Waking Up in the Afternoon

By now you know that I have to take a bunch of pills throughout the day, all of which make me fall asleep.

Waking up in the afternoon is often more difficult than waking up in the morningtime. For example: today. Right now.

Coming out of my midday fog, I find myself in a cool, dark room on a hot, sunny day. I am emerging into a dreamlike reality, watching an obscure Youtube video that all too perfectly mimics my current mental state.

(I am not completely unconvinced that Lhasa de Sela isn’t one of my spirit guides.)

Here Lhasa is, lulling me out of my lull, singing my love-life story, so honestly and so sweetly, in my preferred 6/8 time signature.

Maybe I am still more dreaming than awake.

A low camera, never quite focusing on my beloved storyteller, pans the on-looking crowd dressed in scowls, judgmental half-smiles, and dark clothing. Nearing the end of the cameraman’s circle of judges is a photographer. Not looking too unlike myself before all the sun, she smiles more truthfully than the others and is the only one in the crowd who bothers to try to sing along. She manually advances her film. She appears to be shooting with what I swear is a Canon AE-1 , which just so happens to be my first and all-time favorite SLR, trumping even the modern day ultra-uber-DSLR’s.

This video is all too similar to something my brain might conjure.

It is hard for me to know where a dream ends and real life begins again, especially in the afternoons. Familiar music via Youtube usually helps bridge the gap.

 

Vignettes: Neurologist Check-up

In a good news/bad news situation, I always prefer to hear the bad first. So, this post isn’t necessarily written in chronological order. It’s OK. It doesn’t have to be. 

I always try to piggy-back my appointments in New York so that I don’t have to make multiple trips for singular appointments. Luck is usually on my side, but sometimes it just isn’t possible. Over the next five weeks, I have a series of three trips that I have to make for single purposes.

Last Monday was the first trip. A check-up with my neurologist. This is the first check-up I’ve had in nine months where I hadn’t had a nerve block just prior to the appointment. And hey, guess what? I still have CRPS.

I arrived to the appointment about 45 minutes early. Which meant I had to sit and wait. Which my leg hates. So, like a obstinate child, my leg decided to have a full-blown temper tantrum. By the time of my appointment, my leg was in a state of uncontrollable dystonia, making it difficult for my neurologist to fully assess the condition of my condition. But my leg was cold, and a different color, maybe not as swollen, blah, blah, blah. He asked where my worst point of pain was. Under the medial malleolus? Yes. And the center of the top of my ankle. And about two inches above my lateral malleolus on my fibula. And at the top of my fibula. And sometimes behind my knee. “Uh, huh. Yes,” he said, “those are the major nerve junctions…”

My doctor then reviewed the timeline of all of our visits in order to determine my progress, if any. We agreed that the medication and the pain management treatments help reduce some of the CRPS symptoms.

We had a discussion about baclofen. He asked if it made me sleepy. I said yes, but it, combined with the diazapam, actually controls the spasms. He raised his eyebrow as he looked at my shaking leg. I said I didn’t take my dose of baclofen yet because I fall asleep within 10 minutes of taking it. “Ahhh. And so you wanted to be awake for the appointment?” We laughed.

Then he quoted Voltaire. (I know I’ve said it before, but I will say it again. I love my doctors so much. Because they do things like quote Voltaire.)

“The art of medicine consists of amusing the patient while nature cures the disease.”

Yeah. Basically, he said there’s not much that he can do for me at this point beyond refilling my prescriptions. He was frustrated that he isn’t treating me. His frustration is with CRPS and how the disease has a mind of its own. He said that I should keep seeing my pain management doctor and come back to see him for another check up in 3 months.

While trying to fumble my shaking leg into its boot, I asked, “so, is this my life now, for the rest of my life?”

He looked down, he sighed, he looked up, he looked into my eyes. He said, “for now… CRPS takes hold, but at some point, sometimes, usually after many years, it decides to ease up. You first came to me four months after your injury. We were able to treat it early, and that can be promising.”

