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.

Unbelievable

I mentioned in my last post that I already had a post brewing in my mind that I was postponing. Well, this is that post.

I don't know how many of you have heard or read about this, but it turns out that the doctor who conducted the SINGLE study that supposedly showed a correlation between the MMR (Measles, Mumps, and Rubella) vaccine and autism in young children actually falsified a great deal of his data. Here is the article I first read on the story, from the London Times Online. I am absolutely appalled and furious at this doctor, who, first of all, studied only 12 children, and, second of all, included symptoms in the published paper that were never recorded in the treating hospital's records, indicating that they never actually occurred. In addition, a large number of his patients were displaying signs and behaviors indicative of disorders in the autism spectrum before receiving the vaccine.

Now, please understand that I am not attacking anyone's decision regarding whether or not to vaccinate their children. While I believe that vaccines, with whatever risks accompany them, are necessary and preferable to leaving children unprotected from these horrible (and often fatal) diseases, I understand that other people have other points of view, and that there are many reasons why a parent might choose not to vaccinate his or her children. What I have a real problem with, though, is the fact that one of these "reasons" now appears to be false. Children whose parents have decided not to vaccinate them have died, and in my opinion those deaths should be on this doctor's head. Some of the blame lies with the media, who publicized and aggrandized this study, making it seem as though it proved a definitive causative correlation between vaccines and autism. I have heard of parents who have had autistic children, and, after learning of this study and the possible link, have decided not to vaccinate their subsequent children. Imagine the anguish felt by these parents in making this decision: should they leave their child open to life-threatening diseases that can easily be prevented, or should they risk subjecting that child to the disabling force of an autism spectrum disorder? The amount of pain, suffering, and damage this manipulative and amoral man has caused surely cannot be measured, and I have no doubt that it will continue to reveal itself over an immensely long period of time. While I do not consider myself to be a vindictive person, I find myself longing for responsibility to be taken, and for justice to be achieved in some way; at the very least through the revocation of this "doctor's" medical license.

I am currently getting my doctorate in psychology, and as such I have been exposed to and participated in a reasonable amount of medically-related psychological research projects. Before ever beginning our first study, we went through an extensive course on psychological and medical ethics as related to research, and the idea of someone ignoring these regulations and knowingly causing so much harm (even indirectly), is absolutely incomprehensible to me. Whatever happened to the Hippocratic Oath?

First, do no harm.*

* I realize that this exact phrase is not in the Hippocratic Oath, but it accurately expresses the overall meaning and intention of many of the actual statements.

Embryo Adoption

In my post about having children in spite of my illness, I mentioned something called "embryo adoption." For those not in the know, when a couple uses IVF (in vitro fertilization), normally more embryos are created than are actually used. After the IVF process is complete, the couple can choose one of three options regarding the remaining embryos: they can be donated to private medical research (since research on embryos is not currently funded by the government - a source of endless consternation for me, since they could do SO much good), they can simply be destroyed, or they can be donated to another couple who, for whatever reason, cannot have children that are genetically "theirs." In most cases, couples looking to use these embryos can get information about the genetic history of the donating parents. Sometimes this includes information about the physical features of the donating couple, but parents can also choose to only receive a couple's medical history. The "adopting" couple then uses IVF to transfer the embryos to the mother, and, hopefully, a pregnancy (and then a healthy child) results.

In my case, my husband and I would only consider this option if a geneticist advised me that I would most likely transfer my illness to any potential children, and even then we might not choose to pursue this option. It is really nice to have backup options, even though this might not be DH's and my first choice. Ideally, we would love to naturally have a child, and if that could not be done, we would love to adopt a child in the traditional manner. However, after doing extensive research, most adoption agencies (and women pursuing private adoptions) automatically exclude people with serious health issues. Let me make it clear that I would never bring a child into my life if I were not absolutely sure that DH and I could take care of that child in every possible way. However, there are always unknowns in life - my health could get worse to the point where we would need help caring for the child, and, obviously, there is always the possibility that my life might be shortened by this disease. These, though, are outcomes possible for everyone, regardless of whether or not they are already chronically ill at the time they have or adopt a child. I wish that, in a world so full of children needing loving homes, adoption agencies could open their minds a bit in terms of their concept of what constitutes a healthy home, but I know that will take time. People who have never been chronically ill have a difficult time understanding how it does and doesn't affect your everyday life. The bottom line is that, when you're sick all the time, that becomes your new "normal," and you develop methods of functioning at that level, even if those methods might seem a little unconventional to others.

