On Privilege Part 3 I think

I wanted to write about this 2 weeks ago, and am getting to it on the eve of a much needed massage appt. I said in an earlier post that I probably wouldn't write about the national action, but I guess in a sense I am. National actions are generally painful for a lot of people. I can't speak for other disabilities, but with CP, a chronic pain condition, being out all day with limited positioning options for days at a time in unpredictable weather can increase spasticity to the point of being near tears.

I stayed in a room with 2 other people with CP and a PA. I of course was in some pain, but I'm not sure I mentioned it. I'm in pain everyday; if I mentioned it to people everyday I'd be such a debbie downer! However, unlike a former friend, I do sometimes, and don't look down on other people who feel the need. I'll most likely empathize with you. And complain with you if your doctor is an idiot. If certain anti-spasticity pills aren't working and cause side effects you don't like, try something else! Although I don't know whether or not this person asked...

Anyway, I feel privileged that I know how my body works; that I ask questions frequently and can make decisions that benefit me. I feel for the people that either cannot, or do not know how. I empathized with the person who told me she was in pain. "My hips hurt. It hurts all the way from my hip to my ribs, and I know I didn't walk at all..." She was having the bad kind of muscle spasms, the kind that pulse if you know what I mean; the kind that make me actually cry.

"Well of course you're hips hurt! (and of course your ribs hurt I thought in my head) They hurt because your not walking!"

She was in shock that I said such a thing; that I could respond that way. I'm the first person who ever has. Apparently everyone else says "but you weren't even walking!" Except I know that your hip flexors attach to your pelvis and then cross under your abs diagonally and attach part way up your spine. I also know that the back my chair, unlike most peoples, has the ability to shift from a 90 degree angle all the way to 180 degrees flat, and is drivable up to 125 degrees, allowing me to change the position of my hips back and forth throughout the day. Most people have tilt, which counteracts gravity or some such thing, but doesn't change the way your body is bent. Your head goes closer to the floor, your feet go up in the air, but your back and your hips are bent the same way all day. I'll wait while you come to a logical conclusion...

Which brings me to my massage. I'm privileged enough that I have control of 42% of my income, and I'm privileged enough that I have a total income that is over 300% of SSI. A lot of disabled people don't have incomes that high and don't have any control over the little that they do have. I'm privileged enough that as of July when I started working I have a 15% increase in my income and that I don't have to use it on food, clothing, or shelter. I'm privileged enough and educated enough to be able to use this extra resource to pay for non-reimbursable medical expenses. Not everyone can get all they need. For a long time I couldn't, but now I can.

Depending on how you look at my monthly expenses, I spend half of my paycheck every month on massage appointments. I don't view it that way. I view it as 10%, as I shifted money from other things to cover it, but it comes to 7.5% of my income either way you look at it. It would be 45% of an SSI check.

I'm privileged enough that I know how to use the internet, can research and ask questions, and was able to find a massage therapist who is walking distance from my apartment -- she's not even a block! I don't have to deal with paratransit to get there! I'm privileged enough that she treats me sliding scale, and that we didn't have to have an awkward conversation about it.

I'm privileged enough that I was able to schedule a massage appointment 24hrs before I left for DC, and less then an hr after I got home. I was lucky enough to not be in nearly as much pain as I was in the fall, and wanted so badly to give this person my appointment. Except her group home controls all of her money, and I've never met a massage therapist that would treat someone for free. It's exhausting work, and imagine what would happen if that got out! Plus this person lives aprox 20mi away, and paratransit's a bitch!

And so I sit here contemplating my privilege once again, and once again I feel guilty about it. I'm a "have" who knows way too many "have nots." This isn't a luxury. It's a necessity and an injustice.

Access and Hypocrisy

I feel like I must preface this post by reminding readers that I am a die hard ADAPTer. My commitment flows through my veins 24/7, even if my constant depression and other issues make it almost impossible for other people to see it. However, two things happened over the course of a little over a week that I feel have questioned my credibility. Right now I'm up not able to sleep because of a few things, one of which is that I'm trying to reconcile the values I've developed as an ADAPTer with the positions I'm putting myself into.

The first thing that happened was that over the winter I decided I wanted to see an art therapist. I never liked doing art in my youth; my visual and fine motor deficits causing me to put up walls due to frustration, but after I spent 7 weeks in the summer of 2007 taking Intro to Art Therapy, art became my #1 strategy for avoiding my overwhelming anxiety. I say avoiding because instead of facing my anxiety head on I would spend hours with crayons and markers in an effort to ignore/push aside how uncomfortable I felt. This actually made my anxiety worse.

I created some great art though, and while my art will never hang in a professional gallery, I can no longer say I am "bad at art." I haven't touched my art materials in 2 years though, which is a good thing. A conversation with a friend once went like this:

"You want to come over and do art?"

