HinesSight

Woman in wheelchair brought tears as I watched So You Think You Can Dance

There's a lot of crap on television. There's also beautiful, unforgettable, highly emotional moments. That's why I watch. A single moment of that sort makes up for all the crap.

My wife and I have watched every episode of every season of So You Think You Can Dance. The show took a hiatus during the covid years. It reappeared recently. So far this season has had a lot of memorable auditions, as the three judges select contestants for a Top Ten competition, if I recall the number correctly. (It's varied somewhat over different seasons.)

The audition that has stuck in my mind most strongly came from a 27-year old woman, Kaylee Bays, who was diagnosed with Ehlers-Danlos syndrome at the age of 21. Watch this video of her performance, which begins and ends in a wheelchair. 

It brings tears to my eyes every time I see it. 

I can't stop thinking about what she said to the judges. That last sentence, "As I lose pieces of myself, I will dance until I am dancing with my eyes," is amazingly beautiful and inspiring.

My doctors predict that I only have about five years left of mobility at this level. I feel more connected to myself as a human than I ever have. As I lose pieces of myself, I will dance until I am dancing with my eyes.

I've had painful sciatica in my right leg, hip, and butt for more than four years. In December of last year it got quite a bit worse, though initially in 2020 the pain was so bad I frequently had tears in my eyes for that reason.

I can't walk very far now. I can't go to my Tai Chi class now. I can't exercise without enduring some intense pain. I feel sorry for myself, even though I try to be as positive as possible about the prospect of finding some relief once my appointment at Salem Pain & Spine Specialists arrives in ten days.


The example of Kaylee Bays, who is much worse off than I am, yet has a much bigger smile than I'm able to manage most days, makes me feel that no matter how bad my pain is, and no matter how little I may be able to benefit from treatment, I can still fight as hard as I can to keep on doing the things I like to do and need to do.

For Bays, that is dancing. However she fares in the So You Think You Can Dance competition, she's clearly a winner. CrippleMedia describes some reasons why in "Breaking Barriers: Kaylee Bays' Triumph for Disability Representation on So You Think You Can Dance." Excerpt:

In the realm of performing arts, individuals with disabilities often encounter barriers to showcasing their talents. Kaylee Bays, a dancer hailing from Los Angeles who performs on wheels, etched her name in history as the first wheelchair user on So You Think You Can Dance. Her poignant and deeply passionate jazz solo, set to Pink’s “Never Not Gonna Not Dance Again,” embodied Bays’ journey as a disabled dancer.

The song serves as a potential anthem for disabled dancers, Highlighting that disabled dancers can still enjoy their passion, even after diagnosis or as their disability progresses, by adapting moves to what is accessible to them. At three, Bays embarked on her dance journey and pursued a professional career until her diagnosis intervened.

At 21, she received a life-altering diagnosis of Ehlers-Danlos syndrome, a connective tissue disorder, after enduring years of unexplained pain. This syndrome causes joint dislocations, stretchy and fragile skin, and hypermobility. She was informed that she had to stop dancing, a prospect that left her heartbroken.

However, Bays was determined and taught herself to dance from her wheelchair. On the show, she candidly shared her feelings of isolation and expressed a desire for a fearless role model when she first became disabled. Now, she fulfills that role for her community.

If you're wondering about my absence, the answer is: sciatica

There's lots of painful medical conditions. In my 75 years, I'm only become intimately acquainted with one of them: sciatica. 

If you're unfamiliar with the term, I'm glad for you. Because sciatica pain, which for me is in my right leg, hip, and buttock areas, can range from mild to excruciating. I'm familiar with the whole range. 

Injury or pressure on the sciatic nerve creates the pain of sciatica. So sciatica is a symptom of an underlying medical problem. However, that can be tough to figure out. Thus I tend to view sciatica as the problem, though I realize to be rid of it, whatever is causing it needs to be identified.

I've had sciatica since early 2020. It was extremely painful back then, which led to me getting physical therapy. This was at the beginning of the Covid pandemic. That prevented me from being able to get a MRI of my lower spine, which often is the culprit when it comes to sciatica.

Eventually I got better, though the pain in my right leg never went away completely. For four years, whenever I was on my feet, I felt the pain. But it didn't stop me from doing what I wanted to do and needed to do.

In December of 2023, though, it started to get worse. The pain from Sciatica 1.0 was just in my right leg. Once Sciatica 2.0 emerged, pain was added in my right hip and buttock. That made it quite a bit more painful to stand, walk, or otherwise move around.

