Happy Belated Birthday, Affordable Care Act!

I realize I’m a bit behind, but the Affordable Care Act (ACA) recently turned three years old in the U.S., and I feel the need to write a post on it.

Because of the ACA, I don’t have to wear these braces on my arms all the time, and I can type as much as I need to!

Three years! Legislation that, for some reason, seemed so tenuous even just a year ago, has been implemented for three years! That is quite an accomplishment, not only for the Obama administration, but for people all over the U.S. We still have a long way to go, of course. For instance, some of our governors are still dragging their feet about expanding Medicaid access and though the ACA significantly expands coverage and the availability of health insurance, it still does not ensure universal coverage for everyone. However, as a speaker at a conference I attended a few weeks ago said, the ACA changes our dialogue around healthcare. Instead of bickering about whether or not we should provide it in the first place, it’s going to make us consider how we’re going to get coverage to people. It may, she suggested, prompt individual states to institute universal coverage, much like Massachusetts currently has, and so we in the U.S. may get universal coverage someday. And that dream seems nearer and more achievable because of the ACA. I sincerely hope she was right.

For the time being, though, the ACA is still something of a controversial subject. Even though the Supreme Court has declared it constitutional and it doesn’t seem like it will be going away anytime soon, mention of the Act will get you derisive snorts and an eye roll from a lot of people, often people who will be helped by this legislation. And there are still lawmakers in Congress who are attempting to cut off funding for the Act, since they weren’t able to kill it in the courts.

So, I wanted to write about how the ACA has impacted me. Because if it weren’t for the ACA, I wouldn’t have healthcare coverage, and for the first time in my life, I desperately need to be able to see a doctor on a regular basis. Just this past summer, I graduated. Without the ACA, I would have been unable to remain on my parents’ health insurance plan. I would have been unable to see a doctor about my carpal tunnel. I would have been unable to see a doctor about my ulnar nerve problem. I’ve started developing other health problems that require medical attention, and without the ACA, I wouldn’t be able to have that care. Not only would I not have access to care, my conditions wouldn’t be treated. I wouldn’t be able to write or work. I wouldn’t be able to be a productive member of society. By investing in everyone’s healthcare through the ACA, we ensure that people can be healthy enough to go to work and contribute to our economy and society. When everyone is physically able to give back to the system, we all benefit.

I know a lot of people who don’t see the ACA that way. And these people aren’t figures on FOX News or talk radio. These people are my friends. They’re my family members. They’re people that have known me for years, and I care about them deeply, and I know that they care about me. So, to my friends and family who oppose the ACA–people that I know and love–every time you complain about “socialized medicine” or “government interference,” essentially, what you are saying is that you want me and people like me to live a life of pain. You are telling me that you want me to have to give up being able to do the things that I love and the things that I need to do to work. You are telling me that I don’t deserve to see a doctor. You are telling me that you want me to I have immobile hands and fingers and an arm too weak to perform even the simplest tasks.

I know you probably don’t see it that way. I know that you probably think of your arguments in abstract terms. But you know what? The ACA affects real people. I am one of those people. I am able to live a healthier life because of the ACA. Because of the ACA, I don’t have to be in pain everyday. And there are millions of people out there who are suffering worse than I am. There are people out there to whom my suffering is like a paper cut, and you know what? Because of the ACA, those people can do to the doctor or the hospital. They can get the care that they need. They can have conditions treated before they become chronic. They can go back to work and resume their normal lives. The woman in remission from cancer was able to switch her coverage when she changed jobs, because the ACA says that she can’t be denied coverage for pre-existing conditions. The man whose old sports injury has come back as osteoarthritis in middle age? He can have coverage too, even if his job doesn’t offer it. The woman who just a year ago suffered such crippling depression that she couldn’t attend her kids’ birthday party? Now she can afford her medication! The ACA is about giving real people necessary healthcare. It’s about taking care of everyone, so that we all benefit. It’s about letting people have a higher standard of living and quality of life. It’s about telling people that they are worth enough that they don’t have to live everyday sick and in pain.