"I'm not in the mood."

"You don't have to be in a good mood to do art."

"No, I have to be in a bad mood."

However, I noticed some patterns when I was doing art and I don't understand what they mean. I've been wondering all these years and finally over the winter started seeking out an outpatient art therapist.

The second thing that happened was that I decided to pursue an opportunity at work. There has been a recent staff turnover, and I can, most likely, pick up a few hours a week helping to develop our transitioning age youth program, which in 3+ years has never gotten off the ground. I've had some great ideas that the people running it agreed were good, but then nothing happened, and I decided it wasn't wise of me to strong arm them. I decided I wasn't willing to work on this unless I was being compensated.

What do these two things have in common? Both are located in inaccessible offices. The art therapist works within a group which is located in an older building, and her office has 1 step outside. Just 1 -- it'd be easy to ramp. If I ignore the issue, I have to be careful of where I am coming from or going to. I obviously can't bring my chair with me. While I have that "luxury," for lack of a better word, of deciding to do this, I don't feel right about it. In the 5 years I have been seeing my other shrink I have gone to appointments from places like our state capital, or gone straight from her to an ADAPT mtg, lugging bottles of soda on the back of my chair.

The organization I work for operates programs in 5 locations. I already work at 2 of them. One I bring my chair to 6 months out of the year because it's so close to where I live that rolling to work is faster then waiting for paratransit. The other I have brought my chair to twice over the last 10 months, both times because I was coming from somewhere. Out of all 5 locations, my new position, should I choose to ask for it, will be located where our executive offices are. The only location that is completely inaccessible. Not only are there steps up to both of the outside doors (one without any railings), but the main floor, the one where all the programing is, is divided in half by 3 steps. In the two years I have worked here I've rarely had to go there, so I decided not to pick this battle, but if I'm going to be working there regularly, I really don't feel that I need to not go places because I won't be able to get into work afterwards.

The easiest thing to do would be to state that they must move the program, however I don't feel like this would be fair to my new boss (I'd have 4). I'd only be working a partial shift, but with the staff turnover her hours are being expanded so that she's working a full shift that day. If we move locations it cuts into her hours. So I guess that means that I ask (demand?) that ramps be installed. The thing is that 1, I'm not sure it is possible to ramp the inside steps, meaning that if we ramp one set of the outside steps we'd literally be doing half the job, making only half the place accessible. I could get out of my chair and struggle with the inside steps, but not everyone can. A half job is not OK with me. The other thing is that they're not legally required to do this. I have a good enough sense of our finances to know that they can claim "undo hardship." Is it my responsibility to find a way to get ramps installed at a discount, or theirs? This I don't know.

My first inclination was to ignore both of these access issues, push them to the back of my head and pretend that they're OK. I've realized that I can't bring myself to do this, which is actually a relief. I won't spend all my time feeling like a hypocrite. I won't spend all my days feeling like a sell out. I won't be limiting how I plan my days. However if I bring these issues up and they can't be resolved, am I limiting myself in other ways? Am I limiting my ability to knock down my psychological barriers? Am I limiting my ability to develop valuable work skills? I'm not OK with that either.

Which is leaving me at a loss, and is contributing to my insomnia. Anyone know where I should go from here? That is if you've gotten this far...

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...

I'm a Work in Progress: Work, School, & All That Jazz

I work for a non-profit organization that has 5 different locations. I currently work 2 days at 1 location and I'm on call a third evening a week at another which is much closer to my house. Between all of our locations we're open 6 days a week, but the most any one center is open is 4 days. I heard through the rumor mill that my location would be getting a grant to expand and offer more services, and we would be open more days. Yesterday it was confirmed by our executive director that my location would be open 7 days a week, meaning that current employees should be getting more hours and maybe some on call employees from other centers would get permanent hours. Although he wouldn't say anything specific other then that the expansion will begin in February.

This is really exciting news as another shift means a 50% pay increase which will allow me to be more financially independent, feel more like an adult. They're also the perfect hours for me. I don't have to be at work until 1pm, don't have to leave until 11:45am (to get somewhere 30mins away, paratransit, ARGH!), so I have my alarm set for 10am. It gives me an "excuse" for my chronic fatigue to not be perceived as laziness. "I'm never up that early, I work off hours."

I've also for the last 7.5 years wondered how I'm supposed to work enough to be completely financially independent and still have time to do the things that will keep me mentally and physically able to work. Right now I work Fri/Sat. If I can manage to work Thurs/Fri/Sat or Thurs/Fri/Sat/Sun this would allow me three weekdays for horseback riding, massage appointments, shrink appointments, and personal trainer time AND allow me to pay for them. I also have some meetings related to long term care reform that are conveniently held on my off days. Working weekend afternoon/evenings -- MY DREAM JOB!

I wouldn't mind mornings if they weren't so early in the day!

