krishanna.com :: as the crow flies

Now I Remember

...why I don't read a lot of governmental and politically correct sites about disability. I overdose on the antonyms and euphemisms and the bullshit. George Carlin called it soft language so I looked and found the bit that popped into my head more than once today.

"I don’t like words that hide the truth. I don’t like words that conceal reality. I don’t like euphemisms, or euphemistic language. And American English is loaded with euphemisms. Cause Americans have a lot of trouble dealing with reality. Americans have trouble facing the truth, so they invent the kind of a soft language to protect themselves from it, and it gets worse with every generation. For some reason, it just keeps getting worse".

Ahhhhh...You Tube rarely fails to provide.

A Room of One's Own

Okay, so it's been a few weeks. I've had a bunch to do in preparation for getting the equipment for my new workspace.

I had to transform this:

To this (with some help of course):

Doing that meant moving the furkids into the kitchen and finding a place for everything else, which is no easy feat nor for the faint of heart.

We live in a small house that is positively CRAMMED with stuff and so when you move one thing, you have to move at least three other things. It's a bit like living in a jigsaw puzzle. So when you move substantial things around like storage space or furniture or furkids kennels, it takes awhile. Then add me and my spine to the mix, it probably takes 3 times as long for me to get anything done even with help.

But it is done now and once I got to work in here, I realized how much I missed having a space of my own in which to write. I had been working and writing at a station in the living room which is perfect for web surfing, light e-mail reading and photo editing but it lacks the flat space and the environment conducive to productivity and writing. And it's nice to have a desk again with a good comfortable chair in which to lean back in and think deep thoughts about social media and writing and and art- whatever pops into my head to feed my insatiable curiosity and active imagination.

Though I share this space with the washer and dryer and an art making nook, I have really been enjoying  have a space where I can be alone, that is mine to write in again. In her book, "A Room of One's Own", Virginia Woolf wrote, "'a woman must have money and a room of her own if she is to write fiction". I don;t have a lot of money so I don't write a lot of fiction but I have to say it has been lovely to write and work with no other person in the room; no TV droning on and on with programs I detest. I have caught myself wondering if this isn't more important than having having a studio. Perhaps not.  Perhaps they are equally important and I am just a space hog.

What do you think?  How important is having a space in which to create where you can be alone ? Do you have a space of your own at home where you can be alone to blog or do art or write or mix music or whatever it is you do? If so, how important is it to you? If not, how do you manage?

NaBloMoPo 02 :: Depression & Recovery

Lotta was over on her blog today discussing depression and I went and found my rant-i-pants

She made a good point about how the process of 12 Step recovery would be helpful in dealing  with a depressed family member. I have 20 years of sobriety this year (it came and went in July, people) and I have to say one of the single most important part of the whole recovery process is honesty. 

I have had to sit and listen to people tell me how my addiction to drugs and alcohol affected them. None of it was pleasant but it was important for me to hear. I had to sit and tell others how their behavior affected me. Not all of it was pleasant to say but it was important for me to do it.

Made For TV or Real Life?

Life: A Few Years Later

Monday, March 19, 2001
To whom it may concern-

I am tired. I am tired of not being to clean my house. I am tired of not being able to wash a full load of dishes.I am tired of keeping a positive attitude. I am tired of trying not to be too much of a burden on my loved ones. I am tired of reminding myself there are others who have it much worse than me. I am tired of struggling to get out of bed in the morning. I am tired of having to use a motorized cart to do my grocery shopping. I am tired of pain. I am tired of having to sit down and rest every 10 minutes when we go to the mall. I am tired of being an albatross. I am tired of walking into a new store or restaurant and looking for the bathroom, "just in case". I am tired of being fat. I am tired of not being able to exercise enough to burn enough calories to not be fat anymore. I am tired of being awakened a half a dozen times at night because of leg and foot spasms, cramps and twitching that WILL NOT GO AWAY.

I am tired of looking ahead. I am tired of needing to use a handicapped placard. I am tired of pretending not to notice people watching me to see if I really am disabled. I am tired of the looks in old friends' eyes when they remember how I used to be and compare it to what they see before them now. I am tired of strangers asking me if I am really disabled. I am tired of fighting with an insurance company and with my attorney just get treatment I desperately need. I am tired of pain. I am tired of having to take medication.I am tired of losing my balance. I am tired of watching the weather channel to see what kind of pain the weather will bring each day. I am tired of "rating my pain".

