The Uncomfortable Subject; Bullying

Writing this article is very difficult. I'm revisiting old wounds that I've long moved past from, but I'm doing so to raise awareness to stop bullying. My local television station here in Orlando WESH2 is dedicating an entire week to raise awareness of bullying, cyber-bullying and beyond; which is hosted by anchor Jim Payne. In light of this week, I feel it is necessary to open up about my scarred past and encounters with multiple bullies during my elementary and high school years back in Kentucky.

Growing up sickly immediately raises the bar for any child going to school. Being born with Hemophilia Type-A severe, which means less than 1% of clotting factor in my body, I had no idea what was in store for me in the years ahead. By age three I contracted both HIV and Hepatitis C from contaminated Hemophilia blood products from Cutter Pharmaceuticals in the mid 1980's. Much like the stories of national news headlines of Ryan White and Ricky Ray, I too faced mountains of discrimination and bullying.

Being a hemophiliac, I bruise easily, so being like any kid, playing in the dirt, on my bicycle in my back yard at home, I acquired tiny bruises all over my arms and legs. There were times my parent's own care at home was questioned by the school board, but thankfully they quickly realized I was a hemophiliac and understood. But some of my fellow peers in school didn't understand the term bleeder or hemophiliac, and in that misunderstanding, lashed out at me because of my differences.

By age 8, I developed what doctors called a target joint as a hemophiliac, my right knee was injured around 3rd grade and I formed a noticeable limp. I was mocked, pushed out the way, butted out line in the cafeteria, and nicknamed "bruise." I will not mention names, nor will I ever, but about five of my male classmates developed a sport of mocking me in front of my entire class when the teacher would leave the classroom for any manner of time. Trash was thrown at me, and yet I kept going.

Bruise, cripple, peg-leg, hop-a-long were just a few of the names. But then, later in high school, the bullying increased, and verbal mockery became physical mockery. My books were knocked out of my hands, thrown down the hallways, purposely tripped and I was slammed in lockers. At one point, my entire right arm from shoulder to elbow was one massive bruise from the physical bullying. The only solace I found was in a handful of friends who were all girls. I found out that girls didn't mock or bully, so I hung around them as much as I could to escape any interactions with those that bully me.

Many nights, I would come home from school, close the door to my bedroom and cry silently in the pillow so my parents wouldn't hear my pain. I cried out to God, "Why do I have to be so different? Why did you make me a cripple to be made fun of?" The pain of those moments was incomprehensible. The dichotomy of my life from a loving home life, to being bullied waged a mental war within me that took me years to decipher.

There were moments in which I questioned the value of my own life. Why do I have to suffer so much pain mentally and physically? Why do people not understand me? Why does my body hurt and bruise every single day of my life? Why do my joints swell four times their normal size? Why do I bruise at the simple bump or flick of a finger? There were many times, I just wanted it all to end, my life included. For some reason, death didn't scare me, mainly because I encountered so much hate and anger in my own life. The only thing that kept me sane during all of this was the love of my parents.

The veracity of the situation molded me into the man I am today. I know what it's like being "that kid" in school. I know what it's like soaking your pillow with tears from not understanding life. As a man today, I see that God had a perfect plan for my life.

Looking back now, as an adult, I forgive each and every one of those individuals that did wrong to me. I don't hold grudges against any of them, and I pray they find the goodness of God and feel the joy that I have in my soul if they haven't already.

Unfortunately for me, I had to be thrown into an adult world at a very early age, and the responsibilities of taking my medicine on time, keeping up with my home IV's and being extremely cautious of my surroundings at all times molded me to become the very observant person I am today. Name bashing get's one nowhere in life, it only lowers us to the level of expectations of the source. What's the old saying, “Sticks and stones may break my bones, but names can never hurt me?” So true.

My message to those bullied, your life is so precious. God crafted you perfectly for a purpose, and even though right now you may not know that purpose, you're still one of His. We all have to live with the choices we make, good and bad, but you also have the power to change lives and do good. Sure I cried in pillows and questioned my creator for the hand He dealt me. Don't be bullied into silence, and left to deal with this alone, and never allow yourself to be the victim. Accept no one's definition of your life, thus do not be defined by what others say you are. I was called cripple so many times, but I realized I am not my disease.

