CAAAANE!

CAAAANE!
Animated GIF. William Shatner as Captain Kirk screaming CANE in place of KHAN.

Friday, October 30, 2015

Thursday Night Lights

Patricia V left a comment on my post about my walker:

I would love to know HOW you add the lights. Where did you get them? Are they battery powered? I want to add lights to my walker but don't know how! Thanks.

Here's a quick video I whipped up on my lights, since it felt like showing was easier and quicker than writing:


As for where I got my lights, I've gotten most of mine from either Amazon or Target. Most Targets have a section in the back year-round with Christmas lights and some of these are cute and battery-operated. Otherwise I've spent many an hour on Amazon looking up "battery string lights" and similar searches, and I have a range of things for various times of year. These are the lights I have on the lower bar year-round so I can be visible while crossing streets at nights. These are what I had on for the spring and early summer. These are what I have on now.

One recommendation I would give is to get a ziplock baggie and put the battery pack in there - I've had the wonderful experience of a set of lights getting rained on and the whole thing shorting out and melting.

I hope you found this helpful! I'd love to see photos of what you do with your walker!

Tuesday, October 6, 2015

Access Mob Pittsburgh's First AXS Map Mapathon!


Image: Two lines of texts. First line reads: "A X S MAP," followed by an icon of a person using a wheelchair. Second line reads: "Building landscapes to accommodate the world."


The purpose of the mapathon is to generate data for AXS Map, a valuable tool for people with physical limitations to determine whether or not they can patronize certain businesses. Currently there are only a limited number of restaurants, retail stores, academic and cultural institutions, and other places of business that have been rated within the City of Pittsburgh and its surrounding areas.

We will be starting at 10 AM on Saturday, October 24, in the center vaulted section of the Cathedral of Learning's main floor - look for the sign! From there groups will be assigned to different neighbourhoods to begin mapping.

Before coming, all attendees should watch the videos on the AXS Map website that instruct people on how to perform ratings.

Mappers are encouraged to dress in layers and wear comfortable shoes. If possible, teams should include at least one driver; some neighbourhood areas will be reserved for people going by bus or by foot.

When finished with their respective neighbourhoods, teams are encouraged to go out on their own to find new places to rate, and when everyone is done for the day participants are encouraged to go and spend money at one of the places they've given a high rating to, as a thanks to those businesses.

People of all ages and levels of ability are invited! However, we do require that anyone under the age of 17 be accompanied by a legal guardian.

To join the Access Mob on Facebook, click here.

To invite your friends via the Facebook event, click here.

Wednesday, September 16, 2015

Alisa and the Wonderful, Fabulous, So Good, Very Rad Day

I had the best concert experience a couple of months ago.

If it hasn’t become abundantly clear yet, I love Dave Matthews Band, and this year I had the wonderful opportunity to travel to Raleigh and stay with my best friend from grad school and her family the week DMB was playing at Walnut Creek. And this concert was nothing short of magical.

I should mention first that people in the South are just plain nice. Everyone smiles and is courteous and makes sure you’re having a great day, and as a native Manhattanite used to a general air of menacing disinterest from passers-by this is a truly amazing experience. I often feel very awkward when I have my walker and people go out of their way to hold the door for me because it reminds me of yet another way I can’t function the way I used to, but in the South they do it because it’s what they do for everyone. Because it’s a nice thing to do. Seriously. They’re that nice.

I don’t know if it’s because it’s in the South where people are nice or if some awesome person cared enough to do something, but Walnut Creek Amphitheatre has an amazing setup for people with accessibility needs. At the main entrance there was a golf cart ready to drive people down to the seating area rather than making us walk. A lovely lady passing by even stopped to help load on my walker because, as she told me, her nan uses a walker and she hopes that people offer to help her out like that. The ADA section was set perfectly at the ledge over a walkway that went a good 5’ below so that everyone could see the stage at all times without standing up. I made concert friends with the woman next to me (who also uses a walker – yay, having someone my age to talk to about walker issues!) and her husband, as well as the pleasantly amusingly drunk woman to my left. Then the concert began.

