At the age of 13, myself and my siblings came down with an intestinal virus. There are 7 children in my family at this time. When mom took us to the Dr., he ran a few tests on the bunch of us. Out of the 7 of us, there was a problem detected with one of us. Me. There was a hematuria of the intetines found. Blood in the feces. Gross I know, but just an explaination. So, I was sent for a few more tests. I had a barium enema done, then I had a scope done. To my family's surprise, they found polyps. There were several.

From there, I had some work done, some scraping, some burning out, and I can't remember what else. The rest of my siblings had to be tested. They hated it, and I felt like they hated me at that time. Over the course of the next few years, those procedures were repeated. They finally did a procedure at the Dr. office one day, scraped one out and sent it off to be tested. It was not malignant. Thank God. I didn't know what that meant, at my age, but my family was very relieved.

At one of my quarterly check ups, Dr. Donaho ran a scope at his office, and within a few days, I was admitted to the hospital. There were numerous polyps, and they had grown to a large type of mass.  I was 17 at the time. Nothing was really explained to me. I remember that EVERYONE in my family was there. I think my dad came in once before they did surgery. I can't remember. But what I do remember, was my stepdad's face when I woke up, while being wheeled out of recovery.

I was pretty much in and out of it for the next few days. I don't remember too much. But when I WAS fully awake one day, I got a good look at what kind of shape I was in. I had 2  I.V.'s coming out of me. One in my arm, and one in my right, inside, ankle. I think the lower one had been for my blood transfusions. Then there was this tube coming out of my stomach, a tube coming from out of my bottom area, at that time I wasn't sure from where. And then there was this plastic bag attached to my side with what looked like red bloody flesh inside of it. It scared me to death. Doc came in once he knew I was awake and aware. I started asking him questions, like what was this tube for, what was that one for. He explained each one to me letting me know that they were just temporary drainage things.. And then the big question, what was that bag, and how long would it be on there. He looked at me for a second, and stated "honey it will be on there forever", and then turned around and walked out the door. I was in shock.

I'm a nosy person by nature when it comes to my being. I was in loads of pain at this time. They were doing scary and strange things with the tube in my bottom. Again, sorry this is so gross, but I want to get my point out there. They would take a syringe and flush liquid into that tube, and I thought I was going to die. Once it was explained that the Dr. had had to remove my rectum, I understood more. They had to flush saline into that place to keep it sterile until it began to grow shut as it was supposed to.

One day, a big bunch of nursing students came into my room. No one asked ME if it was ok. And in that bunch were at least 3 of my close friends from school and growing up. I was so embarrassed when they began the flush of my rectum. I thought I was going to die. And it was sooo painful. I knew that they were putting entirely too much in the syringe at that time. I had had this done so many times by now. It was growing shut like it was supposed to, but this retarded nurse was trying to force the original amount of saline in that smaller space. I could feel the ripping and tearing. I was crying so hard. And I remember Patty yelling at the nurse and walking towards her and grabbing her arm, telling her "can't you see that you are hurting her". She, Penny, and Evelyn were crying with me. Along with the physical pain right then, I was suffering emotionl pain also. Enormous embarrassment too.

It wasn't long after that that I literally lost my will to live.

I stopped eating. I didn't want any one in my room. I didn't want to see my family, no one. My boyfriend had come in once. I knew that it was more than he could handle, and that it would be the last time I saw him. And I was right. I remember my dad being there one day, and telling me I should just be glad it wasn't cancer. I didn't even have any idea that it could have been. No one told me anything. I was scared and so confused. And I just gave up. My favorite memory is of my grandma Sidwell sitting with me. She didn't talk much, she just sat there and crocheted. And once in awhile she would tell me how much she loved me. At one point, I remember feeling like I was floating above the room. I could see myself lying in the hospital bed, and I could see her. And I remember my mom coming in and trying to talk to me, and my grandma coming to my bed and they were both crying.

That is when I decided to try.

I tried to eat. I tried to get up after I got my energy back. I began to learn as much as I could about my condition. I learned that it was a hereditary disease. But no one else had it. I got so angry, and sometimes still do. WHY ME? I felt sorry for myself, but once I got angry, I fought. I fought to exist with every bit of my being. I learned how to empty that disgusting thing. It stunk so bad, I nearly vomited each time. I learned how to clean it out, how to change it. How to take care of my skin. What I could and could not eat. Which changed over the days and years. My lovely grandmother was there nearly every day for awhile. I remember catching her beautiful smile once or twice when I would bound over each hurdle I faced.

