Sunday, May 15, 2016

The Cancer Money Blues


Let me briefly recap the financial hurricane that is my cancer. There are lessons here for others facing their battles. I'll try to remember to do a sketch on this subject, remind me if I forget.

I had my perfect little life. Perhaps the universe thought I needed this respite before the current trial. Mom had passed. After years beyond count as a part-time and then a 24/7 caregiver, my life was my own again. It took me most of a year to function again, but then I went on a writing spree of amazing proportions. If it were transposed into a martial arts movie, I'd be Donnie Yen against ten black belts in Yip Man. Essa came first, even though Causality was in the works. Then Causality. Then Contravallation. After that, Suzie. Rewire. So many short stories and novellas! A book of them in fact. Something like 700,000 words of fiction in less than five years. Yes, I was saving it up. All those years of caregiving for my parents, of deferring my life because they needed me. A tsunami of words engulfed me, drowned me.

I had a part-time job I really liked. It was enough to pay the bills and gave me time to write. I even had some money in the bank.

Then the pain began. One morning I woke up and I couldn't open my mouth. I went to several different doctors. "TMJ." "TMJ." The last one said something a little different: "Parietal infection."

The word pain just doesn't capture the agony I was in. I couldn't work. My savings began to disappear. Quite suddenly, I was dead broke. I ended up in the emergency room twice. Finally I met a doctor who recognized my symptoms. It was confirmed by biopsy and PET scan. There was a massive tumor in the left side of my head.

My money was gone. I was dead broke. I was probably dying. But I didn't die. I'm still broke, though.

***

The pain had left me unable to work or do much of anything. This had started in April. By May, it was debilitating. Funny how money just disappears. My memories of this time are a little vague, due to the intense pain and the opiates the doctors prescribed. It couldn't have happened overnight. That's how I remember it - Boom! - in an instant. I know that's wrong. That amount of money can't just vanish. Time gets compressed here. I don't really have any memories of May, June, and July. I know I was making Facebook entries, at least I think I did. I know I took a picture of my first chemo. I have no idea what I said. All my money was gone by this point. Thank goodness I'm a nice guy. The apartment manager and I were friends. He let me slide on my rent. I was eventually evicted.

This next part might come in handy if such a thing happens to you. My buddy the apartment manager couldn't shield me forever. He got a new job and left the complex. The owner wanted me out. Most owners don't really like courts and lawyers. Mine didn't. It was quite civilized. We went back and forth for a couple months. He must have been frustrated with me, since I was a little out of my mind. We finally came to an agreement. I would consent to leave, he would not seek my back rent. Further, he agreed to help me a little financially in my new rental if I were out by the end of the month. I was very lucky that Jolene and her husband were available to help me move my stuff into a small storage unit. "Helped" is not really an accurate word to use. Jolene and her husband moved me. The morphine helped, too. Surprising the things a person can do when the sense of pain is deadened by powerful opiates. I became a lodger, renting the spare bedroom at a nurse's house.

If cancer smashes you low and ruins you financially, remember my story. Explain it to management. Some states have tenant protections in the law. Negotiate on the back rent. Sometimes it can just "go away." Press management - or the owner - on assistance in moving out. This is highly situational. Sometimes there is no give and you're out of luck. In that case, salvage what you value most and leave the rest behind. There are kind people in the world. There are cruel people, too. As to who you have to deal with, that's a highly randomized occurrence.

I keep forgetting to ask for donations. A friend reminded me of that in an email. "This is for donations! You need to ask for a donation!" He's right. If you can, please donate. Things are on such a knife's edge, even a tiny donation can help.


***

My personal financial disaster just doesn't want to end. It goes on and on. Is there a way to dodge this bullet if you get cancer? Though my answers might seem humorous, this ain't no joke.

The easiest is to be rich. This is out of our control. A study somewhere puts wealth as a family affair, Over 70% of wealthy people have wealthy parents. If you're rich, my friend, no worries.

The second, get lucky on the type of cancer you get. This is totally out of human control, so I mention it only in passing. Even colon cancer doesn't have to be this debilitating.

Which brings up the third answer, catching the cancer early. This also isn't always possible. As good Dr. Lee, my radiation oncologist pointed out: "Most cancers can't be distinguished in symptoms from more mundane illnesses, not at first." Some tumors aren't metastatic, not at first, so antigen counts might miss them. But early is better than late. Also, cancers are weird in their behavior. Some will hit suddenly, over a matter of mere months, going from stage one to stage four in a flash. I'd class this one as partly beyond human control.

Fourth, marriage to a wife/husband who works. At least a little income will be coming in. You and your family will take a hit. Kids might have to drop out of college, you might have to sell that nice car to get something cheap. You might even have to move. But mostly you and your family will survive, if only barely.

Fifth: retired, you must be. Your income won't take a hit and Medicare will work wonders for you. If you aren't, hope you meet one of the criteria above. This is the best cure for what cancer ails you, but you have to be over 65 or 67 or 69 or whatever the cutoff age is for you.

That's it for part one. I can't think of any other ways to avoid my fate from the start. This second part is shorter. How to ameliorate the financial damage?

