I have a routine for bed time. I am not by nature an organized or regimented person, I don’t go to bed each night at the same time or wake up each morning with the sun. Each night and each morning are a careful balancing act of desires, expectations, and capabilities. Being “in-recovery” or “sick” or “with tumor” or whatever you want to call it has forced a routine on me. Each night after I wrangle the dogs I find myself exhausted and weary. I find the closest, softest clothes and put them on. In slow measured movements I go to the edge of my bed and sit facing the nightstand. I carefully put some organic wound cream on every mark along my arm left there from an IV. I rub what’s left into my hands and set about taking my vitamins. This vitamin for that, this one for headache, that one for inflammation. I don’t know if they are helping, but I take them each night. Then there is a careful balancing act as to what to take next. I see bottles of heavy duty pain killers starinng at me. They promise to dull the pain but leave a list of side effects that steal my spirit. Some nights if I know I have to get up early I cannot risk it so I take tylenol and hope for the best. I quietly send strength to my liver with every swallow of the tylenol. Some nights I break a Valium in half, thinking something is better than nothing. Other nights I take nothing at all, risking the unknown of what my body will do without the conscious and constant attention to its movements. I am slow and measured through the day, with night comes a recklessness that I cannot always trust. I often wake up in a ball, it’s 3 am and I am sweating, straining hard against myself to protect myself from the pain. Most nights I lay down on my non-deaf ear, trying hard to drown out the sounds of young, happy partiers outside in my building. I wrap my head in a pillowcase with an ice pack inside. I turn on Netflix on my iPad, and the light of whatever show I’ve seen a million times carries me off to sleep.
That’s my routine.
It’s not sexy. It’s not fun. And yet, there’s a comfort to it. There’s a comfort to knowing what to expect at my best and at my worst. I have a routine. It keeps me going. It makes me feel somehow in control, capable. It makes me know I am strong, independant, powerful, and managing my condition.
People keep asking me if my leak is better. I dodge the question and make jokes about the very real twist-top test tube the doctor gave me to collect fluid from my nose that I carry around in my bra. I feel like I am leaking and the doctors insist, perhaps more for their own comfort than mine, that they can’t have failed again. I feel a mix of regret and anger for not going back to Arizona for my surgeries. I feel irritated in the unknown of being told I am fine while my body screams otherwise. I tell myself it is the fear talking , I tell myself to stay present and to choose to believe that I am cured. I also then tell myself that that is stupid hooey and belief will only get you so far. So then I tell myself not to be a cynical asshole and around and around we go. And all of this exists not apart from the dramas of every day life, the pitfalls of career choices, interpersonal conflict, depression, joy, physical function and disfunction. So I look for comfort.
I find comfort in my routine.
Organic wound cream: check; vitamins to cure me: check; pills for pain: check; ice pack: check; repeat sitcoms: check; belief I am cured: sort of check, but really, NOPE.
I hope tonight, you all find comfort in something.
Peace and love,
Samira thank you for sharing your story. I am sending you love. You are so incredibly strong. It’s really beautiful
Thanks Kate! That means a lot to me! Hope you are well! Xo!