Community Quilts Blog
I know I am not alone in my shock. I just learned Bill in Portland Maine has been in the hospital for several days. He had an exploratory surgery last week because of persistent abdominal pain that he has been suffering for a long time now. He and Michael (Common Sense Mainer) are now awaiting biopsy results — and as you might expect, it is a very tense time. It will be a few more days until there is any certainty about what exactly is wrong or what to do about it. The good news is that when Bill’s post-surgery bodily plumbing is working as intended, he will be able to go home and sleep in his own bed. On Facebook, Michael wrote:
I am here at the hospital. Bill walked and stood for a bit. He has an epidural numbing the abdomen area. He will be in until he can do 3 things. Pee, poop and ready...fart! We won't know anything conclusive until Tuesday maybe longer. He is in good spirits, I have been coming up here as much as possible. Billeh and I thank each and every one of you for your prayers, thoughts, love, hugs, love. We are 2 very fortunate people.
It goes without saying that Bill, who is absolutely integral to (and truly is a Founding Father of) the community through Cheers & Jeers, Netroots Nation, and through all the smiles and laughter he has brought us through the years, is getting a community quilt to help him get through this. Let’s let him know, in messages that I will transcribe onto muslin, just how much joy he has brought us and what he means to us. Let’s lift up his spirits and tell him that we love him, now and for always.
This brilliant, funny man needs us now and we can be there for him in a blanket of love.
Note: MsSpentyouth is putting together a Google catalogue of resources for Bill and Michael, something to serve as a guide for other means of help that people may want to give — so look for a diary about that very soon.
The Marti that we know online is a force of nature — a fierce and funny Irish tigress who sashays flirtaciously in shiny red pumps, attended by a coterie of handsome firemen. That’s how I imagine her. But I also see her as embodying motherlove. Marti truly, deeply cares about people — this is apparent in all the social diaries she frequents daily and particularly in the Pootie diaries, that fun oasis on Daily Kos that Marti has overseen since the untimely passing of Tricia Wyse, the late, great Pootie Queen. Marti has a huge heart.
Marti’s actual, physical heart is not as vibrant as her spiritual one, however. She has had open heart surgery and lives within the limitations that heart patients endure. She also is afflicted with constant, chronic pain in her back and all her joints, making it hard for her to do all the things she would like to do. Unless and until medical marijuana is allowed in her State, there are no good options for soothing that pain, either. Marti suffers a lot, everyday. But she never complains.
Our Marti is an uplifting presence at the heart of the Daily Kos community. You will see her cheerful self in any of the social diaries throughout the day but most especially in the Pootie diaries. She undertook the very important task of overseeing the PWB Peeps group after Tricia Wyse passed away — and this fun-filled oasis for people who love pets has thrived under the MarTiger’s leadership. Marti is funny, sassy, and her warm and naughty humor is contagious as can be. She makes everyone feel welcome and included. She makes us laugh and feel happy. She brings us closer together, all in the spirit of fun and friendship. What a gift this woman is!
What you may not know is that even though the spirit of Marti’s heart is as big and open as all outdoors the actual, physical, pumping organ has not been well for a long time. Marti has had open heart surgery and lives with all the limitations that come with being a heart patient. She also lives with considerable, debilitating chronic pain in her back, neck, and all her joints, pain for which there is no good remedy (at least not until her State allows medical marijuana) and which also greatly limits what she can do. Not to mince words, it sucks and Marti suffers.
We would like to make a community quilt for Marti so she can keep your love and friendship close, something to give her some loving energy on those days when she is laid low by pain. We love her! So let’s wrap her up in loving words as a tangible reminder to her of how we feel. Leave a message of love, support, and appreciation in a comment below and I will transcribe it onto muslin. My sister and I will then sew it into a colorful patchwork for this beautiful woman.
