"I felt, um, kind of asexual"

As you know, I like horses. I like books about horses, like Colt, which has a crip main character, and movies about horses too. When I was a kid my favorite movie was Dark Horse -- several crip main characters and a crip horse. In Seabiscuit as well, both the horse, Seabiscuit, his rider Red, and another horse are all crips. In Dreamer, Sonador the horse, like the previous 2 movies mentioned, also gets in an accident. I can't remember if there is an accident that occurs in National Velvet. For me, books and movies about crips and horses always peak my interest. But I'm not so sure about this one...

I've written about targeted facebook ads before. This afternoon an ad popped up for the Hallmark made for TV movie After The Fall, about a girl who becomes a paraplegic after a fall during a jumping routine. You can see the 3min 45sec behind the scenes here. There are a few things that bother me from the behind the scenes. Notably the fact that if you become a full time wheelchair user you don't get such a crappy hospital-ly chair. Talk about pain. It seems to me that this is used to make this girl more pitiful-ly. The other thing is when they show the "knight in shining armour" lifting her into the truck. Way to promote pitiful crip... I mean, some wheelchair users really can't independently transfer, especially right after an accident, but I mean assisting with transfers... c'mon!

Then there's this clip above. This character seems to be the "mentor crip," the more experienced crip, the one who gets the cool chair and has confidence, who then promotes the stereotype that wheelchair users are asexual. I don't know about you, but I've never felt asexual even when I had low self-esteem. This message was never one that I got growing up, one of the things my mother did right. I got the message that other people would think I was asexual, but I have never felt asexual. Talking about being stared at and feeling like a freak because of it is a good thing, but to say that the second she popped into a chair in public she felt asexual, and to have this widely distributed on the internet is a public disservice and spreads such blatant ableist lies that I want it off the internet.

But that's just my humble oppinion...

First ADAPT Wordless Wednesday of This Action

Button says "There Ain't No Power Like The Power of ADAPT And The Power OF ADAPT Won't Stop SAY WHAT?"

The front of the line to the "funeral"

Another view of the casket

Diane dropping names into the casket

Our letter to Obama, unsigned. The secret Service refused to deliver it.

Our letter signed

In front of the White House Gate

Julie & Laura handcuffed to the gate in front of the Treasury

In front of Mayor Fenty's office

Sam from DOJ with the lovely Steve Gold. I ♡ Sam!

Pics from ADAPT, Julie, Scott, & maybe CDR

"SHAME ON YOU!" Edition of PINT

My Review of Sun & Mon at ADAPT

I'm feeling a bit blah, but promised myself I'd make 23 posts this month, as well as lacked some stuff from the last action, so I will push forward even if this turns out to be not my best work.

I feel like the ADAPT leadership dropped the ball Sunday. It wasn't like we were having some super secret action or anything. We were told to all wear black, but weren't told why. We didn't chant while marching towards Freedom Plaza, but weren't told why.

When we got there 50 people volunteered to be flag holders (most of them standing I think), including me, (can you spot me left? you can if you click on it, which'll make it bigger) and stood or sat while several people spoke about the abysmal state of community based attendant services in their state, and how 10s of thousands of disabled Americans are at risk of being institutionalized due to severe funding cuts. We also heard from several nursing home escapees, which, as someone who has never been institutionalized, is always very sobering to hear. It reminds me of how easily my friends or I could become stuck somewhere in an instant.

I didn't even realize until a friend mentioned, as we were tossing bits of paper into a coffin, with names of institutionalized people who were lost on them, that the whole event had been arranged to be a mock symbolic funeral. I didn't realize until I read something online Friday that the casket was carried all the way to Freedom Plaza at the front of the line and that we hadn't chanted because funerals are supposed to be somber. Neither did another friend of mine who had been there, until I told her. That is where the ball was dropped. It would have been nice if it had been clear.

Monday, I was impressed that my roomate knew where we were going before we even left the hotel. She said they only pass out the "jewelry" when we go to the White House. We were there to deliver a letter to Prez Obama -- that we all signed -- on the importance of long term care reform. I was not stationed in front of the White House gates, but in front of the Treasury, which is located next door. Very disappointing, but I have to remind myself that everyone has an important role.

