i think one day i will collapse

When I was a kid, a geneticist told me that she could tell I had Ehlers-Danlos Syndrome just by shaking my hands and looking into my eyes. My hand bones were like putty in her hands and the whites of my eyes were tinted blue. Obviously, she talked to me more and we had a real discussion and came to a more solid conclusion, but it speaks volumes that she could see it right off the bat.

Ehlers-Danlos Syndrome is a genetic connective tissue disorder that runs in my family. It can take many different forms depending on severity and what parts of the body are most affected. For me, it seems to mainly impact my joints and skin.

My symptoms, for pretty much all of my childhood, were tamer. Stretchy skin, hyperextension (a lot in my elbows, which I loved to show off), slow healing wounds, easily bruised skin, and, at worst, leg pains that would keep me up at night. These leg pains were some I could never get used to no matter how many times I had them. While the idea of it being caused by my genetic condition came up a few times, most of the time we would decide they were from growing, walking, or not drinking enough water.

Despite knowing I had a genetic condition, we never addressed it as a disability. It didn’t negatively affect me enough to present itself as such, I suppose. Maybe a lack of education, maybe different assumptions, maybe sugarcoating. The reason isn’t clear. But, regardless, I was never told I had a disability so I never treated myself as such. In my eyes and the eyes of everyone who knew of my condition, I was just fine.

As I write this piece, I am exhausted from lugging around the flesh and bone that erode my joints. I feel pain and stiffness on both sides of my spine. Various joints in my left hand and arm are sore for reasons I cannot pinpoint. I feel a physical and mental defeat from a day of average retail work and some extra, but minimal, physical activity afterwards that would leave an able-bodied person to feel fine. I had plans to meal prep for tomorrow and even though I could still stand and make myself something, the idea feels like torture. The pain, while not unbearable, is ever present and looming.

In the past few years, I have felt my body grow more and more fragile. Sitting on the floor, getting up from sitting on the floor, kneeling, lifting, and running all feel like things I have to mentally prepare for. They have grown harder and harder to do comfortably. Hell, I don’t even know when the last time I ran was. The arches of my feet feel like they collapse to the earth after being on them for too long. Random bouts of hip pain shoot up my thigh as I work. At any given moment, a part of my body can just suddenly feel like shit. 

And yet, I can still do a lot. Walking, staying on my feet for longer periods of time at work, lift certain things, and even keep going without my body completely giving out. I do not push myself to great extremes, but more than what I think I can usually handle. For that, I am grateful. I still have it in my head that I am not disabled. Despite how horrible my body feels, I never accustomed myself to the identity and made peace with it, so saying it feels like I am being overly dramatic to the people who have always assumed I am just fine. I don’t want them to see me as weak. I don’t know how to see myself as disabled. And yet, I can still keep going.

As I said, I do not speak on my pain. I see the way those around me sneakily judge the disabled. I see how they doubt their true pains and struggles. It is hard to believe that the people close to me may not share those same biases. There have been times when I speak up a little about how I feel and it is brushed off. Much like my childhood leg pain, it is watered down to something digestible for others. Something that doesn’t haunt me each day. Something that they feel I can sleep off or heal with continued movement. I do not say much anymore. I know deep down I am disabled, but others cannot even grasp the idea of it.

With that said, I think one day I will collapse.

One day, I will feel my legs start to finally give. They’ll shake under the weight of my whole self and tumble to the floor. I will hit the ground and feel what surface I have finally decided to crumble upon. Will it be the hard, cold floors of my work? Will I feel the grass touch my face and get dirt in my eyes? I think one day I will collapse and be forced out of my denial. I will feel shame and grief in having to come to terms with something I have denied myself of so long and a body that no longer can do what it has always done. 

I think one day I will collapse. When I do, however, I will also feel relief. My pain is not visible and it feels like a burden to speak it to existence. But if I hit the ground out of a physical refusal to go on, the people who did not see that I was disabled this whole time will finally see. I will feel catharsis when I look up at their concerned faces, knowing that they can finally see the culmination of my body’s baggage. They will see that my loose joints do, in fact, make it harder for me to carry my own body. They will see that it really is hard for me to do all of the things I struggle to do. I will finally be able to tell them that I am in pain and cannot push myself anymore without shame. I would tell them “I told you so,” but everything was left unsaid. Whatever was said wasn’t taken as seriously as it should have been. When I collapse, they will see the mess of body parts held together by chewing gum that has been before them this whole time. 

I think one day I will dislocate something. I will scream in agony at the removal of bone from socket. I will likely have to go to the hospital to put it back in place. Once better, I will look at people with eyes that have held back more than they’d like to admit and they will be forced to see me as disabled. It is a sweet revenge, to writhe in pain before someone and feel them finally see it all; years of my life rushing over them in an instant.

I have started to accept my existence as someone who is disabled. I can tell my body is starting to rust slowly and that one day, I will likely be very different than I am now physically. 

That is more than they’d ever know. I think one day I will collapse and show them.

About The Author

Fern Manetta is not technically a writer, but she sure loves to do it, so she likes to say she is. She has frequently written for Loco Mag in the past and writes anything from funny stuff to more serious pieces. She has bad joints and has an even worse attention span.