Searching for Light in the Darkness: My First Year with Epilepsy
One year ago today everything changed. On the evening of March 1st, 2016 I went to bed. Some hours later, I woke up in the hospital to be told I had just had a massive seizure. Moments later I had a second one. Just like that, the life I knew was gone, and everything was different.
It has been a challenging year to say the least. Growing up with a rare genetic condition known as Gaucher’s Disease, I had been though a lot. And yet, this has probably been the hardest, most challenging year of my life. I started this blog to document and share this journey, and if you will give me some of your time today (it’s kind of a long blog) I will share with you my experience.
As with any story, we need to start at the beginning. . .
In February of 2016 I was presented with a few unexpected challenges. I was told I had to stop teaching my yoga classes at the studio where I had spent the past 4 years, and where I became a yoga teacher. It was a second home for me, and it really hurt me. I also was informed that the place where I had my acupuncture practice had been sold, and I needed to find a new place to practice. It came to my attention that the universe was sending me a message. A time to reevaluate my life, and what I was doing with it. Two of my greatest passions, and my sources of income, were both being substantially altered. I knew it was time to make some changes, and so I decided that on March 1st I would begin a Yogic cleanse to clear my mind, and body, and look at things with a fresh perspective. I had also been smoking a lot of cannabis to help me with my IBS, and the after-effects of my monthly Gaucher’s treatments. I was also generally exhausted as our nearly 1 year old daughter was still not sleeping through the night and I couldn’t remember when the last time I had a solid night of sleep was.
And so, on the night of Monday, February 29th, 2016 I taught my final yoga class, and when I got home, I smoked my last bowl of cannabis. I had already prepared my Ayurvedic cleansing food known as Kitchari, and I was ready to go. As the new month began, so too would I begin anew.
I woke up on March 1st, eager and ready to look deeply at my life and what I was going to do with it going forward. From the moment I woke up, I did not feel good. All day long I was weak and shaky, I was hot and cold, I was tired, and I was not okay. By about 7pm that night, I was ready for bed. I said goodnight to my wife and kids, and hopped in bed hoping that a good night’s rest would help me feel better the next day. Little did I know what was in store for me.
My wife, trusting her intuition that something wasn’t right, decided to come upstairs and do some work in our bedroom so that she could keep an eye on me. Sometime later I rose up out of bed with a strange moaning sound, eyes wide, and body stiff. My wife told me that she thought I was possessed, as that is the closes thing she could think of to describe what I looked like. And then, I fell over, shaking, and spitting blood. She thought I was dying, and called 911. I have almost no memory of what happened next, but apparently I was very uncooperative as the paramedics tried to get me into the ambulance, and they has to sedate me. My first memory is of being on a bed in the hallway of the ER as my wife and the doctors tried to explain to me what had happened. I recall raising my hand to ask a question, and then everything just stopped. I couldn’t think, couldn’t formulate a sentence, not even a word. Everything went totally blank, and I had my second seizure in the hallway of the ER.
Sometime later, I came to, totally disoriented and totally in shock. Last thing I remembered was going to bed at home, and now here I was in the hospital, drugged up, and strapped down, being informed about my seizures. I didn’t really regain full consciousness until much later when I was admitted to the actual hospital. The Adam that went to bed at home was gone.
For 3 days in hospital I was given test after test, procedure after procedure to figure out what had happened, and why. Every test came back normal. There were no answers. But, because I had had 2 seizures, it was an automatic diagnosis of Epilepsy. And so began my journey into the “dark night of the soul.” My driver’s license was taken away, my work put on hold, and my brain altered by Anti-Epileptic meds. My entire life as I knew it, gone in an instant. Little did I know it, but having the seizures was the easy part.
After leaving the hospital with more questions than answers, I had to adjust to a brand new way of life. No work, no license, and daily pharmaceutical drugs. Not medicines, drugs. Why do I say that? I believe that Nature makes medicines, and people make drugs. The drug that I was given when I left the hospital was Keppra. Now as it turns out, the nickname for this drug is Kep-rage. I found this out the hard way. My entire personality changed. I went from a compassionate, loving yogi, to an angry, rage fueled asshole. And that is putting it kindly. The slightest, most meaningless things turned me into a mean and scary man. Think Jekyll and Hyde, or Bruce Banner and the Hulk. That was me, without the bonus of superpowers. My family was actually scared of me. I am truly grateful for the years of yoga and meditative practice I had under my belt, otherwise I fear I may have actually hurt someone. It really was that bad. I knew I had to get off of that drug, and so I met with an epilepsy specialist to see what I could do. She had another drug I could try, but not right away. The thing about anti-epileptic drugs (AED) is that you cannot just stop taking them. If you do, it can give you seizures! And so, it took nearly 3 more months to get off of the Keppra and onto my current drug called Vimpat. All in all it took nearly 6 months for me to get the drugs straightened out. It was a massive challenge for me, and all of the people closest to me as well. This process was far worse than the actual seizures. The process significantly effected all of my relationships, especially between my wife and my children.
