A couple weeks ago I sat with a psychiatrist for about two hours and emerged with a brand new diagnostic bumper sticker to slap on myself – hypomania.
More curious than bothered, I did as I had with the other clinical label I carry, Parkinson’s disease, and asked: what precisely is mania?
Reading through some of the literature and talking to a few patients and doctors I soon saw that it too doesn’t refer to anything specific as it also has no biological correlate. Like most psych/neuro conditions it is a hodgepodge of various symptoms that we clump together for reasons that don’t always make sense.
Looking at that list above I can see why many think I fall rather neatly into this box. I even used some of the exact same words above when describing to my psychiatrist and others the things that I was thinking and experiencing.
Still I wonder, why do we use these labels that are so non-specific that they are rendered nearly meaningless by the shear breadth of symptoms/moods/traits that they try to describe?
Society and Self
For societies to function it is vital that its citizens conform to certain agreed upon standards as to what is appropriate behavior. Those that cannot or refuse to conform can be problematic because if that kind of behavior spreads it challenges the morals and values of the given society and can tear at the social order that binds communities together.
The problem there is biology. Biology operates on a spectrum, there are no notions of good or bad, right or wrong. There are only probabilities, an infinity of permutations guided by one driving principle, survival.
For example, when two neurons “choose” to make a synaptic connection, there are an unfathomable number of different ways that single connection can be made and then maintained. Multiply that by all the different cascading effects that result from that connection, remembering that each neuron is connected to about a thousand others, and we can start to see just how much diversity we are talking about and why it is that no two living creatures will ever be exact replicas of one another.
This is also true with personalities and personality disorders. Given all the variables that go into creating an individuals personality, it is no wonder why we have nearly eight billion people on earth, each with their own unique biologically determined personality and identity.
And yet, we have predetermined for each individual how they should and should not behave in a given environment. Somehow those rules and norms actually work fairly well in most places and times in keeping up a harmonious society. Once in a while though something comes along that strains those limits.
DBS and Me
Today (9/29) I will finally be getting the adaptive settings in my deep brain stimulator turned on. It is a day that I have been looking forward to for a long time as the potential that adaptive deep brain stimulation holds is a big part of the reason why I chose to undergo the surgery and be part of this clinical trial in the first place.
Yet, these new adaptive settings come with their fair share of concerns. One of the biggest that I, my doctors, and the people around me will be looking for is that it may put me into an almost permanent state of mania. In the past those behaviors that society deems manic were all certainly exacerbated each time we tweaked up the dial on my stimulator. Usually they were most strongly felt the day after and then slowly came back down till they reached a steady state over the next week or so. These adaptive settings, which in theory will be constantly fluctuating throughout every day, may as a result induce a more permanent effect.
The problem there as I see it though is who am I doing this for and why? I did not go through DBS so that I could better fit in to society, I went through it to give me more control over my movements caused by my particular movement disorder.
I guess the question then may become how much am I and the people around me willing to trade off? If aDBS perfectly restores my ability to amble about as dexterously as I please but I am put into a permanent hypomanic state, is that better for me than the alternative? Of course, as I mentioned above, nothing in life is that black and white, there will probably be some middle ground that we hit where my movements are relatively well controlled and my behavior is not tipped too far one way or the other.
And yet, there is another underlying question to this that I’m not sure anyone can answer. What if these “episodes” I have experienced are not really driven by the stimulation as much as they are just me being me? After all, the manic episodes I have thus far experienced have consistently gone in lock-step with my ability to move properly again.
For the last eight years I have dealt with the progressive decline in my motor symptoms caused by my own brand of neurodegeneration which society likes to label as “Parkinson’s disease”. Some would say that to know who I am or to go back to whatever my baseline personality is, I simply have to go back to who I was before that diagnosis. But I have grown more as an individual and learned more about myself and the world around me over these past eight years than any other period of my life. How could I possibly be expected to be that person again or to even have whatever any doctor would consider to be a “baseline” personality?
Well, almost time to call a cab and go to the hospital once again. Just wanted to assure those reading that despite the tone of some of the writing above, I am more excited than ever to see what this device inside me is really capable of. Can not wait to see what this day has in store.
Keeping my fingers crossed for you.
You again show uncommon courage in your candor, uncommon insight in your self-analysis, and uncommon compassion in your hopes that others will benefit. And your writing and philosophizing ain’t too bad either!
Like most of us living with these symptoms, I crave freedom of movement. Sucks that we sometimes have to make a choice between fluidity and feelings of others, among other things. The longer I live with this so-called disease, the more I understand such dilemmas – and hopefully the more I understand there’s often more power in less physical functionality. Fact is, we can use whatever we’re left with to exact change.
Given the choice between physical and mental health, I want physical health to have bags packed and out the f______ door before the last bus.
Go Ben go
A sense of euphoria (mania) at progressively getting your freedom of movement back is a pretty natural reaction…and one that you are probably still adjusting to after so many years away from having a body that responds in the way you want it to, Ben. Your lucidity is a gift, and it will continue to flourish as you adjust to the adaptive settings being “on.” Thanks for sharing your journey with us!
I don’t think we’re built (psychologically) with a frame of reference that allows us to think clearly about which of our potential personalities is better. That said, the thought experiment I like to run is, “If I could take a pill that would reset my brain to the neuroplasticity of a 3-year-old, would I?” There are a lot of risks in such a “reset”, but there’s always a sliver of possibility that “future me” (more social but ADD me? more scientifically brilliant, but boring me? more risk-taking but bipolar me?) would be a happier, more fulfilled, or more positively impactful me.
Thanks for being so forthright with your experience. I just put my upcoming DBS on hold after reading about your manic episodes. I had several (10+) manic episodes while on 2400mg of CL a day. Unfortunately, they were not all positive as I was in the middle of a divorce and the depressive mania has no positive to it. I’m hoping mania as a side effect is more related to STN rather than Gbi stimulation, but I am pausing to investigate. I would not in no way choose my mania over symptoms. I can suffer but can’t handle the legal costs of mani-depression. Off the high doses, back down to 900mg, I am fine. Feel fairly good except when stressors of my divorce flare up and of course my symptoms are out of control and meds are all over the place.
Im wondering if waiting on divorce completion and letting me get to a normal baseline is the right approach. Oh well, research needed.
Thanks for your part in shouting the realities of our little “gift” out loud.