I got more physical therapy. I do those exercises twice a day, twenty-five minutes or so in the morning, then the same in late afternoon or early evening. At first I could keep going to the Tai Chi classes that I've enjoyed since 2005. For about a month now, I've been unable to go to the classes. Too much pain.

Same with going to meetings of the Salem City Club and other gatherings. If I sit on certain chairs for too long, the pain worsens when I stand up. I'm fairly stoic about my sciatica pain, but sometimes it is difficult not to groan. So I've been avoiding gatherings where my pain could disrupt things.

That's my basic explanation of why I haven't been going to places I usually am at. I wanted to write a blog post about this in part to let people know the reason for my absences, and in part to express my sympathy/solidarity with other sciatica sufferers.

It can be an extremely annoying pain. My worse moments have been in the middle in the night when I need to use the bathroom, or when I get up after sleeping. A few times I was almost unable to move from my bed. When I tried, the pain was so intense I'd cry out uncontrollably, and needed help from my wife to just put my pants and shoes on.

Now I can do that on my own, though I use a single crutch to hobble into the bathroom, the pain is so bad. When I'm asked to rate the pain on a scale from 1-10, I say that at its worst, it's a 10. 

On the plus side, I've gotten a lumbar MRI, though I haven't learned from a doctor what it means yet. I have an appointment with a Salem neurosurgeon, Dr. Kafka, next Tuesday. Then I should learn what treatment options are open to me. 

In case you've never experienced nerve pain, it's very different from muscle pain. Much worse, in my experience. It's sort of akin to the difference between being sad, and being clinically depressed (which I was, in 2017). Nerve pain and depression simply exist on a different scale of suffering from muscle pain and sadness. 

So to those who suffer from sciatica, I feel for you. May we all find relief. I just wish I'd bought stock in whoever makes the generic Tylenol and Advil I've been using copiously. Those substances help some with the pain, but not a whole lot.

By the way, a Regence advice nurse gave me a good tip for using Tylenol and Advil. She advised alternating between Tylenol and Advil every four hours, using two 500 mg Tylenol capsules and one 200  mg Advil capsule each time. That produces 3,000 mg of Tylenol every 24 hours and 600 mg of Advil, both within the recommended daily limit.

Masters of the Air -- a moving series about the bravery of WWII aviators

Having just finished watching Apple TV's nine-part series, Masters of the Air, I can heartily recommend it to anyone who would enjoy a deeply moving portrayal of the American aviators who flew B-17 Flying Fortress bombers into Europe from bases in England during World War II.


It's based on a book with the same name about the 100th Bomb Group. At the conclusion of the final episode, some of the main characters are shown along with photos of the real-life aviators, plus a description of where life took them after the war ended. 

I found that highly emotional.

Partly because while I barely knew anything about my father, John Hines, as my mother and he divorced when I was too young to remember him, and I only was able to spend one hour with him in my entire life, a newspaper clipping my mother saved of her post-war engagement notice said that he served in the Navy for three years and "was overseas two years as instructor with the 17th Marine Regiment, engineers, attached to the First Marine Division." 

That Wikipedia link says that the First Marine Division saw heavy fighting in the Pacific. I have no idea what experiences my father had, but watching Masters of the Air, I felt that even though he was a Marine, not an aviator, and a jerk, I had to give him a mental salute for the sacrifices he and everyone else who served in the Armed Forces during World War II endured.

Over and over, while watching this series, I'd think, "No matter how badly my day is going, it's a hell of a lot better than being in a Flying Fortress flying into Germany before the allies had air superiority." Because in many respects those were suicide missions. Sometimes half or more of the planes were shot down.

Yet the crews were eager to keep flying, notwithstanding the extreme danger they faced, because it was so important for them to obey their orders and do their part in defeating Nazi Germany. 

Masters of the Air starts off sort of slowly. The first few episodes are devoted to getting to know the characters, two of whom are rather confusingly named "Buck" and "Bucky." After that, the bombing missions are realistic and tense. It takes amazing courage to keep flying through flak, antiaircraft fire, and fighter attacks in a lumbering Flying Fortress that has to be kept on a steady course during a bombing run.

Obviously it isn't giving anything away to say that Masters of the Air has a happy ending. The allies win the war! To see the B-17s used to drop food via parachutes at the very end of the war to desperately hungry people in the Netherlands echoed the air drops the United State is doing in Gaza now.

Health care workers, it's the system that bothers me, not you

Way back when (to be more specific, the 1970s and 1980s), I was, in order of my career moves, a research associate in the Oregon Medical School Department of Family Practice, a manager with the State Health Planning and Development Agency, and the executive director of Oregon Health Decisions, a pioneering community-based bioethics effort.

