mutated hands

The weird pains in my hand lately make me feel like I'm going to mutate, metamorphosize into something great.  Except that it also reminds me of reading a book where a man cut his hand off as an offering to God.  There is a balance, but karma doesn't work like those scales of justice, blindfolded or not.

The ring finger aches the most.  It is on my left hand.  I will not psychoanalyze the possibilities.  The entire wrist hurts anyway.

It is a strange thing to have hurting hands.  It seems like cracking the knuckles should alleviate it some, but it never does.  Still I do it.  What else is there?

Leaving my hand still, it twitches a bit.  Tiny tremors, nothing much really.  And the fingers turn into a claw, the ring finger bent sticking up higher than the others, the pinky far apart, segmented.

From carpal tunnel, the thumbs, but they are improving from yoga.  I hope that something at class tonight will help my fingers.  They throb as I type.

Transabled

I came across this site, transabled.org, while browsing the internet for a colleague who did a piece on BIID and Melody Gilbert's documentary Whole.  I don't much feel like describing BIID, so I'm copying from the transabled.org website:

Body Identity Integrity Disorder, or BIID, is a condition where people who have a "normal" able body need to have a physical impairment. BIID is most often expressed by a need to have an amputation, to be paraplegic, to be deaf, or to be blind. It can be a highly disabling condition where individuals are thrown in deep depression because of the anguish caused by the dichotomy between their psyche and their body.


Perhaps the strongest analogy we can use to explain this need is to compare BIID to Gender Identity Disorder (GID). Someone who has BIID is very much like transsexuals who are in the wrong body and need to "change" sex. The causes are obviously different, but GID is perhaps the best known condition that most resembles BIID.


There is very little research that has been done on BIID at this point. You may find most of what is available on http://biid-info.org. As such, it is not sure if this is a psychological condition or a neurological condition. There is evidence from neurologists in San Diego that there is a neurological aspect to BIID. While many people feel this is a psychological condition, it has not been classified as such in any of the major manual of psychological conditions.


There are no psychotherapies nor pharmacotherapies that have been proven to provide any relief, much less cure, for BIID.


The only thing that seems to provide relief is to acquire the impairment needed.


In any case, I ended up reading about this gal Chloe on the site who has chronic pain.  She wraps her legs in bandages and such.  I haven't really done a good job reading around yet, as I just came across the site yesterday, but I was just really fascinated by the possibilities for persons with chronic pain.  In any case, I wrote a letter to the site owner, though their "contact us" form appears not to be working, so this is probably the only place it exists.  Please, no judgments.  Just let the idea sit with you for a bit because if you don't know about BIID the learning can take longer than you think.  Much love to all.

Letter

Before reading the stories on this site, I was already a strong supporter of persons with BIID, but I didn't realize how many parallels existed between the person with disability and person needing disability.  I'm sure that most people with disabilities are, like myself, initially put off on learning that anyone would want our dismal plights, but the reality of need versus want set in quite quickly for me.  Reading through this site, however, I realized the degree of transabled-ness in myself, particularly through understanding Chloe's feelings as a person with chronic pain like myself. 

The frustrations of having an invisible disability are ever present and irritating, to say the least.  The being looked at like you are "faking" it, the being questioned about why the hell you'd need a companion animal, and the guffaws that accompany requests for accommodations.  I used to wear my neck brace after I needed it because I just wanted people to see that the pain persisted and would always persist.  Then I got a TENS device and began wearing it incessantly, though people seemed to dismiss this as a true sign of pain as well.  There came this desire to have something to show my pain, bandages or a wheelchair or just blood.  Reading through Chloe's story, it finally occurred to me that these so-called desires that plagued my psyche were actually a NEED to some extent.  If I truly explore my thoughts and constant depression at being seen as "able-bodied" I may realize that I too am transabled. 

I am so proud of the people on this site for taking control of their bodies, and I hope that I can learn from these writers and see role models manifested in their stories.  Thank you so much for putting together this beautiful resource.  I wish you all the best.

Amanda

Bad updater

The truth of the matter is I have just been in so much pain lately that I don't even want to write about it.  Well, I do.  Just not straightforwardly.  More in poems and other writings. 

Migraines have returned.  Been taking meds. 

Anyway, I started hot yoga about three months ago.  I think it helps, but then the pain has been quite bad anyway.  Sometimes, I feel compelled to just say that something is helping, like one of the teachers giving me acupressure.  But this feeling more comes from myself-- internalized panopticon!  Or maybe it is just trying to hope and convince myself that things will get more deal-with-able.

