I Can't Believe He Came Here Like That

Today I had the pleasure of making an unplanned trip to Wegmans. Have I ever said how much I like grocery shopping? Well Wegmans is at the top of my list. If you know me and know my eating habits of the last 6+ months, you wouldn't have been surprised to see me buying 6 Green Giant veggie boxes. People always ask me if I need help when I'm reaching for frozen food, being that most of the time the angles that they are placed into the cases make me have to shift around a lot in order to reach them. I only stand up as a last resort, sometimes passing on something that is too high up, as I'd have to place my basket on the floor in order to do so, and picking it back up if it happens to be full is way more of a challenge then reaching the food while sitting down.

I noticed voices to the left of me, a family discussing which veggies to buy, but as I was both heavily concentrating on wiggling free a box of broccoli with cheese sauce and totaling up the cost of my basket, I didn't pay them any mind. Besides, I didn't get the vibe that there were little children staring at me and they seemed too involved in veggie picking to bother to ask me if I needed help (a relief).

Like any good driver though, when I had my 6 boxes and backed away from the case I turned my head left to make sure I wouldn't run into them. Standing there with his parents was a boy around 14 using a reverse walker. I didn't look at him long enough to notice what his clothes looked like, if he was wearing AFOs, or if the hand grips of his walker were red (they most likely are). I only noticed out of the corner of my eye that he most definitely has CP. I was too focused on repeating "$18.71, $18.71" in my head to think I cared.

[image description: the walker with the red handles, although mine didn't have those hip positioning pads]

Except I did care. The first thought that came into my head was I can't believe he came here like that. The next was, no wonder they understood that I didn't need help... Then I wondered why I thought such a seemingly negative thing about the boy. It was totally a transference thing. Did his parents force him to go grocery shopping against his will? Was he insecure and embarrassed, is he sick to death of preschoolers staring?

I would never have gone out in public using a walker without putting up a fight. People might think I'm r------d. People I'll never see again... But that used to matter to me. I wasn't that kind of cripple, and I didn't want anyone thinking I was.

Then on my way home more thoughts came into my head: Did his parents force him there? Did they force the exercise on him? Doctors have "prescribed" grocery shopping to me in my life. Does he not like his chair? Has he used a walker since he was a toddler so that after over a decade he's OK with it? I have used one only here and there. Did he like not walk until he was 10; has he bought into the "people who walk are better, I'll use my chair over my dead body" rhetoric? Been there done that.

Then I felt sorry for him. Wegmans is the biggest grocery store I've ever been to. As I have trouble finding things and often have to walk back and forth around the store or up and down the same aisle three times in order to find things, I have gone there on foot and left not being able to stand for the rest of the day. Does he not have a powerchair? Is he mortified at the thought of his parents pushing him in public? I most certainly was at that age. He doesn't have to go home and collapse tonight. I didn't.

See what I mean, transference? I was having flashbacks to 1999. All I can hope was that they were flashing forward, noticing that I was alone, doing my shopping independently, and wondering how I got there. Did I drive, take paratransit? I actually had rolled the mile and a quarter from the last place I was, and then took the train to the bus and rolled the last 2 blocks home.

Do his parents have more hope for his future now then they did before we bumped into each other? Do they see less dependence for their son and more independence? Do they wonder if I live alone? The only exchange we had was the mom offering to close the freezer door for me as I was backing away "Oh, I've got it," I said for the 9001th time. That was before I saw her son. Neither of us said anything after. Was the kid looking at me in horror, swearing to himself that he'd never be caught dead grocery shopping in a chair? Flashback, 1999: I would have said that exact thing to myself.

I've certainly grown in the last half of my life, as I obviously don't think that now, and for that I am thankful. But it makes me wonder why all these thoughts came into my head so quickly. Why my memories of these things are so vivid, while memories most people treasure, like summer camp are harder to bring to the surface. Is this a shared experience among people who were born with their disability? Because I thought only people who had serious trauma have flashbacks...

Acceptance

My stepfather is turning 60 and my brother is turning 30 five days apart. My stepfather didn't have any children until he was 54 (us) so you should see him doing family stuff. All he wants for his 60th birthday is to go to Las Vegas with his family, me, my brother, his wife, my mom, and my grandma. It's kinda sad he doesn't want his family to come too, but that's another story.

After the debacle where we went to Hawaii in 2010 and all we took was my dilapidated Quickie, every time this idea has been mentioned, all I can say is "my chair, my chair, my chair..." Having traveled twice independently with a powerchair (all the other times were with a manual), most recently 5 weeks ago, I know the drill and can do this confidently.

I'm happy to report that my parents are ok with this; that they've thought through some of the logistics and recognize the importance of my independence. They understand the utter frustration I felt in Hawaii, and care that I can enjoy myself as much as possible.

