My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Archive for August, 2008


August 31st, 2008 | Category: Life

I accidentally deleted the last 20 comments which makes me astonishingly stupid.

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Four Rooms

August 31st, 2008 | Category: Opinions

Four Rooms sucked when I was 17 and as I’ve just discovered, it totally sucks now. I don’t know what that means, exactly. Is it really bad? Have I not grown up enough, or at all? I don’t rightly know.

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iBook Surgery

August 29th, 2008 | Category: Life

My assistant, Sarah, has an iBook with a dead logic board, so I convinced her to hack it open and save the hard drive… which she did! It was fucking impressive…


Talking to Republicans

August 29th, 2008 | Category: Life,Opinions

So, a bunch of my mom’s friends and associates who have kids with disabilities are Christian conservatives and they now LOVE Sarah Palin. Well, somehow I ended up on their mailing list, and, well, I got involved…

You’re assuming that a VP Palin would be able to DO anything in her office.  Our country’s in a hole, our society’s practically moving backward in every way important.  McCain would just be a different flavor of what we have right now, and what we have is pretty rancid.  America needs a change, something completely different.  I guarantee that if we stay on our current path of war, pollution, cultural stagnation, rights for the relatively few of us with disabilities will be quite low on anyone’s “to-do” list.  


Michael Phillips
On Aug 29, 2008, at 8:24 PM, Nikole wrote:
Dear Michael,         

I so respect and honor you as a person.  No one has lived the life you have, no one has the knowledge of what it is like to fight for rights, even for life itself as you have.  I must agree that no one administration – Republican or Democrat is the answer.  Over the years your mother and I have fought battles on both sides of the political realm just to get what children with disabilities needed.  We have seen an amazing Governor Jeb Bush honor our kids and the horrible Governor Crist cut their services to the point of families losing their ability to care for their loved ones in their homes – both Republicans.  I have seen amazing work by the Kennedy family for our kids, and at the same time several Republican Presidents who signed more civil rights laws into action than the other party.  

What I have learned, and even more recently experienced is that amidst all these who we choose to support or believe in, there are those who care, those who understand, and those who do not – and unfortunately most do not.  What I see in Palin is a glimmer of hope that she will “get it.”  I have a new word for the most insidious form of discrimination – Benevolent Discrimination – most likely the title of the book I will write some day.  It is meant for those who seem to care, but instead have very low expectations.  We found that in the judge I just had for my due process ruling.  If you read the ruling carefully you can sense the discrimination.  The fact is that he felt Andrew was not capable of what we were asking and that the low expectations of his teachers were okay, since they were doing their best, and they cared for him.
I think it must be akin to those slave owners who treated their slaves well, physically, but never believed they were worth valuing on an equal basis.
The Republicans have failed people with disabilities.
So have the Democrats.  The Democrats of today are not the same as the party of Martin Luther King.  I heard his niece on the radio on the historic day of his speech, yesterday, and she decried the abortions in this country her uncle would have despised.  
So in no party is the answer.
The answer is in the hope we need to all seek, no matter who is elected.
The answer is in the valuing of worth of each individual in our country as equal  – not special rights for special interests,  but equal rights, no segregation for the disabled, and no low expectations.

One of the wisest men I know, a proud member of the Green Party, Mark (who in a personal letter to me after our recent loss said the following) (hope you don’t mind me sharing Mark)  The root of the problem in our schools and in society in general is an ugly prejudice toward individuals with disabilities.  It has to do with the way society views their worth.  We live in a crass, commercial age, where we measure human worth by an individual’s ability to conform to our view of physical beauty and intelligence and their ability to produce capital wealth.  The revolution that is needed is a spiritual one, where we view an individual’s worth by their spiritual beauty and the innate value given by God.
I have been following Palin since the birth of her child in April, and have learned that she understands the value of her child, his “spiritual beauty and the innate value given by God.”  While I understand that it takes more to run a country than valuing one human life, one that some would say a life worthy of abortion, I think it is a good start.
With love

On Aug 29, 2008, at 7:03 PM, Michael Phillips wrote:

Trust me, I don’t think a Republican administration is God’s answer to anything.

