I must admit that in the five years since my ALS (Lou Gehrig’s disease) diagnosis, I have been a bitter man trying to understand why this happened to me. After years of struggling through the daily challenges of a marriage, raising children, and constantly grabbing at my economic wants, I have ALS. Just when life was getting wonderful, I have ALS.

This disease usually strikes people between the ages of forty and sixty

Recently I have been trying to make sense of all this while accepting the fact that there is no solution. I was hoping that somewhere, someone had written some sort of guide book to go along with this unpredictable journey. Sometimes life will send things our way that seem almost unbearable, and with that usually is followed by discouragement. You need to understand that by contracting ALS you have been singled out and your final days are in front of you. Therefore, I turned to the Holy Bible to see if there is an explanation that speaks of terminal illness and that popular "Why Me" question.
In my religious quest, I have scanned, searched, asked numerous questions and there seems to be a positive answer and verse for everything. Some Christians give some pretty weird answers to the question of "why." Things like, "you didn’t have enough faith." Others like to add things like, "Claim the promises of God and He’ll heal you." Some people have even been bold enough to say, "you should have relied more on God." A select few still believe in the "laying on of hands" to remove any illness.
I remember a sermon given by a minister, many years ago, who was diagnosed with ALS. The once vibrant, outgoing Pastor, was placed in a nursing home, rapidly losing his muscle strength and swallowing abilities. Why him, and why was his service to God interrupted? One of his testimonials was that God gave the apostle Paul a "thorn in the flesh,", this weakness, this illness, and even though Paul prayed for relief, God allowed Paul to live with this weakness for the rest of his life. The discussion continues that the thorn may have been a symbol used to represent any illness. I think the strangest explanation comes from 2 Corinthians 12:7, that your illness or thorn was a gift from God. A gift that allowed Paul to experience God’s grace, presence, and power in ways he would have never experienced otherwise. The idea that we need to experience sickness to experience these things has never sat well with me.
ALS - is a progressive incurable neurodegenerative disease that has no cure
Now, let me be perfectly clear. I'm not going to doubt any one verse written in the Holy Bible. I'm already fearful of lightning strikes without laying out any doubts. As a young man attending Sunday School, I was brought up obeying and living by the 10 Commandments. Most Christian Bible scholars believe that to understand the Old Testament you must believe in the New Testament. I understand the reason and the parallels of the two, but the 10 Commandments, if followed religiously, could guide each of us in daily life. Why did it have to get so confusing? Heaven sounds like the ultimate answer, but I'm looking for real spirituality for the here and now, to touch and feel right here on earth. I'm not looking for a better place after I die, I'm looking for that better place to reside in me now. I have ALS.

Within the last decade the terms "spirituality" and "religion" have begun acquiring new and different meanings. The National Institute of Healthcare Research has defined spirituality as "the feelings, thoughts, experiences and behaviors that arise from a search for religiousness." Spirituality contains elements of any community and can arise from experiences with people around you and your relation with them. This explains support groups for every disease and alcoholic anonymous groups where everyday people reflect and express problems. The spiritual life tries to impose a sense of purpose on the unpredictableness and seemingly randomness of life. The meaning of life deals with life purpose, inner peace, and the place of the person in the universe. The spiritual life also overlaps the emotional, mental, physical and social aspects of living. Could it be the remedy for anger, fear, anxiety, and pessimism? In small ways, aside from rituals or communal memberships, we are able to find comfort in one's shortcomings.

Eventually patients are unable to walk, get out of bed, or use their arms

It took a warm Saturday morning, five adults and three children for me to see this. It was a day my wife and I allowed a group of volunteers to trim bushes that were out of control. It was hard for me to accept the fact that these people, on their day off were willing to work through the morning for us. One of the crew approached with his hand stretched way out revealing fresh scratches from a thorn bush. He wanted to thank me for allowing him the opportunity to invade our space and that he was the one gaining the largest reward from this project. Through this strange act of kindness I noticed that in ALS's weakness I had strength. Basically, I was the one receiving the service and they were the ones receiving the reward. It took this small event for me to understand that the sufferings that might come our way may have come so that we could see ourselves as we really are and be made spiritually stronger for it.

