Well, a few days have passed since my latest experience and I have asked lots of questions to those that were around me, trying to fill in the void. I think I now have a handle on what happened that night for all those around me. I hate his disease and what it is doing to not only me, but what my family and friends are going through each time it raises its ugly head.
But Susan was the first to ask me questions. Not the normal, “how do you feel?” Is there anything I can do for you?”, but the “what was it like” question. What did I experience during that time they were working on me, saving my life?
I remember the trip to the emergency room. I remember sitting in the waiting room and getting agitated that it was taking so long. I didn’t want to be there, but knew it was exactly where I should be. I remember just wanting to go home and curl up on the couch with Susan. Shut the entire world completely out. Just the two of us.
I remember getting light-headed and dizzy and blinking and trying to focus my eyes because when these episodes start to happen, my vision gets blurry and I try to fight it off. I vaguely remember Susan standing in front of me, calling my name, but I was getting pulled away and her voice was getting fainter and fainter.
Then everything went BLACK. That’s it. Black. I don’t even know if I was aware I was gone. For anyone that has ever had any type of surgery, it’s the same thing as when they are putting you under anesthesia. They tell you to count backwards or some other silly instruction. You hear their voices but they are fading away and the next thing you know, someone is calling your name trying to get you to wake up. That’s it. That’s the best way I can describe how it feels for me.
Now, that brings on the philosophical questions. Wonder if that is what death is like? You just fade away to nothingness. It’s just the end. Lights out. Of course there are several reports from others of their near death experiences. You’ve all heard that they either see a bright light that draws them into it, or a deceased loved one appears and talks to them, telling them it is okay, to go with them. Then there are the stories that people have out of body experiences. That they are outside themselves watching what is happening around them. Those are cool stories, but they’re not mine. I have nothing. No recall of anything but black. Maybe it was because God isn’t ready for me yet. My work here is not done.
That brings a whole new line of suppositions and different religions have different opinions of what happens at your time of death. And of course none of us have had a conversation with someone that has died to get a report from the other side. So what really happens? There are those that believe that you are buried and on Resurrection Day, you will rise from the grave. Now that sounds scary to me. More like a zombie eclipse. I have heard stories of graves that have been opened for various legal reasons after death, and I understand that’s not a pretty site. I would hope that day I meet God would not include seeing these corpses walking along side me.
Then there are those that believe at your time of death, your spirit leaves your body and flies directly to your eternal home. So I guess you would either see the Gates of Heaven, or the alternative. I guess that would leave one to believe that if you have led a proper life, you are instantly an Angel. And if you didn’t lead a proper life, well, let’s just sayFloridain August doesn’t seem so hot now. And it would give credence to those who think there are angels walking among us. Now Catholics believe in Purgatory; a place where you go until you are prayed into Heaven. So, does that mean if you don’t have enough prayers, you stay in this place forever? Well, if you aren’t in Heaven, and you aren’t in Hell, you’re in Purgatory? Well. That doesn’t make sense to me either.
So, what do you believe? I would really appreciate it you would take a minute and leave a comment at the end of the story of what you truly believe in your heart that happens at death. And please be serious. You don’t have to leave your full name, heck; you can even make one up. I would just like to see how others picture the end of their life. I have to admit, I hope I am leading the kind of life that God approves so I will spend eternity in Heaven. I also have to admit that there are days that I wish my life was over. But, most of all, I do have to admit I am afraid.
Now let’s talk about physical changes. I am now beginning to understand how others have described MSA as being locked in their bodies. My mind is still as active as ever, but my body just won’t do it anymore. It’s a good day if I can spend a few hours out of bed. I am always so tired. No energy to do anything. I have finally gotten through my thick head the concept of pacing myself. I really have to do things in small increments now. If I have a day coming up that I know I will be required to be up a lot, I try to stay down and rest to stockpile as much strength as I can. I can honestly say, this part of the disease, or as this disease progresses, makes me want it to end that much sooner, but I promised Susan I would not give up.
Okay, let’s talk about some positive stuff happening. When I came out of surgery on January 2, I found out that I had been given the honor of being named a MSA Ambassador on the Multiple System Atrophy Awareness Month website. They pick persons that are making a difference and bringing awareness to MSA and honor them with a special MSA “badge”. I was truly surprised and honored with this recognition.
