The Donald Made Them Do It

The Secular Spectrum: The Donald Made Them Do It

We've been watching the Republican primary debates. Or, should I say, we were watching the debates, since it looks like Trump will nix any more.

The last one, alas, featured no references to genitalia. And speaking of dicks, it appears that the Republican establishment won't be able to stop the hate-spewing vulgarian that is Donald Trump after Tuesday's sweeping primary victories.

But what could've laid the groundwork for the so-called party of Lincoln to go down this ugly path. Could it have been the race-baiting rhetoric of the party for the last fifty years?

SfMCR: The final battle to speak

In my coma-dream, suctioning was represented as being immersed in a tank filled with science fiction-inspired oxygen-permeated gel, which I could barely suck into my airways. Once awake, it felt like my lungs were being sucked out with a vacuum. Still, the plugs in my lungs were getting so bad that I kept having to give in and ask to be suctioned.

But suffering through the waterboarding-like suctioning wasn't the worst travail I was facing.

The morning after my breathing crisis caused by the plugs (see SfMCR: Struggling to breathe because of my trach), Ricardo came to my bed and said, "We're going to remove your speaking valve."

As if a dam had burst, tears instantly poured forth. "Please don't." I interpreted that as meaning they were going to remove it permanently, silencing me once again. "I need it!"

"But we have to. We have no choice. The valve is what's causing the plugs to form."*

"Isn't there something else we can do? I have to be able to speak," I sniffled.

"If we keep it in, it's going to delay your recovery. Don't you want to get better?"

I paused to think of a way out of this. Suddenly, a solution popped into my mind, "What if I let you take it out between visits?" My loved ones visited me in regular shifts, and that's when I most needed to communicate well the most.

He looked at me a minute, and said, "We can try that." Ricardo didn't look enthused. "But if you continue with the plugs, we're going to have to take it out."

And thus, when my visitors arrived, I would ring for an RT to reinsert my Passy-Muir valve, and when they left, I would signal again for the valve to be removed.

In between, I had to do my best to communicate with medical personnel using leak talking, which is as difficult to understand as it is to produce.

This was complicated by my warp-speed speaking style, which is related to my ADHD. Try as I might, I just couldn't force myself to slow down my speech or break my comments into shorter utterances. The best I could manage was to reduce the speed to subsonic.

This was a particular problem when trying to communicate with physical and occupational therapists because doing the exercises sapped me of precious breath.

Still, it was worth it to be able to continue speaking normally with my loved ones.

I was on powerful (and painful) intravenous antibiotics. Every time the younger nurse administered it to me, I had to fight back tears from the searing pain. The older, more experienced, nurse knew how to slowly feed the antibiotic into the catheter so it didn't hurt as badly.

But the excruciating injections paid off. Before long, I tested free of MRSA, and I wasn't an untouchable anymore.

A couple of weeks later, I no longer needed the speaking valve. Ricardo finally removed my trach.

As he was taking it out, Ricardo said he had known I was ready to have it out for some time. Later that day, Joseph broke into a big smile when he saw me without the trach. He told me that he could always tell when patients are ready for decannulation, and he had known that I was from the start. That's why, when it looked like he would be leaving Country Villa Sheraton, he warned me of Ricardo's excessive caution and advised to keep pushing for further weaning.

After my trach was disconnected from the ventilator. They fed me supplemental oxygen as a precaution. 

If I had been weaned faster, I wouldn't have needed the speaking valve for nearly as long, and most of this frustrating saga never would've occurred.**

After I had been red-capped, in preparation for decannulation.

*As I said in my last post, the folks at Passy-Muir, makers of the talking and eating valve, tell me that if my ventilator had been properly humidified, it would've prevented the formation of plugs. I will delve further into this subject in the next installment in this Scenes from My Coma Recovery series. Here is Part One, Part Two, Part Three, and a related SfMCR: Gaining the Power of the Pen.

**On the other hand, I also wouldn't have sold the essay I wrote about the drama of repeatedly losing my ability to speak. "Voiceless" will appear in Kaleidoscope, a semi-annual online literary magazine about disability, in either in July of 2017 or January, 2018. I will post a link to the essay when it comes out, so watch this space...eventually.

Enjoying a tater tot after the decannulation. I was wearing a shirt because that afternoon I had gone on a walk outside the nursing home.

A rocky recovery at a stony park

This time, I was strong enough for Keith not to spot me before I reached the steeper and slipperier section of the path to the wind cave.

