It seems silly to me that people still don’t know what Meniere’s is. I guess that is because it has become so central to my life these days. For the last couple of weeks I’ve toyed with writing several articles on various subjects, including some work on short fiction that I’d like to finish someday.
But for the entirety of these last few weeks my hearing has been burdened by painful tinnitus. So loud that I can’t even soothe the sound away with rainymood or any other white noise treatment. I have a hard time forcing coherent thoughts through a barrier of noise that impenetrable, much less the capacity for multiple readings necessary to weed out all the random keystrokes that slip in when you aren’t paying attention.
I wandered over to a fellow sufferer’s blog earlier today (thanks to my reddit habit) and noticed he had put a new entry up on it. For those of you who don’t know what Meniere’s is, I’ll post a short quote;
Symptomatically, most people experience “attacks” of violent rotational vertigo (feeling like the room is spinning), a feeling of fullness and pressure in the affected ear, loud ringing known as tinnitus, and progressive hearing loss. Many sufferers also report nausea, cognitive impairment (brain fog), fatigue, anxiety, and depression.
Meniere’s disease affects .2% of the population, roughly the same rate of incidence as Multiple Sclerosis. Yet virtually no one has ever heard of Meniere’s disease.
Here’s the bit that caught my attention. A study I’d never run across conducted in 2000. The sample size is on the small side, but it still represents a statistically valid group. The attention grabbing quote was this one;
“Meniere’s disease patients are among the most severely impaired non-hospitalized patients studied thus far … Patients describe impairment in travel, ambulation, work and other major social roles as well as trouble learning, remembering and thinking clearly.”
While this is clearly hyperbole from an unknown author (I can’t seem to track down the original article quoted) the dense jargon in the study backs up the statement. Quality of life is reduced below the levels of deathly ill cancer patients. Very few of my vertigo attacks (frequently referred to as drop attacks) didn’t include my begging everyone in earshot to please kill me. The sensations are intolerable, and yet you have to tolerate them. You cannot escape them. Had someone offered me an easy way to end it all while in a vertiginous state, I would have readily taken them up on it.
That is what Meniere’s is like on the bad days. On the good days I just kick myself for being unable to accomplish the simplest tasks because I’m lucky to remember my name from one minute to the next, like the last two weeks have been. There are days I forget. Mercifully, there are whole months that go by and I’m not forced to remember why I’m not working in architecture anymore. Looking forward to having a few of those days sometime in the hopefully not too distant future.
Back to the point. The point of writing this. Meniere’s awareness. At the bottom of the Mind Over Meniere’s post (I hate that blog name. Sorry. I’m sure mine is annoying to many as well) is a link to yet another Change.org petition. One amongst thousands. This one seems silly, but maybe it will have a genuine effect if Bono can be convinced to help raise Meniere’s awareness. Who knows? Couldn’t hurt to have someone say the word Meniere’s in front of a crowded audience. Surely someone will notice.
The song they’re asking him to announce in front of is Vertigo. It goes to show you how far out of music that I am; I don’t think I’ve even heard the song before. There was a day when I knew every artist on the charts. Knew who they were and what they sang. The last thing I remember U2 doing was Joshua Tree. Are they still a thing?
Anyway. Sign the petition if you are so inclined. Maybe it works, maybe it doesn’t. All I know is that I want this damn ear to stop ringing so I can organize a few thoughts.
“Keep a little bit of madness in you. Just a little touch of it. Just enough, so you don’t become stupid. A little madness will keep you alive, because no one in the world knows how to tax that.” – Robin Williams – Reality… What a Concept
I owned that work on cassette. It was one of my first purchases, if not the first comedy album I ever owned. I listened to it so often I memorized it, before the tape fell apart and I had to stop playing it.
I loved Mork & Mindy. Watched his appearances on Carson. Went to see every film he was in, just because he was in it, and for no other reason.
I was outraged at Dead Poets Society, though. (spoilers!) I’ve watched it since, and I know now that I was wrong, that I shouldn’t have been so angry at the suicide portrayed in that film. But at the time I felt it was a betrayal, that it was an acknowledgement of the darkness in the world, that the film let the darkness win, by killing what I saw as the main character, the character I identified with at the time. Worse, I associated Robin with the film, because I had gone to see it specifically because he was in it.
All of us fight our own inner demons. I’ve fought with depression for many years, longer than I can count. Menieres has only made it harder to cope with, but the darkness has been there for as long as I can remember. So long, in fact, that I don’t even remember when I made the pact with myself (unlike others) that I wouldn’t contemplate suicide.