The problem? I want to work & be more financially sufficient but I also want to go back to school and finish my degree. I can't imagine fitting horseback riding, massage appointments, shrink appointments, personal trainer time AND working 24-35hrs/week, plus keeping up with my advocacy work, even if I take 1 class. I can't see fitting in a class with my current schedule without it being a once a week class. Maybe I could fit in a Mon/Wednes late afternoon class or a Tues/Thurs morning class? But when would I have time to do my homework? Would I have to wake up at 7:30am everyday to study for 2 or 3hrs? Would I have to go to the gym from 8-9pm? Would I collapse from exhaustion from constantly running around and getting a 1hr sleep deficit everyday? Because then I physically wouldn't be able to read, study. So would I have to quit working when I decide to go back to school? Then how do I pay for my horseback riding lessons, massage appointments, shrink appointments, and personal trainer time -- the supports that will keep me in school?

Such are the dilemas of life...

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?

Frustrated, Or, It's My Blog and I Can Rant if I Want to

I forced myself to go to bed early (10pm) last night by taking a melatonin so that I would get up early before work and fold some clean clothes. Yeah right. I've been online for the last 2hrs or so, and I've been in a bad mood. I woke up that way. My new position is an adjustment, but it's not even that. I'll definitely grow a skill set from this job. I should view it as a challenge, but this morning all I can view it as is a drag, and it's not even the job that's dragging me down.

My problem is an all to common problem for those of us who don't drive. My problem is PARATRANSIT

My problem is that I've recently expanded my world greatly beyond the <3mi I usually try to stick to, and while it's GREAT for my depression that I'm out and about and interacting with more people, it's almost not even worth it to me. Notice I said almost

Because I can't drive:

• my 1hr shrink appointments, 15mins away, take at minimum 3hrs, once 3hrs 45min
• My first shift at work last week, a 30min drive, was just 5hrs, but took up 8+hrs of my Friday
• My half hour horseback riding lessons, about 35mins away, take up at minimum 3.5hrs, but in the half dozen times I've taken paratransit out there, they once dropped me off 50mins after the time I said I need to be there (always 30mins early, I'm not stupid), took forever to get me home, and the whole ordeal lasted probably 4.5 or 5hrs. I'm lucky that the guy who dropped me off had his dinner break in between, was actually assigned to take me home, and decided he'd just sit their and wait for me. Otherwise, I can't imagine.
• The only place I can get to in a reasonable amount of time is my new psychiatrist. A 40min roll in the warm months will only take me 60mins with paratransit in the cold months. BTW, her office is about 2.5mi away.

So forget paratransit altogether.

• A trip to the grocery store, a <5min drive, is a 20min roll each way
• A trip to my PT/Massage therapist (2 different people, same location) is a 15min drive, but takes 2 buses and I try to be at the 1st bus stop (directly outside my door, great apartment score!) 60 or 45mins (cuttin it close) early
• That 2.5mi, 40min roll to my psychiatrist mentioned above, I'm sure that doesn't take more than 10mins in a car.

I know I'm not the first, and certainly not the last, but I've still had it up to here! [picture my left hand way above my head]

PS. Unfortunately I don't seem to qualify for state run programs that help cover the cost of PA services (the state does pay for PAs to drive people places) because I'm not at risk of institutional placement if they don't.

I Should Have Been Posting This Video

Yes, that's ME! Why do my eyes keep darting around? And where can I get that photo of me at 3:07? Self-centered tangent, I know, but what a GREAT profile pic that would be...

This video was recorded outside the Baltimore City Public Schools headquarters at a pro-Wisconsin MoveOn rally. I went because I told a friend I didn't want to schlep down there, but I'd go if she went. She said she'd only schlep down there if I went. She canceled on me at the last minute, when it was too late to change my paratransit ride. A frustrating day, but worth it I guess, now that I've seen this.

There was a guy off to the side interviewing people after it was over, and since I've joined ADAPT I can't pass by a camera and pass up a chance to spread our message (sounds like I'm a missionary, doesn't it? That's not how I mean it). So I rolled over and this guy asked me one simple question. "Why are you here?" It turned into this.

Two things that bug me: 1) I call ADAPT a "cross disability rights coalition." I meant to say organization, but I used to belong to a Maryland statewide group, the Cross Disability Rights Coalition, so I say "cross disability rights" and my brain goes straight to coalition automatically. Oh well.

2) I keep talking about "taking money away from vulnerable individuals." Really? PWDs are vulnerable? Don't call ME vulnerable. I can't believe I spread such ableism. Please forgive me. I was thinking on my feet (so to speak, I was sitting, haha), but there had to have been a better way to explain the urgency of getting the bill passed.

Overall though, I think I did a great job.

