This is one of my posts that will certainly stir the pot. I have a simple way of evaluating trends, fads, or actions in the world. I attempt to live my life and make my decisions based on my principles. My principles are formed from 1. My relationship with God, 2. Natural law, 3. A conscious deliberate thought process that is congruent with 1 and 2. I recognize that right off the bat number one puts many people on edge and even causes visceral reactions is other people. I am okay with that because I live my life that way and if you are reading this, you probably know me and know this is true. That means you are willing to tolerate the part of my life because you still appreciate me as a person even if you don’t agree with me.
So why am I explaining this to you before I jump into my ruminations? Because so many people shout their opinions without explaining the why behind their thoughts or ideas. I want to be transparent with you. I am not telling you to agree with me. I am inviting you into my heart and mind. I am being genuine. That is something that is sorely missed in our world today.
Pink and ice are different, yet the same. Pink is the breast cancer mega money machine. Ice is the fad way to raise money for ALS by dumping a bucket of ice water on your head and challenging others to do the same. How are they the same? They both prey on the masses of people who really want to help find a cure for two deadly diseases. The actions of the participants are very real and their willingness to throw their energies behind something like overcoming deadly diseases is honorable and noteworthy. The problem is the machine behind the campaigns. This is far more true for breast cancer than for ALS simply because it has had longer to create its own behemoth bureaucratic structure.
In 2011, the cancer non-profit movement collected over 6 BILLION dollars in sales and donations. Over the past three years, that number has increased at least 25% according to Forbs. That brings the total to at least 7.5 billion dollars each year. That is a lot of money! To put it in perspective, the amount that is raised for cancer is greater than 11 states spend on their annual operating budget (not combined, individually). I have a former patient that works for the National Institute of Health (NIH). One of his jobs was to determine how to divvy up funds for dispersal. I asked him about the big cancer non-profits and how they support research. His response was very telling. He simply laughed at me and shook his head. After a little more prodding from me, he respectfully said that most never makes it to the lab.
So where does the money go?
An awful lot, sometimes over 60%, goes to raising funds!!! A lot also goes to operating budgets. Some of the chairmen/CEOs are paid over $2,000,000 per year and have hundreds on their staff. There are also the funds that go for support for those who are dealing with the disease. I have no problem with organizations providing support and care for those with these huge life hurdles. The problem I have is that it is a bait and switch. They say they need your money to find a cure, but send a lot of funding to support. Why not do what you say you are going to do? If you need money for support, say so. In some ways, I think that palliative support is the best way that these non-profits can spend their money.
Much of the research is conventional and that is a problem. When funding does make it to research, it tends to support the same old same old. What I mean by that is that the money tends to fund already established treatments. There are many researchers and a few hospitals doing great and innovative work. They rarely see a penny from non-profits.
So when I see the slogan, “Think Pink!” I see red and the non-profits see black in their ledgers.
Now, on to ALS.
What is ALS? ALS is Anterior Lateral Sclerosis or Lou Gehrig’s Disease. It is terrible what is does to a person. I have cared for several people with it during my years in practice. It slowly removes muscle tone and movement from people. They literally become trapped in their bodies. Unlike a person who become paralyzed due to an accident and the impact is immediate and instantly tragic, ALS is like Chinese water torture. Drip by drip, day by day, loss occurs. Several years go by and the person who once walked, talked, and tended to all their basic functions is reduced to 100% dependency on others. Eventually, the act of breathing is more than their body can support and that necessary function is lost.
The ice bucket challenge is taking the world by storm. If you pour a bucket of ice over your head, you only have to donate $10 to ALS if you refuse, you are supposed to donate $100. When after you pour the ice water over your head, you are to call out three people and challenge them to do the same. Every one from Bill Gates to your local barista is doing this. Again, I applaud the willingness and generous nature of people to support those with ALS. But how much of the money is actually going to activities that will find a solution for this deadly disease? I have spent some time doing research and what I have found is contradictory and inclusive. Because I cannot clearly get a picture of what is happening, I will not begin to speculate on the money side of the issue.
