You Get Proud by Practicing

by Laura Hershey
RIP

If you are not proud
For who you are, for what you say, for how you look;
If every time you stop
To think of yourself, you do not see yourself glowing
With golden light; do not, therefore, give up on yourself.
You can get proud.

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

There are many many ways to get proud.
You can try riding a horse, or skiing on one leg,
Or playing guitar,
And do well or not so well,
And be glad you tried
Either way.
You can show
Something you’ve made
To someone you respect
And be happy with it no matter
What they say.
You can say
What you think, though you know
Other people do not think the same way, and you can
keep saying it, even if they tell you
You are crazy.

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

Power makes you proud, and power
Comes in many fine forms
Supple and rich as butterfly wings.
It is music
when you practice opening your mouth
And liking what you hear
Because it is the sound of your own
True voice.

It is sunlight
When you practice seeing
Strength and beauty in everyone,
Including yourself.
It is dance
when you practice knowing
That what you do
And the way you do it
Is the right way for you
And cannot be called wrong.
All these hold
More power than weapons or money
Or lies.
All these practices bring power, and power
Makes you proud.
You get proud
By practicing.

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

Aimee Mullins ON DISABILITY

IT'S EVEN CAPTIONED! Found through the blog Born Just Right, and then a few days later on Ryn Tales Book of Days, and then Terrible Palsy. It seems to be floating around mommy bloggers lately. I have no comments, this needs none; it should speak for itself.

Everyone CHECK YOUR FILES!!!

I don't mean computer files, I mean check the info said professionals keep on you. Check them yearly like you're supposed to check your credit score.

[image description below: 3 file folders. When I searched for them I found a flash drive shaped like a file folder. How cool!]

I received my admissions letter to transfer from a 2-year to a 4-year school in November of 2005. November 4th to be exact (I remember because we were supposed to move that day). I registered with disability support services at my new school in November of 2005. I gave them just 2 pieces of paper as documentation, a copy of my current memo with the accommodations I had at the school I was attending, and a letter from my physiatrist, not even one page long, attesting to the fact that I had a diagnosis of cerebral palsy. And all was right in the world.

When I was finally formally given the correct psychiatric diagnosis, which took a bit of time between October and December of 2007, I did not do that. I verbally told people (professors, DSS staff, whomever) what I was dealing with and probably sent them an email or 2. I did nothing more as I was not asked to do anything more and did not think it was necessary. Nobody was questioning me. That was a mistake.

It is now 2010, 25 months after the fact, and it is a big mess. After having a small feeling that I needed to update my accommodations spring semester 08, I finally realized fall 08 that this need was desperate. I've had to jump through hoops. It only took 9 months of continually being denied an accommodation I have every right to receive to even find out that they would not do anything at all because actually they had no proof that I have this diagnosis. No documentation in the file. Good grief! Said documentation was faxed in about 2 weeks later I would say. That was this past June finally. No just handing them a piece of paper, "Cheryl has been diagnosed with bipolar II disorder as of such and such date and it affects her in this way. Please call with any further questions." That's basically how the first one went, but it's just not good enough this time. They had a 3 or 4 page form.

I did not go to school this past fall semester. I just didn't have it in me to keep up the fight. So we skip to the first week of December when I went back in there on an information quest. I needed to decide if I was going to give this school thing one more try. I was told that they still could not modify my now 4 year old accommodation memo because the documentation submitted in June was incomplete. GAAAAHHHHH!!!!!!! Does it have to take SIX MONTHS to tell me this? Later that afternoon I sent an email requesting an email back with my latest memo attached. I needed it to reference in order to be able to complete what they were asking. I never got it.

Finally I decided I'd had enough of this. I remembered back a year ago when I needed very specific documentation in some other completely separate matter and had to get it from my vocational rehabilitation case manager. That documentation ended up coming in the form of a confidential interoffice memo pertaining to my neuropsyc testing results from 2005 that I was never supposed to see. This memo would have been incredibly helpful to have seen in 2005, as I have been classified in all of their documentation since that date as having a mood disorder (not specified) and I had no idea! Remember, my bipolar disorder diagnosis came in 2007, and I had gone all that time thinking I had a much milder diagnosis then their stuff said.

