There will be more, but for now....

Allow this to be all I can offer at the moment.....

And with each breath....

In my perfectly average middle class American life, I have had the extreme fortune of getting the best of a bad situation. When I was two years old, my parents divorced, like so many others. My father drifted in and out of my life up until the last five years. I was so very lucky, though, because my mother met someone quickly after the divorce, and I took to him immediately. His name is Bob.

I don’t remember a whole lot from my early childhood, honestly; just a blur of events, a collage of an overall happy childhood. Bob was my stepfather as long as I can recall, despite the fact that he and my mother didn’t marry until I was eight or nine. I gleefully referred to him as “My Bob,” and took every opportunity to get his attention. He was about twenty five when he came into my life, and he took to stepfatherhood immediately. 

I recall he owned a motorcycle, and he used to take me on it when I was as young as three. I would sit in front of him, huge helmet on, with firm instructions to hold onto the mirrors tightly, and he would take me to the grocery store or for candy. Of course, today someone would call Child Services. My mother was never completely comfortable with me on the motorcycle, but I carried on so much she always just gave in.

When I had my first bad cut, my first splinter, my first sprained ankle, he was there for all of it. He taught me to ride my bike, and assembled all of them up until the one I bought this year. He taught me to drive, and he was the first one to the hospital when I crashed my first car. When my mother cut my nails too short or brushed my hair too roughly, I’d demand Bob do it instead, and he always did, and never, ever hurt me. 

He gave me away at my wedding. He designed and built my loft bed. He taught me how to make spaghetti.

He did all of this while working up to seventy hours a week for Nazar Rubber Company. He was a lathe operator, in a dirty, smelly, loud factory. He carried me on his health insurance. He provided for my mother and I for years. The plant eventually went under, about fifteen months before he was able to retire. He is unable to collect his full pension. He had held a string of minimum wage jobs, all the while he was depressed and listless. 

And now, he is held tight in the clutches of COPD. He is on oxygen about seventy five percent of the day, and it has been determined that he wakes up from oxygen deprivation seventy three times in one hour. He can barely breathe, barely move, and he is gaining weight and retaining fluid, all of which contribute to his overall condition. He is absolutely disinterested in any of the treatments the medical team has offered him.

I know that I am watching him slowly die.

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.  

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? 

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…..

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.