge a path ahead:
1. Time. Even if I spent just that one hour each week at group, I knew that I was working on “me.” It was almost the only time to refresh and talk with adults (other than about work). I got practice using babysitters (as did my child and the sitters), which came in really handy later when I was ready to date.
2. Validation. I can’t describe how powerful it is to find a whole group of strangers who share at least one thing with you, who say they feel your pain and mean it, and who really “get it.” Because my group included folks from 2 months to 4 years after loss, it provided me with hope: someday I’d feel better, or at least different. And when new people joined, I could see in vivid color how far I’d already come.
3. Information. Grieving’s complicated, and you probably don’t know much about it yet. In group, you may have a facilitator or peers who help you see that there is a process to grief or just to own the complicated set of feelings that surround us; who support you in finding out more; who suggest resources or even give you homework (I have never heard of homework, actually, but I did read a heck of a lot). And this information can set you free: did you know it’s pretty normal to feel horny when you’re grieving? What a relief to know you’re not crazy (see “2.”)
4. A safe, non-judgmental place. So, on the horniness. Are you going to talk to your married girlfriends about that (or will they start hiding their husbands)? (It’s happened to more than one person I know.) How about your minister? You’re among friends and you’d be surprised how many of you are sick of being the responsible one. Or who have great stories about their in-laws.
5. Surprises. I’ve only recently gotten over the shock of the first session when our facilitator told us:
- a. Most of his friends now are widowed.
- b. Many of them lead completely different lives than they did before, including changing careers.
- c. Most of them are happy.
- d. Many of them are in new relationships, some of them are blending new families.
- e. Many of them say they are doing better than they ever were when their spouse was alive.
- f. Some of them even say they wouldn’t want their dead spouse to come back. I couldn’t even imagine. I was sure he was crazy, months later after some of the gals and I became friends I remember saying, “No way, not me.” (Who would ever tell you this kind of thing? How would you verify it?)
6. The soap opera factor. An easy one. Wait till the guy joins whose entire life revolved around his wife, she died in a car accident, he’s facing foreclosure, he’s about to lose his job, his son (who he’s never really gotten along with, and who has a parole hearing tomorrow) has disappeared, leaving his Xbox behind. I remember thinking, I have a kid in diapers, a senile mother in law, a useless family, a crappy job, and I have to sell my house to survive, and I’ve still got it better than this guy. (I smiled supportively at him.)
7. Bonuses. Not only will people in your group give you credit for making it out of bed that morning (as they try really hard not to look at your hair) but you can also share the smugness that comes with distance from the real world: you can now call yourself wise. Oh, those poor people out there who don’t know how close death is. We know, sweetie. Not like those people who think they have problems because they gained 10 lbs. We’re like you. It’s small revenge for being avoided by people you thought were your friends, being a wet blanket at play dates, and facing gritted teeth at holiday parties. But it’s kinda fun.
8. Laughter. We laughed like madmen and -women. There’s nothing like grief for letting go of your sense of what’s appropriate. And some of that crap, in the right safe environment, can crack you the hell up. (Some of this humor can’t be shared with your normal friends. They’ll just look at you like you’re crazy too).
9. Diversity among difficulty. Because young widows and widowers are so rare, you may find the people in your group more diverse than the folks you hang out with in the outside world. I met people with all different religious and cultural backgrounds, with whom, nonetheless, I shared an important connection. And from them, I learned some lessons and examples of great coping I wouldn’t have heard otherwise.
10. Friendship. Whether your support group remains a pleasant group of acquaintances with whom you can share, or whether you become close friends for that hour, group alleviates loneliness and isolation which are so common with young people who lose a partner. As you transition out of group and into your next incarnation, you may find some of these friends are now among your inner circle. I’m still friends with -- and inspired by -- several folks from my group and because my loss has so changed me, I try to keep in touch with many of them.
Yes, Every crisis ends. I bet I often sound like my life is so easy now, but it really isn’t. I have lots of challenges, and none of them are in the “gee, I gained weight” category (although that is true, I hardly count it as an issue. You know, [putting on wisdom hat] not after “what I’ve been through.”) Things are changing constantly, I learn something every day, I feel stuck in glue at least once a week, and I benefit from my regular therapy.
