At Pocatello, a couple of people who are medical staff asked why I didn’t use the speech to advocate more for brain cancer research money… or for Livestrong… or for universal health care. I think all of those things have been done in here in one way or another but the other thing that I’m made clear is that core of my message is share a healthy life with people you love. That’s the number one priority in my life and number one messages and everything else is a far second, 3rd etc. But there are days where you understand exactly why those other causes need more advocates and why some people make it their full time energy. And for me, today, today is one of them.
By coincidence, today was the first time ever that I had my latest medical bill and utility bill side by side. The utility bill had the last 12 months worth of usage, the rates at this level, that level and how it broke down into electricity, garbage disposal, water use and waste water use. The medical bill said office visit and the amount. For each one, the amount had been different than the previous three times. This is exactly the way the last 4 of each bill have used… the difference being that the utility bill explains why it is different and there’s some explanation, the medical bill says nothing. I am a guy without health insurance and in simple financial terms they are literally making more money from me now than they did when I health insurance. However, in Texas, you can’t get health insurance once again until you’ve been cancer free for 5 years, something I may never achieve (there are those who theorize this may change when universal health care kicks in but even our patient navigators say they aren’t clear as to how that will pan out in this state since our governor is a steady opponent of the federal law). I called and tried to get an explanation last time and the time before to no avail. I am brain damaged but still aware that there are things like restaurants milk and car gar and utilities that have ups and downs but they have to provide some explanation and you have some some choice in the matter and awareness before making the purchase.
It doesn’t have to be this way. Let me make this clear, all my doctors, whether Friedman or Desjardin at Duke or here at Seton, Perurena and Valiant here in Austin are brilliant, trustworthy and amazing doctors and humans. Their character and the years they put in medical school make them worth their weight in gold. But there are multiple views of the health system I see. At Duke I pay when I get in and that’s the bill for that day with no set time or anyone feeling like we’re rushing things, at the MRI and at my pharmacy, there’s a way to budget because they charge consistently (a simple reality I knew what my MRI in December was going to cost at the beginning of the summer). At Seton, even though I asked since my last medical appointment, approximately what the next one would cost, no one would provide even an estimate. This was not an emergency appointment or an ambulance ride, just a standard scheduled one. Three of the four appointments felt exactly the same but the bills were all different.
Just so it’s clear, I am not sure that universal health care is a clean cut equation. In car insurance, if I have accidents or tickets, my costs go up every six months for a while whether or not I have another claim during that time; I believe that to be fair. In health care, if I choose to engage in self destructive behavior like being lazy, drugs legal or otherwise, or slowly commit suicide with a spoon and a fork, and it eventually costs me some serious health benefits, I am not sure that the rest of society should have to underwrite that unevenly. With that said, if you have a cancer like mine which has no known genetic, lifestyle or environmental components, I’m not sure that it’s just that you should have to fund that either. How to balance that like car insurance or home insurance or which one is more unfair I will let more intelligent people than me debate.
There are those who thought that various government program like social security, world war 2 the Iraq war and now Universal Health care were shoved into the American world by various presidents’ bully pulpit. I don’t know what to say about all that but I’ve used most of my speaking circumstances to promote exercise and more efforts at relationships. With that said, I have turned down a couple of invites both local and otherwise that would have robbed me of time with Kiana because I’d rather do it than talk about it anytime. But I am well aware that those who have made some of the best mistakes and worst awesome decisions (yep you read that correctly) are absolutely neccessary for humanity to improve and for the good in humans to win. But I hope we invited electricity, the internet, better health care not because they are their own end but because they let the connection be easier and more long lasting. The worst cells in the body are things like cancer which just consume at the damage of everything else. There are those who would argue the best ones are the white blood cells which have a short life span in order to save other cells. Perhaps the argument is the best ones are the ones that find a balance between the give there. That can be said of the food chain etc.
