Monday, November 21, 2016

Not Fade Away

     I've been in a state of shock/anger/mourning/disbelief since the election, and many of my friends and family are in the same place. I was going to write much sooner, but I couldn't stop my thoughts long enough to get a coherent sentence together. It's still a struggle, but keeping away from social media and 24/7 news sites helps; there's just too much for me to process right now, and my anxiety levels are through the roof. I'm not going to get into ninety-nine of the one hundred reasons I desperately didn't want the current president-elect to win that title, because that's not what this blog is for. Right now, I'm taking it one issue at a time, and looking at this through the lens of my husband's disability.

      The first thing my husband said to me once we realized the election results showed a picture we couldn't believe was true, was, "Well, I guess I'm officially just a useless cripple again." I could have cried, and if I wasn't so stunned by what I was seeing on CNN, I probably would have.

     For me, I suppose it goes back to seeing the current president-elect at a campaign stop mock a physically disabled reporter. Are you kidding me? The fact that he a) did that in the first place, and b) that it didn't stop people in their tracks from considering him a viable candidate for the leader of the country just kills me. Does the disabled community really mean so little to our society as a whole that this open and ugly mockery passes by without significant comment? That's what my husband took from it, what he felt when he saw it - that he was not valuable, that he was not a contributing member of society, and that he was not worthy of respect; the actions of our fellow countrymen just validated those feelings, in my opinion.

    Beyond the practicalities of what this administration may mean for people like my husband and I, what does it mean for us on a more personal level? I can tell you it's certainly changed how I view those family members who I know voted for the Republican candidate, and that has nothing to do with his political affiliation, though those who know me know I'm much closer to a liberal Independent than I am anything else. I am not dead-set against any affiliation, and even though I disagreed with almost every opinion our most recent Republican president had, I still thought he was an inherently decent man who believed he was doing the right thing with the choices he made. No, it has everything to do with actively supporting someone who so clearly does not value or respect those in the disabled community. To them I say, "How could you?"

     I'm not interested in rationalizations, I'm not interested in hearing about how you want "change". At what cost, though? What price are you willing to pay to bring about that incredibly vague "change"?  Are you willing to forgo basic human decency and love for your fellow man to achieve the end result? Are you willing to step on the backs of some of our most vulnerable to get what you think you want? I think you are.

     I think that deep-seated dislike for and distrust of the disabled (believe me, it's there) that exists in our society at large has been given a legitimization, and a face, and a name. I don't think it's any one face or name in particular, but there is now more than one in power from which you can choose. Now, you can point to someone and say, "See? He did it, and it's not that bad, it was just a little thing." The hell of it is, though, that it's NOT a little thing, and it IS that bad. My husband is a goddamn human being, with feelings and friends and value. He's worked hard since he was sixteen years old, and even now, though he would easily qualify for Social Security Disability, he works. He gets up five days a week, whatever level of pain he's in, wherever his head is at with regards to his anxiety and depression, and he does it.

     Part of that is practical, because we simply can't survive on one income. I know many, many people think that there is a whole section of society that just collect disability checks and live like kings, but that's not actually how it works. Maybe I'll get into the details of it all at a later point, but not right now. The bigger part of why he does it? Because he lives in fear that if he does, the rest of the world will then view him the same way he sees himself - useless, a part of the population that's nothing more than a nuisance to be dealt with. The great irony here is that, despite his best efforts, it's happened anyway.

     We've talked about it many times since November 9th, and we've both agreed that it's changed how we see people. Our friends, our family, strangers, doesn't matter who. I myself am having a very difficult time with close family members who say they love my husband and I, and would do anything for us. I don't doubt their love, but I'm not sure if it's the same love I thought it was. You say you'd do anything for us - anything but stand up and add your voice to ours when push comes to shove?

      So, even though I just want to disappear into a book for the next four years, I have to keep working, keep talking, keep trying to move the conversation along. The tiny, tiny, tiny silver lining that comes from this is that it's given me a renewed sense of drive to keep up with this blog on a more consistent basis. I know how very tiny my corner of the internet is; I'm not delusional, just pissed off, sad, and scared. As they say, though, one tiny spark can become a fire, if you don't let the light go out.

