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Wednesday, September 21, 2011


Today I received the first of my monthly disability payments. This is a relief, for the most part, since my financial future is no longer in jeopardy, and there is also something rather validating about having one's disability recognized by the government and I am thankful that there is a system in place to help folks like me who are unable to work. But I must confess that my feelings are somewhat mixed.

For one, it feels a little different to be depending on the government versus depending on my parents. (Well, I'm still depending on my parents at this point, but the day will eventually come when they will no longer be there or able to support me.) While it doesn't always work out that way (for any number of reasons, from dysfunction to lack of resources), there is a certain moral obligation for family members to look after one another. I am acutely aware, however, that the government doesn't owe me much. Unlike a retiree on Social Security, I haven't spent a lifetime paying into the system. I only put in about five years of full-time work before the migraines took hold. The size of my monthly payment reflects this rather paltry contribution, but the fact is that over the years, the government is going to be paying me a lot more than I ever paid them. It's not just the monthly payments, either: once I'm independent of my parents, I'll need subsidized housing and food stamps to survive. So I'm profoundly grateful, but being the recipient of charity isn't an entirely comfortable feeling.

And then this: I wish I were able to work. Trust me, I'm not malingering, I'm not looking for a hand-out or an easy ride or scamming the system. To be thirty years old and unable to work because of illness is disheartening. I liked working. I was very proud of being a good employee. I was looking forward to a lifetime of work. I had a very satisfying job working as a floral designer and was starting to study graphic design while also investigating whether I wanted to return to grad school to study scenic design for theater. I was so excited about my future. Although I've always been someone who needed a fair amount of downtime spent alone, it was because I have an extraordinarily active mind, an intense compulsion to create, and a powerful work ethic. Idleness has never been of much interest to me!

The flower shop where I worked for many years was extremely flexible, understandable, and accommodating when it came to my (pre-migraine) health issues, and so it gave me a lot pleasure to do my job well in return, whether they needed me to wash buckets, act as a navigator during deliveries, or make beautiful arrangements. However, I made a point of being a good employee even when I wasn't in a job that suited me as well. I worked just as hard in various temporary office jobs during school breaks as I did arranging flowers. I was proud of the fact that the mortgage company where I worked one summer expressed tremendous dismay to learn that I would be leaving them to go to grad school--they'd already come to see me as reliable employee who was quick to learn new skills and very thorough in her work. For a while I had a rather difficult-to-describe temporary position with a company that put advertising circulars and catalogs online for national retailers and I was very proud of the fact that I picked up my duties so quickly and was able to explain them so clearly that within a week of starting, the other temps were coming to me with their questions rather than to our supervisor. This did not go unnoticed, so by my second week on the job, my supervisor had ME training the next round of incoming temps! The bottom line: no matter the job, I was always hard-working, thorough, detail-oriented, honest, reliable, quick to learn, good at taking direction, good at giving direction, provided quality customer service, was able to remain cool in a crisis, and always got along well with fellow-employees. (I was NOT good at lifting heavy things. That was my primary (and literal) weakness at the flower shop. Also, my tendency to be thorough and detail-oriented occasionally meant I was not extraordinarily fast at what I did, but I was always efficient and organized in my thoroughness. I am utterly incapable of producing sloppy work; to do so would be offensive to everything I value. Fortunately, my version of "slow" tended to be comparatively fast!) As you can see, none of my attributes, or even my weaknesses, as an employee make not being able to work very palatable for me!

I consider myself lucky that I can work, so to speak, on a very limited scale. I take my art seriously, and while I'm not at the point where I'm bringing in much money and certainly not with any regularity, it does offer some of the satisfaction of having a job. The frustration, of course, is that I am only capable of a couple of hours of work on a good day, and none at all on others. I have sufficient ideas that I could work ten hours a day, six days a week on various creative projects. But I'm well aware that only being able to do little bits of work at a time is so much better than nothing.

So to Social Security: thank you! I'm extremely grateful. But believe me, if I do have a reversal in health, I'll be so glad to go back to work!

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