Where have you been? What's going on? And a somewhat related disability rant...

Several readers have been asking why my blog has become so neglected, so I thought I'd have a slightly longer answer than "I'm sick."

In Fall 2011, I was in my first term in graduate school (public policy) thinking that I was at the end of the road in terms of treatment for lyme disease, babesiosis, and ehrlichiosis. I had been sick since middle school and in a treatment that was going on three years, so I was really ready for all of this to be done. (For more details about this time, read my "Lyme Journal" series). I had several blood tests with great results (the "good" numbers increasing, the "bad" decreasing) and I was feeling much better than I had ever remembered. By January of 2012, I was doing two-hour cardio sessions and out-lifting the muscular guys populating the weight room on campus. It was fantastic and immensely exciting, but it didn't last long. By the end of the next month, I couldn't stand for more than a few minutes without fainting. I was hospitalized for a short time and spent the next three-or-so months being drugged out of my mind. I developed optic neuritis, and for six weeks, I had vision problems that eventually turned to near blindness before it went away on its own. A couple months after that, I started developing heart issues and an intense, widespread burning pain that I hadn't felt since I was treating babesiosis. And as I've recently found out, babesia wasn't actually killed off and it has built up again. Today, my heart issues seem to have lessened a bit, partly, I think, through the new treatment I started about two months ago and efforts I've made to limit exertion. My pain has returned to that maddeningly-intense level where I'm either crying or screaming out in agony, or I'm falling asleep because my mind can't seem to handle that level of pain for more than a few hours at a time. I'm back living with my parents and I struggle to find the energy to cook myself simple meals. I still can't figure out a logical reason for why my health seemed to completely fall apart after so much progress, but I'm doing everything I can to build things back up.

So why have a stopped blogging? Part of the reason is that I'm not doing well and have chosen to spend my time finding new things to watch on Netflix or watching as many sports as possible. On occasions that I wanted to write, I've had times where it was just too painful to type. Other times, I'd notice the mental effects of drugs or the disease and have been too worried about posting something stupid or poorly written, so I have several unpublished drafts that I should re-visit (titles: white privilege and social activism, dating while disabled, why anti-choice?, ...).

And I've avoided writing about lyme stuff because, while there are people curious about my mental and physical health, there's only so many ways to say that sometimes this fucking sucks. Or that I've had a setback for the billionth time. I don't really want to be saying the same things over and over. Just like I was feeling during my last medical leave from school, I'm tired of watching friends move on with their lives  -- getting "real" jobs, having children, moving to a new place for an exciting job or life opportunity -- while my entire life is in stasis. It was uncomfortable to return to OSU the first time around. Everyone I knew had graduated and moved on... I'm guessing I'll have a similar feeling when I head back again (whenever that will be). I've also avoided writing about these things because I appreciate the times when I don't have to think about it... though with the awful pain and the inability to function normally, it can be hard to actually focus on other things. It's a part of virtually every part of my daily experiences. I'm so tired of feeling like my mind is imprisoned by a body that sometimes cannot handle the most menial of tasks. I'm tired of being that person who's stuck dreaming about being able to play basketball again, going for a run, and being able to do all the other physical activities I used to enjoy so much. I deeply miss and crave for that rush of endorphin's (the "runnner's high") I'd get after a good workout. Everything about lyme and babesia is just so depressing. They've taken away so much. I'm worried that I've run out of luck and that the next scary situation won't turn out so well. I'm not ready for my life to end any time soon, and I don't want to have to leave my friends and family with the pain that would come with all of that.

I'm also tired of the fact that I've been at a point recently where whenever someone tells me that "God has a purpose/God only gives you what you can handle/there's a greater reason for your suffering that you'll be grateful for," or things like "stay positive, that's the only way you can get through this," I really just want to say: FUCK YOU. Of course, I know that people who say those things are thinking they're being kind, but I feel that fuse between the appropriate response and what I really want to say is shrinking. There are times I just want to shut myself off from the world.

One of the things I learned with being born disabled is that people say a lot of things either to make themselves feel better or to give you a compliment that's really the farthest thing from one: ("Clearly, God put you here for us to learn from," or "You must be really strong, I'd kill myself if I was like you"). And the appropriate thing to say, since most people aren't intending to be stupid or cruel, is something along the lines of "thanks" or some generic "I'm glad for X" statement. But of course, what I'd really like to say is, "Fuck you. I'm a full human being. I'm not here to inspire you to be happier/more comfortable by realizing your life is better than mine."  Or "you're essentially saying that my life isn't worth living. What the fuck?!" Now, of course, it would be great for me to use these situations as a learning experience to educate the non-disabled person so that the next disabled person they interact with doesn't have to receive the same asinine comments. But that's much more difficult than people realize.

When you're having a short conversation with someone, like a conversation on a bus or while standing in the checkout line, there isn't often the time (or energy) to educate. So we're left with a choice: Do we say something close to what we want to say? Or ignore the issue(s), move on, and feign a smile and say something kind. Because when you're part of oppressed group, your actions invariably affect how others in the group are seen and treated. When meeting a non-disabled person, it doesn't take me long to figure out if you've had many interactions with people like me and what you've learned or seemingly misunderstood in those previous interactions. Sometimes they make it easy with comments about how shocked they are to see me so happy/accepting of my disability and/or able to "rise above it" because others have not. This a tough situation because I don't necessarily want to suggest that there's right or wrong emotions to have or that other disabled people can or should be able to do what I can do. (The super-crips stereotype is far too commonly perpetuated and is problematic in so many ways). Just because I can do something without help, it doesn't mean that there's a flaw in another's character for not being like me. And I feel a lot of pressure to address these issues. But it's like telling a ignorant, defensive white person that their comment was racist. It's not fun, it's hard to do in a short conversation, and it's really easy to mess up without the right amounts of time, energy, and patience. As great as it would feel sometimes to call someone an asshole and tell them to fuck off, I know that because disabled people are a small and misunderstood minority (sometimes it feels like non-disabled think we're all completely incompetent), showing anger, sadness, or frustration can be read as a "bad cripple," which can affect how that non-disabled person treats the next person (like assuming that person will also be the angry, not-well-adjusted-to-society cripple that I came cross as). It can also affect how they decide to be for or against adding accommodations, government assistance programs, etc, because "angry, not-well-adjusted" cripple is one of the ways people use to be against public accommodations or other help (ie: if he or she could just be happy/accept their disability, and be like Oscar Pistorius, we wouldn't have to make accommodations). Sometimes it is hard to know what to do in a situation. If a situation really hurts, I have a very short window of time to think about how to react. Like the times people talk loudly and slowly to me, as if missing half of my right arm means that I have a mental disability.  Or saying that I shouldn't have children so they wouldn't turn out like me. Or that it's a pity that I'm disabled because I'm so pretty/smart/normal otherwise. Or the guy I had a blind date with who told me I should sleep with him because he was kind enough to be seen in public with a cripple. I've had enough practice with these kinds of situations to stay calm and collected enough to say something that will hopefully dissuade him or her from saying something similar to another disabled person.