It's estimated that over 160,000 children stay home from school daily, simply to avoid the bullying. Don't let small people reduce your great worth. Reach out, talk to a teacher, talk to a counselor or church pastor. You will get through this season of life, and shine brighter than any star the heavens have ever seen. You can do it if I can do it. I'm not defined by words, rather by my Savior Jesus Christ who molded me perfectly. Ephesians 2:10 says, "For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." I am not my disease, I am a child of the one true King. I am Joe Burke.

30 years, 9 months, 17 days

Hard to believe when looking back, but 30 years, 9 months, and 17 days ago I was diagnosed as having HIV. It wasn't until years later in 1988 that I found out I had Hepatitis Non-A, Non-B, which at the time there were no conclusive tests or discovery of Hepatitis C.

It wasn't until roughly 1992, blood tests were available for patients to confirm Hepatitis C. It all goes back to November, 14th 1983, when my mother got a letter in the mail no parent should be expected to receive [click the letter to the right to read].

According to my mother's account, she was instructed to check the LOT numbers on my Factor VIII concentrates to the numbers they provided to be contaminated batches riddled with HIV and various forms of Hepatitis. Sure enough, the numbers matched, and so began my 30 year journey into co-infection living with HIV and Hepatitis C.

Using www.timeanddate.com, I was able to determine something pretty astonishing; I've been living with co-infection for over 30 years. But, something this past Winter happened on February 11th, 2014 that changed my life forever. I started a new drug treatment on Sovaldi and Ribavirin, and within just 4 short weeks, my Hepatitis C was gone. When I say gone, I'm referring to "Undetected" Status. Clinical protocols require a Sustained Virologic Response [SVR] of 6 months post treatment to be 100% certain; which means if the virus remains undetected 6 months after treatment, it is in fact a cure.

The picture is of me and my father in Winter 1983, and as you can tell from my pajamas, E.T. was a huge hit the summer before. I was roughly 4 years old in this picture, and based on the date of the Hemophilia LOT numbers being contaminated, I was just 3 years old when I become co-infected. It's strange saying I've lived with two deadly viral illnesses for over 30 years of my life. This November I'll 35 years old, and hopefully, by God's grace, I'll still be Hepatitis C free and thrive to see 35 more years in 2049. I'm certain within this decade we'll see huge leaps forward in treatment and cures for HIV/AIDS once and for all. It's been a long time coming.

Funny feeling it is... seeing loved ones and friends pass away, living through the crisis of the 80's of the AIDS epidemic to this point today. I can only believe and know for certain I'm here for one reason, to be a witness of the miraculous hand of a True and Living God.

I don't have to search the world over 100 times for mysterious signs and wonders of miracles... the fact is, I already am one. I say that with boldness and confidence, not with pride. My family has endured enough trauma and heartache from this wretched disease Hemophilia. But if I'm the one to survive, then I'll be the one to testify of how awesome my Lord and Savior Jesus Christ truly is. Think about it, how many people do you know that has survived 30 years, 9 months, 17 days with Hemophilia, HIV and Hepatitis C whom are alive to share their story? Not many...

Day 159, To My Wife

There are times in life when many aspects of our lives are tried by fire to withstand the test of time. Our bodies may be put "through the ringer" physically and our minds can be pushed to their limits of break. But it's in these trials, we find true strength of the inner spirit, unconditional love from God the Father, and true love in every sense from those closest to us. I realize this story may not/will not apply to everyone that reads this post, as we've all come from many differing backgrounds and roads of life. I am thankful most for Jesus Christ and His unconditional love, and thankful for a loving wife who has endured so much with me over the past few years with love, compassion and kindness.

As I approach the end of my treatment with just 8 days remaining, I reflect on the true face of love in the eyes of my beloved wife. Not only has she seen my best moments, but has been there with me each step of the way to wrap her arms around me at my worst. While being on liver treatment, I've endured a plethora of harsh side effects, ER visits and long days lying on the couch in pain. From her hands of compassion, she's helped me back each time to regain my strength and physicality again. She does come from a nursing background and is a Registered Nurse here in Central Florida, just an extra blessing and nod from the Big Man upstairs; I must've done something right. Even beyond these past 6 months and coping with my vast array of hemophilia related injuries and disease related episodes, she's even helped administer my own factor VIII product intravenously on multiple occasions. From her eyes, from her hands and from her heart, she radiates unconditional love and joy, a true genuine side of who she is as a woman. A real companion is one that will face adversity head on without question and prepare for the next mountain to climb. A rarity this day and age, true love does and will stand the test of time, even beyond the grave.