I will comment on the research side of the equation. Most of the research, like cancer, is not very innovative. There are some scientists that are doing some inventive and, in my opinion, remarkable work, but they are shunned and not embraced by the big players in the field.
When I consider historical events and breakthroughs in science, there seems to be a pattern that is predictable. When we humans really want to do something, we do it. If we want to send a man to the moon, we find a way to do it. If we need to find a way to increase the outcomes from surgery, we do it. If we need to find a way to harness energy and distribute it, we do it. However, each of these breakthroughs was an accumulation of pervious visionaries. These forerunners were often criticized, punished, and sometimes, even killed for their ideas. They knew that there was a better way. An unconventional way of looking at the problem or opportunity, that no one else had considered, and were willing to stake their reputation on their idea in an attempt to solve the problem.
The “research machine”, as I call it, rolls on and often tries to roll over those visionaries. I think that these people with their oddities and revolutionary ideas should be funded and let loose to create. Let the government fund the predictable. Let the non-profits, fund, I mean really fund, the unpredictable. Let them put their money where their mouth is. Let them be a real force for change. If 99% of the researches fail, so be it. All that is needed is that 1% to succeed and radically change the paradigm. I personally think that is how we can create action and improvement with chronic diseases.
Because that is not the case, I do not support these non-profits. They go against my principles. I will stand with the individual who has cancer or ALS. I will care for them, encourage them, serve them, pray for them, and love them to the best of my ability. But I will not support something that is fashionable or trendy when I do not agree with its purpose or intent despite its public image.
Finally, I want to address suicide after the passing of Robin Williams. I cannot say that I have ever had thoughts of killing myself. I have wondered what things would be like without me. But that is much different that taking my own life. I do know people who have struggled mightily with taking their own life. I once lived with a guy that I never knew was depressed. One night he wrote a note, took a gun, and was going to take his life. He held the gun to his head and couldn’t do it. He shot his foot instead. My room was upstairs. I head the shot and wondered what happened. I went into his room and found him on the floor writhing in pain. I saw the note on his bed.
I have had numerous patients confide in me their pain, suffering, and torment and the many times they thought the only way out was to end their life. I have shed tears with them as they have recounted their trials and struggles. Their plans and failures to end the suffering were related to me with fear, anger, sorrow, pain, and doubt. I am so thankful that each one of them waited. I am so grateful that I have known them. I am so blessed to have them in my life. I am proud to call them my friends. I see them now as victors of the highest order. They have faced death from within and won.
There is no courage in taking your own life. Life is the most precious gift we have. That does not mean that we do not have pain. It does not mean that suffering is not real. Pain, guilt, suffering and loss are part of living. I am so grateful for my relationship with God that sees me beyond my circumstances and provides a way; a way of grace. A lifeline that is perfect. It is freely available to anyone. How cool is that! That overwhelms me. We try and try to carry our burdens. Frankly, I am not designed to carry them. I am a wimp. I can’t do it. You can’t either. Even if you think you can, you are only weighing yourself down with needless encumberments. I consider it a tragic loss that anyone should take his or her life or anyone else’s life.
I read a commentary several days after Robin Williams death about how he was innocent and how much courage he had to finally do away with his depression by killing himself. It caused me great pause. Within a few hours, I saw the same article going viral on Facebook. The article was being used as a victory flag for those who have committed suicide. There is no victory in death when we claim it ourselves. How can there be? We experience victory by living. As I said earlier, I consider those who have faced the inner demons of death and found life, victors in the here and now.
I know that I cannot conquer the grave. I cannot solve the problem of beast cancer or ALS. I cannot take pain away from another person. I know that I have been healed of deadly malaria in my own life. I know I have seen victory of my own shortcomings. I know that my biggest advocate did the work. All of it! I can sit here, type away at my keyboard and smile at how much He loves me. My heart beats faster and my body feels free. That is my joy in life.
For me, Jesus makes me whole. And for that, I can live each day with peace, humility, and joy so I can love and serve other.