Saturday, October 8, 2011

Within the sounds of silence

Him: What do you miss the most?
Me: Swimming. In the pool, feeling the water enclose me in silence.
Him: What do you mean?
Me: (closing my eyes, remembering) I gave myself the freedom to take 70, maybe 90, minutes, every morning, to not think. Just focus on my breathing, the coolness of the water, the movement of my limbs.

Hello darkness, my old friend, I've come with talk with you again
Because a vision softly creeping, left its seeds while I was sleeping
And the vision that was planted in my brain, still remains
Within the sound of silence

Me: It's hard to explain.
Him: Try.
Me: It's the same feeling I would have with Yoga. Not the silly, half ass, modified Yoga I do now. The Yoga where I would lose myself, stay focused on the movement of my body, feel the bend of my spine, the reach towards the sky, the breath move my chest. I would greet the sunrise every morning with a salutation. For 20 minutes of my life, every day, I was calm. At peace. In silence.

In restless dreams I walked alone, narrow streets of cobblestone
Neath the halo of a streetlamp, I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light, split the night
And touched the sound of silence

Him: What happened?
Me: (pointing to the chair, my arms shaking) THIS happened.
Him: What do you mean?
Me: After the changes to my body, I lost my capacity for silence. I've tried everything I can to find it. To regain my focus. I'm a bit lost, trying to discover who I am, the power of my body. Everything I have tried has failed. Even the words I spit onto paper. Epic fail.
Him: What do you mean?
Me: I just...I don't know. It scares me because I feel broken. Lost without my silence.

And in the naked light I saw, ten thousand people, maybe more
People talking without speaking, people hearing without listening
People writing songs that voices never shared, and no one dared
To stir the sound of silence

Him: Is that how you see it? A failure, in some way?
Me: I don't know. I had always thought that losing the capacity to write, the storytelling, would be my biggest loss. It's not. Somehow, when I lost the capacity to be still, quiet, focus on nothing but the air around me, my body in motion, I lost...a piece of myself. Maybe a piece of my soul? Oh, I know it sounds melodramatic-- but it's how I feel.

Fool, said I, you do not know, silence, like a cancer, grows
Hear my words and I might teach you, take my arms then I might reach you
But my words, like silent raindrops fell, and echoed in the wells of silence

Him: What have you gained?
Me: What do you mean?
Him: What do you do, now? How do you fill your days?
Me: Writing, reading, talking, visiting, observing. I still exercise, just not in the same way. I do my 90 minutes of daily stretching and range-of-motion exercises, with some modified Yoga thrown in for thrills. It's just...I miss...I miss that calm feeling while swimming laps, where I had no thoughts about my deadlines, a story, a friend's pain, a family crisis.

And the people bowed and prayed to the neon god they'd made
And the sign flashed its warning in the words that it was forming
And the sign said the words of the prophets are written on the subway walls
And tenement halls, and whispered in the sounds of silence

Him: That silence you speak of? It is still a part of you. You'll find it again.
Me: How can you be so sure?
Him: Remember your social worker? The one who had a shitty day and cancelled all of her meetings, except yours? When I asked her about it, she said that one hour with you can turn a bad day into a good day.
Me: So? That's not me. She did that, herself. All I did was make her some tea and give her a moment to decompress from a really bad day.
Him: Think about it. She was there to take care of you, the woman in the wheelchair who can't even lift a tea pot without help. And yet, you made her tea. You gave her time to be herself, to not worry about anything or anyone. You gave her a moment of "silence." That's how I know it's still a part of you. All you have to do is find it in yourself.

Saturday, October 1, 2011


While driving my speedy wheelchair towards the pharmacy window, I heard some yelling and screeching about 10 feet behind me:

Some random woman (SRW): Damn it!
Madame J: Ouch! Watch where you're going!
SRW: It's not fair!
Madame J: Excuse me?
SRW: That wheelchair beat me to the pharmacist.
Madame J: Is that why you ran into me? You were trying to race the wheelchair?
SRW: It's not fair. I should have run faster.
Madame J: Oh, really?
SRW: Really. Damn wheelchairs. I should have run faster.

Saturday, September 24, 2011

A matter of touch

A couple of month's ago, my manager called to ask if I would be interested in submitting a romance story for an upcoming anthology on "military men and women."

Me: You know, I don't do romance unless there's death involved. Preferably death by human sacrifice and/or cannibalistic bunnies. Especially death during sex, as long as wolf shifters bust out and eat--
Manager: (interrupts) STOP. What is it with you and cannibalism?
Me: Cannibalism AND bunnies. You forgot the bunnies.
Manager: (long pause) Regardless, this is a good opportunity to reach out and try something new.
Me: Do you think I am in a funk?
Manager: I never said that.
Me: What? Not enough NYT bestseller listings to make you happy?
Manager: I never said that.
Me: Are my damn cripple hands not producing enough smut to supplement your overpriced sex life?
Manager: (growls) I never said that.
Me: Well, okay then. I'll give it a shot. How hard could it be to write a "normal" girl-boy romance?
Manager: Great, I'll send you the specs.
Me: Wait! Does BDSM count as normal? Spanking and light bondage are okay, right?