Thursday, August 11, 2016

Cruel Summer

     "Are you ever going to blog again?"

     So asks my husband, probably about twice a week. The need to get things out of my head hasn't diminished, just the drive to actually do it. Hell, I'm not even journaling as much as I used to, and that's a habit I've had for almost twenty years. I don't know what it is, but it makes me uncomfortable and restless. I don't like keeping the sticky thoughts inside, because they certainly cause cranial traffic jams with alarming frequency, and it affects my ability to focus on things I really need to do, like get my eating habits in order, and figure out ways to straighten out kinks at work. I can't focus lately, though, and I think this is why.

     This has been a rough summer for my husband and I, not gonna lie. We started the year off with him not working for four months thanks to red-tape bullshit, and we still haven't recovered from that. We're doing our best, but it's damned hard to stick to a budget when things, medical things, keep popping up right and left and sucking up any excess in our checking account. I've said it before, and I'll say it until I'm dead - people don't realize just how valuable being healthy really is.

     Our summer started on a less-than-pleasant note when I fractured my elbow carrying groceries one night, and it hasn't really gotten better since. For once, it was me who needed medical care, including multiple trips to an orthopedist, an MRI, and physical therapy, so that was something new and different in our household. My husband was a wonderful nurse throughout, and I know it made him happy to be able to take care of me. (Obviously he wasn't happy that I was hurt in the first place, but you get what I'm saying.) He carries around a lot of  (unnecessary) guilt which stems from the fact that I'm not only his wife, but his caretaker.

     I actually found a really good article about that the other day, which I plan to blog about at a later date, but for the purposes of this entry, let's just leave it at, I think it made him feel more needed and less of a burden. (His words, not mine, before you jump on me for my phrasing.) So, that was one good thing to come out of it. The added stress of a broken wing, though, was un-fucking-pleasant around here. I was irritable because of the stupid injury, and the stupid cast that I had to wear for almost two months, and the million little things it affected for both of us.

     I know, in the grand scheme of things, it could be worse. Well, yeah, it can always be worse - I could've cut the damn thing off in a freak wood-chipper accident, but that's not what happened. What happened was, I, the "healthy one", the caretaker, the one who always has to be ready to go should something happen with my husband's health, was functioning at 75%. Seeing that typed out, it actually doesn't seem like a thing that I should've worried so much about, but I did.

     I think there's always an underlying current of fear in our house, that something catastrophic to my husband's health will happen at any moment, and me being semi-out of commission just added to it. That's not a completely unfounded fear, by they way. In the nearly six years we've been married, health catastrophes have happened on more than one occasion. And no, that's not hyperbole; I mean, had we not had our amazing network of parents and families and friends, we would have lost the roof over our heads. Not because we'd fucked up, but because the society in which we live is not kind to those who aren't able-bodied. It was, without a doubt, the most terrifyingly uncertain period in my life, and to this day, I haven't been able to shake the fear that we're just one sick day away from being right back in that place.

     So yeah, this summer was hard. We did it, though, thanks in no small part to our network, and also the fact that my husband and I somehow both ended up with good employers. Maybe it's because of past experience, or the fact that I see every day what happens to people when their employers just don't care about how health issues can and do affect their ability to work, but I get really twitchy when it comes to having to take off work for any type of illness. I like to believe I'm slowly getting better about it, but the panic I sometimes feel whenever my husband has to call in more than once a month tells me otherwise.

     It's going to get better, though, because this summer's almost over.

Thursday, May 12, 2016

Out of the Woods

     "Too alarming, now, to talk about,"
- Foo Fighters, "My Hero"

      It is, you know. Depression and all of its god-awfulness is still, in 2016, something that we do not speak of in polite society. It's something that my husband has to fight silently, because it's so horrifying to him that it's essentially robbed him of his speech. And this is a guy who's easily as well-read as I am, a huge bookworm. It's still a diagnosis that gets you ostracized from the cool kids' lunch table, a diagnosis that's more difficult for my husband to swallow than any of the thousands of pills he's taken in his lifetime. It's a riddle that we have not been able to even come close to solving, and we're both bloody from the brick wall we've been slamming our heads against. 