Quote From Some Random Guy

Yesterday I went to Annapolis for the senate hearing on the "Lorraine Sheehan Health & Community Services Act." I can't tell if it went well or not, we shall see. This post isn't really about that.

I got picked up by paratransit where I live and got to Annapolis right about the time I said I needed to be there, however my 5:15 pick up from Annapolis that was supposed to take me to OOO didn't come until after 8. While I was waiting in the lobby of the Miller Senate Office Complex for 3hrs (thank g-d I had brought both my lunch and dinner with me) 2 crowds of people from 2 different events both arrived and left. I got many puzzled looks from people on their way out.

At about 7:30 I even got offered a ride home from some guy. He asked me where I live and I told him the city. He then said he was going my way, he lives in Baltimore. Did I want a ride? A guy I'd never met before...

He then takes out his wallet and is about to show me his business card.

"I work for the Carroll County government," He says. "So you can trust me."

"That's ok," I replied. They said they'd be here about 8."

Since when does working for government make someone more trustworthy?

National Medicaid Budget Cuts News

Maryland ADAPT is currently, as we speak, in Annapolis, our state capital, with our newest member Toni Torso (below) talking to legislature. Check out UpittyCrip for live updates through the next 4hrs.

On the left you see Toni, a quintuple amputee, sitting in her manual chair modeling her purple 3elove zipper hoodie and orange shorts. She is wearing 7 buttons with different disability rights statements.

On the right you see a close up of Toni's MTA Mobility (paratransit) ID. You have to have a photo ID to get into the building of course. Sorry there's glare. The shirt she's wearing in her ID photo (thanks Texas) says "DON'T CUT MY SERVICES"

While you wait to see our news coverage, here are some other Medicaid budget cuts news headlines from around the country sent out by NationalADAPT through Twitter last night.

UKIAH CALIFORNIA FACING DEVASTATING STATE BUDGET CUTS

RALLY IN IDAHO PROTESTS PROPOSED MEDICAID CUTS

IN NEW JERSEY, GOVERNOR CHRISTIE'S BUDGET EXPECTED TO INCLUDE MEDICAID CUTS

I'm Hiring My First PA

To follow up from last years Valentine's Day post I will be starting horseback riding lessons in about 6 weeks I hope! I will be starting a temporary part time job and will be saving most of that $ for horseback riding lessons. I can hopefully stretch the $ out for a year by only going once every other week. The problem, which is not a problem is that paratransit only operates within .75mi of a bus/train line and of course barns are in the country and buses typically don't operate in the country.

I was fortunate enough to find a barn in civilization that has both a typical and therapeutic riding program, but of course it is still 0.9mi from the closest bus stop says google maps, and the paratransit scheduler people say it's 1 street too far. Although I could find the closest possible address and huff it, that just isn't my idea of stress relief. That's stress creation, and riding is supposed to be stress relief. So I'll be paying someone (a student) to drive me there and back. There is a state program that could pay back most of the $, but I've heard there's a waiting list, so I'll be paying out of pocket and looking for someone who'll do it for cheap. I have several options of places to look. I'm rather excited!

Any advice for a first time employer?

Moms & Botox: What's the Deal? Or, Botox is Relatively PainLESS (and Botox Day is Like Christmas)

I've been meaning to post this since October when Tanis posted about Jumbly's botox appointment. She called the post The Steel-Toed Boots of Motherhood. I read it and thought about other moms that have written about botox, like Ellen and Kathryn. All three of their children have cerebral palsy, all three write about their children's botox appointments with angst, and I wonder why. I am somewhat flummoxed. I thought I wrote a post over a year ago, Botox Day: It's Like Christmas, but apparently I never did. OK, I don't know anything about Christmas (remember, I'm Jewish), but as my appointment gets near I start counting down the days.

In her next post Tanis writes that the day of the appointment was a soul crushing day for her. In 2009 Ellen wrote about being scared for Max. I don't know why Max's doctor puts him under general anesthesia for botox, I've never heard of that. I have heard of using conscious sedation for little children, like what was done with Ellie.

Kathryn thinks that people who think botox is not painful are out of their mind [look at the picture below, it's a teeny, tiny needle]. Jenni and I must be out of our minds then. Kathryn, have you ever had botox? How do you know? She seems to think that the pain produced from a botox shot is 100x worse then a tetanus shot. No, Kathryn, it's not. Tetanus shots are worse. To me, botox shots hurt about the same or less then a flu shot.

I understand that these kids are 7 and 8, and that when I first started getting botox regularly I was 20. I did have botox a few times when I was somewhat younger and unconscious, during surgery, but doing it that way makes it hard to determine whether improvements are from botox or surgery. I also had botox once when I was 18, although hardly any, I think just in my thighs and opted for the numbing cream.