Anyway, I'll be updating more, because I do have quite a few thoughts about BIID and Michelle Bachmann's high heel-induced migraines (groan!).

Pain Retreat for Grown Ups!

A while back, I expressed frustration at having difficulty finding any pain retreats for adults.  Well, today I found a center that offers them.  Apparently the San Francisco Zen Center offers a series of classes for folks with chronic pain, chronic health issues, depression, anxiety, and other conditions.  The retreat I've mostly been looking at are "A Day of Practice for People Who Think They Can't Sit Because of Pain and Chronic Illness" and "Helping Women Live with Pain and Despair."  As far as I can tell, these particular retreats are not being offered this summer, but it looks like some similar themes are being addressed, such as "Transforming Depression and Anxiety: A Path of Skillful Compassion at GGF" and "Meeting Trauma and Finding Balance: A Somatic Approach to Zen Practice."

In any case, I will be trying to attend one of these retreats some time next year, as I'll be moving to the area (it looks like the retreats are not all based in San Francisco but in other parts of California as well).  I'll let you know how they work out, if at all.

Here is the info for the pain retreat, which appears to have been last held in 2007. I hope they have another for me to try!:

Tassajara Retreat with Darlene Cohen

Written by City Center Staff

HELPING WOMEN LIVE WITH PAIN AND DESPAIR with Darlen Cohen May 14-16 at Tassajara Zen Mountain Center Grief, anxiety, depression, physical pain, or chronic illness: How do we and our health practitioners deal with such difficult states of mind and body? During this conference we will: 1. Provide specific information regarding the most common pain syndromes in women over the life cycle; 2. Discuss approaches to patient education that target women’s unique needs; 3. Review treatment options for women, including pharmacologic approaches, behavioral interventions and complementary medicine; 4. Explore meditation practice as a palliative to pain. Meditation practice encourages us to live rich and satisfying lives right in the middle of pain. Surrounded by the natural beauty of the Tassajara mountain valley retreat, we will use commonplace activities like eating, walking, talking to develop meditative consciousness and discuss the importance of specific types of pleasure and comfort in lives made difficult with recurring pain and stress. This retreat is for: Women dealing with chronic pain; Health care providers helping women in chronic pain; Non-physicians interested in developing their own resources to help others; Friends or family members who are called upon to offer and sustain a seemingly endless supply of compassion. 6 Behavioral Science CEUs are available for this retreat. Retreat tuition fee $120, Room and Board starts at $185 for the weekend. Darlene Cohen, M.A., is a Zen priest trained at the San Francisco Zen Center. Currently she gives dharma talks and seminars emphasizing mindfulness at healthcare facilities and meditation centers throughout the continental U.S,  She also leads 6 regular meditation groups, 2 for people in chronic pain.  She has written 3 books on the relevance of meditation practice to dealing with physical pain and mental anguish.  See www.darlenecohen.net for audio dharma talks, published articles, and schedule of events

Last Updated ( Wednesday, 14 February 2007 )

Service Animals- California

An interesting piece on service animals from the perspective of an apartment manager.  This piece actually makes me feel a lot more powerful as a person with disability seeking to have a cat live with me as a service animal.  They really DO make the difference, at least in my case.  No haters please-- let's just hear some other stories about folks who got documentation/permission for service animals.

From: http://www.msslc.com/animals.html

Service Animals in a "No Pets" Apartment

By Martin S. Snitow

"I want to have a service animal [dog] [cat]," is a request that is growing more common. Landlords who have a "no pets" policy cannot refuse to allow a disabled person to have a service animal. 24 CFR § 100.204(b). This is an illustration of the federal law that a landlord must make a "reasonable accommodation" to allow a disabled tenant to use and enjoy a dwelling on an equal basis with tenants who are not disabled. 42 U.S.C. § 3604(f)(3)(B).

At first glance, it may seem strange to say that a disabled tenant who is permitted to have a dog is on an equal basis with other tenants who are not allowed any animal. But a service animal is legally very different from a "pet."

Under California law, a "service dog" is any dog individually trained to the requirements of the individual with a disability. California also recognizes guide dogs for the blind and signal dogs (which alert deaf or hearing impaired persons to intruders or sounds.) Civil Code § 54.1(b)(6)(C). California provides for issuance of a special tag to owners or trainers of assistance dogs, a term that includes guide dogs, signal dogs and service dogs. Food & Agriculture Law §§ 30850-30852. Landlords may not refuse to rent to disabled people with assistance dogs. Civil Code § 54.1(b)(6)(A).

