“Caveat Emptor” Noun- The principple that the buyer alone is resposiblefor checking the quality and suitability products before a purchase is made.
There is nothing more objectionable to me, more offensive than those who prey upon the vulnerable, the desperate. They peddle false hope and the promise of “A Cure” for what ails you. No matter the illness, the snake oil salesmen lurks in the shadows insidiously seeking to profit from your pain. As someone who suffers from a rare genetic disease I am all too familiar with the false claims, hyped promises and breakthrough treatments peddled online and in the real world. For me, for my condition, I have seen the vitamin therapies, herbal remedies, retinal electric stimulation, ocular acupuncture, oxygen therapy and a very long list of sure fire cures that make promises ranging from halting the progression of vision loss to all together curing the disease. If I had a nickel for every “Cure” I have seen or had emailed to me by a friend or family member who had read some new breakthrough treatment, I wouldn’t need to work another day in my life because I would be a millionaire. Here is the truth, it is a bitter pill to swallow, it was for me as it relates to my eye disease. It is a truth I had to learn and accept and one that applies not just to those who suffer from degenerative eye diseases but from a whole bunch of medical malady’s. Chances are, there is no cure. No magic pill, no syringe filled with healing elixir or comfort through poking, prodding, needles or electric shock. This does not mean that there aren't efforts afoot, it just means that maybe you should read on, listen to what I have to say and see what you think. I want to begin by asking that you understand this, I know there are some very promising studies underway that may in the future become viable treatments. I never want to be the one who sounds the defeatist alarm, however, I will call to attention those out there peddling false hope that offer little more than separating you from your hard-earned money. They seek not to help, but to take you off the path you were meant to travel and meant to conquer.
The one thing that the snake oil salesman counts on comes from the old adage, “Hope springs eternal.” Right about now you are asking, “How are you so sure that any one or all of the above-mentioned treatments are bogus?” For me it is simple. There are some pretty wealthy and influential individuals who suffer from my particular disease. A couple are billionaires, for the purpose of my point I will use one, Steve Wynn, the Las Vegas Casino and Resort mogul. As I write this, Mr. Wynn is still going blind, his money hasn’t changed that fact and we are equals on the vision front. Probably the only thing we have in common. The point is that if you are thinking about or are dumping money into vitamin therapies, ocular acupuncture or God forbid electrically shocking your eye, yes, that is a real thing, then please stop. Take a breath, do some research and most importantly, look to those who have money and influence who may be suffering from what ails you and see if their quality of life has changed, if they are cured. My guess is, they aren’t. Despite all the money that has been spent we still see bald men, we still see overweight people, people are still blind, still suffering and dying from certain forms of cancer. Steve Jobs, the founder of Apple had all the money in the world and even he didn’t beat Pancreatic Cancer. I make this point not to dash your hope, I say this because I would rather see you save your money and the agony of not only losing your battle, but losing it with less of your hard-earned money in your pocket. P.T. Barnum was noted for coining the phrase, “There is a sucker born every minute,” I am asking you not to be a sucker.
I understand better than most the hope that exists with the promise of a cure for my eye disease. I miss seeing the face of my wife and my children, seeing their expressions. I mourn not seeing my grandchildren as they grow and mature. I miss my personal freedoms like driving, hunting or fishing. The one thing that I don't miss is the money I could have wasted chasing a promise made by someone more interested in lining their own pocket than in curing me. Now, I know for a fact that I am going to receive some very negative feedback regarding this. As a former political writer, I am accustomed to getting more than my fair share of hate mail. However, before you pass judgement on my words, take a pause, make sure that your desperation that is being protected by your pride is tucked away and understand that these words are meant to help not hurt.