      How does that imagery strike you? A vast wall that stretches on endlessly, no break in the bricks, no toeholds that can be used to scale it, just a cold, cold expanse that leaves you feeling hopeless and trapped. I imagine that's what it's like in my husband's mind, and I can't understand how he's still able to function, day after day. I've talked to him about this endlessly, mostly attempts to understand, even a little, what it's like for him, so that I can figure out a game plan (because my family loves nothing more than a good game plan) for helping him. That, though, was equal parts naivety, arrogance, and blind faith. 

     This is so far beyond either of us, such deep water to be lost in. We've tried everything we can think of, everything the doctors have recommended. He's been to at least six different psychologists/therapists, including one intrepid soul who informed my husband that his Marfan's could be cured with the right diet, one that was heavy with leafy greens. A) My husband's on warfarin, a blood thinner, and has been for the past 15 years. Leafy greens are heavy on vitamin K, which counteracts blood thinners, and are generally something that he avoids so as not to mess with his INR levels, and B) IT'S GENETIC, YOU MORON, YOU CAN'T "CURE" SOMEONE'S GENETIC STRUCTURE. 

     He's been prescribed several different psych meds, including one that interacted badly with his daily cocktail of painkillers, blood thinners, and beta-blockers, and resulted in him suffering his first TIA (transient ischemic attack, or a mini-stroke; at least, that's the explanation the doctors gave us for what happened.) Through trial and error, we seem to have hit on the right medicine for the time being, though I'm afraid it's either losing it's efficacy, or things are getting worse; possibly a combination of the two. 

     He's been hospitalized for it, which was a nightmare that I haven't been able to bring myself to write about, four years later, and one that, it turns out, he suffered needlessly, because when the staff psych came to visit him for the first time, he realized almost immediately that there was no need for my husband to be there. He's tried support groups with no luck, because no one seems to want to talk about the nitty-gritty, and those are the issues that he's desperate to discuss. Hell, I've even reached out to a national organization to see if they could suggest a counseling organization that had experience helping those with chronic illnesses, and they came up empty-handed as well. How do you find your way out of the maze when everything's a dead end?

     I'm not giving up, though, I can't. I know my husband's exhausted, both from what's going on in his head, and from the daily struggle to keep going, keep presenting an appearance to the world at large that he's not suffering. I can only imagine that it's twice as draining for him as it would otherwise be, because he's also trying to convince his body that it's not coming apart from the inside, that it's not in pain every second of every day, and that it can keep moving. If he can keep going, then I sure as hell can.

     The current plan is to try couples' counseling, not because our marriage is in trouble, (like I've said before, after everything that's happened in our five-year marriage, we're as close to bulletproof as any couple could be) but because I'm hoping that if we attack this together, we'll make some progress. I'm his partner in all things, and damned if I'll let him wander around in the dark by himself. We haven't tried this approach before because he's easily the most stubborn person I know besides myself, and he wasn't comfortable with me being there. It's an intensely vulnerable thing, seeking help for your head, and it's also a personal thing. So, I didn't push the issue.

     Now, though, he's so tired that I don't think it matters anymore. I don't want him to feel that broken-down, that he just doesn't care what I hear, but maybe this is an instance of something that has to hit rock bottom before we can get anywhere. We've both been in free-fall, to some degree, him falling faster and more blindly than me, for awhile, and maybe we have to stop falling and gain our footing before we can start climbing that damn wall

Monday, April 11, 2016

Too Much

     Still here. I've had too much occupying my brain lately, ever since my husband and I attended the Heartworks St. Louis fundraiser gala last month. It was a new experience for both of us, and not just because it was the first outing we've ever had as a couple that required fancy-fancy outfits. It was a night that left us both kind of tilted on our respective axes, and the world revolves differently now, I think.