Life would be simpler if a landlord could enforce a rule stating: "No animals except assistance dogs with an official tag." However the California law prohibiting discrimination against disabled people with assistance dogs does not say that every assistance dog must have the special tag. Federal law does not even require the assistance animal to be a dog, although in practice most are. A federal appeals court has ruled that a landlord cannot require that a service dog have a certificate from a state-licensed training school. Bronk v. Ineichen (7th Cir., 1995) 54 F.3d 425. By analogy, federal law also would not permit a landlord to demand that an assistance dog have an official tag.

In a recent case, an apartment manager asked a disabled applicant for a document showing that she needs her dog because of her disability. This applicant had trained her dog herself and had no documents from a training school. She also had not licensed her dog and thus did not have an assistance dog tag. The manager did not say what kind of document he wanted. This landlord already was renting to several other disabled tenants. He had accommodated them with a special stove bought for one and grab bars installed for others. The applicant took the demand for a document she did not have as a rejection, and sued.

Any landlord faced with a disabled applicant or tenant requesting an accommodation must tread carefully. A landlord cannot ask whether the person is disabled, what kind of disability he or she has or how severe the disability is. 24 CFR § 100.202 (c). California Government Code § 12955 (b). It is questionable whether a landlord may even dispute the tenant's decision that he or she needs a service dog. Fortunately, the manager in this case did none of these things. He simply asked the applicant to show a document that her dog was a service dog.

A landlord should obtain some evidence that an animal permitted as an exception to a "no pets" policy is a service animal. Other tenants may also want to have animals which are not assistance dogs or other service animals. If you permit one applicant to have a dog without some evidence that it is a service animal, others may feel discriminated against. The applicant in this case was white and childless. Families with children and persons of color who might want a dog could have reason to complain if this applicant was allowed a dog and they were not.

Several months after the applicant filed suit, a federal appeals court ruled in a different case: "If a landlord is skeptical of a tenant's alleged disability or the landlord's ability to provide an accommodation, it is incumbent upon the landlord to request documentation or open a dialogue." Jankowski Lee & Associates v. Cisneros (7th Cir., 1996) 91 F.3d 891. Isn't this exactly what the manager did here? I certainly think so. Does the decision resolve all questions? No, it does not.

Even if you are "opening a dialogue" you still cannot ask about the disability. What can you say? When a tenant says he or she wants to have a dog or other animal you can ask for documents to show this is a reasonable accommodation for the tenant. You can ask the tenant to explain why having the animal is necessary for him or her to use or enjoy the dwelling. Let the tenant explain the situation and ask no questions about the disability.

This applicant sought damages for expenses such as apartment hunting and added commuting costs because the apartment she eventually found was further from her work. She asked for emotional distress damages and requested that all of these damages be multiplied by three under California's Unruh Civil Rights Act, Civil Code § 52. Then she asked that her damages be trebled again under a California statute concerning unfair business practices against the disabled or seniors. Civil Code § 3345. In addition, the applicant sought punitive damages and an award of attorney fees. While the manager did just what the federal appeals court suggested, the landlord faced an potentially unlimited judgment if he lost the trial. Although he had a good case, the landlord decided to settle.

How can you prevent this from happening to you? Unfortunately there is no law or regulation saying exactly what a landlord can or cannot do. A federal appeals court in a case from California ruled that whether a requested accommodation is reasonable is a question of fact, determined by a close examination of the circumstances. United States v. California Mobile Home Park Management Co. (9th Cir., 1994) 29 F.3d 1413. Essentially, only a court decision can say whether a landlord must allow a particular animal.
Is this the end of "no pets" rules? I think there is still something a landlord can do to prohibit pets while protecting him or herself. I suggest that a landlord in California can set the following rule:

"We normally allow no animals without an official assistance dog license or tag. If you have a guide dog, signal dog or service dog, please show us the license and tag. They are issued by the county animal control department or county clerk. If you need a service animal that does not have an assistance dog license or tag, please tell us in a letter or write on the back of your application why this is a reasonable accommodation for your disability."

