Thursday, August 26, 2010
Not my usual kind of post
By Edward Copeland
With some rare exceptions, I try to keep this blog clear of non-entertainment-related posts, mostly because that's not why I think this blog exists but also because I suspect that people don't come here to read about me. I know I wouldn't. I've usually restricted that sort of thing to Facebook notes. There have been exceptions, but today I can't help myself. No reviews, analysis or critiques today, at least in the realm of entertainment, and if this holds no interest for you, I suggest you move along right now.
There have been exceptions, as I mentioned, that deviated from my purely entertainment focus. Early on in this blog's history, I was hit with one of the most painful moments of my life when I lost a dear friend and felt compelled to write about her to explain my sudden absence from the blogosphere.
When medical incompetence placed me in hospitals for four months, mostly without computer access, when I did get a chance to get online I felt compelled to post an explanation for my sudden and unexplained disappearance.
During the 2008 election, I was hurt when I had to break off one of my longest friendships because while I'm perfectly able to have friendships with people who differ with me politically, he'd gone off the deep end in a way that sort of previewed the way some of the scariest and most extreme anti-Obama protesters behave (and this was before the election). I had to vent, out of sadness and fear for what was happening to political discourse in this country.
Finally, when a new turn in my health and its treatment made it appear that typing on the computer and watching TV would be a near impossibility, I wrote a sad farewell, anticipating another blog hiatus. Luckily, that turned out to be a solvable problem that did not last long.
Alas, this post will be my most personal. It will be full of sadness and anger and I feel I must use this forum to scream to the world my frustrations: with the deplorable health care system in our country, the relationship with my father and to beat up on myself for mistakes that I've made. Even if no one at all is out there reading this, I must work my way through this for myself because I'm at a particularly low point in my life and I feel as if I have more virtual friends and allies out there in the blogosphere than I do in real life, not that I have much of a real life anymore.
I've alluded often here to my health, but have never been too explicit, so I thought for purposes of this piece, I would be. In January 2005, I was diagnosed with primary progressive multiple sclerosis or, as I refer to it now, the good 'ol days. I still was able to work full-time for three years after my diagnosis, though I did have to use a wheelchair, but I could walk short distances, especially with a walker, and could get out of bed on my own, for instance, to go to the bathroom in the middle of the night. The M.S. actually preceded the start of this blog and I never even alluded to it for a long time because I felt it made no difference. The only reason I finally had to quit work and go on long-term disability was that the fatigue factor got to be too much and I just couldn't last through an eight-hour shift without taking breaks. I also began enduring severe headaches that got in the way of my focus, which didn't go well with my job as a copy editor. I might miss something important or write bad headlines.
The worst part of primary progressive M.S. is that it's one of the rarest forms of M.S. There aren't periods of remission as there are in the more common types. Sometimes the disease's progression will plateau, but it never gets better. It just gets worse and no drugs have been found to successfully treat it. However, it wasn't M.S. that made me bedridden. It was a greedy and incompetent urologist.
All my life I've had bladder problems. Well into my childhood, I was a bedwetter, though that eventually stopped. Unfortunately, I got hooked up with a cut-happy urologist who pawned most of his patients off on his P.A. (Rule of thumb: 9 out of 10 doctors who have PAs are in it for the money.) so he could spend more time on surgery in a center his surgical group owned so he could make even more money. He pressured me into installing a suprapubic cathether, saying my bladder had failed. If I'd been on my game, I should have said, "Wait. I've had these problems all my life. Let's take some tests." However, with additional pressure from my father, we had the surgery. It started going wrong that very first night. (The surgery occurred May 5, 2008. Following, we got a form sheet with no details on how to dress the wound a followup appointment set for JULY 1!) After 8 days of struggle, Dr. Greed finally suggested we go to an ER. When firemen and paramedics lifted me off the bed, we discovered in that short of time I had developed a bedsore on my backside so large you could shove two fists in it.
I'm sparing you all the details of the hospital stays because I have other things I'd rather get to, but needless to say it led to stays at two hospitals for about four months and, despite my pleadings at both places, neither did much to work on my legs to get them going again and if you don't start trying to get therapy started on legs, even if you were a marathon runner, let alone someone such as myself, you lose them forever, which is what has happened to me. Of course, despite all the doctors, nurses and physical therapists who have said as much to my father, he's so nuts he still thinks that if I had therapy that somehow they'd work again and it's all my fault when the fault lies with the understaffed, underpaid, horrible health care system most Americans have to take part in. If you have the money, you can get the best. If you don't, you get what I get. During the whole health care debate, while I think it's better to have health insurance than not, part of me always was thinking: Be careful what you wish for because now people might have insurance, but they'll be subject to an awful system that's as likely to kill them as not having insurance would. Read this horror story that was in The New York Times earlier this week.
