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<\/p>\nWell, I’ve been putting this off long enough! \u00a0To be honest, writing this part of the story is not something I feel very excited about. \u00a0There are a few reasons for this. \u00a0One, it’s not funny (well maybe a little funny). \u00a0Two, it brings back some painful memories. \u00a0Three, it doesn’t paint me in the best light. Four, it brings up some hard to answer spiritual and emotional topics that are hard to deal with. \u00a0Five, I cry like a baby in it. Six………………Well, I could keep going, but I think you get the point.<\/p>\n
You might ask “Well, why are you sharing it then?” \u00a0 I would respond \u00a0“Because it is part of the story and as painful as it was, there are millions of people out there that have gone through something this painful and millions more that someday will. \u00a0I’m not sure if my story has any answers or cures to life’s woes but I know there is a certain consolation in sharing these stories with each other and knowing you are not alone. \u00a0Sometimes just knowing that someone else has been through something similar to your situation is enough to give you the courage to keep fighting.” \u00a0That’s why I’m sharing it.<\/p>\n
Up until this point in my story I have been pretty strong in my opinion. \u00a0I had held it together and gotten through these difficult life challenges with my head held high and somewhat still optimistic. After the first set of ordeals (brain tumor, meningitis and cancer), \u00a0my life was better in quite a few ways. \u00a0I felt grateful to be alive, \u00a0I was optimistic about the future and I thought the worst was behind me. \u00a0I met my wife and we even worked together in a Christian ministry for 2 1\/2 years as I trained to be a minister. \u00a0Life was good and I could see a reason for the difficult things that I had gone through to get where I was. \u00a0When you can understand the reason and see a good outcome to a hardship it makes it so much easier to accept and surrender to. \u00a0You would think, that as I sat in my hospital room that night, I would be able to reflect on these thoughts and be resigned to what the future might hold. \u00a0 I was not.<\/p>\n
I left you in Part 11 on a Saturday night. \u00a0My family and friends that came to see me had all left and I laid in my bed very afraid of what would happen to me next. \u00a0I remember praying diligently that I would be strong enough to deal with the road ahead.\u00a0 I honestly did not sleep one wink that night. \u00a0My skin hurt all over like a really bad sunburn and I was starting to itch all over. That, coupled with the fact that the hospital ward I was in seemed insanely loud and chaotic. \u00a0I don’t know if it was the burn unit or what, but I remember constant crying, screaming, yelling and alarms going off all night long.<\/p>\n
The next day more friends and family came to see me. \u00a0Most people acted pretty discreet but one very Italian friend of mine came in the room and exclaimed “Good God, Steve! What the heck happened to you?” \u00a0In a thick Italian accent. (Imagine an episode of the “Sopranos”) \u00a0During the visit he kept shaking his head back and forth and staring at me. \u00a0By this point, my skin was beat red (or is it beet red?) and was starting to all peel off. \u00a0I had flakes of skin all over my face, neck and chest peeling off. \u00a0I made it through that Sunday and was so tired I was looking forward to forward to falling asleep that night.<\/p>\n
Sunday night was the same as Saturday. \u00a0More screaming, yelling, crying and swear words flying around the halls. \u00a0I didn’t sleep a wink. \u00a0I even asked for something to help me sleep which they gave me and I still didn’t sleep a wink.<\/p>\n
Monday I was even more exhausted! \u00a0More friends came to see me but I remember feeling like I didn’t have any energy to talk. \u00a0That was one of the few days where I had friends there and I just turned over and went to sleep. \u00a0Usually, I would feel like I had to talk to them but that day, I just didn’t have the energy. \u00a0I was so tired!<\/p>\n
Along with my friends, were the visits from the doctors and medical interns. \u00a0One doctor would come in with 5-6 medical students trailing on his coat tails. \u00a0The doctor teach them all about my Toxic Epidermal Necrolysis like I wasn’t even sitting there and then the students would ask me all the questions they could think of. Usually, they would ask me a bunch of questions about my history. \u00a0They usually stared at me like I was a medical student’s dream patient because of my exciting and varied medical history.\u00a0 \u00a0I made it through Monday and was hoping I would sleep that night. \u00a0You guessed it, I didn’t.\u00a0 Not a wink.<\/p>\n
By Tuesday, \u00a0there were little black dots appearing all over my skin. \u00a0The doctor and crew of interns and medical students came in to see me on their tour of patients. “These black spots appearing all over his body are a sign of the the lower layer of the skin separating from the body before it would start to slough off” he taught his eager students while holding up my arm for them all to see. \u00a0I’m telling you this as I remember it, so if I’m mistaken about the exact medical terminology I apologize.<\/p>\n