The Secret Service would only let 25 people through because they said if there were more then that you have to have a permit. So the largest group blocked off both directions of an intersection just past the Treasury. I'm not sure what streets those are. Then, after awhile, we were told to keep the sidewalk clear (but they decided to use the street, which I think was wise, because of how many people there were). The tsunami was so quick, so exciting, that at the time it felt like it happened twice as fast as the video shows (you can see the giant letter in it). Is bum rush a real phrase? ADAPT bum rushed the White House and it was GREAT! SO EXHILARATING! JUST AWESOME! I don't need antidepressants, I just need ADAPT! THE HIGH! Who needs drugs? I sure don't. One of these days I'll be one of the ones handcuffed to the fence, and I can't wait! Although bum rushing would be cool also...

The Mayor's office visit was pretty tame, so you can just read the official press release, 2 posts below.

On Tuesday ADAPT went to HUD

We were there for 6ish hours shouting "Hey, hey, Shaun, Shaun! We can yell and scream til dawn!" I began to think we would be but after bumping it up and blocking cars in the parking garage at 3:30, we got what we wanted rather quickly-- a meeting with Secretary Donovan on October 15th. [the doors to HUD said "WELCOME TO HUD." Then one said "WELCOME TO ADAPT."]

Washington, DC---Building on momentum from a nonviolent civil disobedience action at the Obama White House yesterday, which resulted in the arrest of 16 people, 300 members of ADAPT today have stormed the headquarters of the Department of Housing and Urban Development (HUD). ADAPT, a national disability rights action group, is demanding that HUD and its Secretary, Shaun Donovan, be held accountable for resolving the dire housing crisis faced by low income people with disabilities and seniors.

“People have got to understand that for thousands of people with disabilities and seniors, freedom to live in the community means having both a place to live and community-based support services. They go hand in hand,” said Cassie James Holdsworth of Philadelphia ADAPT. “You have the civil right to be able to live in your own community, and not be stolen away and shipped off to a nursing home or institution.”

ADAPT plans to make several concrete proposals to HUD to improve its housing. Those proposals include increasing the number of accessible public housing units; reform of funding streams that would promote construction of integrated, not segregated, housing; define a “home” as not more than 4 unrelated people living together; increase public housing vouchers for people with disabilities who want to leave nursing homes; and perhaps most creatively, expand the definition of “homelessness” to include all people with disabilities and seniors with disabilities now in nursing facilities.

“The forced segregation of people with disabilities and seniors rests significantly on the failure of the federal government to adopt mechanisms to increase affordable, accessible, integrated housing,” said Bruce Darling of Rochester ADAPT. “HUD needs to be accountable for ‘disappearing’ our people and hiding us from the public by continuing its practice of programs that promote segregation.”

For thirty years, ADAPT has been recognized as an international role model in the struggle for disability rights, having helped to inspire nonviolent civil disobedience disability struggles as far away as Europe and South Korea. “Today, we literally have observers around the world watching us fight for social change,” said Rachel Siler of Chicago ADAPT. “Not only the White House but HUD should be part of that change with us.”

To learn more about ADAPT, see www.adapt.org. To follow ADAPT in real time during its actions in DC, go to http://twitter.com/NationalADAPT.

After the White House, ADAPT Went to DC City Hall on Monday

Washington, DC---300 members of ADAPT, the national disability rights organization, are at DC’s City Hall to hold the DC city government accountable for the type of Medicaid long term care services it uses for people with disabilities and seniors. In addition, the District holds a controversial contract with the Woods Services Institution, a residential facility in Langhorne, Pennsylvania which had its operating license revoked following the July 24th death of a resident who died after being left in a hot van.

“Mayor Adrian Fenty and City Hall are accountable for the quality of life of every DC resident, including low income people with disabilities on Medicaid who have been forced to move out of district to receive long term care services at institutions like Woods Services,” said Bobby Coward of Capital Area ADAPT. “Mayor Fenty needs to support bringing our people home, whether they are at Woods or at any nursing facility or institution.”

Under Fenty, the DC city government has embarked on a policy direction to reduce personal care services within the Medicaid State Plan. ADAPT wants DC city government to instead fully fund services which support people with disabilities living independently in the community and prevent unnecessary and illegal institutionalization.

Capital Area ADAPT is asking Fenty and his successor to implement an Olmstead Plan for the District which includes 1) phasing out JB Johnson Nursing Center a 230-bed nursing facility owned by the District, 2) provide community choice in long term care, 3) implementing an aggressive effort by the District’s Aging and Disability Resource Center aimed at identifying and support nursing facility residents who want to live in the community, and 4) effectively addressing the need for affordable, accessible integrated housing.