As I like to say, I must have done a terrific job, because now our state's health care system is running perfectly smoothly with no problems.

Of course, that's a blatant falsehood. Oregon, along with the rest of the United States, has a disjointed health care system marked by inefficiency, inequality, and crazily high costs.

However, most people are satisfied with their health care providers. I know I am.

The dissatisfaction is mostly with the system that these providers have to work in, and under. Often this doesn't become obvious until someone has a medical problem that is causing them a lot of distress, so speedy treatment is desired, and the health care system moves with decided unspeediness.

As you probably have guessed, one of those someone's is me. After suffering from sciatica in my right leg that started off very painful in 2020, when I was a youthful 71, then got better though it never went away, the sciatica has morphed into being very painful again now that I'm 75.

So I've been seeing my primary care provider, a physical therapist, and the staff who have gotten me a lumbar X-ray and MRI. I like all of these people. It's the system that isn't working so well.

On the most basic level, there's a disconnect between a person with a medical problem, me in this case, and policies that are a buffer between what people and their providers want, and the insurance that pays for most of health care.

I don't mean to burst the bubble of those who are looking forward to becoming old enough to get Medicare, having tired of the B.S. private insurance companies engage in. I used to be in that bubble myself. I couldn't wait to rid myself of my Blue Cross/Blue Shield insurance.

However, when I became eligible for Medicare, I decided to sign up for a MedAdvantage plan, as that seemed, well, advantageous. Kind of amazingly, I chose Regence MedAdvantage -- you know, the same corporation that offered the private insurance I detested for so many years.

It seems to me that with every passing year, Regence MedAdvantage introduces more barriers to getting needed care, probably due to cost containment pressures. What particularly irritates me is how third-party contractors are used by Regence MedAdvantage to assess referrals made by my primary care provider.

This doesn't happen with every referral, but often enough. For example, today I had an appointment with my physical therapist. He'd given me exercises to do over about five visits, and offered some great advice about how to manage my sciatica. 

Since it seemed time to stop our visits, he started to suggest a plan for how to maintain an ability for me to see him again if I needed to.

Then he glanced at his computer screen and said, "Oh, but you have _______ as an intermediary. If we don't close out your case, and I see you again, they'll only approve half the visits they did this time, like from eight to four. And after that, they'll keep cutting the visits, like from four to two. But if we close your case, after 60 days they'll treat you as having a new problem and grant the original number of visits."

OK, I got what he was saying. However, it seemed strange that we weren't talking about what would be best for treating my sciatica problem; we were talking about what would be the best approach to dealing with my insurance problem.

Again, I have Medicare. I'm much better off, bureaucratic B.S. wise, than people who have private insurance.

But "much better" doesn't equate to pleasant. It bugs me when my primary care provider orders, say, a lumbar MRI to find out what is going on with my spine, then I have to wait for an approval from either Regence MedAdvantage or whoever Regence contracts with to decide if an MRI is warranted.

I realize this is a crazy idea, given how our health care system (actually a non-system) is set up, but it sure would be great if health care providers were the ones making the decisions as to what is appropriate care, with outsiders getting involved only if there's an obvious problem with what has been ordered for a patient.

Currently I'm waiting for a referral to a pain and spine clinic to be processed. I've been told that the referral has been approved. It just hasn't been processed, whatever that means. So I bug my providers, asking them what's taking so long, and they've been patient with me. I try to assure them that I'm not unhappy with what they're doing.

It's like when I hear my wife calling her MedAdvantage company when there's a problem with a prescription or care being denied. After explaining the problem, she always says, "I'm not irritated with you; you just work at ________; I'm irritated with management and your company's system."

 

Starlink Gen 3 pipe adapter is horrible. Here's how mine got fixed.

I became a Starlink beta tester in January 2021. While this Space X satellite internet system was buggy in the beginning, it's gotten increasingly reliable. And the download/upload speeds are better also. At least, they are here in western Oregon.

However, the pipe adapter that Starlink is selling to attach the Gen 3 (third generation) dish to a variety of mounts -- I'm using the Ridgeline Mount for my Gen 3 dish -- is, to put it bluntly, a piece of crap. It's hard to believe that Starlink let this poorly designed piece of equipment that replaces the fold-out legs that come with the Gen 3 dish ever be sold to customers.

I got the Gen 3 rectangular dish even though our Gen 1 round dish was working fine. But the Gen 1 dish has a fixed cable that can't be replaced, and I figured that after more than three years of constant use, it was going to fail at some point. So I left the Gen 1 dish up on our roof as a backup for the Gen 3 dish.