One other brief note about Dr. Greed: He decided that I had to have a second surgery to implant a new suprapubic catheter and clear out all the calcium deposits that had wrapped themselves around the first one. After I eventually fired him and got a new urologist, I asked the new guy what to do to stop the calcium deposits, which tended to clog my foley tube and lead to bladder and kidney stones. He just advised drinking lots of water. One day, it finally dawned on me: It's calcium. Cut out milk and as much calcium as possible. I did and it was never a problem again. Of course, the other doctor wouldn't have suggested that because it's not in a doctor's financial interest to get people well: There's no money in that. It makes me wonder that if Dr. Greed had bothered to X-ray my bladder and had seen the calcium before and I'd remembered my lifelong problems and reasoned the calcium out earlier, maybe I'd have deduced the reason my bladder wouldn't empty wasn't that it was failing but that it was blocked by the calcium deposits. I could have avoided the whole mess and I wouldn't be stuck in a bed right now. Instead, my still somewhat active life ceased before I was 40.
What's past is past. Now I must get to the personal stuff going on right now, stuff I wish someone out there could help me with but that I know you can't. My primary caregivers are my aging parents, 73 and 68 respectively. My father just had a hip replacement and my mom suffers from mini-strokes and gets around on a walker. When they are gone, I'm shit out of luck. What little savings I have is fast disappearing as I pay for a caregiver 11 hours a day to help move me around, bathe me, etc. Basically, all nonmedical stuff, which they are not allowed to do. My mom has been doing that since February (with little training, though I'd urged my dad to show her how to do things when I came home also) when my father threw a fit and went insane because I refused to go into a hospital for in-patient physical therapy because he still refuses to accept that a) it does no good at this point b) that it's not like a hotel you just check into and since the doctor refused to sign off on it, the insurance wouldn't have approved it anyway and c) every time I go into a hospital, I get worse because they are essentially germ factories and M.S. gives me a weakened immune system, which makes me more susceptible to infection, which I've always caught some kind of when I've had a hospital stay.
He went off on a trip (this was pre-hip replacement) anyway. Shortly after, we lost our caregiver because he went back to college and his agency dropped us, saying none of their other workers would take our case which we learned was because of the way my father mistreated their staff and the caregiver. When the hip replacement came up, he wanted the in-patient thing, ignoring all that, and I hired a new caregiving agency (which we've learned he already has a bad reputation with as "being mean"). As soon as he was given the go-ahead to drive, he took off again to go to a family reunion to meet people he'd never met in his life and he kept extending his trip until the van needed to cart me around and the only vehicle we had broke down and he finally came back. After my mom, who will remember how he yells at us and mistreats us and then forget it an hour later got mad enough to hang up on him one night, I finally got her to talk to her brother to tell him the truth about our situation here. He got mad and called my dad who said he wouldn't yell anymore.
Unfortunately, I saw through him. He immediately set about doing all sorts of improvements to the house, which I knew he was doing as a pretext to putting it up for sale. Once, during one of our fights a long time ago, he admitted that he and my mom had been having marital problems since he'd had prostate cancer a decade ago — long before I ever got sick or lived with them. I understand his need for a break, but not for delusions or lying to people about my state (one of his friends called and yelled at me under the mistaken impression that I could get myself out of bed but simply chose not to do it). Never mind that one of the very first things we learned about M.S. was that stress exacerbates the symptoms.
Yesterday, he comes into my room and does what I've been waiting for and what I warned my mom would be coming. He asked if I'd be willing to do the in-patient physical therapy thing for two weeks so he and mom could go to his high school reunion. I told him once again it wouldn't be approved that it's not like a hotel and he suggested that we didn't have to tell them that's why. I suggested finding someone else to stay with me here. He said he was going and then was going to look around Indianapolis for places and when he got back, he was putting the house up for sale and we were moving. Never mind that he bought my mom a ticket for this reunion without asking and she didn't want to go because of the long car ride OR that she's told him repeatedly that she had no intention of moving back to Indianapolis because of the winters. There's also the matter that because of my still not fully healed wound, I'm not supposed to be sitting upright for more than two hours at a time, how am I supposed to travel long distances? Then again, he stopped caring a long time ago. My mother and I are nothing but burdens to him. It's terrible to experience the transformation of someone who has done so much for you into some you can't stand the sight of. I don't know if he just has a psychological problem or there is something physiological wrong with his brain.
My mom has even admitted in the past she's not sure she loves him anymore and yesterday that marrying him was a mistake, which I have to agree. It spawned me and outside of my online presence, this is not a life, especially when you add in doctors who don't listen or care when you are pointing things out to them or if you are in pain and ask for convenience sake that a prescription be able to be filled one day earlier to avoid being in pain for hours. Do they fear I'll become a drug addict? It's not like I can drive under the influence. I'm sure there are doctors out there who care about their patients more than their portfolios and do really good jobs. If you find him or her, please send me their name. The moment health care became a for-profit business in this country, it was over for everyone and it will never be fixed and we can't just blame evil health insurance companies for that.
There are the hospitals and doctors that purposely and fraudulently bill people. One nurse who worked on my wound told me of another patient, a 72-year-old woman, who was surprised to find on her hospital bill charges relating to her maternity and labor costs. I paid two bills to a hospital and the checks cleared. Two months later, I got the same two bills again along with a note saying they were being referred to a collection agency for nonpayment. In 2008 and 2009, we caught $24,000 and $22,000 in billing errors respectively. In all the talks of health care reform, no one brought up reforming hospitals in terms of quality or fraud. I'm lucky. I haven't had as many insurance problems as others, but they are far from the only villains. In fact, one case manager came to the rescue when one of the hospitals was trying to lie and kick me out on the streets when my house was unprepared. Unfortunately, like most things in this country, quality health care always will be something only available to the rich and the elected.
