Archive for the ‘Feelings’ Category
I have now lived through another presidential election. It has had its moments of glory, such as being able to vote for the first female presidential candidate of a major party It has had its moments of blindness, like a ton of millennials and others throwing away their votes. It has had its moments of hope, such as listening to Michelle and Barack Obama speak about the future. And it had its moments of shame, as various states were called in favor of a candidate who has shown himself to be one of the most flawed people ever to run for the office.
It is now over. Donald Trump has been elected. Hillary Clinton has conceded. Trump now claims that he will unify the country. I don’t see how he can do so, given the things he has said about so many different groups of people. I admit to some baggage here. As a native New Yorker, my opinion of our new President is slightly lower than my opinion of the late Robert Moses.
I do know that every new President has a learning curve, during which he or she finds out that the powers of the office are not totally unlimited, and that one has to negotiate with others. I also know that, no matter how good or bad Trump turns out to be, if he does not learn, he is likely to be a one-term president.
I think the next four years will be harder for many of us than we were hoping. I expect that important things will be destroyed by the new President, the still Republican Congress, and a split Supreme Court. David Gerrold has an excellent post on Facebook about what we are likely to lose and why.
What many people are refusing to understand though is where and shy this happened. They did not understand how many Americans are frustrated that neither party seemed to be listening to their concerns. They did not learn the lesson of Weimar Germany, where people who were frustrated allowed an evil man to come to power.
For the next four years, we will have to deal with the results of the willful ignoring of the frustrations and issues of people who feel they have lost their way of life. As my mother used to say, “Those who don’t learn from history are doomed to repeat it.”
Am I scared for myself? Yes, some. I am 64, Jewish, disabled, and poor. Will I survive this president? Most likely. More than afraid, though, I am sad that Americans seem to choose to not learn from history, Heck, I’m sad that many Americans don’t even know the history of this country. I’m disappointed that after years of fighting for progress, and toward the ideals of our Founding Fathers, many people have chosen a leader who seems hellbent on tearing down that progress.
I am not screaming for armed revolt. I am not planning on running away. I am planning on surviving the next four years, and then working to ensure that we elect a President whose goals and values are closer to mine. I will also try to remember that this election was largely a revolt by the citizens who felt that our leaders were not listening to their needs and issues, and that even as illustrious a Founding Father as Thomas Jefferson recommended revolting when the country’s leaders were not listening to the people they were elected to serve.
I’m not sure any of this is making sense. It’s 4:29 a.m., and I am mostly trying to frame my thoughts as to how to deal with the bitter-to-me loss of Hillary Clinton and the Democratic party.
May whatever Deity you believe in sustain you through the next four years.
Posted November 4, 2016on:
Replying to a comment in my last post got me thinking about the music that has shaped my life.
As anyone who knows me for more than ten minutes knows, one of the two life regrets I have is that I can barely carry a tune on my own. However, I have been a lifelong music fan. (I think the first song I remember hearing on the radio was “Venus,” sung by Frankie Avalon – yes, I AM that old; live with it.)
I was hooked. Not just on the song, but on the way the words and melody fit with each other, the way the sounds came out, the harmonies…. I still am hooked on music all these years later.
As I grew older, I found that the songs I loved had certain characteristics:
- Often, the singer had an unusual voice
- There were complexities in the arrangements – harmonies and counterpoints and descants
- It moved me just by its magnificence
- It had words that rang true to some part of my life
- It had something in it that helped me cope somehow with some part of my life or some issue I was struggling with
Fortunately, my parents also liked music – chores were done to the Texaco Sunday Opera in the background; Dad liked pop music, and was often the one staying up late with me to watch the late night music shows. My Grandma was a fan of The Monkees (long story – ask me elsewhere about that). Mom loved musicals and show tunes and musical comedy such as Danny Kaye, and Allan Sherman. The Beatles hit the US when I was in 5th grade, and their excellent lyrics hooked me even more.