I'm not hugely mechanical. However, as soon as I got the Gen 3 pipe adapter from Starlink, I knew it was going to be a problem.

My Gen 1 dish came with an attached pipe that clicked neatly into the Ridgeline Mount (one with the red bricks for ballast in the photo above). The dish has been immovable through three years of Oregon storms.

Since the Gen 3 pipe adapter was so flimsy, with just a set screw holding the dish to a pipe, I contacted a friend, Frank, who is a blacksmith and skilled metal worker. He made me a short pipe with a "telescope" feature in an attempt to mitigate the pipe adapter's shortcomings. See: "A blacksmith made this for me to fit in screwy Starlink Gen 3 pipe adapter."

This is how the pipe turned out.

A short pipe with a notch on the bottom that would fit over a plastic bulge in the Ridgeline Mount to prevent the pipe from rotating in strong wind, and a larger top that would fit nicely in the Gen3 pipe adapter. This photo taken from above shows how Frank welded two pieces of larger pipe to form the "telescope" feature.

Here's how well the pipe fits into the pipe adapter, which is on the back of the Gen3 dish. This allows the set screw to be tight with just a few turns. But you can see that the round receptacle on the pipe adapter into which a pipe goes is very shallow, and the set screw relies solely on friction to hold the dish to the pipe.

That explains why not long after I installed the Gen 3 dish on our roof with the pipe adapter and Ridgeline Mount, one morning I woke up, looked at the Starlink app on my iPhone and saw that the dish now was something like 65 degrees off target, whereas before it was 8 degrees.

Going outside to look at our roof, the reason was obvious. The Gen 3 dish had blown off the pipe and was lying on the roof. Thankfully, it only fell about a foot and was undamaged. Working fine, in fact. I got a ladder out, climbed up on the roof, and reattached the dish to the pipe, tightening the set screw as firmly as my 75 year old hand could do it. 

(I'm in good shape, so it was tight. Of course, it was tight before.)

Well, a few days ago we had some winds gusting to the 40-45 mpg range, or thereabouts. Nowhere near a hurricane, for sure. But the same thing happened: the dish was blown off the pipe again. This time I called Frank for some advice. I'd gotten a comment on one of my blog posts about the Gen 3 pipe adapter that advised using zip ties around the set screw.

That seemed like a good idea. However, Frank had an even better idea.

We went up on the roof and Frank drilled a hole through the outside layer of the two-layer "telescope" feature of the pipe he made for me. After some fiddling and grinding, the set screw fit through the first layer (a short piece of pipe) and butted up against the second layer (another short piece of pipe with smaller diameter).

That way, if wind tried to lift the dish off the pipe, the set screw wouldn't allow it, since the outer layer of the "telescope" feature would keep the pipe in place. Frank used a zip tie around the raised notch on the pipe adapter and the set screw as insurance, to prevent wind from lifting up the side of the dish on the opposite side of the set screw.

As a bonus, the two of us got the Gen 3 dish aligned perfectly. The Starlink isn't showing any problem with where the dish is pointing. (It lacks a motor to align itself, which the Gen 1 and Gen 2 dishes have.)

So far the dish has stayed on the pipe through some decent wind, though not as strong as what blew the dish off twice. And the speed is good: at the moment (10 pm), 302 Mbps down, 30 Mbps up. I'm confident Frank's fix is going to keep the Gen 3 dish secure.

I've complained to Starlink about the crappy Gen 3 pipe adapter. Haven't gotten a response yet. By the way, I have the pipe adapter that was sent after the first version was recalled. Apparently the only change was to the set screw.

Again, I was fortunate because the dish didn't fall very far when it blew off the pipe adapter. Some Starlink customers have their dish high up to avoid obstructions. They'd be advised to have a tether to catch the dish if they're using the Gen 3 pipe adapter. 

As I said in a previous post:

What bothers me is that Starlink leaves it up to purchasers of the Gen3 kit, which is now the standard residential kit, to figure out how to best attach the dish using the poorly designed pipe adapter. I was fortunate to have a blacksmith as a friend. But what does a single woman, say, do? 

Sure, she could go to her local hardware store and get a one inch pipe, hoping that it would be sturdy enough in the pipe adapter to hold the dish in windy/stormy conditions. It just seems to me, though, that Starlink should have made available a pipe similar to the one Frank made for me for customers who want to use the Ridgeline Mount to hold their Gen 3 dish. 

Again, the Gen1 and Gen2 dishes came with an attached pipe. For some reason Starlink decided not to do this with the Gen3 dish. That's fine, but it seems strange that after paying $600 for the Gen3 kit, a customer then has to search for a pipe that fits well in the pipe adapter and Ridgeline Mount.