My Kosobility quilt, of course, it makes the rounds to various locations in the house: the sofa, main chair, bed, rocking chair. As one can see it’s placed carefully but soon taken over by a cat, the quilt is fine fabric, of course, but the felines intuitively sense something special and are always looking for it.
For those who don’t know, a Kosobility quilt is given out by a group here of disabled people—injury, sickness, it really doesn’t matter how your life got blasted, just show up in the screens if you’re hurting or have something to offer. A quilt is a symbol of kindness and comfort, of course, but much more as a expression of acceptance, hope, and affirmation of what is best in the human spirit. That quilt will be in my sight every day until I leave this earth.
The usual procedure for submission to Kosobility, naturally, is to contact the admin, she finds a slot on the calendar and one submits a draft. I always over-think it and in a way get basely upset, so I’m submitting this quietly, eventually it will get around.
I have this List in my head, right, of stuff I should or have to do. Well I screwed up last summer at Athletics Nation, I had to apologize by the end of the season and I did it. It wasn’t fun but I figured Athletics Nation is a tiny backwater of nothing in the web, perhaps 15 people would read it.
[opens hands helplessly] I still don’t understand how or why that essay was so widely read, Jesus, everybody and their brother read it. Why? It was just a necessary honest apology, now everyone knows how effed up my life is. [sigh] Oh well, the truth is its own master, Lord do I know how disastrous disregard for it can smash up a life.
A little weary, too, I having my personal life so ridiculously on display. [sigh] Forget the story, okay, there are two persons in this world who cannot talk to each other, the only way I could ever get vital personal truth known was to publish it in the screens, which never should have happened. Thankfully that phase of my life is over, just some normal news here, but still personal and soon to happen only here, and not often, I’m trying to add to the very thin layers of online privacy insulation in my life.
But this is necessary and on my List, so without further ado after 429 words of yap I will finally get to it, I have real news, enough of the fade from cyclical vomiting syndrome finally kicked in after 13 years and I can work again, I am working, have been since September, full time.
Valley people would describe it as a survival job, right, a temporary place until you can get your career tracked again. Well my career is never coming back, the people I know in the Valley are gone and I’m 53, it’s absolutely hopeless to get back in that age-obsessed environment.
When I started I was ashamed about it, I was, how the hell did a political science degree and wartime service eventually spit out this result? I’m a laborer at a landscape company with a national living wage, it doesn’t go very far in California. I work my ass off in all weather and changing locations, thank the universe for google maps.
I also got physically ripped to hell, I’m very sorry to say gym shape is nothing like labor shape, moving four yards of gravel 30 yards isn’t a fun spin on a bike. I don’t take discomfort quietly, no, and among my tough companeros I got the reputation as an angry crybaby, which thankfully has faded over the months as I toughened up and cheerfully kept trying.
I did keep trying, four guys I know since I started have quit or been fired. It’s not an easy job, I’m still surprised at how vastly together a team must be to implement good construction. But my people are honest and sincere, they would never manipulate or degrade me, and thank heavens I never have to perform retail customer service again, not a fit for me at this time, no.
I ran out of time and options to start working again, there was never going to be anything like close to ideal when I came back. This is the second time in my life things have completely blown up and I was left was ragged, sorry pieces in a small attempt to desperately put something back together again, relax, it couldn’t be anything like the ideal, whatever that is.
I was given a chance, it is real money, and the principles I apply need practice and real-time application. I don’t know what will happen, the only thing that matters is to try your best, do what you can to shut out the past or how you got here, it really doesn’t matter, it doesn’t, nor does any judgment by someone looking at your life.
Christmas was, as usual, a nightmare and I got sick. But only for a few hours, not the 12 hour usual, and thankfully I was honest with my boss about the whole story, he gave me a few days off and then I hit the schedule. I do have bad mornings and some days, I’ll never be truly well again, but mostly like today I’m all right.
After getting ripped for a month I went back to the gym, I’m there 3-4 days a week, for whatever happened in this life it did give me a decent body. I can’t sleep worth a damn since the election, as long as I work okay I live with it.