So the next time you complain about the Affordable Care Act, you look me in the eyes and tell me to my face that you think I should live everyday in pain. Me–a person you know and love and who knows and loves you. Could you do that? Could you honestly tell me that you want me to spend my days in pain and unable to work or do the things that I love? Because I sure as hell could never do that to you. In fact, if I knew that you were in pain, I would fight with everything I had to ensure that you didn’t have to be.

The Affordable Care Act has changed my life. It’s about real people, and I am one of those people. It’s allowed real people to have a quality of life they never could have had before.  It’s saved the lives of real people.

A Tip About Doctor Visits

Since I sporadically blog about my health, I’m going to write about seeing a new doctor today. It went pretty well. The woman was friendly and personable and listened to my descriptions of my symptoms and the history of what I’ve been diagnosed with so far and what treatments I’ve tried. She never said “Oh, but you’re too young to have this!” And she didn’t give me any unhelpful suggestions like, “Have you just tried to stop writing?” She didn’t have any immediate answers for me, but I did have some tests done and I got some referrals. I left feeling like I’m being proactive about my health, which in and of itself sort of makes me feel better. I hate just lying around and hoping things will suddenly get better on their own, when I’ve been doing that for a year and so far it’s just made me feel useless.

I did, however, try something new with this doctor. Before I went to the appointment, I made an outline of my recent medical problems with my hands and arms. I listed approximate dates of symptoms, previous doctors I’d seen, diagnoses I’d been given, and remedies I’ve tried. I found that it was a lot easier to just hand the doctor the list I’d typed up than attempt to explain to her what I’d been going through, what I’d already tried, and what symptoms I was having. I think it helped because, previously, when I’d tried to explain what was going on to doctors in the moment, I often found myself not knowing what to say. I find doctors sort of intimidating, which I know is ridiculous because doctors are just as fallible as anyone else, but I often feel like I’m taking their valuable time away from other patients. I’m not dying. I’m not suffering from a terminal illness–at least, I doubt that I am. I often feel almost like I don’t deserve to be there when there are so many people with more serious health problems and a more immediate need for care. (This was especially true this summer when I was seeing a doctor whose office was located in a hospital. One day, on my way to an appointment, I was on my way to the doctor’s office and I found myself behind a woman who appeared to have undergone surgery on her legs. She was struggling just to walk down the hall, even with the aid of a walker and a therapist by her side. I knew, logically, that by seeing a hand doctor located in the same hospital, I wasn’t taking anything away from her, but after watching someone just struggling to walk a few feet, my own problems felt sort of insignificant. This is an issue because, when I got to the appointment, I downplayed how much my arms were bothering and making activities like typing or driving difficult. I wasn’t honest with the doctor about just how much discomfort I was in, so he assumed I was improving more than I was.)

Anyway, by sitting down to make a list, I was able to remove myself from the intimidating environment of a physician’s office and focus on my health problems without comparing them to anyone else’s. Making the list also helped me focus on the most important things I wanted the doctor to know. So many times, I’ve left an appointment thinking, “If only I would have remembered to mention this or that!” Well, today, because I had a paper with all of the most relevant, most important things that I wanted the doctor to know, I didn’t have that problem. It also made the conversation that I did have with the doctor more focused. Instead of starting out by describing my problem to her, I was able to quickly bring her up to speed on everything I’d already tried or had done. The timeline gave her a quick overview of the basics like when my symptoms started and how long I’d had them, so she was able to ask me more detailed questions about what treatments I’d tried. Overall, I left feeling like someone had actually listened to me and that I’d adequately expressed myself. And, because the doctor had an accurate idea of what I’m experiencing, she was able to put together some potential plans for treatment.

So, the moral of this story: if you have complicated health issues or have trouble talking to doctors, try writing down your symptoms and history before the appointment. I suspect things will go much more smoothly.

Because I Occasionally Blog about My Health Too…

I’ve previously written about having carpal tunnel. This summer, I did some physical therapy, and for a while, it seemed to help. And then it didn’t. I went from feeling sort of normal to again having tingling, numbness, and stiffness in my hands. So, my therapist sent me back to the doctor, and my new diagnosis is stretched ulnar nerves–a problem similar in symptoms to carpal tunnel, except it’s caused by the stretching of the ulnar nerve in the elbow, which runs along the funny bone. I had some more nerve conduction tests done, and according to the tests, there’s nothing wrong with me. Except I know that there is, because my arms feel weak and numb all of the time. I could have surgery, but my doctor doesn’t feel good about that option, because other than my descriptions of my symptoms, there’s nothing that actually proves that this is my problem.