I like my Starlink Gen 3 dish (even though it fell off the pipe adapter)

Here's a report on my installation of the Starlink Gen 3 dish, which I bought so our Gen 1 dish could serve as a backup. First, some background.

This is how I started off a post about needing to have a blacksmith make me a pipe to fit in the poorly designed pipe adapter for the Gen 3 dish. I called the post, "A blacksmith made this for me to fit in screwy Starlink Gen 3 pipe adapter."

I've been a happy Starlink customer since January 2021, when I reported on the installation of the first generation round dish that I was chosen to be a public beta tester for. I described my tale in "Our Starlink is working well on its Ridgeline Roof Mount."

Since, that Gen1 dish has worked flawlessly, though Starlink has had its reliability ups and downs, with recent experience being much more on the upside, probably due to the much larger number of Starlink satellites in orbit now.

But nothing lasts forever, and my wife and I are heavily dependent on the much faster broadband we enjoy with Starlink compared to the crappy 6-7 Mbps CenturyLink DSL brought to us via the non-cutting edge technology of copper phone wires.

So when Starlink sent me an email last year saying that as a beta customer I could purchase the new third generation dish, getting several months of service free if I bought it now, I decided to buy the Gen3 kit.

My plan was to use the Gen3 dish, router, and power supply, leaving the deactivated Gen1 dish up on our roof as backup if something went wrong with the Gen3 kit and we had to wait a while before replacement equipment could arrive.

I ordered the new version of the Ridgeline Mount, as I wanted to put the Gen3 dish next to the Gen1 dish.

Here's a photo of the rectangular Gen 3 dish on our roof nestled next to the round Gen 1 dish. The Ridgeline Mount now has a different design. And you don't have to supply your own weights (I used bricks for the Gen 1 mount). The gray weights are supplied by Starlink.


This photo shows the angle of the Gen 3 dish. It doesn't have a motor like the Gen 1 and Gen 2 dishes. I gather that the fixed angle works because there are many more Starlink satellites up now.

The installation went quite smoothly. The 50 foot cable that comes with the Gen 3 kit looks like it will be able to follow the path of the 75 foot cable that the Gen 3 dish came with. I got a 150 foot cable just in case it didn't.

Pleasingly, both cables fit through the hole in the side of the house leading to our living room, where the router and power supply are. (The Gen 1 cable is permanently attached to the dish, so I had to leave it up, which is fine, since like I said, the Gen 1 dish will be a backup in case of problems with the Gen 3 dish.)

It was a bit of a pain to have to get back on the roof when the Starlink app told me the dish needed adjusting. That's the downside of not having a motor that turns the dish.

I believe the app said that the dish was 16 degrees off. I took my iPhone up on the roof and fiddled with the Gen 3 dish. It was kind of frustrating to rotate the dish, check the app to see if it was aligned correctly, then see that Starlink wanted it rotated back the other way.

The best I could do was get the dish just 8 degrees off. One reason is that I had to loosen the set screw on the pipe adapter, then turn the dish with one hand while looking at the Starlink app that I was holding in my other hand. The download speeds seem higher than the Gen 3 dish was giving us, so I'm not going to worry about the dish not being in the precisely correct position.

(The speeds vary a lot. Usually they're between 75 Mbps and 200 Mbps.)

A bigger aggravation was the dish falling off the pipe adapter when the wind was just 40 mph or so, maybe higher with gusts. That isn't exactly a hurricane. As noted in my post about the pipe adapter, the set screw just relies on friction to hold the dish to the pipe adapter. I thought I had the screw firmly tightened. Here's a photo.

But one morning the Starlink app said that the dish was 36 degrees off. Figures, since the dish was lying on the roof. We'd had about 40 mph winds the night before, maybe a bit higher with gusts. Not a hurricane, though.

You can see that there's not much room for a pipe to fit into the adapter. I was fortunate that the dish only fell a foot or so, landing on the back side. (We still had a decent internet connection even while the dish was lying on the sloping roof.) Some Starlink owners have to put their dish on a tall pipe/pole to get above obstructions. In that case, the dish falling off would be a bigger deal.

I can't understand why Starlink is shipping the Gen 3 dish with such a messed-up way of attaching it to a pipe. This is a photo from my previous post about having a blacksmith make a pipe that fit as snugly as possible into the adapter. Without the "telescope" feature welded on to the end of the pipe, which couldn't be any larger and still fit into the Ridgeline Mount, the set screw would have needed to be screwed in much further, with more ability for the pipe to loosen in a high wind.

Hopefully the dish won't fall off again. I've tightened the screw as much as I could.