“Cannabis Saved My Life:” An Interview with Traumatic Brain Injury Survivor, Nikki Lawley, Part I: Journey to Health

Can you tell us a little bit about your background in the medical field? How did you become introduced to cannabis?

Nikki Lawley: I was a licensed practical nurse (LPN) working in a pediatric office, and my life changed literally in a second. I was helping a coworker restrain a child for a vaccine and the child headbutted me and I was thrown into a wall and back into his head. It was a double impact injury. That day was the last day I worked as a pediatric nurse.

I suffered a traumatic brain injury (TBI) and a whiplash injury resulting in cervical instability. I was suffering from a host of symptoms, including balance issues, significant depression, and anxiety. I was in such pain in my head and my neck that it was debilitating. On a scale of 1 to 10, it was roughly a 7 or 8 and it never went away. The day I got hurt, there was that headache that just literally never went away.

Because I was injured at work, it was a New York state worker's compensation case, which is not a patient-friendly system. I went from being a respected healthcare professional working with coworkers in a healthcare setting to becoming the patient. As a patient in the system, I became simply a number, where the system is designed to get the patient out of the system as soon as possible and back to work. I went to different doctors and specialists, had different independent medical exams, and I was getting nowhere. I was becoming more and more hopeless day by day.

The doctors were just giving me new drugs, new prescriptions, new therapies, telling me they couldn’t find anything wrong with me. I was truly treated like a crazy 46-year-old woman who had nothing wrong with her, despite having lost all basic functions of my life. There was just no break from the horrific side effects I was getting from my head injury. I felt like a burden to my entire family. All I did was cry.

So, how did I find cannabis? My husband thought going to Las Vegas would be a good way to cheer me up. Las Vegas had always been my most favorite place in the world, because before being a nurse, I had been a casino blackjack dealer. But at that time in Las Vegas, I was miserable. I had not left the hotel room in three days. All I did was cry in the corner. It was brutal.At one point, as I was looking over the balcony of the hotel we were staying at, I was thinking about throwing myself off the balcony. I was looking over the edge, thinking that I wasn't really high enough to completely kill myself, when a mobile billboard happened to drive by, advertising, “Get your medical marijuana card in Nevada today.” My husband had left the room and when he came back, I said jokingly, “well, we can go fry my brain on drugs.”

I was very skeptical. Sure, I had smoked pot during parties, but I never thought of cannabis as medicine. In fact, as a pediatric nurse, if you had told me your child was using cannabis for seizures or some other health condition, I literally would have been apt to call Child Protective Services (CPS) on you. I surely was never taught about the plant, nor was this the case for any of the medical professionals I saw during this time.

So long story short, my husband says, “Let's go get your weed card, let's go check it out.”

I stood in front of this bud tender sobbing, “I'm so depressed, I'm in so much pain.” He recommended tons of different products for me to try. I took them all and went back to the hotel room. I ate a bunch of gummies; I had a bunch of tincture. I tried everything that was edible, but none of it really had an effect on me. But I think I had taken so much that I went to sleep for a longer period of time. Actually, though, this was a huge benefit, considering that the pain from my brain injury always kept me awake. So, the fact that I had slept for more than an hour-and-a-half to three hours was huge.

The next morning, I hadn't noticed a huge difference, but then my husband said, “Well, why don't you smoke a joint?” I said, “Alright, but I really don't want to smoke, and my head hurts so bad.” I smoked that joint anyway, and soon after, I was actually feeling good enough to leave the hotel room. I actually wanted to go get breakfast. I wanted to eat. I was functioning and I smoked that second joint before we flew home, and only then was I able to tolerate the airport and plane ride home.

My experience with medical cannabis in Vegas was pretty life changing. I came home to New York thinking, “No problem, do the same thing you did in Vegas. Fill out the form. Get the card. You're good to go and you'll be able to go to a dispensary and get medicine.”

And at this point, I didn't understand the difference between medicinal and recreational cannabis and that it's all the same plant. I thought medical cannabis meant something super high tech, super high end, super different than all the rest. So, I thought this potion in Vegas was just magic at this point. But I couldn't bring it home. And then when I came home to New York, I discovered chronic pain was not a qualifying condition for medical cannabis in New York State at the time.

Shortly after, I began to feel hopeless again. I didn't really think about calling ‘Bubba’ down the street, because I thought what I had used in Vegas was magical medical cannabis, not regular cannabis that people were using recreationally. I didn't explore the illicit market at all.

I started to seek care outside of the New York state workers comp system. I literally spent tens of thousands of dollars trying to find answers, because I was not getting any in the system I was in. Furthermore, every single doctor I spoke to about my using cannabis as a relief for my TBI said, “Yeah, no, that's drug seeking behavior. We can't encourage that. That's illegal.”

