LETTING GO OF MOM – BY ELLIN CURLEY

As I get older, I’m expecting less from myself, at least in some ways.

I’m less judgmental. My standards have relaxed … some. I think this is good, but I’m not completely comfortable about it. Although I no longer expect myself to look my best every day — yes, I used to need to look “just right” even if all I was doing was running errands. Now, I go days without wearing make-up or curling my hair. I don’t automatically wear earrings and other jewelry. My husband barely notices. He’s fine with a more ‘au naturel’ version of me.

Mom at age 41

I still wear ‘nice’ clothes every day. I don’t even own sweatpants or a sweatshirt. So I haven’t utterly abandoned my 1950’s, early 1960’s dress codes completely.

I do worry, though. What if being more relaxed and forgiving about my appearance will morph into giving up? Not caring anymore? Am I going to turn into one of those people who goes out wearing pajama bottoms? I don’t ever want to be that person, but I’m afraid it might eventually happen to me, somewhere down the line.

On the other hand, I know that I am way too self-conscious about my appearance. My mother ‘dressed up’, with full make-up, every single day. She was appalled when I went to the supermarket looking anything short of stylish and polished.

“You always want to make a good impression on people,” she said. I thought she was over the top. But some of those judgmental attitudes and standards rubbed off on me and I’ve never been able to entirely escape them.

Mom at 65 years old

So I usually believe I’m just letting go of some of my mother’s baggage, but sometimes it feels like I’m just letting go. I prefer to believe I’m becoming a more well-adjusted person, with a better self-esteem. That other part of me feels like I’m crawling slowly down the path to dilapidation.

I hope I’m becoming a more enlightened, confident person. Less fixated on outward appearance. Accepting a modern-day, more casual sensibility about dress and appearance. And still, I hear my mother’s voice in my head saying “You’re going out looking like THAT?”

Mom at 85, six weeks before she died of cancer

Changing long-held values is hard. So is silencing your mother’s voice in your head. The change is welcome and overdue. It’s very late in coming. Which, surprisingly, doesn’t make it easier.

CATAPULTING TO ADVENTURE

Leaping, catapulting to adventure! What a concept!

It conjures visions of mountains to climb, rivers to ford. Diving to see the ocean bottom. Jumping from airplanes or diving into canyons tethered by elastic bands. I was never physically adventurous. This had less to do with fear but spoke more to my understanding of what I can actually do … and what I can’t.

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Clumsiness stands out head and shoulders from the crowd of reasons why I never became a rock climber, diver, or bungee jumper. I knew, in my soul, I would fall off the mountain, the bungee cord would pop and a fatal plunge awaited me. On horseback, I was daring, though looking back, I think stupid probably better applies. I fell off regularly and got broken. Eventually I learned to ride well enough to be less stupid and avoid additional breakage. By then, the damage was done and would never go away.

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Fear, trembling, and an already damaged spine notwithstanding, I climbed down the cliffs at Land’s End in Cornwall on a dare. Which is always the stupidest reason to do anything. But I did it anyway. I am not proud of it because it didn’t prove anything about me or the cliffs. I didn’t fall and break the rest of me and I get to say I did it, but wasn’t as if no one had dared do it before.

What’s the point of an adventure if you aren’t accomplishing anything new or noteworthy … or going somewhere you couldn’t go via some other safer, easier means? Why climb 1000 stairs if there’s an elevator?

Photo by Ben Taylor

Other adventures meant more to me. I moved across the ocean to live in a foreign country that became home. I wanted to experience another culture and see the world from a new perspective. For my own reasons. It was an adventure requiring mental rather than physical agility. Much more me.

Today,  a lovely hotel with comfortable beds is a grand adventure. Otherwise, I’ve passed my tests, thank you. I don’t feel any pressure to prove myself, not to me or anyone. But those of you who still have mountains to climb? Have at it. When you get up there, plant a flag and think (briefly) of me rooting for your success. Have fun out there. And … as they say … be careful. You only get one body and it has to (hopefully) last a long time.

KNOTS, PRETZELS, AND THE PRESS – BY TOM CURLEY

It’s been fun since the election watching the right-wing press, mostly lead by Fox News, bend themselves into evermore twisty and convoluted pretzels as they try to explain the latest gaffe/scandal/complete act of idiocy coming out of the White House.

The Dunderhead-In-Chief keeps admitting he does things, like, I don’t know. Like, give up code word “intel” to the Russians. In the Oval Office. Admitting that he fired an FBI Director because he was being investigated by the FBI over his connections to Russia … to the same Russians!  You know, stuff like that.

Hey guys, the CIA just told me some really cool stuff. Wanna hear it?

His defenses all boil down to: “He can do that if he wants to, so there” and “It’s Obama’s fault!”