When I got old enough, I started hanging out in Greenwich Village – an excellent place for someone who loved music. There, I fell in love with Richie Havens, Raun MacKinnon, Laura Nyro, David Bromberg, Weeden & Finkle (later Finkle, Weeden and Faye), Christine Lavin, a cappella music, Buzzy Linhart, Eric Frandsen, and so many others.
Then prog rock came along. It had all the complexities I loved, plus Chris Squire – a bassist who often played top line leads with his bass. It also has Phil Colllins and Carl Palmer (I love a good drummer – always have) And brought me more to listen to jazz and classical music.
My taste in music has kept expanding as I’ve grown. To this day, I still hear new stuff and fall in love with it. My friend Gundo can tell you about the first time he showed me the video for “Wheels” by the Foo Fighters. I pretty much fell off his couch when it was done. And Marc can tell you about the time at the Nassau Community College Folk Festival I first heard Richie Havens do an a cappella cover of Pink Floyd’s “On the Turning Away.” I was literally left speechless. Megan could tell you (if she was still alive) about the first time I heard Tom Paxton perform “The Last Thing on My Mind.” Sue can tell you about how watching the 25th anniversary PBS showing of “Les Miz” not only left me speechless, but gave me two new singer obsessions: Alfie Boe and Norm Lewis.
That said, there are songs that have shaped my life. Sue and Marc have seen the looseleaf where I’d been copying lyrics since the first time I saw “Fiddler on the Roof.”
There are all sorts of sources for those songs, so I will list here some of them, in the hope that you may know and feel the same about them.
- Follow – Richie Havens
- On the Turning Away – Richie Havens a capella version
- You’ve Got to Be Carefully Taught – from South Pacific
- If I Loved You – from Carousel
- No Time At All – from Pippin
- If I Never Spend a Morning Without You – Andy M. Stewart and Manus Lunney
- Is A Puzzlement – from The King & I
- Corner of the Sky – from Pippin
- The finale of the Firebird Suite – Igor Stravinsky
- Video – india.arie
- I’m Still Here – Stepehn Sondheim (as performed by Elaine Stritch)
- Ritual (Nous Sommes du Soleil) – by Yes
- Run with the Fox – Chris Squire
- Too many Paul Simon songs to single any out
- What Makes you DIfferent (Makes You Beautiful) – Backstreet Boys
- Too many Christine Lavin songs to single one out
- Circle of Fifths – Raun MacKinnon
- The Last thing on My Mind – Tom Paxton
- Most songs by Allan Sherman
- Most songs by Tom Lehrer
- Waving Flag by K’naan
- Take me to the Alley by Gregory Porter
- Bring Him Home – from Les Miz
- Way too many other songs to enumerate
So, these are some of the songs that have shaped me in one way or another, and why music is so important to me.
It’s been a while but I’m still here. I mostly haven’t written because I figured no one needed to hear me whine while I tried to sort out what was left of my life after the surgery. It hasn’t been an easy road. I tried the cardiac rehab and it was working until the therapist decided that fact shaming me was more important than listening. I was able to do the cardio work just fine but she refused to acknowledge that the problems I was having on the treadmill were due to my sciatica. I tried arguing with her for about a month, but eventually it got more upsetting and aggravating to go then to not go. Unfortunately, all that really happened from it was that I ended up having to fight depression on top of everything else. It also meant I lost ground on the walking progress as my sciatica was just getting worse and worse. It also meant that I lost ground on my freelancing, because I was spending a lot of time sleeping because I was so depressed.
Anyway, that being said, it’s time to get over myself and get my tuchis back in gear. Last week, for the first time, I was able to turn in a reasonable amount of work on all my projects. I was also able to get a little of the organizational stuff I really needed to do accomplished. I’m still having trouble standing and walking, but once it gets warmer I intend to remedy that.
Right now my brain is not up to knitting so I picked up a couple of cross stitch projects to work on. I’m just waiting for the thread and some embroidery hoops to arrive.
In other news, the roomie’s friend, Pat, passed away in October. As a result, we now have two more cats. While they are very nice cats, we really didn’t need to more cat. On the other hand, I now have a cat that actually likes me. Archie is a 19-pound, orange, diabetic Maine Coon mix with the personality of an adorable puppy. He likes nothing better than to lying on my bed and get skritched. He gets along with the other three cats nicely. Annie, known as “The Vonce,” is another story. While she and Archie get along, she and Fat Louie tolerate each other, and she and Kitt do not get along at all.