So yeah…

In other, happier news, on Monday evening, I took another ballet class! This was my second class since my accident almost three years ago. The first was last March, just after I’d had my nerve block. Monday’s class, even though it was the same “absolute beginner” class I’d taken two months ago, was exceptionally more difficult. My leg was not cooperating, and I had trouble standing on the right foot. Releve’s, and most certainly jumps, were out of the question. But who cares. I danced again. Sort of.

Seeing my teacher, interacting with the other students, hearing the brilliant pianist play for us, all helped heal aching pieces of my psyche. My teacher lives close to where I was staying so we rode the train together and were able to catch up. She gave me the best hug I’ve had in a while. I told her when I would be back in town again and that I plan to come to class again.

I was staying relatively close to Rockefeller Center, and I really wanted to see Jeff Koons’s new installation, Seated Ballerina. I walked down Sixth Avenue, past Radio City Music Hall, and wouldn’t you know it? NYU was having their graduation. Apart from the ensuing chaos, it was a pretty spectacular scene. Coincidentally, Columbia’s medical school was also having its graduation on the same day.

The hope that filled the city air that day was almost tangible.

I’ve Got Dreams to Remember

I guess at first glance, my night’s sleep looks OK. There was a lot of deep sleep, which is supposedly a good thing.

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But, the deep sleep is disproportionate and I always have crazy dreams. Throughout my life, I’ve tended to remember my dreams, and they have intensified since I started taking all of this medication. Now I have many dreams each night, in full color, with sounds, words, and emotions. It’s exhausting.

Here is what happened during last night’s adventures.

My first dream of the night… There are lots of bizarre, obscure details, but I’m just going to describe it and hopefully you can follow along.

I was a contestant on America’s Next Top Model (yeah, I know, but just go with it…) and there was a runway challenge that would determine the next elimination. For the challenge, we (the contestants) had to create “fashion” out of the outfits we came in. I looked down. I was wearing a truly stupid get up. It was an ugly 1990’s style black dress with an empire waist and a square neckline. Over the dress, I had on a bolero jacket with four buttons down the front.

Part of the challenge assignment was to jazz up our outfits with things we had in our bags. I looked to see what I had with me. I opened a little zipper pouch and some decorative bobby pins fell out.

“Sweet,” I thought, “I can put these on my jacket buttons to really make this outfit into high-fashion.” And as I was looking more closely at my decorative bobby pins, I noticed that, instead of a pretty little bobble, some of them had photographs of Tyra Banks, “Mr.” Jay Manuel, and André Leon Talley.

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So perfect. These photo bobby pins on my buttons on my bolero jacket are really going to make the judges sit up and notice. But shit! I have four buttons and only three people… I thought that I might have another bobby pin with Tyra on it. That would be acceptable. But gah, where is it? I could only find regular bobby pins.

And then, in the midst of my bobby pin and button debacle, I got distracted by a pile of take-out food bags at my feet. I had ordered a bunch of food. Really, really messy food with lots of sauces that leaked. I suddenly had a shrimp po’ boy in my right hand and a bag with a container of salad in my left hand. My sandwich was dripping into the lap of my 90’s fabulous dress. Shit. I tried to juggle the sandwich into a different position, and by doing so, I flung my left hand with the salad. The little plastic container with the salad dressing fell out of the bag and exploded on the pant leg of the contestant sitting next to me. “Oops. Gee, I’m really sorry.”

The food disappeared and I refocused on the challenge. The final element was to choose a song to play while I did my runway walk. I chose Love Lockdown by Kanye West.

And then it was time to line up for the runway show, which seemed to be held on the same stage as the Waterville talent contest from Jim Henson’s Emmet Otter’s Jug-Band Christmas.

I woke up before I did my runway walk, so I have no idea if the judges were wowed by my bobby pin buttons…

In my next dream, it finally happened. I got the call to be a Radio City Rockette!