I am tired of needles and doctors and tests and procedures and hospitals and physical therapy. I am tired of medical double talk. I am tired of feeling new pains. I am tired of numbness. I am tired of being tired. I am tired of asking for help. I am tired of beating myself up for not being the person I used to be. I am tired of having special needs. I am tired of not feeling whole. I am tired of not being "normal". I am tired of not being able to…(fill in the blank).

I am really tired and I just want my life back.

______________________________________

I wrote this and included it in my first assemblage (below) about my disabilities which was created in 2002, two years after my last spinal surgery. Since then I have learned I have something called and generally referred to as "accquired disabilities", meaning I wasn't born fucked up. These disabilities are also referred to as largely "hidden and invisible", meaning that I have no discerning or visible evidence or deformity that would suggest that I am anything but "healthy and normal", albeit a bit fat. This is especially true if I am minus a cane or my motorized scooter until you see me get up and walk. Because of this, I have had to learn how to be disabled. My cane became "The Legitimizer". The scooter, the difference between enjoying days out instead of getting through them. Life changes.

I have learned that an incomplete spinal cord injury is not enough to make you disabled in the eyes of the Social Security Administration. However becoming chronically dysthymic (chronically depressed) and mildly agoraphobic because of the incomplete spinal cord injury does.

I have learned more about pain that I ever thought existed. I hate pain. I always have. Before becoming disabled at 11 years sober, I drank and used drugs for 10 years in attempts to eradicate the emotional pain of an unhappy and troubled childhood and physical pain was something you took a pill for and it went away. Now, I know about chronic pain and nerve pain and that you can still feel pain in the numb places. I've learned pain also buzzes, vibrates, and burns. I know about pain that never goes away. Syndromes and terms for the complications of multiple spine surgeries have appeared and changed and remained the same for the last several years: Cauda Equine Syndrome; chronic pain and depression; suspected mild fibromyalgia,; blah, blah, blah...

I've learned some of your oldest friends completely disappear because they can't cope with the "new you" and others find their way back to discover you aren't the same you they once knew. Sometimes, you're lucky and they take the time to get to know you again. Sometimes, you're not.

I have learned that within the "disabled community" there is discrimination. For example, I have been told I am not really disabled because I am not in a wheelchair or paralyzed in someway. I have been told that because I appear to function fairly well most of the time and work hard not to let my disabilities interfere with my life, I must not hurt as bad or be as disabled as I tell people. These things have been said to me by other people with and without disabilities. It's as though because I can walk, control my pain fairly well through drug therapy and sheer endurance, and manage to keep a smile on face and a sense of humor most of the time, I can't be as disabled as I say.

I have also learned there are people who want to stay disabled not only in body but in mind. They remain stuck for the rest of their lives in chronic pain support groups and chasing the illusion of the magic pill that will make it so they can "live life again". I've relearned the vast difference in powerlessness and helplessness. If I had spent the last several years waiting around "to live again" instead of just living again regardless of circumstances or pride, I would still be waiting.

I've also learned I can't abide the attitudes and excuses that exist for people with disabilities which prevent and in some cases enable them from having any expectations of what they can do or accomplish. Anyone who knows me, knows that I have a special place in my heart for people who live with cerebral palsy and autism. "Normal" people mistakenly think this is because I feel sorry or them or because I think their disabilities are "worse" than mine. I do not feel sorry for them nor do I believe they have it worse than me. I've learned the severity of a disability is largely relative to the person who is living with it. Plainly put, I am inspired by the sheer determination and hope of the people I know who live with these challenges and who do not allow other people's lack of expectations limit what they expect of themselves.

I have learned that art and writing are my strongest, best and most effective in my arsenal of pain management. (The collage to your left for instance got me a new anti-dressant when I hauled it in to show it to my headshrinker..heh.) Often I can work on a collage or assemblage or essay for several hours before I realize it's time for a pain pill or a rest. Art was and continues to be a huge part of my healing process. It helps me feel more centered and serene and continues to sustain me through challenges and changes. It has allowed me to take the small steps that were necessary for me to reconnect with the world after my injury. The more I create; I become more familiar with my art and the creative process. If I had not had my visual art to retreat to for solace and expression in the months when I was unable to sit and write, I can't imagine I would have been able to make the strides in healing and confidence I now have in my work and in my new life.

I learned that love really does play an important part of healing well. Without Manthing 's quiet, steady support, I doubt my recovery from the spine surgeries would have gone well. It wasn't easy but he stood beside me and supported me, often without my realizing it. Without his love and caring I doubt my recovery from the spine surgeries and all their complications, would have gone well as well as they did. It wasn't easy but he stood beside me and supported me and loved me when I felt unlovable. And still does. Everyday.

