I organized my first LAN party back in 2002 and have volunteered countless hours in the fundraising efforts of the Idaho Chapter of the National Hemophilia Foundation. I even organized and promoted my first nerdcore concert back in 2011, and being a nerdcore promoter is ultimately my goal for the future. So when I finally decided to pursue a degree, the Business Administration with an Emphasis on Event Planning associates degree at Stevens-Henager was an easy sell.
One of my first classes was called Psychology of Motivation. During the class, we were subjected to a video of public speaker Ron Heagy. To tell the truth, I had a real hard time watching the video; or more accurately, listening to this guy drone on and on. Sure, it sucks he was paralyzed at such a young age. And I admire anybody who rises above adversity to succeed. At the same time, I am so sick and tired of being made to feel sorry for people who are disadvantaged, “Oh me, oh my, what am I complaining about, my life is so blessed. At least I don’t have to use a wheelchair or a machine to breath for me.”
I was born in 1972. At four months of age, I was diagnosed with Hemophilia A Severe Factor VIII deficient. In the 70s, hemophiliacs received Cryoprecipitate, frozen blood product prepared from plasma. I received my first transfusion at 10 months old. Back then, hemophilia treatments didn’t have any safeguards in place and my blood was infected with non-A non-B specific hepatitis. In the 1980s, pharmaceutical companies began to sell HIV contaminated Factor VIII even after detergent-washed and heat-treated versions were available. During this “Hemophilia Holocaust” every infusion was akin to playing Russian roulette. I constantly heard the word “No” from my mom when asking to play the same as my little brother. I skipped numerous infusions in order to lessen my chances of contracting AIDS. My mind, body and soul all bear the scars of living through this period of time.
What principals do I live by? I start by thinking of my Uncle Jim, diagnosed with hemophilia in 1917, who was a cowboy and a truck driver (before air compression seats so his internal organs were shaken till he bled internally all the time) and lived without all of the modern conveniences of today’s medicines. I think of my three hemophiliac cousins who all died from either HIV infections or from full-blown AIDS. Yet until their deaths, they still went to school or rode motorcycles or had jobs. Or my cousin who was born with Cystic fibrosis and is now one of the longest living CF patients ever. He is in his 50s and he was a police officer in Alaska for years. Then there is my cousin who was born with spina bifida, hydrocephalus, and Arnold–Chiari malformation yet graduated from high school, found a job on her own, bought a car and had it fitted with hand controls, refusing to park in the handicap areas but instead using her crutches to walk across parking lots to her job or when she went shopping. I live my life in honor of the 10,000 hemophiliacs exterminated by the pharmaceutical companies. I live every day with one thought: “Pain is just weakness leaving the body, I have no weakness, and I am relentless!” If anyone would like to see or meet the strongest of the strong – meet a group of hemophiliac mothers. These moms are devoted to their bleeding children. These moms have taken on the medical fields in countries around the world demanding the best for their children. More than one-half of these moms are bleeders themselves. These moms fight with the government of the United States on a daily basis trying to get help with the exorbitant amounts of money needed to care for their children. 15, 20, 30,000 dollars a month is the norm and not the exception.
Ron Heagy is probably a wonderful person and, yes, he has done some remarkable things since his accident. He should be applauded for persevering under these circumstances. But I found his overall presentation to be self-serving. Not every person believes in God and Mr. Heagy’s continued insistence that God has been with him throughout his ordeal is something a non-believer would resent hearing. A non-believer who has not seen any happiness in his own adversities would more than likely shut out anything Mr. Heagy has to share.
It appears to me Mr. Heagy uses his non-profit to help support himself and his family, helping disabled persons only as an after thought. And as I listened to his video, I visited his web site where I noticed he has trade-marked “motivational” sayings throughout. The more I read and the more I listened, the worse the taste in my mouth became. Where are the true hardships he endured? Walk a mile in a hemophiliac’s shoes and tell me who has risen above adversity, who has embraced life’s challenges and said “Never give up!”? At least Ron Heagy had 18 years to live a normal life. I and my cousins and brothers and sisters with bleeding disorders wish we could have had 18 years of a normal life.
Leave a Reply