I finally was able to get my Disability approved, so I am now getting enough money to live on. I’ve paid back a portion of my student loans, and have given a couple of folks I owed money to the money. I am grateful my friends were there to help me out, and more than grateful that I was able to make a dent in what I owe.
Thanks to an old friend, Moshe Feder, I found an interesting app for my tablet. it’s called “Waterlogue” and it lets you turn your photographs into watercolors. This is a self-portrait I made the other day. I quite like the program, and expect to have a lot of fun with it. I’ve done a couple of pics of the cats with it, too, but they can get posted some other time. I’ve also been playing with an app called “Paper,” which lets you draw in a “notebook” on your tablet with various “brushes,” as well as a stylus that you can purchase separately. I’m not real good at that yet, but hopefully 2015 will bring me lots of opportunities to get better at it.
One thing I really missed this year was making Christmas dinner for my friends who don’t have where to go. I was not up for cooking, though, and I was not gonna ask the roomie to do it all, so this year it had to fall by the wayside. Hopefully, this will be the only year that I have to drop that little ritual.
So. I’m hoping to get back to posting three days a week again in 2015. I’m also hoping to get back to getting rid of all the weight I gained while being ill. I know myself well enough to know I can’t force myself to get back to doing the right things. I am hoping that the way I’ve felt this week means I am pulling out of the depression, so I can start making progress because, frankly, I want my life back.
NYC, including Brooklyn, is caught in this Polar Vortex that the weather forecasters are talking about. What this means in real life is that we are in one of the worst cold snaps in a while. For folks like me, with heart issues, this means we should stay inside as much as humanly possible, lest we add stress to our already compromised systems. F), or once, I am actually taking their cautions seriously. Being 61, and wanting to make it to at least 62, I figure caution and treating myself kindly are pretty important right now.
I did go out – briefly – on Monday. Had an appointment with my internist. While I won’t mention names online, if any of you in Brooklyn are looking for a great practice (two really great doctors, and a third one who is more than competent, but a bit on the arrogant side), catch me privately and I will give you the info. And believe, me I don’t say “great” for nothing; my doctor has saved my life twice, my ex’s life once, and my roommate’s life once.
Anyway, I discussed the situation with my internist, and he agrees with me that a pacemaker would be totally uncalled for in this case. He also let me know that he plans to speak to my cardiologist and make sure that I get a referral to a surgeon, so I can at least discuss what I would need to do (besides the obvious losing weight) to become a viable candidate for the surgery that I need to repair the heart defect. Since my main issue was that I was being rejected by these surgeons without their even meeting me to discuss the situation, the risks, the possible complications, the possible outcomes, etc., this feels like an important step to me.
I have also been dealing with grieving over having to cut a very toxic family member out of my life. This process has been made a lot more tolerable by all the friends, both online and in RL, who have shown themselves willing to step up and fill various parts of that person’s shoes. I have three good friends who are willing to be my medical executors.
And I really got humbled by my friends. Monday, my RL friend C offered to be a designated blood donor for me. We are different blood types, so that won’t work, but instead, she offered to donate a pint in my name, which is superb, because her blood type is one of the rare ones they *always* need. I mentioned this on Facebook, and the next thing I knew, I had a list of ten people, some of which only know me from a Facebook game or two, who were willing to either be a designated donor or donate a pint in my name.
I also just got a phone call from my oldest friend, MK. We met back in sophomore year of high school, and – while our lives have diverged, we manage to find each other again and again. She is a nurse, and did some research last night (she said she couldn’t sleep, so she figured it might be useful) and has found two doctors who specialize in the specific kind of surgery I need. She also found out that I really need to have this done by a specialist, which may be rough to do given that I am on Medicaid. I will see who my internist recommends that I see – perhaps it will be one of these doctors. If not, I will see whoever he recommends first, then call these two doctors. One of them works out of New York Presbyterian. The other works out of St. Lukes. I can live with either of those.
