Please tell me about yourself! You may start wherever you would like. You may include
occupation, fun facts, etc.
I’m 50 years old. I’m a former pediatric nurse, former casino dealer, and I used to own my own
company. I’ve done a whole lot of things. I have enjoyed gaming at casinos for many years. I’m
married and have two kids who are around thirty years old. I love my pets. I have three Yorkies
and a Siberian forest cat. They take a lot of my time, and energy, but they are fun. Something I
really like to do is try to connect with other people who understand cannabis as medicine. I try to
learn as much as I can about the plant, and I also learn about other people’s experiences of cannabis and how they can help me understand how to help out other people.
Please share as much information as you feel comfortable sharing about the nature of your injury
and how it was caused. You may also want to talk about your thoughts regarding this period of
time in your life.
My injury happened when I was working as a nurse. It was caused by a child who didn’t want a
vaccination. I was restraining him from behind. However, he tucked in his chin and headbutted
me in my forehead. I flew into a wall and then back into his head. It was a significant whiplash
injury as well as a frontal lobe and occipital lobe injury.
My life forever changed at that second. Immediately my arm went numb. I had no feeling or
strength in my left arm. I still really don’t. It moves, but it is like I have no ability to do any kind
of fine motor movements or stuff related to that. As a result of the injury, I began to have
headaches. I live with one 24/7 that just pounds at the base of my skull. The other headache is
behind my eyes, and it just never goes away. I use cannabis to relieve that pain, and it allows me
to focus on other things besides just that throb. When I wake up with it in the morning, I tend to
medicate. I eat first and try to start off the day. At night, I sleep. When I began meditating, I used
more cannabis initially so that I could be more productive throughout the day. I keep a steady
level of cannabinoids running through my system.
I have been on over 15 different medications. I have seen over 50 doctors. I have had about 20
different MRIs, as well as neuro-psychological tests. I’ve gone to specialists in three states, and
I’ve gone to Canada to try to find relief. I’ve gone through part of my life savings trying to find
answers because I just have not been comfortable. They say this pain is just from anxiety and
depression. However, I wasn’t an anxious or depressed person prior to my injury.
It was really difficult because some of the medicines that doctors put me on actually had more
disastrous life consequences than the actual symptoms themselves. For instance, I was taking
some Volta. I know many people have had some success with this for depression, but for me, it
was absolutely not a good product. It made me suicidal. Coming off of it was almost worse.
In this kind of situation, you need to understand your own body and become your own advocate.
I can’t say that strongly enough. As a nurse, I was a respected colleague when talking to doctors.
There was never a question of “am I telling the truth” or “is what I’m saying to you real.” Then
all of a sudden, doctors were saying, “Are you really faking this?” Or “This has been hanging on
for six months; this really can’t be.” My injury happened on October 11th, 2016. Here we are in
April 2021. From late 2016 to early 2017, were my worst few months.
In 2017, I found cannabis, and I found hope. However, it is not a cure for all of my health issues.
It sure does help dramatically though.
It took about 18 months before I finally received a firm diagnosis not only of traumatic brain
injury but also instability with two vertebrae in my neck. When I had that whiplash incident,
basically my ligaments became torn and damaged. As a result, the top two bones of my neck
don’t sit properly. It leads to some blood flow and spinal fluid getting to the frontal lobes of my
brain which is why I always have a headache. Once I kind of got that answer, it just validated
that I wasn’t crazy because I really had a mechanical issue. It took so many X-rays, tests, and
different doctors. Finding out the answer doesn’t change the outcome because I still have the
headaches and symptoms. However, it just makes you feel less crazy.
Have there been any obstacles in your life that have made it difficult for you to achieve your
goals? It could be a short-term or long-term problem or obstacle.
I can’t work anymore. Something that is really frustrating is that I can’t be a nurse anymore.
After being a casino dealer, it is a really difficult adjustment not to be able to do complex math
problems. I’m not talking about complicated. I am talking about adding two, double digit
numbers. Like 23 and 17 is a huge thing for me to have to think out. I was a blackjack dealer. I
used to spit out numbers like they were nothing.
Accepting my limitations has been a challenge. I now realize that it is about finding the coping
mechanisms to try and work around those new challenges that I never found myself facing
before. Reading books is very difficult. I used to be a passionate, avid reader. Now, if it doesn’t
have pictures in it, it is like I can’t read it. I’m good at reading short excerpts of things, but as far
as reading a novel and actually being able to remember it, not so much. I’m very much a visual
learner and one that does much better at a hands-on, direct type of communication rather than
trying to learn from a book or trying to follow from a video.
You use your platform to help others in the brain injury community. Are there any stories that
show that you are making an impact in other people’s lives by sharing your story?
I’ve been invited to so many podcasts, and honestly, every day someone reaches out to me and
says, “Wow that really made a difference. Thank you for sharing your story.” Or, “Wow I can
really relate to that.” While doctors are held in extremely high regard, and they are experts, we
all must take our own health into our own hands. That means learning as much as you can about
your condition and seeing if something doesn’t seem right to you.
For me, being a medical professional, I knew something wasn’t right. I really passionately felt
like the doctors were wrong. I didn’t give up. I found someone that would actually listen to me
and look at me as a whole person rather than merely looking at my symptoms. I found many
doctors just wanted to treat the depression, treat the anxiety, treat the headaches. But they did not
want to treat me as a human being. As a result, I think that this injury really taught me
something. I feel like I’m making a bigger impact now with a brain injury than I ever did as a
nurse, dealer, or business owner. I feel like people really want to hear my story and understand it.
