Friday, June 14, 2013

What You Don't Know About Tommy Refenes

It's not often a sister can say "my brother saved my life."  But I can.  Not a lot of sisters will boast about their brothers.  But I do.
 Today is my brother's birthday.  A huge number of people have watched Indie Game: The Movie, played Super Meat Boy and enjoyed interviews with Tommy and Edmund.  Tommy comes off, simply said, as kind of an asshole and arrogant.  I think my friend Nicole said it best; Tommy is very intimidating when you first meet him.  He's very sarcastic and brutally honest- a honesty that is not sugar coated and is his very true opinion.  Others perceive it as arrogance, but as Nicole said, once you know Tommy his personality is lovable.  He doesn't say things to win popularity contests, that would be fake and Tommy is completely genuine.

I guess you can say Tommy is like a... junior mint?  Hard on the outside and gooey minty inside?  Fine.  I didn't want to say it, too cliche, but Tommy has a heart of gold.

Tommy and I have always been very close as brother and sister.  Our bond is very untypical and always have been.  I was as much a part of Tommy's video game education through his childhood, I was always beside him watching him play; from Super Mario Brothers and Legend of Zelda to Super Mario Galaxy and The Legend of Zelda: Ocarina of Time.  We spent a lot of time together, we never had typical "brother/sister" fights.  He always protected me and talk about my accomplishments to his friends and vice versa.

Tommy is a very giving person.  Before Super Meat Boy, as a family we always tried to donate presents to needy kids on Christmas, Tommy would say "if I ever get rich I want to buy these kids bikes!" And he did.

Tommy had taken me to a Valve meeting and dinner the Christmas right after the Super Meat Boy release.  (I told Gabe Newell that "I was Tommy's brother" and made a fool of myself.)  That night back in the hotel, Tommy checked his bank account and saw he received his first Super Meat Boy check.  What was the first thing Tommy did?  Without hesitation, he calls our parents who are back in NC and asks them to go to Walmart, get any remaining names off the 'Salvation Army Giving Trees' and to buy them everything they want.  It was 2am back in NC by my parents were more than happy to do it.  They ended up with 4 bikes, tons of clothes, amazing toys, coats, shoes, basically everything above and beyond what the children had asked for.  Our whole family was in tears, we were finally able to do what we had always wanted to do, because of Tommy. Tommy does things every year for children but there are times we do not know because he does not do it for recognition he does it because he loves children to be happy.

The things my brother has done is simply astonishing and I'd like to believe anyone with new found wealth would do the same.  But what sets Tommy apart from any other person with money and heart is what he has done for me.

Tommy has literally saved my life.  I mean it when I say that literally.  If it had not been for him I would currently be, most likely, permanently in a wheelchair or 6 feet under.  Families are suppose to help each other; but there is a point when that help can go breathtakingly over and beyond.

I have a number of very difficult and debilitating diseases; I was infected in 1997, diagnosed in 2008 and began my major fight in 2012.  Between the end of 2008 and the end of 2011 I went through numerous medical tests, surgeries, etc.  The medical expenses kept me back from leaving my parents house and going out to have fun or just even shopping.  My brother wanted me to have a life and surprised me by paying the entire medical accounts off.

Mid 2012, almost exactly a year ago, my health bombed drastically, nose dived straight down to rock bottom. Suddenly I lost my ability to walk and talk.  Minimal treatment would have helped but this was no where near good enough for my brother.

I have not had health insurance in SEVERAL years.  I've been told numerous times that I am "too high risk" making insurance premiums unaffordable. All medical expenses since 2008 have been completely self pay- or rather in a pile of bills several hundred pages thick waiting to be paid.

After several weeks of research with the help of my parents and Tommy I found the nations leading specialist on my diseases.  Despite the extreme cost, there wasn't even a waiver or flicker of "no" in Tommy, he set me up with an appointment as soon as possible.

I was deteriorating quickly, and we, as a family realized the severity of my illnesses. My brother vowed to pay any expense to get me back to 100%, and one year later, he is still holding his promise.

I speak to my doctor monthly, fly 2,600 miles across country every four months to see my doctor, my medication- I have over 15 different oral prescriptions, over 35 supplements, ridiculous amounts of IV bags and medications (today is bag number 266), four separate injectable medications, expensive medical testing, and several medical procedures... Did I include airfare, hotels and rental cars?  Not just for me but for my mom too, and Tommy also flies in to attend my doctors appointments with me.  My parents and I try to pay what we can and Tommy pays ALL the rest.  You know that beautiful Tesla Roadster Tommy has?  With what he has spent on just my medical expenses he could have bought two more of those...

I would simply hope that anyone with money with a family in a situation similar to mine, I'd like to believe they would do the same.  But I've met several families and people where that is just not the case; nor would they continue to help so much for so long.

Last week I had a visit with my doctor, it's been one year since my legs stopped properly working well.  We learned that this treatment will take much longer than expected.  I'm strong, I will get better, but not without Tommy by my side (and I'm not just speaking monetarily.)  He is a major encouragement and inspiration to me.  He does everything and anything to make me happy and feel better during my worst days.  He knows what silly and ridiculous things to say and do just to make me laugh, and since I've lost some memories he reminds me of jokes and memories from our childhood.  (He reminded me the other day of our love of Carl Winslow and his magically "disappearing" stapler trick hidden in his jacket.)  On top of all the medical expenses he spends money, for example, to take me to PAX just so I can get out of the house and do something fun.

So that's Tommy Refenes in a nutshell, the REAL Tommy Refenes.  The charitable loving heart of gold mixed with some annoying-ness, intelligence, and of course some asshole-ness.  He deserves to be recognized for what he does, he deserves for others to know what kind of person he really is.  I can not possibly thank him enough.

I am so proud of him; not just because of the video games but his generous heart and continuing to be the sweet (asshole), loving (jerk), he's always been and will, without a doubt, forever to continue to be.  Thank you Tommy for being the strength that keeps me up and stops me from giving up.

HAPPY BIRTHDAY, TOMMY. . . I LOVE YOU! <3