As you can probably imagine, I was overjoyed. I made my way to the theatre for rehearsal, so nervous. My hands were sweaty and I had trouble opening the door that led into the stairwell that would lead me to the rehearsal room. I was walking up the stairs feeling happy and nervous and I was imagining myself onstage feeling the warmth of the lights. And then all of a sudden, I stopped. I said loudly out loud, “Shit! I have CRPS!” I sat down, halfway up the stairs, and cried. I was devastated because there was zero possibility that my right foot would fit, much less be stable enough to dance, in my LaDucas.

I woke up as the sound of my sobs were echoing in the stairwell.

In my final dream of the night, I was supposedly riding a subway, but it was more like Berlin’s S-Bahn.

The train was above ground (like the S-Bahn) traveling up what I think would have been 3rd Avenue. I needed to get off at 34th St. I was, for some reason, very confused about the trip, and it was a short distance, but took a very long time. I was sitting next to a girl, maybe 25ish, who looked very sweet and friendly. I made eye contact. I said something about how slow the train was and asked her if she knew why it was taking so long. She smiled and said she didn’t know. I realized that I wasn’t wearing any shoes. I thought, “not again.” (What does this even mean? I don’t remember forgetting my shoes in previous dreams…) I was sitting by the door. I heard the door open and close. A creepy guy got on and was standing in front of the doors. I avoided eye contact with him and tried to make conversation with the girl. I didn’t stand up, but somehow my eyesight aligned with his face. “I don’t know why you are trying to get advice from a crack addict,” he said to me.

“Uhm. A crack addict???” I said.

“Yeah. Her,” He said. Pointing with his head in the direction of the girl because his hands were in the pockets of a long dark blue trench coat.

“How do you know she is a crack addict??” I asked.

The guy leaned in very close to my face. His eyes were bloodshot and he scowled at me.

“Because I just smoked crack with her!”

And then I woke up and lied in bed trying to figure out what in the world I had just dreamt. Crack?!?! I dozed off a little before I gave up on trying to sleep.

So, if you ever wonder why I say, “mornings are hard,” this is part of the reason.  My pain is worse in the mornings, my head is groggy from the medications, and in just over 5 hours, I may have been on a national reality tv show, improvising a horrendous makeshift outfit before embarrassing myself, felt the elation of one of my childhood dreams coming true, only to be completely deflated by CRPS (gah, it’s my real life, I don’t need it hijacking my imagination too…), and ridden shoeless on the S-Bahn slowly making my way up 3rd Ave with a couple of crack addicts.

Your patience with me as I reemerge into the wakeful world, is truly appreciated.

A Gust of Wind

The pool was crowded and I was sharing a lane with a friendly ironman woman who swam perfectly straight lines on her side of the lane.

I was cruising, feeling strong and confident until a gust of wind blew the lane line. It drifted into my line and crashed into my right ankle. Well, it probably didn’t exactly “crash” into my ankle. I wasn’t swimming during a hurricane. Maybe the lane line gently nudged. But it was a direct hit to the anterior talofibular ligament, the ligament that suffered the most severe tear from my accident.

An electric jolt shot up my fibula. The interosseous membrane between my tibia and fibula caught fire. The water against my skin gave the sensation that all my skin had been torn and I was bleeding openly into the water.

My right leg dragged, paralyzed, as my left leg kicked and my arms pulled me to the safety of the shallow end. Unintentionally channeling Tonya Harding with her Olympic broken laces, I hoisted my leg up onto the ledge to inspect the damage to my CRPS ankle.

There was no fire, no blood, not even a mark from the impact. That’s how I know the hit was not really that hard. The lane lines are made of hard plastic. In earlier times, I’ve hit them with direct force when attempting to learn to swim the backstroke. They hurt. They leave marks when you hit the edges.

I stood on my left leg in the shallow end, slowly bicycling my right leg to see if I could get the “shock” to wear off. I tried to swim again. The message from my brain to kick my right leg was somehow muddled. My right leg would only sort of wiggle arrhythmically beneath me. I felt nauseous from the pain.

I swam one more lap and got out of the pool. I sat on a deck chair with my leg elevated, lamenting the unabating CRPSness of my leg, ankle, and foot.