I was truly lost. Disconnected from the people that cared most about me. Disconnected from my spiritual practice, something so important to me. Simply disconnected from life itself. I came to realize the man that I once was, no longer existed. He went to bed on March 1st, and never woke up. A part of me died that night, and in his place a darkness took hold. It may sound dramatic, but it is a truth that has been haunting me for a year now. A truth, however, that I could not, and would not live with.
I found a new strength, a new motivation to do the work I had to do, to become the man I knew I was. The spiritual being in this human experience. I started writing again, playing music again, reading the right books and remembering the real Truth of my being. It didn’t make all of the darkness go away, but it started to let the Light back in.
It is a battle I fight everyday. A battle I have to win. The stakes are incredibly high, because I don’t live in a vacuum. I have an amazing wife, and 2 incredible children. They need me to win this battle just as much as I do, if not more. Slowly, but surely I am finding the Light in the darkness.
And so the question now, is what happens next?
After much soul searching, research, and reflection I have made a bold decision. I have decided that it is time for me to get off of the drugs, and find the answers no one has been able to provide me. Every test, every single one, over the last year have all come back normal. EEGs, MRIs, Sleep deprivation and strobe lights. All normal. This is a good thing, as it means there is no ominous cause. It is also deeply frustrating because it means I am on these drugs, and facing these challenges based on someone’s opinion. Granted, it is the opinion of Epilepsy specialists, but an opinion nonetheless. At this point, it feels like the drugs have been more harmful than helpful, and I am not okay with that any longer.
From the depth of my being, I do not believe I have Epilepsy. I think that I had those seizures because of the perfect storm of circumstances. High stress, lack of proper nutrition, and the sudden stopping of medical cannabis (a known Anti Epileptic Medicine) all converged on that fateful evening of March 1st 2016. A wake up call from the Universe to check in and re-evaluate my life, and what I am doing with it.
The only way to know for sure, is to get off the AEDs and to see what happens. Only then will I know for certain if I do in fact have Epilepsy. To that end, I will be checking into the hospital on March 20th. I will spend a week there and my AEDs will be lowered and then stopped over that time. I will be monitored by EEG 24 hours a day, and under video monitoring as well. I wont be able to go to the bathroom on my own, nor stand or walk around, because as I mentioned before, getting off of AEDs so quickly usually leads to seizures. It will not be an easy process, but it is a process I have to go through to find the answers that my Soul has been seeking for a year now.
Some people, my doctor included, think it is a ridiculous thing for me to do. That nobody does this by choice. Well, I am not your average, ordinary patient. I listen when my Spirit speaks. After a year of it screaming loudly, it is time for me to trust it, and trust in the universe. My spiritual journey is the reason I am here. The reason I went through all that I went through as a child, and the reason I have gone though what I have gone through this past year. I am here to teach, to share the wisdom gifted me by these experiences, so that others may walk a little lighter, and live a little brighter. I am certain of it.
So, if you pray, I ask that you say one for me. If you do energy healing, send some my way. If you chant mantra, add a verse for me. Or light a candle, burn some incense, or play some music. In whatever way, and whatever language you express your love and gratitude to God, The Universe, Life, or any other power greater than yourself I ask that you consider me during the week of March 20-25th, 2017.
With tears in my eyes and gratitude in my heart, I thank you for your support and your love. Knowing you are with me makes this journey a lot easier. After all, I do what I do for each of you. To do my part to make this world, and your journey in it just a bit better.
If you haven’t already done so, I ask that you follow my page on Facebook. I will be documenting my journey in the hospital through photos and videos.
I hope you will join me. If you know of anyone else who may benefit from my words and my experiences, please share this blog and Facebook page with them. The more people I can reach, the more good I can do.
I am deeply optimistic. I know that the night is darkest just before the dawn, and I see the sun on the horizon. Regardless of how things turn out in the hospital, I know I will have answers, and with them I will move forward with a greater passion and determination than ever before.
After all, life is a journey, and this is mine.
As always, I invite you to walk with me, one step at a time . . .
About the Author
Adam is an author, transformational speaker, and stress management coach. His powerful yet approachable and easy-to-understand wisdom have the potential to make a powerful shift in your life. Combining ancient wisdom and modern science, he helps his clients achieve their personal and professional goals, free from stress and worry.
My journey has taught me some powerful, profound, and incredible things.
Walk with me, and I’ll teach them to you too.