Sometimes in life you have to get a little lost before you are truly able to find your way.

Posts tagged ‘disability’

Oscar-winning Performance.

oscar11Otherwise known as…your life. When you live with chronic pain, life truly is your stage. You smile; you make small talk; you get through as much of what must be done each day as you can. You show up to work, perhaps. Many of us can’t anymore. We’ve lost that theater.

It’s hard at first. Particularly in the early weeks and months when you haven’t yet stopped waiting. Waiting for the pain to stop, or lessen. It’s the moment when you realize – or perhaps accept, more accurately, that this could be – most likely is – permanent. The pain isn’t going away. The condition – it’s a part of you. It has been your primary focus. The focus of your doctors, your friends, family, coworkers, schoolmates – everyone you know or see. But in that moment of acceptance, something changes and you begin weaving it into the background in ways you never thought possible. Doing things you previously imagined you might never do again. You take off your sun glasses for the sake of respect in conversation. You drive, despite the piercing pain of the headlights. You attend a party you know will take a devastating toll. You go to the grocery store. You take your kids to the park. You do the things that most people take for granted each and every day. And you do it in pain with a smile on your face because it’s how we have learned to survive.

fire redYears go by. You realize that there are more people in your life who have never known you without this pain than those who ever knew you pain free. Some still don’t know. It’s incredible. The reactions when people find out? Sometimes I’m not sure if I’m more astounded by how they could have missed it than by how I could have hidden it so well. I think back to all the times in conversation when I thought I would pass out from the pain – but apparently my performance never faltered. I have former clients from my consulting company who demanded me on all their projects. They never knew. Coworkers who were clueless until the day I left on disability. People in all manner of interaction who react in such amusing ways when they learn the truth that has literally be right in front of them. At least that’s how I’ve learned to look at it. Some with awe – both at my ability to hide the pain, and that to withstand it. Some with shock or sadness or my very least favorite (read: I HATE this….) – pity. “Oh you poor thing!” I get it. I can’t blame them. I think it’s meant more as an attempt at compassion, but pity is pity and I work too damn hard at this to be pitied. So do you.

oscar_fallen_hLet me ask you something though…if any Hollywood actor was told he/she would be on set for the rest of their lives, never allowed to break character…what do you think the reaction would be? Disbelief? Outrage? Laughter? That is the role we often feel we are cast in. Keep up appearances. Hide the pain. Wear the mask. But let’s be real. None of us can do it. We can’t hide it all the way all the time. And we need a safe place to remove the mask. The let down our guard. To be vulnerable. To be in pain openly. Cry if we need to, even though it makes it hurt more. Somehow, every now and then it helps too. Sometimes just being able to say that it hurts. Or that we’re tired of it hurting. Without judgement or pity or guilt or frustration. That’s a lot to ask. Of anyone. It’s hard for those who care for us most NOT to feel those things. Not to show those things. And they will come out too from time to time, so to be fair – I guess we can’t expect to never get that side of it.

different kind of maskBut do you have that safe place? Do you have those people in your life that you can be nakedly in pain in front of without judgement or pity? Do you have a way to step off the stage and just be – you – pain and all? If the answer is no – then something has got to change. Finding that safe place – that safe person or people – is worth a thousand “remedies.” The mental and emotional and physical fatigue that accompanies these daily performances is SO underestimated.

Give yourself the credit you are due. Take the breaks you need to take. Find the safe place. The comfort, support and tenderness you deserve. Take off the mask and cry. Curse your pain and all the effort it takes to hide it. You’ll be amazed at how renewed you will find yourself. How much more comfortable that mask is to put back on when you get out of bed, or take a shower or walk out the door or if you’re lucky enough – when you go to work. It sounds like such a small thing, to stop acting for a short time. But it has a power that those who don’t go through life wearing this mask will never comprehend. How lucky they are.

Here’s to the performances, the intermissions, and most of all – those who make taking off the mask possible!

This post goes out with a special thanks to my amazing family and friends – thank you and I love you all so much! I could not fight this battle without you!

DWD – Dating While Disabled

Are you the kind of person who just meets people anywhere you go? The supermarket, dog park, pharmacy? Or are you the bar-going type? Online dater? Doesn’t matter does it? Because all those conversations start off pretty much the same way. Hey, how are you; what’s your name; what do you do? Ahh…and it was going so well. Oh I’m actually on disabil….see ya! We’ve all been there. We’ve all had those thoughts. The “who is ever going to want to be with me? Who would ever put up with this insanity? Why would anyone choose to be with someone in my condition?” thoughts. Many won’t. Some will, but for the wrong reasons. Because they have a need to fill and taking care of you does that. Trying to “fix” you does that. But here’s the thing…there are people out there who don’t care what you do. They don’t care that you aren’t “able,” that you can’t work, that you live with pain they cannot imagine. Hard to believe right? If you can’t quite get there…let’s go back to that dreaded question…”what do you do?”

