Thursday, November 10, 2011
Friday, October 21, 2011
Sunday, October 9, 2011
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.
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
Overheard
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.
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 always...um, 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..."
Me: FICTION.
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 yeah...so, 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...
NOT.GOING.TO.DIE.
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.
Heh.
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 yeah...so, 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...
NOT.GOING.TO.DIE.
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.
Heh.
Monday, September 12, 2011
Sunday, September 11, 2011
Saturday, September 10, 2011
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.
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.
Thursday, September 1, 2011
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."
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."
Tuesday, August 30, 2011
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.
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.
Sunday, August 28, 2011
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!
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!
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