     We were both of us unprepared to be among others like my husband, and I know that sounds isolationist. Maybe it is, to a degree, because my husband has, with one or two exceptions, actively avoided all contact with others who also have Marfan Syndrome. It has nothing to do with them, and everything to do with him, and the self-image/self-worth issues that he struggles with are demons of his own making; you have to understand, "hard" doesn't even begin to encompass how it was for him to see, literally come face-to-face with things that he has trouble dealing with on a good day.

     It was something of a complete mind-fuck for him, to be in an environment where he was no longer the outsider, no longer a freak, and certainly not a less-than member of society. For a guy who's been by turns ostracized, ignored, and made to feel like less than zero - it was an experience and a half.

     Again, with very few exceptions, that was the first time he'd ever been in a room with others who have Marfan's, and even more than that, knew that he did, too. I know he was self-conscious, despite the fact that no one was unkind, or rude, or said anything other than, "Glad you're here!", or some variation thereof. A lifetime of feeling like a freak will do that to you, though, and one good night isn't going to change the landscape all that much.

     I mean, I can speak for both of us when I say that I'm grateful for the invitation, and the chance to meet others like us, because there were plenty of partners-of in attendance, too. I can't think of any "bad" that came of it, and in fact, I'm still hopeful that there's even more good to be found. I have a lot (shocking, I know) that I'm still processing, still trying to find the right words for, because there were a couple of uncomfortable things, too, things that I need to get out and about. Again, nothing bad, just, "Hmm, I don't know about all that."

     It'll come to me, eventually.

Tuesday, February 16, 2016

Money Honey

     It's very, very hard, even with the distance of a week, for our emergency room trip last Thursday to not feel like a defeat. We've made it eighteen months, give or take, without having to resort to such measures, and that was a pretty significant thing. And then, at the worst possible time, my husband wasn't able to walk without holding on to something for support, and he hadn't slept in over 48 hours because of the stabbing pain in his spine and pelvis.

     I took him to the Barnes ER, which was the first time we've been there since arriving back in Missouri. They've redesigned it, which was nice, and they got him back fairly quickly, which was also nice. Granted, he usually gets called back in a hurry anyway, relatively speaking, when they learn his medical history, but it's not a given. The various doctors he saw all knew what Marfan Syndrome was, which was huge, because it meant he didn't have to try and explain not just what it is, but why it's causing the current problem. The orthopedic resident was able to get in touch with my husband's regular spinal specialist's office and consult with them about his treatment, which was absolutely great. So, for those things, I'm grateful.

     I couldn't stop thinking, though, about what this one visit meant for our future. A huge part of our current stress level is that I have no idea whether or not he's actually insured. His former employer fucked up and transferred both his information and mine, because he used to carry me on his insurance, to their new carrier, even though he didn't work there anymore. How they did that, I don't know, because he never enrolled, but that's beside the point. The fact remains, he was enrolled, but hasn't been paying his share of the premiums, because again, he doesn't work there. This clerical error was discovered when my husband tried to sign up for COBRA and couldn't, because he was listed as employed. No amount of phone calls and emails to both his former employer and the insurance carrier have thus far been able to get this resolved.

     Why does it matter so much, you ask? They have to treat him at the emergency room if he shows up, right? Well, yeah, but where do you think that bill's gonna go? And really, I should say that it's "bills", plural, because there are going to be at least three, maybe four, because they did labs on him. A lot of people don't realize that there are usually three bills whenever you go to the ER, depending on if you have x-rays done or not - the actual facility bill, which is what you get charged for being in the building and using their stuff. Then you have a separate physician bill, because many ER's use a physician service and bill for their time separately. Then, if you have x-rays done, you're going to get a separate bill from the service that read and interpreted the x-rays. Oh, and also possibly a bill from the laboratory than did your bloodwork, if they sent it out for tests. So there's that.

