Hey dudes! Today we get to sit down with RS family member, Jen! We're excited about her story because, I struggle with psychogenic non epileptic seizures too. What the heck is that? Well, when a patient's body experiences trauma induced stress, whether it's mental or physical, our bodies can go into to fight or flight mode in order to stop what's currently taking place.
Some people experience panic attacks and fainting spells, whilst others can manifest seizures. Don't be fooled by it's description as these episodes are very real. Just like in the way a panic attack would be. And it would be easy to feel deep shame around such a diagnosis. Jen is special though, and feels a sense pride in her body's protective measures. Find out how therapy and cannabis are her go-to meds for PNES.
A&A: Hey Jenn!! Introduce yourself....
JS: My name is Jennifer Lucchese-Soto, but people call me Jen! I'm 25 years old, live in Chicago, Illinois & have a wife, two cats, and a dog. I'm currently studying to become a real estate agent, having a background that spans across the marketing/real estate industry. My professional experience does not define me, though. Connecting with others through writing and storytelling is my passion. My desire to find those who share similar, yet unique experiences such as my own is how I discovered Rollin Stoned™ on Instagram!
A&A: We are stoked that you found us on IG. We've only met a hand full of people comfortable enough to discuss their symptoms. So, what's your disability?
JS: I've managed a seizure condition called Psychogenic Non-Epileptic Seizures for about ten years. I, like everyone on this earth, have baggage. A lot of my baggage exists in the form of past traumas. The traumas, some occurring decades ago, never been dealt with or even acknowledged, created a silent coping mechanism that worked until it didn't.
The ways I was raised to deal with hardships were to survive them and brace yourself for the next. Processing was a luxury I couldn't afford for the first several years of my life. That's not to say my childhood was terrible because that couldn't be farther from the truth. My life eventually stabled out, and I'm incredibly privileged in the life I have now.
A&A: It's so important that you've been able to make the trauma connection in your seizures. Even if the trauma existed years ago, your body still keeps score. In what ways does it affect you?
JS: This condition has affected me in a plethora of ways. When the seizures first began, I felt a lot of shame about the fact that I could not "blame" the seizures on a neurological issue, not that epilepsy is something I wished on myself or anyone else. I just felt more to blame for why the seizures were occurring. In the beginning, PNES was not a term used. Every doctor I saw told me that I was having pseudoseizures. After looking up the name, another layer of shame was added to what I was already feeling. In summation, this condition made me feel like I was broken for a long time. I felt fragile and sorry for myself for what seemed like an eternity.
A&A: I hear that! When I diagnosed in 2009, most therapists hadn't even heard of PNES. I felt like I was crazy. I'm proud to say today, that's not the case AND I have an awesome therapist with knowledge on the subject. So, when did you discover cannabis?
JS: I've used medicinal cannabis for ten months, but smoked recreationally when I was in high school! Not that I recommend breaking any laws!
A&A: haha! You lawbreaker you! So, how does cannabis help you now?
JS: Medicinal cannabis has given me my autonomy back. My seizures seem to flare up for months at a time. In two months, I've only had two seizures, which hasn't happened in years. Years! My last flair up lasted 8 months.
A&A: Wow!!! So glad to hear it!! Cannabis for the win!!! How are you currently handling the pandemic?
JS: I was laid off a few weeks before the pandemic impacted employment statuses in my state, so I feel like I got a "leg up" of sorts with spending a lot of time at home. I've been smoking a lot more weed, but have also tried using this time to try and heal. Heal from the last eight months of rough patches and putting my body and mental health through the wringer. Since I'm a medicinal cannabis user, I'm allowed to grow up to five cannabis plants in my home, LEGALLY! So, that's been fun! I've also been video chatting with my therapist every week, which has been helpful. Drinking water, along with mindful guided meditations, occurs daily for me.
A&A: Growing your own medicine is a truly rewarding experience, I'm glad you get to experience that. Also, meditation and therapy are key elements not only during this unique time but all the time. We think it's essential for healing. So, is there anything you want to say to someone struggling with your diagnosis?
JS:You are not alone, and you hold much more power than you might think! I won't lie and say that each day is a breeze because we all know that's not how life works. However, I can say that the more educated I became about what was going on inside of me, the better of an advocate for myself I became. There is so much power in self-advocacy, I can't say that enough. The last thing I would want folks to know is that as cliche as it may sound, it does get better. The last ten years have been filled with experiences I would not have had if I did not have to manage this condition. My disability doesn't define me, but it's a component of my life I'm proud to advocate on behalf of.