This is nothing new. If we’ve learned anything in the last four months it’s that no matter how crazy we think things will be, they’ll be even crazier. We also know that the SCROTUS M.O. is to distract today’s scandal with a worse scandal tomorrow.

So, the question becomes, where does he have left to go? What scandal could be worse than today’s? Wait, I got it. He actually shoots somebody on Fifth Avenue in Manhattan to prove he wouldn’t lose any of his supporters.

SEAN HANNITY: Breaking news. President Trump just shot a man on Fifth Avenue in Manhattan. Secret service agents immediately pounced on the man and wrestled him to the ground.

SEAN HANNITY: Here to discuss this breaking story we have Senior White House Adviser Kellyanne Conway and Vermont Senator Bernie Sanders. Kellyanne, let’s start with you.

KELLYANNE CONWAY: Well first off I think it’s very unfair the way the fake news media have been saying the President shot a man on Fifth Avenue.

BERNIE SANDERS: But he did! He shot a guy! On Fifth Avenue! On live TV!

What the hell?

KELLYANNE CONWAY: That’s one way of looking at it. I didn’t see the President shoot a man on Fifth Avenue. I saw the President save a man on Fifth Avenue.

BERNIE SANDERS: Save him?? From what?!

KELLYANNE CONWAY: Radical Islāmic Terrorism.

BERNIE SANDERS: WHAT???!!

KELLYANNE CONWAY: And besides, the President was elected in the largest landslide in the history of the world. So, he has the right to shoot anybody he wants.

BERNIE SANDERS: NO HE DOESN’T!!!

KELLYANNE CONWAY: Well, he can order drone strikes. He can send troops into war. He can launch missiles. In every case, he’s killing somebody. So why can’t he just take out a gun and shoot a man?

SEAN HANNITY: Hmmm. That makes sense. Executive privilege.

BERNIE SANDERS: NO IT DOESN’T!! Well, actually, it makes a little sense … No! What am I saying??! This is still crazy! He shot a guy to prove that none of his supporters would leave him!

KELLYANNE CONWAY: That’s ridiculous. He was saving a man from Radical Islam. Every White House aide agrees with me.

SEAN HANNITY: This just in: President Trump told Lester Holt of NBC News that he shot the man to prove none of his supporters would leave him.

BERNIE SANDERS: SEE???

SEAN HANNITY: This also just in. A recent CBS/NY Times Poll says that President Trump has not lost any of his supporters. 85 percent said, “The guy had it coming.” The other 15 percent said “The guy probably had it coming.”

And so it would go. Full confession. This idea is not new. Google “George Bush ate a baby” and “George Bush Saves a baby”.

Everything old is new again. Just dumber.

MEMORIAL HALLWAYS

Every night, I fill up my cup, grab my bag o’ medications, pet the puppies, and hike the hallway to the bedroom at the other end of the house.

After arriving, I put the bag where it belongs. Adjust the bed to its TV viewing angle. Turn on the television for Garry. He watches with headphones while I read or listen to an audiobook. I fire up my blue-tooth speaker. I put my medications into a cup which is actually the lid from a medicine bottle. Convenient and keeps little round pills from rolling off the table.

I never remember everything. Typically, I forget to turn off the fans in the living room. I sit on the edge of the bed trying to remember what I should have done but didn’t.

“Ah,” I think. “Fans.” I go back to the living room. Turn off the fans. Pet the dogs. Assure them they are not getting another biscuit no matter how cute they are.

Back down the hall. Brush teeth. Sit on the edge of the bed. Oh, right. Need to refill antihistamine bottle. It’s empty. Back to the kitchen where the big bottle is stored. Fending off the dogs, I amble back to the bedroom. And get the nagging feeling I’ve forgotten something else.

Ah, that’s right. I didn’t close the kitchen door. It’s a dutch door and we leave the top open during the day to catch the breeze. Tonight, it’s supposed to rain so I should close it. Up the hall to the kitchen. Close door. Pet dogs. Back to bedroom. Garry shows up, having done whatever it is he does for however long he does it in the bathroom. He settles into watching highlights of the Sox game, followed by a movie or three. I turn on my audiobook.

Forty-five minutes later, I’ve got a headache. I’m not sleepy. Everything hurts. Why are my medications not working? There’s nothing more I can take. Panic sets in.

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Which is when I realize all the pills are in the cup. What with all the walking up and down the hallway, I never quite got around to taking them. Which probably explains why they aren’t working.

I laugh. Continue laughing. Garry takes off his headphones long enough for me to explain why. I got to the punchline, he looks at me and says: “You hadn’t taken them?” He smiled. Nodded. Put the headphones back.

As our memory — collectively and individually — gets less dependable, we have substituted routines and calendars. If we do everything the same way at the same time every day, we’re less likely to forget. Or not remember if we did it today, or yesterday.