So, at the suggestion of a co-worker, I’m taking malic acid and magnesium supplements. I’m not usually big on vitamins. A friend’s mother, a dietician, calls them “expensive pee” because most people don’t need them, so their bodies just end up flushing them. And I’ve always lumped vitamin supplements in with other woo-woo remedies that don’t have double blind, replicable studies done by professionals supporting them. But I’m kind of at the point where I don’t know what else to do.

At least this problem isn’t affecting my ability to work, but it would be really nice to have some extra strength in my arms once I get out of work so that I can do things like write my own stuff or take up some of my other hobbies again like making beaded jewelry or learn how to play the guitar or actually go out with people. Sigh… I know a lot of people have problems that are much, much more serious than mine. There are people with life-threatening illnesses that have no cure. There are people who don’t have health insurance and can’t even see doctors about their problems. (As much as I wish the Affordable Care Act were more comprehensive and had a public option, I am so grateful for being able to stay on my parents’ insurance until I’m twenty-six. I’m not sure what I would have done without it, because if it weren’t for the ACA, I wouldn’t be insured right now.) I know there are a lot of things right now about my life that could be worse,  but that doesn’t make this issue any less frustrating.

Some Thoughts on Job Searching

So, on a personal note, I’ve been job searching this summer. I had a temporary retail position, but I’ve had to quit that since my lease is up soon and unless something pans out, it looks like I’m going to be moving in with my parents at the end of the month. I’m really not happy about that. Don’t get me wrong, my parents are great people, and through their influence I became the inquisitive, thoughtful critical thinker that I am today (even if it didn’t quite turn out the way they expected). I had just hoped that once I graduated and finished school, I’d be able to live on my own, pay for my own things, and generally be independent.

One of the many problems with job searching is that it requires a lot of introspection. I write an individual cover letter for every job I apply for, which means that for each job, I spend a lot of time thinking about what makes me qualified, what experiences I’ve had that I can bring to the job, and why my background makes me a good fit for this organization or that company. I find myself second-guessing my past a lot. Should I have bothered with a Master’s degree? With only a couple exceptions, the jobs that I’m looking at and am qualified for don’t require one. The Master’s seemed like a good idea at the time…(This was when I really thought I wanted to teach English at the college level and stay in school forever. Graduate school quickly cured me of that.) I also second-guess my internships. Yes, they lead me to realizing that I want to go into non-profit communications and, yes, they are better than no job experience on my resume at all. But they were both with very niche organizations that espouse ideological values that, to some, could be controversial. Okay, I interned with feminist and atheist—erherm, “secular humanist”—organizations. In many ways, I don’t regret these internships because I loved working for them, met some amazing people, and had some wonderful (and practical) experiences. But I do wonder if I should’ve done something safe (and maybe paid?) and less controversial. It was a little awkward when I realized I was applying for a communications position at a Catholic university and nearly all of my writing samples are pro-LGBT rights or pro-abortion. (I didn’t get that job. No surprises there.) I’ve always prided myself as someone who stays true to her values, holds out for the best that she can get, and doesn’t take the easy road. But it was a lot easier to be that sort of person when I was in school, which I’m realizing is a very controlled environment that has little bearing on life in the real world, and when I didn’t have health problems to worry about.

This introspection has also made me realize that as I applied for and worked in these internship positions, and pretty much every job I’ve ever had, I kind of fell into them without really understanding what I was getting into. When I applied to intern with a feminist non-profit in Washington, D.C., I didn’t think, “This is an experience that will build a foundation for my future career goals!” I thought, “Everyone else is doing summer internships. I should do a summer internship. Ooo! Feminism and writing! I like those! I’ll apply for that!” The internship with the secular humanist organization was a bit more calculated. It was a a resume builder and fall-back in the event that I didn’t get a paid summer job. But I still didn’t really see it as something that would affect my future. I think I had this attitude because, at the time, I saw myself as a student. In the end, I figured, the internships would be over in August and I would go back to school. School was what I focused on most. Now I’m realizing that, in terms of jobs experience, the portfolio that I built with these organizations matters much, much more than my degrees.