I fully support the use of numbing cream, conscious sedation, distraction like bubbles or I Spy books, or sheer bribery like ice cream, money, or a trip to the toy store for little kids. I might suggest calling in a child life specialist. Getting upwards of 8 shots is a lot for a kid to take. I would have been a wreak at 7 and 8. But for the last five years I haven't opted for anything for pain management. Botox is my pain management. It's a g-d send. I just don't have the patience for EMLA. Having to wait for paratransit to take me to/from my appointment tries my patience enough. Waiting for Emla to kick in might put me over the edge.

OK, OK, I'm being rather misleading. Botox is injected all over my body every 6 months. I get it in 8 muscles, and because they are rather large muscles my physiatrist spreads the shots out and injects more then 1 spot. Of course I feel it. Of course, just like getting blood drawn or a flu shot, my natural CP reaction is that my whole body tenses up even before the needle even hits my flesh. Try telling someone with spastic CP to relax. It ain't happening.

Fortunately, I was told by Dr Gormley, of Gillette, that in the case of botox, tensing the area actually makes it easier for the physiatrist to find / access the correct muscle. Score one for spasticity! Of course it hurts when the needle is in my flesh, but as soon as it is out there is no longer any pain. It doesn't linger. I don't walk out of the hospital in pain. There is some very minor discomfort, but as my current physiatrist suggests, going for a walk afterwards not only helps work the botox into your muscles and helps it to take effect sooner, it also makes that discomfort go away sooner. What do you do if you can't walk? I don't know. Ask your physiatrist.

I always wonder why my doctor always has this look of guilt or something on her face when she is giving me botox. I'm sure the look on my face isn't pretty. I do always utter multiple OWWWs during the appointment. But I always wonder why she doesn't focus on the tremendous amount of pain that she is saving me. Or why she doesn't focus on the giant smile that I'm sure is plastered on my face most of the times she walks into the room. She's there to give me BOTOX! I'm a botox junky. Dr. Alter is one of my favorite people. She's totally got me strung out on the stuff :-)

She should hear the way I talk to other people anticipatorily about botox, with that smile on my face. Or maybe I should tell her that in the weeks leading up to "botox day" I go to bed thinking about botox the way most Christian kids think about Santa Claus (I think I have told her that actually). I'm sure little kids getting botox don't think of it this way, but I know of at least one other person my age (coincidentally a patient of Dr. Gormley) who looks forward to it, although I'm not sure if she looks forward to it as much as I do.

So I wonder why these moms look at botox with such angst, while I look at it as somewhat joyous in a way. Yes, I am injecting diluted botulism all over my body, almost from head to toe (from shoulder to calf), and yes, I'm fully aware that botulism in it's pure form is a lethal form of food poisoning, having done a report on it 8 years ago for 11th grade chemistry class. But the pain I otherwise have, especially from panic attacks, is unbearable. Although I'd like another option, I've rationalized the food poisoning. Why can't mothers?

My Non-Existent Trauma

I'm writing this for someone I know in real life; someone who reads this blog and comments profusely. This person lives across the street. I'm not usually this obvious in calling people out, but in this case I need to be. You still wouldn't be able to google her and have this pop up, so I feel her identity is adequately protected. I am writing this because I don't know what else to do. Repeated conversations over several months have not worked. Maybe a blog post will? I can't say you haven't gotten the hint because I haven't been hinting. I've been straight up. [BTW, I welcome comments from anyone]

I am going to say this for hopefully the last time, because I'm getting very frustrated--

I DO NOT HAVE A TRAUMA BACKGROUND.

Period. The end. I spent most of my last therapy appointment discussing this (you're not the only one who has mentioned trauma in relation to me) and

I DO NOT HAVE A TRAUMA BACKGROUND.

Ok, so that wasn't the last time I said that because I just said it again... but hopefully now it is.

My shrink (who I have been seeing faithfully for the last 3.5 years) said that she has actually been quite surprised that I don't have a trauma background given everything that has happened in my life (both disability and non-disability related). I've got a long list of things that could have had a lasting traumatic imprint on my soul that haven't. I guess you could say I'm rather resilient, which is not a word I would have ever thought to pair up with Cheryl until just now. Not a part of my identity at all. She said

"It's not something that's ever entered my mind with you."

This however has not been enough to end the incessant badgering. It's where I'm at a complete loss now. Because when I asked my shrink what I needed to say to this person, she said "Tell her I've had extensive trauma training and it's not something that's ever entered my mind with you."

I know, I keep repeating myself, but maybe if it doesn't sink in the first time, it'll sink in the 3rd? She got it the first time by text immediately following my appt while I was waiting on paratransit. That first time I (we?) was (were?) immediately invalidated, and that's something you just don't do to me. It's one of, if not my biggest pet peeve, invalidating me, what I feel, what I experience, how I perceive things. If you want to talk trauma, this is my trauma. And this. This too (the first paragraph only) is all connected. Same person involved. These are the incidences that have led to panic attacks and nightmares.

