Saturday, September 25, 2010

Tomorrow tomorrow.....

My original intent with this blog was to avoid any topics that are simply emotional. I was attempting to post about topics in the news that relate to my life and to explain how it impacted me or what my take on it was. This blog entry, however, is not of that nature. This is the entry in which I break my own rule. This is when I share too much and really show you a piece of myself. Not that it is all that interesting or unique, of course, but it is me.

I have already written an entry about my mother’s breast cancer. It was a challenging post to write, from both a logistical and emotional standpoint. I wanted it to be well written with a central point without turning into some sort of fucking emo pity party. When it comes to cancer, or any potentially terminal illness, detachment eludes me. I often find myself overwhelmed by grief and gravity, unable to speak.

Tomorrow, I throw myself into the lion’s den.  Tomorrow is the Susan Koman Race for the Cure, and for the very first time, I am participating. I am terrified.

My mother, being a survivor, wants me to participate; and to be honest, I want to as well. However, I do not want to feel and experience what happened at the last fundraising event we attended. No, no one became a money grubbing prick amidst the survivors and physicians. We have that much to be thankful for. What I did experience was something so foreign to me, I did not understand where it came from nor how to process it.

What I felt was overwhelming grief and guilt.

I was in a huge tent, likely a tent that contained more fake breasts than a porn convention of equal attendance, and as each woman got up to tell her story, as soon as I heard the tone, pitch, and rhythm of her voice, my heart ached and my chest shrank, my eyes teared up and I struggled to breathe. Each woman had a different tale to tell, some triumphant and inspiring, some reserved and determined, but invariably, my response to it was the same. And it completely overwhelmed me. After each woman had spoken, and I stood up to leave, I had the feeling a strong breeze would blow me away; I felt hollow inside.

Since that day, I have tried so hard to understand why that was my reaction. Even now, as I type this, I feel it. I think I have reached some conclusions, although the totality will never be fully clear to me.
I am immensely proud of these people. I remember going to chemo with my mother, doing my best to entertain her, and knowing that in two days she would be a ghost of herself, angry, sick, hungry and tired. I saw the other people there too, most alone, trying to forget the IV, the port, some looking so frail. Yet my mother, and so many others, take these near lethal doses of medication in order to fight the cells inside that threaten to kill them.

I am angry for them. Angry that there is no decernable rhyme nor reason to what triggers cancer. There are plenty of theories, of course, but no one really knows why. No one knows if a cancer patient is random, or if their children are destined to have it. No one knows how to prevent it. At the most recent event I attended, I was appalled at how many patients had been treated previously. There was a woman that had a double mastectomy and then discovered she had ovarian cancer seven years later; she walked with a cane and was undergoing chemo at the time.

I am sad for the patients, and sad for their families. Again, no rhyme nor reason to the disease. My mother, at the age of fifty-five, had never been put under for surgery. Never. The most invasive procedure she had was giving birth to me. When they told her she needed a port, and explained what it is, she nearly fainted. The port was just the beginning of the drugs, incisions, tests, procedures, and appointments she would have. She was scared and overwhelmed, and it all happened so quickly.  No matter how much you are there for someone, they still simply have to do it all alone, and no amount of my personal strength could make it all better for her. I was powerless, and my mother was feeling every pinprick on her own.

Lastly, I feel guilt. It seems silly to feel guilty for not having cancer, but I do. All the things a cancer patient goes through, and despite being right next to one for every step, I still cannot begin to grasp how that feels or what one goes through emotionally, physically, or psychologically. I feel badly for attempting to comfort or relate to someone dealing with so much; it feels almost an insult. I also feel guilty that my mother is alive.

Which brings me to tomorrow. Tomorrow, I will be surrounded by survivors, supporters, family members, sponsors, and such. Tomorrow I am going to the local breast cancer Mecca. My mother will be there, her oncologist, her surgeon, her friends from chemo, and so many other people whose lives have been affected by cancer. And I am scared.

I know it is supposed to be a celebration. It is supposed to be inspiring. And it is. But it also makes me remember seeing all those shells of human beings in the infusion center, and the one closest to me, on my left, is my mom.  

Sunday, June 6, 2010

My ignorance truly is my bliss.

Growing up in average, middle class America, there were a great many things I have come to realize I was completely ignorant of. In some aspects, I am absolutely grateful for it, but alternatively, I feel like I am at a disadvantage as well.