The healthcare professionals did not understand any of the science behind cannabis, nor did I. I had nowhere to go at this point. Nothing was showing up on MRIs or special imaging, and so I was just feeling like it's got to just be in my head. That’s when I learned about support groups and found other patients suffering like I was from brain injury, and I started to reach out to them. I posted kind of a dark post on Facebook saying, “I'm such a burden and why am I still here? Doctors don't believe me. Maybe there really is nothing wrong with me. Maybe it is all in my head. Maybe I'm just a little too crazy.” I friend in Canada responded to the post, “Hey, why don't you come up here to Canada? We've got medical weed here. I'll get my card and try it and you can see how it works.” Since I live in Buffalo, New York, the Canadian border is literally 15 minutes from my house.

So again, thinking it's this magical medical weed, I go to Canada and about the third visit I started to really function. My quality of life was insanely better and I started to try and understand the products I was using. “Why does ‘Royal Purple Kush,’ make me feel like a zombie and more brain injured? Yet, this ‘Original Cheese’ makes me feel energized. What I say is that it connects my dots. It connects my brain chemistry in a way that no other pill has, that no other treatment had before. And I was like, there's got to be something to this.”

When I was in Canada, I was able to connect with other Canadians that were in the medical cannabis industry. I started going to events, I started meeting scientists, I started meeting people who really understood the plant. I started following all these Canadian cannabis groups because they had so much more knowledge than people in the United States seemed to. I mean, they had real data and had real studies, none of which I had known about when I had been a medical professional. I could only imagine how many other nurses, healthcare professionals, doctors, and so on also had no idea about the science of this plant.

I was just starting to learn about it in 2018, which is when New York State approved medical cannabis for chronic pain. I was able to get my New York State medical card, but I soon discovered that New York State, Nevada, and Canada, were each whole different worlds at that time.

We had no smokable flower in New York at the time. As I said, in Vegas, nothing had really happened when I had used the edibles or other absorption methods. The long and short of it is I learned that because of my various medical issues, I don’t process cannabis very well, and the only way I seem to absorb it is when I smoke flower. Learning this was a whole eye-opening experience because I had been told by doctors that if I smoke cannabis, it's not medicinal. I had been told by doctors that if I am using high tetrahydrocannabinol (THC), it's not medicinal. These are the doctors, the experts in my area of Buffalo, NY.

I would go to Canada, and I would meet these different groups of people who used cannabis as medicine and go to these different conventions, and I would hear stories so similar to mine, just maybe with a different body part or different condition.

I discovered that the Western medical system had failed us. We were never taught about how holistic plant medicine could potentially help us, instead of just having pills and prescriptions thrown at us. I thought, “How about we treat the whole human? How about we learn what the endocannabinoid system is and what real homeostasis is.” For me, I hadn’t understood any of that. Not at all.

Hearing about this and learning about it was so empowering. My journey has taken me from being the nurse to being the patient to now, being the passionate cannabis advocate that I am today.

Did you receive any guidance on how to approach your medical cannabis journey (1)? How challenging was it to experiment with different cannabis strains, terpenes, and so forth before finding what worked best for you?

Lawley: When I was in Canada going every other weekend and staying for longer periods of time, I began to try and really understand what the names meant because they were very strange to me. It didn't feel medical. Some of the strains were not professional names. At 48 or 49 years old, I was not comfortable saying, “hey, can I get some cheetah piss?” I mean, that's just gross. So, I had a real struggle with the name thing.

And even with the licensed producers, although their names weren't as gross, it was still really hard to understand what was working and why. Around this time, probably a year into my journey, say 2019, I discovered a journaling app that helped me understand what products worked and why.

I had no guidance. I just learned by trying different products.

When cannabis went to the recreational side in Canada, it was a real benefit for patients because there were more products entering the market. The thing that wasn't beneficial for patients is the fact that medical use sort of goes away, and that's what's happening here in New York as well.

In Canada, I happened to have been friends with a cannabis researcher who really took me under her wing and taught me a whole lot of things about the plant and why it works. She taught me the system in Canada, the supply chain, how to get to market, and things like that.

It was a real eye-opening experience to understand a system that worked. I mean, it had its flaws, but the Canadian system sure does a whole lot better than the American one. I mean, the difference in states literally is ridiculous. I mean, I feel like each state is a different country.

But when I can drive 15 minutes to a country where it's totally legal, and yet I'll go to jail if I bring it home to my country even though it's legal in New York state, that is a messed-up system. It's my medicine. I have had to experiment with hundreds and hundreds and hundreds of strains and products to find a product that works, and when I find a product that works for me, no matter what state or country I find it in, I want to be able to use it.

When I finally find a product that works, it's life-changing. It's like almost being normal again. It's being able to do a spreadsheet. It's being able to communicate thoughts that make sense instead of being all over the place like I used to be after my injury and before finding cannabis.Cannabis really does connect my dots.

I'm so passionate about cannabis. It's literally changed my life and I truly believe that I was injured back in 2016 to help other people, to make the experience going from a healthcare professional to a patient, to advocacy, a real thing. Because until you've been there, you really don't understand it. Brain injury is invisible. You can't see it. I don't walk around with a big bandage around my head. You don't know what it took me to be able to do this interview. You don't understand how much I struggle to just remember what to say and to stay on task. These are things that cannabis helps me with.