There were remarks made against universal health care having “death panels” about financially deciding what was worth giving medicare money to buy people a few more weeks or months versus costs. You can decide what you think about that but I have three things that I keep track of, two of which have been mentioned in here (even the guy who rarely censors has one very significant thing he’s never shared with anyone). If there ever comes a day where my neurological capacities go below a certain level or if there comes a point where the medical bills go above a certain point (as I’ve said multiple times, I am not leaving my kid broke. I’ve accepted limits in many areas even swallowing some of my machismo to get more time with my daughter but leaving my kid broke isn’t going to be one of them or watching people say goodbye to a guy whose been long gone and is only an echo inside a body won’t be another. Some good friends have said they would go into debt for the rest of their lives to spend more time with their parents who have illness and/or have passed away but I’ve not heard any who have said so about inflicting that on their child). If those or the third (insert whatever you want to imagine) that is the day that it’s time to take advantage of Texas’ other law, futile care which allows you to refuse medical treatment that you think is not helpful. That’s the day it’s time to realize I gave it what I had but you can only put off dying for so long. Then I pray and hope I have the courage to recognize all I've got left to give is to become a white blood cell and not a cancer one.
With that said, I think like my utilities, or my grocery bills, my medical bills are for me a fact of life. But I do not think that it is unreasonable to ask for an explanation. So on a friend’s suggestion from the medical field who knows that I don’t want to just complain but to at least attempt to reach a goal, I am going to be working on a letter asking for an explanation of why bills all which state nothing other than office visit have such variance and why literally no two match. I am not arguing that I should not have to pay the bill nor that anything is unfair just asking why they all come with two words and different pricse. I have never missed a medical payment per the agreement we’ve got so. Will I get an answer? I don’t know but if I don’t ask, I certainly won’t. I am sure that it’s become money makes the world go around and even ESPN has said that they sometimes film pieces they decide not to continue for financial reasons. I may well decide one day that my dying is more financially beneficial than me living for my daughter so I have no great argument against that. With Seton however, I don’t think it’s unfair to ask because literally my life, the custody of my child, my driving privileges, what substances I can and cannot take is based on their guidance but I am not six so can you give me some explanation as to why you bill me how you do?
And while we’re in the process of asking for things that may go unaswnered. When that lawsuit ended, one of the people commented on my facebook status that I had over a hundred likes and tons of people comment on my facebook status about court and that Andre Dumouchelle made a remark that had 5 likes and 4 comments (picture here in attached). I sent him a message then stating plainly that while I don’t feel I owe him any apologies for any of the situations nor do I expect any, if he really wants to agree with the judge that we should focus on the best interests of my child that he could pick a place and we’d go grab a beer and that outing is definitely one I’ll pay for. Unsurprisingly, that offer went unanswered but the offer stands as long as I am standing and as long as he’s involved in Kiana’s life.
People have asked if I’m not angry about having cancer (who am I supposed to blame for that?). They have asked if the feedback I get from the “inspirational” stuff doesn’t make me think that maybe this is why this all happened (I don’t spend any time thinking about this). Or they have asked if the fact that the birthday I am so fond of 8/8/80 which is father’s day in some Asian country make me realize that I was supposed to be a good dad. I don’t know who makes those types of decisions in the universe and I certainly have no capacity to speak for them. In regards to those things, I simply think of Lord Tennyson that ours is not to question why ours is but to do and die.
Those things are beyond my scope but billing, parenting, communication are well within the human scope. So Seton will get a letter from a guy whose released medical consent for them to talk to the media, his exwife, a guy who unless I guess it pisses them off enough comes out in an ad for them in a couple of weeks asking for nothing more than an explanation. And Andre who says I publicly slander him now has a chance to show that he can be the bigger man and we can put aside our stupidities and if nothing else open up communication for the sake of Kiana.
I ran today and those were the thoughts I couldn’t dismiss. I put my daughter to bed and still hadn’t dismissed them. One of the shifts in my neuropsychological report is that I’ve become more impulsive and you may decide that writing this or committing those actions reflect that. Maybe the invitations will cease because I talk like this from my primary pulpit which is this blog (I’ve never said anything like this in an actual presentation, my social skills aren’t that bad in person among strangers). But today while limping from the marathon, I walked Kiana to class. Most days I can outrun a lot of humans and today I struggled to walk with six year olds. And on days, that I'm frustrated, and this blog and the running don't seem like quite enough therapy, I step back and breathe. And my memory is not bad enough to where I forget the only reason I care about my health is because Kiana is the brightest star in the Universe.