Kindness and the Internet

Have you ever noticed how much the internet seems to have changed the way people treat each other? It's as though the internet has granted anonymity to everyone, so much so that they don't feel responsible for the way they treat others. Every blog or article seems to receive more than its share of downright nasty comments, and in a way that I don't believe they normally would without the ability that people have to hide behind an online screen name that one can distance from one's "real life" personality.

I'm not talking about disagreeing with people - in fact I love differences in opinion. I cannot imagine how dull and dreadful the world would be if there weren't different ideas and thought processes and moral codes, especially because interacting with people who differ from us in their beliefs allows us to intellectually and critically examine our own beliefs and to challenge ourselves to grow as people. What I am talking about, though, is the tendency that people have to determine that a difference in opinion means that they can neglect the rules of common courtesy. This is a dangerous behavior pattern, especially at a time when our interactions with others happen increasingly online and less and less in person.

It's not exactly a big secret that I'm pretty darn liberal. I often hear people, on either end of the political spectrum, say things like, "I could never be friends with a Republican/Democrat," depending on their own leanings, and I think that there was a time in my life when I felt the same way, whether I'd have admitted it or not. For the most part, all of my friends were liberal, and with those who weren't it was as if I would look at them in wonder, thinking, "So-and-so is so smart and nice; how could she be a Republican!" I was making instant value judgments about all Republicans - that they were less intelligent and less compassionate than I, even when faced with direct evidence to the contrary. It was only once I got to college that I began to see that each group was composed of all kinds - smart people, not-so-smart people, kind people, mean people, rich people, poor people, etc., and just about in equal measure as well. Over time I stopped getting quite so emotionally upset when people would disagree with my views, and I learned that it really was nothing more than that: a difference of opinion that didn't have anything to do with that person's merit.

There are exceptions of course - I still cannot deal with people who are racist, homophobic, or otherwise intolerant, and maybe that is my own form of intolerance. In my book, though, if you're going to blatantly discount someone's worth because of some superficial quality like their ethnicity or their sexual orientation, then you've lost the right to ask others to treat you with respect. Right now our world is teetering on the brink of disaster, and I may be naive and simplistic, but it seems that a lot of it is because of intolerance; intolerance of different religions, skin colors, cultures, and beliefs.

I think I've mentioned before that I'm a doctoral student studying psychology, and one of the phenomena in which I'm most interested is the formation of prejudice and intolerance. A lot of it is actually routed in the way people attribute blame. Most people are predisposed to blame others' shortcomings on internal factors - "She's just a mean person," or "Wow, he's really stupid," instead of realizing that someone else may just be having a bad day or be tired. We also ascribe others' successes to external factors - "His mom must have helped him get a good grade." Yet when it comes to our own shortcomings, we immediately write them off as being caused by external factors and proudly claim our successes as being caused by nothing but our own greatness. In reality, it's usually an equal combination of both of these things - with each "failure" there are external factors that led us to where we ended up but also choices that we made. The same is true for our achievements. Yet it seems much easier to unconsciously do our best to elevate ourselves to great heights and to put others down. And of course, once we ascribe a negative attribute to someone, the next step our silly and oh-so-flawed human brains unconsciously make is to generalize that negative trait towards everyone else like that person. This is going to seem silly, but a while ago someone whose blog I only haphazardly follow received a rather judgmental comment from someone who said that she was a psychologist. So what did the blogger (and many subsequent commenters) do? They started trashing psychologists, saying that they're all the most f*cked up of all, that they always screw up their kids, and so on and so forth.

I will truly never understand how people don't realize how dangerous that is - that is EXACTLY how prejudice, stereotypes, and intolerant behavior start. We certainly don't need to wrack our brains to recall examples of how treacherous that is: simply look back to the Holocaust, or slavery, or the systematic destruction of Native Americans, or the genocide in Rwanda, or thee current genocide in Sudan, and on and on and on.

