tag:blogger.com,1999:blog-34891042525521581762024-03-13T22:32:31.936-07:00Things No One Ever Tells You allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-3489104252552158176.post-56443170676961636372018-09-14T18:48:00.000-07:002018-09-14T18:48:04.935-07:00For You<br />September 11th, 2018 was a significant day. The anniversary of the biggest terrorist act the United States has ever seen, the day I came home from my first international trip, and the day that John H. passed away.<br />
<br />
I won't pretend to have been really close to you. If there are pictures of us together I don't know where they are. We never had deep philosophical discussions. We never talked much outside of camp, except for maybe when one of us was in the hospital. Truth be told, I don't even know when it was we first met, you were just always there, a part of either the MDA camp or Camp Promise West family.<br />
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I don't really have any stories, just facts and observations. You and I were the same age, 26. As a kid 26 seemed ancient. I lost my first close friend with Muscular Dystrophy when I was 13 and by 20 I had lost 1-3 friends from camp a year. 99% weren't yet 25 and none of them had ever made it to 30. That amount of death at such a young changes you in ways you don't always understand. For example: I don't grieve “normally,” whatever that means. When I find out another person from camp has passed it can take days or weeks before it sinks in. I won't cry until I hear that particular song/story or see that picture. Even then, I only allow myself one good crying session because I feel like anything more damages the memories of my friends. I am more desensitized to death than I should be at this age. Or maybe I'm not desensitized maybe I just don't feel like death really cancels out life. <br />
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Anyway, now that I am 26, it does not seem so ancient. There is still so much I have to see and learn and thanks to medical advancements in my particular form of MD, I might actually have time to do said things. So no, 26 isn't ancient but it is lonely. Especially when cabins at camp that used to be full grow more empty by the year.<br />
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I said before that John and I weren't close which is true. But there is a special bond you have with someone when you grow up together and both have Muscular Dystrophy. It's being silent and watching the sun set while you sit right next to each other, because sunsets mean a little more when you know you might not make it to 30. It's knowing that our 26 does not emotionally or physically feel the same as the average 26 year old. It's sharing war stories of hospital stays, crazy caregivers/counselors, or the times we almost died. It's sharing a mutual respect for death while simultaneously giving it the finger because neither of us would go without a fight. It's constantly perfecting our personalities because we know it is the only thing we have to draw people in.<br />
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Speaking of personalities, yours was 1 in a million, John. When it came to sass and eye-rolling you were my male equivalent. When it came to your accepting heart and perpetual willingness to listen we were not equals; you were the master. You were the only proud, Republican who could make anyone love him and it was because your heart was beautiful. And while you would roll your eyes at my different beliefs you'd never shut down the conversation and that is a rare quality. I will cherish all the moments we spent at camp joking around or just being near each other. I'm not sure what camp will be like without your music, fart machine, t-shirts, and most of all your laugh. The Blue Cabin might just be a bit more subdued.<br />
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And if you taught me anything, aside from how to just be a better human in general, you taught me how to appreciate all the moments. Now I suppose I have to figure out how to go hunting, shooting, [insert any other country thing you were into] in Montana without you. Because Angie, Amber, and I owe you a road-trip. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-84513470125315136252018-07-10T16:13:00.002-07:002018-07-11T15:22:37.968-07:00The Side of Treatment we Don't Discuss: My First Dose[I apologize for my hiatus but I was busy living life]<br />
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This is going to be a long one, folks, so buckle up. With treatments and cures comes some unpleasant feelings and I wanted to shed light on some of that. <br />
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First a little background: in May I posted this status on my personal Facebook (feel free to skip the quote if you've already read it), “July will mark 25 years since I was diagnosed with Spinal Muscular
Atrophy(SMA), the #1 genetic killer of children under the age of two. In 1993
there was no hope or treatment. I was young when I figured out that
every day meant I was a little bit weaker than yesterday. I don’t really
talk about it, the bad days, the fact that I can only use two fingers,
or the fact that t<span class="text_exposed_show">here are days I can
barely drive my chair. I don’t talk about it because it’s my reality and
I’m kind of allergic to pity. I accepted the fact it would never get
better and there would never be a cure/treatment. <br /> <br /> Well, in
December 2016, the first treatment, Spinraza, was approved for all types
and people with all ages of SMA. If started at a young enough age it
has shown to reverse the disease, the older patients don’t always notice
drastic results, everyone is different, but regardless of age it has
shown to definitely stop the disease in its tracks. <br /> <br /> Well due
to politics I have not been able to get the drug. I have been enviously
watching kids here, adults nationwide, and worldwide get this drug. I’d
lost hope. It’s been hard watching others gain strength while knowing I’m
getting weaker. <br /> <br /> Well, today I found out I’m one of the
handful of adults that Aetna has actually approved the drug for. With a
drug that’s 750k the first year and 350k every year after it’s a huge
deal. The hospital here is finally dosing adults so I will be getting Spinraza very, very soon! Like maybe a month out. <br /> <br /> I feel extremely blessed right now! Here’s to hoping the procedures goes smoothly. I will keep y’all posted." </span><br />
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<span class="text_exposed_show">I mentioned Spinraza that one time and then I never mentioned it on public social media again. </span>I think part of the reason I struggle with keeping up a blog is I am in constant debate about how much of my life belongs to me and my circle and how much I should share with the world. I shared that status without much thought because I was so flippin' excited. But then I felt a lot of other things I had not been able to put into words.<br />
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Hundreds of people liked/loved and commented on that status saying things like, “I am so excited for you. I hope you get better/stronger.” In my heart of hearts, I know that they meant well. But then there's this other part of me, the part that has spent my entire life learning how to love myself because of and not in spite of my disability that had a problem with all the well wishes. You see, I can count on one hand my friends I actually get to hang out with in person and on the other hand I can count the men I have dated. What that means is I spend 95% of my time with caregivers (basically being alone) or family members. I spent my entire youth wondering if I was less disabled if people would actually want to hang out with me. Hell, I spend a lot of my adult life in that mind-set, too.<br />
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To see all these people that I grew up with that never took the time to hang out with me, yet they were so excited for the opportunity to see me get better, it just confirmed what I had always felt, which is I would be more lovable if I were more physically whole. That pure ableism put a damper on my excitement. Even though I told people the only guarantee with the treatment is that it would stop the progression of my disease (which is more than enough if you ask me) I now had all these other people's hopes and expectations that I would get stronger. It felt suffocating and because of it I shut down.<br />
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Then there's the fact that the procedure itself is terrifying. In layman's terms the injection is administered via your spine like an epidural. In the average person it takes 5 minutes in an out patient clinic. But if you're one of the many adults with SMA who has metal rods attached to your spine holding it straight, chances are the normal method is not going to work. You'll have to do it under a live CT scan and if you're like me with 16% lung capacity you might choose to do it without sedation because sedation weakens your respiratory even further.<br />
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I had heard a lot of horror stories. Anywhere from the doctors aggravating nerves with the needle to getting a debilitating spinal headache post injection that could last hours or days. And the worst case scenario would be that my back would be too complex for them to do the procedure. So yes, I was a nervous wreck.<br />
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By the time July 2nd came I was more than ready to get my first dose out of the way. After waiting my whole life for this day, trying not to have expectations, dealing with everyone else hopes, plus accepting the fact that I actually had hopes, and dealing with the whole unknown of the actual procedure I was a mess. But the procedure came and went without any complications or side effects and it was only about 70% as painful as I was anticipating. There were drugs on standby and I didn't even need them. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-HqqOF0c4E3I/W0Uv6u7kZyI/AAAAAAAAAeM/kVzSEWscd-g3s0GQebYInzBwarDogXfPACLcBGAs/s1600/spinraza%2B7-2-18.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" src="https://4.bp.blogspot.com/-HqqOF0c4E3I/W0Uv6u7kZyI/AAAAAAAAAeM/kVzSEWscd-g3s0GQebYInzBwarDogXfPACLcBGAs/s1600/spinraza%2B7-2-18.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">7/2/18 post injection #1, my spinal fluid is now worth 125K (something like that, I do words, not numbers), holy canolie! </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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When it comes to Spinraza there are 3 types of people. 1. The people who have been doing it for over a year and feel nothing because, remember it's only supposed to stop the disease from progressing, anything else is a bonus. 2. People who needed a few doses to feel any changes. And 3. People who felt changes within 24 hours or less of the first dose. Truth be told I am in group 3, it took maybe 15 hours and I have never felt more excited or hopeful.<br />
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With that overwhelming hope though, came the decision that I am not sharing every gain on social media. SMA has been a disease where I have had to deal with the losses mostly on my own and with a small group of people and I will deal with the gains of it that way too. Thus far, it has only been small gains but small things will add up into bigger things and maybe one day I will talk about it more freely. But right now this is where I am. If you're curious to see the things Spinraza can do Google/Youtube it; tons of people are sharing their journeys.<br />
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This is a moment of change in my life and while I welcome change it can be emotionally taxing. By my 26th birthday I will be receiving my 3rd dose of Spinraza. And I'm realizing a huge part of my identity is loss and learning to cope with it. In all honesty I do not know who I am if I don't have another lost ability looming over my head, if I'm not fatigued from the moment I wake up to the moment I go to bed, if I'm not working on a significantly shorter time-line than my able-bodied peers. I am turning 26 with all the possibilities I had given up years ago and it is as exhilarating as it is frightening.<br />
