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From: Sean Date: 20 Aug 2002 Time: 10:30 AM Comments: Denial, anger, pity, and fear are just a few of the emotions that ran through me as I sat dazed in that small office on a quiet spring day that will forever be replayed in my mind. As my neurologist informed me along with my parents of my new “gift”, I stared helplessly into each of their eyes as if in some telepathic way comforting them. At the same time I began telling myself this was some kind of medical error that would soon be discovered and I would be sent on my way. Unfortunately for me, my neurologist was one of the best in the nation and her patient count at that time of over 1200 patients, which made the odds of an error about the same as winning the lottery. Could she have been that wrong that many times? I think not but I was reaching for anything. I could feel my body go numb and the twitch in my left hand for that moment was obscured by the sharp pain of fear that radiated across my body. Those two words she spoke that morning will forever leave there stamp on my soul as I now was given a new lifetime partner, Parkinson’s Disease. It was as if at the exact moment my life to that point began playing itself back to me in full detail emphasizing those last few months leading up to the discovery. Suddenly my mind skipped forward to a bright sunny day on a grassy front yard off a beautiful yet comfortable home. In the front yard I found myself playing with the three most important people in my life, Nicole and her two daughters Mikayla and Savannah. These three were my world and their presence in my life was my being. It wasn’t a surprise that they would enter my mind to in some way take away the fear, but instead I became frantic with the thought that I would not be involved in the playing rather sitting helplessly on the porch. It was this vision that created a chain reaction, and for the first time in a long time I could feel the tears begin to slide down my cheek. A man once so brave and fearless, I had now become weak and afraid by the thought of loosing a normal future with them. This for me was the hardest thing to swallow that morning, and will forever be. As the doors to the elevator closed, I could feel the strength of my parents engulf that tiny space and my mothers words of encouragement began to echo through my mind. I was at that moment I stepped out into the sunlight, a “NEW “ man. Unfortunately this new man did not bring with him all the positive attributes one may have given such a gift, but rather a few that would later bring me much pain. I’m not sure when I began to feel helpless and empty, as I was numb for quite some time, but I do know that with these emotions came a feeling I would never wish upon anyone. Loss of control, within your mind and body is one of the most horrific transformations one could ever go through. It is as if suddenly you have given over yourself to be ran in a fashion which all along you realize is not right but are unable to stop. I became depressed, angry, irritable and afraid, while all along still denying I was sick. I began to look around at others jealous of them for being healthy and happy, while I drown helplessly into a sea of depression, all the time telling myself I was too strong to be depressed. “WHY ME?” became a broken record I asked myself over and over, not understanding how a 30 year old male who worked out, ate right, no drugs and didn’t smoke could be given such a life term sentence. Its not fair dammit, I told myself over and over, this isn’t in my plans, but constantly I was reminded it was as my left arm would begin to shake. My loss of control feeling was soon consuming most of my days and I found myself arguing with Nicole for no other reason than simply, “YOU DON’T UNDERSTAND”. This phrase had become a constant annotation every time I began to feel sorry for myself. Inside my head I felt helplessly trapped knowing it wasn’t right to be taking it out on those who loved me simply because they were close and now my loss of this control I will regret the rest of my life. What I know now and didn’t understand then was this, I didn’t have the disease, I wasn’t dealing with it, WE WERE. I was so caught up in self pity that I didn’t realize I wasn’t the only one battling this disease, I had someone right beside me all along just as afflicted as I was. I had a true friend standing there holding onto my hand and my absence of understanding cost me to let go of it. I thought I was so strong that I alone could take the entire burden, in doing so I turned my back and two of the most important people in my life, God and her. I soon found that I consuming into my job and traveling in order to hopefully stay away from those who cared so they would not have to deal with my constantly changing mood swings. I think for some, including Nicole, thought I just didn’t want to be around. It was at that time while spending countless nights in a hotel room I found myself embarked on a journey that has literally cost me everything important in my life. I became addicted to the Internet spending countless hours in chat rooms trying to be someone I wasn’t in order to confirm my identity. With these chat rooms came the porn and smut that can become a type of drug or alcohol, taking away the pain and confusion. In this world I was not a person with a disease but rather a well- fit man with a future who was still desired and wanted. Soon I was spending all night talking, chatting and fantasizing in order to relieve myself from the real world I had come to hate. I constantly reminded myself that Nicole would not stick around much longer knowing she would have to deal with this the rest of her life and soon I would be alone even more. For me it was becoming an excuse for doing something I knew she didn’t approve of, but didn’t care knowing she would be gone anyway. I was setting myself up for failure the whole time and didn’t even realize whom I was hurting in the process. Many nights I left her worried at home not able to reach me because of my addiction. Quickly making excuses for my absence from calling her to tell her I was all right. I was stuck in a constant cycle on the computer all night and unable to move out of bed for most of the day. My work was suffering and I was finding myself passed out along roads from exhaustion of not sleeping. I had let myself become entangled