I can't help but wonder if people feel compelled to respond to criticism this way because they can't think of a way to respond that rationally disagrees with the other person without being cruel, or if it really is just a desire for vengeance. I don't know which is preferable.

Sometimes I feel like we should all behave as though we were debating in school. Not that we shouldn't have fun and do so in a less restrictive way than would happen in an academic or professional setting, but if you're going to disagree with someone, do so courteously. I can't imagine anyone's teacher approving of his or her student saying, "The fact that you think that makes you a moron," so I don't understand why we feel so comfortable behaving that way once we've left school. After all, anyone could be reading what you're writing - your teacher, your mother, your grandmother, and, perhaps scariest of all, your kids. If we really want to make this world better for those who come after us, isn't the best thing we can do to teach them to be respectful to each other in a way that will discourage the sorts of needless conflicts we've endured?

The Seventh Afghan Square

I finally started knitting again as of yesterday, and I finished my seventh square for M's baby afghan. I think it's my favorite so far - it's a little wider than I thought it would be, but once everything's blocked and put together they should all stretch or shrink to be mostly the same size.

On a health-related note, I'm still taking it really easy and just trying to let my body recover and re-absorb everything it was deprived of during my infection. Luckily (knock on wood), my port still seems clear, so I'm hoping that saga is over.

But back to the knitting, here's the square:

My Best Friend

Aside from my husband, I would say that I have three real "friends," or at least only three without whom I would feel difficulty functioning. I have a great many pleasant acquaintances: people whose company I enjoy and for whom I feel some sort of affection. But my life turned out very differently than I thought it would (doesn't it always?), and very differently from that of most of the people I once considered friends. I married someone who lived 500 miles away from my family and friends, and who was just very different from the people I knew. His interests were often at adds with those of my established acquaintances, and he just didn't mix so well with the people I knew. This was fine with me - I think in some ways he gave me the courage to admit that I didn't feel much of a connection with these people and to go my own direction. Before I met my husband I was the sort of person to form friendships with anyone whom I found merely tolerable, and as such I think I lacked really meaningful relationships, with a few notable exceptions.

Of my three friends, only one is someone I was close to before meeting my husband - in fact she was, and is, my dearest friend. I met her in my freshman year of high school, and she instantly became one of my favorite people. We are so different: she is athletic while I am somewhat frail, she loves to go out and party while I'd rather stay home and read or watch a movie with a few close friends, and she is reserved about her feelings while I am overtly emotional and communicative. In fact, for the first four years of our friendship I had no idea that she thought of me as her best friend; I knew that she liked me and enjoyed spending time with me, but it never occurred to me that she really felt strongly about our friendship until I got sick. She started showing up at my house while I was bed-ridden, leaving notes or little goodies when I was sleeping or too sick to have visitors, and bringing DVDs or funny books to read to me, if only for a few minutes, when I was well enough. Whenever I was hospitalized, she somehow found out where I was within a day of my arrival, and she would show up with balloons or a silly stuffed animal or a trashy magazine, despite her acknowledged hatred of all things medical. She became increasingly dear to me, and when she went away to college and I went to school near home I really felt her absence, more than that of anyone else. She was the first friend to meet my husband, and they absolutely adored each other - he now considers her one of his best friends and vice versa. She was the maid-of-honor in my wedding, and the one person with whom I could never wait to share the details of my wedding plans. She lives about two hours away now, so while we see each other less than we'd like, we exchange emails and phone calls at least once a day. She's the only person, aside from my husband, whom I would say knows abslutely everything about me. She's also my only "healthy" friend, mainly because she's the only one who understood, without me ever having to tell her, exactly how to treat me - like I was exactly the same person I'd always been, just with a little extra understanding. I know she worries about me (somehow she always seems to find something she really has to come home to do whenever I'm really sick), but she never makes a big deal about my health; in fact she rarely even mentions it. Our friendship is the same as it ever was, except maybe now we're both more open about how much we care for each other. She effortlessly adjusts to my changing physical status without a single comment, always understanding if I have to change or cancel plans or if I'm not as quick to return phone calls or emails. I can't be sure, because true to form we've never talked about it, but I think this is partly because she was raised by a single mom who happens to be blind (and who is also one of the best moms I know), so she understands the adjustments that need to happen to accommodate someone whose physical abilities are different, and also understands how uncomfortable those adjustments are for the person for whom they're made.