Another thing MK told me to check, which I will, is whether or not my insurance will be accepted if I have to go out of state. This is something that, always having had private insurance before, I never would have even had to ask. Once again, I am humbled that the people who have the knowledge I need are so willing to provide it. She also spent an hour on the phone with me last night, explaining some of the things I will need to discuss with the surgeons when I do see them. These are things that, as a layperson, I would not necessarily thought of on my own, so I am doubly glad for her help.
And other friends have stepped up from all over the place to talk to me at night when things get hairy, to call me during the day to remind me I matter to them, and generally to help however they are able to.
Further, I am grateful today to God who gave me the most useful power of all for this kind of thing: While I damned sure don’t have the answers to much of this stuff, I seem to be able to find the people who can help me get them. This is something I’ve always been able to do, and it has kept my head above water more times than I can think of.
And, just to remind me to lighten up: the roomie just walked in with a big box that the mailman brought. It’s a box of yarn from a dear friend who is an author, including some very beautiful, soft yarn that will eventually be a scarf for me. It’s hard to forget the good things in the world when people are so going out of their way to make sure I remember them.
Anyway, I have some work to do today, so I should get to it.
No matter how I know you, please accept my thanks for bolstering me up through this journey.
First, sorry to be a day late, but adding the frigid temperatures to everything else, I spent much of the last few days huddled under my electric blanket.
Appropriate decisions have been made regarding the toxic family member, and things are being put into action to nullify future attempts to change my wishes and decisions about my health. I hated having to make some of them, but the truth is I don’t need a toxic person in my life ever, but especially right now when it appears I’m going to have to fight to get the appropriate medical care for my condition.
I have a ton of papers to fill out for my disability claim this week, and I even have a bit of editing to do, and a couple of knitting commissions to get my butt in gear on. These are good things, although I’m trying to wait a bit on the knitting because the state I’ve been in there is no way I could keep gauge, and I don’t want my work (both projects with fairly expensive yarns) to suffer. But I can feel the urge starting up again, so that’s good.
The weather seems to have held the upstairsikehs in, along with most of the neighborhood. The kids are starting to get more rambunctious than usual. For me and the roomie, this generally means having our sleep disturbed at various early hours by thumping, pounding, and screaming, often followed by parental bellowing. The other problem is that, as most of us know, heat rises, so that this apartment is something of an icebox most of the day and night – not what is needed for my health. But I have sweaters, sweatshirts, sweatpants, shawls, and the aforementioned electric blanket, so I am surviving.
The other bad news is that my tv has been “in the shop” since the 27th of December, which means my background noise is not there. I have a pretty extensive music library on the computer, but the problem is that I don’t tune music out the way I do tv noise. I’m wired to engage with music, so even if it’s an instrumental, my brain pays actual attention to it. Oh, well, I have survived without tv before, and I will this time, too. It just makes things a bit harder for me. Maybe someone can come over and show me how to hook up the old Mac I have sitting in the living room as a tv screen.
Anyway, I need to actually get some editing and writing done today, so I’m going to sign off now and try to do that.
I’m sitting here at my computer with a lot of pain, anger, sadness, and frustration tonight. Some of it, I can talk about, some not, since I believe the person involved occasionally looks at this blog.
Mainly, I’m sitting here wanting to shove everything in the refrigerator into my mouth, to stuff it all down. But I know that that’s self-destructive in so many ways.
1. A friend’s mother passed away. I feel for my friend since she has been undergoing all sorts of turmoil during her mother’s final illness. Not much I can do to help, but I am here if she needs me.
2. A cousin of mine is recovering from surgery for pancreatic cancer. This is the cousin I had wanted to be closer to all my life, although my father managed to sabotage that, as he did relations with most of the family on both sides. Still, I am glad that my cousin and I have found each other and are talking again. He says that, so far, his prognosis is good, and I am happy about that.
