i definitely have had something on my mind that i wanted to discuss. healthcare.
as you may or may not know, i have been living with crohn's disease for a decade now and have been on quite a selection of medications. i've come a long way, baby.
for my performance, i tapped into my experimental theatre and performance art training to develop a multi-media personal narrative through autoethnographic research methods.
the piece was in five movements, each separated by taking four pentasa pills that i used to take throughout the day...only this time the pills were emptied of their contents now that i no longer take them.
the piece began with me entering my bedroom on the telephone, apologizing to a friend for leaving their party before they had arrived because of crohn's related issues (something i've done quite frequently). i then took my first dose of pills.
the second movement of the piece was a video that played behind me. the video was a recorded phone conversation i had with a telephone operator who worked for a health insurance company that provided my latest medication, humira. the conversation was about how i would soon be without health insurance, why the medication costs 1500-1800 dollars a month, and if anyone was able to stop taking the drug. she of course was doing her job and explained that no research had been done on long term patients that stopped taking the medication, that their plan could help provide cheaper costs for the injection therapies for a year and that i should talk to my doctor about what to do (a thought i never had before). all the while i stood in front of the video footage and removed my clothes, revealing a hospital gown underneath my layers and put a surgical mask over my mouth. i then took another dose of medication.
the third movement started with me removing my mask and speaking in a cheerful tone while reenacting a humira commercial, indicating the risk factors (hospitalization, infections, death) of using the product. i also warned that these risks were amplified when taking other medications like the one i have been taking with it for the past year and a half, mercaptopurine. i then take mercaptopurine and tell the audience to call their doctor right away if they have an infection or show any sign of an infection as humira greatly reduces their immune system and can put you in harms way. i then dump out my old humira pens from a bag and take another dose of pentasa, ending the third movement.
the fourth movement is an actual monologue i recorded from when i went to a doctor's office to elaborate on my troubles. with my legs swinging on the high table, i told them about the varied effects ive felt from the humira and medications and how i have felt cheated from starting a trial of humira to now needing it to survive over a year and a half later. i then picked up a painting i had done which when i get angry at my pills one day and used it to playfully describe the way my stomach felt to the audience.
i then took another dose of pills and ended the fourth movement.the fifth and final movement was by far the best way to end this piece. to the tune of gold panda's ironically titled "quitter's raga"
i stared directly into the audience and gave myself an injection of humira, a personal triumph as i had always been reluctant to let others watch. it was painful, it was violent and it was a moment i gather they would rather not have seen. they were able to understand the same angry and helpless thoughts that i get each time i reach for the latest injection. pure poetry. the lights then went off and i layed in bed, ending the fifth and final movement.
it was a sight to be seen and an incredible personal victory. it was nice to return to my performance roots, but it was even better to end the semester by airing out my personal frustrations to an audience.
love and loyalty.
No comments:
Post a Comment