Ultimately, because of that portfolio, I really don’t regret my internships. I also don’t regret them because they were experiences in which I grew not only intellectually but also personally and emotionally. Sure, I wasn’t getting paid, but the intrinsic value that comes from working on projects that I felt excited about, from not just feeling but knowing that I was making the world a better place, and from meeting people that shared my interests and passion more than made up for the dent in my back account. (And, yes, I realize that I was privileged to be able to spend my summers working for free. I’m not denying that I got where I am today at least in part because of that privilege. And one of the reasons why I want to work with non-profits is so that I can extend that privilege to the many, many people who deserve but don’t have access to opportunities that people like me have.) At the time, even though I didn’t fully understand how those internships would play out, I’m ultimately glad that I did them.

And now I have two upcoming interviews, and in my over-thinking fashion, I’m wondering how they’re going to pan out and what that will mean for my future, because at this point, I don’t have school waiting for me at the end of the summer. Both of the interviews are with non-profits whose missions I care about. One is in a city about six hours away from where I currently live, doesn’t pay well even for non-profits, but does offer full benefits. Though I’ve spent the past year whining about how much I can’t stand my current location, as I’m starting to think seriously about moving, I’m kind of bulking at the prospect. I wouldn’t know anyone and I’m not sure what I’d do if my carpal tunnel flares up before my health benefits kick in. On the other hand, this is the best job I’ve had a shot at so far. The second interview is for a paid, part-time internship position. Even if I got a second job, I’d still probably have to live with my parents, a prospect I’m not thrilled with. However, it would only be until the end of the year, by which point, I’d hopefully have had a chance to network with other non-profits and maybe, maybe land a full time job. Also, hopefully, by then I’d have this damned carpal tunnel sorted out and in the meantime, I’d still be close to my doctor and physical therapist. I’m realizing that, however this situation plays out, I’m probably going to just fall into something again without fully realizing the consequences until it’s too late to back out.

I’m trying to convince myself that it’s okay not to know what the future holds. All I can ask of myself is that I make the best decision I can with the information that I have right now. (And to calm down, because I haven’t even been offered either of these positions yet! I’m just being interviewed!) I’ve fallen into things in the past—undergrad, jobs, internships, grad school—and overall I’m happy with the way they turned out and how I dealt with them. The same thing will happen in my current job situation. I don’t believe that everything happens for a reason or that there is some cosmic greater plan. I do, however, believe that we ourselves give a reason and a meaning to everything that happens. I’ve managed to give meaning to many of my past experiences, like my internships. However, I have other past experiences, like going to graduate school, that I regret. (Maybe in a few years, when I have more perspective on it, I won’t regret it. Who knows?) Right now, I’m hoping that however my job search turns out, I end up with more meaning than regrets.

I guess what I’m trying to say is that life is unpredictable, and while I know that, sometimes it’s hard to come to terms with, especially when I’m used to being in school, where everything has a nice, easy rubric to follow and results are guaranteed. On a more theory-related note, I watched my first Quentin Tarantino film this weekend and I have some thoughts on it. I’ve also read a serious, academic book related to current political and social issues. So, stay tuned for more serious posts coming later this week!

Trying to Get Back in the Blogging Habit Again…

So, I truly planned to start blogging regularly again. And then life got in the way. I was working toward getting my Master’s, while having carpal tunnel syndrome. Every word that I typed felt precious, as it made my fingers stiff and tingly and sometimes I couldn’t move them for days. I had to decide which words were the most important. And the most important words tended to be those that contributed to getting my degree. So I focused on writing my papers and let this blog go.

Now I’ve completed my Masters and am looking for a job. I’ve also found a wonderfully supportive doctor and a very kind and patient physical therapist who are helping me through my carpal tunnel. I have more time and my hands are feeling better, so I want to get back in the habit of blogging. I’d also like to possibly have something worthwhile, like a decent blog, to show to some potential employers. If nothing else, I’d like to remember what it’s like to write for the pure joy of writing again, as opposed to writing to please professors and get good grades.

