Friday, February 26, 2016
It was a triumph when the nursing home speech therapist finally approved a talking and eating valve for me, also known as a Passy-Muir valve.
But less than a week after I started using the voice-giving valve, it was literally snatched away from me.
Every night in the nursing home, I was awoken for a blood test or to check my trach. One night, a respiratory therapist woke me up to change my trach, Afterwards, I went back to sleep. But when I awoke in the morning and tried to say something, I could barely make a croak.
I took a drink of apple juice and tried again.
Maybe it was congestion? I summoned Ricardo using the call button. When he arrived, I gasped out a request for a breathing treatment.
Afterward, I tried to cough up as much phlegm as I could.
Still, no sound came out beyond what I could eke out before I received the valve. I took another drink. Nada. So I pressed the call button.
"What is it again?" asked Ricardo.
"I can't talk," I told him.
He unhooked the tube leading into my trach. "Your speaking valve is missing! What happened?"
I shrugged. Then I remembered, "Last night someone...woke me up to...change my trach." I was doing my best to take breaths between words, but as usual, I wound up trying to say too much between breaths.
We immediately realized what had undoubtedly happened. The valve had been tossed into the trash with my old trach.
"Who did this?" Ricardo said, clearly pissed.
I shrugged as I shook my head, instinctively returning to the mime I had perfected when I could barely speak.
At first I hoped it might be possible to retrieve the valve, but it soon became clear that this was impossible.
My hard-won valve was now medical waste.
"Do you know how expensive those valves are?!" the incensed Ricardo exclaimed. "I'm going to find out who did this to you. This shouldn't have happened. Carelessness like this is unacceptable!" Ricardo was a pretty even-tempered person, and this was about as close to raging as he got.
"When can I get a new o...?"
"I'll have to check. We don't normally keep many of these in stock."
As it turned out, they didn't have another valve. When I asked the next day, Ricardo told me they were ordering a new one.
The next week, he said they had ordered it, but it hadn't arrived yet. The week after that, he said he would check into what the hold-up was.
Each day, the first time I saw Ricardo in the morning, I would ask him about the valve.
"I'm sorry, it's still not here," he would tell me after he had checked the storeroom.
Eventually, Keith found a company that sold Passy-Muir valves on Amazon. He paid for it out of his own pocket, including the rush shipping.
Finally, I had my voice back...again.
It wasn't long, however, before my valve was threatened yet again.
Here are the previous installments in this Scenes from My Coma Recovery series: Part One; Part Two; and a related SfMCR: Gaining the power of the pen.
Thursday, February 25, 2016
The Secular Spectrum: The Trumping of America
We've been watching the Republican primary debates. No, we're not masochists; we're just dedicated to the election process. Plus, it's fun to mock them.
Watching Donald Trump bluster and self-aggrandize as he spews vile prejudice, I'm amazed that anyone supports him.
But even more amazing is the fact that the Donald is enjoying so much evangelical support. Trump being Trump, his attempts at appealing to fundamentalists have been manifestly insincere.
He's the only person with a bigger ego than the all-knowing, omnipotent, supposed creator of the universe.
Perhaps, his Christian Right supporters are practiced at taking leaps of faith.
Wednesday, February 24, 2016
Tumblrs: Vasquez Rocks
The history of our walks/hikes at Vasquez Rocks can be told in the assistive devices I've employed. The first visit to Vasquez Rocks, on March 30, 2014, was also the first time I used the four-wheeled rollator Keith had bought for me on a rehab walk.
Keith didn't know that rollators aren't recommended for people who are just beginning to walk again. It was the only type of walker he could find in the drugstore for my four-hour tour of our home, on furlough from the nursing home.
He only needed to buy it in the first place because a bitchy physical therapist wouldn't allow me to check out a walker, as the PT helping me to walk had instructed me to do. But he was off duty, and I was at her mercy.
We learned why rollators aren't advisable when it slipped out from under me while I was trying to get to the toilet. I banged my head on the bowl, but wasn't hurt.
I think the PT on duty that Sunday wouldn't allow me to check a walker out, despite the fact that it was common practice, because she didn't approve of John Silva's methods. She had previously carped that I wasn't really walking, since he was initially supporting my weight as I walked.
