It was the first hot day of spring, 2009.
I remember the first thing that popped into my head when I pulled the letter from my P.O. box was “Wow, whoever sent this has exactly the same handwriting as me!” - That thought was quickly replaced by a strange cocktail of shock and dread. The small off-white envelope was from my biological father. What could he possibly have to say to me? It’s been at least thirteen years since we last spoke and that didn’t end well. Was it a death bed apology for all these years of absence? If so, would I accept it?
I waited until I got home to read it.
Safe on my couch I tore the envelope open. It started off much less personal than I had anticipated - he said that he had ordered my books from Amazon, that was how he found me - he said although he enjoyed my writing he wished to defend himself and that he was not the monster I had made him out to be in my stories - at this point in the letter I felt the emotions you’d expect - lots of anger and resentment, some sadness, lots of questions - but as I continued reading the subject matter took a strange turn…
“One of your young cousins you never met just died of an embolism… He had a rare but sometimes fatal blood disorder called Factor V Leiden. You and your brother should get tested immediately”
Oh.
Thanks, dad.
Factor V Leiden causes hypercoagulability in the blood. There’s a protein whose job is to tell the blood when it’s time to stop clotting - but that protein, with Factor V Leiden, does not work properly. So the blood clots into a bump on an artery, then a long string starts to form, anchored to the wall of the vein - blood continues streaming by and along the string form little bulbs of clots - much like a string of kelp - swaying in the sea - until one day the entire mass snaps off and goes with the flow… Ultimately ending up in the heart or the lungs.
So I got tested for this thing the week I got the letter and the results came back positive.
After a tiny bit of crying and a lot of self pitty, I ordered a medic-alert necklace online and tried to go about the business of being my normal scatterbrained multitasking dreamer self.
I have to look at it like this, nothing has changed aside from my knowledge of the situation. But I’ve made it this far just fine…
So now I live with grossly increased risks of stroke, heart attack, pulmonary embolisms and deep vein thrombosis complications. Or, to be more clear, I am now aware of the fact that I have always been living with these time bombs ticking inside of my body.
I could get on blood thinning medication, but the list of side effects and the possibilities of non-stop-bleed-to-death car accidents and bar fights mean, for now, sitting around and waiting for the blood clots is my best bet.
Ultimately the diagnosis has not changed me much - I eat right, exercise, I don’t smoke anymore - I’m healthier than I have been since grade school. Besides, I’ve always tried to live my whole life like I could get hit by a bus at any time - Only thing that’s different now is there are now a few more buses out to get me.
My doctor says I should be very paranoid and vigilant with my body, especially my legs and that I should see a specialist or go to the emergency room if I feel anything strange, any weird pains deep in my legs or my arms. If there are any bruised or reddened areas, warm to the touch… All duly noted. Thanks Doc.
A couple of months pass without incident until one weekend, after returning home from a trip to Kansas City where I played a show, I found myself rubbing my right calf a lot - the area was warm and achey - I had taken a total of four plane rides on that trip but I did my leg stretching and exercises mid-flight like I was told to - but there was this dull pain deep inside my leg that would not go away no matter how much I tried to ignore it.
Eventually my wife noticed my slight limp and how I was absentmindedly stroking my leg while we sat on the couch watching movies…
“I’m taking you to the doctor, let’s go,” she said.
“What? It’s eleven at night, we can’t go to the emergency room for this.”
“I’ll grab your phone for you, get your shoes on.”
I can’t argue with her when she’s like that - Not that I should, she only gets like that when she’s right.
We arrived at the hospital at 11:15 and checked in.
Then we waited for two hours with the bruised and the bleeding before a nurse took me into what looked like a trauma room, complete with leather restraining straps on the bed and an operation mirror lamp.
For the following two hours my wife and I played a game of “Spot the Spot” - finding tiny blood spatters on the floor-runners, the handles of cabinets and on the ceiling…
Making what could be a much more tedious story a little shorter; By 6:30 am I was discharged from the hospital having had one ultrasound procedure done, to listen to the blood flow in my leg. They found nothing out of the ordinary and we went home.
