Hypnos: Epilogue

Hypnos - In Greek Mythology, the personification of sleep (By user:shakko (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons)
Hypnos – In Greek Mythology, the personification of sleep
(By user:shakko (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons)

Last night was sleep study number two. If you’re just tuning in, you can read about night one and the morning after here and here, respectively. The point of last night’s study was to test my breathing on the CPAP machine. For you laymen out there, CPAP stands for Continuous Positive Airway Pressure. Essentially, when the wearer inhales, the CPAP machine assists by forcing an amount of pressure and air into the airway, thereby preventing apnea-or more specifically in my case Obstructive Sleep Apnea. When a patient experiences OSA, his/her airway collapses, preventing oxygen from traveling to its natural habitat inside the human body, the lungs-and ultimately the blood and other organs. Hypoxemia (lack of oxygen) can effect the human body in numerous ways, including but not limited to sleep deprivation, fatigue, weight gain, seizures, heart disease, organ failure, and death. To name a few.

I went to the hospital last night expecting the same as before, electrodes and wires and sticky things stuck all over and around my body. I was fitted with these contrivances by an all too giddy therapist, taking a shot in the dark here by assuming she’s with respiratory. While attaching all these wires and whatnot, she explained the benefits and importance of using a CPAP machine when one has OSA. She described the mask to me, how it works (of this I was already vaguely familiar as my son Robot Boy is ventilator dependent). The CPAP machine I’ll use is much smaller and less complex than his vent, and I will only require it during sleep. RB is on CPAP mode during the day, but he is on the rate at night, meaning the ventilator is giving him breaths instead of simply giving him a small amount of pressure support.

After being fitted with all these niceties (used with extreme sarcasm) and taking my sleepy time medicine, I lay on my back -per the instructions of the overly giddy Paula Dean-esque therapist. It wasn’t long before I fell asleep. First there were some exercises to perform. “Turn your eyes to the left and the right,” Paula Dean said over a monitor. “Leave your eyes open for thirty seconds.” This is more difficult than it seems. “Open your mouth for ten seconds.” Breathing (and talking) while wearing the CPAP mask with the machine on is quite strenuous. Imagine having extra air pushed into your lungs while you inhale to say, ” Yes”, “That’s comfortable enough”, and “I have to go to the bathroom.” That is what’s happening.

I know I was in REM sleep for a while before I started to drown. I was underwater, a whale-shark with its gaping maw inhaling seawater instead of oxygen. My mouth was open, and I was gasping for air, but with the CPAP machine administering positive pressure, breathing through my mouth became arduous. I was suffocating. My brain told me to remove the pulse/ox on my finger to call the therapist. I did, or rather dreamed I did. Twice. Before finally waking up, chugging air down my partially collapsed airway against the positive pressure that was, at the time, less of a help and more of a hindrance.

I tore the pulse/ox from my left index finger as the therapist was coming in the door. She explained she should increase the pressure. I agreed. The thought of having more air in my lungs was splendid. Paula Dean adjusted the machine, and I lay back down, trying to recover and relax. As a lifelong insomniac, it’s not a simple task for me to wake and fall back to sleep on a dime. So for about an hour I lay there with my eyes closed trying to sleep and trying not to concentrate on the air being forced up my nose.

My back was hurting. I turned my legs to the left with my torso straight. Paula Dean came back in. “What’s the matter, darling? You’ve been awake a while.” “My back hurts.” “I thought it was your back. Do you want to lay on your side?” I said yes, and turned onto my left side with my legs pulled up. I had to pee, but I didn’t want to with all those attachments. Hoping I could ignore the need, and everything else involved, I closed my eyes hoping for more sleep.

The new position meant the mask shifted, and I had a strange farting noise resonating off my cheek and into my right ear. I adjusted my face, and the farting stopped, but it was followed by a leak of cold air that, when blowing across my face, aggravated an old cheek bone injury I’d incurred several years ago when I fell flat on my face, knocking myself unconscious. This went on for another length of time before I decided to try to adjust the mask. I did finally and closed my eyes trying to sleep again.

