Is Disability Taking Over?

It is -4° out right now and for the second day in a row (and third time this week) I am staying in.

Staying alone in one’s house can either be a relief or be very isolating. At the moment, because I’m feeling stranded more than voluntarily staying in, it’s isolating, and as I realized that there was no way I was going to be able to go to the pool or board game night or see people, I started cursing being disabled. Vehemently.

And then I stopped and wondered… Was this sad, lonely, isolated feeling actually related to my being disabled? I’m used to having great difficulty doing the things I really want to do because of physical limitations. Getting out of the house is harder. I have a lot of trouble dealing with temperature extremes (common in people with MS). I can’t put my hands in my pockets while walking because I need to hold on to my walker. I have no way of holding an umbrella in the rain. Lots of little things that add up to one great feeling of suckitude.

But the feeling of isolation from not going out? I’m blaming it on being disabled, but isn’t it from being human?

 I think the point of this introspection is not so much to ascertain whether it’s disability or humanity that’s the root cause of my feeling trapped, so much as it is to ponder the fact that being disabled as a cause of my misery came straight to mind, and I had to remind myself that it’s not just people with disabilities who are trapped in by the weather and feeling isolated because of it.

The matter here is two-fold. There is the fact that I hold on to these societal stigmas about disability being a horrible thing, as I tend to blame bad things on MS and attribute good things to my own general awesomeness. That’s a matter for a separate post that’s already gestating in the recesses of my consciousness. What I want to write about is the fact that I personally feel that my identity as Disabled Person is taking over my identity of Alisa. Who Happens To Have A Disability Among Other Noteworthy Attributes.

Artists are often accused of having a certain level of insanity due to their fervent dedication to their masterpieces, eschewing normal standards of socialization, but this accusation is tempered with a sense of awe when their paintings, symphonies, sculptures, sweaters, etc. are unveiled for all to see. Yes, there was obsession, but the obsession lead to something perceptible to most.

I feel like at times I have a similar level of insanity from having to cancel out on social engagements because it’s too hot or too cold or my bones hurt or I have an MRI or a doctor’s appointment. My life swirls around issues of my physical limitations like a painter’s swirls around the need for inspiration, only in the end I have nothing to show for it.

It bothers me, that my identification with one single part of my self has become so overwhelming. I am a great many things that could take over as the id to my ego. I am a knitter, a chorister, a grandchild of Holocaust survivors, a Buddhist, a Jew, a vegetarian… I guess maybe because those are all choices I’ve made, or interests I have, rather than the manifestations of a neural buffet set out for my errant T cells.

I think my discomfort with my physical limitations and my constant feelings of being unfamiliar with the movements and sensations in my body may be a major source of my feelings of being dominated by disability, but it’s so, so, so, so hard to (as my therapist would say) take a moment to settle into my experience of my self, because my self is so very different from how I feel like it should be.

That was badly phrased. When I say that my self is different from how I feel like it should be, I’m not talking about life aspirations. This isn’t “I’m sad because I’m a junior manager in a paper warehouse and it’s hard to settle into that experience because I really feel I should be a Supermodel and Grammy-winning solo artist.” I’m not even sure how to really explain this. It’s like…

I have thoughts, and those thoughts include “Left arm, lift up six inches.” When I do that with my right arm, my right arm obediently lifts up six inches with minimal effort and stays there until my brain says “OK, arm, relax.” But when I tell my left arm to pick up six inches, it clumsily lifts up like it’s heaving out of a pool and swings around and tremors. Trying to just be in my body for a moment feels like trying to reach Enlightenment while extremely intoxicated; not happening.

Wow, I’ve gone incredibly off-topic from my original premise. I think I’ll end this and post it before I sink into maudlin self-pity. I really would love feedback on what I’ve written, even if it is just to say “Hi. I read this.” It’s nice to know someone’s listening.

Stickers

So long as I'm pic spamming my blog... Recently I had to take my laptop into the shop for repairs because my graphics card was dying and giving me multiple kernel panics a day, and as part of Apple's going over my machine looking for faulty components they wound up replacing my be-stickered but slightly cracked and burned-out screen. I decided this time to have a theme to what I put on, so without further ado, my new laptop screen:

I live on the corner of Grey Street...

A fan letter I wrote to Dave Matthews before the band’s three-night run at the Greek Theatre in Berkeley, CA, this past summer:

Dave-

Don’t know if you ever read these, but I have a question.

Why don’t you play the third verse of Grey Street anymore?

I don’t know if you realize how incredibly important that part is to some people. I suffer from multiple sclerosis, fibromyalgia, and post-traumatic stress disorder following a shooting at my workplace. The third verse of Grey Street followed by the final chorus is the best metaphor for the pain of chronic illness and chronic depression I’ve ever heard in my life, and playing it for other people has actually made it easier for me to talk about my frustrations with people.