Less than a month later I received a letter from United Healthcare’s DEATH PANEL just letting me know that they wouldn’t be covering me for anything that might happen to me having to do with my blood disorder because it is a pre-existing condition. In other words, if I were to have a heart attack or a stroke or anything even remotely having to do with blood clots, I’m shit out of luck. Not like they’d pay fifty percent instead of eighty percent, not like they’d send me to a doctor of their choosing instead of mine, not like they’d recommend a less expensive method of treatment, just NO. Sorry. United will not cover a penny of my expenses.
I understand, I can see their point - It’s my fault I was born with a blood disorder less than 5% of Eurasians of carry.
It’s my fault I’ve been paying my hard earned cash every month to this gang of white collar racketeers, all the while thinking I was buying some sort of peace of mind. It’ my fault I’ve been dumb enough to think “If anything goes wrong, I have health insurance to take care of me.”
My doctor said to take any abnormality seriously - go in whenever I notice something weird in my limbs - Now I have bill collectors coming after me for three thousand dollars for my little emergency room visit.
Before I go head first into the “Political” part of my story I have to say I know I’m running the risk of being tuned out when I bring up The GOP and the town hall screaming matches of the Big Med funded astro-turf movement - but it’s really related to my personal story.
People are saying Obama’s administration is planning to set up DEATH PANELS - groups of people whose job is to evaluate each policy holder and their medical situations and decide on a case by case basis who lives and who dies.
This has people outraged, and rightly so if it were true - The confusion stems from end of life counseling - which is when a patient talks with their doctor about what they’d like done medically if they’re unable to express themselves. I personally would no like them to fill me full of drugs and machines and tubes and keep me “alive” at all costs. I would like to die with some dignity and not be put through years suffering while the insurance company racks up the bills.
My point about the Death Panels is that we have been living with them for years - My insurance company, United Healthcare - (who, by the way is also the Lewin Group - leading defenders of, well… themselves) - United spends millions paying staff whose job is to find ways to exclude people from coverage. Find ways to fuck their policy holders out of the treatment they need in defense of the company’s bottom line instead of working with the best interests of the patient’s health.
I watch the arguments on TV and wonder how much these right wing assholes must be getting paid by the Healthcare Industry to take their side. Maybe they don’t get money though, maybe they just get to be on some “No small print” list - Maybe they just get the premium treatment where if they need medical attention they’ll get it. Lucky elitists.
People like Sarah Palin are spreading lies about the coming government death panels who’ll decide the fate of our citizens. They have obviously never been told by their private insurance companies, “Now that we know there’s a good chance you’ll need medical attention in the near future, we’ve decided to cut you off.” I wonder if her special-needs baby will ever have to deal with this regarding his pre-existing condition.
They talk on TV about how a government run health care program would mean government people getting between you and your doctor, as though having a bunch of people at United Healthcare working around the clock to find new ways to fuck people out of the treatment they think they’ve paid for is any better.
These congressmen and governors, these government employees suddenly think it’s a good thing for us to be afraid of our elected officials and their ‘marxist’ ways. (meanwhile they’ve forgotten about the 700 billion dollars stolen from the public as a final kick in the ass from the Bush administration.) These people probably couldn’t define Socialism if they were asked to.
If they think it means big government, they’re only partly right.
In a lot of ways I think the government is too small. I want more.
I want it to be illegal for insurance companies to exclude patients for pre-existing conditions. I want there to be health care options that I can afford. I want to know there will be a doctor cutting me open or stitching me up when I need one, regardless of whether some prick at a desk somewhere thinks I’m worth the money or not.
I want laws in place to protect me from corporations in the health care industry - not the other way around.
I want it to be mandatory that people buy health insurance, private or public, just like it’s mandatory that we all have car insurance. People without car insurance drive up the premiums for all of us, so much that government now requires all drivers to have car insurance. Is that Socialism?
I want the electricity and the water that magically come straight into my house to keep on coming, safe and reliable as always. I want the roads I drive on to be smooth, I want the cops to come when I need them and the firemen too - I want the mailman to bring those checks to my PO box - I want the airlines to be monitored and regulated, I want the food I by at restaurants and grocery stores to not make me sick.
If that’s socialism, then sign me up.
Eric Victorino, Campbell, California.
