Danny and Annie

Interlude

Ah, LIFE...I'm in the midst of moving my medical care to UCSF, and I have taken a brief break from continuing the ER saga. Between transferring over 32 GB of medical history, medications and test results-- and researching current folklore and folktales for an upcoming podcast gig on"Faery Tales for Grown Ups"-- and finishing Dana's love story (more about this, later...)-- and conducting online promotions for my new dragon romance released September 6th-- time has become my enemy. Temporarily, of course. I leave you with this fabulous exchange between myself, Madame J, a mother and her 6-year-old daughter in Trader Joes:

Daughter: (singing in the shopping cart) It's cold, it's cold, I hope I don't get sick.
I'm sick-- cough, cough!
I'm sick, I hope I don't get cold-- cough! cough!
I'm cold, I'm cold, I hope I don't sneeze-- achew!
I sneezed! I sneezed-- achew, achew, achew!

The daughter shakes her arms and pretends to shiver.

Mom: Oh, please, don't be such a drama queen!
Madame J: (looking at me) That's you as a child. Don't lie, drama queen.
Me: Shut up.

Shame on You, Part 2

Part 1 recap...I fell. Loss the use of both legs. I kept falling. Couldn't transfer to my wheelchair, toilet, bath, bed without undergoing immense pain from abdominal muscle spasms (the only area of my body that has working muscles). Peed everywhere BUT the toilet. Refused to go to ER. Decided to take a wait-and-see approach. And yes, Madame J is a saint.
By the end of the week-- 6 days after my original fall-- I had decided that, perhaps, it would be good to see a doctor. As I explained to Madame J, "It's just to make sure I didn't do anything stupid to myself, when I fell." I made a same day appointment with the minor injury clinic. I also sent an email to my PCP because I was peeing "white stuff" (this usually means high levels of protein, not good) and blood (no comment). At the very least, I knew I had a urinary track infection. I really suspected my kidneys, but I was not saying "kidney infection" to anyone-- that would be a guarantee trip by ambulance to the emergency room. The PCP ordered a urine culture and Madame J helped me cath the "good stuff" into a sterile container for lab tests. We were good-to-go for the injury clinic appointment.

I knew I was in serious hormonal trouble when the doctor walked into the room. He was a big man, easily over 6'5". Tall, dark and gorgeous. He could have given me a hug and completely surrounded my body with his chest, arms, thighs...um, yeah. He was the kind of man that makes a short, fat girl feel like a delicate flower. When he left the room to order x-rays and I giggled for the hundredth time, Madame J and I had (yet another, sad-to-say) common exchange:

Madame J: Control yourself.
Me: What do you mean?
Madame J: If you could, you would have sex with that man right here, in front of everyone.
Me: So? What's the problem?
Madame J: You need sex.
Me: I know.
Madame J: NOT from the doctor.
Me: But he's hot.
Madame J: So?
Me: Look at you, missing your husband, needing some boom-boom-bang-bang yourself.
Madame J: We are not discussing my husband. You are the, what do you call it...?
Me: Slut?
Madame J: Yes. Just, stop the flirting.
Me: Why? He seems to like it.
Madame J: Because he thinks you are weird and funny. He does not take it seriously.
Me: So? Let me have some fun. You're just jealous.

Strange voice: Um, ladies?

Madame J and I look up. Oops. We forgot-- the nurse was still in the room.

Madame J: I apologize for her.
Me: You don't need to apologize. The damn doctors need to apologize for their "no sex or you'll die" rule. I mean, really, who forbids a young, healthy woman to not even have an orgasm? It's not right. I've gone over 18 months without an orgasm. I'm gonna EXPLODE.

Madame J rolls her eyes. She has heard this tirade many, many times. The nurse just laughs and shakes her head.

Nurse: Don't worry. We all flirt with him.
Me: (to Madame J) See? No harm, no foul. I take pride in my capacity to flirt like Scarlett O'Hara at the barbecue.