My life changed in an instant. I went from somebody who had it all together to all of the sudden,
having crippling anxiety. I can’t leave my house. I can’t get out of bed. However, it was more
than that. It was pain; it was vision issues. I still have a lot of these things. They aren’t magically
gone. It is just a matter of accepting them and getting to know the new you and being okay with
it.
Are there any people for whom you are thankful with respect to your recovery?
I am thankful for many friends and fellow survivors. I’ve had the best support network in the
universe. Life just keeps dropping awesome people down my way. My biggest supporter has
always been my husband. He has had to deal with this new Nikki, just as I have, and it has been a
real challenge for both of us. We’ve been together for 25 years. He knew the old me really well,
and now he knows this new me who is suddenly crying all the time and just so unhappy with
everything. When pain plays a role in your life, everything becomes filled with questions: “How
am I going to cope with this? How am I going to do this?”
Then I had to learn how to really change my whole outlook and realize that if I start going down
the hole of negative thinking, it just takes me to a really dark spot that is difficult to come back
out of. If I start with negative thinking, I try to immediately change that and think of three
positive things that I can look at right now: I’ve got water; I’ve got weed; and I’ve got whatever
there is to be really grateful for. One of the best things that someone once said was, “If you live
in the past, you’re living in depression. If you live in the future, all you are doing is living in
anxiety. But if you live right here, right now, and concentrate on the present, that is what you
need to focus on because that is what is here right now. The only thing you can’t get back is
time. If we focus on this minute right here, this is the time to be alive.”
Is there anyone who inspires you?
Amy Zelmer is a fellow TBI advocate who I really respect. She is making awesome
contributions by helping people with brain injuries and creating brain injury awareness, but she
is not involved with cannabis promotion. I really like the PINK Concussions group. They are a
great source of support. Kelsey Cannabis is a great, fellow TBI survivor in Canada who really
promotes awareness of brain injury. The list is pretty impressive. I could give you 50 different
names of people. Mike Robinson is one of the first people that shared my story. Richelle Gordon,
is another person who shared my story early on. Ruth Fisher wrote The Medical Cannabis
Primer which was the first book I was actually able to read with my brain injury because it is
really broken up nicely so that anyone can understand cannabis as medicine. I just had so many
cool friends and so many great people in my life. I wouldn’t even have met them if I hadn’t
gotten a brain injury. I never would’ve met some of these really cool progressive people.
I have learned so much about the war on drugs and how many people have been sent to jail for
just having an ounce of cannabis on their person, especially in the black and brown communities.
It angers me to the core of my soul. I am walking down the street, and a black person is walking
down the street, and we’re both smoking a joint. I should be just as likely to get arrested as they
are. The statistics say that is not the case. Seven out of ten people arrested for possession of
drugs are black and brown people. That is way too high. I am really trying to change that
dialogue as best as I can, even though I’m only one person. I’m trying to bring awareness. I
never knew all of this, even though I live in Buffalo, New York. We’re a melting pot of humans.
It is just not fair. Now that New York has legalized cannabis, I am really counting on something
great to happen. We can have conceptions of the future. We can have knowledge that will make
a difference for people. I want to be able to teach people about the cannabis plant in a way that
they can understand it. It took me two years to even begin to understand cannabis. It is so
overwhelming if you don’t know anything about it.
After the pandemic cools down a bit more, what is the first thing you would like to do?
I would like to go to Canada as soon as possible. I live 15 minutes from the Canadian border so
my medicine, my friends, my entire culture was 15 minutes away from me. Now it is completely
shut down since the pandemic. I haven’t been to Canada in over a year. Before the pandemic I
would go two to three times a week. It is kind of like living in New Jersey, and you go to New
York City. It is just something you do. Yes, it is another state, but it doesn’t feel like another
state. This is another country, but it doesn’t feel like another country. I have missed my Canadian
friends more than you could possibly imagine. They have been my beacon of support. That is where I learned the most about cannabis. That is how I learned about what the smell of cannabis means and how it benefits brain injury, and how it actually benefits Alzheimer’s patients and cancer patients. There are so many amazing things in this plant, and I learned all about it in Canada.
Where do you see yourself in the next year?
I really hope to be known as a brain injury advocate that uses cannabis. I really hope my
following increases. I’ve got a pretty crazy following right now. I have 3,000 people on
LinkedIn. I have a page on Facebook called Nikki and The Plant. There are around 1,000
followers there. I have 3,000 followers on Instagram. These are all-natural followings. I’m really
inexperienced with social media. I just share and people just follow me. As far as hashtags go or
naming people, it is not my strength. Trying to get into it and be better at it is so much work. I
really hope to get better at social media and hopefully have somebody who can help me full time
on it, so that we can increase the awareness out there regarding brain injury and invisible
disability. I want to create awareness for cannabis and how it can maybe make someone’s life
better. At the end of the day, if one person gets hope just because of my story, then I’ve done a
good job.
What advice would you like to give people who are brain injury survivors and are trying to
adjust to their new life?
Don’t give up. Don’t stop seeking answers. Don’t stop seeking other fellow survivors. Facebook,
Instagram, there are lots of resources out there from a survivor’s standpoint. I think that what
helped me the most probably was hearing other survivors’ stories, learning what they went
through, and knowing that I wasn’t alone on this journey. There is the cannabis community out
there, and then there is the medical cannabis community. There is actually a group called The
Cannabis Community. They kind of introduce you to the plant and help people who are newbies
and who are trying to learn about it. I wish that I had known more about cannabis when I first got
hurt, but I didn’t.
https://linktr.ee/Nikkilawley Learn more about Nikki's story through this link that leads to many podcasts.
Interviewed by Brianna Paulino