One day a bunch of my old friends came in. Long time family friends. And in that bunch was a boy I had had a crush on since as far back as I could remember. Paul. And then this big secret plan began between some of my family and friends. It was nearly prom time. I had been so upset at one time that my boyfriend left me and I was going to miss the Junior prom. I'm sure I talked to my grandma about it at one time. And one day, that beautiful woman walked in with my mom, and she had this big long bag with her. Mom sat on the edge of my bed, and grandma stood up and unzipped that bag. And the contents left me a little confused. It was 3 different beautiful dresses. Prom dresses from Penny's outlet. I asked them who in the world those were for. Grandma grinned this big huge grin and said "they're for you". She said, "If you like, and the Dr. says ok, Paul would like to take you to the prom". Again, I was in shock. I got so excited I think my heart monitor alarm went off. I was crying so hard. But I was a bit apprehensive. I thought- no way will the Dr. let me out of here in time to go to no prom. It was a week off, and I had trouble even standing up. Grandma told me to pick my favorite one. And a nurse came in and helped me to try them on. I picked the really pretty cream colored one with spaghetti straps and a little jacket. I'll post a picture of it soon as I can find it. LOL

The next day, during rounds, I asked Doc about going. My mom and grandma talked to him, then the three of them went out into the hall way. He walked back in the room, and he said "on one condition, you start eating better, and you take long walks every day to get stronger, and I'll think about it". Talk about determination ! I was going to make this happen. No one could stop me at that point. I was in so much pain, but I knew I had to do it. No way was I going to miss going to the Junior Prom with Paul. Over the next week, I walked further and further around that hospital floor. Mom would come in with Paul's mom, and they would discuss the plans, talk about what kind of tux Paul was getting, and they had me pick out flowers for the corsage (?spellcheck). THEY KNEW WHAT THEY WERE DOING ALL ALONG. And I was clueless. LOL

The day before the prom, Doc walks in. He tells me how proud of me he is. But I see doubt in his eyes, and my heart is melting. But then he puts on this big grin and tells me I'm going home for 3 days, and that I was to return to the hospital for a check up. Man was I excited. We gathered up my things and sat there waiting for my release. And then I was free. But once I stepped out of that hospital air, I got scared again. Everything seemed so unreal. I had breathed that hospital air for almost 4 weeks and hadn't been outside. Everything seemed so huge to me. But by the time I got home, I had calmed down. I remember wanting to lay out in the sun, soak it up, get rid of this whiteness that had become my flesh. Got a little burnt. In about 3 hours time, I was exhausted. My brothers and sisters had made a big deal about my welcome home. I felt so loved. They all had so many questions. Some of them not old enough to understand what was even going on. Panic again set in when I realized I had no nurses to help me out with this new life I had to settle into.

My mom had to insert that tube into my slowly healing rectum and flush it out every 6 hrs. or so. I knew it was hard for her. I made it to the prom. I will never forget that time in my life. Paul did a kind and gallant thing. We never dated or anything after that. Within another week or so I was back in school. The first week I stayed on one floor in like a study hall. And later there were times I wished I could have just finished school out that way. Gas, my worst enemy. My stomach would gurgle and growl very loudly. It was so embarrassing in the classroom. I was always paranoid too. That bag would leak around the seal, and the smell was awful. So was the burn of my skin when the contents would seep out onto it.  At home, it had gotten bad. Several times the bag would leak in the middle of the night, from getting too full while I was sleeping, and would cover the bed. It was tough on the siblings I had to share a bed with. Like I said, I had a big family. We lived in a small home, and with 4 girls we would have to sleep 2 to a bed. It didn't take long for me to have my own bed. And my sleepless nights began also. I was so worried about leaks I couldn't sleep well, always getting up and going to the bathroom to empty it. 

I made it through high school. And back when I had begun my college prep courses and the Upward Bound Project, I knew I wanted to go to college.  With the big family, and the money being so tight, I had decided I would enlist in the army. I knew that I could make it through it, and it would also help me pay for my college. I was so naive. I went through the enlistment process. And a recruiter came to meet me. Everything went so well until it came to my medical condition. I didn't understand what the big deal was. I was physically fit and prepared, but they didn't feel that I would be able to do the field exercises (eg:roll on the ground) with a bag on my side.  I was completely heart broken. My entire mental composure began to change. It felt like everywhere I went I was told to just get on S.S.I. because I would never be able to lead a normal life. BOY DID THAT MAKE A LOUD STATEMENT AND CHANGE THE REST OF MY LIFE !

