To Those Without Concern;
August 8, 2013
One year ago I started the path toward getting disability benefits. I did this under the false assumption that it would be a simple matter of time. That my disability was outwardly invisible to most people but, if you listen and if you hear what I go through, it’s obvious. I am a broken man, compared to who I was three years ago. While my heart and, in many ways, my head has been healed by the compassion of a precious few who have saved my life from the very brink of despair, or worse, my body has continued to deteriorate because I do not have the resources to do anything else. I did not have the resources to avoid an accident the last time I drove my own car. I did not have the resources to treat my ever increasing joint pain for most of my adult life. I did not have the resources to look into why I would lose control over my basic motor functions and fall over, collapse, throw things, or shake so heavily it can only be described as a seizure. I did not have the resources to do anything about my homelessness, my decaying teeth, my hunger, and my constant pain and fatigue. I did not have the resources to take care of my mother and my little brother, who I had been supporting with my last job.
I did not have the resources to do anything but suffer and hope that I did not fall. I suffered through it because sacrifices are made by the strong so that they may feed the weak. I suffered through it because pain and fatigue are the marks of a struggle, of a burden born, of a noble life where nothing was wasted and quiet dignity was taken in doing what was needed because there was no other way. When that failed me, however, I did not have the resources to do anything else. Health care was always too expensive, let alone dental or vision care. My family was unable to support me. My friends were unable to support me.
And, as I have learned, when I was in pain and unable to work, when my joints had deteriorated and I could no longer do what I was trained to do, when I was in constant pain for the mere crime of being born in this body and living through trauma no one should go through, I learned that all of the time and energy I had put into supporting Social Security, all of the money I had put into Social Security, was not there to support me either. My state failed me, and it failed me in a way far worse than those around me who do not have the means, and sometimes do not have the will. It failed me by ignoring me, by forgetting me, by brushing me off and treating my pain and suffering like the act of a desperate man with other options.
I learned that when I come into a legal decision-making space shaking like the last leaf on the autumn tree in the face of the winds of winter, when my knuckles sound like old and dry bones falling into the crushing gears of a mechanical band saw, and when my mind is so spotty that my girlfriend must correct me on exactly how bad my condition is I am not disabled enough to be believed. I am not medically severe enough to be considered disabled, because there is not enough medical information to say that I am disabled.
I sat down to ask a series of questions here, to complain about something specific, to pour my story out and let the readers see this, to do anything to feel like I am in control. I am writing through fits of pain, through shuddering lances of searing electricity shooting up my fingers, because I cannot do anything else. Since I was a teenager I found solace in writing. It’s how I’ve kept my sanity, it’s what I’ve used to teach me everything I know, it’s what’s made me different. I adore the written word, I obsess over the written word, and I find a place of love and acceptance in the written word. Now I find that it is this exact obsession that has plagued me so desperately in this case. Because I am not a simmering simpleton I am clearly of clear mind at all times and able to operate as if I am not disabled.
I want to through academic words around here and go on a righteous rant about how this is clearly an intersection of classism and ableism, a place where those who are disabled are demonized for conforming to the society around them and keeping a “stiff upper lip” as well as never having the resources to show weakness. I want to explain how to keep your job in a tough economy, in a cut-throat industry, you have to be better than everyone else and cannot have flaws. I want to pound the point that I was not allowed to consider my pain and fatigue because “work is hard for everyone.” I want to plead for everyone to understand that I was told that this was common, that everyone felt this way, and that when I got home my utter inability to do anything but sit at my computer and breath slowly was what I was told to expect because it was my life and everyone apparently had a similar life. I want to show you how I curled up in bed at night after work every day, in so much pain I wanted to cry but I no longer had the energy. Only to wake up the very next day and do it all over again. To suffer and drive myself because that is what I must do.
Sacrifices were made because sacrifices were expected.
I am not going to throw around big words with complex meanings and long, sordid academic arguments though. This, clearly, does me no favors. Since I am capable of complex reasoning, it’s impossible for me to have moments where I cannot focus. Since I am in possession of an expansive vocabulary and the will to use it, there will never be a situation where I forget common words like “pants” or “sponge” or “knife” or “key”. It is completely impossible for me to have a neurological condition that causes pain, forgetfulness, and periods of dubious consciousness and still be a genius. As we all know, every genius in history was possessed of an incredibly sound mind without a single hint of neurological disorder or disability. Perish the thought that even the bright and seemingly capable can still be afflicted.
