The odds of being born with epilepsy is 1:72. Those odds are uncommon. From there, Epilepsy branches out into many different characteristics. Of those unfortunate few, myoclonus epilepsy effects 1:400. Those odds seem rare. Of those one in 400, the disorder grows more complex and even rarer. Progressive myoclonus Epilepsy takes a claim at one in 20,000. Those odds seem about an inch away from impossible. Raise your hand if you’re that lucky.
When I was just a boy, (late 1980’ – early 1990’s) I learned something about myself. During high stress situations, as well as extreme temperatures (both hot and cold), I would twitch in quick and repeated spasms. Lasting maybe a second or two long. It was random, no clear pattern, and I thought little of it. Every day since the age of 10, I had at least 1 per day.
Fast forward to the summer of 2006. Things escalated gradually. I had just turned 21. I was working outside, for a waterpark. Landscaping, and janitorial. On a bad day, I was having 50 of these tremors. And then it happened…I hurt myself. I couldn’t ignore it anymore.
I saw my doctor, and he referred my to a specialist. Before we could visit the specialist, that October I had my first seizure. And things suddenly got kicked into high gear. In his 25 years as a neurologist, he has seen it only one other time. He diagnosed me with (you guessed it) Progressive myoclonus Epilepsy.
I want to take a quote from one of the websites that I visited a lot.
“Progressive myoclonus epilepsy (PME) is a group of conditions involving the central nervous system and representing more than a dozen different diseases. These diseases share certain features, including a worsening of symptoms over time and the presence of both muscle contractions (myoclonus) and seizures (epilepsy). Patients may have more than one type of seizure, such as petit mal or grand mal. PME is progressive, but the rate of progression may be quick or slow, depending on the underlying disease.
Progressive myoclonus epilepsy (PME) is different from myoclonic epilepsy. In myoclonic epilepsy, the myoclonic jerking motions occur as part of the seizure. In PME, myoclonus occurs separately from seizures, the two respond differently to the same drugs, they evolve differently during the natural history of the disease, and they cause different problems for the patient. Some drugs that are good for seizures, e.g. phenytoin and carbamazepine, may tend to make the myoclonus worse.”
It is exceedingly rare, and despite it being so well studied and so documented there is little that can be done to cure or even treat it. No medicines would help, because what treats one symptom, will only worsen another. Life expectancy was “middle aged”. 40 maybe 45 years if I was lucky. The progressive part of Progressive myoclonus epilepsy is the underlying issue. It gets worse with age. Life expectancy is so low, because by that time, the victims system is so ravaged by seizures that it is only a matter of time.
Over the span of the next two years, I watched myself slowly unravel. I was doomed, and I knew it. There was little to nothing that I could do. The summer of 2008 came to a close. I logged an average of 90 tremors a day.
I don’t know how most of you are with math, but that is an average of one every 8 minutes. I could not even so much as write a sentence in pencil without fear of messing up what I wrote. I was staring down the barrel of a life filled with challenges, and hardships. The thought of daily seizures plagued my nightmares.
With winter coming, I knew I was going to be in for an uphill battle. My life had become a daily battle to just survive. I had no purpose, no plans to make, no dreams to seek, and nothing to push me forward. I decided… with what little time I had left, to devote it to something that mattered. There were few things that mattered. But the one that mattered most, was God. Even if I did not survive, I knew (even from a young age) that God was central to everyone, and everything.
So I attended Elim Bible Institute. My father attended the same college seeking his Biblical education, and my brother did as well, just a few years prior. It did not take long for the other students to take notice of the issues I was trying my best to hide.
One of the seniors sitting just the next table over saw my “displays”. His name was Ezekiel Goodfellow. Or Papa Zeke as he later became known. He quoted Scripture as he prayed for me.
Isaiah 41:10 Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
In that moment, I encountered the Glory of the Most High, in the form of divine intervention. Though it took me four days to fully understand what had just happened. Because over the span of those four days, my number of daily tremors, steadily fell… to zero. For the first time… in 13 years. The seizures left, and the twitches followed suit.
I stand before you today, as whole man. A life restored. A life with propose.
God did this for me, and He can do even more for you.
Keep it in Jesus.