From there on out, I was set on proving everybody wrong. I would have a normal life. No matter what. (Or so I thought)  I began a job search and gave up the idea of going to college. Another thing that changed my life. I got a job at a local factory. A great place ! I made lots of new friends, worked extremely hard. I had to prove that I was NORMAL. I worked on an assembley line. I made friends with my line supervisor, told her about my situation, that if I had to go, I had to go. I did double the work to make up for the time I spent in the bathroom. And that all worked great for almost 2 years. Then we got put on another shift. Along with that came a new shift supervisor. He was a cocky sun of a gun. One night, he had been scoping the situation on the lines and eyeing me. It made me quite nervous. He had approached me at one point and told me what a good job I was doing. At one point though, I had had to go to the bathroom twice in about 1/2 hr. Sometimes the things you eat do that. On my second round, before I could leave, the shift sup. approached the line sup. as she took my place and asked where I was going.  He wouldn't allow me to leave the line a second time. The tears welled up in my eyes. I got sick to my stomach. That bag was huge and bulging out like I looked pregnant on one side. That's what it does when it gets full. I had on jeans, and it didn't take long for it to burst. All over me. Onto the floor. It ran down my legs. It smelled horrible. I just stopped. Everyone looked at me. The line sup. shut down the line. Another great embarrassment in my life. I was in a stupor. Terri came to me and just hugged me, mess and all. In a second the shift sup. came in. He didn't know what to think. I remember shouting obsenities at him, along with everyone else on the line that night.  I was sharing a ride with a neighbor at that time, so I had to call my mom, late at night, with no one to watch the rest of the kids, to leave and come get me. I remember she was kind of angry. But she got me home. I got cleaned up and could not get to sleep. I had a very hard time going to work the next day. I had called my union sup. and explained what had happened. We had a meeting with my shift sup. and my line sup. before I got started on the line. Facing those ppl was very hard. I had never let that happen in that time working there. I was very careful and responsible. And I made sure the union sup. knew that. I know that my shift sup. wasn't around for awhile after that. But neither was I. I was moved to another dept. Then to another. I was moved all around, doing single jig work, inspection work, anything I could do alone and without great supervision. I worked well that way. Then I received notice that I had won a position I had put in for in the molding dept.  It was great. I could do my work at my own pace. I could go to the bathroom whenever I wanted. I got good at that job.

By this time I had a good car, and a nice apartment. I had just moved in. Then I sustained a bad injury to my knee. It dislocated for the second time. The first time it happened, I was babysitting my sisters two babies. We were playing, I was swinging one of them around, and it just twisted a little and I fell to the ground in great pain. That's another story. I remember getting to the hospital and back home, thanks to the guy I was dating at the time. But, I never saw him again either. Big surprise. I was put to bed on my couch upon returning. And heavily medicated because they couldn't put my kneecap back into place as they had been able to do the first time. This time they had to put a brace on it and I had to tighten it on a schedule, and let it go back into place slowly, what they called "naturally".  Well that night I couldn't move. I had no phone yet. And by morning time, you guessed it, my bag had burst and it was everywhere. I layed like that for several hours. I had screamed, cried until I was dry, and completely broke down. My landlord lived in the rooms adjacent to me. He was a school teacher. Upon his return from school that day, I took everything I had and screamed with all my might. He got into my part of the apartment. I will forever be indebted to him for that day.

I lost my job over that. Something I wish I had fought. But I didn't. I began to give up again after that. I skipped from job to job. Boyfriend to boyfriend. Each not wanting to deal with my disability. I lost my apartment. I became a fixture at the local bars. At one time I developed an abcess in the area of the removed rectum. That was painful. I first developed a high fever and then great tenderness in that area. I was staying with my parents at that time, thank goodness. I got a 3 day hospital stay out of that. Doc had to go in there and lance the abcess and put me on high doses of antibiotics. No biggie. I survived.  I had gotten use to my bar days at that time and decided to move in and rent from a friend I had made. She and her husband were into the bar scene as I was. I was working at a local resturaunt as a cook. Things weren't too bad. I met a nice guy. A fellow bar friend. We fell in love. I fell in love with his family. We got pretty close. But his drinking got out of control. He had an enabler in me I guess. Or at least I felt responsible. But, I just knew in my heart I could change him. Little did I know, Miss Naivetette. And when things got worse (by this time I had quit drinking and tried to settle down) he became distant. He drifted away from me. And I was heart broken. I tried and tried again to have that "normal" life everyone told me I couldn't have.  But when I couldn't change or help him, I again gave up.

I attempted suicide in 1985. It didn't work. It only hurt my family and true friends. His mother really saved me, and I will always love her for that.

So I dedicate this first page to her, thank you Donna Garris. I love you.