Tumblrs: Rocky Peak Park

On our second visit to the stunning and strenuous Rocky Peak Park, we made like our Cro-Magnon ancestors by dining in a rock shelter. Just as they would've eaten their bagels. The rainstorm we were trying to avoid by hiking on Saturday

caught us unprepared on Saturday.

Typical Mother Nature, raining on our recovery parade.

Rocky Peak is extremely steep and the path is sometimes treacherous. It's so difficult that it's even hard on Keith's knees.

Still, I found that I was able to ascend the park's heights more easily than I could just a month prior. It was gratifying to note that my hard work at rehabbing was paying off.

After I had basked in the freedom of having the wind cave to ourselves by exploring the depths I could reach safely (see gif below), we stopped for a picnic. As it turned out, we had lucked upon an open rock shelter just before it began to rain.

It was a good thing we had left the cave because the path out of it would've become a Slip'N Slide. Dry, if not warm, we waited out the rain in our open-plan cave.

Descending on our first trip in February.

Unfortunately, to avoid the slippery slope of descended the path in the mud, we were forced to head back after our picnic, instead of heading deeper into to park, as we had planned. After all, last time, I got cocky and fell down on the descent, skinning my knee. And the ground was mostly dry.

But I'm sure the wildflowers already peppering the park appreciated the precipitation (say that ten times fast.)

See Tumblrs for more pics, including the wildflowers.

Admiring one of the natural rock sculptures at the park last time.

And here I was struggling to my feet inside the wind cave on this trip. It's a measure of how difficult my recovery has been--from the strokes, coma, and the previous dermatomyositis muscle damage--that even the ability to stand up from the ground using only a low rock as leverage is still something to celebrate.

Caught in the Web of @theist Dating

The Secular Spectrum: Caught in the Web of @theist Dating

When I entered the Jewish dating scene, I was thinking that Jews would be more likely to share some of my personal attributes, like humor and liberalism, But I suppose I was also trying to connect to a culture I had only tenuous ties to.

I was sadly mistaken.

In fact, some Jews denied that I even belonged in the "club" because I didn't practice Judaism. There were a number of guys I could tell were interested in me, but were put off by my preemptive announcement of my atheism.

I was trying to screen out guys who would be put off by my beliefs.

It worked all too well.

SfMCR: Struggling to breathe because of my trach

At least my dexterity had improved enough for me to suction the plugs from my mouth myself.

After all of the dramas I had suffered in my struggle to speak, you would think I had finally come to the end of my speech travails when Keith bought me a replacement for the talking and eating valve--aka Passy-Muir valve--which had been carelessly thrown away with my used trach.

You would be wrong.

Within a week or so after the replacement speaking valve was put in, I came down with pneumonia. Not just any pneumonia, but the dreaded MRSA--Methicillin-resistant Staphylococcus aureus. That meant that I was Typhoid Stephanie. All visitors had to dawn sterile gowns and masks before seeing me.

Even worse, I was barred from the "gym," as the physical therapy room was called. I had no access to the exercise equipment that would help strengthen my coma-weakened muscles. The PTs went

The balloon was there for my physical therapy.

into my room to give me the limited therapy they could provide there. I had to leave the nursing home at the end of the next month or lose my Kaiser coverage, and I still couldn't walk.

The clock was ticking. But that was far from all.

The phlegm from the pneumonia was forming into thick plugs, which clogged my breathing tube. Trachs make it harder for you to cough up phlegm.Thus, it was actually impairing my ability to breathe. The irony is that it was becoming increasingly clear that I didn't need the trach anymore (a fact Ricardo admitted when he finally removed my trach a month later).

Joseph, a big, bald-pated Jamaican respiratory therapist explained in his sing-song Caribbean lilt, "It's your your speaking valve, my dear. The valve dries out the mucus, making it form into plugs."*

But I wasn't about to give up my hard-won ability to talk.

I had already grown to trust Joseph, who prided himself on how many patients he had talked through breathing crises. Being a skeptic, I initially doubted his self-assessment until I saw it for myself (and with myself). He calmly talked me through more than one such crisis, as he did with Vilma, the fellow coma survivor I shared my room with.

One day, the plugs just wouldn't stop coming. Some of them were huge, clogging the suction tube so badly that Joseph had to open it up to remove the plugs with saline and swabs. (Um, maybe I should've warned you that this post isn't for the squeamish. Sorry!) They were tinged brown because my trach had be suctioned so frequently that my throat had become irritated. (I know, blech. Sorry again!)