I've thought about this continuously over the preceding 8hrs before starting to write this. Maybe I have experienced trauma. Fine. I give up. I'll tell you what you want to hear if it'll make you stop. Being brushed off for seven years, when I knew I needed more extensive and/or differently tailored psychiatric treatment caused trauma. This woman above caused trauma. Maybe the physical therapist who dismissed my pain (that was bad enough to make me cry) as me wanting to get out of therapy, when I actually had a post surgical complication caused trauma. She got fired FYI. Oh yeah, there was that 5th grade art teacher too (I needed a hell of a lot of psychotherapy to deal with him)... But it's not the forced therapy or sending me to the vice principal that caused trauma, it's the dismissiveness. If you can't see it, it's not there. NOT TRUE!

My friend, not wanting to listen to me, seems to want to think that having a physical disability, and everything that comes along with it, is deeply traumatic in and of itself. NOT TRUE EITHER! How do I explain this? It took me another 4hrs after my appt to come up with it.

Saying that experiences directly related to cerebral palsy -- PT, surgery etc -- are inherently traumatic is like saying experiences directly related to being black -- learning how to style black hair (which I hear is difficult), having someone cross the street when they see you coming their way on the sidewalk -- is traumatic. Now, I am clearly not black, so correct me if I'm wrong, but in relation to the CP stuff, my shrink and I said the same exact thing at the same time (that's a first for that)

These things weren't traumatic, they were MY NORMAL.

Having twice weekly physical therapy starting at 6mos old, needing to be taught how to roll over and sit up and walk up and down stairs wasn't traumatic, not unless you count having to go to hebrew school on Sunday mornings as "traumatic." Or having to do the dishes, or sitting through 10th grade geometry class as "traumatic." All kids have to do things they don't want to do. Heck, all adults have to do things they don't want to do. It's just the way life is. It's not "trauma." This is trauma.

And no, I am not diminishing my trauma. Hell, why would I do something that is my own pet peeve? Don't you do that to me. PLEASE!!! Would you tell a black person that the fact that they are black means that they experienced trauma? Would you tell a proud black person, who cherishes their identity and culture that they are denying their trauma? Then why do you continue to disbelieve me?

Baby It's Cold Outside

Back in Nov my therapist implied (over text message) that I have seasonal aspects to my mood. As in I get more depressed when it gets darker. Not something I thought about at all until last fall. Right about the time the clocks changed. Although I don't think you can conclude anything looking just at the last two years (which is what she did) because there was another stimulus that occurred both years that spurred these episodes, that is independent of darkness.

Then Friday the thought popped in my head that it's not so much the darkness for me as it is the temperature change and my sensitivity to it. I've been very depressed this past week, for a variety of reasons, and I realized it got worse when the temperature got below 40 degrees. So there probably is a direct seasonal connection independent of that other stimulus, but not for the typical reason she might be thinking. It's not SAD or any incarnation of it (I don't think).

If my idea of freedom is the wind blowing through my hair, you could basically say, in a sense, mother nature snatches my freedom away each winter. This coming Tuesday it's supposed to be 25 degrees (that's -4c), accuweather says. That's certainly not a day I'm going to the grocery store, not that I was planning on it.

The cold weather takes all the spontaneity out of my life. It calls for too much advance planning, too much relying on paratransit, added frustration, not just from paratransit, but from sidewalks and curb cuts that don't get shoveled and from streets that get plowed into the rare previously shoveled curb cuts. Even when it doesn't snow, I'd rather not be caught outside in any temperature under 50 degrees as cold causes pain. It's a CP thing.

It snowed Friday, for the first time this season. Not enough to stick to the roads, but enough to put a dusting on some bushes. I thought, here we go again... ARGH!!!!! I HATE COLD AND I HATE SNOW!!!!!!!!!! Please pray that my holiday party that is next weekend doesn't get canceled again this year. We can't possibly have a blizzard on the same exact day two years in a row, can we?

On Privlige Again

A few weeks back I had a micro-freak out. Nothing mentionable really, less then 5 minutes in my head, no where anywhere near having a panic attack. I needed groceries. In September a new store opened up about 2mi away, so the closer one, maybe 1mi away, a different chain that sells overpriced food of no better quality, closed in October. Forget about the fact that I have a Trader Joe's 3 blocks away and a 7-11 (for emergency milk & dish washer detergent) literally across the street. I waited all day, until it was dark and cold, to roll to the new grocery store.

It was after this that the almost imperceptible freak out occurred. What am I going to do when it snows? How am I going to get food this winter? People / the county just don't shovel sidewalks very well and it's too far to roll in the street. At least you could get to the old grocery store by cutting through the mall and you'd barely be outside at all. It's too cold for me to be outside that long in the winter. Cold hurts. Even in the daylight, in a few weeks it will be too cold. It's 20-25min each way. I don't want to take paratransit somewhere I could roll (absent snow). I don't want to pay a cab to get somewhere I could roll. What a waste of money and time and aggravation.

