Editor’s note: The following is a lightly edited interview with Enedina Stanger, a Utah mother who suffers from a rare genetic disease called Ehlers-Danlos syndrome. She recently began using cannabis, which helps, but was charged with a felony. She has blogged about her story here.
Not content to stay in the shadows, she has told her story in detail to Libertas Institute out of a desire to speak up and help change the law she violates out of medical necessity. The comments in this interview do not necessarily reflect the views of Libertas Institute.
Libertas Institute: Tell our readers about Ehlers-Danlos syndrome (EDS)
Enedina Stanger: It’s a group of really crazy, inherited genetic conditions that are affected by the mutations in collagen. It’s very rarely diagnosed because it’s a systemic thing that doctors are just now learning more about.
My symptoms began neurologically—I started passing out and having dizzy spells. Half of my face was sagging. Doctors thought maybe it was MS or Parkinson’s at first. Most EDS cases affect the joints primarily, and outward symptoms like flexibility and such. With me, it’s a crazy freak form of EDS that attacks the collagen in my internal organs as well.
LI: Is there a cure? Are there any surgeries or medicines you can take?
ES: It’s incurable. My case is uncategorized, whereas other types of EDS have been categorized. There just hasn’t been much research; there’s no money for it. And you can’t change your DNA that produces the collagen, so…
The onset of my symptoms was so fast, in the soft tissue, that there was nothing to repair anymore. All of my bones went out of their joints at such a rapid progression that the tissue was really damaged. I don’t even have hip capsules—they’re just shredded.
LI: Is all of this painful? How do you feel as a result of EDS?
ES: It’s excruciating! I hurt all of the time. I have to try and smile, otherwise I’d be crying all of the time.
I call this my “concentration camp.” I realize that sounds drastic, but I’ve studied history and identify with Man’s Search for Meaning and other people who have experienced horrible things. My body is my concentration camp. My joints are the SS guards. At any second, they’re going to turn on me, and I have to be able to brutally take it, pop them back in, and keep on going.
LI: Presumably you’ve been prescribed opiate-based medication to manage your pain. What has been your experience with that?
ES: Because of the damage that had happened already to my system, my stomach and bowels don’t work. But the doctors put me on opiates, and my stomach just stopped working. I was rushed to the ER because they thought my intestines were going to rupture.
Opiates cause constipation and they stopped my system—it could have ruptured my internal organs. So the doctors tried to put me on long-acting types that are supposedly better. They put me on Tramadol claiming it would be better. It was much worse.
I was bed-ridden for nearly a year on opiates.
I was bed-ridden for nearly a year on opiates. As a last resort, with the Tramadol, I was knocked out completely. I don’t even remember what happened… when I woke up after taking my first dose, I had fallen onto my daughter’s lap and I apparently had vomited. So I was rushed back to the ER and later found out that because of my weakened nervous system, the “time release” aspect to these medicines doesn’t work—for me, all of the medicine hit at the same time, and caused me to have a massive attack.
LI: Have you ever come near death?
ES: Yes. It was crazy—doctors had me on all sorts of lorazepam, loratab, percocet, etc. trying to find the right one. I got so sick so many times, and my body would shut down. With Tramadol, my breathing shut down. Doctors would have to revive me because of the pain medicines.
But there’s also the effect that it had on my life; it sent me into a tailspin.
But there’s also the effect that it had on my life; it sent me into a tailspin. I got so depressed that I was on the point of committing suicide. My husband didn’t know what to do, and nothing was helping—at all.
LI: When did you first decide to start using cannabis?
ES: My husband Michael kept researching it and learning that EDS patients around the country were being helped because of cannabis. I have an open mind to natural medicines.
It’s now been around a year and a half. Anybody that’s met me since that time has known a person that uses cannabis for pain—and that I’m a normal, functioning person.
LI: What is an average day like for you without cannabis, versus using it?
My life without cannabis is a horrible, black place. Every minute of every day, I have to consciously not think about my pain.