When you have a chronic illness like multiple sclerosis (which I was diagnosed with thirteen years ago on Sunday at the age of nineteen), people try to be helpful and with the best intentions tell you to take comfort in the small things in life, the things that are positive, the things that don’t suck as much as everything else - in essence, it’s like someone is standing outside my door telling me to take what I can from my [shattered, ruined] dreams and make it as real as anything so that it can take all the strength out of the courage. (It has to be strength. Not work. When you have a chronic illness, people LOVE to tell you how “strong” you are. Which hurts. A lot.)

And my response to that is wanting to tell them that they’re crazy, that what they’re saying is horrible and wrong and doesn’t take into account all of the other suffering and hard experiences I have.

I have the final part of that - “I live on the corner of Grey Street and the end of the world” - tattooed on my arm as a way to communicate with people about my experiences; in essence, it’s a grounding point, a place to find me, so I can get help from all of the suffering I’m so used to. The words are surrounded by flowers and shading in colours bold and bright, but around the words themselves the leaves and swirls mix to grey, because that is EXACTLY what it feels like. I could change everything about me and my life using colours bold and bright - that is, to say, by taking what I can from my dreams and making them as real as anything - but any time I try all of those colours, those dreams, those feelings, just mix to grey.

So please. I think people need to really hear and understand the true meaning those words, rather than just hearing it as a mention of a creepy stalker outside a woman’s door.

And thank you for writing those words. You cannot begin to understand how they’ve allowed me a way to communicate all of my pain and frustration with people in a way that can be beautiful and thought-provoking instead of off-putting and dreary.

I’m going to be at all three nights of your Berkeley show (came all the way from Pennsylvania!), so if you get this before then, please consider doing that for someone whose life was in many ways saved by your words.

Thank you.

SAY CHALLO TO MY LEETEL FRIEND!

My MS Tattoo

In 1906 Santiago Ramón y Cajal, the father of modern neuroscience, was co-awarded the Nobel Prize in medicine “in recognition of [his] work on the structure of the nervous system,” mapping of many hundreds of neurons, and discovery of new types of neural structures.

Seeing as I have multiple sclerosis, a disorder in which my neurons are attacked by my blood cells, it seemed obvious that I should somehow incorporate neurons into my MS tattoo. Enter my very talented artist Aaron, formerly of Bodyworks Tattoo Studio, who helped me design something truly beautiful.

In Tibetan Buddhism, the lotus is considered to be a symbol of purity and healing. In my tattoo, the root system of the lotus is an original drawing by Ramón y Cajal of a pyramidal neuron similar to the ones in the human motor cortex, where I have a lot of demyelination. The symbolism there is that the lotus is bringing healing purity to my neurons, and in turn my damaged neurons are feeding my path toward purity and enlightenment.

The butterfly is there in place of the MS ribbon, because I was genuinely worried about people giving me drippy sympathy if they saw a ribbon and asked about it. The [new] MS ribbon is orange and I’ve seen a lot of people use butterflies in place of the ribbon on tattoos and t-shirts and the like.

The line on top is from "Crush" by Dave Matthews Band. I have a life-long love affair with Dave Matthews Band - I remember waiting in line for hours outside of Scotty’s Records back in 1996 for the release of their second album. Naturally it was his words that I wanted to have on my arm, and nothing seemed more apt than “By love we’ll beat back the pain we’ve found.”

So there you have it! My MS tattoo, which has since grown to be part of a full sleeve devoted to chronic illness and chronic depression.

I love my tats.

Fresh ink.

Healed ink. I stand by the conviction that freckles make tattoos cooler by adding texture. The bougainvillea below are similar to a photograph in my therapist's office that I often stare at when I need something to focus on while regaining control of my breathing.

Original drawing by Santiago Ramón y Cajal.

MS Problems

I made a Tumblr a while back based on the ever-popular First World Problems, only mine was a tad more specific. I haven't had much inspiration since my initial outpouring, but I'm hoping that people reading this might maybe have ideas based on their own experiences that would make for good memage. Failing that, I hope I manage to give someone who's feeling down about the MonSter a good laugh. Everybody needs that now and again...

Ladies, gentlemen, and those who do not adhere to a binary definition of gender, I present... MS Problems.

Trudge Cam #1

Text taken from YouTube: Video taken for my blog which can be found here: http://thewrathofcane.blogspot.com/

Pittsburgh's public spaces are not kept in repair. The mayor recently addressed the accessibility of the Downtown areas for both bicycles and for people with disabilities, which I think is fantastic, but there are problems that people who use assistive devices face that are not so obvious.