But the time I spent in group -- and several of the friends, and the energy, humor, and perspective they still share with me -- will always be in my heart, part of what formed me, just like the husband whose loss helped me find them. I’m thankful to the group and individuals who made it all work. And I want you to have the same (or better).
So promise me you’ll think about it. Please? At least, if we can find something near you (in part 3)?
10.19.2009
Young Widow Support Groups, 1: Basics
[Important notice: I'm not a professional. I have ZERO background in social work, psychotherapy, or sociology. My widow wisdom was earned "on the street," not from books. I've been there, I came out the other side, but my friendship and words can't substitute for formal counseling. Many young widows and widowers suffer from depression in addition to grief, and some of us "self-medicate" with substances. If this is you, no amount of comradeship is going to get you out of the hole unless you receive support on these (medical!) issues too. I give what I can because this shit is hard and we all need as much help as we can get. Got? Good.]
The number one factor in my healing from the loss of my husband was my weekly attendance at a free, peer-run, open-format support group specifically for people around my age who had lost a spouse. So I tell everyone to do it. My group saved my sanity, my life, and my child’s life.
But I know people who “don’t do” groups. I hear so much resistance - and I’ve heard stories about bad experiences.
The bad stories I’ve heard about groups have been, almost without exception, the result of bad fit: people going to a group with people they simply couldn't relate to. They come to me saying: “There was an 80-year-old woman grieving the loss of her cat.” “I felt like I was being rushed, one week for each stage of grief!” “None of them were working or raising kids. They were all retired.” It helps a lot if you and the people in your group are at a similar stage in life... it's not necessary, and you shouldn't expect them all to be people you love instantly or even similar to your other friends. But having shared priorities, spending your time in similar ways, helps you feel among your peers.
It shouldn't matter, experts will tell you. There is a truism that "all grief is the same." In a way, this is true. But it doesn't matter: grief is also not the only thing in your life and not the only thing you will talk about. I would not have been able to stand my group if it had been all grief education, all sharing of tears, all Kleenex-all-the-time. No one wants to attend a pity party and fewer really wish to host one.
A good group, though, is not strictly a "grief group." You talk about your lives, your feelings (which are contradictory and rich in grief, as they are at many other times in life), your memories, and your dreams of the future. You talk about your communities and your faith and all the changes in you and around you. It's not simple. It's not boring. It's who you are.
Don't let anyone cut your group down to a place where the “five stages of grief” is the only acceptable topic. That can be helpful, but you will still be a widow when you are at work, watching a movie, and when you start to consider what happens next in your life. Grief isn't simple, and neither is your life.
And finding a group of diverse people who "get" at least a little bit of your experience and your feelings is a good start to getting a grip on what you'd like to do next. Seeing them in person -- being in a room together -- is an immensely powerful force and one that Facebook cannot provide. There are ways -- I'm sure you can imagine! -- that connecting with two or three people can be much more meaningful than connecting with hundreds. You need rich data. You need real life. You need some people near you to hand you the Kleenex.
And once in a while, it's awesome to get out of the house.
In Part 2, I’ll share with you the “top 10 ways my young widows support group helped me.”
In Part 3, I’ll help you find a young widows support group – or another way to reach peers in grief.
The number one factor in my healing from the loss of my husband was my weekly attendance at a free, peer-run, open-format support group specifically for people around my age who had lost a spouse. So I tell everyone to do it. My group saved my sanity, my life, and my child’s life.
But I know people who “don’t do” groups. I hear so much resistance - and I’ve heard stories about bad experiences.
The bad stories I’ve heard about groups have been, almost without exception, the result of bad fit: people going to a group with people they simply couldn't relate to. They come to me saying: “There was an 80-year-old woman grieving the loss of her cat.” “I felt like I was being rushed, one week for each stage of grief!” “None of them were working or raising kids. They were all retired.” It helps a lot if you and the people in your group are at a similar stage in life... it's not necessary, and you shouldn't expect them all to be people you love instantly or even similar to your other friends. But having shared priorities, spending your time in similar ways, helps you feel among your peers.