To learn more about ADAPT, please visit www.adapt.org

ADAPT Took State Medicaid Budget Cuts Fight to the White House on Monday

Washington, DC---300 members of ADAPT, the national disability rights grassroots organization, are at the White House, demanding that the Obama administration exercise concrete leadership in his commitment to expand and support community-based long term care services for people with disabilities and seniors on Medicaid. ADAPT is demanding that Valerie Jarrett, Senior Advisor to the President, and Melody Barnes, Assistant to the President for Domestic Policy publicly address the ADAPT members assembled in front of the White House to answer specific proposals ADAPT is offering to work with the Administration.

“I want to know that the White House is actively working with consumers of community-based long term care services to create federal expansion of consumer controlled and non-medical model long term services and supports,” said Randy Alexander of ADAPT of Tennessee. “States should be accountable for saving money by directing Medicaid funds towards cost-saving community supports rather than costly institutionalization. In this fiscal crisis, that is the right thing to do.”

President Obama created the bipartisan National Commission on Fiscal Responsibility and Reform to address our nation's fiscal challenges. The Commission is charged with identifying policies to improve the fiscal situation in the medium term and to achieve fiscal sustainability over the long run.

“It is vital that the Commission evaluate the fiscal unsustainability of the Medicaid institutional bias by hearing testimony from people with disabilities who personally use community-based long term care services and have been victimized by or are at risk of having their community based service hours cut,” said Bruce Darling of Rochester ADAPT. “ADAPT has both grassroots and policy experience to offer the Commission to create a truly sustainable fiscal future for state long term care services.”

For more information about ADAPT, visit www.adapt.org and http://twitter.com/NationalADAPT

What If...

By National ADAPT from the Defending Our Freedom blog

• What if your landlord decided if you could go out...and when, where and with whom?
• What if someone made it their business to decide that you could not have anyone spend the night, and even though you were 43 years old?
• What if you could only have alcohol on special occasions, and only if you were "good"?
• What if there were no guarantee you and your spouse, let alone a friend, could live together?
• What if your entire living space was 10 by 12 feet and you had to share it with a roommate your landlord picked for you?
• What if they sedated you because you were "uncooperative"?
• And that said it was all "for your own good"?

That's life in a nursing home or institution.

What if you could have a REAL CHOICE?

That's what the Community Choice Act (CCA) would do. ADAPT is fighting to give people the opportunity to decide where they live and receive long term services and supports. People could choose to stay in their own homes rather than be forced into nursing homes or institutions.

A Disabled Manifesto

I thought this would be appropriate to post on the first day of the latest national action. ENJOY! Photo is from the Fall 2008 DUH CITY action and is copyright ADAPT. It doesn't have much to do with the post other then I haven't found a reason to post it yet & I liken the kids in the DUH CITY jail to us crips being imprisoned in TAB imposed limitations.

A DISABLED MANIFESTO

By John R. Woodward, M.S.W. Center for Independent Living of North Florida, Inc

We proclaim that we are born free and equal human beings; that our disabilities are limitations only, and that our identity does not derive from being disabled.

We proclaim that we have the same value as people who are not disabled, and we reject any scheme of labeling or classifying us that encourages people to think of us as having diminished value.

We reject the idea that institutions must be created to"care" for us, and proclaim that these institutions have been used to "manage" us in ways that non-disabled people are not expected to accept. We particularly denounce institutions whose purpose is to punish us for being disabled, or to confine us for the convenience of others.

We reject the notion that we need "experts," to tell ushow to live, especially experts from the able-bodied world. We are not diagnoses in need of a cure or cases to be closed. We are human, with human dreams and ambitions.

We deny that images of disability are appropriatemetaphors for incompetence, stupidity, ugliness or weakness.

We are aware that as people with disabilities, we have been considered objects of charity and we have been considered commodities. We are neither. We reject charitable enterprises that exploit our lifestyle to titillate others, and which propose to establish the rules by which we must live without our participation. We also reject businesses that use us as "warm bodies" to provide a passive market for their services, again laying down rules by which we must live for their profit. We recognize that the lines between charities and businesses are blurred in the disability industry, and we do not accept services from either if their essential function is to exploit us.