On March 31, 2012, the Dayton Barefoot Runners are sponsoring a 5 Mile Run/Walk inFairbornto raise money for MSA research. For more information or to register, visit:
http://www.active.com/running/fairborn-oh/5-mile-run-walk-for-msa-2012
Or if you can’t attend, you can donate at:
http://www.active.com/donate/multiple_systems_atr
They are looking for Corporate Sponsors for a $200 donation, but anyone can contribute to this very worthy cause.
To see what MSA does to a person, please view:
Multiple System Atrophy MSA.m4v at www.youtube.com
This film has been entered into the 2012 Neuro Film Festival from theAmericanAcademyof Neurology Foundation.
Please continue to pray not only for me and my family, but for all those who are suffering from horrible diseases that rob them and their families of life.
And don’t forget, please take the time to share what you think happens at death.
Until next time…..stay warm and be well!
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Frank, thank you for sharing with all of us your personal fight with MSA and for asking input from your readers on our opinion on what happens after our death. I’m a theological seminary graduate, so my opinion reflects what I have studied in undergraduate and graduate school on this subject. As you say, most religions have some teaching on the afterlife. But since none of us have had the opportunity to interview a deceased person, what each of us believe is highly subjective. I have to believe what the Bible says on the subject is as close as we can come to the truth. But even more important is what the Bible says about us in this life. You mention that you hope that you have lived a good enough life so that God will welcome you into heaven when your time on this earth comes to an end. I like to think that all of us are hoping for that same ending. The Bible tells us something a little different. God doesn’t necessarily see us as we see ourselves. He says in Psalm chapter 14, verses 2 and 3: “The Lord has looked down from heaven upon the sons of men to see if there are any who understand, who seek after God. They have all turned aside, together they have become corrupt; there is no one who does good, not even one.” Again, in the Old Testament book of Isaiah, chapter 64, verse 6: “For all of us have become like one who is unclean, and all our righteous deeds are like a filthy garment; and all of us wither like a leaf, and our iniquities, like the wind, take us away. If God sees all of us this way, how can any of us expect to go to heaven to be with Him when we die? According to the Bible, we can’t because none of us will ever be good enough to spend eternity with Him. God knows this and yet, He still loves us, even though “our righteousness is as filthy rags.” He has made a way for us to be forgiven of our sins. He sent His Son Jesus to this earth to die for those sins that all of us have committed and continue to commit each day of our lives. God says that the penalty for sin is death, eternal death, total separation from Him. Jesus paid the penalty for our sin through His death on the cross. If we believe this and accept His death for us and ask God to forgive us of all of our sins, He promises that He will and that through this acceptance and repentance, we will have eternal life with Him in heaven. I hope that this helps you.
Don,
Thank you so much for your insight into death. I know that I will never be worthy of entrance to heaven with my works here on earth, but I trust for the times I am the least worthy, God will see that do try harder to follow his word and help my fellow man by either sharing my faith or my experience with MSA.
God Bless.
Dear Brotherinlaw , everytime we know of your collapses and things that this disease takes away from you saddens us and tears us up how a diseases could be so cruel. My heart aches of what it puts you through and my heart is so heavy in knowing what it does to my sister. I know you worry about everyone because that is the way you are but I am glad you are starting to worry about yourself a little more and taking it a little more rest for yourself. I know you don’t like the disease taking your get up and go from you. You need to rest and thrive at whatever you rest up for. We wish we were closer to be able to help but always know we are a phone call away. We pray research can find cures . Until that time please take cars of yourself. Love you guys. Your sisterinlaw
Tina,
We appreciate that your heart is always here and Susan knows if she really needs you, you would be here. You just know how stubborn she is.
Frank, the Bible is very specific “to be absent from the body is to be present with the Lord.” so I feel very certain that at the time of death we are eternally with our Father in Heaven. I think those of us who have loved ones on the other side look forward to being with them once again.
Bob and Kay,
I choose to believe that is the wa it will happen. Once I pass through this earth and leave this body, Heaven will be there with arms wide open to welcome me. think that is the only way both Susan and I can cope with the enevitable.
