I met Shelby Jones in May 2012 in Ventura, California shortly after I arrived in North America post spending three and a half years training muay thai in Thailand. Shelby was among one of the first people to ease me back into Western life by virtue of simply hanging out and being non-judgmental of the re-entry shock I was facing (thank-you). It was through her that I learned of American kickboxer Mark Fightshark Miller. Shelby is both Mark’s friend-meets-family and strength and conditioning coach.
Mark has been training and fighting in combat sports for years. This was halted by open heart surgery in 2007 due to a congenital heart defect (CHD). In 2011 he returned to the ring to fight Nikolaj Falin in Moscow. Mark defeated his opponent within nine seconds and became the first fighter to return to the ring after open-heart surgery. He continued to compete and was scheduled to fight at GLORY 12 in New York this past November but was unable to after the bronchitis he had turned to pneumonia which later led to congenital heart and renal failure.
Mark is currently healing, at home and on dialysis. As an American fighter lacking medical insurance the hospital bills are adding up in a way that has wiped my Canadian brain clean. In Canada we have national (re: generally free) medical insurance. Mark was unable to obtain American medical insurance due to his pre-existing conditions of CHD and Type 1 diabetes. From Mark’s Facebook page and in his own words dated November 27:
I have kept a stiff upper lip.
I have remained optimistic throughout this entire situation, taking the good with the bad. Every procedure, test, new diagnosis, I’ve rolled with it. I’ve done everything the doctors have asked of me.
Today was the first day that I felt truly sad, and it wasn’t for myself.
Today the pharmacy phoned to let me know that one of the seven medications I take a day, (all are necessary for my survival) has been raised in cost. The original cost of this medication was $695 a month. The cost in one month has been raised to $856 a month.
For one medication.
My prescription costs are over $2000 a month.
Before you go asking, I’ll tell you. I am one of the many people that live in this country who can not get healthcare because I was born with not one, but two congenital disorders, rendering me, as far as the country seems to be concerned, not worthy of being alive.
I tried to get healthcare. Because of my chosen profession I go through fits and spurts of being more flush than others. I sought out insurance once, figuring that paying a little more would make it worth not having to shell out $500 a month for diabetes meds, plus I’d get to see the doctor, if I ever got sick.
Only one insurance company would even consider insuring me, and that one offered only a major risk policy which would not cover prescriptions, or doctor visits. The cost of this policy? Almost $2000 a month. As you can probably guess, I said no to that.
So here I am, a professional athlete, soon to be published author, and trainer. I have taken better care of myself than most people do who don’t suffer from any sort of congenital condition. In fact, my endocrinologist recently said, “despite having recently been diagnosed as being in renal failure, you are one of the most responsible and healthy diabetics I have ever met.” When I entered the hospital my hemoglobin A1C was at a 7, while I was in full kidney failure. ALmost an unheard of number for a person that has had type 1 diabetes as long as I have.
Up until recently, my diet has consisted of organic lean meats and vegetables. I eat no processed food, no sweets. I drink only water and black coffee. I exercise around 2 hours a day, and I meditate for an hour. I stretch. At least I used to. Now, I walk around the block, subsist on a restrictive renal diet, and sleep a lot.
I did everything right. But it didn’t matter. I was gifted with CHD, and a marker for type 1 diabetes which I developed as a child. These things alone make me disposable to the country in which I live, and contribute to.
The hospital bills I have racked up are unimaginable. The doctors visits continue to climb. I see the worried looks on SHelby’s face, and I feel awful every day that she, her mother, and my friends have to be the ones to help me now. I have to rely on people. I can not get myself out of this.
The truth of the matter is, I have some people I can rely on. I am not homeless, I have food to eat, and hopefully I will continue to be able to afford my meds and doctors somehow, at least for awhile. There are people who would never be able to afford any of the little bit that I can. That makes me feel so sick inside.
What kind of a place is this, what sort of people are we if we do not make every effort to help our own. Instead we punish anyone not born perfect, we rake them over the coals at every step. We fore them to pay for being who they are. Is this Gattaca? When does it all stop?
$2000 a month. That’s a mortgage. That’s a place for me to bring my children to. A place for me to build a life. That’s 24 thousand dollars a year, just in medication. Instead, I hand it over every month to a person in a white lab coat behind a desk so that they can ensure that those pharmaceutical people have a few more bottles of Cristal at their parties. I am nothing to them, a number, a blip that that they intend in every way to squeeze until it flickers and blinks out.
I don’t know how, but I want to get more involved in this cause. I cannot allow for this to go on any longer. Not to me, and not to anyone else. Socialized medicine has to be the goal. It just has to be.
Until then, I share this again, and I thank you, humbly. I am honored to call you all my friends.
A GoFundMe campaign as been set up to assist Mark by fan-become-friend Jen Lepp. Their story, in Jen’s words (taken from the campaign page):
Almost three years ago, my husband yelled at me from across the house to come watch this report from Inside MMA because a kickboxer was on talking about having a Congenital Heart Defect and his open heart surgery. As a family that owned a martial arts school for years, and a family that had dealt with a child with CHD for years, we were pretty shocked.
I tweeted about it, and to my surprise, Mark “Fightshark” Miller tweeted back. What initially was a distant recognition turned into a friendship of two families with a common bond, as soon after we met Mark and Shelby, my son Jacob underwent his third open heart surgery with Mark and Shelby in *his* corner.
It’s our families’ turn to return the favor and be in Mark’s corner.
Last week, Mark fell ill and this week, he found himself in the hospital grappling with CHD yet again. Unfortunately, as a professional kickboxer Mark is self-employed and due to having CHD as well as Type 1 Diabetes, he has been medically uninsurable on the private market and currently has no insurance.
In just three more months, a medical catastrophe of this caliber would have cost Mark no more than $6,350 (the Affordable Care Act out of pocket maximum per year). Because it happened now, the bills could potentially rise into six figures.
It’s hard for us to do anything as Mark fights this fight in a Ventura County hospital, but this we can do. I remember the terrifying feeling of watching every medical action while wondering what it cost, of feeling overwhelmed because even if you don’t know how you’ll pay when it means life or death, it’s not a choice.
Mark has advocated for greater CHD and Diabetes awareness, has reached out and befriended other CHD survivors, has talked to parents to help them understand their CHD kid’s perspective. He’s a fighter, and he encourages other people to fight.
Please help support making his fight a little bit easier, and toss a few bucks in (or more, if you can spare it).
**Please note that this is being done with Mark’s full knowledge/permission/access. Though, frankly, if he hadn’t grudgingly said ok, I probably would have done it anyway.
If you’re interested in helping Mark, please donate here.