At the beginning of this month, I joined the ranks of Medicare. I'd hoped this would help pay for my caregiver, which is not covered by private insurance. Alas, no. Even though they say the cover those sorts of things for the homebound, Medicare goes by visits, not hours, regardless of the fact that my wound doctor wants me to be turned every two hours or so. Doctors' orders don't matter. Should have known. They seldom mattered when I was in the purposely understaffed hospitals either.
Anyway, back to my nonhealth home problems. This blog really is the only semblance of a life I have left and my dad wants to destroy it and remove from the place where I have a few friends who see me and doctors (he still doesn't get that the private insurance won't transfer). I've been lucky to have good contributors to help fill the gaps since I can't post every day myself. I'm sure I annoy them by trying to get them to turn stuff in early, but it's the M.S. that makes it necessary and I can't stay up as late as I used to so I can edit and code things. Some past contributors have just failed to deliver entirely and it just becomes another letdown in a life that now seems to be nothing but letdowns. Depression may make for great art but it's not ideal for criticism and analysis. Without the blog and the setup I have where I am now, I probably will cease to exist, figuratively and perhaps literally. What little modicum of happiness I have be damned.
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Ed, I'm so sorry to hear the nightmare you have been enduring. Of course, I wish you didn't have to endure any of this but that you have and haven't given up is a stunning testament to you.
I wish more people understood the problem with doctors and hospitals that is happening today. I recently found out that my sister, disabled and living with my parents for years now (she's 47), has been having progressively worse mini-seizures to her brain that her doctor never bothered to test for (the big ones are, of course, easily noticeable). Because of so much medical incompetence she has suffered brain damage and will gradually degrade into a comatose state over, we are told, the next two years. They're going to attempt brain surgery, but the chances are slim, so much damage has already been done.
I hope people read this, Ed, and spread the word of your story. This was very courageous of you. Stay strong.
I wish more people understood the problem with doctors and hospitals that is happening today. I recently found out that my sister, disabled and living with my parents for years now (she's 47), has been having progressively worse mini-seizures to her brain that her doctor never bothered to test for (the big ones are, of course, easily noticeable). Because of so much medical incompetence she has suffered brain damage and will gradually degrade into a comatose state over, we are told, the next two years. They're going to attempt brain surgery, but the chances are slim, so much damage has already been done.
I hope people read this, Ed, and spread the word of your story. This was very courageous of you. Stay strong.
Edward,
I've been aware of your struggle, but did not know it had progressed so far. I am so sorry.
Friends of mine have warned of the importance of buying long-term care insurance when it isn't too expensive, as they care for friends in need. Our health care system is entirely inadequate; I have ridiculous billing stories from when I broke my foot.
We all have them.
Let me remind you, please, of the hours of pleasure I've had reading your erudite blog. I hope you can continue to derive pleasure from keeping it going.
All my best as you persevere onward.
ANNE
I've been aware of your struggle, but did not know it had progressed so far. I am so sorry.
Friends of mine have warned of the importance of buying long-term care insurance when it isn't too expensive, as they care for friends in need. Our health care system is entirely inadequate; I have ridiculous billing stories from when I broke my foot.
We all have them.
Let me remind you, please, of the hours of pleasure I've had reading your erudite blog. I hope you can continue to derive pleasure from keeping it going.
All my best as you persevere onward.
ANNE
Edward,
My heart goes out to you. I know how hard it is for such a private person to share such a personal story, but you did so with your customary eloquence, leaving your readers to ask, how can we help?
Let us know, publically or privately.
Good thoughts, good thoughts, good thoughts from me to you,
My heart goes out to you. I know how hard it is for such a private person to share such a personal story, but you did so with your customary eloquence, leaving your readers to ask, how can we help?
Let us know, publically or privately.
Good thoughts, good thoughts, good thoughts from me to you,
# posted by 
: 8:27 AM
: 8:27 AM
Ed,
Thank you for sharing your story. I've always been a fan of your blog and its contributors, always looking forward to your own posts most of all. I completely understand what it's like not wanting to sharing personal info on one's blog, because a film blog should be about all things film. When my father passed away this January, I was torn. Having read another film blogger's post about the loss of his father made me wonder if I should dare let strangers in about my loss. All they can do is offer condolences. Of course, on average, our readers are many times over the handful of friends we have, and being from such a diverse range of backgrounds and places, you might just learn a few things when you let them in. In my case I never did, just putting a comment on the front page to the effect of 'someone dear to me has passed, which is why I haven't been posting'. Reading your story, though, helps. After reading this, it's nice to have context about where you've been and why. It's nice to see that you're willing to purge a bit of poisonous vitriol to those who know your online self and it's brave to share such personal things about your condition and your family. It's appropriate, and thank you.
Here in Canada, (I'm in Ottawa) we complain about wait times and rushed service and overstaffed doctors - and not being able to find a family physician because ours are going to the States, but it's much harder to complain about neglectful corruption and the greed of a doctor or the attrocious costs of care. I want to express my condolences for your health, for your situation, for the loss of your legs, and for your father's denial of your condition.