There was a time in my life when I would've been embarrassed to think of myself as only having three true friends. I guess I used to think that popularity was measured by how many people you have at your birthday people, or something. I don't know why it took me so long to figure out that the cliche is right: that quality is more important than quality, but I know that my best friend had something to do with teaching me that in the end.

Scared

Things are getting better with my health, but there's definitely a long journey in front of me to get back to my "baseline" condition. I am absolutely amazed at how quickly things can get bad, and undo years of work to get to a stable point in my illness. About three years ago I was bed-bound for about a year. It was during and right after the period when I was diagnosed, and I was being shuttled from specialist to specialist trying various treatment plans. My illness has no cure, and there's not even one excepted treatment - you can only deal with the complications as they occur and try to be cautious and prevent further damage. Because of damage that's been done to my internal organs and my vascular system, I receive IV medications and nutrition overnight every night, through an implanted central line that shuttles IVs from a port in my chest through a long catheter leading to my superior vena cava, where they are disbursed throughout my body in my bloodstream. I've been getting nightly IV treatments for over two years, and I'm on my fourth central line. The first three were less permanent, while we waited to make sure that this treatment was feasible, and I lost them one after the other to two infections and then a kink in my line that caused a blood clot.

I've had this port, which is totally implanted under my skin (nothing sticks out) for just over a year now. Basically, to use it I pierce my skin and the rubber port underneath with a special type of needle, which is attached to flexible IV tubing and is affixed to my chest with a sterile, plastic dressing. Underneath the rubber top of the port is a reservoir connected to the long catheter, so the liquid that goes into the reservoir eventually leaks into the tubing at the prescribed rate. I leave the needle in place for a week at a time, and then once a week I have several hours of needle- and tube-free time. Obviously, any foreign body has a risk of infection, and when the foreign body is connected to your heart and bloodstream, that infection can become deadly within hours. I have to be incredibly careful when hoooking up to infusions and even more so when disconnecting or connecting the needle to my port. A cost-conscious change by my home health supply company means that I've been getting a new type of dressing change "kit" for about three weeks now, which changes how I clean my port before accessing (inserting the needle). The general consensus is that these kits aren't nearly as effective as the old ones at cleaning the port site. Sure enough, after using two of the new kits, I ended up with what looked like an infection in the pocket of skin and tissue around the port itself - it was bright red, hot, itchy, and VERY painful. Luckily I didn't have a fever, and there was no red "streaking" along the path of the catheter that could indicate a tunnel or blossoming bloodstream infection. Even so, I followed protocol and hurried my butt up to the ER of my local hospital. Sadly, this isn't the hospital at which my primary doctor practices, and they're not exactly well-versed in rare disorders (like what I deal with).

I fought for my line to be saved, with just a course of antibiotics and a period of prescribed rest from using the port. I was deaccessed for five days, and wasn't getting my meds and nutrition, because every peripheral (normal) IV line inserted blew within a matter of minutes. Finally my PCP said that as soon as the redness was gone I could reaccess and resume treatment. Well, the redness was gone last night, and I reaccessed. It was definitely still sore, but everything seemed ok. I got my regular infusion last night, which was such a relief for my poor body, and we're working to double-up on some things to hopefully speed up my body's return to normal.