I got a little off track, but anyways, what embryo adoption offers is often a chance for couples to have a child without the strict constraints one faces in a traditional adoption, and to do so without the prohibitive cost of using anonymous donor eggs or sperm. Instead, one can have a child merely for the cost of IVF, and possibly some fees for the agency providing the embryos.

After doing some research, though, I find myself concerned with and bothered by the connotations that embryo adoption has picked up. In addition to fertility practices, which have offered these embryos for donation to infertile couples for a long time, embryo "adoption agencies" have formed, usually with strong Christian affiliations. As one might imagine, their "angle" is to present these unused embryos as children needing to be rescued by people who can carry them to term, and shepherd them to the lives they deserve. And to be honest, that makes me about a mile beyond uncomfortable. I'm pro-choice, and I have NEVER believed that embryos are just little children. They're just clusters of cells that have the potential to become children, or that have the potential to foster medical breakthroughs, or that may just never serve any tangible purpose, all of which are perfectly acceptable outcomes. These organizations also usually have just as strict requirements for who is "elligible" to be an "adoptive" parent as well, and they usually charge quite a lot for the process of "matching" adoptive donor embryos to the couples they consider appropriate. In fact, this whole process has made me really uncomfortable with even the term "embryo adoption." In a way, it seems like attaching the term "adoption" to the process of acquiring an embryo is just another propaganda opportunity for the religious right to emotionally convince people that life begins at fertilization. In fact, it appears as though they've now pushed the deadline forward from conception to fertilization. Amazing, huh?

I obviously have no idea how this entire journey is going to end up, especially since DH and I don't plan on having kids for at least a few years. However, the deeper I get into each of the options, the more problems I find. This children stuff is messy business, isn't it?

The Fifth Afghan Square

I just finished the fifth square. I hadn't done any knitting in a few days, so it was wonderful to get back to it and feel productive again! I'm finding that with each square I knit, I get more emotional about it. You see, the mother-to-be, who is a dear, dear friend, has a progressive illness, and yet she is overcoming this to become a mother through gestational surrogacy. With each stitch I knit, I feel my own hope that I might someday achieve the same thing blossom. This wonderful friend, whom I'll call "M," has done so much to me - she was the first person I met who was in a similar situation, and she has taught me so much. She is continually there for me, and, best of all, she has allowed me into her lovely life because of her own desire to help me achieve my dreams of success in motherhood, and in my profession in the health care field. I cannot wait to meet this child of hers. I've knit lots of baby blankets in my life, often for babies who were technically "closer" to me than this one will be, but this is absolutely the most important and significant one I've ever made. I feel like I'm knitting so much more than a baby blanket; like I'm knitting love and security and potential with worsted weight yarn and size seven knitting needles. I can't wait to finish this blanket and to give it to M and her baby. I hope that the love I'm knitting with will surround their lovely family forever.

Speaking of love, I hope that everyone had a lovely Valentine's Day. Mine was perfect - DH and I spent it quietly at home, and we cooked a delicious, romantic dinner together and baked some strawberry cupcakes, all of which we really enjoyed. I'm blessed with a husband who actually enjoys cooking with me! I love simple Valentine's Days - they always seem so much more significant, since you can really just focus on the love you share with people.

Fighting Fear

I've had a post percolating in my head for days, but something else has grabbed my attention, and I feel an overwhelming need to share it. Thus, the original post will come within the next few days, I expect.

My husband was in the military. He joined about eight months after we got married, and he loved it more than I could ever explain; probably more than I could ever even understand. It had been his dream to serve since he was about five years old, thanks to a long family history of valiant service and an almost obsessive love of military history (and worshipful admiration of WWII paratroops). My love has had his share of health problems in his life, and successful entrance into the military was certainly never guaranteed, and, in fact, when it finally did happen it seemed almost surprising, probably because our inner pessimists took over and assumed that, given our questionable luck, it would never work out. But, luckily, it did, and it led to a time in our lives that was equal parts bliss and torture. We were apart so much, obviously, which was so painful, especially when I would have my inevitable health crises and often land in the hospital, with no way for my husband to be near me. In some ways I think that was harder for him than for me - I am truly blessed in how much my husband loves me and wants to protect me and take care of me - since he felt absolutely powerless. Before, every hospital stay included him sleeping in a chair or sofa in my hospital room with me, sometimes for weeks at a time. His sudden absence was definitely jarring for both of us.