My mobility has declined over the past 4 years, and I feel like my ability to walk was somewhat subconsciously tied to my independence. At least it was in my head... I'm concerned that my mother is upset with me on some level. She put a lot of time, energy, and money into something I'm letting slip away. Am I leading the life she wanted for me? I think so, but it's different then either of us could have imagined.

We sat at dinner and my parents (who have been to Las Vegas, I haven't) told me of all the places I would need my chair. It sounds like I'll be sitting all day. I can't just use it to get somewhere and then dump it in the corner -- it was $13,000 afterall. And they're ok with that, which leaves me kind of shocked. Oddly I am not ok with it. I am thinking of the physical pain this causes, the exacerbation of my spasticity. But I'll figure something out. My brother doesn't take his ritilan when he goes on vacations, and he's always had fun with this stuff. He can drive my chair.

Over the years my chair has become a part of me, an extension of my independence, and after all I did to actively fight it, I guess I'm still surprisingly having to revaluate my identity to include it. Why else would I think this was so odd?

I'm a wheelchair user, and that's ok.

A Positive Observation

[Image description: The chicken boxty I had for dinner. Boxty is a very delicious Irish dish.]

My parents stopped to take me to dinner the other day on their way home from visiting my grandma, as I'm not at all out of the way. We decided to go someplace new to them, someplace I hadn't been in about 4 or 5 years. Right as we pulled into one of the accessible spots a minivan pulled into the other one. I watched as an older lady and a PA got a manual wheelchair out of the trunk. For those of you who don't know, I check out chairs like some people check out cars. It was a very crappy chair, which was obviously custom (a shame... If you're going to go through insurance approval and all...) as the frame was blue, and it was an Invacare. I didn't notice if it was a foldable chair or a rigid frame as I was concentrating on getting out of the car, but as it had swing away foot rests and a sling back I imagine it was foldable. I didn't get a chance to see the wheelchair user.

We went into the restaurant and got seated, and they came in right after and got seated diagonal from us. I checked out the woman in the chair, who must have been in her 40s. "Why isn't she in a powerchair," I thought? I'm not sure if she has CP or if she had a TBI or a stroke when she was too old to have it classified as CP, (when babies have strokes they call it CP) but I imagine she has CP, and regardless would be perfectly capable of handling a joystick.

As soon as the three of them got settled, the woman turned to the person who seated them, and asked him what his name is. "My name is Wendy, she said in perfectly understandable "CP speech," if you know what I mean. "I'm very happy you're here." To which he replied, "I'm very happy you're here."

She repeated this exchange as soon as the waitress showed up, even before she had a chance to say anything, and again when another restaurant staff showed up.

Hmmm... I thought. What a clever idea. I also noticed out of the corner of my eye that her PA had put on a bib. I'm sure being in your 40s and wearing a bib, coupled with the fact that you're being pushed by a PA wearing scrubs (ICK! if I had a PA I'd make them wear jeans to go out to eat) often if not always puts her in a situation where she's ignored. Where people look at the people she's with as if she's not even there and ask them what she would like to eat. Although my CP is significant enough that there's no way I'd ever pass, I seldom find myself in this situation, and found it to be a great way to break down a frustrating communication barrier... which leaves me wondering if any of you use this strategy or a similar one? Just curious...

A Conversation with My Family Part 2

Same morning as the last post. Same brunch. Somehow we're in a conversation that turns briefly to London, and then briefly to a specific museum in London, where my stepfather mentions he bought a book for $20 that is now extremely rare and is worth $300. My parents are like that, they have all kinds of "shit" in their house that isn't shit at all. You might look at that book at a yard sale and give me $2 for it. I don't even know which one it is, but I'll know to look for it. It's the same with their dishes, they're into Fiestaware. They might have a $300 plate lying around.

So I look at them both and say

"When you're old and demented we'll bring in an appraiser so we can sell your dishes and things and pay for your home attendants. Because of course we have to pay them a living wage..."

This sets me off on a tangent about someone I know who gets paid crap under the table, to which my mom responded about a close friend who paid her mom's/ mom-in-law's attendants very well. But then she went

"Start with the sterling sliver it's worth [tens of thousands $] retail, so you'll probably get [I forget what she said]"

Is this the kind of conversations other 26 year old daughters have with their 54 year old mothers, or is it just me? It's what happens when you get involved with worker rights I guess...

A Conversation with My Family Part 1

Yesterday was my mother's 54th birthday. I took the bus home Saturday night after work, and a few hours earlier my brother flew in overnight from New Mexico, where he's living in a hotel for a few months. Sunday morning we went to brunch. My parents have never owned a mini van, because my mom is scared of them, but because my stepfather was in a car accident and my mom's best friend is in California for the entire month of February, we're borrowing her's. At some point during the morning, my mom looks at my brother and says

"Jason, help Cheryl with the door."