My temperature, though, is suddenly just a little above normal, and the site seems sorer than it had been. I'm still on my antibiotics, but I'm concerned that they're not doing the job. I'm going to reevaluate the options with my primary doctor tomorrow to make sure that I do everything I can to save this line. My primary health issue makes surgery a much bigger deal than it would normally be, and it took me months to recover from my port placement last year, which would normally be a minor surgery. I am terrified of having to go through three procedures - the removal of the line (which is surgery), the insertion of a more temporary central line (a minor surgical procedure), and, after the infection clears, the placement of another port. I am praying with every fiber of my being that I can hold onto this line and stave off any other infections. Needless to say, I am reverting to the previous, more expensive dressing change kits, and will absorb the additional cost myself if I have to.

A blogger I follow who lives in Canada reckons that her entire pregnancy, which included fertility treatments, and, horribly, the stillbirth of her beautiful son due to preeclampsia, cost her about $7, with the government picking up the tab for the rest. I pay a great deal for my so-so insurance and the massive amount of health care I need that it doesn't cover. And I, of course, am one of the unbelievably lucky ones, to have health insurance coverage at all when fully 40% of the country doesn't. I don't understand how we can abide sub-par care for way, way, WAY too much money. I've heard people who are against what they call "universal health care" arguing that the government would be able to make your health care decisions. Well, my insurance company just made mine, and look where it landed me. I have friends with my health problems who live in countries that have government-funded health care, and they seem to get excellent care, which is determined by their doctors, not their politicians. I'm not trying to turn this into a politically-motivated blog, but what does this say about our policies? People who need health care should get the best care out there, and it shouldn't cost more than it does to send a kid to college (which is another problem that you shouldn't get me started on). I have watched beloved friends declare bankruptcy and lose their homes because they had a health crisis. I just don't see why people think it's ok to abandon the very people who need help the most. There is so much that we could be doing to change this. I'm hopeful that we've gotten things off onto the right foot by choosing the right president for the job, but there's so much more that needs to happen. For starters, we have to be willing to swallow the cost of health care with higher taxes. Perhaps the way to really start is to remember what this country is all about and not throw people who are already down on their luck under the bus.

I'm sorry if this is preachy, but eventually, everybody has to say something.

Marriage and Illness

A few days ago, a blog I follow featured a story about a man who posted on a Christian advice forum, asking whether or not he should marry the girl he was dating. The problem, he said, was that she had Type I Diabetes, and he was concerned about how this would negatively impact his life, and his dreams. The blogger was concerned that the young man was viewing her illness as a flaw, as something that he had to overcome in order to love her. We all know that marriage is full of glitches and problems – no one is perfect and part of building a lifelong relationship with someone is overcoming those imperfections and becoming perfect as a couple, despite individual flaws. I cannot imagine, though, that a marriage can survive if someone married to a chronically ill person views that person as flawed because of his or her physical limitations. Several of the comments mentioned that certain people don’t seem to be cut out for marriage to someone who is chronically ill, and I just wanted to share my thoughts on this subject.

There certainly are people who cannot handle a chronically ill spouse! I have a progressive chronic illness, and I was very open about it with every single person I dated. I wanted them to understand that it IS more demanding to be with someone who's sick: not because it requires you to physically do or help more (although it can), but because it's emotionally draining. My amazing husband has to deal with the fact that my life expectancy is, well, less fabulous than we'd like it to be; the uncertainty of whether or not I will be physically able to have children (not just to carry or give birth to them but to care for them as well); the difficulty of very rarely being able to plan very far in the future, and even then occasionally having to cancel plans at the last minute; and so much more. Our monetary resources will also always be considerably less than they could be, because at least 1/3 of our income goes to my medical expenses.

I knew that my husband was the one for me shortly after we met, but when did I know that I was the one for him, and that he could handle all this? It would have to be the week (about eight months after we met) when he spent every moment in a hospital room with me, entertaining me during the day and sleeping in a rock-hard reclining chair during the night. I kept telling him to go home, that this wasn't fair to him, and he wasn't having any of it. He would not leave. At the end of the week, he asked me to marry him. He told me, later, that he was already planning on it, but that the week at the hospital solidified it for him, because we still had fun, even through all of that. Two years later, we’ve spent several more hospital stays together, and somehow, we still always manage to have fun. He is continually by my side, making me laugh, and doing whatever he can to help me through every setback. I truly believe that he keeps me sane through all of this, and he is most certainly the person who gives me the strength and the will to continually keep fighting.