On Aug 29, 2008, at 6:56 PM, Lilly wrote:
Amen!  Praise be to God!  This is the best news I have heard in a long, long time – I have to say that as a registered democrat who served for several years in a democratic administration, my vote will always be for “our children.”  And this mom of 5 is one of us and she sure has my vote!!!!        
Dear Friends,
What I thought to be only a long shot has come true. For the first time in this election I have hope, real hope for our children, our broken education system. I cried when I learned McCain had chose Sarah Palin for his running mate.
Read her personal statement regarding having a child with Down syndrome.
On April 18, 2008, Palin gave birth to her second son, Trig Paxson Van Palin, who has Down syndrome.[11] She returned to the office three days after giving birth.[12] Palin refused to let the results of prenatal genetic testing change her decision to have the baby. “I’m looking at him right now, and I see perfection,” Palin said. “Yeah, he has an extra chromosome. I keep thinking, in our world, what is normal and what is perfect?”
Read her position paper on education:
Never in the history of our country has anyone with such personal, direct ties to a child with a disability come into the Presidency/vice presidency. In times when many of us have considered our views non-partisan – what matters is our kids – here is our chance to vote for our kids and their rights. I have no doubt that Palin will advocate for us in a new, fresh, strong way. I will take any woman with the nickname Sarah the Barracuda.
from an older blog:
This blog is the result of about a month worth of research on potential Republican Vice-Presidential candidates for the 2008 election. I had been considerably less than thrilled with all of the early speculation, mostly swirling around second-tier presidential candidates, so I decided to see if there was anyone better suited for the job that I hadn’t been hearing about. So, I developed the following profile for the perfect VP candidate (using Rudy Giuliani as my presumptive presidential candidate):
1) A energetic, young, fresh face who will energize the electorate
2) Not connected to the current administration
3) Pro-Life
4) Pro-Gun
5) A woman or minority to counter Hillary or Obama and put to rest the idea that America only elects white males
One of the first names I found that fit these qualifications was that of Sarah Palin, the recently elected Governor of Alaska. I knew that I had stumbled upon a fantastic candidate for national office, but I kept looking in the hope that I could find other potentially viable choices. However, after looking at every GOP governor, senator, and congressperson, I found that Palin had only become more appealing.
She was certainly energetic and young, having become governor at only 42 years of age. Watching her speches and campaign ads, I discovered that she was definitely a new kid of leader, coming off more as a spunky soccer-mom than a stuffy career politician. As for abortion, she was staunchly pro-life; and as a lifetime NRA member she was the most pro-gun candidate in the country. Furthermore, her experiences in rural Alaska provided a perfect complement to the big-city credentials of candidates like Giuliani. Her moderately libertarian positions on most other issues also match up perfectly to Giuliani.
There was thing about Palin that initially worried me – “lack of experience”. She had only been elected governor in 2006, and her only previous experience was as a two terms as a city councilwoman and two more as mayor in Wasilla, AK (population 8,471 in 2005) followed up by a failed campaign for lieutenant governor and a brief stint on Alaska’s Oil and Natural Gas Conservation Commission. This didn’t seem very appealing at first, but then I took the time to look closer at Palin’s history. What I had failed to realize was that she had habitually knocked of powerful incumbent opponents and was a quick learner on the job. In the 2006 gubernatorial election, she rolled over scandal-prone incumbent Frank Murkowski in the GOP primary, then went on to defeat former governor Tony Knowles in the general election – pretty impressive. Further back, she had knocked off an entrenched incumbent to become mayor of Wasilla, then developed a reputation as a hard-nosed, effective mayor. Her performance in Wasilla got her elected president of the Alaska Conference of Mayors and earned her the nickname “Sarah Barracuda”.
In the end, I decided that Sarah Palin had actually compiled a rather astounding record of achievements in her 42 years, and was more than capable of making the jump to the national level. So now I ask you who you would rather have as your Vice-President. You could accept conventional wisdom and choose from the lineup of old men currently being bantered about, or you could choose an inspiring leader like Sarah Palin. As for me, I’m going with “Sarah Barracuda”, a candidate who will help us win the election and then deliver solid results.