Now that this is off the List I can get to my fourth short story. [rolls eyes] My third was about secrets, it was sexual (what, people don’t have sexual secrets in this life?) and I seemed to have gained a rather notorious reputation (shocking, isn’t it?). At least the fourth will be relatively normal about two little-people brothers.
Once that’s done maybe I’ll be a political essayist again, I don’t know. My feelings got hurt during the election and I have not been around much. But I love this place, I do, and another thing on my List is to support and contribute to Netroots Nation, as usual I can’t go but I like the good people running it and believe in the idea.
[waves] I’ll keep in touch and try to make the Kosobility threads again, sorry to be away but, well, I was sort of hiding. For all that has happened and whatever could be, I am better enough to work again, it’s something. Peace be with you, I wish the best day possible for you for whatever your burdens are. You are accepted and worthy, always, no matter what has happened.
I met Robin in the waiting room at the Denver hospital. She has just finished an infusion, and i was waiting whilst my friend Maise was in with the doctor. I’ve been accompanying Maise to appointments for a while. Noticing my yarmulke, she told me about a wonderful Kosher deli near the hospital that had a dozen kinds of kugel(!), and would we join her for a nosh? We did. What a delightful and delicious introduction.
Both had/have multiple sclerosis. Progressive forms of the disease. The prognosis for Robin was complete paralyzation accompanied by near constant pain. And emotional trauma. At the time, she was 31. No family aside from a nice but emotionally distant father. A little savings and no ability to work,..the neurological implications made even sedentary work impossible. Her Masters degree would not be helpful when her remaining and dwindling funds dried up, and medicaid and poverty set-in. She was in great pain. And in great fear.
After a correspondence of close to a year, she wanted to visit my town of 2000 year-rounders, three hours south, ..it being known for having 38 spiritual centers, of different paths and lineages, all harmonious with each other, under the largest cluster of 14,000 ft peaks in the country. She no longer could go trekking through Bhutan, Nepal and Tibet..but she could meet the indigenous of those countries here and learn the practices of their lineages. To help with those inner questions that her condition brought to the surface. By then, which i was unaware..she had planned to die before the disease made it impossible for her to follow through and act on her wishes.
In the United States, there are five states that have death with dignity laws. California, Oregon, Washington, Vermont, and my own, Colorado. But..you must have a terminal illness..six months to live. Diseases like M.S...well, they’re terminal without being terminal. One can live for years, in pain and paralyzed. Hence, alas, not terminal under the laws of the land.
After a month here, she moved into my home. I’m a natural care giver, having seen friends, family, and at times mere acquaintances, through physical and emotional hardships. I had the inclination and experience. My home has a lot of room for the coming necessity of a wheelchair, and a ramp was acquired. For 10 months. We went through the trials and tribulations of this form of combat. She communed with Maise, a kindred soul also afflicted. We frequented the many Stupas, Ashrams, Ziggurats, Lodges, Sanghas, Zendos, and Centers of my community. We often visited the Great Sand Dunes that can be seen from the windows 12 miles south. Bucket List trips to Yosemite, Grand Canyon, etc. Multiple trips to the wolf sanctuary in Ramah, N.M. She loved the wolves. No hunting is allowed anywhere near our vast area, so the deer, antelope and elk are plentiful and daily visitors to my land. And their life gave Robin much solace. All animals gave her peace. She switched over to my vegetarian diet, and one-upped it by eating almost a raw food diet. That really deescalated the pain, thankfully..but not the progression. It was so advanced. And we talked..at times of her decision.