And now, my ankle is swollen, my dumb leg’s skin is glistening, splotchy, and discolored. My foot is cold and tingly. The pain wants me to vomit (I’m holding it back…). The fibula feels broken, a hot knife is through the center of my ankle, a spoon is scraping out the interosseous membrane, and an invisible elf is inside my leg, separating the upper fibula from my tibia.

AGustOfWind

I’ve been watching a blinking cursor for the past 30 minutes trying to think of a hopeful and upbeatish conclusion to this post. I’m unfocused and drifting because of my medications and for some reason a Pharrell Williams song is overriding every thought I’m trying to have. I guess I’ll just leave you with the song.

Broken

My boot is an instant conversation opener. Always. Wherever I go.

I don’t go very many places, or very often, but responding to strangers has become very, very tiresome.

To break the monotony and repetition of how a freak misstep into a hole in the ground ruined my life as I knew it, I began to make up fantastic quick explanations about “what happened.” Sky diving, Space Mountain, tree climbing in the Serengeti, etc.

Sometimes, I don’t stop to clarify. I just keep on my wobbling way, leaving my interrogators to scratch their heads, trying to make heads or tails of what I said. Four or five wobbles away, I usually hear chuckles and I smile.

My responses are helped along by the medication, which has destroyed my internal filter. I don’t always know what I am thinking until I say it.

For example, a woman recently held a door for me. “Broken?” she asked.

Without hesitation, I responded, “Leg, no. Spirit, yes.”

I wobbled on, not stopping for further conversation. I didn’t hear a chuckle. I didn’t smile.

My Blog Process: Thank Goodness for Backdating

It all looks pretty coherent, doesn’t it?

Well, there’s a little computer magic behind these blog posts. I never know how I’m going to feel from one moment to the next so it is almost impossible to find a “normal” rhythm to my life.

The one aspect in my life that stays relatively consistent (apart from CRPS, that is… :-/ ) is swimming. I swim at least four days per week, at least 30 minutes per day.

Most of the time in the water is spent zoning out, trying not to wince, looking at the pretty sparkles, listening to my gasp for a breath followed by a long, constant exhale of bubbles followed by another gasp. Sometimes I like to make trumpet noises with my mouth during my exhale. Sometimes the trumpet noises sound like a pterodactyl.

However, sometimes, there are actual thoughts that enter my mind. Sometimes these thoughts demand further thinking instead of allowing themselves to enter my mind and leave again. I suppose a true zen master might let them go, in order to experience the bubbles, sparkles, and pain. But, having the clarity of mind and ability to think is a rare commodity for me now, so I allow myself.

When I get out of the pool, waiting for my leg to stop shaking, I sometimes open the WordPress app on my phone and start a draft for a new blog entry. Those blog entries are never finished when I start them. I store them up and when I have “good days” I finish one or two, backdating to the date of the original thought. I currently have 9 barely begun posts hibernating in my “drafts” folder.

Even this post has marinated for several months. I made my first notes in December; I’m finally finishing it in March.

So, you see, WordPress provides me the luxury of blog time travel. If only real life worked the same way…

Anyway, that’s how it works, and that’s why new posts will sometimes magically appear in the past.

 

My Brain on Drugs

Some folks like to joke about the fact that I “get to” take “drugs.”

Let’s be clear: I am forced, against my will, to take medication. I don’t like feeling cloudy. I don’t like the constant confusion. I don’t like not being able to think clearly. I don’t like feeling as if my brain was replaced by straw.

Here is an example.

(Yesterday, told in the present tense.)

I brush my teeth. I shower. I want to put on deodorant. I brush my teeth instead. I leave the bathroom and make it two steps, stop and remember. That’s right: deodorant. I go back into the bathroom and see my toothbrush. I brush my teeth. I leave the bathroom and make it two steps, stop and remember. This time, I’m not going to allow that dang toothbrush to trick me, standing tall on it’s charger, with its pretty green light. I walk back into the bathroom (determined, with as much focus as I can muster), repeating to myself “deodorant. deodorant. deodorant. deodorant…” until my hand has a firm grip on the container.

An hour later, I think to myself, “have I brushed my teeth today?”