3. My cardiologist who was all for doing the open heart surgery, is now backing away from it because the surgeon he wants to use, who happens to be his boss, has rejected me out of hand as a candidate based on my age and weight (or so the cardiologist tells me – I’ve never seen or spoken to the surgeon). What they want to do instead will do nothing to solve the problem or give me my life back, and I am very angry. I am planning to refuse to have a pacemaker put in, since all they want to do that for is so that they can give me more drugs that won’t solve the problem without risking accidentally stopping my heart. Further, it seems the cardiologist never told my primary care guy that he was backing away from doing the surgery –my primary care guy found out when I saw him in the hospital and told him what was going on. He agrees that I should have some say in what happens to me, and that it was wrong for the surgeon to reject me without ever having seen me in person or spoken to me. Several people I have spoken with suggest that the surgeon is rejecting me because he doesn’t want to risk his “complication rate.” I agree with this assessment, and that means I’m going to have to talk to my primary care guy about getting a new cardiologist if the cardiologist won’t find a different surgeon. For one thing, I would not want a surgeon who doesn’t want to work on me doing so. I learned my lesson about that over the hemorrhoidectomy, thank you very much.
4. I have had to rethink who I want on my Medical Power of Attorney. I need to have people on there who I can trust. Unfortunately, I have one family member that I absolutely cannot trust to do what I want, as was proven yet again during my last hospital stay. So I have had to remove that person from the MPOA. Unfortunately, that person is making it all about them. Despite having done nothing but try to get me to mistrust all my doctors, hiding my wallet and credit cards without telling me where they were being put, and letting the patient transport guys walk off with my robe (then telling me I didn’t have a robe, when even the patient belonging manifest showed I did), even though out of all the things done watching that my robe didn’t get left behind was the ONE THING I had asked this person to do, this person claims that it will follow my wishes explicitly. The person’s response to being told of being removed from the MPOA was to ask my 90-year-old aunt to find out why, and insisting that I was now totally disowned by the person. My aunt asked me what she should tell the person, and I told my aunt to tell the person to call me if there were questions. Oh, when I told the person I was removing them, I was told that all my friends would just let me die, so I was making the wrong decision, “as always.”
The thing is, I need to be concentrating on my health now, not on all this petty crap. I’ve spent most of this weekend in tears, to the point where I seem to have broken a blood vessel around one eye. I’m going to have to fight to get the one kind of surgery that will actually repair the problems I’m having, and that surgery includes taking the risk that I will survive the procedure. I am willing to take the risk – the life I have now is pretty much crap. I can’t go places, can’t walk more than half a block without having to stop, can’t do the things I’m used to doing.
I’ve never been afraid of death. And, given that this stupid heart defect should have killed me in my late teens or early 20s, I have to say that, at 61, I’ve had a pretty good run of things. But I am not willing to live this stupid half a life. The thing is, if I am going to have to fight to have the actual surgery that I need instead of crap that won’t fix any of the problems, I need to be able to focus on the fight, not on all the petty crap my one family member seems determined to drag me through.
It’s easy to say that this person disowned me, so I should now have peace. However, it’s not so simple. My father worked hard at screwing the whole family up, and this person acts exactly like he did. I have spent most of my life ignoring the crap this person spews, on the grounds that I have too few blood relatives left to look for fights with any of them. However, I am not willing to turn my life over to the control of this person, and that, apparently, is the only way I am acceptable to the person. This person feels that it knows better than any of my doctors what they should be doing with and for me, and that’s just not so. I have very good doctors: my primary care guy saved my life twice, saved my roommate’s life, and save my ex’s life. Until he started backing away from doing the surgery, I would have trusted my cardiologist completely. He was honest with me about what was needed, and about how big a deal it really is, so that I am fully cognizant of the risks involved. That the surgeon wouldn’t even meet with me before rejecting me as a candidate is unacceptable to me, and I need to find out why my cardiologist is suddenly changing his tune before I decide whether to go on with him or not.
I have a lot on my plate to deal with, and to have even a minor part of my support system ripped away is a shock to that system. I am lucky – I have my oldest friend (we met in 1972) and my ex to put on my MPOA, and I have another friend who will step up if one of them has to bow out. And I have my best friend from high school I could probably ask if that third person has to bow out for some reason. These are people I can trust to know what quality of life is for me. In fact, the third person proved that on the phone today by noting that accepting the pacemaker and the drugs would, in me, be a sign that I am giving up.
