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of drugs or the disease and have been too worried about posting something stupid or poorly written, so I have several unpublished drafts that I should re-visit (titles: white privilege and social activism, dating while disabled, why anti-choice?, ...).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.
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.