Give a copy of this rule in writing to anyone who asks to have an animal, whether or not they appear disabled. Someone may be disabled without it being obvious to you. Let me repeat: you cannot ask applicants or tenants whether, in what way or how seriously they are disabled. If a tenant has a dog with an assistance dog license or tag, photocopy the license, copy the tag number and give permission right away. If there is no license or tag but the tenant claims the animal is a reasonable accommodation for a disability, you should immediately get advice from a lawyer who is familiar with fair housing laws.

Copyright © 1997 Martin S. Snitow Law Corporation. All rights reserved.

Road Trip

Well, I guess this long drive went better than others, but it was much shorter.  We drove from Seattle to Portland on Saturday, then back Sunday.  It's only three hours or so, but really any length hurts my neck.  Trying to prevent massive pain (like last time-- with the vomiting and what not), I used this handy neck pillow from Rick Steves:

 

To be brief- it did not work.  The pillow looks like it goes all the way around with padding, but there is actually ZERO padding on the back of the neck, where I wanted it most!  In the picture, you can see a big pad on the part of the pillow closest to us, which is basically all the padding the pillow has.  There is a TINY bit of padding on the opposite side, but that basically ends up under your chin.  If anything, I'd say this pillow did more harm than good, as it causes you to twist your neck trying to get comfortable and rest somehow.  Lame.

On the plus side, we stayed at the Hilton, and their pillows are amazing.  Seriously.  I woke up without neck pain for the first time in years.  My mom was clever enough to ask the folks there if there was someplace to buy these glorious pillows, and apparently you can get them at www.hiltontohome.com.  Of course, they are $70 (includes shipping)...  There really is no getting around paying for quality, is there?

Anyway, I have two other travel pillows to try out before going on a plane for Chicago this Wednesday.  Wish me luck!

nociceptors 3

reflection light burning
as the drip and drip drip
the sink drips echo inside
burns at the brain flesh
little hungry creature
clinging to my back
tightly squeezing out
the juices and the thoughts
ascends upward the spine
treppanative talons
drinking in subjectivity
bolder bright is coming
sired into oblivion

Hungry Pain

Post-trigger point injection-ing, I find myself constantly wanting to eat.  The hunter is really more of an extreme pain, but, for some reason, it sometimes manifests as this insatiable hunger.  Really, the best solution to terrible pain, if one just wants it to go away and not worry about any other effect, is to get drunk and sleep it off.  Sleep through the hangover and everything. 

But there is a great nausea that accompanies this hunger.  I grow hungrier as I eat, then lose it all through one form or another.  TMI, I know, but there's the truth of it.

Don't want to do anything but sleep and eat.  Mock my cats' behavior.

Hungry Pain

eating at the fingers
licking up the spilt wonders
biting away at the frontal lobe

strange sort of trepanning
the one long tooth drills
slurps away the brain matter

trying to fill the space
I think and think and think
but the ideas are consumed
helium from a blue balloon

Snow!

I love the snow.  Really love it.  Not just for the snow days it brings or the way it likes to pull everything to a stop and let us reflect on our lives.  I love the snow because it swallows the world's sounds and covers up all of our industrial footprints in a sheet of clean white.  I love that it seems to glow as it reflects the moon's light.  I love the way it captures our footprints and makes it clear that we really have been in this world.

If I were to be perfectly honest, I am a summer person.  I don't enjoy being cold, although I layered today to cover up the effects.

But it is a real shame you can't do the same for the pain that this beautiful weather brings.  I've noticed much more this year how my neck begins to ache before it snows and progresses as the flakes drift down from the sky.  Today was a terrible agony yet also a wonderful beauty.  Thus the concept of fractured aesthetics or the beautiful as broken emerges.

In any case, I've had my pain pills and a few drinks, so will sleep through the worst of this pain.  Let us hope for another snow day tomorrow to recover and marvel.

Going back to acupuncture

Well, I didn't go to acupuncture for a few weeks, and heading back was really a pain. ... Seriously though, it hurt a terrible lot.  I got super stiff the next day.  And my hands hurt again.

I hope that I didn't make things too much worse.  But my back and neck have been real bad this week so far.  And I only have one hot and cold pack left!  I am saving it for class on Wednesday.  Although, I guess I could go pick some more up.

Stress has been crazy what with hearing back from MFA and PhD programs, so I'm sure that did the opposite of help the situation.

Moral of story: don't skip acupuncture. Even if you're sick.

But seriously, you shouldn't go to the acupuncturist if you're sick, because s/he works with her/his hands, and will have to lose work.  Because zie can't go in!  (hurrah for gender neutral pronouns).