Why does our profession count for so much? How did it come to define who or what we are? When we lost our ability to work, did we stop being who we were? Or what we’ve always been? Did the person we are suddenly cease to exist too? No dammit! Ok, so yes, it sometimes feels that way. But the REAL answer is NO! We are not our job. Let me repeat that. WE ARE NOT OUR JOB. I used to work as a public outreach specialist for an environmental consulting firm. I was good at my job. I didn’t always love it. It challenged me. I traveled. I helped people. And there were parts of it I couldn’t stand. But the job was never my identity. Yet somehow, when we are stripped of our ability to work, no matter what that work is, we DO feel stripped of such a big part of ourselves. Partly because it strips us of our independence – but that is different and we HAVE to make that distinction. Partly because some of us truly love our jobs and we miss them. But that doesn’t change WHO we are or WHY we loved that work.

What if no one was allowed to talk about their jobs when asked who and what they are? How might that change the dynamics of dating, making friends, all kinds of human interactions? How would you answer? How DO you answer? I’m tired of answering with “well, actually I’m on disability so I don’t actually do anything.” Well that’s total B.S. Anyone on disability knows that being on disability is a full time job. I manage my condition, deal with insurance issue after issue after issue; doctor’s appointments, pharmacies, billing issues, coding issues. It’s exhausting. So no, I don’t do nothing. But all that stuff that fills an absolutely inordinate amount of time – that’s not who or what I am either, any more than my former job was. But here’s the real gem – it doesn’t determine my value either – not to myself, not to anyone worth my time.

Sounds like a bunch of idealistic B.S., I know. Everyone judges right? Wrong. There are people out there who don’t run. Who look at me as a person, rather than a liability or a charity case. There are people who see strength where others see failure or, my favorite – someone “working the system.” Please. If any of those people had ever tried living within the system – they’d drop that opinion real quick. It sucks. I didn’t want this. I didn’t choose this. This is not who or what I am. And it’s not who or what you are either.

So here’s my challenge. Answer. Answer the questions we all dread. What do you do? Tell me about yourself? Who are you? What are you? Leave former careers out of it. Leave disability out of it, if you want. This isn’t about lying or deception. This is about getting to the part of you that isn’t your disability. No one is going to fall in love with your disability – they’re going to fall in love with YOU. So dig deep. I have a feeling you’ve forgotten much of what ought to be in those answers. Let people see you. The REAL you. Not just the labels or the past or the stereotypes. Write it down. Scream it out loud. Tell it to a stranger. Tell it to yourself. Remember it. Believe it. Do. Not. Let. It. Go. Again.

Here’s to truth, denying jobs as identities and to the REAL YOU!

Getting Back on the Horse

I’ve been debating how to start this post for some time now. For anyone who has followed this BLOG, I’m sure it must seem as though I’ve dropped off the grid for no apparent reason, adopted a new identity and for the most part, abandoned writing. In truth, only the first part of that has been true. I definitely dropped off the grid. But there was a reason.

To explain that reason I have to summarize a bit of what is wrong about our social security (disability) system. And to do that, I have to explain much of what is right about our veteran’s disability system. When a member of the military has “disabilities, diseases, or injuries caused by or aggravated during active military service,” they are eligible to apply for a disability rating through the VA disability rating system. To put it very simply, for every disability, a vet gets a rating from 0%-100% and receives disability pay commensurate with their rating. If, for example, they have a back injury that is rated at 15%, an arm injury rated at 5% and a psychological disability rated at 20%, they have a combined disability rating of 40%. Over time those injuries often get worse, and the rating and pay increases accordingly. The key here is that the disabilities and corresponding compensation are not all or nothing. This system recognizes that injuries can (and do) affect one’s ability to work at different degrees. It does not require that someone be 100% completely incapable of doing any kind of work to receive compensation. THIS MAKES SENSE! And I don’t mean it just makes sense for the individual seeking disability pay, it makes sense for our economy! By providing supplementary income to those with disabilities WITHOUT requiring that they be completely incapacitated, we support actively working, tax-paying individuals and discourage fraud! 