For example, in our home, no one ever discussed ethnicity. Hell, I bet I didn’t even know what it really was until high school. Sure, there were other ethnicities around me, but I simply was not aware of them. I didn’t realize that different ethnicities meant different ideas about people, the world around them, and their place in it. I grew up believing that we all wanted the same things for ourselves and our planet. I believed there were two types of people in this world: good ones and bad ones, and both kinds were everywhere in the world. I had no idea that religion, geographic location, and upbringing could shape a person in a way that was vastly different than I; I presumed despite these differences in background, everyone still wanted the best for each other.

My parents never made reference to a person in relation to their background, so I never noticed the nuances of other ethnicities. To this day, if someone comments that some looks (insert ethnicity here), I always find myself trying to figure out exactly how that is. Is it their eyes? Their mouth? I have little idea.
For this ignorance, I am both at an advantage and a disadvantage. I enjoy having zero preconception in my mind that I must eradicate. I am a blank canvas in that way, my picture of you is painted only by your actions. I don’t have to discard obsolete or prejudiced information, because, well, I just don’t have any. For that, I am quite thankful.

The disadvantage is something I feel much more acutely. I am in complete awe of people with rich cultures (something my upbringing lacked severely in), and I am absolutely ill equipped to engage in any type of intelligent conversation, since I have absolutely no idea where to begin. I find culture so truly fascinating, but since my own upbringing was relatively void of tradition and religion, I have none of my own to draw on and relate to others with. I have never touted myself as a “smart” person per se, but the idea of being so vastly ignorant, so completely deficient in what I currently regard as a key area in interpersonal communication, plagues me, and makes me feel small and sheltered. Which I hate. Immensely.

While this isn’t my biggest weakness, it certainly weighs on my mind. You didn’t actually think I’d post my actual biggest weakness here, did you? 

Monday, May 24, 2010

How will you be paying for your cancer treatment today?

This post has been a challenge from conception to execution. Frankly, it is not a subject I ultimately was eager to revisit, however, it certainly has shaped a lot of my recent opinions on health care and human beings in general. I hope not to be too boring or overwhelming with nonsensical details. The usual disclaimer applies on this post. I welcome any comments, but please be warned that this is a personal tale, and it has shaped my opinions on health care, and all content is my personal opinion, not a statement of right or wrong. Fucking deal or fuck off.

A little over two years ago, my mother found a lump in her breast. She was without health insurance. We walked into the hospital outpatient surgical facility, and began the check in process. At the time, my mother had not yet been approved for Medicaid, but her physician felt the need for a biopsy was immediate. When we explained to the hospital representative what my mother was there for and that she did not have her number yet, the woman stopped typing, and looked at my mother. “You don’t have your number yet?” Her voice was measured, tentative. Her eyes softened, and she delicately explained to us that no procedure could be done until a payment arrangement was made, and if she was entered in without that Medicaid number, she would be deemed “self pay” for the duration of her cancer treatment, and be financially responsible for the entirety. We needed that fucking number, and we needed it at that very moment, or no biopsy.

My mother, already terrified of both the biopsy and its larger implication, tried to hold it together. Her face fell, her voice quivered and stammered, but she did not cry. I immediately grabbed her cell phone and started calling every person she had dealt with from the doctor’s office to the county, trying to reach anyone for that magical number. The hospital representative made her own calls, to various people above her, a look of concern and helplessness clearly displayed on her face, as my mother sat looking distant, broken, answering a barrage of questions from both myself and the representative in a trancelike state. She could hear us. She responded. But she was lost in her own mind, concurrently thinking about the cancer inside her and how the fuck was she going to pay for treating it, or even diagnosing it.

It was in that moment that I formed my opinion on health care. 

Ultimately, we had to leave without a biopsy that day.

For those that want to know, my mother did not die from cancer. In fact, she is very much alive. The reason she is alive is Medicaid (and of course, the science of cancer treatment). We got our hands on that magic number the very next day, as a result of due diligence.  

You know what number they should have needed? Her fucking Social Security number, because everyone should have health care. It’s just that goddamn simple.
 
Oh, and now that her cancer is in remission, her benefits are being revoked. And she has a pre-existing condition…..

Tuesday, May 18, 2010

This week.....

I am researching for a bit of a story on my mother's breast cancer. Hopefully, it will be an interesting blend of personal journey with something (GASP!) uplifting for a change.

What's in a name?

misscelestia

It's mine. Well, not really. It isn't the name on my birth certificate. And I'm glad. Allow me to go back, a million years or so (riiiiiiight) and trace the origin of my "name" as I present it on the web.