I am also not going to be hammering on the point that I live in a world where healthcare is still out of reach for people like me. Where doctors are not available to see people like me. Where my health is a commodity that I must pay for, a product that I must scrimp and save to afford. A product, mind, that in the grand scheme of things falls after those things needed for survival – food, housing, education, transportation, utilities, access. I am not going to explain how what some people see as luxuries, like access to the internet or competitive computers, are required for employment in the world I was in as an IT technician. That in order to keep up with my industry I needed to be constantly educating myself, staying on top of news in the industry, and expanding my skillset at every opportunity. Which took money and time. Money and time that could, theoretically, be applied to health care. Health care, though, was less important. My health, a working body and mind, was a commodity that was just too expensive. I told myself it’d be fine once I got into a good job. A job where I was making closer to six figures as an IT administrator or a network engineer. A server-side job where I could focus my skills how they were useful, a way that didn’t burden my mind that couldn’t handle constant customer and user interaction and incomplete fixes that I found in the phone-based IT support world. A place where I could work at my own pace, deal with my occasional inability to focus on anything for an hour or so, and interact only with other technically trained individuals who would understand what I was talking about.
I was hoping that I could pay for my health after all the stress had gone away. That is, until I lost my job because I couldn’t call people anymore. Because I looked at the phone with fear and anxiety, the kind of fear and anxiety that some reserve for spiders, snakes, tigers, and clowns. I had learned to see calling out as several minutes of heart-pounding anxiety followed by several moments of high blood pressure and fear, followed by a quick anxiety attack as I realized that who I was calling was not on the other end and I would have to do it all over again. A process I was expected to repeat every fifteen minutes, if not faster. I lost my job because my work suffered, my notes became sloppy, and my calls included dead space where I stopped responding for a few minutes before the person on the other end got my attention again. I sounded confused. I sounded lost. I sounded afraid.
I lived in pain for as long as I knew what work was. First it was my back, my lower and middle back. I had problems growing up with falling on things or being hit by things. Sometimes the fists of adults who were supposed to protect me. Sometimes it was the fists and feet of my peers. On a few occasions, it was the fists and feet of my friends. Once, a man who said he loved my mom and loved me dropped me on the arm of a couch. It may have been by accident, I don’t remember. My lower back, however, does. When I was a child, I could dislocate any of my joints pretty readily. Now they do it on their own and I slide them back when I can. My thighs and shoulders are constantly sliding around. Almost connected but not quite. My knees crack softly when I straight my legs. My ankles and toes and wrists and fingers crinkle and crack like a popping fire in slow motion when I move them. I can feel them, my bones, rolling around under my skin. Seeking the right place when they’re not shaped correctly for their homes anymore. This goes all the way through to my ribcage, which I have cracked. I cracked it earlier this week. I will crack it next week. This is my life. This has been my life for years.
What did I do to treat this pain? I ignored it. I drank occasionally, mostly beer from a nearby gastropub. I would limit myself to beers I had not tried yet. I focused on their sublime qualities, of the escape of being knowledgeable and insufferable about something. My first crutch was genius and obsession, and it will always be my favorite crutch. I defend myself from my fears and anxieties by knowing things, by examining things, by learning things. I hide from the pain and fatigue and oppressive weight of stress and anxiety and expectations by being smarter than everyone else and reveling in that fact. I have done this for as long as I can remember, having grown up with the narrative that the intelligent, that the crafty, that the wise, and that the cunning were all more deserving of respect than the strong, the able, the tough, and the stoic. Yet, through this very message, I became the strong and stoic, the tough and able, the man of quiet dignity and sharp wit who winced when he sat down or stood up but otherwise seemed like a near-encyclopedia about information that was of no value to anyone but him.