Will take solace in my selflessness, I suppose, as I ache away.

Depression hurts, Cymbalta can help?? Can it?

I've just learned that my anti-depressant, Cymbalta, may be to blame for my inability to sleep and increased anxiety.  Botheration!  Here is the vicious cycle: my neck hurts so I get sad, I take anti-depressants, I can't sleep so my pain gets worse, so I take more anti-depressants, so I sleep even more poorly.  Ugh.  It is annoying because the same things that help me deal with stress (i.e. working out) are the things I have to cut out of my schedule when I get super busy.  So then I get super sore from giving up the thing and from stress.  Oh, these crazy cycles.

I went to see a psychiatrist last week because my depression's been pretty bad- which is very normal amongst folks with CP.  But he is pretty sure that the lack of "phase 3 and 4" sleep is what mostly causes my sadness and extra hurt.  So we are trying sleeping pills.  I really need to update my medications list...

I've also been sick and ducking out of seeing my acupuncturist.  Which means my pain has stopped spreading and being all fibromyalgia versus myofascial pain syndrome-y.  I scheduled to see her Friday though- here's hoping it'll help!

Also need to call my pain dr to set up an appt.  And make an appt to start PT again at some point.  Oops.

Cutting

Hard to know what constitutes "cutting," but I suppose I just mean to say "self-mutilation."  Which also has some particular nuances.

Anyway, going a bit more personal, to the point of where I'm pretty embarrassed, I must say that I do do a wee bit of it.  I'm inclined to believe that most people do to some extent, such as the pulling off of scabs, the ripping away of hangnails, the pressing down on bruises.  There is such power in the creation of pain in oneself.  Of course, I mean not to exclude bdsm, it's just that there is a separation of reason behind bdsm-related pain-making(i.e. orgasm) and pain-making in the self for the sole purpose of pain making (or stress relief.  I'm not sure what all the psychological reasons actually are).

In any case, I've gotten into this terrible habit, for many years now, of scratching at my scalp until it bleeds.  Then I pull of the scabs.  I used to do it with my eyebrows, but it was pretty obvious.  People can't really see the top of your head though.  Well, sometimes they can.

I wish I knew why I did this or how I could stop or whether or not it was really a sign of something terribly sick in my head, but I'm really inclined to think it must be related to the pain.  There's just such a need to create pain-- take charge of pain-making.  There's just a certain degree of peace in it.

Okay now, please no hateful comments.  This is a big share for me- I have much guilt.  Mean comments will be deleted.

Pain Spreading-ness

Well, maybe acupuncture isn't so much helping as changing the way the pain is happening.  My neck has definitely been feeling a wee bit better in general, but I'm not so sure the pain has actually gone away.

It seems more like the pain is just spreading itself around more.  Lately, my hands have been hurting quite badly, as well as my knees and hips.  I still have pretty bad pain in my neck and shoulders as well, so it's all very annoying.

Really all that there's been is the lack of migraine, but I don't really get them that often anyway.  I'm hoping that sticking with the acupuncture will make it suddenly start working better.  I've also been a bit sick, so that might be to blame too. 

It is all very strange.

Spoke too soon?

Massive headache today.  Have been super nauseous all day.  Hoping that it's just from the flu thing going around, but I'm worried I might've had a bad reaction to acupuncture yesterday.  We'll see how it is tomorrow.

Of course, I also didn't work out today, which never helps.  Also haven't stretched.  Or done any of my other neck fixing things.

Additionally, I still haven't called the doctor.  Am pretty well a failure at caring for my neck at the moment.  Suppose that is just how it goes when things are busy.  That, and dropping my subjects sentence-wise.

Well, I'm sure I'll pay for it next week, 'cause I have a lot of sitting to do.  Lectures and classes and meetings galore.  Am going to have to make sure to work out a lot.  Good plan.

Also, can't forget to give list of medications to my acupuncturist!  Must remember!!!

Acupuncture and Migraines

I think that acupuncture may have stopped my migraines.

... hope I'm not jinxing it or anything, but I really haven't had a bad headache even in a week or so. Actually, I think the acupuncture has been helping a lot.  Well, I guess by that I mean, helping at all.  There is a slight improvement in general, but any improvement is pretty exciting.

These needles do not hurt.  Which kinda leads me to believe my previous acupuncturist may not have been terribly adept.  Also, my current acupuncturist takes care that I'm warm, and plays music that isn't "Pure Moods."  Thank goodness.

