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Leon

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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 strange 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 his faith and died with grace and dignity.

Leon Peek
 

hopingforcure

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Just one of the most profound and amazing things I have ever read. I am honored that you shared this story with us, it is absolutely moving. I am going to share it with my husband, I hope we hear so much more from you Leon.. Thank you for this thoughtful sharing of information.
 

sophiaa

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Leon,
That is the most moving story I have ever read. I have printed it to read over and over again. You have given me a different outlook on things---thank you so much for posting this!
Sophiaa
 

olly

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hi leon, fantastic post.
as a fellow christian and deep thinker i ofton feel the same as you.

god does not want any of us to suffer or cause such suffering,its mans imperfections that are to blame.
but he promises in due time he will reverse imperfections,doing away with sickness and death. we just have to have faith and be patient.

as for apostle paul,its thought his thorn was his eyes,i ofton wonder if it was from when he was blinded by the angel(when he was named saul and persicuted the christians)
maybe it was there to serve as a reminder of his past ,but it made him a better person.

as capt al once said,we can look and find many things to be thankfull for like creation and family ect.............all good gifts from god to help us bare what lifes imperfections may throw at us.
godbless:)
 

Marjorie R. Wilcox

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Hi Leon, your post is obviously heart felt and it touched my heart too.
I just want to make a couple comments... thoughts, if I may... not exactly corrections... but just sharing what I have been taught.
The 10 commandments are under the law, and shows our need of a Savior, as we cannot possibly keep them. Under the law, sacrifices were given for atonement. Christ is our only Redeemer in this age called Grace.
We are not immuned from diseases by living well or being good or obeying the law. The idea, why me, is counteracted by why not me? Our attitudes and motives and what we put our trust in is where it's at. Original sin in the Garden began the hardship of disease and all thorns.
Our lives here are way too short, even if we make the 70 years estimated in Bible. Eternity makes life here seen like nothing. Since there is no sorrow there, and so much contention and disease here, let's reach for there. God bless you in your journey.
 

northerngirl

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Leon,
That was truly wonderful. Thank you for sharing.
 

MtPockets

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Why?

Leon, that was beautiful. Thank you for sharing what so many of us have also thought.

Here are just a few of my thoughts as I too have gone down this road less traveled.
I consider the bible to be the manufactures handbook on Gods creation. Just as we would look up how to take care of a car we bought, by reading the manufactures handbook, I believe there is an answer in the bible for everything I need now or may ever need, IF, I just look for it.
I have been a Christian since March 23, 1972 at 7:15 pm.
How can I be so sure? Because I followed what Jesus told me in His word, accepted it, believed it, asked for it, and received it. Case closed, it is finished.
How can I be so sure? FAITH. By faith in God, Jesus, and His word, I accepted the price He paid for my sins and asked that they be forgiven. I invited Him to come into my life, and He did. I have to walk and live that faith every day.
Since that time I have been attacked for my beliefs, or had my faith tested and tried if you prefer, by all kinds of different ways.
I've been told in a church at the altar for prayer, I am sick because I do not have enough faith to believe God to heal me. Do I believe God still heals people today? Absolutely.
I have witnessed it myself many times. I stood in front of a woman who was blind in one eye and saw her sight restored instantly. Yes, God heals.
Why have we not been healed?
Sounds like a question one of Jobs friends may have asked. I do not understand why, how, when, where God does what He does. This does not make me doubt that He is still God.
FAITH.
My faith is not based on God answering every prayer I ever pray, when I pray it. He is God not me. I rest in His love for me. I know He hears and cares, the rest is by faith.
Job 2:
7 So Satan went out from the presence of the LORD, and struck Job with painful boils from the sole of his foot to the crown of his head.
8 And he took for himself a potsherd with which to scrape himself while he sat in the midst of the ashes.
9 Then his wife said to him, “Do you still hold fast to your integrity? Curse God and die!”
10 But he said to her, “You speak as one of the foolish women speaks. Shall we indeed accept good from God, and shall we not accept adversity?” In all this Job did not sin with his lips.
The trials and testing of Jobs faith are examples of how we react when bad things happen in our lives. Do we get mad at God? Jobs wife wanted him to curse God, give up, and die?
Is our life, our happiness, our attitude based only on how we are doing physically, financially, emotionally, etc? How sad that we would have such a shallow existence. Think about it for a moment.
Romans 8:
35 Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?
36 As it is written, For thy sake we are killed all the day long; we are accounted as sheep for the slaughter.
37 Nay, in all these things we are more than conquerors through him that loved us.
38 For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,
39 Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