It shouldn't matter, experts will tell you. There is a truism that "all grief is the same." In a way, this is true. But it doesn't matter: grief is also not the only thing in your life and not the only thing you will talk about. I would not have been able to stand my group if it had been all grief education, all sharing of tears, all Kleenex-all-the-time. No one wants to attend a pity party and fewer really wish to host one.
A good group, though, is not strictly a "grief group." You talk about your lives, your feelings (which are contradictory and rich in grief, as they are at many other times in life), your memories, and your dreams of the future. You talk about your communities and your faith and all the changes in you and around you. It's not simple. It's not boring. It's who you are.
Don't let anyone cut your group down to a place where the “five stages of grief” is the only acceptable topic. That can be helpful, but you will still be a widow when you are at work, watching a movie, and when you start to consider what happens next in your life. Grief isn't simple, and neither is your life.
And finding a group of diverse people who "get" at least a little bit of your experience and your feelings is a good start to getting a grip on what you'd like to do next. Seeing them in person -- being in a room together -- is an immensely powerful force and one that Facebook cannot provide. There are ways -- I'm sure you can imagine! -- that connecting with two or three people can be much more meaningful than connecting with hundreds. You need rich data. You need real life. You need some people near you to hand you the Kleenex.
And once in a while, it's awesome to get out of the house.
In Part 2, I’ll share with you the “top 10 ways my young widows support group helped me.”
In Part 3, I’ll help you find a young widows support group – or another way to reach peers in grief.
10.15.2009
Leaving One Home
We ornamented this home with love and art, fitting the way Gavin and I lived. The transom window above is glass with cut copper by a dear friend.
This house is full of so many memories: of most of our years together, of infertility, of our new baby. Memories of the first time he died (a cardiac event, years before cancer), my first call to 911, and my subsequent trip to Burning Man, and of how we reconciled our life in this world, his visit to the next one, and that temporary alternative world in the Nevada desert. Of my two years in grad school, of eight years of trying to conceive, of the two years of Gavin’s illness and the three years since then -- times of desperation, exploration, titillation, satisfaction. And the beginnings of our new life: Mr. Fresh joining our family, Shortie starting to read.
Some things I hope I’m leaving behind: I never want to be sole breadwinner or a single parent again. I aim to never again watch my sex life decay or make the wrong compromises to keep home stable. I’d like to be someone who a professional to fix a broken toilet. (The home repair stories from this house are nearly as tragic as the cancer.)
It makes you think. This departure is real (sort of -- After the move I'll still have to empty Gavin's studio). Obviously the art will all move with us but I can’t figure out a way to bring this little window. I’ll be sharing more of the art we hung -- and the memories they stir up -- as I pack everything up for our move.
* * * Comments * * *
10.13.2009
The Boys Are Back: Movie Review
Hollywood loves the widower as romantic lead. Clive Owen’s character in the Boys are Back promises a trifecta cliché: he cared for his wife when she had cancer, he parents their small child, and he has no idea how to do laundry.
I can see the screenwriters salivating: enter the beautiful divorcee with a kid the same age, cue music, and as the sun sets we know closure’s been reached.
And no one really expects a movie to hit it on the head when discussing an issue like losing a partner and raising a child amid the stress and numbness of grief.
But as a young widow who parented under strikingly similar conditions, I can testify that The Boys Are Back (based on a memoir by Simon Carr) gets it right. The pictures are not pretty: man and boy alternate between fisticuffs and catatonia. House goes to pot. Cooking is neglected, alcohol abused.
As I did, Joe faces competing grievers (his mother in law, trying so hard to be good) and dense supervisors who call him “brave” but do, by God, expect him to travel. By beautiful, unvarnished images of the light and empty bottles littering our mourning household we know Joe’s isolation. The images are real and speak of the gritty abysses and sparkling appreciation we feel in grief.