Here’s the tricky part though…as disabilities increase, there are two potential end results for rating. If an individual has a combined 100% service-related disability, (because their condition will either result in premature death or incapacitate them), that person can either work or not work. Employment has no bearing on their rating or compensation. On the other hand, if gainful employment is restricted or not possible because of an individual’s service-connected disability, they are rated “IU” – individual unemployability. If someone with an IU rating becomes employed, the IU is discontinued. Check out this forum for an interesting discussion regarding 100% employable vs 100% un-employable ratings.

I should note that this discussion and my thoughts on this matter do not in ANY WAY diminish the respect I have for our service men and women. They put their lives on the line, leave their families behind and risk everything to protect our freedoms. I believe very strongly that we need to adequately compensate each and every vet for injuries sustained during active service. In many cases, it’s clear that we need to improve how we care for our vets when they come home.

I do, however, have some mixed feelings about the rating system. The IU rating makes sense. If you are 100% disabled, then it follows that you would be unable to work and that your compensation should reflect that. However, if you are 100% disabled but still employable, how is that 100% disabled?

One last note about VA disability. If a vet is qualified as disabled by the VA system, he or she can also apply for Social Security Disability Income (SSDI) IN ADDITION TO their VA disability income AND have their claim expedited. I have some very mixed feelings about that, however, I’ll move on to get to my point…

This brings me to the reason that yes, I did drop off the grid for an entire year, then suddenly come back talking about skin care. Our SSDI System is broken. It is flawed, poorly designed and terribly administered. To begin with, the SSDI system does not recognize or compensate partial disability. One must be deemed 100% disabled and unable to work at any job in any capacity. The Social Security Administration defines being disabled with the following criteria:

  • You cannot do work that you did before;
  • We decide that you cannot adjust to other work because of your medical condition(s); and
  • Your disability has lasted or is expected to last for at least one year or to result in death.
This is what ONE year of medical records from ONE doctor looks like. Now imagine 13 years with MANY doctors....

This is what ONE year of medical records from ONE doctor looks like. Now imagine 13 years with MANY doctors….

At first glance, that seems to make sense, right? You can’t do your old job; you can’t do any other job; your condition is a long-term thing or is going to kill you. Yep, that would definitely be disabled. But what about those who are so severely limited by their health that they can’t work enough to support themselves or their families or even to qualify for health insurance? And even if someone is 100% disabled, what is required to prove it? To examine these questions, let’s explore what applying for SSDI looks like. There are forms. LOTS of forms. Medical records. Statements from doctors. Examinations.

Here’s how it typically goes. You apply. You wait 3-6 months. You get denied. You submit your first appeal, called a request for reconsideration. You wait another 3-6 months. You get denied. (If you’re lucky, you still have some means of supporting yourself and you’re not homeless…yet.) You submit your second appeal and wait (on average) one to two years to get a date to appear before an administrative law judge (ALJ). Maybe you get approved, maybe not. Approval ratings vary state to state, examiner to examiner and judge to judge. Initial claims are approved at rates of anywhere from 5% to 35% depending on the state and the claims examiner. To put this in perspective, let’s assume that 100 people apply for SSDI benefits and 100% of those denied follow up with every available appeal (not nearly this many actually do). We’ll shoot for the middle and say that about 20 individuals are actually approved and 80 are denied.

Not disabled eh? Yeah....I'm sure that ALL of my doctors are wrong about that...

Not disabled eh? Yeah….I’m sure that ALL of my doctors are wrong about that…

Approximately 10% of claims that are appealed at the reconsideration level (first appeal) are approved. Looking at our sample group, that means that 8 more people are approved (28 total, so far) and 72 are once again denied. Roughly 50% of claims appealed at the next level and presented in front of an ALJ are approved, (though that number plummets for individuals who do not have a lawyer). So 36 more individuals eventually are approved, resulting in a total of about 64 individuals.

Does this mean that barely more than half the people applying for SSDI are actually disabled and cannot work? NO!. Absolutely not. There is an enormous amount of subjectivity at every level of decision in this system because humans are making the decisions. Disability Secrets is a great site that offers some interesting insight into navigating this complicated system and improving your chances of being approved. 

If you add up all that wait time, you quickly find that getting your SSDI claim approved will likely take 2-3 years. WOW. OK, so if you really are completely disabled and cannot work and you have to wait 2-3 years to MAYBE get assistance, what happens to you during those 2-3 years?