Depending on the number of offensive comments or questions I get in a particular time period, it can be mentally exhausting. I've developed a thick-skin and a great deal of patience over the years, but there are times when it is incredibly difficult hold back tears or anger in order to say something reasonable. In times when I'm in excruciating pain, unable to walk, or whatever, being told that "God has a plan/God is testing you for something greater/If you just came back to the faith, God would heal you," I have to constantly remind myself that this is actually coming from a place of kindness because they truly believe in a loving supernatural being who is in control of everything, so he must have a great plan in place for letting me struggle. And remind myself, "Don't call them an Asshole." In these moments I have to decide: Do I have the time, energy, and a willing participant to attempt education? Do I go for diffident kindness and hope to not square myself too tightly with the "good cripple" stereotype? Will my seething frustration lead to me into saying something that is too-obviously snarky and counter-productive? So even though I often feel the need to take the diffident kindness route and feign a smile and eek out a "thanks" or some other meaningless platitude, it still hurts. These sorts of comments add up, like tiny papercuts building over time. There are days when I don't want to go out in public, visit with certain people, go on Facebook or read blog comments on particular subjects because I've already maxxed out the number of comments and questions I can take with saying something I shouldn't. It's like this scene from Gilmore Girls:

Lorelai: "Michel, the phone." 

Michel: "Mm-hmm, it rings." 

Lorelai: "Can ya answer it?" 

Michel: "No, people are particularly stupid today, I can't talk to any more of them."

Sometimes people are particularly stupid and I'd rather take a break from it all.

Anyway, the point of all that is to say that there's a lot going on, which isn't necessarily obvious. I've partly eschewed blogging, and have sometimes been an infrequent facebooker and presence in real life because things are tough. My body doesn't always work right. My fingers can stiffen and make it tough to type, and my eyesight can decide to be blurry, or present enough visual disturbances for a few days at a time that it is too difficult to see my screen enough to type or write. And sometimes my mind seems to have issues processing new information and accessing old information, so I can't make the kind of connections I need to to understand what I'm reading and coherently state what I want to say. Consequently, it can be a lot easier to just watch something on TV. Other times, I have my Michel moments where I must avoid the world for a while.

That being said, I'd like to get back into regularly blogging about a variety of topics. My mind seems to be functioning better as of late, and I've been reading a lot of things that would be neat to discuss and expand on. As I mentioned earlier, there are a few drafts I'll look through to see if anything is worth posting. Either way, I have a few questions from readers I'll be answering which will (hopefully) get me back into the habit of blogging regularly. If you have a question or a some kind of topic you'd like to see me address, feel free to send me an email: saragwin (at) gmail.com. Be on the lookout for posts on why I like the MLK Jr. Vietnam War speech enough to reference it in my blog's title and mission, the lyme disease controversy, a bit on my religious upbringing and its effects, and a discussion of the social commentary around drones used in the TV show, Homeland.

On marriage equality and Biblical illiteracy

A few weeks ago, I heard something on "Up With Chris Hayes," that made me laugh out loud. There was a segment in which the panel had a discussion on whether the Vatican would ever support marriage equality. One of the guests, Michael Brendan Dougherty (politics editor of Business Insider), a Catholic, had this to say about why pro-gay (or at least not anti-gay) readings of the Bible are flawed:

"There's no way around what we call the deposit of faith, the scriptures, the traditions. The prohibitions are so clear, attempts to read around them, like the sin of Sodom was inhospitality, or St. Paul really isn't authoritative in this letters just don't work. And the generation of prelates within the Catholic Church that were trying to do this are dying, like today. The progressive movement, which I might call dissenting from church doctrine is losing all its steam." (See the full video here.)

Now I can't speak to the degree that the Catholic Church is squashing out views that run contrary to the belief that God hates homosexuality, but I can speak to the notion that "the prohibitions are so clear" that the Church could never come around to supporting homosexuality.

What specifically made me laugh was the idea that the story of Sodom and Gomorrah was so clear about the evils of homosexuality that alternative readings, like that the sin of Sodom was inhospitality, is merely an attempt by progressives to "read around" the clear prohibitions against homosexuality. Now this view isn't limited to Catholics; it is also common among conservative Protestants. The Sodom and Gomorrah story is often cited as a prime example for why God dislikes homosexuality. Under this belief, the story of Sodom and Gomorrah must go something like this:

The city of Sodom had been overrun by the disease of homosexuality. When a man tasted the flesh of another man -- consensually or not -- the Devil would take complete control of him and turn him into a homosexual zombie who lived for nothing else but gay sex. These homosexual zombies would leave their wives and children, their jobs, and everything else of importance in order to feed their insatiable desire for man meat. When there were no heterosexual men left in the city to turn, they all stormed the house of Lot to gang-rape two male visitors. Lot, the valiant man that he was, stood up to the mob to protect his guests. At this point, God had had enough of these homosexual zombies. He angrily boomed out a monologue decrying homosexuality and reiterated that heterosexual sex was the only acceptable form of sex. Afterward, he sent down fire and brimstone to exterminate all the homosexual zombies. He saved the life of Lot and his family for his willingness to stand up to the evil mob.

But the reality is, the passage isn't that clear. In Genesis 18, God notes that "²⁰The outcry against Sodom and Gomorrah is so great and their sin so grievous ²¹ that I will go down and see if what they have done is as bad as the outcry that has reached me. If not, I will know.” No explanation for the sins described to him by others is spelled out. Abraham goes on to plead with God to not destroy the city because He would be killing some of the righteous along with the wicked (verse 23). God makes a deal with Abraham: If 50 righteous people exist in the city of Sodom then He will spare the city from his wrath (26). Abraham pleads further and talks God down to 10 (27-33).