And the man finds his way. Largely as I did: by watching his child. We see Owen’s unshaven visage as the light glints on water, as his son makes and enjoys unspeakable messes with the pure delight a child keeps, even in the darkest times. In the theater, some around me said they couldn’t believe the way the son reacted to his mother’s impending death. But I can certify that Nicholas McAnulty as Artie, spacey and intense two mintues apart, demonstrates authentic, age-appropriate response to loss.
In the Boys are Back it’s palpable, even at the end, that the boys’ loss doesn’t go away or even lessen. Father and sons (yes, there’s a subplot) never lose sight of what has left the world -- they know they’ve been cast out, each alone. But fighting turns to horseplay, the washing gets done, and it’s implied that after some time, the boys might consume a vegetable or two.
Their contempt for the ways of the world turns into a playful disrespect for the rules that don’t work after serious shit goes down. We know the man will find joy again, but the film doesn’t take the easy way out by giving him the blonde just under his nose, at least not yet. The movie’s not perfect, it stacks up twists and promised near-endings in the last third as they always do, perhaps to justify the screenwriter’s pay. It’s not something I understand, though I do always roll my eyes.
But as a widow with a young child, I not only felt validated by, but appreciated the perspective given by The Boys Are Back. I don’t get out much, but I’ve never seen such a sensitive portrayal of fatherhood. It’s a nice break from the usual romantic widows and widowers (cured by love!) of Sleepless in Seattle and One Fine Day. I wonder how the film will play to men. I have no idea how it can be marketed.
There are as many ways through grief as there are through any other challenge of growth, or of parenting. I wonder if those who see it will feel more compassion and less fear of those of us who’ve come so close to falling with our partners. I’d love to hear what the widowers think of the movie.
The Boys Are Back provides a refreshing view of fatherhood and a realistic glimpse into the world of a grieving family.
[Read reviews by widowed Moms Candice and Abby.]
[Financial disclosure: I received a free ticket to the screening of the film. I bought my own Coke and paid for parking.
Content disclosure: My review is based on what I saw. I missed two minutes of the film when I went to pee.]
* * * Comments * * *
10.08.2009
Stronger in the Broken Places
(Photo from the Freer Gallery of Art, Smithsonian Institution)
Dang, is that just the saddest thing you ever saw? No symmetry. Muddy. Gapingly broken.
Look a little closer. This modest, misshapen pot bears a scar of pure gold.
In Japan, broken bowls are sometimes repaired with gold lacquer by masters in the art of kintsugi. On occasion, if a shard is missing, the master will create an insanely detailed gold-on-gold flowered piece for a jagged patch. Maybe it shows cherry blossoms, always dying.
Years ago an artist friend told me about this tradition, now that the time is right I can go see 13 precious examples at the Smithsonian Freer Gallery Washington DC. So treasured is this work that the scarred pottery can be worth more than the pristine.
Kintsugi follows the Japanese aesthetic idea of wabi sabi, a big part of the tea ceremony:
Tea-ceremony aesthetics often focused on the beauty in imperfection, Freer Curator of Ceramics Louise Cort explains. “Even in tea bowls that were not repaired, people came to look for the slight idiosyncrasies, even flaws, in the glaze that made one bowl more interesting than another. The context of tea drinking created a moment of awareness of transiency, of the way in which all objects, like all human beings, exist in a fleeting way and are decaying.”
Talk about “death is the mother of beauty.”
Maybe each of us is an apprentice in kintsugi. How lucky to be learning the skill to restore use to something shattered. To gain the skill to be surprised by, and then to redeem, a creation that was headed for the trash. The bowl pictured above may have been a defect of a bad kiln, rescued by being deliberately smashed and fixed.
Grieving people are both vessel and master-in-training. Go find your lacquer (the one they used is made from a relative of poison ivy). Maybe you can already spot a healing sap or ore through a crack, or you might have to mine deep. I’m sure the kintsugi master relies on others to find the rare ingredients he needs: he probably pays dearly for them.
And imagine how strong that bond of metal is on the fragile clay walls. Isn’t every scar thick, carefully made, a living demonstration of what we’ve been through? Why don’t we treasure each other’s laugh lines?