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What I need in this time of flux is support, comfort, and normalcy. Please do not ask about the changes I see if I have not brought it up with you or if you do not hang out with me enough to actually notice. Whatever positivity is happening it is strictly for me and my support group that have always been there. That may sound odd or rude or whatever but I am too old and lack the energy to spare everyone's feelings. I appreciate everyone's support and well wishes up until this point, I do, but I also feel overwhelmed with expectations and the ableist notion that I will get significantly better. If I don't continue getting better I need to know/feel that that is okay, that I am still enough and I want people in my life that make me feel enough as I am today. Not everything "broken" is inherently less valuable and needs to be fixed. And if for whatever reason, I one day decide to stop this treatment, I want support in that decision as well. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-43741141612403505512016-12-23T16:01:00.001-08:002016-12-23T16:01:31.424-08:00No More DeathsMy disease, Spinal Muscular Atrophy, is the number 1 genetic killer of children under the age of 2. Today I am 24 and I just witnessed history be made. But first, allow me to explain my disease.<br />
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I was born summer of 92. My mother said that when she was in labor with me the doctors joked that I was asleep because I wasn't helping with the descent at all. My mother also says had I been her second and not her first child she would have known that something wasn't quite right because my movement in utero was gentle and my little sister's wasn't. As they say though, “hindsight is 20/20.” As a newborn I had all 10 fingers and 10 toes. For lack of a less ableist term, I was “perfect.”<br />
<br />
However, I never walked, I never crawled, and never rolled over in my crib. I was soon diagnosed with Spinal Muscular Atrophy (SMA) and my mother was told to take me home, love me, and plan my funeral. You would be surprised how many parents got and still get that same speech.<br />
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Obviously I didn't die but that doesn't mean I don't know death more intimately than a person my age should. I was 2 the first time I almost died and I was 17 the last time; there were countless times in between those years. Somewhere early on I accepted the mantra “I will never be as strong as I am today.” You see...<br />
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If SMA doesn't rob you of your life it will rob you of all the other physical things. I only remember what my smile was like when I look at old pictures; I was maybe 5 when I started losing it. I got a feeding tube at 2 and a half because that's when I started choking on food. I don't remember the last time I picked up a pen. I do remember laying on the couch in the third grade and becoming aware for the first time that I could no long extend my hands back, it was then I knew I would never do it again.<br />
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The thing about SMA is it's a sneaky mofo and it'll plateau for years tricking you into thinking you got this. Only to rear it's ugly head and suddenly you can't draw anymore, you stop wearing jackets because you can't drive your chair otherwise, or a simple head cold has landed in the hospital and you're either going to die or going to go home with some machine you don't want to help you breathe.<br />
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But as of today, 2016 Will be the last year any baby, child has to die from this disease. The FDA has approved the very first treatment for SMA, something I never dreamt of seeing in my lifetime. When used on infants and little kids this drug has shown to reverse the damages of SMA and help people gain back some strength.And that my friends is the best Christmas gift that anyone in the SMA community could have hoped for.<br />
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http://www.curesma.org/news/spinraza-approved.html?referrer=https%3A%2F%2Fwww.facebook.com%2F <br />
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(I'm not sure what it means for people my age/older as there's some controversy over how the drug will be administered to people who have rods in their back. I'm content with never smiling again or using my hands like I used to but if I could just maintain that would be enough.) allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-7935569133919381012016-11-09T15:08:00.000-08:002016-11-10T19:46:16.399-08:00Thank You, U.S.I couldn't finish watching the results come in during Election Night 2016. As Trump kept getting closer to 270 I went to bed praying for a miracle. I knew that after having 8 years of Obama we probably wouldn't have another democratic President; the good ole' boys, hillbillies, and the elite just weren't going to go for it. But never in my wildest dreams did I think Trump would be the republican nominee. And more people didn't vote for Clinton because she was just another slimy politician, the lesser of two evils. We wanted someone to break the mold and it should have been Bernie but we didn't get Bernie so I voted for Clinton. This election was so despicable that many people (aside from the poor and uneducated) didn't vote at all and the consequence is a “white lashing” (definition: a back lashing fueled by angry, white people) so deep it hurts my soul.<br />
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I woke up this morning completely forlorn and terrified for my future because the United States just told me I don't matter. Before I address my concerns let me tell you the main demographic for Trump (this isn't me being a bully, this is straight from the analysts): uneducated, white people. If that doesn't say that this country has a serious education problem I'm not sure what does.<br />
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My concerns:<br />
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1. I am a woman. Thank God, I'm not conventionally attractive or beautiful or Trump would want to grab me by my pussy. That's sexual assault. But Trump said that was just locker room talk. So is that what were going to teach boys? It's alright to talk about another human being as though they were made solely for your penis and pleasure because our President does it. And we will probably continue teaching our girls to fear men and not realize that our bodies belong to only us. I could go on about all the disgusting things Trump has said about women or you could just look up “Trump and women” and see how many hits you get.<br />
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1.a Let's talk about reproductive health. As long as Trump is in office Planned Parenthood probably won't get funding for the next 4 years (I refuse to entertain the idea that he will get a second term). That's millions of women, myself included, who won't get affordable/free health screenings, birth control, abortions*, or mammograms. Let me just say, that as a woman with a physical disability Planned Parenthood has been one of two medical providers that has treated my sexual and reproductive health with respect and normalcy.<br />
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1.a* I could write dissertations on abortion but I'll try to keep it brief. I'm a Christian. I'm also pro-choice. It is the epitome of hypocrisy to be pro-life, pro-war, and anti government assistance. Please, see how illogical that is. Also, please understand that as long as women are the only ones responsible for carrying children there will always be abortions. It is not "ripping a baby from limb-to-limb" nor is it a decision the majority ever make with ease. It is a burden anyone who gets an abortion realizes they must carry on their own. Without safe, legal abortions we will go back to the days of coat-hangers, back-alleys, and asking our boyfriends to beat the babies out of us. If you think I'm being melodramatic pick up a few history books.<br />
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2. I have a severe disability. The other day I had my yearly meeting with my case manager who gave me the whole spiel that basically says the state of Washington will not cover 24 hour care and should I ever require it (the joke is on them because I do require it) I would be put in a nursing home. Mind you, there is never enough staff in nursing homes so they happen to be places where people like me die from neglect and or abuse. That is one of my biggest fears, it keeps me up at night. How the hell will I continue to live an independent life if my hours get cut or if something happens to any of my back up caregivers? When I think of Trump I think of everything that will get cut: SSI/SSDI, public housing, Medicaid/Medicare, caregiver hours, etc. All of those have a direct impact on my life. "Stop living off the government," you Trump supporters, bellow. Yeah, I'll stop doing that as soon as I start making over 200K a year because realistically that's what someone like me needs in order to get the care they require.<br />
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3. I am a woman of color. My mother is white and my father is black. I might be pale but for all intents and purposes my hair is what I affectionately refer to as “black people hair.” For the longest time I unintentionally “passed” because I kept my hair straight. I rock a ‘fro pretty regularly now and it's funny because for the first time in a very long time people realize I'm black. What's not so funny is last night for the first time in my life it occurred to me that if racial tension gets real bad I could go back to passing and this time it would be intentional. And I'm terrified for my brothers and sisters that cannot pass for anything but black because last night in the Trump headquarters, I saw a bunch of delighted, white, people wearing hats that said, “Make America Great Again.” Which America is that? The America that was built with our sweat, blood, and bodies? The America that kept the corpse of a black woman on displays at museums for decades because of the size of her ass? The America that gave black people syphilis and denied them the treatment when it was discovered? The America that assassinated MLK Jr. and JFK because it wasn't ready for equal rights? The America that mutilated and killed a black boy for whistling at a white woman? The America where people in authority get “scared” and will kill people that have no weapons? Or the America that is 12% black and has a prison system where over 50% of the population is black? What is insane is that's only one group of marginalized people.<br />
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Of course, my heart is broken. And I didn't even touch upon the fact that LGBTQ people might be told not only is their love invalid but it's no longer legal, that Muslims and Mexicans are probably going to get deported to God knows where regardless of where they were born or grew up, and Trump's hateful mouth is probably going to bring WWIII to American soil because if other countries didn't hate us enough now they have every reason to. And the icing on the cake? Republicans control the House and Senate. Good job Americans for saying a big, “Fuck you,” to everyone that isn't a rich, white, penis-attached-to-their body-human being.<br />
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That's okay, I still choose love, unity, and peace. Hell, I even still love every rich, white, man who doesn't think he owns my pussy or is better than me just because I own a colored pussy that happens to be sitting in a wheelchair.<br />
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I'm beyond tired and will accept hugs and cheese to make me feel better. But really, if you don't think you matter, you matter to me. <br />
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Obama wasn't perfect (I do love him and his family), no one is, but how many years does it take to build a society and how many days does it take to burn it to the ground? Be prepared to find out. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-66644407566948564132016-09-24T20:12:00.001-07:002016-09-24T21:45:00.091-07:00Three 14 Year Old Girls During three different times there were three different 14 year old girls. They all had one commonality: death intoxicated their minds.<br />
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We will call the first girl Maria. She came from a broken home in a broken neighborhood where the sidewalks were as cracked as the people. She grew up too fast; took leaps when she should had been learning to crawl. At 14 she had half a million emotions coursing through her on any given day and many were just due to the changes her body was making.<br />
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Sometimes though, the emotions combined with her life decisions were too much. So she did what teenagers do when they cry for help without even opening their mouths. And the right adult noticed. Because let's face it, 14 is a hard age and depression is more common than it should be.<br />
<br />
Maria said that she often thought of killing herself. That she couldn't see beyond the next four years. That nothing was ever going to get better. She had already lived and been through so much she didn't want life anymore.<br />
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It was concerning to say the least when such a young person had such dark thoughts. She was healthy. She was completely normal. Her life had just begun. That's why her mother had Maria go to a therapist.<br />
