Target

(Looking for warm-and-fuzzy?  Go here.  This long, angst-driven post is not for you...)

CL has been thinking a lot about life changes, poor medical care, people-in-need of social services, (mis)perceptions, beauty, sex and, well, LIFE in general. Many good things have happened, including new adventures and new strengths.   After speaking with her fabulous shrink about the Safeway and Whole Foods incidents, however,  CL has been "stewing" and "confused." 

Here was the conversation with her shrink:

Shrink:  So, how do people see you?
CL:  See me?
Shrink:  Yeah.  If you could describe yourself, and other's perceptions, what would you say?
CL:  I don't know.  I mean, I know the correct answer from my head, I can analyze their perceptions and my reactions all I want-- but I honestly can not define how I feel.  My heart is confused.
Shrink:  What do you mean?
CL:  Well, sometimes I feel invisible.  No one sees me.  They cut in line and ignore me, when I say "hey, I was here, first."  They try to run me over with their cars...they steal lights from the front of my house, so I can't use my wheelchair at night...they push me underwater, away from the rope, when I try to swim...you know...invisible...

Shrink:  They?
CL:  People.
Shrink:  What kind of people?
CL:  Arrogant,  self-entitled, I-would-call-them-pricks but I actually like the word "prick," so...you know...PEOPLE.
Shrink:  Not all people.
CL:  Yeah, not all people.  Just 90% of the world who live in their bubbles, ignore people in need, treat me like I DID SOMETHING WRONG.
Shrink: Anger.
CL:  You think?
Shrink:  And sarcasm.
CL: Really?
(pause) 
Shrink: So,  the "F" word?
CL:  Frustration?
Shrink:  Yeah.  Frustration.  So, tell me, how would you describe yourself, in these situations?
CL:  Besides angry and sarcastic? Fuckin frustrated?
Shrink: Uh-huh.
CL: Confused.  I mean, what do you say to people, when they make assumptions about your life?  When they chose to see you, and not ignore your existence?  When they scream out of their car windows, "hey fat girl, get off your ass and WALK outta that chair!"
Shrink:  What?

CL:  Oh yeah.  When people see me?  They are pissed off.  They think I put myself in this chair, I caused the tumors, I'm spending their tax dollars on services not really needed by a cripple.  I mean, one of my neighbors actually called the paratransit authorities to COMPLAIN about the bus, and how it was a waste of tax dollars to pick me up and take me to my appointments.  These are people with kids.   They should set a compassionate example for their children. Can you believe these people in suburbia, living their self-entitled, egocentric lives?  I mean, WHO DOES THAT?
Shrink:  Huh. Maybe you should move to Berkeley? 
CL:  Right.  A whole other kind of self-entitlement ass comes with Berkeley.
(pause)
Shrink:  True enough...so, do you feel like you have a target on your back?
CL:  A what?
Shrink: A target.
(long pause)
CL:  I don't like that word.  TARGET.  I don't like feeling as though someone has chosen me as a target for their rage. That's frightening.

Shrink:  Maybe, for the first time in your life, you are a visible minority. 
CL:  I'm a Jew in Walnut Creek, with a rare genetic disease.  Being a minority is nothing new.
Shrink:  The wheelchair is new.
CL: True.
Shrink:  People are making assumptions and treating you differently, because of how you move your hands and arms, use the chair, ask for help, try to swim, take the bus.  You're a visible minority, now.
CL: True.
Shrink:  So...do you feel like you are a target?
(pause)
CL:  I don't know.

Amen (says the spiritual atheist)

Read this.

Dedicated to the woman at the Walnut Creek Whole Foods who approached CL and said, "Wow, you are SO LUCKY to be shopping in a wheelchair.  You don't have to carry anything, and walking won't make you tired.  Do you even realize how lucky you are?"

CL:  "Uh huh. Unfortunately, my chair is not a luxury item, like your BMW."

Or, the Safeway check-out clerk who asked CL's personal care attendant (Miss J), "are you this special lady's caregiver?  You are so brave to help her out.  I wish we had more people like you, to help those who are, um,  you know-- special."  Then, the check-out person turned to CL and said- very slowly and loudly-- "what a good girl you are, to do your very own shopping!"