Also, interestingly, she has me going in twice a week.  This happened with my last PT as well.  Is this a new trend?  I'm used to going in once a week for appointments-- this is time consuming!  Do need to schedule with new PT as well.  Hrm.

Keep forgetting to call dr.

I'm pretty sure that must mean something, psychologically speaking.  But seriously, I've forgotten to call my pain doctor to check when our next appointment is and to fix my medication error for the past two days.  Oh.  It felt like longer before I wrote it out.

Still.  It's kinda a big deal, since I need to fix my medication and all.  Have been sans p.m. pain meds for a bit-- almost a week.  Plus, I need to get my trigger point injections.  And schedule PT. 

It is pretty irritating to forget such things. 

Acupuncture

I think acupuncture went pretty well today.  It got sore and all afterward with dehydration and all that fun-ness, but it is feeling a bit better now.  She has told me that sometimes it takes longer for people to start reaction to the treatments-- in my case a few days, it seems.

In any case, the treatments are relaxing.  The last place I went was quite painful, and this one hurts none at all.  And the music is not the dreaded "Pure Moods" (played by every pain care provider from here to Tuscany).  That is always a plus.

It isn't terribly convenient to get there, but isn't so bad as it could be.  My pain dr. is pretty durned inconvenient to reach. 

The real trouble is trying to sleep better.  Silly pain keeps keeping me up!  Grr!

Comments...

Just realized that I have been getting some comments, but didn't have settings set up so that I can see them.  Please do keep commenting-- I will now receive emails letting me know what you've said :)  Thanks for all the well-wishing.  It is nice to feel a part of a community (as opposed to apart from a community).

Mood Swings

Well, I am feeling much better at the moment.  Possibly because I just chowed down on some more pain pills and took my second daily antidepressant.  Let's chalk it up to philosophizing though.

It is January, and soon the spring will come.  It is already warming up here in Seattle.  The heat always helps so much with many pain conditions.  Possible plusses for not getting into PhD school in Seattle-- I could end up in the much warmer Southern California. 

Am working hard to see things as plus-plusses versus minus-minusses (or is it win-wins versus lose-loses?  Either way, it looks silly in plural).  Big example= If my pain never gets any better, I will at least get to stay in this supportive chronic pain community and meet lots of people via seeing a million health care professionals.  It is also good for my research. 

So... even though the last PT went very badly in the end, I will not regret meeting folks there, especially the very kind therapy dog :)

With me luck on trying to keep positive!!!

(also, am going to be less strict about use of emoticons and "..."'s and exclamation points.  They make me happy, so I'm going to just do it!)

Drowning

That is the truth.  Totally overwhelmed by everything right now, and most of it, I'm sure, is just because the pain has been so bad.  Plus, I'm going to have to start committing time to go to acupuncture twice a week, and it isn't so close by.  And I'm going to have to start PT again-- what if they want me to go in twice a week as well?  Plus, I should start yoga because my dr says so.  And I really think massage would help.

Gyah!

The worst I suppose is just that the pain can bring such depression.  I've been feeling pretty confident the last few years in general, and all of a sudden I feel so terrible about myself.  Stupid things are stressing me out, and I feel like a complete idiot and failure. 

And then I get these thoughts like, "Oh, I may as well drop out of school and just work on supporting myself because who knows how it's going to be with the pain?"  With this thought behind it as though I can work on making a real life for myself next time.  Except, it isn't any kind of next life thought but the idea that I'll be better eventually.  But I probably won't be.

This post is completely useless.  Ah, another low self-esteem-y thought.  Stupid pain!

A Weeping Brain

The pain today has become unbearable.  I don't much know what else I can do but hope that acupuncture will be more effective tomorrow than it was on Saturday.  The pain has gotten to that annoying point where it is constantly distracting me with self-pitying thoughts.  I constantly have a scrunched up face.

I'd really like to pen something pretty right about now.  Something that captures the true essence of pain.  But the truth is, the pain slips into all my work but never allows itself to be purposefully captured.  It is a sneaky concept.

Anyway, I go to bed in hopes of waking up in a better state tomorrow.

Heart Attack... almost

I went to the pharmacy today to pick up my prescription refills, and the pharmacist told me that my nighttime pain meds hadn't come in.  Of course, the dosage was recently increased, and I told them that it must be the case that the doctor had forgotten to call in the change.  Easy mistake, easy to fix.