It’s a sad observation of human existence that suicides increase when someone else commits suicide; this is especially true of prominent figures. Watching MSNBC’s coverage, I was struck by this when they flashed the numbers for suicide prevention on the screen. I feel it is a shame that Robin let depression win; and as someone who fights depression, and who knows there are others out there engaged in a daily battle with it, I have to see it as letting depression win. This is not a judgement on Robin, or an observation of failure on his part.
Depression is not cancer; or maybe it is. Cancer of the mental processes, perhaps. In any case, when the physical body fails (and it will, for all of us) then it really is over. But when the mind gets trapped in that inward spiral, no one can break you out of it unless you want them to, unless you want to keep living. That is a choice you make.
I will not leave a body for relatives to find, to ask themselves “what did I do wrong” when it isn’t about them. It’s about me. There will be no notes. No questions. Because (fate willing) I will not have to make that choice. I just hope I have time to write down all the things I think need to be related before that Mind That Bus moment happens.
Like Dead Poets Society. It’s not actually about the suicidal character; or rather, it not just about him. It’s about the mousy little guy who follows along for the whole film (my first conscious introduction to Ethan Hawke, another actor who’s films I try not to miss) never hazarding more than is required of him because he is too afraid to take that chance. It’s about all the other characters, sucking all the marrow because they had a teacher who encouraged them to live life to its fullest. Because we’re only here for a brief moment, and then we’re gone.
I’ve meant to write a postscript to this one for awhile now. On the revelation that Robin suffered from early stages of Parkinson’s, and that he had that road ahead of him clearly mapped out by others (including his friend Micheal J. Fox whose charity he donated to) I can easily imagine that he chose his time to leave rather than wait for the disease to rob him of his independence. Preferred to be remembered this way, rather than risk being the subject of pity; no longer able to ask people to laugh at him, with him.
That he had to kill himself the way he did is more an indictment of current societal norms than it is of Robin Williams himself. When you are stricken with a disease for which there is no cure, one that will slowly destroy what you were if not actually kill you outright, you are faced with some pretty hard choices. One of them is the ability to say “Ok, I’ve had enough now. I’d like to just check out.” A choice which is denied to the sufferer in nearly every case; requiring those determined enough to seek solutions to the problem, to resort to cruder tactics than they would have preferred had they actually had a choice.
I am convinced that Robin Williams is one of those people. Being denied the right to end his life legally at some point later, he chose that time and that place to act, right or wrong.
For me, it was the wrong choice. But then I’m not Robin Williams. Never wanted to be him. I just enjoyed his pointed wit, his ability to flit apparently effortlessly through characters; his willingness to laugh, and to encourage us to laugh, at his all too human foibles. In the end, it was those foibles, those failings, that killed him.
We sat down and rewatched Dead Poets Society as a family last week. Just wanted to see if his chosen ending for his life alters the way the film feels. In reflection, I think this film actually captures the real Robin; both the flashy in-your-face moments of characterization, and the quiet man who contemplates the meaning of life, tries to communicate the drive to find meaning to younger minds. In any case it holds up well, and I think I’ll have to dig up some of his other early works, dust off the Laser Disk player if I have to. Re-experience his work again, while the pain is fresh. Just to see if I can still laugh with him. I think I need a good laugh.
“O Me! O life!… of the questions of these recurring; Of the endless trains of the faithless—of cities fill’d with the foolish; Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?) Of eyes that vainly crave the light—of the objects mean—of the struggle ever renew’d; Of the poor results of all—of the plodding and sordid crowds I see around me; Of the empty and useless years of the rest—with the rest me intertwined; The question, O me! so sad, recurring—What good amid these, O me, O life? Answer. That you are here—that life exists, and identity; That the powerful play goes on, and you will contribute a verse.” – Walt Whitman, Leaves of Grass
I ran across this article submitted by Susan Schneider Williams (Robin Williams’s widow) to the journal Neurology. He apparently suffered from Lewy Body disease, undiagnosed until after his death. She discusses her experience with him in the final days of his life in the article and in this audio clip from the journal.
Although not alone, his case was extreme. Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.
Robin is and will always be a larger-than-life spirit who was inside the body of a normal man with a human brain. He just happened to be that 1 in 6 who is affected by brain disease.