At the beginning of the second set my seatmates encouraged me to leave my muticoloured flower lights (which I had used to plow through the crowds so I could get to the bathroom in one piece) on for the rest of the show. Despite feeling rather self-conscious, I let them shine for all to see. And apparently they were visible, as toward the end of the main concert a gentleman waved from the walkway below to get my attention, then handed me a piece of paper.

It was the set list.

For those of you who don’t understand how absolutely amazing this is… They probably print two copies of the thing, and after concert fans will fight tooth and nail to get to the roadies who are cleaning up and see if they can get one of the lists. But here I was, being handed what in many fans’ eyes would be considered the Holy Grail.

I would like to say that I handled myself with utmost decorum. I would love to say that I politely thanked the man, tucked it away, and spent the rest of the show quietly enjoying myself. But then I’d not just be telling a slight mistruth, I’d be lying out my ass. After a moment of dumbfounded shock, I started screaming “HOLY SHIT! IT’S THE SET LIST! I GOT THE SET LIST!” At high volume. Repeatedly.

After a moment I motioned to the bemused man to come up so I could give him the biggest hug. After he’d regained all of the breath I’d squeezed out of him, he told me that he was Boyd Tinsley’s vocal coach, and he’d wanted me to have the set list because he’d seen me rocking out from all the way up there on the stage. I bounced around uncontrollably for a moment out of excitement because I am a tremendous fan of Boyd Tinsley (to the point of trying to always have seats on his side of the stage so I can watch him play). After the giddy bouncing subsided I asked the lovely gentleman for a favour and told him my sad, sad story of woe from last summer.

*cue magical mystical music that always implies a flashback in cheesy sitcoms*

Last summer my then-roommate and I had front-row tickets to see DMB when they came to Pittsburgh. That’s right, front row, directly behind the pit, less than 30 feet away from where Boyd always stands. It was amazing. At the end when Carter was throwing out drumsticks I started waving my cane so he’d see me and throw me a stick. Which he did, or at least he tried. He pointed at me, then tossed a drumstick which I would have caught had I not been knocked to the ground by two college-aged girls from the seats behind us in their attempt to get the sticks. While they gloated about how they’d been able to catch drumsticks two nights in a row, I was being helped up by a couple of guys who’d actually jumped over the barrier from the pit to help me out. And as if that wasn’t bad enough, I got banged up badly enough from their slamming into me that at the end of the night I had to be pushed out of the venue in a wheelchair. Since then I’d been trying unsuccessfully to get a stick thrown my way again so I could at least get a fighting chance at snagging one without worrying about breaking a bone…

I told Boyd’s coach all this, and asked if he could have Carter throw one my way. I didn’t need to catch it, I just wanted the opportunity to try. He laughed and said he couldn’t make any promises, but he would try his best.

For the rest of the concert I sat quietly and enjoyed myself bounced around in my chair and checked on my set list just to make sure it was real, smugly superior in the knowledge of what the encore was going to be, a fact no one else in the entire 20,000+ person audience knew. And at the very end of the encore, Carter did his thing, waving at fans, shaking hands, tossing out drumsticks to those who were fairly close to the stage.

Then he pointed at me, and made a motion that as a rabid football fan I easily interpreted to mean “Go long!”

And he hurled it.

Time stood still as this yellow drumstick, this golden prize, came flying at me, arcing high over the crowd. There was nobody behind me to knock me down! Everybody knew it was heading for me! MY TIME HAD FINALLY COME! Flying, flying, flying…

And it missed me and fell three feet short of my arm’s reach into the walkway below.

Have I mentioned yet how gosh darn nice people are in the South? Had this happened here, someone would have grabbed that stick and run. But not so in Raleigh! A man who’d seen the whole thing and knew that drumstick was intended for me ran over, grabbed it, and… handed it up to me.

I feel like I just wrote the script to some sappy feel-good movie, because life never has a happy ending like that, but I guess that’s the South for you. In any case, after bouncing and screaming and acting like a caffeinated two-year-old, I very carefully cradled that drumstick in my hands from Raleigh to DC to Pittsburgh. The drumstick, set list, and Warehouse ticket (Holy trinity?) are now in a picture box on my living room wall, and I could not be happier.