Maybe I have come to understand I will never climb a pyramid in Egypt or visit Antarctica. I may never be the woman I once dreamed I would become or even the kind, bohemian grandmother who lives down the street doling out irreverant wisdom to inquiring minds. I may never write the best selling book that will help millions. I will never be a saint. But I will always be a good listener, a faithful friend, one who speaks straight and often true, one whose word can be trusted, one who loves wholly and one who never truly loses faith or abandons hope entirely. I will always stand for the weak, speak for those who have no voice, work to protect the innocent. And I will always be a person filled conflicting and sometimes contradictory characteristics, a person prone to deep solitudes, tinged with sadness, a person whose life is filled with moments of gorgeous brilliance, happy accidents and moments of impenetrable, inconsolable darkness. I am more than I ever hoped to be but less than I have dreamed.

And there's a good chance none of it would have happened, none of it would have been realized,  if I hadn't become disabled.

*All of theses images are assemblages and collages created by me about my disability.

Life A Few Years Later: 2nd Annual Blogging Against Disablism Day

Disablism is the British equivalent of the American term Ableism used to describe discrimination against people with disabilities. Ableism discriminates, devalues and denigrates in the same way racism and sexism do. Ableism treats those without disabilities as the standard of “normal’, against which everyone is measured.

With many thanks to Diary of a Goldfish for beginning this and coordinating it.

____________________________________________

Monday, March 19, 2001

To whom it may concern-

I am tired. I am tired of not being to clean my house. I am tired of not being able to wash a full load of dishes.I am tired of keeping a positive attitude. I am tired of trying not to be too much of a burden on my loved ones. I am tired of reminding myself there are others who have it much worse than me. I am tired of struggling to get out of bed in the morning. I am tired of having to use a motorized cart to do my grocery shopping. I am tired of pain. I am tired of having to sit down and rest every 10 minutes when we go to the mall. I am tired of being an albatross. I am tired of walking into a new store or restaurant and looking for the bathroom, "just in case". I am tired of being fat. I am tired of not being able to exercise enough to burn enough calories to not be fat anymore. I am tired of being awakened a half a dozen times at night because of leg and foot spasms, cramps, twitching and pain that WILL NOT GO AWAY.

I am tired of looking ahead. I am tired of needing to use a handicapped placard. I am tired of pretending not to notice people watching me to see if I really am disabled. I am tired of the looks in old friends' eyes when they remember how I used to be and compare it to what they see before them now. I am tired of strangers asking me if I am really disabled. I am tired of fighting with an insurance company and with my attorney just get treatment I desperately need. I am tired of pain. I am tired of having to take medication.I am tired of losing my balance. I am tired of watching the weather channel to see what kind of pain the weather will bring each day. I am tired of "rating my pain".

I am tired of needles and doctors and tests and procedures and hospitals and physical therapy. I am tired of medical double talk. I am tired of feeling new pains. I am tired of numbness. I am tired of being tired. I am tired of asking for help. I am tired of beating myself up for not being the person I used to be. I am tired of having special needs. I am tired of not feeling whole. I am tired of not being "normal". I  am tired of not being able to…(fill in the blank).


I am really tired and I just want my life back.

______________________________________

I wrote this and included it in my first assemblage (below) about disabilities which was created in 2002, two years after my last spinal surgery. Since then I have learned I have something called and generally referred to as "accquired disabilities", meaning I wasn't born fucked up. These disabilities are also referred to as largely "hidden and invisible", meaning that I have no discerning or visible evidence or deformity that would suggest that I am anything but "healthy and normal", albeit a bit fat. This is especially true if I am minus a cane or my motorized scooter until you see me get up and walk. Because of this, I have had to learn how to be disabled. My cane became "The Legitimizer". The scooter, the difference between enjoying days out instead of getting through them. Life changes.

I have learned that an incomplete spinal cord injury is not enough to make you disabled in the eyes of the Social Security Administration. However becoming chronically dysthymic (chronically depressed) and mildly agoraphobic because of the incomplete spinal cord injury does. I have learned more about pain that I ever thought existed. I hate pain.  I always have. Before becoming disabled at 11 years sober,  I drank and used drugs for 10 years in attempts to eradicate the emotional pain of an unhappy and troubled childhood and physical pain was something you took a pill for and it went away.  Now, I know about chronic pain and nerve pain and that you can still feel pain in the numb places. I've learned pain also buzzes, vibrates, and burns. I know about pain that never goes away. Syndromes and terms for the complications of multiple spine surgeries have appeared and changed and remained the same for the last several years: Cauda Equine Syndrome; chronic pain and depression; suspected mild fibromyalgia,; blah, blah, blah...

