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One year ago 

One year ago, I was sitting in my favorite coffee shop with my mom, drinking delicious lattes from ceramic cups. Despite the intense summer heat in Hawaii, I was always in the mood for a Brue Bar latte. That day was extra special though, a significant moment in my medical history. It was the day I received my approval letters from Social Security. 

It had been just under two years since I had filed for federal disability. Two years, that to me, seemed like a lifetime. I still shudder at the thought of how broke I was during that time, how desolate. I lived with two sets of generous friends, who allowed me to stay in spare bedrooms for months on end as I waited. I lived on a very small state disability income of only $248 a month. That had to cover bills, medications, transportation, and incidentals. I became the queen of budgeting. Even my pain therapist said I could draw oil from rocks.

So, one year ago, when I received the letter telling me I was going to finally get enough money to live off, money that would help pay for rent, groceries, medical supplies, and more, I was quite overwhelmed. I cried, right there in the coffee shop, in front of my mom. My mom was probably the only person on the planet that understood the significance of these letters to me. She took a picture of me from across the table, one shaking hand holding the letter, the other wiping tears from my eyes. I was still very overweight from the continued steroid use at that point, and I was heavy in the face. It’s probably one of the most memorable and significant pictures of myself that I have. 

One year ago, I received Social Security benefits. A lot had changed since that day, and I’d like to think that it had to do with the positive effect this has all had on me. I’ve dropped a significant amount of the steroid weight, and I recognize myself in the mirror again. I’m in a new county where I’m finally getting really good medical help. My moods have changed, and I’m more often happy than not. 

One year ago I received a letter that would change my life. It did.

Why them and not me?

Earlier this evening I was talking with a friend about her dislike of her current living situation. (For anonymity purposes, we’ll call my friend Jane,  and her landlord, Sarah.)
Jane had recently moved out of her parents home and was “couch surfing” at a mutual acquaintances house, until she could save enough to rent a room somewhere. One of her chief complaints of her current situation was that she thought her temporary landlord, Sarah, was lazy and treated her like a maid, often refusing to take out the trash and pushing that chore on to her daughter or Jane. I asked Jane if she was contributing financially to the household while staying at this house and she said no. Realizing the reality of the situation, I advised Jane to not over think the issue, and as a guest who wasn’t financially helping out it was wise to help in any other way she could. In turn, her chores around the house could be seen as a form of rent. Jane did not agree.

Having seen Jane in a similar scenario before, and not willing to lend a hand then, I wasn’t that surprised that her unwillingness to help out hadn’t changed over the years. I reiterated that it was the polite and right thing to do for someone who was guest in another’s house, and that she should be grateful that she had a roof over her head at all. Especially since so many people in this state did not.

While agreeing that chores were something good to do (though I doubt it would be followed through with), she complained that it wasn’t fair that she should do everything while Sarah did nothing. Stressing that it seemed like all that Sarah did was laze about the house watching television.

The thing about being sick, especially with a pain disorder, is that you’re not always feeling up to house cleaning. More often than not dirty dishes start to pile in the sink, the trash starts getting on the full side, and excess kitty litter starts crunching underfoot. Family, friends, and even houseguests may not realize how exhausting just a trip to the dumpster out back can be if you’re exhausted, or how scooping kitty litter can seem like the most daunting task in the world if your wrists and hands are swollen.
I reminded Jane of this, but Jane was ready with a response to everything, she’d brought her complain game and was ready to play ball. Jane then lamented that even so, she shouldn’t have to do all the chores if no one paid rent at all.

This brought my advice to a screeching halt. Wait, what do you mean no rent? How could she rent a house and not have to pay rent? In Hawaii no less!
Well, as it turns out, Sarah was lucky enough to claim free housing from the state. A whole house for her and her daughter. A house!
My cheery disposition over Jane’s “ordeal” started to fade as I once again became enraged with my state’s cracked system.

How is it that someone who doesn’t qualify for food stamps instead be rewarded free housing? I was told several times (after many long hours on the phone with the state) that free housing only came to people who had severe disabilities or were supporting more than 3 people while unemployed. Well, Sarah, like so many others that reaped these benefits, did not hold that criteria. Since when did Fibromyalgia, and a mild case at that, warrant not paying rent? And how can someone who doesn’t fit the bill for food stamps, which by the way aren’t at all hard to get, still be able to sign up for housing benefits?
For the record, I’ve been receiving food stamps since the month after I stopped being able to work, two years ago. But when I applied for Section 8 housing (our states version of housing benefits) I was told my disability wasn’t severe enough and there weren’t any openings for at least four years anyways.

Enter about 10 swear words and expletives here _______.

Now at the end of the day, my frustration is not at Sarah. I don’t know her whole story, nor what she went through to get the benefits she now has. She indeed may qualify for them through a loophole or an unseen disability or personal issue. While it may appear as if it started there, my anger and frustration is not with her. It’s with our extremely flawed system.

I have been waiting for almost two years now to have a hearing scheduled for Social Security, just so my case can be seen. Just seen by a judge, not even granted. That’s how long the waiting list is for judges to hear new cases. My pain psychologist once told me that each Social Security case worker has anywhere between 1200 and 1500 cases each to go through. Each!! And according to my sources there are about 15 case workers actively reviewing cases, so you do the math!

For two years I have waited patiently to be scheduled for a hearing, even eventually hiring an SSI attorney to help the process go smoother and faster. Still no word. And in the meantime, I receive a small monthly allowance of food stamps to help with groceries each month. And that’s it. With no income I don’t have a way to come up with rent, bill money, or aid for medical treatments. All of that hangs on the big IF I qualify for Social Security.

For those that know me, I got lucky with donation raising so I could rent a small apartment, though that money has dropped off significantly in the last three months. And now all I can do is hope to be given a chance to plead my case to a judge. And hope that the judge sees all my medical records, emergency room visits, chemotherapy sessions, unending doctors trips, medications, and severe medical conditions, and WANTS to help. That’s all I can do. Wait.

Meanwhile, the state is giving social security to BMW driving women with newly lacquered nails, and Prada handbags, who shop at Costco with their EBT card and buy trays of filet mignon and pounds of shrimp for their bbqs. Trust me, they exist. I’ve seen them. What’s worse? I’ve heard them. Bragging about what they can get from the state.

Ugh. Makes me sick. While legitimately sick people are out there suffering because the state is “helping” too many people already. Or unemployed mothers with mouths to feed who live in tents at Kakaako Waterfront because there are housing shortages and those who can’t pay end up homeless while healthy, lazy people who don’t want to go back to working, enjoy their housing benefits.

The system is whack. The system is corrupt. And all we can think and say is “Why them? What do they do that gets them what they want?”

Well at the end of the day I can wonder all I want, but I remain who I am. I have no guilty conscience because I don’t use people or the system. I wait patiently for my turn, to show them who I am and why I need help. I have to trust that one day someone will see my case and help me. I just have to have faith. It’s hard. But I’m not me without it.

 

 

 

 

If you like to help me with raising donations to pay for my rent, bills, expenses,  please visit my page here. Thank to all who have supported me through this new part of my life.