02 July, 2015

Please read this.

Note to my readers: this post is several WEEKS in the writing. More effort has gone into this than any other post I have written in ten plus years, by far. You can trust that every word herein has been thoroughly vetted and put in place with the fullest of intentions; that every feeling expressed here has has been fully examined and found authentic; and that every statement is as true as it can be under the circumstances.  
If you know me, if you care about me--if you know Eva, even if only as an abstraction, and care about her on any level--I implore you to read this post. 

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There is so much we don't understand about the human mind and the mechanisms and maladies behind its malfunction. And it seems to be human nature to fear what we do not understand. That fear--which might helpfully be abbreviated "False Evidence Appearing Real"--is not helpful, particularly when it ends up being directed at a suffering human being. Trust me, he is dealing with more than enough fear of his own. Coping with the effects of yours on top of his own may be impossible.

Many people have lamented that mental illness is contextualized completely differently from physical ailments.
The fresh hell of it is, the comic above only scratches the surface of the stigma against mental illness, and how that stigma manifests, even from medical professionals who should know better.

Let's consider my beloved wife, Eva, who is mentally ill.

Not many people suspect that, I'd wager. Fewer still know it for a certainty. That's because learning someone is mentally ill in any way often changes formerly friendly attitudes into distant and even hostile ones. You learn to be exceptionally careful in whom you confide a truth like that. You're putting your life in their hands.

When it comes to Eva, until very, very recently, nobody could have imagined she's been living with mental illness for much of her adult life. She has always been the epitome of competence, even when her confidence sagged. In its proper state, her mind is quite simply the most functional and elegant  I have ever encountered: supremely analytical, highly compassionate and respectful of other points of view, able to entertain multiple conflicting accounts and synthesize them into a coherent consensus. It's a mind I am in awe of, no less because it requires medication to function properly.

I am not the only one to feel this way. Eva has repeatedly climbed ladders, earned multiple professional designations, proven herself in every position she has been in over her life...all the while creating deep, lasting friendships and -- always and forever -- learning new things each and every day. There may be people who dislike my wife -- I can't imagine why -- but I believe everybody who knows her respects her.

Now here I am, her loving husband of fifteen years, coming forward with a revelation that could cost her a great deal of that respect.  Why?

Because circumstances have revealed her illness all by themselves. Because that revelation is causing, for the first time in her afflicted life, serious disrespect and disruption. Because the injustice behind that is heaping pain on what is already a very painful existence for her and -- at a remove, to be sure -- for me. Because the situation she finds herself in, through absolutely no fault of her own, needs recognition. Because there are thousands...no, millions...of people walking around with similar problems in their presents or futures: people you know, people you respect, people you love dearly...and they, too, deserve to keep every last bit of that admiration, respect, and love. Indeed, people with mental illnesses deserve more of all three, in my considered opinion. If I don't come forward and explain some of the whys and wherefores behind what has appeared to be a precipitous and unexplainable decline in my wife's functional abilities, people will draw conclusions of their own. Wrong conclusions, hurtful conclusions, conclusions even more wrong and hurtful than the truth.

THE TRUTH

Eva has been medicated for mental illness longer than I have known her. The nature of medications and mental illness both has necessitated occasional changes in dose and kind of medication, but medications themselves have been a constant.

She had bariatric surgery in November 2013, and for quite some time, for reasons nobody understands, she appeared to dodge many of the horrid side effects that plague bariatric patients. The weight melted off--very close to 200 pounds at this point--and until a few short months ago she was doing well. Better than well.

I talked about the decline in this post and my standard line has been that Eva's had trouble absorbing her medications, bariatric and otherwise, and "the otherwise is causing problems".

I didn't really understand what I was writing then. I still don't fully understand it now. But here's what I do understand: because of the malabsorption which is a permanent aftereffect of the surgery, she must take a considerably higher dose of her medications for them to have the same effect they used to. And her body does not know what to do with the excess.
The solution seems simple, doesn't it? Just go off the offending medication. Ah, if only life were that easy. There are two problems with that scenario. The first is that the medication in question--which again has been extremely effective in treating her disorder--is very powerful and would require lengthy hospitalization to discontinue. Which she would gladly undergo, except...that effective medication would simply have to be replaced by another, almost certainly less effective medication, which would be required in the same or even a higher dose, causing the same or even worse side effects. The other alternative is wean herself off the medication and live more intimately with her disorder...which needless to say has severe consequences of its own.