We assert our rights of self-determination in the face ofrules, eligibility criteria, regulations, customs, laws or other barriers, and we pledge not to allow any authority or institution to deprive us of our freedom of choice.

Finally, we assert that any service we need, from specialized teaching to personal care, can be provided to us in the community among our non-disabled peers. Segregated institutions are not necessary to serve us, and they have been the greatest source of our oppression, especially when they have been run by able-bodied people without our participation.

All human beings are more alike than we are different. We recognize that when we assert this belief we will find ourselves in conflict with regressive institutions and their supporters, some of whom may be disabled themselves. We do not expect thousands of years of stereotyping to dissipate quickly. We commit ourselves and those who come after us to challenge our oppression on every level until we are allowed to be fully human and assert our individuality ahead of our disability.

ADAPT Activists to Storm, Washington, DC

For immediate release

Contact:

Cheryl Gottlieb (Maryland ADAPT), (301) 758-4473

www.adapt.org

ADAPT activists to Storm Washington DC; Vow to Fight State Cuts to Medicaid Home Services

Fighting dangerous state Medicaid budget cuts across the country, the national grassroots disability rights action group ADAPT is planning direct actions at several venues in Washington, DC between September 19 to 22 to demand that states save Medicaid-funded home and community based services. These services support low income people with disabilities and who are aging to stay in their own homes instead of being forced into nursing facilities to obtain services. During this critical election season, ADAPT plans to make it clear that saving Medicaid services is key to winning the disability vote.

"During this time of fiscal panic, governors are looking for ways to save dollars," notes William Fields, a Baltimore City Resident. "Hundreds of us are coming to Washington because Congress and the White House need to step up efforts to protect Medicaid community services in the states. I use home services and without someone to assist me, I'd be waiting on some nursing home aide to change me or feed me whenever she was done with the other fifty people living in the same facility. With home services, I am in charge of my life."

Current Medicaid law mandates that states use their Medicaid programs to pay for nursing homes, but the law does not equally mandate that states pay for the same services in a person's own home. Today, most states recognize that providing home and community based services (HCBS) is a less expensive solution than institutions. However, in these tight fiscal times, Medicaid dollars funding "optional" services like HCBS are first on the budget chopping block, while the mandatory institutional budgets are rarely touched. ADAPT's current "Defending Our Freedom" campaign is a direct response to states' attacks against HCBS, services that allow people with disabilities to take care of themselves, raise their families and be part of society.

"Without the home services funded by Medicaid, hundreds, if not thousands, of people with disabilities in my state would be forced to live in nursing homes or institutions," said Joe Stramondo of Michigan ADAPT. "Some states are virtually on the edge of bankruptcy. It makes no sense to spend extra dollars on institutions when those same dollars could fund more people with disabilities to live in the communities of our choice."

To learn more about Defending Our Freedom, please visit http://www.adapt.org/adapt-campaign.php

Wordless Wednesday ADAPT Preview

This is Bryan from Rochester last April (and Mike Ervin from Chicago creepin' in the background). Doesn't Bryan have the coolest hair EVER?

PINT

Let's Talk About SEX Baby! A Repost

This was originally posted 2.5 years ago on January 6th, 2008 and was only my 11th post to this blog way back when it was hosted on Disaboom. It's so old that it took me forever to find, as I could not remember when in 2008 it was from and could not figure out which tag to click. So I'm sure no one has read it. It is on a topic I have subsequently discussed several times, the most recent of which frequently appears through my linky tool. I'm guessing that one was popular. I'm bringing this back in its unaltered original form because the sentiment at the end of the post came up in conversation with a friend recently and I thought I would pull it up for reference. ENJOY!

Like any normal, healthy, well adjusted 22 year old I spend a fair amount of time thinking about sex and talking about sex with my friends. Frankly, I would be worried if I wasn't. This past July I got an IM from this guy I used to know. I went to camp with him for 1 summer and the last time I've spoken to him was at my 16th birthday party. I don't think that he knows I have CP, but I'm willing to bet he's spent some time in my wheelchair. My wheelchair was at camp for the purpose of off camp field trips, but other then that it had a nice home behind the rock climbing wall. For the first few weeks of camp no one knew it was there, but one day I finally needed it and for some reason everyone immediately thought it was the coolest thing in the world. Most nights people would take it out from behind the rock climbing wall and take rides in it. Most of the 10th and 11th graders as well as our associated staff that summer took multiple rides in my chair.

