Control. Janet Jackson sang about it, and it's something we all take myriad steps to try and carefully orchestrate in our lives. Control over our bank account, our job, our appearance…and when things are going well, it's something that’s easy to take for granted.
I’ve been thinking a lot about it the last few days because I am very most definitely starting to lose my hair. You can’t really tell by looking yet, but the signs are there…on my pillow, in the tub after a bath or -- my personal favorite -- covering my hands every time I run my fingers through it (which used to be a lot, but I’m quickly learning to develop alternate nervous tics. I’d like to keep what remains up there for as long as possible.)
My curls have pretty much defined me for the past two decades, but cutting them was surprisingly less traumatic than I thought. I guess finding out you have cancer puts things like a bad hair day, in perspective. That said, I’m getting used to this cute little pixie cut and really, who wants to be bald? Most guys stress about losing their hair (see: Rogaine, also “comb over.”) Being a bald woman, well let’s just say getting used to the idea is…an adjustment.
So here I am, thinking I had come to grips with the whole hair thing, and I'm realizing that having cancer is just like experiencing grief – and I’m moving through the stages. Right now it feels like there aren’t enough cute scarves in the world to make this better. Then again, six months ago I couldn’t imagine having short hair, so I guess that’s how it works – it feels a scary in the abstract, but then you actually lose control, and you can either embrace or retreat. There is no standing still.
This whole hair discussion reminds me of a man I saw at chemo last week. Chemo happens in a large room set up with 12 or so La-Z-Boy style chairs in a semi-circle, each with a patient hooked up to an IV dripping his or her own particular mix of cocktail. Let’s just say there’s not a lot of privacy, so you can both make friends and be all up in everyone else’s business. (This violates both HIPAA laws, and the sensibilities of my sister Annie who, as a Benefits Manager, is all about HIPAA laws.) Anyway I was sitting with my dad, chatting and laughing and attempting to use my janky grasp of ASL to try and communicate with the deaf woman next to me, when I heard this man across from me say in a very plaintive and somewhat angry voice "Do not stick me with that needle. Find another way. I’ve been stuck six times already this week and I'm sick of it. I do NOT want to be stuck anymore.”
I looked up at him. His eyes betrayed a mix of weariness, defeat and stone cold fear. He reminded me of a wounded bear nursing a lame paw and threatening to swat anyone who got too close. At first I felt sorry for him, this grown, 50-something year-old man pushing back like a child against something so much bigger than him. “You just gotta roll with it,” I thought, perhaps a bit too smugly. And then I was hit with a tough realization: I’m only two treatments in, and already I dread going to chemo. How am I going to feel in December?
It’s true I come from more of the, “well this might not be fun, but we’ll just make the best of it" school, but here was a very real reminder that cancer and chemo are scary shit. Under normal circumstances, getting stuck over and over again with no real say in the matter, would constitute torture. And if you experienced unexpected and extreme shooting pain up the arm (thanks chemo drugs!) under normal circumstances, you’d head to the nearest ER. But these are not normal circumstances. We have a new "normal." And most of the time, it sucks.
Later at that same chemo session, I was absentmindedly twisting my hair into little curls when the nurse said "oh, you're not a puller, are you?" - (I'm not.) Six months ago I would have had no idea what she meant. But when she asked, I knew. I had talked to other friends who had been through my same chemo who told me that, rather than wait for the slow, tortuous process of watching their fall out little by little, they would pull it out in clumps. Sounds a little disturbing, right? Then again you're probably not losing your hair. I'm guessing that a few years ago, it would have sounded disturbing to my friends, too. But then it became about wresting a tiny bit of control from an inherently insane process.
So mostly this is all a stark reminder that, at its core, the idea that any of us really has control is an illusion. Those people who are dealing with severe illness, trauma or any of the other “things that happen while you’re making other plans” are the like the canaries in the coal mine of life. And embracing loss of control while you’re still trucking along the mine shaft, blissfully ignorant, makes the inevitable curveball a little easier to take. So while I still feel empathy for that guy, I also have hope. I believe in my heart that years of practicing how to embrace abandon have prepared me for this moment.
I also know that I learned from the best: my momma.
It doesn’t get anymore out of control than not being able to walk, or relying on a complete stranger to help you do things like shower. Or go to the bathroom. And yet here is a woman who, thanks to the ravages of MS, was down to use of only one of four limbs (her right arm, to be exact) and went -- BY HERSELF -- to Dubai. Which is in the Middle East. Sure it’s the Vegas of the Middle East but still…by herself. For a whole week. Did I mention she went by herself?
But then again, she was embracing challenges as far back as I can remember. Like the time when I was five and Annie was four and an epic Michigan blizzard was about to pound Ann Arbor, and we had literally NO food. None. The car was broken down and we had food stamp vouchers but no way to use them and we were about to be trapped inside for days on end. Instead of doing what would have made total sense under those circumstances (curling up in a ball in the corner and crying hysterically,) she bundled us up in snowsuits, walked us to the corner and proceeded to hitchhike. I remember thinking we were violating every rule she had ever taught us about going in cars with strangers. I’m guessing she was thinking about things like our basic survival. Either way, she made is seem like just another adventure. She told the first creepy looking guy who pulled over to buzz off (at which point he called her a not so nice name) and we went with the second car that stopped – another single mom with her kids also running to the grocery store to stock up ahead of the storm.
So that’s all to say, it wasn't the illness that made her strong – it was her spirit. And honing that spirit was probably what saved her sanity and sense of humor when the MS took almost everything else.
As I say, I learned from the best, so I named this post after a really great poem by Rilke (the same dude who inspired the dragon slaying princess imagery) called The Man Watching that brings me comfort when I think I can’t handle one more thing. It also really encapsulates the way my mom lived her life: head on, with confident abandon, learning how to enjoy the ride - and when to just hang on tight.