Then I stopped myself. I thought about all the grocery stores that I can roll to in 20-25min or less, including Trader Joe's (4). Of course I can't roll there in the snow, but I can take the bus (if the bus stop is cleared). Bus stops often aren't cleared in the county or the city. The bus stop right outside of my building is always cleared though. I can even take the bus easily to a 5th grocery store. Not just the bus, the QuickBus. I have a decent feeling that stop will be cleared, although I bet the curb cut to get to it will be dicey.

I can take paratransit even though it frustrates me. I can afford a cab. I can ask friends with cars to take me when they go, even though I don't want to. Two of the grocery stores deliver. I can order food online and it will show up at my door. I can afford the delivery charge, which I think is free for your first order. I won't starve. Why I momentarily though I would is ridiculous.

So then I thought about how lucky I am. Many people don't have that many grocery stores that close to where they live. Have you ever heard of food deserts? I'm not even talking about 3rd world countries -- just go into Baltimore city. The city hired a "food czar" to try to rectify that problem. We also have a problem with "hack cabs" something I'd never heard of until I googled Baltimore food desert. I'm lucky to have so many transportation options that are easy for me to access, even if paratransit is frustrating. It's not difficult for me to get food, and for that I am thankful.

And Another One

I missed this when it got sent to me and just found it doing an inbox search

Upcoming Webinar Series- Topic Guides on ADA Transportation

The Topic Guides on ADA Transportation were developed by the Disability Rights Education & Defense Fund (DREDF) (www.dredf.org) and TranSystems Corporation (www.transystems.com/).

The guides are available online at http://www.dredf.org/ADAtg/index.shtml.

Schedule: Second Tuesday of the month, beginning October 12, 2010 and ending April 12, 2011

Topics:

Equipment Maintenance (Topic Guide 1)

Stop Announcements and Route Identification (Topic Guide 2)

Eligibility for ADA Paratransit (Topic Guide 3)

Telephone Hold Time in ADA Paratransit (Topic Guide 4)

Origin to Destination Service in ADA Paratransit (Topic Guide 5)

On-Time Performance in ADA Paratransit (Topic Guide 6)

No-Shows in ADA Paratransit (Topic Guide 7)

Time: 2 pm to 3:30 pm Eastern Time (90 minutes)

Cost: Free

Presenter(s): Marilyn Golden, DREDF Policy Analyst and invited guests to be announced. (Bio sent under separate email)

Method of Delivery: Sessions will be presented via a fully accessible webinar platform. Instructions for connecting to the program will be provided to registrants in advance of the session.

Registration: Registration is available on-line at www.adaconferences.org

2010 Maryland Gubernatorial Candidates Disability Issues Forum Repost

Still plenty of time to book your paratransit ride!

Greetings from Maryland Disabilities Forum:

The Maryland Disabilities Forum is proud to announce that the 2010 Gubernatorial Candidates Forum on Disability Issues will be held on October 11, 2010 at the BWI Marriott Hotel from 2 p.m. to 4 p.m.

The leading 2010 Gubernatorial Candidates – Governor Martin O’Malley and former Governor Bob Ehrlich have both been invited to participate in the event. Candidates will be asked to address their respective platforms on disability issues, and will also take questions from the audience.

We are asking you as individuals with disabilities, family members and those who care for and about people with disabilities, advocates, community organizations, agencies, and businesses to circulate this notice to anyone who would be interested in attending the event. Attached to this email is a flyer that can be printed and posted, or sent via email with a live link to our website’s pre-registration page. The Gubernatorial Candidates Forum on Disability Issues is a free event, and though it is not required, pre-registration is preferable: http://www.mddforum.org/2010forumregistration.html.

Providing a platform for Marylanders with disabilities to hear from gubernatorial candidates about the policies that affect their lives serves to keep a growing voting population well informed and active in the political process. We encourage all interested parties to attend and to get actively involved in determining who will serve as Maryland’s next Governor.

Don’t forget to register to vote, follow our links below for Voter Registration and Voting Information:

Voter Applications must be postmarked by August 24, 2010 to vote in the Primary Election on September 14th.

Voter Applications must be postmarked by October 12, 2010 to vote in the General Election on November 2nd.

For Voter Application Form Visit: http://www.elections.state.md.us/voter_registration/application.html.

For More Information About Voting Visit: http://www.votesmart.org/voter_registration_resources.php?state_id=MD

A Therapeutic Riding Place Near Me

Someone in my class is currently interning at ROSES and somehow I got to this article (click to read it) from an office wide email at my internship and not from her. From what I've heard all summer ROSES is a GREAT place and I got pangs watching this video knowing that I cannot go riding because paratransit does not go there. Joan just sounds so AWESOME from what the intern says. She is so dedicated she doesn't even pay herself!