The other evening, we were watching a show that included a dog. Garry assumes I know every dog breed at a glance. He’s right, usually. I know the breeds, but these days, I may not remember its name. I will usually remember the group — guarding, herding, hunting, hound, terrier, non-sporting (“other”), toy. If I remember that, I can go to the AKC site, find the group, scroll the list and find the dog. But they’ve changed the AKC website, so it’s not as easy as it used to be. I wish they’d stop fixing stuff that isn’t broken.

I knew the dog that Garry was asking about was the same as the dog Frasier (Kelsey Grammer) had on his show. The dog’s name was Eddy. I remembered that. No problem. The breed name was on the edge of my brain, but not coming into focus. I gave up and Googled it.

Search for: “Breed of dog on Frasier TV show.”

Except I couldn’t remember the name of the TV show, either. So I first had to find the name of the show.

Search for: “long-running comedy on TV about psychiatrist.”

Up popped Frasier. Phew. I could have also found it by looking up that other long-running comedy, “Cheers,” in which Frasier first appeared, but I couldn’t remember its name, either. One of these days, I’m going to have to Google my own name. I hope I find it.

SHARING THE WORLD IN MAY 2017

Share Your World – May 22, 2017

What one thing have you not done that you really want to do? 

Ride in a hot air balloon. It must have something to do with “The Wizard of Oz.” I’m sure if I go drifting, I’ll wind up in a charming parallel universe … or maybe something even better. Like, the past, but a nice past that’s much better than the past really was. I want that piece of the past where no one hit the shores of an unknown (to Europeans) country and didn’t come ashore with every intention of destroying everything and everyone until they owned it all.

I want to float into a better world. That’s not too much to ask, is it?

How often do you get a haircut?

Do we count doing it myself? Because other than that, “almost never” would be the good answer. I snip it and clip it myself to keep it from looking excessively shaggy, but otherwise, pretty much never would be my best answer.

In regards to puzzle what’s your choice: jigsaw, crossword, word search or numeric puzzles?

Always word search, with “Scrabble” as my lifelong favorite.

How many cities have you lived? You can share the number of physical residences and/or the number of cities.

I was born and raised in New York. The city of New York. Born in Brooklyn, moved to Queens (1) then Queens (2).

Matthew – 1958

From the second home we had in Queens where I spent all my years in public school, I left for college. I rented a room near Hofstra University, in Hempstead, New York.

The house on Bedford Avenue in Uniondale

Soon — very soon — I got married and moved to an apartment in Hempstead. Then we bought a house in nearby Uniondale. Ten years later, we sold that house and bought a bigger house in (you guessed it) Hempstead.

Then, after some considerably discontented years of marriage, I plucked myself and my son and moved to Jerusalem, Israel where we stayed for nine and a half years.

Jerusalem, Baka

I came back, lived briefly in the house in Hempstead, then bounced up to a rental place in Waltham, Massachusetts. Because Garry was in Boston and I wanted to be where he was. After that, I bought a place in Lynn, Massachusetts. Immediately after I spend my money on the apartment in Lynn, Garry thought we should get married, so I rented the place in Lynn and we moved into a place in Charles River Park, which is very downtown Boston.

After a year, we rented another place on Beacon Hill — cute but WAY too small.

Ten months later, we bought a triplex in Roxbury and lived there for ten years. Ten years during which I didn’t even own a camera. My non photographic years. Seriously, I really didn’t take any pictures for the entire time which seems a bit weird today. It wasn’t until a few years — after we moved to Uxbridge (which isn’t Boston or even close to Boston) — that I got busy taking pictures again.

And here we shall stay. I know this isn’t Boston because people in Boston, when asked about this house, say “You live WHERE?”

Here. We live here.

DOING WHAT WE MUST: SURVIVING IF YOU CAN’T PAY FOR DRUGS – A GUEST POST

Case Management

When you are diagnosed with an illness for which there is no cure, but long time survival is possible, you quickly learn that the most important case manager you will ever have is yourself.  You need to learn everything you can to survive — legally and, if necessary, illegally.  You tend to drop your concern for law when your life is at stake, especially when you will “First, do no harm” (Primum non nocere), the oath of doctors and others helping people survive.

Support group members will urge you to not merely educate yourself about the disease, but to get a good case manager. After you understand all your treatment options and the decisions you will have to make, your case manager can help you navigate the maze of health care bureaucracy. This is important for everyone, whether or not they have a job or insurance. Anyone can be taken advantage of by the system.

Illustration: NBC News

Early after an HIV positive diagnosis, I was laid off from the job which provided my health insurance.  The fight to start COBRA coverage was immediate.  Many states have programs to help pay for continued health insurance under COBRA (Consolidated Omnibus Budget Reconciliation Act).  There may also have other drug assistance programs because the cost of medication, even with insurance, may be out of reach for those without jobs and even those with minimal jobs.