     I know from both personal and professional experience that this was easily a $5,000 trip, probably closer to $10k, because not only did they do multiple x-rays on him, but then they needed a CT; if he wasn't full of metal (spinal fusion with multiple titanium rods and titanium aortic valve), I'm sure they would have shoved him through an MRI as well. That would've been another $2,000-$4,000.00, but that's a bridge we don't have to cross, so at least there's that.

     You know what's the leading reason people find themselves filing bankruptcy, at least according to the info I can find? Medical bills. Lots and lots of medical bills. When we first moved to North Carolina, my husband was covered under the health insurance offered by his employer, but we still ended up with thousands of dollars in medical bills after he was hospitalized for a month. We were not out-of-network, and no procedures were denied coverage, but the best his company at the time offered was a high-deductible plan that then only covered 90% once that deductible was satisfied. What did that mean for us? It meant we had to pay $5,000 right out of the gate before the coverage would even kick in, and even then, we were responsible for 10% of the total bill. The month of July in 2013, it cost over $45,000 to keep him alive because he was so sick with...something.

     Yeah, that was kind of the final "get bent" cherry on the sundae - after all the hospitalizations, visits to specialists, and diagnostics, no one was able to tell us what was going on. And at the end of the day, we were left with almost $10,000 in bills. We've been paying on them ever since, and have gotten the balance down to around $1700, which I'm pretty damn proud of, but now? Now, we're both terrified to open the mailbox, because there are probably some pretty hefty bills on their way. I can't even begin to guess what they're going to look like, because of his current health insurance tangle. Will they accept the charges and send us the balance? Will they realize during processing that he's not actually covered, and deny the whole visit? Will I actually go insane from trying to figure a way out of this mess? Tune in next time, kids, for the answers to these and other questions you never asked!


Wednesday, February 10, 2016

Hey, Hey, What Can I Do

     Sometimes when I sit down to post something, what comes out doesn't necessarily make as much sense as it does in my head. I think that's what happened with my last post, because I got off track somehow. I fully intended to talk about Marfan Awareness Month, because it's a big damn deal to my husband and I, for obvious reasons, and somehow ended up...not there.  It is Marfan Awareness Month, though, and since my husband and I started our life together, I've come to realize that "awareness" can't just be a passive thing.

     Honestly, the whole idea of being aware of various diseases and disorders used to confuse me on a good day, and annoy me on a bad one. Why would I have such a pissy attitude towards it, you ask? A big part of it is my personal experience growing up with a father who's a cancer survivor, and two aunts and an uncle who were not so fortunate. I just lost my aunt and godmother, Connie, a few months ago, and it still hurts. It will never not hurt, I think, because we lost my dad's brother, my Uncle Lee, fifteen years ago, and there are still days when I can't look at a picture of him without feeling the loss. I don't like having that murderer (cancer, not my uncle) shoved in my face every time I turn around and see another ribbon on another tee shirt. That's a terribly selfish reason, but it doesn't change what is.

     For the longest time, I took the same approach to Marfan Syndrome, because it's caused no end of heartache in my household, and I can assure you, it's nowhere near done with us. It wasn't too bad in the beginning of our relationship, because he was relatively okay then. A few pills every morning, regular visits to the doctor to keep his INR in check, and we were good to go. Out of sight, out of mind, you know? The past couple of years, though, his health has just gone down and down, and there is no part of our day in which it doesn't make its presence known. Subconsciously, I probably figured, "I'm aware, okay? I am very, very aware, so let's move on to something else," and I can't allow that to continue. Not for the sake of my husband, myself, or anyone else living with this disorder.

     The giant flaw in my internal argument, I eventually found, was that if no one knows what the hell Marfan Syndrome is, no one is going to realize it's a problem. And yes, I know there are those who don't view it as a "problem" and may take umbrage with my word choice, but from my personal perspective, it is very much a problem. I'm a strong believer in education of all kinds, for all people, because ignorance leads us to nowhere but a dead end at best, regression at worst. Therefore, if I were to actually start trying to educate people on what this disorder is, how it affects people, it would theoretically push us in the opposite direction, towards progress, yes?