To which I snap

"I don't need help with the door. Don't you know etiquette? You don't help someone unless they say 'I need help with the door'."

She could have said "Do you need help with the door?" That's different.

On the way home we stopped at a Japanese grocery store. We're parked right in front of the door. Why go to the ramp built onto the access aisle a few spaces away? Except I can't do curbs, which they all know full well, and everyone just got out of the car and walked into the store without any regard to me. One of them had the store door open before I even had the car door closed. The parking spaces had those stupid barriers that keep the front of your car from being close to or on top of the curb, so they were too far away to lean on, which I'm sure at least one of them noticed.

"HEY!" I said, a slight bit exasperated. I should learn to keep my mouth shut...

6 Questions on Passion

I've wished in the last year that I'd taken some time to be reflective / introspective about my life and after spotting this meme on Jay's blog I decided to take the opportunity.

What puts a smile on your face?

Following what makes you truly happy is a wonderful way to figuring out what you were put on Earth for. Think about something that you do or that perhaps you used to do that brings you total happiness!

Furry creatures like dogs, cats and horses, NOT mice or squrils or things like that. 18 months ago I was visiting my brother all the way in California and one of his cats curled up on the right side pillow and another curled up behind my bent knees. I tend to toss back and forth and sleep diagional so it was hard to get a deep sleep while trying not to disturb them, but they put me completely at peace. It's also hard to be at a barn with all the dogs and ponies without being as mobile (and short) as I was when I was a tween. It's hard for me to bend over to pet dogs, and it bothers me that over the years I made a consious decision to make my balance worse. I've been longing to bury my head in my ponies neck, but I've been too afraid s/he'll move and I'll fall over. I wish I didn't always feel like I have to keep my distance these days.

What do you find easy?

What we find easy for us to do, will be related to what we are passionate about. It’s very hard to hate something that is very easy for us!

Information and referal. I always pay attention when people mention resources and love, love, LOVE when I can hook someone up with agencies/services that solve their problems and improve their lives.

What sparks your creativity?

Think about something in your life where you seem to always expand its horizon, always coming up with new, fun, and exciting ideas relating to that subject. Whatever makes you creative is something that you are passionate about.

I haven't been super creative in years, since the last time I had an extended hypomanic episode :( It's sad because creativity is one of the things I value the most.

What do you like to talk about?

Most of the time, we aren’t aware of this. A good way to figure this out properly, is to ask your friends. Ask them what they believe you like to talk about the most, what topic makes your eyes brighten up, and changes your entire behaviour.

I like to complain about the injustuces in my world. The lack of housing vouchers, people like nursing facility social workers who purposely hide community resources, lack of knoweldge of affordable health care, for example. When I'm at On Our Own I frequently talk about depression, whether it's the things I'm not doing like dishes, or the things I am doing, like horseback riding and personal trainer appointments, or the rush I get from activism.

What makes you unafraid of failure?

When you do what you are passionate about, you have total confidence in your abilities. This makes you not worry about failing, because in your mind, how can you fail when you do what you love?

I'm always affraid of failing because I've failed so much in my life that I mostly expect to fail. Sometimes though I purposely go into something with very low expectations, like bowling, or horseback riding. I can't fail when I have realistic expectations.

What would you regret not having tried?

If you were at the end of your life, what would you regret not having pursued? What would you have liked to do, that you didn’t get a chance to?

I deeply regret not going back to school and not having been able to finish my degree when I was so close to being done. I wish I wasn't taking an extended break.

On Rolling In the Street: the Saga

Yet another horsey post. You're just going to have to put up with them, I can't help it! Lately I've been thinking about horses more then I think about botox, which is really hard to do, because when I think about Bentley I think about botox and how we can change it up so I can "get back in the saddle" again (I've been riding bareback) without feeling the need to cry. I wish I'd actually paid attention to "you have to stretch your adductors or you won't be able to ride a horse." They actually weren't kidding! But enough with the tangents...

Therapy Doc wrote a post yesterday that was very loosely about horses (and posted pictures like the one to the right that made me go OOOOO PONIES! and squeal a bit in my head, like I used to do out loud when I was 5) and a bit less loosely about riding her bike on the shoulder of a busy road.

Riding in the street and ponies: 2 things that are very closely related in my life. If I have the choice, of course I roll places on the sidewalk, but sometimes you are just completely stuck. Some scenarios: Say you get to the end of a block and a curb cut is either completely missing or being torn up by a construction crew. The one on the other side is fine. What do you do? Go home or roll back half a block to a driveway and then dash as fast as you can?