And speaking of irritation, Joseph spent his entire shift shuttling back to my bed to suction me yet again. All day, I continually hacked as deeply as I could to bring up the plugs. Sometimes they would shoot out of my mouth like spitballs. We should've set up targets.

As much as I could, I tried to clear them myself by coughing and by suctioning my mouth and upper throat with a long plastic wand (see above photo). I hated having my trach suctioned because it was uncomfortable and little scary--it felt like the RT was sucking my breath away. It was a bit like being waterboarded, actually, though the only thing they're trying to extract from me was phlegm.

Joseph was reluctant to suction the trach too often because of the increasing throat abrasion. He therefore encouraged me to cough them up myself when I could. My chest was beginning to feel like my ribs were boring their way through the skin. I was physically spent, yet every time I started to have trouble breathing, I had no choice but to begin hocking yet again.

At one point, even suctioning couldn't seem to clear my trach. I coughed and I coughed and I coughed some more until I was hyperventilating so much even the ventilator couldn't keep up. What's worse, since my awakening I had been plagued with frequent bouts of painful chest spasms, which coughing often triggered.Whenever my chest spasmed, my hyperventilation worsened.

Now I was scared. And the more nervous I got, the worse the hyperventilation became. Joseph had told me of a heartbreaking case in which he couldn't calm a panicked patient, who eventually died.

I wasn't panicking...yet. Still, the story was meant to illustrate the very real dangers of a breathing crisis.

But Joseph's soothing manner relaxed me. I focused on imagining a particularly peaceful scene with Keith at an ancient Greek ruin Sicily. As I calmed down, my breathing became more regular. With a several forceful coughs, I expelled the plug restricting my airway.

At the end of the day, with my last bit of physical reserves spent, I gave in and allowed them to remove my speaking valve before I went to bed.

But that still wasn't the end....

*The Passy-Muir people tell me that the plug problem could've been solved if the nursing home had only humidified the ventilator air. That makes sense. I'll get into that subject in my next installment of this SfMCR series. Here is Part One, Part Two, Part Three, and a related SfMCR: Gaining the Power of the Pen.

Born Free (of God)

The Secular Spectrum: Born Free (of God)

Though I was raised as an agnostic, when I was about 10, I began praying silently before bed:

Now I lay me down to sleep,I pray the Lord my soul to keep,If I should die before I wake,I pray the Lord my soul to take.

I must've picked it up from TV or the movies. The reason I was doing this wasn't because I had secretly become religious. I interpreted the prayer as a threat that God might kill you in your sleep if you didn't pray to him.

God was the boogeyman, the monster under my bed.

I also deeply feared Bloody Mary, which Dale McGowan amusingly recalls in his latest post. To me, both God and Bloody Mary were equivalent--demons to be feared. If God didn't get me, the ground might open up and Devil would suck me into the bowels of Hell.

Though I was a fearful child, I was able to shake this strange habit for a girl who would mouth the prayers she was forced to recite before lunch in school. (Both events happened when I lived in Birmingham, Alabama.)

One day, I thought, "This is silly. I don't even really believe in God. I should stop this."

I didn't gather up the courage right away, but eventually I stopped praying to the imaginary killer in the sky.

Walking with Joella's dog where coyotes pupped

Tumblrs: Conejo Valley Botanic Garden

The last time we went to the Conejo Valley Botanic Garden, in with Joella and her Australian terrier Sadie, in June, 2015, they were barred from the garden because coyotes had been spotted in the garden with their pups.

Luckily, there's a nice community park right outside the botanic garden. We eventually left them to rest while we walked through the botanic garden. Still, the highlight of the day was our picnic together, when we watched a family of juvenile squirrel frolicking and poking in and out of passageways under the concrete of a drainage ditch like Whack-a-Moles.

That was our second visit. The first was only the second time I had used my hiking sticks to climb stairs without rails--and these were much longer flights than those had been. Stairs have gotten so old hat for us now that Keith often doesn't even bother to take pictures of me climbing them. Sunday, while Joella walked up the ramp to the garden, I took the stairs.

That visit was also the first time that we left my wheelchair behind at a new garden while I was using the hiking sticks. I guess you could call it a leap of faith that I could do without it.

And now I've left the wheelchair behind for good.