As for the blog that makes you so happy, if you have more contributors, would that make it more enjoyable? if so, put the word out. I don't know what your criterion are, but I'm sure many people would be proud to publish on your site, myself included.
Keep on keepin on, and thanks again.
Thank you for sharing your story. I've always been a fan of your blog and its contributors, always looking forward to your own posts most of all. I completely understand what it's like not wanting to sharing personal info on one's blog, because a film blog should be about all things film. When my father passed away this January, I was torn. Having read another film blogger's post about the loss of his father made me wonder if I should dare let strangers in about my loss. All they can do is offer condolences. Of course, on average, our readers are many times over the handful of friends we have, and being from such a diverse range of backgrounds and places, you might just learn a few things when you let them in. In my case I never did, just putting a comment on the front page to the effect of 'someone dear to me has passed, which is why I haven't been posting'. Reading your story, though, helps. After reading this, it's nice to have context about where you've been and why. It's nice to see that you're willing to purge a bit of poisonous vitriol to those who know your online self and it's brave to share such personal things about your condition and your family. It's appropriate, and thank you.
Here in Canada, (I'm in Ottawa) we complain about wait times and rushed service and overstaffed doctors - and not being able to find a family physician because ours are going to the States, but it's much harder to complain about neglectful corruption and the greed of a doctor or the attrocious costs of care. I want to express my condolences for your health, for your situation, for the loss of your legs, and for your father's denial of your condition.
As for the blog that makes you so happy, if you have more contributors, would that make it more enjoyable? if so, put the word out. I don't know what your criterion are, but I'm sure many people would be proud to publish on your site, myself included.
Keep on keepin on, and thanks again.
Ditto what everyone said above. It is a shame, at your age, your best work still to come. I'd like to ask what state you live in and if there is a social worker assigned?
# posted by : 2:03 PM
: 2:03 PM
Ed, this blog is important not only to you but to all of us who read it. (I wish I'd been able to meet you back at that "Nashville" screening at the Walter Reade -- years before we would encounter each other on the web!)
I'm very sorry, and angry, about what's happening in your family. You may be right about your father's mental state; is there anyone to whom you can express your concerns? Sounds like he's in no condition to be making decisions about you or your mother and maybe there are some legal measures that can be taken to put a stop to that.
My thoughts are with you...
I'm very sorry, and angry, about what's happening in your family. You may be right about your father's mental state; is there anyone to whom you can express your concerns? Sounds like he's in no condition to be making decisions about you or your mother and maybe there are some legal measures that can be taken to put a stop to that.
My thoughts are with you...
# posted by : 2:08 PM
: 2:08 PM
Thanks to everyone for their kind thoughts. I've broken my usual rule and allowed an anonymous comment because it reminded me of a story I forgot to include. I've talked to social workers before. One of them (and other people such as nurses and doctors when I point out things to them that they don't expect patients to know or notice) actually said to me, "You are too smart for your own good." As if there could be such a thing. Am I supposed to check in somewhere for a lobotomy? Are there stupid pills I can start taking? It is sort of a symptom of the resistance to allowing the teaching of critical thinking. We've tried before to get my dad to go to a family counselor but in his delusional world when it was brought up again, he actually claimed that I refused to go. His world sees things that never happened. Early on, when I did do some physical therapy, which only worked on my arms and upper body, he claimed (and told others) that he saw me standing up. Another problem with our health care system is that it only wants to provide help if you are destitute. Since we live together, it counts all our assets and we aren't poor enough to qualify for the help we need nor are we wealthy enough to afford the help we need. Once again, the middle class in the U.S. gets crushed. Part of the plan to get rid of them entirely.
Ed, as I write this, I'm sitting in my mother's hospital room and realizing how lucky we are. Aside from simply having better luck healthwise and in other ways, we are in Kaiser, while by no means perfect, is at least non-profit. If I could do one thing, short of starting an English or Canadian style system in the U.S., it would be to take the profit out of healthcare. It clearly just doesn't work.
I would also like to chime in with the very smart Jim Emerson and suggest that you look into some kind of legal means of asserting your rights in this situation. Some kind of pro-bono legal services might be available to you.
I would also like to chime in with the very smart Jim Emerson and suggest that you look into some kind of legal means of asserting your rights in this situation. Some kind of pro-bono legal services might be available to you.
Nonprofit and Not-for-profit are often misnomer. The hospital that tried to charge me twice for the same thing and that tried to bill the 72 year old woman for her labor costs was a not-for-profit (a religious affiliated not-for-profit no less). If you are familiar with blue pads, at home we get a package of 150 for $50. The same not-for-profit hospital charges $27 for 3.
Well, Kaiser is certainly no charity either, but it seems like, overall, they're strongly dis-incentivized to do unnecessary procedures and I can't remember ever hearing of a single horror stories about denying care like you hear about nearly all the other big outfits out here. My hunch was that the a big part of the problem is that publicly held for profits have to report certain levels to their stockholders and not-for-profits, at least, don't do that. Still, that doesn't mean the top people can't give themselves excessive salaries, etc.