The big question for each and everyone of us finally comes down to this, Why are you here in this life?
I believe, we are being tested to see if we are faithful, during the good as well as the bad times. To see if we accept and believe God. A test, for lack of a better way of putting it, to see if we are going to heaven or hell.
I know I am not through with my testing yet. There have been tests that I have failed and I have had to ask for God to forgive me. That is what the process is all about, building our relationship with God the Father, Son and Holy Spirit.
God has prepared a place for us, but are we a prepared people?
Jesus said,
John 14
1 Let not your heart be troubled: ye believe in God, believe also in me.
2 In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you.
3 and if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
4 and whither I go ye know, and the way ye know.
5 Thomas saith unto him, Lord, we know not whither thou goest; and how can we know the way?
6 Jesus saith unto him, I am the way, the truth, and the life: no man cometh unto the Father, but by me.
2 Timothy 4
1 I charge thee therefore before God, and the Lord Jesus Christ, who shall judge the quick and the dead at his appearing and his kingdom;
2 Preach the word; be instant in season, out of season; reprove, rebuke, exhort with all long suffering and doctrine.
3 For the time will come when they will not endure sound doctrine; but after their own lusts shall they heap to themselves teachers, having itching ears;
4 And they shall turn away their ears from the truth, and shall be turned unto fables.
5 But watch thou in all things, endure afflictions, do the work of an evangelist, make full proof of thy ministry.
6 For I am now ready to be offered, and the time of my departure is at hand.
7 I have fought a good fight, I have finished my course, I have kept the faith:
8 Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me at that day: and not to me only, but unto all them also that love his appearing.
AMEN
 
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joelc

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AMEN! I could not have said it better!
 

Leon

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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?

Leon
 

QsMom

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Thank You

Hi Leon:

I can't thank you enough for your post. My mother's diagnosis was just confirmed and I have found myself with all of the questions and anger you addressed. I have even gone as far to admit "out loud" that I am ANGRY with God.

I am very upset about the inevitable loss of my mom, but have also had a very tumultous year. Eleven months ago, I gave birth to my first son; I am 33 years old and wanted to wait until I was "ready" to begin having children. Five weeks after the birth of my son, my fiance's father died; I had no idea how to comfort him and hated seeing him in so much pain. Ironically, my dad was scheduled to come to Florida (he lived in KY) to help me with my newborn and see his grandson however, when my dad arrived, I knew something wasn't right. After a few days, I became concerned and took him to my family doctor; my dad was diagnosed with Dementia. I couldn't believe that it had come on so fast, I had just visited my dad in KY 3 months prior and there were absolutely no warning signs. I went through many months of trying to arrange his care but finally realized that he needed to be in a nursing home. I put him in the home in February and he passed on April 27th; I have never experienced this feeling of loss and sadness and am still trying to figure out to cope without him.

Now, as me and my family face the journey ahead of us with my mom, I look back on everything that has happened and all of my anger and I realize, all of my anger is focusing on selfish feelings and reasoning; I am angry that "my" dad is gone, that "my" mom is sick, that the first year of "my" son's birth has been overshadowed by so much pain and sorrow. I have to admit, all of this anger is beginning to take it's toll on me. My alcohol consumption has increased dramatically, my relationship with my fiance is definitely suffering, and I find myself sad and mad all the time.

In some odd way, your post comforted me, gave me hope, and changed my perspective. I am grateful that other people experience some of the same feelings that I am; this reminds me that I am human and have limitations. I also realized that while a lot of bad things have happened lately, there has been a lot of good that I have been ignoring such as the HEALTHY birth of my son and the complete joy he has brought to my life. I am also thankful that my dad lived an incredible life and died in a very peaceful manner. With my mom, maybe I should be thankful that we have been given this diagnosis now, and still have time to express our love and appreciation to eachother; not many people get that opportunity.

I am not sure if this new outlook will help me get to a point where I have "faith" again. One thing I do know is that my anger is not getting me anywhere and if this shift in my attitude can help me cope; I will embrace it with open arms. This journey may be just the thing that can lead us all to spirituality that we are searching for. Regardless, I was inspired by your post and very thankful that you had the courage to document your thoughts.

Sincerely,

Tanya
 

MtPockets

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Why me, Why now, maybe some helpful answers.

For an encouraging discussion please goto this thread and read as much as you can. It has helped us share our spiritual feeling and to cope better. https://www.alsforums.com/forum/showthread.php?t=4711&highlight=Christians

I know many have seen this before but for those who have not here is what the Docs say we face:
Denial
Bargaining
Anger
Depression, Anxiety, Grief
Acceptance

What you are feeling is not unusual. Just wanted to let you know we have been through what you are going through. There are times when we backup a few steps and start again, it is not unusual.

How do any of us cope? There are several ways depending on your personality and faith. It is never easy. Many do not understand how we feel and react to so many things while going through this.
You are not alone.
We have walked in your shoes, and can tell you there is hope.

One thing that seems to help, is to focus on making memories, good memories one day at a time. Please, do not dwell on what you or your loved one cannot do, but what they can do and do it. Do not sit around in self pity and let the time get away from you and leave so many things undone. No matter how bad you feel, make an effort to make this a good day. If we start each day with the idea, what can I do today that we can enjoy, every day. Soon you will look back and see the wonderful time spent with each others, and the memories that will last a life time. this is not just about you. It effects everyone who knows you and cares about you.

I wish I had a magic pill to make it all go away, or a cure. All I can do is do the best I can with what I have to work with today.
A merry heart does good like a medicine the bible says. We can always look around and see something to be thankful for in our lives.
If nothing else it is we have been given TIME.
Time to make things right with others.
Time to do some things we have always wanted to do but put off.
Time to access our relationship with Father God.
Time to write a Will, or a book.
Time to sit and talk with our loved ones and let them know we love them.
Maybe even time to ask forgiveness.

We are blessed in this one thing that many who die never get the opportunity to do. Please, use this time wisely, and try to remember everyone has to die of something eventually. We have time to prepare at least. I am thankful for that.
 
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