So thank you, Walnut Creek Amphitheatre, for being welcoming to those with disabilities. Thank you, Boyd Tinsley’s vocal coach, for making a dream come true. And thank you, The South, for being pretty darn awesome.



Photograph: A 3D picture frame with a background of printed instruments. Displayed are a set list, fan club ticket, and drumstick.
My awesome picture box frame.

Photograph: The corner of an apartment. On the left wall are a picture box frame displaying a drumstick and a beer-themed DMB poster. On the right wall are a mill-themed DMB poster and a Buddha-themed DMB poster.
My little DMB corner of my house. I'm not addicted. I swear. Shut up. I can quit any time I want.


Tuesday, August 18, 2015

They're Happy Tears



As I've mentioned before on this blog, the song Grey Street by Dave Matthews Band is incredibly important to me. I think the description I put on the video is succinct enough to explain what this video is, then. I'd try to write more, but I'm tired and a bit overwhelmed from the unabashed sob I had after recording it.

Trying to play Grey Street for the first time in over a decade.

I was diagnosed with multiple sclerosis in 2001, which left me hemiplegic for a while. After about a year I'd regained a lot of the use of and feeling in my left side, though not all by any stretch. I tried to play my guitar as a desperate form of self-inflicted physical therapy, since I'd previously been quite good, but I my hand had too little use for me to do what I wanted and I hid it away in my parents' house for over a decade.

Recently I decided to bring it home with me after visiting my folks, and tonight I decided to try playing Grey Street. It's one of the easiest songs that I could remember (though I had help of my old easy fake book), and for personal reasons is a very meaningful song for me.

What you see here... It's choppy. It's slow. It's awkward. It's hesitant. And it made me so happy I started crying about five minutes later.

Friday, August 14, 2015

Review – The Independent Brewing Company, Pittsburgh, PA

Disclaimer: When I review the accessibility of any business or venue, I do so only on the basis of my own experience with my walker and cane. I don’t know enough about the experiences of other populations with specific needs such as people who are blind or deaf to comment on how accessible a place is for them, but I welcome people who do know to leave comments about their own experiences with the same location.

Last night my friend who’s a gigantic beer geek was in my area and he dragged me out to The Independent Brewing Company, on Shady & Forbes Aves in Squirrel Hill. In proper Pittsburgh fashion I’ll describe a location by what used to be there and say that it’s in the place where Fanattics <sic> used to be. You remember Fanattics, right? Gross sticky smelly smoky dirty dive bar where they still allowed smoking and didn’t believe in mopping? Yeah, that place. I’m sure you’ll understand, given my dislike of the previous establishment, why I haven’t been in there to check out the remodel under new ownership.

Fortunately I was very pleasantly surprised by the new space. The Independent Brewing Company has a very comfortable atmosphere, lived-in but clean, loud but friendly. The space is a bit cramped, though one of the owners (who happens to be my friend’s cousin) said that they are in the process of converting the adjacent business (formerly a real estate office) into a sister business featuring all of their cocktails, allowing The Independent Brewing Company to focus on its beer and hopefully spreading the crowd out a bit. I can’t speak for the food because we’d already eaten, although the menu looked delicious, but my friend vouched for their beer selection’s being pretty awesome and I loved my Arsenal cider.

From the perspective of my own mobility impairments, I think The Independent Brewing Company did a fabulous job with their space. Outside the bar is a set of outdoor tables, most of which are at bar height with stools, but there is a low-level table there for people using wheelchairs or who otherwise cannot sit at a bar. It’s not often that I’ve seen that level of consideration given to people with mobility needs and I was very excited when the owner was telling us about it.

When I got up to use the lav, I saw a step down from the front part of the bar to the indoor dining area and, behind that, the restrooms. Disappointed, I edged around the bar while pondering how best to approach the owners about the idea of putting in a ramp. I got to the second doorframe heading down to the dining area… And there was a ramp! Oh frabjous day! I was super excited to see that the owners had put some thought into making their restrooms accessible as there are far too many businesses that claim to be accessible because people with disabilities can get in who do not have bathrooms that all of their patrons can use. I cannot speak to whether the width of the door into the bathroom was ADA compliant, but I would definitely have been able to bring my walker in and have plenty of room to turn it around and maneuver.