Ed, my name is Ben Livant. I am the blog slave in residence at Cinemania, published by Dan Jardine. You may recall that about a year ago the three of us exchanged thoughts on Werner Herzog's Even Dwarves Started Small. On the other hand, if you don't recall, this would be completely understandable.
I do not want to add insult to your injury by pretending that I know you and care about you more than I do. Still, I am writing you this message to show you that you are in contact with more people than you might think and I second all the supportive comments you have already received.
As you are self-conscious about departing from your public voice to speak personally, I hope you will take encouragement from me mentioning that "the personal is political," as the radicals used to say in the 60s. This is to point out that it benefits the system and those who manage and profit from it to keep people isolated, to compel individuals to cope privately rather than struggle collectively for change. So, speaking out as you are now doing is not just medically therapeutic for you - it is politically essential for all of us.
If I am hearing you properly, you are fighting for you life. The least I can do is tell you that you do not need to apologize for doing so. If "Edward Copeland on Film" has to undergo a title revision to better enable you to address critical issues in the real world far beyond the entertainment of the reel world, so be it.
You are not alone. There are many people grappling with serious medical problems made worse by capitalist health carelessness. They will be helped by hearing from you and you will be helped by hearing from them in return.
If it turns out a few of these people also care passionately about cinema as you do, all the better. Although I have to admit, if they turn out in particular to be big fans of Even Dwarves Started Small, (as I am, God help me), you may not want to get too close to them. Just trying to give you a smile now. In solidarity...
Then - Ben
I do not want to add insult to your injury by pretending that I know you and care about you more than I do. Still, I am writing you this message to show you that you are in contact with more people than you might think and I second all the supportive comments you have already received.
As you are self-conscious about departing from your public voice to speak personally, I hope you will take encouragement from me mentioning that "the personal is political," as the radicals used to say in the 60s. This is to point out that it benefits the system and those who manage and profit from it to keep people isolated, to compel individuals to cope privately rather than struggle collectively for change. So, speaking out as you are now doing is not just medically therapeutic for you - it is politically essential for all of us.
If I am hearing you properly, you are fighting for you life. The least I can do is tell you that you do not need to apologize for doing so. If "Edward Copeland on Film" has to undergo a title revision to better enable you to address critical issues in the real world far beyond the entertainment of the reel world, so be it.
You are not alone. There are many people grappling with serious medical problems made worse by capitalist health carelessness. They will be helped by hearing from you and you will be helped by hearing from them in return.
If it turns out a few of these people also care passionately about cinema as you do, all the better. Although I have to admit, if they turn out in particular to be big fans of Even Dwarves Started Small, (as I am, God help me), you may not want to get too close to them. Just trying to give you a smile now. In solidarity...
Then - Ben
# posted by : 12:22 PM
: 12:22 PM
Here I am reading this in Indianapolis. My wife has had terrible health problems that have left us financially strapped and, at times, absolutely miserable for eight years. She turned 34 yesterday. My parents have passed away and her parents do not have the resources to help financially. My heart really goes out to you because we're in a similar boat.
Dorkismo, I wish there were a way for you out there to help, but I don't think there really is. Just knowing that there are people out there who don't even know me except by my words yet still care about me is good enough. Thanks to you and everyone else who has offered support.
This is such a god-damned horrible shame and a sadness, and nobody deserves it. Anyone who reads this is going to want to push a button and fix it, and there's no button.
You write well and powerfully and it's a big loud yell. Sometimes that's all we've got.
I wish you strength and luck.
You write well and powerfully and it's a big loud yell. Sometimes that's all we've got.
I wish you strength and luck.
# posted by : 7:49 PM
: 7:49 PM
Hey Ed, I also went through a depression a year ago, it wasn't the happiest of times & -at times- I thought I wouldn't pull through but what can't break you makes you stronger. I know you can pull through, I asked for help & was rewarded by some of the most unlikeliest of people.
you've been nothing but an inspiration to me and you are one of the reasons why I got into the film blogosphere in the first place. You WILL get out of this a stronger person.
your friend,
Jordan Ruimy
you've been nothing but an inspiration to me and you are one of the reasons why I got into the film blogosphere in the first place. You WILL get out of this a stronger person.
your friend,
Jordan Ruimy
Thank you for sharing your personal story. You are obviously fighting tremendous institutional and domestic forces. Reading this made me feel angry, sad, and depressed. I'm in my 40's and also have MS, but perhaps not ironically find it's the least of my troubles. I really don't have any words of wisdom or advice beyond what others have said, but I wanted to leave this comment to let you know I'm rooting for you. Please hang in there - and try to keep your darker thoughts at bay if at all possible. You're obviously a very strong person. You are contributing meaning to my world, and I imagine many others. Your blog presence offers me hope and a sublime retreat from the ravaging plague of greedy, laziness, and incompetence that threaten the fabric of daily life. Putting your personal struggles out there in no way diminishes your blog - so please continue to share if and when you feel like it. Thank you Ed.
- Michael P, West Los Angeles
- Michael P, West Los Angeles
# posted by : 8:11 PM
: 8:11 PM
Just to let you know, Roger Ebert posted a link to your blog from his Facebook page, so I'm hoping that you'll be getting more comments from people in the coming minutes and hours. At the very least, you'll be getting a lot more readers.
