Sunday, October 21, 2007

So much lost time

My therapist worries about me. A year ago she worried about me, too, but the reasons were completely different. Last October, I was barely functioning; I had a hurting, chemically unbalanced, chronically misfiring brain. Frankly, it sucked.

I am very quick to snap to attention when I see news of bipolar disorder on TV or in a magazine. When Oprah covered the topic recently, I was thrilled. Anything that sheds light on the disorder with facts and insight is a step in the right direction. My only criticism of Oprah's show was that nobody really made the point that BP is not an emotional problem--it is a very real, very physical, organic problem that requires lifelong medication. To leave out these facts is a disservice to those of us who have the illness.

I'm troubled even more every time I hear someone define bipolar disorder as nothing more than a person experiencing extreme moods varying between intense highs and lows. That isn't inaccurate, but oh, that it should be so simple. For me, moods are the least of my problem. It's all the hard-to-define crap in between that gets us in trouble. There's paranoia, racing thoughts, irrational beliefs, anxiety, inappropriate behavior, insomnia, and my personal favorite, an inability to shut up while, unfortunately, being completely and totally tactless.

Which brings me to last year. As of the spring of 2006, I'd been getting BP-specific treatment for about two years but I was getting worse, not better. My doctor took the bold step of taking me off of most of my medications. The pharmaceutical companies that make those drugs will tell you that they are not addictive; therefore what I experienced was not withdrawal, rather, it was a step-down reaction. If you ask me, whatever my reaction was, it was grossly understated in the literature.

About 15 months ago, I started using transdermal selegiline, otherwise known as EMSAM. This is what my doctor promises is a "very powerful antidepressant." This is a good thing, and EMSAM is a worthwhile leap of faith for people like me who can't take SSRIs and who don't respond to anything else, including tricyclic ADs. The downside is that it takes forever to kick in. It took months before the effects were noticeable, and I was backsliding that entire time. Just as I started to feel relief, something terrible happened. I ran out of money.

Due to an enormous insurance glitch, I was paying close to $600 per month for pharmaceuticals alone, with an additional $200 for office visits. I decided to cut back on my medications until I could scrape together enough money to refill my prescriptions. I ran out of money before I got to the part about the refills. Then I ran out of meds. After months of gaining ground, I was suddenly falling right back down the rabbit hole.

I was sad. Deeply, terribly, profoundly sad. It hurt to breathe. My body felt like it was affected by some freakish super-gravity that made it difficult to push myself through the day. Light hurt my eyes and the dark made my mind race. I was chronically heartbroken and keenly aware that nobody cared. My insomnia was brutal but when I did sleep, I was plagued by nightmares. My doctor didn't see how bad things had gotten largely because throughout the whole ordeal, I remained "highly functional." But I wasn't functioning at all. I was dying. At least, it felt that way.

I've said it before, and I still believe it that BP won't kill you--it will only make you wish you were dead. There's a reason this illness has such a high suicide rate.

Eventually, I got the medication I needed and bit by bit, regained my health. Unfortunately, I had lost a lot of time. I lost my way and had a lot of trouble figuring out who I had been and who I had become. My soul hurt, but my head started putting itself back together. I never missed a day of work, despite the fact that being there was agonizing because I believed (correctly, I think) that people were talking about me behind my back and speculating about the changes to my personality. I'm sure those conversations did not come out of concern as much as judgment and disdain.

A year ago this time, I had no real interest in continuing to live, but I faked it. I worked, I saw people, I ran errands, and I lived what passed for a relatively normal life. I did nothing extra, though, nothing that required effort, attention, or caring.

Things have changed. I work a lot. I put in 70-hour work weeks. I have some time-intensive hobbies. I write. I do things around the house. I spend obscene amounts of time on the Internet. Along with two other people, I'm deep in the throes of starting up a kick-ass nonprofit that's going to benefit some amazing people. Except for the raging insomnia, this is all good and productive and of great concern to my therapist. I am doing too much and I know that's against medical advice. The thing is, once you've been sick and then better, and then sicker and then stable, you're always waiting for the other shoe to drop. It's a damned big shoe, too. The thud is profound.

I can't afford to be cautious. I have already lost too much time, productivity, and brain activity to something I can't really control. Slow down? Take it easy? Coddle my brain? Seriously? The fact remains that no matter how closely I follow medical protocols prescribed for my condition, the meds can fail or the brain can re-work itself so that the illness rises up again. Caution is no guarantee of continued therapeutic success. I have to keep going. I need the world to understand that no matter what, I busted my ass to keep going and I tried very hard to have worth and to contribute, even when it was the most agonizing thing to do.

I am making up for lost time, and when I surpass that deficit of worthwhile time, I will start banking credits I can fall back on when that shoe does, inevitably drop. I have a lot of catching up to do and if past experience is any indication, a lot of credits to squirrel away. Please don't hold me back.


Spilling Ink said...

Oh, May. You have been through hell. You are a champion and a survivor! I know how it feels to scramble financially due to these sorts of expenses. For me, I am not always very functional during crisis times, which brings the added burden of screwed up finances that can lead to having less money than usual at a time when I need MORE.

I understand, for different but similar reasons, why you feel the need to get so much done. For me, it's because of flashbacks and PTSD. When I am doing 'ok', it feels like an emergency that I do anything and everything I can because I don't know when the memories, scary feelings and flashbacks will crank into high gear again and terrifify me to the point of knocking me flat on my ass. I was once a complete mess for a whole year and a half after an unbelievably horrible flashback made me remember and think about something very, very bad that had happened to me. I carry the fear every day that it can happen again and bring my life to a complete halt.

I remember once writing that I wished I had known what would happen, wished I had known that my life would be over at 39 when the memories found me. I wrote something like, "I would have tried so much harder to accomplish some things and make something of my life." The whole damn thing is just sad.

May Voirrey said...

Somewhere in my pre-blog journal, I wrote something nearly identical to your last paragraph. I also wrote that I think the reason we are not allowed to see our future is because if we could see what was ahead, we would just lie down and quit, not believing we could possibly conquer those challenges.

We are capable of working through more than we think; we just don't get to see that until it's in retrospect.