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Someone had to teach the girl that her life was only beginning at 14.<br />
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Maria would grow up and be thankful that someone taught her life was worth living.<br />
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Magdalena was the second girl. She was born with a disease that never allowed her a chance to walk. By the age of two she had a feeding tube and by the age of ten her arms were pretty useless. Her legs were an electric wheelchair and one of her best friends was a machine that helped her breathe at night.<br />
<br />
Magdalena was hungry for life. Despite her craptastic body she was going to grow up and taste the bittersweet nectars of adulthood.<br />
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When she was 14 she had a bad hospitalization. She had had many up until that point. But this one was different. This one had nothing to do with her disease. It was two months of debilitating, vomit inducing pain. More than anything she wanted to die because life had never prepared her for such intense physical pain.<br />
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She didn't want to tell anyone. If she was going to die it was going to be a private affair.<br />
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Magdalena didn't die though because her mother wasn't going to have it. She knew that Magdalena had more to offer and experience despite how her daughter felt and what the doctors predicted.<br />
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Magdalena's mother was correct. Magdalena would grow up to be forever grateful she had a mother that saw the value of her daughter being in this world.<br />
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The last 14 year old girl I won't say her name because many of you already know it. But for all intents and purposes we will call her Sarah.<br />
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Sarah was born with the same disease as Magdalena. Sarah could only move a few fingers and her head just like Magdalena. Sarah required a vent to sleep at night just like Magdalena. Sarah never had many friends just like Magdalena. Sarah was wise beyond years the same way Magdalena was. The only difference between the two 14 year old girls was Sarah was supposedly in pain every single day and Magdalena wasn't.<br />
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So Sarah decided she was done with life. She just couldn't do it anymore. She announced her decision to the media, she had a dance where everything was donated and the whole town came, she raised an astronomical amount of money (no one knows exactly what the money was for), then she went to hospice and died.<br />
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Her suicide was lauded as "heroic" and "brave" when Maria's suicide would have been seen as "tragic." Why is that? We could talk about the ethics of this all day and honestly only Sarah and her mother know all of the details but please don't try to argue the fact that some lives are not perceived to be worth more than others because media tells us otherwise.<br />
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They were all just 14 year old girls.<br />
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(By the way, due to horrible reporting, now when people look up Magdalena's disease she has to work even harder to make them understand that she's not a hero for living just because of how Sarah's life was portrayed.)<br />
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The end<br />
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At 24, if I decided I wanted to die tomorrow and you think you care about me and you wouldn't tell me to fight then you are part of the problem.allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-6201172882576854172016-05-27T16:02:00.004-07:002016-05-27T22:19:16.119-07:00Me Before Ableist B.S.As a person with a severe disability no one has ever told me to my face that my life is worthless but I'll be damned if Hollywood doesn't constantly push the notion that it's better to be dead than disabled.<br />
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I wasn't going to write this post. I haven't read “Me Before You” and I don't intend to see the film adaption. I've only read tons of spoilers and articles about the book. So what right do I have to my opinion? Well, being a person who is for all intents and purposes, paralyzed, I think I have the right to this opinion.<br />
<br />
In case you've been living under a rock let me catch you up. that was my not so nice way of saying there are spoilers. “Me Before You” is about a young man, Will, who is suddenly paralyzed in an accident. Long story short, even after him and his caregiver fall in love, and his caregiver shows him what he's still capable of despite his disability (no sex though because people with disabilities don't have that <== sarcasm) Will, still decides to go through with assisted suicide to lessen the burden on his family and caregiver.<br />
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I won't pretend to know what it's like to be 100% able-bodied one day and in a wheelchair, dependent on everyone for care the next. I was born this way, more or less, God gave me lemons and like Beyonce I made some damn good lemonade. I think this book/movie is highly offensive to the majority of people who become paralyzed and choose to live. The author, Jojo Moyes, admitted to never even consulting one paralyzed person before writing this novel. Everyone knows a good writer does a lot of research.<br />
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And don't even get me started on the whole assisted suicide and the complete lack of actors with disabilities in Hollywood things. I just don't have the time.<br />
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Since this story relies on the whole plot device that people with disabilities are burdens to the world I thought I'd open your eyes to the truth. I'd be lying if I said I never ever felt like I was a burden to someone but I'd also be lying if I said I had nothing that was a burden to me. But then I have to wonder why I have ever felt like a burden to anyone?<br />
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Want to know what my biggest burden is? Ableism, which is "discrimination in favor of able-bodied people". This movie will be a hit because of ableism alone. Because we live in a society that ostracizes anyone different than whatever the hell normal is. And then praises “normal” people for dating “different” people while all the while wondering why they are together.<br />
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Ableism is having children and adults stare and point at you in public.<br />
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Ableism is getting to a venue and realizing there's no wheelchair accessible access and just having someone shrug and say, “Sorry.” <br />
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Ableism is reading comments on the internet in response to criticism of “Me Before You” and having able-bodied people try to justify this whole thing. They will say things like “I'd kill myself too if I was in his position.” Not even realizing that they have been brainwashed by society to disregard anyone that doesn't have a perfectly working body or mind. Not realizing that if they were one day disabled they probably wouldn't be so quick to choose the poison apple of death.<br />
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If humans have lived through the Holocaust, civil wars, slavery, and many other atrocities they can also live with a disability in one of the richest countries in the world if they receive the proper physical and mental health services.<br />
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Lastly, I am not ignoring the fact that my life is sometimes harder than average nor am I saying that people with disabilities don't have the right to decide when enough is enough but I am DONE with Hollywood and authors romanticizing and perpetuating all the negative stereotypes of my life.<br />
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At the end of the day I am simply a human that requires a lot of physical help. Just because I need someone to wipe my ass does not negate the fact that my life is worth living and is fulfilling. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-34503140149804047232016-03-22T14:48:00.000-07:002016-03-24T14:04:26.362-07:00The Invisible VoterDear Bernie,<br />
I chose you to take my campaign-speech-rally-virginity. Being a first timer I didn't know what to expect but I was excited. I had been vaguely following your slow ascent from a Vermont Senator to a serious contender in this election. I had listened to some of your speeches and I knew that many of your policies agreed with my moral compass. After also vaguely following Trump's shenanigans I'd decided if any election needs my vote it's the one coming up. So, when I heard about your rally at the Key Arena on March 20th I decided to go just for the hell of it. If I was going to continue to get behind your campaign I wanted to be as well informed as possible.<br />
<br />
Now before I get too far let me just say this: I've never truly despised having a disability but I frequently despise this country's (world's) way of making me feel unwanted and non-existent. For example: if everything in the world didn't have stairs that would make huge strides in making me feel less disabled. But society has never had people like me in mind and that needs to change.<br />
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The doors to the rally were going to open at 12pm and everyone online was saying to get there really early to get a spot. My prematurely old joints hate the cold but I put on my big girl panties, wrapped myself up in my poncho/blankets, and arrived at the Key Arena at 10am. I wasn't surprised when I got there and it took the staff hosting the event about 5 minutes to figure out where I needed to go. I wasn't irritated at that moment. I've been in a wheelchair since the age of 2, I know how life works. I needed to go around to the other side of the arena. I've spent many summers walking the grounds of the Key Arena so I knew my way around. I wanted to go straight through the middle but the staff wouldn't let me. I told them my hands were getting cold so it would be difficult for me to roll all the way around the arena to get to the proper side but they insisted. This is when I started to get perturbed but alas I acquiesced and went around because there's too many battles in my life for me to fight every one.<br />
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At the back of the line of about 100 people there was another woman in wheelchair. Immediately, we discussed the issue the staffers had figuring out where to put us. We joked that events never know what to do with us because people with disabilities aren't supposed to leave the house. I laughed but you know how they say part of every joke contains some truth? Well, I felt the truth of that joke dampen my spirits a bit, the way the rain was dampening my face but I tried to ignore it because I truly was excited to be there. Eventually, a staff member that had some sort of clue pulled everyone with a disability out of the main line and put us in the “A.D.A.” line. The purpose of this being that when things got going we would get to go in first.<br />
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Meanwhile, the rally was getting closer and one could feel the belief in you, Bernie, in the misty Seattle spring air. It was cold but hearing you speak was going to be worth it. Seeing everyone my age and younger supporting you was worth it. The bomb squad came with their dogs and gave the arena a go ahead. And after endless hours they told everyone in the A.D.A line to go stand by the entrance. It was time and I was feeling alive. I was feeling the Bern. <br />
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But as an after-thought, because let's face it if you're not able-bodied you're an after-thought to society, the Secret Service realized those of us in wheelchairs couldn't get through the metal detectors and bomb dogs would need to be used for us. Now I don't care that they had to use a bomb dog for us. What I care about was the piss poor planning surrounding the event. As opposed to doing the diplomatic thing which would have been to make everyone wait, they made everyone in the accessible line (some of your most fragile people) wait outside an extra 45 minutes. Secret Service let at least 300 people through while those of us with disabilities waited for the bomb dog to come back.<br />
