People With Epilepsy Can Save Lives

Chris Rich was diagnosed with Epilepsy at just eight months old but that hasn’t stopped him from living a full life, one that is committed to saving the lives of others.

Chris first started helping others as a volunteer firefighter and EMT. He was mostly operating as support in the fire department, which means he wasn’t breaking down doors and carrying people out of burning buildings but he was there and ready when the other firefighters needed him. He kept engines running and on occasion helped to put out exterior flames. As an EMT he ran thousands of calls. He would perform simple tasks of helping the elderly get dressed, which I for one did not know was an EMT’s duty but I’m glad to know someone is out there looking out for the underdressed elderly. He would also field major calls like providing emergency help for an overturned ski bus, but majority of his calls fell somewhere in the middle, car accidents, injuries etc. In his position as a volunteer EMT he learned that he had a knack for working with people who were intoxicated or suffering from mental health issues and decided to dedicate his life to helping them.

Chris’s next step was to get his degree in Psychology. The process took him six years to complete. That’s two years longer than the average student takes but considering Chris was experiencing 400 to 500 seizures a year I would say he completed it in record time.

Photo by Egor Kamelev from Pexels

When reminiscing about his college experience Chris shared a wonderful story as a reminder that it’s ok for those of us with Epilepsy to laugh at ourselves from time to time, and to be grateful for the love and support we receive from people who care about us. It was spring in Rochester, New York, a time of year when melting snow and fresh rainfall would combine to create rich fields of slush and mud. While trudging through the slush to the dorms with his girlfriend Chris experienced a partial seizure and decided to sit smack dab in the middle of a mud puddle. Without thinking twice, his girlfriend sat beside him, the two of them in the heart of campus just sitting there in the mud. As passersby looked at Chris, his girlfriend would usher them on saying, “Move along.” Chris laughed when he shared this story with me, and I laughed when I heard it. So many of us have similar experiences to this, things that on the surface sound embarrassing but if we can laugh at ourselves they are empowering pieces of what make each and everyone of us strong and unique.

But I digress. Back to the life saving!

After college Chris got a job in a 15 bed locked in patient psych unit where he led groups and helped feed and care for the patients. In this position he performed a lot of crisis intervention, talking people down from tough places before things became physical. His co-workers would acknowledge when he didn’t feel well and on those days he would perform lower impact tasks like paperwork. Having just listened to a podcast that said as recently as the 1940s people with Epilepsy were being committed to psych wards, I find it incredibly empowering and inspiring that Chris chose to work in one. Rather than being committed to a psych unit, he committed himself to one and to helping the patients there who couldn’t help themselves.

Chris’s next step was working in the emergency room of a level one trauma center. It was a very fast paced environment where he would see an average of eight clients in twelve hours. Many of the people coming through the doors were homeless or suffered from chronic mental illness and it was his job to assess whether they needed immediate treatment or another course of action. Many peoples’ lives were literally in his hands in this position and he came to the aid of each and every one of them.

Chris found himself in a new position working for a non-profit mental health center during the height of the synthetic marijuana crisis. In this role he was still conducting assessments on patients but his job was a bit more dangerous. He worked by himself, seeing six to eight people a shift with half of the patients would become violent due to illness or withdrawn but Chris didn’t waiver. He stayed strong and helped as many people as he could in his role.

Today, Chris has turned in the crisis units and dangerous patients for a desk and data analysts. His work is a bit quieter but it is still committed to helping others. Chris is now the guy who makes sure that the government holds up on its end of the bargain when patients receive state funded treatment. He processes paperwork that helps to keep people from experiencing crippling medical bills. It may not sound flashy but if you have ever experienced or even stressed about having to experience a medical bill without insurance, you know just how vital his job is.

When I asked Chris if he felt comfortable with my titling this post “People With Epilepsy Can Save Lives” because of the work that he has done for people with trauma and substance abuse he humbly said “Yes.” stating that he knew that he had saved four lives by keeping people on the phone until the police were able to disarm them. I have a feeling that the number of lives he has saved through his service work goes well beyond that.

Having Epilepsy is a struggle. Some days it feels too hard for me to even save my own life. I can’t begin to put myself in the shoes of someone like Chris, a real hero who is fighting his Epilepsy battle while helping others fight their demons and saving their lives along the way. I am honored to have heard his story and be able to share it with all of you.

People With Epilepsy Can Be Business Owners

It’s an all too familiar scene for those of us with epilepsy; you begin to feel off, something doesn’t seem quite right, you lose consciousness and before you know it you are coming too with several people around you and a shooting headache with no memory of what just happened.

That is how KK Gardening owner and home-schooling mother of two Kirsty explained the experience of her first seizure to me. Kirsty’s first seizure occurred in 2015. Since then, she began homeschooling her 10 and 8 year old daughters, attended college to become a horticulturist and opened her own gardening business.