Notice, again, that no where here did I treat the pain with doctors or medicine. I could never afford doctors or medicine. I learned to deal with it differently, to soldier through it as best as I can. I was abused as a child. I went to a mental institution when I was 12. I was sexually assaulted in the group home I went to after that institution. I was ostracized by entire life by one group of people or another. When I was a young child my only friends were those who were on the outside like I was, the people of color and the disabled and the nerdy and the haunted. When I was a teenager my only friends were two boys named Matt who were so different yet uniquely the same – they were both emotionally fragile, emotionally disturbed, and knew no one else they could identify with in any way. When I was sixteen I left home with my then-girlfriend because my mom was in a constant stupor over a drug habit she could not fight effectively. My family was at war with me, a war that never ended on some level. A constant pressure to conform, to be normal, to stop being in pain and to stop having feelings. To stop crying and demanding respect and care. To be quiet, and good, and respectful, and happy.
So goddamnit I was happy. I made myself happy. I made myself smile. I learned to let my emotions roll through me. Did I suppress them? Bottle them up? No. I never had them to begin with. When I ran out of energy to even have emotions when I was in pain and no one helped, when I was shouted at for caring and for feeling something, when I was too human to be respectable anymore I learned to no longer have emotions. I learned to be cold and distant. To hide my pain in indifference and quiet. To become withdrawn and invisible. To become small and quiet and disappear as if I were made of naught but dust and shadow. I learned that you didn’t deal with pain through anything but stoicism and strength. That you let it roll through you and you marched on regardless.
From the very moment I could have health insurance, it was too much for me to afford. I had bills to pay. I had an education to pay for. I owed money to people for things I needed before I could take care of myself. I walked into my adult life with debt and it’s never left me. Debt that constantly haunts me and tells me I need to make more, save more, do less, survive with less. I don’t need to eat so often, I don’t need those clothes, I don’t need to repair that part of my car, I don’t need that book, I don’t need healthcare. I’ll deal with it. I’ll handle it. What I need is to pay my debt, keep my apartment, make sure my family isn’t starving and homeless, and keep educating myself for that better job. That job that’s just on the horizon, that job I was promised my entire life. That job that my parents and grandparents and teachers and educators and principles and politicians and strangers and employers and the very economic system promised me I’d have.
I was told I would never have to worry about being poor. About being homeless. About starving. I was told to go to school, go to college, get a job. I was told that I was a genius, that I wouldn’t have to worry about anything. That my grades didn’t matter much because my test scores were always among the top in the nation. That everyone was dazzled by just how smart I was and how much potential I had. I was going places.
Well, I was going places. I was going places until the economy started failing people like me and the best jobs for people like me, people with years and tens of thousands of dollars of training finding part time work at $12 an hour in dense population centers. Jobs that couldn’t support someone without loans to pay back. Jobs that couldn’t pay for standard living expenses of one person, let alone help anyone else out. So I borrowed more, I lived with friends, I sacrificed my health care. I did all I could to survive. I didn’t go to a “good” college – it cost too much money and I left high school early. No one gives scholarships to people with the California High School Proficiency Certificate. Or, if they do, no one told me. Not a surprise, though, no one told me anything. I just kept doing what I was told to do – chase jobs you knew you were qualified for, be honest, be yourself, don’t smile too much, don’t be depressing, and work hard. Work as hard as you can.
I did everything right. I still didn’t get paid enough and, when the people in power in our economy ruined the world, I lost my job along with everyone else. I lost my home. I lost my happiness and my sense of self. My place in the world. I looked for a new job, despite the fact that I was beginning to get constant back pain. Despite the fact that I would zone out for hours at a time when I was depressed without being able to control it. Despite the fact that I would wake up with my heart pounding in my hears and gasping for air for no reason. I didn’t have healthcare – when you don’t make enough money to live on, when you don’t make enough money to pay for health care while you’re working, you don’t make enough money for COBRA coverage. When I found another job, a job that paid even better, I went back and did the same thing. This time, however, I also had to care for my mom and my brother. They were homeless because the system failed them too. My family failed them too. She wasn’t on drugs anymore but it affected her. It left her broken and afraid. I couldn’t let her just waste away. I couldn’t just shut my love and respect off there – she had raised me, through my anxiety, through my awkwardness, through my abuse, through my prattling about things that weren’t real or understandable, through the episodes that would get me labled as Borderlines Schizophrenic at the tender age of twelve (a common occurrence, as it turns out, for people who are on the Autism Spectrum). Once a week, she would drive three hours to bring me a candy bar and a sibling. To remind me I wasn’t alone. I owed her, so I did everything I could for her. I sacrificed my health for her.
