The Agony Archive: 10 years
Archive of collected poems, writings and photographs from my journey so with hEDS. Published on the 10th anniversary of my first dislocation.
Daily Survival Kit: Photographs depicting things needed to get me through a day including One day's worth of medications (plus the week's supply in pill boxes), mobility aids, technological aids and music.
Extract from 'Sometimes I Can't Walk' 2016: This is the earliest instance of writing regarding my condition. I had been searching for answers for many years and had received no help from doctors being passed from different hospitals multiple times. I was 17 at the time. Photograph 2022: This photograph details my feelings 3 weeks into ISC and the start of a long arduous journey with Recurrent catheter induced Infection.
Graduation Photograph 2021: Picture from my Graduation from the University of Bolton. But also a symbol of perseverance through my entire educational journey after being encouraged to drop out of education by doctors in 2015 due to my worsening condition (before even completing my GCSEs). I now hold an MA with Merit. Photograph from rehearsals 2019: When I was consistently facilitating physical/movement theatre classes and was working towards taking negative experiences of physical theatre and creating a practice that worked for people with differing abilities. Photograph from 2019: At university, miles away from home having to advocate for myself to remain in the course and prove that I can define my abilities to people who only saw me as unable.
My First Jaw Lock/Dislocation (2017): Prior to going to university, my hips were the only part of my body that dislocated, but through my first year of university first my shoulders, then wrists, then my jaw became involved. What started as Jaw pain became a complete lock for 2 weeks. Something that would happen multiple times throughout the following years. My first serious PoTS Flare (2019): My first instance of collapsing in class and having to manage PoTS Symptoms when I was yet to be diagnosed and medicated, something which has dramatically improved my functionality. I was 19.
Post from 5th anniversary: I was officially diagnosed with EDS in 2018 after 5 years of misdiagnosis and medical gaslighting. This diagnosis was a relief to know that I was not simply crazy. But after a flare-up in the summer of 2018 left me hospitalised twice, I understood that even with diagnosis, treatment and support for this condition are severely lacking. Photograph from Initial hospitalisation in the summer of 2018: In this photo I was unable to walk due to the pain throughout my entire body, I had been bed-bound for almost a month and for the week before this photo, I had not even left my bed to use the bathroom. I was 19 years old.
List of Medications taken in the hospital: During the Summer of 2018, I had endured my worst flare-up and had been hospitalised already the week before this. I was still studying and had been in the middle of exam week, upon trying to make it to class I had taken more than an hour to get from my flat to the gate of the accommodation and ended up falling in front of the university resulting in re-hospitalisation. Photograph of Dilated Pupils: After having tried to use different pain medications with severe side effects I was moved onto Duloxitine. Unfortunately, I still experienced side effects, and worse than this I was also trapped in the lockdown and was told to keep taking it. After 12 weeks I had lost considerable amounts of weight due to nausea and dizziness and was moved onto something else when I returned home.
Photograph of TYPT Cohort 2023: Before I had gotten sick I was an avid performer who loved to dance and move and was on track to pursue this love further. Unfortunately, when my symptoms began, it quickly became clear this would not be possible. For years, I battled against doctors, my own body, and teachers who all tried to define me and tried my best to prove myself capable of greatness. In the summer of 2023, I was very lucky to have been able to complete TYPT 23 an intensely physical programme and show and push myself past any limitations that had been set for me. I have, through this, found new capabilities, learned more than I ever could have imagined about my body and have become so much closer to who it is I always wanted to be. Photo of D E S C E N T : DESCENT was a show that I created during my undergraduate degree. I was set on creating a solo show that pushed the boundaries. I spent a lot of time, fighting to be taken seriously and to be able to fully explore the show without the limitations that others placed on me. It took me going to study for my postgraduate degree to really develop this show into what it is today. And two years post-study the show has been performed multiple times. Through doing this work, I not only tell a very important story, I prove to myself that other people's perceptions will never stop me from achieving my goals.
Words from 2021: Having a chronic illness means that there are many periods of your life in which you don't feel your best. Despite this though, society always wants the best and you become trapped in cycles of trying to be 'well' all the time and inevitably this makes you worse. Photo from Second hospitalisation in a week (2019): After falling in front of the university the ambulance came and tried to administer pain relief in order to let me stay, however, despite trying 8/9 times they could not get a line in. They took me to the hospital where they tried a further 10 times until they finally got a line into the side of my wrist.
Post from 2022 after falling onto my neck: I had fallen a few times in the years prior, but in this instance I fell from my bed onto my head/neck, my entire body falling over my neck. Had I not had EDS I would have broken my neck, but left with some nerve damage instead. This was an instance of feeling grateful for a condition that caused me a lot of pain. Photo of my shoulder from 2018: After my shoulders began dislocating, heating patches became a saviour. They were the things that could provide a lot of relief. But EDS means that skin is soft and for me, that meant that after keeping a heating patch on for a full day, I removed it and found that most of the skin was gone, and the next day blisters had formed.
Poetry from Lockdown: I had often, since the start of my illness, been isolated, and the forced isolation of Lockdown made me confront a lot of thoughts that I had been having for a long time. The biggest being that pain had almost transformed into my closest companion and that it was one of the only things I could count on in times of uncertainty. This poem was a way for me to explore this. A photo from 2023: Currently, I have had one of my most successful years, filled with incredible achievements and successes, but that doesn't stop the inevitable, sobering flare-ups that are now confined to my internal world. Existing in a world where you are perceived as unstoppable, means that when you have to stop, you have to do it in private so that you don't fracture the image you built for yourself...
Despite everything, I am beyond grateful and humbled by the incredible people who have gotten to know me over the past 10 years, who have made space for me and who have supported me in any way. Here's to 10 More Years.