(later)
Miss J:  What was that about?
CL: She thought I was slow.
Miss J:  Slow?
CL:  Mentally challenged, mentally handicapped.
Miss J:  What is that?
(pause)
CL:  Retarded.
Miss J:  WHAT?  Why did you not defend yourself?
CL:  Um, first time anyone in my life has ever assumed I was mentally handicapped, in some way.  I was speechless.
Miss J:  You need to go back, defend yourself, let her know that you are not retarded."
CL:  And say what?  She thought she was being nice, kind, open-minded. Asserting myself after-the-fact would embarrass her, and make me look even more mentally challenged.  Next time, though?  I'll find a delicate way to say, "hey, this chair does not make me mentally--"
Miss J:  --retarded?
(pause)
CL:  Um, yeah. Retarded.

Thanks, S.K., for your insights this week.

ZEN

Fly Girl!

Fun video, huh?
Check out the cool post here, from Walkin' the Bark Rescue.  Here's a picture of CL's new wheelchair- the one that Judy describes in her post: 

Pretty. The pink rims sparkle in the sunlight.  The motorized chair will be used for distances, ramps, travel, and anything else that requires upper body strength.  The motorized chair has already improved our living environment by making things safer for all of us.  CL has fallen 11 times since she has been home from the hospital-- all because her legs or arms stopped working without warning, while she walked with the walker, pushed the old manual chair, or transferred to another spot (i.e., bed, shower bench).  There have been ZERO falls, once she has started to use the motorized chair.  One reason (besides the obvious stability factor) is that CL's pain level has been reduced by HALF since she stopped using the old manual wheelchair from the hospital.  Remember all of the upper arm, shoulder and back pain she was having, after surgery and during treatment?  And, how the doctor kept saying that she was "too sensitive" to pain, and the nurses mocked her need for pain medication?  Well,  CL no longer has pressure sores on her upper back, and her pain level has significantly dropped. It turns out that the old manual wheelchair was creating a lot of problems.  Now that she has stopped trying to propel herself forward with nerve-weakened limbs,  the rest of CL's body has had the opportunity to heal. (Go figure-- manually propelling a wheelchair over distances, ramps and hills are a problem for someone with permanent central cord syndrome, left undiagnosed for over 7 years-- something the folks in the Vallejo rehab center never thought about, I guess...)

 Oh, and in case you think CL's life is all about terrorizing walkies with a motorized vehicle, she has not given-up on using a manual chair.  CL's new manual chair arrives in 4 weeks, and it glows in the dark!  Totally awesome, right?  She is paying 100% out of pocket for the $3000 manual chair, but she wants to use it as back-up, in case there are problems with the motorized chair.  Plus, she gets to order a chair that will be less stressful on her body than the bizarro manual chair that was prescribed to her, when she left the hospital.   Her new manual chair will have long arms, to prevent unstable transfers;  a hard mesh back, to prevent the pressure sores she was getting from her old manual chair; and specialized "quad pegs," making it easier to push herself, since she has zero grip after 5 minutes.  CL plans to use this new chair for short, flat distances; and for traveling no more than 75 feet, which appears to be her limit before spasticity and pain sets in.  (Again, why did Vallejo Rehab not consider this an issue, before discharge?  Did they expect her to sit on her arse and not move, all day long?  Oy vey...)

Thank dawg Kaiser home health care, CL's new physical medicine doctor (he totally rocks!), and her wonderful PCP worked together and intervened to fix the safety and pain issues left unresolved during hospitalization.  Our life has settled into a routine, and CL is starting to explore the outside world.  She has arranged for art space at Creative Growth, and wheelchair Yoga at the Niroga Center for Healing.    She also returns to the rehab center for outpatient physical and occupational therapy.  She can not wait to use this really cool machine that will allow her to safely walk on a treadmill:

With this machine, she can test how long she can move, before one (or both) of her legs "disappear" from her body.  Finally, CL can safely experiment and try to build endurance, without the fear of falling or injury.   Woo hoo!  Next step?  Seizure control!

p.s. Why the colors and glow-in-the-dark?  Well, CL believes:  "You need to create 'pretty' wherever you can in this world-- especially shiny, sparkly, colorful pretty-- anything to lift your spirits and make your day a shiny, sparkly and colorful one!" 

(Tie Dye in the Wilderness by Lisa Sanditz)

Yeah...I have no idea how a hardcore horror author still maintains her psychedelic outlook on life...I keep thinking of the Creative Growth director's comment about CL, during the interview: 

"It's always the smiling, engaging and laughing artists who come-up with the darkest material..."

POV

View from bed:

View from chair:

(ears!)