I truly hope that things get better for you, or--at least--that you continue to persevere. And, if you need a laugh: http://www.youtube.com/watch?v=xy5JwYOlgvY
Also, yes, helping people for profit sets up an awful conflict of interest, with too many people coming down on the side of money. France realized that long ago, which is why their health care system breaks even.
I truly hope that things get better for you, or--at least--that you continue to persevere. And, if you need a laugh: http://www.youtube.com/watch?v=xy5JwYOlgvY
Also, yes, helping people for profit sets up an awful conflict of interest, with too many people coming down on the side of money. France realized that long ago, which is why their health care system breaks even.
# posted by : 8:14 PM
: 8:14 PM
I am very sorry to read this.
Thank you for sharing this.
It makes me sad and angry to read this.
We're here to support you.
Thank you for sharing this.
It makes me sad and angry to read this.
We're here to support you.
Edward,
I hope for only the best. I hope this blog stays together. I hope you continue to be connected to us all. It harrows me deeply when you say that you would "cease to exist" without this blog. I know exactly what you mean. Have you told that to your father, in those words? Because maybe that would touch his soul in the way that it did mine.
All the best,
Nick Duval
I hope for only the best. I hope this blog stays together. I hope you continue to be connected to us all. It harrows me deeply when you say that you would "cease to exist" without this blog. I know exactly what you mean. Have you told that to your father, in those words? Because maybe that would touch his soul in the way that it did mine.
All the best,
Nick Duval
I don't know what to say other than I'm so sorry you have to go through this. It's bad enough to have health problems, but to have the added uncertainty of your caregivers not only being good to you, but also threatening to yank the whole thing out from under you... It's a horrible situation.
I use a wheelchair myself, live in Toronto and up here we have something called supportive living services or some such. It means that I live in an accessible apartment in a "regular" building and there are a number of other people in the same situation. there's an agency connected to the building that provides attendant care 24 hours a day to me and the others. Is there something like that where you live? Are you connected to agencies/organizations that can help you access services for people with disabilities? Are there any alternatives to grown people being dependent on aging parents?
I use a wheelchair myself, live in Toronto and up here we have something called supportive living services or some such. It means that I live in an accessible apartment in a "regular" building and there are a number of other people in the same situation. there's an agency connected to the building that provides attendant care 24 hours a day to me and the others. Is there something like that where you live? Are you connected to agencies/organizations that can help you access services for people with disabilities? Are there any alternatives to grown people being dependent on aging parents?
Edward, I am so angry to hear of the injustices you have been subjected to - physically, ethically, emotionally - by people who are suppose to be in your corner, on YOUR side as you battle this horrible disease. There is a sea of voices on the net on your side, is there a way to turn that into something substantial for your quality of life in reality? Your previous MD's conduct sounds like it could be professional misconduct. If there is any community legal clinic or probono legal service, it may be worth inquiring if they can be of some help. Also, consider filing a complaint with the professional physicians regulatory body in your area, they are obligated to at least look into it, and it's good to document facts for potential future actions.
Again, if there's any way people can help through the net, please say the word.
sincerely, Grace
Again, if there's any way people can help through the net, please say the word.
sincerely, Grace
# posted by : 12:28 AM
: 12:28 AM
When you're feeling terrible and needing things to be easier, they get more cumbersome as you try to work your way through or around the medical industrial complex. I've been an RN for more than 45 years. I've seen it. I'm also a rheumatoid arthritis patient and know some of the frustration you've experienced, but not to the depth you've faced.
Medicare will cover an alternating pressure mattress which can provide pressure relief to prevent wounds. Also, if you are so inclined, I know several people who have MS who have been aggressive taking cannabis tincture and good nutrition and have turned their MS around, definitely in remission. A new medication has just been released in England, Spain, and Canada - the first made directly from the cannabis plant. Researchers say that it is the most powerful antiinflammatory that is extremely useful in MS, RA, and other autoimmune disorders. Sativex. It is not available in the US yet. However, the principle that cannabis is a useful treatment in MS is valid.
Best wishes.
Medicare will cover an alternating pressure mattress which can provide pressure relief to prevent wounds. Also, if you are so inclined, I know several people who have MS who have been aggressive taking cannabis tincture and good nutrition and have turned their MS around, definitely in remission. A new medication has just been released in England, Spain, and Canada - the first made directly from the cannabis plant. Researchers say that it is the most powerful antiinflammatory that is extremely useful in MS, RA, and other autoimmune disorders. Sativex. It is not available in the US yet. However, the principle that cannabis is a useful treatment in MS is valid.
Best wishes.
Edward, when you are ready, you fight. You fight to live, you fight to educate, you fight to entertain and you fight to make it better, if not for yourself, do it for the people who will follow. You blaze the trail. You, your life, your story and your legacy, are not in vain.
# posted by : 12:48 AM
: 12:48 AM
First of all, my thoughts and prayers are with you and your mother.
I don't know you beyond this blog, and I have a tendency to dole out unwanted advice so I'll do my best not to stick my nose in where it doesn't belong. However, another commenter said that you're fighting for your life, and that's exactly right. So don't pull any punches. If you need to ask friends online and IRL for help, advice, whatever, reach out. If someone says "let me know if I can help" ask them to research and make calls and anything else you can think of. Money helps beat the system but knowledge can make for good cheat codes.
