It seems like a curious quirk of circumstances. The same genes that gave me a devastating lung disease have also apparently made me a role model, whether I like it or not. The wisdom of the disabled is some quasi-mythical mindset people seem to have- it's like Native American wisdom, but without the benefit of feathers you can incorporate into fashion spreads.
Quite frankly, this isn't a position I'm comfortable with. I don't see myself as a great dispensary of wisdom. I don't think I'm any more wise than a normal twenty year old (yes I do, but that's because I'm conceited). I'm a terrible role model, yet people have this expectation that I should be some holy grail standard to be held up to. I don't do motivational speeches. I have declined several times to print my thoughts in a CF newsletter. It's not my beat.
Children, don't try this at home. I won't deny my life has been hard, but I can't say that I've had the paths others have had. There have been many cystic fibrosis patients worse than myself. I was just upped from mild to moderate a few years ago. I've had relatively few hospitalizations in my life time. I no longer require PICC line treatment. If I actually bother to work out, I can get my lung function into the 80th percentile or beyond. At the same time, I am a deeply cynical person. I'm not always kind. I'm immensely envious. At the age of twenty, I do many things that good little girls and role models shouldn't do. In the past, I've cut myself, threatened suicide. I manipulate my illness to skip class sometimes. I don't feel like going- I'm not feeling well. I'm lazy, self-absorbant, and vindictive.
Am I really a role model? Do my genes require that I be something that I'm not? It's a conundrum, and one that I don't think I'll ever have the answer to. But I can assure you that I'm not a mystic. Please seek your answers from the more enlightened.
Tuesday, April 27, 2010
Sunday, April 18, 2010
Money
There's something beautifully ironic in reading essays by travel writers talking how they believe people with less money are happier just as my family is struggling with the issue.
Cystic fibrosis is an expensive disease to have. Even with our Kaiser coverage, medications still pile on in price up into the thousands, and while I really shouldn't, I do feel guilty. Both my parents are in the movie industry, and that's a difficult industry at the best of times. Right now, it's horrid, and neither of my parents have held a steady job for at least three years now.
Switching majors is not a decision I regret, but it's put me somewhat behind in the grand scheme of things. I need to take summer school if I want to graduate on time, and I can only take the classes i need at UCSB- community college isn't an option at this point, because I need to take upper division classes, and those aren't transferable. As you can guess, it's expensive. Rent around here is crazy- I'm attempting to find a place to sublease for under $800, and I haven't found much luck so far in finding a single for that price.
Given our financial troubles, I may well have to drop summer school. It's a depressing thought, but I need to get a job to help support the family. It feels like a curiously heavy weight to have to be 20 and be told that I need to provide support for my parents.
There's also been hintings and rumblings that we're moving to an apartment and selling our house. I have no problem with that- but most apartments don't allow pets- especially not cheap ones. That is a problem. We have an older German shepherd, eleven years old, who is a BIG dog, and he needs space. I also have a small parrot, and there wouldn't be a lot of room for his cage. He's bonded to me- the thought of selling him breaks my heart, but it may be something I need to consider, because he can't live with me here in the dorms.
All in all, though my health is good and I'm happy with recent decisions i've made, this is a depressing time for me. I've started applying to jobs in this area so that I can hopefully make enough money to support my rent, but it's looking like studying abroad and visiting Australia aren't going to happen any time within the next few years. At this point, I'm hoping we can afford to finish school and not rack up any more debt than we have with student loans. The school won't give us financial aid because we legally own the house my grandmother lives in, and they told us that if we were that desperate we could sell the house. Uh, no we can't. My grandmother lives there. What would we do with her? Her whole life is up in Northern California, and we live in LA.
I may have to consider selling some things of mine to make money as well. I can probably get a couple hundred for my Xbox, which would cover 1/4 of rent... and then I don't know. I really hope Borders gets back to me and offers me a job, because I'm not sure what I"ll do otherwise.
Cystic fibrosis is an expensive disease to have. Even with our Kaiser coverage, medications still pile on in price up into the thousands, and while I really shouldn't, I do feel guilty. Both my parents are in the movie industry, and that's a difficult industry at the best of times. Right now, it's horrid, and neither of my parents have held a steady job for at least three years now.
Switching majors is not a decision I regret, but it's put me somewhat behind in the grand scheme of things. I need to take summer school if I want to graduate on time, and I can only take the classes i need at UCSB- community college isn't an option at this point, because I need to take upper division classes, and those aren't transferable. As you can guess, it's expensive. Rent around here is crazy- I'm attempting to find a place to sublease for under $800, and I haven't found much luck so far in finding a single for that price.
Given our financial troubles, I may well have to drop summer school. It's a depressing thought, but I need to get a job to help support the family. It feels like a curiously heavy weight to have to be 20 and be told that I need to provide support for my parents.
There's also been hintings and rumblings that we're moving to an apartment and selling our house. I have no problem with that- but most apartments don't allow pets- especially not cheap ones. That is a problem. We have an older German shepherd, eleven years old, who is a BIG dog, and he needs space. I also have a small parrot, and there wouldn't be a lot of room for his cage. He's bonded to me- the thought of selling him breaks my heart, but it may be something I need to consider, because he can't live with me here in the dorms.
All in all, though my health is good and I'm happy with recent decisions i've made, this is a depressing time for me. I've started applying to jobs in this area so that I can hopefully make enough money to support my rent, but it's looking like studying abroad and visiting Australia aren't going to happen any time within the next few years. At this point, I'm hoping we can afford to finish school and not rack up any more debt than we have with student loans. The school won't give us financial aid because we legally own the house my grandmother lives in, and they told us that if we were that desperate we could sell the house. Uh, no we can't. My grandmother lives there. What would we do with her? Her whole life is up in Northern California, and we live in LA.
I may have to consider selling some things of mine to make money as well. I can probably get a couple hundred for my Xbox, which would cover 1/4 of rent... and then I don't know. I really hope Borders gets back to me and offers me a job, because I'm not sure what I"ll do otherwise.
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