I woke up recently with the sudden realization that I have been in recovery from stem cell transplant for far more than a year. In that moment I wondered how far I would ever be able to get away from transplant.
I try to get far away from myself. From the pain that still sits in my chest. From the doubt that is always just under my breath.
Even so, here I am, by myself, in our new old house, with these damned thoughts.
This morning, I woke up at 5 a.m. Thoughts racing. Dreams fading. A weeks worth of home repair and health care "to dos" not too done. So I got up. Put on my sweats. Thought about giving them a wash while I took a leak. Made some coffee. Turned up the heat. Downloaded Birdman. Sprawled out on the couch and watched a movie.
Two hours later, as the sun finally rose and the credits rolled, I kissed Aura goodbye and she went to work. I did not. I'm living the dream. Doing my thing. 9:42 a.m. and I'm miles away from work. I honestly haven't a clue how far. I'm disabled. I shiver when I say it just like that. Matter-of-fact, I am disabled. It's not someone else. It's me.
I don't want to be here. I don't want to be disabled. I tell myself its great. I do what I want. I tell myself to get with it and get after it. Pep talks ensue. I take inventory. I don't commute. I don't have a boss or annoying coworkers. I don't have a cubicle. I don't even have to set an alarm. As I take my pills, I ignore the reality that the pile isn't getting smaller. As I think and write I tell myself I'm on sabbatical. As I work on the house I tell myself I'm learning a craft. When it feels good I tell myself how envious some must be of this time with myself. My heart swells. My eyes well. And I feel deep gratitude for how far I have come, and how much I have loved and been loved.
As suddenly as this feeling appears it dissipates. I'm alone -- in a still strange house -- drowning in silence. Even so, a victim of my own white noise. I've run out of steam and breath and my body feels like hell. I'm scrapping paint, but I'm really scrapping for my youth and clear memory, and I blame the chemo brain and that is so far from comforting. All the pep talks and the positivity, feel like a ploy for the unemployed. I'm stuck in some slob's nightmarish vision of the good life. How the hell is it 2015? Four long years ago I laid in my bed crying, in a puddle of my own sweat, scratching the fuck out of my entire body, and it feels like I'm still there.
So, when do you think you'll be ready to go back to work?
For quite some time now friends and family have been asking this question. I know why they ask. I know why others don't ask even though they want to. I know why I don't always feel comfortable answering. However, I feel like people close to me should ask, even though I kind of dread it. It's a tough, revealing moment. Most care and empathize. Some think work would be good for me. Some work so hard that they can't even imagine not working. Some just don't trust me. Many just don't know what to think.
They all hear me talking about working on our house. They see me slowly getting stronger. They witness the curls of chemotherapy fade from my hair. They get dinner and drinks with me in crowded places I used to avoid. We laugh at what no one else would understand. We tell stories that only we can share. As we shorten the vast space between, I see them pause for a moment -- I anticipate them pausing for a moment -- to think...
This is just like old times. He's still here. This is what I always did with Bret. I wonder if he's ready to go back to work. He seems pretty good. I should ask him. And they do.
So, when do you think you'll be ready to go back to work?
I try to answer, but the vast space between is once again palpable. I worry why they worry, and I realize that I feel guilty and defensive. I squirm for my footing and begrudgingly unfold the medical minutia, as I secretly wish all these loving, empathizing, prying, judging jerks I can't live without could just understand once and for all what Graft Versus Host Disease is! But they don't. And thankfully, they likely never will. And you have to give to get, and sharing is caring, and I want to believe all that. If only I could skip over the part where I ask myself the same question and go right to screaming in their concerned little faces, Wouldn't I like to know? Why can't you trust me? Isn't it obvious I'm not ready?
But I don't. And they listen. As they listen, I get more comfortable and so I go on. As I go on, they begin to share their own struggles, and so I listen. I am once again reminded that it is not just me. Slowly, I crawl back into my rash-covered skin, straighten my perpetually slumping back, breathe air into my rickety radiated lungs, unclench my shaky neuropathy and carpal tunnel ridden hands, run them through my Prednisone-thinned hair and instead of continuing to run from myself, I instead continue to find my footing.
I talk it out because it just isn't obvious where I am. I talk about the pain in my chest, and the shortness of breath I thought would be gone by now. I explain immune suppression, and the pills I can't believe I still need. I allude to doctors and insurance customer service representatives who don't give a shit. I paint a crude picture of the precarious, depressing space between chemotherapy and returning to work and how cancer forever changes the way you think about work and that work can never be the goal and I could go on and on about work and how I find plenty good work to do... but instead, because we've come this far, I admit to struggling to believe progress has actually been made. How I wonder whether I've learned one damn thing from all of this misery.
And I admit that no matter how long Aura and I talk about starting a family and no matter how ready we both feel to be parents, we can never out run our fear that I might die and leave her to raise a child on her own. It's too much. We can't even pretend to carry it all on our own.
This is when I realize in one simple conversation with a friend; we have absolutely crushed the vast space between. I feel human again, and I can be alone at home with a new ration of courage to live well whether or not I ever return to work. Courage I need right now, because here I am, once again waiting for the results of a CT Scan.