The two negative things I can directly say about The Independent Brewing Company are that it’s a rather cramped space so making it through the crowd to get to the ramp down to the dining area and bathrooms would be difficult for someone using a larger wheelchair, and the main bar inside is entirely at a standard bar height. I didn’t think to ask if they had a braille menu, so I would recommend that anyone needing one call ahead to ask.


Overall, I would recommend The Independent Brewing Company albeit with some small bit of caution for people with disabilities. I’ll certainly be going back there in the future!

Friday, July 24, 2015

Visual Impairments

I've been meeting a number of people recently who have visual impairments, and I've realized that while I have my blog tailored toward my own visual problems (large font, high contrast between text and background), I haven't even taken into account the possibility of someone who is fully blind coming on here and looking at my posts, which tend to include a large number of photos. I am familiar with the idea of putting captions underneath pictures describing the content, but I don't know how functional that is on Blogger.

Are there any people with visual impairments coming over here to read the random things that sprout from my brain? If so, what would be the most helpful thing for me to do to improve my blog in the interest of making it as accessible to as many people as I can?

** I'm not leaving out people with auditory impairments. I intend on adding closed captions to the videos I've put up so far. I've just been too busy with family weddings and medical stuff to finish it yet. Sorry!

Victory!

In the beginning, there was a desperate plea for help.

Friday, May 29, 2015

Google Impact Challenge

Image. Three men with bicycles. Overlay text reads "Google Impact Challenge: An open invitation to aim our collective might at creating real, impactful change."


This is exciting.

Just the fact that it was on the Google homepage today is giving me goosebumps.

I'm very, very tired tonight or I'd be immersed in all of the information they have, but for the present moment I am content to feel recognized in a positive manner, which does not happen to members of the disability community as frequently as it ought.

I encourage others with disabilities to check out the information they have!

Tuesday, May 19, 2015

In Praise of Consol



After all of the grief I’ve recently experienced with the Pittsburgh Port Authority, I cannot begin to express what a relief it is to be driven to write a positive review of something.

I really do mean driven, too – I wrote out a long post on Facebook as soon as I could last night because I was so excited by the staff training and implementation of accessibility procedures I witnessed last night at Consol Energy Center.

To set the scene, it was around 6:45 when I got off my bus and headed in toward the American Eagle entrance of Consol, bouncy and eager to see Ed Sheeran. As I closed in a staff member strolled up with a smile and an atypical lack of patronizing condescension and said to me “Miss, if you’d like to come with me, there’s an elevator entrance over here that may be easier.” As the lovely gentleman walked with me and asked about Ed Sheeran and how long I’d been a fan (instead of asking how long I’ve been disabled or keeping an uncomfortable silence, both of which I have become accustomed to), I saw two other people going up to a woman using a wheelchair and another woman using a crutch and cheerily offering them the same option.

When I got to my seat, I knew immediately that it wouldn’t work for me. It was certainly what it was advertised to be – accessible for someone with a mobility impairment. Just not the same type of physical issues as I have. It was on the end of an aisle and there were no stairs, but there was no place for my walker and, more importantly, given the layout of the arena there was no bar of any sort to help me stand up or keep me pitching forward. I have really bad vertigo at times, and looking down at the sharp slant of seats in the arena I knew I was going to have a problem.

I looked at the usher in a panic and said, “I can’t sit here. I have really bad vertigo and that’s going to make me very sick or cause me to fall. Can I just sit on my walker here in this corner behind this other seating area? I don’t care if I can’t see.” The usher… was amazing. He smiled and said, “I don’t know if that’s allowed, but also, we can find you a better option than that! Let me go contact guest relations since they’re down the hall and I don’t want to make you walk it. You just have a seat and relax.”

A few minutes later he came back with his supervisor, who was somehow even friendlier. The supervisor talked to guest relations and found that there was a seating section behind the regular arena seats that had pull-out chairs that hadn’t sold out. He brought me over and apologized profusely that the seat was further away from my original one despite my assurances that I felt this one offered a better view and less chance of being deafened.

After I’d made myself comfortable, the guest relations person popped in to make sure I was happy with my seat, asked if there was anything he could do for me, and let me know where his desk was in case I had any problems.