There are three countries in the western world that will assist with the difficult decision of dying with dignity. Belgium, the Netherlands and Switzerland. With medical proof, all three will help assist one to die if one has a serious but non terminal illness. All three will help any person over the age of 85 die..even if they are healthy of mind and body. All three will, in many cases, help the physically healthy partner of an ill patient also die(!!!),..to die alongside their loved one if their grief is inconsolable. Belgium and the Netherlands will help one with a mental illness die. Switzerland will do so only if the mental illness is caused by the disease in question..for example, depression or a neurological disorder. Belgium will only assist those from Belgium. Netherlands, from residents of the Netherlands. Only Switzerland will take foreigners from any country, due to a law regarding civil liberties and civil rights, that has been in place there since 1942. Dignitas and Life Circle being just two of these Swiss organizations. Euthanasia, which is where a lethal injection is administered by a physician, is legal only in Belgium and the Netherlands...whereas Switzerland only permits assisted suicide, i.e. giving the patient the liquid medication for them to take themselves. In America, in those five states, for those terminal..it is also assisted suicide. Usually a powder that dissolves in water, given to the patient to take home to be taken at their own choosing.
Robin sent her medical records to one such organization, and after being accepted, she became a member. She sent in her deposit. The knowledge that she was accepted really put her at ease. She really thought this though. She loved life. But she didn’t want to live in the circumstances that were soon to await her. She met many that were in that condition...and the thought made her visibly shudder.
There were some that thought she should live with her pain. That she shouldn’t have a choice. To her face. To those, she said...and pardon for the bluntness,
“ Soon i will be completely paralyzed, and chances are that i’ll end up in such a state, in a dingy section-8 apartment near an overpass in South Denver, waiting for an underpaid service worker to come in for three hours a day, and to digitally disimpact my bowels, as i won’t have the ability for even that”…. that always shut them down, and rightfully so.
She asked me to accompany her.
The above picture described the flight to Switzerland.
On arrival, we met the staff,...they were extremely caring and thoughtful. The head of this particular organization is a noted human rights attorney. Most that take this journey spend a week or less at the comfortable accommodations made available, before they did what they came to do. However, we spent 6 weeks living near the Italian border in a beautiful, picturesque town. Raw food was abandoned for the gorgeous cuisine. She truly felt at peace with the Monks and Brothers at various mostly Catholic monasteries and cathedrals..most ornate and grand. They were particularly loving and kind to her, the Brothers at St. Anthonys. The Vatican, especially the Basilica of St. Peter, had her in tears. Without the thought of politics or history,..and being completely in the present with a friend that will soon die..it was indescribably beautiful. Art of majestic beauty.
Then..when she was truly ready..she told me that it was time. ‘Are you sure’?, i asked. ‘We can always go back’. She smiled. It was time.
Let’s just say that those last moments, when the medicine was given and she drank..and the harpist she requested was playing at the back of the room ( this was Europe, after all...playing Jefferson Starship (!) )..was most difficult for me to hold it together. I was a paramedic a thousand years ago in the 80’s, and holding on to life was in my makeup. She seemed at peace. There was a large cat in her lap. We held hands. She smiled.. and..in a very short time...my friend was gone.
I honored her requests on what to do with her items, who should get what. What to do with her ashes. Some to be placed here. Some there. She wanted some ashes to be thrown off the Cliffs of Mohair in Ireland, which she had visited during her school years abroad. It was there, whilst tossing her ashes into the air, that i felt an overwhelming sensation of gratitude and love. I felt her presence as vivid as if she were there in the flesh. She was there...to say thank you.
I left to Ireland directly from Switzerland, and then back home to Colorado. Strange.. flying one direction with my friend in the seat next to me, and the other direction her being in a wooden box in my carry-on.
Though my home is teeming with life...various pets abound...it seemed so very quite. So quite. Internally..i was quite.
And then the phone calls and visits. From Maise. She’s wheelchair bound. 38 years old. Also with progressive M.S. Bleak prognosis. No family. I’ve known her for years. The disease has now become unmanageable for her on her own.
She moved in three months ago.
She’s tentatively planning on Switzerland in December. And if indeed it was so...would i accompany her?