For some, welfare (Temporary Assistance for Needy Families – or TANF) is the answer. But here’s the catch – only people with children (or pregnant women) are eligible for TANF. So what happens to the single adult with no children? If, like me, they are lucky enough to have family that can support them through the SSDI claim process, they burn through their checking, savings and retirement accounts and rely on help from family. But what about those who do not have family that can support them? A lucky few live in towns/cities or counties that have assistance programs. But more often, they end up in shelters, on the streets, or dead. This is a flawed system. We have left a giant void that for many, becomes a bottomless pit that swallows them whole.

Now let’s go back and look at the (non-military) partially disabled individuals. Many people live with significant impairments but do not meet the criteria for SSDI. There is no support to make up for the fact that they cannot work full time, thus, they end up working part time and that of course, means no health insurance. Without health insurance they cannot adequately address their medical needs and likely worsen their existing conditions. In MANY cases these individuals’ health status declines to the point that they can no longer work at all. They lose jobs. Their credit tanks. They lose their homes. They end up on the streets. This is no exaggeration. I would, without question have followed precisely this path had it not been for my amazing family who has supported me through this process. But I am among the lucky few who have loved ones willing and ABLE to do so.

To be perfectly honest – knowing what I now know, experiencing what going through this system is actually like, and how LONG it takes, I would probably have done what many do…I would have started my claim a long time ago. Before I was truly unable to work. This, of course, is called Social Security Fraud.

We need to fix the SSDI system. We have a good working model of a system that recognizes that individuals who are partially incapacitated and cannot work enough to support themselves should qualify for partial assistance. The VA system, even with all of its flaws, is logical. It makes sense. It doesn’t leave people behind the way SSDI does. We also have to look at the fate of those single adults applying for SSDI, waiting years for their claim to be approved. We have to either amend our welfare system to extend it to those individuals, or create some sort of stop-gap measure to act as a safety net over that bottomless pit.

I have been waiting one year and four months since I initially submitted my claim. It included the initial application, all of appeal scrn shotthe required forms, examination by a SS doctor, and more than 13 years of medical records supporting my claim and several highly distinguished doctors unanimously affirming that I cannot, and have not been able to work for a LONG time. But I was denied at the first level. And denied at reconsideration. I have been waiting 8 months for my hearing with the ALJ and still have no date. We have submitted two requests for an expedited hearing based on “emergent conditions” (this request essentially outlines why it is imperative that I have my case heard immediately due to dire medical, insurance and financial circumstances). But still I wait.

My family has supported me financially and emotionally for the last several years. My gratitude to them is matched only by my feelings of guilt and my desire to be able to go back to work, to repay them, to live independently and productively. I have no idea if the judge that eventually hears my case will approve my claim or not. I know that my medical condition is clearly disabling and the physicians who care for me are unanimous in their testimony that my claim must be approved. I know that I am less likely to be approved because of my level of education. Those who have not completed high school are most likely to be approved. Those of us with bachelors and masters degrees (and mountains of debt!) – same disabilities, lower rates of approval (based on the assumption that we could qualify for additional types of employment). Great.

So – this is what I have been doing for the year that Lost On A Horse was silent. I have been fighting, clawing, struggling, begging – for assistance that I wish with all my heart that I did not need. I was terrified to write. Terrified that I would damn myself to denial by a system that is supposed to support people in my situation. Terrified that someone might found out that I was having cutting-edge surgery that could potentially lead to improvement in my health. Terrified that someone might find out that I was continuing to BLOG, to advocate for myself and the untold numbers of chronic pain sufferers, and use it as evidence that I could work, being completely unaware of what it takes for me to do this. That for some, typing up a post like this and inserting a few pictures might take an hour or so rather than days. But my name is attached to this BLOG. And the folks at the SSA dig. They dig deep. They even go so far as to surveil applicants or those already awarded benefits to find any clue that someone claiming to be unable to work actually can do something. Anything…because SSDI is, after all, ALL OR NOTHING.

Translation: "Don't bother - if you think coming to the office will do any more than staring at your computer, you're more of a fool than we thought!"

Translation: “Don’t bother – if you think coming to the office will do any more than staring at your computer, you’re more of a fool than we thought!”

Recent events though have persuaded me to come back. To speak up. To revive Lost On A Horse. So here I am. There is much to say, stories to tell, questions to ask, advice to share. But this is enough for today. Ok, realistically, for the last several days. I can’t just sit down at the computer and type out a post this long all in one shot, even when it’s already written on paper. A heavy note to return on, I know. But important. The last year and a half of my life has had a dramatic impact on my view of what is important, on politics, relationships, health…just about everything. So it’s time. Time to get back on the horse and share hard-earned lessons, and most importantly…HOPE.

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