My given name is Michelle. As a child, I hated my name, and irrationally so. To this day, I cannot recall what it was about "Michelle" that was so awful. Currently, I love my given name, and have for years. At any rate, I wanted to change my name when I was six years old. Fortunately, they don't allow elementary aged children such indulgences. Unfortunately, I had been given a common name, and my name was shortened to "Shelly" for school purposes. I hated it. I have always hated that nickname. I have hated that my given name was so easy to shorten into something that sounded like a joke. I was also irate that I was the Michelle that had to suffer the nickname, while the other girl enjoyed he entire name. But alas, "Shelly" I remained until I graduated high school. 

At that point, I did what any college freshman does - I reinvented myself. For me, it was in name only. Other than that, I stayed painfully the same. I changed my last name, and my first name became, very rigidly, Michelle. I, to this date, loathe nicknames. I cringe whenever someone thinks they're cute and gives me one. 

After my freshman year, I made the stupendous blunder of getting married. I had no idea what kind of psychosis I was getting into. My husband had decided he was Wiccan, and as such, I was supposed to share this journey with him. We read books, mainly mainstream Wicca fluff, and he insisted I needed to dedicate myself to Wicca with him. The only part of this that was appealing to me was to choose a name. It is believed that choosing a name is part of taking control of your life, your being, and whatnot. Your name, as given to you from your parents, isn't necessarily a reflection of you as a person. 

I almost just took Celeste, and then I realized that I was only limited by my imagination - and a traditional name was not required. So I decided on misscelestia. All one word, all lowercase. I actually get annoyed when people erronously capitalize it (although I know they are just trying to be proper or courteous).  

I have always been fascinated by..... well, stars. Space. Planets. The irony is I suck at science. I have always looked up at the night sky and thought about what is out there. Not so much in the sense of other life, but more in the sense that the Universe is so large, so beautiful, and I am humbled by it. Sometimes, when I close my eyes at night, I see the stars, and it is so.... comforting.

As time has passed, I have come to realize how much misscelestia means to me. There is a fair amount of foreshadow to the name I had chosen, and I never realized how long this name would stay with me. But, I don't ever want to change it. I have evolved, I have become many things, but I am always misscelestia.  Just as much as I am Michelle. 


Sunday, May 9, 2010

Motherhood.

Allow me to preface this with a warning - this is a rant. I will do my best to be somewhat fair, but bear in mind this is a topic that I feel strongly about.

Today is Mother's Day. I am lucky enough to have my mother, and be close enough to spend the day with her. That said, I am childless and sterilized, and I am both completely comfortable with and proud of these facts. These are life decisions I made, and I believe it was the right choice for me and those around me. There are reasons, obviously, and if anyone cares to read them, I will share them, but that's another blog.

Today, while at work, I was greeted with "Happy Mother's Day!" from many a customer. Now, I realize that they are just being nice, but I was irritated. I do not appreciate the assumption that a woman is a mother. I also hate that just because a woman has squeezed out another baby she is a "mother" - I have seen some serious failures become "mothers" and it is tragic. Fathers are another topic entirely, and I am not going to broach the issue right now, but we all know some real failures there too.

When do I get a day in honor of my responsible life choices? When is the "Responsible Birth Control Day?" And no, I am not asking for that day literally - political correctness, in this instance, can go fuck itself.

For all of the honest to goodness mothers out there, I hope your kid(s) are honoring you properly for all that you do. Mothers that do their jobs well are a gem, and impact their children in ways they may never even know. My mother means so much to me, and has taught me both by guiding me and by the way she conducts herself. I hold everyone else to the standard she set, and I know many other kids that do the same.

For those of you that go around wishing every woman you see a Happy Mother's Day - stop. It's presumptuous and, while you have the best intentions, it doesn't change the fact that it isn't even any of your damn business if the woman is a mother. If she mentions her kids, go for it. If not, keep your greetings out of my ovaries.

Saturday, May 1, 2010

Soooooooooon.

Soon the end of the semester will be upon me, and I can actually post some things here that I've been stewing over. 

Thursday, April 8, 2010

Dennis Hong: My seven species of robot | Video on TED.com

Dennis Hong: My seven species of robot | Video on TED.com

This is seriously, really, very, very VERY cool.

Just don't tell anybody, and it'll all be okay.