Even so, he gave me so much hope: hope that things can work out the way you dream they will, hope that maybe there are enough good people and things in this world to make a difference. I had peace in my heart knowing that he was doing the one thing he really wanted to do, and that he was there for all of the right reasons. We certainly aren't always politically aligned with the administration in power or the conflicts or assignments that our military faces, but my husband was there because he wanted to do whatever he could to give back to the country that gave him so much, and to keep me and the rest of his family (and really the rest of the country) safe. These reasons seem trite, idealistic, and naive now that I'm typing them out, but they're true, and even after some of his "bubbles" about the military have been burst, he still feels the same way. Being the long-time peace-nik that I am, I broached ideas of serving in a different way - working for an NGO, teaching, joining the foreign service, etc., but DH taught me that just as I had always dreamed of serving by working for an NGO, this was his dream. It didn't have anything to do with violence or war, but instead with love of his country and a desire to help others. The more I got to know him, the more I knew that this particular path was right for him, and I knew that I had to put my own reservations aside.

His job was one with a relatively high casualty rate; not the most dangerous but definitely not the least, either, and I confess that I worried every second of every day. For the most part I still functioned quite well, but if you looked closely at my life you would have seen me avoiding shows with military content, and especially anything relating to funerals. I had nightmares of him being taken away from me, and once I really got worked up, it took an eternity for me to calm down again. And of course, as any military spouse knows, you basically have to just deal with those fears yourself - your main job is to stay positive and supportive for your soldier.

Recently, though, my beloved husband suffered an injury that made him incompatible with the demands of military life, at least in the eyes of the powers-that-be. So he came home, grateful for the chance to serve, but heartbroken at the loss of that service, and feeling completely aimless. One would think that this would have ended my fears about losing him, but somehow, they haven't quite gone away. In addition to the absolute heartache I feel knowing that he's in pain, I still can't watch anything resembling a military funeral, and newspaper articles about military widows are enough to send me into uncontrollable fits of sobbing and hyperventilation. Somehow, this fear has gotten inside of my heart, and while my mind knows that he's home and he's safe, my heart hasn't quite gotten the message. And I would really like it to.

There's an HBO film coming out in about a week called "Taking Chance," a true story of a Marine Corps officer who volunteered to escort a fallen PFC on his final journey home. My dear husband called me into our office this afternoon, with tears in his eyes, and asked me to watch the trailer for this film. The result was predictable - both of us dissolved into puddles of tears. I don't know if I'm ready, if I'm able, really, to watch something like this yet, but I would like to be able to. I would like to continue to honor the unbelievable people who serve, and their phenomenal families, by, if nothing else, bearing witness to their pain, and offering up another voice into the chorus of support. I would like to do that much, at the very least. Someday I hope these wounds will heal; as our charming First Lady has done I would love to make the needs of military families and veterans my priorities, but I know that I can't, not yet. It's still too real, and too raw, and it still feels too much like looking into the face of a fate that I escaped by the width of my pinkie. I feel guilty, too, guilty that there are so many women being asked to suffer the unspeakable, when I have the one that I love right here next to me, safe and sound.

For now all I can do is this: hold my own veteran close and make him understand how much I appreciate everything he has done, and offer up my silent prayers for the safety and peace of everyone still serving.

In another HBO film (or miniseries, really), "Band of Brothers" (which happens to be DH's favorite film of all time), a German general who is surrendering gives a speech to his men, which is translated as such by one of the American paratroops:

"Men, it's been a long war, it's been a tough war. You've fought bravely, proudly, for your country. You're a special group. You've found in one another a bond that exists only in combat, among brothers. You've shared foxholes, held each other in dire moments. You've seen death and suffered together. I'm proud to have served with each and every one of you. You all deserve long and happy lives in peace."

These words could apply to absolutely any soldier, from any country, in any era, and I cannot think of a better way to explain the sacrifice these men and women make. After a career of war and fighting, I can't think of anything better to pray for for these wonderful people than peace.

Have You Seen This?

I certainly don't want to use this blog to advocate a certain political stance, but I just wonder if those of you who have a few moments could go to this website, watch this video, and consider adding your name to this petition, if you're so inclined. If not, that's obviously fine, too, but I would have felt rather guilty if I didn't at least ask. It's about fighting for love and equal rights for everyone, and I think it's a beautifully made message for a wonderful cause. Thank you!

The Fourth Afghan Square

I finished the fourth square today! This one was a little bit of an odyssey - I started with a different pattern, got a ways in, found some errors in the pattern and then decided that even if I corrected them the square wouldn't turn out as nicely as I want it to, so I picked a new pattern and started over. I'm very happy with the result - it's not like anything I've done before.

