I used to be so funny. Honestly, I still am, but it's harder to believe now. I amuse myself, and that's usually enough. I tell jokes that are just for me. I tell jokes to boring corporate types who enjoy making mission statements. Those jokes do not go over well, and I am left with an unfunny stench on my person. I hang my head and go back to my spreadsheets and my organization bins. I know I'm funny. Others used to know it, and someday, they will again.

Can we just take more naps? I feel good approximately 3 hours of the day. I want more naps.

Years ago, I used to ask Mary to shout out a topic and then I would write about that topic for a few paragraphs and then I would post it on the internet for people to read. I'm pretty sure Mary is the only person who read it, but it was a fun exercise. If I'm going to start writing again, I need to start somewhere, right? So maybe I'll start right here.

I miss making short films, so I would like to make another short film. Have you seen "Samantha, A Short Film" yet? You can click on it now and watch it. You don't even have to finish reading this sentence. I would prefer you watched it.

The First Step

Writing. Nope, ideating. Starting at a blank page. Watching that cursor blink back at you, taunting you. Damn you cursor, damn you. That's the step I'm in now, the first step.

Proof of Life

“You just need to build some muscle.”
“No, I can’t feel my legs.”
“Prove it.”

I have an unnamed invisible disability. My account of events and feelings can quickly devolve into a pity party and sounding overly woe-is-me. Truly, I am grateful; I am grateful for what I have, for how well my recovery went in spite of everything that could have gone wrong, and for the support I have. I am not a spokesperson for differently-abled people. I aim to present my perspective to widen the discourse and understanding of all the things we cannot see in each other. I am constantly proving my disability — proving it exists, proving both my capabilities and my limitations in exchange for some human kindness. It’s not enough that I know what I can handle, I have to share with anyone who thinks they deserve to know what I can handle and why it may be in contrast to what they think I should be able to handle. If the proof measures up, then perhaps this stranger will extend some common courtesy. This persistent battle takes a toll.

My disability is permanent but not congenital. It’s been 16 years since the onset of cauda equina syndrome that temporarily paralyzed me and then permanently disabled me. Most cases are dealt with within 24-hours of presenting symptoms. My diagnosis and surgery took place two weeks after initial onset. I was in the Navy and underway at the time. I spent years proving my worthiness to exist in that space. I proved I was indelicate, that I could handle pain, and that I would not be held back by the great offense of being a woman. Midway through a 30-day training underway, I woke up in my top rack and could not feel my legs.

I stared down at my toes and I couldn’t move them. I felt pain concentrated in my lower back yet I couldn’t feel my legs at the same time; the cognitive dissonance of these sensations plagued me. After some whimpering, screaming, and manhandling, two of my state-roommates had maneuvered me down 4 levels to the medical department. I had to prove this pain was real and big and that my panic was warranted; the two adult women holding me up on either side were not enough. I was offered Motrin. I repeated this process the next day, and a few days after that, to be seen by doctors who spent more time doubting the pain than looking for its source. The best I was offered was to debark the ship first when we pulled into port. I was sent back to my stateroom to sleep on the floor for two weeks, memorizing safety manuals and watching DVDs.

The hospital had trouble believing this pain also. An x-ray revealed nothing broken and I was sent on my way with crutches. My stateroom-mate took me home with her. After the most embarrassing moment in my life of voiding my bowels while I lie face down in her living room after falling in an attempt to get to the bathroom, we headed back to the hospital for a 7am MRI. By 1pm I was on my way to emergency surgery for the severely herniated disc that was causing cauda equina syndrome. I was already in a state of paralysis that was getting worse every moment this disc was pushing against the nerve endings. Without emergency surgery I would be paralyzed and lose all function from my waist down, without question. With surgery, there was still the possibility of paralysis and loss of function, but there was a much better chance of relief and recovery. Every moment I spent on the ship, unable to prove the seriousness of the pain and numbness happening at once, the disc was pushing further into the nerve endings, like a heavy couch on a plush carpet, paralyzing me more and more, cutting off my bladder and bowel function.

The initial recovery from the surgery was also painful, because surgery is just people cutting into you. The surgeons casually nicked my spinal cord during surgery and some pesky fluid leaked out. When I came out of the anesthesia and was brought to my room I was told “DO NOT MOVE FOR 24 HOURS.” The IV was inserted wrong and was filling my hand with morphine but was never actually administering drugs. For 24 hours I laid there, in fits of pain, unable to move, being shushed and scolded. When I could sit up again, I saw the trouble with the IV, ripped it out of my hand, and had the ID bracelet cut off. The morphine spread through my whole damn arm. I had to prove the pain.

