STOP THIS RIDE..... I WANT TO GET OFF!!!

When old friends ask, “How have you been?” I have to think before I speak. My first thought is, “You want the truth, huh?” Then, I go with this approach, “Well, I've have had my ups and downs, as usual.” The truth is, clinically speaking; I am suffering from depression as a result of all the stuff that I have been through since October, 2006. All of these problems that I speak of caused me to make the hardest decision of my life. In the name of health or because I would now require help, I had to give up my independent life of twenty years. I decided to give up my apartment and move in with family. Now, throughout these twenty years and despite the odds due to my level of paralysis, I worked hard and had earned this privilege of living on my own. I had achieved independence over my disability and was living in high cotton. In hind site, I was truly happy back then, although financially I barely could make ends meet. However, my life as I knew it is done or erased, and all of my belongings was boxed up and thrown into a storage bin. Would you believe that I have only been living outside of a hospital or nursing home for seven months, since back in 2006? Now, all of my problems started with a cellulitis infection in my right elbow. Due to this infection, I had to undergo four surgeries to remove the infected tissue and permanently close it up. However, would you believe that I contracted the MRSA virus, between the third and fourth surgery? I sure did and this caused me to undergo a six week course of intravenous antibiotic therapy. I was laid up in a private hospital in Norfolk, which is referred to as an extended recovery hospital. I had no problem with this at the time. Hell, if I could be cared for, I’d stay at the Holiday Inn just to avoid being placed in a nursing home (even if it is temporary). When I received the co-payment bill from this private hospital for over $6,000.00 after Medicare paid their part, my jaw simply dropped to the floor. And so, my problems would continue. All of this time in the hospital and being bed bound softened up the tissue on my buttocks. At least, this was the next lesson that I had learned the hard way. I had just regained use of my arm and wanted so much for my life to once again be in my control. Unfortunately, I had totally disregarded the lessons that I had learned on skin maintenance long ago, when I was in the rehabilitation center after my accident. As a result of my selfishness in May, 2007, I had developed three decubitus ulcers on my butt. What in the world? Please God, tell me this is a joke, I beg of you! No, I really had three, stage four holes in the butt. Once again, I returned for another month long hospital stay. Due to the severity of my sores however, this time I had no choice but to be placed in a nursing home. I entered at the end of June and did not leave until the beginning of November. The reason I left is because I simply could not afford to be there. Well, I could if I turned over my entire Social Security income, minus forty dollars, as mandated by the state. Forty dollars is what a nursing home resident is allowed to keep for personal expenses. I had already made a commitment with my family to pay rent for the room and boarding at there house, but the state of Virginia did not care. I am a man of my word and even though my wounds were not healed I had to leave the nursing home, because forty dollars did not cover my rent. My family was not concerned with the money, but I had my pride to consider. I was now receiving nursing care in the home, until my next scare. In December, my wound specialist ordered me to have a MRI and the results of this test revealed that I had a possible bone infection. And, once again I returned back to the hospital in the beginning of January. However, during this stay I had two other forms of testing that determined my bone was not infected. Wow, this time I really got lucky. Throughout my disabled years however, I have seen people lose their limbs (even worst) and it all started with a decubitus ulcer. Yes, I was spared this time, but not promised to be as lucky should there be a next time. Therefore, I had to cowboy up and make another life altering change. To this day, I cannot believe that I made this choice and the decision has left me with even more psychological effects. I remind you that my pressure soars have had me confined to bed since last June, 2006. However, because of my close scare with the bone infection, I elected to get a colostomy. Prior to my decision and surgery, I had fought tooth and nail against having a colostomy with anyone and everyone that has ever suggested it. The reason that I chose to do this now was to help my soars stay clean, free of infections, and to heal. In other words, I chose to do this in the name of my health and figured that I would wrestle with the mental aspects of this procedure later. I barely had recovered from the surgery and off for another nursing home stay I would go. Now, the only reason that I chose to go back into a home was to learn how to manage and be educated on the colostomy. However, I was kicked out of both of them before this could be done, because I lack insurance. Neither the hospital, nor the nursing home, had substantial evidence or knowledge that the colostomy was properly working before they released me. To this day in order for the colostomy to function, I have to take laxatives to move my bowels. In addition, all that I was taught is how to clean the ostomy site and change the bag.  