Now for God's test. In Genesis 19, God sends down two angels disguised as men to visit the city. As they entered, they were met by Lot who implored them to stay with him instead of the city square (their original plan) (1-2). Shortly after they went home with him, "all the men from every part of the city of Sodom —both young and old—surrounded the house" and demanded that the guests come out so that they can have sex with them (4-5). Lot said he would not let the men out for they were under his protection. However, he offered up his two virgin daughters for them to use however they'd like (6-8). But the mob of men didn't want the daughters, so they persisted. The angel-men told Lot to take his family and leave (12). As they left, God rained down "burning sulfur" that destroyed Sodom and Gomorrah (24). As Lot fled with his wife and two daughters, his wife looked back at the slaughter and was turned into a pillar of salt (26). When Lot and his daughters were far enough away from the destruction, they found refuge in a cave. At this point, the daughters got their father intoxicated, raped him, and both become impregnated (30-37).

When I first read this passage as a pre-teen, my initial reaction was: WTF?! I knew that this passage was supposedly about the sin of homosexuality and represented why we (as Christians) were supposed to hate gays, but I wasn't sure why homosexual rape made consensual homosexual sex evil and wrong. And the passage didn't paint a clear picture about the sins of Sodom, except that all the men wanted to rape these visiting angel-men. The reader is told that there was so much sin going on that God needed to investigate what was true and what was not, but there were no specifics (Genesis 18: 20-21). So how can readers be sure that this passage was intended to say that homosexual relations of any kind were wrong and worthy of genocide by God? And as a girl, I was bothered that Lot wasn't reprimanded by God for offering up his daughters to be raped. So homosexual rape is awful, but heterosexual rape is OK? Now, of course, I had also been reading numerous other parts of the Bible where the rape of women was good in God's eyes if the the rapist agreed to marry her (thus saving her from being put to death for being a non-virgin) (Deuteronomy 22:28-29) or if they were raped as a weapon of war (Judges 21: 10- 24, Zechariah 14:2, Isaiah 13:16). So even though I thought rape was wrong, God certainly didn't.

Then there is the part about the daughters raping their father because there were no other men around. Are we supposed to believe that they could remain virgins back in Sodom, but after they missed out on the chance to get gang-raped they can no longer ignore their desire for penis and must rape their father? God, who is in the area murdering sinners, doesn't reprimand them and the sons born out of it go on to become important leaders of nations (Gen. 19: 37-38). And God is supposedly against incest (Lev. 18: 6-18).

So what we know from reading this passage is that homosexual rape and looking back at genocide is bad, but offering daughters up for gang-rape and raping a father are OK. And if we accept what conservative religious people suggest, then what this odd and confusing passage really means is that God clearly hates homosexuality and everything else is beside the point. Nevermind the fact that there is nothing to suggest that God is making a blanket condemnation of homosexuality. This is the passage where "the prohibitions are so clear," as Dougherty puts it, that we'd be attempting to "read around them" by believing the sins of Sodom may be inhospitality instead of homosexuality. We're also supposed to ignore the fact that Ezekiel 16:49 says "49 this was the sin of your sister Sodom: She and her daughters were arrogant, overfed and unconcerned; they did not help the poor and needy." Isaiah 9-17 declares that it was meaningless for the people of Sodom and Gomorrah to offer animal sacrifices, celebrate and thank God in festivals, or pray when they did not "Learn to do right; seek justice. Defend the oppressed. Take up the cause of the fatherless; plead the case of the widow." In the New Testament, Jesus declares that Sodom's sin was inhospitality (Luke 10:10-13). The sins of Sodom are also referenced in Isaiah 3:9-15 and Jeremiah 23:14 -- both of which, like the other three mentioned above, fail to mention homosexuality as the only sin -- or even a sin -- of Sodom.

Perhaps conservative Christians are right. Maybe God was actually suggesting in Genesis 19 that the sin of Sodom was homosexuality; He just failed to clearly state it then and chose not to mention it later when He elaborated on it in other passages. Readers of the Bible are actually being tested on their ability to read into His vagueness on the specific sin in Genesis 19 so that when He gets more explicit later on, we're supposed to know that these are merely obfuscations to test whether we really read between the lines and got that homosexuality is the big, scary, singular sin of Sodom. Or at least that is what conservative Christians who cite Genesis 19 want other Christians to believe.

So this idea that "the prohibitions are so clear" in passages like Genesis 19, seems entirely ludicrous to me. Clearer passages on the sinfulness of homosexuality would be:

Lev.18:22, "²² “‘Do not have sexual relations with a man as one does with a woman; that is detestable," or Lev. 20:13, "¹³ If a man has sexual relations with a man as one does with a woman, both of them have done what is detestable. They are to be put to death; their blood will be on their own heads." 

However, even those passages are even less clear when one considers the other things God lists as "detestable" or an "abomination" in the same passages. These include not observing the Sabbath (Lev. 19:3, Ex. 31:14), the eating of shellfish (Lev. 11:10), wearing mixed-fiber clothing (Deut. 22:11, Lev. 19:19) or getting a tattoo/marking one's body (Leviticus 19:28) -- things that most Christians no longer regard as sinful. Further complicating the clearness of these verses is the fact that these were written as part of a Holiness Code that was created to set followers apart from the culture they were living in. Pagan worship was widespread, as was ritual sex acts (both heterosexual and homosexual) within fertility temples. Perhaps since the passage also condemns other things done within the context of pagan religious practices, it is merely condemning male-on-male temple prostitution and not homosexual relations outside of that.

There are three other passages (aside from those mentioned above) that anti-gay Christians cite as a way to defend their beliefs: Romans 1:26-27, 1 Corinthians 6:9-10, and 1 Timothy 1:5-10. They may be just as"clear" as God's commands to kill non-believers or believers of different gods (Deut. 13: 6-10, Ex. 22:20, Deut. 17:2-7, ...), the numerous verses condoning slavery (Lev. 25:44-46, Ex. 21:2-6, Ex. 21:7-11, ...), the condemnation of mixed-race marriages (Deuteronomy 7:3-4 , Nehemiah 13:25, Genesis 28:1, ...), and many other things we find abhorrent in today's culture. Not many denominations -- even those claiming to be "Biblical literalists" -- would call any of those things moral or believe that following those teachings are something God really wants. It seems Christians either say that God revealed new opinions to his prophets/religious leaders, or they ignore the verses and pretend like they aren't a part of their holy book.

