Control.

I’ve been thinking a lot lately about control.  Specifically, about when I have it, when I don’t, when I’ve felt like I’ve needed it, and when it felt like the most natural, liberating thing in the world to let it go. 

 Caring people ask me every day if I’m feeling better, or when I will be better, or when I will know if I will be better.  To avoid making everyone except myself uncomfortable by saying “well, maybe never,” I tend to explain my current treatment program, which is called “Triple Therapy.”  In triple therapy, a number of drugs (Can you guess how many? Can you?) are provided to you in increasing doses until you reach the dose that doctors have found is medically optimal because it improves survival outcomes by slowing the progress of heart failure.  These drugs are, for me, a beta blocker (bisoprolol), an angiotensin II receptor blocker or ARB (candesartan), and a mineralocorticoid receptor antagonist, or MRA (spironolactone).  These drugs all make me dizzy, lightheaded, and sometimes nauseated.  They lower my blood pressure and heart rate and make my hands and feet numb.  I feel fatigued all the time, and have literally fallen asleep standing up, holding onto a cart in a grocery store.  There are other fun side effects which I won’t share in polite company.  Every time they increase a dose of one of these drugs, the side effects which I may have acclimated to become worse again. 

Until I have reached the optimum dose for these drugs and have given them a chance to work, my medical team won’t assess how my heart is looking or whether my function has improved.  I can’t know at this point if triple therapy is helping, other than to believe my specialists and the studies that show improved mortality rates.  All I can do is wait, take my pills and rest.  People are shocked when I tell them that I don’t know whether these drugs I am taking, which have radically changed how my life looks, are effective, and that I won’t know for some time.  I think that sense of the unknown and uncertainty for the future, is terrifying.  And I get that.  I really do.  But I think, having had to yield up control several months ago, I’m now living in that place where the lack of control and lack of knowing feels somehow liberating, in a strange way.  When you give up control, you gain.  I will try to explain what I mean.

It’s possible that I was sick for a long time before I went into the hospital on January 2nd.  It’s possible that you don’t present with the kind of damage I have in my heart unless you’ve been pushing through with an illness long past the point that you should have.  Regardless of whether my heart condition started earlier than we think, I WAS pushing, through pneumonia at the very least.  I was insisting on going to rehearsal and to performances for my show, because I *had* to (I didn’t have to, I had a marvellous, amazing understudy named Claire who went on for me after I was hospitalized and from all accounts was fabulous).  I trudged through the motions of the holidays, with all our family traditions, despite pretty much everyone in my family being sick and not really caring if we did or did not adhere to them.  I forced myself on the family trip to Parksville over New Years’, marching up and down the beach with my nephews, running around the playground, despite being so out of breath I couldn’t even sleep without huffing and puffing.  I showed up for work and steamrolled through year-end tasks.  Even before I got “sick-sick”, I pushed myself through my entire trip to India with my dad, walking for hours on end every day, climbing palace and temple staircases, shuffling through holy sites in thirty-five-degree heat, despite having major respiratory problems due to the pollution.  And going back to before my trip, I focused all my efforts on polishing off as much work as possible so my clients couldn’t complain when I went on holiday.  I can go back further.  I’ve been forcing things for a long time.

Being a trouper does not feel good.  It feels isolating. I felt like no one understood what I was going through.  I felt like no one was supporting me.  I was carrying the weight of the world, the office, the show, on my shoulders (in my mind).  I felt angry that I had such a burden to bear.  I felt unappreciated and angry that my efforts were unrecognized by my colleagues, my cast and my family and friends.  Everything seemed like work and there was no joy or satisfaction in anything I was doing.  But carrying on seemed like something I absolutely had to do.  I truly felt like there was no other choice.  I never questioned why I put myself through this kind of physical and psychological pain.  I had no idea what the end goal was, there was no huge dream I was working towards, but I felt that I just had to keep. going.

I’ve had a long time to think about it now, and I think I was grasping for a sense of control.  I craved control, actually.  Give me more responsibility at work.  Let me be the good Auntie who makes the Christmas traditions happen.  Let me be the actor who bravely goes on every night then coughs their lungs out every time they exit the stage.  But why did I want this control? Why did I DO this to myself?  I think it was because, as Mark Nepo points out in The Book of Awakening, “the wish for power really issues from a sense of powerlessness…the wish for more always issues from a place of lack.”  

