By Ally (she/her), 19
You can listen to it here: https://open.spotify.com/episode/2AoKwfGWkohH7q0W8bocFV?si=e967735cce1f4928
I think that a year ago, if you had asked what I had lost and gained I would have struggled to think of what I had gained, and two years ago I would wonder why you were even asking. Now though, I feel able to think about the gains and see that they truly are things that I have been lucky to gain. That is not just to like totally positivity-wash everything that has and is happening though, as I say the past two- and a-bit years of epilepsy have been hard, and the losses still very much there. Losing trust in my body, never sure if it might betray me and I might fall or have a seizure or a migraine. Losing independence and developing a dependence on family and friends. Losing confidence in myself. Losing memories. Losing time, so much time, spent recovering from seizures or pacing to stop seizures. Losing the ability to make plans with certainty, always conscious that a seizure would throw everything off. Losing the ability to be spontaneous, tied down to medication and the importance of pacing. And it goes on. The losses can feel overwhelming. I think now though I am lucky to be in a position to look at it and very much be able to see both the bad and the good.
The losses aren’t forever losses. Even with something like exercise, I lost a lot of confidence with going out running, but even just this week I have been getting back to doing some of the exercise that I had so missed. Things are always changing and I think sometimes I think of this as a negative, the lack of certainty, as I don’t really ever know what tomorrow, or even today is going to be like because a seizure out of the blue can totally knock of all my plans, but actually it kind of is a positive because it means that whilst just now I am not able to drive, for run by myself, it might not always be like that. The losses are maybe just quite temporary.
The things I have gained, on the other hand, feel much more permanent. Epilepsy and all the experiences that have come with it, including the losses, have changed things about me. I think they have pushed me to appreciate things I once took for granted; maybe it takes being cooped up in a hospital room on days when it is gloriously sunny and everyone else is outside with their friends, to truly appreciate it when it is you that is outside with friends too. I think you get a kind of awe with the world that you feel so acutely when you leave hospital and it is breathing outside airs, seeing coloured cars and trees and people running and moving, things you tend not to notice but when you do you can’t help but be amazed. When I am just at home too though, the feelings of small victories, wandering around the house, making cups of tea for friends, or taking a long shower.
Above all, I think it has really made me aware of how much I appreciate people. People that are family, people that are friends, and people I probably will never see again. The trust I have gained in strangers has surprised me. In situations where I have been vulnerable it has been the kindness of complete strangers that has always pulled through. Wonderful hospital staff whose kindness never ceases to amaze me. Epilepsy has put me in situations that have allowed me to see this. The feeling of not being safe in myself and my body has been counterbalanced by a sense of safety within the world and the places I go, knowing that people are good.
This feeling of safety is also created in a large part by the support of the people who I am lucky enough to call my family and friends. I have always appreciated them, but things have been harder for them and harder for me, and oh my gosh have they risen. I can’t quite put into words the appreciation I have gained. My mum, dad, and younger sister are always believing in my abilities, and who I know I only need ask and they will be there. My friends who have become incredible informed advocates for epilepsy. My friends who never tell me it would be easier if I didn’t come on this trip with them, even though I know it would be. My Aunty and Uncle who always drive over, no matter the time, if they hear I am in A and E. My friends who listen to me having the same wobbles and complaints over and over again, and never complain. I could keep talking about this forever, because I really have gained a love and appreciation for them that is so deep.
I feel that the losses will keep coming, but I know that so will the things I gain, and this balance feels reassuring and makes me hopeful for what is to come.
(Originally published 26/03/20)