I feel stronger and more beautiful than ever, inside and out. This new self was forged by motherhood, by loss, by falling on the floor and breaking. And then, with help, I reached into the fire and pulled me out, and used loving, hurting hands and a creative spirit to heal.
* * * Comments * * *
10.06.2009
Testify About Health Care: Let's Share Stories and Make a Difference * UPDATED *
A couple of us have been talking about doing something. Won't you join us?
WHO
Widows and widowers with blogs, Facebook pages, or other media.
WHAT
Please join us in creating a collection of individual testimonials about health care and health insurance in the U.S. You can be for or against specific policies but you must base your post on facts and not simply state your opinion. The goal is to provide real stories about the strengths and weaknesses of the health care “system.” Wear your “civic” and “civil” hats when you write: your testimony should aim to elevate discussion, not provoke.
WHEN
No deadline; project is ongoing.
WHERE
All over the Internet, starting here on Freshwidow.
WHY
I believe that many of us who’ve faced loss can offer unique perspectives on what works and what doesn’t in our health care system. By consolidating our responses, we hope to gain visibility and shed some light on the debate over reform.
HOW DO I PARTICIPATE?
1. Write your story. Please limit it to your actual experiences and be specific. Suggestions: Give background, assume the reader doesn’t regularly read your blog. Provide numbers to strengthen your case.
2. Write a headline that gives an idea of your specific perspective and topic.
3. Post your testimonial on your blog or in a note on Facebook. If you use a blog, please consider allowing comments on this post, even if you don’t normally do so. If you use Facebook, make sure people who aren't your friends can see your "notes."
4. Come to the Health Care Testimonials post and add the link to your specific post. There will be a "Simply Linked" form (like “Mr. Linky”) set up to make it easier. Put BOTH of these things under "link title": your name or your blog name (or both), your post title.
5. Go back to your blog and update your post to include the link to the Health Care Testimonials.
Here's the code to do that:
<a> href="http://freshwidow.blogspot.com/2009/10/testimonials-about-health-care-testing.html"> * * * Read more testimonials about health care by widows and widowers here * * *</a>
6. Tell everyone! Circulate the link to this post, include it in widgets on your blog, Tweet it, add to your Facebook status, etc.
UPDATE
Question: What if my story is boring? Like, we had insurance and everything was covered?
Answer: Your story will STILL be of great value! A lot of people (I am thinking in Congress) don't understand much about real life medical situations, so the testimonial (with context) will help illustrate, in your case, how the system DOES work. For example, part of my story is that Gavin was self-employed and born with a heart problem, but he was covered by a state "high risk pool" program. Without that, he would have had no insurance for 30 years b/c his income was too high for Medicaid.
I'm firmly convinced that sharing our experiences can illuminate the boring details for many people, so keep those questions and ideas coming and JOIN US!
* * * Comments * * *
WHO
Widows and widowers with blogs, Facebook pages, or other media.
WHAT
Please join us in creating a collection of individual testimonials about health care and health insurance in the U.S. You can be for or against specific policies but you must base your post on facts and not simply state your opinion. The goal is to provide real stories about the strengths and weaknesses of the health care “system.” Wear your “civic” and “civil” hats when you write: your testimony should aim to elevate discussion, not provoke.
WHEN
No deadline; project is ongoing.
WHERE
All over the Internet, starting here on Freshwidow.
WHY
I believe that many of us who’ve faced loss can offer unique perspectives on what works and what doesn’t in our health care system. By consolidating our responses, we hope to gain visibility and shed some light on the debate over reform.
HOW DO I PARTICIPATE?
1. Write your story. Please limit it to your actual experiences and be specific. Suggestions: Give background, assume the reader doesn’t regularly read your blog. Provide numbers to strengthen your case.
2. Write a headline that gives an idea of your specific perspective and topic.
3. Post your testimonial on your blog or in a note on Facebook. If you use a blog, please consider allowing comments on this post, even if you don’t normally do so. If you use Facebook, make sure people who aren't your friends can see your "notes."