And just as a wish, I hope you can get away from your father. My father is semi-delusional and toxic as well, and it's hard to break out of depression in that environment, let alone enjoy life.
I don't know you beyond this blog, and I have a tendency to dole out unwanted advice so I'll do my best not to stick my nose in where it doesn't belong. However, another commenter said that you're fighting for your life, and that's exactly right. So don't pull any punches. If you need to ask friends online and IRL for help, advice, whatever, reach out. If someone says "let me know if I can help" ask them to research and make calls and anything else you can think of. Money helps beat the system but knowledge can make for good cheat codes.
And just as a wish, I hope you can get away from your father. My father is semi-delusional and toxic as well, and it's hard to break out of depression in that environment, let alone enjoy life.
Gosh, sorry to hear all this sad news, sir. But as the son of a urologist, I hope you aren't saying this Greedy Doctor who screwed you was A Jewish bloke, that would be very bad form, Ed. Not all doctors are greedy! Your money money money mantra is a bit mis-directed, Ed, but you have my sympathy as a suffering man. Still, antisemitism has no place here. Ouch. It always happens though. Hitler also said a Jewish doctor killed his mother. See? Is that what we are all about, Ed?
-- David Gillenhall, NYC
-- David Gillenhall, NYC
# posted by : 2:44 AM
: 2:44 AM
Dear Edward,
I read this blog entry through a link from an EbertChicago Twitter message. It was most alarming to me because I do feel that your situation is immediately life threatening. People who are invested in your survival need to form a circle of support and brainstorm options, make connections with advocacy organizations to get supports in place, and make sure you are not left to the arbitrary decisions of bureaucrats or family, even in the best of circumstances. You require advocates and hell-raisers to save your life. Some coordinated and ongoing effort is necessary to get the supports started that are required by your disability and circumstances. Those who are not familiar with life and death disability issues may not realize that they can have a significant effect on your options and survival if they organize themselves right now and dig in to find what options may be available to you through their efforts. You deserve some heroic or at least persistent (stubborn) efforts on your behalf. Your internet community can accomplish more than they know by committing themselves to following up every possible option available to you.
Pam W
SE of Seattle
http://www.bellaonline.com/articles/art65756.asp
I read this blog entry through a link from an EbertChicago Twitter message. It was most alarming to me because I do feel that your situation is immediately life threatening. People who are invested in your survival need to form a circle of support and brainstorm options, make connections with advocacy organizations to get supports in place, and make sure you are not left to the arbitrary decisions of bureaucrats or family, even in the best of circumstances. You require advocates and hell-raisers to save your life. Some coordinated and ongoing effort is necessary to get the supports started that are required by your disability and circumstances. Those who are not familiar with life and death disability issues may not realize that they can have a significant effect on your options and survival if they organize themselves right now and dig in to find what options may be available to you through their efforts. You deserve some heroic or at least persistent (stubborn) efforts on your behalf. Your internet community can accomplish more than they know by committing themselves to following up every possible option available to you.
Pam W
SE of Seattle
http://www.bellaonline.com/articles/art65756.asp
# posted by : 5:14 AM
: 5:14 AM
Not sure where anyone would get the idea that there is something anti-Semitic going on in what I said. The urologist in question is (or at least pretends to be) a Christian. In fact, before the botched surgery, he led me and my parents in a prayer to Jesus. Not that he bothered to ask us what our religion is or if we even had one. For all he knew, we could have been Jewish.
I followed the link from Roger Ebert's tweet. I am sickened by what you are going through. And I am leaving this anonymously because of fear of retribution for telling you what happened to me.
I was taken in an ambulance to a hospital from my home. I have Medicare and Medicaid. After not receiving any treatment, I was locked in the waiting room. About fifteen minutes later, I was told I would be arrested for loitering if I did not leave. It was night time and I had no money and no shoes on and my house was at least fifteen miles away. Also, I did not have my prescription glasses with me and I could not have seen to walk anywhere. So I was arrested and then charged with "Criminal Trespassing". This was in Texas.
I was taken in an ambulance to a hospital from my home. I have Medicare and Medicaid. After not receiving any treatment, I was locked in the waiting room. About fifteen minutes later, I was told I would be arrested for loitering if I did not leave. It was night time and I had no money and no shoes on and my house was at least fifteen miles away. Also, I did not have my prescription glasses with me and I could not have seen to walk anywhere. So I was arrested and then charged with "Criminal Trespassing". This was in Texas.
# posted by : 6:16 AM
: 6:16 AM
Edward, I have been trying for days to compose a reply to this and keep giving up, because nothing seems adequate. I have followed this blog for most of the years I've been blogging myself, and always had such admiraton for the wit, energy and precision of your writing and your strong clear insights. Your Oscar roundups and the huge Foreign Film project were monuments of organization and dedication. To know that all this was produced during such incredibly difficult trials boggles my mind. You have my deepest sympathy as you struggle with health and personal circumstances made so much worse by a criminally neglected safety net. But much more than that, you have my respect. You are quite a man. I am glad we continue to have your voice.
