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Celebrate Life!

Growing up, I always knew that I had a “bleeding disorder” but I never imagined that it would impact my life like it has. When I was a freshman in college my life came to an immediate halt when I developed two massive muscle bleeds at the same time: in my right quad, and left hip. This episode almost caused my right leg to be amputated and bound me to a wheelchair and crutches for several months.

I hated my life and was as depressed as a person could get over the unfairness-the “why-ME-ness”-of it all. I couldn't accept hemophilia as a part of me. I hated the pain that I felt every time I gave myself an infusion and the many times I blew a vein, which caused immense pain to my hands and forearms. I despised the names that I was called at school like "freak" or a "faker" every time I was on crutches or had an IV left in my arm, as well as the lowered self-esteem and confidence that I constantly felt because I was different. I resented relying on my parents and brothers to carry me up the stairs for months while I was in a wheelchair. I also resented being constantly told that I couldn't play sports for the rest of my life because I was a bleeder. I hated being ashamed about my port, because it made me feel different. I felt like a complete outcast and that nobody could truly understand me. I detested missing my classes at college due to the frequent bleeds I had. It seemed that every time I took a step forward, I fell three steps behind. I hated blaming God for my condition and always being angry with Him for giving it to me. I was desperately losing all hope and faith not only in God and others, but also in myself. Life was getting the better of me; I was dogged by monsters I could never hope to defeat.

I fell into a depression as deep as an abyss, for I honestly did not know how to accept hemophilia as a part of my life. From now on, I had to understand the importance and severity of my condition and alter my life accordingly. Although this was one of the toughest obstacles I had ever had to deal with in my life, it taught me more than any textbook or even sympathetic individual, could. Being confined to a wheelchair for months gave me lots of time to think, to cry, and to pray-it changed my life forever.

In fact, after withdrawing from school, I truly hit rock bottom because I had no hope and faith in anything. I felt like my life was a merry-go-round and that I was never going to break that cycle. For months I could predict exactly what was going to happen the next day. I would wake up around seven. My dad would lift me out of bed and put me in the wheelchair. He then would help me take a shower. From there I gathered my factor and he and my brothers carried me down the stairs to the car. We then sat in traffic on the interstate for approximately 15 minutes and took the exit to Rhode Island Hospital around 9AM. From there, my dad took me out of the car and placed me back into the wheelchair. I then spent the next four to six hours in the HTC for aggressive physical therapy and repetitive blood work.

My father would then come pick me up around 2 o'clock in the afternoon and go through the same procedure of getting me back into the car and drive me home. On the nice days I would sit outside until my dad got out of work and on the rainy days I would sit in the wheelchair and just think about how much I despised my life. The more I focused on the negative aspects of my situation, the more depressed I became. We usually ate dinner around 6 o'clock in the evening. Then, I would wheel myself back into my room where I would usually brood some more.

During that dark period in my life, I never read a book or watched TV. I just thought about and concentrated on how much I hated my life. How much I couldn't stand to be alive. I wasn't growing during this time; I was dying because I was focusing on things that I couldn't change. People around me started to notice how depressed I was getting. I would cry for no reason at all and just burst out "God, I hate you, why did you have to do this to me?" I began anti-depressants and that, too, seemed like it wasn't working. So my doctors kept increasing and increasing these little pink pills until I was told that I was on the maximum dosage of Paxil. It seemed as if I was watching everybody else around me live a "normal" life while I sat, helplessly confined in that chair. I didn't know when this cycle was going to end and I figured that it never would…until one day.

It was a chilly, overcast day in the month of June. I had just gotten back from the hospital and I was sitting in the wheelchair in my room starring at the crucifix above my bed. As I was staring at it my eyes began to water, and I felt this anger just fill up every single inch of my body. I could feel the heat and the redness just roll over me and I remember losing it, I remember just losing it. I started screaming out first in anger at God and then I began to weep; I began to weep, not like I always had--this time was different. I looked at the cross as I was shaking and crying and told Jesus that I couldn't live my life this way. For the first time, I acknowledged to God that I had no control over my life, and I surrendered every aspect of it, especially my hemophilia, to Him. I asked the Lord to help me get through this. I told Him that even though I was still in that wheelchair, I was going to have complete trust, confidence, and faith that He was going to help me get out of it. And even if I didn't, I was going to try to look at life from a different perspective.

As I wept, I can remember feeling like I had a purpose. I can remember sitting there and things just started hitting me. I began with why I was feeling so depressed. I re-evaluated my life and just focused on what I was taking for granted. I asked myself what could I possibly be depressed about! I was in a wheelchair; yes, it was a limitation to my mobility. But I still had a heart that beats without my telling it to beat. I still had ears to hear conversations with my family and friends. I still had eyes that could see other people's smiles. I still had opportunities, challenges, and even fun activities to pursue in the future. I still had skin that was sensitive to touch.

Although the sun wasn't out that day, it was shinning brighter than ever on me. For the first time in quite some time I felt alive. I regained my confidence that this illness is just a part of me, and that I can have some control over it. Obviously, I may not be able to control when I am going to have a bleed or when my inhibitor is going to spike up, but I can control my attitude! Since that cool early summer day nearly four years ago, I did push myself out of the wheelchair and proved the doctors wrong. I would walk again! Not only would I walk again, but I would also walk tall and proud, with barely even a limp.

Now I've found my passion: improving the quality of life for children and young adults with hemophilia. Since my re-conversion that fateful June day, I have traveled all across the country on behalf of the National Hemophilia Foundation and met so many amazing individuals who continue to give me hope and inspiration every single day of my life. I've shared my story with other hemophiliacs in Arizona, Tennessee, New York, California, Utah, and Michigan, just to name a few states where I've been privileged to speak. No matter what God gives us, we CAN turn it around and make something positive. It's possible. I know it's possible because I've lived through it and continue to live a victorious joy-filled life, due to the perpetual help I receive from Almighty God. He watches over us each and every day of our lives.

By shifting my view 180 degrees, I'm now ready and willing to dive into each new day with an open mind and open arms to accept-and, yes, even embrace--whatever life has to give me. Through this experience I've also come to the conclusion that I'm very blessed to be where and who I am today. How fortunate I am to be living the life I have; to be blessed with loving parents who have sacrificed, and no doubt will continue to sacrifice, anything for me! What an awesome blessing it is to have amazing friends and family who care about me! How grateful I am to know that they will always be by my side to lend a helping hand and a shoulder to lean-and cry-on when I need it the most!

Yes, I had reached a place where suffering can be so intense that it seems unbearable. However, it was also a place that allowed me to discover the redemptive purpose of that suffering and to face it with the help of God, rather than run from it. Indeed, if in this place, we dare get really quiet and open our eyes, we may even see the signals and hear the Voice in this journey that lies beyond the earthly sufferings that we must all endure. That is the voice of Almighty God!

Once we join our crosses to His, we have the opportunity to become spiritually renewed and reborn, to find and embrace His truth and joy, and to deepen our hope and faith as Christians. Meaningful purpose will arise as we sweep away the residue of that which has become meaningless. This is a place where miracles can happen, even when all hope seems lost. For we know that the depth of the sufferings we endure in this life cannot compare with the intensity of the joys we can experience in eternity.

Through this experience I now understand that some days will be tougher than others. Each new day there will be unknown and challenging obstacles for all of us to face. It took a lot of weeks of lying in a hospital bed and sitting in a wheelchair for me to realize that I am going to try to take what I've been given, accept it, deal with it, live with it, and make the best out of it. Now I can truly say that life is, by far, the greatest gift of all.

by Richard Pezzillo
August 23, 2005

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