This is, needless to say, frustrating as hell. The drug she is on is now...NOW...contraindicated for the operation: if you are taking it, you can't have bariatric surgery because of precisely this outcome. They knew it was a concern, as evidenced by the verbal *and* written communication with our GP to ascertain that yes, Eva was on this drug and yes, she was stable.

Was.

This is where I lose my mind just a little bit. WHAT THE %^&* DOES EVA'S STABILITY *BEFORE* THE OPERATION HAVE TO DO WITH ANY &*(ING THING AT ALL?! Given that, you know, *after* the operation they're going to HAVE to destabilize her by making her take three times as much medication?!

I'm not a litigious person, but there are times I just scream lawsuit. Eva's more sanguine--about this aspect, at least. Trial and error, she says, and sucks to be her, she was part of the error.

What has her up in arms is the "aftercare" supposedly provided by the bariatric clinic. We were happy this existed, on paper, before the operation: appointments liberally scattered through five years. It turns out that their chief--perhaps only--concern post-surgery is about the patient's weight. Anything else, including what Eva is now afflicted with, seems to be considered "not a direct result" of the surgery and thus not important. They're making an exception and allowing Eva to see a psychiatrist who is only supposed to be available to pre-op patients. They're letting Eva see this psychiatrist for ONE HOUR.

Oh, yeah, that'll help.

Meanwhile, Eva has severe osteoarthritis in both knees. This, like her mental illness, has been diagnosed. But now, suddenly, while the arthritis is still there, the pain in her knees is "actually" all in her head, according to a doctor I formerly respected who diagnosed her knees and who has been treating her mental illness for nearly our entire married life. It's all a result of depression, you see.

Depression is not what is afflicting Eva at the moment: I'd stake my watch and warrant on it. She is of course discouraged by and despairing of this turn of events, and upset that they are keeping her from her productive life. But actual, clinical depression, such as I have observed in others--one loved one who attempted suicide right in front of me springs vividly to mind--that's not what is affecting Eva, and certainly not Eva's knee. That a medical doctor, who diagnosed the arthritis, should spend a great deal of time talking to my wife as if she were a child, telling her "there's no logical reason" why she should possibly be feeling pain in her knee, ergo it's all in her head--" you know, I lack medical credentials. But my bullshit meter is quite finely tuned, and its klaxons are sounding.

To be clear: we are not denying Eva is mentally ill. How could we? She has been medicated for mental illness for years, and it took her bariatric surgery throwing those medications hopelessly out of alignment for her illness to really become noticeable to most people.  What we are objecting -- strenuously -- to is the implication that, now that her illness is out in the open, it accounts for anything and everything ELSE that''s wrong with her.

And then there are the difficulties beyond dealing with mental illness and physical ailments, that 'the system' insists on heaping on those already suffering. There is the little matter of money: Eva's short-term disability will run out in a month and there is a yawning chasm of a waiting period until long-term disability kicks in. Two months of just my income.

Thank goodness I got a job when I did, or you wouldn't be reading this right now.

I'm not sure what the purpose of this waiting period is supposed to be. It appears to exist merely to ensure you are financially disabled, too. And while I get that people are supposed to have several months of salary put aside to deal with contingencies like this, reality for us--and for many others, I am quite sure--is that contingency funds either never existed or, as in our case, have been used up by other complications and crises.
We considered renting out a room in our house. We could do that, but there's no point: any money we make doing so will be clawed back dollar for dollar. Gotta keep the disabled poor.

In case anyone feels the way several doctors do about Eva and suicidal impulses--let me reiterate that she is not clinically depressed--she is NOT suicidal. At all. She also is not getting worse any more. She seems to have stabilized...which is good. But consider: when you're taking three and four times the recommended dose of medications, you are in uncharted waters. and who knows what lurks in them.

WHAT NEXT?

All of of this, all of this post to say three words.

WE DON'T KNOW.


Thank you for reading.

2 comments:

Catelli said...

Holy fuck guys!

And yeah,no words. Just a lot of conflicting emotions.

Christine Carter said...

BIG HUGS to both of you (and a swift kick in the pants to your doctor)! As someone who has suffered from depression (post-partum), I can say from experience that there should be no distinction between "mental" and "physical" illness. ALL illness has a physical root cause even if we don't yet know what that cause is (with the possible exception of "situational depression", but SD is temporary and, I would argue, not an illness but simply a natural reaction). In recent years, there has been discovery after discovery showing real physical causes of illnesses that were formerly considered "mental". Unfortunately, treatments are longer in coming. Keep a stiff upper lip in the meantime and find a better doctor, if you can!