The furlough was to work out any kinks in preparation for my pending release from the nursing home. As I've written about before, we had no choice because I would've lost my health coverage if I had stayed in Country Villa Sheraton past October 31.
So, instead of allowing me the use of a walker, she actually endangered me. She's lucky I wasn't injured.
But I was much stronger by March, 2014. We knew that my safer, two-wheeled walker would be all but useless at Vasquez Rocks. And since I was a lot more stable at this point, we decided to give the rollator another try.
|I coincidentally wore the same outfit on the second visit.|
Last Sunday, we went to Vasquez Rocks with Joella. She brought with her the identical hiking sticks we gave her for Christmas.
We again travelled along the Geology Trail. The narrow path, which Keith gave the tongue-in-cheek name, the Yawning Chasm of Death, was now a cinch for me.
And the hiking sticks allowed me to climb most of the way--up a steep slope--to the undulating stone walls I had only admired from afar (see Tumblrs). It was a bit like walking along the bottom of the Grand Canyon in miniature.
The hiking sticks continue to open up new avenues for me and my recovery.
|Yes, it was a steep as it looks.|
Friday, February 19, 2016
Griffith Park Observatory: Tumblrs
We had seen the intrepid hikers embarking on the steep path up the mountain toward the Griffith Park Observatory on our walks through Ferndell. We admired their determination, but knew I wasn't up to such a trek.
|A pic taken on our first walk through Ferndell on a rainy January weekend in 2015.|
Last Sunday, we finally decided I was probably strong enough to attempt the ascent. Our quest was complicated by the fact that we initially took the wrong path--we're both directionally-challenged. We therefore proved that I was strong enough to walk the tropical paradise of Ferndell and also hike to the observatory. I had been thinking that a walk to the observatory would make the lovely, but no longer challenging, Ferndell more of a work-out for me.
|Entering the trail back to Ferndell in March of 2015, as people walked along the trail to the Griffith Park Observatory.|
We finally reached the top, we weren't able to tour the refurbished observatory nearly as much as we wanted to. But it a good thing that Keith did his best to restrain my enthusiasm as we entered that famous building. (See Tumblrs for some pics taken inside, on the roof, and on the grounds. Bonus: Pics of the Hollywood sign--it's two icons in one!)
After our lunch at the Cafe at the End of the Universe--nice shout-out to one of my favorite authors!--we headed back down the mountain. We had barely started before my exhaustion flooded back. By the time we reached our car, I felt like I just might fall back into a coma from sheer exertion.
All in all, we hiked 3.7 steep miles. The hike was so hard that even Keith felt wiped out.
But we had reached a new pinnacle in my recovery.
|A section of the very long path up the mountain.|
Thursday, February 18, 2016
The Secular Spectrum: The Long Goodbye for an Atheist-Positive President
President Barack Obama is the first black president. But he also represents a less well known first.
Though President Obama is almost certainly a Christian, as I have fantasized (and absolutely not a Muslim), he is without a doubt the first president raised by a secular humanist.
Like I was.
It's no coincidence that he regularly mentions nonbelievers in the same breath as the faithful. He's called his mother, Stanley Ann Dunham "the last of the great secular humanists." And he's seen first-hand the deeply held values humanism can instill.
The Republican party doesn't have a corner on the values market.
I'm afraid that none of the candidates of either party will continue his practice of giving equal time to the godless.
And it may be a long time in this "exceptional" religious country before we see the same.
Wednesday, February 17, 2016
|Keith fanning me not with palm leaves, but a hospital whiteboard for patients (the heater was turned up too high in my room, and I was feeling stuffy). This was during my second bout of Legionnaires' disease, and he was there for me then, too.|
What a weird coincidence.
Keith had used one of the band-aids we had purchased in Sicily to cover the sores on my hands and arms to repair his glasses. What were the odds that David...or Michael--no, I already dated a Michael, how about Jonathan?...er, maybe Ricardo? would have made the same klugey repair?*
I loved the way Keith--did I say Keith?--I meant Ricardo, yes, Ricardo, gently kissed my eyelids or forehead. The way he barely made contact with the skin was both tender and somehow deeply erotic.