Strangely, the actual romance story was easy to write. Boy meets girl in sex club for a one night stand. Boy and girl go oversees to fight in Iraq, still dreaming of their one night stand. Girl comes back early, blind and emotionally paralyzed from PTSD. Boy finishes his tour of duty. He learns girl is injured, severely depressed, and refusing to leave her apartment. Boy kidnaps girl and makes her understand that "love conquers all."
A nice, normal, easy-to-write romance story.

Surprisingly, the hardest part was the research I conducted on veterans, military families and the impact of PTSD. I spoke with three families who have men and women serving in Iraq and Afghanistan. Two returned home with debilitating physical injuries, and all had to be treated for PTSD. They opened up about their relationships with their husbands and wives. I discovered a common theme-- and this theme became the catalyst for healing the Girl, the Boy, and their own relationship.

Manager: Oh. My. God.
Me: What? Did you get the story?
Manager: Fucking brilliant. They want more.
Me: More what?
Manager: More EVERYTHING. What happens, after the HEA? ("happily ever after") How does Girl work around her blindness, become independent, no longer depend on Boy for happiness? The PTSD doesn't just magically disappear. Do they really live a long and happy life?
Me: (not really listening) Sure, why not, don't they, you know...
Manager: Fucking brilliant. How much of the Girl is YOU?
Me: (suddenly listening) What are you talking about?
Manager: She's hurt. She's lonely. She's depressed. She misses normal TOUCH. What do you write? "He touches me as one human to another. I am no longer a subject, to be poked and prodded by doctors, nurses, therapists and even friends. His touch makes it clear-- in his mind, I am someone worth loving..."
Manager: Yeah, right, come on. This is too REAL. Your personality, your emotions are all over this character.
Me: Just because she is disabled--
Manager: (interrupts) Bullshit. Don't lie. This story reads like your journal. Or maybe your therapy sessions? Have you seen your Ex lately? Has he read this? What does he think?
Me: FICTION, FICTION, FICTION. I am not the Girl!
Manager: Fuck, I don't really care. They want a book, not a story for the anthology. Think you can get it done by December?

I get off the phone and re-read the story. The healing power of touch is nothing new in the recovery world . There are programs that provide learning credits and degrees in "healing touch." In my story, loving, caring, demanding, painful touch is the catalyst that brings the Girl out of her funk and into accepting a relationship with the Boy. Touch is the tool the Boy uses to push the Girl into accepting her circumstances, and his love. Corny, but it works in the story.

It also works in "real life." You know, those moments when you rest against another human being and your heart synchronizes with their heartbeat. You feel their chest move-- maybe a leg shift or a finger gently stroke-- and you would become overwhelmed with the intimacy of that moment in time. It's not sexual, medicinal or clinical. Rather, it is an intimate, simple, calm, reassuring touch that gives you the impetus to push through angst and enjoy life, with all of its wrinkles-and-crinkles.
When was the last time I had cuddled with another human being, skin-to-skin, ankle-to-ankle, chest-to-chest- lips-to-lips, forehead-to-forehead, hands-to-hands? Unknown. Perhaps missing, altogether, since the surgery. I've been working with the assumption that-- since I can't feel touch, and it may cause horrific pain-- I don't miss it.

Perhaps I've been wrong.

Friday, September 23, 2011

Shame on You, Finale

To recap...I fell. After a week of falling and uncontrollable peeing, I went to Kaiser's minor injury clinic. I enjoyed lusting after a hot doctor. I, reluctantly, agreed that I was wrong to wait for medical attention. Maybe. Madame J escorted me to emergency, where the hot doctor had called ahead to ensure I would arrive in a timely manner. See Part One and Part Two for more information.

I started this blog entry in the usual way-- a cuppa chai, a soft piece of bread (yum, breakfast!), a carefully crafted position of the iPAD's microphone, and a boost of Dragon. This is the last entry for "Shame on You," and it should be the easiest. I finally got my bee-hind into the emergency room, right? I've obviously lived to tell the tale, right? No worries. As soon as I read my post, however, I looked at Sugar and said:

"Holy shit. I am one angry bitch."

(I suspect Sugar thought, "Um, yeah? Tell me something I don't know...?")
You see, I hate my local Kaiser emergency room. Actually, hate is a mild word for my feelings of disgust, repugnance, loathing , revulsion and abhorrence. I'm sure they save many lives and are equipped to handle strokes, heart attacks, lacerations and broken bones. But when a C4 Quadriplegic with incomplete cord damage and complex conditions enters their doors? They are inept to the point that they almost kill me. Seriously. I have been sent home with non-medicated kidney infections and out-of-control autonomic dysreflexia simply because the staff was unable to follow treatment protocol. Earlier in the year, I had introduced myself to the Emergency Department Medical Director and spent some time reviewing the procedures. The end result? He was very nice, but honest:

"We just don't have the time and resources to train our staff to provide the level of care you need."