GOOD Tidings. When we step out of our flesh body, our Spirit and Soul Instantly steps into our loved ones Hearts, with GOD/Christ. Which is where the Holy of Holies is, where GOD/Christ sit’s on His Throne. GOD/Christ is always with us!
Big problem is WE like to sit on GOD/Christs Throne and Rule our own world. We must Repent for our sins and our Iniquity and get off of Christ’s Throne, and let HIM sit there and Rule our world.
Phillippians 2:15 That ye may be blameless and harmless, the sons of GOD, without rebuke, in the midst of a Crooked and Perverse nation, among whom ye shine as Lights in the world. All through the Bible GOD/Christ speak of Hating INIQUITY. What is Iniquity? It means twisting GODS Word into mans words, making GODS word Crooked and Perverse, False. We MUST throw out our all of our religions beliefs and Repent for our sins and Our INIQUITY and turn from them. Then we will Hear from GOD/CHRIST, that still small voice from within YOU. He wants to teach us His Truth Himself.
GOD Loves Jews and Christians because they Try to Please Him. There is some truth in all religions. We, along with our priests, pastors and rabbi’s have used our own Carnal mind and reasoning to follow GOD and the Bible. But don’t blame the teachers, no one could know until today, GODS Truth. This is the MYSTERY that GOD/Christ speaks of often, as in 2 Thess. 2:7. There are over 4,000 Christian denominations, GOD hates ALL religion. Christ is soon going to destroy all Religion and Pride etc., all those that don’t repent. Time is up, HE wants to teach us ALL His Truth Himself, from within.
Today is Judgement Day, For 2,000 years GOD has allowed us to believe anyway we wanted. But to GOD it has only been 2 Days. Today is the 3rd Day, the time for Resurrection, the time to be Saved and to Enter the Kingdom of GOD. Which we can while still in our flesh body.
Today, we live in a flesh body but Everyone is Spiritually Dead! Until after we repent for our sins and Iniquity and turn from them.
Look around all the earthquakes, tsunami’s, fire, heat, cold, rain, snow, tornado’s, financial crisis etc., these are the birth pangs of the new age. Which soon will be Awesome, for soon Christ will destroy all Evil ones, all Pride and Greed, it will be Wonderful for all Eternity!
If you want more info. send me an e-mail, I have a long letter that I will send you. I am a servant of GOD HE called 144,000. of us out (Rev. 14:1) to learn His Truth, and to Proclaim HIS Glory! We serve a Mighty and Powerful GOD in all His Glory! It’s a GREAT DAY!
Donna
Donna,
Thanks so much for sharing your experiences. Hopefully we can all one day be shed of these human bodies and life free with no pain or other disease.
Frank, I take the Bible at face value: I trust in Jesus Christ alone for my entry into heaven. I trust in Him; He stands in my stead. It is not what I do that will gain entry into heaven. It isn’t even who I know that will gain me entry. Listen carefully: it is who knows me that gain my entry into heaven. The Bible says that Jesus has known me from the beginning of eternity and that because of this I have been empowered by him to trust in Him for my entry into heaven. Let’s declare our trust in Jesus together! In this way, I’ll see you in heaven my brother!
Amen Doug! Thanks for being a great supporter!
Dear Frank: I too, like Doug, take the word of God as truth. “I am the way, the truth and the life…NO ONE comes to the Father except by me.” It is simply this: Believe on the finished work of the cross. It is only by sheer grace that I can, one day, stand in His presence, forgiven and free. Heaven is real. Until I do see Him one day, those that know Jesus ( it is NOT a religion…but a relationship…) will be assured that nothing I can do, nothing I can earn will ever be enough to get into Heaven. It is a “gift of God..” Accept it…by faith.
Thank you Trissa. You are always such positive energy.