The reason I still have a ride: I bought a used minivan outright back when I had the money. No car loans. Perhaps I have should have bought a mobile home when I had the chance, but after taking care of my parents for all those years, I didn't feel like settling down. I know I've been in Albuquerque for years, but before the cancer hit, I was thinking of hitting the road again. But in this game of hypotheticals, I should have protected myself by buying a mobile home or an RV outright. The modern habit of living the borrower's life will leave you worse off than I am...if that's imaginable.

Here's what would happen if you had my cancer, and it's much worse than my present fate, as low as my current condition has become. No car, bank repossessed it. No home, bank repossessed it. No internet, because you're homeless. No gofundme as a result. Maybe if you're lucky, you get passed around from one spare bedroom to another among your friends. This last part is the worst. If you aren't in a state that adopted the ACA's Medicaid expansion, no insurance. You are dead, my friend.

To recap this amelioration, I'll list the things you need.

First, own a vehicle outright.

Next, a place to live without a loan on it.

Third: live in a state that accepted all of Obamacare (the ACA).

That's it for this cycle. As my friend reminded me to do the other day, I need to ask that you either donate or pass along my gofundme link.

I'd like to point out one thing to those with hard hearts, it shouldn't matter who you are, no one deserves this. I didn't deserve this. I'm a nice guy. I took care of my parents with great devotion. Unlike some of the people in my life, I never grifted or stole anything. I've always endeavored to be a good person. Bad things happen to good people, it's a rule of the universe. Being good might reap a reward in the afterlife, but in the here and now it makes no difference to the ills of this world. I didn't ask for this. This is no one's idea of a good time. I did everything right and still the cancer came for me. I had a head-and-neck cancer, which mostly happens to people who smoke and drink heavily. I haven't had more than one beer since 1991. I don't smoke. I even ate well. I was the proper weight. I am, as the saying goes, as tame as a Methodist at a picnic. But saying "I don't deserve this!" will only drive one insane. Bad things happen. A bad thing happened to me, through no fault of my own. I accept it as part of this life.

Even if you drank, even if you smoked, even if you were mildly bad, you don't deserve this. No one - with the possible exceptions of Attila, Hitler, Stalin, and Mao, the Big Four of Evil - no one deserves this.

Thanks for your help.


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Sunday, April 17, 2016

The Ticking Clock

Fooling around with the gofundme site, I discovered that the poster generator doesn't produce an html table graphic, but a real image file. This is good because everything I own, outside of my laptops, is broken. My desktop, busted. My printer, stopped working sometime in November. Even my old minivan needs a tune-up. This is another life-lesson about cancer. It will consume everything in your life. You might end up on the street, naked, alone, and slowly dying. Our government is bound by so many bizarre rules, so much that hinders those who need help, it seems like the palsied aunt who comes for a visit, tries to help with the dishes, and breaks everything she touches.

At least I won't starve. I am disqualified from Social Security's many programs, in part because I am, very slowly, getting better. Also in part because I seem to disappear from their screens. It is caused by the great gift I gave my parents, starting around 1990. I became their part-time caregiver, living in near poverty, driving home every weekend, sometimes during the week, taking crappy part-time teaching jobs at local community colleges so I'd have the time to drive home and help Mom with Dad. Then 2000 came and Mom's dementia symptoms appeared. After that, I was traveling home to help Dad with Mom. Dad had congestive heart failure. We got him out to around twelve years. He was 84 when he died in 2002. Mom, we got her out to nine years, to 93. Average life expectancy for someone after first onset of dementia symptoms is 4.5 years. We more than doubled that for Mom. Seven years with no work, as her 24/7 caregiver. My loving gift to them. How I still miss them!

So I won't starve and I have medical insurance, thanks to the state of New Mexico. They won't help to keep a roof over my head, but they will keep me alive. Without the one, I don't really see why they bother with the other two.

I'm not lazy, I never have been. I do work a little on my laptop every day. I mostly try to get my old comics listed on etsy.com (https://www.etsy.com/shop/RPBird). Nobody's buying.

Unless I have to go back on chemo soon, I think if I can make it through the next three or four months, I can get a day job, get back to a halfway normal life. But these next three or four months, that's the problem. I can't tell, my tiny improvements aren't linear. Up one day, down the next. Could be a couple months, could be five. If someone could tell me, that'd be great. Even my doctor doesn't know.

This certainly is a roundabout update. If you can't donate, but you want to help, send me an email (rpbird.bird@gmail.com) and I'll send you the poster image. It's a jpg file. You can print it out and post it. I'd deeply appreciate it.  An image of it is below.

https://www.gofundme.com/cancersurvival

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Links:
https://www.gofundme.com/cancersurvival
http://www.rpbird.com/
https://twitter.com/rpbirdwriter
http://amazon.com/author/rpbird
https://www.facebook.com/rpbirdwriter

