What is wrong with people?

Something has really been bugging me since my five minute swim.

I know what you’re thinking… but that’s not it. I’ve actually managed not to chastise myself (too badly) about it.

The ulcerative colitis dude was swimming in the lane next to me and saw me struggling. When I stopped swimming, he stopped too. You know, to talk. It seemed nice enough. I though he was being kind, so I pandered when I really wanted to retreat into breathing techniques and transcendental meditation.

“Are you OK?”

“Yeah, it’s just a bad day. A bad day.”

“Are you in a lot of pain?”

“Yes.”

“So… Do you take medication for that?” He got some kind of weird twinkle in his eye.

“Uhhm. Yuh. I have medication that I take…” I trailed off. I was dizzy, my vision starting to close in.

He didn’t seem to notice or care as he launched into a laundry list of “do you take” controversial med-x, controversial med-y, controversial med-z, controversial drug group-a, controversial drug class-n… He listed no fewer than 8 medications and groups/classes of medications.

It pissed me off. He seemed excited thinking he had tapped into some hot-button topic plaguing our modern society.

Meanwhile, I was trying not to vomit from the pain in my leg. I got out of the pool. I walked away. He was still talking.

Halfway to my deck chair, I turned back. He was still just hanging out at the end of his lane, waiting for me to indulge his curiosity. I disappointed him.

“You know, I’m not happy or proud about the medication I have to take to control my CRPS. I have very good doctors who are trying to get me to remission.” I hobbled the rest of the way to the chair.

I am actually quite proud of myself that I mustered the self-control not to snap: ‘Hey buddy, it’s none of your fucking business!’

Jesus. If someone I knew, even peripherally from the YMCA pool, was in obvious pain, I would be more concerned with their well-being than their prescriptions.

(I’m very, very sorry about the explicit song I am about to insert… but… seriously…)

Dude, what the fuck is wrong with you?!

 

Advertisements

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.

 

Uh Oh…

So there I was again. At the goddamned YMCA for my daily swim.

Some Jesus freak, who first Jesus’d me back in December, stopped me in the hallway this morning (by physically blocking my path to the pool), in order to tell me how much “better” I look. And then, she proceeded to have a great idea: “You should open your own ballet studio!”

Go ahead and twist that knife the Universe shoved into my back, why doncha?

Obviously, she has never been a business owner, or worked tirelessly, trying to keep a business afloat.  Let alone tried to do it while crippled, in unyielding pain, and on drugs. “Whatever.” I grumbled at her, “You can see that my leg is shaking. I have to get in the water.”

I walked away.

I limped out to the pool deck.

Some overly cheerful aquaciser, full of saccharine and straddling a noodle, yelled out to me “I like your shirt!” 

I was wearing whatever shirt I slept in. I looked down: a wrinkled  green tee that says “ACHIEVER” on it.

20170523_1002241.jpg

It’s a reference to The Big Lebowski. It’s a reference I knew this lady didn’t get. I scoffed. “Yeah, thanks.”

She then chimed (in a sing-song sounds-like-someone’s-got-a-case-of-the-Mondays tone of voice),”Uh oh, looks like you’re in a bad mood today.”

Oh no, she di’nt… “I’m in a bad mood every day,” I snapped back.

She then tried to argue that I am not actually in a bad mood every day because I don’t look like I’m always in a bad mood…

I kept walking, but started uncontrollably muttering a bunch of stuff under my breath walking to my deck chair. I probably bore an embarrassing resemblance to  Yosemite Sam. “As if I’m supposed to be in a good mood for you” … “Who are you to argue with me about how I feel!?”… “You think I want to come here? That this is fun for me?” … “How dare you judge me based on how you think I look!”

And punctuating the half out loud rant: a hearty “fuck you, lady.”

She may or may not have heard me.  I don’t think I care.

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.

Screenshot_20170413-103813

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.

antm2

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.

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 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?”

We Became Polar Bears, Searching for Sea Ice

I wake up every morning still feeling (reeling from) my nighttime doses.

But, some days, the cloudy confusion lingers well into my swim. And some days the sun shines very brightly, making the water extra-sparkly. And some days the sound of the water seems amplified with every push and bubbly breath. And some days the pool heater was left on overnight, making for a soup-like environment.

Today, all factors combined: the hotter than usual water, the loud bubbles, the sparkles, the lingering medication.

I looked around at my pool mates underwater.

In my mild delirium, everyone was a polar bear, searching for sea ice.