So I’m going to try to get back into the habit of blogging again. I’ll see how it goes this time.

Automail: Not as Easy as It Looks (Or, How Watching Fullmetal Alchemist: Brotherhood Is Helping Me Cope with Having Carpal Tunnel Syndrome)

This post is a little bit more personal than usual, but it still contains references to theory and pop culture, so I thought I’d include it. Also, though I tried my hardest to avoid them, if you haven’t already seen Fullmetal Alchemist: Brotherhood and don’t want to know what happens, this post may contain some spoilers. There are also spoilers for James Cameron’s Avatar.

So, I was recently diagnosed with the dreaded disease of writers, gamers, and programmers: carpal tunnel syndrome. In retrospect, I’d probably started coming down with it last school year, but being about to get my B.A., I’d staunchly ignored it and kept typing papers, even when my fingers felt “funny.” This school year, however, it’s gotten so bad that I can’t ignore it. I woke up one morning with my hand completely numb and unable to move my fingers. Steroids and a brace have helped, but I still get frustrated often. I used to be able to write all the time, and now I have to take frequent breaks or avoid my keyboard (and my computer) for long stretches, sometimes days, at a time. As someone who has always identified herself as a writer and taken pride in her ability to type quickly and accurately, this is hard. There have been times when I have been dying to write, anxious to put down the words that I can see so clearly in my mind…and then my fingers start getting twitchy and tingly and stiff, and I have to stop. Usually these sessions end with me sitting in front of my computer and crying tears of frustration. I know my situation could be a lot worse, but that doesn’t stop me from feeling upset sometimes.

Okay, enough self pity. On to the pop culture! I recently started watching the Japanese anime series, Fullmetal Alchemist: Brotherhood. If you want a detailed run-down of the series (and I recommend it! It’s very exciting with beautifully portrayed and fully realized characters) this would be a good place to start. For the purposes of this post, all you need to know is that the protagonist, Ed, is a teenage alchemist (for the purposes of this post, that’s more or less like a wizard). There are good guys with supernatural powers who fight bad guys with supernatural powers. Oh, and Ed is missing an arm and a leg. In our own world, this would probably be a major setback for Ed, but in his fantastical universe, a type of prosthetic known as “automail” is readily available. A limb made from automail can do pretty much everything a flesh and blood limb can, as it is connected to the body’s own nerves through a series of wires. It is also jointed in the same places as a flesh and blood limb, so it can move in the same ways. In certain situations, automail can even be used to enhance a limb, as one character with automail legs has a canon in her kneecap.

When I first started watching the series, I kept thinking back to what I’ve read of disability theory, which looks at how people with disabilities are portrayed in our culture (or in this case, Japanese culture? I feel a little weird applying a Western theory from a Western perspective to a Japanese television show. If I get something wrong or miss something, feel free to let me know in the comments). And, usually, people with disabilities aren’t shown at all. Or if they are, their disability is minimizes or made invisible in some way. (Think of Avatar and how the main character is confined to a wheelchair, but for the most of the movie, he’s in his avatar body which has no such constraints. The movie glosses over his disability and then gets rid of it all together at the end.) Ed’s disability seems to fit this depiction. Sure, he really wants his original arm and leg back, but his automail overall works pretty well. He can manipulate his metal hand as easily as his unaffected one. He can run, fight, and move in the same ways people with their original limbs can. Though the automail maker, Pinako, warns him that his rehabilitation will be long and difficult, the series glosses over whatever physical therapy-like training Ed had to undergo to use his automail. After he has it installed, the shot cuts to a new scene, some time later, in which the audience sees him sparring with his brother almost as though nothing has happened.