Quotes From Me

Last Wednesday I had 2 good ones. To set up the first one, I have a standing lunch every Wednesday with a friend of mine that used to come to OOO on Wednesdays but now has a Wednesday night class. I mentioned to her at least once before this that I should get off my butt and get something to drink so that I could take my meds. Then I say,

"I need to get up. I need to take them. I'm really starting to like being functional again."

To which some guy in the room I don't really know says

"What were you before?"

Um, non-functional. DUH! (I said it nicer)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Fast forward to the end of OOO when I was tired, my meds were wearing off, and I was having trouble centering my chair so that I could get it on the lift of the paratransit vehicle. In my head I went

Man, I'm such a... [pause while I think of the word] spaz

Which is hysterically funny to my twisted sense of humor, and not at all offensive (why would I offend myself?) because my official diagnosis is spastic triplegia cerebral palsy (or quadriplegia depending on who you ask), it's where the term comes from, and those of us with CP lose motor control when we're tired. Thus it follows logically that I should have trouble getting straight onto the lift. FYI, I decided some time ago that if the word was not going to be removed from the English language it might as well be used correctly, and I am, in fact, a spaz. Literally.

SNO-M-G

This is becoming a familiar phrase around Baltimore, as is snomageddon (as used by the governor), and snopocalypse. Baltimore has been stuck in a standstill as we've had three blizzards this winter: Dec 19, Feb 5, and Feb 1o. The grocery stores last week were crazy. I stopped into 3. I've been cooped up in my apartment all week as school was closed, my haircut was canceled, my therapy appt was canceled twice (she's been stuck in her house), 2 support groups were canceled (we're open today) and I even had a funeral canceled due to the snow. Both the public buses and thus paratransit have stopped running at times or have been running on modified schedules. I'm lucky there is a back way from my apt to Barnes and Noble, where I am now and where I went Tues, the only places I've been. I'm trying to save $ by getting rid of a gigantic vice and not having internet in my apt. I wasn't thinking about 2 blizzards in less then a week and not being able to get to school where there is internet. We've had over 80in of snow this winter, a record that beats all records, and are expecting more.

What does this mean? This means I've been going stir crazy bouncing between my bedroom and my friends' apt all week, occasionally the lobby, and am sick and tired of just wearing sweats. YIPPY! This past summer and fall (I'm not sure the exact dates) I did this for weeks on end and didn't care. I didn't want to do anything else and was quite content to hide away. I was pretty depressed and off my meds. It's AMAZING what 2.5 months of consistent meds can do. GET ME OUT OF HERE!!! At least OOO is open tonight! This also means I'm running out of things to write about :-( Being cooped up doesn't help the creative juices...

Here is a picture of a mountain of snow in the parking lot outside B&N:

I Meant to Write a Thankful Thursday Yesterday

[that's a picture of the MD state house to the left]

The day just got away from me. Wednesday was a GREAT day, the best I've had in a long time. Wednesday I went to Action Annapolis. I was bursting with so much greatness that I just have to share. I am thankful that

• I was able to get up and out in time to make my 6:45am paratransit ride.

• My 6:45am paratransit ride was on time, as was my 1:15 and my 5:03 was early! It is so hard for drivers to find anything in Annapolis... My 9:15 came @ 9:51, only 6mins outside the window. Not bad for 4 rides in a day!

• I told a friend I would either show up @ 8 or 10, nothing in between. I got there @ 8:05 for an 8:30 arrival time so I was actually EARLY to something in Annapolis on a Wendesday (their busiest day)!!!!!!!

• "Policy educating" always gives me such a rush and reminds me of my innate power to get things done; I'm totally pumped up for school on Monday!

• I also got a super cool button, my favorite of all 9 on my purse. 10 cents makes sense! That's in reference to the alcohol tax bill.

• I hang out with some of the coolest most passionate people now! If you can figure out who you are (there are quite a few) I <3 u

• I now have a mission when I go for the guardian voting bill hearing on Tues: bug the hell out of Mike Miller, the head of the senate, who has decided that there will be no tax increases in an election year. Not if I, or the army of supporters have anything to do with it.

• I was confidant enough to take the lead when talking to senators and I WON'T TAKE NO FOR AN ANSWER!

• People @ OOO seem to be able to understand me when I am so tired that I cannot even keep my head up. Getting up @ 5am is just not my thing and I took my meds so early they wore off not long after I got there.

• People @ OOO don't seem to be bugged that I frequently use my time for public policy "commercials."

I'm hoping that frequent trips to Annapolis and/or DC this year keep me jazzed, pumped up, and distracted enough to kick those losers at school in the ass! Depression sucks...