Yes, this was the beginning of my journey, the creation of my own form of spirituality.
I’m very anxious for my next experience and have learned that no matter how deeply burrowed thorns are, they are power perfected in weakness.

Most patients will die from respiratory failure within five years of diagnosis

I confess, I know more about ALS than I do salvation. That minister I mentioned was my father. Yes, a brave man who challenged ALS for 10 years, kept the faith and died with grace and dignity.

that was a powerful introduction J.M.C....let me welcome you to Neuro Talk. Have you read The Shack? I've read it several times and always get something new out of it. I wish you didn't belong to this awful ALS club.

We recently lost a beloved member BobbyB to ALS..he was such an inspiration to us all. I hope you'll continue to post here...we all need inspiration.

I don't have ALS.....I have MS.....but that was a powerful and beautiful post. I'd like to welcome you to NeuroTalk. I sincerely hope you post more.

I followed Bobby everywhere, you could not avoid him. One powerful smile of Inspiration.

Writing pulls real emotion from me, but then it's not for me. Thanks

Your thoughts on the power of letting others help you were so true. I also have ALS. It's important to note that pALS (people with ALS) do NOT have to die of respiratory failure any more. We can live long full lives by venting and traching.

It's really important that pALS and non-pALS understand that a diagnosis of ALS is not always a death sentence. Many of us live long lives and as more pALS decide to use modern technologies for a longer life, the more pALS there will be - and the greater our power to influence pharmacuetical companies to work on a cure.

We need to change the dialogue about ALS so more of us survive. As you've come to realize, death is a head game. You can accept it and go quietly or you can fight it. Not all warriors will return from battle but we will conquer ALS eventually.

thanks again for your great post,

blue skies

JMC - I do not have ALS, but syringomyelia and possible ms.

I think one thing that puts it into perspective for me - the neck injury, the spinal cyst, my limitations - is seeing the character it takes to deal with something like what you have to deal with. Makes my challenge seem do-able.

My diagnoses put me in a tail spin - I think everybody here gets that, not feeling well and only wanting to do whatever to get better, get back to life. And finding out that is not going to happen, and maybe it is only going to progress....

Scary, frustrating.

But I felt then - and still do - that everything is for a reason. I once worked in a home for people with mental retardation. Now I see that was not a random thing, not just some job. I understand that it was an opportunity for me. Those people did not deserve their disability. They did no sin that they should be punished in such a way.

So many horrible people walk around healthy. So many infants are born ill.

It's not for me to know why, to know what the big idea is. But I trust that there is a plan, a big idea.

Each of us is one tiny brush stroke of a huge and wonderful painting. No way any of us can see what the scene is supposed to be but each of us is just as important to the finished project, exactly as we are. There are no mistakes. It will all unfold exactly as it needs to.

Even the crummy things are part of the plan. My first grandchild was miscarried, but my granddaughter would not have been born otherwise. Had I not been sick and unable to work, I would not have been here to watch her when her mother ran off on her. It was tough, but precious time for the two of us.

I am not mad at God, but I do wonder what I'm supposed to do with my life. I'm only human, and I feel sorry for myself sometimes. But I pray for others more than myself - when I do pray for me, I pray for strength.

I believe that nobody goes until they're done here - even tiny babies, they came and did what they were meant to do, sad as that seems to us. We all have a job, and whether we know what it is or not, we fulfill our obligations before we depart. I also feel that we are never really gone. The body dies, but the spirit lives on.

Not a real religious person, but more spiritual I suppose. And I figure spirituality should be something that brings comfort, not guilt.

It's not about *Will I go to Heaven?* But how cool am I right now? Is the pain tolerable? Is there a roof over head, food to eat, warm or cool enough? Okay, there's a dog to pet and a tv to watch too, so i'm better than 97% of the planet.



Amazingly, at my worst if I really needed to know it was going to be okay there would always be some kind of sign. Maybe not Jesus's face on a waffle, but something, a dragonfly landing on my shoulder, a special song on the radio, something like that.