While state help was being lined up, my well-known insurance company was deciding whether to grant continued insurance.  Their basic argument was they were headquartered in another state and therefore were following other guidelines. The case manager got experienced lawyers familiar with this sort of trick to deal with the insurance company.  They finally offered COBRA and the state came through with payments.  This was the value of a knowledgeable case manager, but the process took time.

A Re-Purpose

The interval during the battle for coverage brought other concerns.  I knew I might be able to afford the multiple drugs for a month or two, but the extreme costs would quickly wipe me out.  That is when I learned about “other” assistance.  This kind of assistance is spoken of quietly by those who are desperate, but can be trusted.  It is the kind of help that takes place all over our region, and probably across the country too.

My case manager told me he might be able to help with some drugs, but not all.  When I came for an appointment one day, he told me to wait. He went to a pharmacy and came back with some of the medication I needed.  He took a black marker and carefully crossed out a name and gave it to me. He said it was mine now and not to say anything to anyone about this.  Ever. I left and kept quiet for years.  The agency he worked at is gone now, and I don’t know what happened to the case manager.

He had gone to a pharmacy that had secretly offered help.  When a patient did not pick up their HIV drugs for over a month, they did not put the item back in stock, but held it on the side for emergencies. If the item had been covered already by insurance, and the customer did not pick it up, they felt free to hand it to another. The drug company was paid and the insurance company was none the wiser.  This tactic is illegal, but many will run the risk to save lives.

Helping One Another

Not all managers are so resourceful or willing to run such risks.  Strictly speaking, it is against the law — dispensing drugs without a license.  There are individuals in support groups who are willing to assist with drugs, when no one else can.  For a while, there was an agency here that had acted as a go between to pass drugs from one patient to another.

In support groups, some would mention how they could bring unopened bottles of HIV medicine to the agency and they would keep it for those in need. Then if a member could prove they had a prescription for a particular drug the agency had on hand, they would give a month or two of the drug to the client.  That agency no longer does this or will even admit they did it for many years.  They could be shut down just like the agency referred to above.

Drugs are collected in many ways.  If someone who has gotten a three-month supply of medication, but then the drug was changed by his doctor, he would bring the unopened bottles to the agency to lock up in secret. If someone passed away, a mate might turn in unopened items to help someone else.

The fear of being caught helping to save lives has led many away from this type of help. Patients are left to do what they can for each other via contacts in support groups — or even “on the streets.”  Those fighting the disease can not imagine throwing out drugs that can help others.  Turning in drugs to be destroyed seems a bigger crime than “dispensing drugs without a license” for those who hold a prescription for a life-saving drug.

“Healing those who seek my help”

With the loss of agencies willing to help patients get drugs, legally or illegally, some doctors are willing to fill the void. There are those who collect back unopened drugs so others who can not afford them will benefit.  A doctor knows the prescription of a patient and will generally learn in private conversation who needs help.  If the drugs have already been bought and paid for, it seems a humane thing to do. In this country, this kind of help is unfortunately necessary.

The High Cost of Drugs

HIV drugs come in several classes and a patient is likely to take one or more from each of 3 or 4 groups per day.  Few drugs have generics and even those are expensive.  The retail cost in the United States for three or four of these drugs could run 4 to 5 thousand dollars per month.  Patients receiving various assistance programs are terrified of health care “reform.”  Out of necessity, we help each other.

When I was in Germany and discovered I had miscounted a medication. Of course I was panic-stricken.  I went to a pharmacy, who sent me to a local physician who spoke English.  I told her of my plight. When she was satisfied I had demonstrated I had such a prescription (I always bring proof if I travel), she wrote a new prescription. I went back to the pharmacy, prepared to charge to my credit card an outrageous amount due to my miscalculation. I knew my insurance card would not be honored overseas. The drug was reasonably priced, about one tenth what it costs retail here.

Aside from one doctor I know of, many who would otherwise be willing to help with drugs and health care services have been driven away –or at least underground.  Americans do not have the protections other countries around the world offer. In the absence of legal support, we do what we can to help everyone — not just with advice, but with life-saving drugs denied to many because they can’t afford them.


People without insurance die.
This is not a political opinion. It is a fact. 

NOTE: Since the author isn’t around to answer questions, comments are “off.”  I can’t answer questions because I don’t have any answers, sorry.

DRIFTING ALONG WITH THE TUMBLING TUMBLEWEED

ADRIFT IN THE WEST

I am retired which is, by definition, at least a little bit adrift. This is a good thing and the real reason we retire. After a life of deadlines and commuting, some drifting seems like a pretty good idea. So here I am. Just drifting along with the tumbling tumbleweed … with memories of those great cowboy movies of childhood.

Hi Roy! Hi Trigger! Hey, Bullet! Hope y’all are doing well. I miss you. All of you. You were the good guys. We trusted you. Where are you now, when we need you?