in a fantasy world that I became addicted to more each day. When I did reach home I was usually so tired that much of my time I slept and was unable to do anything constructive with Nicole or the girls. The worst thing of all is that I ruined the trust I had swore never to brake between her and I and had become a man full of lies and void of integrity. I had become consumed by a world I had created in order to escape my own. How could I have been so stupid? I often wonder how and why I allowed this to happen, but I stand before you a man with no excuse other than I was sick. It brings no comfort but does bring some understanding when I was told the other day that the number one reason for most marriage counseling today is due to some type of problem revolving around the Internet. Soon our arguments grew more consistent until finally I did something which I swore never to do, I turned my back on the one person who stood there all along giving me the support that I was to deaf to hear. Sure she reminded me daily she hated the job, but instead of realizing it was because she wanted me safe at home with her and the girls, I took it as a personal attack on my career. I thought she was saying my job wasn’t good enough and in my anger I decided to take a macho approach. “ Nobody tells me what I do for a living” along with “I’m a grown man” were two comments I remember making in response to her questioning my job. Looking back now I know that unfortunately someone does tell me what to do, GOD, and no I wasn’t a grown man but rather a lost one. In turning my back I thought I was making the stand that I was the man of the house and that I would do whatever it took to make a living rather she liked it or not. In being so ignorant I had walked away from her in a time of real need and all alone to face a huge challenge, her pregnancy with my child. How her pain must have felt at that time I will never know. It must have been huge, for I now must face it too and it is the worst I have ever felt. I did straighten out long enough to announce in a hall full of customers, co-workers and associates that I was about to be a father. It was amazing that for the first time in awhile was proud of myself, imagining the kind of father I would be. I do admit I was still frightened that this child would grow up with a father who would be to sick to do the things with them I wanted to do. Unfortunately I will never know, for God decided to take back this baby before birth, for what reason I will never know. I sit here still shocked and confused why, but seek comfort that one day I will be with them in heaven. It is not for me to question all things in life, but I do pray every night that it was for reasons that saved Nicole from complications or pain. I have not lost love for this child, nor will I ever, for this was part of me that will never fade away. I continued on my roller coaster existence trying to still comprehend where my life was taking me, all long staring at a giant hourglass of my life paranoid when the last grain would fall. I now was caught deep in a vicious web of panic and fear, trying to pull away from all those around me who cared. I felt that it was better if they didn’t have to “deal “ with me, and with my disappearance soon they would forget. I began loosing touch with reality and self-pity had become my trusty companion. It was those nights I sat empty and emotionless at home that I found solitude watching the girls play that I remember the most. “ How lucky they are” I would tell myself, they have no worries and do not have to go through this pain. Later I would realize that it was these moments watching them I was pulled back into reality and soon I came to understand “how lucky” I had been to be a part of their life. It was in there eyes that I saw the peacefulness and a glimmer of hope. In their hearts I felt the their love for life that helped me make it to the next day. I soon found myself in another unexplained battle with Nicole, I’m sure brought forth by my ignorance and self doubt, but this time she had turned her back on me and rightfully so. It was during this time in looking back that I should have agreed with those around me to seek help, but I was far to “strong” for that. I don’t need no damn shrink or any pills, I’m far too strong. I’m an Olson dammit and a grown man, not some wacko. I couldn’t have been more wrong in all my life. God had sent his message to me in a giant overnight envelope but I was too stubborn to open it. The message I’m sure was this, nobody in this world is strong enough to face that which brings you to the point of self doubt and loss of control within your own mind. Even with ignoring this, Nicole gave me a second chance showing her commitment to never give up. How humble she was to do this even though I was the one who had the problems. We decided to move to California, a mutual decision we both felt would help to make a “new” start and hopefully lead to a life long commitment. Once moved in I became very weak and my symptoms began to take command of my body no matter how much medication I took. Now I was in a state of not only complete panic but also for the first time in my life I was ready to give up. My days were filled with little activity, some days unable to get off the couch and unable to do the things I wanted to with the girls. They had become in some ways so understanding even though they remained trapped within our home trying to keep themselves occupied. I now know that these precious moments we lost together will never be able to be recovered, and for that I am truly sad. I could have learned so much from them, as they were to me two of the best teachers of how to live life a guy could have. In them I realized how even the smallest things in life could make you laugh. They were my mentors and I will forever hold their teachings deep inside my heart. It was during on night I fell asleep on the couch, that I awoke to find myself standing in their room. The light from Mikaylas TV danced across the room showing the two innocent and restful girls fast asleep in the their beds. As I stood watching them the tears began to flow, soon followed by a feeling I’m still not quite sure to how to explain. It was at that moment that I came to terms with what I had become to them and how unfair it was to put them through it. What had I become? Will they ever forgive me? Knowing I needed to