Tuesday, October 28, 2014

The fight continues

The alarm goes off I wake up and turn it off. I swing my legs off the side of the bed and try to stand up. I fall back onto the bed as my body said not just yet. I take a few minutes and try again. Success I have made it to my somewhat one good leg. I then take a deep breath and start to hop my way to the bathroom. After I was done I hopped back to the bedroom. I make my way to the bed and fall onto it. I laid there for about 10 minutes while I caught my breath as my body was worn out from my little 10 foot excursion. When I finally caught my breath it was time to get dressed. I get my underware and jogging pants (not that I will be jogging) on. I then go to put on my shirt. I put my arms in and as I put them up to pull down my shirt my shoulders get a sharp pain so I quickly shake the bottom of the shirt down and rest my arms. It is now 30 minutes later from when I woke up. Shoot I'm going to be late. I try to ignore the pain and start getting my socks and shoes on in a hurry. I then get into my wheelchair and make my way to my car ride. On the way I was looking forward to stoping at the Krispy Cream that's accross from my second home University of California Irivne Hosptial campus. This little piece of heaven I receive from the fresh hot warm donut and the taste of the ice coffee that washes it down is always my treat to myself for having to go to that dredful second home. As we exit I get more excited as the Krispy Cream is now getting closer. I then looked up at the digital clock on the radio and realize we only have 5 minutes to my appointment. Dang it no time to stop. I say don't worry about it I will get it after. As we pass I see the hot fresh donuts ready sign on. Ugh I was really hoping to get that right now. I get dropped off at the front of my specialist's office building. I wheel myself to the door in my wheelchair. As I get to the elevator my arms burn from the muscles it took to get me from there to the elevator. The doors open and I see the double doors with the sign that says "specialties". I push the button and roll myself in. I sign in and wait. As I look around the waiting room I see other people waiting in wheelchairs with their heads low looking lifeless. I then think to myself I wonder if I look like that. Before I could think more on this I hear my name being called. It's time, it's time to go hear either good news or bad. After a 3 hour visit I was ready to leave. The door opens and I hang my head as I'm wheeled out in my chair. The news wasn't good. The doctor said he feels I am delcling. He also said that besides my knees and hips he now feels I may have Avascular Necrosis in my shoulders as well. This news wasn't what I was expecting. As I finally make it out and back to the car I get in to head back home feeling defeated. As we leave we come up on that place that holds a little piece of heaven. Want me to stop asked Jennifer? I hung my head and said no let's just go home. My stomach felt empty but I had no urge to eat as inside I felt empty and defeated. We continued on and made it back to the house. I get out get into my chair and make it back to bed to lay down. A few hours go by and I receive a call from UCI. It was the Dr who is in charge of my drug trial I am on to help find a cure for Juvineil Dermatomyositis. She asks how I felt and I told her how I didn't feel well and what happened with my appointment with my specialist. She then says well that's the reason for my call. She says she hasn't spoke to my speiclaist yet but feels that with their testing they see a decline in me and is going to make an executive decision to end the drug trial. She said the reason they made the executive decision is because she knew I wouldn't pull myself off of it. She said "you have been an outstanding patient and such a fighter. I knew you wouldn't call it quits yourself. So I have decided to call it for you". I told her deep down I was thinking it but didn't want to fail all my JDM warriors so I didn't say anything and was just hoping it would turn around. My mother suggested it and so did my other loved ones plus others on my social media sites. So I told her that it saddened me to hear it but also felt a little relief I didn't have to tap out and that they threw in the towel for me so I didn't have to. I hung up and it all hits me. The empty pit in my stomach feels even emptier. My head hangs low and I now feel even more defeated. I'm now slumped in my chair lifeless like those I saw either in