Well I must say I loved your writing of After the Scar. OK in my life time I had the two real life and death experiences. The first time was when I gave birth to my son. A day after I gave birth I got an infection that went threw my body. My temperature rose to 106 when they found me passed out on the hospital floor. I just remember hearing them call a code blue and I was floating above the bed. It seemed like a long few minute but then I woke up my body was back in the bed and wondering what had happened. The next time I was hit head on by a drunk driver. They say I coded in the ER but I have no memory of floating then, you are right it was just like when the lights went out it was like being put under for the OR. I was in a coma for 5 days, during that time I relived the past, heard voices I had not heard for years. It was like being in a nightmare I wanted to get out of. You do come away from those things counting each day you have. There is a peace that life will be ok. Holding a little tighter the people close to you. One last note to this story thru all of this and a divorce the little boy I almost died over having , died 26 years later to a massive heart attack. He never knew he had a bad heart, Tim was Motherhood and apple pie/ Graduated at the top of his class at the Univ. of Delaware, had the two small boys. I want to believe he felt no pain and is there waiting for me on the other side. I had found myself not believing it after my experience. I have to believe it now that seening my son again will be my last happy thought when I pass thru this life again.
Sally, first let me express my soorow for the loss of your son. I can’t imagine what that would be like, but I agree that those of us that believe will see our loved ones in eternity.
God bless you!
Hi Frank. First let me say you are an inspiration and powerful MSA advocate! I’d like to share a brief personal story with you. My mom has been in heaven for almost 6 years. My stepdad passed last summer. While sitting with him in the hospital, he began calling my mom’s name and reaching forward with his hand. I asked him if he was seeing her and he said YES! In an almost annoyed tone like I was asking a stupid question:) I can only share with you what I believe, that my mom came to get him. He passed 2 hours later, and he was NOT afraid. I pray that my mom comes to get me to walk me to heaven when it is my time. I pray every day for you and your family and I thank Frank DeMartini for faithfully sharing your articles.
Joan,
Frank DeMartini is a great guy and once he heard of my situation, he stepped up to the plate to do what he could to raise awareness for MSA.
I guess I can’t say that I am afraid because there are lots of times I wish this life would be over because of the way I feel. I am uplifted that your father saw the other side and also wass not afraid. That seems to be the perfect way to go. Happy and looking forward to our eternity.
Just do what the good book tells you and you’ll be fine Frank. And once all this is behind us, we’ll feel so much better.
Absolutely Frank! I am looking forward to days without pain and limitations as I am sure others are too!
Frank,
I was saved in 1963 when I was 23. Oops, you might be able to figure out my age. Anyway, since I have been saved I have never doubted that I will go to Heaven when I die. I get excited sometimes about it. You know that I have been sick a lot and one time while in the hospital I had an out of body experience where I went to my church on Sunday. When my brother came to see me that afternoon I ask him if these two people had started a song at a certain time in the service. We don’t know what is going to be sung and do not know who is going to preach. He said how did I know about the song and I told him I was there for a while. He was amazed. It was the song that I had heard.
I believe that when I died I will go to Heaven to be with Jesus and all of my loved ones. I prayed so hard for Jesus=God to save me of my sins. You will have a feeling in your heart when this happens. Maybe you already have that feeling. I love you and Susan and it is hard sometimes hard to even thing about. I have so many problems with my MS, but it is nothing compared to yours.
Just pray to God to save you. It is so simple, but we have a tendency to make it hard. Just be as humble as a child and you will be saved.
Love you, Phyllis
Phyllis,
LOL, all I saw was that you said you are 23! I agree we as humans try to make the simplest things harder than they need to be. I am trying to just follow the 10 Commandments and be kind and help others as I can. I believe those things with a big dose of belief is the true receipe to finding heaven.
Your words strike a chord for the anxiousness we can all face and yet put off because we believe there is another day. I believe at the end we will be brought into the presence of God not for our own deeds but salvation through faith – that Christ died once for our sins and those of all believers so that we might be redeemed even in our worrying doubting selves. It is easy to say and yet harder to believe in our heart. In a small way kind of like letting go to fall backwards to those who would catch you -the ultimate test of faith is to give up control and that is something I know yet admittedly struggle with regularly – I think God understands.
Thanks you for your winess
Randy
Thanks for sharing Randy.
Frank, you have been given excellent biblically based answers, telling you that believing in Jesus is the way to be certain you will go to Heaven. It seems that the only unanswered question you might have is what “believing in Jesus” means. The simplest explanation I’ve heard is this: Think of a chair. You can look at a chair and believe with all your heart that the chair will hold you, but when you decide to sit in that chair, you are trusting that it will hold you. That’s where it goes from something you believe to something you trust.