Learning what I was treating with cannabis was the first battle. You can't just say you're treating TBI or brain injury. You must narrow down the symptoms you are trying to improve your life with or the drugs you're trying to get off of that are creating the imbalance in your body in my case.

You have to find what's working and why. Journaling, that experience was super important, but knowing the chemical profile behind strains you’re consuming is even more important. If you don't have access to that certificate of analysis (COA) or that testing report, it's very difficult to understand what works and why or what you might be sensitive to or not. Unfortunately, I don't have access to COAs in New York state. It's ridiculous that that is not mandated on every cannabis product because that's how patients will become educated and learn what works for them.

For me, it's all about the terpenes and the minor cannabinoids and the entire synergistic effect. I don't feel anything with isolates. I don't feel anything with individual compounds. I don't like that I have to inhale whole flower and combust. But that is the only way I find the medicinal value.

And trust me, I have tried them all and it's been a whole thing. Trying to find something that's more discrete, that's easier, that's portable. Even though I’ve had bad experiences with some products, I don’t give up. Finding the right products makes it all worth it. The right products are totally life-changing.

And that's why I encourage people to really experiment. There's no magic recipe, unfortunately, that's going to treat your specific instance. Meaning what works for me may not work for you because I have a different endocannabinoid system than you. That doesn't mean there aren't similarities that you might be able to take from my experience, and maybe a portion of that might work for you. Again, we're all individuals and learning what works for us is key and understanding why.

Are you able to receive those products in your home state of New York?

Lawley: Honestly, I've been traveling a lot to different states and experimenting with different products. I was recently in Boston, Massachusetts, and I was a speaker at the New England Cannabis Convention (NECANN Convention) and I was able to experience so many different products and was able to have a really great experience there because of the adult-use market.

I had one experience in Boston where the bud tender was absolutely 100% clueless on what I was looking for and was of zero help. But then I had the most amazing experience at the second dispensary I went to, and they were so helpful.

It was such a cool thing to be able to talk to someone on this side of the border, meaning the American side, having someone with knowledge of terpenes, and understanding what I'm looking for.

In New York state, our medical program has improved. We now have whole flower, whereas before we only had ground flower, which is a huge step in the right direction. But the only information we can see as patients in our medical dispensaries is the cannabidiol (CBD) and THC percentage. They refuse to release certificates of analysis, terpene profiles, or anything.

The 10 registered organizations in our New York state market basically wrote the legislation years ago for how the medical program was going to go. Now there are more patients, there's more understanding, there's more science. And so, there's a whole other level of knowledge that wasn't there when these laws were enacted.

One of the things, I think, New York state is doing a poor job of is including patients in the legislation, including patients in the places where decisions are being made. Patient advocates that have gone through the medical program and understand its inadequacies due to having experienced programs in other states and in other countries are an invaluable asset. That's who you're doing it for at the end of the day.

How does cannabis help treat traumatic brain injuries (TBI)? Is it becoming a common therapy to recommend compared to opioids and other medications or surgeries?

Lawley: For me using cannabis to treat my TBI, understanding which specific problems I’m using cannabis to treat was a big thing. I treat my cognitive function, my anxiety, depression, my chronic pain in my head, and my neck. Those are the criteria I evaluate the product against. How much did it improve my pain in my head this morning? It might have been a seven when I woke up, but after I inhaled cannabis, this particular strain that I used and the pain was able to be dropped down to three, that's significant. Knowing what's in that product is so important. For traumatic brain injury, cannabis has been proven to reduce inflammation in the brain. It's also been proven to be a neuro protectant.

In Israel, all the medics carry cannabis spray on board their ambulances and in their kits, even in combat. As soon as anyone suffers a blast injury or a traumatic brain injury, they actually have a nasal spray that they administer at the time of the injury. It's been proven to reduce inflammation.

TBI is a big thing for professional sports players. I think of all the National Football League (NFL) players that are suffering from brain injuries, repeated blows to the head, the hockey players, and the other sports players.

Cannabis can replace opioids in many cases, and I just encourage people to really try for that. As far as the research goes, it's definitely up and coming. It's advancing quickly. They're also finding psychedelics being very effective in treating the same things that I've mentioned—the chronic pain, anxiety, depression, and cognitive function.

We need more research, more validation. There's research out there, but we need to make it more readily available for clinicians, for patients, and people to really understand why it's working.

I can tell you cannabis saved my life without hesitation from my traumatic brain injury symptoms. It didn't cure me. It's just allowed me to function and actually live instead of being alive.

For part II of this interview series, please click this link: https://www.cannapatientcare.com/view/-cannabis-saved-my-life-an-interview-with-traumatic-brain-injury-survivor-nikki-lawley-part-ii-crossing-borders-for-cannabis

Reference

1. https://www.nikkiandtheplant.org/about-nikki-and-the-plant.html