On this particular day, how badly could they screw-up a bladder infection and lower back injury? I originally wrote a long, involved story about the horror (the horror!) But who wants to read (yet another) angst ridden tale of medical incompetence? Personally, I prefer to dream about the hot doctor and his fine, fine ass. Yum. Uh, where was I? Oh, instead of the original crap I put into words, here is my ER experience captured in 3 acts: Beginning, Middle and End.

The Beginning

I knew I was in trouble as soon as we entered the room and I needed help transferring to the hospital bed.

Nurse: Can you stand? Walk to the bed?
Me: Uh, no.
Nurse: No? Why not?
Me: (looking from the nurse to my wheelchair) I'm quadriplegic. Limited movement from the neck down. Here because I can no longer stand and walk. I fell and hurt my lower back. Can you call a lift team?
Nurse: No, too much trouble. Let's see if we can move you to the bed, ourselves.
Me: The bed is too high, I'm too fat, and I can't stand.
Nurse: You can hop up, can't you?
Me: Hop? Like a bunny?

Okay, at this point, sarcasm was probably not appropriate. Madame J was trying not to laugh. The nurse just looked confused. So, I tried again:

Me: Why don't we just call a lift team?
Nurse: No. Too much trouble.
Me: Oooookay. Huh. Do you have a transfer board?
Nurse: What's that?
Me: You know, a board that I can put between the bed and my wheelchair, so I can slide over?
Nurse: No, we are a hospital, we don't have those things here. Let me find someone to help.

The nurse leaves the room and I look at Madame J.

Me: I want to go home.
Madame J: No. Just stick it out. You need that MRI.
Me: But they don't even KNOW what a transfer board is!
Madame J: I know.
Me: They haven't even taken my vitals, yet!
Madame J: I know.
Me: So, let's leave.
Madame J: No. You stay. I'll drop off your urine and pick-up your medication refills, while we wait. We will talk about it when I return.

The Middle

Four hours later, Madame J enters the room, prepared to say "goodbye" for the evening. Her shift has ended and I convince her to leave. No one was doing anything, and I was still waiting for my MRI. The ER doctor (not hot, but still producing testosterone and worthy of a smile...yes, I have no shame...) enters the room.

Doc: Your blood pressure is too high. Did the nurse cath you, yet?
Me: No, they didn't have the right size catheter, so I did it myself. I brought my own supplies.
Doc: I guess it's good you came prepared, huh?
Me: (laughing) Yeah, guess so. (Serious face) I'm 3 hours late on my meds. It's probably pain-related.
Doc: Let's give you some pain meds and get the pressure down.

The doctor grabs my arm and points to the open line they put in my vein.

Doc: Just a little bit of morphine and you'll be fine.
Me: No morphine.
Doc: It's just morphine.
Me: I promised myself I would only take morphine if absolutely necessary, or if I'm dying.
Doc: Huh?

Madame J starts to very slowly walk towards the door. I glare at her, and she stops trying to escape the room.

Madame J: She believes that morphine means she is dying.
Me: It DOES mean I'm dying. Let's just stick with Norco and Gabapentin, okay?
Doc: Uh, okay. You do know I could-- POW!-- one simple injection and you're feeling fine.
Me: Yeah, I know, but a couple of little pills and-- POW!-- I'm fine. Okay, maybe 45 minutes later, but still...


Madame J: (to the doctor) Don't worry. She has a very nice psychologist.
Me: (to Madame J) Hey! Don't mock the cripple!

We laugh and the doctor leaves the room. Madame J thinks he had to leave to order the meds. I'm convinced he left because I was a crazy bitch, and he was afraid the insanity was contagious. Regardless, they arrive with my pain meds and (45 minutes later) and I am stable enough for the MRI. I convince Madame J to leave since the County won't pay for any more of her time. (It's one of those "rules" the government uses to enforce in home care. Long story.)

The End

After 11 hours in the ER, the nurse insisted my bladder infection was "nothing to worry about." (This was before my PCP called to say they had to send the results to the Centers for Disease Control-- something about "incredibly resistant bacteria and extremely high levels of protein.") The ER doctor mentioned that the MRI showed a "stable enough spine." I was sent home with strict instructions to "take more pain pills and stay in bed."

Nurse: Here are your discharge papers. Is someone coming to pick you up?
Me: No.
Nurse: Why not?
Me: It's after 4 in the morning. Wheelchair. Special car needed. Not worth the drama.
Nurse: How will you get home?
Me: I'll drive myself.
Nurse: Oh, that's nice.
Me: (I slap the wheelchair) This puppy goes 5 mph. I should be home in 15-20 minutes. I only wish it had headlights for the dark roads.
Nurse: Oh, that's nice.

The next day? The neurologist called to say they found more tumors and leaking spinal cord fluid.
In a strange-and-twisted way, the ER visit did save my life because they completed the MRI. It turns out that the damage to my lower back is identical to the damage to my neck, and the disease has progressed to other areas of the spine. I would have been completely ignorant of this fact if I had continued to refuse medical treatment and ignored my repeated falls. Granted, it kinda sucks. I can no longer walk, and I have had to adjust my morning exercises around my wobbly, weakened legs. It could be worse, though...

I could still be in emergency, trying to hop onto a gurney like a crippled bunny while they attempt to shoot morphine into my open vein.