The sound of the machine, with its pressure forcing air into the mask, sounded like ambient ocean background noise. I imagined waves coming onto the beach and sweeping back out again. I imagined torrents crashing into high rock walls. Nothing made a difference. After however long, Paula Dean came back into the room and asked what was going on again. I admitted I had to pee. She obliged, but all the wires had to come with. After taking one of the most careful pees of my life, I returned to bed. I decided to lie on my back, assuming the corpse pose.

Corpse Pose via Yoga Journal (http://www.yogajournal.com/poses/482)
Corpse Pose via Yoga Journal (http://www.yogajournal.com/poses/482)

It worked. After just a few minutes, I fell back to sleep. I dreamed odd and vibrant dreams for about three hours before Paula Dean came in to wake me. “I let you sleep an hour later than usual since you were finally sleeping so good.” I stayed in a deep REM (rapid eye movement) sleep for over an hour. “That’s a really long time!” exclaimed Paula Dean.

After brushing my teeth, using the bathroom yet again, and  filling out some paperwork, I was escorted outside to the parking lot. I said goodbye to Paula Dean and went to my car. I rolled down the windows and turned on the windshield wipers to remove the overnight condensation. I plugged my cell phone into the charger and checked Facebook (priorities!), and then I turned on the radio. Low Rider was playing. I raised the volume to an unacceptable decibal level, put on my eye patch, and drove home.

Low Rider written by Charles Miller and the band War and appearing on their 1975 album Why Can’t We Be Friends? (Wikipedia http://en.wikipedia.org/wiki/Low_Rider)

 

The Kindness of Strangers

“I have always depended on the kindness of strangers.” 
 Tennessee Williams, A Streetcar Named Desire

Not always. But most certainly in the last ten months, and sometimes from the most unexpected of people.

Tonight my husband and I had our night out, when my mom stays at the hospital and we go out for a meal together. For Christmas, most of our family and friends gifted us with restaurant gift cards. Probably assuming we needed a break from hospital food, and boy are they correct. For tonight’s date, we chose from one of the restaurants near home. A newish establishment, to us anyway, having been away for nearly the last year. I would like to paraphrase our initial conversation with our waitress:

Waitress: “Is this your first time here?”

My husband and I, in unison: “At this location.”

Waitress: “Do you live around here?”

Us: “Yes.”

Waitress, in a teasing tone: “We’ve been here for a year now, why are you just coming to see us now?”

Me: “We spend a lot of time in New Orleans.”

Waitress: “Do you work in the city?”

My husband: “In St. Bernard.”

Me: “Also our son’s been in Children’s for a while.”

Waitress: “Oh, my daughter was in Children’s last March. How long has he been there?”

Us, again in unison: “Since last March.”

Of course, like most people who don’t know, she was surprised to learn we’ve been living at Children’s for the last ten months. She commented that her daughter was in the hospital for a week and how it was a terrible experience just seeing her baby suffer and being away from home. She empathized with us and said she didn’t know how we’ve been surviving for almost a year.

We talked for several minutes, mostly she and I. I’ve discovered as I get older, I not only am becoming my mother in appearance, but I have adopted her ease in engaging in conversation with complete strangers. The waitress and I discovered we’d both had bad experiences at a local hospital through which our pediatricians work, and we both decided Children’s Hospital was the better choice when our children had to revisit the emergency room. Coincidentally, our kids are the same age. After our conversation, she took our order and left the table.

Our appetizer came, and then our meals. The waitress refilled our drinks and asked if everything was satisfactory. I noticed her friendliness with the table beside ours, and I smiled. I’ve worked in food service. I’ve waited tables. It’s not glamorous, it certainly won’t make you rich, and many customers are, quite frankly, assholes.

Later as we were finishing our meal, the waitress returned and asked again how things were going. We talked a little more about our kids’ health conditions, and she revealed her daughter has had several surgeries since she was just one year old. The waitress said something then to which I completely relate. She said she asks herself why is her child sick when so many others are healthy. She said she blames herself, that she feels like she’s done something wrong. I agreed with her that I felt the same way. I explained to her that I’d just been telling my husband two days ago how I felt, and that I felt responsible for RB’s illness. Tonight he said the same thing to both of us that he said the other night to me, “Some things just happen. You can’t prevent things like that.”