Snow is the worst because people tend to shovel snow into curb cuts and the amount of snaking back and forth between street and sidewalk is maddening. My mom lives in what could by some be considered a remote area, but really it touches one of the biggest cities in the state. So it's a little woodsy. I have no sympathy for you mom. I live in a more urban area compared to her, even though I'm not in the city. She once commented to me about how much easier it must be for me in the snow. I said "You have no idea. You have a car! People don't shovel sidewalks and bus stops!" The aftermath of snomagedden had me constantly praying for my life. The bus stop outside my building always gets cleared ASAP but when I got somewhere I'd discover their bus stop had 5ft of snow on it and so the bus couldn't pick me up to go home.

Some information: Paratransit will only drop you off within 0.75mi of "fixed route transit." That means a bus/light rail/subway/metro stop. It was designed to make accessible what is available to the able bodied and less disabled public. If somewhere isn't reasonably accessible to them (0.76mi, they're strict) paratransit won't go there.

Which brings me back to ponies. Ponies don't generally live close to bus routes. Can you imagine a horse trying to catch a bus? I was thinking of riding at ROSES but they're way out of range. Found this other place, called up twice and said "Can you tell me if you go to this address?" Twice I was told yes. But then I tried to book a ride. A no go. A google maps investigation revealed that they are 0.9mi from the closest bus stop. So I looked into getting a PA. He moved after a few weeks, which is just as well, because he had a thing for me and it was awkward. Must do a back post about that.

In the few weeks he was around, I stared at bus stops and buildings along the road. One day I spoke with a friend, a wheelchair user who likes to describe herself as being the size of an 8yo. "I think I found a place," I said, "but it is still 0.3mi up the road." I figured car drivers have a harder time seeing her, and if she would do it...

"You can't roll 0.3mi in your new chair?" was the response.

"Well there's no sidewalk, but the shoulder is really wide and the road isn't all that busy."

I would never roll in a lane. I'm nuts, but I'm not suicidal. I also would never do this in the dark, but this was May, or would never get dropped off at the closest place they would take me (0.1mi closer) because it is across the street, and I would never cross traffic in the middle of the road. This place is on the same side of the street, and it's actually next door. It borders on their hayfield. ARGH! They refuse to take me next door because although their property is well within limits, their driveway isn't!

"So what's the problem?" she asked.

"[I listed some people] will freak out."

"Well don't tell them."

Except how are the people at the barn not going to find out? They did freak out. But what would YOU do? Look for a new PA to pay $3o to drive you round trip or pay paratransit $3.70. You know what I'd do... We're trying to figure out how to get some sort of bubble placed around the place since their property is within limits. If it wasn't I'd let it go.

In the meantime I was convincing drivers to drop me where I was really going instead of next door, explaining the situation. Most of them were cool and understood to keep it on the down low. Until the last week of June when someone thought she was being helpful and called the address change into her supervisor. I'm lucky they didn't kick me off, but they're watching me, I'm on their radar.

So for now my trainer is picking me up from next door, but I'm still OK with rolling down the street. It's not rush hour, it's not busy, it's broad daylight, and the choice was pay a PA or get half hr massages, so I won't feel the need to cry [see 1st paragraph]. What would YOU do?

Need Advice From Female Wheelchair Users: To Switch or Not To Switch?

Back in 2006 I did a 10pg research paper on physical and sexual abuse of women with disabilities. I'll try to post some references tomorrow. While what I read didn't surprise me, it sure did scare me. There were multiple categories I focused on such as spousal/PA abuse, abuse by parents/relatives, and what scared me the most, although I am pretty mobile and this is unlikely to happen to me, is the possibility of abuse by medical professionals. One or two articles I read talked about women who reported being refused access to their mobility aids until after they were taken advantage of.

When I aged out of my pediatrician, I went 5 years without having a physical, which scared me. I've heard of people who caught serious medical conditions before they were symptomatic, just from a routine well check up, and if I'm going to have a serious medical condition, that's how early I want to find it. I wasn't so worried about abuse as I was about some Dr being annoyed by me. I have inconvenient spasticity issues for some exams, if you catch my drift, and I was worried that if things took more time they might not be so receptive to having me as a patient. I didn't want to just pick someone out of my insurance book and go in blind.

Then one day I met 2 married wheelchair users, and some time later in the middle of a conversation I realized hey, I should go to their doctor. At the time her office was less then 2 miles from where I lived, now it's across the street. Being rolling distance, now walking distance, is definitely a perk.

In the little over 2 years since I got that referral I've been over there 3 times. I don't have much use for a primary care doc other then relieving my constant anxiety that I have some kind of cancer and I have no idea. The 1st time she was OK, and it was a big relief that she was, of course NOT phased by my spasticity. It was a very trusted recommendation.

The second time I went I thought maybe I had strep, and that's when I realized she must double or triple book. I waited a ridiculously long time even though I had called ahead, and then saw her for less then 5mins. Turns out it was just a cold.

