The sad math of getting off benefits

March 15, 2015

Once upon a time there was a woman who worked most of her life. She babysat at 12, worked summers starting at 14, got good grades in school while doing a work-study program, went to college and graduate school, held many jobs during school and held more after each graduation, and 3-15-2015 1-59-07 PMalways did her best. One day she got sick. She was too sick to work. The government said they’d give her a small amount of money (after much fighting and pleading on her part.) Some people said she was lazy for not working harder, but she knew better. She was just too sick to work. Besides, all those years that she worked she paid into the fund that was now paying her. She worked on improving her health. One day she felt that she was ready to earn a small amount of money. She wondered what would happen if she ever wanted to earn her own living again. So she did the math….

I can accept that I might never be able to get off of benefits. I don’t like it, but I can accept it. My health has improved and stabilized to a point that I’m happy with. Yes, I would like to feel better, but if I never do, I can manage at this level. The thing is, that could be a problem financially. Thankfully, 20120809_220808social security disability insurance (SSDI) allows recipients to earn up to a certain amount each month while keeping benefits. I believe right now that amount is $1050. If I could earn the maximum, I could get by. Barely.

But the truth is, I’d love to get off of benefits if I could. I have always been self sufficient, and I would like to return to that. I prided myself on my independence. On top of that, I have control issues. It’s no wonder, when the biggest thing in my life – my body – is so out of my control. I hate the idea of relying on the government for my income. As I mentioned the other day, some politicians have suggested cutting SSDI by 20%! I’d much rather control my own income and larger financial situation. Sure, a boss can always fire me, and working for myself is no guarantee, but it still feels safer. That’s how control issues work.

So I decided to do the math, just out of curiosity. It started slow: how many hours each month would I need to work in order to earn $1050? Well, at $10 per hour I’d have to work 100 hours. That’s 20 hours per week. Well, that’s not happening any time soon. But I could probably earn $20, so that’s 50 hours/month. Ok, that’s more like it. I might be able to manage that in another year or two. But I can earn more for some of my skills, like my financial work, so maybe I could average $30 per hour? Somewhere in there I’d lose a few of my benefits, like fuel assistance and food stamps, but I’d more than make up for that. I played around, and felt ok about the options.

Then I started doing the math on what it would take to get off of all of the benefits. And that’s where it all fell apart. First, I’d have to replace my SSDI income. Ok, that’s tough, but I might be able to manage that at some point. Then I’d have to pay for health insurance, since I’d have lost both Medicare and Medicaid when I started earning more money. Well that’s stretching it, but I could still manage. Maybe. Eventually. It felt tight, but doable, until I remembered: taxes! SSDI income isn’t taxable, and I doubt that $1050 per month would be taxed much, if anything. But at these new income levels, I’d have to pay taxes. When I add it all up, I figure I’d need to earn at least $4000 per month. At least. And that’s just to break even!

So I can earn $1050 per month while getting SSDI, or I could earn at least $4000 per month, and the two would be equivalent from a financial point of view. But one way I’d have time to take care of my health and the other way I wouldn’t. Realistically, I just can’t see working full time again health-wise. It would have to be part-time work. And as much as I want to get off of benefits, it doesn’t seem worth it if I’d be breaking even, so I’d need to earn more to make it worthwhile. And that puts me back at my old salary (which was just slightly over $4k/month.)

It would be nice if there was a gradient of some sort. Like, if I earned $1050 I’d get full SSDI, and if I earned $1200 I’d get $150 less than full SSDI. That would be a great way to transition. But as it stands, it’s all or none.

I’m not saying it’s impossible that it’ll ever happen, but it sure feels unlikely that I’d be able to earn my old full time salary while working part time.

If you’re on benefits, have you ever considered getting off of them? Have you tried? How do you feel about it? Please share your thoughts and experiences in the comments.

I miss having the security of a steady liveable income

March 10, 2015

Sometimes I forget what it was like to have a steady liveable income. My new “normal” has become so ingrained, it’s easy to think that’s how it always was. Then I’ll wish I could buy a new sweater, for example, and I’ll remember there was a time when I really could buy a new sweater any time I wanted to.

This is one of those things that can be hard to understand until you live it. Politicians talk about cutting social security disability payments because they see the huge amount the program costs overall. They don’t consider what it’s like for an individual to have to actually live on the average payment of less than $1200 per month. (Full disclosure: my payments are above average. Of course, the cost of living in my city is also above average. I haven’t done the math to figure out if the ratios are the same or not.)

Of course, it’s all relative. There are people who aren’t on SSDI who only earn that much. There are people who earn $150,000 per year and are in debt. The former has their own set of issues that need addressing on a federal and state level. The latter has options, though. I miss having options.

Once upon a time I earned around the average national income of $50,000. Even in one of the most expensive cities in the country, I had no problem living on that salary. I just avoided spending money on certain things. I saved money every month. So while I couldn’t shop endlessly or at high-end stores, I could definitely afford to replace worn out clothes. That was my “normal” for many years.

It’s been a cold winter and that’s fine by me! The cold is much better for my body than the heat, so I’m happy about it. But unfortunately, my wardrobe is not. I have many t-shirts, but not many sweaters. The ones I have are old and out of style. Some are falling apart. They are pilling and developing holes. But I keep wearing them because I don’t have a lot of options. Sure, I have some savings, but SSDI only covers about half of my expenses each month and I need my savings for that other half. I can’t go throwing it around on clothes that I don’t really have to have.

