Can My ALS and Mental Disease Go Away?
Organized by: David Purvis
I am a 37 year old father of two (a son who's 9 years old and a daughter who's 9 months old) I have been married for almost 11 years. My family is everything to me so when I was diagnosed with ALS last June it was a devastating shock to my senses in every respect for me.i asked my doctors what that meant. They seem at first more optimistic and supportive but as vists went I was told how devastating this disease alone change individuals and families emotionally, spiritually and practically. I'm scared to death of a picture of me being so disabled that I can't walk, use my hands and feet and I end up hospilized for the rest of my life on ventilation and feeding tubes. I'm totally against my family especially my kids coming to see me when I'm hospitalized. I don't want any of their memories to me of me so sick and unable to give pick them up and hug them. My doctors are optimistic that such a thing is far off. That with medication and dietary change and physical therapy can make my life better. But what is better? I can't live live with this disease and stay where I live. My wife can't be home to take care of me when she is working to provide for all of us. I don't mind being wheelchair pound or needing help to walk but I won't get better. My doctors made it clear its a degenerative disease and that's a death sentence. I pray for hope. But I look at myself and see not worth society's time. When my children were born I knew in my heart I would be a great father and this feels like all that was ripped from me. On top of that I've been previously been diagnosed with major depression, panic disorder, delusions of a psychotic type and ADHD. I've lived my life with one goal in life - to give my family a better life than I had and that I'm going to have. I've been working all kinds of jobs that don't really support my family but keep us from being homeless and hopeless. I feel I would be better off if I wasn't with my family so they wouldn't have to carry so much of the burden and sadness that I exude daily. I've never learned to be a fighter. I lost my belief in God and I'm losing my will to live. I'm not doing this for myself but for my family so they can make it in life and pass it on so two others can make it in life and it can multiple to more individuals and families in society. Please help unite a society and reclaim everyone's humanity. To tell you about me. I was born in New York, New York and raised on Long Island, New York. My father is a retired optometrist and a pastor. My mom is a retried director of a Montessori school. I have two older brothers. I went to catholic school ever since kindergarten until college. I graduated from the University of North Carolina at Chapel Hill with a BA in Political Science. I met my wife while attending college. She went to a different college but her best friend who I knew went to the same school I did. It was a real blessing to be hanging out one night on UNC's campus with my brothers, her best friend, some other friends and her. I don't know what made her do it but she walked up to me and offered me a beer. I politely declined but my eyes never left her sight since that moment. Who I am today is not who I was then. I want one more blissful moment in my life.