separate myself to get help was my revelation but how I went about it was my destruction. I pushed Nicole to the point she could not deal with me any longer, driving her make a rash decision to go back home. I was able to fool myself into believing that I was happy, now they wouldn’t burden me and they wouldn’t have to put up with me. I now know that I was consumed by pity and so full of self doubt that my only reason for existence was to crawl deep within my own shell so I could be alone to deal with my fate. I had been able to tell myself that this was what Nicole really wanted and no matter if I used words to hurt her or not, it was going to be for her own good. My inner struggle fought me clear up till the morning I called her at the train station, as her and the girls were leaving. So much of me was wanting to head straight there to stop her, but I denied my heart and kept on believing it was setting her free, now she didn’t have to face the pain any longer. Alone I sat for weeks in a half empty house filled by darkness from the closed shades, staring into the blackness of a world I had created, void of meaning or hope. It was for me a world that fed off my pity and anger, consuming every ounce of pride I had left. It was if I had been literally cut open to have everything fall out of me leaving nothing but an empty shell. I had become my own worst enemy; a constant battle raged deep inside me trying to get me to quit. “ See I knew it” I told myself over and over, “I knew she would leave”. Who wouldn’t, I had pushed so hard to upset her to that no person in his or her right mind would have stayed. Alone, a feeling that can only be described as one of the most gut wrenching experiences I have ever had. I hadn’t just lost her and the girls, but I had lost my best friend as well. A friendship of many years in the making, and soon the memories began acting themselves out on the blank wall in the living room. I now was beginning to realize what I had done but the big wake up call was soon to take place. Within my confine I began to slowly take back control of my mind focusing on the acceptance of my disease. I had much time to begin thinking, something I hadn’t done in quite some time. Sure I was always thinking, but not like this. It was different, as if someone was doing it for me, I now know someone was, GOD. I’m not sure when he first tried talking as I’m sure he was getting tired of the busy signal he received, just like those who tried calling me day after day during my internet sessions. Then one late night for no particular reason at all, I slowly closed my laptop leaving my fantasy world for the last time. I now stood before him ready to accept my “gift”, not as a punishment but rather as a reward. I had felt for the first time a calmness come over me as if all those who cared were standing before me to be a part of this acceptance. And placed in the front row were two beautiful girls and one lovely woman, the true reason of my existence. I slowly walked over, grabbed the blinds and opened them up to expose the early morning light, I never wanted to close them. Was this some catastrophic event unexplained by any sense of the imagination? I think not, simply god tapping me on the shoulder telling me in his subtle way, “its time”. Time to let go of the pain that had become so unbearable, almost as crippling as the disease itself. I was ready to accept myself for who I was, a man with a disease, not a death sentence. I was someone who had been chosen in some way to better not only myself, but also those around me. A man destined to love unconditionally, living not for fame or fortune, but rather for the love of a family. I had come to realize that success is not measured in dollars, but rather measured by those we touch and how we touch them. I came to accept that for me my success lies deep within my heart, one that never quits caring or loving. We live in a world constantly filled with suffering and pain, but never void of hope. It is this hope that we must look for inside each of us to grow stronger in order to overcome our fears. My hope was first to go during my denial, not by choice, but rather buried under an enormous pile of pity and fear. Pity for me was easy to see, it was the “why me?” of my every waking moment. Fear became my shadow always there and always growing bigger every time I tried to hide from it. My fears have taken from me just about every thing I held close, including three of the people I loved the most. One thing it will never take control of is the biggest part of me, my heart. It is not until one faces their fear that they can become at peace with themselves and truly love not only themselves but also those around them. Am I completely a new man? I wish I could say that I am, but I do know I am growing every day and still learning to deal with my fears. I have learned to let go of those things that I have done in the past in order to live for those great things I will experience in the future. What has changed is my outlook on life and realizing to take each day for what God gives me as a challenge in order to continue to grow. It is my hope that someone reading, even if its only one person, will come to understand their fears and find the strength and courage to fight them. I also hope that they will realize they aren’t in control before they, like me, pay the ultimate price and loose the very thing that I held so dear, TRUE LOVE. A love so strong that even though in my darkest of times I tried to defend but did all the wrong things to try and save it. I stand before you now a humble man stripped of just about everything I ever wanted, telling my story to those who read it. I tell it not to make excuses for those things that cannot be undone, but to hopefully save someone from the loss and pain I have brought upon myself. My name is Sean Olson, and I have a degenerative disease that although is slowly taking my mind and my body, it will never take my heart. Some may say that the brain is the most important part of the human body, but I disagree. For it is within matters of the heart that true strength lies and the love for another that can conquer any disease. To Nicole, Savanah, Mikayla, God, and those who have been there all along, I regretfully say sorry for what I was, but Thank You for helping me become the “New Man” I have become. I love you all with all I am and all, which I will ever be.