the waiting room. Depression kicks in and I fell like I have failed everyone. Deep down I know it wasn't my fault but I still felt as a disappointment. I really wanted this to be a cure so no other child ever had to deal with this disease. It felt like losing a fight that you trained harder then you ever have before and it ended with a loss. I keep all this bottled inside my head as I try to keep a positive look on my face for my daughter who just got home. We talk for a bit she told about her day and then went out to play with her friends. I hear a knock on the door and it's my friend Charles. He came over to just hang out. We hung out for a bit then decided to go over to my neighbors to check out their kitchen as my buddy Charles has a kitchen company and they loved what he did for mine. I rode my motorized wheelchair down the street and we were greated by my neighbor Julian who was outside. I introduced them and after we went to go check out the kitchen they want remolded. I started to wheel towards the doorway and realized after a few attempts that I wasn't going to be able to make it in the doorway because my chair wouldn't fit. I said don't worry I will hang out here for a fit and get fresh air. As I sit outside I'm by myself and I feel embarrassed and worthless because I couldn't make it inside because of this stupid chair I have to be in. Then the neighbors son came out and started to shoot his basketball. The ball ended up bouncing into my lap. I was about 4 feet a away and went for the shot. I pulled back the ball like I have done millions of times and went to release it. As I pushed forward to release the ball it felt like I was throwing a bag of bricks. I watch the ball leave my hands and watch it not even come close to the rim and fall to the ground. I couldn't believe that I couldn't even throw it high enough to hit the rim. I once again felt defeated by my own body. I sucked it up as I didn't want the little boy see me defeated. As I sat there and just watched him shoot I was fighting depression inside. Then I hear the front door of the house open and out runs their little girl Lilly. She screams "Bwant bwant !!" as runs towards me with a huge smile and a big pretty pink bow in her hair. She runs up and asks to me to help her get into my lap. I helped her up with my arms and tho it hurt really bad I didn't even think of the pain. She's then says let's go for a ride bwant. So we rode around for a bit and then I said ok you drive now. I taught her how the remote stick works and off we went. She was so happy to drive it around and all I could do was smile and laugh with her as we almost "cawashed" a few times. For those few 10 mintues I felt no pain or the emptiness in my stomach. Her smile and laughter made it all go away. It finally felt like myself again even though it was only for few minutes. It's amazing what a child's smile and laughter can do. Then we hear the front door open and little Lilly says "Daddy look I can dwive!". My friend Charles and Julian walk out to the street to join the kids and I. Charles started to shoot the basketball with the boy as I "cwashed" around with little Lilly. Julian speaks to his son and asks him what sport he wanted to play this year. He said I want to play football dad. I said that's awesome I loved playing football. So Julian pulled out a football. I ask his son Luke what position did he want to play but he didn't know. So being that Charles and I both played football we said well let's find out. Charles had him start playing catch to see if he could throw. Then we had him start running routes to see of he could run and catch. I didn't try to throw the ball as I didn't want to see what happened if I did. However just sitting there with Lilly on my lap cheering on her brother and Charles and I giving instructions to Luke how to catch and throw correctly was another time I forgot all about what a crappy day I was having. After a few more plays we ended up saying good bye to the kids and headed back to my house. When we arrived we hung out and watched Monday night football. I ended up falling in and out of sleep at the end of the game. I then hear the chair move and I look up and it's Chalres saying good bye. After he leaves I make it to bed and I was so tired I just plopped into bed with all my clothes on. As I fell back to sleep my mind was at ease. I knew when I woke I would have to face the issues ahead but for now I was done fighting. I am ready to rest for the war ahead as tomorrow the fight continues. 