In writing this down it does look like the amount of attention I was paid was a bit excessive, and I will admit that it got a little bit wearing, but what has me so impressed isn’t the amount of effort, it was the staff’s attitude during this time. I have become accustomed to three things: 1. People condescendingly treating the disabled like children or, worse, sub-humans. 2. People acting annoyed that they have to go out of their way to accommodate the cripple. 3. Dripping, oozing, unctuous sympathy. My experience at Consol was a polar opposite. I truly felt like a plain old regular guest who they wanted to make sure I was happy because I’m a person, not because I’m a cripple. I have no doubt that they would go to almost the exact same amount of effort to help someone who got their seat only to find it was covered in someone else’s beer… and I really, really like that. It was so blessedly humanizing!

I don’t want to imply that Consol is the only place that has been this fantastic about assisting their disabled patrons; I fully intend on writing up more glowing reviews about places such as my favourite coffee shop, the Carnegie Libraries in Oakland and Squirrel Hill, and pretty much every Panera everywhere in the future. But Consol’s policies and procedures were outstanding, the staff courteous and knowledgeable, and overall I had an incredibly positive experience in their arena.

Monday, April 20, 2015

The Bus Incident, or Why I’m Suing Pittsburgh Port Authority


The Americans with Disabilities Act was written to protect the rights of Persons Living with Disability (PLWD) in the face of discrimination and exclusion. It is there in part so that people like me aren’t treated unfairly because of physical limitations.

On April 18, 2015, I boarded a bus driven by employee #1523. Within a block she stopped the bus and asked the lady next to me to collapse her stroller, then asked me to fold my walker. As it was a reasonable request, the mother collapsed her stroller. I was in a bit of pain and having hand tremors, so I was a bit taken aback by her request. So I refused. The driver began insisting, to which I replied that it was against the law per the Americans With Disabilities Act to require me to do something I was physically incapable of, but added that if she was willing to come back and fold it for me I would have no problem with that.

After a brief exchange in which people around me also started chiming in that I was correct in my assertion that what she was asking was against the law, the driver got on the phone with the Port Authority police to have me removed from the bus. The police told the driver (I could hear what they were saying over the very loud telephone) they wouldn’t do anything and to let me ride. Understandably annoyed, the driver started up her route again, and I perhaps rashly thanked her for not breaking the law. She gave me a bit of flack for that…

Things got heated when I asked her for her name and, upon her refusal, for her employee ID number so I could speak to the Port Authority about her conduct. From then on she started sniping at every single thing she could. When someone had to maneuver a little between my walker and the feet of the person across from me which were sprawled out across the floor, she started berating me for creating a blockage despite the fact that it was only partly my fault and that no one was complaining about having to move around me. I pointed out that people’s feet were sticking out further than my walker, and that there were a great many things that cause blockages in the aisle such as feet and backpacks. The driver said “So you’re saying I shouldn’t allow backpacks on my bus? You’re being ridiculous!” At this point I finally had the sense to take out my phone as I told her than no, that wasn’t what I was saying at all.

The final 3 minutes of my bus ride are contained in the following video:


For those who don’t feel like listening, basically it’s the driver telling me I’m being ridiculous and then calling Port Authority police *again* to try to get me kicked off the bus, a crotchety old lady whose offending feet were the source of said earlier blockage complaining that I was making everybody late, and me telling the driver as I got off the bus that I would see her in court.

After exiting the bus I immediately called Port Authority and filed a report on the driver, then called Port Authority police to press charges. Turns out ADA regulations aren’t enforceable by the police, but the awesome officer told me that I was well within my rights to sue the Port Authority both for suffering and to require them to educate their drivers on how to appropriately handle a situation when a PWLD has a physical limitation that prevents them from following bus guidelines.

I figured that in the time it would take me to write this my lawyer would call me back. Ahh well. I feel better having gotten everything off my chest, in any case.

If anyone has any advice or similar experiences you’d like to share, I’d love to hear from you. If you don’t want to post it publicly on my blog, you can always email me directly at the.wrath.of.cane@gmail.com

Saturday, March 21, 2015

Please sign my petition!

