Saturday, June 25, 2016

The SSDI Dilemma
    One of the hardest things any American who sufferers from a Chronic Disease will ever have to deal with, especially with all the election chatter about a bankrupt system, is the idea of applying for SSDI or Social Security Disability Income. SSDI is money that is set aside out of everyone’s paycheck into a pool to be distributed to people who can no longer work due to disability before retirement age. You have paid into it. I have paid into it. My children are paying into it as we speak. So why is it so difficult to start the process of accessing a pot of money set aside for this very reason, the eventual inability to work, that we all paid into? It’s our money. The government took it from us to afford us this protection and income if the time came when we couldn’t work and were too young for Social Security itself. It should be easy to request and utilize our share right? Apparently not. You see, applying for disability isn’t really that hard. The forms are available online and they are very straight forward. It’s gaining the mindset that is difficult. The ability to accept the idea that you can no longer work due to the effects of your Chronic Disease doesn’t come easily. Imagine this: You started your job at a young age. It has worked out well over the years and become a career for you. A career you built by making decisions and moving into departments that specialized in things you were passionate about. You don’t even mind staying late or being on call. You love your job and you are happy doing it. But you are also sick. You have a degenerative Chronic Illness that is hard to predict. You need special accommodations to do your job. And that’s OK for now. There’s still so much you can do. But time passes and your disease gets worse. Working becomes tiring and you begin to take more time off due to flare ups, illness, and the need for your body to recover after some of these long days. And there’s pain that now requires stronger medications. And stronger medications bring side effects. You can still work though. But as the disease continues to take its toll, going part time begins to look like a good option. It’s the best of both worlds, but can it last? That becomes the voice in the back of your mind. You want to work. You love to work. But working is taxing on a body that fights itself. Working is now exhausting and your medications don't help that. And when it finally gets to the point that your job pushes you beyond the limits of what your body can tolerate, you have to make the decision none of us likes: Can I keep working or do I apply for disability? Here’s what is really at stake. I haven’t met one person yet that wanted to give up working. So we wait too long before we finally apply. To us, losing our jobs is losing a piece of who we are. And being Chronically Ill, we already feel broken and less than to begin with. Which brings us to real reason applying for SSDI is so hard. Simply put, it’s the word disability itself. We have to admit we are now disabled. Enough so that we can no longer find a way to make our careers work and sitting at home is the better and healthier option. And who really wants to admit that? Our society is so rooted in being someone, producing something, being important somehow that even stay at home moms are given a hard time. It does not bode well for a young, chronically ill, Sjogren’s patient who can barely walk and whose brain fog has become so thick it can be cut with a butter knife. It doesn't help that the constant debate that swirls around welfare recipients includes the words "lazy" and "entitled". SSDI may not fall under the true welfare umbrella, but most Americans don't understand that and the fact that many chronic and autoimmune diseases cause invisible disabilities, the labels go downhill from "lazy". Given that's the current atmosphere in the country, it’s incredibly hard to accept the label ‘disabled’. I won the right to use that label in October 2015. But I still have trouble accepting it. In my mind, I am still useful. But there is no current job I can physically do. So what use do I actually have? That’s the real quandary behind 'disability': Did our job define us then and if so, who are we now that we are 'disabled' and can no longer do that job? I feel lost a lot. I can no longer help the people I did while working. And I loved helping them. I am considering volunteering. But I don’t know how much activity I can tolerate. And how would volunteering be different from a job? Most days, I feel like my life doesn’t start until my husband and kids get home. But I don’t want to feel that way. I want to be productive. I want to matter. I don't want to be the label I have. This becomes the basic fear when applying for disability. I for one still struggle with it. Yes, I am disabled. Yes, I deserve the $852/month I get because I worked and I paid into the system with every paycheck I earned. But I am not actually doing anything to earn it now. But then again, I am also not worthless. No one is. There is just a period of time between gaining disability and moving forward in your life that is very dark and scary. Change is always hard and labels such as ‘disabled’ don’t help any. They can keep you down when it’s time to reboot. It’s OK not to have a plan for awhile. Take time to discover an inner passion or to rediscover an old love. Take chances. Experiment. Disability isn’t the end of being productive, we just have to find a new way to fulfill that goal. And we will. I have yet to meet a person who only had one skill in life. Your new skills may be hidden, but I’m sure they’re there. Now is your time to find those hidden talents and make the most out of this new chapter in your life. I’m writing again. After 28 years, I’m writing again! And It was accepting my disability status that allowed me to do it.

Sunday, June 12, 2016

Where Is Our Humanity

    Today has been a hard day. The news of another mass shooting is absolutely devastating. Especially when it was orchestrated against a specific group of people. To think that anyone could be a target because another person decides that their very existence is offensive and they deserve to be eradicated is frightening at best. What has happened to us? Where is our humanity? Because right now, I look at the world and I just don’t see it. And I want to know why.
    To start with, the word human literally means “a human being, especially a person as distinguished from an animal or a machine (or alien)” or “relating to characteristics of people or human beings”. OK. So not truly helpful. Or is it? A human is a person as distinguished from an animal.  Simply put, ALL of us are human, and ALL of us are humans. And although we love them and several seem to have human characteristics, our pets and other wild creatures, are not.
    But beyond that, the definition of human seems to be missing something. I read through several different dictionaries as well as looking it up on wikipedia and not once did I see a truly detailed description of a human. Aside from the term bipedal which means having two feet, no other description is given.
    So why is this important? Isn’t it obvious? There is no other physical characteristic necessary to be deemed human. And our society has forgotten that. We have wadded up the defining characteristic of being human, spit our tasteless gum in it, and tossed it on the side of the road.
    Instead, we have deemed it necessary to add to the definition of a human. We have added color to the definition as evidenced by slavery and the idea that blacks were not human. We have added gender to it as evidenced by the fact that women and young girls can be bought and sold as property, which definitely is not human. We have added religion and ideology to it as evidenced by the increasingly savage actions of groups such as ISIS against those who don’t believe as they do. And we have added sexuality to it as evidenced by the simple fact that LGBT persons referred to as animals, and slaughtered as such, just for expressing who they are. Society has spent months arguing over who can use what bathroom for crying out loud! But none of the above is actually relevant.
    What is relevant is abundantly clear in the short, simple definition above. “A human being, especially a person as distinguished from an animal or a machine (or alien)”. Period. Putting us all in the same category and effectively rendering us all free from discrimination.
    So I ask again: What has happened to us? When did we forget our humanity and go on the offensive against other humans for being HUMAN? Why is this even acceptable? And when will there be enough offenses against other humans for us to realize what we have lost? Because we have indeed all lost something. And unfortunately, what we’ve lost is the very thing we think sets us apart from the animal kingdom in the first place. But until we put down the labels and definitions we as society have put on our own humanity, we will never reclaim that humanity. And I know this is all easier said than done but it really shouldn’t be. It should be as simple as the definition of human itself. But events like today only serve to show how far away we are. And that is the real tragedy.