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Knowing is half the battle

April 28th, 2008

I mean, not to draw deep meaning from the G.I. Joe cartoons, but really, it is.  Paying attention to my illness, as annoying as it is to have to be that self-aware, is the only way to ensure that I keep myself out of trouble.  And I’m pretty good at that part.  But.  But?

Did you know that taking a B-vitamin complex supplement has been clinically found to elevate mood in people suffering depression, as has exercise?  

Did you know that Omega-3 fatty acids have been shown to increase time between depressive episodes, among people suffering from unipolar and bipolar depression?  I did, but I’d never read the studies.

Did you know that clinical research is tending to show that antidepressants do not affect the recurrence or severity of depressive episodes in people with bipolar disorder ?  I didn’t, and when it came up during a medication discussion with my psychiatrist a few weeks ago, I was surprised.  I don’t know why– we already knew that antidepressants alone can actually trigger a manic episode, leading to an even worse depressive crash thereafter.

I’m not a doctor.  I am a lawyer who has worked with doctors, extensively.  I am also a civil litigation attorney, used to defending cases where people’s medical records are at issue.  I consider myself well-versed in the news, and I thought I’d done my reading about bipolar, by keeping up with the science and health sections of the Boston Globe (hooray for proximity to one of the top medical areas in the world) and the New York Times, my “paper of record.”  But I still missed things, and I’m embarrassed.  I’m not doing my work, doing the reading that I need to do to be aware of developments in the science.  Especially since brain chemistry is affected by hormones from all over the body, and is “hideously complex,” as my psychiatrist says.  I tend to think of it as playing darts, blindfolded, while balancing on one leg– there’s still so much to be learned.

I’m lucky to have a wonderful set of doctors caring for me.  But they can’t help me with symptoms and behaviors I don’t know are important, and so haven’t reported to them.  Too, doing my reading may give me a new perspective on something I’d never thought about, opening up a new avenue for treatment.  Doing you bipolar homework needn’t be a hypochondriac thing, nor need it be a distrust of your doctors’ advice or ability to keep up with the reading.  It’s simply this:  it takes two to tango, one to lead, and one to follow.  But the one who follows isn’t the patient– it’s the doctor.  My doctors can only treat what they’re aware of.  If I don’t stay abreast of the research, and combine that with my work to mood chart, med chart, symptom chart, then I am not leading, and we’re going to step on each other’s toes or crash into a wall eventually, having steered them in the wrong direction. 

So here’s what I’ve done in my battle to know better.  I’m using my gmail account more efficiently.  I set up a Google Calendar on which to record when I took my meds– since I check my email a lot, switching over to the calendar for a few minutes isn’t too time-consuming.  I take my meds three times a day– it’s hard to keep track of, even with my pill counter– but I’ve set up alarms in my calendar to go to my cell phone, to remind me.  I also enter symptoms– diahrrhea?  Worth tracking, in case I’m having a toxicity episode.  More clumsiness than usual?  A headache that’s different from my regular headaches?  Bad sleep, without the pleasantly weird dreams my medications usually give me?  Irritability?  Anything, and I do mean ANYTHING, that seems interesting or out of the ordinary goes in there.  I then did a brave thing– I emailed an invitation to share the calendars to my psychiatrist, my therapist, and my primary care doctor.  I’m a pretty reliable patient, luckily I’ve never gotten too manic… but knowing they can read the calendar whenever they want, and see how I’m doing, is comforting.  It also gives them a way to hold me accountable if I am NOT reporting things accurately, and if I’m not updating the calendar.  That all keeps them in the know.

To keep me in the know?  Google Alerts.  I set up alerts to come to me once a week about “bipolar research,” “lithium research,” and “depression research.”  I may have to tweak the search descriptions after I start getting my reports, but at this point I figure over-inclusiveness is better– I can use the “Advanced Search” options to refine the queries after I see what I get.  I’m also in the process of setting up better bookmarks to mental health sites such as NAMI and DBSA, as well as NIMH, and a Google Calendar reminder to spend an hour, once a week, checking up on their science alerts.  After all, an hour’s not too much time, since I can’t know too much– especially when I think of the hours that might be lost if I know too little.

(You can ask Google for an invitation to a Gmail account from the Gmail front page.)