My point about this being that I realized if I wanted a copy of 1 sheet of paper I was going to have to physically go there and get it, and as by this time I was getting such a convoluted run around, if I was going to go through that effort I might as well request access to my entire file and check out what they had on me. A lot of it was crap. There was once an elevator outage in a building I had class in and I had emailed to find out how long the repairs would take. That was printed and filed. However, I did find interesting stuff as I suspected and ended up coming for 1 sheet and leaving with 9.

Now this is the really important part. I've had a concern since the summer of 2006 or so. Something school related but not at school. It took me a LONG TIME to finally verbalize my concerns as I wanted to believe they were all fabricated in my head. It took about a year and a half or so. I verbalized them after someone at school approached me about a situation more directly related to school. They said it "didn't go well." When I asked what "didn't go well" meant they said they didn't know. I pressed on and off over 8 months and finally gave up with them as a lost cause, even though I just knew they were hiding something. People not at school but related to this were equally or almost equally as vague. A year later I got the guts to pursue this with someone else not associated with school and she told me stuff I already knew, but I also had this feeling that she was being evasive and hiding something. I cried after that phone call.

You know what I found in my file? A typed note with details from a phone call between my then DSS case worker and my then academic adviser from March of 08 that flat out said what "didn't go well." Guess what it was? The stuff I already knew and nothing more! So why has this been hidden from me for a span of over 2 years?

This lack of information has contributed to exacerbating depressive states twice over this 2 year time span (fall 07-winter 09). When I don't have all the facts I tend to fill in the gaps with things I invent in my head. I think all people do this. I however insert the worst. Because they had not been straight with me I assumed something much worse had occurred in addition to what I knew. Something so bad it was too awful to tell me. Nope. But all this time I had assumed that I had some sort of horrible defect, that maybe I had done irreparable damage to another human being or something along those lines. They (both the school and not school people) totally wrecked my self-concept. Made me feel hopeless. How would you feel if you thought you did something so horrible no one would tell you?

Instead they identified a defect (for lack of a better word) that I had self-identified a long time ago and had finally decided to actively work on about 6 weeks before the whole thing went down (in the interest of full disclosure, I was in a manic state so I had the guts to go for it finally). They'll never know this because I was only able to work on this issue for about 4 weeks before entering into the worst depressive state I've ever been in in my life. Because they weren't straight with me I never had the courage to pick myself up and try again. I just gave up entirely, even though this was something I had been wholely invested in improving.

Because they weren't straight with me they may have done irreparable damage to me.

So everyone check your files! You never know what's in there that you should have known 3 years ago.

"I'm Not Embarassed for Who I am..."

I found this video on Terrible Palsy. I had yet to change the URL on my blogroll and was behind reading posts there. I'm glad I finally caught up.

Walk On -- 900 Miles



I'm going to keep my comments about DJ's goal to myself. I get it. I get where he's at. I was there before. I've had similar goals in fact...

The part that gets me, the part that chokes me up, is at about where there are 3mins 45secs left. "If I see myself on television I'll actually look the other way. I won't watch it... All I can say is it's just hard sometimes. It's just hard."

I'm not embarassed for who I am either, but yes, yes it is hard. Writing this I almost want to cry. I'm a bit emotional about something else at the moment and it seems to be putting me over the edge. I've never liked seeing myself on video. It's been a few years though. Maybe next time it won't be so bad.

When I'm not looking at me, when I am me (does that make sense?) I am normal. I am my normal. However, when I'm watching me I am not me, I am outside of me, and the me I am watching is not normal. She is abnormal. The me I am watching looks awkward and unsteady. The me I am does not feel that way. When I was younger if the me I was watching would have been anywhere near the me that I am, I would have gone the other way. It is easy to understand why the me I am watching gets judged by others. I can see how it is so easy to put me into the group that is "them." When I am watching me I almost want to forgive the ableism. After all, they don't know any better.

It's not like I would ever not do something because of the chance I might get on TV. In fact now it's quite the oppisite. I'm an ADAPTer; it's all about breaking down barriers. I think DJ gets that too. He's very well spoken and articulate. Looks can be deceiving. Don't judge a crip by their chair. Or their waddle & cane... We're neither normal nor abnormal. We just are. People are people. I think that's part of his point.