Believing in Jesus is trusting that his death on the cross paid for every sin you’ve ever committed. It is God’s gift of grace and has nothing to do with your behavior. It isn’t about being good enough. It is about agreeing with God’s plan to rescue you from the penalty that is due you from the sins you’ve committed. His grace plan was to send his son to earth to die for your sins. That’s why we sing Amazing Grace. It truly is amazing!
In the Bible, in John 3:16 it says: “For God so loved the world, that he gave his only begotten son, that whoever believes in him should not perish, but have everlasting life.” Frank, my prayer for you is that if you have never believed (trusted) in God’s grace gift payment for your sins that you will do it now so that you may know that you will live forever with him.
~Janet Monk
Janet,
Amazing Grace is my favorite song. It’s just so hard to believe that I could be deserving of his love, but I try to put it in perspective of being a father. I love my daughter, unconditionally. No matter what she does. I may be sad or disappointed, but would always welcome her home with open arms. I have to trust and believe my heavenly Father has the same unconditional love for me and I try to live my life as to not make him sad or disappointed.
Thanks Janet!
Dear Frank. It breaks my heart that you and my daughter has this awful burden on your shoulders. I believe all of the above answers about going to Heaven. My brother Morton, who died a little over a yr. ago…died once before and he too, like others, saw and talked to an angel. They gave him a choice to either go on, or come back for a little while longer. He ask to come back because he was afraid his wife was too sick for him to leave then. So he came back to us. Then later..a few months..when the drs. told him that there wasn’t anything wrong with his wife..brother said he was ready to go on home, meaning Heaven. Two weeks from the day he told me this, he was in the hospital, laughing and joking and coming home the next day. That day never got here. He told his minister that evening that he was ready to go on. Just a little while later, he flat lined and was gone. The nurses were all shocked.He was doing so good.but Jesus needed him. He was a minister himself, but his health kept him from doing that job. But he went to church faithfully. You never saw him with out his Bible.Just remember that jessus said, to Knock and the door shall be opened…and seek and ye shall find. That is all there is to it. Knock at Jesus door, ask him for forgiveness for every bad thing you every did..ask the person you might of done harm to ,for forgiveness. Don’t cuss,drink,steal,lie or do any wrong and you’ll have nothing to worry about.You seek the Lord and he will tell you to come on in. . Frank I love you and I am glad you love my daughter so much and have made her so happy all these yrs. I keep praying that God will heal you. But he may have other plans for you. But just don’t give up. So glad you came for Christmas. If anything I can do…just let me know. Again, I really do love you.
Mom Hall
Dear Frank,
I am not one to blog or do facebook or anything else like that and I certainly do not usually enter into religious or political discussions. It is not my nature. I tend to feel that politics and especialy religion, are a private matter. But I did feel like I needed to reply to this particular venue. Although we are brother and sister-in-law, our geographic distance has prevented us from being close. But over the years as I have seen how much you care about my sister, my neice and the community, I have grown to have a deep respect for you. This has grown even more as I have watched, albeit from a distance, the struggle you have had with this horrible disease and the dignity with which you have dealt with it. I daresay that few of us could have handled it any more gracefully or graciously. I admire you and my sister Susan so much, and wish daily there were something more that I could do for you both of you. I am not an organized religion person. The years of growing up going from church to church trying to figure out where we belonged and dealing with some of the hypocracies have tainted me in that regard. I do however, believe in a much higher power and that more than anything, there will be peace, a freedom from burdens and pain and sorrow. I think it is as individual as each of us are. For me, it would eternally on a forrested hillside overlooking a verdant valley with the sun warming my face, either meeting or being joined by my soulmate. For some that might seem irreverant and hopefully no one will be offended, but you asked what it meant for each of us and that is my vision. More than anyting, I wanted to take the opportunity to tell you my feelings and my how much I pray for the both of you. They are not things I verbalize easily (especailly face to face)and for that I apologize. I truly wish that we had lived closer and had more of an opportunity to share in each others lives. Please know that I am there for both you and Susan in whatever you need and that when the time comes, I will be there for Susan, however she needs me. I know you worry about that. Have faith that God has a plan even though we may not see it. I love both of you and you are in my prayers constantly. Love, Debbie