Monthly Archives: August 2014

Ice Bucket Challenge

August 19, 2014, by Todd Neva

Isaac Neva taking ALS Ice Bucket Challenge for Daddy

Isaac Neva taking ALS Ice Bucket Challenge for Daddy

“What happened to you?”

I’ve been asked that question, or some variation of it, many times by people I meet.

“I got sick,” I would answer. “I have a neurological disease. It’s a brain disease, called ALS.”

If my new friend is older, I tell him I have Lou Gehrig’s disease. Older folks know that disease, heard of the man, the baseball legend Lou Gehrig, and how he died.

But I wouldn’t call it Lou Gehrig’s disease if my new friend is younger than, say, 50.

“ALS stands for amyotrophic lateral sclerosis,” I explain. “Amyotrophic is Greek for no-muscle-nourishment. Every voluntary muscle in my body will weaken, and I will become completely paralyzed, even losing my ability to swallow and breathe.”

“Oh! How do they treat that?”

“They don’t. There’s no known cause, no cure.”

“Oh!” His eyes widen, suddenly realizing the significance of this disease that has put me in a wheelchair, robbed me of my independence, took everything from me but the love and support of my family and friends.

“But life is good,” I ease the tension. “Not everybody gets to retire at age 41.”

For conversations like those, I am glad to see the ALS Ice Bucket Challenge.

The ALS Ice Bucket Challenge is raising awareness of this orphan disease, this devastating disease that cuts down a small percentage of people,* but does so cruelly and quickly, usually within two to five years.

The disease impacts each pALS, person with ALS, differently. For some the disease starts in the arms, then moves to the legs, then to the bulbar, which are the muscles in the core of the body controlling breathing , swallowing, and speech. For others, the disease starts in the legs, then moves to the arms, then to the bulbar. For some the disease shows up first in bulbar, slurring speech and sometimes leading to an initial misdiagnoses of stroke.

However it starts, every pALS has to deal with change. The toughest challenge for me has been change. At any given point, I think to myself, “If it would just stop now, I could deal with it.” But it doesn’t stop. This disease, ALS, is relentless, robbing me of independence month after month. I vividly remember the first time I couldn’t swing a golf club. “It’s okay, I thought, I can do without golf.” As clearly as I remember where I was when I saw the twin towers collapse, I can picture myself sitting at the kitchen table when I was first unable to squeeze a mustard bottle. “It’s okay,” I thought, “my wife can put mustard on my hamburger.” There were more setbacks, month after month, each devastating: unable to comb my hair, unable to button my shirt, unable to pull on my cowboy boots, unable to drive, unable to bathe myself, unable to lift a glass to my mouth, etc. I have very limited use of my hands. I struggle to walk. I fall occasionally. I sleep a lot. I require a personal caregiver for the most basic tasks. But even now, I think, “If it would just stop, I could deal with it.” But it doesn’t stop. ALS is relentless.

The ALS Ice Bucket Challenge is raising money for a worthy organization. The ALS Association announced on Monday, August 18, that it has received $15.6 million in donations compared to $1.8 million during the same time period the year before.

ALSA provides practical support for pALS and their caregivers, such as adaptive equipment, support groups, social service guidance, and financial assistance to help with medical expenses. I have benefited personally from the organization, and I’m very grateful for them.

ALSA also provides grants for medical research. This is a wonderful time to be funding ALS research because recent discoveries have given valuable insight into the mechanism of the disease. There are a few medical trials, which are in progress now, that are looking promising.

So whether someone chooses to just dump the ice water over themselves, to just donate, or both, it’s all good. Thank you! People are becoming aware of this disease, the money is flowing to the ALSA, and we’re all getting a good laugh in the meantime.

 

* Less than 2 in 100,000 people are diagnosed with ALS each year in the United States. About 30,000 people are living with ALS in the United States at any given time.

Caught off Guard

August 14, 2014, by Todd Neva

Source: lightstock.com Image subject to copyright restrictions.

Source: lightstock.com Image subject to copyright restrictions.

Caught off guard, I wasn’t prepared for the question.

He asked, “In reading Heavy, I can tell that you’re happy. How did you come to have such a positive attitude?”

I knew the “correct” answer. I was speaking to a representative of a Christian media organization, so I should say, “I recognized God’s sovereignty, put my faith in Jesus, and found joy.”

That is what I did not say.

I couldn’t say it, because it wasn’t true.

Yes, I recognize God’s sovereignty. Yes, my faith is in Jesus Christ. Yes, I find joy in that. But that is not why I am happy.

I answered instead, “God has given me the gift of a positive disposition. I had it before I was diagnosed with ALS, and I had it after I knew I was going to become completely paralyzed and die, likely within five years.”

Sure, there was grief, plenty of grief. But I eventually came out of it. It helped for me to gain perspective when I heard that my friend’s eight-year-old daughter had heart failure and needed a transplant.

“But,” I added, “everybody grieves differently. Some people grieve so deeply that they don’t want to go on with life. It pains me when I hear stories like a young man who was diagnosed with ALS and retired to the couch with a bag of Oreo cookies and ate himself to advanced weakness. But I won’t judge him. I am not going to tell anybody how he should feel. I would encourage him to know that there is value in a disabled life. I would let him know that there can be purpose in life, even with severe limitations. I would comfort him.”

Well, that’s what I remember saying.

In truth, it probably sounded more like, “I don’t know, um, mumbled bumble, lucky me, I happen to be happy. Others aren’t, that sucks.”

It really does suck.

Excuse my French.

Like many, I took notice of Robin Williams’ death. It sounded like another tragic celebrity death, but then I read today a statement by his wife. He had recently been diagnosed with Parkinson’s disease.

“Robin’s sobriety was intact and he was brave as he struggled with his own battles of depression, anxiety as well as early stages of Parkinson’s disease, which he was not yet ready to share publicly.”

I am disturbed by his depression — particularly when juxtaposed to his ability to make people laugh — but saddened personally to think that a neurological disease was a contributing factor.

People look to me for encouragement. That’s fine. But know that I do not have any magic formula. I have a relationship with Christ, yes, but so do many who are depressed nonetheless.

Having a relationship with Jesus Christ does not guarantee that you will be happy, wealthy, pretty, or any-other-y. It means that you have a personal relationship with God, by whom you can cry, “Abba, Father!”

He is the God of comfort. He promises that he will be with us, but he does not promise that the troubles in this earthly life will be gone, not even mental illness such as depression.

But there will be, someday, for those who trust in Jesus Christ the Son of God, the redemption of our bodies.

Paul wrote to the Christians in Rome, “The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him. For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us… We ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies.” (Excerpt from Romans 8, ESV)

What do we wait for? What is the redemption of our bodies?

Philippians 3:20-21 “But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself.”

1 Corinthians 15:52 “in a moment, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, and the dead will be raised imperishable, and we shall be changed.”

Revelation 21:4 “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

We wait for the second coming of Christ. We wait for heaven.