The Vatican is still engaging in abhorrent behavior like denying the scientific consensus that condom use can help prevent the spread of STIs in HIV-ravaged countries, and is continuing to actively protect pedophile priests from prosecution around the world. But they are no longer fighting interracial marriage or claiming that it would be OK for the U.S. to take Africans as slaves again. Christians pick-and-choose what parts of the Bible to accept, particularly when cultures change and our moralities evolve. So this idea that Christianity can evolve on things like slavery and interracial marriage, but not on the acceptance of gay lesbian people, feels disingenuous knowing the history of the religion. It's absurd and cruel to think that we've evolved to allow heterosexuals to follow 21st century morality and dispose of the Bronze Age morality advocated in the Bible, but claim that homosexuals must continue to follow what was laid out in the Bronze Age. Whether or not the Bible seems clear in its condemnation of homosexuality during a cursory reading doesn't really matter -- Christians can ignore those passages just like they do with many of the other disturbing things in the Bible. And perhaps if believers actually read the Bible -- and not just the parts religious leaders cite -- homosexuality, with its limited and confusing mentions, wouldn't feel like the big, giant sin it is depicted as now by conservative Christians. So if Christians can change God's opinion on a myriad of other issues, why not homosexuality? Religion is, after all, what adherents define it to be.

My Lyme Journal: Volume 10

    I haven't written about my health in a while for a lot of reasons. I started my graduate program in public policy last September and haven't had the time or desire to blog about anything because classes and other responsibilities were physically and emotionally draining (but ultimately intellectually exhilarating and well worth the drain on my free time). Also, my health was steadily improving and I was feeling more and more of what I remember as "normal." I was enjoying that change offline and was looking forward to the end of treatment which seemed like it was finally in sight after 3 years. However, I had an inexplicable and dramatic relapse that left me too angry, frustrated, and a bit depressed to really talk about it online or off. And there were a number of cognitive issues developing that left me feeling like I couldn't coherently write anything that wouldn't cause later embarrassment. I still feel a lot of the same issues now, but I know that I should be honest about what's going on for my family and friends who want more than a fake smile and platitudes, and for those online who may be dealing with similar issues who are looking for reassurance that they aren't alone. 

     Back in January, I was feeling like I was nearing the end of this sickness. My bloodwork showed a big jump in my t-cell count and the disease was diminishing. Most notably, I felt the difference in my everyday life. I was still dealing with chronic pain, but it was lessened. I had more energy and ability to do basic things like cook food, walk to classes, and attend social gatherings -- things that had been a struggle earlier. Beyond that, I was able to lift weights and do other gym workouts without the intensifying pain, weakness, and exhaustion that used to make working out more of a risk than a benefit. I could finally workout and reach that great "high" I had been missing out on for so many years. In what feels like a previous life where I loved being active, these experiences were a reminder of those fading memories and I felt like I was truly re-capturing parts of the real me that have been trapped and progressively buried deeper as the disease worsened. I was so excited by the position I was at and even more excited by what could develop in the future.

     Then things went off the rails. I started having more intense migraines that came daily and wouldn't end with migraine medications. I normally have two kinds of medications for the once or twice a month migraines I used to have, but I was given prescriptions for six others in the hope that something else would work. None helped. I mostly stayed in bed because I was so nauseous sitting up or standing that I'd vomit shortly after. Even worse, I was so dizzy and unstable on my feet that I'd pass out if I stood for more than a few minutes. After a second trip to the health center on campus for a Demerol injection, I was advised to go to the emergency room for an MRI because of how new and debilitating my migraines were. The MRI came up normal, but my heart rate was in the 40s, so I was kept for three days where I was tested for a million things that might explain what was happening. By the end of that, I had no answers, but I was stable enough to continue bed-rest at home. I was told to stop all my medications and was given Neurotin and Dilaudid to tide me over until I could meet with a neurologist a week later. After several appointments, I had worked up to a high-enough dose of two anti-seizure medications that I'd take twice-daily to mostly control the migraines. Unsurprisingly, I was missing classes and was unable to keep up with readings and assignments. I took incompletes in those classes and decided to take a medical leave of absence for spring term.

    But in this process, everything else seemed to get worse. I stopped my treatment because I was told to leaving the hospital and I stayed off it in for the next 3.5 months partly because I wanted to believe that these new migraine attacks were completely unrelated and weren't part of yet another setback. In a few short weeks, I was feeling like I had reverted back a couple years. I can feel my mind slipping and I can't help but worry about what damage will be permanent. I know I'm having a harder time processing and understanding new information. I still read a lot, but more and more often I have to re-read sections and sometimes I just have to save it and try again later. It feels as if my mind is an expansive room with rows of shelves filled with files where bits of knowledge are tucked away in different places and each file may direct one to related files, which can lead to a bit of zigzagging and stops at different files to access all that is needed. My brain feels like it is both slow in finding a file and then slow in the jumping around to find others -- and sometimes just not able to make that first connection at all. I'll read something and know that I have prior knowledge of it, but I just can't seem to access it. Sometimes I'll be reading something that feels vaguely familiar and realize by a note or bookmark that I read it yesterday. Even worse, I've noticed watching television shows that sometimes I won't remember what happened 20-30 minutes ago and struggle to understand what's going on. And I'm left feeling like, if I can't make sense of what's happening on some serialized show, how can I go back to being a student in the near future? 

    In addition to the mental effects, my body has grown weak and I often have trouble standing without help. Every minuscule activity from taking a shower to trying to cook a quick meal can be absolutely exhausting. Some mornings I can't handle standing the whole three minutes it takes for my oatmeal to cook in the microwave. My vision feels off in a lot of ways: blurry, odd colors/other visual disturbances, and sometimes I experience double-vision. My eyes also hurt -- even more if I move them right or left -- and if I touch my eyelid. Every part of body aches in some way whether I move it or not. My fingers ache and are stiff to move, which makes typing painful and slow. There's the intermittent shooting and stabbing pain in my back and legs, and the re-emergence of the burning pain that periodically intensifies but never stops. I had this pain before and was incredibly relieved when it went away. But now I can't help but be as frightened as I was then because this level of pain is absolutely overwhelming and I don't think I can handle it much more. For the most part during the years I've been sick, I've handled the chronic pain well. I've avoided the regular use of opiates or other painkillers and I haven't sunk into the depression that is common among others. I've long had a high tolerance for pain and can usually fake being OK around friends and family, but this level of pain is too much. I've been crying more than I have in years, screamed out in pain on several occasions, and had a moment-of-weakness during one maddening night in which I seriously contemplated seeking out illegal drugs to get a reprieve from the pain. If I had a drug dealer at my bedside that night, I would have taken anything to make that pain subside. 