Hi Edward, glad you cleared that up. Good to know I was wrong. I wanted to be wrong, I was. But Edward, my dad, may he rest in peace, 1915-2005, was the nicest least money hungry urologist you could have ever met, and while some docs are ba...d, many are good. I had a heart attack last November, my doctor in Taiwan saved my life, I am grateful, and i did not even have med insurance, i had to pay cash after the op, US$6000. When you say that docs of all faiths are equally money hungry, that makes me, as the son of a good doctor, very sad. Ameica is better than that. Look up. See the good in people, too. But i do understand, you might have come into contact with a bad apple, sure. My apologies for speaking out of turn, and again, glad i was wrong. Love your blog, love your movie reviews. -- Danny (1949 - 2032) ...i am thinking positive but who knows, my days are numbered, i got a stent and could go at any time.....still, it's been a great ride, i am ready now!
My best wishes to you, sir, and thanks for the note. I appreciate. Hope i make some sense too. That's all I am about, trying to make sense of this tale told by an idiot full of sound and fury and signifying, nada.....SIGH
My best wishes to you, sir, and thanks for the note. I appreciate. Hope i make some sense too. That's all I am about, trying to make sense of this tale told by an idiot full of sound and fury and signifying, nada.....SIGH
Oh, Edward. I've read your blog for ages and I had no idea you were going through so much. I'm so sorry all of this happened to you.
I wish I knew some way we could help. All I can say is that clearly you need to get away from your father. By chasing away your caregivers and with his erratic behavior he is endangering your life. It is as clear and stark as that. In addition let me echo the other commenters in saying that legal help might be the way to go, in order to get the resources you need.
Don't be ashamed to put up a Paypal donation box. People who have enjoyed your writing for ages would be happy to contribute. Call it a tip jar if that would help.
I wish I knew some way we could help. All I can say is that clearly you need to get away from your father. By chasing away your caregivers and with his erratic behavior he is endangering your life. It is as clear and stark as that. In addition let me echo the other commenters in saying that legal help might be the way to go, in order to get the resources you need.
Don't be ashamed to put up a Paypal donation box. People who have enjoyed your writing for ages would be happy to contribute. Call it a tip jar if that would help.
# posted by : 10:40 AM
: 10:40 AM
Edward, I can only echo what the Siren and others have said: that everything I want to say seems insufficient to what needs to be said, and what needs to be DONE, in response to your situation. This post crystallizes the gift you have brought to your film writing, of making your readers feel, think, and self-reflect in equal measure. You have a very clear and mobilizing voice even when you are, obviously and justifiably, despondent. I hope that writing this out had at least some of the purgative effect that you were hoping it might, and that the ideas that are already floating here - pro-bono legal routes, donations from online friends and supporters, can really accomplish something important and far-reaching on your behalf, despite the scale of the circumstances you're describing.
I'm sure you must be reading some of our suggestions and thinking, "Yes, I've thought of that, too...," and I am sure there are good reasons why they haven't worked so far. But they still could work, and being brave and lucid and angry enough to share this information with such a wide group of people seems like a huge step in a promising direction. I really do wish the best for you, and I hope it helps to know how many admirers and supporters you've got.
I'm sure you must be reading some of our suggestions and thinking, "Yes, I've thought of that, too...," and I am sure there are good reasons why they haven't worked so far. But they still could work, and being brave and lucid and angry enough to share this information with such a wide group of people seems like a huge step in a promising direction. I really do wish the best for you, and I hope it helps to know how many admirers and supporters you've got.
Dear Edward,
You are right- our healthcare system is broken. I have been an LPN for 27 years. I have worked for the VA which provides good care for the last 7. This year I went back to school and got my RN. The conditions in the for profit hospital were atrocious. I almost quit the program a few times because I wanted no part of the care going on there. People were routinely discharged way before they were ready! We do need an overhaul of our health care system!
I have seen small rural hospitals provide good care- however, they do not usually have the hi-tech equipment. People still end up coming to the larger hospitals. What if small city hospitals supported by local taxes were set up that were free? What if assisted living and nursing homes were set up in that way as well?
One of my favorite patients has MS- it is common in veterans. At this point you need some respite care. From there you can plan what to do and where to go. Your disability may have qualified you for some through DSHS.
If you were a veteran I would know exactly where to send you for help! I don't know the public sector as well! Hang in there! Keep trying!
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You are right- our healthcare system is broken. I have been an LPN for 27 years. I have worked for the VA which provides good care for the last 7. This year I went back to school and got my RN. The conditions in the for profit hospital were atrocious. I almost quit the program a few times because I wanted no part of the care going on there. People were routinely discharged way before they were ready! We do need an overhaul of our health care system!
I have seen small rural hospitals provide good care- however, they do not usually have the hi-tech equipment. People still end up coming to the larger hospitals. What if small city hospitals supported by local taxes were set up that were free? What if assisted living and nursing homes were set up in that way as well?
One of my favorite patients has MS- it is common in veterans. At this point you need some respite care. From there you can plan what to do and where to go. Your disability may have qualified you for some through DSHS.
If you were a veteran I would know exactly where to send you for help! I don't know the public sector as well! Hang in there! Keep trying!
# posted by : 1:55 PM
: 1:55 PM << Home