Cartoon of a medicine bottle with a marijuana leaf inside.


https://www.change.org/p/pennsylvania-state-house-pennsylvania-state-senate-pennsylvania-governor-legalize-medicinal-marijuana-in-the-commonwealth-of-pennsylvania/

An Open Letter on the Legalization of Medicinal Marijuana in the Commonwealth of Pennsylvania


An open letter to Governor Tom Wolf, Senator Jay Costa, and Representative Ed Gainey on the legalization of medicinal marijuana in the Commonwealth of Pennsylvania

Dear Sirs,

It is a sad time to live in this country when people feel the need to uproot their entire lives and move to another state in order to get the medical treatment they require. Sadder still is when it’s political discord rather than availability that is keeping people from receiving adequate medical attention.

The conversation about medical marijuana is always a tricky one, both because of the social stigma that needs to be overcome, and the fear advocates have that not only will we be denied such a beneficial medication, but that we may be deprived of some of the existing medications we currently legally take. With that in mind I tread these waters lightly, but with the firm conviction that it is the right of every person who is in pain to receive the help they need, regardless of political pressures or social sensitivities.

I was diagnosed with multiple sclerosis in 2001, three months before my 20th birthday. In the 13+ years since then, I have also been diagnosed with fibromyalgia and, following the shooting at my workplace in 2012, I suffer from post-traumatic stress disorder. Every day I take ten different medications to help with painful spasms, tremors, depression, and a host of other symptoms, plus vitamins and minerals to compensate for what these medications deprive my body of such as iron and vitamin D. I am not on medications for fatigue, sensation loss, or muscle weakness because my doctors have decided I’m on so many medications it would be dangerous to add on more. As is, my pain and tremors are not fully controlled by the medications I take, but to increase dosages of medications I already take would be dangerous and, as I previously mentioned, it’s not terribly safe to put me on more.

Photograph. Seven open weekly pill cases. Each pill case contains different pills in every slot.
A typical week’s worth of medications. Each container holds one day’s meds.

When I have access to marijuana, my pain goes away far better and faster than when I take my regular medications. When I have access to marijuana, my vertigo is tolerable. When I have access to marijuana, my tremors lessen and spasms die down. When I have access to marijuana, my anxiety disappears and my depression is easier to handle and I sleep through the night and don’t have nightmares of gunshots.

As of publication there are 23 states who allow patients to use medical cannabis to ease the pain and suffering of people with multiple sclerosis, Parkinson’s, glaucoma, muscular dystrophy, terminal cancer, and other debilitating medical conditions. Why have we not yet started treating our citizens with the same respect and access to healthcare that other states provide theirs?

Governor Wolf, Senator Costa, and Representative Gainey, I ask you, please make this a discussion about patient care, not about politics. There are thousands of people suffering every day who could be helped by access to medicinal marijuana, and with modern medical advances prolonging the lives of people with severe medical conditions, there will be more and more people in need of effective treatment every year. Legalize medicinal cannabis to help us live through our pain rather than despite it. Please. You can be the heroes of thousands of patients, but nothing can happen until the laws are changed, and it’s in your power to start that change.

Thank you for your consideration,
Alisa Grishman
Pittsburgh, PA

A List Of Things It’s OK To Ask A Person With A Disability That Was Rejected By McSweeney's So I'm Posting It Here


  • Would you like a hand with that?
  • What’s your name?
  • Do you know what time it is?
  • How do I get to the nearest gas station?
  • Can I buy you a drink?
  • Would you like that for here or to go?
  • Do you believe that aliens built the pyramids?
  • Who really shot JFK?
  • Can you solve the Twin Prime Conjecture?
  • Who let the dogs out? Who? Who? Who?
  • What would you do for a Klondike bar?
  • Does my butt look good in these jeans?
  • Oh my god, where did you get those shoes?!

Wednesday, March 4, 2015

Relapse

Welp. I just got out of the hospital... Thank you, multiple sclerosis, for being horrible. Lots of writings and whatnot I want to make about what a truly dehumanizing experience being hospitalized is, but right now I am quite seriously in withdrawal from steroids (sweating, shaking, gross) and weak from the relapse, so al I'm up for right now is lying in bed shaking. But I'm still alive. That's what matters, right?

Thursday, February 26, 2015

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.