     My sanity has held up (for the most part) in the past few years, but I'm beginning to realize that this disease could break me like it has for so many others. I'd like to think that I'm a special case. I used to think that some of the physical and emotional trauma from my childhood better prepared me to handle all that comes with having a disease like this, but I don't think I can be so blithely hopeful about that anymore. This isn't to say that I'm suicidal (I'm definitely not there, don't worry!), I'm just more cognizant of what this disease can do. Like everyone else, I'm human. I may be mentally tougher than some due to genetics and/or personal experiences, but I'm not super-human and there may very well be a limit to what I can endure before breaking. A few weeks ago, a friend on facebook posted this quote: 

"Most of my HIV patients used to die ... now most don't ... Some still do, of course. My Lyme patients, the sickest ones, want to die but they can't. That's right, they want to die but they can't.  The most common cause of death in Lyme disease is suicide."

-- Excerpt from Dr. Jemsek's remarks to the North Carolina medical board in 2006

I used to think of suicidal people as those who get so depressed that they end up making decisions they wouldn't make in a normally rational state. I remember when I was first diagnosed, I was talking with a fellow patient who was totally flabbergasted that I hadn't thought about suicide after all that I had suffered in the previous years. She knew the statistics, knew countless other patients, and had yet to meet one that hadn't considered it. I pitied her. I had gone through the death of a friend due to suicide and  knew others who had attempted suicide or who had contemplated it. I saw her as someone who was emotionally unstable. Because I was overwhelmed dealing with me, I didn't know if I wanted to stay in close contact with her in the event that she took all the talking into action. 

     But what I've been realizing since then is that with this disease, suicide could be a perfectly rational decision. That may sound like an absolutely fallacious statement to some, but this disease can make you a prisoner in your own body. It can cripple you and leave you unable to care for yourself. The pain may ebb and flow between dull aches and intense shocks, but it doesn't stop. You may have to compromise what you want in life and let go of things that used to make you happy. I used to be a highly-active person who felt the greatest joy from playing sports, but I can't be that person now... and maybe ever. I've had to learn to take pleasure in the little things (getting to watch Rachel Maddow, eating cheesecake, or having a night chatting with friends) because I just can't do the bigger things. And if my days are numbered, I don't want to spend them all fretting about the types of happiness I can't have. To survive emotionally, I've had to redefine what happiness is and let go of the parts of me that couldn't live like this. I'm a different person than I was 10 years ago. Part of that, of course, is due to normal maturation, but there is also a part that is directly due to dealing with the effects of being sick. I know what compromises I've had to make to accommodate this disease and I know there may be more compromises in the future. Even if you can make it out of treatment alive, there may be permanent damage to deal with the rest of your life. You may never get to be "you" again. So for a person in a similar situation or worse, I can fully see and accept that one doesn't need to be irrational to think about permanently ending the suffering. Sure, this disease might drive you to madness instead, but that is merely one possibility. What I'm trying to say is that this disease is hard to deal with and there are a lot of components which may not be visible to those who don't have it or who aren't close to someone with it. Those who do something harmful to ease the pain or permanently try to end it may not be weak or delusional at all, but overwhelmed by a disease that may never let them free from its grasp or without a serious cost.

    I've been fighting a long time. This journey has sometimes felt like a roller-coaster ride from Hell that I desperately want off of. I wish I could wake up tomorrow and be like other college students just worrying about finishing school, entering the workforce, and enjoying all that comes with being 20-something. It would be wonderful to look at my daily activities and not feel like I have a finite amount of energy that only covers a few tasks. I'd love for the pain to stop and to be able to walk without the fear that I may be too weak to get where I need to go. I wish I was at the point where I could make plans with a friend instead of saying, "I'll see how I feel on that day." There's a lot of things I hope will change soon. I'm so ready to be done, but that desire isn't enough. For an unknown amount of time, this disease will continue to wreck havoc on my mind, body, and soul, and I will have to continue to find ways to cope and stay in this fight as long as necessary.

Here's to hoping that the next installment of this journal will be much happier...     

My Lyme Journal: Volume 9

It has been over a year since I've blogged about my experience with lyme disease. I wish I could say that this was for positive reasons, but the truth is that I've been frustrated and haven't wanted to spend any more energy thinking about it than I had to.

A little over a year ago I found out babesiosis had finally been killed. It was a time when the disease was at its last stage -- attacking my heart -- and all I could do was hope that my 23-year-old heart could continue to hold up. There would be times when I'd get that squeezing pain in my chest with a sharp intensity that would radiate out, the shortness of breath, the cold sweat, and the light-headedness, and I'd beg my body to not give out on me. It became routine that I'd let out a desperate plea asking to not lose consciousness because i this was the end, I didn't want to test and see if my unconsciousness had as much fight to survive. There were times when I was just absolutely terrified of what might happen. There was a time when I used to sleep just to have a short reprieve from the pain, but I'd keep myself awake as long as I could because I was too fearful that something would happen in my sleep.

So when babesiosis was finally killed at the end of spring, I felt like a whole new person. Instead of feeling like I was on death's doorstep living one day at a time, I had hope for the future. The idea of returning to school and finishing my degree was no longer a dream outside my grasp. Even though lyme disease was still there, I felt like my triumph over it was within reach.

A few months after that, I had moved out of my parents' house and was back at Oregon State to finish my degree. It started off so good. I was functioning at a level I hadn't been at in years and felt relatively normal for the first time in years. It used to be that I'd have to abide very closely to spoon theory just to do anything each day, but I could go out with friends without feeling like something would compromise my spoon levels for the rest of the week. I was dutifully taking my medications and keeping myself healthy, but I wasn't thinking much about being sick. I avoided the lyme communities online to break from hearing about the deaths of others and the sadness of desperate people trying out the new pseudo-scientific cure in attempt to put their hope in something. But I had hope that he would prescribe something that would cure in me in a few rounds. He was hopeful and I was ready to see that finish line. Everything just felt like it was getting better.