     We need it, guys. Not necessarily so much on the medical end, because I feel like the most dire issues are under control, but on the everything-else end, especially. It's a chronic, degenerative, debilitating disorder, and the havoc it can wreak on your life is no joke. My husband and I are currently trying to figure a way out of the corner we've been backed into, and every possible solution circles back around to some health-related snafu. Figuring our how to live with Marfan's has been an increasingly difficult puzzle to solve, and every time we've found two pieces that fit together, five others show up with no place to put them.

     This is a conversation that needs to be had, and regularly. We have got to become more aware of our surroundings, of the problems we face, of each other, because the only way out is through, as far as I can tell.

Tuesday, February 9, 2016

Learn to Fly

     I know, my last post was less than pleasant. Things have calmed down a bit since then, but we're still nowhere near good. It's a mess of an issue that relates to my husband's current job offer, and his future ability to work, but it's still too much of a cluster to begin relaying in a coherent manner. I'll get there, though, don't you worry. Meanwhile - Marfan Awareness Month.

    I'm probably not the best ambassador for Anything Awareness Month, because I tend not to be a social creature in the traditional sense. I mean, social media, yeah -that I can do. I blog, (not as much as I probably should, but I'm still here), I Facebook (can I use that as a verb?), I tweet, and I Instagram. I know there are others out there, but those are the ones I'm comfortable with, and honestly, it's more than enough for me to maintain those few outlets; it's not like I have a giant following or anything. Besides that, I'm just more comfortable behind a keyboard, where I can edit my thoughts before sending them out into the world, because I have a habit of running off at the mouth in person.

     I'm also aware that I'm not everyone's cup of tea, and the things I want/need to talk about as they relate to my husband's disorder are usually thorny things; no one wants to bleed in public, so I've found that this is better. My husband tried once when he first moved to St. Louis to partake in a Marfan-based support group, but found that the majority of the conversation ran to fundraising, fun-day meet ups, that type of thing. That's all well and good, and absolutely an essential part of life with Marfan's, but it's not everything. What he found was a lack of willingness to dig deep into the issues that he was so desperate to commiserate with someone about, issues that people were reluctant to bring into the light. This was disheartening, to say the least, and he never tried again.

     I think, though, that now is the time for him to give it another shot. I've always been aware of The Marfan Foundation, but I never really had much to do with them, until last fall. I decided then that moving back to St. Louis meant that it was the perfect time to reach out to others living with this disorder in some capacity or another. We have some of the best Marfan specialists in the country here in St. Louis, so it's not surprising that there's a fairly active Marfan community here, one which I've been nervous to become a part of up to this point. At this point, I've barely begun to test the support-group waters, but so far, so good.

     Full disclosure - I've never joined any sort of support group, or social group centered around his Marfan's, in part because I knew of my husband's previous experience, and I convinced myself that I wouldn't find what I was looking for, either. That's not to say that I didn't think like-minded people existed - I knew, and know, they do. I receive emails and chat messages from people all over the world, desperate to talk to someone about the ugly parts of what our lives are like. It hurts, physically, to read some of the emails, because I know their hurt, their frustration, their feelings of hopelessness - it's an almost tangible thing for me.

     I'm thinking though, as my husband and I sit here in an increasingly darker hour, that maybe I should look to someone else to help me turn on the goddamn light. Someone, oh, I don't know, WHO KNOWS WHAT THE HELL I'M GOING ON AND ON ABOUT?

      Right now, I'm still pretty passive in this new endeavor, waiting for people to start the conversation for me. I think, though, that this may be the right thing to do, to start making myself a more vocal presence in the Marfan community, and, by extension, my husband. He struggles every day with his disorder, in a hundred ways I will never understand, because when you get right down to it, I'm still the unaffected spouse. The flip side of that coin is that my position is one he can never fully understand, and I think we could both benefit from broadening our horizons, instead of picking at each other until one or both of us loses our minds.

