I Am A Faker: The Reality of Living with a Disability

There is so much misinformation and propaganda out in the world regarding the disabled. I hear people talk about the ones that "fake it" and social programs such as SSDI are called "entitlements". Disability Fakers by the Mighty  Being judged without people knowing my story is awful. I worked for 20 years. I have held a job since the time I was 16 years old. To be part of a demographic spoken of as expendable or a parasitic is an awful feeling. Here is the reality, I am different.

I am different. My body is different, my mind works differently, and my ability to recover and respond to situations is very different. I don't fit a mold. I don't fit in the nine-to-five, measured box that is comfortable for society. Interacting with me is harder, I don't get out much, I am not the life of the party. I am not charming and exciting to be around. I will not improve your social cache. Knowing me offers no financial improvement, no special bonus points, no benefit other than my company, but that does not make me worthless or expendable.

I am quiet, unassuming, going about my day which consists of rehabilitations activities, medical appointments, maintaining what part of my life I can, and trying to get better. I am lucky and blessed. I know who I am and what I can do if given the opportunity, but I am still healing. The damage from my brain tumor was extensive and to a part of my brain that is vital to function. I am working to improve and I am so very grateful that I have that opportunity that is denied to others.  I know and have lost dear friends who had no hope of improvement. 

Every three months or so I have to complete another packet from my insurance company assessing my skill level to see if I can return to work; it has been 19 months from the time of my emergency brain surgery. Along with questions regarding daily activities I must submit information from each of my specialists- I see six, soon to be seven medical providers. I must have an assessment of my personal skills completed and I am required to provide documentation in writing with notes and contact information. It takes me days to compile this even though I save copies of everything. No part of my life is left unexplored, no information is too invasive or off limits. I have no private life, everybody knows everything.

Every day I fake it. I fake not hurting, I fake my smile. I fake understanding when things move too fast for me. I fake being thoughtful when I am so overwhelmed I cannot respond without stuttering or freezing up. I fake being calm when I have a new range of symptoms. I fake it at the grocery store where I plot my list well in advance and go during my best time of day when there are likely to be fewer people that I have to interact with.

I get up in the morning and make sure that the first two things I do are to get dressed and make my bed. Why? Because if nothing else goes right it at least keeps me moving forward and less likely to burrow back into bed to hide from the pain. I do have pain. On a scale of 1-10 I live at around a 6, when I let myself think about it. I try to think about it as little as possible. I schedule my day with regulated therapies and a rigid schedule that keeps me moving forward. I have regular ands frequent breaks and try to hold to the advice of my rehab team by setting my schedule "in Jell-o". I try to allow flexibility where I can but with the brain trauma the more predictable my day is, the less stress it creates for me.

I fake competence in any area, doing enough to get through it. I used to excel as a student and took pride in learning for the joy of it. I loved doing research and presenting my findings to my co-workers, preparing handouts and teaching tools for those that I served and worked with. Now, I am struggling to hold on to a "B"- and it is taking everything I have to attend online classes at half-time. It takes me two to three times as long to grasp even a part of what I could learn by reading it through once. I fake humor about the pain, about being dumb, about getting through this and holding on to the lessons that I have learned. I have already done more than what anyone expected but still I "fake it".

System Fail

Learning to navigate this new world, the world of can't and have-to, can be both overwhelming and discouraging. It is especially frustrating when the very systems set up to help those with disabilities actually serve to impede progress. We, who spend so much time overcoming limitations, must go out of our way to explain and review those same limitation to prove that we need assistance in healing and overcoming challenges. I had to request some documents from my Social Security case because of a mix-up with paperwork. Due to the nature of the paperwork it was necessary for me to request the documents from my local office.

Sitting in the Social Security office felt so completely different from my other interactions through phone calls and online support. Petitioners collect into a large room just off of a hallway, an armed security guard at the front of the room. We take a number and sit in chairs, watching a screen as we wait for our number to be called. We sit with stacks of paper, some crying, all tense, and wait. Sitting there it feels like the very hope in your cells is being drained away and you are left a husk, a shell, empty of all vitality.

After everything vital has been drained from you, you wait some more. Sadly my wait was not considered long compared to what others have done. Your number is called and you are directed down a long hallway of glassed booths. High walls, squeaking chairs, and hard floors reminiscent of a school cafeteria create a hallway of pain. Petitioners speak through small round holes into the windows, at the workers inside.