So the guy IMs me and very quickly into the conversation says "I don't mean to sound rude or f*cked up or anything, but can you have sex?" To which I replied "You're not rude, yes I can have sex, but I choose not to." My friends were more outraged about it then I was. The way I feel, if people have questions I'd rather they just be upfront and ask.

I've never doubted that I could have sex. I have the same parts "down there" as everyone else. They look the same as everyone else's and they work the same as everyone else's. Mostly I just wondered about who I was going to have sex with. I'm not the kind of person who is going to go out and have sex for the sake of having sex. #1 getting an STI is not my idea of fun and #2 I want it to mean something. In order for sex to mean something that means that I'd have to be in a relationship with someone. But who would want to be in a relationship with me? I can't drive so every time we went on a date he'd have to pick me up. And if we ever went on the kind of date where I needed my wheelchair, he'd have to put it in the trunk for me. I can't lift it. He'd have to do everything, and who'd want to do that? Now of course that's not true. I'm not completely helpless, but it sure felt like it.

Then my thoughts focused on the practicality of having sex. I have inconvenient spasticity issues. The tightest muscles in my entire body are my inner thigh muscles. So the only thing I could think of was how painful sex would be for me. But I just decided I wasn't planning to have sex any time soon (back to that boyfriend issue) so I would cross that bridge when I came to it.

For Chanukah I got a $30 gift card to borders from my mom's cousin. I was waiting for that to get 2 books that I've really wanted. The first was The Rider's Fitness Program and the second was The Ultimate Guide to Sex and Disability, which was FINALLY rereleased a little over a month ago. They came in the mail from Amazon on Friday. I've read a few chapters of The Ultimate Guide to Sex and honestly, the book hasn't told me anything about sex that I haven't already heard. I took Sexuality in a Diverse Society. I didn't have a choice, unless I don't want to graduate. But The Ultimate Guide to Sex does have one very important thing in it that my sex class textbook doesn't have--real stories about real people with disabilities who have real sex lives. I don't have the book with me, but I believe my sex class textbook has two paragraphs about CP in the chapter that talks about disorders that lead to sexual dysfunction. How's that for an ego boost? The Ultimate Guide to Sex talks about people with disabilities who have lesbian sex, who have threesomes, I could go on, but you get the idea. And the authors didn't just interview one person for the book, they interviewed a lot of people. Defiantly a confidence booster. If people wanted to have sex with all these people then someone's bound to want to have sex with me eventually.

Usually when I go somewhere where there are lots of cute single Jewish college boys I find a chair against the wall or something and hope that no one looks at me or talks to me (other then the people I went with of course). Maybe next time I'll actually talk to someone. Not that I've really done much the last 3 days, unless grocery shopping counts as something that is, but I've been feeling very sexy. In reality I'm not as bad of a catch as I've spent years thinking that I am. I'm smart, I work out frequently, I know where I want to be in my life (even if I'm far from there right now), I've been told that I'm witty, and as I've recently started dressing better and putting on makeup more often, I've decided I'm really good looking. So I have a waddle. It probably attracts attention to my butt. That could work for me...

It's Voting Season

Candidate Endorsers

I'm posting this just in time as the Maryland primary is Tuesday. The Lorraine Sheehan Health & Community Services act is something very close to my heart. I have a friend who comes across as a single issue voter, but states proudly that she is not. She states that yes, she is a pro-disability voter, but she is also pro-poor people, pro-healthcare, etc. It just so happens that the boundaries between these issues often blur. She, as am I, is a pro-disenfranchised, look out for the underdog voter. This bill captures all of that.

I have written about the act before. In short, Maryland has 2 different alcohol taxes that haven't been raised since 1955 & 1972 respectively. A 10 cent increase would raise $214 million in funds that will be used for direct support for individuals with developmental disabilities, substance abuse treatment, & expanding medicaid eligibility. This has been a multi-year battle, & if you're in Maryland I hope you'll vote pro-alcohol tax this tuesday. I know I won't be voting for 2 of my incumbents...

Pain

I just found out the other day that this past Wednesday through today a multidisciplinary pain management conference was held in Las Vegas. Why it's called Pain Week when it's only 4 days I don't know. That's half of a week.