     These feelings are still very much in their infancy, so when I do finally decide to venture out of my corner of the internet, I don't know how it's going to go. We're supposed to be attending the Heartworks St. Louis fundraiser next month, and I have to admit - we're both nervous. I'm more nervous-excited, mostly at the prospect of meeting people to whom I won't have to explain what Marfan Syndrome is. My husband is more nervous-nervous; he's never really come to terms with his disorder, despite the fact that it came over two decades ago, and he still gets twitchy and uncomfortable whenever someone recognizes that he's got Marfan's. So, we'll see what happens.

     My gut feeling, though, is that it's time to stop locking ourselves away and relying solely on one another for support; I think it's time to see if there's another way to go about this.

Thursday, January 28, 2016

Space Oddity

     Today was a bad day, kids. I mean, heart-crushing in its heaviness and implications for the kind of future my husband and I now have to look forward to, and I don't quite know how to process it all yet. I think I watched a couple of dreams we've held for a long time disappear into the black, and that bitter pill is made worse by the fact that they weren't extravagant dreams to begin with. They were actually pitifully mundane, but they were ours. I haven't sorted it all out in my head yet, (it's a war in there at the moment) but maybe once I do, it won't be as bad as I think. Hope springs eternal, right? Probably, but then so does blind stupidity and stubbornness; that's a post for another day, though.

     Last night, before today came crashing down around us, we were watching the X-Files reboot. I never really watched it when it was on the first time, but my husband did, and he was interested in seeing if this was going to live up to the hype or land with a resounding "meh". I parked myself on the couch to hang out and read my book, as I'm currently enthralled with "Ready Player One,"content to just be in one of my favorite spots, with one of my favorite people. I wasn't really paying attention to the show, since I have a tendency to block everything else out when I'm reading. (Seriously. I once didn't hear a fire alarm going off during my lunch break at work until my co-worker slammed her hand down on my desk and said, "HEY! Fire alarm, time to go!") Then, out of nowhere, I heard, "Marfan Syndrome." Um, what?

     I've written before about seeing actors in various tv shows and movies who catch my eye as possibly having Marfan, and how I would never have noticed if not for my husband, because now I know the common presentations. I've never actually heard the name said in media, though, unless it's an article about Vincent Schiavelli or Jonathan Larson; also maybe an episode of House? It startled me enough to pull me out of the book, and I turned to my husband and asked, "What did he say?" He was as surprised as I was, and had to back up the show (we were watching it on Hulu) to watch it again. Confirmed - dude really did just say "Marfan" in the context of the plot.

     Not to spoil anything, but Mulder and Scully were in some sort of hospital where children who were born with various genetic abnormalities were being kept in isolated observation rooms. The implication was that the were being subjected to medical tests, with the ultimate objective being to "fix" the flaw in the genetic code. I have no idea why the writers chose Marfan's out of the Book O' Disorders, but they did, and I discovered I'm more unsettled by it than my husband.

     My husband's disorder is genetic, and it doesn't present the same way 100% of the time in 100% of people. Some people don't even realize they have it until years down the line, and I'm sure there's a small contingent that may go their whole lives without a diagnosis. My husband's not one of them, though, and in fact looks like what I've seem termed as "classic" symptoms. (How accurate that phrasing is, I don't know.) He's unusually tall and thin, his fingers are thin and spidery, and if you know what you're looking for, it's clear what's going on. In the years since his valve replacement surgery, his dimensions have changed somewhat and he looks more balanced now, weight-wise, but the deterioration of his spine and joints have left him with an odd posture. More than once, he's told me how he's been made to feel like those kids behind the glass.

     In his teen years, he was a bully magnet due to his appearance, (though if we're being honest, his smart-ass mouth did NOT help the situation) and the bulk of his twenties was spent feeling less than spectacular. He often felt like an outsider, because kids can be cruel. It got better with time, but that sense of being looked at like a completely different creature instead of just a kid has never left him. It's why he still gets uncomfortable if he notices someone looking in his direction too often, and why he's reluctant to participate in social activities centered around others with his same disorder - he is not okay, 24 years later, with his Marfan diagnosis, and neither of us is sure whether or not he ever will be.

