There are two topics that seem to be commonly taboo throughout various cultures: bodily fluids–and money.  Since I’ve already broken one taboo, I thought I might as well break the other.  Being disabled naturally has financial consequences, and so this blog series would be incomplete unless I did a post about this, as well.

My situation is also slightly unusual because I was a volunteer in a foreign country when I got sick, so when I returned home and went through doctors and tests I was 24 and already jobless.  Being frugal, I still had a little bit of money in my accounts, but not much.  Luckily, I have a good family, and so I was able to live with my parents and be under their insurance.

Still, the only spending money I had for about 7 months came from Christmas and Birthday gifts, and however I managed to parcel that out for dire emergencies, it still wasn’t much to go on.  I went from being financially independent for the vast majority of my needs to being completely dependent on others–others who had financial struggles and worries of their own.  Now, don’t misunderstand me.  My parents are willing to help out, but they’re not exactly rolling in dough, and I know my medical expenses were quite a concern for a while–luckily insurance paid for most of it.

Hmm. But how to explain.

Okay, story time. Hopefully this will demonstrate it.

So, one very long night, I was in bed, trying to sleep. The seconds were ticking by, the darkness–there’s no other word for it–was closing in.  With every first second that went by, I fought it. With every second second that followed, I’d lose my grip, I’d forget what I was doing, what unnatural fears, thoughts, what memories I was supposed to be fighting.   By the third, fourth, I’d have to try to fight it again.  I couldn’t relax, I couldn’t even remember I was supposed to be relaxing.  Minutes would pass, and eventually I would realize what was going on: the pattern. But recognizing it was happening wouldn’t save me, the cycle would just repeat, on and on and on.

I remember one thought that pricked me, told me to get up, gave me a way to fix it.  I got up, I went to my desk, turned on my laptop, went online searching for audiobooks.  I downloaded one that looked likely to be good, plugged it in, went back to bed to listen, and from there–the struggle, the battle eased.

I no longer had to fight to remember what I was supposed to be feeling or thinking about or not thinking about. I just listened to the soothing, calm voice coming into my ears.  I no longer had to fight the memories, the darkness. It was just about the story, the characters. Not me.  My battles no longer mattered.  They no longer had to be fought.

Gyeh, tearing up again. The above isn’t poetic because I’m trying to be melodramatic. It’s just–the only way I know how to describe it, what happens.

But the only way that help was possible–a late night emergency purchase–is if I had money, if I had access to money on my own debit or credit cards.  And since my money was dwindling, I had to do everything in my power to scrimp and save it.

Money is freedom.  Money doesn’t buy happiness, but without money, your options for living are severely limited.

As my money was slowly disappearing, I didn’t know what to do. Several people suggested I go on disability. But though I couldn’t work (not for lack of testing myself, for trying), I wasn’t sure if that was the right thing to do.   I honestly didn’t know if my situation merited it or if I even deserved it.  The one person I knew on disability is someone who must support herself almost entirely by herself.

When my therapist suggested it, I expressed my concerns.  She reassured me that disability is meant to help people, to give them back a measure of independence and self-reliance.   It’s meant to return freedom, and to help people who are struggling to take better care of themselves.  She said it would help me a lot, and take a lot of the stress off my shoulders–and give me back much of what I’d lost, in being so wholly dependent.

She was right. I made my decision, and I applied for disability.  I got it almost immediately, with barely any fuss.  (I will reassure you, if you’re concerned about how much the gov’t pays, yadda yadda, that it’s calculated to suit my situation, so I receive a lot less than others who need more do.)   When I reported back to her–and when I told others who are involved in the disability process–they were highly surprised. Most of the time, money is awarded only at the end of a long legal battle, apparently.   I think there are several reasons why mine was awarded so easily. I won’t go into all of them, but one of them is probably because of all the evidence I tried to provide them that I was trying really hard to prove to myself that I could work–and each time I tried, I failed.  Also, there are many basic parts of life that I just can’t do due to my illness, such as cook for myself or drive.  Whatever the reason, I started getting disability in June 2011, almost a full year after I got sick.

I wish I could end the post here, but I can’t.  I will say that I used my new financial freedom for very practical things: paying back a loan, new clothes since all of mine were severely worn out or impractical, audiobooks to keep me sane at night, a ticket to WorldCon to help further my dreams, and so on.

Then in January of this year, I turned 26.  According to the law, I could no longer be on my parents’ insurance. This meant that suddenly–I had none.  When I applied to get insurance of my own, I was denied, due to my “preexisting conditions”.  In other words? Bluntly, I was punished financially for being sick, though Chronic Fatigue Syndrome has no heavy medical bills besides the diagnosis.

Lacking other options no matter how hard I looked for them, with my mother’s help I got on COBRA. If you don’t know what that is, it’s a sort of fail-safe insurance for people who can’t get any, and it’s highly expensive. How expensive? Well, I receive $465 a month. My COBRA premium I had to pay was $450 a month.  (Yep, there’s the taboo. I just told you my income and expenses.)

Suddenly, I was broke again. For the six months I was on COBRA while I was searching for alternatives, it was awful.  I hate being broke. I don’t mind being poor, but I hate being broke.   I kept looking for a way out, but I couldn’t find any.  It was like being in a cage, where the bars are slowly sliding inward as my savings diminished or as I had to ask my parents to cover this or that month for me when they have financial worries of their own.

I won’t go into the reasons why it took so long to reach this point, but–then my therapist suggested I go on medicaid.  (Actually, she suggested medicare, but I don’t qualify for it.)   The problem with medicaid is that it doesn’t cover as much and fewer places accept it, since it’s the gov’t dictating how things should go.  I weighed my options…and I applied to switch.   I would much rather be on an insurance that isn’t always helpful than have to worry about the $2000+ for six months of insurance I’m not going to need to use.  I would rather have money.  I wanted my freedom back.

So this month is the first month in the last six months that I can breathe again, financially.  I’m still dirt poor, but frankly I don’t care.  True, I live with my grandparents, and true I could probably get whatever I need or ask for from them, but whatever I ask cuts into their financial future which grandma is carefully saving for. Someday soon my grandpa will have to be in a special care facility. He has dementia and we’re not always going to be able to take care of him. And you know what? Full-time medical care and attention is really, really expensive.

I’m not really sure what the goals of this post are, except awareness.  There are many people out there who are not as lucky as I am.  I have people who can take care of me, fix me meals, and give me a quiet place to sleep.  I have money to keep me sane and prepared, and I have insurance now in case something goes wrong.  I have my freedom, but not everyone does.


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