So the lady went to check, then came back and told me my insurance wouldn't pay for the medication anymore. 

Well, I almost broke down right there.  These are pretty necessary pills, you see, as my doctor has stressed to me how awful it would be to stop them all.  But I decided to see the damage first, and asked the cost without insurance.

The lady rang it up, which took quite a long while, then said, "Thirty-eight dollars."

Well, it obviously could have been much worse.  So I said, "I'd like to buy it please."

"Your insurance won't pay."

"Yes, I know."  Perhaps a little too overtly annoyed, but I tried anyway. "But this is a pain medication.  May I buy it?"

Then she disappeared again to look at the computer.  When she finally came back she told me, "No.  You can't buy."

She must have noticed my confusion, for she added, "It is too soon to refill prescription."

How irritating!  I was really angry, but also relieved.  So I just told her I'd call the doctor to have her call in the increased dosage.

But honestly, they should be more careful about that sort of thing.  There's really no reason my insurance wouldn't pay a large portion of it, especially since I've got the two.  But they can be right bastards sometimes, can't they?

Taking a big gulp of air.

Getting Used to It

My back has been a mess these past few days, but I think I must be getting used to the new pain levels because I've managed to make it through working at both work and school.  I've been drinking tea almost nonstop like that must help-- maybe it really does because of the heat on my throat reaching my neck.  But I think it's become more of a defense mechanism.

The weather seems to really upset my body.  Whenever it gets really cold and particularly when it snows, I seem to have bad ache days.  But it definitely is worth it to see all that prettiness outside.  You ever notice how the snow seems to glow? 

Anyway, I suppose it is a good thing that I've become more resistant to the pain.  Or, I guess more attuned to it.  But then again, in many other ways it is a bad thing.  If the pain is to be cured, then where will I be?

The entirety of my body's rhythm will be thrown off.  I know that you can go into shock and die from too much pain, but can a similar thing happen as a result of a sudden absence of pain? 

Maybe it will instead feel like the relief of cracking a knuckle.  Or when I crack my neck and the stiffness and ache from stiffness is gone.  Like this whole thing has just been the hydrogen peroxide coming down on the infected cut for a long while, and the healing will be a pure bliss.

Who can say?  Maybe it will never go away anyway.  So, I suppose it isn't worth worrying over.

PTSD Attack

Ugh.  My neck hurts like crazy now.  Not because of anything other than tension.

This evening, my mom accidentally drove over a lane divider (wouldn't have hit anyone) and we had to ride on it for a few feet before we could get off.  You know those things right before left turn lanes where it goes up in a long bump about six inches high. 

Anyway, it scared me to death.  We weren't in any real danger, but it felt like a real car accident, you know?  My car could've been really hurt, but it seems to be alright. 

Well, my neck can't tell.  It tensed up like mad and it hurts terribly now.  Still really stressed.  It is ridiculous.

Pain Attack!

Massive pains today.  I can only imagine it is from having class again for four hours.  Or the stress of starting up school again.

Anyway, I am going to acupuncture on Saturday morning, starting up again.  Should be starting with a new PT soon too. 

..short entry.

Earrings

I've gotten in the habit lately of wearing cheap earrings in the two upper holes in my left ear.  I'm actually allergic to cheap metals, have a bad reaction to them where my ear puffs up and hurts, then bleeds when I remove the earring. 

It probably isn't a healthy practice, not in any sense, but it makes me feel so powerful.  It reminds me of something Bob Flanagan said in his poem "Why," which respond to all the questions of why he practiced bdsm (he also had cf). I'm including particular excerpts below-- I encourage you to read the poem, which is linked above:

why...

Because it feels good;[...]

because I'm sick;

because there was so much sickness;[...]

because of what's inside me;[...]

because of doctors and nurses;[...]

because my parents loved me even more when I was suffering;[...]

because I'm addicted to it;


I don't know.  In the film Sick that documents the last years of Flanagan's life, there's a piece with a young (very ill) gal named Sara who gets to meet Bob through the Make-a-Wish program.  When asked about her interest in Flanagan and bdsm, Sara responds, "I guess it's just the same thing, I think, with Bob- being able to control your body for a change, being able to control something" (191).

I mentioned in an earlier post how all sex acts as a person with chronic pain (particularly in the neck) become masochistic.  Perhaps this creation of additional, smaller, controlled pain is similar. 