 If I’m very honest with myself, I did and have felt that lack, for a long time. I did feel a huge amount of powerlessness in my job; my boss had gone on leave and my interim boss had gone on secondment, and I felt unprotected from the criticisms and (at times unreasonable) expectations of my client groups and unappreciated by my team for my contributions.  I certainly felt powerlessness in my personal life: I am almost 40, am not in love, have not been for a long time, and have no kids on the horizon with the doomsday biological clock ticking down to zero pretty darn quick.   I felt like I didn’t quite fit in anywhere – not at work, not in the theatre community, not in the burlesque community – I still hadn’t found my people.  And who hasn’t felt powerless in the face of some of the trials facing our world, in terms of climate change, war, economic collapse? 

Maintaining a tight grip of control over these small aspects of my life: work, performance, family - gave me purpose.   It filled up the holes without me having to think too much about what felt empty, or what work I would have to do to fill that emptiness.  It also required all of my attention and focus, so there was no time to dream about the future or, to be more precise, to worry about the lack of dreams I had for the future. Staying in control also allowed me to ignore scary things that were going on with my body: that I was retaining fluid, that I was more and more out of breath, that I couldn’t sleep, that my lungs felt like I was moving underwater, that my chest hurt.  Control was a distraction and a diversion from my real life.    

 So, now that I’ve painted this very dark, scary portrait of what life looked like before I got sick, let me tell you what happens when you let go of that control, or are forced to. 

If you are standing in your control tower of life all alone, when you give up control you suddenly find there are other people in that tower with you who are just as capable as you.  The empty seats begin to fill up.  You’re now a team of people, have probably always been one, rather than a solo mission.  I had to let family, friends, medical professionals and colleagues into my daily life in a way I hadn’t before, and found the tower’s not actually not too crowded, even with a whole bunch of us in here now. Things at work continue without me.  I’m missed but not irreplaceable, and regularly receive support and updates from colleagues.  Same with the show.  It went on, as shows must.  Family members who I rarely saw have become regular visitors and help with everyday tasks I used to do alone, friends who I haven’t kept in touch with came out of the woodwork with amazing displays of caring and support.  I used to go weeks without people being in my house; if I socialized, it wasn’t at home, and I never asked people here because coming to Richmond seemed like an imposition.  Now Currie, the most unsocial cat ever, eagerly runs to the door to greet visitors and sleeps soundly on her footstool in the living room during every visit.  I never used to let anyone see my house if it wasn’t magazine perfect, now friends take out the recycling and help me change my sheets and do dishes and cook food in my kitchen.  I don’t know how I could have felt alone with all these people around, who have been in the control tower with me the entire time.   It doesn’t feel crowded in here at all; in fact maybe there’s even room for more people, new people. 

Without the distraction of control, you begin to experience and focus on the current moment.  When you are not sure what will happen tomorrow, and can’t control how you will feel tomorrow, today starts looking pretty important.  I spend time playing with my makeup every morning rather than rushing to put something on before I run out the door.  I enjoy sitting at my dining room table to eat rather than standing up at my counter.  I spend hours doing (terrible) embroidery.  I go for slow walks around the park in front of my house.  And all of that feels incredibly fulfilling.  I feel happy, despite my illness, despite the side effects of my medications, even though I don’t know what will happen next week, next month, next year.  When you are not busy trying to gain or keep control, you create so much time for yourself to enjoy the present. 

And weirdly, as you begin to play in the peaceful sandbox of the present, you find space and time to start to build dreams again.  Big, fanciful dreams.  This time, without the terrorizing fear of what happens if you fail or are unable to control the outcome of whatever steps you take towards that dream.  You already let go of control once, and you not only survived, you thrived.  Once you cross that Rubicon, it’s hard to explain how free you are to someone still waiting nervously on the opposite bank.   It’s the act of dreaming itself, not the fulfillment of that dream, that brings happiness.  When nothing feels possible, everything feels possible.  You know now that the loss of control wasn’t a loss, but a gift.  Because you learn the only thing you can control, is you.  And there is no one and nothing that can ever stand in the way of that.

 I was pushed, but I really hope, for those of you who are struggling to let go of control, whose life is focused on gaining control, that you can hear me encouraging you to jump from across the river.  If you do, I promise you’ll make it here, to the other side.