It was bizarre how much his body also resembled Keith's. But Ricardo had a full beard, while Keith had a goatee and moustache. I guess it was just my type.
How I looked forward to those kisses....
I marveled at how polite Ricardo was. "Thank you, sir" and "Thank you, Ma'am" were his refrain whenever someone else was in the room. I couldn't quite make out the other people said, but Ricardo's words, I heard loud and clear.
What a gentleman he was!
Ricardo would tell me at length his plans for us. We would go on an Alaskan cruise. Keith and I had loved looking at the calving icebergs as we flew over Greenland on our flight back from Sicily.
I guess Ricardo loved icebergs, too.
He also spoke of future trips to tour Latin American ruins like Machu Picchu. I had always wanted to see place like that. What fun it would be!
When the time came for him to leave, Ricardo would plant the gentlest of kisses on my forehead or eyelid, and say, "Remember, I will always love you, and I will never leave you."
And Keith hasn't.
Later, after my awakening, Keith explained that with all the equipment I was hooked up to, lines, tubes, and my trach, I didn't have much space left for him to kiss. He was also deathly afraid of hurting me. Thus the oh-so-gentle kisses.
Nonetheless, the emotion expressed was unmistakable.
I will always love Keith, too.
|The bouquet of a dozen long-stemmed roses that Keith gave me for Valentine's Day this year.|
Sunday, February 14, 2016
|David leering at Bathsheba as she wears the latest Renaissance fashions,|
The Secular Spectrum: A Valentine's Day Poem Massacre
Since it's nearly impossible to find Valentine's Day cards that aren't either sappy or stupid, I began a tradition of writing my own bad poetry for Keith.
Being a satirist, the poems contain hidden jokes and puns. The themes often grow from whatever is occupying our lives as I write it. Since I'm writing posts for the Secular Spectrum, the theme of this year's poem is absurd biblical stories.
Because of this, I decided to share the poem with SecSpec's readers. I've also challenged them to come up with their own bad biblical/romantic verse. And I'm inviting readers of this blog to join the fun.
Share your own biblical babble in the comments section!
And as a bonus, here is last year's Valentine's Day poem for Keith.
You’re Trending in My Heart
Follow me and I will follow you,O’ how you update my status!Befriend my heart,And my heart will never defriend yours.I like to be liked,And I like to like you.How your love makes my heart twitter,Your news feeds my soul.Share with me your love,And I will share with you everything.My laughs will be your laughs,My tears, you will cry too.Do not block me, my love,And my thoughts will always be with you.Only a person who truly loved me,Would share these sentiments too.
Thursday, February 11, 2016
|We've found a route that makes it easier for me to access the river near the waterfowl-rich area around the dam.|
The Los Angeles River is a running joke in LA. It conjures images of vast, graffiti-strewn stretches of concrete, with at most a trickle of water running through it. But here in Van Nuys, we're privileged to live near one of the few of natural-bottomed regions of the LA River. Here, birds flock next the the concrete ramparts of the Sepulveda Dam. Sunday, we watched a great blue heron, six great egrets, turkey vultures, and hundreds of American widgeons and Canada geese (see Tumblrs). And the birdwatching wasn't even as good as our last two walks there.
|A great blue heron, barely budge from its position when we returned from our walk.|
The attached Sepulveda Basin Wildlife Reserve was the first place Keith and I took a rehab walk. The second was the LA River, which is attached to the reserve. Keith used to have to roll me in my wheelchair most of the way through the reserve to get to the river.
We've found a shortcut to the river, so the last time Keith had to roll me part of the way was last year. We'll soon be returning the wheelchair (when I finally remember to make the call).
|Walking away from the wheelchair on our first walk at the LA River,|
|Birdwatching in my wheelchair, almost a year to the day before last Sunday's walk.|
Indeed, I've vowed that next time I'm going to try to walk all the way through the reserve to the LA River on my own two feet. It'll be two great tastes in one. And it will be all the sweeter because I will have done it on my own.
Here's a bonus pic of a juvenile osprey buzzing a great blue heron, who ducked (you would too) and let out a big squawk. The osprey later buzzed a great heron, who was no doubt equally pissed.