The immediate milestone was learning to walk again. After three days, I could get myself out of bed. Then from bed to chair, then from chair to taking what were kindly referred to as steps. I was moving forward, but like a turtle does. Like a turtle who had lost control of its legs so it scoots its shell along the ground. I was also in the process of relearning how to urinate. Self-catheterization is performed with a tiny tube you delicately put into your urethra and hold in place while the urine voids into a plastic dish in the toilet. Technically you can do it without the plastic dish, but measuring how much you void is part of the process. I also had to relearn how to vacate my bowels. There is no delicate way to phrase that, or if there is, I don’t care to learn it. I had to retrain these functions that were once autonomous into being autonomous again.

I had daily physical therapy. It was two to three hours in the gym with various weights and machines and doctors, five days a week, for 12 months. I was placed on shore duty where I would read nuclear training manuals over and over, trying to memorize them. Eventually everyone realized how much longer my recovery was going to be and I was assigned an actual shore duty with work to do.

A year after the surgery, the neurosurgeon told me that where my body was at that point is where it would be for the rest of my life. There might be very minor improvements in some things because the body often finds ways to compensate. But overall the loss of sensation I was experiencing in the posterior of both legs, the sides of my feet, and my saddle area were never coming back. Those nerves had been irreparably damaged. This would be permanent. Permanent is not easy to understand; it’s sort of ineffable, a concept that is proven false over and over. I had a severe limp for a while and eventually it diminished. This looked like change and it was a signal of the impermanence of the disability to those not experiencing it. It was just a symptom that my body eventually compensated for.

I know my body, its capabilities, and its limits. I should be able to be in charge of it. Repeatedly, I have to prove this to people who think they know my body better than I do. It’s an invisible disability, on the level of a chronic illness. You never know what’s going on inside people, and also — it’s none of your business and it’s not their job to explain it every moment of the day. If you see me walking down the street, you probably just see an overweight woman walking sort of slower than you’d really like her to. And for some reason you think it’s your job, a service you are offering, to comment on it, me, my body, my walking, my slowness. You provide this service in case I wasn’t aware of how it offends your senses and the makeup of society, as though I were walking down the street with shit-covered toilet paper stuck to my shoe. I was sort of hoping for some common decency and that you would just sort of go around me, or give me a courtesy nod that says “yeah, being human is tough.” Instead I got a lesson in how to be more like you, and you caught me with my guard down and I think about how I have to prove it that I’m not just slow to irritate you, but I have an actual reason. Should I show you my scar? Should I carry around my MRI scans? Should I let you perform invasive laparoscopic surgery on the street so you have proof that I am doing the absolute best I can?

I did this to myself so I deserve the pain and the disability and the ignorance that comes along with it. If I had done my physical therapy better, my nerves would have reconnected and I would be normal. It’s really my own negligence and laziness that caused this disability. I don’t deserve kindness because it’s my own fault I ended up like this. This is actual bullshit people say. People also ask how it happened, as if it’s really their business. The truth is I don’t know, but they’re pretty sure it’s because I’m overweight and the discs just protruded and tried to kill me to get away from me. So I did this to myself by being fat and if I wasn’t fat anymore it would be fixed. The disbelief in permanence is rearoused.

I believed the neurosurgeon when she told me it was permanent. I do not believe the hippie acquaintance who told me that neurosurgeons don’t know much and I could realign my DNA and reconnect nerve endings with clean eating and some charging crystals. No. This is not real, please stop suggesting this to me. Friends, family, acquaintances, and coworkers often forget. That's fine. But it does get exhausting to re-explain it every time a new activity comes up. Yes, I can go for a bike ride on a relatively flat course. Mountain biking? No, I can’t do that. Then I have to prove it. I explain it’s not because I’m lazy, it won’t be good for me, it’s that I’m literally broken and do not have enough power in my numb legs to push my bike up a goddamn mountain.

I look relatively young and able-bodied. It seems like I will be able to cross this street evenly, swiftly, and safely. But it’s actually a task that has taken a lot of practice. I do not have good balance. If an 85-year-old man is hanging onto my arm for support, there is a very good chance we are both going down in the middle of the street. Going up stairs is a task for me. I need the handrail for support. My quads are doing all the work even though it looks like the whole leg muscle system is on it. If a mother pushing a stroller with her baby inside asks me for help carrying it up the subway steps, I will absolutely fall and drop the stroller and baby along the way. I know this. The mother is depending on the kindness of strangers, but I am not that stranger. Neither of us actually has the time for me to prove my weakness so instead it’s a quick “miss, can you help me carry my baby up the stairs?” “No, I’m sorry, I can’t.” “Bitch.” And I go on my way while someone else helps the mother with her child.