But then it was like I hit a wall during winter term. Some of old symptoms were returning and I felt like there was nothing I could do to slow it down. It turned out that for six months my antibiotics were doing nothing to stop the lyme from spreading. I went from having a relatively good number of t-cells for a sick person to one that so dangerously low that I had to worry about catching an opportunistic infection. And I was on a campus with 25,000 people! At this point, my doctor switched my medication to something that was supposed to be very effective at beating back the lyme, but it ended up having a decent defense with no offense. But at least it was keeping it mostly at bay. Despite this, I was feeling progressive worse.

A few weeks ago, my latest test results came back showing that my t-cell count was up by 10, but the lyme was noticeably worsened and overall everything else was worse. As hard as it was to hear, I saw it coming. The last half of spring term was absolutely brutal and I didn't even seem to feel any better after graduation when I made time for a few weeks of pure relaxation. I was beginning to feel totally helpless about the situation. I've been so careful about taking my medications at the right times, taking a variety of supplements, eating healthy, sleeping, and reducing stress -- which can be really hard to manage as a busy college student -- but I was trying so hard to make sure I brought something to the fight. I felt like I was doing my best to do the right things, but it just isn't enough. This disease is too powerful and my body is too overrun. I'm tired. And frustrated. And a bit angry. I'm coming up on the three year anniversary of treatment and I can't help but wonder how much longer it will take. I want my life back, and right now I feel like I'm light years away.

I picked up my old basketball today and it was as if that tactile sensation unleashed this rush of intense emotion and memories that had been previously locked away. I remember the countless hours I used to spend shooting at the hoop in by driveway. Rain or shine, I was out there every night perfecting my shot and running myself into exhaustion. At a time when my home and school life wasn't where I wanted them to be, there was something very therapeutic about being on a basketball court and working out the issues in my game. I remember my freshman year of high school when I was first basketball player on the court and the last to leave. And that often meant staying for a second practice as I would workout with the varsity coach and fill in on scrimmages. For years of my adolescence, everything was measured as a countdown until I could go to practice or go to a game; this was all that I lived for. I remember a teammate and I comparing bruises at the end the week like they were war wounds representing who fought the hardest. I remember the open appointments my doctor always had for me for x-rays and other tests since I never believed I was giving enough unless I was diving on the floor after loose balls, taking charges, or flying through the lane to get to foul line. I remember that intense high that came in a game where I'd feel absolutely invincible. Everything would get quiet -- no noisy fans, no fears or nervousness -- and I felt this burst of power coming out of me. I wouldn't even have to touch the ball before knowing that this play was mine and I was about to do something amazing. I remember the classmates and strangers who would come up after a game to tell me how inspiring it was to see someone like me playing so well.

And I remember being the varsity soccer player who was supposed to take the team to a new level. I was supposed to ride that expected success into the college game. But of course, that never came. So many people seemed so hopeful for me, but I never got to be the player I was supposed to be. My greatest skill and my greatest joy in the world was taken from me by lyme disease, babesiosis, and ehrlichiosis. As I was sitting there running my hand across the basketball, I remember the emotional toll of losing all that -- and that left the normally strong and stoic person in me break down and cry for hours.

And now I'm a 24-year-old writing a blog at 4am because I pushed it too hard on Wii Tennis and am in too much pain to sleep. Is this really what has become of my life? I can't help but think of what the 15-year-old me would think if she could see me now. Nine years ago I was spending seemingly every waking moment practicing a sport or working out in some way. And now, my muscles have atrophied and I barely have the strength to go for 10 minutes on an elliptical machine. The 15-year-old me would have rather died than to live like I do now. Sometimes it feels like the ultimate cruelty to take a person who lived such an active lifestyle and put them in a body like this. It feels like a prison that I desperately want to break out of. To some degree, I think I needed to let a part of me die in order to go on. The me that I was couldn't bear to live like this, so I had to let her go and grow again. I still feel her sometimes, but she feels like a past life at this point.

This disease has taken a toll on me. It has robbed me of so much and I don't know what I can get back. I still wake up every day in overwhelming pain all the while knowing that it won't get any better, so I better pull myself together if I want to make it through the day. Sometimes I feel like I'd be less exhausted if I didn't have to work so hard to zone out and distract my mind enough to keep me from crying all day. But I'm sure that effort is helping to maintain my sanity.

There are times when I wish I could wake up and realize that this whole experience was just a nightmare. I'm just so ready for this to be done. I want this disease out of me. NOW. I want to be able to go to graduate school and not have to worry about how the disease will affect my ability to succeed. I want to be able to wake up and not feel like every part of my body has beaten with a heavy object. I want to be able to able to hang out with friends and not get exhausted or hurt doing the most mundane of things. I want a life without chronic pain. I just want to deal with normal 24-year-old things. So I asked my doctor to put me on toughest treatment he could. I'm ready to kick this thing and am willing take some additional short term pain if that's what it will cost to get it done. I desperately want to see a glimpse of that finish line and I really hope this latest round of treatment will move me closer to that point.

Mass Incarceration, the War on Drugs, and the Prison Industrial Complex

References and further information are here. It might have been even more interesting to expand upon the incarceration of non-violent offenders, particularly non-violent drug offenders. According to a 2010 study by the Center for Economic Policy Research: 

"Non-violent offenders make up over 60 percent of the prison and jail population. Non-violent drug offenders now account for about one-fourth of all offenders behind bars, up from less than 10 percent in 1980."

As demonstrated by the ACLU infographic, people of color are over-represented throughout the prison system, particularly when it comes to drug law violations. According to the Drug Policy Alliance, "[a]lthough rates of drug use and selling are comparable across racial lines, people of color are far more likely to be stopped, searched, arrested, prosecuted, convicted and incarcerated for drug law violations than are whites."A 2011 report by the organization noted that:

"Mass arrests and incarceration of people of color – largely due to drug law violations – have hobbled families and communities by stigmatizing and removing substantial numbers of men and women. In the late 1990s, nearly one in three African-American men aged 20-29 were under criminal justice supervision, while more than two out of five had been incarcerated – substantially more than had been incarcerated a decade earlier and orders of magnitudes higher than that for the general population. Today, 1 in 15 African-American children and 1 in 42 Latino children have a parent in prison, compared to 1 in 111 white children. In some areas, a large majority of African-American men – 55 percent in Chicago, for example – are labeled felons for life, and, as a result, may be prevented from voting and accessing public housing, student loans and other public assistance."