Maybe because my Dad was passed away when I was doing Catechism, I took the whole *Our Father* thing in a whole different way. I had to think of Him as really being loving - how much did your father love you? How far would he go to protect and help you? Now, how would that be if your real dad was God? Think about that.

Like I said, comfort, not guilt.

HE loves you, like your dad, and similarly is doing and will do what is best for you. Might not seem that way right now, but still.

Maybe when you read the Bible, focus on what Jesus actually said and did, not what everybody else said or did. He was all about lifting you up, helping out, not about telling you how wrong or bad you were and what not to do.

Thank you for your comments and I appreciate your thoughts. I wrote this article because I had a spiritual moment that was not affiliated with any religious group. Religious groups, similar to political groups, sometimes seem to be on the cliquish side. Spirituality resides in all of us. We also have the instinct to bring it out of its dormant state. Try talking to your God any way you like and watch the aura that will be seen by others no matter your physical condition.

I read your post the other day and its contents have stayed with me for quite a while. Your openness, honesty and straight forwardness is greatly appreciated, things very difficult to write about. I do see some similarities, some differences but thank you for writing.

I have been a church organist/pianist for over 30 years and have witnessed quite a bit in those years. The things I have seen have been the most evil of things I have ever witnessed. I was recently diagnosed with Chiari malformation, a birth defect as I term it, which affects the cerebellum area of the brain responsible for coordination, balance issues. One Sunday morning on my way to the organ, was hugging the wall as I tried to walk. A church member witnessed my stumbling and asked me “Don’t you think it is a bit early to be drinking?” Gave up drinking some 15 years earlier, but learned that one needs to have all the facts before opening the mouth.

Later I worked at a governing body of the Presbyterian church, the denomination in which I was raised. There I was accused of lying, cheating, stealing, misrepresenting the truth, the facts and a host of other things. This whole event in my life could easily take up a chapter or two in a book. All of the accusations were unfounded but had to deal with them. And the majority of accusations came from many of the 230 ministers I had to work with. In retrospect there were about 5 ministers who I think were what they claimed to be, ministers of the Word and Truth.

I have also learned that the church is not the place we believe, think, or taught it is. People that attend church, for the most part, work all week under strict behavioral rules and regulations to produce for their employer. Then they attend church where the restrictions are lifted and these folks, for the most part, think that they can do, say, anything on their mind, the weekly restrictions are lifted here, so have had to deal with those issues. Being a PK, you may know of this.

Needless to say, with so many things I have witnessed, I questioned my approach to God, how am I supposed to do this? God has taught me one thing; it is OK to approach Him in the most comfortable way for us to achieve this. Theologians, church gurus and others have made our paths to God difficult with their church tenants, thoughts, beliefs, denominational structures. The path to God is easy and simple, to love Him as He loves us, unconditionally.

And I have questioned the “whys”. Several years ago I played organ for a service to the Witness of Resurrection, (a funeral) when a mother and father were burying another child of theirs lost to death. The mother approached me after the service and claimed, this is not how it is supposed to happen, I should be going first, not them. She continued by saying that when the day comes and she stands before God, she will tell Him to sit down and talk to her, because she will have a hell of a lot of questions and expects the answers. But the “whys” I have placed into a mental file labeled “Mysteries of Life” and try my best to not go there. These answers will not come in our lifetime.

I read recently that we all have been dealt a hand of cards called life. We should not expend our energies on questioning this or that card, but should be working on how to play the hand given to us. I have no control over yesterday, have very little control over tomorrow, but I can do a lot about right now, the present. And this is the place where I try to live, right now.

Peace, be yours as you continue on your journey. You have touched so many and will continue to speak to many more.

David

I appreciate each and every reply in this thread. With every life treating illness or health crisis we find ourselves at a crossroads. We then have three new routes to choose from and timing of those choices may be limited. It is my intent to show that spirituality resides in us all and may be one of those routes we choose to see us through. For those with disabilities and limitations, spirituality may be as close as the multiple songs of God's Mockingbird. Spirituality could be our beginner steps towards religion.

Oh God, how can we know you? Where can we find you? You are as close to us as breathing, yet you are farther than the farthest star. You are as mysterious as the vast solitude of night, yet as familiar to us as the light of the sun. Where can we find you?