It’s not the clothes that I miss, it’s the ease of of those purchases. It’s knowing that any money I spent would come back into my bank account and then some. It’s knowing there was always more where that came from. It was knowing that I had years, decades, to keep earning and saving.

And that security is what’s really been taken away.

Despite what certain politicians think, I would rather be working if it meant getting that security back. But the truth is, that’s just not an option for me right now.

Giving myself permission to have an off day

March 5, 2015

Some days are obviously really good and some are obviously really bad. Some are in the middle. I generally feel happy as long as I don’t feel really awful physically. But there are exceptions to every rule.

Today I feel off. My pain isn’t too bad, maybe a 4 on my pain scale, so I’m ignoring it. I’m not particularly fatigued. I have a long list of things to do, and I’ve been doing them, bit by bit. So really, it’s a fine day. But I feel…. off.

It’s been dark and overcast. For someone with Seasonal Affective Disorder, that’s a recipe for trouble. I also went back on a med this week, so that could be contributing. But of course, there’s no way to be sure. I’m not sad, exactly, just a bit down. Nothing is wrong. My family is great, my friends are awesome, my health is relatively stable. I didn’t have anywhere to go today but I didn’t feel stuck inside, I just thought of it as an opportunity to get more things done around the apartment. Then again, normally I would push myself to get out and take a walk, but today I didn’t. I knew I needed to; the more I sat, the more I felt my joints stiffen up and become more painful. But then I’d look at that dark sky and I had no desire to go anywhere.

I’m not fighting it. If I felt this way every day, there would be a problem and it would need addressing. But one day? I’m giving myself a pass for one day of feeling this way. I will let myself feel a bit down. I will spend more time than I otherwise would on the computer. I will watch silly tv. And I won’t stress out about it or feel guilty about it, because what’s the point?

I just hope tomorrow is a better day.

On not noticing the pain

March 2, 2015

The point of pain is to make you aware that something is wrong with your body. At least, that’s supposed to be how it works. Unfortunately, for some of us that system is malfunctioning.

In theory, you feel pain, you pay attention to it, you try to fix the source of it. But when your pain is constant, that’s not how it works.

My pain started more than 22 years ago. I’d have it for days, weeks, or months at a time. It would randomly go away, only to return at some unexpected time. Then about 19 years ago, it changed: it got worse and it became a 24/7 presence in my life.

Most people would expect me to have been thinking about my pain every day then and now. And in a way I did and do, but not in a focused or conscious way.

After all these years, I know what movements and actions will trigger pain and I avoid those. If I absolutely had to pick up something heavy or move in certain ways, I literally wouldn’t know how to do those things now. It’s been so many years, that I don’t remember how. Like riding a bike. I stopped riding a bike due to the pain and I’m pretty sure that if I tried now, despite the well-known saying, I’d fall over (at least in part because my center of gravity has shifted quite a bit since I was 16.) So I suppose that in avoiding those triggering actions the pain is on my mind, but only in the background.

These days, I only pay attention to the pain in two situations:

  1. When it spikes. I can’t ignore those sudden increases.
  2. When it’s consistently severe. I can ignore pain up to a 6 on my pain scale (with a range of 1-10) fairly well, and a 7 if I need to, but above that I can’t ignore it. When it hits 8.5 I start considering taking pain meds, even though they have side effects that I hate.

So what about the rest of the time? Well, I notice it sometimes, but it doesn’t take up a lot of room in my brain. Other times I forget that I’m even in pain. When the doctor asks if I’m in pain, I sometimes have to stop and take inventory of my body. Because otherwise I’m not sure. Other times I’m in a lot of pain and it’s obvious even to me.

I’m not saying it’s easy to ignore pain or even that it’s natural. For me, it was a matter of self-preservation. When I was 17 I reached a point of exhaustion and I just had to learn to sleep through the pain. There was no other way to function. So first I began to sleep through the pain, then I pushed it farther and farther back in my mind as it became my new normal. And there were other things on my mind. I was applying to colleges, going out with friends, dating for the first time, fighting with my sister, thinking my parents were unfair (hey, give me a break, I was a teenager!) and spending many hours on homework. I had, you know, a life.

In other words, there was more to my life than just the pain.

Even now, when my life is more taken up by my health problems than it was in those early days and I can’t work at a job, I have non-health things going on, too. I date a bit, I spend time with friends, I volunteer. And, yes, I take care of my health constantly. In an odd way, that’s also a distraction from the pain.

So now, like then, sometimes I’m too busy to think about the pain. Sure, a 5 on the pain scale would upset most people. And I admit, if I suddenly feel a 5 in a new place, I can’t ignore it. But if I feel a 5 in an area where I’ve had daily pain for years then sure, it might not get my full attention. A part of my brain picks up on the pain signals, decides it’s not worth addressing, and relegates it to the back row of my attention theater.

A little while ago, in the middle of typing an earlier paragraph, the pain got bad enough that I could no longer sit up in a chair. I noticed the pain. I had been ignoring it for most of the last week and my body finally gave me some clues that if I kept ignoring it, I’d be paying a steep price later. And that’s why I’m now typing to you from my couch. But while I was busy continuing this post, I forgot about the pain completely. I wasn’t aware that I was even in any pain at all. Now that I think about it, yes, it’s still there. It’s significantly better than it was when I was in the chair. No doubt that it’s better. But it’s there. And if I wasn’t so used to it I’d probably be worried that something was wrong with my body.

But I know better than that. And that’s why I’ll keep going about my day, doing as much as I can so I can cross things off my “to do” list for the day, and only noticing the pain if it gets worse again. Until then, it won’t even cross my mind.

And if it does, I’ll shove it away.

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