He’s right, of course. But I felt emancipated in that moment. It was freeing to hear another woman, another mother, admit her feelings to me that way. That her feelings were the same as mine, without my having mentioned it first.

Not only was our waitress kind, friendly, and empathetic to our situation with RB, she must have talked to her manager about us, because our appetizer was comped by the restaurant. “Because we deserve a break,” the waitress said.

It was a touching and moving experience. But tonight has certainly not been the first time a stranger showed us kindness during these difficult times. Besides all the people mentioned in my previous post Just Another Year in Review, and those who helped us whom I haven’t mentioned because there were so many I would have to sit down and make a detailed list, there have been other incidents like tonight where a complete stranger has reached out to us.

About two weeks ago, I decided it was time for a haircut. I went to a local economy salon (and got a surprisingly great haircut, by the way!). I described to the stylist what I wanted, that I wanted it as short as possible where I could let the curls take over and still look decent when I didn’t have time to prime and prep myself. She suggested using a flat iron. I explained to her that I have one, and then I explained why I needed a  more feasible and convenient haircut. She asked a few questions about RB’s condition and his age. I answered her questions, and then she put down all of her tools and said a prayer aloud for God to bless RB and to heal him. Although I’m not overtly religious, I bowed my head out of respect for this stranger and her intention of doing something beneficial for my son and my family. It was moving. I believe in a higher power, and although I don’t follow my Catholic religion or rituals, I feel I am a spiritual person, and I respect anyone who believes in a God-or whatever word you’d like to insert here to describe Him, Her, It-that is supposed to promote peace and love and respect for our fellow humans. (Mind you, I don’t always have love and respect for my fellow humans, but I’m trying. I really am.)

Had she been Hindu or Buddhist or of any religion which teaches inner peace and love, I would have still bowed my head to her prayer. I don’t adhere to any one religion. I don’t believe it’s what God-insert your own name for your entity of choice here-would want. I don’t believe we are meant to fight each other over whose spiritual being is better.

“I watched the glee while your kings and queens fought for ten decades for the Gods they made.” Sympathy for the Devil, Rolling Stones, (Jagger, Richards)

If you know the song, you will get the reference. But I digress…

The point of the post is to commemorate these strangers who have added hope to our lives and have made this most difficult of situations just a little easier to endure. When we got home, there was this card waiting for us:

Image
A Thank You/Get Well card from the Radiation Oncology Team at Touro Hospital, personally signed by the doctors, nurses, and technicians.

Pressure

I get about one day a week off from my nearly 24/7 duties at Children’s Hospital. (If you’re just joining us, you can read about all that here.) This day is Friday, when my mom comes to stay with Robot Boy so I can go home, have a real dinner with my husband, decompress, and sleep. My mom works most Fridays, and she is wonderful enough to come after work and sleep at the hospital. Well, I shouldn’t really say “sleep at the hospital” because anyone whose ever been in a hospital or stayed with a loved one in a hospital knows you don’t sleep. Not more than an hour or so at a time, anyway.

It’s suffice to say these evenings I get away from the hospital are sacrosanct. I do my best to get home in enough time to go out to dinner with my husband and at least spend some time with him before he has to go to bed, as he works Saturdays usually. My home is approximately an hour and a half from the hospital, depending on traffic. The drive is hardly bothersome under normal conditions. For the last five years, I’ve had an hour commute to and from work-sometimes before and after working 12+ hours. I don’t mind driving, as long as the traffic is moving and there aren’t very many fucking assholes inconsiderate drivers on the road. I turn up the radio and exercise my vocal chords.

I sound nothing like Gonzo while singing this medley.

As I’ve said, under normal circumstances, I don’t mind the drive. However today, today my decisions led to me into very unusual driving conditions for my Friday night of freedom. My mom didn’t work this Friday, and she was at the hospital earlier than usual. Instead of leaving the hospital shortly after she arrived, I chose to stay and visit a while. I also have a terrible time tearing myself away from RB. Especially on nights like tonight, when he was watching me pack my bag, knowing that I was leaving. Not that he doesn’t love his grandma. He is very excited when she visits, but Mom is the safety net. Mom is there to make sure nothing goes awry. And also Mom knows-or thinks she knows-exactly what he wants most of the time.