By the way: the order in which I've posted these is just the order in which I'm knitting them; I'm pretty sure that the final order will be quite different. When I'm done with all of the squares I'll arrange and rearrange them until I like the way the whole afghan looks before knitting the border.

It's My Life

The other day I was getting some coffee at a local café, and I noticed several young, professional-looking people sitting at a table nearby. There were three men and two women, and they were talking animatedly about recent developments on the TV show, “House.” I enjoy a medical mystery as much as the next person, so I became a fan of this show in its earliest days, and for the most part I’ve stayed abreast of the twists and turns of the plot. This season, one of the doctors working with House has Huntington’s Chorea, a degenerative, terminal, and torturous illness. The disease is inherited in an autosomal dominant manner, meaning that if someone who has the disease has children, those children will have a 50% chance of inheriting the disease. If the gene is present, it is dominant, meaning that you can’t just be a carrier – if you have the gene, you have the illness. This character recently expressed a desire to potentially have children with the man in whom she’s interested. The audience wasn’t informed of what, specifically, she meant by this – whether she wanted to give birth to children that are genetically hers, whether she wanted to give birth to children with donated genetic material, or whether she wanted to pursue adoption. This group of incredibly opinionated people, though, seemed to find all of those options absolutely abhorrent.

I sat there and listened, trying not to betray the fact that I was (1) listening to their conversation and (2) incredibly hurt by what they were saying, as they argued that people with similar genetic and medical predicaments should be prevented from having children, and that choosing to have a child that could be impaired by a severe illness and even exposing a child to the struggles of an ill parent was tantamount to child abuse. There is so much I want to say about this topic, so much that I think people need to understand, that I’m not even going to try to tackle all of it in one post. Right now I’ll restrict myself to the genetic aspects.

I have a severe chronic illness that, while not traditionally considered progressive, tends to cause increasing wear and tear on every organ and system of my body in a way that makes it increasingly dangerous and disabling. I don’t want to get into the gory details, but this disease is also autosomal dominant, again implying that any children my husband and I may go on to have possess a 50% chance of inheriting the primary gene mutation that has caused me so much pain. My situation, though, is different – my illness doesn’t come with a guaranteed death sentence or even a guarantee of severity. Some people who inherit this gene abnormality experience only musculoskeletal problems, and never face the secondary problems I have dealt with. Even so, there is no cure, and the only treatments are those that deal with the tangible problems caused after they occur. Of course being careful to always get enough rest, be very, very cautious with the amount and type of activity I undertake, and trying to keep my body otherwise healthy and well-taken care of can prevent unnecessary damage, but in the long run, it’s really just about dealing with the setbacks as they come, and constantly adjusting my outlook and lifestyle to each day’s new reality. My life is nowhere near normal, and instead it is filled with medical appointments, physical therapy, IV infusions, medication schedules, fatigue, and illness. However, it is also filled with an above-average appreciation for every single day and every single beautiful experience. Actually, I met my husband because of my illness, and stumbled upon my current career path in a similar manner. It’s taken me a long time to get to this place, but I think now that I no longer wish I had been born healthy – I’m grateful for all of the amazing knowledge, people, and experiences I wouldn’t have had in my life if my fate had been different. It becomes a completely different issue, though, when thinking about whether I would want my child to experience this life.

In a way it’s funny that I got so upset about the conversation in the café, since I haven’t even totally made up my mind about how or if I will go about having children. While traditional adoption isn’t an available option for me because of my illness, something like embryo adoption could be. I think what really upset me, though, is actually an extension of what bothers me with the argument against a woman’s right to choose. It’s the fact that people in this world want to take away my choices and dictate what the world looks like and who’s alive in it. In some ways it doesn’t just feel like they’re trying to limit my reproductive choices, but that they’re also saying that my life, somehow, is less desirable and less worth living than a healthy person’s life. Not to mention all of the ailments that strike out of the blue and are passed down from perfectly healthy parents. In fact, my own illness is the result of a de novo gene mutation – basically my parents had perfect genes that mutated somewhere along the path of procreation. There are no genetic screening tests for these illnesses, so there literally was no way of knowing that I would be so afflicted. But honestly, even if they had known, I wouldn’t have wanted them to decide not to have me based on the notion of sparing me pain. I’m glad I’m here and that I am the way I am, and I don’t believe that my life is any less wonderful or less productive than that of someone with no health problems. I believe that I have the potential to achieve great things in my life, and anyone who knows me knows that my illness won’t even come close to stopping me.