When I went for my second physical I also waited way over an hour for an appt scheduled in advance, and she definitely rushed that appointment. By the time I finally saw her I was cutting into her lunch hour.

Back in March I thought I had a serious reaction to one of my meds (I didn't) and my psychiatrist never got back to me even though I emailed him pictures and called him to let him know I emailed him pictures (so I ditched him, it wasn't the 1st thing he did, it was the last straw). I was trying to avoid the ER. When I couldn't make the one time I was given, her office staff never got back to me with an alternative. I went to the ER.

I read recently in Urbanite Magazine that a very local community hospital is doing some revamping in preparation for the implementation of the ACA. If you don't want to read the whole article, basically in a few years if practices change certain things in regards to the treatment of MediCARE patients the government will give them a bonus. They're really doing an aggressive campaign and since I've been typing this post I've heard their radio commercial about their brand new satellite primary care offices twice.

I'm by the main hospital once a week. And by by I mean across their parking lot. The only thing that separates their parking lot from the other parking lot is a parking gate. So besides across the street, this is the most convenient you can get. I should also mention that during the warm months I roll over there.

My current primary care doc takes my insurance but I'm pretty sure not mediCAID, and as I recently qualified for the buy-in and it will soon be my secondary, I'm evaluating who I see. It's part of the reason I ditched my psychiatrist. While I'm not planning on a physical for 9 mos, their incessant radio commercials have me thinking. If they don't take mediCAID and they're so closely linked to a hospital, that's pretty shitty. Their primary care/family physician website says that they accept most insurance plans including mediCARE.

I may call/email over their and check, and I also plan to check and see if they have adjustable height exam tables. My current doc does not, and I would switch just for that. It conveys a certain philosophy of inclusiveness. Besides that though, I would be picking someone blind without anybody else's experience to go off of. That anxiety about my spasticity making a doctor uncomfortable is creeping up again. I don't need to deal with someone like that. On the other hand, although I am pretty comfortable having more intimate exams with the doctor I have, I'm not comfortable with the fact that I feel my time is not respected. The article says that the hospital is in the process of switching their physicians to a salary from the current fee for service, so that hopefully won't be an issue.

If you've managed to get this far, what would YOU do? I'm really interested in opinions. And thanks Jay for the picture.

A Quick Wordless Wednesday

Still EXHAUSTED from work, so here's a quick photo post. For some reason my brother wanted me to have a birthday cake at his wedding, so here's the 3elove cake my mom and I designed, complete with handcuffs!

WHAT A WEEK!

My brother got married on Sun, I had a 3 days worth of work trainings the last week in March, I started my work training program Mon, my 26th birthday was Tues & I practically slept through it, I started horseback riding Thurs, and I am EXHAUSTED! So for lack of the ability to write anything, here's a video from the wedding:

My brother's wife is Japanese, her parents don't speak english, and all of a sudden he walks up to the balcony during the last song and takes over! Jason & Megumi unfortunately only caught the last few seconds as they were taking pictures on the moon bounce...

I Should Have Been Blogging a True Story Tuesday

Click on the picture to see the others

In honor of the fact that I have my 1st horseback riding lesson in 2 days, a horsey story:

When I was 5, almost 6, I had my 1st major surgery. I was in a camouflage body cast, as it was 1991, 1st gulf war era, and I can't remember if I ever mentioned that my brother and I were into playing army with our grandpa, who was a WWII vet. But that's neither here nor there.

This story comes after my surgery, when I did a crazy amount of rehab. 12hrs of PT per week, plus my regular hrs of OT & ST. My adductors (inner thigh muscles) have always been and will always be a major area of concern (I'm trying SO HARD not to cross my legs while I am writing this), so I think it was my main PT, but who knows at this point (I was working with 5) who decided to leave this foamish bolster thing (shown right, but without the chain on the end) that she just wanted me to sit on while I was watching TV. Just so I'd get some kind of passive stretch.

But I would have none of it. They wanted me to do more?!?! If I was a little older at the time I would have said,

"HELL NO! LEAVE ME ALONE AND GET THAT DAMN THING AWAY FROM ME!"

Or something like that. Nevermind my parents pleaded with me and tried to reason with me, telling me that she just wanted me to practice so that when my trainer was back in town and my Dr said I could go riding again, I could go riding again. They tried to convince me that if I didn't sit on the thing I wouldn't be able to get on a pony at all. I was just too smart to fall for that.

In desperation my parents tracked my trainer down and called her at her winter house in Florida. They asked if they could drive over to the barn and borrow my saddle until lessons started up again in the spring. Would she let someone know they were coming by? My grandpa, who became an engineer after his stint in the army and loved to build things, came down from New Jersey and built me a sawhorse. If you don't know what a sawhorse is, they look pretty much like the picture to the left. My saddle was perched on top, and somewhere in my parents' basement there are pictures of me sitting on it in the living room watching TV with a big smile on my face.