Yesterday, on Twitter, a group of #tweeps got into a very interesting (albeit infuriating) discussion about Constance McMillen. This discussion, which quickly degenerated, simply reminded me of how narrow minded people can really be. I have never thought of myself as any more open minded than the guy next to me, but apparently, that is not the case. Here are my thoughts on Constance McMillen's case...


As I understand it, she wanted to take a girl to prom and she intended to dress in a tux. She has been openly gay since the eighth grade.  


If we were talking about any other attribute to discriminate against this girl, everyone would be outraged. But, because we are talking about her sexual preference (terminology I loathe) it somehow is not only okay, but discussed at great length. Perhaps it is because some people believe that her orientation is a decision, while others believe it is genetic/scientific. Personally, I fail to see the relevence of the cause of her homosexuality - the fact is, she likes girls. 


The school eventually decided to cancel prom as opposed to allowing these two girls to go together. As we know, alternate proms were made available to both groups, and exclusions were made. The point was raised that if she had just kept the aspect of being gay to herself, there would not have been an issue, but I fail to see that as a solution. Isn't that the exact policy in the military? You know, the one they are trying to get rid of?   


High school is supposed to be a try out for the real world. As I recall my high school experience, I recall being picked on for being different, but not to excess, and it did prepare me for the reality of adulthood (in that way). What is the lesson we are teaching these students? Sure, everyone needs to learn that everyone isn't going to be nice to you, but this is above and beyond.


In my mind, the school should have treated it the same as a male female relationship - you know, stopping inappropriate touching during slow dances, making sure no one's getting felt up, and so on. I don't understand how the sex nor sexual orientation of these two students required any action from the school at all. But then again, I happen to believe that gay people are entitled to equal rights. What do I know?



Tuesday, March 30, 2010

He'll never give you more than you can handle.

I have found myself in a very trying place over the last week or so. There have been a lot of really upsetting issues and very little I can do to rectify them. It is all putting an enormous strain on me, and I have very friends at this point to vent to - as of late, I feel I am overloading them with my despair, so I am trying to just shut up about it already.

Last night, while sitting at a bar with a friend, she told me, "Whatever you believe, God, The Universe, Balance, whatever - it never gives you more than you can handle." I was furious. I kept my anger and dismay to myself, but the fact is, even today this statement makes me red.

Allow me to indulge myself, and delve into exactly what it was that made me angry. First of all, I do not believe in "God" - but she did try to make that part as inoccuous as possible. But as a "non believer" or whatever, I find it insulting to believe that there is some being that is completely fucking with my life, pushing me, but not too worry! He/She/It will stop amusing itself when I reach (but do not exceed) my breaking point! And I should be thankful to have been tested in this way! Is that honestly some kind of consolation? Do people take comfort in that?

I have no explanation for the bad things that happen to people. But I sure as hell don't tell them the tooth fairy will make it all better. Sometimes, bad shit just happens. And you weather the storm, as best as you can. That's all you can do.  I'm hoping that this one is losing steam, and the calm will come soon.

Sunday, March 28, 2010

Sam Harris: Science can answer moral questions | Video on TED.com

Sam Harris: Science can answer moral questions | Video on TED.com

I have never claimed to be a smart girl. In most cases, I am extremely ignorant of a lot of things around me, and I have lived most of my life contained in a little bubble, a condition of most of the romantic relationships I have been in. I used to think I was developing into a pretty interesting person, and since then, that growth has been stunted. Life happens - what the fuck can you do? You look around at all the pieces laying around, gather up the good ones, and sweep the rest of that nonsense the hell out of the way.

I am trying to be a more informed person. I am trying to shut the fuck up and listen. To see what I have missed. Because for years I have hidden and dulled my brain. And I do not like it.

I am trying to embrace a more analytical, thoughtful, and poised thought process as of late. I used to be a passionate, bleeding heart; I always went by how things felt. While my opinions haven't really changed, my approach to them is. I once felt an obligation to be very PC, and lately, well.... I haven't. I just want to know the facts, and I'll make up my own mind, thank you.  I have found myself shifting very much to listening to others, without necessarily offering an opinion.

Now then, getting to the fucking point. The video above was one of those things I listened to, and took in. As a person without religion, I am always interested in the subject. I found his viewpoint to be based too much in observation, I suppose, since it was a lot of "Isn't it apparent this is wrong?" but I also enjoyed it in its simplicity - really, isn't it, most of the time at least, readily apparent that something is morally wrong?

A friend of mine suggested I take an ethics class. I just need to read some good books this summer, and use this brain in my head for the first time in years. 