Sore spot

March 31st, 2008

When I was in high school, I played the organized (thuggery) sport of field hockey.  It’s not a genteel sport for ladies, or at least it wasn’t in the Greater Boston Division One league.  Pushing, shoving, high sticking, tripping and fouling when we hoped the refs weren’t looking—if it only pushed the bounds of dirty, we pushed it.  (And had more than a few fistfights after games to prove it.)  But it was all a part of our love of the game. 

I wasn’t an all-around athlete, but I was a good defenseman—halfback, fullback, and occasional goalie as the changes in the line up dictated.  But I could drive and tackle, defend corners, pass, flick, scoop, and make penalty shots with the best.  I was blessed with a team that functioned as a team.  My offense was there, up ahead, making themselves open so I could dribble and dodge the other teams offense, and push them the ball or drive it up the sidelines to a waiting wing or center.  I had a long drive, so I also had league record number of assists for a defenseman.  I drove a ball so hard one time from just the other side of the 50 yard line that some of the opposing players jumped out of the way.  And the joy of the game well played more than made up for the laps I hated to run, the sprints I had to do.  Stickwork drills?  All over that.  Running?  Not so much.  But tackling an opposing player, stealing the ball, passing it to my wing, and having her flick it into the upper corner of the net?  All the sprints were worth it. 

Life is like field hockey in that it’s played with very little external padding.  When I played, we wore mouthpieces and shin guards.  That’s it.  No helmets, no padded glovers, no chest pads—despite the fact that concussions from balls to the head, and ruptured spleens from balls and stick-ends to the gut were a frequent occurrence.  And even with the padding, we were still open to injury.  Broken fingers, noses?  I’ve had several, some twice.  And that ball?  A larger-than-baseball-sized solid plastic ball, driven at as much as 75 mph (my hardest driving speed) by a fiberglass-reinforced oak stick of no small dimensions.  It hurts. 

In my sophomore year, I got whacked on my left shin one day intercepting a straight-for-the-goal drive from a player on the Bishop Fenwick team, and even through the shin pad, I could feel it start to sting.  The hit was so hard it didn’t even really bruise—it just became a hard, sore mass right in the center of the shin.  For weeks, it sent stinging, shooting pain up my leg, every time I ran on it.  Since the xray was negative, I learned to ignore it.  For months afterward, the lightest brush was excruciating.  So I taped a small gel pad on between my shinguard and my leg, and kept playing.  For three years, it was tender to the touch.  I learned not to touch it.  I never thought it would heal—but it did, while my attention was elsewhere.  (Only to promptly get whacked again in the same place during college field hockey tryouts—but that’s another life metaphor, for another time.)

I was reminded of this after a recent fight with my mom, who, less than three weeks after her release from the hospital for another psychotic/manic episode, accused my brother and I of trying to take control of her money and leave her in the poorhouse.  Currently, we’re not speaking, since she had the gall to tell me that I had no idea what being depressed was like. (I believe I said “I find that hard to believe, since you gave me the f-cking bipolar…nice f-cking present.  Thanks.”).  Afterward, I was angry for letting her goad me, and then angry at her for being Queen MeMeMe– but then I accepted that I’ve just got sore spots that she pokes, hard, intentionally or not.  But I was still despairing of the whole situation, until I remembered what I’d learned from my field hockey bruise– some things just take longer to heal.  Even if you think they never will, they very well might, long after you’ve learned to function, walking wounded, and have gotten on with things.  One day, the sore spot will be gone.  So for now, I am going to ignore my most recent sore spot, pad it as best I can, and trust that it’ll heal when it’s good and ready.  It’s the only thing I can do– I’ve got a life to live in the meantime.

Things I Wish You Could Understand Right Now

March 17th, 2008

That you are more irritable, more angry, every day.

That I am not The Enemy.

That I am here because I choose to be.

That there are so many landmines around currently, I can’t take a step in any direction without setting one off.

That I have made, and continue to make, sacrifices of myself in order to be with you.

That I make these sacrifices because I love you.

That I do not feel like a martyr.

That  following a burst of anger just before bedtime, while you go to sleep with the aid of sedatives and sleeping pills, I am left awake, crying, hurt.

That I don’t have anyone to confide in–not really–partly because I want to protect the way you are perceived by others, and “this” is not “you.”

That I feel very, very alone.

That I temper every single decision I make, no matter how seemingly insignificant, with what possible effect it may have on you.

That I resent not only not being able to look forward to Springtime, but having to dread its coming.