I've learned some of your oldest friends completely disappear because they can't cope with the "new you" and others find their way back to discover you aren't the same you they once knew. Sometimes, you're lucky and they take the time to get to know you again. Sometimes, you're not.

I have learned that within the "disabled community" there is discrimination. For example, I have been told I am not really disabled because I am not in a wheelchair or  paralyzed in someway. I have been told that because I appear to function fairly well most of the time and work hard not to let my disabilities interfere with my life, I must not hurt as bad or be as disabled as I tell people. These things have been said to me by other people with and without disabilities.  It's as though because I can walk, control my pain fairly well through drug therapy and sheer endurance, and manage to keep a smile on face and a sense of humor most of the time, I can't be as disabled as I say.

I have also learned there are people who want to stay disabled not only in body but in mind. They remain stuck for the rest of their lives in chronic pain support groups and chasing the illusion of the magic pill that will make it so they can "live life again". I've relearned the vast difference in powerlessness and helplessness. If I had spent the last several years waiting around "to live again" instead of just living again regardless of circumstances or pride, I would still be waiting.

I've also learned I can't abide the attitudes and excuses that exist for people with disabilities which prevent and in some cases enable them from having any expectations of what they can do or accomplish. Anyone who knows me, knows that I have a special place in my heart for people who live with cerebral palsy and autism. "Normal" people mistakenly think this is because I feel sorry or them or because I think their disabilities are "worse" than mine. I do not feel sorry for them nor do I believe they have it worse than me. I've learned the severity of a disability is largely relative to the person who is living with it. Plainly put, I am inspired by the sheer determination and hope of the people I know who live with these challenges and who do not allow other people's lack of expectations limit what they expect of themselves.

I have learned that art and writing are my strongest, best and most effective in my arsenal of pain management. (The collage to your left for instance got me a new anti-dressant when I hauled it in to show it to my headshrinker..heh.) Often I can work on a collage or assemblage or essay for several hours before I realize it's time for a pain pill or a rest. Art was and continues to be a huge part of my healing process. It helps me feel more centered and serene and continues to sustain me through challenges and changes. It has allowed me to take the small steps that were necessary for me to reconnect with the world after my injury. The more I create; I become more familiar with my art and the creative process. If I had not had my visual art to retreat to for solace and expression in the months when I was unable to sit and write, I can't imagine I would have been able to make the strides in healing and confidence I now have in my work and in my new life.

I learned that love really does play an important part of healing well.  Without Manthing 's quiet, steady support, I doubt my recovery from the spine surgeries  would have gone well. It wasn't easy but he stood beside me and supported me, often without my realizing it. Without his love and caring I doubt my recovery from the spine surgeries and all their complications, would have gone well as well as they did. It wasn't easy but he stood beside me and supported me and loved me when I felt unlovable. And still does. Everyday.

Maybe I have come to understand I will never climb a pyramid in Egypt or visit Antarctica. I may never be the woman I once dreamed I would become or even the kind, bohemian grandmother who lives down the street doling out irreverant wisdom to inquiring minds. I may never write the best selling book that will help millions. I will never be a saint. But I will always be a good listener, a faithful friend, one who speaks straight and often true, one whose word can be trusted, one who loves wholly and one who never truly loses faith or abandons hope entirely. I will always stand for the weak, speak for those who have no voice, work to protect the innocent. And I will always be a person filled conflicting and sometimes contradictory characteristics, a person prone to deep solitudes, tinged with sadness, a person whose life is filled with moments of  gorgeous brilliance, happy accidents and moments of impenetrable, inconsolable darkness. I am  more than I ever hoped to be but less than I have dreamed.

And there's a good chance none of it would have happened, none of it would have been realized,  if I hadn't become disabled.

There are days...

My days pass pretty uneventfully. I get up do my job, write, make art, play domestic goddess, looking after Manthing and the critters.

Then there are there days when things happen that really make me wonder how people even draw breath on their own.

 

 (phone rings)

“Hi, this is Kris.”

 “Ms. Spencer?”

 “This is she.”

 “Ms. Spencer, this is Lisa Dingwhartz in So & So County public schools human resources office”.

 “Okay.”