Not only did I lose my husband to LBD, I lost my best friend. Robin and I had in each other a safe harbor of unconditional love that we had both always longed for. For 7 years together, we got to tell each other our greatest hopes and fears without any judgment, just safety. As we said often to one another, we were each other’s anchor and mojo: that magical elixir of feeling grounded and inspired at the same time by each other’s presence.
One of my favorite bedrock things we would do together was review how our days went. Often, this was more than just at the end of the day. It did not matter if we were both working at home, traveling together, or if he was on the road. We would discuss our joys and triumphs, our fears and insecurities, and our concerns. Any obstacles life threw at us individually or as a couple were somehow surmountable because we had each other.
The causes of his suicide are far more complex than anyone could understand until long after he was gone. I’m just now (Oct. 2017) able to look back on him and his work with a calm dispassion. Finally over the emotional hurdle of his leaving us in this way.
Another good interview with Julia Sweeney; this time concerning the upcoming movie made from her show “Letting Go of God“.
I neglected to mention the two episodes in the archive in which you can learn more about the hosts. Two of the earliest episodes feature one of the co-hosts interviewing the other. Both are memorable. One is Losing Faith in Faith in which we hear more about the history of the former pastor Dan Barker. The other is Religion’s Harm to Women and the history of Annie Laurie Gaylor. If I had to pick my favorite of the two, Ms. Gaylor is a more interesting interview subject (sorry Dan) although there is much to learn from Dan’s trip from believer to non-believer.
2006 Archive episode. November 11, 2006 – Physician-Assisted Suicide
Physician-Assisted Suicide is an episode that also struck a cord with me. An interview with Betty Rollin concerning Oregon’s physician assisted suicide law. If you don’t have a say in how your life ends, whose life is it anyway? Betty Rollin’s mother was dying, and thusly she has a very strong opinion on the subject herself. Author of “First You Cry” and “Final Wishes”; if you’ve ever had a loved one suffering from a long term terminal illness, then you’ll probably have an interest in this episode.
Speaking of Boston Legal (I was) the episode “Live Big” (that aired on the 21st) features Alan Shore once again on the horns of an ethical dilemma. His client granted his Alzheimer’s afflicted wife’s request to have her life terminated.
I love watching James Spader’s characterization of Alan Shore. He’s so wonderfully dry. The contrasting relationship with bombastic ‘Denny Crane’ (William Shatner) makes an excellent sounding board (and vice versa) for discussion points within the episode.
Denny Crane: That’s how dad went. Morphine drip. Alan Shore: How did you get the doctor to do it? Denny Crane: “Denny Crane”. It was the real thing then.
Spader’s ‘Shore’ is clearly uncomfortable with the whole subject, but he believes that his client should not be labeled a criminal, and bases his closing argument on that very basic fact.
The A.D.A.’s argument amounts to: he broke the law, he’s a criminal, and we can’t afford to start down the slippery slope of allowing assisted suicide, what happens when people start getting rid of the old, sick people they just don’t want around anymore.
Shore’s argument goes like this:
The dirty little secret is; we went down that slope, years ago. Officially we say we’re against assisted suicide; but it goes on, all the time. 70% of all deaths in hospitals are due to decisions to let patients die. Whether it’s morphine drips or respirators, hydration tubes. With all due respect to the Terry Schiavo fanfare, patients are assisted with death, all across the country, all the time.
As for regulating motive, here’s a thought, investigate it. if we suspect foul play have the police ask questions, if it smells funny, prosecute.
But here, there is no suggestion that Mr. Myerson’s motive was anything other than to satisfy his wifes wishes and spare her the extreme indignity of the rotting of her brain. Can you imagine? Would you want to live like that?
I had a dog for 12 years. His name was Allen. That was his name when I got him. He had cancer in the end. That, in conjunction with severe hip dysplasia, and he was in unbearable pain. My vet recommended, and I agreed, to euthanize him. It was ‘humane’ which we as society endeavor to be, for animals.
My client’s act was a humane one. It was a sorrowful one. Mrs. Myerson’s nurse testified as to the profound love that Ryan Myerson had for his wife. Sometimes the ultimate act of love and kindness…
If you think this man is a criminal send him to jail. If you don’t, don’t.
His client is, of course, acquitted. A classic case of jury nullification, a legitimate finding by the jury that the law was wrongly applied in this instance.
Another example of why I love the show evolves afterwards. Once again in a conversation between Denny and Alan, the nature of “who’s life is it anyway” is explored. An excellent conclusion to the episode, and what I’ve come to expect from the show.