Wednesday, February 10, 2016
|This photo was taken weeks later, when I was being trained to sit up in a wheelchair for extended periods. The ball was for physical therapy.|
As hard as it was to produce comprehensible sound, at least I could speak again. My tracheostomy had accomplished what no person had ever managed to do before...it shut me up.
When a respiratory therapist checking my trach silenced this hard-won skill, I was devastated, as I detailed in my previous edition of Scenes from My Coma Recovery.
Four days after the surgery was completed, I left the hospital. In the meantime, we were able to secure a bed in the nursing home my mom had preferred to send me to in the first place, Country Villa Sheraton.
I was adamant that I didn't want to return to All Saints Healthcare because I felt they weren't gentle enough in their care of me. I had severely abraded skin around my private parts, a yeast infection, and a UTI. In my coma-dream, I eventually refused to be cleaned by my caregivers. But since that act of rebellion was all in my head, nothing changed.*
Country Villa had a brighter, cleaner look to it. I was excited about the better nursing home, which hadn't had any open beds when it came time for me to be transferred out of the hospital during my coma.
But mostly, I was anxious that Keith mention to someone that a respiratory therapist had prevented me from speaking. I had no idea what he had done, but I was desperate to regain my voice.
As I wrote about in the last SfMCR, Ricardo restored my voice by deflating the cuff that seals the area around the trach, keeping air from leaking around it like a dam. Trachs are often deliberately deflated to allow what is called leak talking. It's usually perfectly safe, as I had demonstrated the few days I had been doing it.
Though at that moment, Ricardo was my hero, later in the day, he turned into a villain. Before the end of his shift, he told me, "I'm going to reinflate your cuff now."
"Please don't!" I pleaded.
"What am I going to tell people when you have a complication?" said Ricardo. "You don't want to get me in trouble, do you?" He said it more playfully than defensively, but I was later warned of his excessive caution by another respiratory therapist I had grown to trust.
"Please don't!" I said again, crying piteously as he pulled the syringe from his pocket. "No..."
Ricardo plunged the syringe into the pillowy plastic bulb hanging from my trach. It inflated, and I could speak no more.
I continued to sob as he promised, "As soon as the speech therapist gives the okay, we're going to give you a speaking valve."
The next morning, when Ricardo came on his first rounds, I pointed to my trach and put my hands together in a gesture of begging prayer.
He restored my voice with a pull of a syringe. I broke out in a wide smile and said, "Thank you."
This cycle continued for several days until he finally stopped silencing me.
It was weeks before the speech therapist approved my talking and eating valve. But that only sparked new painful and frustrating dramas, as I continued to periodically lose my ability to speak.
*Keith doubts that All Saints was negligent or too rough in my personal care. He says that the CNAs had struggled to keep me clean due to my rampant diarrhea during my coma. I do admit that my skin has always been sensitive to abrasion, and that undoubtedly factored into my skin irritation. But I also remember hearing my mother muttering like a mantra, "Shithole. What a dump!" over and over again. Keith thinks this may have influenced my impression of All Saints. But if I had known I was in a Catholic nursing home (the name should've been a clue), I would've wanted to transfer anyway.
Tuesday, February 9, 2016
The Secular Spectrum: The Zika Humanitarian Challenge for the "People's Pope"
I have to admit that I had trouble keeping my eyes off the drama of the extremely disordered microcephalic son sitting next to his aging father, who had taken him to the idyllic Ferndell to enjoy the beauty and peace of this popular corner of Griffith Park.
We were out of sight of the father, but as I sipped my iced tea on that hot day, I kept sneaking glances at his son. I'm not proud of that, but I had never seen a microcephalic before. And his behavior was so strangely fascinating, in a heart-rending way. He kept davening his torso as he kicked his legs back and forth and moaned loudly.
Even if he didn't have the distinctively sloping head of a microcephalic, you would know there was something terribly wrong with him.
As we prepared to leave Ferndell, I sneaked one last glance at the pair. I noticed a wheelchair parked a few feet away. I felt sadness overwhelm me, as I imagined what pain his loving parents had gone through since his birth.
|A photo taken on the day we watched this heart-rending scene in Ferndell.|
It a tragedy that could be prevented by a simple policy change from the so-called people's pope, one that would prevent so much suffering of the poor on his home continent.