Wednesday, March 24, 2010

Try try again.

Since my stepdad has been denied disability for his COPD, he has now decided to take the path of Worker's Compensation, and his hearing is coming soon. He has gained 4lbs of fluid weight in the last seven days, and he has been sleeping more - the weight is draining him, and putting pressure on the walls of his heart.

All I can do is hope that his case is presented well by the attorney. 

Tuesday, March 23, 2010

Health Care What?

I'm going to completely blow my wad on the first shot with what has the potential to be the most interesting thing I have to say, with my very first post in this blog. So, after you read this one, you can rest assured, there will not be anything else worthwhile here again. Wait. Um. Disregard that.

Allow me to also add a disclaimer to this post. I am not allowed to express opinions at my job, since I work in the service industry. That said, I know I will piss someone off with my comments, and that's fine. It's the fucking internet, someone is going to offend you. Deal.

Now then, the subject on my (and majority of America) mind is the recent health care reform. I'm not thinking of it in real terms quite yet; I have just started considering it in relation to my parents. Today I tweeted, "I wish I had something poignant statement about HCR, but honestly, I just want my parents to be able to get the medication they need." Quite simply, I believe everyone should have health care. Period. It's a human right. I also believe the standard of care should be the same for all of us. That said, let me start at the beginning.


And I really do mean the beginning.


My parents divorced when I was 2. My stepfather came into my life almost immediately afterward, and assumed the responsibility of being a father to another man's child. Neither my mother, father, nor stepfather had college degrees. All of them worked blue collar jobs, with my stepdad having the most stable employment; he had started working for Nazar Rubber Company in the late 70's. It was a union job, Teamsters, and he was active in the union and negotiations for health care and other contract issues. He worked 60 hours a week for most of my life, switching between all three shifts. He generally bid on positions and shifts that would allow him to spend time with me - I remember there were sit downs at the dinner table to discuss what I wanted him to work, and I always wanted to know just one thing: when would I get to see him? 


When I was in the fourth grade, my mother and stepfather purchased their very first house, in a rural neighborhood. Private schools weren't as common, and so they sought out the "safest" public school they could.  I had the largest room I'd ever seen. As a condition of this large room, it was explained to me that my mom had to work full time. She hadn't worked full time since I was born, and I never went to day care. 


Life went on in that fashion, with my mother working full time (and for a little while, she worked two jobs) and my stepfather working 60+ hours a week in a dark, dirty, smelly factory in order to pay for our house and, eventually, my braces. 


Eventually, my stepdad's plant closed.  So began the fight. 


My stepdad had worked there for 28.5 years, just shy of 30 and his full pension. The health benefits offered were outrageous, and he could only collect a percentage of his pension. He was also restricted by his union on what kind of job he could get while collecting his pension. 


During this time, my mother developed MS. I began going to neurologist appointments and we eventually traveled to The Cleveland Clinic for multiple MRIs. All the while, the time on the insurance was running out. Eventually they prescribed my mother Neurontin and she is still taking it. Once the insurance ran out, she went to the drug company and got on their assistance program. She has gradually been decreasing her dosage on her own, because the company has an allowance they give her. Her dosage hasn't been what the doctor prescribed in a few years. 


After we got the MS under control, around Christmas, she discovered a lump in her breast. She immediately went on Medicaid. I would like to note that was the best thing to happen - when faced with a life threatening illness, the government stepped in, and everything was covered. Long story short, she lived to tell the tale, and is just now about to lose her Medicaid coverage, as she was given a clean bill of health.


The end of my mother's breast cancer apparently just meant we were in for more fun, and my stepfather developed COPD. He has been in and out of the hospital, and he had to go on medical leave from his job.  He is currently fighting for disability, since the man can barely move without having extreme difficulty breathing. He has been denied already, and is on appeal. His condition is only getting worse, as he cannot afford to pay for the drugs he needs to breathe, just the lower level meds that treat the symptoms. He also is filling up with fluid from the steroids they gave him, which is causing pressure on his heart. Eventually, he's looking at congestive heart failure as well.


Which is a long way to my point. My parents have worked, all of my life. Physically demanding jobs, even. They've paid their taxes, been good citizens, and now, they cannot even pay their rent, yet my stepdad's pension ensures they can not receive any financial assistance. They ride the line of poor, but just not poor enough; sick, but just not sick enough. And they are dying. We all are, I know.

This is the face of the health care debate to me.