When apartment hunting, I requested to not be shown any apartments that were above the second floor in a non-elevator building. I preferred the ground floor, I could put up with the second floor, but if it were any higher than that I would need an elevator. The realtor showed me a third floor apartment; I struggled on that last flight. She chuckled and said I would get used to it eventually. No, I would not. We stepped in and as she went through its features, I remained wholly uninterested and ready to leave as soon as I could catch my breath and the immediate pain subsided. “I can’t live on the third floor without an elevator.” She accused me of being unreasonable and uncompromising. Then I had to prove it to her. I had to explain my whole disability, the injury, the recovery, the limits and conditions under which I live. This person was a stranger yet somehow cleaimed the right to my existence, and deserved to know exactly why I deserved some common fucking decency and to be shown an apartment with features I requested.

The surgery that was performed was a discectomy. Perhaps there is a more sophisticated or specific term, but this is how my surgeon explained it to me. The disc between my L4 and L5 vertebrae was removed. The whole thing was just taken out and then I was sewn up. Those two vertebrae now reside in my back uncushioned. I can feel it; when I've walked too far and my back hurts I know it’s because those two pieces of bone are rubbing against each other. Everybody knows someone with back pain, back trouble, who has a bad back, etc, and this gives them unfettered permission to tell me why my back pain isn’t real, how the surgery I’ve reluctantly described wasn’t the best choice, and how I probably shouldn’t have had surgery at all. I am unfailingly told “Oh, I wouldn’t have let them perform back surgery. That’s dangerous.” Additionally, almost everyone has an uncle who was in the Navy and was discharged and is receiving benefits that are different from mine so I should look into that and then maybe sue the U.S. Navy because that’s what they would do. Career advice is now on the table. Moments ago I was peacefully but slowly existing and now I’m getting career advice from someone in the neighborhood who is just trying to help. I don’t need his help and I resent divulging every detail of my history to someone I don’t know very well. This happens at a rate I previously thought inconceivable.

I worked a job that required employees to be able to lift 50 pounds. I can lift 50 pounds. I can carry 50 pounds on a flat surface from one side of a warehouse to another. I can also put a few 50 pound bins on a dolly and push them across a warehouse because this is why humans invented the wheel. I repeatedly had to explain why using simple tools was better than trying to carry 50 pounds multiple times across the floor. I would also lift with my legs; the ridicule I got from that should have been enough for some sort of HR grievance. Instead I had to tell my coworkers why I couldn’t be a reckless animal with my back and why really, these things shouldn’t be on the floor anyway. I had to repeatedly announce to everyone that I had a disability they couldn’t see but needed them to just be cool about it and let me work my own way because at the end of the shift it would all be done. They would also suggest that if I had a disability maybe I shouldn’t be doing that job and Hello? HR? I know I just called but I have something else. It was never enough. A man for whom a haircut is too much maintenance and disco fries were an acceptable delivery-stop breakfast had the audacity to suggest clean eating and yoga to my face. He opined I must need his feedback, afterall it is likely worth more than my experience. Also, yes, I have to prove my experience. Over and over. I have to prove I’ve attempted clean eating and yoga and that still, this disability is permanent.

I do not want to be defined by my disability; I don’t want to believe I am broken. It is always with me so indeed I am a little broken, but in that more-beautiful-for-being-broken sort of way. What I would like is to be extended some common fucking courtesy in the form of believing what I say when I tell you I know what I can and cannot do. I should not have to prove it over and over. I shouldn’t have to keep a record of every attempt I’ve made to “get better” as a receipt to justify why today I can’t walk as far as I walked two days ago because sometimes days are different. I deserve autonomy over my own body. Everyone does. Every time I have to give away all those details of my life to people who really don’t deserve to have them in exchange for human decency, it breaks me a little bit more. I even start to doubt whether or not I do truly deserve to move around without checking in with more able-bodied people than me. I’m thinking about going for a walk later but I have to really plan it out because I need to ensure I can sit down a mile into it. No, I do not need your diet and exercise tips, I just need to sit down for a minute. On the other hand, maybe I should stay inside my ground floor apartment and do yoga and have some clean food snacks so everyone else can be a little more comfortable. Maybe they’re as exhausted of making me prove my worth as I am of having to prove it.