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The sad thing is I'm totally used to being treated like a second rate citizen. I've spent my entire life taking the back entrances into buildings. Getting seated next to the kitchen doors at restaurants. Having retail people ignore me when I'm shopping. I accept it because it's my life. But this stunt from the Secret Service was the last straw. I was exhausted, cold, and angry to the point that I felt tears prickling my eyes. I debated with myself whether or not I should have gone home, since my presence was clearly unwelcomed. But, ultimately I stayed because I believed you would say something in your speech that made everything worth it.<br />
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Flash forward to 5 hours ahead and you walked on to the stage. I felt my heart pick back up after a long day of disappointment. Thousand of people cheered as you talked about Black Lives Matter, LGBT rights, every ethnicity, women's rights, and every other group of people. I loved everything you said but guess what, Bernie?<br />
<br />
You forgot about people like me. Essentially, you forgot about millions of potential voters that are waiting for one person to hear their complaints. Sure, you spent two minutes of your speech to mention the elderly, disabled veterans, and Social Security. You didn't mention the millions of people like me who are born disabled or become disabled for reasons other than war and age. You didn't mention that in most states people like me can't get enough caregiver hours to be independent of our families. You forgot to say that people like me are forced to live off the government or be super rich because that the only way we get the services we need. And lastly, you never said that people like me typically have to choose between marrying the loves' of their lives or having someone besides their partners get them out of bed and shower them. You would almost think that the millions of people that are like me don't exist.<br />
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Now Bernie, I believe in the things you believe in. All I'm asking is that you mention people with disabilities and the issues they face more extensively in your campaign speech. That maybe if people in the media actually talked about us there wouldn't be so many disability issues like the ones surrounding your event which I do realize were out of your control.<br />
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I'm just done feeling invisible. I am a person with a disability before I am half black or a woman because that is the identifying factor that impacts my life the most. And I expect to be recognized because the last time I checked my name on the election ballot is not stamped in invisible ink. Or is it?<br />
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Sincerely,<br />
.............allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-45507267919644590512015-11-18T21:42:00.004-08:002015-11-19T12:08:02.195-08:00Humility is Never BadNo one ever tells you... If you do it right, life will humble you.<br />
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As humans we tend to categorize and divide other humans. Ethnicity, gender, sexuality, disability, and socioeconomic status are just a few dividing factors. I was raised fairly middle class. I was blessed enough to go on a few trips as a kid, I always had what I needed, and I typically got what I wanted for Christmas and on my birthdays. So when I would see people with severe disabilities who may not have looked as clean as me or dressed as nicely as I did I internally put "those" people in a category that I would never be a part of. (Bear with me I was a kid)<br />
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A few blocks from the house I grew up in there was a low income building. The building was originally intended for those with all sorts of disabilities. While it has anyone who's eligible income wise there's a huge population of people with disabilities. Hence, growing up I saw many of "those" aforementioned people.<br />
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What my snobby younger self did not realize is people with disabilities are expected to live on roughly $700 a month. Why you ask? Because even though a person as disabled as me would need to be making a 6 figure salary to pay my medical bills and caregivers the government thinks if I'm making the average 30k a year I don't need their help. So it forces people with disabilities to either be poor or figure out how to be well off. Do you know how hard it is to have nice clothes and hair on $700 a month? I certainly didn't. Do you know how hard it is to be as hygienic as you should be when you're only allotted a small number of caregiver hours a month and there happens to be over 700 hours in a month? Fortunately, I have amazing family and friends so I won't ever know that struggle first hand. Nonetheless it's a struggle for many.<br />
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As life would have it I am now living in that building near my childhood home. Every day I am encountering these people that I used to think were so different from me. But they're not. Up until now I was just living under better circumstances than they were.<br />
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I think I used to distance myself from lower income people with disabilities because I didn't want the world to think I was like them. But I am exactly like them. Which isn't anything negative but it's to say that according to society my biggest identifier isn't that I'm part black and it isn't even the fact that I'm a woman it's the fact that I have a disability and that on the surface level I'm not like them (them being everyone who's abled bodied). And you know what, I accept that. I accept the disabled category because I'm a firm believer that as soon as you know your place in life the sooner you can start breaking molds and creating positive changes.<br />
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Acceptance is humility. And humility is growth.allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-48769010251078091342015-11-02T20:22:00.002-08:002015-11-02T20:22:33.031-08:00Long Time no Blog(I had to take a break but I'm back again. I've come up with a new direction for my blog and I have lots of ideas.)<br />
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No one ever tells you...sometimes you won't feel anything and that is okay as long as you learn how to feel again in the relatively near future.<br />
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For those of you that haven't been keeping up with me, I recently moved into my very own apartment. It's a process I had started at 18 that I had given up on in recent years. Starting in May of this year I received notice that I had a meeting with the Seattle Housing Authority saying that I needed to come to an orientation meeting or I would be taken off the list. So I went not really expecting much. At the meeting I was told that one of the apartments I signed up for may have an available unit within the next 6 months to a year. It was excited and it was a time frame that felt realistic considering everything I would need to do.<br />
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Two months later it's July and I got a phone call from the apartment saying there was a unit available and I should look at it so I could sign the lease. And just like that my excitement started its descent into a feeling of dread. I didn't have the benefits I needed. I didn't have my caregivers lined up. I didn't even know how to start the whole process. It was now or never on the apartment though so I took a deep plunge and signed the lease.<br />
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Like a fool I gave myself a few months to move out of my mother's house. I had no time or energy to let myself feel much of any. I felt if I got too excited it wouldn't happen. If I got too worried I'd crack under the pressure and never move. I've never done well with too many emotions. I suppose I like to suppress them until I know how to better handle them.<br />
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Now I've been in my apartment for a week and I want to be super excited because I did this. Ecstasy is the appropriate response to this transition in my life. I have wanted to live on my own for years. And we live in a society that tells us to to always be doing and feeling something. For a few months I haven't felt anything. I haven't even been able to write anything decent. But today I woke up and I felt something other than well controlled apathy. I felt wonder that I actually did this. And I felt gratitude to everyone that helped me with my apartment and who will continue to help me. And I felt like writing which is always a good sign. I'm sure that soon I will feel happiness and excitement again. <br />
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It's okay to feel nothing when everyone expects you to feel a whole bunch of something. Life goes by fast and sometimes you might need time to process all the changes. Just try not to dwell too long in the world of apathy for it is gray and life is full of color. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-12022855846512978192015-02-23T20:17:00.000-08:002015-02-23T20:57:55.140-08:00Don't be Crippled or Crazy but Act itAs a child I wanted to be an actress. I took drama classes and even went to those auditions one hears about on the radio. I taught myself to cry on command. I was committed to becoming famous, in fact sometimes I still fantasize about rolling down the red carpet. Acting wasn't just some childhood pipe dream but at some point I realized it would never happen for me. I had a speech impediment. I was never going to be conventionally pretty enough for Hollywood. And lastly, there was no one in the movies or on TV who couldn't walk.<br />
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Now I can fully appreciate the fact that art imitates life and the sole purpose of an actor's job is to be something or someone that he or she isn't already. What I can't jive with is the fact that actors with disabilities are almost never hired for roles but their “normal” counterparts are often given the greatest awards for portraying the lives of those not as physically or mentally normal. Oscars aka The Academy Awards are the epitome of success in the movie industry. I haven't seen “The Theory of Everything,” so I won't be reviewing that. What I know is Eddie Redmayne just won an Oscar for portraying part of Stephen Hawkins' life. I may not be an Academy judge but it's safe to say Redmayne won Best Actor because they were awed by the fact that he could manipulate his body to look disabled and perform as such. I'm not saying that wasn't a daunting and exhausting task but stay with me. <br />
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Today I read an article saying that actors who have done roles playing people with mental or physical disabilities almost always win the coveted Best Actor award. I find this extremely irritating because it's perpetuating a double-standard. I can't speak for everyone that has a disability, especially a mental disability. But what I can say is I live in a world that was not made for people like me. A world that has made me feel like a second class human more than once. I don't always think this way, I typically ignore it because I'm used to adapting but sometimes I can't help but notice the signs. When traveling is harder than it needs to be. When people intentionally or unintentionally ostracize me. When I can't get in a building or fit in the restroom. The list goes on and these are all signs that I live in a world that technically doesn't want me. Correction they want me but not my disability because my disability isn't pleasant or easy to deal with.<br />
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So, Hollywood I do wonder why do you ignore the “weak” in real life but reward your own for playing us? I'm not good enough to be an actress but my life is interesting enough to glamorize on the big screen, right? <br />
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<i>(Kudos to those with varying disabilities trying to make it on film or any other form of entertainment, for that matter.) </i>allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-55873028784719761612015-02-14T18:51:00.001-08:002015-02-15T12:44:47.820-08:00Let's Get Kinky: 50 Shades of Grey<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
Since everyone is talking about it I might as well too. 50 Shades of Grey. I'll admit that when I was 19 or so I read books. I liked them well enough but at the end of the day it's just erotica. The plot line and writing are mediocre at best. Everyone knows that the only reason this book got popular is because of the kink factor. </div>
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The older I get the more I see the flaws in this story. The author, E.L. James claims to have done a lot of research for these books but I don't see it. Now I I'm not a sex therapist but being that I've taken classes on the psychology behind sex and I read science based articles on every aspect of sex I think it's safe to say I'm pretty well informed on the BDSM subject of FoG. For those of you that don't know BDSM means bondage/discipline, dominance/submission, and sadism (you like to give pain) and masochism (you like receiving pain). </div>