This is taken of a typical walk from very close to my house up to the bus stop so I could get to a medical appointment. There is some swearing at the end after I first get cut off by some jagoff in an SUV and then in the adrenaline-fueled shock that came from nearly flipping over on a sidewalk edge.

Video is vertical because there wasn't a good way to attach my phone to my walker the other way around. I sound nasal because it was less than 20° out.

Taking City Council on a Field Trip

Is there a precedent for providing members of the local City Council with wheelchairs, walkers, and canes and taking them on a jaunt around the city with the intent of demonstrating how great a need there is to improve accessibility of roads, sidewalks, and places of business? If not, I intend to do it myself.

I cannot begin to describe how frustrating it is to get stuck with my walker every few yards because of a pothole or crack in the sidewalk (or worse, close to flipping over), and I’ve found myself contemplating a few times recently how someone using a wheelchair would be able to leave their house at all in the winter. Just a few days ago I had to walk in the street to avoid a long stretch of sidewalk that hadn’t been shoveled and had melted and frozen over again because the City of Pittsburgh does not enforce laws requiring sidewalks to be cleared. I wound up slipping on a patch of ice while trying to maneuver onto the road and rolling my foot badly enough that I bruised a bone in the heel of my foot; three days later and I’m finally out of bed but still very tender.

We as a society are not very good at putting ourselves in the places of others. We’re so addicted to the idea of always being ecstatically happy that the mere possibility of a negative thought sends us into a blind panic. Everyone has seen the Lego Movie, right? We are all Princess Unikitty.

When wealthy people can’t empathize with people living in dire poverty? They’re being Unikitties. They are subconsciously afraid of having Not Happy thoughts so they blindly throw some money at the problem and then cling to their riches for protection. Same goes for white heterosexual male politicians avoiding thinking about the increasing rates of pregnancy among poor black teenaged lesbians and the societal pressures that are creating this problem. And I feel that in many, many ways people avoid considering what it must be like to be disabled because to them having a disability must be Not Happy. So they drive the thought away, failing to empathize and instead throwing out some pity so they can go back into their happy little Cloud Cuckoo Land.

While I’ve never actually watched any of them (nor do I own a television to begin with), I guess that’s why shows like “Secret Millionaire” are so proliferate. We get to vicariously find out what it’s like to stop being Unikitties without risking any sort of pain ourselves. There is a lot I can say about this as a Buddhist but that’s another discussion for another venue. My point here is that often the best and perhaps only way to create change is to force people to face what it is that they don’t want to look at.

With that in mind, I want to find a way to get members of the Pittsburgh City Council to take a trip around parts of the city with me. I’ve already talked to my friend Holly (who is a professional photographer with a disability – her work can found here and here) about a photography project I want to post on here in which we document all of the failings of the City to maintain its supposedly accessible areas, but seeing pictures isn’t enough to change how people think. If it were we wouldn’t have genocides, war, starvation… OK, maybe I’m going a little bit overboard here, but I think I make my point. To get people to see things you have to provide them with a kinesthetic experience. Hence my experimental outing.

The hardest part of this is logistics. Getting a dozen or so basic walkers and non-motorized wheelchairs is the easiest part, I’m thinking, since I’m sure any number of service agencies would be willing to loan out one for this experiment. The “fun” part will be convincing members of the City Council – hell, maybe even Mayor Peduto himself! – to participate, and hopefully getting local media outlets to cover the results.

I’m also concerned about the fact that I am only covering motor disabilities. I am sure that people who have visual impairments also have a lot of trouble with the snow/sidewalk conditions that exist at the moment, but I don’t know anyone with a visual impairment who could tell me what I should add in as a component. All I know is that I would be doing a great disservice to the blind community by just throwing blindfolds on people.  Should this rather insane idea of mine ever come to fruition, I will be sure to contact the local vision centers and get their input.

So yes, that’s what’s simmering on my mind right now. Overall this will have to wait until spring to focus specifically on the state of sidewalk maintenance and building accessibility; lack of enforcement of snow removal is a concern, but I’d rather treat it as a separate issue so as to not lose any fine points.

If anyone knows of any similar projects or would be interested in helping out, please leave me a comment or contact me at the.wrath.of.cane@gmail.com.

Repost: Inspiration Porn

This. This this this this this. Cannot begin to describe how much this.

I started writing a similar piece not too long ago that I still intend to finish and put up here, but the ladies and gents over at Disability in Kid Lit are absolutely brilliant and make some fantastic points that I think everybody needs to read. Even if you don't think you need to read it... In fact, especially if you don't think you need to read it, you do.

In addition, here is an absolutely amazing TED Talk that my friend Amaris sent me a while ago that very succinctly sums up a lot of my feelings on having a visible disability and being treated as an inspiration instead of a regular person.