My mother used to talk about people who were on disability as though they were liars, fakers, leeches on the system. A real woman works through the pain. A real woman keeps going to work, takes care of the men when they’re sick – my father was “such a baby” when he was sick with anything. She had no patience for anyone whose body wasn’t made of steel. She didn’t mean to invalidate future-me. I internalized these messages though, and I bear a growing resentment against this body. This body makes me feel like I am failing my mother. I feel as though I’m failing at the intrinsic core of womanhood – enduring. She would be horrified to know that this was my takeaway from those lessons. Those lessons were only meant to impart a strong work-ethic and resilience. Maybe if I were healthy, that would be exactly the message I would’ve come away with. Maybe if my body was a well-oiled machine, I would only believe that it’s my duty to struggle through normal illness, to not rest for more than a day, no matter how sick I was.
I recognize this for what it is. I know that I would never look down on any other person who applied for disability, who is disabled, whether that disability is visible or invisible. I would never invalidate the experiences of another person that way, and I do not live their life. I don’t know what they go through, just as they don’t know me.
I know the shape of my pain. My pain is a chasm, it’s as though you’re standing at a precipice, and it looks like you could leap and you’d make it to the other side. Looks are deceptive. If I jump, I fall. I fall hard. I go in a short burst and then pay for it for weeks. My pelvic floor is a knot that constricts around my organs. I rip myself open from the inside, cause myself to bleed and tear. It’s a trauma after-effect, I know this. And no amount of therapy will make it go away – these muscles live this life now. When I did physical therapy to help to manage this, my resting baseline measured by machine is higher than the most tense an average person can squeeze their muscles. This tension causes deep pain at all times. It’s better if I am in a hot bath, and so I am typically in a hot bath for three hours per day, on average. Some days I abbreviate it to two hours. Some days I’m in a three hour bath twice in a single day. On no day can I sit for more than short periods. If I am not in the tub, I am typically moving around or lying on my stomach, typing on the keyboard in front of me, or working on art projects. I have modalities at home that allow me to change positions regularly to minimize adding tension on my muscles.
I’ve had to leave three jobs because this pain won’t allow me to live a normal life.
If you’re reading this and you know me personally, if we’ve volunteered together, for example, this will surprise you. This is because I can generally time my body’s needs so I can get a good two hour block every day that I’m surprisingly functional. I teach religious school Sunday mornings, and I get about three hours of teaching in. I do this by making sure I don’t actually have a bowel movement until I get home. The moment I have a bowel movement in any given day, my day is over. I need to bathe immediately afterwards to release the muscle pain, and because my surgical site from the operation I had to slice my pelvic floor muscle open to try to release the pain keeps getting infected, months later. I have a brand new fissure now, in a different location, so two areas now are prone to infection, bleeding and pain.
I don’t want to expose these intimate secrets to random strangers. I’m starting with writing this because it’s important for me to articulate them, to practice, because soon I’ll be involving a lawyer to help ensure I get disability for this condition. It’s the right thing to do for my family. I would be making a good salary – I’m educated, articulate, and everywhere I’ve ever worked, I’m loved and valued. But I am not reliable. I can’t work even 20 hours a week reliably. I can freelance from home, write and edit. The vast majority of my writing and editing is done from my bathtub. This is how I present as functional to the world.
This is how I present as functional to myself. I tell myself that my muscles could stop freaking out at some point, and I could return to working full time. I am not yet 40 years old. But disability allows for that. It’s not saying that things will always be this way. It’s saying that now, this is how they are, and likely to be this way for years to come. But if you recover the ability to work, there’s a plan for that.
I’m an excellent mother. My daughters are loved unconditionally. I’ve worked on reports with them, from my bathtub. We talk about their lives and their concerns… from my bathtub. I spend the two functional hours I have per day going to their concerts, working on committees at school, not missing performances. Making sure they know that I am there for them. I believe both of them would tell me that I’m doing a great job, and they’re kind and compassionate.
I need my daughters to internalize this message. A real woman rests when it is time to rest, and dances when it is time to dance. A real woman takes the time for self-care. If that self-care includes filing for disability, then that’s what it includes. I need to model for them that it isn’t weakness to ask for help, nor is it weakness to take care of yourself, and for me, that’s going to include filing for disability.
That’s strength. Not weakness.