I have mentioned several times my good friend Patrick who died from ALS about a year and a half ago. Patrick was one of my closest ministry friends, and I grew up with his wife, Dena. Dena recently posted on her blog a reflection on what her life has been like for the last 20 months, along with her thoughts on the Ice Bucket Challenge. I really think it is worth reading. You can read the blog post in its original form HERE or just read it below.
Reflections on 20 Months & Ice Buckets
Today marks the 20th month since Patrick’s death. Most people begin rounding up at this point, but I find myself still looking at that 26th day every month and knowing full well which number is coming next. While I have stopped counting every Wednesday as weeks, my heart cannot yet start to speak in terms of annual or biannually. I can’t “round-up” when I am still trudging through this valley of the shadow of death, one painful step at a time. Life without Patrick continues to be an effort, daily moving forward by God’s grace and sheer will, but certainly not “moving on.” There is barely an hour that goes by that I have not either spoken about Patrick or thought about him. He is still a vital part of my life.
This month as the calendar approached the 26th, I found myself taken completely by surprise by the onset of the viral phenomenon, known as the “Ice Bucket Challenge.” A couple of weeks ago, someone brought it to my attention and my first reaction was not real positive. After briefly looking online for the history of it (which even that has been questioned), I then determined to just ignore it. I have been pretty good about ignoring most news and politics for the last 2 years, which may surprise many of you since I used to be a “news junkie.” However, I soon realized that this could not be ignored as more and more friends, family and co-workers took part and many were doing so in honor of Patrick. Even Paige and Parker made the decision to participate.
Although I knew there were many messages being sent to me via Facebook, I will admit that I stayed off social media for over a week because I just couldn’t “go there” every night and watch and hear stories about ALS and Patrick. It takes a lot of emotional energy and I need to take things like this in small segments of time. Being in the right frame of mind is essential.
So this past weekend, I did catch up and watch the videos and messages that I had been tagged in. I also took some time to read a few more articles about it. There is a lot of information out there. Many articles promoting it and many against it and I found some truth in every article I read. As with any subject, every author comes from a different angle and has some point (or agenda) they want to highlight. In addition, I had a few messages asking me if I know anything about which organization uses stem cells for research and which ones do not. The truth is that I have not made the disease of ALS my focus, so I don’t have a lot of those answers.
Rather than debate any one of the pros and cons of whether this video challenge is trivializing something that’s very painful for those with a family member suffering with ALS or whether it’s a great marketing tactic, I’d prefer to just share some random thoughts that are important to me after losing my husband to this awful disease.
- Amyotrophic lateral sclerosis – Learn how to pronounce it and be able to describe it.
- It is a neurological disease. The brain’s messages stop getting to the muscles so they stop working. Most other countries call it Motor Neuron Disease (MND).
- It’s like becoming paralyzed in your own body. Thus the ice in the challenge was meant to feel like the numbness an ALS patient feels.
- Anyone can get ALS, regardless of gender or age.
- It is fatal – a death sentence. No cure. Only meds to treat the symptoms.
- Most die in less than 5 years. Patrick died 12 months after diagnosis and he was only aware of his symptoms a few months prior to that.
- Of all the muscles to lose, I believe the worst is losing the ability to talk and chew. Eight out of 10 ALS patients lose the ability to speak.
- This is not a painless disease. It is cruel and causes not only physical pain, but also extreme emotional pain.
- ALS does not affect the mental capacity. ALS patients know exactly what is happening to them and around them.
About the Ice Bucket Challenge:
- Regardless of how it started, it has indeed raised an unprecedented amount of money for ALS research.
- In spite of taking thousands of lives each year for over 70 years, ALS has been relatively unknown and grossly underfunded.
- Research is needed for this disease and research does cost money. Lots of money.
- As with any organization to which you would consider donating money, you should thoroughly research how the money is spent.
- I do not endorse nor promote any certain ALS organization because honestly I have not had the time, energy or desire to thoroughly search them out yet myself. (Here is what a friend of mine has recently discovered).