A common defense of our disastrous prison system is that it is safer for our communities to lock up those who are a threat to others -- but non-violent drug users are more of a threat to themselves than anyone else. Here's a radical thought: We should treat drug use as a health problem and not a criminal problem. I'd much rather see a portion of my tax dollars go to free or low-cost drug treatment facilities available to all and for community-based programs designed to tackle the reasons why individuals abuse drugs or engage in different kinds of criminal activities.

Whether society is ready to hear it or not, it is a waste of our tax dollars to continue to pour money into this bloated and ineffective industry. In reality, prisons are less about keeping citizens safe and more about the impact of the growing influence of privately-owned prisons and corporations using inmates as slave laborers in a system coined the prison-industrial complex. As Angela Davis describes:

"Prisons thus perform a feat of magic. Or rather the people who continually vote in new prison bonds and tacitly assent to a proliferating network of prisons and jails have been tricked into believing in the magic of imprisonment. But prisons do not disappear problems, they disappear human beings. And the practice of disappearing vast numbers of people from poor, immigrant, and racially marginalized communities has literally become big business.
The seeming effortlessness of magic always conceals an enormous amount of behind-the-scenes work. When prisons disappear human beings in order to convey the illusion of solving social problems, penal infrastructures must be created to accommodate a rapidly swelling population of caged people. Goods and services must be provided to keep imprisoned populations alive. Sometimes these populations must be kept busy and at other times — particularly in repressive super-maximum prisons and in INS detention centers — they must be deprived of virtually all meaningful activity. Vast numbers of handcuffed and shackled people are moved across state borders as they are transferred from one state or federal prison to another.

 All this work, which used to be the primary province of government, is now also performed by private corporations, whose links to government in the field of what is euphemistically called “corrections” resonate dangerously with the military industrial complex. The dividends that accrue from investment in the punishment industry, like those that accrue from investment in weapons production, only amount to social destruction. Taking into account the structural similarities and profitability of business-government linkages in the realms of military production and public punishment, the expanding penal system can now be characterized as a 'prison industrial complex.'

... "Many corporations whose products we consume on a daily basis have learned that prison labor power can be as profitable as third world labor power exploited by U.S.-based global corporations. Both relegate formerly unionized workers to joblessness and many even wind up in prison. Some of the companies that use prison labor are IBM, Motorola, Compaq, Texas Instruments, Honeywell, Microsoft, and Boeing. But it is not only the hi-tech industries that reap the profits of prison labor. Nordstrom department stores sell jeans that are marketed as “Prison Blues,” as well as t-shirts and jackets made in Oregon prisons. The advertising slogan for these clothes is “made on the inside to be worn on the outside.” Maryland prisoners inspect glass bottles and jars used by Revlon and Pierre Cardin, and schools throughout the world buy graduation caps and gowns made by South Carolina prisoners. 

'For private business,' write Eve Goldberg and Linda Evans (a political prisoner inside the Federal Correctional Institution at Dublin, California) 'prison labor is like a pot of gold. No strikes. No union organizing. No health benefits, unemployment insurance, or workers’ compensation to pay. No language barriers, as in foreign countries. New leviathan prisons are being built on thousands of eerie acres of factories inside the walls. Prisoners do data entry for Chevron, make telephone reservations for TWA, raise hogs, shovel manure, make circuit boards, limousines, waterbeds, and lingerie for Victoria’s Secret — all at a fraction of the cost of ‘free labor.’"

Our prison system is in serious need of reform, but it seems we are far from recognizing it. How many more of our neighbors have to be locked up before we realize it isn't working as intended?

The Phoenix Mercury's Male Practice Squad

OK, I've officially been awakened from my blogging coma. With the GOP's legislative assault on women, the Wisconsin union-busting law, the inhumane treatment of Bradley Manning, and countless other stories that have come out recently, I've been on outrage-overload barely able to muster snarky or WTF comments on facebook links. But I read something today that made me so angry that I can't finish my homework until I write out my feelings.

I've always been a fan of the WNBA. I followed the Portland Fire for the short time they existed and transitioned my team loyalty to the Seattle Storm soon after. But I've long enjoyed seeing Diana Taurasi play since the days she dominated the college game at UConn and I've followed her WNBA career after she was drafted by Phoenix in 2004. And by the time Phoenix moved to the Paul Westhead-style in which she flourished, I had found my new favorite team. Since then, they've won three conference championships and two WNBA championships, several All-Star selections, including Diana Taurasi, Candice Dupree and Penny Taylor last year while Taurasi won both the league MVP and finals MVP in 2009.

What ignited my outrage was a link posted on the Mercury Facebook fan page which stated: "Join the Mercury Male Practice Squad." I was already a bit irked by it but decided to withhold judgement until further review, but I was fuming when I followed the link to the online form to tryout. This is all they ask: Name, age, home phone, email address, t-shirt size, best time to tryout, and if they've ever been to a Mercury game. There was no question asking whether applicants have ever played at the college or professional level and not even a mention of desiring someone with some kind of basketball experience.

Seriously, WTF?! It's no secret that women's professional sports have struggled to attract a male audience, particularly in sports many deem to be too-masculine for women to be truly competitive in. There's a reason why the WNBA requires players to wear makeup when they don't play, why players pose for Playboy* [intentionally not linking], and why there's such a thing as a lingerie football league [wikipedia]. In these kinds of sports, the mainstream notion is that women will never be able to play at the level of men because their genetics preclude them from reaching the same level. This is bullshit and we shouldn't continue perpetuating it. While it may certainly be true that the best NBA players could beat the best WNBA players (size differences themselves would make matchups difficult), it doesn't mean that men overall are better. This is often the same confusion with IQ scores that claim men are smarter than women because there are a higher number of men at the top. Taken from the opposite angle, one could say men have less intelligence because the have higher numbers on the other end. WNBA players are better than the majority of men -- and that should not be a controversial statement.

This reminds me of a misogynist prick back in high school who couldn't bear to watch women's sports at any level because he believed he could beat any one of them. He also happened to be a JV benchwarmer with a laughably-bad jump shot. I don't care how genetically superior you think your XY genes are, their presence alone isn't enough to best the hard work and skill of those with XX genes.