 “Ms. Spencer, I am looking over an e-mail you sent to Elsie Blah Blah about fingerprinting.”

 “Okay.”

 “Well it seems your paperwork is incomplete.”

 “I filled out everything the teachers I am working with gave me to fill out and they forwarded it to you.”

 “How did they forward it?”

 “I imagine by whatever school mail system you have in place for your schools.”

 “Well, your I-9 is incomplete.”

 “Okay.”

 “Did you fill out tax papers?”

 “Yes. I filled out a W-2 and some form specific to Sos & So County Public Schools and whatever else was in the folder to be filled out and signed.”

 “When can you come in and get fingerprinted?”

 “Where is the Human Resources office?”

 “We are located on Bumfuck Egypt  Rd. in So & So County.”

 “Well as I said in the e-mail, I am somewhat disabled and not allowed to drive. So & So County is not accessible to people with disabilities who use public transportation to get around. So what do you suggest?”

 “Well how do you get to the high school to perform your duties? The school is not accessible by public transportation either, you know.”

 “Yes.  I am well aware of that.  I had to set up the transportation. A grant pays to hire a transportation company to transport me.  But the grant will probably not pay for me to go out to BFE  Rd to be fingerprinted because it is not directly related to teaching the art class.”

 “I understand you are disabled but our building is accessible and being disabled does not excuse you from following procedure. We have a policy in place that requires you to be fingerprinted and have a complete I-9.”

 “Okay. Your building is accessible. Getting to your office is NOT.  I am not using my disability to circumvent any policy and find it insulting that you assume that is what I am doing.  Do you have any suggestions? I do not live in So & So County.  I live clear across town in ANOTHER county that allows public paratransit transportation in their county. I have also already been teaching at the school for 4 weeks and have yet to be paid for it.”

“I didn't assume anything; you probably haven’t been paid because your paperwork is incomplete.”

 “So, what you are telling me Ms. Dingwhartz, is that because paperwork isn’t complete and you have no fingerprints, I am not going to be paid?”

 “No, that is not what I am saying. We have to pay you because you performed work for the school.  But we have a policy in place that you need to be fingerprinted and your I-9 needs to be completed. If you do not submit to the fingerprints, you'll have a history of not being checked out and you won't be able to work for So & So County Public Schools.”

 “Okay. So what I am hearing here is that until the fingerprints are taken and the I-9 is completed properly, I shouldn’t expect a check.”

 “Ms. Spencer,  that is not what I am saying. Did you hear those words come out of my mouth? I said your I-9 is not complete and you need to be fingerprinted.”

 “Let's ignore the obvious. What is this I-9 you keep mentioning?”

 “It’s the form you fill out that proves you are a citizen of the United States but it is incomplete.”

 “I filled that form out.  How is it incomplete?”

 “Well, let me see if I have it BEFORE me and I’ll tell you (sound of shuffling papers). I don’t seem to have it here but our office that processes the I-9 says it isn’t complete, so it isn’t".

 “I believe your office is mistaken.  That form is a no-brainer and I know I filled it out with all the necessary information because I hate that form. It’s invasive and I don’t care much for it. So I remember every time I am forced to fill that form out. Is the supporting documentation missing or what?”

 “All I have here is a note that says it is incomplete. When can you come in to complete it and file your fingerprints?”

 “As I said before, I am somewhat disabled and not allowed to drive. So & So County is not accessible to people with disabilities who must use public transportation to get around. Any unscheduled trip there must be planned. So what do you suggest? Do I need pay for a cab to take me there when there are probably other options that can be explored?”

 “I think I am going to turn this situation over to the teacher you are working with so you can quit yelling at me and she can fix this. We are getting nowhere.”

 “Ms. Dingwhartz, I am not yelling at you.  I am speaking sharply, letting you know I am unhappy with the way in which this has been handled.  I see no reason why I need to pretend I am happy with a clearly poor situation when I am not.”

 “Apparently you are unwilling to work with me to resolve this situation so I will contact the teacher…”

 “I am not at all unwilling to work to resolve this situation. I have made attempts to work to resolve this situation several times.  You keep talking to me about incompleted forms and the school systems policy.  I filled out the paperwork presented to me and did what I was asked to do.”

 “Like I said, I will contact the teacher and she can deal with this in the way she finds appropriate.”

 “Okay. You follow whatever protocol you need to follow.”

 “I can assure you I will. You will still need to be fingerprinted and the forms will need to be completed and I will let the teacher know...”

 (CLICK)

 
What a fucking nitwit.

 To be continued. I’m sure.