Separated from each other and restricted from any meaningful connections, the workers provide documents and pens to complete forms. You can hear muffled cries, scuffles, and whimpers around you. There is nothing to absorb the sounds of grief and pain, no softening, no contact with one another. For me, the sounds ricochet and build, making my sound sensitivity unbearable. My husband has to help me fill out the simple request form. My worker leaves me to complete the form and returns when I am done.

I am told that records, though stored through this location, are not accessible at this time and I will receive a response in the mail in a few weeks.

I do receive a response, there is a $44 fee to retrieve the records before I can have them sent on to a third party, like my medical provider. I am not allowed to directly receive a copy of the report, I am the patient, not a medical provider.

More than 8 weeks from my initial petition and there is no sign that the records have shown up at my providers office. So, we wait.

How much time to petitioners spend in limbo trying to understand the status of their case? Trying to access help? Trying to find ways to cope with life altering situations?

I am blessed. I have wonderful medical providers who help me to navigate this world. My case manager through Social Security has been both helpful and concerned for my recovery. I am stuck on the level of demoralization that came from sitting in an office, making a records request that could not be done over the phone or by mail. I pray that I never have to return to the office. It feels horrible. I cant imagine the effort to get up each day and go into that office by the workers. I was never treated unkindly, but the very nature of the sterile environment and an armed guard greeting the disabled and inform as they complete requests for information is demoralizing. There has to be a better way to greet those most in need. We can do better, don't you think?

My Hardest Day, So Far

"I can't, in good conscience, put you through this. I will contact social security with what we have, if they need more, lets meet another day and start fresh. I just can't do this to you, even though you are willing."

Todd took the day off so he could be with me. I am so grateful he was there. With my experiences working I have taken teens and youth for similar exams to evaluate performance and identify strengths and weaknesses. We knew the tests and evaluations to assess my present state would be challenging for me. I hoped to complete the exam and that results would show where my damage was done and specific deficits I am working around.

With my rehab I have done many similar type exercises. As I set to work, it became apparent that this was vastly different. I couldn't use any of my coping strategies. (My evaluator called them 'cheats'.)

"Really? I can't do that?"

"No, we need to see how your mind works without them."

"It doesn't. I don't think I can do it if I can't separate things out."

"Do your best."

That has been my mantra. Do your best. Try and see if you can do it yet. According to what Todd was told, it took me over 10 minutes to attempt an exercise that takes most people being evaluated 2-3 minutes. After relearning shapes this summer and working through using patterns for problem solving I was stymied when faced with new or irregular shapes that didn't conform to consistent patterns.

Further testing confirmed that without visual aids my maximum short term memory is two to three items, at best.  There is a difference between suspected limits and confirmed limitations. After sobbing out that I could remember the shape in my head but I didn't know how to draw it, I felt so low and stuck. I keep repeating to myself that where I am now is not where I am going to stay, but it is hard to consider how much I have to relearn. At least in the real world my 'cheats' are just accommodations.

This assessment pushed me completely to my limits. I did everything I was capable of, it was even less than I had hoped. My head aches, my neck is on fire, my voice fades in and out. I slept for three hours yesterday after coming home, and then slept for about 10 hours last night. I am still tired but my body just can't sleep any more. Easy day today. I have taken more pain meds in the last two days than in the previous month.

Overall, it was hard. Harder than I imagined to complete only one part of the assessments requested by social security. I am facing one more assessment for them and then a complete workup requested by my neurosurgeon with a neuropsychologist. I am both afraid of and looking forward to the evaluations.

I know I am missing large parts. I know things are very different. I am still grateful and floored that I retained as much language as I have and that life led me through experiences with such repetition and familiarity that I use every day. I am so grateful that my experiences in social work and with the Teaching Family Model applying cognitive behavioral techniques were such a large part of my life over the past ten years. It's how I function every day. Models for my daily schedule are based on the schedule I kept for our youth, to help them regulate after abuse, while they mentally healed. I use it for my physical mental healing. Its going to take a long time.

There it is, I have a long road. More tests. More assessments. More relearning things I took for granted. I am grateful. I am scared. And sometimes, I am embarrassed because our culture does not look kindly on the broken. I am aware enough to know how far I have to go and that some pieces will never be reclaimed. I try to hold to what I have. To hold my boys and know that for them, they just need their mom. Sometimes its hard, so I give myself space for that too.

My advice, do your best. You may not be there yet, but you can keep moving forward. God bless and keep you.