The Weekend the Stars Grew Brighter

28/07/2020
Chloe Coules

Chloe reflects on a beautiful evening which was the start of a complicated relationship with her invisible disability

The stars were painfully beautiful that evening. It was already dark, and they shone brightly without a cloud in the sky as I walked up to the party. It was in a boathouse overlooking Henley River, a beautiful old building with exposed beams and a porch that melded into the riverbank. It was quiet for miles around, except for muffled music and laughter coming from inside.

I looked on as a group of my friends were sat in a circle playing truth or dare, squealing as someone said something scandalous. I had always been more reserved than them, but I was feeling invincible that night as I danced and laughed.

My school experience had never lived up to my expectations, but this weekend was like something out of a movie. Fairy lights adorned the walls and reflected in the water, as teenagers drank out of red cups and sang along to Arctic Monkeys on the speakers. I looked on as a group of my friends were sat in a circle playing truth or dare, squealing as someone said something scandalous. I had always been more reserved than them, but I was feeling invincible that night as I danced and laughed.

When the sweaty air on the dancefloor became suffocating, I ventured away from the party, walking along the river. The buzz in the air dissipated and was replaced by an inviting September breeze, pulling me further away from the now-forgotten scene unfolding inside.

Suddenly I felt dizzy, so I lay down to watch the stars. I was transfixed by them; I had never seen the sky look so bright before in my life and it took my breath away. As I lay in the soothing grass, they got brighter and brighter, until they felt like tiny anchors piercing into my eyes and weighing my body down.

I lay down to watch the stars. I was transfixed by them; I had never seen the sky look so bright before in my life and it took my breath away.

Their beauty turned into something more sinister; I had never experienced pain quite like it. It surpassed screaming or crying, I was powerless to it. I knew something was wrong, but the pain was all consuming, so I was unable to alert anyone to what was going on in my brain. I don’t know how long I lay there. I was stargazing to anyone else, but inside my head was exploding.

It took me a long time to tell anyone what was going on. Pain is a very isolating debilitation: I didn’t know how to put into words something that I didn’t understand and that no one else could see. It frustrated me that it wasn’t obvious to an onlooker, it felt like it should be.

The pain was all consuming, so I was unable to alert anyone to what was going on in my brain. I don’t know how long I lay there.

That weekend was the start of a complicated relationship with my invisible disability: my first serious migraine attack.

Over the years I have grown familiar with my condition and it has become a part of who I am. Most days I can ignore the unexplainable pain; some days I feel like I did before that night. Other days are harder, spent isolated from the world and unable to cope with any level of stimulation.

I have learnt how to ask for help and explain what is going on in my body. I have also learnt how not to rely on this help, and how needing it can be a strain on my relationships. I have learnt that however isolating my pain is, it does not only affect me. I have watched my loved ones mourn the life I lost to my condition; I have lashed out like a wounded animal when the pain feels too out of my control. I am not the only one it hurts.

Over the years I have grown familiar with my condition and it has become a part of who I am. Most days I can ignore the unexplainable pain; some days I feel like I did before that night.

I have learnt to be kind to my body, and thank it for the pain, which only exists to warn me. It is not my body’s fault that it finds threats in the smallest of things and does not know how to cope with change. I have learnt to react nonjudgmentally to my process of coping, even if that involves eating my bodyweight in crisps and watching trashy films on really quiet. Some days being well is meditating, exercising and eating cleanly; other days it is looking after myself through junk food and reality tv.

I have learnt to take the good days when I get them, and not put unnecessary pressure on the important days, whether it be birthdays, exams or job interviews, because the more pressure I put on a day to be pain-free the less likely it is that it will be. I have learnt that even in agony I can celebrate, I can succeed, I can live.

I have learnt that no one has control over their body, and I am reminded of this every time I look up at the stars, which will never be the same again.

Does Chloe’s experience resound with you? Let us know in the comments.