I would like to introduce to my readers my friend Tom Ohlson. He was diagnosed the same year I was and we are both “venterloquists”. Although the circumstances suck, I am glad to have met him and am excited to present the following as a guest-blog entry. I feel exactly the same way.
Last week, on the 4th of July, scientists announced they may have discovered the Higgs boson. Frankly, I think if it were not a holiday and if there was nothing else newsworthy taking place, this announcement would have still have received little notice despite the significance of this discovery. This is unfortunate for a myriad of reasons, not the least of which is how American scientific curiosity has been replaced by a need for superficial sensationalism. Dont take my word for it–just look at the amount of major network news airtime devoted to the Higgs boson announcement vs. the Tom Cruise/Katie Holmes divorce announcement. Still, the discovery of the Higgs boson sounded a clarion call across the planet–great discoveries are still out there to be made and with them, comes great hope.
As we celebrated the birthday of the United States that day, it was evident just how shallow our country had become. In a nation founded by citizen scientists and deep thinkers such as Franklin and Jefferson, we now look at science like Dorothy and her companions viewed the Wizard of Oz–a mysterious force that sometimes grants wishes. Instead of wanting to know how our world works, we only want to know that it works. Instead of learning the issues ourselves, we allow the media, politicians, and PR types to influence our decisions. We have neither the time, nor inclination to learn even the simplest science–unless we learned in school, let others figure it out and well just go along with what they say. To tell the truth, I was just like most Americans until recently. If not for my diagnosis of ALS, I probably would have remained a Monday morning scientist Hey Bob, did you see the eclipse last night? Solar, lunar, whats the difference? Did you hear about Tom Cruise and Katie Holmes? If its not worth watching on the Discovery Channel, its not worth knowing. Sad to say, our interest in science has been reduced to how entertaining Hollywood can make it.
Maybe, thats not a total loss. As a grad student, I once taught a college course in American Government. The course professor insisted each student have a daily subscription to the New York Times. Granted, many in academia would argue that the Times is the gold standard for daily news. However, these were 18- and 19-yr. old undergrads, more interested in the next keg party than the minutia of daily politics. Knowing this, I argued that the students would be much more likely to read the paper if it had simple articles like those found in USA Today–simple was better than nothing. Nevertheless, my argument fell on deaf ears and I can only imagine all those New York Times subscriptions that found the recycling bin before a single article was read. That said, I suppose a glossy, but hollow science segment on TV is better than nothing.
In 2005, I was told I had a terminal illness for which there was no known cause, no viable treatment, and no cure. That was it. I was only in my early 40s, but I was a dead man walking. Most Americans believe the mantra that if we eat right, exercise, and live within moderation, we will live to a ripe old age. Despite following this instruction manual, I was broken and nobody had replacement parts. I stopped seeing my neurologist, because all he would do is shake his head and mutter how devastating ALS was, and I buried my head in the sand hoping it would all just go away. Didnt work. As my body slowly rotted away, I desperately looked for answers. Unfortunately, what I discovered was disheartening. No diseases were being cured. Big Pharma had everything geared toward marketing medical conditions. There were billions to be made in drugs and treatments to manage disease. Curing them would eliminate all that profit. ALS only effects 30,000 Americans, so developing drugs to treat it offered little financial incentive. I was screwed. So, I started to look outside the pharmaceutical industry for answers. In order to understand what I was looking for, I had to rewire my heretofore keg-seeking brain for science. Not an easy task, but these days I am devoid of a job and a life in general, so I have had the opportunity to do something I never actively did before–study.
The good news–I have found scientific disciplines of which I excel at studying. The bad news–none of them relate to ALS. However, (and this is really the point of this writing) like those undergrads I wanted to have read USA Today, I am now at least able to discern trends and discoveries of significance and I will say this–we are on the verge of a medical revolution, the likes of which have never been witnessed by the human race. That said, we are only at the beginning of this revolution and many of us may never live to reap its benefits. Nevertheless, I have no doubt that a child born today will never have to fear ALS, MS, Alzheimers, and most other diseases. Thankfully, Big Pharma has met its match in an even more powerful industry–insurance. The insurance industry has been getting killed by Big Pharmas string em along policy. The insurance industry needs us to either die quickly, or live healthy. Since western society wont tolerate early death, healthy lifestyles are the only option. So, we see the sudden advent of regenerative medicine, stem cells, gene therapy, etc.
Stem cell therapy alone, is developing at a phenomenal pace. Seven years ago, the best one could hope for was an offshore procedure, which simply transferred cells from one body part to another. Huge controversy surrounded the use of embryos, which were considered the most viable source of stem cells. Today, a patient can use their own cells, which can then be manipulated into the needed cell type, thus avoiding any ethical or rejection issues. Countries free from regulatory and Big Pharma constraints such as Israel and China, are developing stem cell technologies to rival our own. Entire organs are now being created in the lab, paralyzed mice are walking again, and some patients are seeing complete reversals of their medical conditions–all from stem cells. One can only imagine what we will see from stem cells seven years from now!
Seven years ago, there was only one drug available for ALS patients; a drug which prolonged life expectancy a whopping 2-3 months! These days, there are a number of promising drugs currently in clinical trials, with dozens more being looked at. Diaphragm pacers are now prolonging the need for invasive breathing procedures. Reports of ALS patients improving after receiving stem cell treatments both here and in Israel are generating a buzz in the ALS community. Did I contribute to any of these breakthroughs? Of course not. Did my newfound interest in science make a difference? Yes, it saved my life. I cannot overstate that enough. By understanding on at least a very basic level where the science was taking us, I found hopeand hope is what sustains me.
So, what does the Higgs boson have to do with all of this and whats its significance? Stephen Hawkings bestseller, A Brief History of Time was supposed to be a laymans guide to understanding these types of theories, but every attempt of mine to read his book resulted in me giving up after two chapters. I am obviously the last person who should attempt to explain the Higgs boson to anyone. In any event, heres my attempt. The Higgs boson, also known as the God particle, was first predicted almost 50 years ago. The boson and its corresponding field are the final pieces of one of the most successful physical theories in history–the Standard Model, which encompasses all of nature’s fundamental particles, and every fundamental force apart from gravity. The Higgs boson is believed to be a catalyst for the Big Bang and the creation of the universe. That said, the real significance for us mortals who cant fully grasp all of this is that science persevered. Despite all the crap we now occupy our lives with, despite the dwindling interest in science, despite monetary disincentives, scientific curiosity still exists. Those noble souls who toil away far from the spotlight, let us know that the secrets of the universe are still attainable and through their deeds, hope springs eternal.