That I feel like I’m being “used up” faster than I should be.

That when I am sick, like I am now, I try to somehow “schedule” my illness and treatments around what I think you can handle.

That I sometimes feel trapped, even though intellectually I know that I’m not.

That I have learned more than you’d believe about detachment.

That I refuse to be manipulated by The Bipolar Beast.

That a great deal of my strength in dealing with these bad times comes from knowing that I am only here by choice, and that the power to stay or leave is all mine.   I can say “I don’t have to take this,” and mean it.

That the fact that, so far, I have chosen to, and have been able to “take this,” does not mean that I always will be able to.

That you do keep getting better.  Even the worst times now are better than the best times “then.”

That I appreciate when you try.

That I understand that it is hard.

That I KNOW it’s not fair.

That I am your single most loyal ally on all of God’s earth.

That if I don’t figure out how to get some of myself back, there won’t be anything left to give to you.

That by the time you could read these words with understanding and empathy, they will no longer be relevant, because you’ll be “yourself” again.

That I’m not sure how long I can hold out waiting for that time to come this year.

Dear Mom

March 3rd, 2008

Dear Mom:

Brother and I owe you an apology– we have been indulging in a months-long fantasy that you’ve been OK, ever since you left here in November. We should have known that two breaks in two months was too much, and come out to visit earlier. But we’ve been hoping and wishing that you’d be compliant, and take your meds, and go to your shrink, and behave like a rational adult. Why we engaged in this mutual delusion, when you never took responsibility before you were diagnosed, I don’t know. But I’m sorry we let you slide for so long.

Instead, when you stopped answering your phone this week and disconnected the answering machine “because God told you to,” I had a sense of dread that This Was It. And then I got the call from Shrink that you’d missed a second appointment in a row. When Aunt got over there to check on you at Brother’s request, it wasn’t pretty. You answered the door stark naked. The toilet had overflowed, and there was a more than dubious puddle out into the hallway and into your bedroom. The management company had to tear it up.

To be fair to us, even after we discovered that your mania had allowed you to lie about med compliance in a calm and even tone, there were long periods where you seemed really lucid. You had normal conversations, recalled things from past calls, had no trouble recalling words or nouns, and didn’t drift off, mid-sentence. Your intelligence masked how far off the deep end you were—it was only seeing you in person that would allow the observer to see all the things you’d thrown away, and read all the stacks of gibberish God had told you to write.

When Brother got there, he was able to observe those things. He was also able to see how suggestible you were. We’re both worried for what this means to your bank account. And you refused to go for inpatient treatment. Well, your shrink doesn’t want you back as a patient, so if Brother can’t find you a new one next week with the help of the county social services agency I’ll be calling, we may be committing you anyway.

You see, we need you stable enough so that you don’t act up on the plane ride home. Because you can’t stay out there anymore. You can’t be trusted to take your medications or attend your appointments, and we can’t fly out to the West Coast to frog march you into every appointment. Once we get you qualified for Disability, there’ll be a supplement to your income, too, and hopefully we can get you into a nice Assisted Living facility where you can take some of your stuff.

We’re not looking forward to the fight in getting you home. We’re hoping that physically watching you take your meds every day for two weeks will get you stabilized enough that you won’t fight about it. But if we have to have you declared incompetent over your objections, so be it. It might almost be better if you stayed as you are, docile and agreeable, while we pack your things, change all your financial papers, and deal with your current landlord.

If you do regain some lucidity, I know you’re going to think we’re just trying to take over your life, but that’s the furthest thing from the truth. See, I can’t speak for Brother, but I really want very little to do with you. I want you to be happy and safe—I don’t hate you—but I don’t want you in my life, really, except at the outskirts. Bringing you back means weekly visits and caretaking and tolerance of your narcissistic bullshit, when all the while I really want to slap you for being so selfish.

At the same time, Brother and I are happy for you, if not us, inasmuch as your separation from reality seems to have stabilized at a happy point. You’re not paranoid or angry or violent, and you know who and where you are. While a nice scary psychotic break would have at least landed you in the hospital, giving us some leeway in getting them to keep you longer to try out a better medication regimen, I don’t wish you the scary visions and voices that would have required.