Friday, February 5, 2016
|Finding myself on a steep decline.|
Tumblr: Rocky Peak Park
You can always tell how much I like a new walking/hiking site by how many Tumblrs I post of it the first time.
I've wanted to hike Rocky Peak Park for a while. I had read about it in the LA Times blog, LA Walks. The article compared it to Vasquez Rocks, which we adore. But I was always scared off by the difficulty rating of 4 out of a possible 5. The distance was also too far--3.5 miles.
Well, I realized that the hike could be as far as we wanted, since you have to double back, anyway. As for the difficulty, I have been getting a lot stronger lately.
We decided to chance it.
When we arrived, we quickly realized that Charles Fleming wasn't kidding about the rating. It is
I can't wait to go back!
|A very rocky picnic.|
|Google Photos created this gif, It was so difficult for me to walk through that extremely narrow gap that Keith took a continuous stream of photos while I was doing it.|
Thursday, February 4, 2016
|Yes, that's my hand and my keychain Magic 8-Ball.|
Sure, my stubbornness has something to do with it--don't tell me I can't walk!--but knowing there's no one out there who's going to make things better makes me do it for myself.
I realize that believers find praying to God comforting. And they keep waiting and waiting for God to pick up the message.
I guess he screens his calls.
A famous large study of heart patients showed that patients who knew they were being prayed for actually did worse than those who weren't prayed for.
But like people relying on Magic 8-Balls, believers keep shaking that ball, waiting for it to say something other than...
ANSWER HAZY TRY AGAIN
They've all heard the canard that God helps those who help themselves--I wonder why that is?--but they still wait for the great big genie in the sky to make it better for them.
CONCENTRATE AND TRY AGAIN
But since I don't believe there's anyone up there, I know I have to rely on myself. My recovery won't happen on it's own.
IT IS CERTAIN
And there's a comfort in knowing that I have my fate in my own hands. The faithful are always excusing life's misfortunes by saying God works in mysterious ways.
BETTER NOT TELL YOU NOW
Well, I don't have some fickle deity deciding to give me yet another bout of Legionnaires' disease because he woke up on the wrong side of the cloud.
MY ANSWER IS NO
I slowly weaned off prednisone early last year , so I'm no longer as immune-suppressed as I was. (My methotrexate also has immunosuppressive properties, but it's not coincidental that I haven't had a bout of pneumonia since I went off prednisone in late January of 2015.)
IT IS CERTAIN
I'm continuing to exercise on the stationary bike six times a week and hike once a week, not to mention my physical therapy exercises. I keep escalating the difficulty of the hikes. Indeed, the hike this Monday at Rocky Peak Park was the hardest yet (post and Tumblr link are forthcoming).
When I was a toddler, I had a shoestring with some large beads. I would chew on the ends of the lace, so they were rather frayed. I couldn't get one of the beads on, and I was getting red in the face with frustration. My mother took it from me. She was about to string it on for me when I grabbed it back, and said, "Me do it!"
I'm still like that when I feel frustrated. But when I see myself climbing new heights, I can say,
"Me did it!"
Will I recover the rest of my physical abilities without recourse to a higher power?
Wednesday, February 3, 2016
|A little ruby-crowned kinglet at the LA County Arboretum seemed anxious about something, but not to whisper in our ears.|
Have you ever noticed that God always seems to tell people to do exactly what they wanted to do already?
It's almost as if people are confusing their own inner voice for God's.
The hospital chaplain's inner voice certainly didn't tell him to respect my and my loved ones' nonbelief.
I still can't believe that he would pray, "May you take the Lord's light into your heart and be healed," within earshot of my mother, after she told him we were atheists.
When my mother first told me of this, I could still hear the anger in her voice.
What "man of God" would say that in front of an atheist mother grieving over her dying atheist daughter?
Apparently, to him, nondenominational didn't mean he had to respect those with no faith at all.
- In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.
Not a miracle recovery, but a miracle of modern medicine
In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.
I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.
But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.