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Patient Ellen Lennox Smith shares her chronic pain story and how cannabis allowed her to live her life again.
“People who live with pain all of the time, day in and day out, can find help and support.” That is the message that Ellen Lenox Smith hopes to spread through her activism. Her goal is to help spread awareness so that people in pain can possibly get back some improvement on their quality of life. “People in constant pain often are reluctant to talk about it and to seek help for fear they will be perceived as weak by others,” said Lenox Smith.
But no one knows better than Lenox Smith, that there can be relief.
At 42 years old, Lenox Smith began to feel that something was wrong. Still teaching at the time, she could barely remember the names of her students—many of whom she had known for years—because she was so distracted by pain.
Lenox Smith suffers from two rare, incurable conditions, Ehlers-Danlos Syndrome and sarcoidosis. Ehlers-Danlos Syndrome is a degenerative collagen disorder and is a crippling disease that allows her joints to become easily subluxed or even dislocated. This condition has confined her to a wheelchair for four years of her life in the past and is the cause for 26 surgeries. Sarcoidosis has caused enlarged lymph nodes and granulomas in her lungs.
In 2007, Lenox Smith decided she couldn’t take the pain anymore. While preparing to leave for yet another surgery with a specialist, she asked her primary care physician for a referral to a pain clinic. It was at this pain clinic that she first learned about the possibility that cannabis could help.
Lenox Smith was a resident of Rhode Island, and the state had just enacted a medical cannabis law the year before. However, the very-limited law did not then allow for any method of production or retail of medical cannabis, other than home cultivation. Although illegal, Lenox Smith’s doctor suggested she find some cannabis on the illicit market and try it to see if it helped and if it did, he would sign her up for the state program. Because she had 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. The first night she took some oil she was deeply afraid of how she would react or feel. But she was more than surprised when she woke up the next morning having slept through the entire night for the first time in as long as she could remember. This was something previously unheard of with the level of pain she was having. Since then, she has been taking medicine at night to help her sleep. Which in turn, helps her have a peaceful day.
“It’s unbelievable what sleep does for anybody. It just begins to help turn your life around. No matter what chronic problem I have, I am dealing with it with dignity because I am getting restful sleep and it’s pretty magical,” she said.
From that moment on, she knew she needed to share this information with others and help people walk through the same fears she experienced in the hopes it would provide them with relief as well. With the help of her pain specialist, she enrolled in the Rhode Island medical cannabis program. Since then, Lenox Smith, together with her husband of over 48 years, Stu, has become a leading voice for patients living with pain. Experiencing what a change cannabis has made in her life, Lenox Smith became committed to advocating for it, not just in her home state of Rhode Island, but across the country. Her efforts to raise awareness have included everything from testifying at hearings to holding in-service events for doctors and nurses at area hospitals. Lenox Smith has appeared before the Food and Drug Administration (FDA), spoken to new medical students, and presented at conferences, including Americans for Safe Access (ASA)’s National Unity Conference. She is committed to doing anything and everything to help spread awareness so that others can find relief.
“We want to help spread awareness because you, too, could get back your quality of life,” she said.
Lenox Smith is very limited to what she can put into her body. Due to Ehlers-Danlos, she has a lot of food and medication sensitivities. While in the hospital for surgery, she had a deoxyribonucleic acid (DNA) drug sensitivity testing, which showed her body does not properly metabolize medications such as aspirin, Tylenol, Benadryl, or any opioids. So, for her, cannabis is the only medicine she can use for pain relief.
Since Lenox Smith is incredibly reactive to certain foods and medications, and labeling issues still do not include everything that she may need to know, it is extremely important for her to grow her own cannabis so that she can create an oil that works best for her. She can 100% guarantee her own cannabis is safe for her to consume.
While she is now a legal patient in the state of Rhode Island, her biggest struggle to this day is that although she cannot take other medications, she is also not legally allowed to take cannabis in a hospital or across state lines. “We need national access to medical cannabis,” said Lenox Smith. “You shouldn’t be denied relief just because you live in the wrong state or because the government still has it listed as Schedule I.”
“Cannabis gave me some dignity back,” said Lenox Smith, who is now 72. “It activated my life again… I was able to do things and smile again. People see the smile and assume I’m okay. I’m not, but cannabis helps me to be able to be positive.”
Ellen is a proud member of Americans for Safe Access, a Rhode Island ambassador for the US Pain Foundation as both a board member and co-director for Cannabis Advocacy, was on the board of the Rhode Island Patient Advocacy Coalition (RIPAC) as secretary before it closed down, appointed by the governor to both the ATEL Program, (Adaptive Telephone Equipment Loan Program) and the Compassion Center Oversight Committee, helps run the RI EDS Support group finding speakers to educate and empower others, is a former staff writer for Pain News Network and was a staff writer for both National Pain Report and 1000 WATTS Magazine until the shut down for good during the pandemic. She speaks and presents webinars about Cannabis, Ehlers-Danlos advantages of service dogs, and living with chronic pain.
A proud mother of four adult children, three grandsons, and two granddaughters, Ellen is also an organic gardener, and prior to her disability was a master swimmer and high school swim coach.
Debbie Churgai is the Executive Director of Americans for Safe Access (ASA), a medical cannabis patient advocacy non-profit whose mission is to ensure safe and legal access to cannabis (marijuana) for therapeutic use and research. Debbie oversees all organizational and program operations in regards to education, training, policy, research, product safety and business compliance. Current projects include national campaigns such as ASA’s End Pain, Not Lives campaign and No Patient Left Behind campaign and programs such as ASA’s Patient Focused Certification (PFC) program and the Cannabis Care Certification (CCC) program. She serves as a writer and final editor on ASA publications including the State of the States Report, the Patients Guide to CBD, and the Medical Cannabis Access for Pain Treatment report.