Yes, I’m one of them

December 9, 2015

I was talking to some friends about some tough decisions I need to make about benefits. One of them said, more than once, that I might need them for a while, but those benefits aren’t meant for my “demographic.” They’re not for people like me. But the thing is, they really are.

I understand why she said it. We both grew up in middle class families in the same middle class neighborhood. We both went to college, then graduate school. We both got middle class jobs. We followed all the “rules” and now we’re supposed to have our happy middle class lifestyles. She is a stay at home mom. Her husband earns a very large salary. She has that middle class lifestyle.

I don’t.

There’s an idea that benefits are meant for other people. The people who aren’t middle class. The people who don’t have jobs. Well, as it turns out, that’s me.

Those benefits are for people with physical and mental illness. People who can’t work. Yup, me again.

People think they’re for people who are older. But they aren’t. They’re for people of all ages. Including people in their 30s like me.

My friend means well. She tries to understand. She is one of the only people in my life who knew me before I was sick, and she understands my health problems better than most. But she can’t accept that it’s permanent because she doesn’t want to. It hurts her to think of me in pain. I get that. I feel the same when someone close to me is in pain; I pretend it can’t be serious or permanent, even when it obviously is. That’s how she feels about me.

But it doesn’t change things.

So yes, I’m one of those people. The other ones. The ones who aren’t us. Except sometimes they are. Sometimes they’re one of us. Sometimes we’re one of them. It doesn’t matter if you grew up rich or poor or somewhere in between, whether you got advanced degrees or didn’t finish high school, you can be too sick to work. And when that happens, benefits like food stamps, Medicaid, and section 8 are helpful. Even when we don’t want them, we need them.

Like it or not, we’re one of them.

6 Comments | Expectations, Frustration, Insensitive, Isolation, Limitations, Politics, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , , , , | Permalink
Posted by chronicrants

Which is worse: knowing or not knowing?

December 2, 2015

My surgery was just over a month ago and for me, the worst was not knowing what to expect. Not knowing if it would work out ok. Not knowing.

For me, that’s always the worst.

But I was talking to a friend yesterday and she said the opposite. She has a surgery coming up that she’s had before and for her, the worst is knowing what to expect. She knows just how bad it could be.

To know or not to know- That is definitely the question.

When I don’t know my imagination runs wild, and what I come up with is always worse than the reality.

But what if it wasn’t?

Which do you prefer? Do you want to know what to expect or would you rather not? When you see doctors, do you ask them for ever detail you can think of (like I do) or do you get only the most basic of information, preferring not to know in advance?

2 Comments | Decisions, Expectations, Healthcare, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Answering “What’s new with you?”

November 29, 2015

What’s new? It’s a simple, standard question. We all ask it and have it asked of us dozens or hundreds of times each year. Sometimes it’s like saying “Hello” and the asker doesn’t expect an answer. But sometimes they do. And sometimes, the answer is complicated.

I’m not talking about health stuff here. Well I am, but not directly.

When someone asks “What’s new?” sometimes what’s new is bodily issues. That’s probably true of anyone with a chronic illness. But sometimes it’s health-related stuff. When someone asks “What’s new?” should I tell them about my uncertainty about Section 8, fights with health insurers, problems with doctors, and about how I’m running out of room to store medical supplies at home? Should I explain my concerns around earned income and Social Security or the way that Medicare and Medicaid work together to cover costs but sometimes they fail, even when it means having to give a 20 minute explanation of the entire system just so it makes sense?

It’s like back in the days when I used to work. If someone asked me how work was going, I’d say it was good or bad, or maybe tell a funny story, but I wouldn’t talk about the boring issues with vendors or the technical aspects. I wouldn’t use terminology that I first had to define.

And that’s how it is with a chronic illness. Even when I’m not talking about my actual health, it’s hard to answer the question because so much of what’s happening in my life is health-related in one way or another.

So now I’m asking you: How do you answer the question, “What’s new with you?” Please let me know in the comments!

12 Comments | Educating, Expectations, Frustration, Isolation, Rants, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , | Permalink
Posted by chronicrants

Freaking out about the possibility of Section 8

November 27, 2015

Life has never been easy or predictable. At one point I thought it was, but back then I assumed I’d have my PhD, be married and have kids by the time I was 30. Now I’m well past 30, I haven’t spoke to that guy in 13 years, there are no kids, and I never did finish the PhD. I have no regrets. I’m just saying, life is unpredictable.

And in case I dared to forget it, the last few hours have reminded me all too clearly.

Life has been less certain than ever since I left my job 4 years ago. I can’t believe it’s been that long. Still, after a ton of work and effort, research, new doctors, new treatments, and fighting with insurance companies, I finally reached a point where I felt I might be able to do a little part time work. I was nervous, but also hopeful. It would be so nice not to have to worry about being on benefits that didn’t cover all the bills.

Today I did some work on that new business. I was feeling really excited about it! At 4pm I was jazzed, telling my mother all about my new plans and progress, outlining some next steps for myself, and imagining the possibility that this might actually work! At 5:30 I decided to check the mail. At 5:35, everything changed.

I had an unexpected letter.

I’m near the top of the waiting list for Section 8, so they want to start getting my paperwork ready and have an interview with me. Holy fuck! What just happened???

For those who don’t know, Section 8 is a housing voucher program. If you earn less than a certain amount, you’re eligible. Typically, you then pay 30% of your rent and the government pays the rest. There aren’t a lot of vouchers and the waiting list is long. When I signed up, I was told the wait was 3-4 years, so I put it out of my head. Whenever it popped back in, I reminded myself that I had a long wait and shouldn’t plan for it. And now, a year and a half later, it seems like it could soon be a reality. Sounds good, right?

Of course, like with anything, there are a few catches. For one thing, if you start earning more, then you lose the Section 8, and I don’t know what happens then. Would I have to move? And to use it in the first place I might have to move, and my choices would be very limited. Not all landlords accept Section 8 vouchers and I don’t know if mine does. Many don’t. Then there’s the problem that there are rental limits, and they’re pretty low for this area, so that makes it significantly harder to find a place.

Of course, this is just what I’ve heard and read. The truth is, I don’t know a lot. I have so many questions, but I got the letter at 5:30pm on a Friday, of course, so I need to wait all weekend before I can call and ask any of them.

So now I’m wondering, is this a good thing? It seems like it should be a good thing. If I’m doing the math right, this would mean I could almost cover all of my bills every month! There would be a small gap, maybe $50-$100 per month, but I could handle that. I get paid for small jobs here and there, and I get birthday and Chanukah checks, so I’m sure that wouldn’t be a problem. And would it be amazing to not have to worry about money?!? Ok, sure, I still wouldn’t have anything extra. It’s not like I could suddenly start eating out more, buying more clothes, or traveling. But it’s not like I really have to do any of those things anyway. So…. maybe this is good?

I’m nervous. I’m so used to things going wrong that it feels like there must be a big catch here that I’m not seeing yet. But then, what if there isn’t….?

If you’re on Section 8, what has your experience been like? What questions should I be asking? What should I know?

 

3 Comments | Expectations, Politics, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

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