I also like to think that it decreases the general pain elsewhere.  Like there's only so much pain my body can produce, and if I force some of it into my ear, the pain that can go to my neck is lessened.

Who can say?

Visiting the Frye Art Museum

Implied Violence is a performance art group based in the Seattle area that work to depict violence and pain, exploring "ecstatic states produced by ether, sleep deprivation, blows to the body, extreme exertion, endurance, alcohol, or bloodletting by medicinal leeches" ("Frye...").  The way in which this group approaches pain as a potentially beautiful and interesting topic drew me in, and I had hoped that their current exhibit, depicting pieces from their performance of the same name through artifacts, video clips, and textual explanations, would offer some incite into the connections between the creative process, art-making, and pain.

The exhibition "Yes and More and Yes and Yes and Why" builds upon the eponymous quote from Gertrude Stein's "Business in Baltimore," supposedly thematically drawing upon the ways in which repetition affect the mind.  According to Robin Held, deputy director of the Frye Art Museum, where I visited this exhibit, IV's show “connotes a heady mix of human desire, avarice, pride, despair, and striving... Its verbal construction with a dense visual result, its breathless repetition-with-a-difference, its change-within-difference, is territory long occupied by IV” ("Frye...").  The real trouble, however, was that the exhibit, unlike Stein's poetry, was neither interesting, emotionally moving, or beautiful.

Implied Violence.  "The World Turned to Ashes in His Mouth." 2010. Art Direction: Ryan Mitchell and Steven Miller. Photo: Steven Miller. 

If anything, "Yes and More and Yes and Yes and Why" helped me to better understand what Artaud doesn't mean in his "theatre of cruelty."  While he may not have intended this presentation of emotion-producing drama to become the theoretical foundation for poetry-making, he certainly didn't mean it for unattractive, entirely abstract, displays of unrealistic violence.  I felt nothing communicated through these works, particularly not that which Artaud referred to as the "unique language halfway between gesture and thought" (89). 

Certain aspects of their show were interesting in theory, such as the binding of a great dancer in a painful corset to restrict her movements such that the dance itself became a dance of pain, but realistically, the dance was more a display of someone writhing unattractively (and a bit disturbingly) on the floor.  Another piece depicted various pictures in the stage of an IV actor who stayed up three days straight with fake blood plastered on his face-- the pictures depicted how the make up naturally left his face as time progressed and how the actor grew more and more haggard-looking.

The trouble, I think, is with the pain-inducing nature of these productions themselves.  While I'd like to think that much of these performances were lost in the translation to stills and clips, it seems unlikely that watching someone literally suffering (for the sake of art-production alone) could be anything but voyeuristic and, well... icky. 

Some of the sadomasochistic rituals of the players were interesting, such as the placing of leeches on the skin, yet I still would not feel inclined to watch these rituals.  Yet the images of these pain-inducing practices had no display of pleasure; the actors looked like they were simply gritting their teeth and bearing it for the purpose of entertainment-making.  As one who feels pain constantly and unintentionally, it almost felt as though these players were making a mockery of pain, flipping the bird at unwanted hurts and getting a power surge through the self-paining. 

On a more positive note, an exhibit called "Séance: Albert von Keller and the Occult" was showing at the museum as well, and considered themes of body, sexuality, death, the paranormal, and religion little explored elsewhere, such as the eroticism of a naked woman tied upon a cross, dying.  Perhaps the distinction lies in the manner in which von Keller seemed more to be musing upon the sexually-stimulating nature of such pained imagery, rather than condoning it, whether it existed in himself or not. 

Albert von Keller. Im Mondschein (In Moonlight). 1894.

Similar to Buddhist monks who are told to meditate upon the dead bodies of beautiful young women to control lust, von Keller sat with the dead bodies of the dead at a nearby morgue and drew them as they decomposed.  As time passed, von Keller expressed a sense of peace that overcame him, realizing that the corpses were not to be feared, simply accepted as the dead that had their own beauty.

Von Keller's work, versus that of Implied Violence, will further be considered in my poetry-making this week, as I explore the theme of fleeting beauty as related to our own fleeting beauty, that is, our lives.


Works Cited

Artaud, Antonin. Theatre and Its Double. Trans. Mary Caroline Richards. New York: Grove Press Inc., 1958.

"Frye Art Museum: Implied Violence: Yes and More and Yes and Yes and Why." Frye Art Museum. 2011. 2 Jan. 2011. Web.