Friday, April 15, 2016

Epiphany

Disturbed sleep again. Woke up to vague, half-remembered dream frights. My mind immediately supplied the answer to why I'm this way. I am getting better, very, very slowly. So why all this debilitation? Because I'm not on opiates anymore. It took me almost two months to wean myself off them. I don't need them anymore, because the devastating pain from the tumor isn't there. But these other pains, the cramps, the disturbed sleep, the intense, debilitating fatigue, they've always been there. The opiates kept them masked. Now they're out in the open. Now they are a misery. Cancer really is a curse, a harm that keeps on taking even after it begins to die. My tumor is mostly or completely dead at the moment, but its ghost lingers on, vindictive, capricious, hateful, trying its best to get me dead.

https://www.gofundme.com/cancersurvival

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Links:
https://www.gofundme.com/cancersurvival
http://www.rpbird.com/
https://twitter.com/rpbirdwriter
http://amazon.com/author/rpbird
https://www.facebook.com/rpbirdwriter

Wednesday, March 23, 2016

Paths to the Dark Side

There are many paths into darkness. This is only one way.

1. Language. How did Hitler manage to get an entire nation to acquiesce to the murder of millions of innocents? Through the manipulation of language. Calling political enemies and despised outsider elements in society parasites, rapists, murderers, lazy, or dangerous works a malignancy into the moral character of individuals. Repeat them often enough in different venues - fortunately Hitler didn't have the internet, he just had speeches, print media, radio broadcasts, records, and film - that was enough.

2. Passivity. Not to speak out, even a tiny bit, against a great, imminent evil. Not to say no when one's neighbors cry for violence against the innocent. Not to object when the neighbor's shop is vandalized. Not to help but to hide. From here, the steps into darkness are small and easy to make.

3. Action. Even small actions can bring an individual into darkness, can co-opt them. They can be brought over with one enabling act. It can be relatively innocent. Boycott a store because the owner is Jewish, Muslim, Hindu, hispanic, black, Irish, Asian, or any Other. Throw a rock through a window. Beware of those who encourage violence. Even just a shove and the perpetrator is on the long journey down into darkness.

That's all it takes. Even the best intentions, concern for the country's welfare, protection against a perceived threat, or devotion to an apparently harmless ideology, can be used to twist an individual.

There is a powerful moment in the documentary World at War, an interview with an elderly woman. Years ago during the war she was on a train in Germany. An air raid siren wailed. Everyone left the train. The woman was too tired to get off. She and a German soldier sat alone in their compartment. He started to talk. He told her about murdering Jews on the Eastern Front. How, before they mowed down the harmless farmers in an isolated village, the rabbi stepped up to them. "God sees this!" the rabbi said. It echoed in this soldier's mind until he lived in abhorrence of his own existence. He requested a transfer to a combat unit. He told the tired woman that he would seek death in battle. Don't be this guy. Don't travel into darkness. At some point in that dark journey, you, too, might wish for death to remove the stain.



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Links:
http://www.gofund.me/twjx8zs
http://www.rpbird.com/
https://twitter.com/rpbirdwriter
http://amazon.com/author/rpbird
https://www.facebook.com/rpbirdwriter

Monday, March 21, 2016

Event Horizon Blues

One of the many negative aspects of cancer recovery is the knowledge that I'm just not ready for prime time. A major tumor, like the one that was in the side of my face, killing it takes a lot out of the body. I'm walking back from it, but the progress is very, very slow.

To keep my mind alive, almost every waking moment of every day is filled with study - even if it doesn't look like "studying." I've been examining Star Wars: Knights of the Old Republic 2, the Sith Lords in detail over the last few days, playing the game a little, watching gameplay youtubes, and generally applying the analytic skills I honed in graduate school to a video game.

Why is this game so popular? It was broken and incomplete when released. It took a team of dedicated modders years to fix. Yet it still has problems. So...why? Three reasons. It's great fiction, taken not as an RPG, but as a kind of interactive novel, KOTOR 2 is a wonderful adventure. It is in many ways what Tolkien's books are to the Lord of the Rings franchise, the foundation stones. It has everything Tolkien's books have.

1. It is, in John Gardner's expression, moral fiction. Moral fiction  "attempts to test human values, not for the purpose of preaching or peddling a particular ideology, but in a truly honest and open-minded effort to find out which best promotes human fulfillment." Read Gardner's book back around 1979. It had a profound impact on me. Lost his books in the 2007 Greensburg Tornado.

2. The writing is vibrant and alive, with powerfully realized characters.

3. The story revolves around an epic journey by the protagonist and her allies in search of a great evil that is supernatural and at the same time all-too-human.

Just...wow.

So that's one thing I've been doing. I try to write a little each day. I read. Today I've been reading about the Holographic Principle. It inspired today's meme.






Please, don't forget to help out if you can.





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Links:
http://www.gofund.me/twjx8zs
http://www.rpbird.com/
https://twitter.com/rpbirdwriter
http://amazon.com/author/rpbird
https://www.facebook.com/rpbirdwriter

Sunday, March 20, 2016

DOS Wasn't Really That Bad

DOS wasn't that bad. I got along with it fine, but it had a bad reputation. But then again, my first programming language was Fortran.




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Links:
http://www.gofund.me/twjx8zs
http://www.rpbird.com/
https://twitter.com/rpbirdwriter
http://amazon.com/author/rpbird
https://www.facebook.com/rpbirdwriter