I don’t regret my decision to stay, but I was less than pleased to be stuck in the horrendous traffic which accumulated at the precise moment I left the hospital’s parking lot. I made the unwise decision to leave at exactly 5p.m. on a Friday night. Oh and also on the night of a Hornets game. I sat on the same street for no less than 30 minutes. Someone in a black Yukon that’s license number I did not memorize for use in future voodoo ceremonies nearly caused an accident by purposely skirting around me while I was clearing changing lanes to avoid an 18-wheeler. I hardly berated the driver before he/she sped away.

Photo c/o Microsoft Office Free Clipart

I finally made it to the interstate, only to discover the traffic was almost as bad. With my bladder’s fluid gauge on full, I approached the High Rise, which any native knows is another traffic nightmare. At any rate, I finally got through the city and crossed Lake Pontchartrain en route to my home.

I exited as soon as possible and hit a gas station to fill up and utilize their surprisingly clean restrooms. I bought an enormous coffee (and a six-pack) and returned to the road. Instead of heading back to the interstate, I remained on the highway, which proved to be an unfortunate decision since everyone else in the state also decided to do the same thing on the same road. I was stuck in more traffic. But, with an empty bladder, a serious caffeine high, and good music, my two and a half hours in snarling traffic already seemed much less unpleasant, and at the exact moment I was contemplating driving through servitudes and on private property, the Muses graced me with a rather fitting song on the radio. . .

This song describes my entire life right now.”Pressure pushing down on me/Pressing down on you/No man asked for/Under pressure /That burns a building down/Splits a family in two/Puts people on streets.”

I, of course, recognized the fortuity. As I began to sing (both David Bowie and Freddie Mercury’s parts in perfect pitch, I might add), my foul mood was interrupted by tolerance and stoicism. What importance really, in the grande scheme of things (if there is one) holds traffic? I felt most uplifted: “Pray tomorrow gets me higher, high, high!”

Perhaps it was the music, or my utter madness, or the realization that there is no use being upset when you can grin and enjoy a major caffeine rush, or perhaps it was all these things, but I was wearing a smile and feeling so much better. “Cause love’s such an old-fashioned word/And love dares you to care for/The people on the edge of the Night/And love dares you to change our way of/Caring about ourselves.”

When the song ended, I felt like I needed a decent follow-up. You can’t just come down off a high like that. With my iPod on shuffle, I skipped the next two songs until I found a great song to accompany the first.

This is the cutest video ever.

“That time will come/One day you’ll see/When we can all be  friends.”

This interestingly unrelated piece of free clipart c/o none other than Microsoft Office

Under Pressure was written and performed by Queen & David Bowie and appeared on Queen’s 1982 album Hot Space.

The Miracle was written and performed by Queen and appeared on their 1989 album of the same name. The four boys from the video are Paul Howard as Brian May, James Currie as John Deacon, Adam Gladdish as Roger Taylor, and Ross McCall as Freddie Mercury.

Bohemian Rhapsody was written by Freddie Mercury and performed by Queen. It appeared on their 1975 album A Night at the Opera (titled after the Marx Brothers’ movie of the same name).

The Muppets were created by Jim Henson and currently belong to The Walt Disney Company.

Terror-ific Tales


Happy Halloween! The most wonderful day of the year. It’s almost sad the Halloween season has come to an end. (Well, it doesn’t really have to end, does it? Some of us prefer to be delightfully frightful all the time.)

Started the afternoon with the original shock rocker, the wonderfully horrifying and deliciously frightening Mr. Alice Cooper on the iPod. So glad he’s still touring because maybe one day I’ll get to see him live. I’m keeping the nightmare alive.

Unfortunately, we’re confined to the hospital room today, but we’re satisfying the spirits with some Tim Burton classics and enjoying the decorations.