I come from an "old school" mentality where we give those we love praise while they're here, not when they're gone. My father once preached in church, "Give them roses while they're alive, not when they're dead." Having almost completed Sovaldi and Ribavirin liver treatment, the past 6 months have been flooded with attacks on my mind and body. One thing has remained constant at the center of these storms, God's Grace and my wife's unconditional dedication. The past 6 months especially have been very trying on us, and my fits of riba-rage, mood swings, brain fog, lost in space and blah attitude I'm sure have not been easy for her. We've had clashing moments, and we quickly realized it wasn't me, but the medication talking. Like I said, she's truly seen my best and worst of times.

As I face the next chapter of my life, having slayed my dragon, and in just 8 short days am done with my treatment, I've been given a second chance at life not to become selfish but to give all that I am to God, my wife, my church and friends. This is a letter of new beginnings, of a fresh start on something that is already fantastic. God has given me a new life, both spiritually and physically, and I plan to do amazing things for His glory. I honor my wife today, the true rock in my house, the companion who needs to be recognized for the angel she truly is. True love is rare, and once found, will shake us to our core as a man or woman; if we even find it. Such is the same for my wife and how I feel about her. God gave me her blessing of love to not only take care of me, but remind me I'm worthy enough to achieve my dream despite limitations. This morning in church, we clasped hands and in our moment of worship stopped to embrace and thank God for our love and marriage. It's a humbling feeling to have found your soul mate, it's even a greater feeling knowing you will spend eternity with her one day. It says in Mark 10:9 "Therefore what God has joined together, let no one separate." Thanks Alexandra for being there, like I know you will be, forever and always.

Day 155, My Prayer Today

Thank goodness, the last couple weeks have been relatively side effect free. I've been utilizing this time not only in reflecting over the last 6 months and where God has brought me from, but also humbled with a heart of thanksgiving. Seeking treatment, in my case, has been a huge undertaking and might I add not an easy one. Over a year it took me bouncing from doctor to doctor in search of treatment, seeking hope of a cure of my Hepatitis C. The fact I'm finishing up on the final two weeks, and ultimately got the treatment I needed, and got the cure, is nothing more than a miracle from God Himself. Even more astounding, the medication comes with a hefty price tag of $1000 per pill, which is roughly $84,000 for 3 months or close to $170,000 for 6 months. God not only spared me of this financial behemoth, but at zero cost out pocket. I'm simply flabbergasted at how insanely awesome the past year has been from seeking treatment, finding it and taking the drugs themselves (Sovaldi & Ribavirin). I've had my share of struggles, but the clouds of gloom have evaporated, and the Son is shining so much brighter now than ever. Today, I officially have 12 days remaining, and for the first time while on treatment, I don't have headaches, I don't have congestion, sinus infections, riba-rage, mood swings or moments of brain fog. It's like removing a film from the eye as everything gets crisper, brighter and more vivid. The clarity I have now mentally is truly peace of mind, and the focus will not be on my own selfish needs, but sharing this testimony with the world.

I rejoice today, with heart of thanksgiving to honor my Lord and Savior Jesus Christ, who not only paved the way for my healing, but allowed me a second chance to spread the news of the gospel to even more. My years have truly been extended, my body is healing slowly after the 30+ year dragon that dwelt within, and my soul is on fire for God. “He must become greater; I must become less.” John 3:30.

Closing Prayer - Father in Heaven, I praise you and give you glory today and honor your son's sacrifice on the cross to give an undeserving man like me a chance to shine, not for my glory, but for yours. Lord I thank you for these past six months, I praise you for the struggles, trials and hardships as they've made me so much stronger physically and mentally. I rejoice in my suffering, because I know you have something truly amazing in store for me. I rejoice and give thanks for providing me with the hands of care, the doctor's and nurses involved during this whole treatment process. I pray you give them each a special blessing in their lives. Thank you Father for providing for my family, food on our table, clothes on my back, shoes on my feet and even more importantly a second chance at life. Lord in all that I do, I will honor you. Put a fire in my soul to be more like you, and therein help others around the world see proof that you still can heal. Forgive me Father for my sinful nature, and those things that I do that do not bring you glory and honor. In everything I do, everything I am, have your guiding hand in my life. It's in His holy and precious name I pray, Amen.