At this point, the doctor enters the room and we stop talking. He hands the paperwork to Madame J and gives us directions to radiology. Madame J asks him a question and I notice silence. Everyone is looking at me, but I have no idea why. I was too busy picturing the doctor naked.

Me: Um, what? Did I miss something?
Doctor: I understand you need to drop off urine for a culture?
Me: Yes. Why? Is there a problem?
Doctor: How long have you been fully incontinent?

I look at Madame J and she smiles. Damn it. She said something to the doctor. I should have been listening to the conversation instead of picturing him naked.

Me: About 6 days.
Doctor: Since the accident?
Me: Yeah, but I think it's from the abdominal muscle spasms, and it will get better. I always get UTIs when my bladder acts up.
Doctor: Well, this is a problem. You need to be seen in ER. You need an MRI.
Me: You can't give me an MRI?
Doctor: No, ER needs to schedule the MRI and do more tests. You know what urinary incontinence means and bladder infections and kidney--
Me: (interrupts) Yes, yes, I know, I know. Okay. We'll go to emergency.

The doctor looks at me. I'm distracted by his eyes. One eye has a speck of gold in the center, next to his pupil. Caramel mixed with chocolate. Yum.

Doctor: Will you go? Really? Or, do I need to find an escort for you, to make sure you arrive?
Madame J: She'll be there. I'll take her.
Doctor: (looks at Madame J) Good. I'll call them, so they know to expect you.

The doctor shakes his head and opens the door. He stops. He looks at me and raises his finger. For a moment, I think he's going to punish me for staring at his perfect ass.

Doctor: By the way? SHAME ON YOU.
Me: (trying not to look at his long, thick finger) Excuse me?
Doctor: You KNEW 6 days ago that you should have gone to the emergency room. You KNEW this was serious. You decided to IGNORE IT.
Madame J: (to the doctor) You are absolutely right. I've been telling her all week to go to ER.
Doctor: (still pointing the delicious finger) SHAME ON YOU.
Me: (finally ignoring the finger, his ass and his eyes, and deciding to focus on the conversation) I'm not a child. I understood the risks. I mean, seriously, do you know what ER would have done 6 days ago? Sent me home with pain meds and tell me to rest. They don't do anything for back pain. Nada. I even sent an email to my doctor and he said I should wait it out.
Doctor: You are not a normal back pain person. You are, well, you.
Me: I'm a cripple.
Doctor: Yes, you are in a wheelchair for a reason. They can't ignore you, especially when you have a fall and injure your back. I doubt anyone can ignore you, when you speak.
Me: They sure as hell can ignore me. How do you think I got into this wheelchair? They ignored me for 8 years.

Silence. Then, he walks over to me, takes my hand, and looks into my eyes.

Doctor: We made mistakes, and I can't change the past. Just promise me you will take better care of yourself. No more risks, no more chances with your health. You are a beautiful, intelligent woman.
Me: (really not listening because he is HOLDING MY HAND). Um, okay. You're right. Whatever.

The doctor looks at Madame J.

Madame J: I know. She's stubborn. But she has learned her lesson. She won't do this again.

The doctor squeezes my hand, shakes his head, and leaves the room. I look at Madame J and ask, "Did he just call me beautiful?"

Madame J: (pointing her finger) SHAME ON YOU.

Next...emergency, or "Don't give me morphine. Morphine means I'm dying."

Shame on You, Part 1

I have a problem. Okay, I have many problems-- but I have one particular problem that keeps my psychologist, my doctors and Madame J in business:

I hate to admit that I am wrong.

On the outside, I apologize: "Oh, I'm sorry, I know you're right" is a common phrase. I try to avoid eye-rolling and smirking, usually with a modicum of success.

On the inside? "Yeah, whatever, just move on."

When I add the inability to admit I might (hah! notice the "might?") be wrong with physical challenges and my propensity to do stupid things? You have every single reason why I end up in the emergency room.