PAINWeek is the only national pain conference that has been developed to meet the educational needs of physicians, nursing professionals, physician assistants, dentists, pharmacists, psychologists, and podiatrists.

PAINWeek offers a diverse curriculum and multidisciplinary faculty who will present courses in the following areas: addiction, complementary & alternative medicine, geriatrics, health coaching, hypnosis, medical/legal, narcoterrorism, neurology, pain & chemical dependency, palliative care, pediatrics, pharmacology, physical medicine & rehabilitation, primary care, regional pain syndromes, and rheumatology.

So I thought I'd write a little about PAIN--something nobody likes.

One of the popular questions about CP that gets asked to me (whether in a formal awareness setting or not) is if it is something that hurts. Good question. My standard answer is "not unless I do something stupid" accompanied by a laugh on my part and a confused look on the part of others. I then go on to explain how I should not do things such as walk around with a heavy backpack or purse or blog while I'm in bed (guilty right now). But the truth is that CP does hurt. More days then not (like right now, um, blogging in bed, yeah...) I experience minor pain for at least a few minutes. It's so minor that I don't even notice it anymore. I get up out of bed in pain most days but by the time I am dressed it is gone. I just need to move a bit is all.

Most days (like right now, ahem, blogging in bed) my pain level is at a 1, not like after surgery, like after I had every bone in both my legs broken at the same time and my pain level might have been at a 15 had I not been kept completely numb from the waist down (epidurals ROCK!), or when I was at the apex of my anxiety issues and I would wake up in tears with a pain level of maybe a 12 (baclofen & botox helped the pain lesson some but not the intensity of the pulsing spasms).

When I was in high school I walked around with a heavy backpack all the time and thus had significant pain all the time. Unlike now, where it takes 14mos or more to go through a bottle of 30 2mg tabs of valium, it used to be standard for me to ask for a refill every 4-6mos (no wonder I was depressed). But even then I would have told someone "not unless I do something stupid" like let my backpack fill up with crap.

Before it was my back it was my right leg that used to hurt, although not all the time and not every day. When I was a kid we kept an industrial sized prescription bottle of children's liquid advil in the house (that was before it was OTC) because I could tolerate the taste and refused to take tylenol due to its taste. However, I'm not sure if I would have flat out told someone that CP hurts. Maybe I would have said "just sometimes."

When I went for botox 2 weeks ago they take your blood pressure and what not and it seems like a new standard question is "do you have any pain?" I laughed in my head the same as when I went for a follow up with my orthopedist a few years ago and the nurse asked me if I'd had any falls. "Nothing more then the usual," I answered this time. "I've been on my laptop in bed." [it puts my neck in not the best position] But seriously, I was there for botox, a pain procedure; of course I had to have been having some pain somewhere or I wouldn't have been there.

If to me pain is as synonymous with CP as falling is (it seems like falling goes with the kiddies and us old folk get the pain, but at least my frequent falling has stopped) why am I then so reluctant to admit to TABs that YES it DOES hurt (if even just a little)? This is not something I have thought about before. I gather I don't want people to associate CP as something negative, something fearful, something that makes my life bad, because it isn't. The truth of the matter is now that I'm out of high school and I don't have to carry around heavy backpacks ever again, pain isn't something I think about all that much.

Today Is World Suicide Prevention Day

I signed up to write over at BloggersUnite (that's the page for the swarm) and then decided that what I want to write about is best suited for Mental Illness Awareness Week next month.

Today is World Suicide Prevention Day sponsored by the world health organization and the International Association for Suicide Prevention. On the event description page the UN states that

On average, almost 3000 people commit suicide daily. For every person who completes a suicide, 20 or more may attempt to end their lives.

I think that it is nice to have a worldwide statistic for once as opposed to just a US statistic as suicide is a global issue. I wonder, the same as everyone knows at least one person with a diabetes and/or cancer diagnosis if everyone also knows at least one person who has attempted / committed suicide. I wouldn't be surprised, although I think my view is skewed based upon the fact that I met the largest chunk of my current friends through a DBSA affiliated support group. I know someone who committed suicide, as do all the people who have been coming to this group since before 2010.

It's unfortunate that this death has had the level of impact it has on me. My life has changed for the better this year, as evidenced by yesterday's post, and this is due in part to how the suicide affected me and those around me. I'd rather the person still be alive of course, as I imagine they would be a huge source of support for me, and I could have been for them had they let me in.