Sacrifices were made because sacrifices were expected. I was trained my entire life, by every system I ever encountered, to sacrifice. That I was strong, that I was capable, that I was powerful. It was my responsibility to sacrifice. To do my fair share as well as the shares of those less capable because they deserved dignity. Respect. Help. Because they were still people.
This is why we pay taxes is it not? To help those who cannot help themselves? To be there where god and family have failed? To provide a safety net to those who are torn asunder by the vagaries of an uncaring market manipulated by callous individuals who are indifferent to the suffering of the poor, the disabled, the outcast? This is what I was told my taxes were for. That the Welfare State was created to help those who really needed the help. Sure, there might be some people exploiting the system, people fully capable of work, but they got on first then were found out. That was the system – false positives were preferable to false negatives. We’d never knowingly kill the disabled and the poor by telling them they weren’t poor or disabled enough, right? We would never create a downward spiral of homelessness, starvation, pain, suffering, and erasure by telling people who were suffering from legitimate pain that they were not, in fact, measuring up to our standards of “impoverished and suffering” despite being impoverished and suffering, would we?
We do, in fact. There is a man in Orange County who callously wrote that I am not disabled enough. That I do not conform to the strict standards of the Social Security Administration in regards to what constitutes in enough pain or incapable of working enough to qualify as disabled. Despite the fact that I blacked out and struck a freeway sign and another car three years ago. Despite the fact that I am in pain right now as I type these words, despite the fact that my life is pain management now, despite the fact that when I stand up or sit down my body screams in agony, despite the fact that focusing on anything for twenty minutes is strenuous on good days. I am not disabled enough. There is a man sitting in Orange County who sat in a room with me, looked upon me with compassion, heard my joints and the explanations of pain, who heard me explain that I have lived in poverty my entire life and could never afford to see a doctor and still decided that without an extensive medical history I was faking my disability.
A man who wrote a document that said that they cannot find veracity in my explanations of my condition and my past. A document that, by stating I cannot be found disabled due to people making statements about my condition and “being obviously predisposed to favoring” me, stated by implication that I was lying about my condition. That I chose to be homeless. That I chose to starve, including nearly a week of having no food at all, no money to get food, and no energy or ability to get up and move without assistance. That I chose to have seizures. That I chose to shake in his very adjudication room nearly constantly. That I chose to be able to crack my knuckles constantly, on demand, or experience pain. That I chose to leave an industry where I could still be making over $50,000 a year doing something that comes easily to me for the possibility of getting less than $1,500 a month. That I chose to be unable to drive anymore. That I chose to stare off into space, for up to an hour, without any control. That I chose to live in abject poverty. That I chose to throw objects at people I care about, throw objects that I prized or adored, throw objects that ended up hurting me and that I had to clean up because who else is going to? The only thing I did choose was to use marijuana to deal with my pain. A choice that has, so far, done nothing but help me.
Who would chose the indignity of homelessness? Of disability?
Who would chose constant pain and fatigue? Who would put the time and energy, dedication and suffering, into being treated as subhuman? As a criminal? As a liar until proven otherwise and yet still distrusted despite it all?
If I did, in fact, chose to lie then I am still disabled. If I did, in fact, chose to suffer the indignity of being disabled and pursuing the support that the disabled are entitled to for basic dignity and respect in an economy that only speaks in money in a system that sees them as an enemy and nothing more, then clearly I am so delusional that I am incapable of caring for myself.
~ Daniel A. Samuelson
Tagged: abandonment, able body privilege, ableism, CFS, class privilege, classism, constant fatigue syndrome, constant pain syndrome, CPS, cruelty, disability, disabled, doctors, fatigue, feminism, fibromyalgia, fibrositis, health care, health privilege, healthcare, indignity, inhumane, pain, poor, poor healthcare, poverty, rant, resources, Social Security, Social Security Disability, SSD, SSDI, SSI, suffering