Watch your step!

Yeah, I can be kind of a jerk when I’m fed up.

Sometimes on Sundays, I enjoy going to estate sales. It’s really the hunt for cool antiques and old technology that I go for. I use an old rotary phone for business and do my writing on an old solid metal tanker desk. This past Sunday, I shlepped my wife and daughter out to a local estate sale.  Fun. At least it was until I entered the home and a man who worked for the estate sale company had to chime in.  Here were the magic words: “Watch your step.” Now, to others, this may seem like a kindness. I, however, see it as patronizing. Why?  Because I was standing with my crutches about to go down one half step. Yes, a four-inch step.

For those who don’t know, I usually use a wheelchair to get around. For short distances, I can use my walker, but it is cumbersome and doesn’t allow me into small spaces. In those cases, such as an estate sale, I will use my crutches to take a few steps and have my wheelchair nearby at the ready for when I need to sit. I was having a good time and then this guy had to open his mouth. Here’s how it went.

Him: Watch your step.

Me: I always do.

Him: Just want to make sure you stay safe.

Me: Okay. Use your turn signals when you drive home.

Him: Sorry?

Me: Just want to make sure you stay safe. You see, sir, I am a grown man. I know so because my mommy tells me so. Therefore, I don’t need to be told by you to watch my step.

At this point, my ten-year-old daughter puts her earbuds in and tries desperately to lose herself in her music and pretend that this isn’t happening. My wife makes a quick b-line for another room. I watch as he holds his mouth agape and I carry on.

Did I overreact? Perhaps. But I am sick and tired of able bodied people thinking they can talk to the disabled like we are children.

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Painkillers.

Drugged!

I am the anti-addict.

Recently, my pain specialist quadrupled my narcotic dose.  But I haven’t increased what I actually take.  I spend a good part of my day in pain, yet there is something inside me that prevents me from taking four 20 mg of Percocet a day.

I call it the fear of dropping dead.

Before that, he had prescribed Morphine tablets.  I hallucinated and then flushed them.

Then he prescribed Oxycontin.  I was in such a haze that I said buh-bye to them.  Down the toilet.

If you are looking for a good high, I suggest that you pull up a chair to my sewer system.  There’s some great crap that’s floating downstream.

As for me, being drugged up and pain-free is not living.  At least not for me.  The constant terror-inducing panic that I get every time I take a pill, wondering if I’m going to die, is not worth it to me.  There is so much horrible addiction and overdosing occurring every day in America due to Opioid overuse, that I feel I need to keep my eyes wide open and err on the side of caution.

I highly recommend the excellent HBO documentary “Warning: This Drug May Kill You.” Fun fact: of the nine narcotics listed in the trailer, I have taken eight.  The only one I haven’t been on?  Heroin.

And it’s going to stay that way.

Warning: This Drug May Kill You

 

“Man, You’re Lucky.”

I decided to take a few minutes and get out of the house.  I have been feeling ill for the past few days due to reoccurring anemia which flares up a few times a year due to either my medical condition or the amount of blood transfusions I have received over my lifetime.

I feel like a schmuck when I ride my scooter.  The people on the various scooter commercial make me want to barf.  “I’m not like them,” I tell myself.  But then, to get out and feel like a human and breathe fresh air, I need to hop into one of those beauties to get around my neighborhood.

So I am riding down the street, enjoying my first time out of the house in four days, when a man in scrubs (!) walks by me and says, wait for it… “Man, you’re lucky!”

Now, this wasn’t a “Hey, great job managing your pain.  You are indeed blessed to have what you have and don’t forget, there are disabled people in Darfur who don’t have any way to get around, so indeed, you are quite lucky.”

No.  This was an “I have to walk home, but you get to ride around in your little scooter.  Man, you’re lucky.”

It wasn’t until I was half a block away that I realized what he just said.  Me being me, I swung around to confront him but he was already gone.

So I decided to resurrect this blog to tell him the following:

“No, assface, you’re the lucky one.

You’re lucky you don’t have to deal with chronic pain 24/7.

You’re lucky you can walk.

You’re lucky you can go and do anything you want whenever you want.