While I only vaguely remember this, I do remember the excitement of having my saddle in my house! *Squeal of joy* My parents had decided to surprise me! I also remember the first time I got back to the barn that spring, and before I was allowed to get near a pony my trainer made me prove to her that I would in fact be able to get on, and then made a huge deal out of it!

[OK, just noticed all of my TST posts have to do with surgery. There's something wrong with that]

My National Pancake Day Experiance

Totally unrelated to this post, Emma says it's the International Day of the wheelchair today. If I had it in me I'd write the post I've been meaning to write for the last 2 weeks since my Jazzy broke, but I don't, so that'll have to wait for another day. However, if any readers know of other "International Day of the Wheelchair" posts, please leave links in my comments.

Last year I wrote about how I've always wanted to go to National Pancake Day (NPD) and never make it. Today I'm writing to say that I went today, and I'm totally dissatisfied. First of all the IHOP my friends chose to go to was rather drabby and a could use a fresh coat of paint. It was also chaotic (to be expected) and the acoustics were bad, so it was hard to hear the people at the other end of my table, and there were only 5 of us! It didn't make for a relaxing experience.

What I'm most dissatisfied with is that I have no idea where my donation went, or even if my donation went anywhere at all. My friend commented that maybe they're pocketing it all. I replied "Maybe they are." I wouldn't be surprised. Ok, so I only donated $1.14 in change -- I am low income after all -- but every little bit helps and I hope my $ goes somewhere. Nowhere in the restaurant was there clear signage as to where the money was going. The National Pancake Day website says the $ goes to the Children's Miracle Network (a charity close to my heart) or other local designated charity. In the DC area the $ goes to the Leukemia & Lymphoma Society (LLS) (another charity close to my heart), but I of course am in Baltimore.

All the materials in my restaurant said something like "Make a miracle for a child by donating to your local charity," but nowhere did it say what that charity was. When the waitress came by she asked us if we were there for the free pancakes but never mentioned a word about making a donation. The giant cardboard donation box had a sign taped on it that said "MAKE A WISH," which then had me looking quizzically. Do they want me to wish on my donation or is the money going to the Make a Wish Foundation?

Seeing this look on my face the hostess said "The money is going to BREAST cancer." [emphasis mine] Which only leads me to believe that the hostess is illiterate, and that the $ is in fact going to LLS. You see taped to a window all disheveled like and strewn all over the floor were these paper signs that said "BEAT cancer" [emphasis mine] on the top with the LLS logo on the bottom and ample space in the middle to write your name that you had donated.

"BEAT" looks an awful lot like "BrEAsT" doesn't it?

I wish they were more organized. I wish I knew where my $ was going. I won't be going back to that IHOP next year. Anyone else go to NPD? How was your experience?

Thinking of Starting a Mah Jongg Game

Having absolutely nothing to do with any of the typical topics of this blog, I went out shopping yesterday to buy accessories for my dress for my brother's fast approaching wedding, and the accessory store we went to had 3 pairs of earings, each tiny mah jongg tiles in a different suit. As earrings were being sold "2 for" we got earrings for me for the wedding and my mom got a pair of mah jongg earrings for a present for a friend.

I've been thinking about mah jongg since then. Not the computerized game, but the actual board game [see right] that Chinese men and Jewish women play. My mom taught me how to play when I was 13 or 14 while I was home for months after my largest surgery. I have my own set and I used to play all the time with her friends and occasionally her friends daughters, but like horseback riding, playing mah jongg is another one of those things that I used to enjoy which I haven't partaken in in long time.

Mostly older Jewish women play mah jongg and there are a lot of seniors in my building. I don't live in the most Jewish area of Baltimore, but any area of Baltimore has a higher Jewish population then most of the country. So I am thinking of trying to set up an every other Monday evening mah jongg and chinese food night in my building's party room with women who live here and also play. Something to use my mind. A thought.

Since When Do They Make IPad Apps for Cats?

My brother's cats, Jet on the left and Killer on the right. I found the pic on his fiancee's FB page back in Dec. Game for Cats

True Story Tuesday: "Grandpa you're a WUSS!"

Click on the picture to see the others

I'm renting Breaking Bad, and I've watched the first season so far. I haven't had access to cable most of the time it's been on, so it's the first I've seen it. I don't know why I'm watching it. It's bizarre. Actually, I do. The son in the show, Walter Jr, played by RJ Mitte, has CP, and he's a real honest to g-d cripple in real life. Unfortunately, I found out from IMDB that the show has made him 'crip it up,' as I like to say. But whatever, he's still authentic, and I'm not sure you could train yourself to have a pronounced 'CP slur.' That's what impresses me the most, he's on TV and he even sounds like a cripple! I find that groundbreaking, because they don't portray him as a supercrip, he's just a 15 year old mainstreamed high school kid.