ES: The police recently confiscated my supply of medicine, so for a while I didn’t have any. I didn’t realize how sick I was until I no longer had the cannabis. I was vomiting violently every morning; I couldn’t keep any food down. I was shaking with muscle spams and trembling because of the pain. I’d have to relocate my joints—excruciating, blinding pain. I can’t even explain.
My life without cannabis is a horrible, black place. Every minute of every day, I have to consciously not think about my pain. And if I don’t have the relief from cannabis—dealing with my nausea, muscle spasms, and everything else—I am a vegetable. I’m just a blob. I lay there in pain, all the time.
LI: Some might argue that using cannabis around children is irresponsible. What type of mother are you when using cannabis versus not?
ES: My children are the reasons I decided to give cannabis a shot. I started getting sick when my youngest was just a few months old. I missed the first year of her life because I was bed-ridden, on a bunch of crazy pills. I had all these new symptoms I had to figure out how to manage, while also dealing with all the side effects from the opiates.
As soon as I used cannabis the first time, I was able to play with my kids.
It is amazing. Since then, it doesn’t matter the pain I’m in… I can use the medicine in the morning and play with my daughters. I don’t use a wheelchair in our home—I crawl around on the floor, moving around as much as I can so my daughters know something regular. I can do that because I have cannabis.
Cannabis gives my body the ability to function. As soon as I start cramping, I’ll go to another room, use the cannabis, pop in whatever joints are out of place, and then I can keep going.
Everybody’s so worried, thinking that THC is this demon thing, but I don’t get “high.” And THC is what I need, together with CBD.
LI: Senator Madsen’s proposed legislation would legalize the type of cannabis you need, and allow it for chronic pain—so you’d be covered. But another bill by Representative Daw would allow only CBD, and prohibit any form of cannabis for chronic pain. What are your thoughts on that?
ES: Rep. Daw’s bill will not help the thousands of parents and patients and children here in Utah who need access to THC. For somebody like me, CBD will do absolutely nothing. I could drink a bottle of CBD oil all day, and I still won’t be the mom I need to be. I need the whole plant to be able to help me do what I need to do.
Whole plant cannabis brings me back so that I’m not stuck in my pain prison. It brings me back to my children. It doesn’t take me away from them, and it doesn’t hurt them.
For somebody like me, CBD will do absolutely nothing. I could drink a bottle of CBD oil all day, and I still won’t be the mom I need to be.
My daughters have now been diagnosed with EDS as well. I’m fighting for myself, but also because I know that they are going to need access to THC and CBD. A cannabis cream could help my daughter when her ankle dislocates and she’s in torturous pain, and I can’t give her narcotics.
LI: You recently had an altercation with law enforcement. Can you share what happened?
ES: We’ve been trying to sell our house because of all the medical debt. We had a last minute showing on October 1, and that entire week I had been having a lot of neck pain, and my vertebrae started shifting. Our real estate agent called and said we needed to leave the home for an hour to do a showing. We were desperate to sell the home, so we quickly drove across the street to the Walmart parking lot.
I took all the cannabis and supplies with me, since I didn’t want somebody finding it in the home. While waiting in the car, there was an emergency; my collar bone started shifting and I had some muscle spasms, so I had my husband take our daughters into a nearby store while I used the medicine and relocated my joints in the car.
The windows were rolled down so while there was no smoke or anything, you could smell it because it was potent; I have to use a high potency strain for it to work. A guy who parked near us apparently smelled it and called the police. Officers from South Ogden blocked our car in and the officers came and shined their lights on me.
The officer claimed that he had multiple witnesses saying that my husband and I were smoking and “hotboxing” in the vehicle. Obviously, I was taken aback—it wasn’t true. I told him right away that it was my cannabis, how I had used it, what my medical condition was, etc. He claimed I was like a “meth mom” or the same as using crack in front of my daughter.