I’m working on another scary story to share tonight. You can read more about it here. (P.S. The frightful fun isn’t going to end just because Halloween has passed. I’m going to continue to share my own and accept your stories. >;8} )

But aside from sharing my scary stories with everyone, I’d like to share some unnerving Halloween entertainment with you. Some of my favorite books and haunting tales.

1) Anything by Poe. Really. Just anything. But if you’d like something more specific, some of my favorites:

– Premature Burial. I had this story on tape (yes, tape), and hearing it read was way more terrifying than reading it. This story is scary stuff.

– Masque of the Red Death. “There was much of the beautiful, much of the wanton, much of the bizarre, something of the terrible, and not a little of that which might have excited disgust.” Enough said.

-The Tell Tale Heart. In case you’re not familiar with this story, it involves murder, severe anxiety, and pulling up a few floor boards.

-The Black Cat. One of my favorites as a kid. I’ve always loved cats. Apparently, Poe’s characters didn’t, but they loved walling or holing people inside of things.

-The Pit and the Pendulum. What’s scarier than the Spanish Inquisition?

-The Raven. A classic. Needs no explanation.

2) Stephen King. Same as Poe. Just about anything the King of Horror has produced will induce fear. But again, I’ll share some of my favorites.

-Salem’s Lot. What? Vampires are really nightmarish creatures that want you to die in a horrible manner or else turn you into a demon-like monster like themselves? No sparkles here. Scary as hell.

-Pet Sematary. If Fluffy or Boo Boo kicks the bucket, just let them go. Seriously. You don’t want to know the alternative.

-Misery. Because being a writer isn’t terrifying enough.

-Gerald’s Game. A good example of why bondage is not a good idea in a secluded setting.

-Night Shift. Collection of short stories including The Lawnmower Man, Jerusalem’s Lot, Trucks, and Children of the Corn.

I could go on forever . . . Or at least for several hours or maybe a day.

3) Samuel Taylor Coleridge

-The Rime of the Ancient Mariner. If you think this tale is just a bunch of hooey you learned in 12th grade lit class, think again. This poem involves sailors lost at sea, death, a curse, a ghostly vessel manned by a nightmarish woman (“Life-in-Death, was she”) and Death, and living corpses.

“They groaned, they stirred, they all uprose,
Nor spake, nor moved their eyes;
It had been strange, even in a dream,
To have seen those dead men rise.” – Samuel Taylor Coleridge The Rime of the Ancient Mariner

“The helmsman steered, the ship moved on;
Yet never a breeze up blew;
The mariners all ‘gan work the ropes,
Where they were wont to do;
They raised their limbs like lifeless tools –
We were a ghastly crew.” – Samuel Taylor Coleridge The Rime of the Ancient Mariner

4) Mary Shelley

-Frankenstein. I love this story. Forget everything you saw in a Universal Movie when you read it. It’s chilling, sinister, and moving.

There are so many more wonderfully chilling stories and novels available. This is a terribly short list. But it’s a start. Happy haunting boys and ghouls!

“It Finally Happened!”

I don’t remember a lot from the past. In the last couple of years I’ve developed this frustrating memory problem that’s hindered my recognition. But there are some things which I can recall in vivid detail.

One of those things is sitting in my childhood friends’ living room and watching this video, as mere adolescents emulating the silliness our favorite band’s members were exhibiting. Yes, we were Queen fans even then. This single was released in March 1991. I was eleven.

It was no wonder why it appealed to us then, what with Freddie Mercury’s Mad Hatter attire, John Deacon’s jester’s hat, Roger Taylor with a functioning tea kettle on his head, and Brian May’s enormous beak and penguinesque tuxedo. And, don’t forget the actual penguins.

The making of “I’m Going Slightly Mad” video-Queen

For sure at the time it was funny and cute to us, and we were enthralled by the song as much as the video.

But Freddie passed away later that same year, and it wasn’t until some years later that I was able to understand and appreciate an undertone in this video of which I was before unaware. Freddie’s heavy makeup and the video’s being shot in black in white concealed how ill he really was. As I got older and my appreciation for these artists grew, I learned that Innuendo, off which this song was released as a single, was Queen’s last studio album during Freddie’s life, having been released only ten months prior to his death.

