Living With the Invisible

Recently I've caught some pieces of the NPR series Invisibilia - a show that shares stories and ideas about the non-visible things that influence our lives.  It's thoroughly fascinating, and I am completely smitten.  This type of show is exactly up my alley.  A thought-provoking public radio show dealing with the depth of humanity, interaction, connection, and influence?  I am so there.  You know the stereotypical twenty-something "intellectual" college kid lounging on a extra long twin bed, joint in one hand, beer in the other, tribal-patterned tapestry in the background, pontificating philosophy, ethics, religion, and politics deep into the morning?

That was me, only I was sober.

Wheaton College, Norton, MA, 2006.  I'm on the left.

No really, I was sober (see my empty hands?).

But let's be honest, that's still me, sober or not.  Now, however, I go to bed way earlier, I tend to be better informed, I'm better at disagreeing amicably, and I'm more interested in hearing what other ideas are out there, rather than forcefully touting my own... at least that's what I keep telling myself.  My point is that Invisibilia prompted me to think about how my life has been shaped by the "invisible" or more likely the "barely-visible" or really the "incredibly-difficult-to-see-with-the-human-eye."  And while I'm not quite ready to pitch them my story to feature on the show, I've got enough content to at least force you to read for a bit.

First, the obvious "invisible" force in my life is cancer; it is a tricky beast, and can be hard to spot.  Since it starts on a cellular level, some people have cancerous cells and don't know it.  Some people have "precancerous cells" in their bodies that are at a higher risk of developing into cancer (though they often don't change at all).  And even once you know you have cancer it can be tricky to see whether it's still there or not, like in my case.  I had several tumors, but they were all treated and removed successfully, and since then there has been no evidence of anything new.  In fact, I had more scans several weeks ago, and again, everything came back clear.  I am staying on the Pazo, and handling my side effects better (I have a good inch of bright white hair growth), but everything still looks good; I am in remission.  I will go for scans of my lungs three months later, and then for my knee in another six.  If those look good too, I'll go even longer between scans after that.

But (there's always a but), because individual cells don't show up on CT or MRI scans, who knows what's really in there?  Maybe there really isn't anything left to be worried about, but maybe there is.  Maybe those petulant little cells are thinking they are tired of their smallness and want to grow up and take over the world that is my person, and they are just biding their time.  Those minute, "invisible" jerks have the power to control my present and my future, and whether they are there or not, we won't know until they decide to rear their ugly heads (or at least until Erhan and Tom's graduate school research gets mainstreamed).  Cancer cells may be an actual, physical thing, no matter how small, and therefore ruling them out for a story on Invisibilia, but they influence me nonetheless.

Constantly thinking about the existence of tiny enemies inhabiting my body leads me to the next invisible force that controls me: anxiety.  Many, many people are familiar with anxiety, I am not alone in this experience, but it can manifest differently with all of us, and it can be very difficult for people to understand.  For me, my anxiety is fairly manageable, but occasionally it can be overwhelming.  This might be confusing to some of you, since physically I'm doing so well, but being in remission is actually pretty stressful; cancer is a chronic disease, and you never know if or when it might come back.  Early on in my treatment, I was perusing a "young adults with cancer" message board, and someone posted the Spoon Theory.  It was written by a person with lupus, but I think the basic premise can apply to anyone suffering chronic issues, mental or physical.  If you haven't yet, go read the Spoon Theory now, I'll wait.

Back?  Great!  Looking back on it now, there are so many scenarios in the Spoon Theory to which I relate.  I am working only three days a week not just for my physical health, but also for my mental health.  It requires a huge amount of mental energy to do my job.  I make a million snap-judgement decisions a day, and everything I do is scheduled down to the second.  Conflicts arise every day that must be handled with thoughtfulness and professionalism.  Then add the amount of love, caring, and positive influence these children need and crave, and by the end of the day I'm drained.  Teachers talk about needing to be "on" all day; you often don't get a physical break to pee, much less a mental one to clear your mind.  Don't get me wrong, I'm not complaining, and I'm not saying that only teachers experience this, but that's what life is like for me.  There's a reason why Tom is in charge of making dinner decisions on my work days.  There's a reason why I hesitate to set an alarm on my days off.  There's a reason why I have to ask Tom to tell me if I should go to that social event or stay home.  Or why I try to do all my work at school, no matter how early or late I'm there, and why I only do school work at home one day a week (Tuesdays).  My anxiety has taken a bite out of my ability to multitask, it's changed the way I work, and it's affected how I socialize.  Having anxiety doesn't mean I will freak out randomly (though it has happened), or that I "can't handle" the stress of a situation, but it does affect my entire life, regardless of whether or not you can see it.

Finally, I would argue that anxiety is not the only invisible force at work here; our public perception of mental health issues in general contributes to how I and many others live our lives.  We have a very serious lack of mental health support in this country, and I'd argue that because "mental health" is not something you can easily quantify or touch or point to and say "ow, this hurts", we, as a society, don't give it the respect it deserves.  We know it hurts when our friend steps on glass and cuts his foot because we can hear his yell, see the grimace on his face, and witness the blood dripping down his toes.  We feel comfortable saying "man, that doesn't look too good, you should probably go to a doctor," because we know blood is supposed to stay on the inside of your body, but we are not qualified to deal with it when it doesn't, and our friend knows this too.  But when a different friend sleeps through the day, or is always rescheduling plans, or gets unreasonably upset at the choice of movie we go to, then we say "what's with her?  She's gotta grow up."  We don't know what "hurts" and she may not even be able to tell us, so we assume that it's her problem and she just has to "get over it" on her own.  Or maybe we try and help, and suggest talking to someone, but she says no, thinking that it's not "that bad" or that only people who are "weak" or "crazy" need (or are forced to go to) a mental health professional.

Whether I was conscious of it or not, I used to be one of those people who thought you had to be slightly off your rocker or that something major or tragic must have happened to you to go talk to someone.  Now I know better; we would all be better off and much better equipped for those life-changing events that inevitably happen if we have a mental health professional on our team before the shit hits the fan, just like we have annual physicals with our medical doctors.  Despite my history with cancer, I am doing well physically because I have great medical doctors who check up on me regularly.  Likewise, I am dealing with my anxiety very well because I have a great psychologist that I see regularly.  She has helped me strengthen my ability to take on each day, and to accept without judgement the days that I cannot.  I do things like yoga and exercise, get massages, practice mindfulness and positive thinking, and yes, sometimes take drugs, but they are tools used in addition to my treatment with a psychologist, not in place of treatment with her.  The "invisible" stigma against mental health support has kept many deserving people from getting the professional help they need, and my personal experience has made that abundantly clear to me.

I realize I've ventured dangerously into the realm of being "preachy", but as Tom says "isn't that what blogs are for?"  Perhaps, but didn't I say earlier that I no longer "forcefully [tout] my own" ideas? Of course now I am doing exactly that, but everyone who reads this blog knows that I don't usually back down from trying to help someone else (sometimes even when they don't want it).  And, dear reader, that someone might be you; the statistics are out there: one in five American adults experience mental health issues at some point in their life.  Our mental health is a huge invisible force that influences our lives - individually and collectively, and should be an issue that we, as a country and a culture, give the proper respect and attention it deserves.

(Smugly sits back and waits for call from NPR)