Putting a face to the Ice Bucket Challenge

Bucket © Anthony Quintano used under Creative Commons license

Rarely do I use this blog for personal issues but today I want to share with all of you from my heart. You see all of these Ice Bucket Challenges have affected me deeply. Let me tell you why something as simple and funny as someone dumping a bucket of ice over his or her own head sent me into an emotional tailspin.

SueI want to put a name to ALS. Her name was Sue and she was my younger sister. ALS took her life in October of 2009. And I still miss her every single day.

ALS (amytrophic lateral sclerosis) or better known as Lou Gehrig’s disease is a debilitating disease. ALS is a disease of the nerve cells in the brain. Once it attacks a certain part of the body it paralyzes it. It slowly takes away the person’s body while leaving their mind intact.  Eventually the person is trapped in their own body, unable to move and unable to communicate.  It must be misery for them, and it is painful for those who love them.

In February of 2008 I got a call from my sister. She was slurring her words and said her right hand and arm were tingling. My son in-law is a physical therapist so I handed him the phone. He put her through a series of test over the phone and told her to go to the hospital immediately because he thought she might be having a stroke.

She hadn’t had a stroke but the doctors weren’t sure what the problem was. She went through a series of test with a neurologist. She got several “possible” diagnoses. There was no specific test that could diagnose ALS. It was a process of elimination.

In the mean time her slurring got worse to the point we couldn’t understand her. Her right arm got weaker. Her right hand and shoulder began to be affected. In August she got the diagnosis of ALS. She knew that ALS was a death sentence. No one recovered from ALS. At that time there was only one medication and all it did was prolong the patient’s life. She told me if everything they had told her about ALS and what was going to be happening to her body was true she didn’t think she wanted her life prolonged.

She was a champion and had the most incredible attitude throughout the entire illness. In August 2008 she sent out an email where she informed her family and friends about the diagnosis. At the end of that email she listed what she called the Best News.

BEST News:  I still have family and friends who care about me so I know I don’t have to  go through this alone. I know I have the thoughts and prayers of a lot of people.  And I know that when this soul leaves this body, I will be spending eternity in the presence of the Lord!!  Who could ask for anything more?  Am I lucky or what?!?!

Over the next year ALS continued to wreck havoc on her body. In October 2008 I went to see her. At that time she had already lost her ability to swallow, talk and use her right hand. The doctors had inserted a feeding tube. Without the feeding tube she would have choked to death.

She met me at the airport with her “talking machine”. She was beginning to drag her right leg a bit. Like sisters do we shared some deep thoughts. One thing she told me that I will never forget and that was, “You know all my life God has been trying to get my attention. I have pretty much ignored Him. Well, guess what? He now has my full attention.” She wasn’t bitter or angry. I so much admired her spunk.

In January she spent me the following email:

Pray for me RIGHT NOW. I am having a meltdown. I went outside and went down the steps to the backyard to pick up the dogs’ ball. I picked up, turned around, stepped up on the first step and fell. I landed on my tailbone and then fell back and slammed the back of my head on the ground. Don’t worry, I’m not hurt, but this is the third time I have fallen in the past four weeks. And I guess it just hit me how much everything has changed and how much more is going to. I can no longer sing or talk or swallow. My right arm/hand are almost completely useless. I DON’T WANT TO BE LIKE THIS!!!!

I fell about a half hour ago and after I managed to get myself upright (which took about 10 minutes) I came in the house, sat down and cried. I don’t want to cry – I want to stay positive and upbeat. I want to be a better witness.  So pray that I will not wallow around in self-pity, but be grateful what I have and what the Lord is doing for and through me.

Thanks for being here for me – just writing to you and knowing that you are praying for me is helping. At least I have quit crying.

Over the next several months she lost the use of her right leg; then her left arm and all of her fingers except the middle finger on her left hand. She used that middle knuckle to type. She would say, “Type with you later” with her talking machine. In June she got a wheel chair and joked about outfitting it so she could she could zoom through town in her wheel chair.

Eventually she lost the ability to walk and at the end of her life she could only communicate by blinking her eyes at a computer screen.

The night before my sister passed away the Lord blessed me. God placed her on my mind so heavily all that day. On that night the last thing I prayed for was that the Lord would allow Sue to go to sleep and not wake. I did not sleep well.  Every time I woke I would pray intensely for her. Finally around 3:00 in the morning I went sound to sleep until the phone rang at 6:00. I didn’t have to answer the phone to know she was gone. I already knew. At the exact time I went sound to sleep was when my brother in-law found her.

I love that the Lord allowed me those intense prayer times and even though I wasn’t there physically, my spirit was with her. I was allowed to be the big sister that walked her through the valley of the shadow of death and into heaven.

I am glad a lot of attention has come to enlighten people about ALS. If you still do the challenge or the kids in your ministry are doing it, please don’t just do the challenge without prayer. Pray for all ALS patients and their families. Minister to these families.

Pray that money will go to the ALS patient and their families to cover the cost of equipment such as wheel chairs, “talking machines” and or communicators to help them stay in touch with loved ones. Pray that funds will go to some of the charities that provide end of life support such as Hospice. Pray for research to find a cure or in the least medications to slow the process.

There is a legitimate controversy over the embryonic stem cell research. I’m not going to get into a debate about research. What I am posting about is the call to bring attention to this insidious disease and to bring the challenge to minister to families and individuals with this horrific disease.

In honor of Sue Antle Wathen thank you for bringing attention to this horrific disease.

4 thoughts on “Putting a face to the Ice Bucket Challenge

  1. Thank you so much Linda for posting this information. I pray many people will do as you have requested and provide monies for helping with financial issues.

  2. Linda,

    I remember walking through those days with you. I saw what a tole ALS took on you, your sister, as you watched Sue go through those terrible days. Yes, you shared her emails with me and I could not believe what a great attitude she had even though she knew her time was limited.

    I know you still miss her terribly. Thank you for sharing your story of how this terrible disease took your sister. My prayers are with you as you continue to walk in the light of Jesus and cherish those fond memories of your sister’s love.

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