Kirsty acknowledges that the road has not been an easy one. Six weeks into her first attempt at college classes she suffered her second seizure and received her formal Epilepsy diagnosis, forcing her to have her license taken away and to put her coursework on hold while she tried out medications that made her feel suicidal, and she grappled with low energy and memory loss. To top it all off, she experienced the loss of her family dog. A veritable “When it rains it pours” type of situation. Many people might throw in the towel in this situation but not Kirsty, she remained positive and moving forward.

“I suffer from quite a few symptoms but have learned to try and keep my chin up even at the most toughest of times.”

 

 

After her second seizure in 2015, Kirsty and Jason, her husband of 12 years made the decision to home educate her daughters. With only one driver’s license between them they were no longer able to provide reliable transportation to and from school and homeschooling was meant to be a temporary solution until the transportation situation was resolved. However, the girls took to homeschooling. Their performance and possibility increased during this trial period. It was then that Kirsty officially became a home-school mom.

Kirsty dedicated 2016 to her children, to building back her self-esteem and to adjusting her life to work with the reduced energy levels and memory problems epilepsy caused her. Near the end of the year, with renewed self-esteem and encouragement from her family Kirsty returned to college part time. She took things slowly, acknowledging her body and mind’s needs, and passed her courses with flying colors.

Today, in addition to educating her daughters, Kirsty owns and operates KK Gardening. When she is not homeschooling, she is outside helping people beautify their homes and gardens. She still struggles with short term memory loss, low energy levels, and self-esteem issues as so many of us do but she has learned to work with it all and is happy. She pushes herself each day to maintain a rich, fulfilling life and is an inspiration to so many others. Kirsty is an example of why we should never give up. As hard as life gets when you battle with Epilepsy, if you set your mind to something, keep your chin up, and make adjustments based on your body and mind’s needs like Kirsty did you too can achieve your dreams.

People With Epilepsy Can Stand Up For Their Rights

If you’re reading this and suffer or have suffered from seizures, or you are the family, friend of caregiver of someone with epilepsy; chances are you know that in late 2017 Jeff Sessions repealed Obama-era sanctions and declared marijuana a schedule one drug, on par with LSD and heroin at the Federal level. You probably also know that 12-year-old Alexis Bortell, who uses cannabis oil to control her seizures, and co-wrote a book about it (thus surpassing this bloggers goals, and making someone who is one third my age my idol) is part of a group that is currently suing Sessions.

What you may not know however, is that due to Sessions actions Alexis, who like so many of us with epilepsy simply wants to live some semblance of a normal life, now cannot visit national parks, fulfill every child’s dream of going to Disney World, or even visit her own grandparents in Texas. The restrictions set in place by Sessions’ move prevent her from visiting Federal property, and put her and her parents both at risk simply by traveling out of state. She is more-or-less confined to Colorado, the state her family moved to about three years ago so she could potentially avoid brain surgery by trying cannabis treatment for her epilepsy.

Alexis in 2014, prior to CBD treatment.      Source: Facebook

As is the case for so many of us with epilepsy (this blogger included), Alexis’s seizures could not be controlled by traditional medicine. The CBD oil, which Alexis takes twice daily, and carries on her in a spray form for use in emergency situations has kept her seizure free for nearly three years.

The treatment works for her, the only trouble is, when traveling across state lines her necessary medication may be viewed as an illegal substance, and her parents could lose custody of her as a result. All she wants is a relatively normal childhood. Battling epilepsy scary enough without fear of losing her parents on top of it.

This is just one of the reasons why Alexis, along with 6-year-old Jagger Cote, former NFL lineman Marvin Washington, and army veteran Jose Bellen filed suit against Sessions in 2017. To the best of my knowledge, results of the suit have yet to be announced. However, on Thursday January 4th, the Department of Justice issued a memo re-enforcing Sessions’ initial decision to criminalize marijuana at the Federal level.

The ending of this story (as it currently exists) may sound a bit dispiriting. That is not what this blog is about though. It is about optimism and action. Right now, we can take action by being like Alexis, and acting as advocates. We can educate ourselves on the medical benefits of cannabis, and share the stories of people like Alexis, and so many others who rely on this natural substance for a varitey of medicinal purposes. If, with research, you find you are not in favor of medical marijuana, be an advocate for epilepsy in general. We need to stand together, educate others, stand up for our rights, and the rights of so many others who fight this epilepsy battle each and every day.

If you want to take immediate action in regards to the Federal stance on medical marijuana, you can contact the Department of Justice. Simply go here, and send a digital form, physical letter, or make a call. The more the department knows about how this bill is affecting the public, the better the chances of them knowing the negative affects it has on the American people.

Stay strong warriors,
The Epileptic Explorer

*Editor’s note: The intention of Epileptic Explorer as a blog was never to become political. As someone with epilepsy uncontrolled by traditional medication, who lives in a place with limited access to medical cannabis, and is facing the surgery decision herself, this issue in particular speaks directly to me. My hope is for people to have access to all of the medical options available to them, so they can make their own, informed decisions on how to best treat their conditions in order to live their best lives.