I was extremely tired by this point. \u00a0More tired than I had ever felt in my life. \u00a0Until this point, I had been on an IV for four days because they were pumping fluids into me to keep me hydrated. \u00a0I’d been sitting in my bed for quite some time and at one point decided that I needed to go to the bathroom. \u00a0I slowly tried to get out of bed and as my feet hit the floor and I tried to stand up something felt very wrong. The middle section of my body felt very heavy and I had trouble keeping my balance. \u00a0I moved my hospital gown aside and looked down into my briefs and almost passed out. \u00a0I didn’t recognize what was between my legs!\u00a0 It was this gigantic swollen mass of “something?”. \u00a0I don’t know what the Elephant man’s private parts looked like (nor do I care to know) but if I had to imagine, this is what they would look like. \u00a0Let’s just say, I freaked out! \u00a0Maybe it was the lack of sleep but I felt like I was on the brink of insanity by this point.<\/p>\n
My wife walked in a few minutes later and I frantically told her I had to show her something. \u00a0As I moved aside my hospital gown and pulled down my briefs I’m sure she was thinking “Steve, really? We’re in a hospital room and your skin is falling off! \u00a0This isn’t the time!” \u00a0Once she saw what I was frantic about, she did what any caring and loving wife would do……….She burst out laughing!!\u00a0 She must have laughed for a good couple of minutes. \u00a0I kept telling her it wasn’t funny but she was laughing so hard I don’t think I was getting through.<\/p>\n
I called a nurse and told her I needed to see a doctor immediately. \u00a0A few minutes later a doctor came in and I showed him the object of my concern and he said “I can see why you are concerned. I would be too!” (he was considerate enough to not burst out laughing like my wife had) \u00a0I felt like I was in a Saturday Night Live skit or something.<\/p>\n
The doctor explained to me that the IV fluids seemed to be draining down to the lowest part of my body and gathering there. \u00a0As I was sitting in bed, that lowest part was my groin area. \u00a0It was not an emergency. They would take me off the IV and the area would return to normal. \u00a0I was much relieved about that.<\/p>\n
That day, I had another talk with my doctor and was feeling quite agitated. \u00a0I hadn’t slept in 3 days and I had this strong feeling that things were slipping away from me. \u00a0I asked him where this was all going and what I should be expecting. \u00a0He told me that they didn’t know and that I just had to wait and see. This could be one of those cases that is the worst case scenario or it could just turn around at a certain point. \u00a0As I was thinking about my batting average so far, I was not very optimistic!<\/p>\n
<\/p>\n
Now, if you were to ever meet me and ask me “Steve, what was the lowest point in your life?”, \u00a0I would immediately answer that it was that Tuesday night in the hospital. \u00a0I wouldn’t even have to think about it. \u00a0That was it.\u00a0 \u00a0That night I decided that I wanted to try to take a shower. \u00a0I hadn’t had one in 4-5 days and I needed one. \u00a0I was exhausted, but I felt that it would be good to get out of bed and focus on a task. I walked down the hall and into this little side room to take a shower. \u00a0I turned on the hot water got undressed and went in.<\/p>\n
I’m not sure what happened in that shower, \u00a0something came unhinged in my mind or the emotional floodgates let loose. \u00a0I just stood there with the hot water spraying on me and thought about my life,\u00a0 all that I had gone through and what I was going through now. \u00a0I thought about my wife, \u00a0my one year old daughter and my second daughter about to be born in a month. \u00a0As I was thinking about these things, I felt this heavy weight of despair come over me like nothing I had ever felt. \u00a0I mean it was heavy. \u00a0I just had this strong sense that I was going to die. \u00a0Not only did I feel like I was going to die,\u00a0 but I felt that God hated me and wanted me to die!<\/p>\n
I know those of you that are church goers or have a belief in God will feel shocked by those words but that is how I felt at that moment. To be honest with you, \u00a0it was more than a feeling to me. \u00a0I knew these things! \u00a0I knew it as certain as anything in my life. I stood in that shower convinced that I was going to die very soon and that God was out to get me and make my last days on earth a living hell!<\/p>\n
I starting sobbing. \u00a0I mean I lost it!\u00a0 I have never cried so hard in my life! I fell to the floor and just sobbed uncontrollably who knows how long. \u00a0It didn’t stop. \u00a0I tried to get myself together and walk back to my room but I just kept crying. \u00a0All the way down the hall.<\/p>\n
When I got back to my room, I called my wife. \u00a0 I was crying and sobbing and rocking back and forth. \u00a0I was trying to tell her that I was going to die and that I was cursed. I kept telling her I loved her and my daughters. \u00a0She kept trying to talk to me and help me be rational but I was gone. \u00a0I don’t think I was really listening to her as she told me that things would be OK and God loved me. \u00a0I was convinced otherwise.\u00a0 At the end of the conversation, I asked if she could call an elder in my church and have him come talk to me ASAP. I felt like I needed to talk about this stuff before I died.<\/p>\n