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My first issue with this story is that it implies that everyone in the BDSM community has issues. In FoG the two characters, Mrs. Robinson aka Elena and Christian Grey, who are active participants in the kinky are pretty messed up. Let's start with Christian. He refers to himself as "50 shades of fucked up," that's a direct quote from the book. He was neglected and abused as a child and as he became an adult he realized that he liked being the Dom of women that looked like his biological mother. Gross, I know. But before he realized he was a Dom he was a hurt and confused teenager who couldn't even be touched. Mrs. Robinson was his adoptive mother's best friend. Mrs. Robinson made Christian her sub when he was 15 and they continued that relationship for several years. A painful or sexual touch became the only touches he could handle. He says she helped him but I say she raped him. </div>
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So there you have it: a victim and a pedo. And I don't know the exact statistics but I won't believe that everyone in the BDSM is either a victim or abuser. There are people that get into BDSM so they can abuse other people but that's not what the community is about at all. The foundations of the community are trust, lots of communication, and most of all mutual consent between adults which leads me to my next point. </div>
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Anastasia is a naive virgin when she meets Grey. Throughout the whole series on a scale of 1-10, 1 being vanilla, do it in the dark, missionary and 10 being kinky, dungeons and dragons, BDSM freaky Anastasia is a solid 6 and Christian is a 9 (in my opinion). By the end of the series her love magically makes them sexually capable (that deserves a post all on its own). But before she "fixes" him she repeatedly says how abused and scared she feels. I'd give you some quotes but someone was nice enough to do it for me <a href="http://magazine.good.is/slideshows/abuse-is-not-romance#0" x-apple-data-detectors-result="0" x-apple-data-detectors-type="link" x-apple-data-detectors="true">http://magazine.good.is/slideshows/abuse-is-not-romance#0</a></div>
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If Christian was a real Dom he would have been more respectful of Anastasia's fears and made her feel safe. The fact that he won't let her see her friends, monitors her means of communication, and stalks her are all the signs of an abuser. To put the icing on the cake he buys her something after almost every time he gets too carried away with the sadism. It's like an after school special on domestic violence. </div>
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As I said earlier I liked FoG well enough to read them all. I'm not going to berate the millions of people seeing this movie but I feel very ambivalent about seeing it and might not. If one only focuses on the sex and the budding romance without really thinking about any of it it's a fine story. But time and proper education can make you see many things under a different light and the complete misinterpretation of BDSM doesn't sit well with me. Besides the actor playing Christian Grey was supposed to look like sex on a stick and this dude does nothing for my libido, I digress. </div>
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Anyway, Fifty Shades of Grey is nothing but a fiction story. Read the book don't, read the book. See the movie, don't see the movie. But stop debating about it all over the internet. Just hope people will be smart enough to differentiate between fantasy and reality. </div>
allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-64183026348484832292014-11-26T21:29:00.000-08:002014-11-26T21:41:33.287-08:00Two Sides of Every Story Tonight my heart is heavy. Thanksgiving is just around the corner but it's difficult to be in the holiday spirit when the country is facing such a rough patch. Once again a black young man was killed and once again there will be no justice. The really sad aspect of this Michael Brown debacle is that I don't know anyone who was surprised by the jury's decision. <br />
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Prior to delving into this let me say a few things. 1. Thank you to all the police officers who do their jobs properly. 2. Not all white people are racists or ignorant to the struggles that people of color face. 3. Not all black people are thugs nor are they all innocent angels. They are simply people who desire to be treated with equality.<br />
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For those of you that don't know, my father is black and my mother is white. My mother raised me but she always wanted to expose me to my other half. While I do not look black and I consider myself mixed, being half black in America is the same as being full black. Now due to the color of my skin I have not had the same experiences that my younger sister (who has a darker complexion) has had with racism. Anyway, because of how I was raised I can see what's happening from both sides.<br />
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The general consensus from many white people is that Darren Wilson killed Brown out of self-defense. While I understand that cops are taught to defend themselves I wish they would use killing as a last resort. The more that comes out about the case the more that it sounds like Brown was not an innocent victim. I'm not even talking about his past run-ins with the law I'm talking about his last 10 seconds. Whether or not he was trying to harm Wilson did Brown deserve to be shot repeatedly? To me that is another sign of a police officer with some aggression. Does an unarmed person need to be dead for an officer to get control of a situation?<br />
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Black people are angry because they are seeing this situation for the bigger picture. Did you know that black people only make up 12% of the United States? Now combined that with the fact that black people comprise over 50% of the inmates in this country. After letting that sink in, imagine that your son or brother didn't have a weapon and was shot multiple times. All you want is justice or some type of acknowledgement of your grief. Instead the Supreme Court decided not to indict Wilson. The Grand Jury deciding not to indict almost NEVER happens. How would that make you feel if Brown was your family? <br />
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There's so much I want to say on this but I can't, I don't know where to start or end. The destruction that's happening in Ferguson is a shame but it's what happens when people don't know what else to do. There's so many different stories on what happened that night that I honestly have mixed feelings on the situation. But just from past incidents the concept of having a black son terrifies me and it shouldn't be that way. And even though the United States isn't as bad as it was 70 years ago there's still a race issue. That much is obvious from everything being said on social media. So this Thanksgiving I am going to say my thanks for the progress this country has made since it's conception but I'm going to pray for another leader like Martin Luther King. We are in times of change and we need leaders that can organize and unify us. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-32479447103041074432014-08-10T23:03:00.001-07:002014-08-13T19:17:10.478-07:00A World Without MeEugenics: the study of methods of improving genetic qualities by selective breeding (especially as applied to human mating)<br />
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People hear the word "eugenics" and they automatically think of the Holocaust or the sterilization of the poor, uneducated, colored, and or people with disabilities. That E word has a huge negative connotation because there's been people with God-complexes and their own agendas that did horrible things thinking they were improving the human race. Eugenics is a very ethically complicated subject. And whether we like it or not eugenics will one day lead to the eradication of most if not all diseases.<br />
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Since I was a little I've been told that one day there would be a cure for my disease, Spinal Muscular Atrophy (SMA). I was also told that if I ever wanted to have children I should have my partner get genetic testing. Around 1 in 40 people unknowingly carry the SMA gene and it takes two people with the gene to have a chance at having a baby with SMA. Since most carriers of the disease are unaware that they are carriers it never occurs to them to get genetic testing. If I decide to have children I could have my partner tested and if he wasn't a carrier there would be nothing to worry about. If he was a carrier then we would discuss our options such as adoption or selecting the egg and sperm that didn't have SMA. I want there to be a cure and I'm an advocate for genetic testing. However, not everyone with SMA feels the same about these topics.<br />
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(1. I respect that opinions about this are very personal and I'm not saying that anyone that doesn't agree with me is stupid or selfish or whatever. 2. One aspect of genetic testing is having your baby tested in utero and deciding whether you want to terminate or not if they have a disease. I'm generally against that. I'm only a proponent of preventing diseases pre-pregnancy.)<br />
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I was probably a teenager when I decided there wouldn't be a cure for SMA in time for me and I've accepted that. I still want a cure for future generations. Sure I love my life, it's been great, I wouldn't be who I am, or met the people I have without this disease. That doesn't change the fact that SMA is an AWFUL disease that robs people of their abilities and lives too soon. I would not wish this disease on my worst enemies. It takes a certain type of personality to truly thrive with a disease like this.<br />
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I was born a stubborn surviver. That isn't a personality trait life with SMA gave me. I don't know who I would be without SMA but I know my stubborn streak would still be in me. A lot of people with disabilities contribute all their good qualities to the adversities that their disease have put them through. I am not an angel or anything, there are parts of myself I need to improve. But sometimes I think that everything bad I've been through is the reason I have a great personality. Adversity adds character and all that jazz. Then I think about all my great able-bodied friends/family and realize I could still be an awesome person without this stupid disease. On the other hand, I've met some people with various disabilities that are horrible people. Good character and a functional body are not mutually exclusive.<br />
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As far as genetic testing goes, I don't even know if I want kids. Men have never been historically known as the caregivers in society. Of course, there are men that choose and love being caregivers but that's a little harder to find. As it is, whatever man I end up will end up being my caregiver part of the time. Assuming we can't afford a constant nanny he will also be a single parent in the physical aspect of raising our child. An able-bodied child typically won't need physical help for 18 straight years. A child with SMA typically will need that help for 18+ years. To me it would be extremely selfish to ask my husband to spend the remainder of his life being a caregiver for me and our child(ren). So yes my husband will be getting genetic testing if we want children. And it's not just my husband I'd be considering; if it can be avoided I don't want my children to have this life.<br />
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I wouldn't trade my life for the world but yes if I can I want to prevent others from this life and pain. I was emotionally bullied extensively in my later elementary school years. In 6th or 7th grade I came home from school everyday that year and cried due to excessive loneliness. I relinquished certain dreams because my body wouldn't cooperate. I watched my little sister hit milestones I never would and I had to teach myself to be happy for her. I've had countless guys reject me straight away or tell me I'm that I'm their "dream girl" but ultimately they couldn't handle my disease. I've learned to ignore the stares, whispers, and points from strangers in public. I lost my first, out of many friends at 13 because a disease killed them. And everything aforementioned is just the tip of the pain ice-berg. If I was a weaker person I would have cracked years ago. So no I don't want a stranger, let-alone my child to experience that. (By the way, the older I've gotten the more grateful I've become for everything I can/do get done. I've done a lot in 22 years. And now I am typically happy, but I don't want to sugar-coat things. SMA is not something that's always easy to live with.)<br />