I am feeling a little better for having written this out. I am still sad, however, because I know the person causing me problems will never understand why I feel I had to remove it from the MPOA (and, in fact, it was not on the MPOA – it filled in a new MPOA “for me” while I was in hospital and got me to sign it when I had a 102.8 fever – clearly not acting toward my behalf, since It knows I did not want it on the MPOA to begin with). I don’t want to devolve into repeating myself, so I will end this here, and hope that things are better when I wake up in the morning, since I have some work that needs to be done before the New Year.
I wish all my readers a happy, healthy, prosperous 2014 that is filled with lots of love and joy.
Okay. Just got back from the cardiologist, and here is the latest.
I am not the ideal candidate for open heart surgery, or even for the ablation. We already knew that. My age, my weight, yadda, yadda…
The other problem is that I am presenting oddly. For one thing, my heart’s septum distortion is 15. Normally, people with the amount of disability I’m having present with a much higher distortion. For another, the relatively small amount of drugs I am getting are slowing my heart down to 55. So they cannot presently give me greater amounts of drugs because there is a risk of slowing my heart down too much. Dr. S. has found a surgeon for me, but the surgeon has the same issues that Dr. S. and I both have about me undergoing surgery at this time.
The current plan, therefore, is to set up an MRI to doublecheck the amount of distortion, because there is a possibility that the echocardiogram under-represented that. Dr. S. is also changing out the 25 mg of carvedilol (twice a day) for 50 mg of Metoprolol (twice a day). After we get the result of the MRI, he will possibly schedule a CAT Scan of the head, neck and chest to see what is going on with my voice. Once we have those ducks in order, he will likely have a pacemaker put in, so that he can give me larger doses of some of the meds. My next few weeks will clearly be filled with doing some internet research, and making up some more questions to add to the list I’ve been keeping.
I know that caution is warranted. I know that I’m really glad my doctor is conservative in his treatment plans. But, dammit, I really want my life back. The problem is that, given how un-ideal of a surgical candidate I am, the big risks with open heart surgery are that a) I might not survive the surgery, and b) I might not be incredibly functional afterwards because of the issues that make me a less than ideal candidate. Dr. S. and I both agree that if stubborn were the major thing I need I have that in spades, but we also know that open heart surgery — especially when it means shaving off some of the heart wall as well as fixing the valve — is a big, damned, risky thing.
Meanwhile, I’ve been dealing with it about as well as possible. Marc, Abby, and a host of other folks make sure I get out of the house at least once a week, so I don’t just sit and obsess about how little I can do. I have been taking on as much work as I can, because work is always a good distraction. I’ve been reading, and even logged back into a couple of social games on Facebook, so that I’m not becoming too isolated.
I know I need to lose weight, but I am having trouble getting over myself and doing what I know works. I’m really resentful that I have to do it all over again. It took me two years to do it last time, and I was healthy and could walk a lot then. The gods know how long it will take without my being able to walk the way I used to. Honestly, the weight depresses me more than the heart issue. I was born with the heart issue and could not have done anything about it, because – until it triggered – no one even knew it was there. The weight – well, I’d lost most of it before I crashed and burned, and then, when I couldn’t go walking anymore, it all came back. So now I have to do it again, without the one exercise I love best in the world. I really need to get over myself, and go back to Weight Watchers, or at least start doing it at home or something, but I am just so frustrated about the whole issue. It’s the one whole part of this thing that makes me want to run away and hide. I’m trying to figure out how to get myself back to doing Weight Watchers, because I know that if I don’t go into it committed to doing it and doing it right, I will half-ass it and just be setting myself up for failure. And that’s the one thing I don’t have the option to fail at this time.
So, that’s where things are at right now. If any of you who know me well enough have ideas on how I can get over myself and get my ass back in gear, please let me know. Every day I can’t manage to do it makes a real difference at this point.