You’re lucky you can work.

You’re lucky you don’t have to be a slave to painkillers just to get you comfortable enough at night so you can sleep one or two pain-free hours.

You’re lucky you don’t have to rely on others to help you at every turn.

And finally, you’re lucky you don’t have toxic dick neighbors like I have.”

Go fuck yourself.

lucky

99 Cent Only Store in North Hollywood

IMG_3084

Trust me, I don’t advertise that I shop here, but they have a special frozen bread I eat that is 6.99 elsewhere.  This is how many of the aisles looked.  Not only was it inaccessible, but it was a definite fire hazzard.

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Coming soon… Exposing Inaccessibility in Los Angeles

I am sick and tired of not being able to enter a store because of a single step or a blocked entrance.  I will be photographing and posting such businesses and I urge you all to do the same.  Please feel free to send me your pix!

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Jackass of the Week

Kanye West Stops Concert to Yell At Wheelchair-Bound Kid, ‘Stand Up!’

At a concert on Friday in Sydney, Australia, the acclaimed rapper called out a pair of fans for not standing up at the show. One had a prosthetic limb, and the other was in a wheelchair.

Click headline to be taken to the article.  VIDEO in the article.

Let me just say this.  No one is “wheelchair-bound.”  It’s a stupid, obnoxious and insulting term.  A wheelchair is freedom for those of us who cannot walk.  It’s not a bad thing.  If I was in bed and the wheelchair was across the room, then I would be bed-bound.  Let’s stop this term from infecting the media.

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Good Times.

As a wheelchair user, I frequently for get that I am now a head or two shorter than those around me.  When I stand, I am 6′ – in the chair, not so much.  I was at Target yesterday with my 13 year old son, shopping for socks and such.  He walked away from me and I noticed that the undies I needed were on the top shelf (I’m a big guy – the put the fatty stuff up high, I guess they want us to get more exercise?  My son walked over to the side of my chair and I leaned over and whispered “I wear size 2X undies,” hoping for some help from him.  I looked over and guess what?  it’s wasn’t my son but an elderly Asian man who looked at me in horror.

Oops.

“When I Walk” – a MUST SEE

I was blown away,  This is THE documentary to watch now.  Join Jason DaSilva on his incredible journey through life with MS.

From the website:

DIRECTOR’S STATEMENT

I love New York. When I was younger, the city was my playground. You could find me on any given weekend catching brunch with a friend at a café, going to an East Village restaurant for dinner, and then hopping the subway, headed to a nightclub in Chelsea. But at age 25, nine years ago, I was told I had multiple sclerosis, and I saw my freedoms slowly vanish. All of a sudden, I found myself using a walker—now, a motorized chair—and planning daily activities with precise schedules and strategies for getting from one place to another, trying to maintain some semblance of the spontaneous city life I loved to live.

I wanted to capture this transformative experience—becoming disabled—in WHEN I WALK because I hadn’t seen it done before, and people need to see how a degenerative disease impacts the lives of those living with it. The first scene in the film is of me on the beach with my family. I brought my camera along to film the get-together, but the footage we captured meant more than I could have imagined: I fell down, and couldn’t get back up. It was the very first time my MS made something in my life go completely awry, made itself visible and impossible to ignore. What was supposed to be a nice family vacation turned into the inciting incident. Soon after, and encouraged by my family, I chose to not ignore my MS but to turn my camera on it instead. I had made films all my life, so making a film about the progression of the disease seemed a natural way for me to process the journey.

Watch the trailer HERE

Visit the Film site HERE

You can also screen the film on POV’s website HERE

I’m Back.

It has been awhile.  For that I am sorry.  I recently finished a creative program where I live and and now back.

Yup, it’s an ulcer.

Had my endoscopy this morning. It is an acute ulcer due to NSAID consumption.

Poop.  I loved my Advil.  Now it’s a no go.

They tried to get an IV started in both my hands, but failed due to the countless IVs I have already had over my lifetime.  The anesthesiologist tried ramming one in and I was howling in pain.  They finally had to wheel me in and give me the gas.

hold-still-while-i-gas-you

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