What am I doing this forty-fifth year anniversary of the failed War on Drugs? I’m in a plane on my way back from Uruguay; a country that completely legalized cannabis in 2014. I was delivering a lecture in Uruguay to over one hundred physicians from all over South America. I shared the stage with world renowned researchers, who combined have been published in excess of 500 times. So how do I fit into the mix? I don’t have initials behind my name or a fancy degree, I am “just” a mom.
A thief began to frequent my home in 2003. He, like all thieves, had no concern for the occupants inside. For some sick and twisted reason he continually attacked my son. He would enter violently during the night and stay un-invited to wreak havoc during the day. Had he not been so fleeting, I would have wrapped my hands around his neck and exacted justice myself. The thief was epilepsy, Doose syndrome to be exact. He stole my son’s health and my family’s peace and normalcy.
My son, Zaki, began have seizures in the fall of that year. This was the beginning of my honorary neurology degree and why countries fly me in from across the world to educate doctors, even though I am not one.
By the time he was five years old, he had had over 500,000 seizures. I am not prone to exaggeration. I know he had that many seizures because I spent a good portion of my days tracking everything about my son. How long he slept, what he ate, pharmaceuticals, supplements, seizures, mood, when he pooped…everything. By the time he was nine years old, seventeen pharmaceuticals had failed him, and he was receiving hospice palliative services. Advanced directives were the topic of the day, and the only vacation my family had been on in the last decade was a Make-A-Wish trip.
This entire experience caused me to really question God. Perhaps we are not supposed to do that, but I needed clarity and I can be real with you, right? God has broad shoulders, God can handle it. I was asking the age old question of how can an all loving and all powerful God allow so much human suffering? I was going on a decade of trying to keep my kid alive. More personal, “God, why are you allowing my son to suffer?” If there is a theologian or philosopher who claims to have the answer to this… run. They don’t. They may tell themselves or you something to be “okay” with suffering. We do not know the intention of God in allowing these things. “For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts.”
In addition to logging every detail of his life in my notebook (I even had graphs of the six different seizure types including frequency and duration.) I became an avid researcher. I would hook up the pulse oximeter (the machine that would alert if his heart stopped or his breathing ceased) as a part of Zaki’s goodnight routine and get on my computer to search published research papers for any clue to help him. I would read all the additional research papers that were cited in specific journals. I would read all of the peer reviews. I’m thorough, what can I say? I also connected globally with families who had children with Doose syndrome and the doctors who treated it.
My research brought me to a then-little-known compound called cannabidiol (CBD), housed in cannabis. Yes, marijuana. This is a component of the plant that is not psychoactive. It has many medical benefits that include anti-inflammatory properties and is also a patented neuro-protectant and antioxidant. Guess who owns the patent? The United States government. Yes, the same government that says cannabis is a Schedule I Substance–a substance that is highly addictive and has no medicinal value. The same body leading the war on drugs. Now I’m not a conspiracy theorist…but that’s fishy, and a topic for another day.
If I am a child of God, and I am praying excruciating prayers to my God for a solution, and God leads me to finding one, one God in fact created (you cannot create a seed in the lab, God created it) and God is the author of all good things, then wouldn’t God be the reason I found the solution? That is one heck of a run on sentence, but the logic is there. Yes, I can and do thank God and give God the glory for cannabis. Sounds crazy. But it only sounds crazy because of the stigma and social barriers surrounding this plant. Not because it is actually is crazy.
My story in a nutshell is that my son’s condition went into remission and I then went on to establish a foundation called the Realm of Caring to help families in the same situation I found our family in. We are furthering research with partners such as Johns Hopkins University. Realm of Caring writes checks every month to families who cannot afford the financial burden of cannabinoid therapy. We relocate families who need to get to a medical cannabis state. We are the only organization that you can call to ask general questions about cannabis and seek dosing advice. Over twenty-five thousand families are connected to us, along with over 250 doctors from all over the world.
I opened this article calling this a failed war. It is that simple. If the very expensive War on Drugs, costing the Federal and State governments over 40 billion dollars (that is 9 zeroes) in 2010 alone, was successful then there would be less documented drugs in our country, less drug use, and our prisons would not be full of non-violent criminals. Also, as a country, we would have started the research that would have saved my son and hundreds of thousands of others from suffering needlessly much sooner. The War on Drugs has caused too much red tape and too much suffering.
A very simple definition of failure is ‘to lack success.’ I believe Einstein said the definition of insanity is to continue to do that same unsuccessful thing over and over and expect a different result. We should stop the insanity.
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Thank you for sharing your story and giving us a perspective we need to consider. Thank you for helping others to understand the medical benefits of cannabis.