A friend of mine who has a progressive illness is currently expecting a baby. A baby who is genetically hers and her husband’s but is being carried by a gestational surrogate. Her illness is presumed to be recessive, meaning that it is believed that her husband would have to pass on the gene as well to create it in their child, which is unlikely, but still possible. I have never for one moment questioned her desire to be a mom, and while I believe that her child will be perfectly healthy, if (God forbid) he or she does have health problems of any kind, I know that no one in the world is better equipped to handle it or will take better care of that child than my friend and her husband. In a way, adults with chronic illnesses are uniquely qualified to take care of children with illnesses, because they already have established and competent systems of doctors attuned to the specific problems presented, they know what to look for, and they understand the care and attention necessary. I just wish that people would take these things into consideration before they make such harsh judgments.

I'm sorry this post is so long and I'm doubly sorry if it seems like a lecture, but I just want to encourage discussion and consideration of the other side of this subject. If i encourage even one person to take a second look and to be more tolerant and more open-minded, then this post has more than done its job. What I really want, in the end, is a choice - the freedom to make my own decisions without fear of judgment. Doesn't everyone deserve that?

The Third Afghan Square

I've finished another one! Back to yellow this time, and sort of a fan-like pattern. It came out a little bigger than I intended, but I figure that when I block all of the squares I'll get them to be mostly uniform. As I write this my gorgeous puppies are sprawled out sleeping next to me, and in spite of the somewhat sub-par day I've had, I find myself smiling.

Expect a health-related post tomorrow, I think.

Looking for the Line

People are so unbelievably complicated.

My dad, one of the funniest, smartest people I know, also happens to be an alcoholic who, as of yet, has been unable to get his drinking under control. He’s not the drink-until-you-pass-out sort, but more the type to drink enough every night to seriously impair his judgment and to make him pretty unpleasant. He’s prone to bursts of anger and ridiculously disproportionate reactions to even the smallest stimuli. But only minutes after one of these outbursts, he’s joking affectionately with everyone within range. I can’t figure it out, and as soon as I’m angry with him he makes me laugh, and then as soon as I’ve let my guard down he strikes again. I think my mom feels the same way. They’ve been married for just over 30 years, and I can tell that she’s really unhappy. I mean, I don’t think either of them feels that their marriage is exactly ideal, but she’s the only one who seems to really be having difficulty taking it. He makes her feel incredibly stupid, which is heartbreaking – she’s incredibly smart, particularly when it comes to understanding other people. She’s also an amazing musician: she got her undergraduate and graduate degrees in performance from two top music schools. She’s talked about leaving him multiple times, but each time he claims he’ll try harder, and she stays. I don’t know what I want her to do – it’s not like I want her to divorce my dad. I may be grown and married myself, but I don’t know if parents divorcing ever gets really easy or comfortable. Doesn’t everyone want to believe that their parents will be together forever? I just also don’t want her to be unhappy. She deserves a lot more than this, and I feel like I’m watching little bits of my mom’s incredible personality wither and disappear under the crushing yolk of my dad’s issues.

His dad is an alcoholic as well, although at 91 he’s definitely slowed down a bit. My dad’s mother died when he was two due to a pituitary tumor that grew particularly fast because of her three successive pregnancies in such a short period of time. I know that his dad loved her in the fairytale love sort of way that everyone dreams about, and that after she died he sort of gave up, and lost his ability to be emotional. I figure that’s a big part of why my dad has such difficulty with understanding other people’s emotional needs.

I am just searching for a way to make things easier for my mom, and a way to hopefully stop getting hurt myself. I haven’t experienced addiction for myself, and I understand that he’s really ill, so I would love to be able to help him as well. I just don’t know how to separate the alcoholic him from the real him anymore. They’re all starting to meld together and look alike, and I’m having difficulty not being angry at him, despite the fact that I understand that at least some of this isn’t his fault.

The Second Afghan Square

I finished my second square yesterday! I think it's pretty cute - it reminds me of little baby hats, which I think is obviously fitting. It was a real pain to do, though - I was already using two strands of yarn and there was a lot of knitting four stitches together, so my fingers are pretty sore today! It's really more of a "mint" green than it looks in this picture; my camera's just a little finicky about lighting.