Now back to the video, a little back story about myself, and why this seemingly silly nonsense is so important to me. As I’ve mentioned, I recall seeing this video with the two best friends I had growing up. We lived across the street, and we knew each other as far back as we can remember. They are twins, and I was a single child. But I didn’t long for companionship because we were always together. Except when we were in school and those annoying times when our parents forced us to go inside for sleep.

The Girls

We played outside until it got dark, and sometimes even after that as long as we were in the front or back yard. I had a turntable and a bunch of my parents’ old records and I’d record them to a tape (Shh! Don’t tell. We didn’t know it was piracy back then.) I had a portable cassette player, and we’d listen to music and run around outside until our parents felt we were calm enough to re-enter the house.

Anyway, we listened to a lot of classic rock (still do), and Queen was on the playlist a lot. We had a plush toy named Freddie Flamingo, and he loved to dance to “Don’t Stop Me Now.” I even had the original vinyl Jazz album with all the naked ladies on the inside jacket, most of whom were not fat bottomed, by the way.

One memory I have is of me and my friend, my very dear friend, running amok in my back yard and listening to “You’re My Best Friend.” My friend stopped running-we were literally running-and said, “Donnell, you’re my best friend.” I thanked her and said she was mine, too, and we got back to the business at hand. There’s a reason whenever I listen to A Night at the Opera I skip this song. Even though I still cry all the way through “’39.”

In our early twenties, my dear friend, my best friend, passed away. Her life had gone in a different direction than mine, and I’d watched her become someone I didn’t know. But she’d rediscovered herself, and we were finally getting reacquainted. I spoke to her on either a Sunday or Monday. As I’ve said, my memory is not what it once was. I was visiting my mom, and I asked her to come over. She declined because she didn’t want to leave her grandmother, who was ill. Later that week, my friend went to sleep and suffered a grand mal seizure. If ever death was a thief in the night, it was that night.

“Whenever this world is cruel to me/I got you to help me forgive.” – “You’re My Best Friend” John Deacon, Queen

I want to show you all more photos of my friends, of us together, but in 2005 Hurricane Katrina obliterated my home town. She took my home and with it all the photos and memories I had of my dear friend. The only ones I have now were sent to me by others who were able to salvage their own photos.

The aforementioned is only one part of why this video and Queen’s music in general is so special to me. A big part. But only a part.

I wrote about Innuendo being released only months before Freddie’s passing, and this video being made when he was quite ill. His health was declining, yet he continued to work and create amazing music alongside his band mates.

What I like most, though, is how happy Freddie looks in this video. He looks like he’s having a lot of fun. I find it such an inspiring attribute, being so joyous and knowing he was terminal. It’s something I hang on to in this time of my life, facing the worst challenge ever and knowing it very well might end tragically. I find inspiration in Freddie’s ability to laugh during that time of his life, the months leading up to the end of his life.

However, “I’m Going Slightly Mad” isn’t the only song on Innuendo I find uplifting. There are several, but one that I find more so than others is the song “Don’t Try So Hard.” This song is profound to me-thinking of Freddie writing it at the end of his life, and knowing it. I find comfort in the lyrics, almost the kind you feel receiving guidance from an elder. Someone who’s been down a road on which you hope to embark, artistically I mean. Except that I’m no musician. The song is one I go to when I feel like I’m running on a treadmill of rejection and literary atrophy. It also helps me focus on what is important, even when I feel
overwhelmed. I’d like to share the lyrics now.

“Don’t Try So Hard” Written by Freddie Mercury and Queen from the Innuendo album released in 1991. Lyrics c/o Sing365.com

Of course reading it is not the same as hearing it, which you can do this way QueenOnline.com or by visiting iTunes or any other place, like an actual record store-if they actually exist anymore. I wouldn’t know because the internet enables me to foster my borderline agoraphobia.

Speaking of using the internet, why not take a click on over to The Mercury Phoenix Trust where you can purchase cool merchandise or donate to help the fight against AIDS worldwide. I’m thinking of our next Freddie for a Day activity. This was last year’s.

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Doodles