I’ve been thinking a lot about it the last few days because I am very most definitely starting to lose my hair. You can’t really tell by looking yet, but the signs are there…on my pillow, in the tub after a bath or -- my personal favorite -- covering my hands every time I run my fingers through it (which used to be a lot, but I’m quickly learning to develop alternate nervous tics. I’d like to keep what remains up there for as long as possible.)
My curls have pretty much defined me for the past two decades, but cutting them was surprisingly less traumatic than I thought. I guess finding out you have cancer puts things like a bad hair day, in perspective. That said, I’m getting used to this cute little pixie cut and really, who wants to be bald? Most guys stress about losing their hair (see: Rogaine, also “comb over.”) Being a bald woman, well let’s just say getting used to the idea is…an adjustment.
So here I am, thinking I had come to grips with the whole hair thing, and I'm realizing that having cancer is just like experiencing grief – and I’m moving through the stages. Right now it feels like there aren’t enough cute scarves in the world to make this better. Then again, six months ago I couldn’t imagine having short hair, so I guess that’s how it works – it feels a scary in the abstract, but then you actually lose control, and you can either embrace or retreat. There is no standing still.
This whole hair discussion reminds me of a man I saw at chemo last week. Chemo happens in a large room set up with 12 or so La-Z-Boy style chairs in a semi-circle, each with a patient hooked up to an IV dripping his or her own particular mix of cocktail. Let’s just say there’s not a lot of privacy, so you can both make friends and be all up in everyone else’s business. (This violates both HIPAA laws, and the sensibilities of my sister Annie who, as a Benefits Manager, is all about HIPAA laws.) Anyway I was sitting with my dad, chatting and laughing and attempting to use my janky grasp of ASL to try and communicate with the deaf woman next to me, when I heard this man across from me say in a very plaintive and somewhat angry voice "Do not stick me with that needle. Find another way. I’ve been stuck six times already this week and I'm sick of it. I do NOT want to be stuck anymore.”
I looked up at him. His eyes betrayed a mix of weariness, defeat and stone cold fear. He reminded me of a wounded bear nursing a lame paw and threatening to swat anyone who got too close. At first I felt sorry for him, this grown, 50-something year-old man pushing back like a child against something so much bigger than him. “You just gotta roll with it,” I thought, perhaps a bit too smugly. And then I was hit with a tough realization: I’m only two treatments in, and already I dread going to chemo. How am I going to feel in December?
It’s true I come from more of the, “well this might not be fun, but we’ll just make the best of it" school, but here was a very real reminder that cancer and chemo are scary shit. Under normal circumstances, getting stuck over and over again with no real say in the matter, would constitute torture. And if you experienced unexpected and extreme shooting pain up the arm (thanks chemo drugs!) under normal circumstances, you’d head to the nearest ER. But these are not normal circumstances. We have a new "normal." And most of the time, it sucks.
Later at that same chemo session, I was absentmindedly twisting my hair into little curls when the nurse said "oh, you're not a puller, are you?" - (I'm not.) Six months ago I would have had no idea what she meant. But when she asked, I knew. I had talked to other friends who had been through my same chemo who told me that, rather than wait for the slow, tortuous process of watching their fall out little by little, they would pull it out in clumps. Sounds a little disturbing, right? Then again you're probably not losing your hair. I'm guessing that a few years ago, it would have sounded disturbing to my friends, too. But then it became about wresting a tiny bit of control from an inherently insane process.
So mostly this is all a stark reminder that, at its core, the idea that any of us really has control is an illusion. Those people who are dealing with severe illness, trauma or any of the other “things that happen while you’re making other plans” are the like the canaries in the coal mine of life. And embracing loss of control while you’re still trucking along the mine shaft, blissfully ignorant, makes the inevitable curveball a little easier to take. So while I still feel empathy for that guy, I also have hope. I believe in my heart that years of practicing how to embrace abandon have prepared me for this moment.
I also know that I learned from the best: my momma.
It doesn’t get anymore out of control than not being able to walk, or relying on a complete stranger to help you do things like shower. Or go to the bathroom. And yet here is a woman who, thanks to the ravages of MS, was down to use of only one of four limbs (her right arm, to be exact) and went -- BY HERSELF -- to Dubai. Which is in the Middle East. Sure it’s the Vegas of the Middle East but still…by herself. For a whole week. Did I mention she went by herself?
But then again, she was embracing challenges as far back as I can remember. Like the time when I was five and Annie was four and an epic Michigan blizzard was about to pound Ann Arbor, and we had literally NO food. None. The car was broken down and we had food stamp vouchers but no way to use them and we were about to be trapped inside for days on end. Instead of doing what would have made total sense under those circumstances (curling up in a ball in the corner and crying hysterically,) she bundled us up in snowsuits, walked us to the corner and proceeded to hitchhike. I remember thinking we were violating every rule she had ever taught us about going in cars with strangers. I’m guessing she was thinking about things like our basic survival. Either way, she made is seem like just another adventure. She told the first creepy looking guy who pulled over to buzz off (at which point he called her a not so nice name) and we went with the second car that stopped – another single mom with her kids also running to the grocery store to stock up ahead of the storm.
So that’s all to say, it wasn't the illness that made her strong – it was her spirit. And honing that spirit was probably what saved her sanity and sense of humor when the MS took almost everything else.
As I say, I learned from the best, so I named this post after a really great poem by Rilke (the same dude who inspired the dragon slaying princess imagery) called The Man Watching that brings me comfort when I think I can’t handle one more thing. It also really encapsulates the way my mom lived her life: head on, with confident abandon, learning how to enjoy the ride - and when to just hang on tight.
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