my therapist asked me a couple of months ago what i would want to be doing if i wasn’t sick. “if you can, just try to take the illness off the table. if you could do anything, what would it be?” i can’t remember what answer i surfaced with, maybe something about wanting to really kick into high gear on this documentary. then she repeated the question. again, i gave her some unsatisfying answer about finishing the house. the house? really? my undying dream is to finishing repairing some stingy, selfish, 91-year-old man’s moldy house? aaaaaand she asked me for a third time, “if you could pursue any dream, without limitations, what would you want?”

silence. i lowered my gaze to the ground, tipped my head to the side as if thoughts might fall out of my right ear, into my palm and i could just hand them over to her. “uhhh… i guess… i’d… just…” and then i stopped trying to give an answer and genuinely contemplated what she was really asking for- my dreams. and this question would be an easy one to answer if it was about anything else, but my dreams have been tempered, shaped, hacked at and stunted by these 15 years of dis/ease. 

“i don’t know,” i said. “i have no idea.” i stared at my feet, soles up on my thighs, sitting on the gym mat i favor when i’m in her office. she looked at me with kind eyes, waiting for me to catch up. “i can’t remember the last thing i dreamed of that i was able to manifest. i mean, not that i don’t finish anything or do anything, but… i guess i just stopped really dreaming. i have moments, moments that i want something, but it’s never without knowing that i might get sick. i might be too tired to even start, let alone follow through. everything that comes out of my mouth feels like bullshit because they never become my reality.” then i was quiet again. and let’s be real. i am never quiet. i don’t shut up. i have a filter but it’s nearly defenseless against the zillions of thoughts that come flying through my somewhat unhinged brain. at least 75% of photos of me feature either a derp face, mid-sentence or there’s food in my mouth. i’m probably trying (and failing) to look sexy in the other 25%. best guess.

i remember when the world felt wide-open, when vision, passion and conviction drove me through each day. i woke up like that. i had trouble falling asleep because my mind kept concocting ways to tackle what was on deck, how i was going to execute the next steps in whatever plan i had running. and i used to say things like, “i’m really glad that i had the opportunity to be this incredible kid because at least i got to do it in this lifetime.” i said this smiling and on the inside, aching. there’s a piece of me that feels like i got robbed, that knowing how my life feels when i set goals, achieve them and surpass them is like a cruel trick for someone whose general daily goal consists of getting out of bed to feed the dogs. twice. this is self-pity at its best, i know. but the truth is, i am afraid to want anything anymore because i’ve been beaten down by my inability to handle much more than the day-to-day of staying alive. 

to say i don’t dream would be a colossal lie. i do. but there’s a cruel cupid inside me that takes aim at those dreams with arrows poisoned with doubt and fear. some days, those fears are paralytic. take today, for example. my shoulders and right arm have been thickening, freezing and smarting something terrible. i’m getting tension headaches and migraines from the pressure in my upper body. my skin feels a lot like i went to a sadistic korean spa and had the top four layers shaved off by a rough towel and strong hands. i spend a lot of time sitting on my bed, feeling guilty for being unproductive. in my stacks of papers are dozens of handwritten lists of things to do. often, even if they’re months old, i couldn’t cross more than three things off of them. when i was teenager, i’d never have believed you if you told me that organizing a cupboard in the kitchen would be a big deal. i’d have thought you mad if you said i’d be afraid to take public transportation because my risk of infection would be so high. if you said that i would spend most of my time in front of a computer screen, reading research, watching videos of french bulldogs nurse baby tigers and lurking around social media, not posting because i didn’t want anyone to know that i was stalled out in my apartment, i’d have thought you were off your nut. i could never have imagined that life might look like this.

this is not self-pity. this is fact. on the real, i’m not always in this desolate emotional place. my feelings aren’t consistent about my value or contribution to society or community, but there’s a consistency to my actions that isn’t anything i’d ever dreamed of. i do believe i’ll get well. i believe there is a life, somewhere just out of sight, that’s fulfilling, less physically painful, that’s lived offline, that’s filled with laughter and playfulness. i dream that i will dream again, without the parameters of all the “i can’t do’s” and the sharp edges of dis/ease.

i know that this is not purgatory. i did not knowingly ask for any of this. there is no sin to be cleansed by way of my physical suffering. this is just a part of my path. but some of us don’t make it off this path. some of us cannot take another day in these crumbling bodies. it’s heartbreaking to lose gifted, beautiful, magical, compassionate and loving people to this disease, but it happens. and i understand it. my heart feels heavy and swollen for all of you who are suffering out there, feeling alone and loved at the same time, wondering if there is another side to all of this. i want to reach into your worlds, tell you that however you have to make it through this is okay, that maybe the other side is next week or maybe it’s really another lifetime. and even so, i want you here. i want to tell you that i don’t know what tomorrow looks like and that in spite of everything, i still believe there are days ahead where your body won’t pulse with each breath, your mind so aware of every ache and pain that you can’t think beyond the walls of your bedroom. if i could reach out and give you the hope i hold, i would. 

whether or not you know it, there’s an army of lovers who have your back. i got your back, even when mine is up against a wall, even when i am too scattered and tired to return your emails. and if you are suffering and think you cannot take anymore, please pick up the phone. please call someone who loves you. please tell them because maybe you’re their strength and without you, they don’t know how to face these realities. maybe they can help you. maybe they can’t. but know that you are not alone. you can’t be. someone carries you in their heart, even when you can’t feel them with you. someone is dreaming of a life where you’re not suffering anymore. 

to my friends who are mourning the loss of their friend, never stop dreaming, even when it hurts. 

rest in power, amazon sister. 

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