Those were my first thoughts about Ed and his disability. But then I kept watching the series, and while I still think automail is, to some extent, a way to push aside the main character’s disability so that he can still run after the bad guys and land a punch, Ed still struggles with not having his original limbs. Most of his struggle is psychological. He lost his limbs in a traumatic incident that also severely damaged his brother, and he feels guilty for his role in the events that led to such a devastating situation. His metal arm and leg serve as constant reminders of the guilt he feels and the burden that it places upon him. And certainly, not all of the suffering of coping with a disability is physical. Amputations, chronic diseases, mental illnesses, and genetic disorders all carry psychological as well as physical costs.

Ed also suffers from not being “normal.” Though he hides his automail appendages with gloves and boots, whenever people see his missing limbs, they tend to be shocked. They stare. They want to know what happened. Some characters are also able to guess, just from seeing Ed’s injuries, what sort of incident led to his missing limbs, which increases his guilt. Though his automail functions practically the same way organic limbs would, it still marks him as different from other people.

But, of course, Ed’s automail is not the same as his former arm and leg. The series (at least as far as I’ve gotten) doesn’t discuss the drawbacks to automail in detail, but they are there. Unlike skin, muscles, and nerves, automail can’t heal itself, so anytime Ed’s automail is damaged, he has to find an automail maker, usually his friend Winry, to fix it. Also unlike muscle, automail can’t become stronger. Though Ed practices his fighting techniques at every chance he has, the strength of his automail is completely subject to how well it has been made and repaired. This has dangerous consequences for him, as at one point during a fight, his automail arm breaks because the last time Winry repaired it, she forgot to include a necessary screw. Being made of metal, it also rusts.

The series doesn’t dwell on these difficulties. More often than not, Ed’s automail works just fine until it is convenient for the plot that it break. But still, the series, however subtly, shows Ed living with a body that is not completely under his control. Instead of being able to do whatever he likes whenever he likes, sometimes Ed has to deal with the fact that his prosthetic arm or leg just isn’t going to work that day. So he complains and sulks for a bit, gets over it, and then gets back into the fight the next day. And that’s kind of how I feel having carpal tunnel.

Now, I’m not going to go so far as to put myself in the category of people with disabilities. Like I said before, I could have it a lot worse. I can still type—I’m just slower than I used to be. I haven’t lost my entire arm. And if my carpal tunnel gets bad enough, well, I can have surgery to have the problem taken care of once and for all. This isn’t something drastic that is going to permanently change everything about my life, unlike someone who, for instance, is diagnosed with Huntington’s disease or becomes a paraplegic. To put myself in the same category as people who are struggling with radical, life-changing ailments and valiantly learning to live with them would seem melodramatic and selfish on my part. So I’m not going to do that. However, there was a brief period, when my hand went completely numb, where I got a small taste of what it was like to not be able to use one of my hands. It was tough. I had to actually think about everything that I was doing, even basic things like buckling a belt, that I usually did unconsciously. Now I can pretty much do everything that I used to without thinking about it, unlike people who have to learn how to do everything one-handed. It was hard enough for me to go without my hand for a few days, and I have much more respect now for people who learn to live with that sort of situation permanently.

I guess what I’m trying to say is that now I have a lot more sympathy for people with disabilities than I did before. And because of that, I can relate to Ed in ways that I probably couldn’t before. Before, while watching the series, I probably would have wondered why getting his arm and leg back were such a big deal to him, when his automail limbs seem to work just fine. Now I realize that, while they might be a good substitute (certainly better than the prosthetics technology we have in the real world), they aren’t perfect. (Why do I want my former, non-tingly fingers back when the ones I’ve still got almost work the way they used to?) I’d also probably miss a lot of the more subtle ways in which Ed has to listen to his body and let it dictate what he can or can’t do, even if he wishes otherwise.

And despite all that, he still manages to fight the bad guys and save the people he cares about. Having an “imperfect” limb or hand or body doesn’t mean that he can’t do things. It just means he has to do them differently. And ultimately, not having his original arm and leg makes Ed who he is. If the incident that caused him to lose them had never happened, there would be no story. But there is a story, and within that story, Ed’s missing limbs bring certain challenges and setbacks, which Ed deals with. At the end of the day, he still manages to kick the bad guys’ asses. So, from a disability theory perspective, while the series sort of glosses over Ed’s disability, it also shows him coping with it. And from a personal perspective, it makes me feel a little bit better about having carpal tunnel.