A big part of the show, from the first episode onward, is the premise that his father is diagnosed with stage 3A lung cancer. In the first 4 episodes he refuses treatment, so in the 5th the family holds an intervention. When it comes to Walter Jr's turn to speak, he says

"This is bullshit ... I'm pissed off ... I-I'm pissed off. 'Cause you're being -- You're being... Y-you're -- You're a pussy. You're, like, ready to give up ... What if you gave up on me, huh? This here [he picks up one of his crutches], all the stuff I've been through, and y-you're scared of a little chemotherapy?"

That little speech gave me a flashback. Brought me right back to when I was 8 years old and my grandfather, 67 at the time, was diagnosed with prostate cancer. They cut it out and he was fine for the next 10 years, until he died of a massive heart attack.

I remember sitting in my grandparents kitchen, his surgery had been scheduled, but I don't know how long he had before the date. It could have been the next day, it could have been scheduled for a month later. Anyway, people were talking, and he was scared. I just looked at him with the innocence only a young child could have, and stopped him right in his tracks.

"Grandpa you're a WUSS!" I shot back.

I think I was too young to know the word "pussy."

He didn't even know what the word wuss meant. Never heard it before. I was too flabbergasted at the fact that he'd never heard it before to explain to him what it meant. My mom had to.

I had already gone through my first surgery 2 or so years before. Hamstring transfers that left me in a spica cast for the following 8 weeks. [man I wish they had this cast cooler thingy 20 years ago, or even 9. It's a good pic of a spica] So many months of physical therapy. My grandpa had none of that. What's a little prostate surgery to an old man, I thought? C'mon!

I don't remember if I was scared of that first surgery or not by the time it came. My parents put me into a few months of psychotherapy before. But, if I was, by the time I was 8 I didn't remember being scared at all. Bitter still at that point, very much so at the surgeon who had lied to my face about the outcomes, but NOT scared. I was 5, you're 67. Man up!

Certainly gave him a different perspective...

I Went to the Movies on Christmas

[This is an old favorite, this song, and by old I mean since 2007 when it came out and went viral among us Jews. Especially us local Jews -- the shopping center it was filmed at is 20mins north of me.]

It feels like this post is up a bit late. I keep meaning to post this video on Christmas and always forget. [although apparently I linked to it once] I am laying here in bed writing this at about 11pm on Dec 24th, but there were things I wanted to get up last week, so this is posting on January 4th -- and so be it.

There's thoughts swarming around my head wanting to get out, and a shrink who isn't Jewish and thus is on vacation somewhere north of here (until today, the 4th) with her family. I hope this doesn't come out wrong and offend my best friend, but all I can think of is a previous Christmas, 2007 to be exact, the best Christmas I ever had. A Christmas filled with my old friends, whom I haven't talked to in 14 months (except for that awkward time in April or May when I ran into someone in B&N).

Our relationships were much more dysfunctional then they are with my new friends, so why is it that every few weeks I wax nostalgic, look at their facebook profiles, and briefly consider giving them a call? I can't because I lost my last phone in a giant pile of snow last winter during snomagedden and no longer even have their numbers. I could send them emails, but I always think better of it. I have recently clicked "like" on someone's birthday party photo and got no response. I don't know what I would have done if I had.

Anyway, Chinese food on Christmas was never a "thing" in my family when I was a kid. I only remember starting to go when I was older, sometime in the last 10 years or less, when some family friend (I can't remember whom either) invited us to go. It was fun, the crowds, the lines out the door of people (Jews) waiting for a table, running into people from shul, or maybe an occasional Mah Jongg partner you didn't know would be there. There's more then 1 Chinese restaurant in town. You never know who's going where. It's like a huge party, but nothing remotely resembling Christmas. I haven't done Chinese food every year, some years I stay home alone and order in, some years I don't even order in.

It was 2007 when going out with my mom stopped. My mom started going to Rhode Island with her then boyfriend (I know, I know, you hate that word), now husband to do real Christmas, even though he's Jewish too. I decided to have a "National Chinese Food & Movie Day" party since I'd be home alone in the totally awesome luxury condo we lived in at the time (I wax nostalgic about that condo too). I invited all 20 Jews I knew and still spoke to that were in the area and were between the ages of 18 and 23. Just my 6 closest Jew friends came (I knew that would happen) and we had a BLAST all night. We got Chinese from the place that was so close I could even walk there, and I think one of the movies we watched was Reign Over Me.

This year I am going out with a friend who is not Jewish but is choosing not to go home for Christmas. I'm being a supportive friend to her, making sure she is not all alone and depressed on Christmas, and she in turn is being supportive of me. I don't get out as much as I should. "We'll do Jewish," I said when she told me she had decided not to go home. We saw True Grit. I don't recommend it unless you like seeing a lot of people shot to death.