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This is why I'm pro-cure and genetic testing. One day if scientists eradicate diseases there won't be people like me. But that doesn't mean the world won't have any unique or good people. A world without children that have bodies that waste away or are forced to become wise before their time isn't a horrible world. That's the plus side of eugenics.<br />
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(P.S. As I Christian I feel that God made diseases for a reason but I also believe he made technologies and Doctors that can discover treatments and cures, for a reason.)allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-6495299228241768762014-08-01T22:28:00.001-07:002014-08-01T22:28:33.267-07:00Great ExpectationsAs I turned 22 a few weeks and August is Spinal Muscular Atrophy (SMA) Awareness month I thought it was fitting to discuss expectations. There are literally millions of articles/blogs about SMA so I'm not going into great detail about it. There's a lot I could say about the disease but I'll just say this: not only does SMA steal muscles, but it also steals lives and certain expectations. My parents had anticipated a life of "normalcy" for me until the doctor told them I wouldn't live past the age of two. I've defied a significant number of negative and positive expectations.<br />
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Expectations are everywhere in life. Whether it's about yourself, your loved ones, your future or anything else you have these hopes for how life is supposed to turn out. If you're exceedingly lucky your future will unfold exactly as you desired but most likely it won't. Expectations are tricky because if one doesn't have any one might live a stagnant life that can't progress but if one has too many or too great of desires then they are just asking for disappointment.<br />
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Balance in this area has always been a struggle for me. As a child I was convinced that most of teenage and adult life would be almost like tv and the movies. Obviously, I would soon learn how disillusioned I was. That didn't change that fact that I had ridiculously high hopes for certain milestones and when they didn't go as planned I was often crushed. It got so bad that I started expecting the worst out of everything. That way if something good occurred I was pleasantly surprised. However, a mindset such as that is a very cynical approach to life.<br />
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For me life is best when I don't expect the worst but I expect nothing at all or keep my desires very minimalistic. Recently I went through an experience that would have broken my heart years ago because I would have wanted so much more. As it was though, I was able to see the whole ordeal for what it was: a necessary learning experience. I was only able to do that because I went into it not anticipating much.<br />
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And maybe that's what life is about: learning not to expect so much out of people, places, and things but learning that you can expect to learn a lesson in every good and bad thing that happens in your life. You can't expect someone you love to always be there. You can't expect your children to be exactly who you imagined. You can't expect to be financially rich. You can't expect an impossible future. But you can expect routes that deviate from your plans so adapt and learn from them because in life the expectations that are completely unexpected are the ones you can always expect (try saying that 10 times fast ;).allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-89483384411290749292014-06-23T21:39:00.005-07:002014-06-23T21:39:59.404-07:00Lonely but Never AloneI can completely empathize with being famous and lonely. When I was younger though, I couldn't. I couldn't comprehend how a person could be lonely when an entourage accompanied them day and night. In these last few years I've realized that I'm just like them sans the fame (I'm working on it) and the size of our entourages.<br />
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I'm never, EVER, alone. I've had nurses since I was 2 years old. In school K-12 not only did I have a nurse for my personal needs, I also had an aide to be my hands in class. My “alone time” has always consisted of me sitting on the toilet or sitting in my room but even then someone is in the other room. Once in a blue moon I get 5 minutes in the car to myself when someone has to get one item at the store. I can't take walks by myself. Sure, I can speed ahead but I know that whoever is with me is only 50 feet behind. I can't go to the movies by myself, which doesn't seem like a big deal because my nurses have to do what I say. However, I like to try to be a considerate “boss” so I will only go to a movie if they want to see it as well. I can't travel by myself, which is my biggest issue since I desire nothing more than to see the world. I can't ever have a day where I just want to be on my own. As a teenager it bothered me the most because being with an adult most of the time robbed me of my rebellious stage. I did and do nothing on my own.<br />
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I suppose that's part of the reason why I'm lonely; due to the fact that I always had adults following me I've never had many friends. It's one thing to have people spend time with you because you pay them but it's another to have people do it simply because they cherish your presence. Of course, people like(d) me. And all through high school a lot of people knew me and if asked they would attest to being my “friends.” Yet, I was never invited anywhere and when I made the invitations they bailed. I went to many school dances on my own just to prove to my peers I didn't always have an adult with me. I always did my best at night, as far as my health went, and I figured if I started having issues I could get someone to call 911. High School was very confusing for me social-wise though upon graduating I realized I might not have made any true friends in school but I had a few great ones from other walks of life. My real friends show up in the hospital when I'm ready to be seen, they check up on me just because or because I posted some subliminal emo status, they support my goals, and most of all they enjoy spending time with me. Even though I have great friends it doesn't take away from the fact that my social life doesn't even compete with that of my able-bodied peers and sometimes I feel super lonely. Yet, the older I get the better am at focusing on what I do have as opposed to what I don't. A small circle of genuine friends is often preferable to a gaggle of flakes. <br />
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Being lonely at times without ever being alone is a confounding oxymoron. For those of you that can be truly alone learn not to hide from solidarity but grow in it. And those of you in my shoes, that are never alone, try to find comfort in the fact that even though you might experience loneliness there's someone out there that doesn't need to be payed to be with you. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-82170488876157801082014-04-24T20:28:00.001-07:002014-04-24T20:33:32.265-07:00Being a Christian in the Real World I created this blog with the intention not to discuss religion too much. It's often a topic that I only bring up amongst friends. I feel like regardless of how one was raised, a person's spiritual walk is their own. I also feel like people get extremely agitated when talking about the prospect of an after-life for no reason. There's no 100% proof that the IS or ISN'T an after-life. Therefore, it truly baffles me when people get their panties in a bunch about the religious notions of others. I was not created to save the world, it's not my buisness what a stranger thinks is going to happen to him after he dies. As far as my loved-ones goes, shoving my beliefs down someone's throat isn't hardly as effective as minding my own business and living my life the right way. By doing a good job at life others will follow.<br />
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I was raised in the church. I accepted Jesus into my heart as a child, got baptised a little later. I did all the things a good Christian was supposed to do. However, the older I got the less connected I felt to God. My best friend was a lesbian. My mother was never married. I believed in Dinosaurs and eventually I bought the theory of evolution. Negative events kept occurring in my world and all I could think was, “If there's a god why do bad things always happen in my life? Why don't I feel him? Why won't he speak to me?” You know, normal questions.<br />
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It doesn't help that we live in a world that says one has to be an atheist or a religious fanatic. A proponent of science or a believer of miracles. A person who has fun or someone who stays at home and prays. Secular music or gospel. This extreme or that extreme. Either or. It's overwhelming and totally wrong.<br />
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I've always been in between the extremes. I don't think science and religion have to be mutually exclusive. Science has saved my life on countless occasions. I like to believe that God created science to help the world. I believe in intelligent design and evolution. I don't buy into the concept that homosexuals are automatically going to hell any more than I think divorcees are. As a Christian not only do I believe in God's wrath but I also subscribe to the belief that he sent Jesus to die for my sins.<br />
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Once I started going back to church and reading the bible I realized that I was not made to be perfect or pretend to be. Maybe I was just made to follow my moral compass, mess up along the way, realize I need God, love him and love everyone. This is what being a Christian in the real world (a non-Christian world) means to me: worshiping God, facing my own sins but not beating myself up over them (I'm forgiven), and relinquishing judgement to harvest love.allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-84792593277001719742014-04-15T14:52:00.001-07:002014-04-15T14:52:07.038-07:00My Most Recent Published Piece About 6 months ago one of my poems was accepted to be published by Breath and Shadow which is an online literary journal that caters to people with disabilities. Their next few issues were full but I was finally in this month's issues. Here it is http://www.abilitymaine.org/breath/spr14b.html and I'm pretty excited because they have about 1,200 readers. That means at least 1,000 more people are going to know my name. <br />
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Anyway, I wanted to give some background into this piece I wrote. It's dark. I wrote it a little over a year ago after losing two friends, within two months of each other, under the age of thirty. Needless to say I was depressed and for some reason I write my best work when I'm depressed. I don't like talking about my feeling thus writing them down is my coping mechanism. Looking at this poem now I don't even feel the same way about love but at the time it summed me up perfectly.<br />
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My feelings towards the concept of romantic love is ever changing. I guess I've always subconsciously believed in it because I'm a hopeless romantic. I might talk a lot of crap about being “mushy gushy” but at the end of the day I want to believe that somewhere out there the love between two people really can conquer all. There was a period of time I didn't outwardly believe in love. The divorce rate is approximately 50% here and couples in my immediate family never made it. And at 13 I just thought I was much too sensible to put myself through any of that. Then I grew up a little and I thought to myself “well I do believe in love but I'm never going to fall in love with someone who can't love me back.” Fast forward a little a bit and I realized there's absolutely no sense or logic with who the heart wants. You're extremely lucky if you're heart and brain combined falls in love with someone who loves you back. Honestly, I admire the people that never let themselves experience unrequited love. Finally, everyone once in a blue moon (mostly during hospitalizations) I think to myself “Do I really want someone to fall in love with me? I'm a grenade.”<br />