Attempted Poetry 1.0

August 28th, 2008 | Category: Attempted Poetry

I love and fear, strongly and purely.

Driven by both, ruled by neither.

I’m perfectly contradictory, broken and whole.

Completely hopeless, completely faithful.

Always wanting, never still.

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Emo Goth Atheist Poetry Blog

August 27th, 2008 | Category: Life

For a few hours this week I seriously considered making this an Emo Goth Atheist Poetry blog, but I’m not quite ready. I really don’t have the energy for it, nor do I know how to write poetry. Also, as much as I thought about it over about fourteen-hours, I’m definitely not an Atheist. The idea that God couldn’t hate me or punish me because there is no God seemed really nice, but then it felt really empty and frightening. If there is no God, even a God that hates me sometimes, then that means I’m entirely alone. I have nowhere to go for help, or to ask for forgiveness to get help. Everything would be random, and I just don’t like or accept that idea. I can’t. Maybe I’m weak, I don’t know.


Left of center

August 27th, 2008 | Category: Life,Random Thought

If you want me you can find me left of center, wondering about you.



August 24th, 2008 | Category: Life,Random Thought

it’s really getting difficult to totally fucking suck at everything.



August 23rd, 2008 | Category: Life,Opinions,Random Thought

So, I’m back from the hospital, again. I didn’t explain it clearly, but I was in the hospital all last weekend until Monday evening with a nasty stomach virus. I felt good when I got home, but for whatever reason, I started coughing and by Tuesday evening I was back in the hospital with respiratory issues. I would rather break each finger individually than have trouble breathing. At some point, no machine or medicine is going to keep me breathing, so I always get nervous when breathing feels difficult.

At any rate, I’m out and feel better. I’m trying to decide what to do today, whether to stay in or drag myself out. I’m not exactly sure. For a moment I thought about going to see Death Race or Star Wars: The Clone Wars, but life is too fucking short. There has to be something else. Life is bigger.


Somewhere else

August 21st, 2008 | Category: Life

For a very long time, he felt as if he didn’t quite fit his life. Somewhere along the way he fell through the dusty and cliche looking-glass, he ended up in a familiar place that just felt wrong. It was difficult for him to see exactly what made the world feel so strange, perhaps he was afraid to look too closely. Afraid to pick at a world that might shatter and become something worse. Still, he knew enough to know that things just weren’t right, not for him. In all of his travels, no matter how grand or exciting, there was a heaviness in his chest, a haze in his head. He felt a longing to be somewhere else almost every waking minute, but he couldn’t particularly say where. He felt alone in every crowd. He slept little, sleep doesn’t easily find one so ill-contented. He was the happiest dour fellow around, he filled the dark with showy false light. For a long time he wandered, lost in melancholy, not really knowing how to begin what he eventually began.

Okay, I’m sick of writing about being lonely and unhappy, lost. It’s SO EASY to be lonely and unhappy, you just have to lie down and wait for it. Breathing is more difficult. This always becomes so clear in the hospital, when I’m always half-afraid I won’t get to leave again. So, here I am in the hospital, looking past my MacBook out on to the shitty skyline of Tampa and I don’t want to be here. Right now, and really for the first time, I know exactly where I want to be. I’ve known in a broad sense for a few years, but honestly, getting there could seem just as frightening as not getting there. I found that place of contentment and lost that loneliness, but I fucked up twice.  I let things scare me off. I regret letting that happen. I let life feel overwhelming without trying hard enough to steer things right. Not anymore. Not if I have anything to do with it. What I want is not always easy, but looking out this window with a needle in my neck, knowing everything I know at this moment, I’m really not afraid of the rest that scared me so. I’m writing this to the most important person in my life. I love you, more than anyone I’ve ever met. I’ll say it here, I’ll say it to you, I’ll say it anywhere. I don’t care. I was definitely afraid to be with you and not be with you, both at different times, but not anymore. I’m not afraid to say I want you, you’re everything I ever wanted to find. I want to write during the day and fall asleep at night with your head on my shoulder. I want us to have our own family. You’re my Rushmore.


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