Let me tell you this:

No matter how alone you feel you are in this world, no matter how much you feel like things won't get better, they can and they will. There ARE people who will miss you. If this person had known the impact they had on everyone around them I'm 125% certain they wouldn't have done it. People don't often tell others what their positive impacts are, and that's unfortunate, as I'm sure just this act would reduce suicide rates drastically.

If your support system is dismal, I suggest you click on the link above and see if there is a DBSA affiliated group in your area. It could be a life saver.

VICTORY!!!

I thought briefly of not posting this account, because actually, thinking about this now the people in question could be reading this. Although doubtful, I do know they have read before. However, I am bursting with pride and that outweighs my reservation. That and I think I can be vague enough not to identify them on the internet.

I have irrational anxiety issues that have grown slowly over the years to the point where the impact reached its peak 2 years ago. My panic attacks manifest themselves in severe pain (CP + panic sucks) and this has resulted in me desperately trying various benzodiazepines, sleeping pills, SSRIs, OTC meds, all having nasty side effects of extreme drowsyness and/or suicidality and/or nightmares. I settled on some low dose baclofen and a significant increase in botox, which I think I no longer need but am afraid to give up.

My panic sets in when confronted with people. People who may or may not in reality have any issue with me, but whom I imagine have major issue with me. People in authority. People in authority are intimidating and scary to many people, but I tended to take it to the extreme, having nightmares and panic attacks about them in my sleep and avoiding them at all costs, even if it was to my extreme detriment. One of my worst ever panic attacks (it's in the top 4) occurred when I was in the same room with someone who had no interaction with me. There were 100+ people in the room and she was on the other side.

I have really noticed a decrease in my anxiety during 2010, to the point where I really almost did decline 3 of my 8 botox shots last week. I'm "fine"; I haven't had a panic attack since late April (YAY!!!). My thoughts are still there, I haven't become magically freed of my issues with authority figures, but this fear no longer rules my life.

Tuesday I attended a meeting specifically because I expected 1 of 2 people would be there, both of whom are guaranteed to increase my anxiety. This time my anxieties are based somewhat in reality, however at this point I could choose to have no interaction with either of them without consequence. I attended though because their opinion of me (I'm not inside their heads, who knows what they think) doesn't matter anymore (it um, actually mattered quite a bit not all that long ago). They will have no impact on my life; they will not keep me from doing what I want to do.

A few days before the meeting a friend said "You know so-and-so will be there..." I did. I gave that less then 30secs of thought prior to her mentioning, and had decided that was the very best reason to go. To prove to myself that this person doesn't matter.

How did it go you ask? Well due to the fact that the bus didn't show and I had to take the next bus, I arrived 15mins late to the meeting in a packed room which could have easily contained 3 dozen people. This positioned me almost as far as I could possibly be from both people (they both showed up), which was good, because although I could see them they weren't in my direct eye line, and say the only spot was sitting next to them (every spot at the table was taken thank god and I was positioned with the row of chairs behind the table) it would have been asking too much.

They were however right in front of the food table and I was able to get up 3 times, standing right behind them. My anxiety level was slightly increased the entire time I was there, however it stayed level and did not increase as my proximity changed. That's MAJOR. The food was too good and I was too hungry to give much of a crap about what they thought of me. I was able to pay attention to the meeting and absorb everything the leader was saying, as my thoughts about what they think of me, while present, were not all consuming. Another MAJOR feat.

Thankfully I didn't have to speak to either of them. One left early and I was able to position myself out of harms way (for lack of a better term) at the end of the meeting so I didn't have to say so much as a "hi" to the other one on the way out, without it being obvious. One of these months I will work up to that. Small talk (with anyone, not just authority figures) is something at the top of my list of things to work on...

[ok, so I don't like family guy, but the picture is fitting]

Wordless Wednesday

Notice a theme in my posts these last 3 days? These three photos, although taken almost 2.5 years ago, are probably the most recent photos of me with a horse. I found them on my mother's camera after our vacation. The horse's name is Cadance, and yes, I know my helmet is too big.

PINT

The main PINT page has some GREAT quotes about friends today!