4. Come to the Health Care Testimonials post and add the link to your specific post. There will be a "Simply Linked" form (like “Mr. Linky”) set up to make it easier. Put BOTH of these things under "link title": your name or your blog name (or both), your post title.
5. Go back to your blog and update your post to include the link to the Health Care Testimonials.
Here's the code to do that:
<a> href="http://freshwidow.blogspot.com/2009/10/testimonials-about-health-care-testing.html"> * * * Read more testimonials about health care by widows and widowers here * * *</a>
6. Tell everyone! Circulate the link to this post, include it in widgets on your blog, Tweet it, add to your Facebook status, etc.
UPDATE
Question: What if my story is boring? Like, we had insurance and everything was covered?
Answer: Your story will STILL be of great value! A lot of people (I am thinking in Congress) don't understand much about real life medical situations, so the testimonial (with context) will help illustrate, in your case, how the system DOES work. For example, part of my story is that Gavin was self-employed and born with a heart problem, but he was covered by a state "high risk pool" program. Without that, he would have had no insurance for 30 years b/c his income was too high for Medicaid.
I'm firmly convinced that sharing our experiences can illuminate the boring details for many people, so keep those questions and ideas coming and JOIN US!
* * * Comments * * *
10.05.2009
It's NOT going to be okay.
[Embroidery and photo by Sew-Charmed]
I remember one turning point in a single phrase uttered by a trusted friend. One statement that made a difference and cut through the fog of the period between when I realized my husband was dying and the time, after he died, when I really understood he wasn't coming back. It was not a comfort. (Warning: this is not advice. Do NOT try this at home.) She said:
Wait a minute. It's NOT going to be "okay." You won't come out of this experience just fine, and neither will your little girl. This will have a huge effect on your lives. It will change you both and you will never be entirely "better."
Hearing this, from someone who knows me well and who I trust as an authority, hurt my ears. How dare she tell me that the platitudes I'd been spouting a moment before, the hard work I was doing to keep myself afloat, was not valid? We won't be okay?
But she'd been there. I sat there, eyes smarting, shocked silent.
Yup, a smack in the face sure makes you listen.
What I mean is, this is a major loss. It's not simple and it's never going to go away. But you can affect how you'll come out of the experience. You can develop the tools to survive and even flourish, you're already far along in creating and using them. And at this point, you have to do it for yourself and for your child. But it's not going to happen on its own.
You'll have to do it, and from now on, you'll have to do it on your own.
But I'm sure we'll be okay, I mean... surely we'll heal...? Things have to get better.
They will get better. Your life will go on, and you will probably be happy again. You might even be stronger and better off. But nothing will be the same. An event like this will leave scars. It's been hurting you for years. You can't just undo it all. Don't you have some scars now -- don't you have a big one on your arm?
Yes.
Can you remember how you got that one?
Yes.
Does it still hurt? Does it hold you back now?
(I laugh). No.
This momentary exchange was a fulcrum, one of several tiny thought shifts that changed everything. My friend's first words shattered all my comforting rationalizations, forcing me to see that our future would be shaped by my choices and my actions. I became conscious, for the first time, that I deeply believed someone would stride up one morning (but after coffee) on a great white horse and save us.
I hear this from my bereaved and lost sisters and brothers all the time, too. I think it is connected to a great deal of the pain and helplessness we feel in the depths of our loss.
I really wanted everything to be easy, but I couldn't remember anyone ever saying recovery would come on its own. Didn't someone promise me a rose garden, sometime long ago? Perhaps I told myself as a child, when, like my own child, I had no other tools but hope. The idea took root. And it probably held me well for a long time.
Remembering what a scar means and how it lasts -- hearing that there was no way out without injury -- helped me drop my blind faith in the hero on the white horse. I started to imagine what I could do if I stopped waiting.
Sometimes, you do need to rest in order to heal. But that time was over for me. I could feel myself starting to climb the hill, neglected calf muscles again pumping good blood to my heart. I didn't know where I was going, but it hurt so much that I knew I was moving up.
* * * Comments * * *
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