Dear friends who are less melty than I,
As you know (or don’t but soon will) I am quite transparent about my life because I am a person, and being one includes being honest about all the good, all the bad and every single bit in between. It’s still harsh sometimes to admit the more extreme challenges I go through. For example, it’s distressing for me to admit that I constantly have crying episodes, breakdowns and panic attacks. Part of it comes from the fact that I have PTSD, depression and anxiety. Part of it comes from the fact that my life has always been trying. All of it comes the fact that I am simply me, attempting my best to make it through the life I have been given with hardly any choice.
Earlier tonight I broke down for the same reason I often do. While I want to fight through it all, being chronically ill, disabled,and just about broke with no family save for my sister and my Alzheimer’s ridden grandmother is a massive amount to take on. Now and then the stress of it all crushes me, and I fall apart, but I always seem to come back together. With every explosion of my emotions and every repair of my soul, it never gets easier to be who I am.
I’m absolutely one of those people who cries whether they are angry, sad or scared. Any negative emotions usually come out of my eyeballs in the form of seawater. So, tonight I began to cry even though I wasn’t sad. I was frustrated beyond compare, a raging, angry fire in my heart, igniting my words as they were arriving faster and faster from my lips. My tears increased their speed as well as I spoke words I’ve spoken so many times before:
“Every moment of my life I’m sick and in pain, and on top of it that I’m told my government doesn’t care about me because I’m ill and can’t pay my way through life. I’m told by so many to move to a different country, but others in different countries struggle as well. At the end of the day it seems that nobody really cares if I live or die. No one believes that I deserve to have a beautiful life because I am different and I am not like everyone else, and no matter where I go, I just don’t belong.”
I know that all sounds dramatic and bleak, and despite being sort of an asshole sometimes, that usually isn’t my style. But in certain times it truly seems like my reality. While fighting for disability, Medicaid, and other assistance that I’m scrambling for because I have no family and was too sick to have an average life with average jobs, I have obstacles thrown at me from every direction. Every single time I feel that I am making a step towards a better life, I’m floored by more insane rules, requirements, and wait periods. My disability lawyers told me themselves, “the government doesn’t care about people who are disabled.” Even before I met them, I felt the truth of that statement every second.
The government riddles us with requirements and fiery hoops to jump through before we even get an pinch of help. When we finally do get help, we’re put into a situation that literally prevents us from ever being able to move forward so that we no longer need that help; we’re practically forced into poverty and complacency with the minimum requirements to live. Then we’re told we should make it on our own, yet most places have no desire to hire someone who is chronically ill and disabled, and those who do pay us hardly anything. If you have a family to support you emotionally and financially, it’s significantly easier to get through it all. If you’re like me, and don’t have a safety net or a back up to aid you, every day feels like trying not fall off a very thin and weak tightrope, and life becomes a macabre circus – everyone gawking and laughing and sharing their opinions, but no one doing anything to help as those like me struggle to keep from falling.
I made this blog to be a spark of hope in all the darkness of illness, but I feel part of that means acknowledging the darkest parts. This is one of those darkest parts. Being disabled and chronically ill is tumultuous and it is made even worse when a person does not have nearly as much support as they should. I get so fucking angry about my situation and I feel entirely helpless which only makes me angrier. I want to scream and punch things and lash out like all the punk kids in mosh pits that I grew up with. But I could never be one of them, for if I scream too loudly my throat will ache and I’ll lose my breath. If I punch something I would hurt myself because I’m more fragile than others. I can’t jump and lash out, because my body doesn’t allow it. So what do I do instead? I cry. And I write.
I put a good deal of effort into not getting too involved with current events, politics and the like on my blog because it is terribly easy to get carried away with those subjects, even more so on the internet, and they aren’t the point of why I write. But it isn’t a secret that our medical system is deeply corrupt, and has been for far too long. I know that there are many people fighting to change it, and I’m aware change takes a long time. But until that change comes, many of us are suffering. Millions of people fall between the cracks. And I’m one of them.
Every day I’m terrified that my health will take a terrible turn that I cannot financially handle. Every day I wake to the disheartening fact that I can’t even get help for all the illnesses I already have, and it’s honestly depressing. As I fight for help as much as I’m able, I come across articles, reports, and personal experiences that scream louder than I can bare, “nobody cares about you because you are different, poor and sick.”
I don’t know what I am going to do to make my situation better and some days it seems there simply is no light at the end of my very dark tunnel. Others in my situation have every right to be angry, to scream and to cry. If you’re out there in the ether, reading this to distract yourself from the fact that your life is heavier than you can handle, know this, My darling friends- I care.
I’m not a politician. I’m not a millionaire and I don’t have any influence on our fucked up medical system. I’m just one girl writing a blog about the ridiculously hard game that is my life. I’m strange and I’m sick and I am far from perfect or influential. But I want you to know that when no one else cares, I do. I wish I could do more than just care and pour my heart out into the ones and zeros that make up the internet; and hey, it’s extremely possible that one day I’ll figure out a way to do more. I’d love nothing more than to make a real and permanent difference.
But for now, I’m just one of the millions of people that suffer and hurt, and feel as if they’re being punished for the illnesses we never had a say in receiving. I can’t lie and tell you that I’m not scared or that I have a perfect plan to get out of the deep blackness I’m currently in.
But I hope you know that if you’re in a different but equally awful blackness, you aren’t alone. For every meltdown I have I know there are probably millions of people having them too for similar reasons. It doesn’t make anything better at all; but I hope in the darkness, if there is a light, it’s your computer screen with a tab open to this silly little video game health blog, telling you that I can’t do much, but I do care.
I’ve seen all the mountains,
Yes, I’ve seen all the trees,
I’ve seen all the water,
But nowhere compares to home.
Home, let’s go home.
Home, let’s go home.