The First Afghan Square

Another tidbit about my life, for anyone who's interested: I knit! I'm currently working on a baby afghan for a very close friend's baby, who is due to arrive in May. I'm making it sort of a patchwork of different squares, each a different knit pattern. The squares will alternate between light yellow and light green, with a cabled light blue border in between each square and around the whole afghan. The baby's gender is currently unknown (They should have been able to tell several weeks ago but he/she was being uncooperative!), so I wanted the colors to be very soft while still being gender-neutral. In the end it will be four squares by five squares, and each square is about nine by nine inches, and the cable border is about two inches wide. It's based on an afghan my mom and I made before I started college, but in that afghan, each square was of something significant in my life or based on a sweater or knit that my mom had made me as a kid. This afghan will just be textured patterns and no "pictures," and obviously they're just random patterns that I liked as opposed to ones that have particular significance, but I think it'll be pretty awesome all the same. I thought I'd go ahead and share pictures of each of the squares as I finish them, and then eventually share the finished product. My friend's baby shower is in late March, and I'd LOVE to have finished it by then, but I think I'm dreaming. Anyways, here goes nothing! I hope you like it!

Braving the Blogging Universe

I have flirted with the idea of starting my own blog for a couple years now, always pausing mere seconds before clicking the magic blog-creation button, somehow halted by my fears of inadequacy, loss of privacy, and, of course, writer’s block. I won’t lie, I’m still scared – I’m scared beyond what I think is reasonable for starting what should be an anonymous blog. However, I feel like the time has come, so I’m looking my fears in the eye and trying not to let them define me or imprison me.

I found a really awesome blog community (or group of communities) about a year ago, at a time when I was really struggling and feeling completely alone. A group of incredible women have allowed me to get a glimpse into their lives, and their beautiful writing, awesome intelligence, and endless courage have made the temptation of blog-hood even more enticing, and I can hold out no longer! I had commented on these lovely blogs off and on starting a few months ago, which in itself induced a little bit of anxiety, but so far, nothing but good has come out of the entire experience. In fact, the other day I got my first response, from a terrific woman, who has encouraged me to branch out and establish my own little “bit of earth” in the always fertile blog universe. And then tonight, I happened upon a new blog, and was absolutely astounded with the courage and honesty of its author. This woman uttered an admission that she knew might bring her controversy and difficulty, but she did it bravely and beautifully, and I was moved to tears by her willingness to share so much of her life for the benefit of others.

This woman, you see, told the world that she had an abortion, something that most women keep secreted away, for whatever reason. Judging from this woman’s previous posts, she, too, feared “going public,” but she got past it. So in a way, this blog is a way for me to start bearing witness, for me to start saying that I don’t think women should have to be embarrassed or afraid of judgment. So as much as it terrifies me, I want to join this woman. I made the same choice she did a few years ago, in between my two losses. And for fear of judgment and cruelty, I didn’t tell anyone, and now I worry that keeping it a secret just added to the culture of fear and secrecy surrounding this decision. Women should obviously have every option to keep this decision as private as they want to – honestly I don’t think anyone ever has a “right” to know. But women shouldn’t be forced to keep a secret about a perfectly just and legal decision out of fear, because there should be nothing to fear. I am tired of oppression, in all its forms, and the stigma surrounding abortion is just another form of oppression. No, it’s not ideal, and it’s certainly not something I ever wanted to do or face. But I had to, and despite the hurt I felt (and still feel), I am confident I made the right decision. My reasons are immaterial, but suffice it to say that I felt that it was the only choice, and in fact I would still support that whole-heartedly. Please also recognize that until you know every detail of my story (which I am not ready to share and may never share), you don’t know why I did it or what other options I had, or even why or how I found myself faced with the choice in the first place. And please know that the pregnancies I lost were very much wanted, and that I desperately want children in the future. Unfortunately, many circumstances (including my own progressive chronic illness) keep that prospect reasonably far off in the future.

You are all more than welcome to disagree with me, but I can’t let the fear of disagreement dictate my decisions or my life anymore. So here I am, posting on a blog and baring my soul and my past. I realize that the somewhat polarizing nature of my very first post may make my blog a little less than universally appealing, but all of a sudden I’m ok with that.

I don’t really know what kind of blog this is going to be yet. It certainly isn’t just about reproductive issues, or politics, or beliefs, or my life. For now it’s going to be exactly what it was for this post – a place for me to talk about things that move me, about topics to which I feel I can contribute. I can’t guarantee any sort of regularity of posting, correct grammar or spelling (although I do try quite hard!), or that this blog will ever really get “personal,” but I can promise that I will try to always be sensitive to the needs of others, and true to the needs of my heart. If you choose to follow along, let me thank you, from the bottom of my heart, for reading.