It's Labor Day Here in the US...

a day set aside to commemorate the American worker. It of course is just assumed that we are commemorating human workers, but it's not only humans who put in long hrs working. I thought I'd put up something short and sweet commemorating service dogs. If you haven't noticed, I have 2 new blogs on my blog roll which pertain to service dogs, Doodle at Your Service, which chronicles the life of Bailey, a SD in training, and Dog in a Dorm: Life with Holden at Mount Holyoke College.

Dogs don't have to be putting in laborious hours to be considered working. Sometimes loving can be just as beneficial as opening a door. That's where therapy dogs come in. I ♡ therapy dogs! The image above left was found last week by simply google imaging the word therapy while trying to find an image for Friday's post. This lead to a brief article on therapy dogs in hospitals, something I am very fond of. Here is a new video (if you missed it, the first one I posted is here) that highlights the impact that dogs can have in hospitals. enjoy!

What if You Never End Therapy?

[it's been awhile since I posted a Savage Chickens cartoon]

Therese recently posted about therapy termination, and as this is something I often think about, I thought I'd offer my own opinion. My opinion is that I never plan on ending therapy. I expressed this to a friend once some time ago who responded somewhat surprised. However, s/he doesn't have a chronic issue, and I also hadn't known this person all that long at the time. My opinion is that it's easy to terminate therapy when you're going through a transition -- divorce, career change, etc-- you can resolve those things, but how do you resolve altered brain chemistry?

At the time I had this conversation I was doing things such as calling my therapist 6 times in a 4 day period and sending her 20+ emails in a week. That was before OOO and a particular friend who has really gotten inside my head. I knew things weren't always going to be like they were at that time (they aren't, things are much better). I even felt -- and still feel -- like eventually I can get to the point where maybe I'm only checking in with my therapist once a month (of course with the occasional email & text message thrown in in between... I'm human and it's the 21st century). I just don't feel like there will ever be a point where I will be able to sever ties completely, nor do I think this will ever be appropriate or safe.

I have friends who have been seeing the same therapist 15, 20+ years (weekly I bet) and I don't think there is anything wrong with this (not that this is what the friend above was saying). If that's what you need, that's what you need. I think that a society that equates self-sufficiency with complete independence is really doing most of the population a huge disservice. Humans are herd animals, we need people, and for some people that need includes, and will always include, a therapist. Nor do I think this is what Therese was saying, that you should ditch your therapist. She was saying the opposite.

I just wanted to say this because I think it needs to be said. My therapist often tells me not to compare myself to other people, which is like impossible being that, as I said, I'm human. Reading Therese's post might have lead me to do that. She posted recommendations by experts that "...it seems logical to stop once you feel better, have resolved your major issues, and feel like your life and relationships have improved."

What if you never do feel "better"?

Says you: Didn't you just say you feel better?

Says me: I DID!!! And I DO! But my life can't "improve" you see. Although it has improved a great deal thanks to friends who get in my head, I will always have cerebral palsy and I will always be bipolar and be on medication and use wheelchairs etc, and so the things that initally lead me to therapy at the young age of 5 won't ever go away. They won't ever be "resolved" because not only can't they be resolved, I don't want or need them to be. Does that make me less of a person then someone going through a divorce who terminates therapy after 6mos? OF COURSE NOT! Yet somehow I can see someone interpreting that statement this way and so in my head I went

wait.... that isn't right.... that's bull and I hope no one actually thinks that. So I've been in therapy over half my life. So what? It's working this time and why would anyone end a good thing just because they think they're not as good as someone else? I hope they wouldn't...

Quote From the Drs Office

The other day I went for a botox appt, and you have to sit there forever. You get seen 1st and then it could easily take an hr for the botox to appear from the pharmacy downstairs. What gives? So of course the Dr goes off and sees someone else while you sit there and find people to text, or just stare at the wall, or whatever. This time he saw a little boy who rather obviously also has CP. I know this because it is standard procedure for a physiatrist to ask you to walk down the hall several times, first with shoes/assistive devices, then without, and my door was open.

It was after his last time, as he was walking back into his exam room that the boy turned to the Dr (out of my view) and said

"Dr N, why do you make me walk on the floor if it's dirty?"

I chuckled to myself. That's nothing I'd ever be concerned with. That, and well, there's dark carpet in the hall. You can't tell.

Wordless Wednesday

I've been meaning to get this up--it's too bad you can't read my shirt. This is me and part of the anchor of the USS Arizona at Pearl Harbor. I'm wearing my Defending Our Freedom shirt from this past spring's national action. GET IT???