We've been married for over a year and a half now, and we love each other more than ever. Honestly, I don't always get it - how could he WANT this life?? It always hurt when people (friends, family members, SOs) couldn't handle it, but I can't say that I blamed them - it's not ideal. I gave him every chance to change his mind; to walk away. And he wouldn't. He won't.

If this man from the advice site is really just asking these questions so that he makes an informed decision, then that is wonderful. However, if he has to question it so publicly and so strongly, I don't know if he would be the right person for her. No "answers" that he can get about what her illness is like and what it entails can prepare him for the reality. Besides, it could (and probably will) get much worse, and he'd better be willing and ready for ALL of it. In my opinion, you just "know" if you're cut out for it. Obviously you shouldn't jump into something like that with your eyes closed, but I believe that for it to work, anyone marrying someone with a chronic illness HAS to want the worst life possible with the chronically ill person MORE than the best life possible without them, if that makes sense. In a way, I think that's true for any marriage or relationship, but it had better be doubly true when marrying someone with a serious health problem.

If he actually views her illness as a "shortcoming" or something that makes them unequal, then he absolutely should not get involved with her. Illness has nothing to do with who she is - it's just something she deals with in her life. He can't be marrying her as his "chronically ill wife," but as his wife, who also happens to have a chronic illness.

There’s another side to this, too. Anyone, at any time, can develop an illness that can be life changing. People experience brain damage in car accidents or lose limbs or are paralyzed. People develop Type II Diabetes or Congestive Heart Failure or cancer. These things happen to even the healthiest people in the world – to marathon runners and Olympians and fitness instructors. Marriage vows are supposed to last forever, and it seems like the world’s worst tragedy that something as uncontrollable and random as illness should end a marriage. I understand that things happen and that divorces are often necessary, but those divorces should be because people at their cores are incompatible, not because of someone’s physical challenges. In a way, it seems that if people question their ability to marry someone who is chronically ill, they might be better served to avoid marriage on the whole – current good health is no guarantee that it will stay that way.

I guess the bottom line for this young man is that if he asks this question and doesn’t receive an overwhelming answer from within himself that he needs this woman in his life no matter what obstacles they face, then he probably shouldn’t be with her. Marrying someone with a chronic illness means that you will go through hell, but you’ll be going through that hell together, which, to me, is infinitely preferable than the possibility of eventually going through it alone.

Ugh!

I meant to post yesterday (Thursday), but I was in the hospital. Nothing too serious, just the run-of-the-mill hospitalizations that result due to complications from my chronic illness(es).

Unfortunately, the outcome of this hospitalization is that I'm not allowed to sit up except for when I'm eating or going to the bathroom, so no knitting until probably about Tuesday. I am really, really frustrated, mainly because this particular complication appears to have been caused by some really ignorant decision-making by my home health care company - a decision made, of course, for the sake of cost. I'm sure that you will all hear more about this topic in the future from me; for obvious reasons I am pretty passionate about it.

I really don't have much of a post ready at all (although I'm working on one that I'd like to post tomorrow), but I just wanted to explain where I've been and why there won't be any knitting posts for a few days, much to my dismay!

The Sixth Afghan Square

Here is the sixth afghan square, which I just finished knitting. I like it - it reminds me of waves - but it's definitely not my favorite. I think it would have gone over better if I had used multiple colors, but that's not the scheme of the afghan, so oh well! Hopefully it will work in the afghan as a whole. We'll see! By the way, if the color of the yarn looks a bit different in this picture, it's because I finally figured out how to use my computer's photo editing capabilities to adjust the color to a shade more like what the yarn looks like in person.