Let's take the latest visit to the ER as an example of my conduct. It was a Sunday. Madame J does not work on Sundays and I depend on friends and neighbors to drop by and help. I get the basics done-- shower, eat, dressed-- but usually the day is slow, slow, slow. I can only write for about 2-3 hours before my voice gives out and my hands no longer work. On this particular Sunday, I was worried that the garden was droopy. I knew the garden would have survived another day without water-- except the temperature had been over 100 degrees for 2 waterless days, and my beautiful veggies were starting to wilt. I could have called a neighbor to come over and help me water the garden. I didn't care, though. I thought, "Why not give it a try? No one will know."
(yep, I thought "no one will know" because I knew I was doing something wrong)

Here's the challenge: In order to water the garden, I have to climb the deck, swish my body around the edge, reach over to the spigot and turn it on. If my hands, arms and legs worked well, this would not be an issue. For me, even on a good day? It's an issue. I know this-- but, I was bored, the garden looked sad, and I figured, "Why not? I'll make this an occupational therapy project! " (btw, all my new adventures begin as "occupational therapy projects," although I suspect my OT would flip out, if she knew...)

So, I brought my wheelchair to the edge of the deck-- put a mat on top of the wood to protect my knees-- and started to crawl. When I reached the spigot, I leaned over to try and turn it on. And then (you guessed it):

I fell.

Do you sense a common theme? I did my usual swear-out-loud rampage and crawled back to the wheelchair. I made it to the cottage and tried to transfer into bed. The problem? My legs had stopped working altogether and (you guessed it):

I fell. Again.

I had also peed on myself. Not good. At this point, I knew I had a problem. Sugar, my service dog, kept trying to hit the "emergency button" connected to the phone. I knew I should have let her call 911 and get my fabulous booty to ER. Did I do the logical, sane step? Nope. Instead, I told Sugar to "leave it," crawled to the bathroom, cleaned myself, found new clothes, took some pain meds, and did a paraplegic crawl into bed.

By Monday, I was doubling my pain meds, unable to transfer from the bed to the wheelchair, and peeing in diapers. Still, not good. Madame J walked into my cottage and we had a normal exchange (for us):

Madame J: Are you okay?
Me: Yeah.
Madame J: What did you do?
Me: Nothing.
Madame J glares at me until I crack under pressure.
Me: Okay, I had a small fall yesterday and hurt my back.
Madame J: What did you do?
Me: (proud) I figured out how to water the garden!
Madame J glares at me. Again. I crack.
Me: It was safe. I used my mats.
Madame J: (sighs) You need to go to the hospital.
Me: No.
Madame J: Why not?
Me: They won't do anything. They'll just tell me to stay in bed, take pain meds, and wait 3 days for the muscle spasms to calm down. I can't ice because of the autonomic dysreflexia, which totally sucks. I'm okay, as long as I don't move.
Madame J: (cleaning the weekend mess) You need to go to the hospital. You can't move.
Me: I can move. I just can't move my legs and transfer. It's temporary. I probably pulled a muscle when I fell. I can still crawl and wear a diaper, as long as I take more pain meds for a couple of days. Really. I'm okay. Really.
At this point, I suspect Madame J debated calling an ambulance for a 5150, and not for the back injury. Instead, we talked over the routine for the week. I sent an email to my doctor, and he repeated exactly what I had said to Madame J-- wait 3 days, if not better, go to minor injury clinic. By the end of the day, Madame J had refused to leave until I had called my Mom and a couple of friends, to ask them to check on me during the night. Apparently, my personal care attendant really hates walking in on a dead patient. Go figure.

The critical piece I did not mention to anyone? My loss of bladder control. It was easy to hide since I use catheters, diapers and commodes because of a neurogenic bladder. I knew that complete loss of bladder function was unusual-- but, I decided to take a wait-and-see approach since my abdominal muscle were undergoing intense spasms. What's the worse that could happen?

Next...minor injury, emergency rooms, and a hot doctor.

Why "Mock the Cripple?"

