"Mr. Miller is accompanied by his wife of ten years, who is an excellent historian..."So went the transcription yesterday by our neurologist/psychiatrist here at the Mayo Clinic, and it feels pretty accurate. If I've had any role in the things that have been going on with my husband the last couple of years (or really, our entire marriage, but who's counting), it's been best summed up as "advocate," or now, "historian." I have not publicly told the whole story of what's happened to Alex, because I hadn't felt it was my story to tell, at least not in full, and in the beginning Alex was reluctant for people to know because he didn't want to deal with the stigma attached. But he's at the point now where he realizes that the more a story like this is shared, the more likely it is to resonate with someone else who has a similar experience, and that there is a possibility for people to help each other in this way. I also think it's liberating to finally just put it all out there and heave a big sigh of relief.
In the fall of 2008--yes, it's been going on that long--Alex, who most of you know has bipolar affective disorder (Bipolar 1, for you pros--the heavy hitter), had been mired in a deep depressive phase that just would not break. This was unusual for him, especially for the season in which it had occurred, because historically we've battled hypomania every summer like clockwork, ramping up benzos and antipsychotics to get us through until winter with as little trauma as possible. But something was different for those months of 2008, and by September, he was truly desperate.
On about our third visit in a matter of days to his psychiatrist, Alex was given two options: Add an anti-depressant, for the first time since his bipolar diagnosis, to his med cocktail, or undergo Electroconvulsive Therapy (ECT). Those last words hit our ears hard, conjuring up images of Jack Nicholson in "One Flew Over the Cuckoo's Nest," and for a stunned moment we just looked at each other. But the prospect of an anti-depressant, at that point, was equally terrifying. Every time in his life that Alex had been administered ADs, it had resulted in full-blown, florid mania. He'd been misdiagnosed with unipolar depression a number of times, so he had some pretty good experience with this. Let's just say he's lucky to be alive, and extremely lucky to still be married. So for him, at that point, that option was just right out. And then the doctor began talking up the ECT, saying all the things that I've now heard from just about every doctor. It's safe, it's mild, it's just a seizure, people have seizures naturally all the time, and they're OK, it can snap a person out of a depression abruptly, it will break the depressive cycle and allow you to recover, just a few days and you'll feel better...I said no, Alex said yes. He was desperate, and it was his decision.
We were told to expect some mild confusion on the days of the treatments, which would improve quickly. He was scheduled for 6 treatments, spread over the course of a couple of weeks, and should be recovered enough to go back to work and resume life as normal within a couple of days after the final treatment. We went four times; he had three treatments. That fourth day, based on my repeated concerns about the profound effect the treatments were having on him, he was examined and further treatments were canceled. This was the doctor's call, and I have since found it baffling that the doctor (and all doctors, really) could maintain that there is no possible way that ECT treatments are to blame for my husband's condition, while at the same time ceasing the treatments due to what they were doing to him. As it turns out, psychiatrists can tolerate an enormous amount of cognitive dissonance without suffering the ruffling of a single feather (or fussy little beard-hair).
I wrote describing the symptoms once, painfully, already, so I won't rehash that here, except to say that things have not improved much, if at all. Alex is now officially--by which I mean according to the Social Security Administration--completely disabled. Each day is still a struggle. It's been an enormous strain on our marriage, partly because there is so much I just can't do alone, and partly because I am by necessity his caretaker 24/7. His condition leads to fear and insecurity and a constant need for reassurance, usually meaning my immediate presence wherever he is. And by immediate, I mean not more than a few feet away, and certainly not in another room. Preferably touching distance. I love him, but it's exhausting. It's putting me into a sort of parenting role, while he still views me purely as "wife," and this leads to a good bit of emotional conflict between us. I get frustrated. I get angry. I get sad. I get depressed. I cry. A lot. Everyone wants to help, but no one can. Not really.
But back to the process at hand. It has taken us this long to get this far, largely due to being buffaloed by the medical establishment at almost every turn. Our sweet, wonderful GP is the exception--he'd have done anything to help Alex, and even referred him for some cognitive and speech therapy (which was denied due to lack of a definitive diagnosis), but this was just beyond his scope. The psychiatrist and neurologist that we saw at home pretty much circled the wagons for the "there is absolutely no reason to believe that any of this is caused by ECT" line. Really. No way. It's got to be something else. Depression. Conversion disorder. Something totally unrelated. Except that it happened literally overnight, WHEN HE RECEIVED ECT TREATMENTS.
Look, I'm not saying, and never have, than anyone did anything wrong, or that there's any level of malpractice or anything like that happening here. We're not even anti-ECT in general; it helps thousands of people every year, people who go on to have no complications. I've not threatened, nor do I have any intent, to sue anyone. I don't see how we could, anyway, since Alex signed away all his rights relating to possible risks prior to treatment. I did report it as an "adverse event" to the FDA's Medwatch, because I think that having adverse outcomes on record is important for people like us who may come after. We just feel that, possibly, there was some latent weakness or issue particular to Alex's brain, nervous system, or some renegade organ, perhaps, that was exploited by the trauma of ECT. And yes, I believe that passing electrical current through someone's brain sufficient to cause a seizure counts as trauma.
Every PT/OT/speech therapist we've seen has said the same thing: That Alex presents as a victim of a traumatic brain injury. That if we'd told them he'd had a bad head injury, they'd absolutely have believed it. We even began some cognitive and speech therapy at one point, only to have it discontinued because no doctor would give a diagnosis of TBI, because, of course, an injury pursuant to ECT is impossible. We began to seek help outside of our "home" medical circle, starting with a neuropsychologist in Little Rock who was the first sympathetic ear we'd had, and told us that yes, he had seen adverse outcomes from ECT. Not a lot, but some. In our psychiatrist's report on one occasion, he notes that I told him that we'd seen a neuropsych "who claims to see these symptoms in most ECT patients," which I most certainly did NOT say, and that I "couldn't tell him the name of this doctor." Not entirely true, because the truth was that I WOULDN'T tell him the name of the doctor, because we were trying to get in at Mayo, and I couldn't risk him picking up the phone and leaning on this guy before we had all the records in our hands. Yes, I was that paranoid at this point. But you know what they say about paranoia, if people are really out to get you.
At first, we couldn't get a referral to Mayo. Our neurologist just refused. She said she'd done every test she could (and to be fair, they're repeating all the same ones here, so I don't doubt her on that count), there were no conclusive results, and that was that. It was the response we were getting pretty much everywhere we turned, and I'll give you the translation of how that came across to us: "Yes, something is very, very wrong here. Very wrong. And it's a shame. Gosh, it's too bad. But I have no idea what it is, and I have my own life to live, and at the end of the day your problems aren't my problem, so take this sympathetic-looking shoulder shrug and please go away now."
So we tried on our own. We contacted the neurology department at the Mayo Clinic directly, provided some records and a history, and waited. And got back a letter informing us that they were "declining to consult" at this time. Dead end, unless we were referred by another neurologist. This is when I had a form of mild psychotic break and basically just harassed the local neurologist's office for several months until they secured a referral for us.
So here we are. I'm trying to be hopeful, but as I'm seeing them do the same things here that they did at home, it's difficult. And Alex is so completely desperate for help, and so entirely invested in this consultation, for which he's waited more than a year, I'm terrified of what will become of him if we receive yet another sympathetic shrug of the shoulders, and a "Sorry, old sport, tough break, that...well, good luck in the future, goodbye!"
Don't do that to us, Mayo Clinic. We need you to pull out a win here.