Ever since my surgery, I have had consistent abdominal discomfort and spasms, which has left me taking pain medicine nightly. This was considered to be normal in the minds of my doctors’. At the same time, this has been a major blow to my self esteem or psyche which I had expected it to be. When it comes to relationships and romance, my disability has already been a proven repellent with all, but a handful of women that I have met throughout the years. I know that this is not because of my personality. I have received compliments and praise from the majority of people that I have come in contact with. Now, I have to pray that I will meet a woman that will not only see beyond my paralysis, but also my colostomy. I cannot see my future, but I surely do fear that this now means that I will never find a woman who will love me and in return accept my love. I'm afraid that this last operation was the end of my possible love life and chance to be intimate again. Spiritually I cannot understand why the Lord cast all these trials on me throughout my short life. I want to understand why and be a good servant unto Him, but when I have my doubts I know that I am being disobedient to His word. I realize that there are people in this world that would gladly trade their problems with me and so I should be thankful. However, the human part of me wants to complain and understand exactly what it was that I did in order to deserve all the pain, heartache, and affliction that I have been through. I am by no means trying to make a sermon out of these thoughts. However, I do want to stay true to my love for Him. I have simply been dealing with more stress and problems than I really want. I do not like hiding all these depressing thoughts and feelings that I have inside of me. During this last nursing home stay, the one positive was, I was able to discuss some of my feelings and problems with a shrink. I had three sessions and this was very therapeutic. I had forgotten exactly how good it felt to feel good about myself. I cannot wait until I am able to go to her office for regular visits. Thanks be to God, the soars have closed up and soon I will get back to sitting in my wheelchair and living some type of normal life. However, I have no idea what normal means anymore. Although I am living with family, I am living in a nuthouse. This is not my lifestyle, as I know or remember it. I don't really know who I am or have become. I am thankful that they took me in, but I'm not happy living here. Because my sister is helping me and this is her house, she actually believes that she has the right to talk down to me, to cuss me, and treats me like a child. My therapist at the nursing home reassured me that this is wrong. She even validated my feelings on several other issues where my sister and I disagree. The greatest advice she gave me to practice while living here was to use the “Serenity” prayer [God grant me the serenity to accept the things I cannot change, to change the things I can, and the wisdom to know the difference]. By living here, I am forced to hear a bunch of screaming and yelling, on a daily basis. This and being physical is not an acceptable form of discipline for me. I hate it! I had to wait eighteen years to be free of that life when I was old enough to leave my dad’s house. While I lived on my own, I was the only one that could raise the roof and disturb me. In addition, none of my family members ever knew “all” of the specific details about my life and the work that it took to function on a daily basis. This is especially true when it came to the routine demands of the bowel program or unexpected bowel accident. In fact, prior to my colostomy surgery, my sister was the one who preached the loudest for me to have this done. She would screams as loud as she could that this would make my life easier. Sadly, my sister believes screaming to be an effective tool in communicating. And, being the great wise one who knows everything, she said that I was refusing to do so because I didn't want to be more independent. She believed that this would make my life so much easier. Well, the truth has finally smacked her in the face. Because I am a quadriplegic, I do not have the finger dexterity to perform the maintenance and change my bag when it gets full of stool. Therefore, I have required her help and she has finally admitted that this is a task that is difficult for her to handle, but not in those kind words. Instead, as she yelled at me the other day, she stated that she can no longer handle helping me with the colostomy bags routine maintenance. In addition, she can no longer handle getting up and helping me turn at night either. It is necessary for me to be turned and this was not an issue when my niece lived here and was doing the majority of this duty. Once my skin toughens up, then I should not have to burden anyone with turning help. However, this was just one more thing about my needs, due to my disability, for her to make me feel guilty about. A couple nights ago as I pondered on her words  I realize something, I was a simply amazing quadriplegic of a man when I lived on my own, because I never complained or thought even once about quitting when things became more difficult beyond the normal routine. My family has been there and cleaned me up when I had bowel accidents or wet the bed on numerous occasions, more so than I can even count. However, this pride that I just spoke of is for all of the occasions when they were not there in my time of need, yet I survived. My sister has every right to get frustrated when the going gets tuff, but dog gone it I am a human being and not a machine. I have feelings and she has to learn how to respect me, whether this is her house or not. I am tired of living under her thumb and fearing to speak my mind for what I might say. Before I was released from this last stay at the nursing home, I tried to explain my feelings to her. However, her response was, “When you come home, you are going to respect my (her) house!” Slowly I ingested these words and calmly asked, “And, how have I ever disrespected your (her) household?” To which the best thing she could say was, “You will allow me to vacuum and dust your room!” Can you say “what,” because that is what I was left thinking the rest of that night. I love my sister very much and I assure you that I am not writing this to shame her name. However, to simplify things, my sister is a control freak that has obsessive compulsive disorder. When it comes to this household, she must be the one who controls and dictates everyone's life in this house. Two of my nieces left out of here, because they could no longer handle being here. Now, I have found myself at my wits end! I have decided that when I am healthy enough, I am going to look into seeing if I can get help. If my wish will be granted, I want to get financial funding to be admitted into a rehabilitation center. Therapy will best benefit me to restore my body and mind, due to all the things that I have mentioned going through since 2006. If this does not work, then I hate to think this, but I guess I'll have to consider find a nursing home or something. I am simply tired of this emotional rollercoaster ride that I have been on. I never asked for this ride, but I sure as hell no that I would like to get off of it. So friend, this is what has become of me and exactly how I have been. Are you glad that you asked?