I asked the police officer what I was supposed to do, and he said “Well, you should be in Colorado.”
I gave him all of my marijuana supplies after he threatened to take my children. I was always honest, and explained why I used it. My husband returned and was questioned separately, and the police told him that they were going to charge me with felony child endangerment and marijuana possession.
The officer came and told me that the only reason he wasn’t going to book me is because I was in a wheelchair. I asked the police officer what I was supposed to do, and he said “Well, you should be in Colorado.” Look, I’m not a fan of the smell either, but I didn’t use it around my daughter, and if a smell is going to save my life, then that’s what matters.
LI: So were you given a citation, since you weren’t arrested?
ES: The officer didn’t tell or give me anything, and just took all my stuff. He did say that the Division of Child and Family Services (DCFS) would begin investigating me, and that I should leave to Colorado if I did need it for my health.
The officers waited until my parents came to drive us all home, because the officers didn’t trust my husband who said he wasn’t using marijuana. Three days later, we had fled to Colorado when a DCFS agent called me and said she was at our doorstep, and she wanted to know why there was a lockbox on the door and a “For Sale” sign. I explained we had already left, and that’s when she told me that charges had been filed for felony child endangerment and that she was investigating it.
LI: Do you think it’s odd that you would be charged with that, when adults can drink alcohol and smoke cigarettes near their children without facing the same consequence?
ES: Yeah! How many parents are using pain pills—drugs that actually change people’s behavior and state of mind. Parents are allowed to be with their kids while using pharmaceuticals, and here I am using something natural that doesn’t negatively affect my kids.
In my plea deal, I had to plead that I was using marijuana in a “safety zone” because my daughter was around. They wouldn’t let me plead to a regular misdemeanor. But you can have alcohol or prescription painkillers in a “safety zone”?
LI: What punishment do you face?
After I was charged, the judge told me, “This is ridiculous. I hope you can get the law changed and that you can come back home.”
ES: When the prosecutor and judge saw me in my wheelchair at trial, they dropped the fines and the community service. After I was charged, the judge told me, “This is ridiculous. I hope you can get the law changed and that you can come back home.” He wasn’t a very nice judge at first—I was so scared! But I explained that this is my medicine and that it doesn’t make me high. He was really nice in the end.
LI: Under the status quo, or even if Rep. Daw’s CBD-only bill passes, you would continue to face criminal charges in Utah. Do you belong in jail?
ES: No! Any legislator who supports Rep. Daw’s bill over Sen. Madsen’s is basically saying that I deserve to be in jail—that people who need alternative forms of medicine deserve to be punished. That is not okay! The only bill that’s going to protect me, and the reason I’m speaking out now, is Sen. Madsen’s bill. Among other things, it prohibits DCFS from going after parents who are using cannabis as a medicine. Other states don’t have that protection, so even if the state has legalized it, they can still try to take your kids away because of the federal law.
I shouldn’t be chased down like a criminal simply because I’m a mom who chooses to use this medicine.
LI: If you could speak to the entire Utah legislature for two minutes, what message would you deliver?
I shouldn’t be chased down like a criminal simply because I’m a mom who chooses to use this medicine.
ES: I’m an anomaly. I’m a medical freak. I have no idea why I’m alive. I have endured more pain than I thought was humanly possible. Doctors have examined me and have the same wonder—why is my body still working?
The reason I’m here is because I have a purpose on this earth. I have to look at the blessings and the miracles I’ve received. Being someone of faith, and realizing that cannabis is a natural gift of God.
This isn’t a political thing. It isn’t a religious thing. It’s not a moral question. The only point, really, is: should it be legal or not? Should suffering people like me be punished?
To stop patients—people that are so desperate for help—because of personal biases, preference towards pharmaceuticals, politicians, or misconceptions of what this medicine does—is awful. I feel like my life has been preserved to help inform people about this plant.
Every single day I’m here is a miracle, and every single day I’m here, cannabis helps me stay one more day for my children.