It started as a simple exchange between my personal care attendant (Madame J) and myself, while I struggled to move from my wheelchair to the garden path, aka "cripple's crawl-way." A yoga mat sits in between the tomatoes, corn, beans, sunflowers, squash, herbs and lettuce. The process is usually simple and uneventful:

I fall.
I move the wheelchair to the front of the mat, shift my butt, and use my inability to stand upright to fall to the ground. My physical therapist calls it a "control fall," although I suspect she would be horrified to learn that I was falling on purpose since the method is meant to protect myself during an accidental fall. Whatever. It gets me to the ground and safely lands my butt onto the yoga mat, where I can piddle in the garden and pretend to pluck squash and pull weeds. Usually, though, I sit in the crawl-way and tell Nick (a neighborhood boy who helps me care for my service dog and work the garden) what to do. Often, a good funk is playing in the background and the fall is accompanied by a strong boom in my speakers and a sexy voice singing about love, loss, and the art of a fabulous B-O-O-T-Y.

On this particular day, I had convinced myself that I did not need to wait for Madame J or Nick to arrive, to ensure my fall was safe and I would remain uninjured. I felt strong, and my brain convinced my body, "You go girl! You're the best! You can do it! Why wait for help? You only need yourself!"

(I never said I was smart, right?)

So, I wiggled my own fabulous B-O-O-T-Y towards the ground and landed on my right leg and belly. My not-so-sexy vocals screamed over the music:

"God damn son of a bitch motherfucking OUCH"

Madame J: You okay?
Me: Yeah.
Madame J (running outside): You sure?
Me (flopping on my belly like a beached baby seal): Yeah.
Madame J (helping me sit up): What did you do? DIdn't I tell you to wait until Nick came, before you work in the garden? Didn't I say--"
Me (interrupts): Don't start.
Madame J (checking me for wounds): Start what?
Me; Start, um...
Madame J: Start, um, what?
Me (yelling): DON'T MOCK THE CRIPPLE.

I stopped, shocked at myself. She stared, trying to process my words and their meaning. Then, we both busted out laughing, giggling uncontrollably for a good 10 minutes. Madame J has worked with me for over 18 months, since the day I returned from surgery and spinal cord injury rehab. We have reached a point in our relationship where we finish each other's sentences. She has always, ALWAYS respected my decisions and helped me, unconditionally. Up until that moment in the garden, however, neither of us has laughed-out-loud over my physical challenges and my mental games.
You see, I am slowly becoming paralyzed from the neck down due to inoperable tumours compressing my spinal cord. I spend most of my life in a wheelchair or in bed. I have some movement in my arms, abdomen and legs, but my autonomic nervous system-- that part of you that controls your heart, your kidneys, your lungs, your blood pressure, your stomach, your innards, even your tears-- struggles to work. When I float in a swimming pool, my head is discombobulated from the rest of my body because I can not feel my limbs and torso. The seizures dull my mind, and the constant, debilitating pain reminds me of my mortality.

On the day I'd first yelled, "Don't mock the cripple!" I probably meant to use the word "mock" to mean, "ridicule." The common definition says:

to attack or treat with ridicule, contempt, or derision.
to ridicule by mimicry of action or speech; mimic derisively.
to mimic, imitate, or counterfeit.
to deceive, delude, or disappoint.

I learned, however, that the word "mock" can also mean:
to challenge; defy

What if I had meant to say "stop defying me!" when Madame J had (rightly) questioned the decision I made to fall without waiting for help. What if we start to use the phrase "mock the cripple" to actually mean, "challenge the cripple?" What if I spend some time writing about those moments in my life where I have been mocked-- in negative and positive ways-- because of my crippledom?
Why not? If you don't like it, you can always leave. I am not a warm-and-fuzzy human being. I do not look for the good in humankind, including myself. I purposely use the word "cripple" because it carries shock value. The word is not pretty, and it refuses to be socially acceptable and politically correct. It carries negative meaning and usage that needs to be confronted. What better way to confront the meaning than to purposely use it to describe myself and my experiences?

Heh. Something to think about, n'est-ce pas? If you decide to stick around, then welcome, dear internet. In the words of Margo Channing:

Fasten your seatbelts, it's going to be a bumpy night!