     It was coincidental that we were watching this particular episode of this particular show, because my husband has just mentioned to me that he sometimes felt more like a collection of symptoms, rather than a human being. I don't know if that's a common emotion, or if my husband feels it more deeply because he unfortunately falls on the more severe end of the Marfan spectrum. Of the 38 symptoms Wiki lists for this disorder, my husband is in possession of 29. Needless to say, it takes a village of specialists to keep him up and moving. And even then, there are days when it's just not enough.

     I suppose, after all that, he's more okay with everything now than he's ever been, which is good thing. He even appreciated the context in which the show used the character with Marfan (I think; it wasn't totally clear whether the child shown was supposed to be the one with the disorder, or they just happened to show that child while talking about Marfan Syndrome), and said that he thought it was right. I'm a little more on the fence, because my husband's not a science project, you know?


Sunday, January 24, 2016

The Lighthouse's Tale

     The past couple of months haven't been the most fun for my husband and I, not gonna lie. He moved back to Missouri after receiving a job offer (in writing, I might add), but continued bureaucratic red tape has resulted in his start date being pushed back repeatedly. He's got yet another start date scheduled for next week, but considering we've been running our household on just my paycheck for the past two months...yeah, my stress levels are at record highs. This is a lousy situation for anyone to find themselves in, and ours is compounded by the fact that my husband's disorder means that in addition to being without his income for the past eight weeks, we've actually acquired additional bills in the form of COBRA health insurance coverage. Or we would have, had that not turned into a nightmare all its own. That, though, is a story for another day, because tonight? Tonight is for something good.

     Last week, I received an email from a woman who works with The Marfan Foundation, and she said she would like a chance to speak with me on the phone, as she's been following this blog and wanted to discuss. I knew that my blog had been linked on their website for some time, but I had no idea who, if anyone, from the organization actually read/followed it. I was curious to see what exactly she wanted to discuss, and slightly nervous that perhaps I was in trouble for one of my posts that they'd seen. (Let's be honest here, I tend not to pull punches when talking about something that's so very important to me, and I know some of my opinions aren't of the majority.) Shockingly enough, my neurotic tendencies were unwarranted, as per usual.

     Without going into detail, the conversation centered on what I've been writing about since essentially day one - the day-to-day of what it's like living with Marfan Syndrome. I phrase it that way because even though I'm not the affected one, my husband is, I live with this disorder, too; it's not just him. As he's told me on more than one occasion, I'm affected by it on essentially every level that he is, with the very important exception of the physical level. It's absolutely the third person in our marriage, the thing that makes itself known in every conversation about our present and our future, the demon that sits down at the table when no one's invited it in. The good and the bad and the mundane and the ugly and the beautiful; all of it, especially the parts that so many seem to be so reluctant to talk about.

      So I'm going to keep talking about it, because apparently, there's help on the horizon. Knowing that they're going to be focusing more on quality of life issues is like seeing the lighthouse's beam cutting through the dark after far too long at sea. That's where my husband and I have been for the past few years as his health has gone steadily downhill - lost in the black, tossed around in the storms, and pounded by wave after wave of sickness, medical bills, impossible diagnoses, and God only knows what else. We've managed to keep from drowning thanks in no small part to our network of family and friends, plus the huge well of stubbornness that my husband and I regularly draw from. There have been more times than I can count that I have no real explanation for we couldn't just say, "Screw it," and let the downward spiral carry us on its trajectory.

     We didn't, though, not one time. We have ridden out every storm thus far, and finally, finally, there's hope that we may not have to keep fighting alone. There's hope that an organization much bigger and better-connected than we could ever hope to be wants to know, wants to learn, wants to do everything they can to tackle these issues. I'm going to make it a point to start writing more regularly, to bring our issues to light where others can see them. I'm writing a piece for The Marfan Foundation's website, hopefully to be published next month, as February is Marfan Awareness month, and my husband and I were invited to attend Heartworks St. Louis here in St. Louis. Needless to say, SO MANY opportunities on the horizon to talk about living with the Marfan-shaped elephant in our marriage.

      Here's hoping I don't fall on my face.