Ellen Lenox Smith, Rhode Island

Ellen Lenox Smith was a competitive swimmer and dedicated teacher and coach when, at age 42, it became clear something was wrong. She had pain that could not be identified or treated but worsened over the next dozen years.

She was finally diagnosed with Ehlers-Danlo Syndrome, a rare genetic disorder that attacks the body’s connective tissue. In the 25 years since her medical journey with this condition began, surgery after surgery has been required to deal with its effects, now totaling 24. 

It was 2007 when Ellen decided she couldn’t take the pain anymore. She was preparing to leave for another surgery with a specialist in Wisconsin when she asked her primary care physician for a referral to pain clinic. At the clinic, first the nurse and then the doctor asked her if she had children at home – her four were already adults by then – before the doctor confided that cannabis might help.

Ellen was shocked. She had never considered cannabis as an option for pain, and her minimal experience with it in college suggested the effects would be unpleasant. As someone who prizes being in control, she had hated it. But that was then, and now she was desperate.  

Rhode Island had just enacted a medical cannabis law the year before, but it did not then allow for anything other than home cultivation, so Ellen’s doctor suggested she find some cannabis on the illicit market and try it. If it worked, he’d sign her up for the state program. Because she had also developed sarcoidosis in her lungs, smoking anything was out of the question, so she had to go with an oral cannabis extract. A friend of her son helped her obtain some plant material and convert it to an oil. After warning her husband that she was likely to turn into some sort of lunatic, she took some and went to bed. 

Next thing she knew, it was morning. For the first time in years, she’d slept through the night.  

“After that, there was no way I was going to keep my mouth shut,” Ellen says. With the help of her pain specialist, she enrolled in the Rhode Island medical cannabis program. 2007 was also the year when her worsening condition meant she had to leave the career she’d loved behind, a heartbreaking decision, but it was the start of a different life. 

“Cannabis gave me some dignity back,” says Ellen, who is now 67. “It activated my life again. You wouldn’t want to be in my body, but I was able to do things and smile again. People can take the smile and assume I’m okay. I’m not, but it’s great to be able to be positive.”

Together with her husband, Ellen has become a compelling voice for pain patients and medical cannabis access, serving on the board of the U.S. Pain Foundation and as co-director of the foundation’s cannabis advocacy, as well as working with the Rhode Island Patient Advocacy Coalition (RIPAC). The Smiths’ efforts to raise awareness include everything from testifying at hearings and holding in-service events for doctors and nurses at area hospitals to convincing their town council to allow them to put up blue-and-white ribbons throughout town as part of the foundation’s national campaign on chronic pain. Ellen has appeared twice before the Food and Drug Administration (FDA) on behalf of the Pain Foundation, speaks yearly to new medical students at Brown University medical school, and presents regularly at conferences, including ASA’s National Unity Conference, where she is slated to appear again in 2018.

Recently, Ellen did genetic testing that revealed treating the pain for her condition has two options: ketamine, an anesthetic for which new applications are being explored, and cannabis, confirming what she had discovered 13 years ago. That testing has given her new certainty. 

“We need national access to medical cannabis,” Ellen says. “You shouldn’t be denied relief just because you live in the wrong state.”

Ellen tracks cannabis legislation in Congress and in states across the nation, and writes for the National Pain Report and other publications, including newspaper opinion pieces on how cannabis has transformed her life.

“We’re going in the right direction,” she says. “I’m hoping to see national change soon.

This profile was originally published in the March 2018 ASA Activist Newsletter