Thursday, October 23, 2014

My battle with Juvenile Dermatomyositis

When I was 10yrs old I started to get an itchy rash around my waist line. We didn't think much of it and just put cortisone cream on it. Well a few weeks later I was in Bufflo NY with my parents for dog shows. We were walking downtown and all of a sudden my ankles and knees hurt so bad and I felt very weak and fatigued. When we returned home we went to the doctors. They doctors thought that I had lymes disease.  They started to treat me as so but it was not working and I was getting worse. Then my body started to get red purlplish color on my face, my neck, and all over my joints and hands. Then thought perhaps I had lupus but tests came back negative. With pulling all resources I ended flying to Chicago to meet a specialist named Dr Pachman. The first day I meet her and took all the tests she diagnosed me with a disease called Juvineil Dermatomyositis. When we returned back home we went to a hospital in Pennsylvania. The Dr there worked with Dr Pacham and they came up with a new treatment idea and that it had to be signed off on by my parents. The Dr told my parents that I may never walk again. My father took that doctor outside the room and roughed him up and said don't you ever tell my son that again. I kept on the new treatment in the hospital but it was still getting bad and it got to the point I couldn't even lift a fork to feed myself. When I was able to finally go home things were not any easier. Everyday I had to have a nurse come and give me my IV. I also had to do physical therapy what was the most pain ever. I was actually using cans of soup as weights to help build my arms. It was really hard and I always was upset with my parents making me do it because it hurt so bad. My friend Desmond Spady took off most of his summer to keep me company and got me to start learning to catch a football again. I will never forget what he had done for me. Then a year later I went back to school. When I arrived kids were really scared of me. The reason is because I was really fat from the side effects of Predinsone. I remember hitting the play ground and the ball was thrown to me and not one single person would try to tackle me. So next play I asked for the ball and as I ran one of the students just stopped in front and did nothing. So I slapped him in the head with the ball and said tackle me pussy! He laughed and ended up knocking me to the ground. Everyone ran over to check on me and I got up and laughed and said about time you guys start treating me normal. That same year I enrolled back into football and my second game back my best friend in the huddle said we are not running coaches play this one is for Brandt. So he called a flea flicker play and told me to just run as fast as I could and the ball was coming to me. The quarterback pitched the ball to Desmond and I ran as hard as I could. Desmond through the ball to me and I caught it and broke two tackles and ran 75yrs for a touchdown. All my teammates and coaches cleared the bench and came to celebrate with me. That was the first time since I was diagnosed that I truly felt like I was beating this disease. A week later my mother and I went to see the Dr that said I would never walk again. My mother made him come into the waiting room where there was a VCR. She popped in my game tape of my touchdown and made him watch it. She then said this is why you never tell someone they won't walk again. I loved it but I feel my mother loved shoving it in his face even more then I did. After all the confidence I received from this it drove me to get out and work harder then ever on preparing for the next football season. The following year I ended play footbal and joined the wrestling team. The wrestling was really tough on me but I ended up getting the starting spot on my team. I entered a wrestling tournament that year and placed 3rd. My last match I broke my finger and my father said come here now. He took me behind the stands and said you know pain so now just deal with it and broke it back for me. He grabbed some tape and taped them together and said now go get that win. That is actually what I did. I got back on the mat and remember what he said. I know pain so just deal with and use it. I ended pinning my opponent and when they raised my hand the tape was coming off and my finger was dangling. The coach screamed at my dad saying you told me it was ok. My dad said yes it is ok. Ok for my son but probably not for others. This is when I learned pain can make you stronger. The more you endure in your life the more you learn to deal with it and use it for power. After that amazing year I even had even greater thing happen to me. I was told by my doctor I had gone into remission. My life was back to being normal and I could do the things I loved. I spent 5yrs feeling great and playing sports until one day that dredful rash started to come back and I was feeling weak again. Sure enough my disease had came back. I went into depression when I heard it. I was now in high school and the last thing I wanted was to be in high school looking fat with rashes all over me. Luckliy we attacked fast and hard enough that I only needed a few treatments and I was back into that great word remission. Then when I turned 16 I ended up having another attack and this time I had to stay in the hospital for awhile. Luckliy it was in the summer so I was out of school and didn't have to explain anything to anyone. It was only a one month stay and I was back to remission once again. Then when I hit 23 I was once again under attack. This time was hard because it was attacking my heart and all my muscles were just eating away. This time it was about a 6 month stay in the hospital. As I always did I ended up beating it back into remission. I took up mixed martial arts after I was back to normal and was winning medals like they were giving them alway. I took mixed marital arts as my new passion. I ended up training and managing some of the biggest names in the sport. Then at the age of 33 I was once again hit with an attack. This time has been one of the hardest attacks yet. It has hit my lungs to where they were starting to collapse. Then I was told I have rheumatoid arthritis, blood clots in my lungs, and avascular nercosis and plus testicular cancer. The bone marrow in my hips and knees were not getting enough blood into bone so they started to die and collaps. This is when I was once again told I may never play sports again. This time it may be true but like my father would say you will you just have to want it enough. So I am now battling all this to make the comeback like I always have done before. 

Wednesday, October 22, 2014

What is a true friend?

What is a true friend?

A true friend will be there when nobody else is.

A true friend won't believe rumors and will get to the bottom of them before making judgment. 

A true friend won't have any problem donating their own time to help you.

A true friend will listen to your problems without speaking about their own. 

A true friend will call just to ask how your day was. 

A true friend won't get upset when you give them advice and they don't agree with it.

A true friend will always have their front door open to you and never ask you to leave out the back. 

A true friend will celebrate all your accomplishments and be there to pick you up when you fail. 

A true friend will never put money before friendship.

A true friend will take a loss for your gain.

A true friend will rub you on the back and say it will be ok even when it's not. 

