I know I know, everyone is getting sick of these “Ice Bucket” blog posts but I wanted to respond to why I am not participating in this fad even though I was nominated twice. As a Christian and someone who deals with a chronic illness I feel I have a different perspective on this than most people do. Many are willing to jump onto this “ice bucket challenge” with good intentions and I’m not here to criticize them. So, with that said, I am not telling you to stop donating, and I am not saying that the intent behind this challenge was bad. I would say that the goal of raising money for the ALS foundation has had big success, with donations reaching 70 Million so far. So, you may be asking, “What’s the problem then?”.
This blog post is dedicated to Jim Young and Heather Askeland, rest in peace and thank you for sharing your struggles with the world in hopes that the world would listen.
1. A challenge. How is this a challenge? I’m not exactly sure what the creators of this challenge are trying to say.
Is dumping a bucket of ice water on your head a challenge in the same way that ALS is a challenge? Anyone can dump a
bucket of ice water on their heads and donate one dollar to charity, one time, and never do anything charity related again. Ironically, this is supposed to be a challenge? The bible tells us that we shouldn’t get tired of doing good, but also that we should do good when no one is watching so that a person is doing it genuinely from their heart, not for public approval or praise. So naturally I ask you, what do you do with your money when the world isn’t watching you? Do you still help people if you know they are struggling?
If God has placed someone in your life who is really having a rough go with things and you have the financial means to help that person, do you? Whether it’s a single mother, a friend who has high medical costs, or someone who just lost their job… are you helping them? Probably not, but you will give your money to a non-profit organization that raises millions of dollars each year. And of course it helps that people are watching, right?
“When you pray, you are not to be like the hypocrites; for they love to stand and pray in the synagogues and on the street corners so that they may be seen by men. Truly I say to you, they have their reward in full. “But you, when you pray, go into your inner room, close your door and pray to your Father who is in secret, and your Father who sees what is done in secret will reward you.
“And when you are praying, do not use meaningless repetition as the Gentiles do, for they suppose that they will be heard for their many words.” Matt 6:5-6
My point is this, we shouldn’t need an audience to do good, and we shouldn’t think that this one time ‘act’ is a magical remedy for the real and horrific struggles that those with ALS and other neurodegeneritive diseases go through on a daily basis because money is going towards research. May I remind you that research is not a person.
I have been posting my brains out on facebook the last few months because I keep hearing about seriously ill people committing suicide because they could not get help from the medical establishment. They all had severe borrelia infections (often paired with other co-infections) in their body. It is known that an untreated lyme infection (borrelia. burgdorferi or borrelia.myomoti) can lead to neurodegeneritive diseases over a period of time. Yet, lyme sufferers literally get no recognition from the medical community. To the point that disability gets denied, meds aren’t covered and people are too sick to try and work… they loose hope and no one helps. So, naturally, they take their own lives. It’s crazy to me that two diseases such as Lyme and ALS that can have the same cause (Borrelia and other coinfections) get treated completely differently by the medical establishment. One gets completely silenced while the other gets millions of dollars in research oh, and that’s each year. Lyme disease is a worldwide epidemic (according to the CDC) with over 300 000 cases each year in the U.S alone, while the diagnostic range for ALS is around 700. Did you know that we Lyme disease sufferers have the highest rates of suicide? Did you know that doctors lose their licenses for treating lyme? Why? Because the establishment does not want people to get better. If there is no one sick, we won’t need billion dollar fundraiser campaigns or billion dollar pharmaceutical companies.
( I wont get into the biology of the link between lyme and ALS so if you are interested in this you can find publications under my “resources” page. So, I challenge the ALS foundation to actually look at the link between lyme related bacterium and neurodegeneritive disease.)
Jim Young who I mentioned earlier was diagnosed with ALS, he found out later that he had an underlying lyme infection that led to his neurodegenertive disease. Unfortunately, it was too late for him. He recently passed away.
2. As an awareness campaign, I’ve noticed that with the ice bucket challenge, from what I’ve seen, no one actually takes the time to explain what ALS actually is. People “mention” how they were nominated for the ALS challenge, dump the water, and then proceed to nominate others. I feel that if one wants to raise awareness about something, we need to talk about it truthfully. If I were to ask you right now what ALS is, could you tell me about it? Even after watching all these videos of people dumping water on their heads for ALS?
This is from the website: http://www.alsa.org/about-als/what-is-als.html
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
So basically long story short, this affects everything. The ability to breathe, eat, swallow, walk, talk….
3. Lastly I wish the ALS foundation would use their money to invest in the lives of suffering people, not just use the bulk of it for research. ALS is devastating, the lives of so many are crushed not only by sickness, loss of identity, grief, but also mounds of financial debt. The medications or tools (respirators, wheelchairs) that a person needs to survive are freaking expensive! Could the ALS foundation also look up ways to get free medication to people, or lower medical costs? Or like I mentioned earlier look at the LYME-ALS connection, because if people were treated early on, this could mean that people could get better and avoid ALS all together. But of course that creates a problem… that would mean there is effective treatment out there that is being suppressed. I used to live on a busy street growing up, we had a huggge yard and I was always outside. Ironically my house, and the two neighbours beside my house, both ended up suffering from different neurological illnesses. I had late stage neurological lyme disease, my neighbour beside our house got ALS, and beside them our other neighbour had severe MS. I just find it ironic that all 3 of us, that lived beside each other all ended up so sick with “neurological” illnesses. One of my friends shared a similar story with me, which actually is frightening if you think about it.
Heather Askeland recently committed suicide because no doctors were willing to help her and she could not afford the medical treatment she needed because she was labelled as having a psychosomatic illness. This happened a few weeks after hearing about another lyme disease suicide in Quebec.
For every dollar you donate to the ALS foundation, imagine that each dollar represents a person.
Now imagine that each person is contemplating suicide. Research, although good, does not help fight that battle that is so near and dear to so many with chronic illness. Research helps the system make more money and produce more meds that make more people sick and only relieve symptoms. These meds never cure’ or eliminate the problems that are keeping people sick. I’m not saying that borrelia is the only link, but we know that viruses, bacteria like chlamydia pnuemoniae, mycoplasmas, anaplasmas, harsh chemicals, asbestos can cause serious illnesses, diseases and cancers. If we know the causes why aren’t we looking at ways to eliminate them from the body and brain? I think we should all ask about the types of continued research that the ALS foundation is planning to do before a person donates money to their cause, so far it’s all about genetics, but a lot of people with ALS, were healthy and then became sick. Genetic markers don’t equal a “cause”.
How much money do you need for a research?
How much money do you need to help someone?
My hope is that the medical community will start to recognize lyme disease and HELP those who are suffering
so that they feel like they don’t have to end their lives and also prevent so many cases of neurodegeneritive disease caused by an underlying borrelia infection.