We don’t know what’s going to happen—we’ve been worried you were undermedicated anyway, and on the wrong mood stabilizer to boot, so we’re hoping we can get you something back to normal. But it’s been a while now that you’ve been fluctuating in this narrow band of crazy, and that does real damage to your brain, even though you didn’t believe me when I tried to talk to you about the need to take your meds, back when this whole thing started. So, if you remain the precocious and delusional three year old that you are right now, well, it could be worse.

You may never read this letter. Even if you do, your bipolar and your narcissism may prevent you from appreciating the best intentions that Brother and I have in setting you up someplace where you can have some independence, and yet still be taken care of. Despite all your faults, despite all the damage you did, you did instill in us a sense of responsibility, of caring for those not capable. I’m sorry, too, that I can’t end this letter by saying that I forgive you. I don’t, and I may not be able to. But I won’t hold it against you, either, and that’s to your credit, no matter everything else.

Daughter knows best?

February 25th, 2008

It scares me that I, the crazy one, seem to understand best what’s going on in my mother’s head.  It also scares me that despite all the harm that she’s caused me over the course of my life, that I am also the most diligent at spanning the 3000 physical miles and 3 million mental and emotional miles in order to check in with her.  How scary that I, the one who hates and loathes her with much of my being, am the one who’s the most responsible.

My aunt, an older sister, has no insight into the mania/paranoia/delusions, and still takes it personally when my mother lashes out at her during an episode.  Almost a year from mom’s first diagnosis, she’s only now beginning to understand that distancing isn’t just necessary, it’s a lifesaver.  Granted, she’s got her own issues going on, and isn’t yet properly medicated and/or in a working therapeutic relationship, but you’d think that a lifetime of sisterhood would lend her better insight, better tolerance, than I.

My younger brother, the summa cum laude biochemistry graduate from an Ivy League school, perfect-scorer on his MCATs, decade-long pharmaceutical reasearcher who’s practically his own controlled experiment in SSRI’s, MAOI’s and tricyclics, tends to treat it all as pathological.  He doesn’t think, or doesn’t want to think, about the problems of underlying personality (narcissistic to the point of delusion) and the way they factor in to the difficulty to date in managing her disease.  He doesn’t yet get how the lack of a proper med combo to control her manic swings isn’t just the mania itself, but is further fed by her narcissistic insistence that she knows best when it comes to discontinuing her antipsychotics– she’s no longer feeling paranoid, and the voices aren’t so loud, so why shouldn’t she, she knows herself best– and so he thinks that it should be enough just to tinker with the meds until she’s on a better mood stabilizer and an antipsychotic that work.

And her psychiatrist, who seems to know what he’s doing, but he only sees her every two months and not usually during her worst manias, because she’s become a clever liar and because she cycles every six weeks?  Well, he just doesn’t see her when she’s bad, when she’s calling in the middle of the night, wanting me to do something from 3000 miles away, when she can’t even write down the phone numbers that I look up for her because she says she can’t find a pen or can’t make her hands form the numbers, or more usually, that “God says I can’t call them, you have to,” or that “God made the phone stop working, except for the speeddial.”  He doesn’t see that.  He also doesn’t see the narcissism at work, erasing the memories of those episodes in the aftermath, so that she says “oh, no” when I remind her what happened and tell her to update her speeddial.

Someone has to put the fear of God into her, and my attempts have failed.  I can’t make her stay on her antipsychotic.  I can’t jolt her from her narcissism, provoke the rock-bottoming that is sometimes necessary to break through that lying self-regard.  But if I can threaten her independence with the assistance of the county mental health social workers, and threaten to lock up her bank accounts against her spendthrift tendencies, make it so that someone out there is checking in on her every two weeks?  That might do it.  The concern of people who she ought to love enough to listen to isn’t doing it.  And frankly, if she never spoke to me again because of it?  I’d be happy, so long as she took her damned meds and went to therapy and did the stuff she’s supposed to do to manage her disease.

The problem is, she’s never acted like a grownup my entire life.  And I’ve been too much of a grownup since I was barely out of toddlerhood.  It doesn’t so much scare me that I, who still struggle with managing my own bipolar, know best what she’s going through.  It scares me that I will have to continue to mother a mother who never mothered her daughter, and that I will always know best, that no one else will step in to fill the gap.  It scares me that I will always be her mother.  I don’t want to be her daughter, or anyone’s daughter.  I don’t want to be her mother, her anything.  I want a chance to find a “just me” that doesn’t require those roles.  I want relief.