A true friend will walk hundreds of miles in your shoes just to understand you more. 

A true friend is not a friend they are family. 

Friday, October 10, 2014


You hear everyday how someone has been inspired by someone or something. Throughout the majority of my life I have always been told I inspire people. This is because of all the obstacles I have had to overcome in my life. These obstacles started at an early age. I was raised by an extremely abusive father. I am not just talking about spankings. I am talking about abuse you see in movies and read about. It was physical and mental abuse that my brothers and I received. Then at the age of 10 I was diagnosed with an auto-immune disease called Dermatomyositis. This disease attacks my muscles and joints to the point I could not pick up a fork to feed myself. At that time I was told I was only the 52nd person in the world diagnosed with this disease. I was also told I would never walk again or be normal. Well I ended up proving the doctors wrong and made a huge comeback. A year later after being told that I would never walk again. I ended up going back to playing football and made a 75 yard touchdown my 2nd game back. I fell to my knees in the end zone and my teammates and coaches all cleared the bench and celebrated with me. It was a great moment in my life I will always remember. Then a few years later my mother decided she was going to leave my father. This ended up with my father taking his own life. I was now left without a father figure in my life. This was not the only thing his passing brought. His passing left my mother and I broke. We had to move around place to place state to state for my mothers work. She ended up having to work two jobs just to support us. Not only was money tight but our family was broken as well. My fathers death was so hard on the family that it split a lot of us up even some for good. So here I am battling the loss of my father. Seeing my family fall apart and my mother struggling to keep us afloat. This is when I decided I no longer cared about life. I ended up getting involved with the wrong people. I made stupid mistakes and I didn't care about the repercussions. All this time I was also battling my health issues. After a few close calls I realized I needed to try to fix my life for the better. I ended up moving to an island called Nantucket where my oldest brother was living. He had a business and told me to come out and work and learn with him. This was a huge moment in my life. I finally felt like I had a father figure in my life. However I didn't really know how to accept it. I never really had a father figure so how could I learn from one? Well because I was still trying to figure this out I ended up ruining it. I wanted someone to show me how to be a man. However I didn't want to be told how to be one. It was hard for me to take advice from him because I was always so independent. This ended up me pushing my brother away. So then I was back to what I had always known, being alone. I did what I could to keep a roof over my head. I ended up meeting a girl and got her pregnant. I was only 20 years old at the time. I was scared but excited at the time same. I ended marrying this girl because it was the "right" thing to do. I pushed as hard as I could to support my new family. Sadly the mother of my child was not truly ready to be a mother. We ended up getting a divorce and had a nasty custody battle. When things finally got worked out in court I was now back to being alone but this time with a baby. Everyone expected me to fail as a father. Rightfully so as I never really had a father so how would I know how to be one. Well I proved many wrong. One thing nobody can ever say about me is that I am not a good father. All the pain and loss I had dealt with helped fuel me to be something I always wanted, a great father figure. My daughter is now 13 and is growing into being an amazing woman. She is my greatest accomplishment. I have worked in the world of music and made a big name for myself. I created and ran huge companies. I have worked as a producer for a tv show. I became a name in the world of mixed martial arts. I have done a lot in my life but nothing compairs to being a good father. Now why am I listing all my accomplishments? Well because with all those things I have achieved I can not list one thing or person who inspired me to do all this. What is weird is that through all my accomplishments I was always told I was an inspiration. I helped others reach their goals and always gave advice on how they can overcome their own life's obsticles. What is weird is that I had become this inspiration to so many when I had never had an inspiration in my own life. So how is it that I can inspire people when I don't even know what or who inspires me? I guess not having something makes you more familiar with it then just having it. When you don't have something but want it you strive to learn more about it. I guess through my life experiences I have learned what inspires people but I haven't learned what or who inspires me.  

Wednesday, October 8, 2014

Why to live?