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I used the word “grenade” because I just recently read “The Fault in Our Stars” by John Green. It's an amazing book and I suggest everyone go read it. <u>SPOILER ALERT (not really): the female protagonist has a severe case of cancer. She's dying. And she really doesn't want to hurt anyone else when she dies. She calls herself a “grenade” because at any second she will die and everyone who loves her will be hurt.</u> Growing up with a terminal illness I know how easy it is to feel that way. Eventually though, you mature and you realize you may or may not die before your family and friends. The crazy thing about life is we are all dying. I've always had a number in my head but I try my best not to to think of it. Perfectly healthy people die every day in accidents. I love myself enough now not to consider myself a grenade. People who love me and the person who will fall in love with me know what they are getting into with me and I can't stop them. These people still love me regardless.<br />
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So now when you read my poem you know. I just didn't want people to freak out. I've actually been really happy lately. Happiness is a change I wanted to make with in myself so I'm doing it. But I'm an artist, I have my days. Remember the greatest artists in history were a little crazy. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-86477189414390866622014-04-12T20:53:00.000-07:002014-04-12T20:53:14.241-07:00A Poem for National Poetry Month 2014Better Than a Zebra<br />
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They say a zebra can't change their stripes<br />
Forever stuck they will be inside the confines of black and white<br />
You make the same mistakes over and over again<br />
Like they're repleting your livelihood<br />
When in actuality they deplete<br />
And before you know it all that's good has become a dump yard<br />
Left-overs and raggedy scraps rest peacefully<br />
Covering tarnished silver and dented gold<br />
Even further under the muck lies more treasures<br />
You don't see it<br />
But I do<br />
And I'm willing to pick through the unmentionables<br />
If we can use your dirty hands<br />
To put the them in the trash compactor<br />
In order for you to realize your pricelessness<br />
Only when your worth is a neon sign stamped in your vision<br />
Will you become who you want to be<br />
Then everyone that has imprisoned you in chain links of disbelief<br />
Will be amazed when you show them you're not a zebra<br />
But a chameleon <br />
<br />allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-28063171624812531602014-04-04T22:11:00.000-07:002014-04-04T22:11:37.283-07:00Naked men and sloppy boobiesI don't have it in me to wax philosophical about life today. Can't do it. What I can do is talk about last night. For those of you that don't know, last night I went to the casino to see the famous erotic dance group, the Chippendales. Now I love myself a real-life-Adonis as much as the next hetero-sexual 21 year old female. I expected to see all types of women because it was a free, first-come-first-served event. My expectations were proven.<br />
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I've never been to the average strip club with girls on poles but I'm pretty sure the men (and women) that frequent those don't act like bitches in heat. Hundreds of ladies, 21-70 years of age, lined-up outside the doors of the event room. Some of them were scantily clad and some could have put some better clothes on. Once we were all in there and the men appeared it was pure insanity. Don't get me wrong, I was screaming with the best of them. The men were putting on a great show and they were hot, of course I wanted to show support. However, that is the only similarity me and the other women shared. I was not drunk. I was not hoping the dancers would throw their perspiration soaked clothes at me. And I wasn't begging them to put their hands on me. I thought it was cute when they kissed me but realistically I wasn't expecting to spend the night with any of them. I wasn't %100 intoxicated by the pheromones they were emitting. <br />
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Maybe it's because I spent years on stage in high school but it's hard for me to over-look the fact that an act is just an act. I liked the show A LOT. It takes some massive balls (pun intended) to recreate sex acts on stage. It was fun momentarily fantasizing, but some of these women were seriously trying to take things backstage. Which is fine, but everyone knows half the male strippers out there are gay (I love my gay guys, don't take this the wrong way), the other half probably have significant others, and for the ones that don't have anyone I wouldn't want to add myself to their mile long list of conquests. Also, it was all an ACT, albeit a very scrumptious act, but an act nonetheless.<br />
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I've just never understood why females act bonkers over strippers. They are externally more beautiful than the average person but beneath the sculpted abs and symmetrical faces they are simply people. Females who lose their minds to men who perform just make all other females look ridiculous. I'm not saying don't go to strip shows. I want you to go and enjoy yourself with your girls but please control yourself. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-5863625371560327812014-03-26T22:07:00.000-07:002014-03-26T22:07:06.981-07:00Short & Sweet, I Need YouI'm sure most of you haven't noticed but I've been trying quite hard to write something worth reading every week. This will be my fourth post in four weeks. When I created this blog last year I knew that I wanted to write about everything and just really connect with my readers (as if I have thousands of readers, I don't...yet). There's countless blogs dedicated fashion, food, sex, love, music, et cetera. I could have stuck to one topic but I hate being put in a box.<br />
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Also, the thing is, creative writing has always been my thing. I like putting words together and making them flow in poetry. And I like creating new worlds in fiction stories because fantasy often beats reality. In high school there was an advice column that I wrote and not only did I have to write the advice but I had to make up the dilemmas because no one ever gave me any. Are you seeing a pattern here? I just like making stuff up and writing it down. Ergo, this whole blogging adventure is not my forte. <br />
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I have opinions about most topics, but it's exhausting trying to write something new and captivating every week. I've done the motivational, controversial, profound, and sexual post. In fact, my post about sex got the most views ever (so not surprising). I don't want to always discuss sex but I want to reach more and more readers. This is where you come in. If you read my blog tell me what you want to hear, er, read. I'll talk about ANYTHING. I really really want ideas. Sports, love, my life, religion, traveling, pop culture, anything, throw it at me. I'm serious though, let me know what you want to read about. I'm going to keep writing no matter what but I'd love some ideas.<br />
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You can leave those ideas here, Facebook, or Twitter. Thanks, I appreciate all the support! allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-60517131976617566652014-03-18T14:13:00.003-07:002014-03-18T14:13:44.049-07:00Writer of Dreams I believe that every decision I'll ever make, every person I'll ever meet, every road I'll ever traverse is drawn out on a map, penned in the galaxies. Whatever happens by the end of the race was meant to happen. Even if I don't know the reason I know that an event is never without reason. I believe in destiny, so to speak.<br />
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However, just because I believe in destiny does not mean I expect life to toss everything in my lap. I'm quite purpose driven. The entirety of my life has been spent making goals. In fact each hospitalization that I've had part of the reason I got through them is because I had some goal. My last serious hospitalization I was 17 and I wasn't supposed to make it. I remember saying in my head over and over again, “You can't die because you have to go to prom.” In retrospect that was kind of silly. I had more important upcoming events such as high school graduation or my graduation trip. But I was a girl that had spent my whole life dreaming about prom (not my wedding) and nothing, not even pneumonia and one non-functioning lung was going to deprive me of that night. Goals are what saved me.<br />
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As a child, I had aspirations of being the next Whitney Houston (minus the crack part), an actress on the red carpet, a dancer, a fashion designer, stuff like that. Then my disease kept progressing. I'm positive I was a famous stage actress in another life. Anyway, when those dreams were no longer viable I made new ones. To me, real life sometimes sucks if you have nothing to look forward to.<br />
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Many people think one of the biggest problems with my generation is that we don't believe the American Dream is alive so we just wait for our destinies to take shape. I think it's more than the elusive American Dream that stops people my age from going after their goals. I think most people are afraid of failing. They rather acomplish nothing than fail at something. The funny thing about that is the most famous people in the world experienced failures and rejections before anyone knew their names. The great thing about having aspirations is that no matter how many people don't believe in you they can't take your dreams. You're the keeper of your goals, don't pass out the keys.<br />
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And you don't have to have big goals, but have something. Make a goal to just be happy. Or to work hard so one day you can support your family. Or to travel more. Anything. If there's one thing I can't stand it's people who constantly complain about their lives but never do anything to change them.<br />
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I believe that my whole life is already written out, but I'm the co-author. Very little will happen if I don't set out and push the first domino. I want to look back on my life with few to no regrets. In order to do that I know I have a lot to get done.<br />
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So, are you contributing to the story of your life or are you just hoping it will all, magically, write itself?<br />
<br />allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-26384577489886188682014-03-11T16:09:00.001-07:002014-03-11T18:29:17.466-07:00Let's Talk About Sex, Me, and AssumptionsBefore I delve into this I want to say that I hate the whole hookup culture of my generation. Not saying I hate anyone that likes meaningless sex, just saying it's not for me. Religious ideas aside, sex is literally the closest you can physically get to anyone. The whole idea of sex is to momentarily be one with another person. I don't take that lightly. <br />
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Now many a misconception follow people with disabilities. The biggest ones in my opinion are that we can't be sexy and we are asexual. Both could not be more wrong.<br />
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Growing up as a female it was really hard on my self-esteem never seeing models that look like me grace runways or fashion magazines. On that note though, in recent months there have been two models with Muscular Dystrophy who have gotten recognition. One walked (rolled) the runway during New York Fashion Week and the other was a fashion blogger who got contracted with Diesel for a print campaign. The more that disability is brought to the media the easier adolescence for a lot of people with disabilities will be. That shouldn't be the way it is but I don't make the rules of society.<br />
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After my hormones kicked in full throttle I was pretty sure I was invisible to the opposite sex. I had made it all the way through high school without dating, surely I was completely undesirable. Then I started online dating and I realized what the problem was. One of the first questions almost every guy would ask was “Can you have sex?” At first I didn't get it. I had entered womanhood fully aware that I was capable of sex and getting pregnant. Why wasn't the rest of the world privy of this knowledge? I finally knew why I was I was never a prospect for guys in high school. Let's face it, high school is a time of raging hormones and when people are dating they expect some type of action even if it isn't full on coitus. Guys who knew me were more than likely too afraid to ask. Eventually I got so tired of answering the question online that I just stated it in my profile. Apparently that's what most people with disabilities who try online dating have to do.<br />
