What's it like to die, speaking from the Heart....

I'll do my best to dig deep enough, to tell you what's going on in my head, I'll write it as it comes to me. Let me start by saying, we all die someday, some young, some old. Only God has your time allotted. Read the story @ tomorrowisnotmine.com "A person's life is not measured by time".... I'm sure we all feel we can guess our lifespan, I'm an example that we cannot.

My feeling right now are more peaceful than when I found out. Mentally, I'm a 100% focused.
I'm over the initial shock of going, from asking for God's help with daily affairs to asking for the courage and strength to face the ending of my life as I know it. What I learned so far is that
dying is the easy part. But when you are staring death in the face, it's a whole different ball game, it begins to dawn on you, this is real. You are coming to the end of your life on earth. You start searching your soul, figuring where you on going after death. It's like haven't done anything real bad to deserve hell, yet I know I'm not deserving of Heaven, so I figure I'm somewhere between. (Hopefully closer to Heaven). The physical part is very overwhelming. Worrying about people you're leaving behind. Thoughts running wild, to my wife will she be OK, to my children all I can give them is my blessings. My youngest, seven year old daughter, doctors advise not to tell her to much, the later stages will be hard enough. It appears all things that overwhelm you daily is now not as gripping. I am now faced with figuring what kind of time frame I might have, and when parts of body will die off. I am forced to distinguish if I am doing too much, verses not being able to finish others. As each stage develops, I notice more of what I can't do anymore, I have a sense of urgency building in me. I figure, when you can't do something, figure another way to do it. ( I was getting creative) This disease is progressing pretty rapidly. At this point it's not what you can't do or another way to do it, it's about accepting you can not do it anymore. I'm experiencing a multitude of emotions, so each feeling I try to replace it with something positive. Everyday I try to advert my attention in on productive and positive things. Buttoning shirts, zippering my pants, showering and drying off are becoming very difficult. My equal Librium is now being affected. I always like sitting on floor, but now I finding a need to ask for help getting off the floor. I want to stop at this point and share something I've learned. Dying and a description of an illness that is crippling you, are two different things. What I found is part of what it feels like to die, is knowing what is it that you are dying from. Unfortunately there are a lot of ways to die. So explaining what it feels like to die physically will definitely be different too. I have noticed I've been writing down a lot of things, like if the computer breaks down, will they know what to do, I might not be able to do it anymore. I'm feeling a need to get things done. In the beginning I was in shock, no not me, why me. Getting mad at God, why did you have to choose me, what did I do to deserve this. Then it hit me nothing happens unless there is a reason, maybe I'm dying to save my soul. Maybe I'm dying or my children, my family. I feel a need to step back and understand there is a bigger picture here. My death might also be just that my time is up. I don't want to die, but if my death is for a more important reason, I stand bravely before God. I know He can heal me, Doctors and technology things can change overnight. But when and if it comes I have to be responsible and get my house in order. I don't have time to morn, trying to cast away any negativity. It's time to give to my family and people that are dear to me, bits and pieces of me to remember. Hopefully it will help, protect and comfort them in the time ahead. A time say and do things you feel you might have missed. A complete self reflection, tie loose ends, correct mistakes, weigh the good and bad. To let go of any regrets, (thank God I have no regrets) let go of things as we know it. Cherish the time I have with my wife, children and loved ones. I want to get back to my illness. As each day passes, muscles are waisting away, the normal and basic things become hard to do, some things you can't do anymore. The emotions are becoming greater as my illness progresses. Denial, anger, sadness, confusion and fear. It makes me want to cry knowing I used to curl 70 lbs, now it's 5 lbs with a struggle. Many years of martial arts and now I can't do a simple kick, can't punch the bag, hurts my hand. My throwing pitch was clocked at 68 mph, now you can't even throw a paper airplane. My range of motion is becoming very limited, trying to stay active, stretching, keeping busy.
There are times I like to be alone, I go into the garage, turn the music up and dance. Can't sing anymore, no more karaoke. Focusing on making each day productive in some way, getting up early making a full day of it. My mind and body are on high alert. Can't help thinking, that my odds of dying is extremely high, yet if I live through this, I could paralyzed from the neck down. The few fears I have, is knowing in the near future, hoses and bags will be attached surgically to my stomach and neck. Also, most importantly making sure you're right with God. The muscles all over my body, are pulsating more consistently. Question is, what happens when the pulsating stops? I think that will signal, body are on the edge of collapsing, never to respond again. At this stage its more about reality setting in. I'm trying not to look too closely at the disabilities or barriers, but rather, focusing on what I can still do and staying alive as long as possible. My hands are starting to become stiff. A few fingers are curling up, some not responding to basic tasks..... I'm told for many people at this stage, feelings of emptiness, sorrow, hopelessness, are elevated and most times over whelming. For me, it's a time to stay positive, be brave, hope and pray that things may still have a chance for the better. Need to keep smiling, laughing, joking in this time of adversity. I was told along time ago, that laughter and song are the secrets to happiness. Sometimes just the thought of what is happening makes you laugh, laughing to replace the tears. Now I find myself thinking beyond this, beyond my life. What's it going be like, did I do more good than bad in my life. Heaven and hell, so beyond what you and I can imagine. I was thinking last night, how can people think there is nothing after this. I don't believe we were put here, to go through many trials, to live your life and then it's over, oblivion? If that was the case why were we born at all. So as for my thoughts some are normal, some to be expected and some wild and deep. So to me that's what it feels like to die. I talked about dying in many forms, yet I am a true believer in miracles, doctors and technology. There are many people praying for me and I have no doubt God can turn this all around and heal me. In a frightening time such as this, we all go to God praying and pleading to survive. If this is my time and there is a greater cause, I stand bravely, accept my suffering and whichever is before me. I offer up every bit of suffering for my family, friends and my neighbors. Try praying and offering your suffering your soul, your enemies, people who have hurt you. Wouldn't make sense to do all that, in hopes God will have mercy and forgive our sins. Hope and Faith stand stronger in me and knowing the love of God, mercy is what I pray. To me this is a time to hold on to my inner peace, calm in the mist of a storm. Please don't take me preaching in your ear, I'm just giving a true accounting of what's it like and my views as I believe. For a final word, I have a story I'd like to share with you, one of hope and belief. I try go as much as I can to a prayer meeting at St. Charles Church in providence (every Thursday@ 8:30pm in the basement of the church). A lady while praying had a vision of God standing behind me, welding my brain. She told me he didn't understand what it meant. I told her, I did! Welding is for bonding, repairing, wires can be welded together and wires simulate nerves.... (God, welding my nerves together).
I written a few poems over the years and I promised my Doctor I'll write one more. So if you will, and it would make me please me, if you would check it out. Go to; " Poems from the Heart" I hope you like them and be watching for a new one wrote. (working on it 6/12/09) I hope it touches you in a special way. Thank you for taking the time to be brave and read my story, please pass it on. Something for you to read from the Bible, go to; Sirach 38 (sickness and death) If my story affected any one's life in a good way, it was all worth it....So keep my family in your prayers and may God have mercy on my soul. God bless and give peace to you and your family...

" Envision this " will be a section of everyday tasks...

1) A Shower taken lightly.... Hard to was your face...(contin..)

2) Getting out of bed....Isn't easy anymore...(contin..)

3) Going places.... Can't drive anymore...(contin..)

4) Dressing for breakfast.... Zippering and buttons are...(contin..)

5) Eating in the shade.... Feels primative to think you... (contin..)


(under construction), come back for updates and completions....