We don't ask to be born, so why do we have to choose to live? I have recently have had many thoughts on this subject. The beginning of this year (2014) has been one of my hardest years of life as of yet. It compairs to the time my father decided to take his own life when I was just a young teenager. My father had a very hard time with all he had been through in life. My grandmother once told me the last time she saw her son was the day he left for the Vietnam war. When he came back from war she said he was not the same man she have birth to. Between the war and making poor decesions on how to take care of his family. He ended up turning the only thing he lived for upside down. My brothers and mother decided they had enough. They disassociated themselves from him and this ended up leaving him feeling like he had nothing left to live for. So he decided to take his own life. For many years I was very upset with him because I felt he was very selfish for leaving us. His death broke up our family for good and it has never been the same since. I resented him for this for a long time. I then realized years later that maybe it was selfish of me being mad at him for wanting to end his pain. See many people look at suicide as a cowards way out. I don't believe this to be true. One thing my father never was, was a coward. He was a very large man who didn't take crap from anyone and always came at a problem head on. He was one of the most feared men I have ever known. When people saw Bob Stebbins mad they would get as far away as they could from him. He was that intimating to many many people. Anyone who knew him would never say he was a coward or soft. However those who didn't know him and heard that he committed suicide would say he was a coward for doing so. These same people could not be any more wrong. Just because someone decides they had enough doesn't mean they are weak. It means that their breaking point has been met. It actually takes a lot a courage for someone to take their own life. Many people have said they tried to take their own life but failed.  As my father once said "We try to not die everyday. So if you want to take your own life it shouldn't be hard. It's easy to end your life you just have to have the balls to do it". He was right, it is easy to take your own life. You just have to have the balls to actually do it. So to call one a coward for suicide doesn't make sense to me. Now that we have come to terms that it truly isn't the cowardly way out then what is it? I feel it's the way one can end the pain and suffering once and for all. If you were sick and always in pain and they had a pill to make the pain go away for good I am sure you would take that pill. Well that's what my father did. He took enough pills to end his pain forever. It was not his choice to be brought into this world. It was not his choice to live the life he was given. He was born and given the life he got. How is it fair to blame him for not wanting live this life he never asked for? This is a question I ask myself a lot. Yes we do have choices in life but those choices are not our own to choose from. So if we don't ask to be born. We don't ask for the choices we are given. Then what choices in life do we really have? Well we can choose to live a life we hate. We can choose to try to live a different life but that doesn't mean we will. We can choose to live or not to. As my father once said you choose to live everyday by not trying to die. So if we can choose to not die then why can't we choose to not live? Nobody in this world asked to be born and given life. If life is all about choices then the choice to live or not should be just that, our choice. However society has made it out that it shouldn't be our choice. Just look back at Dr Kevorkian. He helped terminally ill people who were living horribly the choice to end their pain and suffering. I for one always supported him for helping people leave the pain and suffering behind for good. What is life worth living if you're not happy living it? Well the only thing I can think of is family and loved ones. This still brings a tough question. Is it fair to the one suffering to continue to suffer for the sake of loved ones being sad they are gone? I personally feel that it's selfish for those loved ones to make the person suffering suffer longer because of their own feelings. Did my father's suicide bring pain to our family? Yes, however we all still are able to live our lives without him here. So why make someone feel bad about wanting leave the world they are suffering in? For your own sake of just wanting that person in your life? I consider that more selfish then anything.  

I recently made a post on Facebook that I wish that the lord would either fix me or take me. I just want this suffering to end for good. Many people commented on this post and said I can't leave this world. That to many people look up to me and need me for insperation. Now it makes me feel good I inspire so many. However does inspiring these people (some I have never met) worth my suffering? I didn't ask to be an insperation to so many. I didn't ask to be a poster child for the diseases I am battling. I was given that title and was told that I will be the face of these issues even if I didn't ask to be. How is that fair to me? How is it that just because I have a disease that others have makes ME the poster child? Why does it mean that I have to continue to live suffering just to make other people feel better about their own situation? I am told that I have to continue to fight because others look up to me. How is that fair? Why should I have to carry the burden of the pain and suffering just to make others feel better about their own situation? I am not Jesus Christ, I don't believe I was put in this world to suffer for mankind. Why should I feel guilty about leaving this world for the sake of others who I don't even know personally. The truth is that I know all these same people would live on with me dead or not. So why try to make me feel guilty about these thoughts of wanting to end it all? The only people I should feel guilty hurting are my loved ones. However go back to the beginning of this post. Should I truly feel guilty of wanting to end my suffering because it may make life harder on those I love? That's the hardest question because I don't want to hurt those I love. I do however want to stop the hurting of myself. So what is the correct answer? Society will say suicide is not the correct answer. I personally disagree to a point because I know my father will never suffer again and I have lived on without him. I also learned to accept that, that's what he needed to end his pain. I love him so much that I rather him be gone then to continue to suffer the way he did. With this thought process I struggle with these questions.