The above contains some hard words, words that may rob hope, and change that old adage from hope springs eternal, to hope is worthless. Nothing could be further from the truth. There are groundbreaking studies going on as I write this. After cracking the code to the human genome genetic therapies, stem cell therapies, there exist a host of medical promises on the horizon. Add to that the technologies available to augment the lives of those with disabilities. I recently had a discussion with someone who is the friend of a quadriplegic. An individual with a brilliant mind trapped in a broken body and confined to a bed unable to ever leave. However, through robotics and computer technology a very small robot was developed and equipped with an array of cameras. This robot is put in museums, and he controls it with a computer and navigates it through the museum giving him the ability to “Virtually” and freely visit a place that he desperately misses. I was told that since the development of this technology he has visited over 13 museums around the world including The Perot Museum right here in Dallas. Recently I teamed with a company, AIRA. I wear a pair of glasses connected to a live agent who sees for me through a small HD camera located on the glasses. This technology has not “Cured” the fact that I am blind, however, it has augmented my visual reality allowing me to do things that I have not done on my own in decades. Finally, I will leave you with this thought. Stephen Hawking was arguably one of the most brilliant men of our time. Confined to a wheelchair incapable of speaking or any movement and he penned some of the most brilliant work as a theoretical physicist and taught at University. The augmentation of physical disabilities using technology is evident and everywhere. These two men didn’t waste their time or their minds lamenting what life threw at them, they prospered in spite of it. This is what I am attempting to emulate and if you want to read my AIRA story it is on my website. The point is that in a time where hope is taken advantage of by a few, it is actually being delivered by those among us who represent our better Angels. They don't make the promise to cure your disease, they are busy trying and succeeding in augmenting the reality you find yourself in now. Couple that with some of the great studies that are going on to genetically correct physical deficiencies and we arrive back to that old adage that “Hope does Spring Eternal.” Rather than looking for the cure, look for the tools and the resources that can augment your reality and have the faith and the patience that somewhere out there on a very hope filled horizon, someone is working diligently to deliver your cure but for now, you need to be your own miracle, your own cure.
I know because I am one of you, someone who lost a sense and with that loss comes a whole host of emotions, desperation, depression, anxiety, isolation, loneliness just to name a few. It is in this moment we are susceptible, vulnerable and would do anything to have the life we dreamed of or the one we had. The reason that I am writing this and the other pieces or articles lately is that I want to help shift mindsets. I want to help people to get off of the path they are on, the paths that lead to disappointment, sadness and further isolation from the world. Our reality is that we can’t see, the answer isn't to seek out the cure, the answer is to find a new way to navigate the world, augment the lack of vision through basic practices and new technologies. As you figure that out, keep hope alive that there are answers to a longer-term solution coming. These answers may not come in our lifetime and in that case, it is our duty, our calling to serve as examples to those who come after us. For me, the answer has not been a cure, it has been the addition of technology. An ambitious man, Suman Kanuganti had a friend who was blind. Not satisfied with seeing his friend live the status quo life of the blind he set out to create a solution, not a cure but a work around, a tool to improve the quality of life for someone he cared for. AIRA came to be and is now changing the lives of countless people who had confined themselves to a life of lowered expectations. In doing this he has transformed the life of the blind and low visioned lifting them up by creating a higher expectation and delivering a product that has revolutionized life experiences. This is a generational shift, a watershed moment for my community and a window into the possibilities of the future.
Many of us have children. These are kids that may or may not win when they spin the genetic wheel of misfortune. If they do, if they are lucky enough to escape the life you are living then that is a blessing. However, even if they escape your genetic misfortune it doesn’t mean that they will escape the tests and trials of life. That is why who you are, how you react to your trials or your test in this life truly matters. It matters because if you are a defeatist, if you are the sucker who spends their time and their money trying to avoid your test, your trial, what example are you leaving them? For me, I want my children to know and to witness a father who never let life treat him like a sucker or someone who is a victim. This disease doesn’t own me, it doesn't define me or dictate my actions. I own me, I own this disease and I make the decisions on who and what I am or will be. So, be strong, if not for yourself, be that shining example for someone in your life who is suffering. Make your mission in life, your goal, to leave more on this earth than you have taken when the final tally is calculated. Trust me, you will feel better in the end and the legacy you leave will be a roadmap for others.
@aira #aira #myairalife #onmyterms #whatsnext #jabfund
Photo below is an image of an old vintage advertisement for a bottle of "Snake Oil." The ads title is "The Original Cure All." It lists various ailments with the claim "Relieves Instantaneously." At the bottom of the ad it says, "For Blindness try our Rattlesnake Oil!"