Tuesday, December 2, 2014

Dark Side of the Moon

     I have thought about this post since almost the beginning. I have turned it over in my head, cracked the door to the room where it lay, walked away time after time after time. It's been the biggest elephant in the room in a parade of pachyderms, the one topic that was too finely edged to be able to share with the world. I talked to my husband about it last night, as I have on many previous occasions, and even though he reassured me that this is something he wants, that it's even necessary, I still hesitated. I still felt the need to text him earlier and ask again if he was really sure this was okay, and he said to me, "I stand by what I said - no one talks about it, it doesn't get fixed.You can open all the doors you want. Hiding it doesn't do anyone any good." Verbatim. That was pulled directly from my phone. So let me be very, very clear right now, crystal, even - my husband is the one who made the hard choice to tell this piece of our story; I'm just the messenger.

     For him, I would keep this buried, no matter how many thoughts on the subject I have, or who I think it might help. He's reached a place, though, where he feels the need, the desire, to talk about it, and let it be talked about. I think that stems from an acceptance that was won of a long, hellish battle, and a need to have it accepted by others.  This is a turning point, a huge, huge step for him, and a measure of freedom, because it's hard work keeping the demons locked in the basement; those bastards have a tendency to break through with alarming regularity. The fact that my husband is able to keep going, day after day, in spite of the war that's raging, marks him as one of the toughest people I've ever met, and certainly one of the best, because I know that the biggest reason he does it is because of me. The words don't exist to explain how much I love him for that alone.

     That said, may as well jump headfirst down the rabbit hole.

     My husband has major depressive disorder, and has had it for years. It wasn't diagnosed until relatively recently, but it's been there for decades, lurking. It's been the ugliest of monkeys on his back, that one of the many facets of his physical disorder is a mental disorder, mostly because of the astonishingly deep stigma that surrounds mental health in general. It's also a kick in the teeth because he always felt that his brain was the one thing he had going for him, the one thing that he could keep in shape, the way another might work to shape their abs or their arms. When it finally hit home that there was something wrong there, too, it was a much, much harder blow than any that had landed before. He told me once that he had a moment of, "What, my body has failed me, now my mind has, too? Rude."

     In my husband's case, his depression was borne of his physical issues that are the result of his Marfan's Syndrome. He wasn't officially diagnosed with the Marfan's until he was eighteen or nineteen, and even then, even after he had three titanium rods bolted to his crumbling spine at age twenty-two, even after his weakening aortic valve was replaced with yet more titanium in the form of a St. Jude's valve, he was still mostly okay. There were hints of what was to come, moments when he would think to himself that he would never have a family, that he possibly wouldn't live past thirty (before my husband's heart surgery was a widely-used treatment for the aortic enlargement that's a dangerous trait of Marfan's, the average age of survival was around thirty-two or thirty-three, says the all-knowing Google), and those are the kinds of thoughts you don't just shake off.

     It was still very manageable, imperceptible to almost everyone, until a few years ago, when his health really started going downhill at a frightening rate. We didn't know what to do, the doctors had no firm answers, and things were just all-around bad. We were newly-married, and I think he really started questioning his decision to ask me to marry him. I mean, try to see it through his eyes. I'm eleven years younger than him anyway, so that's already a bit of a head trip. Then he had to watch, night after night after early morning after weekend, as I racked up countless bedside hours with him. He saw me go to work sleep-deprived, he saw me working on my college coursework in his exam room in the ER, he saw me writing pages and pages in my journal, knowing that I was trying to let it bleed onto the page instead of onto him and our marriage. He watched it all, and felt helpless. More than that, he felt responsible. How could anyone live with that and come away unscarred?

     It's a cruel reality of chronic illness, one that I rarely see addressed, that the physical hardships often lead to mental ones. I've been by his side for the past half-decade, to dozens of specialists, pain management doctors, primary care physicians, emergency rooms, urgent cares, and damn-near anything else you can think of. I saw it pushing him further and further into a no-man's-land of deep depression, until finally he reached his breaking point. After that, he did seek treatment for the psychological aspects of his disorder, though I'm not sure how successful any of it has been. Hell, at one point it even resulted in yet another overnight in the hospital due to a bad reaction of the anti-depressants and his regular meds.

     I have to pause for a moment and make something clear - when I say my husband's depression is another facet of his underlying disorder, Mafan's, I am speaking ONLY about my husband. For millions of people, major depressive disorder is a stand-alone diagnosis, one that warrants serious and immediate treatment, just like any physical ailment would. Please don't take what I'm saying to mean that all people who have Marfan's have depression, nor that every person who has both Marfan's and depression should associate one with the other. It is entirely possible for someone to be diagnosed with both, and one have nothing whatsoever to do with the other. I can only speak for my husband and myself, and his specific medical situation; I would hate for someone to read this and walk away thinking, "Oh, that one girl who blogs about her husband says that his depression is related to his Marfan's Syndrome, so mine must be, too." No. Stop. Bad. Take as much or as little from this blog as you want, as long as it's not that I'm trying to diagnose or direct treatment over here. Okay?

     I suppose the main reason I wanted to talk about this was because of my and my husband's ever-increasing frustration with the state of mental health care. I mean, Jesus. It's taken almost four years to even be able to admit that my husband has a mental disorder, because it's such a dirty word - mental disorder. People are so forgiving of the physical, sympathetic like you would not believe, but the mental? No. That's not a thing we talk about, not even those closest to him. My mother, for example. God love her, the woman has zero boundaries when it comes to talking about my husband's health. She has no qualms about asking things like, "Has he had a BM today? I know he was on an IV drip of dilaudid, so he needs to watch that." MAMA! Could you not?! The depression, though, that's another story altogether.

     She knows it's there, most people who are close to us know it's there. It's not just something that's only discussed in hushed, hurried conversations, though, it's flat-out not discussed. I'm pretty sure the impetus behind that is a steadfast love for my husband, and that's what makes it bearable. Nobody in his life wants to make things worse than they are, nobody wants to feel more helpless than they already do, and mental health is one of those things that very, very few know how to handle with grace. I'm including trained professionals in that assessment, because my husband has been to no less than five different psychologists since his diagnosis, and not one of them knew what to say to him.

     I mean, I can't really hold it against them too much - I live with him, know him better than anyone, and still, there are moments when I can do nothing but hold his hand and let him know that whatever else, at least we're together, and that's not nothing. The problem, though, is that the less opportunities he has to talk about it, the more he turns inward, and the more isolated he feels. That feeling of isolation feeds the depression, and deeper into the shade he retreats. There's no good answer for it, not that I've come across, and therein lies one of my biggest frustrations.

     There is so, so, so much more to say about this, and I'm going to get there, because we're now officially past the point of no return. One of the reasons my husband gave me the go-ahead to share this was because he's finally getting to a point of taking it for what it is - just another part of the whole, like his back pain or his blood thinners. My hope is that by talking about it like I talk about every other part of his disorder, it will lessen the impact it has on his/our life. I know we can't kill the monkey, but I'm thinking we can sure as hell loosen its grip.

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