But I can't keep thinking about how different it is to "do Jewish" with other Jews and how I won't be running into anyone I know. None of the Asian restaurants in walking distance are open, and although I chose one 20mins away (thinking we were going to a different movie theatre) we have chosen not to drive. I feel completely anonymous this Christmas, and that just seems weird. I mean, I'm in Baltimore. In the US the second highest concentration of Jews, after the NYC metro area, is the Balto metro area, and yet I no longer have a Jewish community here. If I chose to stay home all day it'd be different. I should be running into other Jews this Christmas. I should be with other Jews. But I'm not.

This Christmas, I miss my Jewish friends.

"School is no longer a haven. It's a place of FEAR."

A follow up video

Sounds too close to my experiences, and that fact doesn't make me feel any better, it makes me feel WORSE.
Here is the 1st one.

Christmasy? Or Not?: A "Wordless" Wednesday

Our Gingerbread Village

These first two are pics of the one I did. It's the "chalet" says the box

The whole village

Done Thanksgiving Day with my cousins / brother / his fiance. I was like "But we're Jewish." My mom tends to agree with me, my brother goes "It has nothing to do with Christmas. It's winter. It has more to do with Hanzel and Gretal then Christmas." You think?

You Have to Practice Being Proud?

I think Jessica's got it down.I know this went viral several months ago, but it's the first I've seen it.

True Story Tuesday: Telling the Passage of Time

Click on the picture to see the others

My brother is getting married on April 3rd. They weren't dating long when they got engaged. Only 10 months, and it's been a bit over 3 months since then. This doesn't matter to the story at all other then to mention that they live in Los Angeles and Thanksgiving was in New Jersey, and being that it's only been 13 months and it's not like they live around the corner, she had never been to my aunt's house. So she didn't know that my aunt is never without a camera and that there could easily be 1,000 family photographs in that house. She doesn't take photos of things, only people, mostly family. I'm family of course, so there are a fair amount of snapshots of me around. And my brother.

So, very soon after we walked in the house my cousin said "Go look at that roll of photos over there. There are pictures of [my brother] when he was little in there." There could be 100 pictures right there just to flip through, at least 50, all at least a decade old, many older, mostly of just my cousins, but many of other family. The best choice if you want to see young pictures of us. Being that they don't live around the corner from my mother either, I doubt she's ever seen young pictures of my brother.

It wasn't long before he was looking at one trying to figure out how old he was. He was doing ok, but he doesn't have the brain for this kind of stuff. It's not his speciality, so I jumped up. "I was 9, you were 11, so and so was... I can tell by my eye glasses." I always had interesting eye glasses growing up (you all should see my mother's) and kids don't keep them long. They grow out of them.

On to the next picture. There are 20 people in this picture, I counted later. Missing are my grandparents and my Grandma's brothers and their wives. It was just the offspring and 2 of the offspring's offspring. No one else's kids had had kids at this point. I was on the couch, the back row, my head barely visible, as I was slouched over, as CPs often are. I wish I could get this picture to post it here, but I doubt if the other 19 people want to be on the internet. There were a few rows of people in front of the couch in a room not big enough for the 28 people that were probably in there, so unless you really, really looked you can't tell what I'm wearing. You certainly can't tell that I'm wearing overalls. You can't see the front of me, it's a very crowded picture and I'm blocked.

But what you can see is a little bit of my right leg. I must have had to keep it sticking out. Elevated? I don't know, this was quite awhile after the surgery. "I was 10. You were 13," I said matter of factly. "Those are the overalls I had when I had my leg in a cast." I said this in such a tone as if to say don't you dare tell me that wasn't when this was taken, because I know that's when it was.

I know because I had 5 pairs of overalls that my mom got me that fall to go over my cast from my second surgery (only 1 leg that time thank g-d). Overalls have wide enough legs to get over a cast, not everything does, pants are hard to find, and overalls were thankfully very much in style in 1995. These were olive green khaki, not plain jean that I have had at other points in my life.

Next picture, me, my brother, our 3 cousins, ages 8, 6, & 4, alone on the couch, same annual extended family Chanukah party. I am indeed wearing olive green khaki overalls. The right leg is pulled up revealing a very ugly cast. It was off white. I woke up from the surgery with it, the surgeon having not asked what color I wanted beforehand. I was pissed. I don't know why I requested my cast show in the picture, but I'm sure I wanted it that way, that I requested it.

A good way to tell time, by a cast on my leg. The way I often tell time. I've had 6 surgeries. And a lot of stories. See last week's True Story Tuesday. Not the way way most people tell time, I am sure. But this is my life, and this is how I tell time.