Anyway, the point of this lead-up is that this open tryout for a male practice squads reeks of the men-are-always-better-at-sports stereotype. It sends the creepy message that what it will take for this team to get back to another WNBA championship (they won in 2007 and 2009) is to be challenged by men. I wouldn't be offended if, for example, 7'2" Margo Dydek came back to the WNBA and started tearing up the league and teams needed 7 foot tall ex-college and professional players to practice against.

Besides, a man would have to have some solid college or professional experience to provide worthy competition for someone like Taurasi. Let's be honest here: She's undoubtedly one of the greatest women's college basketball players ever -- if not the best -- and is one of the most dominant players in the WNBA. Her size, athleticism, and ability to shoot the ball are extraordinary -- I dare say that she could hold her own against some NBA players. She also has some great teammates as well. Penny Taylor, for example, is a fascinating player to watch because she is incredibly well-rounded and has such a high basketball IQ. She knows how to tear apart defenses and has an uncanny ability score points any way she can get them. She's fearless and relentless, and her ability to maintain composure in tough situations reflects her long history on the Australian Olympic team and time in the EuroLeague and WNBA. The Mercury coaching staff might have to look further than an open tryout to find worthy competitors.

Now I don't mean to say that practice squads with men are terrible and have no place in women's basketball, but I think they have to marketed and employed much differently to avoid playing into harmful and dead-wrong stereotypes about women. For instance, the Seattle Storm employ a male practice squad mainly for athletic bodies to scrimmage against (the WNBA recently cut squads to 11 players) who aren't there to teach, but for fair competition. Unlike the Mercury and other teams like the Los Angeles Sparks and the New York Liberty, the Storm set themselves apart because they don't hold open tryouts. Their players are chosen after recommendations from select people and all of them have experience at the highest levels.

For the Mercury to host open tryouts -- and worse, without even recommending that potential players have college and professional experience -- they are playing into the sexist and incredibly offensive notion that men are always better than women and that these incredibly talented professional athletes could learn something from playing with men. Google "Phoenix Mercury male practice squad" and take a gander at the rank misogyny that permeates the pages. KB at JockPost [I'd rather not actually link to it] has this to say about the male practice squad: 

"What happens if the girls play these 15 guys and get smoked every practice? That is sure-fire way to boost the confidence of a team that was successful last season. [/sarcasm]... How many guys want to go play ball and get run off the floor by a bunch of women?  The potential for humiliation is unparalleled.  Un-f**king-paralleled. I think I would rather take a swift kick in the nuts every night. On a good note, attendance should go up by 10-15 people since all the men get free tickets." 

As he believes there are two scenarios: the "girls," women, could get run off the court by men with more athletic prowess, thus reducing their confidence throughout the season or the men could risk humiliation by being beaten by women at a sport. The author also points out that he would rather risk daily impaling of his testicles than deal with the humiliation/shame of losing to a woman who is a professional basketball player. Here's a sign that masculinity is in crisis. Todd Dewey at the Las Vegas-Review Journal also let out his seething sexism: "We were set to try out until we realized we'd have to watch a Mercury game if selected." A Celtics NBA forum noted that it was "a great idea" for women to play men and that they will "prbably [sic] become the best team in the league pretty soon." For a team that won it all in 2009 and lost the conference finals to the league-best Storm, their chances to win it all *totally* depend on a male practice squad to get them to that next level. Riiight. Later it was stated that the "Mercury will be investing heavily in long-haired wigs..." because surely they can't succeed without men on the team carrying them. What a steaming pile of bullshit written by someone who has probably never watched a game.

To the Mercury marketing people (not that they'd ever actually stumble upon my little blog), I recommend changing the press release to something like this:

Join the Mercury Practice Squad

Have you played college or professional level basketball? If so, want to play competitively against some of the best players in the world? Coach Gaines is recruiting for a practice squad that will scrimmage against the Mercury throughout the upcoming season. We're looking for players of either sex, particularly taller players (6'4+) who are already in basketball shape. Please send resumes and a skills tape and we'll invite the best candidates to come in for a tryout. 

It's depressing to me that the WNBA struggles to stay afloat and the talented players in the league don't receive the respect they should. The WNBA can't fix the misogynist culture we function under that would rather see women as sex objects than human beings judged by something other than looks, but these practice squads required a more careful PR because their not-so-explained existence helps fuel sexist drivel.





*Just to expand upon this a bit more, I'm not saying that it is always wrong for women to pose nude. Nude photos can be beautiful and artistic, and its something I have no interest in wanting to stop someone from participating in. The difficulty is that I remember the discussions, especially back when I was in high school (I graduated in 2005), about whether WNBA players appearing nude would bring much-needed male attention -- and subsequently, legitimacy -- to the struggling league. There's the debate about whether the league should just be happy men are drawn in no matter what the reason, but this debate leaves out a crucial component: in a patriarchal culture in which women can be reduced to sex objects instead of full-fledged human beings, the focus on selling attractive players and the closeting of lesbians to draw in (heterosexual) male viewers obscures the fact that this is an athletic competition. I would much rather see players marketed by showcasing their superior talent -- their basketball skills -- not their looks.  

Quick Note: I've left the Daily Barometer

After several weeks of being frustrated by the sloppy editing of my columns, I've left the Daily Barometer. The editor-in-chief decided he'd rather lose me than address the problems that continued to reflect poorly on the paper.

It's so depressing to be done with it all. I've truly enjoyed my time there and I know I've grown immensely as a writer because of it. I'll miss all the responses -- both positive and negative -- from fellow students, faculty, and the greater community which helped me better formulate my arguments and inspire me to keep going. But it got to the point where I'd feel embarrassed every week over what errors the copy editors would slip in. Sometimes they were dumb errors as if I'd forgotten to check for typos, while others compromised the integrity of my pieces. As much as I enjoyed the big audience, I just couldn't allow to continue to let my credibility be damaged.

Now this means I'll have more time for this poorly-neglected blog. With schoolwork, applying to graduate school, volunteering, clubs, and continuing the not-so-fun lyme disease treatment, I've trading blogging for sleep and a bit of relaxation (not that I've gotten much of either). But I'm making an effort to write more (I do enjoy it) and to make sure that snarky one-liners of micro-blogging on twitter and facebook won't be my only contribution to the internet. And hopefully I'll have the opportunity to write a few other places in the future.

-- Sara