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Online dating has taught me a lot. I'm not invisible to men. I can be sexy. And most of all I have to communicate. (One day I'll dedicate a blog post or a whole book about my online dating experience. I have some pretty interesting stories. )<br />
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This is such an important topic to me only because sexuality is one of the pillars of human nature. EVERYONE has sex. Old people, I'm talking 80+ (kind of gross). People with disabilities. Homeless people. People who don't have feeling below their necks or waists (fun fact: people who can't feel their private parts will just find other trigger points for an orgasm). Transgendered people. People who look like they shouldn't be having sex are probably having it. Everyone has sex because sometimes being one with another person is the only thing that makes sense in this crazy world.<br />
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I wrote this because I can't stand assumptions. Able-bodied women and men don't have to say that they can have sex. I shouldn't have to either. My ability to have sex shouldn't be the deciding factor for anything but it is. That's the world we live in. And honestly I've spent my whole life trying to prove assumptions wrong. Why do we make assumptions about anyone?<br />
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People assume I'm innocent. They assume I can't have fun. They assume I'd make a horrible significant other and mother. They assume I spend my whole life in bed, for non-sexual reasons, obviously. They assume I'm not as bright as I am. Assumptions have become brick walls around me preventing others from starting many relationships with me, platonic or otherwise. And I'm not perfect I make assumptions too. But the best assumption we can make with strangers is that we are all just human, with human vices, desires, needs, and dreams. Don't let someone amazing pass you by as a result of assuming. allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-15393631580796386972014-03-04T13:50:00.003-08:002014-03-04T13:50:53.579-08:00The Key to Happiness Lately I've been focusing on happiness. At times, happiness seems to be an elusive enigma. I've always been relatively happy but my whole disposition has taken a beating the older I've gotten. I'm one of those people that builds ludicrous expectations up in my head then I'm crushed when real life doesn't live up to make believe. I watch too many movies and read too many books. 12 year old Allegra was sure senior prom would be a night of magic. She was sure high school would be just like <i>Pretty in Pink </i>and the likes. And of course, when she was 21 she'd be married and maybe start having kids. As I said before, ludicrous expectations.<br />
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It's funny in a Shakesperian-tragic way how life will ruin the hopes you make for yourself as a child. I've been heart-broken, bullied, used. And sometimes I just don't want to be “happy.” I'm most creative when I'm in one of my “I hate the world” moods. Eventually, hating the world loses it's appeal and I have to suck it up and move on with my life.<br />
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I genuinely want to be a happier person. Which begs the question where does happiness stem from? Money. Sex. Other people. Fame. If you seek out happiness among those things you'll be sorely disappointed. Money comes and goes. The richest people in the world are in and out of rehab. So obviously, while money and fame would be nice it's not best to expect happiness from those two alone. Then there's people who can't be single. This is a struggle for many people my age. I'm sorry but I don't want to rely on my significant other to quench my thirst for happiness nor do I want him to do that to me. That is a lot of pressure. Sure I want to be happy in his presence but I desire to know how to be happy outside of or in spite of him. People will leave you and break your heart but if you know how to be happy on your own moving on isn't such an impossible feat. Lastly, everyone knows sex is beautiful and amazing. A lot of people think getting laid on regular basis will make them happy. Those feel-good endorphins are only temporary, hate to break to ya. Sex will only make you happy until it doesn't. Until you fall in love and the other person doesn't. Until you wake up in bed with someone you wouldn't have hooked-up with while sober. Until you're super old and you have no game. Or until you love it so much you let it control your life and ruin relationships with people you truly care about. I may be young but I know the key to happiness is somewhere else.<br />
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I'm realizing happiness is a plant in the core of my being, it was just under all the rubble and dirt. Some people have the perfect chemical balance in their brains to be cheerful all the time. I am not one of those people. In order for me to become a happier person I have nurture that plant inside me with some TLC, as corny as that sounds. It's not easy and it will take a lot of work on my part. If I felt so inclined I could let my happiness wither and die. But I don't want that. Up until several months ago I was looking for joy in places that I knew it wouldn't be discovered. All along it was inside me. I have talents and I have great people in my life now that I've relinquished a few that were bringing me down. And I've been waking up and thanking God for everything great in my life. I have a feeling that by making gratefulness a habit, surrounding myself with positivity, and cultivating my gifts that flower inside me will blossom. Sooner or later I'll have a colorful garden of bliss that no one can destroy but me. (That last line was so peppy it made me wince. But hey, I'm trying.)<br />
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May you find that plant somewhere inside yourself! allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-84870096813855393252014-01-08T23:03:00.000-08:002014-01-08T23:32:25.306-08:00What is time?[I'll preface this post by saying I suck at blogging and NEVER know what to write. I haven't posted anything in a long time because I've been working on my poetry and novels. It happens to be a new year though, so let's give this another try.] <br />
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I love time. I detest time. I wish I had more of it but I don't want an infinite supply because then I wouldn't appreciate it. The beauty of time is the scarcity of it. The concept of time occupies my mind more than that of the average 21 year old. But I'm not average and that gives me wisdom. Wisdom in turn, is my double-edged sword. I feel blessed with wisdom. I feel cursed.<br />
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A few days ago Muscular Dystrophy robbed another friend of mine of life. He was one of the most genuine, kindest men I ever had the pleasure of knowing. He had the sageness of a man twice his age and the humor of someone who loved life. I've known him forever (when I was young our few years age difference felt insurmountable) but I just started getting close to him in the last few years. It's one of the best decisions I've made.<br />
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Unfortunately, I've loss too many friends, all under 30, at the hands of MD. The worst part is my heart has been broken by so many deaths that when I learn of a new one I experience numbness. It thaws eventually but still. Even worse, death doesn't surprise me any more. I've shut parts of myself off because I can't handle letting anyone else in and having them leaving me because of death or otherwise. However, my friends that have passed, they'd want me to keep loving. It's a persistent internal fight for me to remind my heart to keep loving. Stay open, stay beating. <br />
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My friends have taught me what time is. It's moments in the presence of loved ones. It's doing what makes you happy because in the end does it matter what the world thought? I'm not a patient person, I guess because when I seek it I see my clock ticking. I see the minute hand gaining speed like it's faulty. I get obsessed with thoughts of the future when all that matters is now. I have to work on being patient and appreciating all that is now. Tomorrow is nothing but a tease that will never pull through. Time is now. Literally.<br />
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Half of what I do with my time, I do for my friends that aren't with me. I love because they loved. Hate is a virus that thrives on time and energy I don't have. I laugh because they laughed. I keep living because life does not revolve around death. To waste what precious time I have left is a disgrace to the memories of those I've lost. If they had one one more day, hour, they wouldn't have squandered it. They don't want me to squander it. <br />
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Everyone is born with a clock that has a number of predetermined ticks. Tick. Some people have more. Tick. Some people have less. Tick. What is time to you? Tick. Do you make the tick of your clock worthwhile? Tick...allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0tag:blogger.com,1999:blog-3489104252552158176.post-242781778637495892013-04-17T18:20:00.001-07:002013-04-17T18:41:34.592-07:00I WonderIn light of recent events I've wondered what it would be like to grow up in the America that my Grandma or even my Mother grew up in.<br />
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I was born in 1992 and the first mass murder I remember happening was 9/11 in 2001. My world has never been quite the same since then. I can't remember the last time I went to the airport without getting a pat down. And when it comes to extremely large crowds sometimes I wonder if I'm in an area that's about to get bombed or shot up. Morbid, I know. Although 9/11 is the first one I can recall, the really sad part is all this stuff started happening when I was 3 years old, with the Oklahoma City bombing in 1995.<br />
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One day there's going to be metal detectors in every school, heightened security at every movie theater, thousands of police officers at every event simply because everyone is scared for their safety. If I have kids they will never know how it feels to leave the house and not have to worry if something bad is going to happen to them. When I hear my elders reminisce about their younger days I envy their youth because that security they felt is something I haven't known for years. The innocent years that every child deserves are being shorten because certain people are going off their rockers and trying to kill hundreds at once. <br />
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That type of murder is not normal. I don't know if it's a nature versus nurture thing that's making people lose it. Nature being the fact that our air is more polluted than our ancestors' air and there's harmful chemicals in a lot of food now. Nurture being that sometimes really messed up people decide to spawn when they don't want to care for anyone. Or if it's because the media makes every person who goes on one of these killing rampages instantly famous. But what I do know is this country is suffering from a mental health crisis and maybe the government should be looking at more than just gun control. I'm not going to ramble on about guns (that'd take up a whole different post) but I will say that guns should be harder for the wrong people to get hold of and nobody should have guns that were designed with wars in mind. This is America though, so if the government were to try to take away everyone's guns it probably would not go over well. That being said, bombs have started their fair share of the tragedies in this country.<br />
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I honestly think the main issue here is mental health. I have many family members that deal with with varying mental health issues and I can fully appreciate how hard it is to talk about. As a country we shame, mock, and make light of these problems that people live with, when we really need to make people feel like help is more accessible and less taboo. I'm not excusing the horrible crimes of the people who blow up and kill countless other people (let's face it, some people are just pure evil and will hurt others no matter what) but I can't help but wonder: would all these tragedies still have occurred if the person(s) committing them had gotten help before they reached their boiling points?<br />
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America has become extremely focused on I and Me. Maybe it should become more focused on We and Us. Maybe when we ask someone how they are doing we should actually mean it. Maybe when we know that one person who seems disturbed we won't avoid them but try to get them help. Maybe over time we can start reducing how often these mass homicides take place. <br />
<br />allegrahttp://www.blogger.com/profile/06803266262848974157noreply@blogger.com0