- I am not keeping track of who does this challenge and/or who promises to donate. I know all of you who have stood by Patrick before he died and continue to stand by the kids and I since his death. No one has anything to prove to our family. We love you and are grateful whether you dump ice on your heads or not.
- However, if you have felt led to participate, I am touched by your comments about Patrick and your memories of him. It does encourage me and mean a lot to hear you talk about him.
Ways to help someone with ALS:
- Pray for them, specifically asking for grace and endurance.
- Support the family in any way possible. If you are not close to the family, ask someone else who is what you can do. Don’t ask the family themselves – just find something to do and do it. Sometimes there really is nothing to do but pray.
- When you see the person with ALS, look them in the eye and talk to them normally. Do not talk about them to their caregiver. They are still the same person they were before. They may not be able to answer in the same way, but they need to know you realize they are who they used to be.
- Be patient and don’t ask the family for updates all the time. This disease can’t be predicted to follow any certain path. If something major changes, you will find out. Otherwise, it’s just a daily decline and the family is trying to enjoy the good moments, not guess what is going to happen next.
What Patrick would have thought about all this:
- He would want people to understand the disease.
- He would be ok with money given to research; after all he chose to donate his body for ALS research. It was his final wish and one that I spent hours and days on the phone getting set up, all the while sitting next to him in his chair as he nodded and told me to not give up. (Yes, he was still delegating even without his speech!)
- He would have had fun with this challenge and done it himself, if possible.
- He would have laughed at the good times and creative ways many of you have come up with.
However….here’s what Patrick would have said about all this:
- As important as research for ALS is, there is something more important. He mentioned back in his blog on January 8, 2012 that his biggest problem was not his fatal disease. It was his need for a Savior.
- Regardless of whether it’s a disease or a car accident, all of us WILL die eventually. Therefore, considering eternity is of the utmost importance.
- Jesus Christ is God’s gift to us and according to the Bible is our only way to Heaven (John 14:6).
- We can have a personal relationship with Jesus which will answer our biggest problem (of sin) for eternity and that same relationship gives us a hope and a reason to live here on earth now.
- Patrick preached his last sermon (after his speech was already greatly diminished) explaining the two choices each person must make: to live either God’s way or man’s way. He shared his personal story of how God came into His life and turned it around when he was a teen. From that point on, Patrick dedicated his life to telling others about Jesus. At his Celebration of Life service (aka funeral) that he planned in advance, he wanted the Gospel preached and for all of us to worship together, knowing that we have an eternal hope.
- Finally, I know that Patrick would share with others that giving finances to any church, mission or organization that promotes the Gospel is ultimately the best and safest investment because it’s the only one that answers our greatest need.
I have no idea why God has brought ALS to the world’s attention, 20 months after He took my husband to his eternal home by way of this awful disease. However, I don’t believe in coincidences. This isn’t about Patrick and it’s not about this particular disease either. There are many awful forms of cancer, incurable infections and even “freak accidents” that take peoples’ lives every hour. I am reminded that death and disease are a result of the broken, shattered world we live in because of the effects of sin. We are always shocked at death. We hate it because it’s not natural. But Jesus did not come to give us “our best life now.” He told us that “in this world we would have trouble, but to not despair because He has overcome the world” (John 16:33).
We are to expect trials and tribulations. This truth, however, is contrary to our culture’s way of thinking that we are to have maximum pleasure and minimum pain. Truthfully nothing in this world will ever bring ultimate satisfaction, no matter how hard we try to fill the void. Nothing, that is, outside of God and my personal relationship with His Son, Jesus.
Do I hope that a cure is discovered for ALS? Absolutely. Do I think awareness and fundraisers are helping? For sure. Is there something I care about more? Definitely. It’s actually someone: Jesus Christ. One day in Heaven, all those who are His followers will live without pain, disease, sin and death (Revelation 21).
Patrick’s story….. my story…. and your story…. They are just tiny parts of the whole picture of God’s kingdom. That is the Kingdom in which I place my hope… for it is the only Kingdom that cannot be shaken. Therefore I will offer God acceptable worship with reverence and awe (Hebrews 12:28).
“Come to me, all you who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.” Matthew 11:28-30