As an aside, why in the world did DJ keep track of his falls on his blog? Anyone else think that's odd?

I'm Thankful

Well, it isn't thursday, but I'll be too busy to post on "thankful thursday." Some people wonder why my blog posts are so personal, so raw, why I'd open up my heart to perfect strangers. This blog is sort of cathartic for me. It allows me to sort out all of the feelings in my head without feeling judged. There is a reason that I host this blog on Disaboom as opposed to somewhere else. There's a niche audience here, who often think and feel as I do. I've learned through becoming an active participant within the disability blogsphere how comforting it can be to have finally found "my people." This blog post is particularly raw. I questioned posting it, but I've decided that if I could help even one person to realize that they are not alone in their struggles then it is worth opening my heart this wide.

For the rest of my life Thanksgiving will bring forth a strong emotion from deep inside of me. It's right up there with October 10th. I think I've been bipolar since I was 15. approximately. I went around for 7 years knowing that there was something "wrong" (for lack of a better word) with my head but I couldn't get anyone to recognize the pain I felt being only partially diagnosed as "twice exceptional" (I guess being smart and having CP also counts? Maybe I'm "thrice exceptional"?). The strong emotion that I associate with this year's Thanksgiving has little to do with just being thankful, but more to do with my life at this time last November. I started a downward spiral last Oct 10. I didn't know that the antidepressant I had been prescribed 3 years earlier had been making me manic during the times I was actually taking it. Who knew antidepressants could make a person manic? It only took one dose to trip me off. Thankfully my quick change in mood raised the concern of both my previous and current shrinks and I was referred to a new psychiatrist who would be able to follow me while I'm up at school.

I certainly have some serendipitous timing. It turns that October 10th, the anniversary of when I decided to finally consistency start taking my medication-- quite by accident-- is world mental health day and Thanksgiving weekend is when I hit rock bottom. I had gone from complete mania to a severe depression in less then 2 months. I can remember pleading with my mom and her boyfriend to leave me behind at school while they traveled up to New Jersey to spend Thanksgiving with my family. It was too painful to do anything but sleep. I can remember spending up to a week between shrink appointments only leaving my room to go to kitchen to grab some food once a day and then crawling back into bed. The only other thing that got me out of bed was going to get my laptop to peruse the disability blogsphere (it was then that I decided to start this blog). Something happened last Thanksgiving weekend that set me on a horrible schedule of falling asleep at 5am and waking up at 3 in the afternoon. It was the Monday after Thanksgiving that I found someone to finally believe me that after all those years the pain that I was feeling had nothing to do with my family dynamics and that I wasn't just looking for attention or an excuse for my behavior. I got a prescription for mood stabilizers that day. They've changed my life.

As this year's Thanksgiving has been approaching I've found myself thinking about all of the changes in my life this past year. I knew my life was better, but it took remembering the struggle of getting me out of bed last Thanksgiving day to fully realize how far I have come. So this Thanksgiving I am thankful.

I am thankful:

• For the disability blogsphere and all of the people I have been able to connect with over this past year
• For the ability to do simple things such as change my clothes everyday and take out the trash.
• That this semester I am passing all of my classes. I've had to make some changes that haven't been easy, but they've been worth it. I am especially thankful that I am not only passing my community services for families class this time around, but that I have an 88. It's a tough class for anyone and even tougher when you're "thrice exceptional".
• That through only 3 degrees of separation I was able to meet 2 very special people in my life (they know who they are) who have allowed me to almost completely shed my negitive self-concept and fully embrace my inner crip. They're my biggest cheerleaders
  
• That I've learned to focus on how far I've come and that now when I list my attributes I can list not just the negatives but also the positives
• That there are other people who also recognize how far I've come
• That as of Saturday, after 3 weeks of a non-functional powerchair, it is now in top working order again

I'm running out of time, I have to make an appointment, but I'm sure within the next few days I will be coming back to edit this list.

Last spring I heard about a book on the radio. Not Quite What I was Planning: Six-Word Memiors by Writers Famous and Obscure (Disaboom's very own Karen Putz made the book!). It was pretty easy to come up with my own six word memoir-- Always trying but never quite there. In the span of only 7 months I can now change my memoir. Always trying and I'm almost there. Please share what you are thankful for this year. I'd love to hear.